Influence of institutional culture and policies on do-not-resuscitate decision making at the end of life.

PubMed

Dzeng, Elizabeth; Colaianni, Alessandra; Roland, Martin; Chander, Geetanjali; Smith, Thomas J; Kelly, Michael P; Barclay, Stephen; Levine, David

2015-05-01

Controversy exists regarding whether the decision to pursue a do-not-resuscitate (DNR) order should be grounded in an ethic of patient autonomy or in the obligation to act in the patient's best interest (beneficence). To explore how physicians' approaches to DNR decision making at the end of life are shaped by institutional cultures and policies surrounding patient autonomy. We performed semistructured in-depth qualitative interviews of 58 internal medicine physicians from 4 academic medical centers (3 in the United States and 1 in the United Kingdom) by years of experience and medical subspecialty from March 7, 2013, through January 8, 2014. Hospitals were selected based on expected differences in hospital culture and variations in hospital policies regarding prioritization of autonomy vs best interest. This study identified the key influences of institutional culture and policies on physicians' attitudes toward patient autonomy in DNR decision making at the end of life. A hospital's prioritization of autonomy vs best interest as reflected in institutional culture and policy appeared to influence the way that physician trainees conceptualized patient autonomy. This finding may have influenced the degree of choice and recommendations physician trainees were willing to offer regarding DNR decision making. Trainees at hospitals where policies and culture prioritized autonomy-focused approaches appeared to have an unreflective deference to autonomy and felt compelled to offer the choice of resuscitation neutrally in all situations regardless of whether they believed resuscitation to be clinically appropriate. In contrast, trainees at hospitals where policies and culture prioritized best-interest-focused approaches appeared to be more comfortable recommending against resuscitation in situations where survival was unlikely. Experienced physicians at all sites similarly did not exclusively allow their actions to be defined by policies and institutional culture and were willing to make recommendations against resuscitation if they believed it would be futile. Institutional cultures and policies might influence how physician trainees develop their professional attitudes toward autonomy and their willingness to make recommendations regarding the decision to implement a DNR order. A singular focus on autonomy might inadvertently undermine patient care by depriving patients and surrogates of the professional guidance needed to make critical end of life decisions.

How can we best respect patient autonomy in breast cancer treatment decisions?

PubMed Central

Martinez, Kathryn A; Kurian, Allison W

2015-01-01

SUMMARY Helping patients to maximize their autonomy in breast cancer decision-making is an important aspect of patient-centered care. Shared decision-making is a strategy that aims to maximize patient autonomy by integrating the values and preferences of the patient with the biomedical expertise of the physician. Application of this approach in breast cancer decision-making has not been uniform across cancer-specific interventions (e.g., surgery, chemotherapy), and in some circumstances may present challenges to evidence-based care delivery. Increasingly precise estimates of individual patients’ risk of recurrence and commensurate predicted benefit from certain therapies hold significant promise in helping patients exercise autonomous decision-making for their breast cancer care, yet will also likely complicate decision-making for certain subgroups of patients. PMID:25733982

Women's autonomy in decision making for health care in South Asia.

PubMed

Senarath, Upul; Gunawardena, Nalika Sepali

2009-04-01

This article aims to discuss women's autonomy in decision making on health care, and its determinants in 3 South Asian countries, using nationally representative surveys. Women's participation either alone or jointly in household decisions on their own health care was considered as an indicator of women's autonomy in decision making. The results revealed that decisions of women's health care were made without their participation in the majority of Nepal (72.7%) and approximately half of Bangladesh (54.3%) and Indian (48.5%) households. In Sri Lanka, decision making for contraceptive use was a collective responsibility in the majority (79.7%). Women's participation in decision making significantly increased with age, education, and number of children. Women who were employed and earned cash had a stronger say in household decision making than women who did not work or worked not for cash. Rural and poor women were less likely to be involved in decision making than urban or rich women.

Feminism and Psychological Autonomy: A Study in Decision-Making.

ERIC Educational Resources Information Center

Sacks, Susan R.; Eisenstein, Hester

Women seeking to realize the feminist goal of autonomy, defined as self-interested decision-making, encounter conflict and anxiety. This study reports a group experience, using life-space drawings and force-field analyses to reduce anxiety and foster autonomous decision-making. Of the 15 women participants in the year-long study, 100% reported at…

Efficiency of Fiscal Allocations in Site-Based Empowered Schools

ERIC Educational Resources Information Center

Meyer, Jerome Jay

2011-01-01

This study implemented a two phase concurrent mixed-methods design to generate a greater understanding of how elementary schools with increased autonomy in fiscal decision making allocated their money, how their site-based decisions affected allocative efficiency, and how increased autonomy affected site-based decision making when compared with a…

Patient autonomy in multiple sclerosis--possible goals and assessment strategies.

PubMed

Heesen, C; Köpke, S; Solari, A; Geiger, F; Kasper, J

2013-08-15

Patient autonomy has been increasingly acknowledged as prerequisite for successful medical decision making in Western countries. In medical decisions with a need to involve a health professional, patient autonomy becomes apparent in the extent of patients' participation in the communication as described in the concept of shared decision making. Patient autonomy can be derived from different perspectives or goals and the focus of evaluation approaches may vary accordingly. Multiple sclerosis (MS) is a paradigmatic disease to study patient autonomy mainly because MS patients are highly disease competent and due to ambiguous evidence on many aspects of disease-related medical decision making. This review gives an overview on measurement issues in studying decision making in MS, categorized according to prerequisites, process measures and outcomes of patient autonomy. As relevant prerequisites role preferences, risk attribution, risk tolerance, and risk knowledge are discussed. Regarding processes, we distinguish intra-psychic and interpersonal aspects. Intra-psychic processes are elucidated using the theory of planned behavior, which guided development of a 30-item scale to capture decisions about immunotherapy. Moreover, a theory of uncertainty management has been created resulting in the development of a corresponding measurement concept. Interpersonal processes evolving between physician and patient can be thoroughly analyzed from different perspectives by use of the newly developed comprehensive MAPPIN'SDM inventory. Concerning outcomes, besides health related outcomes, we discuss match of preferred roles during the decision encounters (preference match), decisional conflict as well as an application of the multidimensional measure of informed choice to decisions of MS patients. These approaches provide an overview on patient-inherent and interpersonal factors and processes modulating medical decision making and health behavior in MS and beyond. Copyright © 2013. Published by Elsevier B.V.

Negotiated autonomy in diabetes self-management: the experiences of adults with intellectual disability and their support workers.

PubMed

Whitehead, L C; Trip, H T; Hale, L A; Conder, J

2016-02-02

The basic human right of autonomy is underpinned by the ability to practice decision-making. The rights of people with disabilities to engage in autonomous decision-making are promoted as best practice and includes decisions around health and self-care. Little is known about autonomy in the field of long-term condition management. This paper explores how people with intellectual disabilities (ID) and their support workers experience and practice autonomy in relation to the management of diabetes. Semi-structured interviews were completed in residential and independent living settings with people living with an ID and type 1 (N = 8) or type 2 (N = 6) diabetes and their support workers (N = 17). The participant with ID's support worker was present as requested; however, the interviews were run separately with each participant rather than jointly. Thematic analysis was undertaken, and a constructivist lens informed both data collection and analysis. The analysis revealed a strong process of negotiated autonomy between people with ID and their support workers in relation to the daily management of diabetes. During times of transition, roles in relation to diabetes management were renegotiated, and the promotion of autonomy was prefaced within the context of risk and client safety. Goals to increase independence were drivers for negotiating greater autonomy. The successful negotiation of autonomy in relation to diabetes illustrates the potential for people with ID to play a key role in the management of long-term health conditions. The study highlights the primacy of developing decision-making skills among people with ID. Promoting opportunities for decision-making and an ethos of supported decision-making through person-centred planning are all vital in working towards enhancing autonomy. © 2016 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd.

Adolescent and parental perceptions of medical decision-making in Hong Kong.

PubMed

Hui, Edwin

2011-11-01

To investigate whether Chinese adolescents in Hong Kong share similar perceptions with their Western counterparts regarding their capacity for autonomous decision-making, and secondarily whether Chinese parents underestimate their adolescent children's desire and capacity for autonomous decision-making. 'Healthy Adolescents' and their parents were recruited from four local secondary schools, and 'Sick Adolescents' and their parents from the pediatric wards and outpatient clinics. Their perceptions of adolescents' understanding of illnesses and treatments, maturity in judgment, risk-taking, openness to divergent opinions, pressure from parents and doctors, submission to parental authority and preference for autonomy in medical decision-making are surveyed by a 50-item questionnaire on a five-point Likert scale. Findings indicate that Chinese adolescents aged 14-16 perceive themselves to possess the necessary cognitive abilities and maturity in judgment to be autonomous decision-makers like their Western counterparts. Paradoxically, although they hesitate to assert their autonomy, they are also unwilling to surrender that autonomy to their parents even under coercion or intimidation. Parents tend to underestimate their adolescents' preferences for making autonomous decisions and overestimate the importance of parental authority in decision-making. '14-and-above' Chinese adolescents in Hong Kong perceive themselves as capable of autonomous decision-making in medically-related matters, but hesitate to assert their autonomy, probably because of the Confucian values of parental authority and filial piety that are deeply embedded in the local culture. © 2010 Blackwell Publishing Ltd.

The More, the Better? Curvilinear Effects of Job Autonomy on Well-Being From Vitamin Model and PE-Fit Theory Perspectives.

PubMed

Stiglbauer, Barbara; Kovacs, Carrie

2017-12-28

In organizational psychology research, autonomy is generally seen as a job resource with a monotone positive relationship with desired occupational outcomes such as well-being. However, both Warr's vitamin model and person-environment (PE) fit theory suggest that negative outcomes may result from excesses of some job resources, including autonomy. Thus, the current studies used survey methodology to explore cross-sectional relationships between environmental autonomy, person-environment autonomy (mis)fit, and well-being. We found that autonomy and autonomy (mis)fit explained between 6% and 22% of variance in well-being, depending on type of autonomy (scheduling, method, or decision-making) and type of (mis)fit operationalization (atomistic operationalization through the separate assessment of actual and ideal autonomy levels vs. molecular operationalization through the direct assessment of perceived autonomy (mis)fit). Autonomy (mis)fit (PE-fit perspective) explained more unique variance in well-being than environmental autonomy itself (vitamin model perspective). Detrimental effects of autonomy excess on well-being were most evident for method autonomy and least consistent for decision-making autonomy. We argue that too-much-of-a-good-thing effects of job autonomy on well-being exist, but suggest that these may be dependent upon sample characteristics (range of autonomy levels), type of operationalization (molecular vs. atomistic fit), autonomy facet (method, scheduling, or decision-making), as well as individual and organizational moderators. (PsycINFO Database Record (c) 2017 APA, all rights reserved).

Impact of Maternal Household Decision-Making Autonomy on Child Nutritional Status in Bangladesh.

PubMed

Rahman, Md Mosfequr; Saima, Umme; Goni, Md Abdul

2015-07-01

This study examines the relationship between maternal household decision-making autonomy and children's nutritional status using data from 2011 Bangladesh Demographic and Health Survey. The analyses are restricted to 2056 currently married, nonpregnant women aged 15 to 49 years who had at least 1 birth 5 years preceding the survey. Theoretically relevant predictors of children's nutritional status including maternal autonomy are analyzed to identify factors significantly associated with children's nutritional status using stepwise logistic regression. Results indicate that 34.8% children are stunted, 16.1% are wasted, and 45.9% children are underweight. Children whose mothers participated in making all household decisions are 15%, 16%, and 32% significantly less likely to be stunted (odds ratio = 0.85; 95% CI = 0.67-0.98), underweight (odds ratio = 0.84; 95% CI = 0.70-0.98), and wasted (odds ratio = 0.68; 95% CI = 0.52-0.90), respectively, than mothers who did not participate in making any decision. Increasing maternal decision-making autonomy may reduce the prevalence of malnourished children as well as contribute to have a healthier future generation. © 2015 APJPH.

Feminist ethics and menopause: autonomy and decision-making in primary medical care.

PubMed

Murtagh, Madeleine J; Hepworth, Julie

2003-04-01

The construction of menopause as a long-term risk to health and the adoption of discourses of prevention has made necessary a decision by women about medical treatment; specifically regarding the use of hormone replacement therapy. In a study of general practitioners' accounts of menopause and treatment in Australia, women's 'choice', 'informed decision-making' and 'empowerment' were key themes through which primary medical care for women at menopause was presented. These accounts create a position for women defined by the concept of individual choice and an ethic of autonomy. These data are a basis for theorising more generally in this paper. We critically examine the construct of 'informed decision-making' in relation to several approaches to ethics including bioethics and a range of feminist ethics. We identify the intensification of power relations produced by an ethic of autonomy and discuss the ways these considerations inform a feminist ethics of decision-making by women. We argue that an 'ethic of autonomy' and an 'offer of choice' in relation to health care for women at menopause, far from being emancipatory, serves to intensify power relations. The dichotomy of choice, to take or not to take hormone replacement therapy, is required to be a choice and is embedded in relations of power and bioethical discourse that construct meanings about what constitutes decision-making at menopause. The deployment of the principle of autonomy in medical practice limits decision-making by women precisely because it is detached from the construction of meaning and the self and makes invisible the relations of power of which it is a part.

Women's Autonomy and Attitudes toward Condom Use: A Multicountry Analysis.

PubMed

Sharma, Bonita B; Small, Eusebius; Mengo, Cecilia; Ude, Paula

2017-01-01

Autonomy gives women the ability to negotiate safe sex and make decisions on their health. This study explores the gender stratification framework to understand the intertwined nature of HIV and women's autonomy using the nationally representative Demographic Health Survey. It examines women's autonomy and attitudes toward condom use for prevention of HIV/AIDS in four culturally diverse countries. Findings from the logistic regression indicate that labor force participation, individual autonomy, and decision making significantly increased the odds of always using a condom during sex in all countries. Promoting prevention policies highlighting women's autonomy may contribute in reducing the spread of HIV infection.

Rethinking autonomy: decision making between patient and surgeon in advanced illnesses

PubMed Central

Hinshaw, Daniel B.

2016-01-01

Patients with advanced illness such as advanced stage cancer presenting with the need for possible surgical intervention can be some of the most challenging cases for a surgeon. Often there are multiple factors influencing the decisions made. For patients they are facing not just the effects of the disease on their body, but the stark realization that the disease will also limit their life. Not only are these factors a consideration when patients are making decisions, but also the desire to make the decision that is best for themselves, the autonomous decision. Also included in this process for the patient facing the possible need for an intervention is the surgeon. While patient autonomy remains one of the main principles within medicine, guiding treatment decisions, there is also the surgeon’s autonomy to be considered. Surgeons determine if there is even a possible intervention to be offered to patients, a decision making process that respects surgeons’ autonomous choices and includes elements of paternalism as surgeons utilize their expertise to make decisions. Included in the treatment decisions that are made and the care of the patient is the impact patients’ outcomes have on the surgeon, the inherent drive to be the best for the patient and desire for good outcomes for the patient. While both the patient’s and surgeon’s autonomy are a dynamic interface influencing decision making, the main goal for the patient facing a palliative procedure is that of making treatment decisions based on the concept of shared decision making, always giving primary consideration to the patient’s goals and values. Lastly, regardless of the decision made, it is the responsibility of surgeons to their patients to be a source of support through this challenging time. PMID:27004224

Biases and Heuristics in Decision Making and Their Impact on Autonomy.

PubMed

Blumenthal-Barby, J S

2016-05-01

Cognitive scientists have identified a wide range of biases and heuristics in human decision making over the past few decades. Only recently have bioethicists begun to think seriously about the implications of these findings for topics such as agency, autonomy, and consent. This article aims to provide an overview of biases and heuristics that have been identified and a framework in which to think comprehensively about the impact of them on the exercise of autonomous decision making. I analyze the impact that these biases and heuristics have on the following dimensions of autonomy: understanding, intentionality, absence of alienating or controlling influence, and match between formally autonomous preferences or decisions and actual choices or actions.

Preferences for autonomy in end-of-life decision making in modern Korean society.

PubMed

Kim, Su Hyun

2015-03-01

The demand for autonomy in medical decision making is increasing among Korean people, but it is not well known why some people prefer autonomy in decision making but others do not. The aim of this study was to determine the extent to which Korean adults wished to exercise autonomy in the process of decision making regarding end-of-life treatment and to determine whether economic issues and family functioning, in particular, were associated with preferences for participation in decision making in Korean people. This study was a cross-sectional correlational study using a survey. Data were collected using structured questionnaires from 354 patients or their families who visited ambulatory departments at two general hospitals in South Korea, recruited by the proportionate quota sampling method. Data analysis was performed using multinomial logistic regression analyses. The study was approved by the hospitals' directors and the ethics committee of Kyungpook National University Hospital. Written informed consent was given by all participants. A majority of Korean people wanted to make autonomous decisions regarding treatment at the end of life. Preferences for autonomous decision making regarding end-of-life treatment, rather than relying on family, showed a significant increase in association with poor family functioning and low income. Results of this study suggested the necessity for development of alternatives to a dominant traditional "family-centered" approach in Korean people, in order to enhance end-of-life decision making for people who wish to take an active role in the decision-making process. Healthcare providers need to examine not only patients' preferred decision-making style but also any reasons for their choice, in particular, family conflict and financial burden. © The Author(s) 2014.

[The medical autonomy of elderly in Taiwan].

PubMed

Chen, Kai-Li; Chen, Ching-Huey

2014-10-01

The elderly population is increasing rapidly in Taiwan. With the average life expectancy on the rise, the elderly have become major consumers of healthcare products and services. Factors that influence respect for autonomy, a core value of medical ethics, may be related to family, society, and the medical culture. Especially in patients who are already elderly, aging causes declines in physical, mental and societal capacities. Practicing a respect for patient autonomy is particularly challenging for healthcare professionals in Taiwan due the unique culture background of elderly Taiwanese patients. This article reviews and integrates the literature related to the issue of patient autonomy and elaborates on medical decision-making among elderly patients in Taiwan in the contexts of: the disadvantages faced by the elderly, the background of Chinese culture, and the current medical decision-making environment. A few suggestions are proposed to help preserve the medical-decision-making autonomy of elderly patients in Taiwan.

Parental Autonomy Support in Two Cultures: The Moderating Effects of Adolescents' Self-Construals.

PubMed

Marbell-Pierre, Kristine N; Grolnick, Wendy S; Stewart, Andrew L; Raftery-Helmer, Jacquelyn N

2017-10-23

Parental autonomy support has been related to positive adolescent outcomes, however, its relation to outcomes in collectivist cultural groups is unclear. This study examined relations of specific autonomy supportive behaviors and outcomes among 401 adolescents (M age  = 12.87) from the United States (N = 245) and collectivist-oriented Ghana (N = 156). It also examined whether adolescents' self-construals moderated the relations of specific types of autonomy support with outcomes. Factor analyses indicated two types of autonomy support: perspective taking/open exchange and allowance of decision making/choice. In both countries, perspective taking/open exchange predicted positive outcomes, but decision making/choice only did so in the United States. With regard to moderation, the more independent adolescents' self-construals, the stronger the relations of decision making/choice to parental controllingness and school engagement. © 2017 The Authors. Child Development © 2017 Society for Research in Child Development, Inc.

Are Gains in Decision-Making Autonomy during Early Adolescence Beneficial for Emotional Functioning? The Case of the United States and China

ERIC Educational Resources Information Center

Qin, Lili; Pomerantz, Eva M.; Wang, Qian

2009-01-01

This research examined the role of children's decision-making autonomy in their emotional functioning during early adolescence in the United States and China. Four times over the 7th and 8th grades, 825 American and Chinese children (M = 12.73 years) reported on the extent to which they versus their parents make decisions about issues children…

The Effect of Wilderness Therapy on Adolescents' Cognitive Autonomy and Self-Efficacy: Results of a Non-Randomized Trial

ERIC Educational Resources Information Center

Margalit, Daniella; Ben-Ari, Amichai

2014-01-01

Background: Adolescents participate in decision-making processes involving risky behaviors. Management of these important decisions may be promoted by enhancing adolescents' self-efficacy beliefs and cognitive autonomy. Objective: In order to elucidate the value of wilderness therapy to the successful management of decision making processes among…

Whole mind and shared mind in clinical decision-making.

PubMed

Epstein, Ronald Mark

2013-02-01

To review the theory, research evidence and ethical implications regarding "whole mind" and "shared mind" in clinical practice in the context of chronic and serious illnesses. Selective critical review of the intersection of classical and naturalistic decision-making theories, cognitive neuroscience, communication research and ethics as they apply to decision-making and autonomy. Decision-making involves analytic thinking as well as affect and intuition ("whole mind") and sharing cognitive and affective schemas of two or more individuals ("shared mind"). Social relationships can help processing of complex information that otherwise would overwhelm individuals' cognitive capacities. Medical decision-making research, teaching and practice should consider both analytic and non-analytic cognitive processes. Further, research should consider that decisions emerge not only from the individual perspectives of patients, their families and clinicians, but also the perspectives that emerge from the interactions among them. Social interactions have the potential to enhance individual autonomy, as well as to promote relational autonomy based on shared frames of reference. Shared mind has the potential to result in wiser decisions, greater autonomy and self-determination; yet, clinicians and patients should be vigilant for the potential of hierarchical relationships to foster coercion or silencing of the patient's voice. Copyright © 2012 Elsevier Ireland Ltd. All rights reserved.

The Mother's Autonomy in Decision Making (MADM) scale: Patient-led development and psychometric testing of a new instrument to evaluate experience of maternity care.

PubMed

Vedam, Saraswathi; Stoll, Kathrin; Martin, Kelsey; Rubashkin, Nicholas; Partridge, Sarah; Thordarson, Dana; Jolicoeur, Ganga

2017-01-01

To develop and validate a new instrument that assesses women's autonomy and role in decision making during maternity care. Through a community-based participatory research process, service users designed, content validated, and administered a cross-sectional quantitative survey, including 31 items on the experience of decision-making. Pregnancy experiences (n = 2514) were reported by 1672 women who saw a single type of primary maternity care provider in British Columbia. They described care by a midwife, family physician or obstetrician during 1, 2 or 3 maternity care cycles. We conducted psychometric testing in three separate samples. We assessed reliability, item-to-total correlations, and the factor structure of the The Mothers' Autonomy in Decision Making (MADM) scale. We report MADM scores by care provider type, length of prenatal appointments, preferences for role in decision-making, and satisfaction with experience of decision-making. The MADM scale measures a single construct: autonomy in decision-making during maternity care. Cronbach alphas for the scale exceeded 0.90 for all samples and all provider groups. All item-to-total correlations were replicable across three samples and exceeded 0.7. Eigenvalue and scree plots exhibited a clear 90-degree angle, and factor analysis generated a one factor scale. MADM median scores were highest among women who were cared for by midwives, and 10 or more points lower for those who saw physicians. Increased time for prenatal appointments was associated with higher scale scores, and there were significant differences between providers with respect to average time spent in prenatal appointments. Midwifery care was associated with higher MADM scores, even during short prenatal appointments (<15 minutes). Among women who preferred to lead decisions around their care (90.8%), and who were dissatisfied with their experience of decision making, MADM scores were very low (median 14). Women with physician carers were consistently more likely to report dissatisfaction with their involvement in decision making. The Mothers Autonomy in Decision Making (MADM) scale is a reliable instrument for assessment of the experience of decision making during maternity care. This new scale was developed and content validated by community members representing various populations of childbearing women in BC including women from vulnerable populations. MADM measures women's ability to lead decision making, whether they are given enough time to consider their options, and whether their choices are respected. Women who experienced midwifery care reported greater autonomy than women under physician care, when engaging in decision-making around maternity care options. Differences in models of care, professional education, regulatory standards, and compensation for prenatal visits between midwives and physicians likely affect the time available for these discussions and prioritization of a shared decision making process. The MADM scale reflects person-driven priorities, and reliably assesses interactions with maternity providers related to a person's ability to lead decision-making over the course of maternity care.

Does maternal autonomy influence feeding practices and infant growth in rural India?

PubMed Central

Shroff, Monal R.; Griffiths, Paula L.; Suchindran, Chirayath; Nagalla, Balakrishna; Vazir, Shahnaz; Bentley, Margaret E.

2011-01-01

The high prevalence of child under-nutrition remains a profound challenge in the developing world. Maternal autonomy was examined as a determinant of breast feeding and infant growth in children 3 to 5 months of age. Cross-sectional baseline data on 600 mother-infant pairs were collected in 60 villages in rural Andhra Pradesh, India. The mothers were enrolled in a longitudinal randomized behavioral intervention trial. In addition to anthropometric and demographic measures, an autonomy questionnaire was administered to measure different dimensions of autonomy (e.g. decision-making, freedom of movement, financial autonomy, and acceptance of domestic violence). We conducted confirmatory factor analysis on maternal autonomy items and regression analyses on infant breast feeding and growth after adjusting for socioeconomic and demographic variables, and accounting for infant birth weight, infant morbidity, and maternal nutritional status. Results indicated that mothers with higher financial autonomy were more likely to breastfeed 3–5 month old infants. Mothers with higher participation in decision-making in households had infants that were less underweight and less wasted. These results suggest that improving maternal financial and decision-making autonomy could have a positive impact on infant feeding and growth outcomes. PMID:21742425

Does maternal autonomy influence feeding practices and infant growth in rural India?

PubMed

Shroff, Monal R; Griffiths, Paula L; Suchindran, Chirayath; Nagalla, Balakrishna; Vazir, Shahnaz; Bentley, Margaret E

2011-08-01

The high prevalence of child under-nutrition remains a profound challenge in the developing world. Maternal autonomy was examined as a determinant of breast feeding and infant growth in children 3-5 months of age. Cross-sectional baseline data on 600 mother-infant pairs were collected in 60 villages in rural Andhra Pradesh, India. The mothers were enrolled in a longitudinal randomized behavioral intervention trial. In addition to anthropometric and demographic measures, an autonomy questionnaire was administered to measure different dimensions of autonomy (e.g. decision-making, freedom of movement, financial autonomy, and acceptance of domestic violence). We conducted confirmatory factor analysis on maternal autonomy items and regression analyses on infant breast feeding and growth after adjusting for socioeconomic and demographic variables, and accounting for infant birth weight, infant morbidity, and maternal nutritional status. Results indicated that mothers with higher financial autonomy were more likely to breastfeed 3-5 month old infants. Mothers with higher participation in decision-making in households had infants that were less underweight and less wasted. These results suggest that improving maternal financial and decision-making autonomy could have a positive impact on infant feeding and growth outcomes. Published by Elsevier Ltd.

Association between women's autonomy and family planning outcome in couples residing in Isfahan.

PubMed

Kohan, Shahnaz; Talebian, Ferdos; Ehsanpour, Soheila

2014-09-01

One of the important factors in the prediction of family planning outcome is paying attention to women's role in decision making concerning fertility and household affairs. With the improvement of women's status and autonomy, their control over fertility is expected to increase. The present study aimed to investigate the association between women's autonomy and family planning outcome of the couples residing in Isfahan. This is cross-sectional study. Two hundred and seventy women of childbearing age, eligible for family planning and residing in Isfahan, were selected through random cluster sampling and they filled a researcher-made questionnaire. Women's autonomy was measured with the questions on their decision-making autonomy concerning household affairs and physical mobility autonomy. The association between women's autonomy and family planning outcome was analyzed through statistical methods. The results showed that the mean of women's decision-making, physical mobility, and general autonomy was 50. Women's autonomy had a direct significant association with the type of contraception method (P = 0.01) and the length of usage of their present contraception method (P = 0.04) as well as where they received family planning services (P = 0.02). Analysis of data revealed women with higher autonomy used a more efficient contraception method and continued their contraception method for a longer time, which leads to improvement of couples' family planning outcome. Therefore, family planning services should be planned and provided with women's autonomy under consideration.

[Decision making in the elderly: which tools for its evaluation by the clinician?].

PubMed

Hommet, Caroline; Constans, Thierry; Atanasova, Boriana; Mondon, Karl

2010-09-01

Numerous decision-making situations occur in the activities of daily living. The consequences of the decision-making capacity disturbances may have a great impact on the patient's autonomy, financial management, and his or her reaction to a diagnosis as well as the ability to accept a therapeutic option or give informed consent. Decision-making is a complex and multi-dimensional process and brings into play attention, memory and executive functions, which are processed in the prefrontal cortex, particularly vulnerable in aging. A better comprehension of the mechanisms of decision-making, and of the resulting social consequences of their dysfunction may improve autonomy of the elderly. Unfortunately, we still lack appropriate tools to explore decision-making in routine practice.

Learner Autonomy in a Task-Based 3D World and Production

ERIC Educational Resources Information Center

Collentine, Karina

2011-01-01

This study contributes to the research on learner autonomy by examining the relationship between Little's (1991) notions of "independent action" and "decision-making", input, and L2 production in computer-assisted language learning (CALL). Operationalizing "independent action" and "decision-making" with Dam's (1995) definition that focuses on…

Health care decision making autonomy of women from rural districts of Southern Ethiopia: a community based cross-sectional study

PubMed Central

Alemayehu, Mihiretu; Meskele, Mengistu

2017-01-01

Introduction Millions of women have little health care decision making autonomy in many cultures and tribes. African women are often perceived to have little participation in health care decisions. However, little has been investigated to identify factors contributing to decision making autonomy. Hence, it is important to obtain information on the contributing factors of decision making autonomy and disparities across different socio-cultural contexts. Methodology A cross-sectional study was conducted in Wolaita and Dawro zones, Southern Ethiopia from February to March 2015. A total of 967 women were selected through multistage sampling. A survey was administered face-to-face through an interview format. EpiData v1.4.4.0 and SPSS version 20 were used to enter and analyze data, respectively. Proportions and means were used to describe the study population. Variables with P-value <0.2 in bivariate analysis were selected for multivariable regression. Finally, variables with P-value <0.05 in multivariable logistic regressions were identified as independent predictors. Odds ratios along with confidence intervals were used to determine the presence of association. Result It was determined that 58.4% of women have autonomy, while 40.9% of study participants’ health care decisions were made by their husbands. The husband’s education (adjusted odds ratio [AOR] =1.91 [1.10, 3.32]), wealth index (AOR =0.62 [0.42, 0.92]), age (AOR =2.42 [1.35, 4.32] and AOR =7 [3.45, 14.22]), family size (AOR =0.53 [0.33, 0.85] and AOR =0.42 [0.23, 0.75]), and occupation (AOR =1.66 [1.14, 2.41]), were predictors of health care decision making autonomy. Conclusion Even though every woman has the right to participate in her own health care decision making, more than two fifths of them have no role in making health care decisions about their own health. Husbands play a major role in making health care decisions about their wives. A comprehensive strategy needs to be implemented in order to empower women, as well as to challenge the traditional male dominance. Special attention has to be given to women living in rural areas in order to reduce their dependency through education and income generating activities. PMID:28458582

Health care decision making autonomy of women from rural districts of Southern Ethiopia: a community based cross-sectional study.

PubMed

Alemayehu, Mihiretu; Meskele, Mengistu

2017-01-01

Millions of women have little health care decision making autonomy in many cultures and tribes. African women are often perceived to have little participation in health care decisions. However, little has been investigated to identify factors contributing to decision making autonomy. Hence, it is important to obtain information on the contributing factors of decision making autonomy and disparities across different socio-cultural contexts. A cross-sectional study was conducted in Wolaita and Dawro zones, Southern Ethiopia from February to March 2015. A total of 967 women were selected through multistage sampling. A survey was administered face-to-face through an interview format. EpiData v1.4.4.0 and SPSS version 20 were used to enter and analyze data, respectively. Proportions and means were used to describe the study population. Variables with P -value <0.2 in bivariate analysis were selected for multivariable regression. Finally, variables with P -value <0.05 in multivariable logistic regressions were identified as independent predictors. Odds ratios along with confidence intervals were used to determine the presence of association. It was determined that 58.4% of women have autonomy, while 40.9% of study participants' health care decisions were made by their husbands. The husband's education (adjusted odds ratio [AOR] =1.91 [1.10, 3.32]), wealth index (AOR =0.62 [0.42, 0.92]), age (AOR =2.42 [1.35, 4.32] and AOR =7 [3.45, 14.22]), family size (AOR =0.53 [0.33, 0.85] and AOR =0.42 [0.23, 0.75]), and occupation (AOR =1.66 [1.14, 2.41]), were predictors of health care decision making autonomy. Even though every woman has the right to participate in her own health care decision making, more than two fifths of them have no role in making health care decisions about their own health. Husbands play a major role in making health care decisions about their wives. A comprehensive strategy needs to be implemented in order to empower women, as well as to challenge the traditional male dominance. Special attention has to be given to women living in rural areas in order to reduce their dependency through education and income generating activities.

Mother–Adolescent Agreement Regarding Decision-Making Autonomy: A Longitudinal Comparison of Families of Adolescents with and without Spina Bifida

PubMed Central

Devine, Katie A.; Wasserman, Rachel M.; Gershenson, Lily S.; Essner, Bonnie S.

2011-01-01

Objective Longitudinal comparison of mother and adolescent agreement regarding decision-making autonomy for adolescents with and without spina bifida (SB). Methods Forty-two mother–adolescent dyads of adolescents with SB and 55 comparison dyads reported on who was responsible for decision-making across five waves of data collection, beginning at age 8 or 9 years through age 16 or 17 years. Results The proportion of tasks that dyads agreed were decided by adolescents increased over time for both samples beginning at age 12 or 13 years, but appeared to be delayed by roughly two years for youth with SB and was lower for youth with SB from lower socioeconomic (SES) backgrounds. Mothers and adolescents with low SES demonstrated higher proportions of tasks that dyads agreed were decided by mothers. Conclusions SB and low SES are risk factors for lower levels of agreed-upon decision-making autonomy. Future studies should examine how parent–adolescent agreement regarding autonomy relates to psychosocial outcomes. PMID:20943730

Modifying autonomy--a concept grounded in nurses' experiences of moral decision-making in psychiatric practice.

PubMed Central

Lützén, K; Nordin, C

1994-01-01

Fourteen experienced psychiatric nurses participated in a pilot study aimed at describing the experiential aspect of making decisions for the patient. In-depth interviews focused on conflicts, were transcribed, coded, and categorized according to the Grounded Theory method. The theoretical construct, 'modifying autonomy' and its dimensions, such as being aware of the patient's vulnerability, caring for and caring about the patient, were identified. The findings in this study make clear the need for further research into the experiential aspect of ethical decision-making in psychiatric practice. PMID:8083870

Association between women's autonomy and family planning outcome in couples residing in Isfahan

PubMed Central

Kohan, Shahnaz; Talebian, Ferdos; Ehsanpour, Soheila

2014-01-01

Background: One of the important factors in the prediction of family planning outcome is paying attention to women's role in decision making concerning fertility and household affairs. With the improvement of women's status and autonomy, their control over fertility is expected to increase. The present study aimed to investigate the association between women's autonomy and family planning outcome of the couples residing in Isfahan. Materials and Methods: This is cross-sectional study. Two hundred and seventy women of childbearing age, eligible for family planning and residing in Isfahan, were selected through random cluster sampling and they filled a researcher-made questionnaire. Women's autonomy was measured with the questions on their decision-making autonomy concerning household affairs and physical mobility autonomy. The association between women's autonomy and family planning outcome was analyzed through statistical methods. Results: The results showed that the mean of women's decision-making, physical mobility, and general autonomy was 50. Women's autonomy had a direct significant association with the type of contraception method (P = 0.01) and the length of usage of their present contraception method (P = 0.04) as well as where they received family planning services (P = 0.02). Conclusions: Analysis of data revealed women with higher autonomy used a more efficient contraception method and continued their contraception method for a longer time, which leads to improvement of couples’ family planning outcome. Therefore, family planning services should be planned and provided with women's autonomy under consideration. PMID:25400671

The Mother’s Autonomy in Decision Making (MADM) scale: Patient-led development and psychometric testing of a new instrument to evaluate experience of maternity care

PubMed Central

Vedam, Saraswathi; Stoll, Kathrin; Martin, Kelsey; Rubashkin, Nicholas; Partridge, Sarah; Thordarson, Dana; Jolicoeur, Ganga

2017-01-01

Shared decision making (SDM) is core to person-centered care and is associated with improved health outcomes. Despite this, there are no validated scales measuring women’s agency and ability to lead decision making during maternity care. Objective To develop and validate a new instrument that assesses women’s autonomy and role in decision making during maternity care. Design Through a community-based participatory research process, service users designed, content validated, and administered a cross-sectional quantitative survey, including 31 items on the experience of decision-making. Setting and participants Pregnancy experiences (n = 2514) were reported by 1672 women who saw a single type of primary maternity care provider in British Columbia. They described care by a midwife, family physician or obstetrician during 1, 2 or 3 maternity care cycles. We conducted psychometric testing in three separate samples. Main outcome measures We assessed reliability, item-to-total correlations, and the factor structure of the The Mothers’ Autonomy in Decision Making (MADM) scale. We report MADM scores by care provider type, length of prenatal appointments, preferences for role in decision-making, and satisfaction with experience of decision-making. Results The MADM scale measures a single construct: autonomy in decision-making during maternity care. Cronbach alphas for the scale exceeded 0.90 for all samples and all provider groups. All item-to-total correlations were replicable across three samples and exceeded 0.7. Eigenvalue and scree plots exhibited a clear 90-degree angle, and factor analysis generated a one factor scale. MADM median scores were highest among women who were cared for by midwives, and 10 or more points lower for those who saw physicians. Increased time for prenatal appointments was associated with higher scale scores, and there were significant differences between providers with respect to average time spent in prenatal appointments. Midwifery care was associated with higher MADM scores, even during short prenatal appointments (<15 minutes). Among women who preferred to lead decisions around their care (90.8%), and who were dissatisfied with their experience of decision making, MADM scores were very low (median 14). Women with physician carers were consistently more likely to report dissatisfaction with their involvement in decision making. Discussion The Mothers Autonomy in Decision Making (MADM) scale is a reliable instrument for assessment of the experience of decision making during maternity care. This new scale was developed and content validated by community members representing various populations of childbearing women in BC including women from vulnerable populations. MADM measures women’s ability to lead decision making, whether they are given enough time to consider their options, and whether their choices are respected. Women who experienced midwifery care reported greater autonomy than women under physician care, when engaging in decision-making around maternity care options. Differences in models of care, professional education, regulatory standards, and compensation for prenatal visits between midwives and physicians likely affect the time available for these discussions and prioritization of a shared decision making process. Conclusion The MADM scale reflects person-driven priorities, and reliably assesses interactions with maternity providers related to a person’s ability to lead decision-making over the course of maternity care. PMID:28231285

Relational autonomy or undue pressure? Family's role in medical decision-making.

PubMed

Ho, Anita

2008-03-01

The intertwining ideas of self-determination and well-being have received tremendous support in western bioethics. They have been used to reject medical paternalism and to justify patients' rights to give informed consent (or refusal) and execute advanced directives. It is frequently argued that everyone is thoroughly unique, and as patients are most knowledgeable of and invested in their own interests, they should be the ones to make voluntary decisions regarding their care. Two results of the strong focus on autonomy are the rejection of the image of patients as passive care recipients and the suspicion against paternalistic influence anyone may have on patients' decision-making process. Although the initial focus in western bioethics was on minimizing professional coercion, there has been a steady concern of family's involvement in adult patients' medical decision-making. Many worry that family members may have divergent values and priorities from those of the patients, such that their involvement could counter patients' autonomy. Those who are heavily involved in competent patients' decision-making are often met with suspicion. Patients who defer to their families are sometimes presumed to be acting out of undue pressure. This essay argues for a re-examination of the notions of autonomy and undue pressure in the contexts of patienthood and relational identity. In particular, it examines the characteristics of families and their role in adult patients' decision-making. Building on the feminist conception of the relational self and examining the context of contemporary institutional medicine, this paper argues that family involvement and consideration of family interests can be integral in promoting patients' overall agency. It argues that, in the absence of abuse and neglect, respect for autonomy and agency requires clinicians to abide by patients' expressed wishes.

Effects of increased overnight supervision on resident education, decision-making, and autonomy.

PubMed

Haber, Lawrence A; Lau, Catherine Y; Sharpe, Bradley A; Arora, Vineet M; Farnan, Jeanne M; Ranji, Sumant R

2012-10-01

New supervisory regulations highlight the challenge of balancing housestaff supervision and autonomy. To better understand the impact of increased supervision on residency training, we investigated housestaff perceptions of education, autonomy, and clinical decision-making before and after implementation of an in-hospital, overnight attending physician (nocturnist). We established a nocturnist program in July 2010 at our academic, tertiary care medical center. We administered pre-surveys and post-surveys of internal medicine residents on night float rotation during the 2010-2011 academic year. We surveyed residents before and after experiencing the nocturnist program. Housestaff reported an increase in the clinical value of the night float rotation (3.95 vs 4.27, P = 0.01) and the adequacy of overnight supervision (3.65 vs 4.30, P < 0.0001) without a change in decision-making autonomy (4.35 vs 4.45, P = 0.44). Trainees agreed that nocturnist supervision positively impacted patient outcomes (3.79 vs 4.30, P = 0.002). Housestaff contacted attendings more frequently for transfers from outside facilities (2.00 vs 3.20, P = 0.006), during adverse events (2.51 vs 3.25, P = 0.04), prior to ordering invasive diagnostics (1.75 vs 2.76, P = 0.004), and prior to vasopressor use (1.52 vs 2.40, P = 0.004). Residents' fear of revealing knowledge gaps and desire to make decisions independently did not change. Increased overnight supervision enhanced the clinical value of the night float rotation, increased rates of attending contact during critical clinical decision-making, and improved perception of patient care. These changes occurred without a decrease in housestaff's perceived decision-making autonomy. Copyright © 2012 Society of Hospital Medicine.

[Boundaries of the autonomy of local health administration: innovation, creativity and evidence-based decision-making].

PubMed

Silva, Silvio Fernandes da; Souza, Nathan Mendes; Barreto, Jorge Otávio Maia

2014-11-01

The scope of this article was to identify the boundaries of the autonomy of local administration in the context of the federal pact in the Brazilian Unified Health System and the importance and potential for promoting innovation, creativity and evidence-based decision-making by local governments. The methodology used was to ask questions that favored dialogue with the specific literature to identify the influence of centrally-formulated policies in spaces of local autonomy and then to identify strategies to foster innovation, creativity and the systematic use of evidence-based research in health policy implementation. A gradual reduction in municipal decision-making autonomy was detected due to increased financial commitment of the municipalities resulting from responsibilities assumed, albeit with the possibility of reverting this trend in the more recent context. Some determinants and challenges for the dissemination of innovative practices were analyzed and some relevant national and international experiences in this respect were presented. The conclusion drawn is that it is possible to make local decision-making more effective provided that initiatives are consolidated to promote this culture and the formulation and implementation of evidence-based health policies.

It's money that matters: the financial context of ethical decision-making in modern biomedicine.

PubMed

Hedgecoe, Adam M

2006-09-01

While the importance of patient autonomy is widely acknowledged and discussed in the bioethics literature, clinicians' autonomy, their ability to make the best choices about patients' care free from outside interference, is far less debated. This paper takes one form of external influence over clinical decisions - the cost of drugs - and applies it to a specific case, that of HER2 positive breast cancer and the use of the drug Herceptin in the UK. Drawing on interviews with clinicians, researchers and policymakers, I explore the way financial decisions about Herceptin shape clinicians' autonomy, and how clinicians as individuals and as professional groups respond to these limits and seek to provide treatment to the highest number of the most deserving patients they can. The point of this paper is not to castigate bioethicists for misguidedly focusing on patient autonomy but point out that clinicians' autonomy may be so circumscribed by external factors that it may make no sense to speak of their actions as stemming from ethical decisions. At the same time, I suggest that financial constraints create areas at the margin of clinical practice which are deserving of bioethical consideration.

76 FR 55357 - Floor-Standing, Metal-Top Ironing Tables and Certain Parts Thereof From the People's Republic of...

Federal Register 2010, 2011, 2012, 2013, 2014

2011-09-07

...) whether the respondent has autonomy from the government in making decisions regarding the selection of its...) the respondent has autonomy from government in making decisions regarding the selection of management... the surrogate value of by-products sold from NV because the surrogate financial statements on the...

75 FR 55759 - Floor-Standing, Metal-Top Ironing Tables and Certain Parts Thereof From the People's Republic of...

Federal Register 2010, 2011, 2012, 2013, 2014

2010-09-14

... autonomy from the government in making decisions regarding the selection of its management; and (4) whether... Hardware has autonomy from government in making decisions regarding the selection of management, and (4... financial statements on the record of this administrative review contain no references to the treatment of...

Autonomy, evidence and intuition: nurses and decision-making.

PubMed

Traynor, Michael; Boland, Maggie; Buus, Niels

2010-07-01

This paper is a report of a study conducted to examine how nurses represent professional clinical decision-making processes, and to determine what light Jamous and Peloille's 'Indeterminacy/Technicality ratio' concept can shed on these representations. Classic definitions of professional work feature autonomy of decision-making and control over the field of work. Sociologists Jamous and Peloille have described professional work as being high in 'indeterminacy' (the use of tacit judgements) relative to technicality (activity able to be codified). The rise of the evidence-based practice movement has been seen as increasing the realm of technical decision-making in healthcare, and it is relevant to analyse nurses' professional discourse and study how they respond to this increase. Three focus groups with qualified nurses attending post-qualifying courses at a London university were held in 2008. Participants were asked to talk about influences on their decision-making. The discussions were tape-recorded, transcribed and subjected to discourse analysis. Participants described their decision-making as influenced by both indeterminate and technical features. They acknowledged useful influences from both domains, but pointed to their personal 'experience' as the final arbiter of decision-making. Their accounts of decision-making created a sense of professional autonomy while at the same time protecting it against external critique. Pre- and post-registration nurse education could encourage robust discussion of the definition and roles of 'irrational' aspects of decision-making and how these might be understood as components of credible professional practice.

Nurses' autonomy in end-of-life situations in intensive care units.

PubMed

Paganini, Maria Cristina; Bousso, Regina Szylit

2015-11-01

The intensive care unit environment focuses on interventions and support therapies that prolong life. The exercise by nurses of their autonomy impacts on perception of the role they assume in the multidisciplinary team and on their function in the intensive care unit context. There is much international research relating to nurses' involvement in end-of-life situations; however, there is a paucity of research in this area in Brazil. In the Brazilian medical scenario, life support limitation generated a certain reluctance of a legal nature, which has now become unjustifiable with the publication of a resolution by the Federal Medical Council. In Brazil, the lack of medical commitments to end-of-life care is evident. To understand the process by which nurses exercise autonomy in making end-of-life decisions in intensive care units. Symbolic Interactionism and Corbin and Strauss theory methodology were used for this study. Data were collected through single audio-recorded qualitative interviews with 14 critical care nurses. The comparative analysis of the data has permitted the understanding of the meaning of nurse's experience in exercising autonomy relating to end-of-life decision-making. Institutional ethics approval was obtained for data collection. Participants gave informed consent. All data were anonymized. The results revealed that nurses experience the need to exercise autonomy in intensive care units on a daily basis. Their experience expressed by the process of increase opportunities to exercise autonomy is conditioned by the pressure of the intensive care unit environment, in which nurses can grow, feel empowered, and exercise their autonomy or else can continuously depend on the decisions made by other professionals. Nurses exercise their autonomy through care. They work to create new spaces at the same time that they acquire new knowledge and make decisions. Because of the complexity of the end-of-life situation, nurses must adopt a proactive attitude that inserts them into the decision-making process. © The Author(s) 2014.

Women's household decision-making autonomy and contraceptive behavior among Bangladeshi women.

PubMed

Rahman, Md Mosfequr; Mostofa, Md Golam; Hoque, Md Aminul

2014-03-01

Women's autonomy is a potentially important but less studied indicator of using contraception among women as well as ability to control their fertility. This study explores women's decision-making autonomy as a potential indicator of the use of contraception in Bangladesh. This cross-sectional study utilizes data from the Bangladesh Demographic Health Survey (BDHS) 2007. Information of 8456 currently married and non-pregnant women aged 15-40 years are analyzed to meet up the objective of this study. The mean age of the respondents is 27.19 years and majority of the respondents are from rural areas (62.7%) and also Muslim (90.2%). A large number of women (26.1%) and their husbands (29.0%) have no education and 27.2% respondents were working at the time of interview. The mean number of living children is 2.14. 48.9% of the respondents are currently using a modern method of contraception. More than one-third women are not involved in their household decision-making. Results of this study indicate that household decision-making autonomy is significantly associated with current use of modern contraception, future intention to use contraception and discuss contraception with husband. This measure of women's autonomy provides additional independent explanatory power of contraceptive behavior net of some other socio-demographic variables. This study argues in favor of increasing women's autonomy to increase contraception using rate in this population. Copyright © 2013 Elsevier B.V. All rights reserved.

Shared Mind: Communication, Decision Making, and Autonomy in Serious Illness

PubMed Central

Epstein, Ronald M.; Street, Richard L.

2011-01-01

In the context of serious illness, individuals usually rely on others to help them think and feel their way through difficult decisions. To help us to understand why, when, and how individuals involve trusted others in sharing information, deliberation, and decision making, we offer the concept of shared mind—ways in which new ideas and perspectives can emerge through the sharing of thoughts, feelings, perceptions, meanings, and intentions among 2 or more people. We consider how shared mind manifests in relationships and organizations in general, building on studies of collaborative cognition, attunement, and sensemaking. Then, we explore how shared mind might be promoted through communication, when appropriate, and the implications of shared mind for decision making and patient autonomy. Next, we consider a continuum of patient-centered approaches to patient-clinician interactions. At one end of the continuum, an interactional approach promotes knowing the patient as a person, tailoring information, constructing preferences, achieving consensus, and promoting relational autonomy. At the other end, a transactional approach focuses on knowledge about the patient, information-as-commodity, negotiation, consent, and individual autonomy. Finally, we propose that autonomy and decision making should consider not only the individual perspectives of patients, their families, and members of the health care team, but also the perspectives that emerge from the interactions among them. By drawing attention to shared mind, clinicians can observe in what ways they can promote it through bidirectional sharing of information and engaging in shared deliberation. PMID:21911765

Shared mind: communication, decision making, and autonomy in serious illness.

PubMed

Epstein, Ronald M; Street, Richard L

2011-01-01

In the context of serious illness, individuals usually rely on others to help them think and feel their way through difficult decisions. To help us to understand why, when, and how individuals involve trusted others in sharing information, deliberation, and decision making, we offer the concept of shared mind-ways in which new ideas and perspectives can emerge through the sharing of thoughts, feelings, perceptions, meanings, and intentions among 2 or more people. We consider how shared mind manifests in relationships and organizations in general, building on studies of collaborative cognition, attunement, and sensemaking. Then, we explore how shared mind might be promoted through communication, when appropriate, and the implications of shared mind for decision making and patient autonomy. Next, we consider a continuum of patient-centered approaches to patient-clinician interactions. At one end of the continuum, an interactional approach promotes knowing the patient as a person, tailoring information, constructing preferences, achieving consensus, and promoting relational autonomy. At the other end, a transactional approach focuses on knowledge about the patient, information-as-commodity, negotiation, consent, and individual autonomy. Finally, we propose that autonomy and decision making should consider not only the individual perspectives of patients, their families, and members of the health care team, but also the perspectives that emerge from the interactions among them. By drawing attention to shared mind, clinicians can observe in what ways they can promote it through bidirectional sharing of information and engaging in shared deliberation.

Ethical Dimensions of Autonomy in Long-Term Care.

ERIC Educational Resources Information Center

Collopy, Bart J.

1990-01-01

Long-term care of the elderly raises conflicts between personal autonomy and well-being. Assessments of decision-making capacity and definitions of negative and positive autonomy pose value-laden dilemmas for caregivers. (SK)

Ethical issues in communication of diagnosis and end-of-life decision-making process in some of the Romanian Roma communities.

PubMed

Roman, Gabriel; Enache, Angela; Pârvu, Andrada; Gramma, Rodica; Moisa, Ştefana Maria; Dumitraş, Silvia; Ioan, Beatrice

2013-08-01

Medical communication in Western-oriented countries is dominated by concepts of shared decision-making and patient autonomy. In interactions with Roma patients, these behavioral patterns rarely seem to be achieved because the culture and ethnicity have often been shown as barriers in establishing an effective and satisfying doctor-patient relationship. The study aims to explore the Roma's beliefs and experiences related to autonomy and decision-making process in the case of a disease with poor prognosis. Forty-eight Roma people from two Romanian counties participated in semi-structured interviews, conducted by a research team from the University of Medicine and Pharmacy of Iasi. Participants were recruited among the chronically ill patients and caregivers. The Roma community opposes informing the terminal patients about their condition, the "silence conspiracy" being widely practiced. The family fully undertakes the right of decision making, thus minimizing the patient's autonomy. We identified ethical dilemmas concerning autonomy, lack of patients' real decision-making power, and paternalistic attitudes exerted firstly by the family and, on demand, by the physician. Instead, the Roma patient benefits from a very active support network, being accompanied at the hospital by numerous relatives. The patient's right to make autonomous decisions promoted in the Western countries and stipulated by the Romanian law has diminished value in the Roma community. For the Roma, the understanding of dignity is not simply individual and personal, but it is closely related to their cultural particularities. Ignoring their cultural values could create conflicts between healthcare providers and community.

Patient Autonomy for the Management of Chronic Conditions: A Two-Component Re-conceptualization

PubMed Central

Naik, Aanand D.; Dyer, Carmel B.; Kunik, Mark E.; McCullough, Laurence B.

2010-01-01

The clinical application of the concept of patient autonomy has centered on the ability to deliberate and make treatment decisions (decisional autonomy) to the virtual exclusion of the capacity to execute the treatment plan (executive autonomy). However, the one-component concept of autonomy is problematic in the context of multiple chronic conditions. Adherence to complex treatments commonly breaks down when patients have functional, educational, and cognitive barriers that impair their capacity to plan, sequence, and carry out tasks associated with chronic care. The purpose of this article is to call for a two-component re-conceptualization of autonomy and to argue that the clinical assessment of capacity for patients with chronic conditions should be expanded to include both autonomous decision making and autonomous execution of the agreed-upon treatment plan. We explain how the concept of autonomy should be expanded to include both decisional and executive autonomy, describe the biopsychosocial correlates of the two-component concept of autonomy, and recommend diagnostic and treatment strategies to support patients with deficits in executive autonomy. PMID:19180389

Internet Use Frequency and Patient-Centered Care: Measuring Patient Preferences for Participation Using the Health Information Wants Questionnaire

PubMed Central

Wang, Mo; Feldman, Robert; Zhou, Le

2013-01-01

Background The Internet is bringing fundamental changes to medical practice through improved access to health information and participation in decision making. However, patient preferences for participation in health care vary greatly. Promoting patient-centered health care requires an understanding of the relationship between Internet use and a broader range of preferences for participation than previously measured. Objective To explore (1) whether there is a significant relationship between Internet use frequency and patients’ overall preferences for obtaining health information and decision-making autonomy, and (2) whether the relationships between Internet use frequency and information and decision-making preferences differ with respect to different aspects of health conditions. Methods The Health Information Wants Questionnaire (HIWQ) was administered to gather data about patients’ preferences for the (1) amount of information desired about different aspects of a health condition, and (2) level of decision-making autonomy desired across those same aspects. Results The study sample included 438 individuals: 226 undergraduates (mean age 20; SD 2.15) and 212 community-dwelling older adults (mean age 72; SD 9.00). A significant difference was found between the younger and older age groups’ Internet use frequencies, with the younger age group having significantly more frequent Internet use than the older age group (younger age group mean 5.98, SD 0.33; older age group mean 3.50, SD 2.00; t 436=17.42, P<.01). Internet use frequency was positively related to the overall preference rating (γ=.15, P<.05), suggesting that frequent Internet users preferred significantly more information and decision making than infrequent Internet users. The relationships between Internet use frequency and different types of preferences varied: compared with infrequent Internet users, frequent Internet users preferred more information but less decision making for diagnosis (γ=.57, P<.01); more information and more decision-making autonomy for laboratory test (γ=.15, P<.05), complementary and alternative medicine (γ=.32, P<.01), and self-care (γ=.15, P<.05); and less information but more decision-making autonomy for the psychosocial (γ=-.51, P<.01) and health care provider (γ=-.27, P<.05) aspects. No significant difference was found between frequent and infrequent Internet users in their preferences for treatment information and decision making. Conclusions Internet use frequency has a positive relationship with the overall preferences for obtaining health information and decision-making autonomy, but its relationship with different types of preferences varies. These findings have important implications for medical practice. PMID:23816979

Autonomy and Pluralism in the Education System: A Case Study of Spanish Public Schools in the International Context

ERIC Educational Resources Information Center

Sancho Gargallo, Miguel Angel

2013-01-01

As governments strive to improve outcomes in education, and respond to the needs of an ever more diverse population, autonomy has gained increased prominence in national and international spheres. In the context of education, autonomy refers to the decision-making capacity of a school, and to the manner and areas over which those decisions can be…

First- and second-born adolescents' decision-making autonomy throughout adolescence.

PubMed

Campione-Barr, Nicole; Lindell, Anna K; Short, Stephen D; Greer, Kelly Bassett; Drotar, Scott D

2015-12-01

First- and second-born adolescents' and their parents' perceptions of adolescents' decision-making autonomy were compared from ages 12 to 19 in a longitudinal sample of 145 predominantly White, middle class families. Utilizing a multivariate, multilevel modeling approach, differences in perceptions of adolescents' autonomy between parents and each adolescent, as well as by social-cognitive domain were examined. The present study found that when comparing parents' perceptions of their children at the same age, second-borns were granted more autonomy regarding conventional issues than first-borns during early adolescence, but by later adolescence first-borns were granted more autonomy regarding prudential issues than second-borns. However, comparisons between adolescents' and siblings' perceptions showed no differences. Potential reasons for, and implications of, differences in perceptions of adolescent autonomy are discussed. Copyright © 2015 The Foundation for Professionals in Services for Adolescents. Published by Elsevier Ltd. All rights reserved.

Conflicting contraceptive norms for men: equal responsibility versus women's bodily autonomy.

PubMed

James-Hawkins, Laurie; Dalessandro, Cristen; Sennott, Christie

2018-05-15

Most research investigating how men and women in heterosexual relationships negotiate contraceptive use focuses on the women's point of view. Using a sample of 44 interviews with men attending a western US university, this study examines norms governing men's participation in contraceptive use and pregnancy prevention and their responses to those norms. The paper demonstrates how competing norms around sexual health decision-making and women's bodily autonomy contribute to unintended outcomes that undermine young people's quest for egalitarian sexual relationships. While men largely agree that responsibility for sexual health decision-making should be shared with women, they also believe that women should have power over their own bodies and sexual health. However, the coexistence of these two competing norms - which call for both equal responsibility in decision-making and women's bodily autonomy - results in a disconnect between men saying that sexual health decision-making should be equal, but not always participating equally. Thus, men largely give contraceptive decision-making power over to women, putting the burden of pregnancy prevention onto women and letting men off the hook. It is concluded that men's negotiation of these competing norms reinforces unequal power and inequality in sexual relationships.

Factors influencing older people's experiences of participation in autonomous decisions concerning their daily care in their own homes: a review of the literature.

PubMed

Fjordside, Solveig; Morville, Annette

2016-12-01

To review the literature on how older people perceive opportunities and limitations with regard to participation in autonomous decisions concerning their daily care in their own homes. The perception of personal control plays a critical role in an older person's health and well-being. Little is known about factors that facilitate or hinder older people's autonomous decision-making in their own homes. The study has been carried out as a literature review. The following databases were used: CINAHL, PubMed, PsykInfo, Cochrane, SweMed, Embase. Research studies range from 2009 to 2014. The review includes 12 publications. Four core themes are generated: older person's autonomy in their own home; autonomy and relationship; the balance between autonomy and dependency; older people's autonomy and the organisation of home care. Older people have a strong inner drive to maintain autonomy in their own home. The autonomy is challenged when the person becomes increasingly dependent on help. The relationship with carers is of vital importance with regard to the person's ability to make autonomous decisions. The organisation of home care restricts older people' scope for autonomy. Older people's own perspectives on autonomous decisions can contribute to the ongoing debate about how nursing care can be developed with respect to their autonomy. Nursing care demands attention to an older person's desire for autonomy despite dependency. A framework for systematic ethical discussions among carers may improve awareness about factors that facilitate or hinder good personalised care. The organisation of nursing care needs to be shaped in line with best practice for older people. © 2016 John Wiley & Sons Ltd.

ONE SIZE FITS ALL? ON PATIENT AUTONOMY, MEDICAL DECISION-MAKING, AND THE IMPACT OF CULTURE.

PubMed

Gilbar, Roy; Miola, José

2015-01-01

While both medical law and medical ethics have developed in a way that has sought to prioritise patient autonomy, it is less clear whether it has done so in a way that enhances the self-determination of patients from non-western backgrounds. In this article, we consider the desire of some patients from non-western backgrounds for family involvement in decision-making and argue that this desire is not catered for effectively in either medical law or medical ethics. We examine an alternative approach based on relational autonomy that might serve both to allow such patients to exercise their self-determination while still allowing them to include family members in the decision-making process. © The Author 2014. Published by Oxford University Press; all rights reserved. For Permissions, please email: journals.permissions@oup.com.

[Mechanisms for allocating financial resources after decentralization in the state of Jalisco].

PubMed

Pérez-Núñez, Ricardo; Arredondo-López, Armando; Pelcastre, Blanca

2006-01-01

To analyze, from the decision maker's perspective, the financial resource allocation process of the health services of the state of Jalisco (SSJ, per its abbreviation in spanish), within the context of decentralization. Through a qualitative approximation using semi-structured individual interviews of key personnel in managerial positions as the method for compiling information, the experience of the SSJ in financial resource allocation was documented. From September to November 2003, the perception of managers and administrators regarding their level of autonomy in decision-making was explored as well as the process they follow for the allocation of financial resources, in order to identify the criteria they use and their justifications. From the point of view of decision-makers, autonomy of the SSJ has increased considerably since decentralization was implemented, although the degree of decision-making freedom remains limited due mainly to high adminstrative costs associated with salaries. In this sense, the implications attributable to labor situations that are still centralized are evident. Some innovative systems for financial resource allocation have been established in the SSJ for the sanitary regions and hospitals based upon administrative-managerial and productivity incentives. Adjustments were also made for degree of marginalization and population lag, under the equity criterion. General work conditions and decision-making autonomy of the sanitary regions constitute outstanding aspects pending decentralization. Although decentralization has granted more autonomy to the SSJ, the level of decision-making freedom for allocating financial resources has been held within the highest hierarchical levels.

Couple's concordance and discordance in household decision-making and married women's use of modern contraceptives in Bangladesh.

PubMed

Uddin, Jalal; Hossin, Muhammad Zakir; Pulok, Mohammad Habibullah

2017-11-09

Although a large body of studies documents that women's autonomy in the household is associated with better reproductive health outcomes, these studies typically examined autonomy only from women's point of view. The current study employs husband's and wife's perspectives together to examine the relationship between the decision-making arrangements in the household and the women's use of modern contraceptives in Bangladesh. The study used the couple dataset of 2007 Bangladesh Demographic and Health Survey. The sample was comprised of 3336 married couples. Binary logistic regression models were used to examine the associations between the selected items on household decision-making and the use of modern contraceptives. Our results indicate that the couples disagree considerably as to who in the household exercises the decision-making power. The pattern of decision-making regarding visiting family and relatives emerged as an important predictor of use of modern contraceptives in the multivariate regression analysis. The results suggest that compared to the couple's concordant joint decision-making, the husband-only decision-making is associated with lower odds of contraceptives use (OR 0.49; 95% CI 0.28-0.85). Only a small part of this association is explained by spousal communication about family planning issues while the socio-demographic correlates hardly affected the association. On the contrary, the wife-only decision-making did not result in increased contraceptives use (OR 0.71; 95% CI 0.45-1.13). The study findings imply that women's greater autonomy may not necessarily result in improved reproductive health behavior, and therefore, a balance of power in the spousal relationship is warranted.

Factors predicting desired autonomy in medical decisions: Risk-taking and gambling behaviors

PubMed Central

Fortune, Erica E; Shotwell, Jessica J; Buccellato, Kiara; Moran, Erin

2016-01-01

This study investigated factors that influence patients’ desired level of autonomy in medical decisions. Analyses included previously supported demographic variables in addition to risk-taking and gambling behaviors, which exhibit a strong relationship with overall health and decision-making, but have not been investigated in conjunction with medical autonomy. Participants (N = 203) completed measures on Amazon’s Mechanical Turk, including two measures of autonomy. Two hierarchical regressions revealed that the predictors explained a significant amount of variance for both measures, but the contribution of predictor variables was incongruent between models. Possible causes for this incongruence and implications for patient–physician interactions are discussed. PMID:28070406

An economic theory of patient decision-making.

PubMed

Stewart, Douglas O; DeMarco, Joseph P

2005-01-01

Patient autonomy, as exercised in the informed consent process, is a central concern in bioethics. The typical bioethicist's analysis of autonomy centers on decisional capacity--finding the line between autonomy and its absence. This approach leaves unexplored the structure of reasoning behind patient treatment decisions. To counter that approach, we present a microeconomic theory of patient decision-making regarding the acceptable level of medical treatment from the patient's perspective. We show that a rational patient's desired treatment level typically departs from the level yielding an absence of symptoms, the level we call ideal. This microeconomic theory demonstrates why patients have good reason not to pursue treatment to the point of absence of physical symptoms. We defend our view against possible objections that it is unrealistic and that it fails to adequately consider harm a patient may suffer by curtailing treatment. Our analysis is fruitful in various ways. It shows why decisions often considered unreasonable might be fully reasonable. It offers a theoretical account of how physician misinformation may adversely affect a patient's decision. It shows how billing costs influence patient decision-making. It indicates that health care professionals' beliefs about the 'unreasonable' attitudes of patients might often be wrong. It provides a better understanding of patient rationality that should help to ensure fuller information as well as increased respect for patient decision-making.

Empowerment Failure: How Shortcomings in Physician Communication Unwittingly Undermine Patient Autonomy.

PubMed

Ubel, Peter A; Scherr, Karen A; Fagerlin, Angela

2017-11-01

Many health care decisions depend not only upon medical facts, but also on value judgments-patient goals and preferences. Until recent decades, patients relied on doctors to tell them what to do. Then ethicists and others convinced clinicians to adopt a paradigm shift in medical practice, to recognize patient autonomy, by orienting decision making toward the unique goals of individual patients. Unfortunately, current medical practice often falls short of empowering patients. In this article, we reflect on whether the current state of medical decision making effectively promotes patients' health care goals. We base our reflections, in part, on research in which we observed physicians making earnest efforts to partner with patients in making treatment decisions, but still struggling to empower patients-failing to communicate clearly to patients about decision-relevant information, overwhelming patients with irrelevant information, overlooking when patients' emotions made it hard to engage in choices, and making recommendations before discussing patients' goals.

If times change, should we throw away the hearthstone? Exploring (Dis) continuities in autonomy and decision-making in the lives of Ghanaian women

PubMed Central

Dzokoto, Vivian A. A.; Darkwah, Akosua K.

2014-01-01

This paper attempts to investigate continuities and discontinuities between traditional and modern representations of womanhood and female gender roles focusing primarily on family and work settings. Using approaches informed by Sociology, Cultural Psychology, and African Studies, the paper explores traditional views of womanhood encapsulated in (and also transmitted intergenerationally) through proverbs. This customary perspective is contrasted with the results of the Everyday Lives Survey from the Pathways of Women's Empowerment Ghana project. The survey investigated the nature of everyday life– education, work, decision making, access to institutions, and autonomy in relationships—in six hundred (600) adult women in both rural and urban communities in three regions of Ghana. We argue that although the times are changing, there have only been modest disruptions in the lives of Ghanaian women as far as issues of autonomy and decision-making in are concerned. PMID:25506334

Children's Decision-Making Involvement About Research Participation: Associations With Perceived Fairness and Self-Efficacy.

PubMed

Miller, Victoria A; Feudtner, Chris; Jawad, Abbas F

2017-04-01

The primary objective of this study was to examine the associations of children's involvement in decisions about research participation with their perceptions of the decision-making process and self-efficacy. Participants were children (ages 8-17) who enrolled in research studies in the prior 2 months. Children completed a questionnaire that yielded three decision-making involvement subscales: Researcher Engages Child, Researcher Supports Autonomy, and Child Participates. Children reported on fairness of the decision-making process and health-related decision self-efficacy. After adjusting for age, higher scores on Researcher Engages Child were associated with greater self-efficacy, and higher scores on Researcher Supports Autonomy were associated with greater perceived fairness. These data underscore the potential importance of researcher-child interactions about research participation when assent is sought, including proactively involving children in the decision by asking for their opinions and communicating their central role in the decision, which are likely to be more meaningful to children than receiving information or signing a form.

Factor structure of the autonomy preference index in people with severe mental illness.

PubMed

Bonfils, Kelsey A; Adams, Erin L; Mueser, Kim T; Wright-Berryman, Jennifer L; Salyers, Michelle P

2015-08-30

People vary in the amount of control they want to exercise over decisions about their healthcare. Given the importance of patient-centered care, accurate measurement of these autonomy preferences is critical. This study aimed to assess the factor structure of the Autonomy Preference Index (API), used widely in general healthcare, in individuals with severe mental illness. Data came from two studies of people with severe mental illness (N=293) who were receiving mental health and/or primary care/integrated care services. Autonomy preferences were assessed with the API regarding both psychiatric and primary care services. Confirmatory factor analysis was used to evaluate fit of the hypothesized two-factor structure of the API (decision-making autonomy and information-seeking autonomy). Results indicated the hypothesized structure for the API did not adequately fit the data for either psychiatric or primary care services. Three problematic items were dropped, resulting in adequate fit for both types of treatment. These results suggest that with relatively minor modifications the API has an acceptable factor structure when asking people with severe mental illness about their preferences to be involved in decision-making. The modified API has clinical and research utility for this population in the burgeoning field of autonomy in patient-centered healthcare. Copyright © 2015 Elsevier Ireland Ltd. All rights reserved.

How shared is shared decision-making? A care-ethical view on the role of partner and family.

PubMed

van Nistelrooij, Inge; Visse, Merel; Spekkink, Ankana; de Lange, Jasmijn

2017-09-01

The aim of shared decision-making (SDM) is to provide information to patients in order to enable them to decide autonomously and freely about treatment together with the doctor, without interference, force or coercion by others. Relatives may be considered as hindering or impeding a patient's own decision. Qualitative-empirical research into lived experience of SDM of patients with cancer, however, problematises the patient's autonomy when facing terminal illness and the need to make decisions regarding treatment. Confronted with this difficulty, this contribution tries to think through patients' dependency of others, and make their autonomy more relational, drawing on care-ethical critics of a one-sided view of autonomy and on Ricoeur's view of the fundamentally intersubjective, relational self. We aim to conceptualise relatives not as a third party next to the doctor and the patient, but as co-constituents of the patient's identity and as such present in the decision-making process from the outset. What is more, partners and the family may be of inestimable help in retrieving the patient's identity in line with the past, present and possible future. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/.

Controlled Autonomy: Novice Principals' Schema for District Control and School Autonomy

ERIC Educational Resources Information Center

Weiner, Jennie M.; Woulfin, Sarah L.

2017-01-01

Purpose: The purpose of this paper is to gain insights into how a group of novice principals, all in schools that deployed principles of autonomy as mechanisms for improvement, conceptualized what the authors label "controlled autonomy"--a condition in which school leaders are expected to both make site-based decisions and be accountable…

Supported Decision Making: A Synthesis of the Literature across Intellectual Disability, Mental Health, and Aging

ERIC Educational Resources Information Center

Shogren, Karrie A.; Wehmeyer, Michael L.; Lassmann, Heather; Forber-Pratt, Anjali J.

2017-01-01

Supported decision making (SDM) has begun to receive significant attention as means to enable people to exercise autonomy and self-determination over decisions about their life. Practice frameworks that can be used to promote the provision of supports for decision making are needed. This paper integrates the literature across intellectual and…

Women's household decision-making autonomy and safer sex negotiation in Nigeria: An analysis of the Nigeria Demographic and Health Survey.

PubMed

Sano, Yujiro; Sedziafa, Alice P; Vercillo, Siera; Antabe, Roger; Luginaah, Isaac

2018-02-01

Although married women's safer sex negotiation with their husbands is critical in reducing new HIV infections in Nigeria, its linkage to women's household decision-making autonomy is less explored in Nigeria. Drawing data from the 2013 Nigeria Demographic and Health Survey and using the logistic regression technique, we examined the associations between women's household decision-making autonomy and two indicators of the ability to engage in safer sex including whether married women 1) can refuse sex and 2) ask for condom use during sexual intercourse with husbands. Findings indicate that 64% and 41% of married women can refuse sex and ask for condom use, respectively. While the impact of women's household decision-making autonomy on the ability to refuse sex remained statistically significant after controlling for theoretically relevant variables (OR = 1.15; p < 0.001), its impact on the ability to ask for condom use became weakly significant once socioeconomic variables were controlled (OR = 1.03; p < 0.1). Based on these results, we have two suggestions. First, it may be important that marital-based policies and counselling promote environments in which married women can establish equal power relations with their husbands. Second, it is also important to eliminate structural barriers that hinder married women's economic opportunities in Nigeria.

Patient decision making competence: outlines of a conceptual analysis.

PubMed

Welie, J V; Welie, S P

2001-01-01

In order to protect patients against medical paternalism, patients have been granted the right to respect of their autonomy. This right is operationalized first and foremost through the phenomenon of informed consent. If the patient withholds consent, medical treatment, including life-saving treatment, may not be provided. However, there is one proviso: The patient must be competent to realize his autonomy and reach a decision about his own care that reflects that autonomy. Since one of the most important patient rights hinges on the patient's competence, it is crucially important that patient decision making incompetence is clearly defined and can be diagnosed with the greatest possible degree of sensitivity and, even more important, specificity. Unfortunately, the reality is quite different. There is little consensus in the scientific literature and even less among clinicians and in the law as to what competence exactly means, let alone how it can be diagnosed reliably. And yet, patients are deemed incompetent on a daily basis, losing the right to respect of their autonomy. In this article, we set out to fill that hiatus by beginning at the very beginning, the literal meaning of the term competence. We suggest a generic definition of competence and derive four necessary conditions of competence. We then transpose this definition to the health care context and discuss patient decision making competence.

Factors associated with institutional delivery in Ghana: the role of decision-making autonomy and community norms.

PubMed

Speizer, Ilene S; Story, William T; Singh, Kavita

2014-11-27

In Ghana, the site of this study, the maternal mortality ratio and under-five mortality rate remain high indicating the need to focus on maternal and child health programming. Ghana has high use of antenatal care (95%) but sub-optimum levels of institutional delivery (about 57%). Numerous barriers to institutional delivery exist including financial, physical, cognitive, organizational, and psychological and social. This study examines the psychological and social barriers to institutional delivery, namely women's decision-making autonomy and their perceptions about social support for institutional delivery in their community. This study uses cross-sectional data collected for the evaluation of the Maternal and Newborn Referrals Project of Project Fives Alive in Northern and Central districts of Ghana. In 2012 and 2013, a total of 2,527 women aged 15 to 49 were surveyed at baseline and midterm (half in 2012 and half in 2013). The analysis sample of 1,606 includes all women who had a birth three years prior to the survey date and who had no missing data. To determine the relationship between institutional delivery and the two key social barriers-women's decision-making autonomy and community perceptions of institutional delivery-we used multi-level logistic regression models, including cross-level interactions between community-level attitudes and individual-level autonomy. All analyses control for the clustered survey design by including robust standard errors in Stata 13 statistical software. The findings show that women who are more autonomous and who perceive positive attitudes toward facility delivery (among women, men and mothers-in-law) were more likely to deliver in a facility. Moreover, the interactions between autonomy and community-level perceptions of institutional delivery among men and mothers-in-law were significant, such that the effect of decision-making autonomy is more important for women who live in communities that are less supportive of institutional delivery compared to communities that are more supportive. This study builds upon prior work by using indicators that provide a more direct assessment of perceived community norms and women's decision-making autonomy. The findings lead to programmatic recommendations that go beyond individuals and engaging the broader network of people (husbands and mothers-in-law) that influence delivery behaviors.

Decision-Making Involvement of Individuals with Dementia

ERIC Educational Resources Information Center

Menne, Heather L.; Whitlatch, Carol J.

2007-01-01

Purpose: Research underscores how autonomy and decision-making involvement may help to enhance the quality of life of older adults; however, individuals with dementia are often excluded from decision making that is related to their daily functioning. In this study we use a modified version of the Stress Process Model to consider the stress process…

Choosing to Decline: Finding Common Ground through the Perspective of Shared Decision Making.

PubMed

Megregian, Michele; Nieuwenhuijze, Marianne

2018-05-18

Respectful communication is a key component of any clinical relationship. Shared decision making is the process of collaboration that occurs between a health care provider and patient in order to make health care decisions based upon the best available evidence and the individual's preferences. A midwife and woman (and her support persons) engage together to make health care decisions, using respectful communication that is based upon the best available evidence and the woman's preferences, values, and goals. Supporting a woman's autonomy, however, can be particularly challenging in maternity care when recommended treatments or interventions are declined. In the past, the real or perceived increased risk to a woman's health or that of her fetus as a result of that choice has occasionally resulted in coercion. Through the process of shared decision making, the woman's autonomy may be supported, including the choice to decline interventions. The case presented here demonstrates how a shared decision-making framework can support the health care provider-patient relationship in the context of informed refusal. © 2018 by the American College of Nurse-Midwives.

Exploring Principal Autonomy in Charter, Private, and Public Schools

ERIC Educational Resources Information Center

Adamson, Linda

2012-01-01

This qualitative multiple case study concerned how school principals in charter, private, and public school settings experience autonomy, based on the schools' governance structures and accountability systems. Principal autonomy was defined as the authority that school principals exercise to lead staff effectively, to make decisions based on…

Euthanasia--he illusion of autonomy.

PubMed

Hartling, O J

2006-03-01

The paper deals with some of the more common arguments used for the legalisation of voluntary euthanasia. It looks at these arguments from an ethical and philosophical point of view. First, the argument that to offer a person the possibility of euthanasia is to respect that person's autonomy is questionable. Can a person's decision on euthanasia be really autonomous? If euthanasia were legal everybody would be conscious of this option: the patient, the doctor, the family and the nursing staff. Thus, there could be indirect pressure on the patient to make a decision. The choice is meant to be free but the patient is not free not to make the choice. Secondly, a choice that seeks to alleviate suffering and thus improve life by annihilating it is irrational. Thirdly, autonomy as to one's own death is hardly exercised freely. Even an otherwise competent person may not be competent in deciding on his own death on account of despair, hopelessness, fear or maybe a feeling of being weak, superfluous and unwanted. This is a very uncertain base for decision-making, especially in the irrevocable decision of euthanasia. Finally, a competent person usually makes any choice in a responsible way and after due consideration; a 'good' decision should consider and respect the wishes and feelings of others. This will be no less the case in making a decision on the so-called free choice of euthanasia. Thus 'normal' behaviour in decision making will only add to the tendency of the already depressed person to feel a burden on his family, the staff and even on society.

Political orientation and perceptions of adolescent autonomy and judicial culpability.

PubMed

Reppucci, N Dickon; Scott, Elizabeth; Antonishak, Jill

2009-01-01

This study probed general attitudes about processing youths in adult criminal court across a range of offenses, explored attitudes about age of autonomous decision-making for several activities outside the criminal justice context, and examined the interaction between these two realms. The major finding was that adults favor adult punishment of adolescent offenders at younger ages than they favor autonomy in other decision-making contexts; the gap is widest for those who identify themselves as conservatives. 2009 John Wiley & Sons, Ltd.

Women empowerment and use of contraception

PubMed Central

Patrikar, S.R.; Basannar, D.R.; Seema Sharma, Maj

2014-01-01

Background Use of contraception is influenced by many processes most by the women's empowerment. Women's decision making power and their autonomy within the household is the most important factor affecting contraceptive use. This paper aims to analyze the relationship between these two indicators of women's empowerment and the use of contraception. Methods This cross sectional study was conducted by personally interviewing 385 currently married women selected by systematic sampling on a pretested and validated questionnaire. Two indices, women's decision-making power index and women's autonomy index, were constructed and association with contraception use analyzed. Results & Conclusion The study gives the evidence that decision making power is low in the respondents with 48.2% (95% CI 43.34, 53.31) of them having low level of power, while 27.6% (95% CI 23.24, 32.16) have medium level and 3.6% (95% CI 2.08, 5.88) having high level of power. 22.4% (95% CI 18.39, 26.70) of women do not have any autonomy as against 43.9% (95% CI 38.99, 48.89) with low level, 25% (95% CI 20.80, 29.44) with medium autonomy and 8.7% (95% CI 6.29, 11.98) scoring above 7 (high level of autonomy). In the study population it was found that 273 (70.7%, 95% CI 66.2, 75.28) of the respondents were using contraceptives. Women's autonomy, years of marriage and number of children were significant variables. PMID:25378779

Understanding critical care nurses' autonomy in Jordan.

PubMed

Maharmeh, Mahmoud

2017-10-02

Purpose The aim of this study was to describe Jordanian critical care nurses' experiences of autonomy in their clinical practice. Design/methodology/approach A descriptive correlational design was applied using a self-reported cross-sectional survey. A total of 110 registered nurses who met the eligibility criteria participated in this study. The data were collected by a structured questionnaire. Findings A majority of critical care nurses were autonomous in their decision-making and participation in decisions to take action in their clinical settings. Also, they were independent to develop their own knowledge. The study identified that their autonomy in action and acquired knowledge were influenced by a number of factors such as gender and area of practice. Practical implications Nurse's autonomy could be increased if nurses are made aware of the current level of autonomy and explore new ways to increase empowerment. This could be offered through classroom lectures that concentrate on the concept of autonomy and its implication in practice. Nurses should demonstrate autonomous nursing care at the same time in the clinical practice. This could be done through collaboration between educators and clinical practice to help merge theory to practice. Originality/value Critical care nurses were more autonomous in action and knowledge base. This may negatively affect the quality of patient care and nurses' job satisfaction. Therefore, improving nurses' clinical decision-making autonomy could be done by the support of both hospital administrators and nurses themselves.

Shared decision-making as an existential journey: Aiming for restored autonomous capacity.

PubMed

Gulbrandsen, Pål; Clayman, Marla L; Beach, Mary Catherine; Han, Paul K; Boss, Emily F; Ofstad, Eirik H; Elwyn, Glyn

2016-09-01

We describe the different ways in which illness represents an existential problem, and its implications for shared decision-making. We explore core concepts of shared decision-making in medical encounters (uncertainty, vulnerability, dependency, autonomy, power, trust, responsibility) to interpret and explain existing results and propose a broader understanding of shared-decision making for future studies. Existential aspects of being are physical, social, psychological, and spiritual. Uncertainty and vulnerability caused by illness expose these aspects and may lead to dependency on the provider, which underscores that autonomy is not just an individual status, but also a varying capacity, relational of nature. In shared decision-making, power and trust are important factors that may increase as well as decrease the patient's dependency, particularly as information overload may increase uncertainty. The fundamental uncertainty, state of vulnerability, and lack of power of the ill patient, imbue shared decision-making with a deeper existential significance and call for greater attention to the emotional and relational dimensions of care. Hence, we propose that the aim of shared decision-making should be restoration of the patient's autonomous capacity. In doing shared decision-making, care is needed to encompass existential aspects; informing and exploring preferences is not enough. Copyright © 2016 Elsevier Ireland Ltd. All rights reserved.

Can promoting patient decision making be exclusionary? Moral expectations and cultural difference in the narratives of UK maternity clinicians.

PubMed

Davies, Myfanwy; Elwyn, Glyn; Papadopoulos, Irena; Fleming, Lon; Williams, Gareth

2009-01-01

Patient autonomy in health care decision making is increasingly advocated as a means of promoting patients' 'responsibilities' for treatments and costs. However, little is known with regard to clinicians' understanding of patients' potential responsibilities in decision making. We explore how clinicians may view decision making as a 'moral' obligation and examine how moral virtue is discursively constructed in this context and in the face of ethnic and social difference. Data reported are derived from an interview study that examined perceptions of maternity decision making among Arab Muslim women and clinicians. Results reported here are from the clinician sample which includes obstetricians, general practitioners (GPs) and midwives. Clinicians perceived that a key element of their role involved imparting relevant information to their clients and, increasingly, involving them in making autonomous decisions about their care. However, by analysing and assessing the attribution of specific cultural differences in clinicians' discussion of decision making processes with minority group women, we demonstrate how some clinicians justified their failure to promote autonomy through shared decision making with women from these groups. We will demonstrate these attributes to be those of passivity and non-rationality which entail some negative moral judgements and which have a complex relationship to gender and power

Autonomy gone awry: a cross-cultural study of parents' experiences in neonatal intensive care units.

PubMed

Orfali, Kristina; Gordon, Elisa J

2004-01-01

This paper examines parents' experiences of medical decision-making and coping with having a critically ill baby in the Neonatal Intensive Care Unit (NICU) from a cross-cultural perspective (France vs. U.S.A.). Though parents' experiences in the NICU were very similar despite cultural and institutional differences, each system addresses their needs in a different way. Interviews with parents show that French parents expressed overall higher satisfaction with the care of their babies and were better able to cope with the loss of their child than American parents. Central to the French parents' perception of autonomy and their sense of satisfaction were the strong doctor-patient relationship, the emphasis on medical certainty in prognosis versus uncertainty in the American context, and the "sentimental work" provided by the team. The American setting, characterized by respect for parental autonomy, did not necessarily translate into full parental involvement in decision-making, and it limited the rapport between doctors and parents to the extent of parental isolation. This empirical comparative approach fosters a much-needed critique of philosophical principles by underscoring, from the parents' perspective, the lack of "emotional work" involved in the practice of autonomy in the American unit compared to the paternalistic European context. Beyond theoretical and ethical arguments, we must reconsider the practice of autonomy in particularly stressful situations by providing more specific means to cope, translating the impersonal language of "rights" and decision-making into trusting, caring relationships, and sharing the responsibility for making tragic choices.

When Fairness Clashes with Personal Autonomy and Parental Authority: A Comparison of Daughters' and Mothers' Reasoning in Two Cultural Contexts in Turkey.

PubMed

Acar, Melike

2017-01-01

The author examined religious and secular daughters' and mothers' reasoning about personal autonomy, maternal authority, and moral concepts in family decision-making situations in urban Turkey. Sixty-eight daughters and 34 mothers were individually interviewed about decision-making autonomy in general issues and hypothetical daughter-mother conflicts. Results indicated participants regardless of their family status and religious background assigned more decision-making autonomy to mothers when evaluating general issues. Analysis of controversial issues as hypothetical conflicts indicated that daughters and mothers do not hold unitary social judgments about the social world that were always consistent with the norms of their community and family status. There were some religious background differences in evaluations of some conflict stories as a function of whether they evaluated the choices as moral, conventional, personal, and prudential matters. Although secular and religious participants conceptualized daughters and mothers in relational terms rather than characterizing the relations and social issues by harmony, obedience to authority, and acceptance of norms findings suggested that secular women evaluated the hypothetical adolescent-mother conflicts more consistently when the issue entails violation of a moral principle such as justice, fairness, and well-being of the other.

The Ethics of Vaccination Nudges in Pediatric Practice.

PubMed

Navin, Mark C

2017-03-01

Techniques from behavioral economics-nudges-may help physicians increase pediatric vaccine compliance, but critics have objected that nudges can undermine autonomy. Since autonomy is a centrally important value in healthcare decision-making contexts, it counts against pediatric vaccination nudges if they undermine parental autonomy. Advocates for healthcare nudges have resisted the charge that nudges undermine autonomy, and the recent bioethics literature illustrates the current intractability of this debate. This article rejects a principle to which parties on both sides of this debate sometimes seem committed: that nudges are morally permissible only if they are consistent with autonomy. Instead, I argue that, at least in the case of pediatric vaccination, some autonomy-undermining nudges may be morally justified. This is because parental autonomy in pediatric decision-making is not as morally valuable as the autonomy of adult patients, and because the interests of both the vaccinated child and other members of the community can sometimes be weighty enough to justify autonomy-infringing pediatric vaccination nudges. This article concludes with a set of worries about the effect of pediatric vaccination nudges on parent-physician relationships, and it calls on the American Academy of Pediatrics to draw on scientific and bioethics research to develop guidelines for the use of nudges in pediatric practice and, in particular, for the use of pediatric vaccination nudges.

[Why and how to promote decision-making autonomy of cancer patients?

PubMed

Mancini, Julien

2018-02-01

Involvement of patients in decision-making about their health has been promoted nationally and internationally since several years. Despite this, patient (and their relatives) participation remains insufficient and one of the objectives of the current French national cancer policy (Plan cancer 2014-2019) is to give everyone the possibility to play an active role in the management of their care. This overview focuses on decision-making autonomy of cancer patients through two main questions: why and how to promote it? After a brief review of the decision-making models described in the literature in the past decades insisting on the major role of the decisional context and the dynamic character of this context, this article presents a selection of published works which aimed to respond to those 2 questions. Copyright © 2017 Société Française du Cancer. Published by Elsevier Masson SAS. All rights reserved.

Adolescent Temperament and Parental Control in the Development of the Adolescent Decision Making in a Chilean Sample

ERIC Educational Resources Information Center

Perez, J. Carola; Cumsille, Patricio

2012-01-01

The study analyzes the way in which adolescents' temperamental characteristics interact with parental control to shape adolescent decision making development. A sample of high-school Chilean adolescents (N = 391) answered a self-report questionnaire that included measures of behavioral autonomy (the extent to which adolescents make decisions in…

An Investigation of Learner Autonomy in Turkish EFL Context

ERIC Educational Resources Information Center

Cakici, Dilek

2017-01-01

This study investigated the teachers' perceptions as to what extent learners should be involved in decision making processes concerning the general aspects of learner autonomy. The primary aim of the research was to find out learning autonomy perceptions of Turkish prospective teachers of English. It is also aimed to explore the effect of gender…

Professional autonomy.

PubMed

Aprile, A E

1998-02-01

Professional autonomy may represent the first step to implementing measures that will allow CRNAs to attain a level of independent practice consistent with their clinical and educational training. Autonomy is regarded as an essential ingredient of professionalism and confers independent function at the individual practitioner level. The principle of autonomy refers to the individual's capacity to make independent decisions based on the assumption that he or she possesses the cognitive, psychological, and emotional faculties to make rational decisions. Nursing practice meets the first two criteria of professionalism--competence and dedication to an important social good. The third criterion of professionalism, autonomy, has been a focal point for controversy since the late nineteenth century, in which obedience to supervisors and physicians remained a central focus of nursing ethics teaching until the advent of feminism in the 1970s. This article presents a thorough analysis of these concepts with some thoughts on how understanding the fundamental precepts and further research may not only help maintain the current level of CRNA professional autonomy but serve to guide us to become more autonomous in the future.

What are parents' perspectives on psychological empowerment in the MMR vaccination decision? A focus group study

PubMed Central

Fadda, Marta; Galimberti, Elisa; Carraro, Valter; Schulz, Peter J

2016-01-01

Objectives Most developed countries do not have compulsory immunisation requirements, but instead issue recommendations. Although parents are expected to make an informed, autonomous (ie, empowered) decision regarding their children's vaccinations, there is no evidence about how parents' interpret this demand nor on the latitude of their decision-making. The goal of this study is to gain insights from parents residing in a low measles-mumps-rubella (MMR) uptake area on what constitutes feelings of empowerment in the decision they have to make on their child's MMR vaccination. Design A qualitative study employing focus group interviews. Setting 11 vaccination centres and hospitals in the Province of Trento, Italy. Participants 24 mothers and 4 fathers of children for whom the MMR vaccination decision was still pending participated in 6 focus groups. Results Autonomy and competence were salient themes in relation to empowerment, and were further connected with beliefs regarding legal responsibility and ethics of freedom concerning the decision, parents' relationship with the paediatrician (trust), feelings of relevance of the decision and related stress, and seeking, avoidance, or fear of vaccination-related information. Competence was interpreted as medical knowledge and information-seeking skills, but it was also related to the extent parents perceived the paediatrician to be competent. Conclusions Since parents' interpretation of empowerment goes beyond mere perceptions of being informed and autonomous and differs across individuals, it is important that this construct be correctly interpreted and implemented by best practice, for instance by explicitly adopting a relational conception of autonomy. Knowing whether parents want to make an empowered decision and what their information and autonomy needs are might help health professionals adapt their communication about immunisation, and promote parental perception of making an informed, autonomous decision. PMID:27084284

Deciding together? Best interests and shared decision-making in paediatric intensive care.

PubMed

Birchley, Giles

2014-09-01

In the western healthcare, shared decision making has become the orthodox approach to making healthcare choices as a way of promoting patient autonomy. Despite the fact that the autonomy paradigm is poorly suited to paediatric decision making, such an approach is enshrined in English common law. When reaching moral decisions, for instance when it is unclear whether treatment or non-treatment will serve a child's best interests, shared decision making is particularly questionable because agreement does not ensure moral validity. With reference to current common law and focusing on intensive care practice, this paper investigates what claims shared decision making may have to legitimacy in a paediatric intensive care setting. Drawing on key texts, I suggest these identify advantages to parents and clinicians but not to the child who is the subject of the decision. Without evidence that shared decision making increases the quality of the decision that is being made, it appears that a focus on the shared nature of a decision does not cohere with the principle that the best interests of the child should remain paramount. In the face of significant pressures toward the displacement of the child's interests in a shared decision, advantages of a shared decision to decisional quality require elucidation. Although a number of arguments of this nature may have potential, should no such advantages be demonstrable we have cause to revise our commitment to either shared decision making or the paramountcy of the child in these circumstances.

Cancer patient decision making related to clinical trial participation: an integrative review with implications for patients' relational autonomy.

PubMed

Bell, Jennifer A H; Balneaves, Lynda G

2015-04-01

Oncology clinical trials are necessary for the improvement of patient care as they have the ability to confirm the efficacy and safety of novel cancer treatments and in so doing, contribute to a solid evidence base on which practitioners and patients can make informed treatment decisions. However, only 3-5 % of adult cancer patients enroll in clinical trials. Lack of participation compromises the success of clinical trials and squanders an opportunity for improving patient outcomes. This literature review summarizes the factors and contexts that influence cancer patient decision making related to clinical trial participation. An integrative review was undertaken within PubMed, CINAHL, and EMBASE databases for articles written between 1995 and 2012 and archived under relevant keywords. Articles selected were data-based, written in English, and limited to adult cancer patients. In the 51 articles reviewed, three main types of factors were identified that influence cancer patients' decision making about participation in clinical trials: personal, social, and system factors. Subthemes included patients' trust in their physician and the research process, undue influence within the patient-physician relationship, and systemic social inequalities. How these factors interact and influence patients' decision-making process and relational autonomy, however, is insufficiently understood. Future research is needed to further elucidate the sociopolitical barriers and facilitators of clinical trial participation and to enhance ethical practice within clinical trial enrolment. This research will inform targeted education and support interventions to foster patients' relational autonomy in the decision-making process and potentially improve clinical trial participation rates.

An investigation of the relationship between autonomy, childbirth practices, and obstetric fistula among women in rural Lilongwe District, Malawi.

PubMed

Kaplan, Julika Ayla; Kandodo, Jonathan; Sclafani, Joseph; Raine, Susan; Blumenthal-Barby, Jennifer; Norris, Alison; Norris-Turner, Abigail; Chemey, Elly; Beckham, John Michael; Khan, Zara; Chunda, Reginald

2017-06-19

Obstetric fistula is a childbirth injury caused by prolonged obstructed labor that results in destruction of the tissue wall between the vagina and bladder. Although obstetric fistula is directly caused by prolonged obstructed labor, many other factors indirectly increase fistula risk. Some research suggests that many women in rural Malawi have limited autonomy and decision-making power in their households. We hypothesize that women's limited autonomy may play a role in reinforcing childbirth practices that increase the risk of obstetric fistula in this setting by hindering access to emergency care and further prolonging obstructed labor. A medical student at Baylor College of Medicine partnered with a Malawian research assistant in July 2015 to conduct in-depth qualitative interviews in Chichewa with 25 women living within the McGuire Wellness Centre's catchment area (rural Central Lilongwe District) who had received obstetric fistula repair surgery. This study assessed whether women's limited autonomy in rural Malawi reinforces childbearing practices that increase risk of obstetric fistula. We considered four dimensions of autonomy: sexual and reproductive decision-making, decision-making related to healthcare utilization, freedom of movement, and discretion over earned income. We found that participants had limited autonomy in these domains. For example, many women felt pressured by their husbands, families, and communities to become pregnant within three months of marriage; women often needed to seek permission from their husbands before leaving their homes to visit the clinic; and women were frequently prevented from delivering at the hospital by older women in the community. Many of the obstetric fistula patients in our sample had limited autonomy in several or all of the aforementioned domains, and their limited autonomy often led both directly and indirectly to an increased risk of prolonged labor and fistula. Reducing the prevalence of fistula in Malawi requires a broad understanding of the causes of fistula, so we recommend that the relationship between women's autonomy and fistula risk undergo further investigation.

An ethical framework for pharmacy management: balancing autonomy and other principles.

PubMed

Glassman, Peter A; Schneider, Paul L; Good, Chester B

2014-04-01

Decisions to control pharmaceutical costs can cause conflicts as to what medications are covered. Such conflicts have ethical implications, however implicit, and given this fact, an ethical framework can help address them. In the following commentary, we discuss the more traditional, individual-level ethical considerations likely familiar to most clinicians. We, then, discuss population-level ethical constructs that clinicians may not as readily embrace. We also present a hypothetical cancer-care case to illustrate how imbalances in ethical foci between individual- and population-level constructs may lead to conflicts among health care actors and promote shifts in pharmaceutical decision making away from providers and toward payers, paradoxically reducing provider autonomy and hence patient autonomy. Finally, we propose a more comprehensive ethical framework to help converge individual, payer, and societal interests when making pharmaceutical use decisions. Pharmacists play a crucial role as pharmacy benefits managers and should be familiar with individual- and population-based ethical constructs.

Does School Autonomy Make Sense Everywhere? Panel Estimates from PISA. NBER Working Paper No. 17591

ERIC Educational Resources Information Center

Hanushek, Eric A.; Link, Susanne; Woessmann, Ludger

2011-01-01

Decentralization of decision-making is among the most intriguing recent school reforms, in part because countries went in opposite directions over the past decade and because prior evidence is inconclusive. We suggest that autonomy may be conducive to student achievement in well-developed systems but detrimental in low-performing systems. We…

[Autonomy and dementia Part II: autonomy and representation: a possible combination?].

PubMed

Rigaux, Natalie

2011-06-01

This paper, based on a critical review of the medico-social literature, questions the representation of patients with dementia in relation to the autonomy perspectives presented in a previous article. In the canonical perspective of autonomy (defined as a rational decision-making by a stand alone self), the surrogate is the spokeperson of the subject's wills when he was competent because he knows these wills through advance directives or assuming them via substituted judgment. Best patient's interest is then depreciated because it is focused on the present incompetent self. In the relational perspective, where autonomy is constructed through a dialogue with others, the surrogate is the present interlocutor, making the decisions with the patient and care-givers in a way varying with the disease process. He represents the subject with dementia as he was before the disease but also as he has become. Therefore, there is a continuum between autonomy and representation. Autonomy and well being are both the surrogate aims. The relational perspective allows care continuity of patients with dementia even when considered as incompetent. It offers a more balanced perspective on the patient autonomy since it is embedded in all others, and opens a richer view on what good life is, untill the end of dementia.

"It's like playing with your destiny": Bosnian immigrants' views of advance directives and end-of-life decision-making.

PubMed

Searight, H Russell; Gafford, Jennifer

2005-07-01

Patient autonomy is a primary value in US health care. It is assumed that patients want to be fully and directly informed about serious health conditions and want to engage in advance planning about medical care at the end-of-life. Written advance directives and proxy decision-makers are vehicles to promote autonomy when patients are no longer able to represent their wishes. Cross-cultural studies have raised questions about the universal acceptance of these health care values among all ethnicities. In the current investigation, Bosnian immigrants were interviewed about their views of physician-patient communication, advance directives, and locus of decision-making in serious illness. Many of the respondents indicated that they did not want to be directly informed of a serious illness. There was an expressed preference for physician- or family-based health care decisions. Advance directives and formally appointed proxies were typically seen as unnecessary and inconsistent with many respondents' personal values. The findings suggest that the value of individual autonomy and control over the health care decisions may not be applicable to cultures with a collectivist orientation.

Autonomy and Accountability: Teacher Perspectives on Evidence-Based Practice and Decision-Making for Students with Intellectual and Developmental Disabilities

ERIC Educational Resources Information Center

Greenway, Rosanne; McCollow, Meaghan; Hudson, Roxanne F.; Peck, Charles; Davis, Carol A.

2013-01-01

The purpose of this study was to examine teacher perspectives about evidence-based practices (EBP) and decision-making for students with intellectual and developmental disabilities. Given the current EBP movement, our study sought to understand practitioner definitions and perspectives on EBP and decision-making. Interview data from nine special…

Developing Survey Measures of Inequality of Autonomy in the UK

ERIC Educational Resources Information Center

Burchardt, Tania; Holder, Holly

2012-01-01

This paper explores the development of survey questions to measure autonomy, interpreted as the degree of choice and control a person has in key areas of his or her life. A review of the theoretical literature leads to a conceptualisation of autonomy as consisting of three components: (1) self-reflection, (2) active or delegated decision-making,…

Respect for Autonomy in Light of Neuropsychiatry.

PubMed

Müller, Sabine

2017-06-01

Bioethics needs an elaborated concept of autonomy based on empirical knowledge about the prerequisites of the capacity of autonomy. Whereas Beauchamp and Childress, and many other bioethicists have discussed social influences on the capacity of autonomy in depth, neurobiological influences have received less attention. A comprehensive concept of autonomy should consider both social and biological factors that can diminish the capacity of autonomy. This article focuses on neurobiological influences that can reduce the capacity of autonomy. The thesis of this article is that the integration of neuropsychiatric knowledge into the concept of autonomy is essential for (1) evaluating demands for harmful medical treatments which might be caused by a brain disease, and (2) deciding on involuntary treatments of patients who suffer from substantial lack of autonomy due to neuropsychiatric disorders. Diametrically opposed to such a comprehensive concept of the capacity of autonomy is the concept of 'liberty of illness'. In Germany, this concept is supported not only by anti-psychiatric groups but also by the Federal Constitutional Court. Several real cases demonstrate how the brain can be 'hijacked' by parasites, antibodies or technical devices. Applying the concept of 'liberty of illness' to persons whose decision-making capacity is severely affected by neuropsychiatric disorders is cynical. These patients neither chose their disease nor would refuse effective treatment if their will was not disturbed by the disease. Respect for autonomy should be understood as the positive obligation to save, support or restore the biological prerequisites of the capacity for autonomous decision-making. © 2017 John Wiley & Sons Ltd.

Shared decision-making during surgical consultation for gallstones at a safety-net hospital.

PubMed

Mueck, Krislynn M; Leal, Isabel M; Wan, Charlie C; Goldberg, Braden F; Saunders, Tamara E; Millas, Stefanos G; Liang, Mike K; Ko, Tien C; Kao, Lillian S

2018-04-01

Understanding patient perspectives regarding shared decision-making is crucial to providing informed, patient-centered care. Little is known about perceptions of vulnerable patients regarding shared decision-making during surgical consultation. The purpose of this study was to evaluate whether a validated tool reflects perceptions of shared decision-making accurately among patients seeking surgical consultation for gallstones at a safety-net hospital. A mixed methods study was conducted in a sample of adult patients with gallstones evaluated at a safety-net surgery clinic between May to July 2016. Semi-structured interviews were conducted after their initial surgical consultation and analyzed for emerging themes. Patients were administered the Shared Decision-Making Questionnaire and Autonomy Preference Scale. Univariate analyses were performed to identify factors associated with shared decision-making and to compare the results of the surveys to those of the interviews. The majority of patients (N = 30) were female (90%), Hispanic (80%), Spanish-speaking (70%), and middle-aged (45.7 ± 16 years). The proportion of patients who perceived shared decision-making was greater in the Shared Decision-Making Questionnaire versus the interviews (83% vs 27%, P < .01). Age, sex, race/ethnicity, primary language, diagnosis, Autonomy Preference Scale score, and decision for operation was not associated with shared decision-making. Contributory factors to this discordance include patient unfamiliarity with shared decision-making, deference to surgeon authority, lack of discussion about different treatments, and confusion between aligned versus shared decisions. Available questionnaires may overestimate shared decision-making in vulnerable patients suggesting the need for alternative or modifications to existing methods. Furthermore, such metrics should be assessed for correlation with patient-reported outcomes, such as satisfaction with decisions and health status. Copyright © 2017 Elsevier Inc. All rights reserved.

Establishing School Decision-Making Groups: Problems Confronted by Three Secondary Schools in Australia.

ERIC Educational Resources Information Center

Dellar, Graham B.

Central to restructuring efforts in Australia was the establishment of school decision-making groups (SDMGs), which gave school staff and community representatives more autonomy over decisions concerning educational policy and school development. This paper presents findings of a study that examined the responses of three secondary schools to the…

Reconciling the principle of patient autonomy with the practice of informed consent: decision-making about prognostication in uveal melanoma.

PubMed

Cook, Sharon A; Damato, Bertil; Marshall, Ernie; Salmon, Peter

2011-12-01

Influential views on how to protect patient autonomy in clinical care have been greatly shaped by rational and deliberative models of decision-making. Our aim was to understand how the general principle of respecting autonomy can be reconciled with the local reality of obtaining consent in a clinical situation that precludes extended deliberation. We interviewed 22 patients with intraocular melanoma who had been offered cytogenetic tumour typing to indicate whether the tumour was likely to shorten life considerably. They were interviewed before and/or up to 36 months after receiving cytogenetic results. Patients described their decision-making about the test and how they anticipated and used the results. Their accounts were analysed qualitatively, using inconsistencies at a descriptive level to guide interpretative analysis. Patients did not see a decision to be made. For those who accepted testing, their choice reflected trust of what the clinicians offered them. Patients anticipated that a good prognosis would be reassuring, but this response was not evident. Although they anticipated that a poor prognosis would enable end-of-life planning, adverse results were interpreted hopefully. In general, the meaning of the test for patients was not separable from ongoing care. Models of decision-making and associated consent procedures that emphasize patients' active consideration of isolated decision-making opportunities are invalid for clinical situations such as this. Hence, responsibility for ensuring that a procedure protects patients' interests rests with practitioners who offer it and cannot be delegated to patients. © 2010 Blackwell Publishing Ltd.

Autonomy and dependence: a discussion paper on decision-making in teenagers and young adults undergoing cancer treatment.

PubMed

Davies, Jane; Kelly, Daniel; Hannigan, Ben

2015-09-01

A discussion which aims to explore the diversity of decision-making during teenage and young adult cancer treatment. The discussion will be related to the concepts of autonomy, dependence and decision-making in this age group. The experience of cancer involves a significant series of treatment decisions. However, other non-treatment decisions also have to be made which can relate to any aspect of everyday life. These decisions occur against the backdrop of young people's disease experience. Discussion paper. A literature search for the period 1990-2013 was undertaken. This included searching the following databases: Cumulative Index for Nursing and Allied Health Literature (CINAHL), SCOPUS, Medline, DARE, Applied Social Sciences Index and Abstracts (ASSIA), (Psych Info) and The Cochrane Library. There is a lack of evidence into the experience of everyday decisions made by young people during cancer treatment. This may affect them in the form of unmet needs that nurses, or other professionals, fail to appreciate. Further exploration of how teenagers and young adults experience the range and process of decision-making during cancer treatment could be useful in helping to provide effective supportive care for this age group. © 2015 John Wiley & Sons Ltd.

Relational Capacity: Broadening the Notion of Decision-Making Capacity in Paediatric Healthcare.

PubMed

Ruhe, Katharina M; De Clercq, Eva; Wangmo, Tenzin; Elger, Bernice S

2016-12-01

Problems arise when applying the current procedural conceptualization of decision-making capacity to paediatric healthcare: Its emphasis on content-neutrality and rational cognition as well as its implicit assumption that capacity is an ability that resides within a person jeopardizes children's position in decision-making. The purpose of the paper is to challenge this dominant account of capacity and provide an alternative for how capacity should be understood in paediatric care. First, the influence of developmental psychologist Jean Piaget upon the notion of capacity is discussed, followed by an examination of Vygostky's contextualist view on children's development, which emphasizes social interactions and learning for decision-making capacity. In drawing parallels between autonomy and capacity, substantive approaches to relational autonomy are presented that underline the importance of the content of a decision. The authors then provide a relational reconceptualization of capacity that leads the focus away from the individual to include important social others such as parents and physicians. Within this new approach, the outcome of adults' decision-making processes is accepted as a guiding factor for a good decision for the child. If the child makes a choice that is not approved by adults, the new conceptualization emphasizes mutual exchange and engagement by both parties.

A safety-based decision making architecture for autonomous systems

NASA Technical Reports Server (NTRS)

Musto, Joseph C.; Lauderbaugh, L. K.

1991-01-01

Engineering systems designed specifically for space applications often exhibit a high level of autonomy in the control and decision-making architecture. As the level of autonomy increases, more emphasis must be placed on assimilating the safety functions normally executed at the hardware level or by human supervisors into the control architecture of the system. The development of a decision-making structure which utilizes information on system safety is detailed. A quantitative measure of system safety, called the safety self-information, is defined. This measure is analogous to the reliability self-information defined by McInroy and Saridis, but includes weighting of task constraints to provide a measure of both reliability and cost. An example is presented in which the safety self-information is used as a decision criterion in a mobile robot controller. The safety self-information is shown to be consistent with the entropy-based Theory of Intelligent Machines defined by Saridis.

Patient autonomy preferences among hypertensive outpatients in a primary care setting in Japan.

PubMed

Nomura, Kyoko; Ohno, Maiko; Fujinuma, Yasuki; Ishikawa, Hirono

2007-01-01

To investigate autonomy preferences and the factors to promote active patient participation in a primary care setting in Japan. Ninety-two hypertensive outpatients who consecutively visited a Japanese hospital between January and May of 2005 in Tokyo, Japan. This cross-sectional study was conducted by using a self-administered questionnaire. The main outcome measures were patient preferences for autonomy (i.e., decision-making and information-seeking preferences), measured by the Autonomy Preference Index (API). The variables studied were patient sociodemographic characteristics, physician characteristics based on patient preference (i.e., ability to communicate, extent of clinical experience, qualifications, educational background, gender, and age), and the Multidimensional Health Locus of Control. On the API scale from 0 to 100, the patients had an intermediate desire for decision-making (median: 51) and a greater desire for information (median: 95). A multivariate regression model indicated that decision-making preference increased when patients were woman and decreased as physician age increased, and information-seeking preference was positively associated with good communication skills, more extensive clinical experience, physicians of middle age, and patient beliefs that they were responsible for their own health, and was negatively associated with a preference for man physicians. Physicians may need to understand that patient autonomy preferences pertain to physician age and gender, physician communication ability and extent of clinical experience, and patient beliefs about self-responsibility toward health, and could use the information to promote reliable patient-physician relationships.

U-Form vs. M-Form: How to Understand Decision Autonomy Under Healthcare Decentralization?

PubMed Central

Bustamante, Arturo Vargas

2016-01-01

For more than three decades healthcare decentralization has been promoted in developing countries as a way of improving the financing and delivery of public healthcare. Decision autonomy under healthcare decentralization would determine the role and scope of responsibility of local authorities. Jalal Mohammed, Nicola North, and Toni Ashton analyze decision autonomy within decentralized services in Fiji. They conclude that the narrow decision space allowed to local entities might have limited the benefits of decentralization on users and providers. To discuss the costs and benefits of healthcare decentralization this paper uses the U-form and M-form typology to further illustrate the role of decision autonomy under healthcare decentralization. This paper argues that when evaluating healthcare decentralization, it is important to determine whether the benefits from decentralization are greater than its costs. The U-form and M-form framework is proposed as a useful typology to evaluate different types of institutional arrangements under healthcare decentralization. Under this model, the more decentralized organizational form (M-form) is superior if the benefits from flexibility exceed the costs of duplication and the more centralized organizational form (U-form) is superior if the savings from economies of scale outweigh the costly decision-making process from the center to the regions. Budgetary and financial autonomy and effective mechanisms to maintain local governments accountable for their spending behavior are key decision autonomy variables that could sway the cost-benefit analysis of healthcare decentralization. PMID:27694684

“I Want Her to Make Correct Decisions on Her Own:” Former Soviet Union Mothers' Beliefs about Autonomy Development

PubMed Central

Komolova, Masha; Lipnitsky, Jane Y.

2018-01-01

This qualitative study examined Former Soviet Union (FSU) mothers' explicit and implicit attitudes and parenting practices around adolescents' autonomy development. Interviews were conducted with 10 mothers who had immigrated from the FSU to the US between 10 and 25 years ago, and who had daughters between the ages of 13 and 17 years. Mothers predominantly defined autonomy in terms of adolescents' ability to carry out instrumental tasks, make correct decisions, and financially provide for themselves, but rarely mentioned psychological or emotional independence. Mothers reflected on the various aspects of autonomy emphasized in their country of origin and America, and balancing the two sets of cultural values in their parenting. Although mothers discussed attempts to adopt a less authoritarian approach to parenting than they themselves experienced as children, some mothers' controlling attitudes were revealed through a close analysis of their language. The findings provide important insights into the parenting experiences of FSU immigrant mothers, and the way in which autonomy-related processes may vary cross-culturally. Implications for parenting and clinical practice are also discussed. PMID:29434558

"I Want Her to Make Correct Decisions on Her Own:" Former Soviet Union Mothers' Beliefs about Autonomy Development.

PubMed

Komolova, Masha; Lipnitsky, Jane Y

2017-01-01

This qualitative study examined Former Soviet Union (FSU) mothers' explicit and implicit attitudes and parenting practices around adolescents' autonomy development. Interviews were conducted with 10 mothers who had immigrated from the FSU to the US between 10 and 25 years ago, and who had daughters between the ages of 13 and 17 years. Mothers predominantly defined autonomy in terms of adolescents' ability to carry out instrumental tasks, make correct decisions, and financially provide for themselves, but rarely mentioned psychological or emotional independence. Mothers reflected on the various aspects of autonomy emphasized in their country of origin and America, and balancing the two sets of cultural values in their parenting. Although mothers discussed attempts to adopt a less authoritarian approach to parenting than they themselves experienced as children, some mothers' controlling attitudes were revealed through a close analysis of their language. The findings provide important insights into the parenting experiences of FSU immigrant mothers, and the way in which autonomy-related processes may vary cross-culturally. Implications for parenting and clinical practice are also discussed.

Autonomy of children and adolescents in consent to treatment: ethical, jurisprudential and legal considerations.

PubMed

Parsapoor, Alireza; Parsapoor, Mohammad-Bagher; Rezaei, Nima; Asghari, Fariba

2014-06-01

Autonomy is usually considered as a main principle in making decisions about individuals' health. Children and particularly adolescents have the capacity to take part in medical decision-making to some extent. For the most part the parent-doctor-child/adolescent triangle sides are essentially in agreement, but this may not be true in some cases, causing physicians to face problems attempting to determine their professional duties. According to Islamic jurisprudent upon reaching the age of Taklif (15 full lunar years for boys and 9 full lunar years for girls) no one can be treated as incompetent based on mental immaturity unless his or her insanity or mental immaturity is provend Moreover the Islamic Sharia, decrees that parents should lose their authority to make medical decisions for their children, if their bad faith or imprudence is proven, in which case a fit and proper person or an institution will be appointed to make decisions in this respect based on the child's best interests.

Patient autonomy and advance care planning: a qualitative study of oncologist and palliative care physicians' perspectives.

PubMed

Johnson, Stephanie B; Butow, Phyllis N; Kerridge, Ian; Tattersall, Martin H N

2018-02-01

Patients' are encouraged to participate in advance care planning (ACP) in order to enhance their autonomy. However, controversy exists as to what it means to be autonomous and there is limited understanding of how social and structural factors may influence cancer patients' ability to exercise their autonomy. The objective of this study is to explore oncologists' and palliative care physicians' understanding of patient autonomy, how this influences reported enactment of decision-making at the end of life (EOL), and the role of ACP in EOL care. Qualitative semi-structured interviews were conducted with consultant oncologists (n = 11) and palliative medicine doctors (n = 7) working in oncology centres and palliative care units across Australia. We found that doctors generally conceptualized autonomy in terms of freedom from interference but that there was a profound disconnect between this understanding of autonomy and clinical practice in EOL decision-making. The clinicians in our study privileged care, relationships and a 'good death' above patient autonomy, and in practice were reluctant to 'abandon' their patients to total non-interference in decision-making. Patient autonomy in healthcare is bounded, as while patients were generally encouraged to express their preferences for care, medical norms about the quality and 'reasonableness' of care, the availability of services and the patients' family relationships act to enhance or limit patients' capacity to realize their preferences. While for many, this disconnect between theory and practice did not diminish the rhetorical appeal of ACP; for others, this undermined the integrity of ACP, as well as its relevance to care. For some, ACP had little to do with patient autonomy and served numerous other ethical, practical and political functions. The ethical assumptions regarding patient autonomy embedded in academic literature and policy documents relating to ACP are disconnected from the realities of clinical care. Medical norms and professional boundaries surrounding 'good deaths' have a greater influence on care than patient preference. ACP programs, therefore, may be rejected by healthcare professionals as irrelevant to care or may have the unintended consequence of limiting patient autonomy when used as a professional tool to encourage a 'right' way to die. A singular focus on bureaucratic ACP programs, which reduce patient autonomy to a 'tick box' exercise, may fail to enhance EOL care in any meaningful way.

How do patients from eastern and western Germany compare with regard to their preferences for shared decision making?

PubMed

Hamann, Johannes; Bieber, Christiane; Elwyn, Glyn; Wartner, Eva; Hörlein, Elisabeth; Kissling, Werner; Toegel, Christfried; Berth, Hendrik; Linde, Klaus; Schneider, Antonius

2012-08-01

Increasing emphasis is being placed on involving patients in decisions concerning their health. This shift towards more patient engagement by health professionals and towards more desire by patients for participation may be partly based on socio-political factors. To compare the preferences for shared decision making of patients from eastern and western Germany we analysed five patient samples (n = 2318) (general practice patients and schizophrenia patients from eastern and western Germany). Patients' role preferences for shared decisions were measured using the decision-making subscale of the Autonomy Preference Index. Patients resident in eastern Germany expressed lower preferences for shared decision making than patients in western Germany. This was true after controlling for socio-demographic variables and for patient group. The cultural imprint (e.g. western vs. former communist society) seems to have a significant influence on patients' expectations and behaviour in the medical encounter. Health services providers need to be aware that health attitudes within the same health system might vary for historical and cultural reasons. The engagement of patients in medical decisions might not be susceptible to a 'one size fits all' approach; doctors should instead aim to accommodate the individual patient's desire for autonomy.

U-Form vs. M-Form: How to Understand Decision Autonomy Under Healthcare Decentralization? Comment on "Decentralisation of Health Services in Fiji: A Decision Space Analysis".

PubMed

Bustamante, Arturo Vargas

2016-06-07

For more than three decades healthcare decentralization has been promoted in developing countries as a way of improving the financing and delivery of public healthcare. Decision autonomy under healthcare decentralization would determine the role and scope of responsibility of local authorities. Jalal Mohammed, Nicola North, and Toni Ashton analyze decision autonomy within decentralized services in Fiji. They conclude that the narrow decision space allowed to local entities might have limited the benefits of decentralization on users and providers. To discuss the costs and benefits of healthcare decentralization this paper uses the U-form and M-form typology to further illustrate the role of decision autonomy under healthcare decentralization. This paper argues that when evaluating healthcare decentralization, it is important to determine whether the benefits from decentralization are greater than its costs. The U-form and M-form framework is proposed as a useful typology to evaluate different types of institutional arrangements under healthcare decentralization. Under this model, the more decentralized organizational form (M-form) is superior if the benefits from flexibility exceed the costs of duplication and the more centralized organizational form (U-form) is superior if the savings from economies of scale outweigh the costly decision-making process from the center to the regions. Budgetary and financial autonomy and effective mechanisms to maintain local governments accountable for their spending behavior are key decision autonomy variables that could sway the cost-benefit analysis of healthcare decentralization. © 2016 by Kerman University of Medical Sciences.

What are parents' perspectives on psychological empowerment in the MMR vaccination decision? A focus group study.

PubMed

Fadda, Marta; Galimberti, Elisa; Carraro, Valter; Schulz, Peter J

2016-04-15

Most developed countries do not have compulsory immunisation requirements, but instead issue recommendations. Although parents are expected to make an informed, autonomous (ie, empowered) decision regarding their children's vaccinations, there is no evidence about how parents' interpret this demand nor on the latitude of their decision-making. The goal of this study is to gain insights from parents residing in a low measles-mumps-rubella (MMR) uptake area on what constitutes feelings of empowerment in the decision they have to make on their child's MMR vaccination. A qualitative study employing focus group interviews. 11 vaccination centres and hospitals in the Province of Trento, Italy. 24 mothers and 4 fathers of children for whom the MMR vaccination decision was still pending participated in 6 focus groups. Autonomy and competence were salient themes in relation to empowerment, and were further connected with beliefs regarding legal responsibility and ethics of freedom concerning the decision, parents' relationship with the paediatrician (trust), feelings of relevance of the decision and related stress, and seeking, avoidance, or fear of vaccination-related information. Competence was interpreted as medical knowledge and information-seeking skills, but it was also related to the extent parents perceived the paediatrician to be competent. Since parents' interpretation of empowerment goes beyond mere perceptions of being informed and autonomous and differs across individuals, it is important that this construct be correctly interpreted and implemented by best practice, for instance by explicitly adopting a relational conception of autonomy. Knowing whether parents want to make an empowered decision and what their information and autonomy needs are might help health professionals adapt their communication about immunisation, and promote parental perception of making an informed, autonomous decision. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/

Controversies in oncologist-patient communication: a nuanced approach to autonomy, culture, and paternalism.

PubMed

Cherny, Nathan I

2012-01-01

Difficult dialogues with patients facing life-changing decisions are an intrinsic part of oncologic practice and a major source of stress. Having a sophisticated approach to the concepts of autonomy, paternalism, and culture can help in addressing difficult dilemmas that arise around the issues of disclosure and decision making. This article addresses some of the most common major challenges in oncologist-patient communication with a nuanced approach to the concepts of autonomy, paternalism, and culture. It introduces the new concept of"voluntary diminished autonomy" and describes the implications this concept has for the consent process. It also attempts to bring clarity to common problems and misconceptions relating to culture, paternalism, and therapeutic privilege as these pertain to the communication practices of oncologists.

Overview of research addressing ethical dimensions of participation in traumatic stress studies: autonomy and beneficence.

PubMed

Newman, Elana; Kaloupek, Danny

2009-12-01

One element of the design of human research studies is ethically informed decision-making. Key issues include the safety, costs, and benefits of participation. Historically, much of this decision-making was based on opinion rather than formal evidence. Recently, however, investigators in the traumatic stress field have begun to collect data that are relevant to these decisions. In this article, the authors focus on issues emanating from the ethical concepts of autonomy and respect for persons and beneficence and nonmaleficence, and then summarize relevant evidence from studies with trauma-exposed individuals. Discussion addresses implications of this evidence for research practice and policy, and identifies some potentially informative data collections opportunities for future trauma studies.

Father- and Mother-Adolescent Decision-Making in Mexican-Origin Families

ERIC Educational Resources Information Center

Perez-Brena, Norma J.; Updegraff, Kimberly A.; Umana-Taylor, Adriana J.

2012-01-01

Understanding the prevalence and correlates of decisional autonomy within specific cultural contexts is necessary to fully comprehend how family processes are embedded within culture. The goals of this study were to describe mothers' and fathers' decision-making with adolescents (M = 12.51 years, SD = 0.58; 51% female), including…

Important medical decisions: Using brief motivational interviewing to enhance patients' autonomous decision-making.

PubMed

Pantalon, Michael V; Sledge, William H; Bauer, Stephen F; Brodsky, Beth; Giannandrea, Stephanie; Kay, Jerald; Lazar, Susan G; Mellman, Lisa A; Offenkrantz, William C; Oldham, John; Plakun, Eric M; Rockland, Lawrence H

2013-03-01

The use of motivational interviewing (MI) when the goals of patient and physician are not aligned is examined. A clinical example is presented of a patient who, partly due to anxiety and fear, wants to opt out of further evaluation of his hematuria while the physician believes that the patient must follow up on the finding of hematuria. As patients struggle in making decisions about their medical care, physician interactions can become strained and medical care may become compromised. Physicians sometimes rely on their authority within the doctor-patient relationship to assist patients in making decisions. These methods may be ineffective when there is a conflict in motivations or goals, such as with patient ambivalence and resistance. Furthermore, the values of patient autonomy may conflict with the values of beneficence. A patient simulation exercise is used to demonstrate the value of MI in addressing the motivations of a medical patient when autonomy is difficult to realize because of a high level of resistance to change due to fear. The salience of MI in supporting the value of patient autonomy without giving up the value of beneficence is discussed by providing a method of evaluating the patient's best interests by psychotherapeutically addressing his anxious, fear-based ambivalence.

Examining chronic care patient preferences for involvement in health-care decision making: the case of Parkinson's disease patients in a patient-centred clinic.

PubMed

Zizzo, Natalie; Bell, Emily; Lafontaine, Anne-Louise; Racine, Eric

2017-08-01

Patient-centred care is a recommended model of care for Parkinson's disease (PD). It aims to provide care that is respectful and responsive to patient preferences, values and perspectives. Provision of patient-centred care should entail considering how patients want to be involved in their care. To understand the participation preferences of patients with PD from a patient-centred care clinic in health-care decision-making processes. Mixed-methods study with early-stage Parkinson's disease patients from a patient-centred care clinic. Study involved a modified Autonomy Preference Index survey (N=65) and qualitative, semi-structured in-depth interviews, analysed using thematic qualitative content analysis (N=20, purposefully selected from survey participants). Interviews examined (i) the patient preferences for involvement in health-care decision making; (ii) patient perspectives on the patient-physician relationship; and (iii) patient preferences for communication of information relevant to decision making. Preferences for participation in decision making varied between individuals and also within individuals depending on decision type, relational and contextual factors. Patients had high preferences for communication of information, but with acknowledged limits. The importance of communication in the patient-physician relationship was emphasized. Patient preferences for involvement in decision making are dynamic and support shared decision making. Relational autonomy corresponds to how patients envision their participation in decision making. Clinicians may need to assess patient preferences on an on-going basis. Our results highlight the complexities of decision-making processes. Improved understanding of individual preferences could enhance respect for persons and make for patient-centred care that is truly respectful of individual patients' wants, needs and values. © 2016 The Authors. Health Expectations Published by John Wiley & Sons Ltd.

Development of the Supported Decision Making Inventory System.

PubMed

Shogren, Karrie A; Wehmeyer, Michael L; Uyanik, Hatice; Heidrich, Megan

2017-12-01

Supported decision making has received increased attention as an alternative to guardianship and a means to enable people with intellectual and developmental disabilities to exercise their right to legal capacity. Assessments are needed that can used by people with disabilities and their systems of supports to identify and plan for needed supports to enable decision making. This article describes the steps taken to develop such an assessment tool, the Supported Decision Making Inventory System (SDMIS), and initial feedback received from self-advocates with intellectual disability. The three sections of the SDMIS (Supported Decision Making Personal Factors Inventory, Supported Decision Making Environmental Demands Inventory, and Decision Making Autonomy Inventory) are described and implications for future research, policy, and practice are discussed.

Factors Affecting Women's Autonomous Decision Making In Research Participation Amongst Yoruba Women Of Western Nigeria.

PubMed

Princewill, Chitu Womehoma; Jegede, Ayodele S; Nordström, Karin; Lanre-Abass, Bolatito; Elger, Bernice Simone

2017-04-01

Research is a global enterprise requiring participation of both genders for generalizable knowledge; advancement of science and evidence based medical treatment. Participation of women in research is necessary to reduce the current bias that most empirical evidence is obtained from studies with men to inform health care and related policy interventions. Various factors are assumed to limit autonomy amongst the Yoruba women of western Nigeria. This paper seeks to explore the experience and understanding of autonomy by the Yoruba women in relation to research participation. Focus is on factors that affect women's autonomous decision making in research participation. An exploratory qualitative approach comprising four focus group discussions, 42 in-depth interviews and 14 key informant interviews was used. The study permits a significant amount of triangulation, as opinions of husbands and religious leaders are also explored. Interviews and discussions were audiotaped and transcribed verbatim. Content analysis was employed for data analysis. Findings show that concepts of autonomy varied amongst the Yoruba women. Patriarchy, religion and culture are conceived to have negative impact on the autonomy of women in respect to research participation. Among the important findings are: 1) male dominance is strongly emphasized by religious leaders who should teach equality, 2) while men feel that by making decisions for women, they are protecting them, the women on the other hand see this protection as a way of limiting their autonomy. We recommend further studies to develop culturally appropriate and workable recruitment methods to increase women's participation in research. © 2016 John Wiley & Sons Ltd.

FACTORS AFFECTING WOMEN’S AUTONOMOUS DECISION MAKING IN RESEARCH PARTICIPATION AMONGST YORUBA WOMEN OF WESTERN NIGERIA

PubMed Central

PRINCEWILL, CHITU WOMEHOMA; JEGEDE, AYODELE S.; NORDSTRöM, KARIN; LANRE-ABASS, BOLATITO; ELGER, BERNICE SIMONE

2016-01-01

Research is a global enterprise requiring participation of both genders for generalizable knowledge; advancement of science and evidence based medical treatment. Participation of women in research is necessary to reduce the current bias that most empirical evidence is obtained from studies with men to inform health care and related policy interventions. Various factors are assumed to limit autonomy amongst the Yoruba women of western Nigeria. This paper seeks to explore the experience and understanding of autonomy by the Yoruba women in relation to research participation. Focus is on factors that affect women’s autonomous decision making in research participation. An exploratory qualitative approach comprising four focus group discussions, 42 in-depth interviews and 14 key informant interviews was used. The study permits a significant amount of triangulation, as opinions of husbands and religious leaders are also explored. Interviews and discussions were audiotaped and transcribed verbatim. Content analysis was employed for data analysis. Findings show that concepts of autonomy varied amongst the Yoruba women. Patriarchy, religion and culture are conceived to have negative impact on the autonomy of women in respect to research participation. Among the important findings are: 1) male dominance is strongly emphasized by religious leaders who should teach equality, 2) while men feel that by making decisions for women, they are protecting them, the women on the other hand see this protection as a way of limiting their autonomy. We recommend further studies to develop culturally appropriate and workable recruitment methods to increase women’s participation in research. PMID:26871880

Family and physician influence on asthma research participation decisions for adolescents: the effects of adolescent gender and research risk.

PubMed

Brody, Janet L; Scherer, David G; Annett, Robert D; Turner, Charles; Dalen, Jeanne

2006-08-01

There is considerable ethical and legal ambiguity surrounding the role of adolescents in the decision-making process for research participation. Depending on the nature of the study and the regulations involved, adolescents may have independent responsibility for providing informed consent, they may be asked to provide their assent, or they may be completely excluded from the decision-making process. This study examined parent and adolescent perceptions of decision-making authority and sources of influence on adolescent research participation decisions, and examined whether perceptions of influence differed based on adolescent gender and level of research risk. Adolescents (n = 36) with asthma and their parents reviewed 9 pediatric research protocols, decided whether they would choose to participate, rated the extent they would be responsible for the actual decision, and indicated the ability of family and physician to influence their decisions. Multivariate analyses of variance were used to evaluate differences in perceptions of decision-making authority and sources of influence on the decisions. Adolescents were less willing to cede decision making authority to parents than parents anticipated. Parents and adolescents acknowledged a greater openness to influence from physicians than from family for above minimal risk studies. Parents were more willing to consider opinions from male adolescents. Adolescents desire responsibility for research participation decisions, though parents may not share these views. Physicians' views on research participation are important to families, especially for above minimal risk studies. Parents may grant more decision-making autonomy to adolescent males than to females. Researchers, physicians, and institutions play a key role in facilitating the ethical enrollment of adolescents into biomedical research. Educational, policy, and oversight processes that support both adolescent autonomy and parental responsibility for research participation decision-making in biomedical research are discussed.

Respect for autonomy in the healthcare context: observations from a qualitative study of young adults with cerebral palsy.

PubMed

Racine, E; Larivière-Bastien, D; Bell, E; Majnemer, A; Shevell, M

2013-11-01

Respect for patient autonomy is a cornerstone of contemporary medical ethics and clinical practice. In its different shapes and forms (e.g. being informed, being engaged in discussions and decisions about medical care and being supported in developing healthcare preferences and choices), patient autonomy has been fostered by both paediatric and adult professional societies. The transition from paediatric to adult care creates a complex situation where autonomy for medical decisions shifts to the developing adolescent. More specific challenges to respect for autonomy may be experienced by young adults with cerebral palsy in the transition period where, for example, language and motor impairments may affect communication skills and this may be conflated with cognitive disability. To characterize perspectives towards autonomy in the healthcare context for young adults with cerebral palsy. We carried out semi-structured interviews with 14 young adults (aged 18-25) with cerebral palsy. The audiotaped interviews were transcribed verbatim and analysed using a conventional thematic qualitative content analysis. Participants displayed a range of attitudes towards autonomy, suggesting that the value of autonomy is considered in light of competing values and of context. Testimonials from participants demonstrated that both contextual (e.g. ill-adapted health care, lack of specialized public transport) and relational (e.g. attitudes towards parental involvement in decision making) factors negatively or positively impact autonomy. We observed that there were four key elements interwoven in participants' characterization of autonomy: the coupling of decisional and physical autonomy, the influences of family and society on autonomy, the influence of healthcare professionals on autonomy and the need for preparation for autonomy. © 2012 John Wiley & Sons Ltd.

Defining the doula's role: fostering relational autonomy.

PubMed

Meadow, Sandra L

2015-12-01

Training organizations as well as academic and popular literature provide ambiguous or ethically contentious characterizations of the role of the birth doula, a non-clinical role assisting women in pregnancy and birth with information and physical and emotional support. Doulas have been criticized for attempting to impose their own agendas on their clients and for interfering with the relationship between women and their medical caregivers. To develop a theoretically grounded model of the birth doula's role to guide constructive practice and refute some training organizations' and doulas' adoption of an active 'advocacy' role with clients that can lead to inappropriate practices. Apply the theoretical framework of relational autonomy to the components of the work that doulas perform with their clients. The conceptual framework of relational autonomy recognizes the social context in which women make choices about their care in pregnancy and birth, instead of assuming that autonomy is exercised in isolation. To support this understanding of autonomy, a relational model emphasizes women's skills development, self-confidence and recognition of the social context for decisions. Highlighting these aspects of exercising autonomy reduces the potential for the doula to seek to influence her client. The doula's role is reframed as one of facilitating patient engagement and shared decision-making. © 2014 John Wiley & Sons Ltd.

The impact of choice on retributive reactions: how observers' autonomy concerns shape responses to criminal offenders.

PubMed

van Prooijen, Jan-Willem; Kerpershoek, Emiel F P

2013-06-01

The present research examined the psychological origins of retributive reactions, which are defined as independent observers' anger-based emotions, demonized perceptions, and punishment intentions in response to criminal offenders. Based on the idea that society's justice system has an autonomy-protective function, we reason that chronic autonomy interacts with situational autonomy cues (i.e., opportunities to make choices) to predict retributive reactions to criminal offenders. More specifically, we hypothesized that choice opportunities in an unrelated decision-making context would prompt people to display stronger retributive reactions to offenders than no-choice opportunities, and that these effects of choice would be particularly pronounced among people who chronically experience deprivation of autonomy needs. Results from two experiments supported this hypothesis. It is concluded that retributive reactions to criminal offenders originate from a desire to regulate basic autonomy needs. © 2011 The British Psychological Society.

Existential autonomy: why patients should make their own choices.

PubMed

Madder, H

1997-08-01

Savulescu has recently introduced the "rational non-interventional paternalist" model of the patient-doctor relationship. This paper addresses objections to such a model from the perspective of an anaesthetist. Patients need to make their own decisions if they are to be fully autonomous. Rational non-interventional paternalism undermines the importance of patient choice and so threatens autonomy. Doctors should provide an evaluative judgment of the best medical course of action, but ought to restrict themselves to helping patients to make their own choices rather than making such choices for them.

Existential autonomy: why patients should make their own choices.

PubMed Central

Madder, H

1997-01-01

Savulescu has recently introduced the "rational non-interventional paternalist" model of the patient-doctor relationship. This paper addresses objections to such a model from the perspective of an anaesthetist. Patients need to make their own decisions if they are to be fully autonomous. Rational non-interventional paternalism undermines the importance of patient choice and so threatens autonomy. Doctors should provide an evaluative judgment of the best medical course of action, but ought to restrict themselves to helping patients to make their own choices rather than making such choices for them. PMID:9279743

Ethics consultation and autonomy.

PubMed

Varelius, Jukka

2008-03-01

Services of ethics consultants are nowadays commonly used in such various spheres of life as engineering, public administration, business, law, health care, journalism, and scientific research. It has however been maintained that use of ethics consultants is incompatible with personal autonomy; in moral matters individuals should be allowed to make their own decisions. The problem this criticism refers to can be conceived of as a conflict between the professional autonomy of ethics experts and the autonomy of the persons they serve. This paper addresses this conflict and maintains that when the nature of both ethics consultation and individual autonomy is properly understood, the professional autonomy of ethics experts is compatible with the autonomy of the persons they assist.

Health care decisionmaking by children. Is it in their best interest?

PubMed

Ross, L F

1997-01-01

The argument for children's rights in health care has been long in the making. The success of this position is reflected in the 1995 American Academy of Pediatrics recommendations for the role of children in health care decisionmaking, which suggest that children be given greater voice as they mature. But there are good moral and practical reasons for exercising caution in these health care situations, especially when the child and parents disagree. Parents need the moral and legal space within which to make decisions that will facilitate their child's long-term autonomy, not only her present-day autonomy. Moreover, third-party intrusion, by physicians or the state, should be resisted unless negligent and abusive decisions are in the making.

Deciding for imperilled newborns: medical authority or parental autonomy?

PubMed Central

McHaffie, H.; Laing, I.; Parker, M.; McMillan, J.

2001-01-01

The ethical issues around decision making on behalf of infants have been illuminated by two empirical research studies carried out in Scotland. In-depth interviews with 176 medical and nursing staff and with 108 parents of babies for whom there was discussion of treatment withholding/withdrawal, generated a wealth of data on both the decision making process and the management of cases. Both staff and parents believe that parents should be involved in treatment limitation decisions on behalf of their babies. However, whilst many doctors and nurses consider the ultimate responsibility too great for families to carry, the majority of parents wish to be the final arbiters. We offer explanations for the differences in perception found in the two groups. The results of these empirical studies provide both aids to ethical reflection and guidance for clinicians dealing with these vulnerable families. They demonstrate the value of empirical data in the philosophical debate. Key Words: Empirical ethics • treatment limitation • parental autonomy • decision making PMID:11314152

Invited Article: Threats to physician autonomy in a performance-based reimbursement system.

PubMed

Larriviere, Daniel G; Bernat, James L

2008-06-10

Physician autonomy is currently threatened by the external application of pay for performance standards and required conformity to practice guidelines. This phenomenon is being driven by concerns over the economic viability of increasing per capita health care expenditures without a concomitant rise in favorable health outcomes and by the unjustified marked variations among physicians' practice patterns. Proponents contend that altering the reimbursement system to encourage physicians to make choices based upon the best available evidence would be one way to ensure better outcomes per health care dollar spent. Although physician autonomy is most easily justified when decisions are made by appealing to the best available evidence, incentivizing decision-making risks sacrificing physician autonomy to political and social forces if the limitations of evidence-based medicine are not respected. Any reimbursement system designed to encourage physicians to utilize the best available evidence by providing financial incentives must recognize physicians who try to play to the numbers as well as physicians who refuse to follow the best available evidence if doing so would conflict with good medicine or patient preferences. By designing, promulgating, and updating evidence-based clinical practice guidelines, medical specialty societies can limit threats to physician autonomy while improving medical practice.

Dying cancer patients' own opinions on euthanasia: an expression of autonomy? A qualitative study.

PubMed

Karlsson, Marit; Milberg, Anna; Strang, Peter

2012-01-01

Deliberations on euthanasia are mostly theoretical, and often lack first-hand perspectives of the affected persons. Sixty-six patients suffering from cancer in a palliative phase were interviewed about their perspectives of euthanasia in relation to autonomy. The interviews were transcribed verbatim and analysed using qualitative content analysis with no predetermined categories. The informants expressed different positions on euthanasia, ranging from support to opposition, but the majority were undecided due to the complexity of the problem. The informants' perspectives on euthanasia in relation to autonomy focused on decision making, being affected by (1) power and (2) trust. Legalization of euthanasia was perceived as either (a) increasing patient autonomy by patient empowerment, or (b) decreasing patient autonomy by increasing the medical power of the health care staff, which could be frightening. The informants experienced dependence on others, and expressed various levels of trust in others' intentions, ranging from full trust to complete mistrust. Dying cancer patients perceive that they cannot feel completely independent, which affects true autonomous decision making. Further, when considering legalization of euthanasia, the perspectives of patients fearing the effects of legalization should also be taken into account, not only those of patients opting for it.

A fuzzy logic control in adjustable autonomy of a multi-agent system for an automated elderly movement monitoring application.

PubMed

Mostafa, Salama A; Mustapha, Aida; Mohammed, Mazin Abed; Ahmad, Mohd Sharifuddin; Mahmoud, Moamin A

2018-04-01

Autonomous agents are being widely used in many systems, such as ambient assisted-living systems, to perform tasks on behalf of humans. However, these systems usually operate in complex environments that entail uncertain, highly dynamic, or irregular workload. In such environments, autonomous agents tend to make decisions that lead to undesirable outcomes. In this paper, we propose a fuzzy-logic-based adjustable autonomy (FLAA) model to manage the autonomy of multi-agent systems that are operating in complex environments. This model aims to facilitate the autonomy management of agents and help them make competent autonomous decisions. The FLAA model employs fuzzy logic to quantitatively measure and distribute autonomy among several agents based on their performance. We implement and test this model in the Automated Elderly Movements Monitoring (AEMM-Care) system, which uses agents to monitor the daily movement activities of elderly users and perform fall detection and prevention tasks in a complex environment. The test results show that the FLAA model improves the accuracy and performance of these agents in detecting and preventing falls. Copyright © 2018 Elsevier B.V. All rights reserved.

Factors Influencing Abortion Decision-Making Processes among Young Women

PubMed Central

Frederico, Mónica; Michielsen, Kristien; Decat, Peter

2018-01-01

Background: Decision-making about if and how to terminate a pregnancy is a dilemma for young women experiencing an unwanted pregnancy. Those women are subject to sociocultural and economic barriers that limit their autonomy and make them vulnerable to pressures that influence or force decisions about abortion. Objective: The objective of this study was to explore the individual, interpersonal and environmental factors behind the abortion decision-making process among young Mozambican women. Methods: A qualitative study was conducted in Maputo and Quelimane. Participants were identified during a cross-sectional survey with women in the reproductive age (15–49). In total, 14 women aged 15 to 24 who had had an abortion participated in in-depth interviews. A thematic analysis was used. Results: The study found determinants at different levels, including the low degree of autonomy for women, the limited availability of health facilities providing abortion services and a lack of patient-centeredness of health services. Conclusions: Based on the results of the study, the authors suggest strategies to increase knowledge of abortion rights and services and to improve the quality and accessibility of abortion services in Mozambique. PMID:29438335

Community Bioethics: The Health Decisions Community Council.

ERIC Educational Resources Information Center

Gallegos, Tom; Mrgudic, Kate

1993-01-01

Sees health care decision making posing variety of complex issues for individuals, families, and providers. Describes Health Decisions Community Council (HDCC), community-based bioethics committee established to offer noninstitutional forum for discussion of health care dilemmas. Notes that social work skills and values for autonomy and…

[Issues related to consent to healthcare decisions in children and adolescents].

PubMed

Bailly, D

2010-02-01

The process of consent to healthcare decisions in children and adolescents often set physicians difficult problems. From what age is a child able to understand the information given to him or her about illness and treatment? Is an ill child indeed in the capacity to give his or her voluntary consent to treatment? How to define and to assess the capacity of an ill child to take part in treatment decisions? More than the age of the child, it is his or her level of cognitive, emotional and social development and its interactions with illness that will determine his or her degree of involvement in the decision-making process. There is a moral and ethical need to respect the rights and autonomy of every individual, regardless of age. This does not mean viewing children and adolescents as rational and autonomous decision-makers. This implies that we must promote their developmentally appropriate participation in shared decision-making with parents and physicians. Therefore, instead of asking, "should children and adolescents be granted absolute autonomy in decision making?" we ought to ask, "should we treat children and adolescents like people?" Copyright (c) 2010 Elsevier Masson SAS. All rights reserved.

Comprehending care in a medical home: a usual source of care and patient perceptions about healthcare communication.

PubMed

DeVoe, Jennifer E; Wallace, Lorraine S; Pandhi, Nancy; Solotaroff, Rachel; Fryer, George E

2008-01-01

To examine whether having a usual source of care (USC) is associated with positive patient perceptions of health care communication and to identify demographic factors among patients with a USC that are independently associated with differing reports of how patients perceive their involvement in health care decision making. Cross-sectional analyses of nationally representative data from the 2002 Medical Expenditure Panel Survey. Among adults with a health care visit in the past year (n = approximately 16,700), we measured independent associations between having a USC and patient perceptions of health care communication. Second, among respondents with a USC (n = approximately 18,000), we assessed the independent association between various demographic factors and indicators of patients' perceptions of their autonomy in making health care decisions. Approximately 78% of adults in the United States reported having a USC. Those with a USC were more likely to report that providers always listened to them, always explained things clearly, always showed respect, and always spent enough time with them. Patients who perceived higher levels of decision-making autonomy were non-Hispanic, had health insurance coverage, lived in rural areas, and had higher incomes. Patients with a USC were more likely to perceive positive health care interactions. Certain demographic factors among the subgroups of Medical Expenditure Panel Survey respondents with a USC were associated with patient perceptions of greater decision-making autonomy. Efforts to ensure universal access to a USC must be partnered with broader awareness and training of USC providers to engage patients from various demographic backgrounds equally when making health care decisions at the point of care.

Cultivating Conformists or Raising Rebels? Connecting Parental Control and Autonomy Support to Adolescent Delinquency.

PubMed

Brauer, Jonathan R

2017-06-01

This study investigates short-term and long-term associations between parenting in early adolescence and delinquency throughout adolescence using data from the National Longitudinal Surveys. Multilevel longitudinal Poisson regressions show that behavioral control, psychological control, and decision-making autonomy in early adolescence (ages 10-11) are associated with delinquency trajectories throughout adolescence (ages 10-17). Path analyses reveal support for three mediation hypotheses. Parental monitoring (behavioral control) is negatively associated with delinquency in the short term and operates partly through changes in self-control. Parental pressure (psychological control) shows immediate and long-lasting associations with delinquency through changes in self-control and delinquent peer pressures. Decision-making autonomy is negatively associated with delinquency in the long term, yet may exacerbate delinquency in early adolescence by increasing exposure to delinquent peers. © 2016 The Author. Journal of Research on Adolescence © 2016 Society for Research on Adolescence.

Decision-making and motivation to participate in biomedical research in southwest Nigeria.

PubMed

Osamor, Pauline E; Kass, Nancy

2012-08-01

Motivations and decision-making styles that influence participation in biomedical research vary across study types, cultures, and countries. While there is a small amount of literature on informed consent in non-western cultures, few studies have examined how participants make the decision to join research. This study was designed to identify the factors motivating people to participate in biomedical research in a traditional Nigerian community, assess the degree to which participants involve others in the decision-making process, and examine issues of autonomy in decision-making for research. A descriptive cross-sectional study was conducted with 100 adults (50 men, 50 women) in an urban Nigerian community who had participated in a biomedical research study. Subjects were interviewed using a survey instrument. Two-thirds of the respondents reported participating in the biomedical study to learn more about their illness, while 30% hoped to get some medical care. Over three-quarters (78%) of participants discussed the enrollment decision with someone else and 39% reported obtaining permission from a spouse or family member to participate in the study. Women were more than twice as likely as men to report obtaining permission from someone else before participating. More specifically, half of the female participants reported seeking permission from a spouse before enrolling. The findings suggest that informed consent in this community is understood and practised as a relational activity that involves others in the decision making process. Further studies are needed in non-Western countries concerning autonomy, decision-making, and motivation to participate in research studies. © 2012 Blackwell Publishing Ltd.

Sharing intelligence: Decision-making interactions between users and software in MAESTRO

NASA Technical Reports Server (NTRS)

Geoffroy, Amy L.; Gohring, John R.; Britt, Daniel L.

1991-01-01

By combining the best of automated and human decision-making in scheduling many advantages can accrue. The joint performance of the user and system is potentially much better than either alone. Features of the MAESTRO scheduling system serve to illustrate concepts of user/software cooperation. MAESTRO may be operated at a user-determinable and dynamic level of autonomy. Because the system allows so much flexibility in the allocation of decision-making responsibilities, and provides users with a wealth of information and other support for their own decision-making, better overall schedules may result.

75 FR 5567 - Certain Woven Electric Blankets From the People's Republic of China: Preliminary Determination of...

Federal Register 2010, 2011, 2012, 2013, 2014

2010-02-03

... agreements; (3) whether the respondent has autonomy from the government in making decisions regarding the... authority to negotiate and sign contracts and other agreements; and (4) have autonomy from the government... valued the FOPs using prices and financial statements from the surrogate country, India. If market...

76 FR 41207 - Tapered Roller Bearings and Parts Thereof, Finished or Unfinished, From the People's Republic of...

Federal Register 2010, 2011, 2012, 2013, 2014

2011-07-13

...) whether the respondent has autonomy from the government in making decisions regarding the selection of... respondent has autonomy from the government regarding the selection of management.\\28\\ \\28\\ See Sihe's SRA... published in the International Monetary Fund's International Financial Statistics.\\38\\ \\37\\ See Surrogate...

Professionalism in 21st century professional practice: autonomy and accountability in orthopaedic surgery.

PubMed

Schneller, Eugene S; Wilson, Natalia A

2009-10-01

Orthopaedic surgical practice is becoming increasingly complex. The rapid change in pace associated with new information and technologies, the physician-supplier relationship, the growing costs and growing gap between costs and reimbursements for orthopaedic surgical procedures, and the influences of advertising on the patient, challenge all involved in the delivery of orthopaedic care. This paper assesses the concepts of professionalism, autonomy, and accountability in the 21st century practice of orthopaedic surgery. These concepts are considered within the context of the complex value chain surrounding orthopaedic surgery and the changing forces influencing clinical decision making by the surgeon. A leading impetus for challenge to the autonomy of the orthopaedic surgeon has been cost. Mistrust and lack of understanding have characterized the physician-hospital relationship. Resource dependency has characterized the physician-supplier relationship. Accountability for the surgeon has increased. We suggest implant surgery involves shared decision making and "coproduction" between the orthopaedic surgeon and other stakeholders. The challenge for the profession is to redefine professionalism, accountability, and autonomy in the face of these changes and challenges.

Shared decision making: relevant concepts and facilitating strategies.

PubMed

Bae, Jong-Myon

2017-01-01

As the paradigm in healthcare nowadays is the evidence-based, patient-centered decision making, the issue of shared decision making (SDM) is highlighted. The aims of this manuscript were to look at the relevant concepts and suggest the facilitating strategies for overcoming barriers of conducting SDM. While the definitions of SDM were discordant, several concepts such as good communication, individual autonomy, patient participants, and patient-centered decision-making were involved. Further, the facilitating strategies of SDM were to educate and train physician, to apply clinical practice guidelines and patient decision aids, to develop valid measurement tools for evaluation of SDM processes, and to investigate the impact of SDM.

How Does a Shared Decision-Making (SDM) Intervention for Oncologists Affect Participation Style and Preference Matching in Patients with Breast and Colon Cancer?

PubMed

Bieber, Christiane; Nicolai, Jennifer; Gschwendtner, Kathrin; Müller, Nicole; Reuter, Katrin; Buchholz, Angela; Kallinowski, Birgit; Härter, Martin; Eich, Wolfgang

2018-06-01

The aims of this study are to assess patients' preferred and perceived decision-making roles and preference matching in a sample of German breast and colon cancer patients and to investigate how a shared decision-making (SDM) intervention for oncologists influences patients' preferred and perceived decision-making roles and the attainment of preference matches. This study is a post hoc analysis of a randomised controlled trial (RCT) on the effects of an SDM intervention. The SDM intervention was a 12-h SDM training program for physicians in combination with decision board use. For this study, we analysed a subgroup of 107 breast and colon cancer patients faced with serious treatment decisions who provided data on specific questionnaires with regard to their preferred and perceived decision-making roles (passive, SDM or active). Patients filled in questionnaires immediately following a decision-relevant consultation (t1) with their oncologist. Eleven of these patients' 27 treating oncologists had received the SDM intervention within the RCT. A majority of cancer patients (60%) preferred SDM. A match between preferred and perceived decision-making roles was reached for 72% of patients. The patients treated by SDM-trained physicians perceived greater autonomy in their decision making (p < 0.05) with more patients perceiving SDM or an active role, but their preference matching was not influenced. A SDM intervention for oncologists boosted patient autonomy but did not improve preference matching. This highlights the already well-known reluctance of physicians to engage in explicit role clarification. German Clinical Trials Register DRKS00000539; Funding Source: German Cancer Aid.

The impact of financial constraints and incentives on professional autonomy.

PubMed

Lewis, Jenny M; Marjoribanks, Tim

2003-01-01

General practice has been the subject of extensive reforms over the 1990s in Australia as elsewhere. Reforms have attempted to improve quality and contain the overall cost of health care, and have often been seen as reducing the autonomy of medical professionals. This paper examines the impact of financial constraints and incentives introduced during the 1990s on Australian GPs' perceptions of autonomy. An existing seven component definition of autonomy and six themes that emerged from reviewing publications were used to construct focus group questions. A total of 25 GPs participated in four focus groups. Those who participated believe that their financial autonomy has been diminished by policy changes and consumer expectations. They also perceive that their ability to control clinical decisions, which they regard as the most important aspect of professional autonomy, has been reduced along with financial autonomy. Organized medicine in Australia sees financial accountability and clinical decision making as polar opposites, and has continued to argue that fee-for-service payment is the only appropriate method of remuneration, despite increasing evidence that this does not guarantee clinical autonomy. Major changes to the financing of general practice in Australia are required to address the concerns of GPs, governments and patients.

Beyond the Bureaucratic Model: A Study of Power and Autonomy in Educational Decision-Making

ERIC Educational Resources Information Center

Hanson, Mark

1976-01-01

This paper argues that there are at least two decision-making systems in the school: (1) the first reflects mainly school-wide affairs and lends itself to rational, centrally controlled procedures that restrict behaviors to conform with well-programmed events; and (2) the second reflects mainly classroom affairs and requires flexibility and…

Shared Decision Making for Clients with Mental Illness: A Randomized Factorial Survey

ERIC Educational Resources Information Center

Lukens, Jonathan M.; Solomon, Phyllis; Sorenson, Susan B.

2013-01-01

Objective: The goal of this study was to test the degree to which client clinical characteristics and environmental context and social workers' practice values and experience influenced support for client's autonomy and willingness to engage in shared decision making (SDM), and whether willingness to engage in SDM was mediated by support for…

Women's participation in household decision-making and higher dietary diversity: findings from nationally representative data from Ghana.

PubMed

Amugsi, Dickson A; Lartey, Anna; Kimani, Elizabeth; Mberu, Blessing U

2016-05-31

Low-quality monotonous diet is a major problem confronting resource-constrained settings across the world. Starchy staple foods dominate the diets in these settings. This places the population, especially women of reproductive age, at a risk of micronutrients deficiencies. This study seeks to examine the association between women's decision-making autonomy and women's achievement of higher dietary diversity (DD) and determine the socio-demographic factors that can independently predict women's attainment of higher DD. The study used data from the 2008 Ghana Demographic and Health Survey. The participants comprised of 2262 women aged 15-49 years and who have complete dietary data. The DD score was derived from a 24-h recall of intake of foods from nine groups. The score was dichotomized into lower DD (DD ≤4) and higher (DD ≥5). Logistic regression was used to assess the association between women decision-making autonomy (final say on how to spend money, making household purchases, own health care, opinions on wife-beating, and sexual intercourse with husband) and the achievement of higher DD. The logistic regression models were adjusted for covariates at the individual and household levels. The analysis showed that women participation in decision-making regarding household purchases was significantly associated with higher DD, after adjusting for individual and household level covariates. The odds of achieving higher DD were higher among women who had a say in deciding household purchases, compared to women who did not have a say (OR = 1.74, 95 % CI = 1.24, 2.42). Women who had more than primary education were 1.6 times more likely to achieve higher DD, compared to those with no education (95 % CI = 1.12, 2.20). Compared to women who lived in polygamous households, those who lived in monogamous households had higher odds of achieving higher DD (OR = 1.42, 95 % CI = 1.04, 1.93). Net other covariates, women who have a say in making household purchases are more likely to achieve higher DD compare to those who do not have a say. This may indicate autonomy to buy nutritious foods, suggesting that improving women decision-making autonomy could have a positive impact on women dietary intake.

Robot Science Autonomy in the Atacama Desert and Beyond

NASA Technical Reports Server (NTRS)

Thompson, David R.; Wettergreen, David S.

2013-01-01

Science-guided autonomy augments rovers with reasoning to make observations and take actions related to the objectives of scientific exploration. When rovers can directly interpret instrument measurements then scientific goals can inform and adapt ongoing navigation decisions. These autonomous explorers will make better scientific observations and collect massive, accurate datasets. In current astrobiology studies in the Atacama Desert we are applying algorithms for science autonomy to choose effective observations and measurements. Rovers are able to decide when and where to take follow-up actions that deepen scientific understanding. These techniques apply to planetary rovers, which we can illustrate with algorithms now used by Mars rovers and by discussing future missions.

Value-Based Reimbursement: Impact of Curtailing Physician Autonomy in Medical Decision Making.

PubMed

Gupta, Dipti; Karst, Ingolf; Mendelson, Ellen B

2016-02-01

In this article, we define value in the context of reimbursement and explore the effect of shifting reimbursement paradigms on the decision-making autonomy of a women's imaging radiologist. The current metrics used for value-based reimbursement such as report turnaround time are surrogate measures that do not measure value directly. The true measure of a physician's value in medicine is accomplishment of better health outcomes, which, in breast imaging, are best achieved with a physician-patient relationship. Complying with evidence-based medicine, which includes data-driven best clinical practices, a physician's clinical expertise, and the patient's values, will improve our science and preserve the art of medicine.

Cross-cultural perspectives on decision making regarding noninvasive prenatal testing: A comparative study of Lebanon and Quebec.

PubMed

Haidar, Hazar; Vanstone, Meredith; Laberge, Anne-Marie; Bibeau, Gilles; Ghulmiyyah, Labib; Ravitsky, Vardit

2018-01-01

Noninvasive prenatal testing (NIPT), based on the detection of cell-free fetal DNA in maternal blood, has transformed the landscape of prenatal care by offering clinical benefits (noninvasive, high specificity and sensitivity, early detection of abnormalities) compared to existing prenatal screening tests. NIPT has expanded rapidly and is currently commercially available in most of the world. As NIPT spreads globally, culturally sensitive and ethically sound implementation will require policies that take into consideration the social and cultural context of prenatal testing decisions. In a Western context, the main ethical argument for providing access and public funding of prenatal tests is the promotion of reproductive autonomy (also referred to as "procreative liberty" and "reproductive freedom"), by enabling pregnant women and couples to access information about the fetus in order to choose a certain course of action for pregnancy management (continuation of pregnancy and preparation for birth or termination). So how is the framework of reproductive autonomy operationalized in non-Western cultural contexts? We used Quebec, Canada, and Beirut, Lebanon, for case studies to explore what ethical considerations related to reproductive autonomy should guide the implementation of the test in various cultural contexts. To answer this question, we conducted a qualitative study to (1) explore the perceptions, values, and preferences of pregnant women and their partners about NIPT and (2) examine how these values and perceptions influence reproductive autonomy and decision making in relation to NIPT in these two different cultural settings, Lebanon and Quebec. Our findings may guide health care professionals in providing counseling and in helping women and their partners make better informed prenatal testing decisions. Further, at a policy level, such understanding might inform the development of local guidelines and policies that are appropriate to each context.

Adoption of clinical decision support systems in a developing country: Antecedents and outcomes of physician's threat to perceived professional autonomy.

PubMed

Esmaeilzadeh, Pouyan; Sambasivan, Murali; Kumar, Naresh; Nezakati, Hossein

2015-08-01

The basic objective of this research is to study the antecedents and outcomes of professional autonomy which is a central construct that affects physicians' intention to adopt clinical decision support systems (CDSS). The antecedents are physicians' attitude toward knowledge sharing and interactivity perception (about CDSS) and the outcomes are performance expectancy and intention to adopt CDSS. Besides, we include (1) the antecedents of attitude toward knowledge sharing-subjective norms, social factors and OCB (helping behavior) and (2) roles of physicians' involvement in decision making, computer self-efficacy and effort expectancy in our framework. Data from a stratified sample of 335 Malaysian physicians working in 12 public and private hospitals in Malaysia were collected to test the hypotheses using Structural Equation Modeling (SEM). The important findings of our research are: (1) factors such as perceived threat to professional autonomy, performance expectancy, and physicians' involvement in making decision about CDSS have significant impact on physicians' intention to adopt CDSS; (2) physicians' attitude toward knowledge sharing, interactivity perception and computer self-efficacy of physicians play a crucial role in influencing their perceived threat to professional autonomy; and (3) social network, shared goals and OCB (helping behavior) impact physicians' attitude toward knowledge sharing. The findings provide a comprehensive understanding of the factors that influence physicians' intention to adopt CDSS in a developing country. The results can help hospital managers manage CDSS implementation in an effective manner. Copyright © 2015 Elsevier Ireland Ltd. All rights reserved.

Married women's autonomy and post-delivery modern contraceptive use in the Democratic Republic of Congo.

PubMed

Sano, Yuji; Antabe, Roger; Atuoye, Kilian Nasung; Braimah, Joseph A; Galaa, Sylvester Z; Luginaah, Isaac

2018-03-12

Although use of modern contraception is considered beneficial in lowering maternal and child mortality rates, the prevalence of contraceptive use remains low in the Democratic Republic of Congo. This study examined modern contraceptive use and its linkage to women's autonomy. Data were drawn from the 2013-2014 Democratic Republic of Congo Demographic and Health Survey. We selected unsterilized and non-pregnant married women who have given birth in the last three years (N = 6680). Logistic regression models were fitted to explore the relationship between women's autonomy and modern contraceptive use. The study found that only 7.1% of married women who had delivered within three years used modern contraceptive methods. After controlling for socioeconomic and demographic factors, the association between women's autonomy and modern contraceptive use remained positively significant (OR = 1.16; 95% CI = 1.05, 1.29). The findings from this study indicate that it is not enough to provide women with educational and employment opportunities to increase the uptake of modern contraception, but also to enhance women's assertiveness to make their own decisions regardless of their partners' preferences within household settings. It is critical for government and other stakeholders to roll out programs aimed at reducing gender inequality and improving women's autonomy in decision-making about reproductive health.

Autonomy and School Improvement: What Do We Know and Where Do We Go from Here?

ERIC Educational Resources Information Center

Honig, Meredith I.; Rainey, Lydia R.

2012-01-01

New "autonomy initiatives" aim to increase schools' decision-making authority as a strategy to leverage school improvement. These policies build on lessons of previous reforms such as site-based management in ways that bode well for their success. However, how are these policies actually faring in implementation? The authors addressed that…

A Phenomenological Study of Autonomous Management Performance Schools (AMPS) in the Chicago Public Schools

ERIC Educational Resources Information Center

Moore, Forrest W.

2009-01-01

The primary objective of this qualitative study is to explore the impact of autonomy on the relationship between schools and districts of the school level across governance, operations, curriculum and instruction and the decision making that accompanies the each of these factors. More specifically, this study focuses the impact of autonomy within…

Impact of School Autonomy on Student Achievement: Cases from Australia

ERIC Educational Resources Information Center

Caldwell, Brian John

2016-01-01

Purpose: The purpose of this paper is to report four case studies in Australia that respond to the question: "How have schools with a relatively high degree of autonomy used their increased authority and responsibility to make decisions that have led in explicit cause-and-effect fashion to higher levels of student achievement"?…

Decision-making and outcomes of hearing help-seekers: A self-determination theory perspective.

PubMed

Ridgway, Jason; Hickson, Louise; Lind, Christopher

2016-07-01

To explore the explanatory power of a self-determination theory (SDT) model of health behaviour change for hearing aid adoption decisions and fitting outcomes. A quantitative approach was taken for this longitudinal cohort study. Participants completed questionnaires adapted from SDT that measured autonomous motivation, autonomy support, and perceived competence for hearing aids. Hearing aid fitting outcomes were obtained with the international outcomes inventory for hearing aids (IOI-HA). Sociodemographic and audiometric information was collected. Participants were 216 adult first-time hearing help-seekers (125 hearing aid adopters, 91 non-adopters). Regression models assessed the impact of autonomous motivation and autonomy support on hearing aid adoption and hearing aid fitting outcomes. Sociodemographic and audiometric factors were also taken into account. Autonomous motivation, but not autonomy support, was associated with increased hearing aid adoption. Autonomy support was associated with increased perceived competence for hearing aids, reduced activity limitation and increased hearing aid satisfaction. Autonomous motivation was positively associated with hearing aid satisfaction. The SDT model is potentially useful in understanding how hearing aid adoption decisions are made, and how hearing health behaviour is internalized and maintained over time. Autonomy supportive practitioners may improve outcomes by helping hearing aid adopters maintain internalized change.

Decision making in midwifery: rationality and intuition.

PubMed

Steinhauer, Suyai

2015-04-01

Decision making in midwifery is a complex process that shapes and underpins clinical practice and determines, to a large extent, the quality of care. Effective decision making and professional accountability are central to clinical governance, and being able.to justify all decisions is a professional and legal requirement. At the same time, there is an emphasis in midwifery on shared decision making, and keeping women at the centre of their care, and research reveals that feelings of choice, control and autonomy are central to a positive birth experience. However the extent to which decisions are really shared and care truly woman-centred is debatable and affected by environment and culture. Using a case study of a decision made in clinical practice around amniotomy, this article explores the role of the intuitive thinking system in midwifery decision making, and highlights the importance of involving women in the decision making process.

Medical futility in children's nursing: making end-of-life decisions.

PubMed

Brien, Irene O; Duffy, Anita; Shea, Ellen O

Caring for infants at end of life is challenging and distressing for parents and healthcare professionals, especially in relation to making decisions regarding withholding or withdrawal of treatment. The concept of medical futility must be considered under these circumstances. Parents and healthcare professionals should be involved together in making these difficult decisions. However, for some parents, emotions and guilt often are unbearable and, understandably, parents can be reluctant to make a decision. Despite the recognition of parental autonomy, if parents disagree with a decision made by medical staff, the case will be referred to and solved by the courts. The courts' decisions are often based on the best interest of the child. In this article, the authors discuss the concepts of 'parental autonomy' and 'the child's best interests' when determining medical futility for infants or neonates. The role of the nurse when caring for the dying child and their family is multifaceted. While nurses do not have a legitimate role in decision making at the end of life, it is often nurses who, through their advocacy role, inform doctors about parents' wishes and it is often nurses who support parents during this difficult time. Furthermore, nurses caring for dying children should be familiar to the family, experienced in end-of-life care and comfortable talking to parents about death and dying and treatment choices. Children's nurses therefore require advanced communication skills and an essential understanding of the ethical and legal knowledge relating to medical futility in end-of-life children's nursing.

Concept Analysis of Maternal Autonomy in the Context of Breastfeeding.

PubMed

Hirani, Shela Akbar Ali; Olson, Joanne

2016-05-01

The purpose of this article is to analyze the concept of maternal autonomy in the context of breastfeeding and propose a clearer definition of the concept. A concept analysis was undertaken using Walker and Avant's eight-stage approach. The concept analysis suggests that maternal autonomy in the context of breastfeeding refers to a mother's ability to make autonomous decisions using her control, agency, independence, and ethical reasoning. The antecedents are maternal competence, availability of support, nature of the setting, and available alternatives with respect to breastfeeding. The consequences are improvement in child health, maternal-child bonding, breastfeeding decisions, and maternal healthcare-seeking behavior. A clearer understanding of maternal autonomy in the context of breastfeeding will guide the development of a conceptual framework and expand nursing knowledge development. A clearer definition of the concept of maternal autonomy in the context of breastfeeding will guide clinicians, researchers, and policy makers in protecting, promoting, and supporting breastfeeding globally towards achieving the United Nations Sustainable Development Goals, 2015-2030. © 2016 Sigma Theta Tau International.

Methods for Determining the Level of Autonomy to Design into a Human Spaceflight Vehicle: A Function Specific Approach

NASA Technical Reports Server (NTRS)

Proud, Ryan W.; Hart, Jeremy J.; Mrozinski, Richard B.

2003-01-01

The next-generation human spaceflight vehicle is in a unique position to realize the benefits of more than thirty years of technological advancements since the Space Shuttle was designed. Computer enhancements, the emergence of highly reliable decision-making algorithms, and an emphasis on efficiency make an increased use of autonomous systems highly likely. NASA is in a position to take advantage of these advances and apply them to the human spaceflight environment. One of the key paradigm shifts will be the shift, where appropriate, of monitoring, option development, decision-making, and execution responsibility from humans to an Autonomous Flight Management (AFM) system. As an effort to reduce risk for development of an AFM system, NASA engineers are developing a prototype to prove the utility of previously untested autonomy concepts. This prototype, called SMART (Spacecraft Mission Assessment and Replanning Tool), is a functionally decomposed flight management system with an appropriate level of autonomy for each of its functions. As the development of SMART began, the most important and most often asked question was, How autonomous should an AFM system be? A thorough study of the literature through 2002 surrounding autonomous systems has not yielded a standard method for designing a level of autonomy into either a crewed vehicle or an uncrewed vehicle. The current focus in the literature on defining autonomy is centered on developing IQ tests for built systems. The literature that was analyzed assumes that the goal of all systems is to strive for complete autonomy from human intervention, rather than identifying how autonomous each function within the system should have been. In contrast, the SMART team developed a method for determining the appropriate level of autonomy to be designed into each function within a system. This paper summarizes the development of the Level of Autonomy Assessment Tool and its application to the SMART project.

Is patient autonomy a critical determinant of quality of life in Korea? End-of-life decision making from the perspective of the patient.

PubMed

Mo, Ha Na; Shin, Dong Wook; Woo, Jae Ha; Choi, Jin Young; Kang, Jina; Baik, Young Ji; Huh, Yu Rae; Won, Joo Hee; Park, Myung Hee; Cho, Sang Hee

2012-04-01

We aimed to investigate the current practice of the involvement in decision making from the perspectives of terminal cancer patients, and to explore its possible associations with quality of life and quality of death in Korea. A multi-center, cross-sectional survey was performed on 93 terminal cancer patients. The questionnaire solicited their opinions regarding participation in treatment decision making, as well as quality of life (European Organization for Research and Treatment of Cancer Quality-of-Life Questionnaire for Palliative Care) and quality of death (Good Death Inventory-Patient Version). A total of 78.5% of the patients had awareness of their terminal status, while 21.5% did not; 42.4% stated that they knew their condition and shared the decision-making responsibility with the medical staff and their family, while 21.7% made decisions on their own, and 35.9% left the decision-making responsibility to others. Patients who were aware of their illness and who actively participated in the decision making did not score higher than others on outcome measures of quality of life and quality of death. Moreover, the former even showed lower scores in some domains, including the 'physical and psychological comfort' (4.99 versus 5.61, p = 0.03), 'environmental comfort' (5.51 versus 6.04, p = 0.08), and 'emotional functioning' (55.70 versus 71.01, p = 0.06). in Korea, patient autonomy is not a universally accepted value from the perspectives of terminal cancer patients, nor is patient involvement in decision making always conducive to high quality of life or quality of death. The level of information and the pace at which it is provided should be tailored to each individual's ability, preference, need, and culture.

Religious Belonging, Religious Agency, and Women’s Autonomy in Mozambique

PubMed Central

Agadjanian, Victor; Yabiku, Scott T.

2016-01-01

Women’s autonomy has frequently been linked with women’s opportunities and investments, such as education, employment, and reproductive control. The association between women’s autonomy and religion in the developing world, however, has received less attention, and the few existing studies make comparisons across major religious traditions. In this study, we focus on variations in levels of female decision-making autonomy within a single religious tradition—Christianity. Using unique survey data from a predominantly Christian area in Mozambique, we devise an autonomy scale and apply it to compare women affiliated to different Christian denominations as well as unaffiliated women. In addition to affiliation, we examine the relationship between autonomy and women’s religious agency both within and outside their churches. Multivariate analyses show that women belonging to more liberal religious traditions (such as Catholicism and mainline Protestantism) and tend to have higher autonomy levels, regardless of other factors. These results are situated within the cross-national scholarship on religion and women’s empowerment and are interpreted in the context of gendered religious dynamics in Mozambique and similar developing settings. PMID:26973353

Religious Belonging, Religious Agency, and Women's Autonomy in Mozambique.

PubMed

Agadjanian, Victor; Yabiku, Scott T

2015-09-01

Women's autonomy has frequently been linked with women's opportunities and investments, such as education, employment, and reproductive control. The association between women's autonomy and religion in the developing world, however, has received less attention, and the few existing studies make comparisons across major religious traditions. In this study, we focus on variations in levels of female decision-making autonomy within a single religious tradition-Christianity. Using unique survey data from a predominantly Christian area in Mozambique, we devise an autonomy scale and apply it to compare women affiliated to different Christian denominations as well as unaffiliated women. In addition to affiliation, we examine the relationship between autonomy and women's religious agency both within and outside their churches. Multivariate analyses show that women belonging to more liberal religious traditions (such as Catholicism and mainline Protestantism) and tend to have higher autonomy levels, regardless of other factors. These results are situated within the cross-national scholarship on religion and women's empowerment and are interpreted in the context of gendered religious dynamics in Mozambique and similar developing settings.

Social values and health priority setting in Australia: an analysis applied to the context of health technology assessment.

PubMed

Whitty, Jennifer A; Littlejohns, Peter

2015-02-01

To describe the role of social values in priority setting related to health technology assessment processes and decision-making in Australia. The processes and decision criteria of the Pharmaceutical and Medical Benefits Advisory Committees are described based on literature and policy sources, and analysed using a framework for identifying social values in priority-setting. Transparency and accountability of processes are apparent. Participation balances inclusiveness and effectiveness of decision-making, but presents an opportunity to enhance priority setting processes. Clinical and cost-effectiveness are important content considerations. Social values related to justice/equity are considered, without quantification of criteria weights for equity relative to other factors. HTA processes support solidarity through subsidising approved technologies for all Australians, whilst retaining autonomy by permitting non-subsidised technologies to be accessed privately, leading to possible tension between the values of solidarity, autonomy and equity. Priority setting related to health technology subsidy incorporates a range of inter-related social values in the processes and content of decision-making. Participation in decision-making could arguably be improved if a patient and public engagement policy were to be formulated alongside more widespread changes across processes to assess social values using approaches such as the Citizens' Jury. Copyright © 2014 Elsevier Ireland Ltd. All rights reserved.

The Role of Patients: Shared Decision-Making.

PubMed

Beers, Emily; Lee Nilsen, Marci; Johnson, Jonas T

2017-08-01

Shared decision-making affords patients and their families the autonomy to make difficult decisions after receiving comprehensive information about medical facts and treatment options. It is essential that patients' values are respected. The essential steps include first informing patients of the need for a decision, then explaining the various facts involved; after which, it is important to elicit patients' preferences and goals. Once the treatment options and outcomes important to patients are identified, an actual decision can be made. This activity is complex and requires a commitment of time and is enhanced through employment of a multidisciplinary team approach. Copyright © 2017 Elsevier Inc. All rights reserved.

Scientific Autonomy and Public Oversight

PubMed Central

Resnik, David B.

2009-01-01

When scientific research collides with social values, science’s right to self-governance becomes an issue of paramount concern. In this article, I develop an account of scientific autonomy within a framework of public oversight. I argue that scientific autonomy is justified because it promotes the progress of science, which benefits society, but that restrictions on autonomy can also be justified to prevent harm to people, society, or the environment, and to encourage beneficial research. I also distinguish between different ways of limiting scientific autonomy, and I argue that government involvement in scientific decision-making should usually occur through policies that control the process of science, rather than policies that control the content of science. PMID:19777124

Enhancing the intrinsic work motivation of community nutrition educators: how supportive supervision and job design foster autonomy.

PubMed

Dickin, Katherine L; Dollahite, Jamie S; Habicht, Jean-Pierre

2011-01-01

Mixed-methods research investigated the work motivation of paraprofessional community nutrition educators (CNEs) delivering a long-running public health nutrition program. In interviews, CNEs (n = 9) emphasized "freedom," supportive supervision, and "making a difference" as key sources of motivation. Community nutrition educator surveys (n = 115) confirmed high levels of autonomy, which was associated with supervisors' delegation and support, CNE decision-making on scheduling and curricula, and job satisfaction. Supervisors (n = 32) rated CNEs' job design as having inherently motivating characteristics comparable to professional jobs. Supervisory strategies can complement job design to create structured, supportive contexts that maintain fidelity, while granting autonomy to paraprofessionals to enhance intrinsic work motivation.

A new threat to pregnant women's autonomy.

PubMed

Johnsen, D

1987-01-01

Courts and legislatures are increasingly being called upon to restrict the autonomy of pregnant women by requiring them to behave in ways that others determine are best for the fetuses they carry. The state should not attempt to transform pregnant women into ideal baby-making machines. Pregnant women make decisions about their behavior in the context of the rest of their lives, with all the attendant complexities and pressures. Our interest in helping future children by improving prenatal care would best be furthered by helping pregnant women to make informed, less constrained choices, not by punishing women or depriving them of choices altogether.

The Effect of School Autonomy and School Internal Decentralization on Students' Reading Literacy

ERIC Educational Resources Information Center

Maslowski, Ralf; Scheerens, Jaap; Luyten, Hans

2007-01-01

Over the past 2 decades, a large number of countries have been engaged in the decentralization of decision-making to schools. Although the motives and incentives for school autonomy are often diverse, it is commonly believed that decentralization will enhance the quality of schooling. Based on a secondary analysis of data from OECD's Programme for…

Achieving fertility control through woman’s autonomy and access to maternal healthcare: Are we on track? In-depth analysis of PDHS-2012-13

PubMed Central

Hassan, Sehar-un-Nisa; Siddiqui, Salma; Mahmood, Ayeshah

2015-01-01

Background and Objective: Fertility control preferences and maternal healthcare have recently become a major concern for developing nations with evidence suggesting that low fertility control rates and poor maternal healthcare are among major obstructions in ensuring health and social status for women. Our objective was toanalyze the factors that influence women’s autonomy, access to maternal healthcare, and fertility control preferences in Pakistan. Methods: Data consisted of 11,761 ever-married women of ages 15-49 years from PDHS, 2012-13. Variables included socio-demographics, women’s autonomy, fertility control preferences and access to maternal healthcare. Results: Findings from multivariate analysis showed that women’s younger age, having less than three number of children and independent or joint decision-making (indicators of high autonomy) remained the most significant predictors for access to better quality maternal healthcare and better fertility control preferences when other variables were controlled. Conclusion: Women’s access to good quality maternal health care and fertility control preferences are directly and indirectly influenced by their demographic characteristics and decision-making patterns in domestic affairs. PMID:26870096

[Autonomy and informed consent in surgical care-patients' and staff perceptions].

PubMed

Schopp, Anja; Dassen, Theo; Välimäki, Maritta; Leino-Kilpi, Helena; Gasull, Maria; Lemonidou, Chryssoula; Scott, Anne P; Arndt, Marianne

2004-06-01

The aim of this study was to describe autonomy and informed consent in surgical care. The study is a part of the international BIOMED 2 project "Patients' Autonomy and Privacy in Nursing Interventions" (BIOMED2, BMH4-CT98-3555; 1998-2001) supported by the European Commission. For this study, data of patients (n = 254) and nurses (n = 205) in eleven Berlin hospitals and three hospitals outside Berlin were collected by means of a structured questionnaire. The findings of the study indicate, that information-giving was more positive than decision-making. Patients perceived they were more frequently informed about their surgery than about their care. According to the perceptions of nurses the case was reversed. The perceptions of both groups differed, since from the point of view of nurses, patients' autonomy was more frequently heeded and their consent was sought more often than from the point of view of the patients. Patients admitted as emergencies and in multi-bed rooms perceived their autonomy more negatively than those with a planned surgery or in single rooms. Elderly nurses were more frequently than younger nurses of the opinion to grant patients autonomy. Nurses with a longer working experience in nursing care perceived that patients were more frequently asked their consent. Further, nurses with a higher educational qualification and with a higher occupational status perceived decision-making more negatively. The findings of the present study give implications for clinical practice, nursing education, and for further research.

Engagement in decision-making and patient satisfaction: a qualitative study of older patients' perceptions of dialysis initiation and modality decisions.

PubMed

Ladin, Keren; Lin, Naomi; Hahn, Emily; Zhang, Gregory; Koch-Weser, Susan; Weiner, Daniel E

2017-08-01

Although shared decision-making (SDM) can better align patient preferences with treatment, barriers remain incompletely understood and the impact on patient satisfaction is unknown. This is a qualitative study with semistructured interviews. A purposive sample of prevalent dialysis patients ≥65 years of age at two facilities in Greater Boston were selected for diversity in time from initiation, race, modality and vintage. A codebook was developed and interrater reliability was 89%. Codes were discussed and organized into themes. A total of 31 interviews with 23 in-center hemodialysis patients, 1 home hemodialysis patient and 7 peritoneal dialysis patients were completed. The mean age was 76 ± 9 years. Two dominant themes (with related subthemes) emerged: decision-making experiences and satisfaction, and barriers to SDM. Subthemes included negative versus positive decision-making experiences, struggling for autonomy, being a 'good patient' and lack of choice. In spite of believing that dialysis initiation should be the patient's choice, no patients perceived that they had made a choice. Patients explained that this is due to the perception of imminent death or that the decision to start dialysis belonged to physicians. Clinicians and family frequently overrode patient preferences, with patient autonomy honored mostly to select dialysis modality. Poor decision-making experiences were associated with low treatment satisfaction. Despite recommendations for SDM, many older patients were unaware that dialysis initiation was voluntary, held mistaken beliefs about their prognosis and were not engaged in decision-making, resulting in poor satisfaction. Patients desired greater information, specifically focusing on the acuity of their choice, prognosis and goals of care. © The Author 2016. Published by Oxford University Press on behalf of ERA-EDTA. All rights reserved.

Palliative care nursing involvement in end-of-life decision-making: Qualitative secondary analysis.

PubMed

Hernández-Marrero, Pablo; Fradique, Emília; Pereira, Sandra Martins

2018-01-01

Nurses are the largest professional group in healthcare and those who make more decisions. In 2014, the Committee on Bioethics of the Council of Europe launched the "Guide on the decision-making process regarding medical treatment in end-of-life situations" (hereinafter, Guide), aiming at improving decision-making processes and empowering professionals in making end-of-life decisions. The Guide does not mention nurses explicitly. To analyze the ethical principles most valued by nurses working in palliative care when making end-of-life decisions and investigate if they are consistent with the framework and recommendations of the Guide; to identify what disputed/controversial issues are more frequent in these nurses' current end-of-life care practices. Qualitative secondary analysis. Participants/context: Three qualitative datasets including 32 interviews from previous studies with nurses working in palliative care in Portugal. Ethical consideration: Ethical approval was obtained from the Ethics Research Lab of the Instituto de Bioética (Ethics Research Lab of the Institute of Bioethics) (Ref.04.2015). Ethical procedures are thoroughly described. All participant nurses referred to autonomy as an ethical principle paramount in end-of-life decision-making. They were commonly involved in end-of-life decision-making. Palliative sedation and communication were the most mentioned disputed/controversial issues. Autonomy was highly valued in end-of-life care and decision-making. Nurses expressed major concerns in assessing patients' preferences, wishes, and promoting advance care planning. Nurses working in palliative care in Portugal were highly involved in end-of-life decision-making. These processes embraced a collective, inclusive approach. Palliative sedation was the most mentioned disputed issue, which is aligned with previous findings. Communication also emerged as a sensitive ethical issue; it is surprising, however, that only three nurses referred to it. While the Guide does not explicitly mention nurses in its content, this study shows that nurses working in palliative care in Portugal are involved in these processes. Further research is needed on nurses' involvement and practices in end-of-life decision-making.

The professional medical ethics model of decision making under conditions of clinical uncertainty.

PubMed

McCullough, Laurence B

2013-02-01

The professional medical ethics model of decision making may be applied to decisions clinicians and patients make under the conditions of clinical uncertainty that exist when evidence is low or very low. This model uses the ethical concepts of medicine as a profession, the professional virtues of integrity and candor and the patient's virtue of prudence, the moral management of medical uncertainty, and trial of intervention. These features combine to justifiably constrain clinicians' and patients' autonomy with the goal of preventing nondeliberative decisions of patients and clinicians. To prevent biased recommendations by the clinician that promote such nondeliberative decisions, medically reasonable alternatives supported by low or very low evidence should be offered but not recommended. The professional medical ethics model of decision making aims to improve the quality of decisions by reducing the unacceptable variation that can result from nondeliberative decision making by patients and clinicians when evidence is low or very low.

Paradox of choice and the illusion of autonomy: The construction of ethical subjects in right-to-die activism.

PubMed

Gandsman, Ari

2018-01-01

The right to die is an issue is predicated on larger cultural understandings of autonomy. Autonomy, in turn, is centered around assumptions of choice, that individuals are able to make health-related decisions based on a rational calculation. In such a way, a medically assisted death is differentiated from suicide. Through an ethnographic study of right-to-die activists in North America and Australia and how they understand ideals of "good deaths," this article will complicate this view by examining the ethical subject constructed by such activism that reveals autonomy to be a useful guiding fiction that mask larger ethical relationships.

Family reliance on physicians' decisions in life-sustaining treatments in acute-on-chronic respiratory diseases in a respiratory ICU: a single-center study.

PubMed

Monteiro, Filipe

2014-03-01

In ICUs, many patients are unable to participate in decision-making regarding life-sustaining treatments. This study evaluated the opinions of family members about family and physician participation in life-sustaining treatment decisions and examined factors that influence those decisions. This was a prospective exploratory observational study that used convenience sampling. Inquiry interviews were conducted over a 3-year period, with 126 family members (out of 303 potential participants) of patients with acute-on-chronic respiratory failure, who had been admitted to the respiratory ICU and were dependent on invasive or noninvasive mechanical ventilation. Patients of ≤ 18 years old, with a stay of < 3 days, and oncologic patients were excluded. Ninety-eight percent (123/126) of the participant family members had an opinion about their involvement in decision-making about life-sustaining treatments. Physician choice was preferred by 54/123 (44%), 55/123 (45%) wished to share the decision with the physician, and 14/123 (11%) wished the family to decide. All the patients were incompetent at the time of inquiry. Autonomy prior to admission to the respiratory ICU influenced the decision. A majority of the families relied on physicians to help in the decision-making process about life-sustaining treatments in patients with acute-on-chronic respiratory diseases. From the family's point of view, the principle of autonomy can be exercised by delegating the decision-making process to the physician. To assume a uniform ethical conduct is to antagonize the definition of ethics.

Voice, Collaboration and School Culture: Creating a Community for School Improvement. Evaluation of the Pioneer SCBM Schools, Hawaii's School/Community-Based Management Initiative.

ERIC Educational Resources Information Center

Izu, Jo Ann; And Others

Hawaii's School/Community-Based Management Initiative (SCBM), which was enacted into law in 1989, is part of a national trend toward decentralizing decision making and increasing school autonomy that arose during the 1980s. A voluntary program, SCBM offers schools flexibility, autonomy, and a small amount of resources in exchange for…

Humans and Autonomy: Implications of Shared Decision Making for Military Operations

DTIC Science & Technology

2017-01-01

and machine learning transparency are identified as future research opportunities. 15. SUBJECT TERMS autonomy, human factors, intelligent agents...network as either the mission changes or an agent becomes disabled (DSB 2012). Fig. 2 Control structures for human agent teams. Robots without tools... learning (ML) algorithms monitor progress. However, operators have final executive authority; they are able to tweak the plan or choose an option

Autonomy and reason: treatment choice in breast cancer.

PubMed

Twomey, Mary

2012-10-01

The practice of offering choice to those women with breast cancer for whom either breast conserving surgery or mastectomy would be equally beneficial has come to be seen as an important aspect of medical care. As well as improving satisfaction with treatment, this is seen as satisfying the ethical principle of respect for autonomy. A number of studies, however, show that women are not always comfortable with such choice, preferring to leave treatment decisions to their surgeons. A question then arises as to the extent that these women can be seen as autonomous or as exercising autonomy. This paper argues, however, that the understanding of autonomy which is applied in current approaches to breast cancer care does not adequately support the exercise of autonomy, and that the clinical context of care means that women are not able to engage in the kind of reasoning that might promote the exercise of autonomy. Where respect for autonomy is limited to informed consent and choice, there is a danger that women's interests are overlooked in those aspects of their care where choice is not appropriate, with very real, long-term consequences for some women. Promoting the exercise of autonomy, it is argued, needs to go beyond the conception of autonomy as rational individuals making their own decisions, and clinicians need to work with an understanding of autonomy as relational in order to better involve women in their care. © 2012 Blackwell Publishing Ltd.

Resource Analysis of Cognitive Process Flow Used to Achieve Autonomy

DTIC Science & Technology

2016-03-01

to be used as a decision - making aid to guide system designers and program managers not necessarily familiar with cognitive pro- cessing, or resource...implementing end-to-end cognitive processing flows multiplies and the impact of these design decisions on efficiency and effectiveness increases [1]. The...end-to-end cognitive systems and alternative computing technologies, then system design and acquisition personnel could make systematic analyses and

Medical decision and patient's preference: 'much ethics' and more trust always needed.

PubMed

Anyfantakis, Dimitrios; Symvoulakis, Emmanouil K

2011-01-01

There is much discussion on medical ethics literature regarding the importance of the patients' right for self-determination. We discuss some of the limitations of patient's autonomy with the aim to draw attention to the ethical complexity of medical decision making in the everyday clinical practice.

Shared decision making, paternalism and patient choice.

PubMed

Sandman, Lars; Munthe, Christian

2010-03-01

In patient centred care, shared decision making is a central feature and widely referred to as a norm for patient centred medical consultation. However, it is far from clear how to distinguish SDM from standard models and ideals for medical decision making, such as paternalism and patient choice, and e.g., whether paternalism and patient choice can involve a greater degree of the sort of sharing involved in SDM and still retain their essential features. In the article, different versions of SDM are explored, versions compatible with paternalism and patient choice as well as versions that go beyond these traditional decision making models. Whenever SDM is discussed or introduced it is of importance to be clear over which of these different versions are being pursued, since they connect to basic values and ideals of health care in different ways. It is further argued that we have reason to pursue versions of SDM involving, what is called, a high level dynamics in medical decision-making. This leaves four alternative models to choose between depending on how we balance between the values of patient best interest, patient autonomy, and an effective decision in terms of patient compliance or adherence: Shared Rational Deliberative Patient Choice, Shared Rational Deliberative Paternalism, Shared Rational Deliberative Joint Decision, and Professionally Driven Best Interest Compromise. In relation to these models it is argued that we ideally should use the Shared Rational Deliberative Joint Decision model. However, when the patient and professional fail to reach consensus we will have reason to pursue the Professionally Driven Best Interest Compromise model since this will best harmonise between the different values at stake: patient best interest, patient autonomy, patient adherence and a continued care relationship.

Father- and Mother-Adolescent Decision-Making in Mexican-Origin Families

PubMed Central

Perez-Brena, Norma; Updegraff, Kimberly A.; Umaña-Taylor, Adriana J.

2013-01-01

Understanding the prevalence and correlates of decisional autonomy within specific cultural contexts is necessary to fully understand how family processes are embedded within culture. The goals of this study were to describe mothers’ and fathers’ decision-making with adolescents (M = 12.51 years, SD = 0.58; 51% female), including parent-unilateral, joint, and youth-unilateral decision-making, and to examine the socio-cultural and family characteristics associated with these different types of decision-making in 246 Mexican-origin families. Mothers reported more joint and youth-unilateral decision-making and less parent-unilateral decision-making than did fathers. Fathers reported more youth-unilateral decision-making with sons than with daughters. Further, for mothers, more traditional gender role attitudes and higher levels of mother-adolescent conflict were associated with more parent-unilateral and less joint decision-making. In contrast, for fathers, lower levels of respect values were associated with more youth-unilateral decision-making with sons, and higher levels of parent-adolescent warmth was associated with more youth-unilateral decision-making with daughters. The importance of understanding the different correlates of mothers’ and fathers’ decision-making with sons versus daughters is discussed. PMID:21484288

Avoiding harm and supporting autonomy are under-prioritised in cancer-screening policies and practices.

PubMed

Parker, Lisa; Carter, Stacy; Williams, Jane; Pickles, Kristen; Barratt, Alexandra

2017-11-01

The ethical principles of avoiding harm and supporting autonomy are relevant to cancer-screening policy. We argue that more attention needs to be given to implementing them. Cancer screening may deliver excessive harms due to low-value or outdated screening programs and from poorly communicated screening options that leave people with heavy burdens of decision-making. Autonomy is inadequately supported due to limited opportunities for people to understand downsides of screening and because of institutional and societal pressures in favour of screening. Members of screening policy committees may have differing ideas about the goals of screening or have conflicts of interest that prevent them from addressing policy questions in a neutral way. We recommend the following: 1. Committees should be required to discern and discuss the values of individual members and the wider public; 2. Committee membership and voting procedures should be more carefully constructed to reduce the likelihood that committee members' interests are placed above public interests; 3. Committees should explain their policy decisions with reference to values as well as evidence, so that values considered in decision-making can be interrogated and challenged if necessary. These changes would increase the likelihood that cancer-screening policy decisions are in keeping with public views about what is important. Copyright © 2017 Elsevier Ltd. All rights reserved.

Regional resources buffer the impact of functional limitations on perceived autonomy in older adults with multiple illnesses.

PubMed

Schüz, Benjamin; Westland, Josh N; Wurm, Susanne; Tesch-Römer, Clemens; Wolff, Julia K; Warner, Lisa M; Schwarzer, Ralf

2016-03-01

Retaining perceptions of autonomy is a key component of successful aging. Perceived autonomy refers to the capacity to make and enact self-directed decisions. These perceptions are often threatened in older adults with multiple illnesses, when functional limitations resulting from these illnesses impede the enactment of self-directed decisions. Regional resources (in Germany specifically at the level of administrative districts) might counteract these impediments of autonomy. Economically stronger districts can provide more-concrete support resources for older adults, buffering the negative effect of functional limitations on self-perceived autonomy. This study assessed participants aged over 65 with 2 or more chronic conditions. In total, N = 287 provided data (Mage = 73.3, SD = 5.07), and n = 97 were women. Gross domestic product (GDP) per capita was used as a proxy measure of administrative district wealth in Germany. Hierarchical multilevel regression analyses with cross-level interactions were conducted. Results suggest that the detrimental effect of functional limitations on perceived autonomy is less pronounced for participants residing in higher GDP districts. Conversely, for participants in lower GDP districts, the effect is exacerbated. This finding suggests that districts with greater financial resources might be better able to invest in supports that promote and facilitate autonomy and, thus, provide a buffer against threats to individual perceived autonomy. (c) 2016 APA, all rights reserved).

Mothers' autonomy and childhood stunting: evidence from semi-urban communities in Lao PDR.

PubMed

Kamiya, Yusuke; Nomura, Marika; Ogino, Hina; Yoshikawa, Kanako; Siengsounthone, Latsamy; Xangsayarath, Phonepadith

2018-05-22

Childhood stunting (height-for-age z-scores below - 2), a form of chronic undernutrition, remains a global health burden. Although a growing literature has examined the association between mothers' autonomy and childhood stunting, these studies have been limited to countries in South Asia or Sub-Saharan Africa where women have relatively lower social status than do men. Little research has analyzed the effect of mothers' autonomy on childhood stunting in Lao PDR, where women's social status is relatively high compared to that in other countries. We conducted a cross-sectional questionnaire and body scale measurement targeting 100 mothers and their 115 children (<5 years old) from semi-urban communities in Lao PDR, which is the country with the highest prevalence of childhood stunting in the Indochina region. As dimensions of women's autonomy, we measured self-esteem, self-efficacy, decision-making power, freedom of mobility, and control of money. We then analyzed how each dimension was associated with the likelihood of childhood stunting. The likelihood of childhood stunting was significantly lower if mothers had higher self-efficacy for health care (OR = 0.15, p = 0.007), self-esteem (OR = 0.11, p = 0.025), or control of money (OR = 0.11, p = 0.041). In contrast, mothers' decision-making power and freedom of mobility were not significantly associated with childhood stunting. We clarified which dimensions of women's autonomy were associated with childhood stunting in Lao PDR. A closer examination of mothers' autonomy will aid proper understanding of the determinants of childhood stunting.

Cultural orientations, parental beliefs and practices, and latino adolescents' autonomy and independence.

PubMed

Roche, Kathleen M; Caughy, Margaret O; Schuster, Mark A; Bogart, Laura M; Dittus, Patricia J; Franzini, Luisa

2014-08-01

Despite the salience of behavioral autonomy and independence to parent-child interactions during middle adolescence, little is known about parenting processes pertinent to youth autonomy development for Latino families. Among a diverse sample of 684 Latino-origin parent-adolescent dyads in Houston, Texas, this study examines how parents' cultural orientations are associated directly and indirectly, through parental beliefs, with parenting practices giving youth behavioral autonomy and independence. Informed by social domain theory, the study's parenting constructs pertain to youth behaviors in an "ambiguously personal" domain-activities that adolescents believe are up to youth to decide, but which parents might argue require parents' supervision, knowledge, and/or decision-making. Results for latent profile analyses of parents' cultural identity across various facets of acculturation indicate considerable cultural heterogeneity among Latino parents. Although 43% of parents have a Latino cultural orientation, others represent Spanish-speaking/bicultural (21%), bilingual/bicultural (15%), English-speaking/bicultural (15%), or US (6%) cultural orientations. Structural equation modeling results indicate that bilingual/bicultural, English-speaking/bicultural, and US-oriented parents report less emphasis on the legitimacy of parental authority and younger age expectations for youth to engage in independent behaviors than do Latino-oriented parents. Parental beliefs endorsing youth's behavioral independence and autonomy, in turn, are associated with less stringent parental rules (parental report), less parental supervision (parental and youth report), and more youth autonomy in decision-making (parental and youth report). Evidence thus supports the idea that the diverse cultural orientations of Latino parents in the US may result in considerable variations in parenting processes pertinent to Latino adolescents' development.

Healthcare professionals' dilemmas: judging patient's decision making competence in day-to-day care of patients suffering from Korsakoff's syndrome.

PubMed

van den Hooff, Susanne; Buijsen, Martin

2014-11-01

Patient's decision making competence (PDMC) is a widely discussed subject. Issues of competence, autonomy, well-being and protection of the patient come up every day. In this article we analyse what role PDMC plays in Dutch legislation and what dilemmas healthcare professionals may experience, notably in patients suffering from Korsakoff's syndrome. Dilemmas emerge if professionals want to meet the requirements mentioned in Dutch law and the desires of their patients. The autonomy of the patient and the healthcare professionals' duty to take care of their patient's best interests, create a tension and lead to uncomfortable situations. Healthcare professionals describe difficulty finding a balance between these issues and assessing the degree of mental competence still present. In long term care situations, quality of the relationship between healthcare professionals and their patients seems to be of much more importance in decision making on minor issues of competence than simply relying on legal or house rules. In being committed to their cases, professionals will be more sensitive to individuals habits, abilities, welfare and dignity, which will make it easier to decide on issues of competence, and to find creative solutions to their dilemmas.

Considerations of informed consent and decision-making competence in older adults with cognitive impairment.

PubMed

Mayo, Ann M; Wallhagen, Margaret I

2009-04-01

Including older adults with cognitive impairment in research studies is necessary to ensure that interventions designed to improve care are effective for all older adults. However, issues related to capacity to consent raise many difficult questions that nurse researchers must address. Protecting vulnerable participants while simultaneously maintaining autonomy and moving important research forward can be challenging. Assessing the decision-making abilities of understanding, appreciation, reasoning, and expressing a choice is an important aspect of determining decision-making capacity. Yet although this is the prominent rational method for judging decision-making competence, it does not take into consideration the importance of culture, values, and emotions. This article focuses on the assessment of decision-making capacity to consent, recommendations for obtaining informed consent in older adults with cognitive impairment, the use of surrogate decision makers, strategies to maximize research participation, and directions for future research. Copyright 2009, SLACK Incorporated.

[In the beginning was a relationship].

PubMed

Vanbelle, Guido

2008-01-01

Judgment and actions based on scientific evidence are modified by the unique caregiver-patient relationship. Caregivers relying exclusively upon "rational" decisions in line with evidence-based clinical recommendations avoid their relational responsibility. The "noble" purpose illustrates that decisions to treat can be at the same time pointless and valuable. Dia (through) - logue (knowledge) makes it possible to go beyond informed consent, which holds caregivers responsible for providing information and patients for the decision to treat. Finally, where healing is no longer achievable and autonomy dies away, compassion rather than therapeutic tenacity might be the answer. These examples are explained corresponding to the philosophical ideas of respectively Emmanuel Levinas en Roger Burgraeve (noble purpose), Martin Buber (dialogical thinking) and Daniel C. Dennett (autonomy loss).

Assessment of Healthcare Decision-making Capacity

PubMed Central

Palmer, Barton W.; Harmell, Alexandrea L.

2016-01-01

It is often necessary for neuropsychologists, clinical psychologists, and other healthcare professionals to assess an individual's capacity to consent to treatment related to healthcare. This task can be challenging and requires a delicate balance of both respect for individuals' autonomy, as well as the protection of individuals with diminished capacity to make an autonomous decision. The purpose of the present review is to provide an overview of the conceptual model of decisional capacity as well as a brief summary of some of the currently available instruments designed to help evaluate medical decision making. In addition, current empirical literature on the relationship between neuropsychological abilities and decision-making capacity is discussed and a brief set of recommendations is provided to further aid clinicians or consultants when they are required to complete the ethically important but difficult task of making determinations about healthcare decision-making capacity. PMID:27551024

Compulsory treatment and patient responsibility.

PubMed

Arya, Dinesh

2012-12-01

Current legislative provisions for compulsory treatment of people with mental illness allow decisions to treat people under compulsion to be made on the basis of presence of a mental illness or mental disorder without consideration of whether the patient has the capacity to make decisions that are in his/her best interest. Issues of autonomy, equity, justice and beneficence in relation to treatment of people with mental illness are explored to determine decision-making rules that should be applied for compulsory mental health treatment. It is proposed that assessment of the capacity of the individual to make decisions in his/her best interest, rather than presence of diagnosable mental illness, should be the key consideration for compulsory mental health treatment.

Medical Decision and Patient's Preference: 'Much Ethics' and More Trust Always Needed

PubMed Central

Anyfantakis, Dimitrios; Symvoulakis, Emmanouil K

2011-01-01

There is much discussion on medical ethics literature regarding the importance of the patients' right for self-determination. We discuss some of the limitations of patient's autonomy with the aim to draw attention to the ethical complexity of medical decision making in the everyday clinical practice. PMID:21647328

School-Based Budgeting: Increasing Influence and Information at the School Level in Rochester, New York.

ERIC Educational Resources Information Center

Moser, Michelle

1998-01-01

Using survey and interview responses, examines school members' perceptions of school autonomy over budget decisions, availability of budget information at the school level, and members' willingness to engage in shared decision making in Rochester, New York. Results suggest there are implementation barriers in Rochester pilot schools. Participants…

Beyond shared decision-making: Collaboration in the age of recovery from serious mental illness.

PubMed

Treichler, Emily B H; Spaulding, William D

2017-01-01

The role that people with serious mental illness (SMI) play in making decisions about their own treatment and rehabilitation is attracting increasing attention and scrutiny. This attention is embedded in a broader social/consumer movement, the recovery movement , whose agenda includes extensive reform of the mental health system and advancing respect for the dignity and autonomy of people with SMI. Shared decision-making (SDM) is an approach for enhancing consumer participation in health-care decision-making. SDM translates straightforwardly to specific clinical procedures that systematically identify domains of decision-making and guide the practitioner and consumer through making the decisions. In addition, Collaborative decision-making (CDM) is a set of guiding principles that avoids the connotations and limitations of SDM. CDM looks broadly at the range of decisions to be made in mental health care, and assigns consumers and providers equal responsibility and power in the decision-making process. It recognizes the diverse history, knowledge base, and values of each consumer by assuming patients can lead and contribute to decision-making, contributing both value-based information and technical information. This article further discusses the importance of CDM for people with SMI. (PsycINFO Database Record (c) 2017 APA, all rights reserved).

Reproductive autonomy of women and girls under the Convention on the Rights of Persons with Disabilities.

PubMed

Ngwena, Charles G

2018-01-01

Women and girls with disabilities have historically been denied the freedom to make their own choices in matters relating to their reproduction. In the healthcare sector they experience multiple discriminatory practices. Women and girls with intellectual disabilities are particularly vulnerable to coerced or forced medical interventions. The present article considers the contribution the Convention on the Rights of Persons with Disabilities makes towards affirming the rights of women and girls with disabilities to enjoy reproductive autonomy, including autonomy related to reproductive health, on an equal basis with individuals without disabilities. The Convention is paradigm-setting in its maximal approach to affirming the rights of individuals with disabilities to make autonomous choices under conditions of equality and non-discrimination. The Convention is the first human rights treaty to clearly affirm that impairment of decision-making skills is not a justification for depriving a person with cognitive or intellectual disability of legal capacity. © 2017 International Federation of Gynecology and Obstetrics.

Professional ethics in extreme circumstances: responsibilities of attending physicians and healthcare providers in hunger strikes.

PubMed

Irmak, Nurbay

2015-08-01

Hunger strikes potentially present a serious challenge for attending physicians. Though rare, in certain cases, a conflict can occur between the obligations of beneficence and autonomy. On the one hand, physicians have a duty to preserve life, which entails intervening in a hunger strike before the hunger striker loses his life. On the other hand, physicians' duty to respect autonomy implies that attending physicians have to respect hunger strikers' decisions to refuse nutrition. International medical guidelines state that physicians should follow the strikers' unpressured advance directives. When physicians encounter an unconscious striker, in the absence of reliable advance directives, the guidelines advise physicians to make a decision on the basis of the patient's values, previously expressed wishes, and best interests. I argue that if there are no advance directives and the striker has already lost his competence, the physician has the responsibility to resuscitate the striker. Once the striker regains his decision-making capacity, he should be asked about his decision. If he is determined to continue fasting and refuses treatment, the physician has a moral obligation to respect this decisions and follow his advance directives.

Family Decision Making and Self-Determination Among Consumers With Schizophrenia in China: Cross-Cultural Implications.

PubMed

Chen, Ying; Lam, Chow S; Deng, Hong; Corrigan, Patrick W; Yau, Eva

2018-04-01

Self-determination is viewed as an important ingredient of successful recovery in psychiatric rehabilitation. The concept of autonomy, a key component of self-determination, may be of less importance in Chinese cultures, whereby an individual's choices may be in conflict with the family's expectations. This study aimed to develop an instrument to measure opinions about self-determination among Chinese consumers and their family members. A 27-item questionnaire, the Consumer and Family Decision Making Scale (CFDMS), was constructed to measure consumers' and family members' views of self-determination in various aspects of daily life. A total of 364 (182 consumers of psychiatric services with a diagnosis of schizophrenia and 182 of their family members) participated in the study. The CFDMS was found to possess good psychometric properties and appears to be a reliable and valid instrument for assessment of consumers' decision making. (The Cronbach's alphas of psychiatric care and treatment factor, personal and social function factor, community and daily living factor, and money management factor were as follows: .86, .89, .87 and .76. The respective test-retest reliabilities were as follows: .81, .89, .80, and .88). Chinese consumers preferred autonomous decision making in regard to personal and social functioning and community and daily living but preferred to defer decisions regarding psychiatric care and treatment and money management to others. Family members and consumers had similar views. Deferring decisions to family members is common in Chinese families. The emphasis on autonomy in Western health care may need to be reconsidered in the treatment of Chinese consumers. Chinese families have a strong influence on treatment decisions, and providers must respect this style and remain nonjudgmental when dealing with situations or decisions that may be contradictory to their own culture and values.

Complexity science and participation in decision making among Taiwanese nurses.

PubMed

Liu, Yi

2008-04-01

The perspective of interconnection in complexity science is used to examine the concept of participation in decision making among Taiwanese nurses in the context of Chinese communication culture. Participation in decision making among nurses has been widely discussed and tested in the Western healthcare systems. Many studies have shown that participation in decision making relates to nurses' autonomy, job satisfaction and quality of care. However, participation in decision making has not been fully discussed in Taiwan's nursing community. In a different cultural environment, participation in decision making may have different effects. The concept of participation in decision making is analysed in three facets of Chinese communication culture: (1) hierarchical social relationship; (2) harmony maintenance; and (3) insider effects. Key issues Taiwanese nurses might establish different levels of participation and need to use different strategies to enhance participation in decision making for desired outcomes. While applying participation in decision making in a different context, it is very important to consider the social and cultural differences. Two implications are made. First, nursing leaders/managers who are working with a multicultural team should be aware of the cultural difference in the pattern of interaction in the process of participation in decision making. Second, leaders/managers should be creative and try to apply different strategies to encourage staff's participation in decision making.

Evidence, values, guidelines and rational decision-making.

PubMed

Barrett, Bruce

2012-02-01

Medical decision-making involves choices, which can lead to benefits or to harms. Most benefits and harms may or may not occur, and can be minor or major when they do. Medical research, especially randomized controlled trials, provides estimates of chance of occurrence and magnitude of event. Because there is no universally accepted method for weighing harms against benefits, and because the ethical principle of autonomy mandates informed choice by patient, medical decision-making is inherently an individualized process. It follows that the practice of aiming for universal implementation of standardized guidelines is irrational and unethical. Irrational because the possibility of benefits is implicitly valued more than the possibility of comparable harms, and unethical because guidelines remove decision making from the patient and give it instead to a physician, committee or health care system. This essay considers the cases of cancer screening and diabetes management, where guidelines often advocate universal implementation, without regard to informed choice and individual decision-making.

Ethical issues in neurogenetics.

PubMed

Uhlmann, Wendy R; Roberts, J Scott

2018-01-01

Many neurogenetic conditions are inherited and therefore diagnosis of a patient will have implications for the patient's relatives and can raise ethical issues. Predictive genetic testing offers asymptomatic relatives the opportunity to determine their risk status for a neurogenetic condition, and professional guidelines emphasize patients' autonomy and informed, voluntary decision making. Beneficence and nonmaleficence both need to be considered when making decisions about disclosure and nondisclosure of genetic information and test results. There can be disclosure concerns and challenges in determining whose autonomy to prioritize when a patient makes a genetic testing decision that can reveal the genetic status of a relative (e.g., testing an adult child when the at-risk parent has not been tested). Ethical issues are prominent when genetic testing for neurogenetic conditions is requested prenatally, on minors, adoptees, adult children at 25% risk, and for individuals with psychiatric issues or cognitive impairment. Neurogenetic conditions can result in cognitive decline which can affect decisional capacity and lead to ethical challenges with decision making, informed consent, and determining the patient's ability to comprehend test results. The ethical implications of genetic testing and emerging issues, including direct-to-consumer genetic testing, disclosure of secondary findings from genomic sequencing, and use of apolipoprotein E testing in clinical and research settings, are also discussed. Resources for information about genetic testing practice guidelines, insurance laws, and directories of genetics clinics are included. Copyright © 2018 Elsevier B.V. All rights reserved.

Ethical Issues in Neurogenetics

PubMed Central

Uhlmann, Wendy R.; Roberts, J. Scott

2018-01-01

Many neurogenetic conditions are inherited and therefore diagnosis of a patient will have implications for their relatives and can raise ethical issues. Predictive genetic testing offers asymptomatic relatives the opportunity to determine their risk status for a neurogenetic condition, and professional guidelines emphasize patients’ autonomy and informed, voluntary decision-making. Beneficence and non-maleficence both need to be considered when making decisions about disclosure and nondisclosure of genetic information and test results. There can be disclosure concerns and issues of determining whose autonomy to prioritize when a patient makes a genetic testing decision that can reveal the genetic status of a relative (e.g. testing an adult child when the at-risk parent has not been tested). Ethical issues are prominent when genetic testing for neurogenetic conditions is requested prenatally, on minors, adoptees, adult children at 25% risk, and for individuals with psychiatric issues or cognitive impairment. Neurogenetic conditions can result in cognitive decline which can affect decisional capacity and lead to ethical challenges with decision-making, informed consent and determining the patient’s ability to comprehend test results. The ethical implications of genetic testing and emerging issues, including direct-to-consumer genetic testing, disclosure of secondary findings from genomic sequencing, and use of APOE testing in clinical and research settings, are also discussed. Resources for information about genetic testing practice guidelines, insurance laws and directories of genetics clinics are included. PMID:29325614

Can procedural and substantive elements of decision-making be reconciled in assessments of mental capacity?

PubMed Central

Banner, Natalie F.

2016-01-01

Capacity legislation aims to protect individual autonomy and avoid undue paternalism as far as possible, partly through ensuring patients are not deemed to lack capacity because they make an unwise decision. To this end, the law employs a procedural test of capacity that excludes substantive judgments about patients’ decisions. However, clinical intuitions about patients’ capacity to make decisions about their treatment often conflict with a strict reading of the legal criteria for assessing capacity, particularly in psychiatry. In this article I argue that this tension arises because the procedural conception of capacity is inadequate and does not reflect the clinical or legal realities of assessing capacity. I propose that conceptualising capacity as having ‘recognisable reasons’ for a treatment decision provides a practical way of legitimately incorporating both procedural and substantive elements of decision-making into assessments of capacity. PMID:27891169

Barriers to intensive care unit nurses' autonomy in Iran: A qualitative study.

PubMed

AllahBakhshian, Maryam; Alimohammadi, Nasrollah; Taleghani, Fariba; Nik, Ahmadreza Yazdan; Abbasi, Saeed; Gholizadeh, Leila

The acute nature of the intensive care unit (ICU) environment necessitates that urgent clinical decisions are frequently made by the health care team. Therefore, it is important that critical care nurses have the authority to make decisions about their patient care. The purpose of this study was to explore perceived barriers to the practice of professional autonomy from the perspectives of ICU nurses in Iran. In this qualitative study, 28 critical care nurses were interviewed using a semistructured in-depth interview method. The interviews were recorded, transcribed verbatim, and analyzed using content analysis. Data analysis led to identification of two main themes and five subthemes: (a) the profession-related barriers with two associated subthemes of "lack of capacity to exercise autonomy" and "lack of strong professional bodies"; (b) organizational barriers with the associated subthemes of "role ambiguity," "a directive rather than supportive workplace," and "lack of motivation." ICU nurses in Iran may face many challenges in gaining professional autonomy. The identified inter- and intraprofessional barriers to the exercise of autonomy need to be addressed to promote critical thinking, job satisfaction, and motivation of ICU nurses, which can in turn lead to improved patient outcomes. Copyright © 2016 Elsevier Inc. All rights reserved.

Negotiation for safer sex among married women in Cambodia: the role of women's autonomy.

PubMed

Ung, Mengieng; Boateng, Godfred O; Armah, Frederick A; Amoyaw, Jonathan A; Luginaah, Isaac; Kuuire, Vincent

2014-01-01

Negotiating safer sex among married women has been identified as an important determinant of vulnerability or resilience to new HIV infections. Using the Cambodia Demographic and Health Survey data of 2010, this paper examined negotiation for safer sex among 11,218 married women in the context of Cambodia's highly touted reduction in HIV/AIDS prevalence. The results from a complementary log-log regression model indicate that wealthier and highly educated married women were more likely to report that they can refuse sexual intercourse and ask their husbands to use a condom. Interestingly, while women who were fully involved in decision-making on their own health care were 19% more likely to refuse sex, they were 14% less likely to be able to ask their husbands to use a condom, compared with their counterparts who were not involved in this decision-making. Women who were partially involved in decision-making on family visits were 17% less likely to be able to ask their husbands to use a condom compared with those who were not involved. In this context, involvement in decision-making may have translated into trust and risk compensation. Those who believed in HIV transmission myths were less likely to negotiate safer sex relative to their counterparts who did not hold such myths to be true. Women's ability to negotiate for safer sex is, therefore, a function of their autonomy in terms of their full participation in decision-making in health care, household expenditure and mobility. Policy implications of the capacity of women to negotiate for safer sex are delineated.

Choosing homebirth--the women's perspective.

PubMed

Jouhki, Maija-Riitta

2012-12-01

To describe the decision-making process and birth experience of ten women in Finland who had planned to have a home birth. The data were collected by means of in-depth interviews in 2008 and were analyzed using qualitative content analysis. Several reasons led to a decision to give birth at home. The main reasons were: previous birth experience, considering birth to be a natural process, increased autonomy, the home environment, intuition, the desire to choose the birth attendant, mistrust of the medical establishment and the opportunity to have the baby's siblings present at the birth. There were inhibiting and facilitating factors which influenced the women's decisions, and before making their decisions women sought out information about home birth. Home birth was an extremely positive experience and women highlighted their desire for the development of parent education to empower women in their preparations for birth. Full autonomy, the participation of family members, trust in one's ability to give birth and the absence of pharmacological pain relief were major contributors to the positive birth experience. The need for empowerment through parent education was highlighted in the interviews. To the women of this study home birth was very positive experience in which the autonomy was the important factor. According to this study maternity care services do not respond to women's individual wishes and services should be offer more alternatives and should be more empowering. Copyright © 2011 Australian College of Midwives. Published by Elsevier Ltd. All rights reserved.

Orphan/vulnerable child caregiving moderates the association between women's autonomy and their BMI in three African countries.

PubMed

Kanamori, Mariano; Carter-Pokras, Olivia; Madhavan, Sangeetha; Feldman, Robert; He, Xin; Lee, Sunmin

2014-01-01

Enhancement of women's autonomy is a key factor for improving women's health and nutrition. With nearly 12 million orphan and vulnerable children (OVC) in Africa due to HIV/AIDS, the study of OVC primary caregivers' nutrition is fundamental. We investigated the association between married women's autonomy and their nutritional status; explored whether this relationship was modified by OVC primary caregiving; and analyzed whether decision-making autonomy mediated the association between household wealth and body mass index (BMI). This cross-sectional study used the data from Demographic Health Surveys collected during 2006-2007 from 20- to 49-year-old women in Namibia (n = 2633), Swaziland (n = 1395), and Zambia (n = 2920). Analyses included logistic regression, Sobel, and Goodman tests. Our results indicated that women's educational attainment increased the odds for being overweight (Swaziland and Zambia) and decreased the odds for being underweight (Namibia). In Zambia, having at least primary education increased the odds for being overweight only among child primary caregivers regardless of the OVC status of the child, and having autonomy for buying everyday household items increased the odds for being overweight only among OVC primary caregivers. Decision-making autonomy mediated the association between household wealth and OVC primary caregivers' BMI in Zambia (Z = 2.13, p value = 0.03). We concluded that depending on each country's contextual characteristics, having education can decrease the odds for being an underweight woman or increase the odds for being an overweight woman. Further studies should explore why in Namibia education has an effect on women's overweight status only among women who are caring for a child.

Women's autonomy and maternal healthcare service utilization in Ethiopia.

PubMed

Tiruneh, Fentanesh Nibret; Chuang, Kun-Yang; Chuang, Ying-Chih

2017-11-13

Most previous studies on healthcare service utilization in low-income countries have not used a multilevel study design to address the importance of community-level women's autonomy. We assessed whether women's autonomy, measured at both individual and community levels, is associated with maternal healthcare service utilization in Ethiopia. We analyzed data from the 2005 and 2011 Ethiopia Demographic and Health Surveys (N = 6058 and 7043, respectively) for measuring women's decision-making power and permissive gender norms associated with wife beating. We used Spearman's correlation and the chi-squared test for bivariate analyses and constructed generalized estimating equation logistic regression models to analyze the associations between women's autonomy indicators and maternal healthcare service utilization with control for other socioeconomic characteristics. Our multivariate analysis showed that women living in communities with a higher percentage of opposing attitudes toward wife beating were more likely to use all three types of maternal healthcare services in 2011 (adjusted odds ratios = 1.21, 1.23, and 1.18 for four or more antenatal care visits, health facility delivery, and postnatal care visits, respectively). In 2005, the adjusted odds ratios were 1.16 and 1.17 for four or more antenatal care visits and health facility delivery, respectively. In 2011, the percentage of women in the community with high decision-making power was positively associated with the likelihood of four or more antenatal care visits (adjusted odds ratio = 1.14). The association of individual-level autonomy on maternal healthcare service utilization was less profound after we controlled for other individual-level and community-level characteristics. Our study shows that women's autonomy was positively associated with maternal healthcare service utilization in Ethiopia. We suggest addressing woman empowerment in national policies and programs would be the optimal solution.

Orphan/vulnerable child caregiving moderates the association between women’s autonomy and their BMI in three African countries

PubMed Central

Carter-Pokras, Olivia; Madhavan, Sangeetha; Feldman, Robert; He, Xin; Lee, Sunmin

2014-01-01

Enhancement of women’s autonomy is a key factor for improving women’s health and nutrition. With nearly 12 million orphan and vulnerable children (OVC) in Africa due to HIV/AIDS, the study of OVC primary caregivers’ nutrition is fundamental. We investigated the association between married women’s autonomy and their nutritional status; explored whether this relationship was modified by OVC primary caregiving; and, analyzed whether decision-making autonomy mediated the association between household wealth and body mass index (BMI). This cross-sectional study used data from Demographic Health Surveys collected during 2006–2007 from 20–49 year old women in Namibia (n=2,633), Swaziland (n=1,395), and Zambia (n=2,920). Analyses included logistic regression, Sobel and Goodman tests. Our results indicated that women’s educational attainment increased the odds for being overweight (Swaziland and Zambia) and decreased the odds for being underweight (Namibia). In Zambia, having at least primary education increased the odds for being overweight only among child primary caregivers regardless of the OVC status of the child, and having autonomy for buying everyday household items increased the odds for being overweight only among OVC primary caregivers. Decision-making autonomy mediated the association between household wealth and OVC primary caregivers’ BMI in Zambia (Z=2.13, p-value0.03). We concluded that depending on each country’s contextual characteristics, having education can decrease the odds for being an underweight woman or increase the odds for being an overweight woman. Further studies should explore why in Namibia, education has an effect on women’s overweight status only among women who are caring for a child. PMID:24888977

Amyotrophic lateral sclerosis and assisted ventilation: how patients decide.

PubMed

Lemoignan, Josée; Ells, Carolyn

2010-06-01

Throughout the course of their illness, people with amyotrophic lateral sclerosis (ALS) must make many treatment decisions; however, none has such a significant impact on quality of life and survival as decisions about assisted ventilation. The purpose of this study was to better understand the experience of decision-making about assisted ventilation for ALS patients. Using qualitative phenomenology methodology, 10 semi-structured interviews were conducted with persons with ALS and their caregivers to elicit factors that are pertinent to their decision-making process about assisted ventilation. Six main themes emerged from the interviews. (1) the meaning of the intervention - participants made a sharp distinction between non-invasive ventilation, which they viewed as a means to relieve symptoms of respiratory failure, and invasive ventilation, which they viewed as taking over their breathing and thereby saving their life when they otherwise would die, (2) the importance of context - including functional status, available supports, and financial implications, (3) the importance of values - with respect to communication, relationships, autonomy, life, and quality of life, (4) the effect of fears - particularly respiratory distress, chocking, running out of air, and the process of death itself, (5) the need for information - how use of assisted ventilation would impact daily life, how death from respiratory failure would occur, how caregivers and persons with ALS differ in their information needs and common misconceptions, and (6) adaptation to or acceptance of the intervention - a lengthy process that involved gradual familiarization with the equipment and its benefits. People with ALS and caregivers value autonomy in decision-making about assisted ventilation. Their decision-making process is neither wholly rational nor self-interested, and includes factors that health professionals should anticipate and address. Discussions about assisted ventilation and timing should be tailored to each individual and undertaken periodically.

Minor Birth Mothers and Consent to Adoption: An Anomaly in Youth Law.

ERIC Educational Resources Information Center

Durcan, Jennifer; Appell, Annette R.

2001-01-01

Explores different treatment of pregnant minors under adoption and abortion law. Asserts rules governing autonomy of minor decision-making in adoption and abortion are not predicated on any unified theory of child development, protection of pregnant teenagers, or nature and long-term effects of decisions, but rather are motivated by the state's…

The Autonomy to Choose--The Case of Ninth-Grade Mathematics Students

ERIC Educational Resources Information Center

Lavy, Ilana; Zarfin, Orly

2013-01-01

In this study we explored the effects of providing ninth-grade students with the chance to take part in decision making concerning the mathematics level they would be assigned to in high school. Decisions concerned their self-competence regarding their mathematical abilities, their learning goals and the class atmosphere. The students were taught…

Does Remuneration for Plasma Compromise Autonomy?

PubMed

White, Lucie

2015-12-01

In accordance with a recent statement released by the World Health Organization, the Canadian province of Ontario is moving to ban payment for plasma donation. This is partially based on contentions that remuneration for blood and blood products undermines autonomy and personal dignity. This paper is dedicated to evaluating this claim. I suggest that traditional autonomy-based arguments against commodification of human body parts and substances are less compelling in the context of plasma donation in Canada, but that there is another autonomy-based objection to paid plasma donation that has not received sufficient attention. Namely, the stigma that surrounds exchanging plasma for payment makes it difficult to make an autonomous decision to engage in this activity. I suggest that this problem can be overcome in one of two ways; by banning payment for plasma, or by reducing the stigma surrounding this practice. I provide an indication of how we might work to achieve the latter, contending that this possibility should be taken seriously, due to the difficulties in achieving a sufficient supply of plasma without remuneration.

Family Communication about End-of-Life Decisions and the Enactment of the Decision-Maker Role.

PubMed

Trees, April R; Ohs, Jennifer E; Murray, Meghan C

2017-06-07

End-of-life (EOL) decisions in families are complex and emotional sites of family interaction necessitating family members coordinate roles in the EOL decision-making process. How family members in the United States enact the decision-maker role in EOL decision situations was examined through in-depth interviews with 22 individuals who participated in EOL decision-making for a family member. A number of themes emerged from the data with regard to the enactment of the decision-maker role. Families varied in how decision makers enacted the role in relation to collective family input, with consulting, informing and collaborating as different patterns of behavior. Formal family roles along with gender- and age-based roles shaped who took on the decision-maker role. Additionally, both family members and medical professionals facilitated or undermined the decision-maker's role enactment. Understanding the structure and enactment of the decision-maker role in family interaction provides insight into how individuals and/or family members perform the decision-making role within a cultural context that values autonomy and self-determination in combination with collective family action in EOL decision-making.

Respect for rational autonomy.

PubMed

Walker, Rebecca L

2009-12-01

The standard notion of autonomy in medical ethics does not require that autonomous choices not be irrational. The paper gives three examples of seemingly irrational patient choices and discusses how a rational autonomy analysis differs from the standard view. It then considers whether a switch to the rational autonomy view would lead to overriding more patient decisions but concludes that this should not be the case. Rather, a determination of whether individual patient decisions are autonomous is much less relevant than usually considered in determining whether health care providers must abide by these decisions. Furthermore, respect for rational autonomy entails strong positive requirements of respect for the autonomy of the person as a rational decision maker. The rationality view of autonomy is conceptually stronger than the standard view, allows for a more nuanced understanding of the practical moral calculus involved in respecting patient autonomy, and promotes positive respect for patient autonomy.

Perspectives of adolescents on decision making about participation in a biobank study: a pilot study.

PubMed

Grootens-Wiegers, Petronella; Visser, Eline G; van Rossum, Annemarie M C; van Waardhuizen, Claudia N; de Wildt, Saskia N; Sweep, Boudewijn; van den Broek, Jos M; de Vries, Martine C

2017-01-01

To be able to truly involve adolescents in decision making about clinical research participation, we need more insight in the perspective of adolescents themselves. To this end, adolescents in an ongoing biobank study were consulted to test a tentative decision assessment tool. The perspectives of adolescents (n=8) concerning participation in decision making for research participation were explored in interviews with a tentative tool, which covered six topics: information material usage, understanding, disease perceptions, anxiety, decision-making process and role sharing. All adolescents unequivocally expressed the desire to be involved in decision making, but also wanted advice from their parents. The extent of the preferred role of adolescent versus parents varied between individuals. In decision making, adolescents relied on parents for information. More than half hardly used the information material. Adolescents in our study preferred a shared decision-making process. The extent of sharing varied between individuals. The decision assessment tool was a fruitful starting point to discuss adolescents' perspectives and may aid in tailoring the situation to the individual to achieve optimal participation practices. Consulting adolescents about their preferences concerning decision making using the tool will facilitate tailoring of the shared decision-making process and optimising the developing autonomy of minors.

Speech pathologists' experience of involving people with stroke-induced aphasia in clinical decision making during rehabilitation.

PubMed

Berg, Karianne; Rise, Marit By; Balandin, Susan; Armstrong, Elizabeth; Askim, Torunn

2016-01-01

Although client participation has been part of legislation and clinical guidelines for several years, the evidence of these recommendations being implemented into clinical practice is scarce, especially for people with communication disorders. The aim of this study was to investigate how speech pathologists experienced client participation during the process of goal-setting and clinical decision making for people with aphasia. Twenty speech pathologists participated in four focus group interviews. A qualitative analysis using Systematic Text Condensation was undertaken. Analysis revealed three different approaches to client participation: (1) client-oriented, (2) next of kin-oriented and (3) professional-oriented participation. Participants perceived client-oriented participation as the gold standard. The three approaches were described as overlapping, with each having individual characteristics incorporating different facilitators and barriers. There is a need for greater emphasis on how to involve people with severe aphasia in goal setting and treatment planning, and frameworks made to enhance collaboration could preferably be used. Participants reported use of next of kin as proxies in goal-setting and clinical decision making for people with moderate-to-severe aphasia, indicating the need for awareness towards maintaining the clients' autonomy and addressing the goals of next of kin. Speech pathologists, and most likely other professionals, should place greater emphasis on client participation to ensure active involvement of people with severe aphasia. To achieve this, existing tools and techniques made to enhance collaborative goal setting and clinical decision making have to be better incorporated into clinical rehabilitation practice. To ensure the autonomy of the person with aphasia, as well as to respect next of kin's own goals, professionals need to make ethical considerations when next of kin are used as proxies in collaborative goal setting and clinical decision making.

Advance directives outside the USA: are they the best solution everywhere?

PubMed

Sanchez-Gonzalez, M A

1997-09-01

This article evaluates the potential role of advance directives outside of their original North American context. In order to do this, the article first analyses the historical process which has promoted advance directives in recent years. Next, it brings to light certain presuppositions which have given them force: atomistic individualism, contractualism, consumerism and entrepreneurialism, pluralism, proceduralism, and "American moralism." The article next studies certain European cultural peculiarities which could affect advance directives: the importance of virtue versus rights, stoicism versus consumerist utilitarianism, rationalism verus empiricism, statism versus citizens' initiative, and justice versus autonomy. The article concludes by recognising that autonomy has a transcultural value, although it must be balanced with other principles. Advance Directives can have a function in certain cases. But it does not seem adequate to delegate to advance directives more and more medical decisions, and to make them more binding everyday. It is indispensable to develop other decision-making criteria.

Autism, intellectual disability, and a challenge to our understanding of proxy consent.

PubMed

Graber, Abraham

2017-06-01

This paper focuses on a hypothetical case that represents an intervention request familiar to those who work with individuals with intellectual disability. Stacy has autism and moderate intellectual disability. Her parents have requested treatment for her hand flapping. Stacy is not competent to make her own treatment decisions; proxy consent is required. There are three primary justifications for proxy consent: the right to an open future, substituted judgment, and the best interest standard. The right to an open future justifies proxy consent on the assumption of future autonomy whereas substituted judgment justifies proxy consent via reference to past autonomy. Neither applies. Stacy has not been, nor will she be, competent to make her own treatment decisions. The best interest standard justifies proxy consent on the grounds of beneficence. It is unlikely that hand flapping harms Stacy. None of the three primary means of justifying proxy consent apply to Stacy's case.

Comparativism and the Grounds for Person-Centered Care and Shared Decision Making.

PubMed

Herlitz, Anders

2017-01-01

This article provides a new argument and a new value-theoretical ground for person-centered care and shared decision making that ascribes to it the role of enabling rational choice in situations involving clinical choice. Rather than referring to good health outcomes and/or ethical grounds such as patient autonomy, it argues that a plausible justification and ground for person-centered care and shared decision making is preservation of rationality in the face of comparative non-determinacy in clinical settings. Often, no alternative treatment will be better than or equal to every other alternative. In the face of such comparative non-determinacy, Ruth Chang has argued that we can make rational decisions by invoking reasons that are created through acts of willing. This article transfers this view to clinical decision making and argues that shared decision making provides a solution to non-determinacy problems in clinical settings. This view of the role of shared decision making provides a new understanding of its nature, and it also allows us to better understand when caregivers should engage in shared decision making and when they should not. Copyright 2017 The Journal of Clinical Ethics. All rights reserved.

How can surgeons facilitate resident intraoperative decision-making?

PubMed

Hill, Katherine A; Dasari, Mohini; Littleton, Eliza B; Hamad, Giselle G

2017-10-01

Cognitive skills such as decision-making are critical to developing operative autonomy. We explored resident decision-making using a recollection of specific examples, from the attending surgeon and resident, after laparoscopic cholecystectomy. In a separate semi-structured interview, the attending and resident both answered five questions, regarding the resident's operative roles and decisions, ways the attending helped, times when the attending operated, and the effect of the relationship between attending and resident. Themes were extracted using inductive methods. Thirty interviews were completed after 15 cases. Facilitators of decision-making included dialogue, safe struggle, and appreciation for retraction. Aberrant case characteristics, anatomic uncertainties, and time pressures provided barriers. Attending-resident mismatches included descriptions of transitioning control to the attending. Reciprocal dialogue, including concept-driven feedback, is helpful during intraoperative teaching. Unanticipated findings impede resident decision-making, and we describe differences in understanding transfers of operative control. Given these factors, we suggest that pre-operative discussions may be beneficial. Copyright © 2017 Elsevier Inc. All rights reserved.

The rational choice model in family decision making at the end of life.

PubMed

Karasz, Alison; Sacajiu, Galit; Kogan, Misha; Watkins, Liza

2010-01-01

Most end-of-life decisions are made by family members. Current ethical guidelines for family decision making are based on a hierarchical model that emphasizes the patient's wishes over his or her best interests. Evidence suggests that the model poorly reflects the strategies and priorities of many families. Researchers observed and recorded 26 decision-making meetings between hospital staff and family members. Semi-structured follow-up interviews were conducted. Transcriptions were analyzed using qualitative techniques. For both staff and families, consideration of a patient's best interests generally took priority over the patient's wishes. Staff generally introduced discussion of the patient's wishes for rhetorical purposes, such as persuasion. Competing moral frameworks, which de-emphasized the salience of patients' autonomy and "right to choose," played a role in family decision making. The priority given to the patients' wishes in the hierarchical model does not reflect the priorities of staff and families in making decisions about end-of-life care.

The patient's role in clinical decision-making.

PubMed

Brody, D S

1980-11-01

Practicing physicians must frequently make decisions about how much they wish to encourage patient participation in clinical decision-making and how to respond to rational patient demands that do not coincide with their own decisions. These are difficult ethical dilemmas with no indisputable or universal solutions. The traditional concept of the doctor-patient relationship places the patient in a passive, compliant role. The patient's only obligation is to seek competent help and cooperate with the physician. A number of factors have contributed to the continued dominance of the traditional doctor-patient imbalance of power. Despite these factors, there seems to be a great deal of public dissatisfaction with health care delivery in the United States; demands for more patient autonomy are increasing. This paper discusses the concept of mutual participation, presents an approach to encouraging patient participation in clinical decision-making, and considers its theoretical advantages.

[Respecting minors' autonomy in child custody cases].

PubMed

Santa Rosa, Bárbara; Corte-Real, Francisco; Vieira, Duarte Nuno

2013-01-01

Child custody decisions are among the most difficult for judges to make. The possibility of child abuse allegations or parents' deviant/ psychopathologic behaviours within this context, make the decision further complicated. Based on jurisprudence the listening of children opinion is a way to protect their best interest. In fact children have the right to express an opinion in all matters affecting their life. It should be given proper consideration to children opinion according with his/her age and maturity. Nonetheless custody disputes are emotionally draining issues. Asking the child to express an opinion during a public hearing, most likely in the presence of both parents, its not recommended because this is a potential stressful experience. Child interviews should take place in a proper environment and be set to their age. Medicine and Psychology have an important role in assessing children cognitive, emotional and volitional abilities, which is essential to properly account their opinions according to autonomy degree. This essay analyses the contribution of medico-legal and/or psychological exams to respect the autonomy of the child in cases of regulation of parental responsibilities. The conclusion is the need to establish a symbiotic relationship between the medical and legal perspectives of the (open) concept of child's best interests.

Does physician communication style impact patient report of decision quality for breast cancer treatment?

PubMed

Martinez, Kathryn A; Resnicow, Ken; Williams, Geoffrey C; Silva, Marlene; Abrahamse, Paul; Shumway, Dean A; Wallner, Lauren P; Katz, Steven J; Hawley, Sarah T

2016-12-01

Provider communication that supports patient autonomy has been associated with numerous positive patient outcomes. However, to date, no research has examined the relationship between perceived provider communication style and patient-assessed decision quality in breast cancer. Using a population-based sample of women with localized breast cancer, we assessed patient perceptions of autonomy-supportive communication from their surgeons and medical oncologists, as well as patient-reported decision quality. We used multivariable linear regression to examine the association between autonomy-supportive communication and subjective decision quality for surgery and chemotherapy decisions, controlling for sociodemographic and clinical factors, as well as patient-reported communication preference (non-directive or directive). Among the 1690 women included in the overall sample, patient-reported decision quality scores were positively associated with higher levels of perceived autonomy-supportive communication from surgeons (β=0.30; p<0.001) and medical oncologists (β=0.26; p<0.001). Patient communication style preference moderated the association between physician communication style received and perceived decision quality. Autonomy-supportive communication by physicians was associated with higher subjective decision quality among women with localized breast cancer. These results support future efforts to design interventions that enhance autonomy-supportive communication. Autonomy-supportive communication by cancer doctors can improve patients' perceived decision quality. Copyright © 2016 Elsevier Ireland Ltd. All rights reserved.

Does physician communication style impact patient report of decision quality for breast cancer treatment?

PubMed Central

Resnicow, Ken; Williams, Geoffrey C.; Silva, Marlene; Abrahamse, Paul; Shumway, Dean; Wallner, Lauren; Katz, Steven; Hawley, Sarah

2016-01-01

Objective Provider communication that supports patient autonomy has been associated with numerous positive patient outcomes. However, to date, no research has examined the relationship between perceived provider communication style and patient-assessed decision quality in breast cancer. Methods Using a population-based sample of women with localized breast cancer, we assessed patient perceptions of autonomy-supportive communication from their surgeons and medical oncologists, as well as patient-reported decision quality. We used multivariable linear regression to examine the association between autonomy-supportive communication and subjective decision quality for surgery and chemotherapy decisions, controlling for sociodemographic and clinical factors, as well as patient-reported communication preference (non-directive or directive). Results Among the 1,690 women included in the overall sample, patient-reported decision quality scores were positively associated with higher levels of perceived autonomy-supportive communication from surgeons (β=0.30; p<0.001) and medical oncologists (β=0.26; p<0.001). Patient communication style preference moderated the association between physician communication style received and perceived decision quality. Conclusion Autonomy-supportive communication by physicians was associated with higher subjective decision quality among women with localized breast cancer. These results support future efforts to design interventions that enhance autonomy-supportive communication. Practice Implications Autonomy-supportive communication by cancer doctors can improve patients’ perceived decision quality. PMID:27395750

[Experience assisting an AIDS-infected homosexual patient and his same-sex partner make a do-not-resuscitate decision].

PubMed

Wang, Shu-Jang; Lai, Pei-Yu; Liou, Siao-Ying; Ko, Wen-Chien; Ko, Nai-Ying

2012-10-01

Family members play an important role in the process of writing advance directives. Homosexual men infected with HIV often wish to authorize their intimate same-sex partner or friends rather than immediate family members to make medical decisions on their behalf. Although same-sex marriage is currently illegal in Taiwan, HIV infected homosexual patients are able to write advance directives appointing their same-sex partner to be their surrogate decision maker for end-of-life medical decisions. This case report describes an experience assisting a homosexual patient with HIV to write his advance directives. The nurse assisted the patient and his partner to make a self-determined decision not to resuscitate. Family conferences held to discuss the patient's decisions regarding resuscitation helped legitimize his partner's primary role in making end-of-life healthcare decisions on his behalf. As an advocate for patient rights, nurses should understand the law as it relates to homosexuality and end-of-life decision making, inform patients on the durable power of autonomy, and help execute their advance directives.

Teacher Morale: What Builds It, What Kills It.

ERIC Educational Resources Information Center

Brodinsky, Ben

1984-01-01

Results of an American Association of School Administrators study indicate that professional autonomy, daily recognition, and involvement in decision making help build teacher morale. Suggestions for strengthening morale in the school environment and improving productivity are offerend. (DF)

Documenting different domains of promotion of autonomy in families.

PubMed

Manzi, Claudia; Regalia, Camillo; Pelucchi, Sara; Fincham, Frank D

2012-04-01

Parental promotion of autonomy for offspring well-being has been widely recognized in developmental psychology. Recent studies, however, show that this association varies across cultures. Such variation may reflect inappropriate measurement of this dimension of parenting. Therefore, three existing measures of promotion of autonomy were used to derive different dimensions related to the promotion of autonomy in three different domains - promotion of autonomous thought, promotion of autonomous decision-making, and promotion of physical separation. The cross-cultural significance of this three-component model was tested in samples of late adolescents (n = 1361) from four nations- the US, Belgium, Italy and China. Data from all four countries best fit a three dimensional model but the covariance between the three dimensions was moderated by culture. Culture also moderated the impact of promotion of autonomy on offspring well-being. Copyright © 2011 The Foundation for Professionals in Services for Adolescents. Published by Elsevier Ltd. All rights reserved.

The Relationship Between Autonomy and Relatedness and Adolescents’ Adrenocortical and Cardiovascular Stress Response

PubMed Central

Chaplin, Tara M.; Stroud, Laura R.

2017-01-01

Developing autonomy and maintaining relatedness within the parent–adolescent relationship marks a realignment process that shifts adolescents’ decision making and regulation from parents to youth. This process may be stressful for some adolescents, particularly those who perceive their daily lives as stressful. This study examined the associations of autonomy, relatedness and perceived stress with adolescents’ cortisol and blood pressure response to conflict in a mother–adolescent interaction task among 100 adolescents (Mage = 15.09; 68 % girls, 78 % Caucasian). Few direct associations were found, but results indicated that perceived stress moderated the effect of autonomy and relatedness such that youth who reported more perceived stress and whose mothers’ restricted their autonomy and undermined their relatedness evidenced increased cortisol and systolic blood pressure when compared to youth lower in perceived stress. The results highlight the importance of examining individual differences in the association between normative developmental transitions and adolescents’ neurobiological response to stress. PMID:26199079

Patient Autonomy in Talmudic Context: The Patient's "I Must Eat" on Yom Kippur in the Light of Contemporary Bioethics.

PubMed

Berger, Zackary; Cahan, Rabbi Joshua

2016-10-01

In contemporary bioethics, the autonomy of the patient has assumed considerable importance. Progressing from a more limited notion of informed consent, shared decision making calls upon patients to voice the desires and preferences of their authentic self, engaging in choice among alternatives as a way to exercise deeply held values. One influential opinion in Jewish bioethics holds that Jewish law, in contradistinction to secular bioethics, limits the patient's exercise of autonomy only in those instances in which treatment choices are sensitive to preferences. Here, we analyze a discussion in the Mishna, a foundational text of rabbinic Judaism, regarding patient autonomy in the setting of religiously mandated fasting, and commentaries in the Babylonian and Palestinian Talmuds, finding both a more expansive notion of such autonomy and a potential metaphysical grounding for it in the importance of patient self-knowledge.

Preaching What We Practice: Teaching Ethical Decision-Making to Computer Security Professionals

NASA Astrophysics Data System (ADS)

Fleischmann, Kenneth R.

The biggest challenge facing computer security researchers and professionals is not learning how to make ethical decisions; rather it is learning how to recognize ethical decisions. All too often, technology development suffers from what Langdon Winner terms technological somnambulism - we sleepwalk through our technology design, following past precedents without a second thought, and fail to consider the perspectives of other stakeholders [1]. Computer security research and practice involves a number of opportunities for ethical decisions. For example, decisions about whether or not to automatically provide security updates involve tradeoffs related to caring versus user autonomy. Decisions about online voting include tradeoffs between convenience and security. Finally, decisions about routinely screening e-mails for spam involve tradeoffs of efficiency and privacy. It is critical that these and other decisions facing computer security researchers and professionals are confronted head on as value-laden design decisions, and that computer security researchers and professionals consider the perspectives of various stakeholders in making these decisions.

Decision-making in nursing practice: An integrative literature review.

PubMed

Nibbelink, Christine W; Brewer, Barbara B

2018-03-01

To identify and summarise factors and processes related to registered nurses' patient care decision-making in medical-surgical environments. A secondary goal of this literature review was to determine whether medical-surgical decision-making literature included factors that appeared to be similar to concepts and factors in naturalistic decision making (NDM). Decision-making in acute care nursing requires an evaluation of many complex factors. While decision-making research in acute care nursing is prevalent, errors in decision-making continue to lead to poor patient outcomes. Naturalistic decision making may provide a framework for further exploring decision-making in acute care nursing practice. A better understanding of the literature is needed to guide future research to more effectively support acute care nurse decision-making. PubMed and CINAHL databases were searched, and research meeting criteria was included. Data were identified from all included articles, and themes were developed based on these data. Key findings in this review include nursing experience and associated factors; organisation and unit culture influences on decision-making; education; understanding patient status; situation awareness; and autonomy. Acute care nurses employ a variety of decision-making factors and processes and informally identify experienced nurses to be important resources for decision-making. Incorporation of evidence into acute care nursing practice continues to be a struggle for acute care nurses. This review indicates that naturalistic decision making may be applicable to decision-making nursing research. Experienced nurses bring a broad range of previous patient encounters to their practice influencing their intuitive, unconscious processes which facilitates decision-making. Using naturalistic decision making as a conceptual framework to guide research may help with understanding how to better support less experienced nurses' decision-making for enhanced patient outcomes. © 2017 John Wiley & Sons Ltd.

Information giving and decision-making in patients with advanced cancer: a systematic review.

PubMed

Gaston, Christine M; Mitchell, Geoffrey

2005-11-01

Patients with advanced, non-curable cancer face difficult decisions on further treatment, where a small increase in survival time must be balanced against the toxicity of the treatment. If patients want to be involved in these decisions, in keeping with current notions of autonomy and empowerment, they also require to be adequately informed both on the treatments proposed and on their own disease status and prognosis. A systematic review was performed on decision-making and information provision in patients with advanced cancer. Studies of interventions to improve information giving and encourage participation in decision-making were reviewed, including both randomised controlled trials and uncontrolled studies. Almost all patients expressed a desire for full information, but only about two-thirds wished to participate actively in decision-making. Higher educational level, younger age and female sex were predictive of a desire to participate in decision-making. Active decision-making was more common in patients with certain cancers (e.g. breast) than others (e.g. prostate). A number of simple interventions including question prompt sheets, audio-taping of consultations and patient decision aids have been shown to facilitate such involvement.

Toward Optimal Decision Making among Vulnerable Patients Referred for Cardiac Surgery: A Qualitative Analysis of Patient and Provider Perspectives.

PubMed

Gainer, Ryan A; Curran, Janet; Buth, Karen J; David, Jennie G; Légaré, Jean-Francois; Hirsch, Gregory M

2017-07-01

Comprehension of risks, benefits, and alternative treatment options has been shown to be poor among patients referred for cardiac interventions. Patients' values and preferences are rarely explicitly sought. An increasing proportion of frail and older patients are undergoing complex cardiac surgical procedures with increased risk of both mortality and prolonged institutional care. We sought input from patients and caregivers to determine the optimal approach to decision making in this vulnerable patient population. Focus groups were held with both providers and former patients. Three focus groups were convened for Coronary Artery Bypass Graft (CABG), Valve, or CABG +Valve patients ≥ 70 y old (2-y post-op, ≤ 8-wk post-op, complicated post-op course) (n = 15). Three focus groups were convened for Intermediate Medical Care Unit (IMCU) nurses, Intensive Care Unit (ICU) nurses, surgeons, anesthesiologists and cardiac intensivists (n = 20). We used a semi-structured interview format to ask questions surrounding the informed consent process. Transcribed audio data was analyzed to develop consistent and comprehensive themes. We identified 5 main themes that influence the decision making process: educational barriers, educational facilitators, patient autonomy and perceived autonomy, patient and family expectations of care, and decision making advocates. All themes were influenced by time constraints experienced in the current consent process. Patient groups expressed a desire to receive information earlier in their care to allow time to identify personal values and preferences in developing plans for treatment. Both groups strongly supported a formal approach for shared decision making with a decisional coach to provide information and facilitate communication with the care team. Identifying the barriers and facilitators to patient and caretaker engagement in decision making is a key step in the development of a structured, patient-centered SDM approach. Intervention early in the decision process, the use of individualized decision aids that employ graphic risk presentations, and a dedicated decisional coach were identified by patients and providers as approaches with a high potential for success. The impact of such a formalized shared decision making process in cardiac surgery on decisional quality will need to be formally assessed. Given the trend toward older and frail patients referred for complex cardiac procedures, the need for an effective shared decision making process is compelling.

Practices and Prospects of Learner Autonomy: Teachers' Perceptions

ERIC Educational Resources Information Center

Al Asmari, AbdulRahman

2013-01-01

Language learning process works through the learners' own reflection on how they learn and it makes learners active in the sense that they learn to analyze their learning strategies. So they start making decisions, e.g., whether to improve them or not, and in which way. Generally, this trait is missing in traditional language teaching process and…

Childhood exposure to domestic violence and attitude towards wife beating in adult life: a study of men in India.

PubMed

Zhu, Ying; Dalal, Koustuv

2010-03-01

This study examined men's justification of wife beating in relation to their perceived rights and autonomy using a nationally representative sample of 18,047 men in India with childhood exposure to parental violence. Five reasons for wife beating justification, four items of men's perceived rights, and five items of household autonomy were analysed using chi2 test and logistic regression. Among 18,047 participants, 67% justified wife beating. Low education, economic stress and being unmarried were generally more associated with justifying wife beating for all five reasons. Wife's refusal of sex and husband's final say on household autonomy are risk factors. Joint autonomy on household decision making and wife's autonomy on managing her own earnings are protective factors. Perceived relationship rights and autonomy are highly predictive of wife-beating justification for the men who have been exposed to parental violence during childhood. The study has significant implications for public health planners and education strategies.

Adolescent autonomy revisited: clinicians need clearer guidance.

PubMed

Brierley, Joe; Larcher, Victor

2016-08-01

In 1996, Brazier and Bridge raised the question 'is adolescent autonomy truly dead and buried' following judicial decisions which had seemed to reverse the Gillick-inspired trend for greater child autonomy in healthcare. Subsequent decisions by the courts have reinforced the view that those below 18 years in England and Wales remain children with limited rights to refuse treatment compared with adults. This is at variance with the daily experience of those working with young people who increasingly seek to actively involve them in making freely informed decisions about their healthcare, in accordance with the principles enunciated in the UN Convention of the Rights of the Child and the UK Children Acts. We review the derivation of the law in England and Wales in this area, in the light of another recent family court judgement enforcing treatment on a 'competent' child without his or her consent and ask: 'How can the Common Law and the ethical practice of those caring for young people have diverged so far?' Either young people can decide whether to have a recommended treatment, or they cannot. Given Ian McEwan's book, the Children Act, has stimulated wider social debate in this area might this be an opportune moment to seek public policy resolution with regards to healthcare decision making by young people? We argue that events since the Gillick case have underlined the need for a comprehensive review of legal policy and practice in this area. While absolute autonomy and freedom of choice are arguably inconsistent with the protection rights that society has agreed are owed to children, healthcare practitioners need clarity over the circumstances in which society expects that autonomous choices of adolescents can be overridden. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/

Women's Autonomy and Skilled Attendance During Pregnancy and Delivery in Nepal.

PubMed

Kc, Situ; Neupane, Subas

2016-06-01

Objectives This study aims to explore the association between women's autonomy and skilled attendance during pregnancy and delivery in Nepal. Methods We adopt data from the Nepal Demographic and Health Survey (NDHS, 2011). We include only married women who gave birth in the 5 years preceding the survey (N = 4148). Women's autonomy was assessed on the basis of four indicators of decision making: healthcare, visiting friends or relatives, household purchases and spending earned money. Each indicator was dichotomized (yes/no) and then summarized into a single variable to measure overall autonomy. Next, we measured health attendance (skilled vs. unskilled) during antenatal and delivery care. The association between women's autonomy and skilled attendance was analysed using a logistic regression model. Results Most women had a medium (40 %) and high (35 %) level of overall autonomy. The proportion of women accessing skilled providers during antenatal and delivery care was 51 and 36 %. Women with autonomy in healthcare, visiting friends or relatives, making household purchases and spending money earned were associated with a higher likelihood of receiving care from skilled providers during antenatal care and delivery. An elevated probability of access to skilled attendance during antenatal (aOR 1.33; 95 % CI 1.10-1.59) and delivery care (aOR 1.38; 95 % CI 1.12-1.70) was reported among women with higher levels of overall autonomy. Conclusion Women's autonomy was significantly associated with the maternal health care utilization by skilled attendants. This study will provide insights for policy makers to develop strategies in improving maternal health.

[Refusal of care in the intensive care: how makes decision?].

PubMed

Borel, M; Veber, B; Villette-Baron, K; Hariri, S; Dureuil, B; Hervé, C

2009-11-01

Decision-making bringing to an admission or not in intensive care is complex. The aim of this study is to analyze with an ethical point of view the making decision process leading to the refusal and its consequences. It is proposed a setting in prospect through the principles of beneficence, non-maleficience, respect for autonomy, justice, and the Leonetti law. Prospective study in surgical reanimation at the University Hospital of Rouen over 9 months (November 2007-September 2008). Systematic collection for each non-admitted patient of the general characters, the methods of decision making, immediate becoming and within 48 h Constitution of two groups: patients for whom an admission in intensive care could be an unreasonable situation of obstinacy, and patients for whom an admission in reanimation would not be about unreasonable if it occurred. One hundred and fifty situations were analyzed. The potentially unreasonable character of an admission does not involve necessarily a refusal of care in intensive care. The question of the lack of place and equity in the access to the care is real but relative according to the typology of the patients. The research of the respect of the autonomy of the patient is difficult but could be facilitated. The Leonetti law does not appear to be able to be a framework with the situation of refusal of care in intensive care. It is not a question of going towards a systematic admission in intensive care of any patient proposed, but to make sure that so if there is a refusal, it is carried out according to a step ethically acceptable.

Evidence Based Medicine and Shared Decision Making: the challenge of getting both evidence and preferences into health care.

PubMed

Barratt, Alexandra

2008-12-01

Evidence Based Medicine (EBM) and Shared Medical Decision Making (SDM) are changing the nature of health care decisions. It is broadly accepted that health care decisions require the integration of research evidence and individual preferences. These approaches are justified on both efficacy grounds (that evidence based practice and Shared Decision Making should lead to better health outcomes and may lead to a more cost-effective use of health care resources) and ethical grounds (patients' autonomy should be respected in health care). However, despite endorsement by physicians and consumers of these approaches, implementation remains limited in practice, particularly outside academic and tertiary health care centres. There are practical problems of implementation, which include training, access to research, and development of and access to tools to display evidence and support decision making. There may also be philosophical difficulties, and some have even suggested that the two approaches (evidence based practice and Shared Decision Making) are fundamentally incompatible. This paper look at the achievements of EBM and SDM so far, the potential tensions between them, and how things might progress in the future.

More Than Capacity: Alternatives for Sexual Decision Making for Individuals With Dementia.

PubMed

Wilkins, James M

2015-10-01

Sexual expression can be an important aspect of well being for older adults with dementia living in nursing homes. There is a tension in the nursing home, however, between ensuring autonomy of residents for sexual expression and protecting residents from harm. To alleviate this tension, nursing homes can conduct an assessment of residents' capacity for sexual consent. This article argues that although such assessments can be useful in the initial evaluation of capacity, this is a somewhat flawed approach to sexual decision making and a finding of incapacity should not necessarily preclude sexual expression. In instances where residents are found to lack capacity but continue to express interest in sexual expression, a committee approach can be utilized where residents, the nursing home, and family members can convene to advocate for residents' autonomy, dignity, and right to sexual expression while working to minimize harm. Such advocacy decisions can be based on substituted judgment, a best interest standard, or some combination of the two. Although committee decision making for sexual expression seems intrusive, it at least allows for continued discussion of the right to sexual freedom for residents in the face of significant counterbalancing forces. © The Author 2015. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

Does autonomy for public hospitals in developing countries increase performance? Evidence-based case studies.

PubMed

De Geyndt, Willy

2017-04-01

Governments in middle and low income countries have sought ways for the past decades to make their public hospitals more performing. The objectives of this assessment are to: (a) synthesize the experience of eleven countries at granting autonomy to their public hospitals and the obstacles encountered; (b) deduce which autonomy policies have or have not been effective documenting successes and failures; and (c) propose evidence-based recommendations to policy makers. Data for five countries are derived from the author's participation in the autonomy process augmented by current updates provided by national colleagues. Data for the other six countries are derived from publications available in the literature. Policies granting autonomy to public hospitals have had limited success. In all cases Boards of Directors have been created. Governance of autonomized hospitals by Boards however is obstructed by the resistance of central level entities to have their authority diminished. The Ministry of Finance tends to maintain control over revenues and expenditures. The Public Service Commission resists abdicating its role to hire, promote, transfer and dismiss government employees. The Ministry of Health attempts to keep its authority to appoint hospital staff, procure medical supplies and equipment; it may do so directly or indirectly by selecting and appointing Board members. Management information systems continue to collect activity measures to be aggregated at the national level for statistical purposes and do not provide financial and clinical data useful for decision making by the Boards and by senior management. Decentralizing decision making to the operational level has had limited success. Stakeholders at the central level devise strategies to maintain their power. Two main obstacles are delegating authority over human resources and finances that are sine qua non conditions for governing and increasing the performance of public hospitals. Copyright © 2017 Elsevier Ltd. All rights reserved.

Everyday decision-making in dementia: findings from a longitudinal interview study of people with dementia and family carers.

PubMed

Samsi, Kritika; Manthorpe, Jill

2013-06-01

Exercising choice and control over decisions is central to quality of life. The Mental Capacity Act 2005 (England and Wales) provides a legal framework to safeguard the rights of people with dementia to make their own decisions for as long as possible. The impact of this on long-term planning has been investigated; everyday decision-making in people's own homes remains unexplored. Using a phenomenological approach, we interviewed 12 dyads (one person with dementia + one carer) four times over one year to ascertain experience of decision-making, how decisions were negotiated, and how dynamics changed. Qualitative interviews were conducted in people's own homes, and thematic analysis was applied to transcripts. Respecting autonomy, decision-specificity and best interests underlay most everyday decisions in this sample. Over time, dyads transitioned from supported decision-making, where person with dementia and carer made decisions together, to substituted decision-making, where carers took over much decision-making. Points along this continuum represented carers' active involvement in retaining their relative's engagement through providing cues, reducing options, using retrospective information, and using the best interests principle. Long-term spouse carers seemed most equipped to make substitute decisions for their spouses; adult children and friend carers struggled with this. Carers may gradually take on decision-making for people with dementia. This can bring with it added stresses, such as determining their relative's decision-making capacity and weighing up what is in their best interests. Practitioners and support services should provide timely advice to carers and people with dementia around everyday decision-making, and be mindful how abilities may change.

Medical treatment of dementia patients at the end of life: can the law accommodate the personal identity and welfare problems?

PubMed

Lewis, Penney

2006-09-01

This article considers whether two significant philosophical objections to autonomy-based legal approaches to decision-making for incompetent individuals could be accommodated by the law. These philosophical objections are known as the personal identity and welfare problems. The article first sets out the autonomy-based approaches and their objections. Next, the present legal position is briefly canvassed in a comparative vein. Finally, the article suggests how the personal identity and welfare problems might be accommodated were legislators minded to do so, by proposing specific statutory amendments to the recent English legislation on advance decisions and evaluating their viability, particularly in light of the European Convention on Human Rights.

Pharmacy ownership in Canada: implications for the authority and autonomy of community pharmacy managers.

PubMed

Dobson, Roy Thomas; Perepelkin, Jason

2011-12-01

In recent years, the number of independently owned pharmacies has declined even as the total number of pharmacies in Canada has increased. With increasing corporate ownership, there is concern that this trend will adversely affect the profession's ability to influence pharmacy practice and practice change. To examine the relationship between ownership type and community pharmacy managers in terms of professional and employer authority, managerial autonomy, decision making, and amount of control. This study consisted of a cross-sectional survey of community pharmacy managers in Canada by means of a self-administered postal questionnaire sent to a stratified sample of community pharmacies. Statistical analysis consisted of exploratory factor analysis with reliability testing on identified constructs. Frequencies, 1-way analyses of variance, Scheffe post hoc tests, and general linear modeling were used to determine significant differences among groups based on ownership type. In total, 646 of 1961 questionnaires from pharmacy managers were completed and returned (response rate 32.9%). Respondents rated their authority similarly across ownership types. Autonomy, decision-making capabilities, and control needed to carry out the professional role appear most limited among corporate respondents and, to a lesser extent, franchise managers. Pharmacy managers currently perceive a high level of authority; but with limited autonomy among corporate managers, it is unclear whether this authority is sufficient to prevent the subordination of both patient and professional interests to financial interests. Copyright © 2011 Elsevier Inc. All rights reserved.

Modeling Common-Sense Decisions

NASA Astrophysics Data System (ADS)

Zak, Michail

This paper presents a methodology for efficient synthesis of dynamical model simulating a common-sense decision making process. The approach is based upon the extension of the physics' First Principles that includes behavior of living systems. The new architecture consists of motor dynamics simulating actual behavior of the object, and mental dynamics representing evolution of the corresponding knowledge-base and incorporating it in the form of information flows into the motor dynamics. The autonomy of the decision making process is achieved by a feedback from mental to motor dynamics. This feedback replaces unavailable external information by an internal knowledgebase stored in the mental model in the form of probability distributions.

Physicians’ Perceptions of Autonomy across Practice Types: Is Autonomy in Solo Practice a Myth?

PubMed Central

Lin, Katherine Y.

2013-01-01

Physicians in the United States are now less likely to practice in smaller, more traditional, solo practices, and more likely to practice in larger group practices. Though older theory predicts conflict between bureaucracy and professional autonomy, studies have shown that professions in general, and physicians in particular, have adapted to organizational constraints. However, much work remains in clarifying the nature of this relationship and how exactly physicians have adapted to various organizational settings. To this end, the present study examines physicians’ autonomy experiences in different decision types between organization sizes. Specifically, I ask: In what kinds of decisions do doctors perceive autonomous control? How does this vary by organizational size? Using stacked “spell” data constructed from the Community Tracking Study (CTS) Physician Survey (1996–2005) (n=16,519) I examine how physicians’ perceptions of autonomy vary between solo/two physician practices, small group practices with three to ten physicians, and large practices with ten or more physicians, in two kinds of decisions: logistic-based and knowledge-based decisions. Capitalizing on the longitudinal nature of the data I estimate how changes in practice size are associated with perceptions of autonomy, accounting for previous reports of autonomy. I also test whether managed care involvement, practice ownership, and salaried employment help explain part of this relationship. I find that while physicians practicing in larger group practices reported lower levels of autonomy in logistic-based decisions, physicians in solo/two physician practices reported lower levels of autonomy in knowledge-based decisions. Managed care involvement and ownership explain some, but not all, of the associations. These findings suggest that professional adaptation to various organizational settings can lead to varying levels of perceived autonomy across different kinds of decisions. PMID:24444835

Physicians' perceptions of autonomy across practice types: Is autonomy in solo practice a myth?

PubMed

Lin, Katherine Y

2014-01-01

Physicians in the United States are now less likely to practice in smaller, more traditional, solo practices, and more likely to practice in larger group practices. Though older theory predicts conflict between bureaucracy and professional autonomy, studies have shown that professions in general, and physicians in particular, have adapted to organizational constraints. However, much work remains in clarifying the nature of this relationship and how exactly physicians have adapted to various organizational settings. To this end, the present study examines physicians' autonomy experiences in different decision types between organization sizes. Specifically, I ask: In what kinds of decisions do doctors perceive autonomous control? How does this vary by organizational size? Using stacked "spell" data constructed from the Community Tracking Study (CTS) Physician Survey (1996-2005) (n = 16,519) I examine how physicians' perceptions of autonomy vary between solo/two physician practices, small group practices with three to ten physicians, and large practices with ten or more physicians, in two kinds of decisions: logistic-based and knowledge-based decisions. Capitalizing on the longitudinal nature of the data I estimate how changes in practice size are associated with perceptions of autonomy, accounting for previous reports of autonomy. I also test whether managed care involvement, practice ownership, and salaried employment help explain part of this relationship. I find that while physicians practicing in larger group practices reported lower levels of autonomy in logistic-based decisions, physicians in solo/two physician practices reported lower levels of autonomy in knowledge-based decisions. Managed care involvement and ownership explain some, but not all, of the associations. These findings suggest that professional adaptation to various organizational settings can lead to varying levels of perceived autonomy across different kinds of decisions. Copyright © 2013 Elsevier Ltd. All rights reserved.

The Assisted Decision-Making (Capacity) Bill 2013: content, commentary, controversy.

PubMed

Kelly, B D

2015-03-01

Ireland's Assisted Decision-Making (Capacity) Bill (2013) aims to reform the law relating to persons who require assistance exercising their decision-making capacity. When finalised, the Bill will replace Ireland's outdated Ward of Court system which has an all-or-nothing approach to capacity; does not adequately define capacity; is poorly responsive to change; makes unwieldy provision for appointing decision-makers; and has insufficient provision for review. To explore the content and implications of the Assisted Decision-Making (Capacity) Bill. Review of the content of the Assisted Decision-Making (Capacity) Bill and related literature. The new Bill includes a presumption of capacity and defines lack of capacity. All interventions must minimise restriction of rights and freedom, and have due regard for "dignity, bodily integrity, privacy and autonomy". The Bill proposes legal frameworks for "assisted decision-making" (where an individual voluntarily appoints someone to assist with specific decisions relating to personal welfare or property and affairs, by, among other measures, assisting the individual to communicate his or her "will and preferences"); "co-decision-making" (where the Circuit Court declares the individual's capacity is reduced but he or she can make specific decisions with a co-decision-maker to share authority); "decision-making representatives" (substitute decision-making); "enduring power of attorney"; and "informal decision-making on personal welfare matters" (without apparent oversight). These measures, if implemented, will shift Ireland's capacity laws away from an approach based on "best interests" to one based on "will and preferences", and increase compliance with the United Nations' Convention on the Rights of Persons with Disabilities.

Adult Education in Modern Greece.

ERIC Educational Resources Information Center

Boucouvalas, Marcie

1982-01-01

Greece's adult education enterprise is well-organized, well-thought-out, and well-grounded. A sound philosophical, theoretical, and conceptual foundation supports its operational components. A unique feature is its blend of centralization and decentralization: centralized policy and guidance and decentralized decision making and autonomy over…

The Influence of Leadership Style on Teacher Job Satisfaction.

ERIC Educational Resources Information Center

Bogler, Ronit

2001-01-01

Examines principals' leadership style (transformational or transactional), decision-making process (autocratic or participative), and teachers' occupation perceptions on teacher job satisfaction in Israel. Finds that teacher perceptions of occupational prestige, self-esteem, autonomy at work, and professional self-development contribute the most…

Complementary and Alternative Therapies in ALS

PubMed Central

Bedlack, Richard S.; Joyce, Nanette; Carter, Gregory T.; Pagononi, Sabrina; Karam, Chafic

2015-01-01

Synopsis Given the severity of their illness and lack of effective disease modifying agents, it is not surprising that most patients with ALS consider trying complementary and alternative therapies. Some of the most commonly considered alternative therapies include special diets, nutritional supplements, cannabis, acupuncture, chelation and energy healing. This chapter reviews these in detail. We also describe 3 models by which physicians may frame discussions about alternative therapies: paternalism, autonomy and shared decision making. Finally, we review a program called ALSUntangled which using shared shared decision making to review alternative therapies for ALS. PMID:26515629

Autonomy and infant feeding decision-making among teenage mothers in a rural and urban setting in KwaZulu-Natal, South Africa.

PubMed

Jama, Ngcwalisa Amanda; Wilford, Aurene; Haskins, Lyn; Coutsoudis, Anna; Spies, Lenore; Horwood, Christiane

2018-02-17

The nutritional status of infants born to teenage mothers can be sub-optimal compared to those born to older mothers. One contributing factor is inappropriate feeding practices adopted by teenage mothers. Little is known about how infant feeding decisions are made among teenage mothers, particularly in under resourced settings. In this study we prospectively explored autonomy and infant feeding decision-making among teenage mothers in a rural and urban setting in KwaZulu-Natal, South Africa. This study adopted a qualitative longitudinal design. Thirty pregnant participants were recruited to the study cohort, from the catchment area of two hospitals (one urban and one rural). Participants were purposively selected to include teenagers, HIV positive, and working pregnant women. We report findings from ten teenage mothers, aged between 15 and 19 years, who participated in the larger cohort (n = 5 rural; n = 5 urban). Monthly in-depth interviews were conducted with participating mothers for 6 months starting 2 weeks after delivery. All interviews were conducted in the local language, transcribed verbatim and translated into English. Data was coded using NVivo v10 and framework analysis was used. Findings from this study showed that teenage mothers had knowledge about recommended feeding practices. However, our findings suggest that these mothers were not involved in infant feeding decisions once they were at home, because infant feeding decision-making was a role largely assumed by older mothers in the family. Further, the age of the mother and financial dependency diminished her autonomy and ability to influence feeding practices or challenge incorrect advice given at home. Most feeding advice shared by family members was inappropriate, leading to poor infant feeding practices among teenage mothers. Returning to school and fear of breastfeeding in public were also barriers to exclusive breastfeeding. Teenage mothers had a limited role in the infant feeding decision-making process. Health workers have an important role to play in ensuring that knowledge about infant feeding is shared with the mother's family where infant feeding choices are made. This will improve support for teenage mothers, and may also positively impact on the nutritional status of children.

[From the Principle of Beneficence to the Principle of Autonomy. Assessment of Patients' Mental Competency in the General Hospital].

PubMed

Diana, Restrepo B; Carlos, Cardeño C; Marle, Duque G; Santiago, Jaramillo

2012-06-01

Refusing a medical procedure is a valid way of exercising every patient's right to autonomy. From the legal point of view, autonomy is based on the right to privacy. In recent decades the legal right to self-determination has gradually expanded and today patients in full possession of their mental faculties, have the moral and legal right to make their own decisions and these decisions take precedence over physician and family. Often liaison psychiatrists are called in to assess the mental competence of patients in the general hospital. To determine the psychiatrist's role in evaluating these patients. The assessment of a patient's ability to decide and self-determine is a common clinical problem in general hospitals. Evaluation of these patients requires a proper understanding of the philosophical, ethical, and legal issues that guide the appropriate treatment of these complex clinical problems. Copyright © 2012 Asociación Colombiana de Psiquiatría. Publicado por Elsevier España. All rights reserved.

The moral agency of institutions: effectively using expert nurses to support patient autonomy.

PubMed

Charles, Sonya

2017-08-01

Patient autonomy-with an emphasis on informed consent and the right to refuse treatment-is a cornerstone of modern bioethics. Within discussions about patient autonomy, feminist bioethicists have argued for a relational approach to autonomy. Under a relational framework, we must look beyond the individual moment of choice to include the role relationships and specific contexts can play in supporting or undermining autonomy. Given the day-to-day interactions they have with patients, nurses play a significant role in helping patients understand the nature of their illnesses and make truly informed decisions. However, the skills of expert nurses also support patient autonomy in more subtle ways. Specifically, nurses develop skills of attunement that help them to find subtle ways to support patient autonomy. However, in order to effectively do this, nurses need institutions that support their professional autonomy. In this paper, I look at the ways nurses have been inhibited in their professional autonomy both as a profession and as individual practitioners. I argue that turning our attention to institutions and the role they play in supporting or undermining nurses' autonomy can help promote nurses' professional autonomy and thereby enhance patient autonomy. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/.

Do we need a threshold conception of competence?

PubMed

den Hartogh, Govert

2016-03-01

On the standard view we assess a person's competence by considering her relevant abilities without reference to the actual decision she is about to make. If she is deemed to satisfy certain threshold conditions of competence, it is still an open question whether her decision could ever be overruled on account of its harmful consequences for her ('hard paternalism'). In practice, however, one normally uses a variable, risk dependent conception of competence, which really means that in considering whether or not to respect a person's decision-making authority we weigh her decision on several relevant dimensions at the same time: its harmful consequences, its importance in terms of the person's own relevant values, the infringement of her autonomy involved in overruling it, and her decision-making abilities. I argue that we should openly recognize the multi-dimensional nature of this judgment. This implies rejecting both the threshold conception of competence and the categorical distinction between hard and soft paternalism.

"Saying no is no easy matter" A qualitative study of competing concerns in rationing decisions in general practice

PubMed Central

Carlsen, Benedicte; Norheim, Ole Frithjof

2005-01-01

Background The general practitioner in Norway is expected to ensure equity and effectiveness through fair rationing. At the same time, due to recent reforms of the Norwegian health care sector, both the role of economic incentives and patient autonomy have been strengthened. Studies indicate that modern general practitioners, both in Norway and in other countries are uncomfortable with the gatekeeper role, but there is little knowledge about how general practitioners experience rationing in practice. Methods Through focus group interviews with Norwegian general practitioners, we explore physicians' attitudes toward factors of influence on medical decision making and how rationing dilemmas are experienced in everyday practice. Results Four major concerns appeared in the group discussions: The obligation to ration health care, professional autonomy, patient autonomy, and competition. A central finding was that the physicians find rationing difficult because saying no in face to face relations often is felt uncomfortable and in conflict with other important objectives for the general practitioner. Conclusion It is important to understand the association between using economic incentives in the management of health care, increasing patient autonomy, and the willingness among physicians to contribute to efficient, fair and legitimate resource allocation. PMID:16281967

The role of gender inequities in women’s access to reproductive health care: a population-level study of Namibia, Kenya, Nepal, and India

PubMed Central

Namasivayam, Amrita; Osuorah, Donatus C; Syed, Rahman; Antai, Diddy

2012-01-01

Background: The role of gender inequities in explaining women’s access to reproductive health care was examined in four countries (two sub-Saharan African and two South Asian countries). The extent of gender inequities varies across and within countries, and is rooted in the different cultural practices and gender norms within these different countries, and differences in the status and autonomy of women. Methods: Demographic and Health Survey data from women aged 15–49 years within these countries were analyzed with multivariate logistic regression analysis to examine the role of multidimensional characteristics of gender inequities, operationalized as access to skilled antenatal care, tetanus toxoid injection during pregnancy, and access to skilled antenatal care. Results: Significant associations were found between several dimensions of gender inequities (with the exception of decision-making autonomy) and reported use of maternal reproductive health care services. Several pathways of influence between the outcome and exposure variables were also identified. Conclusion: Dimensions of gender inequities (with the exception of decision-making autonomy) differentially influenced woman’s use of reproductive health care services, thus highlighting the urgent need for concerted and sustained efforts to change these harmful traditional values if several of these countries are to meet Millennium Development Goal-5. PMID:22927766

Costs can influence family planning decisions.

PubMed

Barnett, B

1998-01-01

This article discusses research in Cebu, Philippines, that examines the relationship between costs and income and family planning (FP) decisions. Clients weigh the costs and benefits of obtaining FP services. Costs may include the time to purchase supplies, travel to clinics, child care, and lost work time. Women should consider the costs of having more children. Family Health International's Women's Studies Project explored couple's FP decision-making. In Cebu, women play a decisive role in household expenditure decisions. 64% of women made sole decisions about children's shoes and clothing. 43% made decisions about taking children to the doctor. Women consulted husbands for larger expenditures, such as land purchases, hiring household help, and travel outside Cebu. If conflicts arose, 82% reported a mutual final decision, while 12% accepted the husband's judgment. Only 12% of women made sole decisions about FP. About 20% of the sample of women discussed FP with adult females. 25% of the women who consulted their husbands about FP made the final decision when there was conflict. Only 7% reported that the husband's decision was final. A recent follow-up study to a 1983 study finds that price is only one among many factors that affect contraceptive decision-making. Rural women in Cebu reported that the time needed to obtain contraceptives was an important factor in determining their use. A study of 64 women in rural southern India finds that contraceptive prevalence was influenced by women's autonomy rather than income. Women's and children's ages, family size, and birth order affected women's autonomy and access to money. In another related study, Pakistani women had lower fertility rates when wives' unearned income was high. An increase by 25% in unearned income among rural women decreased fertility by one child.

Power to Do...What? Department Heads' Decision Autonomy and Strategic Priorities

ERIC Educational Resources Information Center

Bozeman, Barry; Fay, Daniel; Gaughan, Monica

2013-01-01

Using questionnaire data from the 2010 Survey of Academic Chairs, the study focuses on decision autonomy, a component of the power wielded by science, technology, engineering and mathematics (STEM) department chairs in U.S. research extensive universities. A "power index" is developed to measure chairs' decision autonomy, specifically their…

Teacher Burnout.

ERIC Educational Resources Information Center

USA Today, 1985

1985-01-01

Teacher burnout is characterized by three factors: emotional exhaustion and fatigue; negative, cynical attitudes towards students; and the loss of feelings of accomplishment on the job. Important predictors of burnout include a lack of participation in decision-making, inappropriate job expectations, a lack of teacher autonomy, and role conflict.…

Involvement of adolescents in decision making for heart transplants.

PubMed

Sinclair, Sarah J

2009-01-01

Every year, hundreds of children and adolescents are faced with the need for heart transplantation to survive end-stage cardiac disease. This experience extends far beyond the surgical intervention, for it begins with a waiting period that may involve invasive and distressing interventions, and proceeds through a lifetime of lifestyle changes and complicated ongoing medical management. Adolescents may wish to forgo heart transplantation, even at the expense of their own lives. Such refusals leave patients, parents, and healthcare professionals grappling with complex ethical issues. It is incumbent upon professionals to allow adolescents a role in making this important decision; this requires that nurses understand ethical concepts including autonomy, competence, and assent. Because autonomy develops over time, an evaluation of the adolescent's maturity and competence is necessary. By incorporating the concepts of child development and measures of competence developed to govern pediatric involvement in research, a structured and ethically sound method for involving adolescents in this process can be put into practice.

"Nudge" in the clinical consultation--an acceptable form of medical paternalism?

PubMed

Aggarwal, Ajay; Davies, Joanna; Sullivan, Richard

2014-04-17

Libertarian paternalism is a concept derived from cognitive psychology and behavioural science. It is behind policies that frame information in such a way as to encourage individuals to make choices which are in their best interests, while maintaining their freedom of choice. Clinicians may view their clinical consultations as far removed from the realms of cognitive psychology but on closer examination there are a number of striking similarities. Evidence has shown that decision making is prone to bias and not necessarily rational or logical, particularly during ill health. Clinicians will usually have an opinion about what course of action represents the patient's best interests and thus may "frame" information in a way which "nudges" patients into making choices which are considered likely to maximise their welfare. This may be viewed as interfering with patient autonomy and constitute medical paternalism and appear in direct opposition to the tenets of modern practice. However, we argue that clinicians have a responsibility to try and correct "reasoning failure" in patients. Some compromise between patient autonomy and medical paternalism is justified on these grounds and transparency of how these techniques may be used should be promoted. Overall the extremes of autonomy and paternalism are not compatible in a responsive, responsible and moral health care environment, and thus some compromise of these values is unavoidable. Nudge techniques are widely used in policy making and we demonstrate how they can be applied in shared medical decision making. Whether or not this is ethically sound is a matter of continued debate but health care professionals cannot avoid the fact they are likely to be using nudge within clinical consultations. Acknowledgment of this will lead to greater self-awareness, reflection and provide further avenues for debate on the art and science of clinical communication.

Effects of women's autonomy on maternal healthcare utilization in Bangladesh: Evidence from a national survey.

PubMed

Haider, Mohammad Rifat; Qureshi, Zaina P; Khan, M Mahmud

2017-12-01

This study aims to construct an index of women's autonomy to analyze its effect on maternal healthcare utilization in Bangladesh. Empirical modeling of the study used instrumental variable (IV) approach to correct for possible endogeneity of women's autonomy variable. Data from the Bangladesh Demographic and Health Survey (BDHS) 2011 was used for the study. Women's autonomy variable was obtained through factor analysis of variables related to autonomy in decision making regarding healthcare, financial autonomy and freedom of movement. Conditional mixed process (CMP) models were fitted for three maternal healthcare indicators: at least four antenatal care (ANC) by trained personnel, institutional delivery and postnatal care (PNC) by trained personnel. Study sample consisted of 8753 women with 5.5 mean years of schooling. Women with no formal education, of Islamic faith, from poorest wealth quintile, residing in rural areas and with low autonomy used the maternal healthcare least. Marginal effect shows that if women's autonomy score is increased by one unit, probability of maternal healthcare utilization will increase by 0.14 for ANC, 0.14 for institutional delivery, and 0.13 for PNC. Women's autonomy is an important driver of maternal healthcare utilization in Bangladesh. Results suggest that women participating in social and economic activities enhances their autonomy. Other factors affecting women's autonomy are female literacy, educational attainment and households' economic status. Copyright © 2017 Elsevier B.V. All rights reserved.

[Hospital self-management policy in Chile: perceptions of decision-makers].

PubMed

Méndez, Claudio A; Miranda, Christian; Torres, M Cristina; Márquez, Myriam

2013-01-01

To learn the perceptions of decision-makers concerning the imple-men-t-ation stage of a hospital self-management policy in two highly complex hospitals in southern Chile. A descriptive, exploratory, qualitative study based on semi-structured in-depth interviews of decision-makers at the Regional Hospital of Valdivia and the Hospital San José de Osorno from August 2010 to December 2011. A convenience sample of 26 decision-makers was selected. The 26 interviews were recorded and transcribed verbatim. The information was analyzed using inductive content analysis. The interviewees consider the concept of self-management to be determined by autonomy in decision-making about resource allocation and the financing of health service delivery in the hospitals. They also stated that human resources and financing policies should be included to improve the implementation stage. They related weaknesses with the lack of organizational capabilities and managerial skills in the health teams implementing the changes. Conceptually, the hospital self-management policy is based on financial autonomy, and implementation is affected by persistent capacity gaps in policy design.

Ethical decision-making near the end of life.

PubMed

Finucane, T E; Harper, M

1996-05-01

For ethical decision-making near the end of life, autonomy is the moral North Star. At the same time, for some treatments, the burdens so clearly outweigh benefits that physicians may make a judgment not to offer the treatment. This is often clearer in surgery. A person with colon cancer and metastases may not insist on resection of the metastases. For some reason, some treatments have escaped these logical constraints. Attempted resuscitation of a dying patient is a good example. The circumstances in which a physician may make choices on behalf of a competent, terminally-ill patient without consent, and even without notification, are hotly debated, but data suggest that physicians do so frequently. Patients who lack capacity present even more difficult challenges. Advance directives, when available, can be extremely helpful, but even with them difficult problems can remain. If advance directives have not been established, family and close friends are an obvious source of guidance. Their legal role varies in different jurisdictions; in practice, they are crucial in bedside decision-making. Guardianship and alternatives to it remain a poor last resort. Euthanasia is a very difficult problem. We believe it is semantically misleading to lump under the term "passive euthanasia" those circumstances where potentially life-sustaining treatment is withheld or withdrawn. The tension between patient autonomy and medical common sense remains unresolved within the "futility" controversy. The authors believe it serves no purpose to discuss carefully with dying patients propositions that are nonsense. At the same time, physicians must not confuse decisions about quality of life with judgements about treatment effectiveness. We believe that what many, although not all, dying patients want are physicians with intelligent compassion who can take care of them through the dying process.

Person autonomy and voluntariness as important factors in motivation, decision making, and astronaut safety: First results from the Mars500 LODGEAD study

NASA Astrophysics Data System (ADS)

Baarsen, Bernadette van

2013-06-01

The present study aims to explore the influence of person autonomy and voluntariness on the level and orientation of motivation and decision making of crew members who live and work in extreme isolated conditions such as during long-term space flights. Motivation has been related to positive behavioural (e.g., goal-orientation), cognitive (e.g., attention), and psychological (e.g., well-being) outcomes and is likely to be relevant for safe and favourable extraterrestrial life- and working-conditions. The study has been carried out within the scope of the Mars500 study which includes a Mars mission simulation of 105 (pilot study) and 520 (main study) days and involves a multi-national crew of 6 men who lived and worked in hermetically sealed modules in the IBMP facilities in Moscow. Data have been collected by the use of questionnaires that evaluate the Mars experiment in terms of, e.g. information received (e.g., "My experiences here are in line with what I was told during the selection and instruction procedure"), perceived social pressure (e.g., "I don't feel free to make my own decisions"), and personal challenge (e.g., "I think that joining the first Mars mission would be a major challenge for me"). It is hypothesised that stronger (1) perceived information consistency, (2) personal expectation consistency, (3) perceived voluntariness, and (4) experienced freedom of choice will be indicative of higher motivation levels. The results will be interpreted in the light of communication, decision making processes, and mission safety. Also, moral expectations and ethical considerations regarding future participation in long duration Human missions such as Mars will be discussed. We will make use of descriptive, longitudinal pattern analyses and correlations.

Applying Self-Determination Theory to Adolescent Sexual-Risk Behavior and Knowledge: A Structural Equation Model [Formula: see text].

PubMed

Riley, Bettina H; McDermott, Ryon C

2018-05-01

National health priorities identify adolescent sexual-risk behavior outcomes as research and intervention targets for mental health. Reduce sexual-risk behavioral outcomes by applying self-determination theory to focus on decision-making autonomy. This study examined late adolescents' recollections of parental autonomy support/sexual-risk communication experiences and autonomy motivation as predictors of sexual-risk behaviors/knowledge. A convenience sample ( N = 249) of 19- and 20-year-old university students completed self-report questionnaires. Structural equation modeling with latent variables examined direct/indirect effects in the hypothesized model. Parents contributed uniquely through sexual-risk communication and/or autonomy support to late adolescents' autonomous motivation. The final model evidenced acceptable fit and explained 12% of the variation in adolescent sexual-risk behavior, 7% in adolescent autonomous motivation, and 2% in adolescent sexual-risk knowledge. Psychiatric mental health nurses should conduct further research and design interventions promoting parent autonomy support and adolescent autonomous motivation to reduce sexual risk-behavior and increase sexual-risk knowledge.

The secret art of managing healthcare expenses: investigating implicit rationing and autonomy in public healthcare systems.

PubMed

Lauridsen, S M R; Norup, M S; Rossel, P J H

2007-12-01

Rationing healthcare is a difficult task, which includes preventing patients from accessing potentially beneficial treatments. Proponents of implicit rationing argue that politicians cannot resist pressure from strong patient groups for treatments and conclude that physicians should ration without informing patients or the public. The authors subdivide this specific programme of implicit rationing, or "hidden rationing", into local hidden rationing, unsophisticated global hidden rationing and sophisticated global hidden rationing. They evaluate the appropriateness of these methods of rationing from the perspectives of individual and political autonomy and conclude that local hidden rationing and unsophisticated global hidden rationing clearly violate patients' individual autonomy, that is, their right to participate in medical decision-making. While sophisticated global hidden rationing avoids this charge, the authors point out that it nonetheless violates the political autonomy of patients, that is, their right to engage in public affairs as citizens. A defence of any of the forms of hidden rationing is therefore considered to be incompatible with a defence of autonomy.

Finding Autonomy in Birth*

PubMed Central

Kukla, Rebecca; Kuppermann, Miriam; Little, Margaret; Lyerly, Anne Drapkin; Mitchell, Lisa M; Armstrong, Elizabeth M.; Harris, Lisa

2009-01-01

Over the last several years, as cesarean deliveries have grown increasingly common, there has been a great deal of public and professional interest in the phenomenon of women ‘choosing’ to deliver by cesarean section in the absence of any specific medical indication. The issue has sparked intense conversation, as it raises questions about the nature of autonomy in birth. Whereas mainstream bioethical discourse is used to associating autonomy with having a large array of choices, this conception of autonomy does not seem adequate to capture concerns and intuitions that have a strong grip outside of this discourse. An empirical and conceptual exploration of how delivery decisions ought to be negotiated must be guided by a rich understanding of women’s agency and its placement within a complicated set of cultural meanings and pressures surrounding birth. It is too early to be ‘for’ or ‘against’ women’s access to cesarean delivery in the absence of traditional medical indications - and indeed, a simple pro- or con- position is never going to do justice to the subtlety of the issue. The right question is not whether women ought to be allowed to choose their delivery approach, but rather, taking the value of women’s autonomy in decision-making around birth as a given, what sorts of guidelines, practices, and social conditions will best promote and protect women’s full inclusion in a safe and positive birth process. PMID:19076937

Finding autonomy in birth.

PubMed

Kukla, Rebecca; Kuppermann, Miriam; Little, Margaret; Lyerly, Anne Drapkin; Mitchell, Lisa M; Armstrong, Elizabeth M; Harris, Lisa

2009-01-01

Over the last several years, as cesarean deliveries have grown increasingly common, there has been a great deal of public and professional interest in the phenomenon of women 'choosing' to deliver by cesarean section in the absence of any specific medical indication. The issue has sparked intense conversation, as it raises questions about the nature of autonomy in birth. Whereas mainstream bioethical discourse is used to associating autonomy with having a large array of choices, this conception of autonomy does not seem adequate to capture concerns and intuitions that have a strong grip outside this discourse. An empirical and conceptual exploration of how delivery decisions ought to be negotiated must be guided by a rich understanding of women's agency and its placement within a complicated set of cultural meanings and pressures surrounding birth. It is too early to be 'for' or 'against' women's access to cesarean delivery in the absence of traditional medical indications--and indeed, a simple pro- or con- position is never going to do justice to the subtlety of the issue. The right question is not whether women ought to be allowed to choose their delivery approach but, rather, taking the value of women's autonomy in decision-making around birth as a given, what sorts of guidelines, practices, and social conditions will best promote and protect women's full inclusion in a safe and positive birth process.

[Euthanasia and the paradoxes of autonomy].

PubMed

Siqueira-Batista, Rodrigo; Schramm, Fermin Roland

2008-01-01

The principle of respect for autonomy has proved very useful for bioethical arguments in favor of euthanasia. However unquestionable its theoretical efficacy, countless aporiae can be raised when conducting a detailed analysis of this concept, probably checkmating it. Based on such considerations, this paper investigates the principle of autonomy, starting with its origins in Greek and Christian traditions, and then charting some of its developments in Western cultures through to its modern formulation, a legacy of Immanuel Kant. The main paradoxes of this concept are then presented in the fields of philosophy, biology, psychoanalysis and politics, expounding several of the theoretical difficulties to be faced in order to make its applicability possible within the scope of decisions relating to the termination of life.

The Autonomy-Authority Duality of Shared Decision-Making in Youth Environmental Action

ERIC Educational Resources Information Center

Schusler, Tania M.; Krasny, Marianne E.; Decker, Daniel J.

2017-01-01

While environmental action is recognized as an effective approach for developing young people's capabilities as citizens and contributing to environmental improvements, little research has addressed how adults facilitate youth action projects. Environmental action involves a partnership among youth and adults characterized by shared…

Ethical frameworks for surrogates’ end-of-life planning experiences: A qualitative systematic review

PubMed Central

Kim, Hyejin; Deatrick, Janet A; Ulrich, Connie M

2016-01-01

Despite the growing body of knowledge about surrogate decision making, we know very little about the use of ethical frameworks including ethical theories, principles, and concepts to understand surrogates’ day-to-day experiences in end-of-life care planning for incapacitated adults. This systematic review of 30 qualitative research papers was conducted to identify the types of ethical frameworks used to address surrogates’ experiences in end-of-life care planning for incapacitated adults as well as the most common themes or patterns found in surrogate decision making research.. Seven papers explicitly identified ethical theories, principles, or concepts for their studies, such as autonomy, substituted judgment, and best interests. Themes identified about surrogate decision making included: responsibilities and goals, factors affecting surrogates’ decision making, and outcomes for surrogates. In fact, an overarching theme of “wanting to do the right thing” for incapacitated adults and/or themselves was prominent. Understanding the complexity of surrogates’ experiences of end-of-life care planning is beyond the scope of conventional ethical frameworks. Ethical frameworks that address individuality and contextual variations related to decision making may more appropriately guide surrogate decision making research that explores surrogates’ end-of-life care planning experiences. PMID:27005954

Cancer patients' perceptions of do not resuscitate orders.

PubMed

Olver, Ian N; Eliott, Jaklin A; Blake-Mortimer, Jane

2002-01-01

Patients' perceptions of do not resuscitate (DNR) orders and how and when to present the information were sought to aid in framing DNR policy. Semi-structured interviews of 23 patients being treated for cancer, were conducted by a clinical psychologist. The interviews were transcribed and analysed with the aid of a qualitative software package. Discourse analysis enabled hypotheses to be formed based on consistencies and variations of the language used. Most patients understood what DNR meant and preferred DNR orders to 'good palliative care' orders. They saw it as their autonomous right and responsibility to make such decisions. They would seek information on the likely medical outcomes of resuscitation but also would use non-rational criteria based on emotional and social factors to make their decisions. Family considerations suggest that personal autonomy is not the overriding basis of the decision. Patients were unsure of the best timing of a DNR discussion and were prepared to defer to doctors' intuition. Most advocated written DNR orders but few had them. Families were construed as advocates but also seen as constraining individual autonomy. When considering DNR orders, patients recognise the diversity of preferences likely to exist that belie a one policy fits all approach. Copyright 2002 John Wiley & Sons, Ltd.

Decision-making about prenatal genetic testing among pregnant Korean-American women.

PubMed

Jun, Myunghee; Thongpriwan, Vipavee; Choi, Jeeyae; Sook Choi, Kyung; Anderson, Gwen

2018-01-01

to understand the prenatal genetic testing decision-making processes among pregnant Korean-American women. a qualitative, descriptive research design. referrals and snowball sampling techniques were used to recruit 10 Korean-American women who had been recommended for amniocentesis during pregnancy in the United States (U.S.). All participants were born in Korea and had immigrated to the U.S. The number of years living in the U.S. ranged from 4 to 11 (M=5.7). various regional areas of the U.S. the researchers conducted face-to-face or phone interviews using semi-structured interview guides. The interviews were conducted in the Korean language and lasted approximately 50-100minutes. The interview guides focused on the decision-making process and experiences with prenatal genetic testing, as well as reflections on the decisions. Four core themes emerged related to the participants' decision-making processes, according to their descriptions. These themes are (1) facing the challenges of decision-making, (2) seeking support, (3) determining one's preferred role in the decision-making process, and (4) feeling uncomfortable with the degree of patient autonomy in U.S. health care. researchers concluded that many distinctive factors influence the decision-making processes used by pregnant Korean-American women. The results have the potential to improve shared decision-making practices regarding prenatal genetic testing. clinicians need to understand the sociocultural underpinnings of pregnant Korean-American immigrants regarding prenatal genetic screening and testing as an initial step to engage these patients in shared decision-making. Published by Elsevier Ltd.

Post-sterilization autonomy among young mothers in South India.

PubMed

Pallikadavath, Saseendran; Rajan, Irudaya; Singh, Abhishek; Ogollah, Reuben; Page, Samantha

2015-01-01

This study examined the post-sterilization autonomy of women in south India in the context of early sterilization and low fertility. Quantitative data were taken from the third round of the National Family Health Survey (NFHS-3) carried out in 2005-06, and qualitative data from one village each in Kerala and Tamil Nadu during 2010-11. The incident rate ratios and thematic analysis showed that among currently married women under the age of 30 years, those who had been sterilized had significantly higher autonomy in household decision-making and freedom of mobility compared with women who had never used any modern family planning method. Early age at sterilization and low fertility enables women to achieve the social status that is generally attained at later stages in the life-cycle. Policies to capitalize on women's autonomy and free time resulting from early sterilization and low fertility should be adopted in south India.

Intergenerational Perspectives on Autonomy Following a Transition to a Continuing Care Retirement Community.

PubMed

Ayalon, Liat

2016-02-01

The study evaluated the concept of autonomy from the perspective of older adults and their adult children following a transition of the older adult to a continuing care retirement community (CCRC). Overall, 70 interviews (with older adults and their adult children; 34 dyads) were analyzed, using a line-by-line open coding, followed by dyadic analysis. Autonomy was not portrayed as a uniform, homogenous construct, but rather encompassed four different domains: (a) the focus of one's attention or concerns: on others, on self, or not at all; (b) the ability to exercise decisions and make independent choices; (c) the degree of physical functioning and ability of the older adult; and (d) the financial ability of the older adult. The duality in the relationships between older adults and their adult children is discussed in relation to the give and take of autonomy that occur following a transition to a CCRC. © The Author(s) 2015.

Maternal autonomy and child health care utilization in India: results from the National Family Health Survey.

PubMed

Malhotra, Chetna; Malhotra, Rahul; Østbye, Truls; Subramanian, S V

2014-07-01

The objective of this study was to examine the association of maternal autonomy with preventive and curative child health care utilization in India. Data from the National Family Health Survey 2005-2006 were used to ascertain association of maternal autonomy (in 3 dimensions: decision making, access to financial resources, freedom of movement) with child's primary immunization status (indicative of preventive health care use) and treatment seeking for child's acute respiratory infection (indicative of curative health care use). Low maternal freedom of movement was associated with higher odds of incomplete primary immunization of the child and for not seeking treatment for the child's acute respiratory infection. Low maternal financial access was associated with increased odds for incomplete primary immunization of the child. The findings show that improvement in autonomy of Indian mothers, especially their freedom of movement, may help improve utilization of health care for their children. © 2012 APJPH.

Ageism and Autonomy in Health Care: Explorations Through a Relational Lens.

PubMed

Pritchard-Jones, Laura

2017-03-01

Ageism within the context of care has attracted increasing attention in recent years. Similarly, autonomy has developed into a prominent concept within health care law and ethics. This paper explores the way that ageism, understood as a set of negative attitudes about old age or older people, may impact on an older person's ability to make maximally autonomous decisions within health care. In particular, by appealing to feminist constructions of autonomy as relational, I will argue that the key to establishing this link is the concept of self-relations such as self-trust, self-worth and self-esteem. This paper aims to demonstrate how these may be impacted by the internalisation of negative attitudes associated with old age and care. In light of this, any legal or policy response must be sensitive to and flexible enough to deal with the way in which ageism impacts autonomy.

Patient Autonomy in a High-Tech Care Context - A Theoretical Framework.

PubMed

Lindberg, Catharina; Fagerström, Cecilia; Willman, Ania

2018-06-12

To synthesise and interpret previous findings with the aim of developing a theoretical framework for patient autonomy in a high-tech care context. Putting the somewhat abstract concept of patient autonomy into practice can prove difficult since when it is highlighted in healthcare literature the patient perspective is often invisible. Autonomy presumes that a person has experience, education, self-discipline and decision-making capacity. Reference to autonomy in relation to patients in high-tech care environments could therefore be considered paradoxical, as in most cases these persons are vulnerable, with impaired physical and/or metacognitive capacity, thus making extended knowledge of patient autonomy for these persons even more important. Theory development. The basic approaches in theory development by Walker and Avant were used to create a theoretical framework through an amalgamation of the results from three qualitative studies conducted previously by the same research group. A theoretical framework - the control-partnership-transition framework - was delineated disclosing different parts co-creating the prerequisites for patient autonomy in high-tech care environments. Assumptions and propositional statements that guide theory development were also outlined, as were guiding principles for use in day-to-day nursing care. Four strategies used by patients were revealed: the strategy of control, the strategy of partnership, the strategy of trust, and the strategy of transition. An extended knowledge base, founded on theoretical reasoning about patient autonomy, could facilitate nursing care that would allow people to remain/become autonomous in the role of patient in high-tech care environments. The control-partnership-transition framework would be of help in supporting and defending patient autonomy when caring for individual patients, as it provides an understanding of the strategies employed by patients to achieve autonomy in high-tech care contexts. The guiding principles for patient autonomy presented could be used in nursing guidelines. This article is protected by copyright. All rights reserved. This article is protected by copyright. All rights reserved.

Ideals of patient autonomy in clinical decision making: a study on the development of a scale to assess patients' and physicians' views.

PubMed

Stiggelbout, A M; Molewijk, A C; Otten, W; Timmermans, D R M; van Bockel, J H; Kievit, J

2004-06-01

Evidence based patient choice seems based on a strong liberal individualist interpretation of patient autonomy; however, not all patients are in favour of such an interpretation. The authors wished to assess whether ideals of autonomy in clinical practice are more in accordance with alternative concepts of autonomy from the ethics literature. This paper describes the development of a questionnaire to assess such concepts of autonomy. A questionnaire, based on six moral concepts from the ethics literature, was sent to aneurysm patients and their surgeons. The structure of the questionnaire was assessed by factor analysis, and item reduction was based on reliability. Ninety six patients and 58 surgeons participated. The questionnaire consisted of four scales. Two of the scales reflected the paternalistic and consumerist poles of the liberal individualist model, one scale reflected concepts of Socratic autonomy and of procedural independence, and the fourth scale reflected ideals of risk disclosure. The Ideal Patient Autonomy Scale is a 14 item normative instrument. It is clearly distinct from the generally used psychological preference questionnaires that assess preferences for physician-patient roles.

Ideals of patient autonomy in clinical decision making: a study on the development of a scale to assess patients' and physicians' views

PubMed Central

Stiggelbout, A; Molewijk, A; Otten, W; Timmermans, D; van Bockel, J H; Kievit, J

2004-01-01

Objectives: Evidence based patient choice seems based on a strong liberal individualist interpretation of patient autonomy; however, not all patients are in favour of such an interpretation. The authors wished to assess whether ideals of autonomy in clinical practice are more in accordance with alternative concepts of autonomy from the ethics literature. This paper describes the development of a questionnaire to assess such concepts of autonomy. Methods: A questionnaire, based on six moral concepts from the ethics literature, was sent to aneurysm patients and their surgeons. The structure of the questionnaire was assessed by factor analysis, and item reduction was based on reliability. Results: Ninety six patients and 58 surgeons participated. The questionnaire consisted of four scales. Two of the scales reflected the paternalistic and consumerist poles of the liberal individualist model, one scale reflected concepts of Socratic autonomy and of procedural independence, and the fourth scale reflected ideals of risk disclosure. Discussion: The Ideal Patient Autonomy Scale is a 14 item normative instrument. It is clearly distinct from the generally used psychological preference questionnaires that assess preferences for physician-patient roles. PMID:15173361

[Ethical principles of clinical trials in minors].

PubMed

Koch, H J; Raschka, C

2002-12-05

Clinical trials in volunteers and patients are essential to ensure rational treatment of patients. As a rule, drugs are routinely developed for adults, but children are excluded. A major reason for this restriction are ethical justifications, in particular the lack of autonomy on the part of children. The principle of fairness, however, requires that everyone should benefit from progress. Industry, science and society are therefore called upon to find ways of making available safe and adequate treatment for children as quickly as possible, by defining the required conditions for pediatric clinical trials. Important principles are minimal risk, minimal invasivity, rapid decision-making, and careful documentation of trial results. Dynamic ethical principles, such as autonomy and competence in adolescents must be considered on equal footing with existing international GCP guidelines. Aspects of child psychology indicate that the autonomy of adolescents should be respected. Where economic incentives for such trials are absent, for example, in the case of non-pharmacological problems, pediatric trials must be considered a task for society as a whole.

Facilitating Autonomy and Creativity in Second Language Learning through Cyber-Tasks, Hyperlinks and Net-Surfing

ERIC Educational Resources Information Center

Akinwamide, T. K.; Adedara, O. G.

2012-01-01

The digitalization of academic interactions and collaborations in this present technologically conscious world is making collaborations between technology and pedagogy in the teaching and learning processes to display logical and systematic reasoning rather than the usual stereotyped informed decisions. This simply means, pedagogically, learning…

State vs. Local Control: Reality or Myth over Concern for Local Autonomy.

ERIC Educational Resources Information Center

Mundt, John C.

1978-01-01

As examples of the trend towards decision-making processes resting on the interaction of various legitimate public sector interests, the author considers outside forces producing operational strictures within the system, including executive orders, lapsing and allotment procedures, accounting requirements, information demands, legal opinions,…

SUNY Management Flexibility Program. Program Audit.

ERIC Educational Resources Information Center

New York State Legislative Commission on Expenditure Review, Albany.

This audit assesses implementation of the University Operating Flexibility Act by the State University of New York (SUNY). The legislation was designed to give SUNY more autonomy to make daily operating decisions, in order that SUNY could better compete with other major higher education institutions nationwide. The legislation empowered SUNY to…

Autonomy and Liberalism in a Multicultural Society

ERIC Educational Resources Information Center

Jewell, Paul

2005-01-01

That children should be educated to be ideal citizens, capable of making rational and informed decisions, has been proposed in cultures ranging from Ancient Greece to current societies. In particular, societies that favour liberalism preach the primacy of the individual autonomous citizen and a concomitant tolerance for others. In modern…

Preceptors' Perceptions of the Preparation and Qualifications for the Preceptor Role

ERIC Educational Resources Information Center

Nottingham, Sara

2015-01-01

Context: The 2012 Commission on Accreditation of Athletic Training Education (CAATE) standards include several changes that allow more institutional autonomy when determining the qualifications and preparation of preceptors. Clinical education coordinators (CECs) must make educated decisions in this area, yet minimal research exists to guide their…

Encouraging Learners to Create Language-Learning Materials

ERIC Educational Resources Information Center

Moiseenko, Veronika

2015-01-01

Student-produced materials are a powerful tool for promoting learner autonomy. They challenge the traditional paradigm of education because the very concept of learner-produced materials is based on trust in the student-centered learning process; when developing materials, learners do not rely on the teacher to make every decision. In this…

Attitudes Toward Family Involvement in Cancer Treatment Decision Making: The Perspectives of Patients, Family Caregivers, and Their Oncologists.

PubMed

Shin, Dong Wook; Cho, Juhee; Roter, Debra L; Kim, So Young; Yang, Hyung Kook; Park, Keeho; Kim, Hyung Jin; Shin, Hee-Young; Kwon, Tae Gyun; Park, Jong Hyock

2017-06-01

To investigate how cancer patients, family caregiver, and their treating oncologist view the risks and benefits of family involvement in cancer treatment decision making (TDM) or the degree to which these perceptions may differ. A nationwide, multicenter survey was conducted with 134 oncologists and 725 of their patients and accompanying caregivers. Participant answered to modified Control Preferences Scale and investigator-developed questionnaire regarding family involvement in cancer TDM. Most participants (>90%) thought that family should be involved in cancer TDM. When asked if the oncologist should allow family involvement if the patient did not want them involved, most patients and caregivers (>85%) thought they should. However, under this circumstance, only 56.0% of oncologists supported family involvement. Patients were significantly more likely to skew their responses toward patient rather than family decisional control than were their caregivers (P < .003); oncologists were more likely to skew their responses toward patient rather than family decisional control than caregivers (P < .001). Most respondents thought that family involvement is helpful and neither hamper patient autonomy nor complicate cancer TDM process. Oncologists were largely positive, but less so in these ratings than either patients or caregivers (P < .002). Patients, family caregivers, and, to a lesser degree, oncologists expect and valued family involvement in cancer TDM. These findings support a reconsideration of traditional models focused on protection of patient autonomy to a more contextualized form of relational autonomy, whereby the patient and family caregivers can be seen as a unit for autonomous decision. Copyright © 2016 John Wiley & Sons, Ltd.

Work ability of Dutch employees with rheumatoid arthritis.

PubMed

de Croon, E M; Sluiter, J K; Nijssen, T F; Kammeijer, M; Dijkmans, B A C; Lankhorst, G J; Frings-Dresen, M H W

2005-01-01

To (i) examine the association between fatigue, psychosocial work characteristics (job control, support, participation in decision making, psychological job demands), and physical work requirements on the one hand and work ability of employees with rheumatoid arthritis (RA) on the other, and (ii) determine the advice that health care professionals give to employees with RA on how to maintain their work ability. Data were gathered from 78 employees with early RA (response = 99%) by telephone interviews and self-report questionnaires. Fatigue, lack of autonomy, low coworker/supervisor support, low participation in decision making, and high physical work requirements (i.e. using manual force) predicted low work ability. High psychological job demands, however, did not predict low work ability. The rheumatologist, occupational physician, occupational therapist, physiotherapist, and psychologist gave advice on how to cope with RA at work to 36, 30, 27, 26, and 17% of the employees, respectively. Advice was directed mainly at factors intrinsic to the employee. Employees expressed a positive attitude towards this advice. Fatigue, lack of support, lack of autonomy, lack of participation in decision making, and using manual force at work (e.g. pushing and pulling) threaten the work ability of employees with RA. According to the employees with RA, involvement of health care professionals from different disciplines and the implementation of organizational and technical interventions would help them to tackle these threats.

Jordanian Physicians' Attitudes toward Disclosure of Cancer Information and Patient Participation in Treatment Decision-making.

PubMed

Obeidat, Rana; Khrais, Huthaifah I

2016-01-01

This study aims to determine the attitude of Jordanian physicians toward disclosure of cancer information, comfort and use of different decision-making approaches, and treatment decision making. A descriptive, comparative research design was used. A convenience sample of 86 Jordanian medical and radiation oncologists and surgeons practicing mainly in oncology was recruited. A modified version of a structured questionnaire was used for data collection. The questionnaire is a valid measure of physicians' views of shared decision making. Almost 91% of all physicians indicated that the doctor should tell the patient and let him/her decide if the family should know of an early-stage cancer diagnosis. Physicians provide abundant information about the extent of the disease, the side effects and benefits of the treatment, and details of the treatment procedures. They also provided less information on the effects of treatment on the sexuality, mood, and family of the patient. Almost 48% of the participating physicians reported using shared decision making as their usual approach for treatment decision making, and 67% reported that they were comfortable with this approach. The main setting of clinical activity was the only factor associated with physicians' usual approach to medical decision making. Moreover, age, years of experience, and main setting of clinical activity were associated with physicians' comfort level with the shared approach. Although Jordanian physicians appreciate patient autonomy, self-determination, and right to information, paternalistic decision making and underuse of the shared decision-making approach persist. Strategies that target both healthcare providers and patients must be employed to promote shared decision making in the Jordanian healthcare system.

Shared Decision Making and Autonomy Among US Participants with Multiple Sclerosis in the NARCOMS Registry

PubMed Central

Thomas, Nina; Tyry, Tuula; Fox, Robert J.; Salter, Amber

2017-01-01

Background: Treatment decisions in multiple sclerosis (MS) are affected by many factors and are made by the patient, doctor, or both. With new disease-modifying therapies (DMTs) emerging, the complexity surrounding treatment decisions is increasing, further emphasizing the importance of understanding decision-making preferences. Methods: North American Research Committee on Multiple Sclerosis (NARCOMS) Registry participants completed the Fall 2014 Update survey, which included the Control Preferences Scale (CPS). The CPS consists of five images showing different patient/doctor roles in treatment decision making. The images were collapsed to three categories: patient-centered, shared, and physician-centered decision-making preferences. Associations between decision-making preferences and demographic and clinical factors were evaluated using multivariable logistic regression. Results: Of 7009 participants, 79.3% were women and 93.5% were white (mean [SD] age, 57.6 [10.3] years); 56.7% reported a history of relapses. Patient-centered decision making was most commonly preferred by participants (47.9%), followed by shared decision making (SDM; 42.8%). SDM preference was higher for women and those taking DMTs and increased with age and disease duration (all P < .05). Patient-centered decisions were most common for respondents not taking a DMT at the time of the survey and were preferred by those who had no DMT history compared with those who had previously taken a DMT (P < .0001). There was no difference in SDM preference by current MS disease course after adjusting for other disease-related factors. Conclusions: Responders reported most commonly considering their doctor's opinion before making a treatment decision and making decisions jointly with their doctor. DMT use, gender, and age were associated with decision-making preference. PMID:29270088

Psychiatric service staff perceptions of implementing a shared decision-making tool: a process evaluation study

PubMed Central

Schön, Ulla-Karin; Grim, Katarina; Wallin, Lars; Rosenberg, David; Svedberg, Petra

2018-01-01

ABSTRACT Purpose: Shared decision making, SDM, in psychiatric services, supports users to experience a greater sense of involvement in treatment, self-efficacy, autonomy and reduced coercion. Decision tools adapted to the needs of users have the potential to support SDM and restructure how users and staff work together to arrive at shared decisions. The aim of this study was to describe and analyse the implementation process of an SDM intervention for users of psychiatric services in Sweden. Method: The implementation was studied through a process evaluation utilizing both quantitative and qualitative methods. In designing the process evaluation for the intervention, three evaluation components were emphasized: contextual factors, implementation issues and mechanisms of impact. Results: The study addresses critical implementation issues related to decision-making authority, the perceived decision-making ability of users and the readiness of the service to increase influence and participation. It also emphasizes the importance of facilitation, as well as suggesting contextual adaptations that may be relevant for the local organizations. Conclusion: The results indicate that staff perceived the decision support tool as user-friendly and useful in supporting participation in decision-making, and suggest that such concrete supports to participation can be a factor in implementation if adequate attention is paid to organizational contexts and structures. PMID:29405889

Psychiatric service staff perceptions of implementing a shared decision-making tool: a process evaluation study.

PubMed

Schön, Ulla-Karin; Grim, Katarina; Wallin, Lars; Rosenberg, David; Svedberg, Petra

2018-12-01

Shared decision making, SDM, in psychiatric services, supports users to experience a greater sense of involvement in treatment, self-efficacy, autonomy and reduced coercion. Decision tools adapted to the needs of users have the potential to support SDM and restructure how users and staff work together to arrive at shared decisions. The aim of this study was to describe and analyse the implementation process of an SDM intervention for users of psychiatric services in Sweden. The implementation was studied through a process evaluation utilizing both quantitative and qualitative methods. In designing the process evaluation for the intervention, three evaluation components were emphasized: contextual factors, implementation issues and mechanisms of impact. The study addresses critical implementation issues related to decision-making authority, the perceived decision-making ability of users and the readiness of the service to increase influence and participation. It also emphasizes the importance of facilitation, as well as suggesting contextual adaptations that may be relevant for the local organizations. The results indicate that staff perceived the decision support tool as user-friendly and useful in supporting participation in decision-making, and suggest that such concrete supports to participation can be a factor in implementation if adequate attention is paid to organizational contexts and structures.

[Shared decision making in breast cancer. Womens' attitudes].

PubMed

Martín-Fernández, Roberto; Abt-Sacks, Analía; Perestelo-Perez, Lilisbeth; Serrano-Aguilar, Pedro

2013-01-01

The patient autonomy and the greater role for women with breast cancer in the decisions about their health are recent issues in healthcare. The objective of this work is to identify and characterize the elements that influence them in treatment decisions. A phenomenological type qualitative study. Theoretical Sampling included 70 women diagnosed with breast cancer. 45 semi structured interviews and 3 focus groups were performed between October 2009 and July 2010 in 15 regions of Spain. The analysis was based on the principles of grounded theory with the support of Atlas.ti v6.1. Patients are likely to take an active or passive role regarding decision-making depending on different variables such as their age, the information available, their self-assessment as capable agents to make decisions and the relative importance given to physical appearance. As the disease progresses, it can cause a change in women attitude, from an initially passive attitude to a more active role. The attitude of health professionals concerning shared decision-making and the information they offer determines patient participation while the family plays an essential role as a support or reinforcement of decisions made by patients. The patients' attitude regarding the decision-making of patients is very variable, becoming increasingly important the emotional status, the level of information available and the influence of the context.

Genetic screening and testing in an episode-based payment model: preserving patient autonomy.

PubMed

Sutherland, Sharon; Farrell, Ruth M; Lockwood, Charles

2014-11-01

The State of Ohio is implementing an episode-based payment model for perinatal care. All costs of care will be tabulated for each live birth and assigned to the delivering provider, creating a three-tiered model for reimbursement for care. Providers will be reimbursed as usual for care that is average in cost and quality, while instituting rewards or penalties for those outside the expected range in either domain. There are few exclusions, and all methods of genetic screening and diagnostic testing are included in the episode cost calculation as proposed. Prenatal ultrasonography, genetic screening, and diagnostic testing are critical components of the delivery of high-quality, evidence-based prenatal care. These tests provide pregnant women with key information about the pregnancy, which, in turn, allows them to work closely with their health care provider to determine optimal prenatal care. The concepts of informed consent and decision-making, cornerstones of the ethical practice of medicine, are founded on the principles of autonomy and respect for persons. These principles recognize that patients' rights to make choices and take actions are based on their personal beliefs and values. Given the personal nature of such decisions, it is critical that patients have unbarred access to prenatal genetic tests if they elect to use them as part of their prenatal care. The proposed restructuring of reimbursement creates a clear conflict between patient autonomy and physician financial incentives.

Current challenges in autonomous vehicle development

NASA Astrophysics Data System (ADS)

Connelly, J.; Hong, W. S.; Mahoney, R. B., Jr.; Sparrow, D. A.

2006-05-01

The field of autonomous vehicles is a rapidly growing one, with significant interest from both government and industry sectors. Autonomous vehicles represent the intersection of artificial intelligence (AI) and robotics, combining decision-making with real-time control. Autonomous vehicles are desired for use in search and rescue, urban reconnaissance, mine detonation, supply convoys, and more. The general adage is to use robots for anything dull, dirty, dangerous or dumb. While a great deal of research has been done on autonomous systems, there are only a handful of fielded examples incorporating machine autonomy beyond the level of teleoperation, especially in outdoor/complex environments. In an attempt to assess and understand the current state of the art in autonomous vehicle development, a few areas where unsolved problems remain became clear. This paper outlines those areas and provides suggestions for the focus of science and technology research. The first step in evaluating the current state of autonomous vehicle development was to develop a definition of autonomy. A number of autonomy level classification systems were reviewed. The resulting working definitions and classification schemes used by the authors are summarized in the opening sections of the paper. The remainder of the report discusses current approaches and challenges in decision-making and real-time control for autonomous vehicles. Suggested research focus areas for near-, mid-, and long-term development are also presented.

Guiding concepts for park and wilderness stewardship in an era of global environmental change

USGS Publications Warehouse

Hobbs, Richard J.; Cole, David N.; Yung, Laurie; Zavaleta, Erika S.; Aplet, Gregory H.; Chapin, F. Stuart; Landres, Peter B.; Parsons, David J.; Stephenson, Nathan L.; White, Peter S.; Graber, David M.; Higgs, Eric S.; Millar, Constance I.; Randall, John M.; Tonnessen, Kathy A.; Woodley, Stephen

2010-01-01

The major challenge to stewardship of protected areas is to decide where, when, and how to intervene in physical and biological processes, to conserve what we value in these places. To make such decisions, planners and managers must articulate more clearly the purposes of parks, what is valued, and what needs to be sustained. A key aim for conservation today is the maintenance and restoration of biodiversity, but a broader range of values are also likely to be considered important, including ecological integrity, resilience, historical fidelity (ie the ecosystem appears and functions much as it did in the past), and autonomy of nature. Until recently, the concept of "naturalness" was the guiding principle when making conservation-related decisions in park and wilderness ecosystems. However, this concept is multifaceted and often means different things to different people, including notions of historical fidelity and autonomy from human influence. Achieving the goal of nature conservation intended for such areas requires a clear articulation of management objectives, which must be geared to the realities of the rapid environmental changes currently underway. We advocate a pluralistic approach that incorporates a suite of guiding principles, including historical fidelity, autonomy of nature, ecological integrity, and resilience, as well as managing with humility. The relative importance of these guiding principles will vary, depending on management goals and ecological conditions.

[Implementation of ethics services. Opportunities and obstacles].

PubMed

Salomon, F

2015-04-01

Medical success in the last century has caused situations, in which the question arises whether therapy is right. In the same time autonomy has become more and more important. Furthermore, human beings want to decide on health, life and dying. Experience of limitations of life and desire of autonomy in healthcare lead to ethical questions. Different ethical services were established to deal with and to solve problems. Ethics committees with multiprofessional members and different qualifications will give guidance in critical decision making. Ethics services do not receive responsibility for the decision, but helps those who are responsible by structured reflection, estimation of values and including all concerned. Implementing ethics services also encounters obstructions and scepticism. Time, responsibility for therapy and criticism of customs and structures must be considered to perpetuate success. Instructions for implementing ethics services are presented.

Legal protection of informed consent of minors.

PubMed

Osuna, Eduardo

2010-06-01

One of the pillars of healthcare provision is respect for the autonomy of the patient's wishes, which is given substance by the process of obtaining informed consent. Minors deserve special protection, entitled to basic rights and increasingly autonomous as they develop. In certain situations, minors are deemed matures and able to consent to treatment without the involvement of a parent or guardian. The assessment of competence would be based on the child's functional ability, not on age or outcome of the decision. This manuscript includes a brief analysis of legal perspectives on informed consent of minors, and minors' capacities to make medical decisions. Remaining questions of how to evaluate capacity and balance parental and minor autonomy are explored. Considerations on informed consent in different situations as refusing treatment and termination of pregnancy by female children are analyzed.

Documenting moral agency: a qualitative analysis of abortion decision making for fetal indications.

PubMed

Gawron, Lori M; Watson, Katie

2017-02-01

We explored whether the decision-making process of women aborting a pregnancy for a fetal indication fit common medical ethical frameworks. We applied three ethical frameworks (principlism, care ethics, and narrative ethics) in a secondary analysis of 30 qualitative interviews from women choosing 2nd trimester abortion for fetal indications. All 30 women offered reasoning consistent with one or more ethical frameworks. Principlism themes included avoidance of personal suffering (autonomy), and sparing a child a poor quality of life and painful medical interventions (beneficence/non-maleficence). Care ethics reasoning included relational considerations of family needs and resources, and narrative ethics reasoning contextualized this experience into the patient's life story. This population's universal application of commonly accepted medical ethical frameworks supports the position that patients choosing fetal indication abortions should be treated as moral decision-makers and given the same respect as patients making decisions about other medical procedures. These findings suggest recent political efforts blocking abortion access should be reframed as attempts to undermine the moral decision-making of women. Published by Elsevier Inc.

Informed consent to opioid agonist maintenance treatment: recommended ethical guidelines.

PubMed

Carter, Adrian; Hall, Wayne

2008-02-01

Some bioethicists have questioned whether opioid addicted individuals are able to provide free and informed consent to opioid agonist maintenance treatment. Conflicting motives for providing such treatment (e.g. improving the personal health of addicts and protecting public health and order) can also influence what individuals are required to consent to, and how that consent is obtained. We discuss both issues and attempt to specify the conditions for obtaining informed consent to agonist maintenance treatment for opioid addiction. We briefly review the neuroscientific literature on the effects of addiction on the autonomy and decision-making capacity of opioid dependent individuals, and ascertain how informed consent to the treatment of opioid addiction should be obtained. We also provide an ethical analysis of the competing social and medical forces that influence the consent process and make some recommendations on how to ensure that individuals enter maintenance treatment that is provided in an effective and ethical way. Our analysis shows that whilst the autonomy of opioid dependent individuals is impaired by their addiction, they do retain the ability to consent to treatment provided they are not in acute withdrawal or intoxication. These symptoms should have abated, either by supervised withdrawal or stabilisation on agonist maintenance, before they are asked to consent to a detailed treatment contract. Once stabilised, individuals should be provided with detailed information about the risks and benefits of all treatments, and restrictions and regulations under which they are provided. Informed consent is an important part of the treatment process that should be obtained in ways that increase the autonomy and decision-making capacity in opioid addicts.

Nudges in a post-truth world

PubMed Central

2017-01-01

Nudges—policy proposals informed by work in behavioural economics and psychology that are designed to lead to better decision-making or better behaviour—are controversial. Critics allege that they bypass our deliberative capacities, thereby undermining autonomy and responsible agency. In this paper, I identify a kind of nudge I call a nudge to reason, which make us more responsive to genuine evidence. I argue that at least some nudges to reason do not bypass our deliberative capacities. Instead, use of these nudges should be seen as appeals to mechanisms partially constitutive of these capacities, and therefore as benign (so far as autonomy and responsible agency are concerned). I sketch some concrete proposals for nudges to reason which are especially important given the apparent widespread resistance to evidence seen in recent political events. PMID:28526778

Braving difficult choices alone: children's and adolescents' medical decision making.

PubMed

Ruggeri, Azzurra; Gummerum, Michaela; Hanoch, Yaniv

2014-01-01

What role should minors play in making medical decisions? The authors examined children's and adolescents' desire to be involved in serious medical decisions and the emotional consequences associated with them. Sixty-three children and 76 adolescents were presented with a cover story about a difficult medical choice. Participants were tested in one of four conditions: (1) own informed choice; (2) informed parents' choice to amputate; (3) informed parents' choice to continue a treatment; and (4) uninformed parents' choice to amputate. In a questionnaire, participants were asked about their choices, preference for autonomy, confidence, and emotional reactions when faced with a difficult hypothetical medical choice. Children and adolescents made different choices and participants, especially adolescents, preferred to make the difficult choice themselves, rather than having a parent make it. Children expressed fewer negative emotions than adolescents. Providing information about the alternatives did not affect participants' responses. Minors, especially adolescents, want to be responsible for their own medical decisions, even when the choice is a difficult one. For the adolescents, results suggest that the decision to be made, instead of the agent making the decision, is the main element influencing their emotional responses and decision confidence. For children, results suggest that they might be less able than adolescents to project how they would feel. The results, overall, draw attention to the need to further investigate how we can better involve minors in the medical decision-making process.

A semi-qualitative study of attitudes to vaccinating adolescents against human papillomavirus without parental consent.

PubMed

Brabin, Loretta; Roberts, Stephen A; Kitchener, Henry C

2007-02-09

The first vaccine to prevent human papillomavirus (HPV) and cervical cancer has been licensed, and in future, vaccination may be routinely offered to 10-14 year old girls. HPV is a sexually transmitted virus and some parents may refuse consent for vaccination. Under-16s in the UK have a right to confidential sexual health care without parental consent. We investigated parents' views on making available HPV vaccination to adolescent minors at sexual health clinics without parental consent. This was a semi-qualitative analysis of views of parents of 11-12 year old school children collected as part of a population-based survey of parental attitudes to HPV vaccination in Manchester. Parents were firstly asked if they agreed that a well-informed child should be able to request vaccination at a sexual health clinic without parental consent, and secondly, to provide a reason for this answer. Ethical perspectives on adolescent autonomy provided the framework for descriptive analysis. 307 parents answered the question, and of these, 244 (80%) explained their views. Parents with views consistent with support for adolescent autonomy (n = 99) wanted to encourage responsible behaviour, protect children from ill-informed or bigoted parents, and respected confidentiality and individual rights. In contrast, 97 parents insisted on being involved in decision-making. They emphasised adult responsibility for a child's health and guidance, erosion of parental rights, and respect for cultural and moral values. Other parents (n = 48) wanted clearer legal definitions governing parental rights and responsibilities or hoped for joint decision-making. Parents resistant to adolescent autonomy would be less likely to consent to future HPV vaccination, (67%) than parents supporting this principle (89%; p < 0.001). In the UK, the principle of adolescent autonomy is recognised and logically should include the right to HPV vaccination, but this may concern parents who would otherwise approve vaccination.

The Assisted Decision-Making (Capacity) Act 2015: what it is and why it matters.

PubMed

Kelly, B D

2017-05-01

Ireland's Assisted Decision-Making (Capacity) Act 2015 was signed by President Higgins in December 2015 and scheduled for commencement in 2016. To explore the content and implications of the 2015 Act. Review of the 2015 Act and related literature. The 2015 Act places the "will and preferences" of persons with impaired mental capacity at the heart of decision-making relating to "personal welfare" (including healthcare) and "property and affairs". Capacity is to be "construed functionally" and interventions must be "for the benefit of the relevant person". The Act outlines three levels of decision-making assistance: "decision-making assistant", "co-decision-maker" (joint decision-maker) and "decision-making representative" (substitute decision-maker). There are procedures relating to "enduring power of attorney" and "advance healthcare directives"; in the case of the latter, a "refusal of treatment" can be legally binding, while a "request for a specific treatment" must "be taken into consideration". The 2015 Act is considerably more workable than the 2013 Bill that preceded it. Key challenges include the subtle decision-making required by patients, healthcare staff, Circuit Court judges and the director of the Decision Support Service; implementation of "advance healthcare directives", especially if they do not form part of a broader model of advance care planning (incorporating the flexibility required for unpredictable future circumstances); and the over-arching issue of logistics, as very many healthcare decisions are currently made in situations where the patient's capacity is impaired. A key challenge will lie in balancing the emphasis on autonomy with principles of beneficence, mutuality and care.

76 FR 2337 - Certain Cased Pencils From the People's Republic of China: Preliminary Results and Partial...

Federal Register 2010, 2011, 2012, 2013, 2014

2011-01-13

... has autonomy from the government in making decisions regarding the selection of management; and (4... Financial Statistics. When relying on prices of imports into India as surrogate values, we have disregarded... the 2006-2007 financial statement of Triveni Pencils Ltd. (``Triveni''), an Indian producer of pencils...

Curriculum Policy Implementation: How Schools Respond to Government's "Soft" Policy in the Curriculum Reform

ERIC Educational Resources Information Center

Chan, Jacqueline K. S.

2012-01-01

"Soft" policy has newly emerged as a policy implementation concept in relation to governance. Non-binding in character, "soft" policy is designed for multi-level systems of governance in which there is relative autonomy at different levels of collective decision-making. "Soft" policy has gained attention since the…

The Development of Taking Responsibility and Its Influence in Organisations

ERIC Educational Resources Information Center

Klutmann, Beate

2007-01-01

Modern managers expect staff to accept more responsibility. However, not all of them want to take more responsibility. Others complain of not having enough responsibility entrusted to them and expect more autonomy and decision-making. In this paper, responsibility is defined as being accountable and fulfilling one's duty while being in charge.…

Community Redefined: School Leaders Moving from Autonomy to Global Interdependence through Short-Term Study Abroad

ERIC Educational Resources Information Center

Fine, Janis B.; McNamara, Krista W.

2011-01-01

In times of increased global interdependence, producing inter-culturally competent school leaders who can engage in informed, ethical decision-making when confronted with problems that involve a diversity of perspectives is becoming an urgent leadership priority. Helping school leaders form and internalize a global perspective requires today's…

Legal Reforms Affecting Child and Youth Services: An Introduction.

ERIC Educational Resources Information Center

Melton, Gary B.

1982-01-01

Several Supreme Court decisions in the last 15 years have demonstrated expanding recognition of the rights of minors and other dependent groups. At the same time, these recent trends have engendered conflicts concerning minors' competence to make judgments, relationships between child and family autonomy, and differing interests in child advocacy.…

Respect for patient autonomy as a medical virtue.

PubMed

Cook, Thomas; Mavroudis, Constantine D; Jacobs, Jeffrey P; Mavroudis, Constantine

2015-12-01

Respect for patient autonomy is an important and indispensable principle in the ethical practice of clinical medicine. Legal tenets recognise the centrality of this principle and the inherent right of patients of sound mind - properly informed - to make their own personal medical decisions. In the course of everyday medical practice, however, challenging cases may result in ethical dilemmas for the patient, the physician, and society. Resolution of these dilemmas requires a thorough understanding of the underlying principles that allow the clinician to make informed decisions and to offer considered therapeutic options to the patient. We argue in this paper that there is also need for a transition of moral competency from understanding principles to attaining virtue in the classic Aristotelian tradition. Achieving moral virtue is based on a lifetime of learning, practising, and watching how others, who have achieved virtue, act and perform their duties. We further claim that learning moral virtue in medical practice is best realised by incorporating the lessons learnt during daily rounds where frank discussions and considered resolutions can occur under the leadership of senior practitioners who have achieved a semblance of moral excellence.

"I've never been a yes person": Decision-making participation and self-conceptualization after severe traumatic brain injury.

PubMed

Knox, Lucy; Douglas, Jacinta M; Bigby, Christine

2017-11-01

Although adults who sustain a severe traumatic brain injury (TBI) require support to make decisions in their lives, little is known about their experience of this process. The aim of this study was to explore how participation in decision making contributes to self-conceptualization in adults with severe TBI. We used constructivist grounded theory methods. Data included 20 in-depth interviews with adults with severe TBI. Through a process of constant comparison, analysis involved open and focused coding until clear categories emerged and data saturation was achieved. Self-conceptualization emerged as a complex and multifaceted process, as individuals with TBI aimed to reestablish a sense of autonomy. We describe a recursive relationship in which decision-making participation assists the dynamic construction of self, and self-concept contributes to the experience of making decisions. The role of an individual's social support network in acting as a bridge between participation and self-conceptualization is presented. Findings emphasize that contributing to decisions about one's own goals across a range of life areas can reinforce a positive self-concept. It is vital that supporters understand that participation in decision making provides a pathway to conceptualizing self and aim to maximize the person's participation in the decision-making process. Implications for Rehabilitation Previous research has identified that the experience of sustaining TBI has a significant impact on a person's conceptualization of self. This study identified that decision-making experiences play an important role in the ongoing process of self-conceptualization after injury. Decision-making experiences can reinforce a person's self-concept or lead them to revise (positively or negatively) their sense of self. By maximizing the person's decision-making participation, those around them can support them to develop positive self-attributes and contribute to shaping their future goals.

Return-to-Play in 2017 and the Role of Shared Decision-Making in Patients with Inherited and Acquired Channelopathies and Cardiomyopathies.

PubMed

Afshar, Kia; Bunch, T Jared

2017-09-14

Shared decision-making is based upon a physician-patient encounter in which there is adequate education using aids if needed, a mutual discussion of how to assist the patient in weighing risks and benefits, and a supportive environment that allows the patient to deliberate on the clinical decision and make their own choice. This decision-making paradigm centers on the principles of autonomy and self-determination. Physical activity is a critical part of healthy lifestyle choices that helps lower risk of cardiovascular disease or the progression of it. Exercise is also a significant contributor to quality of life in many patients in additional to the health benefits. In patients with inherited or acquired cardiovascular disease, exercise may increase risk of electrical and hemodynamic instability. There is a paucity of data to guide physicians and committees that create guidelines regarding athletic and fitness participation in these patients, particularly when the patient wants to participate in those activities that are considered moderate-severe in intensity. As a consequence, the principles of shared decision-making are critical for physicians to use to help patients with cardiovascular disease make the best decision regarding fitness participation that will minimize their risk of new disease or progression of their disease and enhance their quality of life.

Women's autonomy and experience of physical violence within marriage in rural India: evidence from a prospective study.

PubMed

Sabarwal, Shagun; Santhya, K G; Jejeebhoy, Shireen J

2014-01-01

Evidence regarding the relationship between married women's autonomy and risk of marital violence remains mixed. Moreover, studies examining the contribution of specific aspects of women's autonomy in influencing the risk of marital violence using measures of autonomy that incorporate its dynamic nature are rare. We investigated the relationship between women's autonomy and their experience of marital violence in rural India using prospective data. We used data on 4,904 rural women drawn from two linked studies: the NFHS-2, conducted during 1998-1999 and a follow-up study for a subgroup of women carried out during 2002-2003. Three dimensions of autonomy were used: financial autonomy, freedom of movement, and household decision-making. Marital violence was measured as experience of physical violence in the year prior to the follow-up survey. Findings indicate the protective effects of financial autonomy and freedom of movement in reducing the risk of marital violence in the overall model. Furthermore, region-wise analysis revealed that in the more gender equitable settings of south India, financial autonomy exerted a protective influence on risk of marital violence. However, in the more gender-stratified settings of north India, none of the dimensions of autonomy were found to have any protective effect on women's risk of marital violence. Results argue for an increased focus on strategies aimed at improving women's financial status through livelihood skill-building opportunities, development of a strong savings orientation, and asset-building options.

End-of-Life Decision Making in Palliative Care and Recommendations of the Council of Europe: Qualitative Secondary Analysis of Interviews and Observation Field Notes.

PubMed

Martins Pereira, Sandra; Fradique, Emília; Hernández-Marrero, Pablo

2018-05-01

End-of-life decisions (ELDs) are embedded in clinical, sociocultural, political, economic, and ethical concerns. In 2014, the Council of Europe (CoE) through its Committee on Bioethics launched the "Guide on the decision-making process regarding medical treatment in end-of-life situations," aiming at improving decision-making processes and empowering professionals in making ELDs. To analyze if end-of-life decision making in palliative care (PC) is consistent with this Guide and to identify if disputed/controversial issues are part of current ELDs. Qualitative secondary analysis. Four qualitative datasets, including 44 interviews and 9 team observation field notes from previous studies with PC teams/professionals in Portugal. An analysis grid based on the abovementioned guide was created considering three dimensions: ethical and legal frameworks, decision-making process, and disputed/controversial issues. The majority of the professionals considered the ethical principle of autonomy paramount in end-of-life decision making. Justice and beneficence/nonmaleficence were also valued. Although not mentioned in the Guide, the professionals also considered other ethical principles when making ELDs, namely, responsibility, integrity, and dignity. Most of the interviewees and field notes referred to the collective interprofessional dimension of the decision-making process. Palliative sedation and the wish to hasten death were the most mentioned disputed/controversial issues. The nature, limitations, and benefits of qualitative secondary analysis are discussed. End-of-life decision-making processes made by Portuguese PC teams seem to be consistent with the guidelines of the CoE. Further research is needed about disputed/controversial issues and the actual use, effectiveness, and impact of ethical guidelines for end-of-life decision making on professionals' empowerment and for all parties involved.

Older adults newly diagnosed with symptomatic myeloma and treatment decision making.

PubMed

Tariman, Joseph D; Doorenbos, Ardith; Schepp, Karen G; Singhal, Seema; Berry, Donna L

2014-07-01

To describe the preferences for participation in decision making of older adult patients newly diagnosed with symptomatic myeloma and to explore the association between sociodemographic variables and decisional role preferences. Descriptive, cross-sectional design. Participants' homes and two large academic cancer centers in Seattle, WA, and Chicago, IL. A convenience sample of 20 older adults (60 years of age and older) with symptomatic myeloma diagnosed within the past six months. The Control Preferences Scale was administered followed by an in-person, one-time, semistructured interview. Role preferences for participation in treatment decision making, age, gender, race, work status, personal relationship status, education, and income. Fifty-five percent of the participants preferred a shared role with the physician and 40% preferred to make the decisions after seriously considering the opinion of their physicians. Only one participant preferred to leave the decision to the doctor, as long as the doctor considered the patient's treatment preferences. The study findings indicate that older adults newly diagnosed with myeloma want to participate in treatment decision making. Oncology nurses must respect the patient's desired role preference and oncology clinicians must listen to the patient and allow him or her to be autonomous in making treatment decisions. Nurses and other oncology clinicians can elicit a patient's preferred level of participation in treatment decision making. Oncology nurses can make sure patients receive disease- and treatment-related information, encourage them to express their decisional role preference to the physician, develop a culture of mutual respect and value their desire for autonomy for treatment decision making, acknowledge that the right to make a treatment choice belongs to the patient, and provide support during treatment decision making throughout the care continuum.

Quantum decision-maker theory and simulation

NASA Astrophysics Data System (ADS)

Zak, Michail; Meyers, Ronald E.; Deacon, Keith S.

2000-07-01

A quantum device simulating the human decision making process is introduced. It consists of quantum recurrent nets generating stochastic processes which represent the motor dynamics, and of classical neural nets describing the evolution of probabilities of these processes which represent the mental dynamics. The autonomy of the decision making process is achieved by a feedback from the mental to motor dynamics which changes the stochastic matrix based upon the probability distribution. This feedback replaces unavailable external information by an internal knowledge- base stored in the mental model in the form of probability distributions. As a result, the coupled motor-mental dynamics is described by a nonlinear version of Markov chains which can decrease entropy without an external source of information. Applications to common sense based decisions as well as to evolutionary games are discussed. An example exhibiting self-organization is computed using quantum computer simulation. Force on force and mutual aircraft engagements using the quantum decision maker dynamics are considered.

Women's autonomy and husbands' involvement in maternal health care in Nepal.

PubMed

Thapa, Deependra Kaji; Niehof, Anke

2013-09-01

Both increasing women's autonomy and increasing husbands' involvement in maternal health care are promising strategies to enhance maternal health care utilization. However, these two may be at odds with each other insofar as autonomous women may not seek their husband's involvement, and involved husbands may limit women's autonomy. This study assessed the relationship between women's autonomy and husbands' involvement in maternal health care. Field work for this study was carried out during September-November 2011 in the Kailali district of Nepal. In-depth interviews and focus group discussions were used to investigate the extent of husbands' involvement in maternal health care. A survey was carried out among 341 randomly selected women who delivered a live baby within one year prior to the survey. The results show that husbands were involved in giving advice, supporting to reduce the household work burden, and making financial and transportation arrangements for the delivery. After adjustment for other covariates, economic autonomy was associated with lower likelihood of discussion with husband during pregnancy, while domestic decision-making autonomy was associated with both lower likelihood of discussion with husband during pregnancy and the husband's presence at antenatal care (ANC) visits. Movement autonomy was associated with lower likelihood of the husband's presence at ANC visits. Intra-spousal communication was associated with higher likelihood of discussing health with the husband during pregnancy, birth preparedness, and the husbands' presence at the health facility delivery. The magnitude and direction of association varied per autonomy dimension. These findings suggest that programs to improve the women's autonomy and at the same time increase the husband's involvement should be carefully planned. Despite the traditional cultural beliefs that go against the involvement of husbands, Nepalese husbands are increasingly entering into the area of maternal health which was traditionally considered 'women's business'. Copyright © 2013 Elsevier Ltd. All rights reserved.

Moral contracts and the patient-physician relationship.

PubMed

Rothbard, D

1984-01-01

Rothbart critically examines Robert Veatch's contractual model of the physician patient relationship, which grounds a physician's obligations in a just decision procedure and requires a mutual, full disclosure of personal values and ethical principles. He sees Veatch's model as making unrealistic demands on both parties, and instead proposes a counseling-sanctioning model. In this model, two conceptions of individual autonomy, one creating a right to voluntary and independent decision making and the other addressing the ability to act freely, establish rights and duties for patient and physician. Rothbart argues that this model realistically represents the value-laden dimensions of medicine and mandates reasonable standards of patient care.

Ethical decision-making in the dilemma of the intersex infant.

PubMed

Lathrop, Breanna L; Cheney, Teresa B; Hayman, Annette B

2014-03-01

The Making Ethical Decisions about Surgical Intervention (MEDSI) tool is designed to guide health care professionals, patients, and families faced with ethically charged decisions regarding surgical interventions for pediatric patients. MEDSI is built on the principles of beneficence, nonmaleficence, and patient autonomy and created to promote truth-telling, compassion, respect for patient cultural and religious preferences, and appropriate follow up in the clinical setting. Following an overview of the 8 steps that compose MEDSI, the tool is applied to the management of intersex infants. The birth of a child with a disorder of sexual development (DSD) and ambiguous genitalia presents an ethically challenging situation for the family and health care team. The use of the MEDSI model is demonstrated in a case study involving the decision of surgical intervention in the management of an intersex child.

Decision making in critically ill patients with hematologic malignancy.

PubMed Central

Crawford, S. W.

1991-01-01

Hematologic neoplasms that were previously considered fatal are now potentially curable with techniques such as bone marrow transplantation. Such therapies also carry significant morbidity and mortality. With the increasing application of these therapies, a growing number of physicians are using medical decision making regarding critical care for these patients. The process by which ethical decisions are reached for these critically ill patients may be baffling because of several factors: rapidly evolving treatments, uncertain probabilities of the cure of the malignant disorder, the relatively young age of many of these patients, and the poor prognosis with critical illness. I discuss a process to reach acceptable decisions, providing a case example of the application of the process. This process is derived from the ethical principles that drive decision making in general medicine and attempts to maximize patients' autonomy. It involves a consideration of accurate information regarding the disease process and the prognosis, a clear delineation of the goals of the medical care, and communication with patients. Appropriate, ethical, and consistent decisions regarding the critical care of patients with hematologic malignancy can be reached when these considerations are addressed. PMID:1815387

The use of video-based patient education for shared decision-making in the treatment of prostate cancer.

PubMed

Gomella, L G; Albertsen, P C; Benson, M C; Forman, J D; Soloway, M S

2000-08-01

Increased consumerism, patient empowerment, and autonomy are creating a health care revolution. In recent years, the public has become better informed and more sophisticated. An extraordinary amount of treatment advice from books, the media, and the Internet is available to patients today, although much of it is confusing or conflicting. Consequently, the traditional, paternalistic doctor-patient relationship is yielding to a more consumerist one. The new dynamic is based on a participatory ethic and a change in the balance of power. This shared decision-making creates a true partnership between professionals and patients, in which each contributes equally to decisions about treatment or care. Evidence suggests that in diseases such as prostate cancer, where there may be a number of appropriate treatment options for a particular patient, shared decision-making may lead to improved clinical and quality-of-life outcomes. This article explores the evolving relationship between the physician and patient, the pros and cons of shared decision-making, and the use of video technology in the clinical setting. The authors review the use of medical decision aids, including a video-based educational program called CHOICES, in the treatment of prostate cancer and other diseases.

Women's Autonomy and Its Correlates in Western Nepal: A Demographic Study.

PubMed

Bhandari, Tulsi Ram; Kutty, V Raman; Ravindran, T K Sundari

2016-01-01

Despite various efforts for enhancing women's autonomy in developing countries, many women are deprived of their capacity in decision-making on their household affairs as well as social issues. This paper aimed to examine women's autonomy and its associated factors in the Kapilvastu district of Nepal. We measured women's autonomy using a recently developed women's autonomy measurement scale from June to October 2014. Descriptive statistics, chi-square test and logistic multivariate modeling technique were applied for assessing the association of demographic and socio-economic characteristics of women and their autonomy. Mean score for women's autonomy was 23.34 ± 8.06 out of the possible maximum 48. It was found to be positively associated with higher age difference at marriage, advantaged caste/ethnicity, better employment for the husband, couple's education more than 10 years schooling, and higher economic status of the household. We found strong direct effect of women's education (OR = 8.14, CI = 3.77-17.57), husband's education (OR = 2.63, CI = 1.69-4.10) and economic status of household (OR = 1.42, CI = 1.01-2.03) on women's autonomy. When we adjusted women's education for husband's education, the odds ratio decreased by around 22% {from (OR = 8.14, CI = 3.77-17.57) to (OR = 6.32, CI = 2.77-14.46)} and was a mediator effect. The economic status of household also had mediator effect on women's autonomy through their education. Education status of women is a key predictor of women's autonomy in Kapilvastu district. Husband's education and economic status of the household are other important predictors of women's autonomy which have a mediator effect on women's autonomy. Improving educational status and economic conditions of both women and their husbands may be the best solution to promote women's autonomy.

Safe delivery care practices in western Nepal: Does women's autonomy influence the utilization of skilled care at birth?

PubMed

Bhandari, Tulsi Ram; Kutty, V Raman; Sarma, P Sankara; Dangal, Ganesh

2017-01-01

Despite various efforts to increase the utilization of skilled birth attendants (SBA), nearly two-thirds of deliveries take place at home without the assistance of SBAs in Nepal. We hypothesized that the ability of women to take decisions about their own lives-women's autonomy-plays an important part in birth choices. To know this, we conducted a community-based cross-sectional study for assessing women's autonomy and utilization of safe delivery care service in Kapilvastu district of Nepal from June to October 2014. We used multivariate modeling to associate socioeconomic factors and women's autonomy with the utilization of safe delivery care services. Just over one-third of women sought institutional delivery care during the birth of their last child. Out of the total deliveries at health facilities, nearly 58% women visited health facility for self-reported emergency obstructive care. Only 6.2% home deliveries were handled by health workers and 14.7% women used the safe delivery kit for home delivery care. Higher levels of women's education had a strong positive association (odds ratio = 24.11, CI = 9.43-61.64) with institutional delivery care. Stratified analysis showed that when the husband is educated, women's education seems to work partly through their autonomy in decision making. Educational status of women emerged as one of the key predictors of the utilization of delivery care services in Kapilvastu district. Economic status of household and husband's education are other dominant predictors of the utilization of safe delivery care services. Improving the economic and educational status may be the way out for improving the proportion of institutional deliveries. Women's autonomy may be an important mediating factor in this pathway.

Beneficent Persuasion: Techniques and Ethical Guidelines to Improve Patients’ Decisions

PubMed Central

Swindell, J. S.; McGuire, Amy L.; Halpern, Scott D.

2010-01-01

Physicians frequently encounter patients who make decisions that contravene their long-term goals. Behavioral economists have shown that irrationalities and self-thwarting tendencies pervade human decision making, and they have identified a number of specific heuristics (rules of thumb) and biases that help explain why patients sometimes make such counterproductive decisions. In this essay, we use clinical examples to describe the many ways in which these heuristics and biases influence patients’ decisions. We argue that physicians should develop their understanding of these potentially counterproductive decisional biases and, in many cases, use this knowledge to rebias their patients in ways that promote patients’ health or other values. Using knowledge of decision-making psychology to persuade patients to engage in healthy behaviors or to make treatment decisions that foster their long-term goals is ethically justified by physicians’ duties to promote their patients’ interests and will often enhance, rather than limit, their patients’ autonomy. We describe techniques that physicians may use to frame health decisions to patients in ways that are more likely to motivate patients to make choices that are less biased and more conducive to their long-term goals. Marketers have been using these methods for decades to get patients to engage in unhealthy behaviors; employers and policy makers are beginning to consider the use of similar approaches to influence healthy choices. It is time for clinicians also to make use of behavioral psychology in their interactions with patients. PMID:20458111

The origins and consequences of patient autonomy: a 25-year retrospective.

PubMed

Rothman, D J

2001-01-01

This essay explores the evolution of the tension between the principles of autonomy and beneficence in American health care over the past several decades. In retrospect it is clear that the social movements of the 1960s and 70s set the tone and the goals for the emergence of a new emphasis on patient autonomy. Indeed, the impact of civil liberties-minded lawyers on the promotion of a commitment to autonomy is far more vital than the term "bioethics" commonly suggests. Tracing the impact of this principle on clinical encounters over the past 25 years makes apparent that consumers have extended their influence over a wide range of treatment decisions. This influence is now being reinforced by an extraordinary information revolution, which includes the computer, the web, the dot.coms, the search engines, and such novel practices as Direct-to-Consumer advertising by pharmaceutical companies. The impact of these developments may be seen in such diverse issues as physician-assisted suicide and the failure of national health insurance initiatives.

A Briefing on Metrics and Risks for Autonomous Decision-Making in Aerospace Applications

NASA Technical Reports Server (NTRS)

Frost, Susan; Goebel, Kai Frank; Galvan, Jose Ramon

2012-01-01

Significant technology advances will enable future aerospace systems to safely and reliably make decisions autonomously, or without human interaction. The decision-making may result in actions that enable an aircraft or spacecraft in an off-nominal state or with slightly degraded components to achieve mission performance and safety goals while reducing or avoiding damage to the aircraft or spacecraft. Some key technology enablers for autonomous decision-making include: a continuous state awareness through the maturation of the prognostics health management field, novel sensor development, and the considerable gains made in computation power and data processing bandwidth versus system size. Sophisticated algorithms and physics based models coupled with these technological advances allow reliable assessment of a system, subsystem, or components. Decisions that balance mission objectives and constraints with remaining useful life predictions can be made autonomously to maintain safety requirements, optimal performance, and ensure mission objectives. This autonomous approach to decision-making will come with new risks and benefits, some of which will be examined in this paper. To start, an account of previous work to categorize or quantify autonomy in aerospace systems will be presented. In addition, a survey of perceived risks in autonomous decision-making in the context of piloted aircraft and remotely piloted or completely autonomous unmanned autonomous systems (UAS) will be presented based on interviews that were conducted with individuals from industry, academia, and government.

Adolescent pediatric decision-making: a critical reconsideration in the light of the data.

PubMed

Partridge, Brian

2014-12-01

Adolescents present a puzzle. There are foundational unclarities about how they should be regarded as decision-makers. Although superficially adolescents may appear to have mature decisional capacity, their decision-making is in many ways unlike that of adults. Despite this seemingly obvious fact, a concern for the claims of autonomy has led to the development of the legal doctrine of the mature minor. This legal construct considers adolescents, as far as possible, as equivalent to adults for the purpose of medical decision-making. The movement to support independent decision-making by adolescents through providing information to them and securing their consent apart from their parents is encouraged by those legal understandings that hold that unemancipated minors should generally be considered as possessing effective decisional capacity. Such legal structures, however, do not adequately take account of the wide variations in adolescent capacities, the immaturity of most adolescent decision-makers, or the important contributions made by parents to the development of their adolescents through parental partnering in the adolescent's decision-making. The data available indicate that in general adolescents should be regarded as apprentice decision-makers who should make decisions in collaboration with their parents until at least the age of 18. Steps should not be taken pre-emptively to isolate adolescents from the guidance of their parents. As a general rule, what Piker has referred to as "collaborative paternalism" appears most likely both to protect adolescents from their own untoward choices, while also very importantly helping them with parental guidance to develop into mature decision-makers with the capacity to make medical choices on their own.

Forced to be free? Increasing patient autonomy by constraining it

PubMed Central

2014-01-01

It is universally accepted in bioethics that doctors and other medical professionals have an obligation to procure the informed consent of their patients. Informed consent is required because patients have the moral right to autonomy in furthering the pursuit of their most important goals. In the present work, it is argued that evidence from psychology shows that human beings are subject to a number of biases and limitations as reasoners, which can be expected to lower the quality of their decisions and which therefore make it more difficult for them to pursue their most important goals by giving informed consent. It is further argued that patient autonomy is best promoted by constraining the informed consent procedure. By limiting the degree of freedom patients have to choose, the good that informed consent is supposed to protect can be promoted. PMID:22318413

Forced to be free? Increasing patient autonomy by constraining it.

PubMed

Levy, Neil

2014-05-01

It is universally accepted in bioethics that doctors and other medical professionals have an obligation to procure the informed consent of their patients. Informed consent is required because patients have the moral right to autonomy in furthering the pursuit of their most important goals. In the present work, it is argued that evidence from psychology shows that human beings are subject to a number of biases and limitations as reasoners, which can be expected to lower the quality of their decisions and which therefore make it more difficult for them to pursue their most important goals by giving informed consent. It is further argued that patient autonomy is best promoted by constraining the informed consent procedure. By limiting the degree of freedom patients have to choose, the good that informed consent is supposed to protect can be promoted.

"Women's autonomy and pregnancy care in rural India: a contextual analysis".

PubMed

Mistry, Ritesh; Galal, Osman; Lu, Michael

2009-09-01

Studies in low-income countries have shown that women's autonomy (i.e. the freedom of women to exercise their judgment in order to act for their own interests) influences a number of reproductive and child health outcomes, including the use of pregnancy care services. However, studies have not examined the full spectrum of pregnancy care services needed for safe motherhood and have not accounted for community context. This study analyzed data on women and their villages from the cross-sectional population-based National Family Health Survey-2 (1998-1999) of rural India to investigate whether women's autonomy (measured in the 3 dimensions of decision-making autonomy, permission to go out, and financial autonomy) was associated with the use of adequate prenatal, delivery and postnatal care. The findings indicate women's autonomy was associated with greater use of pregnancy care services, particularly prenatal and postnatal care. The effect of women's autonomy on pregnancy care use varied according to the region of India examined (North, East and South) such that it was most consistently associated with pregnancy care use in south India, which also had the highest level of self-reported women's autonomy. The results regarding village level factors suggest that public investment in rural economic development, primary health care access, social cohesion and basic infrastructure such as electrification and paved roads were associated with pregnancy care use. Improvements in women's autonomy and these village factors may improve healthier child bearing in rural India.

Maternal autonomy and low birth weight in India.

PubMed

Chakraborty, Priyanka; Anderson, Alex K

2011-09-01

The prevalence of low birth weight (LBW) is a major public health issue in India (30.0%) and is the highest among South-Asian countries. Maternal autonomy or the mother's status in the household indicates her decision-making power with respect to movement, finance, healthcare use, and other household activities. Evidence suggests that autonomy of the mother is significantly associated with the child's nutritional status. Although previous studies in India reported the determinants of LBW, literature on the association between mother's autonomy and birth weight are lacking. This study, therefore, aims to examine the influence of maternal autonomy on birth weight of the newborn. The study, a secondary data analysis, examined data from the 2005-2006 National Health and Family Survey (NFHS 3) of India. A maternal autonomy score was created through proximal component factor analysis and categorized as high, medium, and low autonomy levels. The main outcome variable included birth weight of the index child obtained from health cards and mother's recall. Descriptive and logistic regression analyses were performed. Results from the study indicate that 20.0% of the index children included in the analysis were born at LBW. Low maternal autonomy was an independent predictor of LBW (odds ratio [OR] 1.28, 95% confidence interval [CI] 1.07-1.53, p=0.007) after adjusting for other factors, and medium autonomy level was not significant. These findings clearly indicate the importance of empowering women in India to combat the high incidence of LBW.

“Nudge” in the clinical consultation – an acceptable form of medical paternalism?

PubMed Central

2014-01-01

Background Libertarian paternalism is a concept derived from cognitive psychology and behavioural science. It is behind policies that frame information in such a way as to encourage individuals to make choices which are in their best interests, while maintaining their freedom of choice. Clinicians may view their clinical consultations as far removed from the realms of cognitive psychology but on closer examination there are a number of striking similarities. Discussion Evidence has shown that decision making is prone to bias and not necessarily rational or logical, particularly during ill health. Clinicians will usually have an opinion about what course of action represents the patient’s best interests and thus may “frame” information in a way which “nudges” patients into making choices which are considered likely to maximise their welfare. This may be viewed as interfering with patient autonomy and constitute medical paternalism and appear in direct opposition to the tenets of modern practice. However, we argue that clinicians have a responsibility to try and correct “reasoning failure” in patients. Some compromise between patient autonomy and medical paternalism is justified on these grounds and transparency of how these techniques may be used should be promoted. Summary Overall the extremes of autonomy and paternalism are not compatible in a responsive, responsible and moral health care environment, and thus some compromise of these values is unavoidable. Nudge techniques are widely used in policy making and we demonstrate how they can be applied in shared medical decision making. Whether or not this is ethically sound is a matter of continued debate but health care professionals cannot avoid the fact they are likely to be using nudge within clinical consultations. Acknowledgment of this will lead to greater self-awareness, reflection and provide further avenues for debate on the art and science of clinical communication. PMID:24742113

Toward sensor modular autonomy for persistent land intelligence surveillance and reconnaissance (ISR)

NASA Astrophysics Data System (ADS)

Thomas, Paul A.; Marshall, Gillian; Faulkner, David; Kent, Philip; Page, Scott; Islip, Simon; Oldfield, James; Breckon, Toby P.; Kundegorski, Mikolaj E.; Clark, David J.; Styles, Tim

2016-05-01

Currently, most land Intelligence, Surveillance and Reconnaissance (ISR) assets (e.g. EO/IR cameras) are simply data collectors. Understanding, decision making and sensor control are performed by the human operators, involving high cognitive load. Any automation in the system has traditionally involved bespoke design of centralised systems that are highly specific for the assets/targets/environment under consideration, resulting in complex, non-flexible systems that exhibit poor interoperability. We address a concept of Autonomous Sensor Modules (ASMs) for land ISR, where these modules have the ability to make low-level decisions on their own in order to fulfil a higher-level objective, and plug in, with the minimum of preconfiguration, to a High Level Decision Making Module (HLDMM) through a middleware integration layer. The dual requisites of autonomy and interoperability create challenges around information fusion and asset management in an autonomous hierarchical system, which are addressed in this work. This paper presents the results of a demonstration system, known as Sensing for Asset Protection with Integrated Electronic Networked Technology (SAPIENT), which was shown in realistic base protection scenarios with live sensors and targets. The SAPIENT system performed sensor cueing, intelligent fusion, sensor tasking, target hand-off and compensation for compromised sensors, without human control, and enabled rapid integration of ISR assets at the time of system deployment, rather than at design-time. Potential benefits include rapid interoperability for coalition operations, situation understanding with low operator cognitive burden and autonomous sensor management in heterogenous sensor systems.

Case-based ethics instruction: the influence of contextual and individual factors in case content on ethical decision-making.

PubMed

Bagdasarov, Zhanna; Thiel, Chase E; Johnson, James F; Connelly, Shane; Harkrider, Lauren N; Devenport, Lynn D; Mumford, Michael D

2013-09-01

Cases have been employed across multiple disciplines, including ethics education, as effective pedagogical tools. However, the benefit of case-based learning in the ethics domain varies across cases, suggesting that not all cases are equal in terms of pedagogical value. Indeed, case content appears to influence the extent to which cases promote learning and transfer. Consistent with this argument, the current study explored the influences of contextual and personal factors embedded in case content on ethical decision-making. Cases were manipulated to include a clear description of the social context and the goals of the characters involved. Results indicated that social context, specifically the description of an autonomy-supportive environment, facilitated execution of sense making processes and resulted in greater decision ethicality. Implications for designing optimal cases and case-based training programs are discussed.

More Is Not Always Better: Intuitions About Effective Public Policy Can Lead to Unintended Consequences

PubMed Central

Peters, Ellen; Klein, William; Kaufman, Annette; Meilleur, Louise; Dixon, Anna

2013-01-01

Public policy decisions often appear based on an assumption that providing more options, more information, and greater decision-making autonomy to consumers will produce better outcomes. We examine reasons why this “more-is-better” approach exists based on the psychological literature. Although better outcomes can result from informed consumer choice, we argue that more options, information, and autonomy can also lead to unintended negative consequences. We use mostly health-related policies and guidelines from the United States and elsewhere as exemplars. We consider various psychological mechanisms that cause these unintended consequences including cognitive overload, affect, and anticipated regret, information salience and availability, and trust in governments as authoritative information providers. We also point toward potential solutions based on psychological research that may reduce the negative unintended consequences of a “more-is-better” approach. PMID:24000291

[Contraception and bioethics: between the conscience objection and the autonomy principle].

PubMed

Neyro-Bilbao, José Luis; Ángel Elorriaga, Miguel; Lira-Plascencia, Josefina

2015-02-01

In recent years, in all Western societies has changed the paradigm of the physician-patient relationship. It has passed from the principle of beneficence and abscence of malificence to the patients autonomy, recognizing their sovereignty in making clinical decisions that directly affect them. Occasionally, this principle can clash with certain bioethical aspects of conscientious objection for health professionals and providers, primarily in the areas of contraception and abortion. We discussed aspects that support one or another attitude emphasizing issues relating to contraception and induced abortion and the access and use of contraceptive methods by adolescents recognized as "mature minors" to issues of sexuality, particularly in Spain and Mexico.

Reasons for family involvement in elective surgical decision-making in Taiwan: a qualitative study.

PubMed

Lin, Mei-Ling; Huang, Chuen-Teng; Chen, Ching-Huey

2017-07-01

To inquire into the reasons for family involvement in adult patients' surgical decision-making processes from the point of view of the patients' family. Making a patient the centre of medical decision-making is essential for respecting individual's autonomy. However, in a Chinese society, family members are often deeply involved in a patient's medical decision-making. Although family involvement has long been viewed as an aspect of the Chinese culture, empirical evidence of the reasons for family involvement in medical decision-making has been lacking. A qualitative study. In order to record and examine reasons for family involvement in adult patients' surgical decision-making, 12 different family members of 12 elective surgery patients were interviewed for collecting and analysing data. Three major reasons for family involvement emerged from the data analyses: (1) to share responsibility; (2) to ensure the correctness of medical information; and (3) to safeguard the patient's well-being. These findings also reveal that culture is not the only reason for family involvement. Making decision to undergo a surgery is a tough and stressful process for a patient. Family may provide the patient with timely psychological support to assist the patient to communicate with his or her physician(s) and other medical personnel to ensure their rights. It is also found that due to the imbalanced doctor-patient power relationship, a patient may be unable, unwilling to, or even dare not, tell the whole truth about his or her illness or feelings to the medical personnel. Thus, a patient would expect his or her family to undertake such a mission during the informed consent and decision-making processes. The results of this study may provide medical professionals with relevant insights into family involvement in adult patients' surgical decision-making. © 2016 John Wiley & Sons Ltd.

Varied and principled understandings of autonomy in English law: justifiable inconsistency or blinkered moralism?

PubMed

Coggon, John

2007-09-01

Autonomy is a concept that holds much appeal to social and legal philosophers. Within a medical context, it is often argued that it should be afforded supremacy over other concepts and interests. When respect for autonomy merely requires non-intervention, an adult's right to refuse treatment is held at law to be absolute. This apparently simple statement of principle does not hold true in practice. This is in part because an individual must be found to be competent to make a valid refusal of consent to medical treatment, and capacity to decide is not an absolute concept. But further to this, I argue that there are three relevant understandings of autonomy within our society, and each can demand in differing cases that different courses of action be followed. Judges, perhaps inadvertently, have been able to take advantage of the equivocal nature of the concept to come tacitly to decisions that reflect their own moral judgments of patients or decisions made in particular cases. The result is the inconsistent application of principle. I ask whether this is an unforeseen outcome or if it reflects a wilful disregard for equal treatment in favour of silent moral judgments in legal cases. Whatever the cause, I suggest that once this practice is seen to occur, acceptable justification of it in some cases is difficult to find.

A Comparison of Japanese Management and Participative Decision Making: Implications for Organizational Communication Research.

ERIC Educational Resources Information Center

Stewart, Lea P.

In recent years, Japanese management techniques have been proclaimed by many as the salvation of American business. It would be dangerous, however, to apply these techniques to American business situations without critically examining them. Whereas Americans regard responsible individuality as a virtue and view lack of autonomy as a constraint,…

Independent Public Schools: A Move to Increased Autonomy and Devolution of Decision-Making in Western Australian Public Schools

ERIC Educational Resources Information Center

Trimmer, Karen

2013-01-01

With the increasing diversity in schools and the call for addressing specific regional needs, decentralized regulation of the education system is often proposed as an alternative approach to achieve school improvement. Researchers have often associated experimentation and risk-taking as key aspects of effective educational leadership while…

Decentralization and Participatory Decision-Making: Implementing School-Based Management in the Abbott Districts.

ERIC Educational Resources Information Center

Walker, Elaine M.

2000-01-01

This study examined issues faced during implementation of school-based management (SBM) in New Jersey's special needs or Abbott districts, using a literature review, surveys of K-12 schools, and focus groups with central office administrators. The study examined forms of SBM, team operations, local autonomy versus state power, skills required to…

New Roles for Teachers Unions? Reform Unionism in School Decentralization

ERIC Educational Resources Information Center

Donaldson, Morgaen L.; Mayer, Anysia P.; Cobb, Casey D.; LeChasseur, Kimberly; Welton, Anjale

2013-01-01

Of late, teachers unions have worked together with district management in new and notable ways. This paper examines the role of teachers unions in shaping the Together Initiative (TI), which seeks to increase autonomy and broaden decision making in urban schools in one northeastern state. In general, state-level union leaders have taken more…

Medical decision-making in children and adolescents: developmental and neuroscientific aspects.

PubMed

Grootens-Wiegers, Petronella; Hein, Irma M; van den Broek, Jos M; de Vries, Martine C

2017-05-08

Various international laws and guidelines stress the importance of respecting the developing autonomy of children and involving minors in decision-making regarding treatment and research participation. However, no universal agreement exists as to at what age minors should be deemed decision-making competent. Minors of the same age may show different levels of maturity. In addition, patients deemed rational conversation-partners as a child can suddenly become noncompliant as an adolescent. Age, context and development all play a role in decision-making competence. In this article we adopt a perspective on competence that specifically focuses on the impact of brain development on the child's decision-making process. We believe that the discussion on decision-making competence of minors can greatly benefit from a multidisciplinary approach. We adopted such an approach in order to contribute to the understanding on how to deal with children in decision-making situations. Evidence emerging from neuroscience research concerning the developing brain structures in minors is combined with insights from various other fields, such as psychology, decision-making science and ethics. Four capacities have been described that are required for (medical) decision-making: (1) communicating a choice; (2) understanding; (3) reasoning; and (4) appreciation. Each capacity is related to a number of specific skills and abilities that need to be sufficiently developed to support the capacity. Based on this approach it can be concluded that at the age of 12 children can have the capacity to be decision-making competent. However, this age coincides with the onset of adolescence. Early development of the brain's reward system combined with late development of the control system diminishes decision-making competence in adolescents in specific contexts. We conclude that even adolescents possessing capacities required for decision-making, may need support of facilitating environmental factors. This paper intends to offer insight in neuroscientific mechanisms underlying the medical decision-making capacities in minors and to stimulate practices for optimal involvement of minors. Developing minors become increasingly capable of decision-making, but the neurobiological development in adolescence affects competence in specific contexts. Adequate support should be offered in order to create a context in which minors can make competently make decisions.

Mental Capacity Law, Autonomy, and best Interests: An Argument for Conceptual and Practical Clarity in the Court of Protection

PubMed Central

2016-01-01

This article examines medical decision-making, arguing that the law, properly understood, requires where possible that equal weight be given to the wishes, feelings, beliefs, and values of patients who have, and patients who are deemed to lack, decision-making capacity. It responds critically to dominant lines of reasoning that are advanced and applied in the Court of Protection, and suggests that for patient-centred practice to be achieved, we do not need to revise the law, but do need to ensure robust interpretation and application of the law. The argument is based on conceptual analysis of the law’s framing of patients and medical decisions, and legal analysis of evolving and contemporary norms governing the best interests standard. PMID:28007810

What factors influence attending surgeon decisions about resident autonomy in the operating room?

PubMed

Williams, Reed G; George, Brian C; Meyerson, Shari L; Bohnen, Jordan D; Dunnington, Gary L; Schuller, Mary C; Torbeck, Laura; Mullen, John T; Auyang, Edward; Chipman, Jeffrey G; Choi, Jennifer; Choti, Michael; Endean, Eric; Foley, Eugene F; Mandell, Samuel; Meier, Andreas; Smink, Douglas S; Terhune, Kyla P; Wise, Paul; DaRosa, Debra; Soper, Nathaniel; Zwischenberger, Joseph B; Lillemoe, Keith D; Fryer, Jonathan P

2017-12-01

Educating residents in the operating room requires balancing patient safety, operating room efficiency demands, and resident learning needs. This study explores 4 factors that influence the amount of autonomy supervising surgeons afford to residents. We evaluated 7,297 operations performed by 487 general surgery residents and evaluated by 424 supervising surgeons from 14 training programs. The primary outcome measure was supervising surgeon autonomy granted to the resident during the operative procedure. Predictor variables included resident performance on that case, supervising surgeon history with granting autonomy, resident training level, and case difficulty. Resident performance was the strongest predictor of autonomy granted. Typical autonomy by supervising surgeon was the second most important predictor. Each additional factor led to a smaller but still significant improvement in ability to predict the supervising surgeon's autonomy decision. The 4 factors together accounted for 54% of decision variance (r = 0.74). Residents' operative performance in each case was the strongest predictor of how much autonomy was allowed in that case. Typical autonomy granted by the supervising surgeon, the second most important predictor, is unrelated to resident proficiency and warrants efforts to ensure that residents perform each procedure with many different supervisors. Copyright © 2017 Elsevier Inc. All rights reserved.

Contextualizing the Physician Charter on Professionalism in Qatar: From Patient Autonomy to Family Autonomy

PubMed Central

Ho, Ming-Jung; Alkhal, Abdullatif; Tekian, Ara; Shih, Julie; Shaw, Kevin; Wang, Chung-Hsiang; Alyafei, Khalid; Konopasek, Lyuba

2016-01-01

Background  The Physician Charter on medical professionalism has been endorsed by professional organizations worldwide, yet it is unclear if this Western framework of professionalism is applicable in non-Western countries. Objective  This study examines how physicians practicing in a Middle Eastern context perceive the terms, principles, and commitments outlined in the charter. Methods  In May 2013, the authors conducted 6 focus groups with 43 clinician-educators practicing at Hamad Medical Corporation in Doha, Qatar, to discuss the applicability of the Physician Charter in a local context. The research team coded and analyzed transcripts to identify sociocultural influences on professionalism. Results  Participants generally expressed agreement with the applicability of the charter's principles to physician professionalism in Qatar. However, 3 contextual factors (religious beliefs and practices, family-centered decision making, and multinationality) complicated the application of the core principles of patient autonomy and social justice. Islamic beliefs reinforced the importance of professional values such as altruism, but presented a barrier to the principle of self-determination for female patients. The family-centered culture in Qatar called for enlarging the scope of patient-centered decision making to include the patient's family. Qatar's multinational population prompted debate over equal treatment and how to conceptualize and implement the principle of social justice. Conclusions  Several sociocultural contexts influence the conceptualization of the principles of medical professionalism in Qatar. The findings suggest that contextual factors should be considered when developing or adopting a professionalism framework in an international setting and context. PMID:28018537

Contextualizing the Physician Charter on Professionalism in Qatar: From Patient Autonomy to Family Autonomy.

PubMed

Ho, Ming-Jung; Alkhal, Abdullatif; Tekian, Ara; Shih, Julie; Shaw, Kevin; Wang, Chung-Hsiang; Alyafei, Khalid; Konopasek, Lyuba

2016-12-01

The Physician Charter on medical professionalism has been endorsed by professional organizations worldwide, yet it is unclear if this Western framework of professionalism is applicable in non-Western countries. This study examines how physicians practicing in a Middle Eastern context perceive the terms, principles, and commitments outlined in the charter. In May 2013, the authors conducted 6 focus groups with 43 clinician-educators practicing at Hamad Medical Corporation in Doha, Qatar, to discuss the applicability of the Physician Charter in a local context. The research team coded and analyzed transcripts to identify sociocultural influences on professionalism. Participants generally expressed agreement with the applicability of the charter's principles to physician professionalism in Qatar. However, 3 contextual factors (religious beliefs and practices, family-centered decision making, and multinationality) complicated the application of the core principles of patient autonomy and social justice. Islamic beliefs reinforced the importance of professional values such as altruism, but presented a barrier to the principle of self-determination for female patients. The family-centered culture in Qatar called for enlarging the scope of patient-centered decision making to include the patient's family. Qatar's multinational population prompted debate over equal treatment and how to conceptualize and implement the principle of social justice. Several sociocultural contexts influence the conceptualization of the principles of medical professionalism in Qatar. The findings suggest that contextual factors should be considered when developing or adopting a professionalism framework in an international setting and context.

Patient and physician views of shared decision making in cancer.

PubMed

Tamirisa, Nina P; Goodwin, James S; Kandalam, Arti; Linder, Suzanne K; Weller, Susan; Turrubiate, Stella; Silva, Colleen; Riall, Taylor S

2017-12-01

Engaging patients in shared decision making involves patient knowledge of treatment options and physician elicitation of patient preferences. Our aim was to explore patient and physician perceptions of shared decision making in clinical encounters for cancer care. Patients and physicians were asked open-ended questions regarding their perceptions of shared decision making throughout their cancer care. Transcripts of interviews were coded and analysed for shared decision-making themes. At an academic medical centre, 20 cancer patients with a range of cancer diagnoses, stages of cancer and time from diagnosis, and eight physicians involved in cancer care were individually interviewed. Most physicians reported providing patients with written information. However, most patients reported that written information was too detailed and felt that the physicians did not assess the level of information they wished to receive. Most patients wanted to play an active role in the treatment decision, but also wanted the physician's recommendation, such as what their physician would choose for him/herself or a family member in a similar situation. While physicians stated that they incorporated patient autonomy in decision making, most provided data without making treatment recommendations in the format preferred by most patients. We identified several communication gaps in cancer care. While patients want to be involved in the decision-making process, they also want physicians to provide evidence-based recommendations in the context of their individual preferences. However, physicians often are reluctant to provide a recommendation that will bias the patient. © 2017 The Authors Health Expectations Published by John Wiley & Sons Ltd.

Braving Difficult Choices Alone: Children's and Adolescents' Medical Decision Making

PubMed Central

Ruggeri, Azzurra; Gummerum, Michaela; Hanoch, Yaniv

2014-01-01

Objective What role should minors play in making medical decisions? The authors examined children's and adolescents' desire to be involved in serious medical decisions and the emotional consequences associated with them. Methods Sixty-three children and 76 adolescents were presented with a cover story about a difficult medical choice. Participants were tested in one of four conditions: (1) own informed choice; (2) informed parents' choice to amputate; (3) informed parents' choice to continue a treatment; and (4) uninformed parents' choice to amputate. In a questionnaire, participants were asked about their choices, preference for autonomy, confidence, and emotional reactions when faced with a difficult hypothetical medical choice. Results Children and adolescents made different choices and participants, especially adolescents, preferred to make the difficult choice themselves, rather than having a parent make it. Children expressed fewer negative emotions than adolescents. Providing information about the alternatives did not affect participants' responses. Conclusions Minors, especially adolescents, want to be responsible for their own medical decisions, even when the choice is a difficult one. For the adolescents, results suggest that the decision to be made, instead of the agent making the decision, is the main element influencing their emotional responses and decision confidence. For children, results suggest that they might be less able than adolescents to project how they would feel. The results, overall, draw attention to the need to further investigate how we can better involve minors in the medical decision-making process. PMID:25084274

An Assessment of Direct Restorative Material Use in Posterior Teeth by American and Canadian Pediatric Dentists: III. Preferred Level of Participation in Decision-making.

PubMed

Varughese, Rae E; Andrews, Paul; Sigal, Michael J; Azarpazhooh, Amir

2016-11-15

The purpose of this study was to assess Canadian and American pediatric dentists' preferred level of participation in clinical decision-making. A web-based survey was used to collect the opinions of all active Royal College of Dentists of Canada members and American Academy of Pediatric Dentistry members on the use of direct restorative materials in posterior teeth (n equals 4,648; 19.3 percent response rate). The main survey also included a domain to elicit participants' preferred role in clinical decision-making, ranging from an active role (the dentist takes the primary role in decision-making while considering patients/caregivers opinions) to a passive role (the dentist prefers to have the patient guide the decision-making). Bivariate and multivariate analyses for the preferred role and its predictor were performed (two-tailed P<0.05). Fifty-eight percent of participants preferred an active role. The passive role was chosen three times more by those who worked in a hospital-based setting (odds ratio [OR] equals 3.15, 95 percent confidence interval [CI] equals 1.13 to 8.79) or a university-based setting versus a combined setting (OR equals 3.61, 95 percent CI equals 1.11 to 11.77). The majority of participants preferred an active role in decision-making, a role that may not be consistent with a patient-centered practice that emphasizes patient autonomy in decision-making.

Patients’ priorities for treatment decision making during periods of incapacity: quantitative survey

PubMed Central

RID, ANNETTE; WESLEY, ROBERT; PAVLICK, MARK; MAYNARD, SHARON; ROTH, KATALIN; WENDLER, DAVID

2017-01-01

Objective Clinical practice aims to respect patient autonomy by basing treatment decisions for incapacitated patients on their own preferences. Yet many patients do not complete an advance directive, and those who do frequently just designate a family member to make decisions for them. This finding raises the concern that clinical practice may be based on a mistaken understanding of patient priorities. The present study aimed to collect systematic data on how patients prioritize the goals of treatment decision making. Method We employed a self-administered, quantitative survey of patients in a tertiary care center. Results Some 80% or more of the 1169 respondents (response rate = 59.8%) ranked six of eight listed goals for treatment decision making as important. When asked which goal was most important, 38.8% identified obtaining desired or avoiding unwanted treatments, 20.0% identified minimizing stress or financial burden on their family, and 14.6% identified having their family help to make treatment decisions. No single goal was designated as most important by 25.0% of participants. Significance of Results Patients endorsed three primary goals with respect to decision making during periods of incapacity: being treated consistent with their own preferences; minimizing the burden on their family; and involving their family in the decision-making process. However, no single goal was prioritized by a clear majority of patients. These findings suggest that advance care planning should not be limited to documenting patients’ treatment preferences. Clinicians should also discuss and document patients’ priorities for how decisions are to be made. Moreover, future research should evaluate ways to modify current practice to promote all three of patients primary goals for treatment decision making. PMID:25273677

Patients' priorities for treatment decision making during periods of incapacity: quantitative survey.

PubMed

Rid, Annette; Wesley, Robert; Pavlick, Mark; Maynard, Sharon; Roth, Katalin; Wendler, David

2015-10-01

Clinical practice aims to respect patient autonomy by basing treatment decisions for incapacitated patients on their own preferences. Yet many patients do not complete an advance directive, and those who do frequently just designate a family member to make decisions for them. This finding raises the concern that clinical practice may be based on a mistaken understanding of patient priorities. The present study aimed to collect systematic data on how patients prioritize the goals of treatment decision making. We employed a self-administered, quantitative survey of patients in a tertiary care center. Some 80% or more of the 1169 respondents (response rate = 59.8%) ranked six of eight listed goals for treatment decision making as important. When asked which goal was most important, 38.8% identified obtaining desired or avoiding unwanted treatments, 20.0% identified minimizing stress or financial burden on their family, and 14.6% identified having their family help to make treatment decisions. No single goal was designated as most important by 25.0% of participants. Patients endorsed three primary goals with respect to decision making during periods of incapacity: being treated consistent with their own preferences; minimizing the burden on their family; and involving their family in the decision-making process. However, no single goal was prioritized by a clear majority of patients. These findings suggest that advance care planning should not be limited to documenting patients' treatment preferences. Clinicians should also discuss and document patients' priorities for how decisions are to be made. Moreover, future research should evaluate ways to modify current practice to promote all three of patients primary goals for treatment decision making.

Women's autonomy and reproductive health care utilisation: empirical evidence from Tajikistan.

PubMed

Kamiya, Yusuke

2011-10-01

Women's autonomy is widely considered to be a key to improving maternal health in developing countries, whereas there is no consistent empirical evidence to support this claim. This paper examines whether or not and how women's autonomy within the household affects the use of reproductive health care, using a household survey data from Tajikistan. Estimation is performed by the bivariate probit model whereby woman's use of health services and the level of women's autonomy are recursively and simultaneously determined. The data is from a sample of women aged 15-49 from the Tajikistan Living Standard Measurement Survey 2007. Women's autonomy as measured by women's decision-making on household financial matters increase the likelihood that a woman receives antenatal and delivery care, whilst it has a negative effect on the probability of attending to four or more antenatal consultations. The hypothesis that women's autonomy and reproductive health care utilisation are independently determined is rejected for most of the estimation specifications, indicating the importance of taking into account the endogenous nature of women's autonomy when assessing its effect on health care use. The empirical results reconfirm the assertion that women's status within the household is closely linked to reproductive health care utilisation in developing countries. Policymakers therefore need not only to implement not only direct health interventions but also to focus on broader social policies which address women's empowerment. Copyright © 2011 Elsevier Ireland Ltd. All rights reserved.

Observed and perceived parental overprotection in relation to psychosocial adjustment in preadolescents with a physical disability: the mediational role of behavioral autonomy.

PubMed

Holmbeck, Grayson N; Johnson, Sharon Z; Wills, Karen E; McKernon, Wendy; Rose, Brigid; Erklin, Shannon; Kemper, Therese

2002-02-01

The purpose of this study was to tes a mediational model of associations between parental overprotectiveness (OP), behavioral autonomy. and psychosocial adjustment in 68 families with 8- and 9-year-old preadolescents with spipa bifida and a demographically matched sample of 68 families with able-bodied children. Measures included questionnaire and observational assessments of parental OP; parent and child reports of behavioral autonomy; and parent, child, and teacher reports of preadolescent adjustment. On the basis of both questionnaire and observational measures of OP, mothers and fathers of children with spina bifida were significantly more overprotective than their counterparts in the able-bodied sample, although this group difference was partially mediated by children's cognitive ability. Across samples, mothers were more likely to be overprotective than fathers. Both questionnaire and observational measures of parental OP were associated with lower levels of preadolescent decision-making autonomy as well as with parents being less willing to grant autonomy to their offspring in the future. For the questionnaire measure of OP, and only for the spina bifida sample. the mediational model was supported such that parental OP was associated with less behavioral autonomy, which was, in turn, associated with more externalizing problems. Findings are discussed in relation to the literature on parenting, autonomy development, and pediatric psychology.

Decision aids for patients.

PubMed

Lenz, Matthias; Buhse, Susanne; Kasper, Jürgen; Kupfer, Ramona; Richter, Tanja; Mühlhauser, Ingrid

2012-06-01

Patients want to be more involved in medical decision-making. To this end, some decision aids are now available. We present an overview of this subject, in which we explain the terms "shared decision-making", "decision aid", and "evidence-based patient information" and survey information on the available decision aids in German and other languages on the basis of a literature search in MEDLINE, EMBASE and PsycInfo and a current Cochrane Review. We also searched the Internet for providers of decision aids in Germany. Decision aids exist in the form of brochures, decision tables, videos, and computer programs; they address various topics in the prevention, diagnosis, and treatment of disease. They typically contain information on the advantages and disadvantages of the available options, as well as guidance for personal decision-making. They can be used alone or as a part of structured counseling or patient education. Minimal quality standards include an adequate evidence base, completeness, absence of bias, and intelligibility. Our search revealed 12 randomized controlled trials (RCTs) of decision aids in German and 106 RCTs of decision aids in other languages. These trials studied the outcome of the use of decision aids not just with respect to clinical developments, but also with respect to patient knowledge, adherence to treatment regimens, satisfaction, involvement in decision-making, autonomy preference, and decisional conflicts. Only a small fraction of the available decision aids were systematically developed and have been subjected to systematic evaluation. Patients are still not receiving the help in decision-making to which medical ethics entitles them. Structures need to be put in place for the sustainable development, evaluation and implementation of high-quality decision aids.

Maternity care providers' perceptions of women's autonomy and the law.

PubMed

Kruske, Sue; Young, Kate; Jenkinson, Bec; Catchlove, Ann

2013-04-04

Like all health care consumers, pregnant women have the right to make autonomous decisions about their medical care. However, this right has created confusion for a number of maternity care stakeholders, particularly in situations when a woman's decision may lead to increased risk of harm to the fetus. Little is known about care providers' perceptions of this situation, or of their legal accountability for outcomes experienced in pregnancy and birth. This paper examined maternity care providers' attitudes and beliefs towards women's right to make autonomous decisions during pregnancy and birth, and the legal responsibility of professionals for maternal and fetal outcomes. Attitudes and beliefs around women's autonomy and health professionals' legal accountability were measured in a sample of 336 midwives and doctors from both public and private health sectors in Queensland, Australia, using a questionnaire available online and in paper format. Student's t-test was used to compare midwives' and doctors' responses. Both maternity care professionals demonstrated a poor understanding of their own legal accountability, and the rights of the woman and her fetus. Midwives and doctors believed the final decision should rest with the woman; however, each also believed that the needs of the woman may be overridden for the safety of the fetus. Doctors believed themselves to be ultimately legally accountable for outcomes experienced in pregnancy and birth, despite the legal position that all health care professionals are responsible only for adverse outcomes caused by their own negligent actions. Interprofessional differences were evident, with midwives and doctors significantly differing in their responses on five of the six items. Maternity care professionals inconsistently supported women's right to autonomous decision making during pregnancy and birth. This finding is further complicated by care providers' poor understanding of legal accountability for outcomes experienced in pregnancy and birth. The findings of this study support the need for guidelines on decision making in pregnancy and birth for maternity care professionals, and for recognition of interprofessional differences in beliefs around the rights of the woman, her fetus and health professionals in order to facilitate collaborative practice.

Medical Decision-Making Among Adolescents with Neonatal Brachial Plexus Palsy and their Families: A Qualitative Study

PubMed Central

Squitieri, Lee; Larson, Bradley P.; Chang, Kate W-C; Yang, Lynda J-S.; Chung, Kevin C.

2016-01-01

Background Elective surgical management of neonatal brachial plexus palsy is complex, variable, and often individualized. Little is known about the medical decision-making process among adolescents with NBPP and their families faced with making complex treatment decisions. The experiences of these patients and their parents were analyzed to identify key factors in the decision-making process. Patients and Methods Eighteen adolescents with residual NBPP deficits between the ages of 10 to 17 years along with their parents were included in the present study. A qualitative research design was employed involving the use of separate one hour, in person, semi-structured interviews, which were audio recorded and transcribed. Grounded theory was applied by two independent members of the research team to identify recurrent themes and ultimately create a codebook that was then applied to the data. Results Medical decision-making among adolescents with NBPP and their families is multifaceted and individualized, comprised of both patient and system dependent factors. Four codes pertaining to the medical decision-making process were identified: 1) knowledge acquisition, 2) multidisciplinary care, 3) adolescent autonomy, and 4) patient expectations and treatment desires. Overall, parental decision-making was heavily influenced by system dependent factors, while adolescents largely based their medical decision-making on individual treatment desires to improve function and/or aesthetics. Conclusions There are many areas for improving the delivery of information and health care organization among adolescents with NBPP and their families. We recommend the development of educational interdisciplinary programs and decision aids containing evidence-based management guidelines targeted toward primary care providers and patients. We believe that a computer-based learning module may provide the best avenue to achieve maximum penetrance and convenience of information sharing. PMID:23714810

Rethinking autonomy in the context of prenatal screening decision-making.

PubMed

García, Elisa; Timmermans, Danielle R M; van Leeuwen, Evert

2008-02-01

Answering the question: Does the offer of prenatal screening impede women in making autonomous choices? Semi-structured interviews with 59 women to whom a prenatal screening test was offered and who were in the process of taking a decision. Women described the offer as confronting but expressed a positive attitude towards screening and considered the offer as an opportunity for making up their minds about testing. Participants stated that they took decisions freely to follow their individual perspectives. Nevertheless, they preferred to share the responsibility of taking decisions, and its consequences for other family members, with their partner and close persons. The active offer of an unsolicited prenatal test need not be considered as an impediment for making an autonomous choice. The moral significance of prenatal testing is inseparably bound with the social context in which it is practiced. Influence from other persons and emotional reactions due to the test offer can be interpreted as supportive for making a choice. In clinical practice, testing should be timely offered in order to give women the opportunity of discussing their views with significant others. Caregivers should care for the emotions experienced by women so as to help them decide according to their values.

Surgical Informed Consent Process in Neurosurgery

PubMed Central

Park, Jaechan; Park, Hyojin

2017-01-01

The doctrine of informed consent, as opposed to medical paternalism, is intended to facilitate patient autonomy by allowing patient participation in the medical decision-making process. However, regrettably, the surgical informed consent (SIC) process is invariably underestimated and reduced to a documentary procedure to protect physicians from legal liability. Moreover, residents are rarely trained in the clinical and communicative skills required for the SIC process. Accordingly, to increase professional awareness of the SIC process, a brief history and introduction to the current elements of SIC, the obstacles to patient autonomy and SIC, benefits and drawbacks of SIC, planning of an optimal SIC process, and its application to cases of an unruptured intracranial aneurysm are all presented. Optimal informed consent process can provide patients with a good comprehension of their disease and treatment, augmented autonomy, a strong therapeutic alliance with their doctors, and psychological defenses for coping with stressful surgical circumstances. PMID:28689386

The Ethics of Organ Donor Registration Policies: Nudges and Respect for Autonomy.

PubMed

MacKay, Douglas; Robinson, Alexandra

2016-11-01

Governments must determine the legal procedures by which their residents are registered, or can register, as organ donors. Provided that governments recognize that people have a right to determine what happens to their organs after they die, there are four feasible options to choose from: opt-in, opt-out, mandated active choice, and voluntary active choice. We investigate the ethics of these policies' use of nudges to affect organ donor registration rates. We argue that the use of nudges in this context is morally problematic. It is disrespectful of people's autonomy to take advantage of their cognitive biases since doing so involves bypassing, not engaging, their rational capacities. We conclude that while mandated active choice policies are not problem free-they are coercive, after all-voluntary active choice, opt-in, and opt-out policies are potentially less respectful of people's autonomy since their use of nudges could significantly affect people's decision making.

[Nurses' autonomy and vulnerability in the Nursing Assistance Systematization practice].

PubMed

Menezes, Silvia Regina Tamae; Priel, Margareth Rose; Pereira, Luciane Lucio

2011-08-01

The objective of this study was to recognize the autonomy and vulnerability of nurses in the implementation of the Sistema da Assistência de Enfermagem (SAE) Nursing Care System through an integrative literature review, using content analysis. A survey was conducted, and 40 articles published between 1998 and 2008 were selected based on their relevance. Results showed two main categories of meaning: Benefits associated to the SAE practice (to patients, to the profession and to the institution) and Determinants for the Implementation of SAE (nurse's competence, training and education, record-instruments, infrastructure and collective sharing-construction). From the integration of the two categories, the highlights were the autonomy in acting with freedom and responsibility, science-based decision-making, and being valued for their social work, as well as the vulnerability expressed by interpersonal relationships, the wear generated by professional stress and the risk inherent to the service.

Principal Self-Government and Subjectification: The Exercise of Principal Autonomy in the Western Australian Independent Public Schools Programme

ERIC Educational Resources Information Center

Gobby, Brad

2013-01-01

The launch of the Independent Public Schools (IPS) programme in Western Australia (WA) in 2010 reflects the neoliberal policy discourse of decentralisation and school self-management sweeping across many of the world's education systems. IPS provides WA state school principals with decision-making authority in a range of areas, including the…

Evolution of Patient Decision-Making Regarding Medical Treatment of Rheumatoid Arthritis.

PubMed

Mathews, Alexandra L; Coleska, Adriana; Burns, Patricia B; Chung, Kevin C

2016-03-01

The migration of health care toward a consumer-driven system favors increased patient participation during the treatment decision-making process. Patient involvement in treatment decision discussions has been linked to increased treatment adherence and patient satisfaction. Previous studies have quantified decision-making styles of patients with rheumatoid arthritis (RA); however, none of them have considered the evolution of patient involvement after living with RA for many years. We conducted a qualitative study to determine the decision-making model used by long-term RA patients, and to describe the changes in their involvement over time. Twenty participants were recruited from the ongoing Silicone Arthroplasty in Rheumatoid Arthritis study. Semistructured interviews were conducted and data were analyzed using grounded theory methodology. Nineteen out of 20 participants recalled using the paternalistic decision-making (PDM) model immediately following their diagnosis. Fourteen of the 19 participants who initially used PDM evolved to shared decision-making (SDM). Participants attributed the change in involvement to the development of a trusting relationship with their physician, as well as to becoming educated about the disease. When initially diagnosed with RA, patients may let their physician decide on the best treatment course. However, over time patients may evolve to exercise a more collaborative role. Physicians should understand that even within SDM, each patient can demonstrate a varied amount of autonomy. It is up to the physician to have a discussion with each patient to determine his or her desired level of involvement. © 2016, American College of Rheumatology.

Ethics of End of Life Decisions in Pediatrics: A Narrative Review of the Roles of Caregivers, Shared Decision-Making, and Patient Centered Values.

PubMed

Santoro, Jonathan D; Bennett, Mariko

2018-04-26

Background: This manuscript reviews unique aspects of end of life decision-making in pediatrics. Methods: A narrative literature review of pediatric end of life issues was performed in the English language. Results: While a paternalistic approach is typically applied to children with life-limiting medical prognoses, the cognitive, language, and physical variability in this patient population is wide and worthy of review. In end of life discussions in pediatrics, the consideration of a child’s input is often not reviewed in depth, although a shared decision-making model is ideal for use, even for children with presumed limitations due to age. This narrative review of end of life decision-making in pediatric care explores nomenclature, the introduction of the concept of death, relevant historical studies, limitations to the shared decision-making model, the current state of end of life autonomy in pediatrics, and future directions and needs. Although progress is being made toward a more uniform and standardized approach to care, few non-institutional protocols exist. Complicating factors in the lack of guidelines include the unique facets of pediatric end of life care, including physical age, paternalism, the cognitive and language capacity of patients, subconscious influencers of parents, and normative values of death in pediatrics. Conclusions: Although there have been strides in end of life decision-making in pediatrics, further investigation and research is needed in this field.

[Decision Making Experience on Breast Reconstruction for Women with Breast Cancer].

PubMed

Yi, Myungsun; Joung, Woo Joung; Park, Eun Young; Kwon, Eun Jin; Kim, Haejin; Seo, Ji Young

2016-12-01

The purpose of this study was to explore decision making experiences of Korean women with breast cancer who underwent breast reconstruction with/after a mastectomy. Data were collected during 2015-2016 through individual in-depth interviews with 10 women who had both mastectomy and breast reconstruction, and analyzed using phenomenological method to identify essential themes on experiences of making a decision to have breast reconstruction. Five theme clusters emerged. First, "expected loss of sexuality and discovery of autonomy" illustrates various aims of breast reconstruction. Second, "holding tight to the reputation of doctors amid uncertainty" specifies the importance of a trust relationship with their physician despite a lack of information. Third, "family members to step back in position" describes support or opposition from family members in the decision making process. Fourth, "bewilderment due to the paradox of appearance-oriented views" illustrates paradoxical environment, resulting in confusion and anger. Lastly, "decision to be made quickly with limited time to oneself" describes the crazy whirling process of decision making. Findings highlight aims, worries, barriers, and facilitators that women with breast cancer experience when making a decision about breast reconstruction. Deciding on breast reconstruction was not only a burden for women in a state of shock with a diagnosis of breast cancer, but also an opportunity to decide to integrate their body, femininity, and self which might be wounded from a mastectomy. These findings will help oncology professionals provide effective educational counselling before the operation to promote higher satisfaction after the operation.

Conflicts of interest: research and clinical care.

PubMed

Morris, John C

1994-01-01

Conflicts of interest and other ethical dilemmas occur in Alzheimer disease (AD) patient care and research but often are underrecognized by physicians. One or more bioethical principles of autonomy, confidentiality, truth telling, beneficence, and justice, which apply to demented individuals as they do to other patients, may conflict in everyday clinical situations. For example, when demented patients wish to continue driving, autonomy (the patient's right to self-determination) conflicts with beneficence (the duty to promote the patient's welfare). Cognitively impaired patients depend on others for ethical decision making in the resolution of these dilemmas. It is essential that clinicians and investigators involved in the decision-making process do so without bias or conflict of interest. Full disclosure of financial interests increasingly is an accepted requirement in the conduct of biomedical research. In AD, less obvious potential conflicts of interest arise when physicians recruit their patients for antidementia drug trials sponsored by a pharmaceutical company (that provides the physician with research funding) or when investigators fail to acknowledge the patient's withdrawal of assent when attempting to complete a research protocol. The recognition of both financial and nonfinancial conflicts should lead to measures to reduce bias, which in turn will improve the integrity of research findings and promote patient welfare.

The anthropological approach challenges the conventional approach to bioethical dilemmas: a Kenyan Maasai perspective.

PubMed

Sharif, Thikra; Bugo, John

2015-06-01

The cultural background, religion and societal norms have a huge influence on the decision making process for physicians, patients and their families, when faced with medical ethical dilemmas. While the medical professionals, through their training, can rely on the principles of autonomy, justice, beneficence and non-maleficence to guide them, the patients can only draw from their personal and cultural experiences. To explore some of the challenges that face physicians when presented with ethical dilemmas. A review of the literature on the principles of medical ethics and the cultural practices of the Maasai tribe, as well as, interview, interaction and observation of the patients and family during patient. management. In the Maasai community in Kenya, where family is the center of all attention and decision-making, the listed ethical principles and rules have a very different understanding of the self-determination, and autonomy becomes collective rather than individualistic. Medical practitioners when faced with ethical medical dilemmas are neither comfortable in adopting the conventional bioethical guidelines, nor in offering a health care purely based on cultural and historical practice. In our set up, developing culturally relevant principles of bioethics appears to be the most effective solution in addressing medical ethical dilemmas.

Perspectives of decision-making in requests for euthanasia: a qualitative research among patients, relatives and treating physicians in the Netherlands.

PubMed

Dees, Marianne K; Vernooij-Dassen, Myrra J; Dekkers, Wim J; Elwyn, Glyn; Vissers, Kris C; van Weel, Chris

2013-01-01

Euthanasia has been legally performed in the Netherlands since 2002. Respect for patient's autonomy is the underpinning ethical principal. However, patients have no right to euthanasia, and physicians have no obligation to provide it. Although over 3000 cases are conducted per year in the Netherlands, there is little known about how decision-making occurs and no guidance to support this difficult aspect of clinical practice. To explore the decision-making process in cases where patients request euthanasia and understand the different themes relevant to optimise this decision-making process. A qualitative thematic analysis of interviews with patients making explicit requests for euthanasia, most-involved relative(s) and treating physician. Thirty-two cases, 31 relatives and 28 treating physicians. Settings were patients' and relatives' homes and physicians' offices. Five main themes emerged: (1) initiation of sharing views and values about euthanasia, (2) building relationships as part of the negotiation, (3) fulfilling legal requirements, (4) detailed work of preparing and performing euthanasia and (5) aftercare and closing. A patient's request for euthanasia entails a complex process that demands emotional work by all participants. It is characterised by an intensive period of sharing information, relationship building and negotiation in order to reach agreement. We hypothesise that making decisions about euthanasia demands a proactive approach towards participants' preferences and values regarding end of life, towards the needs of relatives, towards the burden placed on physicians and a careful attention to shared decision-making. Future research should address the communicational skills professionals require for such complex decision-making.

Evaluating the Quality of Patient Decision-Making Regarding Post-Acute Care.

PubMed

Burke, Robert E; Jones, Jacqueline; Lawrence, Emily; Ladebue, Amy; Ayele, Roman; Leonard, Chelsea; Lippmann, Brandi; Matlock, Daniel D; Allyn, Rebecca; Cumbler, Ethan

2018-05-01

Despite a national focus on post-acute care brought about by recent payment reforms, relatively little is known about how hospitalized older adults and their caregivers decide whether to go to a skilled nursing facility (SNF) after hospitalization. We sought to understand to what extent hospitalized older adults and their caregivers are empowered to make a high-quality decision about utilizing an SNF for post-acute care and what contextual or process elements led to satisfaction with the outcome of their decision once in SNF. Qualitative inquiry using the Ottawa Decision Support Framework (ODSF), a conceptual framework that describes key components of high-quality decision-making. Thirty-two previously community-dwelling older adults (≥ 65 years old) and 22 caregivers interviewed at three different hospitals and three skilled nursing facilities. We used key components of the ODSF to identify elements of context and process that affected decision-making and to what extent the outcome was characteristic of a high-quality decision: informed, values based, and not associated with regret or blame. The most important contextual themes were the presence of active medical conditions in the hospital that made decision-making difficult, prior experiences with hospital readmission or SNF, relative level of caregiver support, and pressure to make a decision quickly for which participants felt unprepared. Patients described playing a passive role in the decision-making process and largely relying on recommendations from the medical team. Patients commonly expressed resignation and a perceived lack of choice or autonomy, leading to dissatisfaction with the outcome. Understanding and intervening to improve the quality of decision-making regarding post-acute care supports is essential for improving outcomes of hospitalized older adults. Our results suggest that simply providing information is not sufficient; rather, incorporating key contextual factors and improving the decision-making process for both patients and clinicians are also essential.

Who Should Decide How Machines Make Morally Laden Decisions?

PubMed

Martin, Dominic

2017-08-01

Who should decide how a machine will decide what to do when it is driving a car, performing a medical procedure, or, more generally, when it is facing any kind of morally laden decision? More and more, machines are making complex decisions with a considerable level of autonomy. We should be much more preoccupied by this problem than we currently are. After a series of preliminary remarks, this paper will go over four possible answers to the question raised above. First, we may claim that it is the maker of a machine that gets to decide how it will behave in morally laden scenarios. Second, we may claim that the users of a machine should decide. Third, that decision may have to be made collectively or, fourth, by other machines built for this special purpose. The paper argues that each of these approaches suffers from its own shortcomings, and it concludes by showing, among other things, which approaches should be emphasized for different types of machines, situations, and/or morally laden decisions.

Nudging and informed consent.

PubMed

Cohen, Shlomo

2013-01-01

Libertarian paternalism's notion of "nudging" refers to steering individual decision making so as to make choosers better off without breaching their free choice. If successful, this may offer an ideal synthesis between the duty to respect patient autonomy and that of beneficence, which at times favors paternalistic influence. A growing body of literature attempts to assess the merits of nudging in health care. However, this literature deals almost exclusively with health policy, while the question of the potential benefit of nudging for the practice of informed consent has escaped systematic analysis. This article focuses on this question. While it concedes that nudging could amount to improper exploitation of cognitive weaknesses, it defends the practice of nudging in a wide range of other conditions. The conclusion is that, when ethically legitimate, nudging offers an important new paradigm for informed consent, with a special potential to overcome the classical dilemma between paternalistic beneficence and respect for autonomy.

Capacity for Preferences: Respecting Patients with Compromised Decision-Making.

PubMed

Wasserman, Jason Adam; Navin, Mark Christopher

2018-05-01

When a patient lacks decision-making capacity, then according to standard clinical ethics practice in the United States, the health care team should seek guidance from a surrogate decision-maker, either previously selected by the patient or appointed by the courts. If there are no surrogates willing or able to exercise substituted judgment, then the team is to choose interventions that promote a patient's best interests. We argue that, even when there is input from a surrogate, patient preferences should be an additional source of guidance for decisions about patients who lack decision-making capacity. Our proposal builds on other efforts to help patients who lack decision-making capacity provide input into decisions about their care. For example, "supported," "assisted," or "guided" decision-making models reflect a commitment to humanistic patient engagement and create a more supportive process for patients, families, and health care teams. But often, they are supportive processes for guiding a patient toward a decision that the surrogate or team believes to be in the patient's medical best interests. Another approach holds that taking seriously the preferences of such a patient can help surrogates develop a better account of what the patient's treatment choices would have been if the patient had retained decision-making capacity; the surrogate then must try to integrate features of the patient's formerly rational self with the preferences of the patient's currently compromised self. Patients who lack decision-making capacity are well served by these efforts to solicit and use their preferences to promote best interests or to craft would-be autonomous patient images for use by surrogates. However, we go further: the moral reasons for valuing the preferences of patients without decision-making capacity are not reducible to either best-interests or (surrogate) autonomy considerations but can be grounded in the values of liberty and respect for persons. This has important consequences for treatment decisions involving these vulnerable patients. © 2018 The Hastings Center.

[The notion of decision making capacity in medical and legal practice].

PubMed

Bórquez E, Gladys; Raineri B, Gina; Horwitz C, Nina; Huepe O, Gabriela

2007-09-01

The relationship between patients and health professionals emphasizes deliberation and joint decision making, that derives in the informed consent. To evaluate decision making of patients in health care and to identify the notion of capacity for decision making, according to lawyers and physicians. A semi-structured interview about procedures to assess decision making capacity was applied to 27 selected physicians and lawyers, considering their experience in this area. A qualitative analysis of answers was performed. Several differences were observed between physicians and lawyers, probably originated in their respective disciplines as well as the context of their professional practice. For physicians the notion of capacity is associated to comprehension of the information, it is not absolute, and it must consider the intellectual maturity of the teenager and the autonomy of the elderly. This evaluation is frequently performed in the clinical interview and standardized protocols do not exist. For lawyers, capacity is established by age and is associated to rights and obligations, as determined by law. When it is assessed by experts, including physicians, it becomes evidence. These professionals assume that experts will use standardized assessment instruments. Capacity has significance in the legal system. Since there are substantial consequences when a person is deemed incompetent, it is necessary to distinguish between health capacity and legal capacity, and to inverted exclamation markink the informed consent with the fundamental rights of citizens, such as taking decisions about our own health.

Beyond the Futility Argument: The Fair Process Approach and Time-Limited Trials for Managing Dialysis Conflict

PubMed Central

2013-01-01

Summary Futility is an ancient concept arising from Greek mythology that was resurrected for its medical application in the 1980s with the proliferation of many lifesaving technologies, including dialysis and renal transplantation. By that time, the domineering medical paternalism that characterized the pre-1960s physician–patient relationship morphed into assertive patient autonomy, and some patients began to claim the right to demand aggressive, high-technology interventions, despite physician disapproval. To counter this power struggle, the establishment of a precise definition of futility offered hope for a futility policy that would allow physicians to justify withholding or withdrawing treatment, despite patient and family objections. This article reviews the various attempts made to define medical futility and describes their limited applicability to dialysis. When futility concerns arise, physicians should recognize the opportunity to address conflict, using best practice communication skills. Physicians would also benefit from understanding the ethical principles of respect for patient autonomy, beneficence, nonmaleficence, justice, and professional integrity that underlie medical decision-making. Also reviewed is the use of a fair process approach or time-limited trial when conflict resolution cannot be achieved. These topics are addressed in the Renal Physician Association’s clinical practice guideline Shared Decision-Making in the Appropriate Initiation and Withdrawal from Dialysis, with which nephrologists should be well versed. A case presentation of intractable calciphylaxis in a new dialysis patient illustrates the pitfalls of physicians not fully appreciating the ethics of medical decision-making and failing to use effective conflict management approaches in the clinical practice guideline. PMID:23868900

Challenges faced by nurses in managing pain in a critical care setting.

PubMed

Subramanian, Pathmawathi; Allcock, Nick; James, Veronica; Lathlean, Judith

2012-05-01

To explore nurses' challenges in managing pain among ill patients in critical care. Pain can lead to many adverse medical consequences and providing pain relief is central to caring for ill patients. Effective pain management is vital since studies show patients admitted to critical care units still suffer from significant levels of acute pain. The effective delivery of care in clinical areas remains a challenge for nurses involved with care which is dynamic and constantly changing in critically ill. Qualitative prospective exploratory design. This study employed semi structured interviews with nurses, using critical incident technique. Twenty-one nurses were selected from critical care settings from a large acute teaching health care trust in the UK. A critical incident interview guide was constructed from the literature and used to elicit responses. Framework analysis showed that nurses perceived four main challenges in managing pain namely lack of clinical guidelines, lack of structured pain assessment tool, limited autonomy in decision making and the patient's condition itself. Nurses' decision making and pain management can influence the quality of care given to critically ill patients. It is important to overcome the clinical problems that are faced when dealing with pain experience. There is a need for nursing education on pain management. Providing up to date and practical strategies may help to reduce nurses' challenges in managing pain among critically ill patients. Broader autonomy and effective decision making can be seen as beneficial for the nurses besides having a clearer and structured pain management guidelines. © 2011 Blackwell Publishing Ltd.

Beyond the futility argument: the fair process approach and time-limited trials for managing dialysis conflict.

PubMed

Rinehart, Ann

2013-11-01

Futility is an ancient concept arising from Greek mythology that was resurrected for its medical application in the 1980s with the proliferation of many lifesaving technologies, including dialysis and renal transplantation. By that time, the domineering medical paternalism that characterized the pre-1960s physician-patient relationship morphed into assertive patient autonomy, and some patients began to claim the right to demand aggressive, high-technology interventions, despite physician disapproval. To counter this power struggle, the establishment of a precise definition of futility offered hope for a futility policy that would allow physicians to justify withholding or withdrawing treatment, despite patient and family objections. This article reviews the various attempts made to define medical futility and describes their limited applicability to dialysis. When futility concerns arise, physicians should recognize the opportunity to address conflict, using best practice communication skills. Physicians would also benefit from understanding the ethical principles of respect for patient autonomy, beneficence, nonmaleficence, justice, and professional integrity that underlie medical decision-making. Also reviewed is the use of a fair process approach or time-limited trial when conflict resolution cannot be achieved. These topics are addressed in the Renal Physician Association's clinical practice guideline Shared Decision-Making in the Appropriate Initiation and Withdrawal from Dialysis, with which nephrologists should be well versed. A case presentation of intractable calciphylaxis in a new dialysis patient illustrates the pitfalls of physicians not fully appreciating the ethics of medical decision-making and failing to use effective conflict management approaches in the clinical practice guideline.

Exploring older and younger adults' preferences for health information and participation in decision making using the Health Information Wants Questionnaire (HIWQ).

PubMed

Xie, Bo; Wang, Mo; Feldman, Robert; Zhou, Le

2014-12-01

Existing measurements of patient preferences cover only a limited range of health information and participation in decision making. A broader approach is necessary to understand the breadth and variations in patient preferences. To explore the breadth and variances in patient preferences for health information and participation in decision making and to understand the relationship between age and each type of preference. The Health Information Wants Questionnaire (HIWQ) was administered during May-December 2010 to gather data about the information and corresponding decision-making autonomy participants would want in seven areas: diagnosis, treatment, laboratory tests, self-care, complementary and alternative medicine (CAM), psychosocial factors and health-care providers. A large state university, public libraries and senior centres in Maryland, USA. A convenience sample of 438 individuals, including 226 undergraduates (mean age = 20; SD = 2.15) and 212 community-dwelling older adults (mean age = 72; SD = 9.00). Ratings on the information and decision-making items of the HIWQ. Participants expressed higher levels of preference for information than for participation in decision making on six of seven subscales. On the psychosocial subscale, they expressed stronger desire for participation in decision making than for information. Age had no predictive effect on the overall preferences or specific preferences for information and participation in decision making about standard treatments and CAM. The predictive effect of age on the other types of preferences varied significantly. Physicians should take into account the breadth and variations in patient preferences. The predictive effect of age on patient preferences varied depending on the specific area of preferences. © 2012 John Wiley & Sons Ltd.

Choosing an out-of-hospital birth centre: Exploring women's decision-making experiences.

PubMed

Wood, Rebecca J; Mignone, Javier; Heaman, Maureen I; Robinson, Kristine J; Roger, Kerstin Stieber

2016-08-01

the primary objective for this study was to explore women's experiences of choosing to plan a birth at an out-of-hospital birth centre. We sought to understand how women make the choice to plan for an out-of-hospital birth and the meaning that women ascribe to this decision-making process. a qualitative phenomenological study was conducted in Winnipeg, Canada with a sample of seventeen post partum women who represent the socio-demographic characteristics of the actual users of the Birth Centre in Winnipeg. The women participated in semistructured interviews. Through a feminist perspective and using interpretative phenomenological analysis (IPA), each participant's experience of birthplace decision-making was explored. six themes emerged through the analysis: (1) Making the decision in the context of relationships; (2) Exercising personal agency; (3) An expression of one's ideology; (4) Really thinking it through; (5) Fitting into the eligibility criteria; and (6) The psychology of the space. The findings suggested that a woman's sense of safety was related to each of these themes. the birth centre decision-making experience has many similarities to the homebirth decision-making process. The visceral impact of the physical design of the facility plays an important role and differentiates the birth centre decision from other birth setting options. The concept of relational autonomy was emphasised in this study, in that women make the decision in the context of their relationships with their midwives and partners. The study has implications for midwifery practice and health-care policy related to: client education on birth settings, design of birth environments, validation of the birth centre concept, and upholding the women-centred midwifery model of care. The study highlighted the importance of increasing access to out-of-hospital birth centres. Copyright © 2016 Elsevier Ltd. All rights reserved.

Comparisons of guardianship laws and surrogate decision-making practices in China, Japan, Thailand and Australia: a review by the Asia Consortium, International Psychogeriatric Association (IPA) capacity taskforce.

PubMed

Tsoh, Joshua; Peisah, Carmelle; Narumoto, Jin; Wongpakaran, Nahathai; Wongpakaran, Tinakon; O'Neill, Nick; Jiang, Tao; Ogano, Shoichi; Mimura, Masaru; Kato, Yuka; Chiu, Helen

2015-06-01

The International Psychogeriatric Association (IPA) capacity taskforce was established to promote the autonomy, proper access to care, and dignity of persons with decision-making disabilities (DMDs) across nations. The Asia Consortium of the taskforce was established to pursue these goals in the Asia-Pacific region. This paper is part of the Asia Consortium's initiative to promote understanding and advocacy in regard to surrogate decision-making across the region. The current guardianship laws are compared, and jurisdictional variations in the processes for proxy decision-making to support persons with DMDs and other health and social needs in China, Japan, Thailand, and Australia are explored. The different Asia-Pacific countries have various proxy decision-making mechanisms in place for persons with DMDs, which are both formalized according to common law, civil law, and other legislation, and shaped by cultural practices. Various processes for guardianship and mechanisms for medical decision-making and asset management exist across the region. Processes that are still evolving across the region include those that facilitate advanced planning as a result of the paucity of legal structures for enduring powers of attorney (EPA) and guardianship in some regions, and the struggle to achieve consensual positions in regard to end-of-life decision-making. Formal processes for supporting decision-making are yet to be developed. The diverse legal approaches to guardianship and administration must be understood to meet the challenges of the rapidly ageing population in the Asia-Pacific region. Commonalities in the solutions and difficulties faced in encountering these challenges have global significance.

The role of male partners in women's participation in research during pregnancy: a case study from the partners demonstration project.

PubMed

Ngure, Kenneth; Trinidad, Susan Brown; Beima-Sofie, Kristin; Baeten, Jared M; Mugo, Nelly R; Bukusi, Elizabeth A; Heffron, Renee; John-Stewart, Grace; Kelley, Maureen C

2017-12-14

The exclusion of pregnant women from health research remains a significant challenge globally. In settings where cultural traditions and gender norms support a more restricted decision-making role for women in general, little is known about the attitudes of male partners toward the inclusion of women in research during pregnancy. Understanding the expectations of both men and women in such cultural settings offers an opportunity to engage and address local ethical concerns to improve women's access to research during pregnancy and enhance intervention development. In this paper, we present a qualitative research ethics case study, drawn from the Partners Demonstration Project of pre-exposure prophylaxis (PrEP) in Kenya, regarding the role of male partners in decision-making to continue PrEP during pregnancy. PrEP is an effective HIV prevention tool; however, since pregnant women were excluded from early PrEP clinical trials, safety and efficacy data during pregnancy are limited. Given continued high rates of HIV infection for women, some pregnant women are now being provided with PrEP or are involved in PrEP research. Men and women in our study were equally concerned about the health risks of PrEP to the fetus and depended on healthcare provider guidance to understand these risks. Because the demonstration project enrolled couples, an implicit social expectation for many women's continuation of PrEP during pregnancy was consultation with male partners. Some women reported that consenting to participate was exclusively a woman's decision; however, many reported that they deferred to their male partner's opinion and support during the decision-making process. Most male partners believed women should not participate in research studies without their partner's permission, while a few men believed participation was ultimately a woman's decision. We suggest that relational autonomy can support a middle ground for informed consent that promotes women's autonomy while accommodating partner engagement.

Women’s Autonomy and Its Correlates in Western Nepal: A Demographic Study

PubMed Central

Bhandari, Tulsi Ram; Kutty, V. Raman; Ravindran, T. K. Sundari

2016-01-01

Despite various efforts for enhancing women’s autonomy in developing countries, many women are deprived of their capacity in decision-making on their household affairs as well as social issues. This paper aimed to examine women’s autonomy and its associated factors in the Kapilvastu district of Nepal. We measured women’s autonomy using a recently developed women’s autonomy measurement scale from June to October 2014. Descriptive statistics, chi-square test and logistic multivariate modeling technique were applied for assessing the association of demographic and socio-economic characteristics of women and their autonomy. Mean score for women’s autonomy was 23.34± 8.06 out of the possible maximum 48. It was found to be positively associated with higher age difference at marriage, advantaged caste/ethnicity, better employment for the husband, couple’s education more than 10 years schooling, and higher economic status of the household. We found strong direct effect of women’s education (OR = 8.14, CI = 3.77–17.57), husband’s education (OR = 2.63, CI = 1.69–4.10) and economic status of household (OR = 1.42, CI = 1.01–2.03) on women’s autonomy. When we adjusted women’s education for husband’s education, the odds ratio decreased by around 22% {from (OR = 8.14, CI = 3.77–17.57) to (OR = 6.32, CI = 2.77–14.46)} and was a mediator effect. The economic status of household also had mediator effect on women’s autonomy through their education. Education status of women is a key predictor of women’s autonomy in Kapilvastu district. Husband’s education and economic status of the household are other important predictors of women’s autonomy which have a mediator effect on women’s autonomy. Improving educational status and economic conditions of both women and their husbands may be the best solution to promote women’s autonomy. PMID:26799217

Patients' views on their decision making during inpatient rehabilitation after newly acquired spinal cord injury-A qualitative interview-based study.

PubMed

Scheel-Sailer, Anke; Post, Marcel W; Michel, Franz; Weidmann-Hügle, Tatjana; Baumann Hölzle, Ruth

2017-10-01

Involving patients in decision making is a legal requirement in many countries, associated with better rehabilitation outcomes, but not easily accomplished during initial inpatient rehabilitation after severe trauma. Providing medical treatment according to the principles of shared decision making is challenging as a point in case for persons with spinal cord injury (SCI). The aim of this study was to retrospectively explore the patients' views on their participation in decision making during their first inpatient rehabilitation after onset of SCI, in order to optimize treatment concepts. A total of 22 participants with SCI were interviewed in-depth using a semi-structured interview scheme between 6 months and 35 years post-onset. Interviews were transcribed verbatim and analysed with the Mayring method for qualitative content analysis. Participants experienced a substantially reduced ability to participate in decision making during the early phase after SCI. They perceived physical, psychological and environmental factors to have impacted upon this ability. Patients mentioned regaining their ability to make decisions was an important goal during their first rehabilitation. Receiving adequate information in an understandable and personalized way was a prerequisite to achieve this goal. Other important factors included medical and psychological condition, personal engagement, time and dialogue with peers. During the initial rehabilitation of patients with SCI, professionals need to deal with the discrepancy between the obligation to respect a patient's autonomy and their diminished ability for decision making. © 2017 The Authors Health Expectations Published by John Wiley & Sons Ltd.

[Breast cancer and pregnancy: decision making and the point of view of the mother].

PubMed

Eisinger, François; Noizet, Agnès

2002-09-01

For the treatment of breast cancer, modifications of decision making related to pregnancy could be assessed through three questions. Why a decision had been chosen? In that case, the hypothesis is that decisions are based on the expected utility. The theory assumes weighting and computation of complete possibilities with their associated probabilities and values. However values exhibits a wide inter-individual variation range. Therefore the predictability of choice based on this model is indeed very low. Furthermore it is likely that the willingness of pregnancy after breast cancer contains besides classic constituents of appeals of motherhood, a specific meaning of recovery both of health and femininity. The second question: who is in charge of the decision? And under the paradigm of autonomy, women' decision is, merely by itself, the right decision. The last question is how? For some situations for which foreseeing is quiet complex, the value of the process in itself is increased and could help the end-oriented or self-determined decision. Casuistic analysis could therefore improve women' decisions. The issue is not only about decision but also related to patient-physician relationship, about an issue that is not only a biomedical problem.

Safe delivery care practices in western Nepal: Does women’s autonomy influence the utilization of skilled care at birth?

PubMed Central

Kutty, V. Raman; Sarma, P. Sankara; Dangal, Ganesh

2017-01-01

Despite various efforts to increase the utilization of skilled birth attendants (SBA), nearly two-thirds of deliveries take place at home without the assistance of SBAs in Nepal. We hypothesized that the ability of women to take decisions about their own lives—women’s autonomy—plays an important part in birth choices. To know this, we conducted a community-based cross-sectional study for assessing women’s autonomy and utilization of safe delivery care service in Kapilvastu district of Nepal from June to October 2014. We used multivariate modeling to associate socioeconomic factors and women’s autonomy with the utilization of safe delivery care services. Just over one-third of women sought institutional delivery care during the birth of their last child. Out of the total deliveries at health facilities, nearly 58% women visited health facility for self-reported emergency obstructive care. Only 6.2% home deliveries were handled by health workers and 14.7% women used the safe delivery kit for home delivery care. Higher levels of women’s education had a strong positive association (odds ratio = 24.11, CI = 9.43–61.64) with institutional delivery care. Stratified analysis showed that when the husband is educated, women’s education seems to work partly through their autonomy in decision making. Educational status of women emerged as one of the key predictors of the utilization of delivery care services in Kapilvastu district. Economic status of household and husband’s education are other dominant predictors of the utilization of safe delivery care services. Improving the economic and educational status may be the way out for improving the proportion of institutional deliveries. Women’s autonomy may be an important mediating factor in this pathway. PMID:28771579

The decision to have an abortion from both partners' perspectives: a dyadic analysis.

PubMed

Vandamme, Joke; Buysse, Ann; Loeys, Tom; Vrancken, Carine; T'Sjoen, Guy

2017-02-01

Male partners are often involved in induced abortion although they have no legal rights. It is, however, unknown how women's thoughts and feelings regarding the decision for abortion are associated with the decisional experiences of the involved male partners and vice versa. Flemish women and their involved male partners (IMP) filled out a questionnaire on abortion motives and feelings of decisiveness in the abortion centre waiting room (N = 106 couples). Actor Partner Interdependence Models investigated whether the decisiveness of one partner was associated with a subjective feeling of autonomy (high internal, low external abortion motivation) and decisiveness of the other partner, above and beyond the own feeling of autonomy and personal vulnerabilities for being uncertain. Partner congruence in motivation and decisiveness was substantial (r= 0.23 to 0.42), especially for cohabiting partners. The IMPs were less internally motivated for the abortion than the women but both partners reported more internal than external motives, and they both tended to feel certain. In contrast to the women, a higher subjective feeling of autonomy in the IMPs was not associated with feeling more certain. When accounting for partners' living situation, levels of uncertainty were not only associated with personal vulnerabilities for being uncertain, but were also related to the degree of uncertainty and subjective level of autonomy of the other partner. Partners' thoughts and feelings regarding the decision for abortion partially have an interpersonal basis and mostly run parallel despite an inherent gender difference in level and importance of decision autonomy.

Municipal Health Councils of Brazil: a debate on the democratization of health in the twenty years of the UHS.

PubMed

Moreira, Marcelo Rasga; Escorel, Sarah

2009-01-01

Over 17 years, Health Councils were created in the 5,564 Brazilian towns, recruiting about 72,000 councilors. Authors affirm that the institutionalization of the Council is important for the democratization of municipal health policy, as it increases the actors who are participating in its decision-making process. However, they state that this is not enough to make this process fully democratized. This setting is investigated through a new census research about the functioning of the Municipal Health Councils. To understand it, we use three analytical dimensions (autonomy, organization and access) made up of 18 variable. The analysis of results shows that the MHCs have problems with autonomy and organization and good performance in access. Distribution by population size reveals that the best results are in the MHCs of towns with more than 250,000 inhabitants, and the worst are those in towns with a population below 50,000. The problems identified are reactions to the institutionalization of the MHCs. These reactions come from governors who consider the attributes and the deliberative character of the MHCs to be threatening to their interests. They occur due to their low cost, as the rules of the decision-making process do not discourage them. Here, we seek to understand reactions and rules, presenting proposals for overcoming problems.

Clinical effectiveness of a patient decision aid to improve decision quality and glycaemic control in people with diabetes making treatment choices: a cluster randomised controlled trial (PANDAs) in general practice

PubMed Central

Mathers, Nigel; Ng, Chirk Jenn; Campbell, Michael Joseph; Colwell, Brigitte; Brown, Ian; Bradley, Alastair

2012-01-01

Objective To determine the effectiveness of a patient decision aid (PDA) to improve decision quality and glycaemic control in people with diabetes making treatment choices using a cluster randomised controlled trial (RCT). Design A cluster RCT. Setting 49 general practices in UK randomised into intervention (n=25) and control (n=24). Participants General practices Inclusion criteria: >4 medical partners; list size >7000; and a diabetes register with >1% of practice population. 191 practices assessed for eligibility, and 49 practices randomised and completed the study. Patients People with type 2 diabetes mellitus (T2DM) taking at least two oral glucose-lowering drugs with maximum tolerated dose with a glycosolated haemoglobin (HbA1c) greater than 7.4% (IFCC HbA1c >57 mmol/mol) or advised in the preceeding 6 months to add or consider changing to insulin therapy. Exclusion criteria: currently using insulin therapy; difficulty reading or understanding English; difficulty in understanding the purpose of the study; visual or cognitive impairment or mentally ill. A total of 182 assessed for eligibility, 175 randomised to 95 intervention and 80 controls, and 167 completion and analysis. Intervention Brief training of clinicians and use of PDA with patients in single consultation. Primary outcomes Decision quality (Decisional Conflict Scores, knowledge, realistic expectations and autonomy) and glycaemic control (glycosolated haemoglobin, HbA1c). Secondary outcomes Knowledge and realistic expectations of the risks and benefits of insulin therapy and diabetic complications. Results Intervention group: lower total Decisional Conflict Scores (17.4 vs 25.2, p<0.001); better knowledge (51.6% vs 28.8%, p<0.001); realistic expectations (risk of ‘hypo’, ‘weight gain’, ‘complications’; 81.0% vs 5.2%, 70.5% vs 5.3%, 26.3% vs 5.0% respectively, p<0.001); and were more autonomous in decision-making (64.1% vs 42.9%, p=0.012). No significant difference in the glycaemic control between the two groups. Conclusions Use of the PANDAs decision aid reduces decisional conflict, improves knowledge, promotes realistic expectations and autonomy in people with diabetes making treatment choices in general practice. ISRCTN Trials Register Number 14842077. PMID:23129571

Allocating health care: cost-utility analysis, informed democratic decision making, or the veil of ignorance?

PubMed

Goold, S D

1996-01-01

Assuming that rationing health care is unavoidable, and that it requires moral reasoning, how should we allocate limited health care resources? This question is difficult because our pluralistic, liberal society has no consensus on a conception of distributive justice. In this article I focus on an alternative: Who shall decide how to ration health care, and how shall this be done to respect autonomy, pluralism, liberalism, and fairness? I explore three processes for making rationing decisions: cost-utility analysis, informed democratic decision making, and applications of the veil of ignorance. I evaluate these processes as examples of procedural justice, assuming that there is no outcome considered the most just. I use consent as a criterion to judge competing processes so that rationing decisions are, to some extent, self-imposed. I also examine the processes' feasibility in our current health care system. Cost-utility analysis does not meet criteria for actual or presumed consent, even if costs and health-related utility could be measured perfectly. Existing structures of government cannot creditably assimilate the information required for sound rationing decisions, and grassroots efforts are not representative. Applications of the veil of ignorance are more useful for identifying principles relevant to health care rationing than for making concrete rationing decisions. I outline a process of decision making, specifically for health care, that relies on substantive, selected representation, respects pluralism, liberalism, and deliberative democracy, and could be implemented at the community or organizational level.

Teacher Work Environments Are Toddler Learning Environments: Teacher Professional Well-Being, Classroom Emotional Support, and Toddlers' Emotional Expressions and Behaviours

ERIC Educational Resources Information Center

Cassidy, Deborah J.; King, Elizabeth K.; Wang, Yudan C.; Lower, Joanna K.; Kintner-Duffy, Victoria L.

2017-01-01

The current study examines the professional well-being of teachers, the classroom emotional support, and the emotional experiences of toddlers in their care. Professional well-being of teachers is conceptualized to include teacher feelings about their work, autonomy in decision-making, actual wages, and perceptions of fairness of wages within the…

Dignity and cost-effectiveness: analysing the responsibility for decisions in medical ethics.

PubMed Central

Robertson, G S

1984-01-01

In the operation of a health care system, defining the limits of medical care is the joint responsibility of many parties including clinicians, patients, philosophers and politicians. It is suggested that changes in the potential for prolonging life make it necessary to give doctors guidance which may have to incorporate certain features of utilitarianism, individualism and patient-autonomy. PMID:6502644

Explaining and Influencing Chinese Arms Transfers

DTIC Science & Technology

1995-02-01

this volume: Jonathan W. Pierce [] Secretary: Laura Hall [] Circulation Manager : Myma Morgan INSS publishes McNair Papers to provoke thought and inform...their affiliated factories were directed to decentralize their decision-making processes, grant more autonomy to managers , use excess capacity to...intimacy of ties between Moscow and 10 EXPLAINING AND INFLUENCING CHINESE ARMS TRANSFERS New Dehli , and concem that the United States was still in retreat

Participative Work Design in Lean Production: A Strategy for Dissolving the Paradox between Standardized Work and Team Proactivity by Stimulating Team Learning?

ERIC Educational Resources Information Center

Lantz, Annika; Hansen, Niklas; Antoni, Conny

2015-01-01

Purpose: The purpose of this paper is to explore job design mechanisms that enhance team proactivity within a lean production system where autonomy is uttermost restricted. We propose and test a model where the team learning process of building shared meaning of work mediates the relationship between team participative decision-making, inter team…

DoD Research and Engineering Enterprise

DTIC Science & Technology

2014-05-01

Secretary of Defense Hagel, Pentagon Press Briefing Room, February 24, 2014 Technological superiority has been central to the strategy of the...understand the environment, to software algorithms that can make a decision or seek human assistance. Through autonomy, we should be able to greatly reduce...computers are a commercial product 1 , and quantum key distribution for data encryption is nearly a commercial product. These two applications are

Reinforcers of the Occupation of Homemaker: An Analysis of the Need-Gratifying Properties of the Homemaker Occupation across the Stages of the Homemaker Life Cycle.

ERIC Educational Resources Information Center

Tinsley, Howard E. A.; Tinsley, Diane J.

1989-01-01

Examined the pattern of reinforcers characteristic of the homemaker occupation in order to identify occupations similar and dissimilar to this job. Homemakers (N=107) with less than half-time employment completed the Minnesota Job Description Questionnaire (MJDQ). Reinforcers for homemaking role include decision-making authority and autonomy,…

Use of physical restraint in nursing homes: clinical‐ethical considerations

PubMed Central

Gastmans, C; Milisen, K

2006-01-01

This article gives a brief overview of the state of the art concerning physical restraint use among older persons in nursing homes. Within this context we identify some essential values and norms that must be observed in an ethical evaluation of physical restraint. These values and norms provide the ethical foundation for a number of concrete recommendations that could give clinical and ethical support to caregivers when they make decisions about physical restraint. Respect for the autonomy and overall wellbeing of older persons, a proportional assessment of the advantages and disadvantages, a priority focus on the alternatives to physical restraint, individualised care, interdisciplinary decision making, and an institutional policy are the central points that make it possible to deal responsibly with the use of physical restraint for older persons in nursing homes. PMID:16507658

Ethical issues in sports medicine: a review and justification for ethical decision making and reasoning.

PubMed

Greenfield, Bruce H; West, Charles Robert

2012-11-01

Ethical issues present a challenge for health care professionals working with athletes of sports teams. Health care professionals-including the team physician, the physical therapist, and the athletic trainer-are faced with the challenge of returning an athlete to competition as quickly as possible but as safely as possible. Conflicts of interest arise due to conflicting obligations of the team physician to the athlete and other members of the sports organization, including coaches and the team owner. The multiple stakeholders involved in sports teams challenge the traditional notion of confidentiality and autonomy. The aims of this article are to explicate the ethics of sports medicine, highlight the ethical issues, and provide some strategies and suggestions for ethical decision making.

Sexuality and physical intimacy in long-term care.

PubMed

Lichtenberg, Peter A

2014-01-01

Sexuality and sexual needs in older adults remains a neglected area of clinical intervention, particularly so in long-term care settings. Because older adults in medical rehabilitation and long-term care beds present with significant frailties, and often significant neurocognitive disorders, it makes it difficult for occupational therapists and other staff to evaluate the capacity of an older adult resident to participate in sexual relationships. The current paper reviews the current literature on sexuality and aging, examines some of the clinical practices and guidelines regarding sexual expression in long-term care, and presents two case examples. A semistructured interview and decision tree is presented to assist therapists in making careful and informed decisions and thereby balancing the needs for protection with the needs for autonomy.

"I Don't Know That I've Ever Felt Like I Got the Full Story": A Qualitative Study of Courtroom Interactions Between Judges and Litigants in Domestic Violence Protective Order Cases.

PubMed

Person, Cara J; Moracco, Kathryn E Beth; Agnew-Brune, Christine; Bowling, J Michael

2018-01-01

One in three U.S. women has experienced intimate partner violence (IPV) and many seek domestic violence protective orders (DVPOs) for secondary IPV prevention. Because judges have considerable autonomy making DVPO decisions, there is a need to describe how courtroom interactions and information available to judges may influence DVPO dispositions. We conducted DVPO hearing observations and phone interviews with District Court Judges. Qualitative themes emerged that may influence judges' decision making in DVPO hearings: case information availability, judge engagement level, and litigant credibility. Recommendations include more time for judges to review case files, IPV-related training for judges, and increased court advocate use.

Interprofessional collaboration in the ICU: how to define?

PubMed

Rose, Louise

2011-01-01

The intensive care unit (ICU) is a dynamic, complex and, at times, highly stressful work environment that involves ongoing exposure to the complexities of interprofessional team functioning. Failures of communication, considered examples of poor collaboration among health care professionals, are the leading cause of inadvertent harm across all health care settings. Evidence suggests effective interprofessional collaboration results in improved outcomes for critically ill patients. One recent study demonstrated a link between low standardized mortality ratios and self-identified levels of collaboration. The aim of this paper is to discuss determinants and complexities of interprofessional collaboration, the evidence supporting its impact on outcomes in the ICU, and interventions designed to foster better interprofessional team functioning. Elements of effective interprofessional collaboration include shared goals and partnerships including explicit, complementary and interdependent roles; mutual respect; and power sharing. In the ICU setting, teams continually alter due to large staff numbers, shift work and staff rotations through the institution. Therefore, the ideal 'unified' team working together to provide better care and improve patient outcomes may be difficult to sustain. Power sharing is one of the most complex aspects of interprofessional collaboration. Ownership of specialized knowledge, technical skills, clinical territory, or even the patient, may produce interprofessional conflict when ownership is not acknowledged. Collaboration by definition implies interdependency as opposed to autonomy. Yet, much nursing literature focuses on achievement of autonomy in clinical decision-making, cited to improve job satisfaction, retention and patient outcomes. Autonomy of health care professionals may be an inappropriate goal when striving to foster interprofessional collaboration. Tools such as checklists, guidelines and protocols are advocated, by some, as ways for nurses to gain influence and autonomy in clinical decision-making. Protocols to guide ICU practices such as sedation and weaning reduce the duration of mechanical ventilation in some studies, while others have failed to demonstrate this advantage. Existing organizational strategies that facilitate effective collaboration between health care professionals may contribute to this lack of effect.

Women's autonomy and social support and their associations with infant and young child feeding and nutritional status: community-based survey in rural Nicaragua.

PubMed

Ziaei, Shirin; Contreras, Mariela; Zelaya Blandón, Elmer; Persson, Lars-Åke; Hjern, Anders; Ekström, Eva-Charlotte

2015-08-01

To evaluate the associations of women's autonomy and social support with infant and young child feeding practices (including consumption of highly processed snacks and sugar-sweetened beverages) and nutritional status in rural Nicaragua. Cross-sectional study. Feeding practices and children's nutritional status were evaluated according to the WHO guidelines complemented with information on highly processed snacks and sugar-sweetened beverages. Women's autonomy was assessed by a seventeen-item questionnaire covering dimensions of financial independence, household-, child-, reproductive and health-related decision making and freedom of movement. Women's social support was determined using the Duke-UNC Functional Social Support Questionnaire. The scores attained were categorized into tertiles. Los Cuatro Santos area, rural Nicaragua. A total of 1371 children 0-35 months of age. Children of women with the lowest autonomy were more likely to be exclusively breast-fed and continue to be breast-fed, while children of women with middle level of autonomy had better complementary feeding practices. Children of women with the lowest social support were more likely to consume highly processed snacks and/or sugar-sweetened beverages but also be taller. While lower levels of autonomy and social support were independently associated with some favourable feeding and nutrition outcomes, this may not indicate a causal relationship but rather that these factors reflect other matters of importance for child care.

Autonomy and self-esteem of women who donate to an oocyte cryopreservation bank in the Netherlands.

PubMed

Bakker, Marjolein R; Maas, Joyce; Bekker, Marrie H; Bredenoord, Annelien L; Fauser, Bart C; Bos, Annelies M

2017-08-01

Worldwide, oocyte donors donate voluntarily or receive varying amounts of money for donation. This raises ethical questions regarding the appropriateness of financial compensation, and the possibility of undue inducement and exploitation of oocyte donors. Are these donors capable of making an independent, well-considered decision? Regarding this matter, it is important to examine aspects such as autonomy-connectedness and self-esteem. In this cross-sectional study, demographic characteristics and donation motivations were assessed in 92 women who attended the University Medical Center (UMC) Utrecht as potential oocyte donors between June 2012 and July 2016. Demographic characteristics were assessed. Motivations were recorded in semi-structured interviews (response rate 59%). The Rosenberg Self-Esteem Scale was used to assess level of self-esteem. The Autonomy-Connectedness Scale was used to measure the level of autonomy-connectedness. The typical oocyte donor at the UMC Utrecht is a well-educated, employed, 31-year-old woman living with her partner in a completed family with two children, and donating on altruistic grounds. The donors showed higher autonomy-connectedness scores than the average female Dutch population and do not lack self-esteem (questionnaire response rate 66%). Concerns regarding exploitation and attraction of women with lower socioeconomic status, with shortcomings in autonomy-connectedness and self-esteem, could not be confirmed in this group. Copyright © 2017 Reproductive Healthcare Ltd. Published by Elsevier Ltd. All rights reserved.

Autonomy and dignity: a discussion on contingency and dominance.

PubMed

Van Brussel, Leen

2014-06-01

With dying increasingly becoming a medicalised experience in old age, we are witnessing a shift from concern over death itself to an interest in dying 'well'. Fierce discussions about end-of-life decision making and the permissibility of medical intervention in dying, discursively structured around the notion of a 'good' death, are evidence of this shift. This article focuses on 'autonomy' and 'dignity' as key signifiers in these discussions. Rather than being fully fixed and stable, both signifiers are contingent and carry a variety of meanings within different discursive projects. The article aims to distinguish the varieties of these signifiers by elaborating existing theoretical perspectives on autonomy and dignity, and also, starting from a perspective on mass media as sites of meaning production and contestation, to study the contingency of autonomy and dignity in Belgian newspaper coverage of four prominent euthanasia cases. By means of a discourse-theoretical textual analysis, this study exposes a dominant--yet contested--articulation of rational-personal autonomy and of dignity in external terms as something that can be obtained, retained or lost, rather than in terms of intrinsic human integrity. These logics of representation reflect a more general late modern dominance of liberal autonomy and of dignity as being closely connected to self-identity, but at the same time result in limited visibility of alternative ways of experiencing an autonomous and dignified death.

[How free is free will? Neuro-scientific and philosophical aspects of motivation and decision-making].

PubMed

Hinterhuber, Hartmann

2012-01-01

The question concerning the postulated freedom of will continues to occupy the neuro-sciences, psychiatry, law and neuro-philosophy. Do current research results really show that freedom and responsibility were only illusions, since previously supposed free decisions were only accompanying features of long held neuronal activations? Did Julien de La Mettrie have a great vision, when, already in the Eighteenth Century, he expected a "monsieur Machine"?This article attempts to summarize and evaluate findings that are currently available. The autonomy of human action is not only founded in a subjectively perceived act of will but far more in the ability of the human being to act according to an inner drive which is steered consciously and rationally. The autonomy of human action is not only restricted to the perceived ego, but comprises body and soul, brain and spirit and consequently the whole human being with all their characteristics, values and aims. Modern science thereby supports the old philosophical theory of a conditional freedom of will.

Applicability of the principle of respect for autonomy: the perspective of Turkey.

PubMed

Kara, Mahmut Alpertunga

2007-11-01

Turkey has a complex character, which has differences from the Western world or Eastern Asia as well as common points. Even after more than a century of efforts to modernise and integrate with the West, Turkish society has values that are different from those of the West, as well as having Western values. It is worth questioning whether ordinary Turkish people show an individualistic character. The principle of respect for individual autonomy arises from a perception of oneself as an individual, and the person's situation may affect the applicability of the principle. Patients who perceive themselves to be members of a community rather than free persons and who prefer to participate in the common decisions of the community and to consider the common interest and the common value system of the community concerning problems of their life (except healthcare or biomedical research) rather than to decide as independent, rational individuals may not be competent to make an autonomous choice. Expectations that such patients will behave as autonomous individuals may be unjustified. The family, rather than the patient, may take a primary role in decisions. A flexible system considering cultural differences in the concept of autonomy may be more feasible than a system following strict universal norms.

Applicability of the principle of respect for autonomy: the perspective of Turkey

PubMed Central

Kara, Mahmut Alpertunga

2007-01-01

Turkey has a complex character, which has differences from the Western world or Eastern Asia as well as common points. Even after more than a century of efforts to modernise and integrate with the West, Turkish society has values that are different from those of the West, as well as having Western values. It is worth questioning whether ordinary Turkish people show an individualistic character. The principle of respect for individual autonomy arises from a perception of oneself as an individual, and the person's situation may affect the applicability of the principle. Patients who perceive themselves to be members of a community rather than free persons and who prefer to participate in the common decisions of the community and to consider the common interest and the common value system of the community concerning problems of their life (except healthcare or biomedical research) rather than to decide as independent, rational individuals may not be competent to make an autonomous choice. Expectations that such patients will behave as autonomous individuals may be unjustified. The family, rather than the patient, may take a primary role in decisions. A flexible system considering cultural differences in the concept of autonomy may be more feasible than a system following strict universal norms. PMID:17971462

Maternal autonomy is inversely related to child stunting in Andhra Pradesh, India.

PubMed

Shroff, Monal; Griffiths, Paula; Adair, Linda; Suchindran, Chirayath; Bentley, Margaret

2009-01-01

Child stunting, an outcome of chronic undernutrition, contributes to poor quality of life, morbidity and mortality. In South Asia, the low status of women is thought to be one of the primary determinants of undernutrition across the lifespan. Low female status can result in compromised health outcomes for women, which in turn are related to lower infant birthweight and may affect the quality of infant care and nutrition. Maternal autonomy (defined as a woman's personal power in the household and her ability to influence and change her environment) is likely an important factor influencing child care and ultimately infant and child health outcomes. To examine the relationship between maternal autonomy and child stunting in Andhra Pradesh, India, we analysed data from National Family Health Survey (NFHS)-2. We used cross-sectional demographic, health and anthropometric information for mothers and their oldest child <36 months (n = 821) from NFHS-2. The main explanatory variables of autonomy are presented by four dimensions - decision making, permission to travel, attitude towards domestic violence and financial autonomy - constructed using seven binary variables. Logistic regression models were used to test associations between indicators of female autonomy and the risk of having a stunted child. Women with higher autonomy {indicated by access to money [odds ratio (OR) = 0.731; 95% confidence interval (CI) 0.546, 0.981] and freedom to choose to go to the market [OR = 0.593; 95% CI 0.376, 0.933]} were significantly less likely to have a stunted child, after controlling for household socio-economic status and mother's education. In this south Indian state, two dimensions of female autonomy have an independent effect on child growth, suggesting the need for interventions that increase women's financial and physical autonomy.

Is frailty associated with life-space mobility and perceived autonomy in participation outdoors? A longitudinal study.

PubMed

Portegijs, Erja; Rantakokko, Merja; Viljanen, Anne; Sipilä, Sarianna; Rantanen, Taina

2016-07-01

essential aspects of independence in community mobility among older people concern the control over where, when and how to participate (perceived autonomy), and actual mobility (life-space mobility; frequency, distance and need of assistance). We studied relationships between frailty and life-space mobility and perceived autonomy in participation outdoors among community-dwelling 75-90 years old people. longitudinal analyses of the 'Life-space mobility in old age' cohort study (n = 753). Life-space mobility (Life-Space Assessment, range 0-120) and perceived autonomy in participation outdoors (Impact on Participation and Autonomy subscale 'autonomy outdoors', range 0-20) were assessed at baseline and 2 years later. Baseline frailty indicators were unintentional weight loss (self-report), weakness (5 times chair rise), exhaustion (self-report), slowness (2.44 m walk) and low physical activity (self-report). in total, 53% had no frailty, 43% pre-frailty (1-2 frailty indicators) and 4% frailty (≥3 indicators). Generalised estimation equation models showed that life-space mobility was lower among those with frailty and pre-frailty compared with those without frailty and, in addition, declined at a faster pace. Perceived autonomy in participation outdoors was more restricted among those with frailty and pre-frailty compared with those without frailty, but the rate of decline did not differ. frailty was associated with more restricted life-space mobility and poorer perceived autonomy in the decision-making concerning community mobility. Over the follow-up, frailty predicted a steeper decline in life-space mobility but not in perceived autonomy. Further study is warranted to determine whether compensation strategies or changes in the valuation of activities underlie this discrepancy. © The Author 2016. Published by Oxford University Press on behalf of the British Geriatrics Society. All rights reserved. For Permissions, please email: journals.permissions@oup.com.

Implementing shared decision making in routine mental health care

PubMed Central

Slade, Mike

2017-01-01

Shared decision making (SDM) in mental health care involves clinicians and patients working together to make decisions. The key elements of SDM have been identified, decision support tools have been developed, and SDM has been recommended in mental health at policy level. Yet implementation remains limited. Two justifications are typically advanced in support of SDM. The clinical justification is that SDM leads to improved outcome, yet the available empirical evidence base is inconclusive. The ethical justification is that SDM is a right, but clinicians need to balance the biomedical ethical principles of autonomy and justice with beneficence and non‐maleficence. It is argued that SDM is “polyvalent”, a sociological concept which describes an idea commanding superficial but not deep agreement between disparate stakeholders. Implementing SDM in routine mental health services is as much a cultural as a technical problem. Three challenges are identified: creating widespread access to high‐quality decision support tools; integrating SDM with other recovery‐supporting interventions; and responding to cultural changes as patients develop the normal expectations of citizenship. Two approaches which may inform responses in the mental health system to these cultural changes – social marketing and the hospitality industry – are identified. PMID:28498575

Ethically-based clinical decision-making in physical therapy: process and issues.

PubMed

Finch, Elspeth; Geddes, E Lynne; Larin, Hélène

2005-01-01

The identification and consideration of relevant ethical issues in clinical decision-making, and the education of health care professionals (HCPs) in these skills are key factors in providing quality health care. This qualitative study explores the way in which physical therapists (PTs) integrate ethical issues into clinical practice decisions and identifies ethical themes used by PTs. A purposive sample of eight PTs was asked to describe a recent ethically-based clinical decision. Transcribed interviews were coded and themes identified related to the following categories: 1) the integration of ethical issues in the clinical decision-making process, 2) patient welfare, 3) professional ethos of the PT, and 4) health care economics and business practices. Participants readily described clinical situations involving ethical issues but rarely identified specific conflicting ethical issues in their description. Ethical dilemmas were more frequently resolved when there were fewer emotional sequelae associated with the dilemma, and the PT had a clear understanding of professional ethos, valued patient autonomy, and explored a variety of alternative actions before implementing one. HCP students need to develop a clear professional ethos and an increased understanding of the economic factors that will present ethical issues in practice.

[Is it possible to determine the competency of a patient?].

PubMed

Payne, J

2004-01-01

The contemporary medicine goes through a deep transition with regard particularly to humanization; modern ethics has effected sundry changes in attitudes to patients and one of them is the edification of her/his right to make choices about her/himself. The concept of autonomy however meets the problem of assessment of the level to which the concrete patient is capable of making decision due to various impairments and strains. One possible criterion, which is compliant with traditional philosophy and which is based on rationality is suggested here.

Situation awareness: when nurses decide to admit or not admit a person with mental illness as an involuntary patient.

PubMed

Patterson, Christopher; Procter, Nicholas; Toffoli, Luisa

2016-09-01

This paper will explore the application of situation awareness in nursing to determine its suitability as a framework to study how the decision to admit or not admit a person as an involuntary patient is made. The decision by a specially qualified nurse to admit or not admit a person to a mental health facility against their will remains a central component of contemporary mental health legislation. The decision has an impact on a person's autonomy and human rights. Conversely, the decision to admit may facilitate urgent assessment and treatment and ensure the safety of the individual and others. Research highlights that decision-making in this context is challenging due to the multiple information sources and often incomplete information available to the clinician. Situation awareness is a concept used to explain how practitioners identify, use and make meaning of a multitude of factors and elements relevant to their practice. Discussion paper. A search of terms related to situation awareness and mental health nursing was conducted in the period 2000 - present. Exploring nurses decision-making using a situation awareness framework provides for a more nuanced understanding of nurses knowledge and skill when deciding to admit or not a person as an involuntary patient. The concept of situation awareness provides a framework to better understand the decision-making process associated with the involuntary admission decision. © 2016 John Wiley & Sons Ltd.

Psychological aspects of individualized choice and reproductive autonomy in prenatal screening.

PubMed

Hewison, Jenny

2015-01-01

Probably the main purpose of reproductive technologies is to enable people who choose to do so to avoid the birth of a baby with a disabling condition. However the conditions women want information about and the 'price' they are willing to pay for obtaining that information vary enormously. Individual women have to arrive at their own prenatal testing choices by 'trading off' means and ends in order to resolve the dilemmas facing them. We know very little about how individuals make these trade-offs, so it is difficult to predict how new technologies will affect their choices and preferences. Uptake decisions can be expected to change, especially in the group of women who now are put off by some aspect of the current screening approach, where the avoidance of miscarriage risk may have provided a kind of 'psychological shelter', protecting a lot of people from having to make other decisions. Technologies such as Pre-implantation Genetic Diagnosis may remove a second 'psychological shelter' because they offer the means of avoiding the birth of an affected child without terminating a pregnancy. Even if new technologies will make some decisions easier in terms of their cognitive demands, they will also create new dilemmas and decision making will not necessarily become less stressful in emotional terms. Key challenges concern information and decision-making. © 2014 John Wiley & Sons Ltd.

Free to Lead: Autonomy in Highly Successful Charter Schools. Issue Brief

ERIC Educational Resources Information Center

Ableidinger, Joe; Hassel, Bryan C.

2010-01-01

Autonomy is a key component of the charter school concept. By allowing charter schools to have autonomy over decisions concerning finance, personnel, scheduling, curriculum and instruction, states have enabled many of these schools to produce stellar results for their students. This issue brief explores autonomy at five excellent charter schools…

Using Multimodal Input for Autonomous Decision Making for Unmanned Systems

NASA Technical Reports Server (NTRS)

Neilan, James H.; Cross, Charles; Rothhaar, Paul; Tran, Loc; Motter, Mark; Qualls, Garry; Trujillo, Anna; Allen, B. Danette

2016-01-01

Autonomous decision making in the presence of uncertainly is a deeply studied problem space particularly in the area of autonomous systems operations for land, air, sea, and space vehicles. Various techniques ranging from single algorithm solutions to complex ensemble classifier systems have been utilized in a research context in solving mission critical flight decisions. Realized systems on actual autonomous hardware, however, is a difficult systems integration problem, constituting a majority of applied robotics development timelines. The ability to reliably and repeatedly classify objects during a vehicles mission execution is vital for the vehicle to mitigate both static and dynamic environmental concerns such that the mission may be completed successfully and have the vehicle operate and return safely. In this paper, the Autonomy Incubator proposes and discusses an ensemble learning and recognition system planned for our autonomous framework, AEON, in selected domains, which fuse decision criteria, using prior experience on both the individual classifier layer and the ensemble layer to mitigate environmental uncertainty during operation.

Military Service and Decision Quality in the Management of Knee Osteoarthritis.

PubMed

Henderson, Eric R; Titus, Alexander J; Keeney, Benjamin J; Goodney, Philip P; Lurie, Jon D; Ibrahim, Said A

2018-05-18

Decision quality measures the degree to which care decisions are knowledge-based and value-aligned. Because military service emphasizes hierarchy, command, and mandates some healthcare decisions, military service may attenuate patient autonomy in healthcare decisions and lower decision quality. VA is the nation's largest provider of orthopedic care. We compared decision quality in a sample of VA and non-VA patients seeking care for knee osteoarthritis. Our study sample consisted of patients newly referred to our orthopedic clinic for the management of knee osteoarthritis. None of the study patients were exposed to a knee osteoarthritis decision aid. Consenting patients were administered the Hip/Knee Decision Quality Instrument (HK-DQI). In addition, they were surveyed about decision-making preferences and demographics. We compared results to a non-VA cohort from our academic institution's arthroplasty database. The HK-DQI Knowledge Score was lower in the VA cohort (45%, SD = 22, n = 25) compared with the non-VA cohort (53%, SD = 21, n = 177) (p = 0.04). The Concordance Score was lower in the VA cohort (36%, SD = 49%) compared with the control cohort (70%, SD 46%) (p = 0.003). Non-VA patients were more likely to make a high-quality decision (p = 0.05). Non-VA patients were more likely to favor a shared decision-making process (p = 0.002). Decision quality is lower in Veterans with knee osteoarthritis compared with civilians, placing them at risk for lower treatment satisfaction and possibly unwarranted surgical utilization. Our future work will examine if this difference is from conditioned military service behaviors or confounding demographic factors, and if conventional shared decision-making techniques will correct this deficiency.

[Considerations for the Definition of a Interval of Vulnerability/Possibility in Adolescence].

PubMed

Orón Semper, José Víctor; Echarte Alonso, Luis Enrique

2017-01-01

This article explores the hypothesis that while maturation related cognitive abilities reaches maturity around the age of fifteen, maturation related social skills is delayed until well into the twenties. Our goal is to try to define what is the window of opportunity/vulnerability and what is the maturational status of the young in this interval. In this context, we argue how the maturational time of the closing of adolescence has an impact on the valuation of autonomy in decision-making of the person. Particularly, we figure out implications for the assessment of the autonomy of youth in health issues, and also criminal liability. In the conclusion, we offer some educational criteria that may provide guidance for implementing both social policy and educational programs.

Legal process, litigation, and judicial decisions.

PubMed

Beresford, H Richard

2013-01-01

Ethically salient issues in neurologic care may have important legal overtones. This chapter considers some of these, emphasizing how law may influence the outcome of controversies over how best to promote autonomy, beneficence, and justice in the care of individuals with neurologic disorders. Constitutional, statutory, and judicial dimensions are addressed. With respect to autonomy, discussion emphasizes legal dimensions of the doctrine of informed consent and the obligations of medical professionals to protect the privacy and confidentiality of their patients. The discussion of beneficence focuses on issues relating to actual or potential conflicts of interest in the care of patients and on the conduct of research involving human subjects. The section on justice considers how law aims to define protectable rights and interests of individuals and to provide a fair and efficient process for resolving disputes. Applications of legal principles and doctrines are illustrated primarily through the examples afforded by judicial decisions. These cases demonstrate how law both promotes ethical decision-making and protects the rights and interests of those affected. The cases also highlight some of the ethical quandaries that evoke resort to litigation and the limits of law in advancing ethically appropriate outcomes. © 2013 Elsevier B.V. All rights reserved.

Planned change or emergent change implementation approach and nurses' professional clinical autonomy.

PubMed

Luiking, Marie-Louise; Aarts, Leon; Bras, Leo; Grypdonck, Maria; van Linge, Roland

2017-11-01

Nurses' clinical autonomy is considered important for patients' outcome and influenced by the implementation approach of innovations. Emergent change approach with participation in the implementation process is thought to increase clinical autonomy. Planned change approach without this participation is thought not to increase clinical autonomy. Evidence of these effects on clinical autonomy is however limited. To examine the changes in clinical autonomy and in personal norms and values for a planned change and emergent change implementation of an innovation, e.g. intensive insulin therapy. Prospective comparative study with two geographically separated nurses' teams on one intensive care unit (ICU), randomly assigned to the experimental conditions. Data were collected from March 2008 to January 2009. Pre-existing differences in perception of team and innovation characteristics were excluded using instruments based on the innovation contingency model. The Nursing Activity Scale was used to measure clinical autonomy. The Personal Values and Norms instrument was used to assess orientation towards nursing activities and the Team Learning Processes instrument to assess learning as a team. Pre-implementation the measurements did not differ. Post-implementation, clinical autonomy was increased in the emergent change team and decreased in the planned change team. The Personal Values and Norms instrument showed in the emergent change team a decreased hierarchic score and increased developmental and rational scores. In the planned change team the hierarchical and group scores were increased. Learning as a team did not differ between the teams. In both teams there was a change in clinical autonomy and orientation towards nursing activities, in line with the experimental conditions. Emergent change implementation resulted in more clinical autonomy than planned change implementation. If an innovation requires the nurses to make their own clinical decisions, an emergent change implementation should help to establish this clinical autonomy. © 2015 British Association of Critical Care Nurses.

Clinical decision-making: predictors of patient participation in nursing care.

PubMed

Florin, Jan; Ehrenberg, Anna; Ehnfors, Margareta

2008-11-01

To investigate predictors of patients' preferences for participation in clinical decision-making in inpatient nursing care. Patient participation in decision-making in nursing care is regarded as a prerequisite for good clinical practice regarding the person's autonomy and integrity. A cross-sectional survey of 428 persons, newly discharged from inpatient care. The survey was conducted using the Control Preference Scale. Multiple logistic regression analysis was used for testing the association of patient characteristics with preferences for participation. Patients, in general, preferred adopting a passive role. However, predictors for adopting an active participatory role were the patient's gender (odds ratio = 1.8), education (odds ratio = 2.2), living condition (odds ratio = 1.8) and occupational status (odds ratio = 2.0). A probability of 53% was estimated, which female senior citizens with at least a high school degree and who lived alone would prefer an active role in clinical decision-making. At the same time, a working cohabiting male with less than a high school degree had a probability of 8% for active participation in clinical decision making in nursing care. Patient preferences for participation differed considerably and are best elicited by assessment of the individual patient. Relevance to clinical practice. The nurses have a professional responsibility to act in such a way that patients can participate and make decisions according to their own values from an informed position. Access to knowledge of patients'basic assumptions and preferences for participation is of great value for nurses in the care process. There is a need for nurses to use structured methods and tools for eliciting individual patient preferences regarding participation in clinical decision-making.

Who gets a lung transplant? Assessing the psychosocial decision-making process for transplant listing

PubMed Central

Skillings, Jared Lyon

In the United States, there is a significant shortage of available donor organs. This requires transplant professionals to hold simultaneous, yet divergent roles as (1) advocates for patients who are in need of a lifesaving transplant, and (2) responsible stewards in the allocation of scarce donor organs. In order to balance these roles, most transplant teams utilize a committee based decision-making process to select suitable candidates for the transplant waiting list. These committees use medical and psychosocial criteria to guide their decision to list a patient. Transplant regulatory bodies have established medical standards for identifying appropriate medical candidates for transplantation. However, transplant regulatory bodies have not developed policies to standardize psychosocial criteria for listing patients. This affords transplant centers the autonomy to develop their own psychosocial criteria for determining which patients will be placed on the transplant waiting list. This lack of a standardized policy has resulted in inconsistent psychosocial practices amongst transplant centers nationwide. Since there has been no formal review of the inconsistency in psychosocial policy and practice, this paper seeks to explore the non-standardized psychosocial approach to organ transplant listing. The authors review factors that are relevant to the standardization of the psychosocial decision-making process, including shared decision-making, clinician judgment, bias in decision-making and moral distress in transplant staff. We conclude with a discussion about the impact of these issues on psychosocial practices in solid organ transplantation. PMID:29043272

Supportive Care: Communication Strategies to Improve Cultural Competence in Shared Decision Making.

PubMed

Brown, Edwina A; Bekker, Hilary L; Davison, Sara N; Koffman, Jonathan; Schell, Jane O

2016-10-07

Historic migration and the ever-increasing current migration into Western countries have greatly changed the ethnic and cultural patterns of patient populations. Because health care beliefs of minority groups may follow their religion and country of origin, inevitable conflict can arise with decision making at the end of life. The principles of truth telling and patient autonomy are embedded in the framework of Anglo-American medical ethics. In contrast, in many parts of the world, the cultural norm is protection of the patient from the truth, decision making by the family, and a tradition of familial piety, where it is dishonorable not to do as much as possible for parents. The challenge for health care professionals is to understand how culture has enormous potential to influence patients' responses to medical issues, such as healing and suffering, as well as the physician-patient relationship. Our paper provides a framework of communication strategies that enhance crosscultural competency within nephrology teams. Shared decision making also enables clinicians to be culturally competent communicators by providing a model where clinicians and patients jointly consider best clinical evidence in light of a patient's specific health characteristics and values when choosing health care. The development of decision aids to include cultural awareness could avoid conflict proactively, more productively address it when it occurs, and enable decision making within the framework of the patient and family cultural beliefs. Copyright © 2016 by the American Society of Nephrology.

The Counseling, Self-Care, Adherence Approach to Person-Centered Care and Shared Decision Making: Moral Psychology, Executive Autonomy, and Ethics in Multi-Dimensional Care Decisions.

PubMed

Herlitz, Anders; Munthe, Christian; Törner, Marianne; Forsander, Gun

2016-08-01

This article argues that standard models of person-centred care (PCC) and shared decision making (SDM) rely on simplistic, often unrealistic assumptions of patient capacities that entail that PCC/SDM might have detrimental effects in many applications. We suggest a complementary PCC/SDM approach to ensure that patients are able to execute rational decisions taken jointly with care professionals when performing self-care. Illustrated by concrete examples from a study of adolescent diabetes care, we suggest a combination of moral and psychological considerations to support the claim that standard PCC/SDM threatens to systematically undermine its own goals. This threat is due to a tension between the ethical requirements of SDM in ideal circumstances and more long-term needs actualized by the context of self-care handled by patients with limited capacities for taking responsibility and adhere to their own rational decisions. To improve this situation, we suggest a counseling, self-care, adherence approach to PCC/SDM, where more attention is given to how treatment goals are internalized by patients, how patients perceive choice situations, and what emotional feedback patients are given. This focus may involve less of a concentration on autonomous and rational clinical decision making otherwise stressed in standard PCC/SDM advocacy.

Multigenre Writing: A Ventana on the Possibility of Activating Voice and Increasing Self-Efficacy and Motivation in a High School Classroom

ERIC Educational Resources Information Center

Mungons, Renee L.

2012-01-01

Multigenre writing is defined as a collection of pieces written in a variety of genres but centered on one topic. It is distinctively different from traditional research writing in that the writer has autonomy to select a topic of interest, determine which genres will best express the information and make decisions throughout the writing process.…

Human-Robot Interaction: A Survey

DTIC Science & Technology

2007-01-01

breaks with the monolithic sense- plan -act loop of a centralized system, and instead uses distributed sense-response loops to generate appropriate...one of the first modern robots, cour- tesy of SRI International, Menlo Park, CA [279]; Kismet — an anthropomorphic robot with exaggerated emotion...linguis- tics. A common autonomy approach is sometimes referred to as the sense- plan -act model of decision-making [196]. This model has been a target

Modelling of internal architecture of kinesin nanomotor as a machine language.

PubMed

Khataee, H R; Ibrahim, M Y

2012-09-01

Kinesin is a protein-based natural nanomotor that transports molecular cargoes within cells by walking along microtubules. Kinesin nanomotor is considered as a bio-nanoagent which is able to sense the cell through its sensors (i.e. its heads and tail), make the decision internally and perform actions on the cell through its actuator (i.e. its motor domain). The study maps the agent-based architectural model of internal decision-making process of kinesin nanomotor to a machine language using an automata algorithm. The applied automata algorithm receives the internal agent-based architectural model of kinesin nanomotor as a deterministic finite automaton (DFA) model and generates a regular machine language. The generated regular machine language was acceptable by the architectural DFA model of the nanomotor and also in good agreement with its natural behaviour. The internal agent-based architectural model of kinesin nanomotor indicates the degree of autonomy and intelligence of the nanomotor interactions with its cell. Thus, our developed regular machine language can model the degree of autonomy and intelligence of kinesin nanomotor interactions with its cell as a language. Modelling of internal architectures of autonomous and intelligent bio-nanosystems as machine languages can lay the foundation towards the concept of bio-nanoswarms and next phases of the bio-nanorobotic systems development.

Physician-assisted suicide of patients with dementia. A medical ethical analysis with a special focus on patient autonomy.

PubMed

Gather, Jakov; Vollmann, Jochen

2013-01-01

For many years there has been a controversial international debate on physician-assisted suicide (PAS). While proponents of PAS regularly refer to the unbearable suffering and the right of self-determination of incurably ill patients, critics often warn about the diverse risks of abuse. In our article, we aim to present ethical arguments for and against PAS for patients in an early stage of dementia. Our focus shall be on ethical questions of autonomy, conceptual and empirical findings on competence and the assessment of mental capacity to make health care decisions. While the capacity to make health care decisions represents an ethically significant precondition for PAS, it becomes more and more impaired in the course of the dementia process. We present conditions that should be met in order to ethically justify PAS for patients with dementia. From both a psychiatric and an ethical perspective, a thorough differential diagnosis and an adequate medical and psychosocial support for patients with dementia considering PAS and their relatives should be guaranteed. If, after due deliberation, the patient still wishes assistance with suicide, a transparent and documented assessment of competence should be conducted by a professional psychiatrist. Copyright © 2013 Elsevier Ltd. All rights reserved.

Methodology for Prototyping Increased Levels of Automation for Spacecraft Rendezvous Functions

NASA Technical Reports Server (NTRS)

Hart, Jeremy J.; Valasek, John

2007-01-01

The Crew Exploration Vehicle necessitates higher levels of automation than previous NASA vehicles, due to program requirements for automation, including Automated Rendezvous and Docking. Studies of spacecraft development often point to the locus of decision-making authority between humans and computers (i.e. automation) as a prime driver for cost, safety, and mission success. Therefore, a critical component in the Crew Exploration Vehicle development is the determination of the correct level of automation. To identify the appropriate levels of automation and autonomy to design into a human space flight vehicle, NASA has created the Function-specific Level of Autonomy and Automation Tool. This paper develops a methodology for prototyping increased levels of automation for spacecraft rendezvous functions. This methodology is used to evaluate the accuracy of the Function-specific Level of Autonomy and Automation Tool specified levels of automation, via prototyping. Spacecraft rendezvous planning tasks are selected and then prototyped in Matlab using Fuzzy Logic techniques and existing Space Shuttle rendezvous trajectory algorithms.

Autonomy and Privacy in Clinical Laboratory Science Policy and Practice.

PubMed

Leibach, Elizabeth Kenimer

2014-01-01

Rapid advancements in diagnostic technologies coupled with growth in testing options and choices mandate the development of evidence-based testing algorithms linked to the care paths of the major chronic diseases and health challenges encountered most frequently. As care paths are evaluated, patient/consumers become partners in healthcare delivery. Clinical laboratory scientists find themselves firmly embedded in both quality improvement and clinical research with an urgent need to translate clinical laboratory information into knowledge required by practitioners and patient/consumers alike. To implement this patient-centered care approach in clinical laboratory science, practitioners must understand their roles in (1) protecting patient/consumer autonomy in the healthcare informed consent process and (2) assuring patient/consumer privacy and confidentiality while blending quality improvement study findings with protected health information. A literature review, describing the current ethical environment, supports a consultative role for clinical laboratory scientists in the clinical decision-making process and suggests guidance for policy and practice regarding the principle of autonomy and its associated operational characteristics: informed consent and privacy.

The relationship between individualistic, collectivistic, and transitional cultural value orientations and adolescents' autonomy and identity status.

PubMed

Lee, Chien-Ti; Beckert, Troy E; Goodrich, Thane R

2010-08-01

In an effort to validate the use of a Western model of adolescent development with Asian youth, 781 urban and rural Taiwanese high school students (56% female) completed questionnaires about their development. Adolescents were first divided into cultural value orientations (i.e. collectivistic, individualistic, or transitional) and compared geographically. There were statistically significant differences in cultural value orientations only for rural youth. Identity statuses and levels of cognitive autonomy were then compared according to cultural value orientations and gender. Adolescents who self-identified as collectivistic were significantly more likely to self-identify as achieved rather than diffused compared to transitional adolescents. Gender, more than cultural value identifications, significantly differentiated these youth in regard to issues of cognitive autonomy measured in this study (i.e. evaluative thinking, voicing opinions, making decisions, self-assessing, and comparative validation). Taken in whole, these findings support the use of a Western model of adolescent development for Taiwanese youth.

Patient participation in palliative care decisions: An ethnographic discourse analysis

PubMed Central

Bélanger, Emmanuelle; Rodríguez, Charo; Groleau, Danielle; Légaré, France; MacDonald, Mary Ellen; Marchand, Robert

2016-01-01

The participation of patients in making decisions about their care is especially important towards the end of life because palliative care decisions involve extensive uncertainty and are heavily influenced by personal values. Yet, there is a scarcity of studies directly observing clinical interactions between palliative patients and their health care providers. In this study, we aimed to understand how patient participation in palliative care decisions is constructed through discourse in a community hospital-based palliative care team. This qualitative study combined ethnographic observations of a palliative care team with discourse analysis. Eighteen palliative care patients with cancer diagnoses, six family physicians, and two nurses were involved in the study. Multiple interactions were observed between each patient and health care providers over the course of 1 year, for a total of 101 consultations, 24 of which were audio-recorded. The analysis consisted in looking for the interpretive repertoires (i.e., familiar lines of argument used to justify actions) that were used to justify patient participation in decision-making during clinical interactions, as well as exploring their implications for decision roles and end-of-life care. Patients and their health care providers seldom addressed their decision-making roles explicitly. Rather, they constructed patient participation in palliative care decisions in a covert manner. Four interpretive repertoires were used to justify patient participation: (1) exposing uncertainty, (2) co-constructing patient preferences, (3) affirming patient autonomy, and finally (4) upholding the authority of health care providers. The results demonstrate how patients and health care providers used these arguments to negotiate their respective roles in decision-making. In conclusion, patients and health care providers used a variety of interpretive repertoires to covertly negotiate their roles in decision-making, and to legitimize decisions that shaped patients’ dying trajectories. Discourse analysis encourages awareness of the role of language in either promoting or hindering patient participation in decision-making. PMID:27882864

Patient participation in palliative care decisions: An ethnographic discourse analysis.

PubMed

Bélanger, Emmanuelle; Rodríguez, Charo; Groleau, Danielle; Légaré, France; MacDonald, Mary Ellen; Marchand, Robert

2016-01-01

The participation of patients in making decisions about their care is especially important towards the end of life because palliative care decisions involve extensive uncertainty and are heavily influenced by personal values. Yet, there is a scarcity of studies directly observing clinical interactions between palliative patients and their health care providers. In this study, we aimed to understand how patient participation in palliative care decisions is constructed through discourse in a community hospital-based palliative care team. This qualitative study combined ethnographic observations of a palliative care team with discourse analysis. Eighteen palliative care patients with cancer diagnoses, six family physicians, and two nurses were involved in the study. Multiple interactions were observed between each patient and health care providers over the course of 1 year, for a total of 101 consultations, 24 of which were audio-recorded. The analysis consisted in looking for the interpretive repertoires (i.e., familiar lines of argument used to justify actions) that were used to justify patient participation in decision-making during clinical interactions, as well as exploring their implications for decision roles and end-of-life care. Patients and their health care providers seldom addressed their decision-making roles explicitly. Rather, they constructed patient participation in palliative care decisions in a covert manner. Four interpretive repertoires were used to justify patient participation: (1) exposing uncertainty, (2) co-constructing patient preferences, (3) affirming patient autonomy, and finally (4) upholding the authority of health care providers. The results demonstrate how patients and health care providers used these arguments to negotiate their respective roles in decision-making. In conclusion, patients and health care providers used a variety of interpretive repertoires to covertly negotiate their roles in decision-making, and to legitimize decisions that shaped patients' dying trajectories. Discourse analysis encourages awareness of the role of language in either promoting or hindering patient participation in decision-making.

What does respect for the patient's autonomy require?

PubMed

Cheng, Kam-Yuen

2013-11-01

Personal autonomy presupposes the notion of rationality. What is not so clear is whether, and how, a compromise of rationality to various degrees will diminish a person's autonomy. In bioethical literature, three major types of threat to the rationality of a patient's medical decision are identified: insufficient information, irrational beliefs/desires, and influence of different framing effects. To overcome the first problem, it is suggested that patients be provided with information about their diseases and treatment choices according to the objective standard. I shall explain how this should be finessed. Regarding the negative impact of irrational beliefs/desires, some philosophers have argued that holding irrational beliefs can still be an expression of autonomy. I reject this argument because the degree of autonomy of a decision depends on the degree of rationality of the beliefs or desires on which the decision is based. Hence, to promote patient autonomy, we need to eliminate irrational beliefs by the provision of evidence and good arguments. Finally, I argue that the way to smooth out the framing effects is to present the same information in different perspectives: it is too often assumed that medical information can always be given in a complete and unadorned manner. This article concludes with a cautionary note that the protection of patient autonomy requires much more time and effort than the current practice usually allows. © 2012 John Wiley & Sons Ltd.

Patients' participation in decision-making in the medical field--'projectification' of patients in a neoliberal framed healthcare system.

PubMed

Glasdam, Stinne; Oeye, Christine; Thrysoee, Lars

2015-10-01

This article focuses on patients' participation in decision-making in meetings with healthcare professionals in a healthcare system, based on neoliberal regulations and ideas. Drawing on two constructed empirical cases, primarily from the perspective of patients, this article analyses and discusses the clinical practice around decision-making meetings within a Foucauldian perspective. Patients' participation in decision-making can be seen as an offshoot of respect for patient autonomy. A treatment must be chosen, when patients consult physicians. From the perspective of patients, there is a tendency for healthcare professionals to supply the patients with the information that they think are necessary for them to make their own decision. But patients do not always want to be a 'customer' in the healthcare system; they want to be a patient, consulting an expert for help and advice, which creates resistance to some parts of the decision-making process. Both professionals and patients are subject to the structural frame of the medical field, formed of both neoliberal framework and medical logic. The decision-making competence in relation to the choice of treatment is placed away from the professionals and seen as belonging to the patient. A 'projectification' of the patient occurs, whereby the patient becomes responsible for his/her choices in treatment and care and the professionals support him/her with knowledge, preferences, and alternative views, out of which he/she must make his/her own choices, and the responsibility for those choices now and in the future. At the same time, there is a tendency towards de-professionalization. In that light, participation of patients in decision-making can be regarded as a tacit governmentality strategy that shapes the location of responsibility between individual and society, and independent patients and healthcare professionals, despite the basically desirable, appropriate, and necessary idea of involving patients in their own situations from a humanistic perspective. © 2015 John Wiley & Sons Ltd.

Nudge or Grudge? Choice Architecture and Parental Decision-Making.

PubMed

Blumenthal-Barby, Jennifer; Opel, Douglas J

2018-03-01

Richard Thaler and Cass Sunstein define a nudge as "any aspect of the choice architecture that alters people's behavior in a predictable way without forbidding any options or significantly changing their economic incentives." Much has been written about the ethics of nudging competent adult patients. Less has been written about the ethics of nudging surrogates' decision-making and how the ethical considerations and arguments in that context might differ. Even less has been written about nudging surrogate decision-making in the context of pediatrics, despite fundamental differences that exist between the pediatric and adult contexts. Yet, as the field of behavioral economics matures and its insights become more established and well-known, nudges will become more crafted, sophisticated, intentional, and targeted. Thus, the time is now for reflection and ethical analysis regarding the appropriateness of nudges in pediatrics. We argue that there is an even stronger ethical justification for nudging in parental decision-making than with competent adult patients deciding for themselves. We give three main reasons in support of this: (1) child patients do not have autonomy that can be violated (a concern with some nudges), and nudging need not violate parental decision-making authority; (2) nudging can help fulfill pediatric clinicians' obligations to ensure parental decisions are in the child's interests, particularly in contexts where there is high certainty that a recommended intervention is low risk and of high benefit; and (3) nudging can relieve parents' decisional burden regarding what is best for their child, particularly with decisions that have implications for public health. © 2018 The Hastings Center.

First birth and the trajectory of women's empowerment in Egypt.

PubMed

Samari, Goleen

2017-11-08

Women's empowerment is often used to explain changes in reproductive behavior, but no consideration is given to how reproductive events can shape women's empowerment over time. Fertility may cause changes in women's empowerment, or they may be mutually influencing. Research on women's empowerment and fertility relies on cross-sectional data from South Asia, which limits the understanding of the direction of association between women's empowerment and fertility in other global contexts. This study uses two waves of a panel survey from a prominent Middle Eastern country, Egypt, to examine the trajectory of women's empowerment and the relationship between first and subsequent births and empowerment over time. Using longitudinal data from the 2006 and 2012 Egyptian Labor Market Panel Survey, a nationally representative sample of households in Egypt, for 4660 married women 15 to 49 years old, multilevel negative binomial, ordinary least squares, and logistic regression models estimate women's empowerment and consider whether a first and subsequent births are associated with empowerment later in life. Women's empowerment is operationalized through four measures of agency: individual household decision-making, joint household decision-making, mobility, and financial autonomy. A first birth and subsequent births are significantly positively associated with all measures of empowerment except financial autonomy in 2012. Women who have not had a birth make 30% fewer individual household decisions and 14% fewer joint household decisions in 2012 compared to women with a first birth. There is also a positive relationship with mobility, as women with a first birth have more freedom of movement compared to women with no births. Earlier empowerment is also an important predictor of empowerment later in life. Incorporating the influence of life events like first and subsequent births helps account for the possibility that empowerment is dynamic and that life course experiences shape women's empowerment. This and the notion that empowerment builds over time helps portray women's lives more completely, demonstrates the importance of empowerment early in the life course, and addresses issues of temporality in empowerment fertility research.

TRACEY AND RESPECT FOR AUTONOMY: WILL THE PROMISE BE DELIVERED?

PubMed

Samanta, Jo

2015-01-01

The central issue of the Court of Appeal decision in R (Tracey) v Cambridge University Hospitals NHS Foundation Trust & Ors [2014] EWCA Civ 822 concerned whether competent adults should be involved in the decision-making process for Do Not Attempt Cardio-Pulmonary Resuscitation (DNACPR) decisions. These are sensitive decisions made on the basis that cardio-pulmonary resuscitation would be futile, or that efforts to resuscitate would not be in the best clinical interests of the person concerned. The Court held that patient involvement in DNACPR decisions should be the presumption, even if clinicians sincerely believed that resuscitation would be futile, unless that involvement would cause actual psychological or physical harm. This case commentary explores the potential implications of this decision in the context of contemporary healthcare. © The Author 2015. Published by Oxford University Press; all rights reserved. For Permissions, please email: journals.permissions@oup.com.

Nudges in a post-truth world.

PubMed

Levy, Neil

2017-08-01

Nudges-policy proposals informed by work in behavioural economics and psychology that are designed to lead to better decision-making or better behaviour-are controversial. Critics allege that they bypass our deliberative capacities, thereby undermining autonomy and responsible agency. In this paper, I identify a kind of nudge I call a nudge to reason, which make us more responsive to genuine evidence. I argue that at least some nudges to reason do not bypass our deliberative capacities. Instead, use of these nudges should be seen as appeals to mechanisms partially constitutive of these capacities, and therefore as benign (so far as autonomy and responsible agency are concerned). I sketch some concrete proposals for nudges to reason which are especially important given the apparent widespread resistance to evidence seen in recent political events. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/.

"Fiefdoms" and co-management: the paradox of autonomy in an experience of democratization of hospital management.

PubMed

da Silva, Atila Mendes; Sá, Marilene de Castilho; Miranda, Lilian

2015-10-01

This study aimed to analyze the implementation of Management Committees and Production Units in a hospital in Rio de Janeiro based on the views of the actors responsible for this process, focusing on the issue of autonomy of the subjects involved in care delivery. This case study adopted a qualitative clinical psychosociological research approach using mainly semi-structured interviews. The management arrangements were valued by the interviewees principally as a way of increasing worker commitment, since the inclusion of workers in the Management Committees is likely to widen decision-making capacity and, at the same time, make staff more committed to care delivery. On the other hand, workers mentioned resistance arising from a struggle to maintain the concentration of power within the professional categories, and the challenge of dealing with differing conflicts of interests. The study suggests that the Management Committees and Production Units should include possibilities of addressing conflicts and intersubjective processes to avoid becoming excessively idealized and ineffective spaces.

Autonomy, liberalism and advance care planning.

PubMed Central

Ikonomidis, S; Singer, P A

1999-01-01

The justification for advance directives is grounded in the notion that they extend patient autonomy into future states of incompetency through patient participation in decision making about end-of-life care. Four objections challenge the necessity and sufficiency of individual autonomy, perceived to be a defining feature of liberal philosophical theory, as a basis of advance care planning. These objections are that the liberal concept of autonomy (i) implies a misconception of the individual self, (ii) entails the denial of values of social justice, (iii) does not account for justifiable acts of paternalism, and (iv) does not account for the importance of personal relationships in the advance care planning process. The last objection is especially pertinent in light of recent empirical research highlighting the importance of personal relationships in advance care planning. This article examines these four objections to autonomy, and the liberal theoretical framework with which it is associated, in order to re-evaluate the philosophical basis of advance care planning. We argue that liberal autonomy (i) is not a misconceived concept as critics assume, (ii) does not entail the denial of values of social justice, (iii) can account for justifiable acts of paternalism, though it (iv) is not the best account of the value of personal relationships that arise in advance care planning. In conclusion, we suggest that liberalism is a necessary component of a theoretical framework for advance care planning but that it needs to be supplemented with theories that focus explicitly on the significance of personal relationships. PMID:10635509

The Voluntary Nature of Decision-Making in Addiction: Static Metaphysical Views Versus Epistemologically Dynamic Views.

PubMed

Racine, Eric; Rousseau-Lesage, Simon

2017-06-01

The degree of autonomy present in the choices made by individuals with an addiction, notably in the context of research, is unclear and debated. Some have argued that addiction, as it is commonly understood, prevents people from having sufficient decision-making capacity or self-control to engage in choices involving substances to which they have an addiction. Others have criticized this position for being too radical and have counter-argued in favour of the full autonomy of people with an addiction. Aligning ourselves with middle-ground positions between these two extremes, we flesh out an account of voluntary action that makes room for finer-grained analyses than the proposed all-or-nothing stances, which rely on a rather static metaphysical understanding of the nature of the voluntariness of action. In contrast, a dynamic concept of voluntary action better accounts for varying levels of voluntariness of the person with an addiction which takes into consideration internal (e.g. cravings) and external (e.g. perceptions of degrees of freedom related to different options) determinants of choice. Accordingly, like other components of autonomous choices such as level of information, voluntariness can fluctuate. Therefore, there are important implications for research and clinical ethics in matters of consent, recruitment, and therapeutic approaches. Overall, our proposal is inspired by a pragmatist understanding of voluntary action, notably with respect to how voluntariness is both informed by actions and experiences that shape one's view of the world. © 2017 John Wiley & Sons Ltd.

Healthcare decision-making in end stage renal disease-patient preferences and clinical correlates.

PubMed

Jayanti, Anuradha; Neuvonen, Markus; Wearden, Alison; Morris, Julie; Foden, Philip; Brenchley, Paul; Mitra, Sandip

2015-11-14

Medical decision-making is critical to patient survival and well-being. Patients with end stage renal disease (ESRD) are faced with incrementally complex decision-making throughout their treatment journey. The extent to which patients seek involvement in the decision-making process and factors which influence these in ESRD need to be understood. 535 ESRD patients were enrolled into the cross-sectional study arm and 30 patients who started dialysis were prospectively evaluated. Patients were enrolled into 3 groups- 'predialysis' (group A), 'in-centre' haemodialysis (HD) (group B) and self-care HD (93 % at home-group C) from across five tertiary UK renal centres. The Autonomy Preference Index (API) has been employed to study patient preferences for information-seeking (IS) and decision-making (DM). Demographic, psychosocial and neuropsychometric assessments are considered for analyses. 458 complete responses were available. API items have high internal consistency in the study population (Cronbach's alpha > 0.70). Overall and across individual study groups, the scores for information-seeking and decision-making are significantly different indicating that although patients had a strong preference to be well informed, they were more neutral in their preference to participate in DM (p < 0.05). In the age, education and study group adjusted multiple linear regression analysis, lower age, female gender, marital status; higher API IS scores and white ethnicity background were significant predictors of preference for decision-making. DM scores were subdivided into tertiles to identify variables associated with high (DM > 70: and low DM (≤30) scores. This shows association of higher DM scores with lower age, lower comorbidity index score, higher executive brain function, belonging in the self-caring cohort and being unemployed. In the prospectively studied cohort of predialysis patients, there was no change in decision-making preference scores after commencement of dialysis. ESRD patients prefer to receive information, but this does not always imply active involvement in decision-making. By understanding modifiable and non-modifiable factors which affect patient preferences for involvement in healthcare decision-making, health professionals may acknowledge the need to accommodate individual patient preferences to the extent determined by the individual patient factors.

Navigating Decisional Discord: The Pediatrician’s Role When Child and Parents Disagree

PubMed Central

DuBois, James; Kodish, Eric; Wolfe, Joanne; Feudtner, Chris

2017-01-01

From the time when children enter the preteen years onward, pediatric medical decision-making can entail a complex interaction between child, parents, and pediatrician. When the child and parents disagree regarding medical decisions, the pediatrician has the challenging task of guiding the family to a final decision. Unresolved discord can affect family cohesiveness, patient adherence, and patient self-management. In this article, we outline 3 models for the pediatrician’s role in the setting of decisional discord: deference, advocative, and arbitrative. In the deference model, the pediatrician prioritizes parental decision-making authority. In the advocative model, the pediatrician advocates for the child’s preference in decision-making so long as the child’s decision is medically reasonable. In the arbitrative model, the pediatrician works to resolve the conflict in a balanced fashion. Although each model has advantages and disadvantages, the arbitrative model should serve as the initial model in nearly all settings. The arbitrative model is likely to reach the most beneficial decision in a manner that maintains family cohesiveness by respecting the authority of parents and the developing autonomy of children. We also highlight, however, occasions when the deference or advocative models may be more appropriate. Physicians should keep all 3 models available in their professional toolkit and develop the wisdom to deploy the right model for each particular clinical situation. PMID:28562285

Navigating Decisional Discord: The Pediatrician's Role When Child and Parents Disagree.

PubMed

Sisk, Bryan A; DuBois, James; Kodish, Eric; Wolfe, Joanne; Feudtner, Chris

2017-06-01

From the time when children enter the preteen years onward, pediatric medical decision-making can entail a complex interaction between child, parents, and pediatrician. When the child and parents disagree regarding medical decisions, the pediatrician has the challenging task of guiding the family to a final decision. Unresolved discord can affect family cohesiveness, patient adherence, and patient self-management. In this article, we outline 3 models for the pediatrician's role in the setting of decisional discord: deference, advocative, and arbitrative. In the deference model, the pediatrician prioritizes parental decision-making authority. In the advocative model, the pediatrician advocates for the child's preference in decision-making so long as the child's decision is medically reasonable. In the arbitrative model, the pediatrician works to resolve the conflict in a balanced fashion. Although each model has advantages and disadvantages, the arbitrative model should serve as the initial model in nearly all settings. The arbitrative model is likely to reach the most beneficial decision in a manner that maintains family cohesiveness by respecting the authority of parents and the developing autonomy of children. We also highlight, however, occasions when the deference or advocative models may be more appropriate. Physicians should keep all 3 models available in their professional toolkit and develop the wisdom to deploy the right model for each particular clinical situation. Copyright © 2017 by the American Academy of Pediatrics.

Beyond individualism: Is there a place for relational autonomy in clinical practice and research?

PubMed

Dove, Edward S; Kelly, Susan E; Lucivero, Federica; Machirori, Mavis; Dheensa, Sandi; Prainsack, Barbara

2017-09-01

The dominant, individualistic understanding of autonomy that features in clinical practice and research is underpinned by the idea that people are, in their ideal form, independent, self-interested and rational gain-maximising decision-makers. In recent decades, this paradigm has been challenged from various disciplinary and intellectual directions. Proponents of 'relational autonomy' in particular have argued that people's identities, needs, interests - and indeed autonomy - are always also shaped by their relations to others. Yet, despite the pronounced and nuanced critique directed at an individualistic understanding of autonomy, this critique has had very little effect on ethical and legal instruments in clinical practice and research so far. In this article, we use four case studies to explore to what extent, if at all, relational autonomy can provide solutions to ethical and practical problems in clinical practice and research. We conclude that certain forms of relational autonomy can have a tangible and positive impact on clinical practice and research. These solutions leave the ultimate decision to the person most affected, but encourage and facilitate the consideration of this person's care and responsibility for connected others.

How people with dementia and their families decide about moving to a care home and support their needs: development of a decision aid, a qualitative study.

PubMed

Lord, Kathryn; Livingston, Gill; Robertson, Sarah; Cooper, Claudia

2016-03-21

People with dementia and their relatives find decisions about the person with dementia living in a care home difficult. We interviewed 20 people with dementia or family carers around the time of this decision in order to design a decision-aid. Decision-makers balanced the competing priorities of remaining somewhere familiar, family's wish they remain at home, reduction of risk and effects on carer's and person with dementia's physical health. The person with dementia frequently resented their lack of autonomy as decisions about care home moves were made after insight and judgment were impaired. Family consultation usually helped carers but sometimes exacerbated tensions. Direct professional support was appreciated where it was available. There is a need for healthcare professionals to facilitate these conversations around decision-making and to include more than signposting to other organisations. There is a need for a healthcare professional facilitated decision-aid. This should detail what might change for the person with dementia and their carer, possible resources and alternatives and assist in facilitating discussion with the wider family; further research will develop and test a tool to facilitate decision making about place of care needs.

Nurse-physician collaboration and associations with perceived autonomy in Cypriot critical care nurses.

PubMed

Georgiou, Evanthia; Papathanassoglou, Elizabeth DE; Pavlakis, Andreas

2017-01-01

Increased nurse-physician collaboration is a factor in improved patient outcomes. Limited autonomy of nurses has been proposed as a barrier to collaboration. This study aims to explore nurse-physician collaboration and potential associations with nurses' autonomy and pertinent nurses' characteristics in adult intensive care units (ICUs) in Cyprus. Descriptive correlational study with sampling of the entire adult ICU nurses' population in Cyprus (five ICUs in four public hospitals, n = 163, response rate 88·58%). Nurse-physician collaboration was assessed by the Collaboration and Satisfaction About Care Decisions Scale (CSACD), and autonomy by the Varjus et al. scale. The average CSACD score was 36·36 ± 13·30 (range: 7-70), implying low levels of collaboration and satisfaction with care decisions. Male participants reported significantly lower CSACD scores (t = 2·056, p = 0·04). CSACD correlated positively with years of ICU nursing experience (r = 0·332, p < 0·0001) and professional satisfaction (r = 0·455, p < 0·0001). The mean autonomy score was 76·15 ± 16·84 (range: 18-108). Higher degree of perceived collaboration (CSACD scores) associated with higher autonomy scores (r = 0·508, p <0·0001). Our findings imply low levels of nurse-physician collaboration and satisfaction with care decisions and moderate levels of autonomy in ICU nurses in Cyprus. The results provide insight into the association between nurse-physician collaboration and nurses' autonomy and the correlating factors. © 2015 British Association of Critical Care Nurses.

Bioethics for clinicians: 18. Aboriginal cultures

PubMed Central

Ellerby, Jonathan H.; McKenzie, John; McKay, Stanley; Gariépy, Gilbert J.; Kaufert, Joseph M.

2000-01-01

Although philosophies and practices analogous to bioethics exist in Aboriginal cultures, the terms and categorical distinctions of "ethics" and "bioethics" do not generally exist. In this article we address ethical values appropriate to Aboriginal patients, rather than a preconceived "Aboriginal bioethic." Aboriginal beliefs are rooted in the context of oral history and culture. For Aboriginal people, decision-making is best understood as a process and not as the correct interpretation of a unified code. Aboriginal cultures differ from religious and cultural groups that draw on Scripture and textual foundations for their ethical beliefs and practices. Aboriginal ethical values generally emphasize holism, pluralism, autonomy, community- or family-based decision-making, and the maintenance of quality of life rather than the exclusive pursuit of a cure. Most Aboriginal belief systems also emphasize achieving balance and wellness within the domains of human life (mental, physical, emotional and spiritual). Although these bioethical tenets are important to understand and apply, examining specific applications in detail is not as useful as developing a more generalized understanding of how to approach ethical decision-making with Aboriginal people. Aboriginal ethical decisions are often situational and highly dependent on the values of the individual within the context of his or her family and community. PMID:11033715

Bioethics for clinicians: 18. Aboriginal cultures.

PubMed

Ellerby, J H; McKenzie, J; McKay, S; Gariépy, G J; Kaufert, J M

2000-10-03

Although philosophies and practices analogous to bioethics exist in Aboriginal cultures, the terms and categorical distinctions of "ethics" and "bioethics" do not generally exist. In this article we address ethical values appropriate to Aboriginal patients, rather than a preconceived "Aboriginal bioethic." Aboriginal beliefs are rooted in the context of oral history and culture. For Aboriginal people, decision-making is best understood as a process and not as the correct interpretation of a unified code. Aboriginal cultures differ from religious and cultural groups that draw on Scripture and textual foundations for their ethical beliefs and practices. Aboriginal ethical values generally emphasize holism, pluralism, autonomy, community- or family-based decision-making, and the maintenance of quality of life rather than the exclusive pursuit of a cure. Most Aboriginal belief systems also emphasize achieving balance and wellness within the domains of human life (mental, physical, emotional and spiritual). Although these bioethical tenets are important to understand and apply, examining specific applications in detail is not as useful as developing a more generalized understanding of how to approach ethical decision-making with Aboriginal people. Aboriginal ethical decisions are often situational and highly dependent on the values of the individual within the context of his or her family and community.

Ethical Information Transparency and Sexually Transmitted Infections.

PubMed

Feltz, Adam

2015-01-01

Shared decision making is intended to help protect patient autonomy while satisfying the demands of beneficence. In shared decision making, information is shared between health care professional and patient. The sharing of information presents new and practical problems about how much information to share and how transparent that information should be. Sharing information also allows for subtle paternalistic strategies to be employed to "nudge" the patient in a desired direction. These problems are illustrated in two experiments. Experiment 1 (N = 146) suggested that positively framed messages increased the strength of judgments about whether a patient with HIV should designate a surrogate compared to a negatively framed message. A simple decision aid did not reliably reduce this effect. Experiment 2 (N = 492) replicated these effects. In addition, Experiment 2 suggested that providing some additional information (e.g., about surrogate decision making accuracy) can reduce tendencies to think that one with AIDS should designate a surrogate. These results indicate that in some circumstances, nudges (e.g., framing) influence judgments in ways that non-nudging interventions (e.g., simple graphs) do not. While non-nudging interventions are generally preferable, careful thought is required for determining the relative benefits and costs associated with information transparency and persuasion.

Women's role in sanitation decision making in rural coastal Odisha, India.

PubMed

Routray, Parimita; Torondel, Belen; Clasen, Thomas; Schmidt, Wolf-Peter

2017-01-01

While women and girls face special risks from lack of access to sanitation facilities, their ability to participate and influence household-level sanitation is not well understood. This paper examines the association between women's decision-making autonomy and latrine construction in rural areas of Odisha, India. We conducted a mixed-method study among rural households in Puri district. This included a cross sectional survey among 475 randomly selected households. These were classified as either having a functional latrine, a non-functional latrine or no latrine at all. We also conducted 17 in-depth interviews and 9 focus group discussions among household members of these three categories of households. Decisions on the construction of household level sanitation facilities were made exclusively by the male head in 80% of households; in 11% the decision was made by men who consulted or otherwise involved women. In only 9% of households the decision was made by women. Households where women were more involved in general decision making processes were no more likely to build a latrine, compared to households where they were excluded from decisions. Qualitative research revealed that women's non-involvement in sanitation decision making is attributed to their low socio-economic status and inability to influence the household's financial decisions. Female heads lacked confidence to take decisions independently, and were dependent on their spouse or other male family members for most decisions. The study revealed the existence of power hierarchies and dynamics within households, which constrained female's participation in decision-making processes regarding sanitation. Though governments and implementers emphasize women's involvement in sanitation programmes, socio-cultural factors and community and household level dynamics often prevent women from participating in sanitation-related decisions. Measures are needed for strengthening sanitation policies and effective implementation of programmes to address gender power relations and familial relationships that influence latrine adoption and use.

Women's role in sanitation decision making in rural coastal Odisha, India

PubMed Central

Torondel, Belen; Clasen, Thomas; Schmidt, Wolf-Peter

2017-01-01

Background While women and girls face special risks from lack of access to sanitation facilities, their ability to participate and influence household-level sanitation is not well understood. This paper examines the association between women's decision-making autonomy and latrine construction in rural areas of Odisha, India. Methods We conducted a mixed-method study among rural households in Puri district. This included a cross sectional survey among 475 randomly selected households. These were classified as either having a functional latrine, a non-functional latrine or no latrine at all. We also conducted 17 in-depth interviews and 9 focus group discussions among household members of these three categories of households. Results Decisions on the construction of household level sanitation facilities were made exclusively by the male head in 80% of households; in 11% the decision was made by men who consulted or otherwise involved women. In only 9% of households the decision was made by women. Households where women were more involved in general decision making processes were no more likely to build a latrine, compared to households where they were excluded from decisions. Qualitative research revealed that women’s non-involvement in sanitation decision making is attributed to their low socio-economic status and inability to influence the household’s financial decisions. Female heads lacked confidence to take decisions independently, and were dependent on their spouse or other male family members for most decisions. The study revealed the existence of power hierarchies and dynamics within households, which constrained female’s participation in decision-making processes regarding sanitation. Conclusions Though governments and implementers emphasize women’s involvement in sanitation programmes, socio-cultural factors and community and household level dynamics often prevent women from participating in sanitation-related decisions. Measures are needed for strengthening sanitation policies and effective implementation of programmes to address gender power relations and familial relationships that influence latrine adoption and use. PMID:28542525

Applied Robotics for Installations and Base Operations: User Perceptions of a Driverless Vehicle at Fort Bragg

DTIC Science & Technology

2018-01-03

position unless so designated by other authorized documents. Citation of manufacturer’s or trade names does not constitute an official endorsement or...trust and acceptability of the vehicle autonomy, as well as design recommendations for increasing future passenger and pedestrian comfort and trust...of design features and capabilities to better communicate its decision-making processes and intent to passengers, pedestrians, and other road users

The Challenges of Human-Autonomy Teaming

NASA Technical Reports Server (NTRS)

Vera, Alonso

2017-01-01

Machine intelligence is improving rapidly based on advances in big data analytics, deep learning algorithms, networked operations, and continuing exponential growth in computing power (Moores Law). This growth in the power and applicability of increasingly intelligent systems will change the roles humans, shifting them to tasks where adaptive problem solving, reasoning and decision-making is required. This talk will address the challenges involved in engineering autonomous systems that function effectively with humans in aeronautics domains.

A Model of Supervisor Decision-Making in the Accommodation of Workers with Low Back Pain.

PubMed

Williams-Whitt, Kelly; Kristman, Vicki; Shaw, William S; Soklaridis, Sophie; Reguly, Paula

2016-09-01

Purpose To explore supervisors' perspectives and decision-making processes in the accommodation of back injured workers. Methods Twenty-three semi-structured, in-depth interviews were conducted with supervisors from eleven Canadian organizations about their role in providing job accommodations. Supervisors were identified through an on-line survey and interviews were recorded, transcribed and entered into NVivo software. The initial analyses identified common units of meaning, which were used to develop a coding guide. Interviews were coded, and a model of supervisor decision-making was developed based on the themes, categories and connecting ideas identified in the data. Results The decision-making model includes a process element that is described as iterative "trial and error" decision-making. Medical restrictions are compared to job demands, employee abilities and available alternatives. A feasible modification is identified through brainstorming and then implemented by the supervisor. Resources used for brainstorming include information, supervisor experience and autonomy, and organizational supports. The model also incorporates the experience of accommodation as a job demand that causes strain for the supervisor. Accommodation demands affect the supervisor's attitude, brainstorming and monitoring effort, and communication with returning employees. Resources and demands have a combined effect on accommodation decision complexity, which in turn affects the quality of the accommodation option selected. If the employee is unable to complete the tasks or is reinjured during the accommodation, the decision cycle repeats. More frequent iteration through the trial and error process reduces the likelihood of return to work success. Conclusion A series of propositions is developed to illustrate the relationships among categories in the model. The model and propositions show: (a) the iterative, problem solving nature of the RTW process; (b) decision resources necessary for accommodation planning, and (c) the impact accommodation demands may have on supervisors and RTW quality.

Influences on decision making among primiparous women choosing elective caesarean section in the absence of medical indications: findings from a qualitative investigation.

PubMed

Kornelsen, Jude; Hutton, Eileen; Munro, Sarah

2010-10-01

Patient-initiated elective Caesarean section (PIECS) is increasingly prevalent and is emerging as an urgent issue for individual maternity practitioners, hospitals, and policy makers, as well as for maternity patients. This qualitative study sought to explore women's experiences of the decision-making process leading to elective operative delivery without medical indication. We conducted 17 exploratory qualitative in-depth interviews with primiparous women who had undergone a patient-initiated elective Caesarean section in the absence of any medical indication. The study took place in five hospitals (three urban, two semi-rural) in British Columbia. The findings revealed three themes within the process of women deciding to have a Caesarean section: the reasons for their decision, the qualities of the decision-making process, and the social context in which the decision was made. The factors that influenced a patient-initiated request for delivery by Caesarean section in participants in this study were diverse, culturally dependent, and reflective of varying degrees of emotional and evidence-based influences. PIECS is a rare but socially significant phenomenon. The a priori decision making of some women choosing PIECS does not follow the usual diagnosis-intervention trajectory, and the care provider may have to work in reverse to ensure that the patient fully understands the risks and benefits of her decision subsequent to the decision having been made, while still ensuring patient autonomy. Results from this study provide a context for a woman's request for an elective Caesarean section without medical indication, which may contribute to a more efficacious informed consent process.

Understanding communication pathways to foster community engagement for health improvement in North West Pakistan.

PubMed

Lhussier, Monique; Lowe, Nicola; Westaway, Elizabeth; Dykes, Fiona; McKeown, Mick; Munir, Akhtar; Tahir, Saba; Zaman, Mukhtiar

2016-07-18

This paper describes the community engagement process undertaken to ascertain the focus, development and implementation of an intervention to improve iodised salt consumption in rural communities in North West Pakistan. The Jirga is a traditional informal structure, which gathers men respected within their community and acts in a governing and decision-making capacity in the Pukhtoon culture. The Jirga system had a dual purpose for the study: to access men from the community to discuss the importance of iodised salt, and as an engagement process for the intervention. A number of qualitative data collection activities were undertaken, with Jirga members and their wives, male and female outreach workers and two groups of women, under and over 40 years old. The aim of these was to highlight the communication channels and levers of influence on health behaviour, which were multiple and complex and all needed to be taken into consideration in order to ensure successful and locally sensitive community engagement. Communication channels are described within local families and the communities around them. The key influential role of the Jirga is highlighted as linked both to the standing of its members and the community cohesion ethos that it embodies. Engaging Jirga members in discussions about iodised salt was key in designing an intervention that would activate the most influential levers to decision making in the community. Gendered decision-making processes within the household have been highlighted as restricting women's autonomy. Whilst in one respect our data confirm this, a more complex hierarchy of decisional power has been highlighted, whereby the concept of 'wisdom'- an amalgamation of age, experience and education- presents important possibilities. Community members with the least autonomy are the youngest uneducated females, who rely on a web of socially and culturally determined ways to influence decision-making. The major lines of communication and influence in the local community described are placed within the wider literature on community engagement in health improvement. The process of maximisation of local cultural knowledge as part of a community engagement effort is one that has application well beyond the particular setting of this study.

[What is purchased, how and from whom by Seguro Popular in Mexico? Experience with strategic purchasing at national level and in a pioneer institution].

PubMed

González-Block, Miguel Ángel

2017-01-01

To analyze the scope of demand subsidies through strategic purchasing of health services. Interviews and document analyses at national level and a case study of the state of Hidalgo. SPSS explicitly prioritizes interventions to be financed and regulates prices and expenditure ceilings. Public providers are predominantly funded through the purchasing of inputs and the contracting of human resources, in the absence of competition and with a low degree of managerial autonomy. Seguro Popular in Hidalgo has diversified service providers and payment mechanisms. SPSS has ample opportunity to extend and deepen strategic purchasing. Greater decision-making autonomy of payers and providers is required, as well as regulations to promote provider networks in competitive environments.

The Ethics of Information: Absolute Risk Reduction and Patient Understanding of Screening

PubMed Central

Meslin, Eric M.

2008-01-01

Some experts have argued that patients should routinely be told the specific magnitude and absolute probability of potential risks and benefits of screening tests. This position is motivated by the idea that framing risk information in ways that are less precise violates the ethical principle of respect for autonomy and its application in informed consent or shared decision-making. In this Perspective, we consider a number of problems with this view that have not been adequately addressed. The most important challenges stem from the danger that patients will misunderstand the information or have irrational responses to it. Any initiative in this area should take such factors into account and should consider carefully how to apply the ethical principles of respect for autonomy and beneficence. PMID:18421509

Food Culture, Preferences and Ethics in Dysphagia Management.

PubMed

Kenny, Belinda

2015-11-01

Adults with dysphagia experience difficulties swallowing food and fluids with potentially harmful health and psychosocial consequences. Speech pathologists who manage patients with dysphagia are frequently required to address ethical issues when patients' food culture and/ or preferences are inconsistent with recommended diets. These issues incorporate complex links between food, identity and social participation. A composite case has been developed to reflect ethical issues identified by practising speech pathologists for the purposes of illustrating ethical concerns in dysphagia management. The case examines a speech pathologist's role in supporting patient autonomy when patients and carers express different goals and values. The case presents a 68-year-old man of Australian/Italian heritage with severe swallowing impairment and strong values attached to food preferences. The case is examined through application of the dysphagia algorithm, a tool for shared decision-making when patients refuse dietary modifications. Case analysis revealed the benefits and challenges of shared decision-making processes in dysphagia management. Four health professional skills and attributes were identified as synonymous with shared decision making: communication, imagination, courage and reflection. © 2015 John Wiley & Sons Ltd.

Love as a regulative ideal in surrogate decision making.

PubMed

Stonestreet, Erica Lucast

2014-10-01

This discussion aims to give a normative theoretical basis for a "best judgment" model of surrogate decision making rooted in a regulative ideal of love. Currently, there are two basic models of surrogate decision making for incompetent patients: the "substituted judgment" model and the "best interests" model. The former draws on the value of autonomy and responds with respect; the latter draws on the value of welfare and responds with beneficence. It can be difficult to determine which of these two models is more appropriate for a given patient, and both approaches may seem inadequate for a surrogate who loves the patient. The proposed "best judgment" model effectively draws on the values incorporated in each of the traditional standards, but does so because these values are important to someone who loves a patient, since love responds to the patient as the specific person she is. © The Author 2014. Published by Oxford University Press, on behalf of the Journal of Medicine and Philosophy Inc. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

'It's time she stopped torturing herself': structural constraints to decision-making about life-sustaining treatment by medical trainees.

PubMed

Jenkins, Tania M

2015-05-01

This article explores how structural factors associated with the profession and organization of medicine can constrain internal medicine residents, leading them to sometimes limit or terminate treatment in end-of-life care in ways that do not always embrace patient autonomy. Specifically, it examines the opportunities and motivations that explain why residents sometimes arrogate decision-making for themselves about life-sustaining treatment. Using ethnographic data drawn from over two years at an American community hospital, I contend that unlike previous studies which aggregate junior and senior physicians' perspectives, medical trainees face unique constraints that can lead them to intentionally or unintentionally overlook patient preferences. This is especially salient in cases where they misunderstand their patients' wishes, disagree about what is in their best interest, and/or lack the standing to pursue alternative ethical approaches to resolving these tensions. The study concludes with recommendations that take into account the structural underpinnings of arrogance in decision-making about life-sustaining treatment. Copyright © 2015 Elsevier Ltd. All rights reserved.

Chinese familial tradition and Western influence: a case study in Singapore on decision making at the end of life.

PubMed

Ho, Zheng Jie Marc; Radha Krishna, Lalit Kumar; Yee, Chung Pheng Alethea

2010-12-01

Decision making for an incompetent patient at the end of life is difficult for both family members and physicians alike. Often, palliative care teams are tasked with weaving through opinions, emotions, and goals in search for an amenable solution. Occasionally, these situations get challenging. We present the case of an elderly Chinese Singaporean with metastatic cancer, whose family and physicians had conflicting goals of care. The former was adamant on treating the patient's disease with an untested drug, whereas the latter aimed to treat his symptoms with more conventional medication. Drug-drug interactions prevented treatment with both. Beginning with a discussion of the patient's best interest, we delve into the Singaporean context to show how culture affects medical decision making. Confucianism and filial piety are the values on which this family's workings were based. In an analysis of what this entails, we attempt to explain the significant and assertive family involvement in the decision-making process and their insistence on using novel medications, having exhausted conventional interventions. Within this mix were Western influences, too. Through the Internet, family members have become more informed and empowered in decision making, wresting the traditional paternalistic role of physicians in favor of "patient autonomy." An understanding of such dynamic facets will help better tailor culturally appropriate approaches to such complex situations. Copyright © 2010 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.

Toward increased autonomy in the surgical OR: needs, requests, and expectations.

PubMed

Kranzfelder, Michael; Staub, Christoph; Fiolka, Adam; Schneider, Armin; Gillen, Sonja; Wilhelm, Dirk; Friess, Helmut; Knoll, Alois; Feussner, Hubertus

2013-05-01

The current trend in surgery toward further trauma reduction inevitably leads to increased technological complexity. It must be assumed that this situation will not stay under the sole control of surgeons; mechanical systems will assist them. Certain segments of the work flow will likely have to be taken over by a machine in an automatized or autonomous mode. In addition to the analysis of our own surgical practice, a literature search of the Medline database was performed to identify important aspects, methods, and technologies for increased operating room (OR) autonomy. Robotic surgical systems can help to increase OR autonomy by camera control, application of intelligent instruments, and even accomplishment of automated surgical procedures. However, the important step from simple task execution to autonomous decision making is difficult to realize. Another important aspect is the adaption of the general technical OR environment. This includes adaptive OR setting and context-adaptive interfaces, automated tool arrangement, and optimal visualization. Finally, integration of peri- and intraoperative data consisting of electronic patient record, OR documentation and logistics, medical imaging, and patient surveillance data could increase autonomy. To gain autonomy in the OR, a variety of assistance systems and methodologies need to be incorporated that endorse the surgeon autonomously as a first step toward the vision of cognitive surgery. Thus, we require establishment of model-based surgery and integration of procedural tasks. Structured knowledge is therefore indispensable.

Clinical decision making for a tooth with apical periodontitis: the patients' preferred level of participation.

PubMed

Azarpazhooh, Amir; Dao, Thuan; Ungar, Wendy J; Chaudry, Faiza; Figueiredo, Rafael; Krahn, Murray; Friedman, Shimon

2014-06-01

To effectively engage patients in clinical decisions regarding the management of teeth with apical periodontitis (AP), there is a need to explore patients' perspectives on the decision-making process. This study surveyed patients for their preferred level of participation in making treatment decisions for a tooth with AP. Data were collected through a mail-out survey of 800 University of Toronto Faculty of Dentistry patients, complemented by a convenience sample of 200 patients from 10 community practices. The Control Preferences Scale was used to evaluate the patients' preferences for active, collaborative, or passive participation in treatment decisions for a tooth with AP. Using bivariate and logistic regression analyses, the Gelberg-Andersen Behavioral Model for Vulnerable Populations was applied to the Control Preferences Scale questions to understand the influential factors (P ≤ .05). Among 434 of 1,000 respondents, 44%, 40%, and 16% preferred an active, collaborative, and passive participation, respectively. Logistic regression showed a significant association (P ≤ .025) between participants' higher education and preference for active participation compared with a collaborative role. Also, immigrant status was significantly associated with preference for passive participation (P = .025). The majority of patients valued an active or collaborative participation in deciding treatment for a tooth with AP. This pattern implied a preference for a patient-centered practice mode that emphasizes patient autonomy in decision making. Copyright © 2014 American Association of Endodontists. Published by Elsevier Inc. All rights reserved.

A collaborative approach to supporting communication in the assessment of decision-making capacity.

PubMed

Zuscak, Simon John; Peisah, Carmelle; Ferguson, Alison

2016-01-01

This paper explores the clinical implications of acquired communication disorders in decisional capacity. Discipline-specific contributions are discussed in a multidisciplinary context, with a specific focus on the role of speech and language pathologists (SLPs). Key rehabilitation issues in determining decisional capacity are identified. The impact of communication impairment on capacity is discussed in light of the research literature relating to supportive communication and collaborative practice that respects human rights. Guidelines are presented for professionals involved in the assessment of the decisional capacity of individuals with communication disorders of neurological origin. They guide an assessor through: assessing cognition, language and speech; determining preferred communication domains; and practical strategies and considerations for maximising communication. There is a dearth of guidelines available that deal with augmenting and supporting communication of individuals with acquired communication disorders of neurological origin when it comes to assessing legal decision-making capacity. Capacity assessment is a multidisciplinary realm, and the involvement of SLPs is key to maximising the decision-making capacity of these individuals. All clinicians have an obligation to maximise client autonomy and participation in decision-making. Assessments of capacity should involve a general cognitive ability assessment, followed by a decision-specific assessment tool or question set for the decision facing the patient. The involvement of speech and language pathologists (SLPs) is key to assess and facilitate capacity determinations in instances of cognitive-communication disorder. Impairments in different aspects of auditory comprehension require different accommodations.

Patient empowerment as a component of health system reforms: rights, benefits and vested interests.

PubMed

Colombo, Cinzia; Moja, Lorenzo; Gonzalez-Lorenzo, Marien; Liberati, Alessandro; Mosconi, Paola

2012-04-01

Different strategies have been developed across countries to foster citizens' and patients' involvement, from health policies to patients' active participation in decisions regarding their health. The spectrum varies from systems where patients lead the reform of health care services, to others where a paternalistic approach still limits patients' autonomy in decision-making. This paper describes: (1) different interventions for involving patients; (2) experiences to promote consumer evidence-based advocacy; and (3) barriers to consumer involvement in health system reforms, including vested interests in patients' associations. Citizens' involvement in health systems can vary substantially, but is gaining increasing weight.

NASA Biomedical Informatics Capabilities and Needs

NASA Technical Reports Server (NTRS)

Johnson-Throop, Kathy A.

2009-01-01

To improve on-orbit clinical capabilities by developing and providing operational support for intelligent, robust, reliable, and secure, enterprise-wide and comprehensive health care and biomedical informatics systems with increasing levels of autonomy, for use on Earth, low Earth orbit & exploration class missions. Biomedical Informatics is an emerging discipline that has been defined as the study, invention, and implementation of structures and algorithms to improve communication, understanding and management of medical information. The end objective of biomedical informatics is the coalescing of data, knowledge, and the tools necessary to apply that data and knowledge in the decision-making process, at the time and place that a decision needs to be made.

Providers' gender and moral reasoning: a proposed agenda for research on providers and patients.

PubMed

Wertz, Dorothy C

1993-04-01

Women constitute 35% of providers in genetics, at the doctoral level. A survey of 682 geneticists in 19 nations showed that gender was the single most important determinant of ethical decision making. Women were less directive and more observant of patient autonomy than men. The future influx of women into medicine calls for research on provider gender and decisions. Research is also needed on women's and men's perceptions of abortion for genetic reasons, on extended families' views, on agreement between partners and on overall effectiveness of genetic counseling, including communication, elements of provider satisfaction, interpretation of risk and uncertainty after counseling.

Nurse supervisors' actions in relation to their decision-making style and ethical approach to clinical supervision.

PubMed

Berggren, Ingela; Severinsson, Elisabeth

2003-03-01

The aim of the study was to explore the decision-making style and ethical approach of nurse supervisors by focusing on their priorities and interventions in the supervision process. Clinical supervision promotes ethical awareness and behaviour in the nursing profession. A focus group comprised of four clinical nurse supervisors with considerable experience was studied using qualitative hermeneutic content analysis. The essence of the nurse supervisors' decision-making style is deliberations and priorities. The nurse supervisors' willingness, preparedness, knowledge and awareness constitute and form their way of creating a relationship. The nurse supervisors' ethical approach focused on patient situations and ethical principles. The core components of nursing supervision interventions, as demonstrated in supervision sessions, are: guilt, reconciliation, integrity, responsibility, conscience and challenge. The nurse supervisors' interventions involved sharing knowledge and values with the supervisees and recognizing them as nurses and human beings. Nurse supervisors frequently reflected upon the ethical principle of autonomy and the concept and substance of integrity. The nurse supervisors used an ethical approach that focused on caring situations in order to enhance the provision of patient care. They acted as role models, shared nursing knowledge and ethical codes, and focused on patient related situations. This type of decision-making can strengthen the supervisees' professional identity. The clinical nurse supervisors in the study were experienced and used evaluation decisions as their form of clinical decision-making activity. The findings underline the need for further research and greater knowledge in order to improve the understanding of the ethical approach to supervision.

Reproductive autonomy, the non-identity problem, and the non-person problem.

PubMed

DiSilvestro, Russell

2009-01-01

The Non-Identity Problem is the problem of explaining the apparent wrongness of a decision that does not harm people, especially since some of the people affected by the decision would not exist at all were it not for the decision. One approach to this problem, in the context of reproductive decisions, is to focus on wronging, rather than harming, one's offspring. But a Non-Person Problem emerges for any view that claims (1) that only persons can be wronged and (2) that the person-making properties allow for there to be human non-persons. Consider an individual human organism that is prevented from ever possessing the person-making properties. On person-only accounts of the victims of wronging, this organism cannot be wronged by anyone. Hence even individuals whose decisions prevent it from ever possessing the person-making properties cannot wrong it. But this is counter-intuitive. We can think of examples where a human organism is wronged by precisely those decisions that prevent it from possessing the person-making properties. The best solution to this problem, in the case where the person-making property is rational self-governance in pursuit of a meaningful life, is to adjust the concept of a person so that it refers, not merely to those with the immediate capacity for rational self-governance in pursuit of a meaningful life, but also to those with a higher-order capacity for such self-governance. Any solution to the Non-Identity Problem that focuses on wronging rather than harming should incorporate this sort of solution to the Non-Person Problem.

Shared Decision-making in the Emergency Department: Respecting Patient Autonomy When Seconds Count.

PubMed

Hess, Erik P; Grudzen, Corita R; Thomson, Richard; Raja, Ali S; Carpenter, Christopher R

2015-07-01

Shared decision-making (SDM), a collaborative process in which patients and providers make health care decisions together, taking into account the best scientific evidence available, as well as the patient's values and preferences, is being increasingly advocated as the optimal approach to decision-making for many health care decisions. The rapidly paced and often chaotic environment of the emergency department (ED), however, is a unique clinical setting that offers many practical and contextual challenges. Despite these challenges, in a recent survey emergency physicians reported there to be more than one reasonable management option for over 50% of their patients and that they take an SDM approach in 58% of such patients. SDM has also been selected as the topic on which to develop a future research agenda at the 2016 Academic Emergency Medicine consensus conference, "Shared Decision-making in the Emergency Department: Development of a Policy-relevant Patient-centered Research Agenda" (http://www.saem.org/annual-meeting/education/2016-aem-consensus-conference). In this paper the authors describe the conceptual model of SDM as originally conceived by Charles and Gafni and highlight aspects of the model relevant to the practice of emergency medicine. In addition, through the use of vignettes from the authors' clinical practices, the applicability of SDM to contemporary EM practice is illustrated and the ethical and pragmatic implications of taking an SDM approach are explored. It is hoped that this document will be read in advance of the 2016 Academic Emergency Medicine consensus conference, to facilitate group discussions at the conference. © 2015 by the Society for Academic Emergency Medicine.

Some comments on the substituted judgement standard.

PubMed

Egonsson, Dan

2010-02-01

On a traditional interpretation of the substituted judgement standard (SJS) a person who makes treatment decisions on behalf of a non-competent patient (e.g. concerning euthanasia) ought to decide as the patient would have decided had she been competent. I propose an alternative interpretation of SJS in which the surrogate is required to infer what the patient actually thought about these end-of-life decisions. In clarifying SJS it is also important to differentiate the patient's consent and preference. If SJS is part of an autonomy ideal of the sort found in Kantian ethics, consent seems more important than preference. From a utilitarian perspective a preference-based reading of SJS seems natural. I argue that the justification of SJS within a utilitarian framework will boil down to the question whether a non-competent patient can be said to have any surviving preferences. If we give a virtue-ethical justification of SJS the relative importance of consent and preferences depends on which virtue one stresses--respect or care. I argue that SJS might be an independent normative method for extending the patient's autonomy, both from a Kantian and a virtue ethical perspective.

Patients’ perceived purpose of clinical informed consent: Mill’s individual autonomy model is preferred

PubMed Central

2014-01-01

Background Although informed consent is an integral part of clinical practice, its current doctrine remains mostly a matter of law and mainstream ethics rather than empirical research. There are scarce empirical data on patients’ perceived purpose of informed consent, which may include administrative routine/courtesy gesture, simple honest permission, informed permission, patient-clinician shared decision-making, and enabling patient’s self decision-making. Different purposes require different processes. Methods We surveyed 488 adults who were planning to undergo or had recently undergone written informed consent-requiring procedures. Perceptions of informed consent purpose (from norm and current practice perspectives) were explored by asking respondents to rank (1 = most reflective) 10 randomly-presented statements: “meaningless routine”, “courtesy gesture” “litigation protection”, “take away compensation rights”, “inform patient’, “make sure patient understand”, “document patient’s decision”, “discover patient’s preferences”, “have shared decision”, and “help patient decide”. Results Respondents’ mean (SD) age was 38.3 (12.5); 50.4% were males, 56.8% had ≥ college education, and 37.3% had undergone a procedure. From the norm perspective, the least reflective statement was “meaningless routine” (ranked 1–3 by 2.6% of respondents) and the most reflective statements were “help patient decide”, “make sure patient understand”, and “inform patient” (ranked 1–3 by 65%, 60%, and 48% of respondents with median [25%,75%] ranking scores of 2 [1,5], 3 [2,4], and 4 [2,5], respectively). Compared to their counterparts, males and pre-procedure respondents ranked “help patient decide” better, whereas females and post-procedure respondents ranked “inform patient” better (p = 0.007 to p < 0.001). Age was associated with better ranking of “help patient decide” and “make sure patient understand” statements (p < 0.001 and p = 0.002, respectively), which were ranked 1–3 by only 46% and 42% of respondents from the current practice perspective (median ranking score 4 [2,6], p < 0.001 vs. norm perspective for both). Conclusions 1) the informed consent process is important to patients, however, patients vary in their views of its purpose with the dominant view being enabling patients’ self decision-making, 2) males, pre-procedure, and older patients more favor a self decision-making purpose, whereas females and post-procedure patients more favor an information disclosure purpose, and 3) more self decision-making and more effective information disclosure than is currently practiced are desired. An informed consent process consistent with Mill’s individual autonomy model may be suitable for most patients. PMID:24406020

Women at risk: Gender inequality and maternal health.

PubMed

Banda, Pamela C; Odimegwu, Clifford O; Ntoimo, Lorretta F C; Muchiri, Evans

2017-04-01

Gender inequality has been documented as a key driver of negative health outcomes, especially among women. However, studies have not clearly examined the role of gender inequality in maternal health in an African setting. Therefore, the authors of this study examined the role of gender inequality, indicated by lack of female autonomy, in exposing women to maternal health risk. Data were obtained from the 2007 Zambia Demographic and Health Survey on a weighted sample of 3,906 married or partnered women aged 15-49 years. Multivariable analyses revealed that low autonomy in household decision power was associated with maternal health risk (Odds Ratio (OR) = 1.52, p < .001). Autonomy interacted with household wealth showed that respondents who were in the wealthier households and had low autonomy in household decision power (OR = 2.03, p < .05) were more likely to be exposed to maternal health risk than their counterparts who had more autonomy. Efforts to lower women's exposure to maternal mortality and morbidity in Zambia should involve interventions to alter prevailing gender norms that limit women's active participation in decisions about their own health during pregnancy and delivery.

Accepting or declining dialysis: considerations taken into account by elderly patients with end-stage renal disease.

PubMed

Visser, Annemieke; Dijkstra, Geke J; Kuiper, Daphne; de Jong, Paul E; Franssen, Casper F M; Gansevoort, Ron T; Izaks, Gerbrand J; Jager, Kitty J; Reijneveld, Sijmen A

2009-01-01

Elderly patients with end-stage renal disease have to make a difficult decision whether or not to start dialysis. This study explores the considerations taken into account by these patients in decision-making regarding renal replacement therapy. In-depth interviews were conducted to gain an enhanced understanding of the considerations in treatment decision-making. Fourteen patients aged 65 years or older participated in the interviews, of whom 8 patients had made the decision to start, and 6 patients the decision to decline, dialysis. All participating patients had a variety of health problems, but appeared to have normal cognitive functions. Patients who declined dialysis were older and more often men and widow(er)s compared with patients who accepted dialysis. Patients chose to start dialysis because they enjoyed life, were not prepared to face the end of life, felt they had no other choice or had care-giving responsibilities for family members. Patients declined dialysis because of the speculated loss of autonomy, their age-associated decrease in vitality, distance from dialysis center and reluctance to think about the future. Results suggest that patients' decisions to decline or accept dialysis are not based on the effectiveness of the treatment, but rather on personal values, beliefs and feelings toward life, suffering and death, and the expected difficulties in fitting the treatment into their life.

Adolescent Self-Reported Physical Activity and Autonomy: A Case for Constrained and Structured Environments?

PubMed

Rachele, Jerome N; Jaakkola, Timo; Washington, Tracy L; Cuddihy, Thomas F; McPhail, Steven M

2015-09-01

The provision of autonomy supportive environments that promote physical activity engagement have become popular in contemporary youth settings. However, questions remain about whether adolescent perceptions of their autonomy have implications for physical activity. The purpose of this investigation was to examine the association between adolescents' self-reported physical activity and their perceived autonomy. Participants (n = 384 adolescents) aged between 12 and 15 years were recruited from six secondary schools in metropolitan Brisbane, Australia. Self-reported measures of physical activity and autonomy were obtained. Logistic regression with inverse probability weights were used to examine the association between autonomy and the odds of meeting youth physical activity guidelines. Autonomy (OR 0.61, 95% CI 0.49-0.76) and gender (OR 0.62, 95% CI 0.46-0.83) were negatively associated with meeting physical activity guidelines. However, the model explained only a small amount of the variation in whether youth in this sample met physical activity guidelines (R(2) = 0.023). For every 1 unit decrease in autonomy (on an index from 1 to 5), participants were 1.64 times more likely to meet physical activity guidelines. The findings, which are at odds with several previous studies, suggest that interventions designed to facilitate youth physical activity should limit opportunities for youth to make independent decisions about their engagement. However, the small amount of variation explained by the predictors in the model is a caveat, and should be considered prior to applying such suggestions in practical settings. Future research should continue to examine a larger age range, longitudinal observational or intervention studies to examine assertions of causality, as well as objective measurement of physical activity. Key pointsAutonomy was negatively associated with meeting physical activity recommendationsThe findings suggest that more structured environments would facilitate physical activityThe small amount of variation explained by the predictors in the model is a caveat.

Privacy, autonomy, and public policy: French and North American perspectives.

PubMed

Merchant, Jennifer

2016-12-01

This article raises the question of whether in both the United States and in France, an individual's autonomy and private decision-making right(s) in matters of health care and access to reproductive technologies can be conciliated with the general interest, and more specifically, the role of the State. Can a full-fledged right to privacy, the ability to exercise one's autonomy, exist alongside the general interest, and depend neither on financial resources like in the United States nor on centralised government decisions or the medical hierarchy like in France? The contrast between these two modern democracies justify the importance of comparing them. I will demonstrate that overlaps do exist: the free exercise of religion and opinion, freedom of expression, the inherent value of each individual. What differs, however, are the institutions and how they provide, protect, promote, or frame access to and expressions of these democratic principles. The impact of the global economy, the exposure of people around the world to each other via the internet, and the mirror effects of social media, blogs, and other such forums, have created new perspectives that countries project onto one another. For example, does France now seem to tout 'autonomy' as a new and important value because it appears to be an 'American success story'? Does the United States now seem to value human rights and a social-democratic approach because of the 'French model'? There seems to be some truth behind these assertions, but as this article will demonstrate, the portrayals of what the 'right to privacy' is in the United States and what 'socialised medicine' is in France are not necessarily fully accurate.

Informed decision making and abortion: crisis pregnancy centers, informed consent, and the first amendment.

PubMed

Ahmed, Aziza

2015-01-01

Shifting laws and regulations increasingly displace the centrality of women's health concerns in the provision of abortion services. This is exemplified by the growing presence of deceptive Crisis Pregnancy Centers alongside new informed consent laws designed to dissuade women from seeking abortions. Litigation on informed consent is further complicated in the clinical context due to the increased mobilization of facts - such as the gestational age or sonogram of the fetus - delivered with the intent to dissuade women from accessing abortion. In other words, factual information utilized for ideological purpose. To preserve a woman's autonomy and decision-making capacity, there must be a concerted effort on the part of legislators and courts to place a woman's health at the center of abortion law and policy. © 2015 American Society of Law, Medicine & Ethics, Inc.