Utilizing role theory to help employed parents cope with children's chronic illness.

PubMed

Major, Debra A

2003-02-01

Role theory is utilized to detail a six-step process for developing balanced coping through role negotiation. As applied in this paper, the role theory framework provides health educators with a useful tool for helping employed parents cope with a child's chronic illness. The emphasis is on partnering with parents or primary caregivers to identify, understand and manage the multiple role demands of working parents with chronically ill children. Role theory suggests ways health educators can support balanced coping by educating families about the demands of a child's illness, and helping to reduce those demands, helping to increase family resources, supporting parents and facilitating role negotiation. The ultimate goal is the development of balanced coping strategies that (1) meet the medical and emotional needs of the ill child, (2) allow parents to maintain their physical and mental health, and (3) enable parents to meet the demands of their other roles (e.g. paid employment).

Multiple Chronic Conditions and Labor Force Outcomes: A Population Study of U.S. Adults

PubMed Central

Ward, Brian W.

2015-01-01

Background Although 1-in-5 adults have multiple (≥2) chronic conditions, limited attention has been given to the association between multiple chronic conditions and employment. Methods Cross-sectional data (2011 National Health Interview Survey) and multivariate regression analyses were used to examine the association among multiple chronic conditions, employment, and labor force outcomes for U.S. adults aged 18–64 years, controlling for covariates. Results Among U.S. adults aged 18–64 years (unweighted n=25,458), having multiple chronic conditions reduced employment probability by 11%–29%. Some individual chronic conditions decreased employment probability. Among employed adults (unweighted n=16,096), having multiple chronic conditions increased the average number of work days missed due to injury/illness in the past year by 3–9 days. Conclusions Multiple chronic conditions are be a barrier to employment and increase the number of work days missed, placing affected individuals at a financial disadvantage. Researchers interested in examining consequences of multiple chronic conditions should give consideration to labor force outcomes. PMID:26103096

Perceived resource support for chronic illnesses among diabetics in north-western China.

PubMed

Zhong, Huiqin; Shao, Ya; Fan, Ling; Zhong, Tangshen; Ren, Lu; Wang, Yan

2016-06-01

A high level of social support can improve long-term diabetes self-management. Support from a single source has been evaluated. This study aims to analyze support from multiple and multilevel sources for diabetic patients by using the Chronic Illness Resources Survey (CIRS). Factors influencing the utilization of the CIRS were also evaluated. A total of 297 patients with diabetes were investigated using the CIRS and Perceived Diabetes Self-management Scale in Shihezi City, China. Descriptive statistics were used to explain demographic variables and scores of the scales. Factors affecting the utilization of chronic illness resources were determined through univariate analysis and then examined by multivariate logistic regression analysis. Of the 297 diabetic patients surveyed, 67% failed to reach the standard (more than 3 points) of utilizing chronic illness resources. Moreover, utilization of chronic illness resources was positively moderately correlated with self-management of diabetes (r = 0.75, P < 0.05). According to the multivariate logistic regression analysis, age (OR, 3.42; 95%CI, 1.19-9.84) and monthly income (OR, 5.27; 95%CI, 1.86-14.90) were significantly positively associated with the CIRS score. Individuals with high school (OR, 2.61; 95%CI, 1.13-6.05) and college (OR, 3.02; 95%CI, 1.13-8.04) degrees obtained higher scores in the survey than those with elementary school education. Results indicated that utilization of resources and support for chronic illness self-management, particularly personal adjustment and organization, were not ideal among diabetics in the communities of north-western China. Improved utilization of chronic illness resources was conducive for proper diabetes self-management. Furthermore, the level of utilization of chronic illness resources increased with age, literacy level, and monthly income.

A literature review on self-care of chronic illness: definition, assessment and related outcomes.

PubMed

Ausili, Davide; Masotto, Matteo; Dall'Ora, Chiara; Salvini, Lorena; Di Mauro, Stefania

2014-01-01

Chronic illnesses care represents a challenging issue for people well-being and future health systems' sustainability. Promotion of self-care is considered a key point for chronically ill patients' care. The aim of this literature was to explore: how self-care of chronic illness has been theoretically defined; how self-care can be assessed in clinical and research settings; what associations exist between self-care and health outcomes of chronically ill patients. A wide range of definitions and terminologies related to self-care of chronic illness has been found in the literature. Although some common elements useful to explain the concept of self-care have been identified, the physical, cognitive, emotional and social processes underlying self-care remain controversial and poorly defined. Valid and reliable disease-specific assessment tools have been developed and used in a growing number of studies; however, the lack of utilization of standardized instruments in clinical practice has been referred by many authors. Significant correlations between self-care of chronic illness and outcome measures e.g. general health status, quality of life and healthcare costs, are reported by a limited number of studies. Supporting patient self-care is recognized as a crucial factor in chronic illness care. A deeper analysis of variables and processes influencing self-care could help for a full description of the phenomenon. A systematic evaluation of self-care in health professionals' everyday clinical practice is strongly recommended. The development of general non-disease-specific assessment tools could facilitate the evaluation of complex patients, especially those with multiple co-morbidities. Although self-care has been recognized as a vital intermediate outcome, further large-scale studies clarifying the association between self-care and patients' and health systems' outcomes are needed.

Illness representations as mediators of the relationship between dispositional optimism and depression in patients with chronic tinnitus: a cross-sectional study.

PubMed

Vollmann, Manja; Scharloo, Margreet; Langguth, Berthold; Kalkouskaya, Natallia; Salewski, Christel

2013-01-01

Both dispositional optimism and illness representations are related to psychological health in chronic patients. In a group of chronic tinnitus sufferers, the interplay between these two variables was examined. Specifically, it was tested to what extent the relationship between dispositional optimism and depression is mediated by more positive illness representations. The study had a cross-sectional design. One hundred and eighteen patients diagnosed with chronic tinnitus completed questionnaires assessing optimism (Life Orientation Test-Revised [LOT-R]), illness representations (Illness Perceptions Questionnaire-Revised [IPQ-R]) and depression (Hospital Anxiety and Depression Scale [HADS]). Correlation analysis showed that optimism was associated with more positive illness representations and lower levels of depression. Simple mediation analyses revealed that the relationship between optimism and depression was partially mediated by the illness representation dimensions consequences, treatment control, coherence, emotional representations and internal causes. A multiple mediation analysis indicated that the total mediation effect of illness representations is particularly due to the dimension consequences. Optimism influences depression in tinnitus patients both directly and indirectly. The indirect effect indicates that optimism is associated with more positive tinnitus-specific illness representations which, in turn, are related to less depression. These findings contribute to a better understanding of the interplay between generalised expectancies, illness-specific perceptions and psychological adjustment to medical conditions.

‘You learn to live with all the things that are wrong with you’: gender and the experience of multiple chronic conditions in later life

PubMed Central

CLARKE, LAURA HURD; BENNETT, ERICA

2014-01-01

This article examines how older adults experience the physical and social realities of having multiple chronic conditions in later life. Drawing on data from in-depth interviews with 16 men and 19 women aged 73+ who had between three and 14 chronic conditions, we address the following research questions: (a) What is it like to have multiple chronic conditions in later life? (b) How do older men and women ‘learn to live’ with the physical and social realities of multiple morbidities? (c) How are older adults’ experiences of illness influenced by age and gender norms? Our participants experienced their physical symptoms and the concomitant limitations to their activities to be a source of personal disruption. However, they normalised their illnesses and made social comparisons in order to achieve a sense of biographical flow in distinctly gendered ways. Forthright in their frustration over their loss of autonomy and physicality but resigned and stoic, the men’s stories reflected masculine norms of control, invulnerability, physical prowess, self-reliance and toughness. The women were dismayed by their bodies’ altered appearances and concerned about how their illnesses might affect their significant others, thereby responding to feminine norms of selflessness, sensitivity to others and nurturance. We discuss the findings in relation to the competing concepts of biographical disruption and biographical flow, as well as successful ageing discourses. PMID:24976658

Older women's experiences with multiple health conditions: daily challenges and care practices.

PubMed

Roberto, Karen A; Gigliotti, Christina M; Husser, Erica K

2005-09-01

Guided by life-course theory and a trajectory model of chronic illness, we examined the health care practices and management strategies used by 17 older women with multiple chronic conditions. Qualitative analyses revealed that the women played an active role in shaping the course of their illness within their everyday lives. Pain and a decline in energy frequently interfered with completion of daily activities. To compensate, many women reduced and slowed down the pace of activities they performed while emphasizing the importance of maintaining independence and autonomy. Appreciative of support from family members, at times the women received more help and advice than they preferred.

Self-management support in chronic illness care: a concept analysis.

PubMed

Kawi, Jennifer

2012-01-01

This article reports on the concept analysis of self-management support (SMS) to provide clarity for systematic implementation in practice. SMS is a concept in its early phase of development. It is increasingly evident in literature on chronic illness care. However, the definition has been simplified or vague leading to variable SMS programs and inconsistent outcomes. Elucidation of SMS is necessary in chronic illness care to facilitate clear understanding and implementation. Rodgers' evolutionary concept analysis method was used to examine SMS. Data sources included systematic multidisciplinary searches of multiple search engines. SMS refers to comprehensive sustaining approaches toward improving chronic illness outcomes consisting of patient-centered attributes (involving patients as partners; providing diverse, innovative educational modalities specific to patients' needs; individualizing patient care), provider attributes (possessing adequate knowledge, skills, attitudes in providing care), and organizational attributes (putting an organized system of care in place, having multidisciplinary team approach, using tangible and social support). A well-clarified SMS concept is important in theory development. The attributes offer necessary components in SMS programs for systematic implementation, evaluation, and research. There is great potential that SMS can help improve outcomes of chronic illness care.

Outcomes that matter in chronic illness: a taxonomy informed by self-determination and adult-learning theory.

PubMed

Zubialde, John P; Mold, James; Eubank, Daniel

2009-09-01

The inability to cure disease or reverse dysfunction results in chronic illness. With it, patients, their families, and society face a unique set of needs and challenges. In the United States, its care consumes 75% of total health care resources. Two thirds of Medicare resources are spent on the 25% of beneficiaries having multiple chronic diseases. Surprisingly, health outcomes of greatest importance to this population remain poorly described and researched. A new taxonomy is presented that uses insights from Self Determination Theory and Adult Learning Theory to expand the scope of recognized health outcomes by including what the authors call "outcomes that matter." Targeting this broader set of outcomes may lead to more effective and meaningful care and open new areas for outcomes research in chronic illness management.

Care Coordination for the Chronically Ill: Understanding the Patient's Perspective

PubMed Central

Maeng, Daniel D; Martsolf, Grant R; Scanlon, Dennis P; Christianson, Jon B

2012-01-01

Objective To identify factors associated with perception of care coordination problems among chronically ill patients. Methods Patient-level data were obtained from a random-digit dial telephone survey of adults with chronic conditions. The survey measured respondents' self-report of care coordination problems and level of patient activation, using the Patient Activation Measure (PAM-13). Logistic regression was used to assess association between respondents' self-report of care coordination problems and a set of patient characteristics. Results Respondents in the highest activation stage had roughly 30–40 percent lower odds of reporting care coordination problems compared to those in the lowest stage (p < .01). Respondents with multiple chronic conditions were significantly more likely to report coordination problems than those with hypertension only. Respondents' race/ethnicity, employment, insurance status, income, and length of illness were not significantly associated with self-reported care coordination problems. Conclusion We conclude that patient activation and complexity of chronic illness are strongly associated with patients' self-report of care coordination problems. Developing targeted strategies to improve care coordination around these patient characteristics may be an effective way to address the issue. PMID:22985032

The Couples' Illness Communication Scale (CICS): development and evaluation of a brief measure assessing illness-related couple communication.

PubMed

Arden-Close, Emily; Moss-Morris, Rona; Dennison, Laura; Bayne, Louise; Gidron, Yori

2010-09-01

When one member of a couple has a chronic illness, communication about the illness is important for both patient and partner well-being. This study aimed to develop and test a brief self-report measure of illness-related couple communication. A combination of correlations and multiple regression were used to assess the internal consistency and validity of the Couples' Illness Communication Scale (CICS). A scale to provide insight into both patient and partner illness communication was developed. The CICS was then tested on patients with ovarian cancer (N=123) and their partners (N=101), as well as patients with early stage multiple sclerosis (MS) who had stable partnerships (N=64). The CICS demonstrated good acceptability, internal consistency, convergent validity (correlations with general couple communication and marital adjustment), construct validity (correlations with intrusive thoughts, social/family well-being, emotional impact of the illness, and psychological distress), and test-retest reliability. The CICS meets the majority of psychometric criteria for assessment measures in both a life-threatening illness (ovarian cancer) and a chronic progressive disease (MS). Further research is required to understand its suitability for use in other populations. Adoption of the CICS into couple-related research will improve understanding of the role of illness-related communication in adjustment to illness. Use of this short, simple tool in a clinical setting can provide a springboard for addressing difficulties with illness-related couple communication and could aid decision making for referrals to couple counselling.

Online self-management interventions for chronically ill patients: cognitive impairment and technology issues.

PubMed

Archer, Norm; Keshavjee, Karim; Demers, Catherine; Lee, Ryan

2014-04-01

As the fraction of the population with chronic diseases continues to grow, methods and/or technologies must be found to help the chronically ill to take more responsibility to self-manage their illnesses. Internet based and/or mobile support for disease self-management interventions have often proved effective, but patients with chronic illnesses may have co-occurring cognitive impairment, making it more difficult for them to cope with technologies. Many older patients are also not familiar with technologies or they may have cognitive disabilities or dementia that reduce their ability to self-manage their healthcare. On-line solutions to the needs of chronically ill patients must be investigated and acted upon with care in an integrated manner, since resources invested in these solutions will be lost if patients do not adopt and continue to use them successfully. To review the capabilities of online and mobile support for self-management of chronic illnesses, and the impacts that age and disease-related issues have on these interventions, including cognitive impairment and lack of access or familiarity with Internet or mobile technologies. This study includes a review of the co-occurrence of cognitive impairment with chronic diseases, and discusses how cognitive impairment, dyadic caregiver patient support, patient efficacy with technology, and smart home technologies can impact the effectiveness and sustainability of online support for disease self-management. Disease self-management interventions (SMIs) using online patient centered support can often enable patients to manage their own chronic illnesses. However, our findings show that cognitive impairment often co-occurs in patients with chronic disease. This, along with age-related increases in multiple chronic illnesses and lack of technology efficacy, can be obstacles to Internet and mobile support for chronic disease self-management. Patients with chronic diseases may have greater than expected difficulties in using Internet and mobile technologies for disease self-management, often due to cognitive impairment or unfamiliarity with technology. Approaches to dealing with such barriers include suitable integration of solutions involving patient-caregiver dyads, better design of online applications, careful attention to technology adoption and sustainability, and smart home technologies. Copyright © 2014 Elsevier Ireland Ltd. All rights reserved.

Work right to right work: An automythology of chronic illness and work.

PubMed

Vijayasingham, Lavanya

2018-03-01

Objectives Chronic illness is known to disrupt and redirect the usual course of work trajectories. This article aims to portray the longitudinal course of negotiating work after multiple sclerosis. Methods Using therapy and personal journals to reconstruct memories and experience, an autoethnography is produced and narrated within Campbell's "Hero's Journey" automythology framework. Results The narrative highlights the intrasubjectivity of illness meaning-the changing internal meaning-making and external behavior and decision-making dynamics. The journey of being inhibited to "Work Right", to "Looking for the Right" and ultimately, finding "Right Work" is charted; portrayed as a bittersweet maneuver to achieve work-illness equilibrium. Discussion This journey traverses a spectrum of negative coping-the exhibition of deviant work behaviors, disengagement and depression; to recalibration and renewal; culminating in living the "new normal", and finding moral and meaningful work engagements. Life trajectories with chronic illness are often skewed and redirected; but longitudinal narratives of normalization and coping also highlight the pursuits to secure and maintain a life of meaning and value.

Dealing with Chronic Illness: Experiences of Iranian Families of Persons with Multiple Sclerosis—A Qualitative Study

PubMed Central

Ebrahimi, Hossein; Hasankhani, Hadi; Namdar, Hossein; Fooladi, Marjaneh

2017-01-01

Background Today family members are providing care and support to each other during illness. In particular, in chronic illness, such as multiple sclerosis, the families are more involved in caring for and supporting their patients, so they use several strategies to cope with this situation. The purpose of this study was to explore the coping strategies in family caregivers of persons with multiple sclerosis in Iran. Methods This is a qualitative study that was conducted through 18 family caregivers of persons with multiple sclerosis. A purposeful sampling method was used. Data were collected through semistructured and in-depth interviews conducted in Multiple Sclerosis Society and hospitals of Tabriz in Iran. The collected data was analyzed according to qualitative content analysis. Results Five main categories were elicited from interviews: “using spirituality,” “living with hope,” “experiencing persistence and stability,” “seeking support,” and “seeking alternative treatments.” Conclusion. The study findings can help to inform the support given to families to help them cope with the effects of caring for someone with multiple sclerosis. Health system managers and professionals by using these results are able to support patients and their families appropriately in order to improve their quality of life and alleviate the complications of disease. PMID:29082042

Double jeopardy: assessing the association between internal displacement, housing quality and chronic illness in a low-income neighborhood.

PubMed

Habib, Rima R; Yassin, Nasser; Ghanawi, Joly; Haddad, Pascale; Mahfoud, Ziyad

2011-04-01

PURPOSE: This study analyzed associations between war-related internal displacement, housing quality and the prevalence of chronic illness in Nabaa, a low-income neighborhood on the outskirts of Beirut, Lebanon. METHODS: A cross-sectional survey of sociodemographics, household characteristics and health conditions of the study population was carried out in 2002. Using a structured questionnaire, the research team surveyed 1,151 households representing 4,987 residents of all ages. The survey was administered to a proxy respondent from each household in face-to-face interviews. A multiple logistic regression model using the generalized estimation equation method was constructed to assess the simultaneous effect of displacement and housing quality on reported ill health, while adjusting for potential confounders. RESULTS: Housing quality and internal displacement were strongly associated with occurrences of chronic illness. The most vulnerable respondents were older residents, females and internally displaced people, who reported high rates of chronic illnesses. Residents with high levels of education were less likely to report a chronic illness than those that had elementary education or less. CONCLUSION: Nabaa residents' experience of poor health was associated with inadequate housing quality. Moreover, residents who have been displaced experience worse living conditions and were more likely to experience poor health than those who were not displaced. These results reveal a need for policies to improve housing quality and alleviate war-related consequences in low-income neighborhoods.

From Jollibee to BeeBee: "lifestyle" and chronic illness in Southeast Asia.

PubMed

Manderson, Lenore; Naemiratch, Bhensri

2010-07-01

Throughout Southeast Asia, the number of people living with chronic conditions and degenerative disease has increased proportionately and absolutely. Public health interventions and effective medical treatment and surgeries have increased life expectancy. Concurrently, social and economic conditions have led to the rapid escalation of lifelong illnesses, characterized as "lifestyle" conditions. Drawing on ethnographic and survey research conducted in Southeast Asia, the authors illustrate the multiple factors contributing to people's health. Changes in food production; the organization, nature, and conditions of work; living conditions; and other factors affecting contemporary living increase vulnerability to noncommunicable diseases. These factors are largely beyond the control of most people. Efforts to reduce chronic illnesses predominantly focus on individual interventions, overlooking the lack of individual capacity to address the structural and institutional factors that compromise people's health.

The impacts of using community health volunteers to coach medication safety behaviors among rural elders with chronic illnesses.

PubMed

Wang, Chi-Jane; Fetzer, Susan J; Yang, Yi-Ching; Wang, Jing-Jy

2013-01-01

It is a challenge for rural health professionals to promote medication safety among older adults taking multiple medications. A volunteer coaching program to promote medication safety among rural elders with chronic illnesses was designed and evaluated. A community-based interventional study randomly assigned 62 rural elders with at least two chronic illnesses to routine care plus volunteer coaching or routine care alone. The volunteer coaching group received a medication safety program, including a coach and reminders by well-trained volunteers, as well as three home visits and five telephone calls over a two-month period. All the subjects received routine medication safety instructions for their chronic illnesses. The program was evaluated using pre- and post-tests of knowledge, attitude and behaviors with regard to medication safety. Results show the volunteer coaching group improved their knowledge of medication safety, but there was no change in attitude after the two-month study period. Moreover, the group demonstrated three improved medication safety behaviors compared to the routine care group. The volunteer coaching program and instructions with pictorial aids can provide a reference for community health professionals who wish to improve the medication safety of chronically ill elders. Copyright © 2013 Mosby, Inc. All rights reserved.

School Experiences of an Adolescent with Medical Complexities Involving Incontinence

ERIC Educational Resources Information Center

Filce, Hollie Gabler; Bishop, John B.

2014-01-01

The educational implications of chronic illnesses which involve incontinence are not well represented in the literature. The experiences of an adolescent with multiple complex illnesses, including incontinence, were explored via an intrinsic case study. Data were gathered from the adolescent, her mother, and teachers through interviews, email…

Can the Fatigue Severity Scale 7-item version be used across different patient populations as a generic fatigue measure - a comparative study using a Rasch model approach

PubMed Central

2014-01-01

Background Fatigue is a disabling symptom associated with reduced quality of life in various populations living with chronic illnesses. The transfer of knowledge about fatigue from one group to another is crucial in both research and healthcare. Outcomes should be validly and reliably comparable between groups and should not be unduly influenced by diagnostic variations. The present study evaluates whether the Fatigue Severity Scale 7-item version (FSS-7) demonstrates similar item hierarchy across people with multiple sclerosis, stroke or HIV/AIDS to ensure valid comparisons between groups, and provide further evidence of internal scale validity. Methods A secondary comparative analysis was performed using data from three different studies of three different chronic illnesses: multiple sclerosis, stroke and HIV/AIDS. Each of these studies had previously concluded that the FSS-7 has better psychometric properties than the original FSS for measuring fatigue interference. Data from 224 people with multiple sclerosis, 104 people with stroke and 316 people with HIV/AIDS were examined. Item response theory and a Rasch model were chosen to analyze the similarity of the FSS-7 item hierarchy across the three diagnostic groups Results Cross-sample differences were found for items #3, #5, #6 and #9 for two of the three samples, which raise questions about item validity across groups. However, disease-specific and disease-generic Rasch measures were similar across samples, indicating that individual fatigue interference measures in these three chronic illnesses might still be reliably comparable using the FSS-7. Conclusions Some items performed differently between the three samples but did not bias person measures, thereby indicating that fatigue interference in these illnesses might still be reliably compared using FSS-7 scores. However, caution is warranted when comparing fatigue raw sum scores directly across diagnostic groups using the FSS-7. Further studies of the scale are needed in other types of chronic illnesses. PMID:24559076

Challenges for co-morbid chronic illness care and policy in Australia: a qualitative study

PubMed Central

Jowsey, Tanisha; Jeon, Yun-Hee; Dugdale, Paul; Glasgow, Nicholas J; Kljakovic, Marjan; Usherwood, Tim

2009-01-01

Background In response to the escalating burden of chronic illness in Australia, recent health policies have emphasised the promotion of patient self-management and better preventive care. A notable omission from these policies is the acknowledgment that patients with chronic illness tend to have co-morbid conditions. Our objectives were: to identify the common challenges co-morbidity poses to patients and carers in their experiences of self-management; to detail the views and perceptions of health professionals about these challenges; and to discuss policy options to improve health care for people with co-morbid chronic illness. The method included semi-structured interviews and focus groups with 129 purposively sampled participants. Participants were people with Type 2 diabetes, chronic obstructive pulmonary disease and/or chronic heart failure as well as carers and health care professionals. Content analysis of the interview data was conducted using NVivo7 software. Results Patients and their carers found co-morbidity influenced their capacity to manage chronic illness in three ways. First, co-morbidity created barriers to patients acting on risk factors; second, it complicated the process of recognising the early symptoms of deterioration of each condition, and third, it complicated their capacity to manage medication. Conclusion Findings highlight challenges that patients with multiple chronic conditions face in relation to preventive care and self-management. Future clinical policy initiatives need to move away from single illness orientation toward strategies that meet the needs of people with co-morbid conditions and strengthen their capacity to self-manage. These patients will benefit directly from specialised education and services that cater to the needs of people with clusters of co-morbidities. PMID:19735576

Defining the neurotoxin derived illness chronic ciguatera using markers of chronic systemic inflammatory disturbances: a case/control study.

PubMed

Shoemaker, Ritchie C; House, Dennis; Ryan, James C

2010-01-01

Ciguatoxins are extremely potent neurotoxins, produced by tropical marine dinoflagellates, that persistently enter into our food web. Over 100,000 people annually experience acute ciguatera poisoning from consuming toxic fish. Roughly 5% of these victims will develop chronic ciguatera (CC), a widespread, multisymptom, multisystem, chronic illness that can last tens of years. CC is marked by disproportionate disability and non-specific refractory symptoms such as fatigue, cognitive deficits and pain, and is suggestive of other illnesses. Its unknown pathophysiology makes both diagnosis and treatment difficult. We wanted to compare objective parameters of visual contrast sensitivity testing, measures of innate immune response and genetic markers in cases to controls to assess the potential for the presence of persistent inflammatory parameters that are demonstrated in other biotoxin associated illnesses at a single specialty clinic. Using 59 CC cases and 59 controls we present in retrospective review, in all cases, abnormalities in immune responses paralleling the chronic systemic inflammatory response syndrome seen in several other chronic diseases. This study defines a preliminary case definition using medical history, total symptoms, visual contrast sensitivity, HLA DR genotype analysis, reduction of regulatory neuropeptides VIP and MSH, and multiple measures of inflammatory immune response, especially C4a and TGFβ1, thereby providing a basis for identification and targeted therapy. CC provides a model for chronic human illness associated with initiation of inflammatory responses by biologically produced neurotoxins. Copyright © 2010 Elsevier Inc. All rights reserved.

Coping mediates the relationship between sense of coherence and mental quality of life in patients with chronic illness: a cross-sectional study.

PubMed

Kristofferzon, Marja-Leena; Engström, Maria; Nilsson, Annika

2018-07-01

The aim of the present study was to investigate relationships between sense of coherence, emotion-focused coping, problem-focused coping, coping efficiency, and mental quality of life (QoL) in patients with chronic illness. A model based on Lazarus' and Folkman's stress and coping theory tested the specific hypothesis: Sense of coherence has a direct and indirect effect on mental QoL mediated by emotion-focused coping, problem-focused coping, and coping efficiency in serial adjusted for age, gender, educational level, comorbidity, and economic status. The study used a cross-sectional and correlational design. Patients (n = 292) with chronic diseases (chronic heart failure, end-stage renal disease, multiple sclerosis, stroke, and Parkinson) completed three questionnaires and provided background data. Data were collected in 2012, and a serial multiple mediator model was tested using PROCESS macro for SPSS. The test of the conceptual model confirmed the hypothesis. There was a significant direct and indirect effect of sense of coherence on mental QoL through the three mediators. The model explained 39% of the variance in mental QoL. Self-perceived effective coping strategies are the most important mediating factors between sense of coherence and QoL in patients with chronic illness, which supports Lazarus' and Folkman's stress and coping theory.

Differential item functioning of the Geriatric Depression Scale in an Asian population.

PubMed

Broekman, B F P; Nyunt, S Z; Niti, M; Jin, A Z; Ko, S M; Kumar, R; Fones, C S L; Ng, T P

2008-06-01

The Geriatric Depression Scale (GDS) is widely used for screening and assessment of major depressive disorder (MDD). Screening scales are often culture-specific and should be evaluated for item response bias (synonymously differential item functioning, DIF) before use in clinical practice and research in a different population. In this study, we examined DIF associated with age, gender, ethnicity and chronic illness in a heterogeneous Asian population in Singapore. The GDS-15 and Structured Clinical Interview for DSM-IV diagnosis of MDD were independently administered by interviewers on 4253 non-institutionalized community living elderly subjects aged 60 years and above who were users of social service agencies. Multiple Indicator Multiple Cause latent variable modelling was used to identify DIF. We found evidence of significant DIF associated with age, gender, ethnicity and chronic illness for 8 items: dropped many activities and interests, afraid something bad is going to happen, prefer staying home to going out, more problems with memory than most, think it is (not) wonderful to be alive, feel pretty worthless, feel (not) full of energy, feel that situation is hopeless. The smaller number of minority Indian and Malay subjects and the self-report of chronic medical illnesses. In a heterogeneous mix of respondents in Singapore, eight items of the GDS-15 showed DIF for age, gender, ethnicity and chronic illness. The awareness and identification of DIF in the GDS-15 provides a rational basis for its use in diverse population groups and guiding the derivation of abbreviated scales.

Patient activation in primary healthcare: a comparison between healthier individuals and those with a chronic illness.

PubMed

Wong, Sabrina T; Peterson, Sandra; Black, Charlyn

2011-05-01

Current policy directions place increasing expectations on patients to actively engage in their care, especially in chronic disease management. We examined relationships between patient activation and multiple dimensions of primary healthcare (PHC), including access, utilization, responsiveness, interpersonal communication, and satisfaction for patients with and without chronic illness. Cross-sectional, random digit dial survey conducted in British Columbia (BC), Canada. Stratified sample of adults (n=504), aged 19 to 90 years, who had visited their regular provider within the past 24 months. All data were weighted to represent residents living in BC. Patient activation and PHC experiences include accessibility, continuity, whole-person care, interpersonal communication, responsiveness, chronic disease management, and satisfaction. The multivariate models provide evidence that both quantity of time and quality of interactions with one's regular provider are associated with higher patient activation. Those with no chronic illness had higher activation scores when they spent more time talking with their regular provider, experienced less hurried communication, or if their test results were explained. The more time people with chronic illness are able to spend with their physician, the more activated they were. Chronic illness respondents also had higher activation scores if they reported higher whole-person care or if they were more satisfied. Positive interactions between the patient and the provider can influence the patient's abilities to engage in and be confident in maintaining/improving his/her health. Supporting patients in becoming actively engaged, in ways that work for them, is essential to providing high quality care, especially among those with a chronic condition.

Chronic illness burden and quality of life in an aging HIV population

PubMed Central

Balderson, Benjamin H.; Grothaus, Lou; Harrison, Robert G.; McCoy, Katryna; Mahoney, Christine; Catz, Sheryl

2012-01-01

The population of persons living with HIV (PLWH) is growing older and more prone to developing other chronic health conditions. Disease progression has been shown to be related to quality of life (QoL). However, descriptions of chronic comorbid illnesses and the unique QoL challenges of older adults living with HIV are not well understood and have not been examined in multiple geographic locations. About 452 PLWH aged 50 years or older were recruited from AIDS Service Organizations in nine states. Participants completed a telephone survey that included measures of other chronic health conditions, perceived stress, depression, and health-related quality of life. As much as 94% of the sample reported a chronic health condition in addition to HIV (mode = 2). The highest reported conditions were hypertension, chronic pain, hepatitis, and arthritis. Despite relatively high rates of depression, overall QoL was moderately high for the sample. Physical functioning was most impacted by the addition of other chronic health problems. Social functioning, mental health functioning, stress, and depression were also strongly associated with chronic disease burden. Additional chronic health problems are the norm for PLWH aged 50 years and older. QoL is significantly related to the addition of chronic health problems. As increasing numbers of PLWH reach older age, this raises challenges for providing comprehensive healthcare to older PLWH with multiple chronic conditions. PMID:22894702

Stigma of visible and invisible chronic conditions.

PubMed

Joachim, G; Acorn, S

2000-07-01

Nurses deliver care to people with various forms of chronic illnesses and conditions. Some chronic conditions, such as paraplegia, are visible while others, such as diabetes, are invisible. Still others, such as multiple sclerosis, are both visible and invisible. Having a chronic illness or condition and being different from the general population subjects a person to possible stigmatization by those who do not have the illness. Coping with stigma involves a variety of strategies including the decision about whether to disclose the condition and suffer further stigma, or attempt to conceal the condition or aspects of the condition and pass for normal. We present a beginning framework that describes the relationship between the elements of stigma and the decision to disclose or hide a chronic condition based on its visibility or invisibility. The specific aims were to combine the results from a meta-study on qualitative research with a review of the quantitative literature, then develop a theoretical framework. Although an understanding of how patients cope with stigmatizing conditions is essential for nurses who aim to deliver comprehensive individualized patient care, there is little current literature on this subject. The relationship between visibility and invisibility and disclosure and non-disclosure remains poorly understood. A framework to facilitate a deeper understanding of the dynamics of chronic illnesses and conditions may prove useful for practice.

Economic hardship associated with managing chronic illness: a qualitative inquiry

PubMed Central

Jeon, Yun-Hee; Essue, Beverley; Jan, Stephen; Wells, Robert; Whitworth, Judith A

2009-01-01

Background Chronic illness and disability can have damaging, even catastrophic, socioeconomic effects on individuals and their households. We examined the experiences of people affected by chronic heart failure, complicated diabetes and chronic obstructive pulmonary disease to inform patient centred policy development. This paper provides a first level, qualitative understanding of the economic impact of chronic illness. Methods Interviews were conducted with patients aged between 45 and 85 years who had one or more of the index conditions and family carers from the Australian Capital Territory and Western Sydney, Australia (n = 66). Content analysis guided the interpretation of data. Results The affordability of medical treatments and care required to manage illness were identified as the key aspects of economic hardship, which compromised patients' capacity to proactively engage in self-management and risk reduction behaviours. Factors exacerbating hardship included ineligibility for government support, co-morbidity, health service flexibility, and health literacy. Participants who were on multiple medications, from culturally and linguistically diverse or Indigenous backgrounds, and/or not in paid employment, experienced economic hardship more harshly and their management of chronic illness was jeopardised as a consequence. Economic hardship was felt among not only those ineligible for government financial supports but also those receiving subsidies that were insufficient to meet the costs of managing long-term illness over and above necessary daily living expenses. Conclusion This research provides insights into the economic stressors associated with managing chronic illness, demonstrating that economic hardship requires households to make difficult decisions between care and basic living expenses. These decisions may cause less than optimal health outcomes and increased costs to the health system. The findings support the necessity of a critical analysis of health, social and welfare policies to identify cross-sectoral strategies to alleviate such hardship and improve the affordability of managing chronic conditions. In a climate of global economic instability, research into the economic impact of chronic illness on individuals' health and well-being and their disease management capacity, such as this study, provides timely evidence to inform policy development. PMID:19818128

Conceptualizing Social Integration among Formerly Homeless Adults with Severe Mental Illness

ERIC Educational Resources Information Center

Tsai, Jack; Rosenheck, Robert A.

2012-01-01

The multiple dimensions of social integration among formerly homeless adults with severe mental illness have not been well-studied. Previous studies have focused on clinical measures or narrow components of social integration. We used a multisite study of chronically homeless adults who were provided housing to (a) identify the main factors…

Measurements of respiratory illness among construction painters.

PubMed

White, M C; Baker, E L

1988-08-01

The prevalence of different measurements of respiratory illness among construction painters was examined and the relation between respiratory illness and employment as a painter assessed in a cross sectional study of current male members of two local affiliates of a large international union of painters. Respiratory illness was measured by questionnaire and spirometry. Longer employment as a painter was associated with increased prevalence of chronic obstructive disease and an interactive effect was observed for smoking and duration of employment as a painter. Multiple regression analysis showed a significant association between years worked as a painter and a decrement in FEV1 equal to about 11 ml for each year worked. This association was larger among painters who had smoked. The prevalence of chronic bronchitis was significantly associated with increased use of spray application methods.

Refractory Depression, Fatigue, Irritable Bowel Syndrome, and Chronic Pain: A Functional Medicine Case Report.

PubMed

Plotnikoff, Gregory; Barber, Melissa

2016-01-01

Single-disorder or single-organ-system clinical practice guidelines are often of limited usefulness in guiding effective management of patients with chronic multidimensional signs and symptoms. The presence of multiple long-standing medical problems in a given patient despite intensive medical effort suggests that addressing systemic core imbalances could complement more narrowly focused approaches. A 72-year-old man experiencing longstanding depression, fatigue, irritable bowel syndrome, and chronic pain in the context of additional refractory illnesses was assessed and treated, guided by a system-oriented approach to underlying core imbalances termed functional medicine. This patient was referred from a team of clinicians representing primary care, cardiology, gastroenterology, hematology, and psychology. Prior treatment had been unsuccessful in managing multiple chronic comorbidities. Diagnostic assessment included comprehensive stool and nutritional/metabolic laboratory testing. The blood-, urine-, or stool-based measurements of relevant markers for multiple systemic issues, including digestion/absorption, inflammation, oxidative stress, and methylation, identified previously unrecognized root causes of his constellation of symptoms. These functional measurements guided rational recommendations for dietary choices and supplementation. The patient experienced steady and significant improvement in his mental health, fatigue, chronic pain, and irritable bowel syndrome-as well as the unexpected resolution of his chronic idiopathic pancytopenia. The success in this case suggests that other patients with chronic, complex, and treatment-refractory illness may benefit from a system-oriented assessment of core imbalances guided by specialized nutritional/metabolic and digestive laboratory testing.

[Effects of a Multi-disciplinary Approached, Empowerment Theory Based Self-management Intervention in Older Adults with Chronic Illness].

PubMed

Park, Chorong; Song, Misoon; Cho, Belong; Lim, Jaeyoung; Song, Wook; Chang, Heekyung; Park, Yeon-Hwan

2015-04-01

The purpose of this study was to develop a multi-disciplinary self-management intervention based on empowerment theory and to evaluate the effectiveness of the intervention for older adults with chronic illness. A randomized controlled trial design was used with 43 Korean older adults with chronic illness (Experimental group=22, Control group=21). The intervention consisted of two phases: (1) 8-week multi-disciplinary, team guided, group-based health education, exercise session, and individual empowerment counseling, (2) 16-week self-help group activities including weekly exercise and group discussion to maintain acquired self-management skills and problem-solving skills. Baseline, 8-week, and 24-week assessments measured health empowerment, exercise self-efficacy, physical activity, and physical function. Health empowerment, physical activity, and physical function in the experimental group increased significantly compared to the control group over time. Exercise self-efficacy significantly increased in experimental group over time but there was no significant difference between the two groups. The self-management program based on empowerment theory improved health empowerment, physical activity, and physical function in older adults. The study finding suggests that a health empowerment strategy may be an effective approach for older adults with multiple chronic illnesses in terms of achieving a sense of control over their chronic illness and actively engaging self-management.

Just regionalisation: rehabilitating care for people with disabilities and chronic illnesses.

PubMed

Secker, Barbara; Goldenberg, Maya J; Gibson, Barbara E; Wagner, Frank; Parke, Bob; Breslin, Jonathan; Thompson, Alison; Lear, Jonathan R; Singer, Peter A

2006-08-29

Regionalised models of health care delivery have important implications for people with disabilities and chronic illnesses yet the ethical issues surrounding disability and regionalisation have not yet been explored. Although there is ethics-related research into disability and chronic illness, studies of regionalisation experiences, and research directed at improving health systems for these patient populations, to our knowledge these streams of research have not been brought together. Using the Canadian province of Ontario as a case study, we address this gap by examining the ethics of regionalisation and the implications for people with disabilities and chronic illnesses. The critical success factors we provide have broad applicability for guiding and/or evaluating new and existing regionalised health care strategies. Ontario is in the process of implementing fourteen Local Health Integration Networks (LHINs). The implementation of the LHINs provides a rare opportunity to address systematically the unmet diverse care needs of people with disabilities and chronic illnesses. The core of this paper provides a series of composite case vignettes illustrating integration opportunities relevant to these populations, namely: (i) rehabilitation and services for people with disabilities; (ii) chronic illness and cancer care; (iii) senior's health; (iv) community support services; (v) children's health; (vi) health promotion; and (vii) mental health and addiction services. For each vignette, we interpret the governing principles developed by the LHINs - equitable access based on patient need, preserving patient choice, responsiveness to local population health needs, shared accountability and patient-centred care - and describe how they apply. We then offer critical success factors to guide the LHINs in upholding these principles in response to the needs of people with disabilities and chronic illnesses. This paper aims to bridge an important gap in the literature by examining the ethics of a new regionalisation strategy with a focus on the implications for people with disabilities and chronic illnesses across multiple sites of care. While Ontario is used as a case study to contextualize our discussion, the issues we identify, the ethical principles we apply, and the critical success factors we provide have broader applicability for guiding and evaluating the development of - or revisions to - a regionalised health care strategy.

Rurality and Ethnicity in Adolescent Physical Illness: Are Children of the Growing Rural Latino Population at Excess Health Risk?

ERIC Educational Resources Information Center

Wickrama, K. A. S.; Elder, Glen H.; Abraham, W. Todd

2007-01-01

Context and Purpose: This study's objectives are to: investigate potential additive and multiplicative influences of rurality and race/ethnicity on chronic physical illness in a nationally representative sample of youth; and examine intra-Latino processes using a Latino sub-sample. Specifically, we examine how rurality and individual psychosocial…

Black-white disparities in the association between posttraumatic stress disorder and chronic illness

PubMed Central

Nobles, Carrie J.; Valentine, Sarah E.; Borba, Christina P.C.; Gerber, Monica W.; Shtasel, Derri L.; Marques, Luana

2016-01-01

Objective Non-Latino blacks experience a higher proportion of chronic illness and associated disabilities than non-Latino whites. Posttraumatic stress disorder (PTSD) is associated with a greater risk of chronic illness, although few studies have investigated whether the interaction of PTSD with racial disparities may lead to a greater risk of chronic illness among blacks with PTSD than among whites with PTSD. Methods We evaluated data from the population-based National Survey of American Life and the National Comorbidity Survey Replication to investigate the association between race, lifetime PTSD and self-reported chronic illness. Weighted linear and Poisson regression models assessed differences in the magnitude of association between PTSD and chronic illness by race on both the additive and multiplicative scales. Results The magnitude of the association between lifetime PTSD and diabetes was greater among blacks (RD 0.07, 95% CI 0.02, 0.11; RR 1.9, 95% CI 1.4, 2.5) than whites (RD 0.004, 95% CI −0.02, 0.03; RR 1.2, 95% CI 0.7, 1.9) on the additive (p=0.017) scale. The magnitude of the association between lifetime PTSD and heart disease was greater among blacks (RD 0.09, 95% CI 0.05, 0.13) than whites (RD 0.04, 95% CI 0.01, 0.07) on the additive scale at a level approaching significance (p=0.051). Conclusion A lifetime history of PTSD was associated with a significantly greater risk of diabetes among blacks as compared to whites. These findings suggest that continuous exposure to racial inequalities may be associated with a greater risk of PTSD-related health sequela. PMID:27212665

Generalized anxiety disorder and medical illness.

PubMed

Culpepper, Larry

2009-01-01

Patients with generalized anxiety disorder (GAD) often have multiple medical comorbidities. The adrenal system and genetic and environmental factors are intermediaries between anxiety and medical illnesses such as chronic pain conditions and gastrointestinal, cardiovascular, endocrine, and respiratory disorders. Medical disorders associated with anxiety include migraine, rheumatoid arthritis, peptic ulcer disease, irritable bowel syndrome, coronary heart disease, hyperthyroidism, diabetes, asthma, and chronic obstructive pulmonary disorder. Compared to people with pain conditions without GAD, individuals with pain conditions and GAD experience and register pain differently; they also have increased awareness of symptoms. Comorbid medical illnesses may influence treatment choice for GAD. Treatment of anxiety in young patients with GAD needs to be long-term to decrease vulnerability to medical conditions. Copyright 2009 Physicians Postgraduate Press, Inc.

Household illness, poverty and physical and emotional child abuse victimisation: findings from South Africa's first prospective cohort study.

PubMed

Meinck, Franziska; Cluver, Lucie D; Boyes, Mark E

2015-05-01

Physical and emotional abuse of children is a large scale problem in South Africa, with severe negative outcomes for survivors. Although chronic household illness has shown to be a predictor for physical and emotional abuse, no research has thus far investigated the different pathways from household chronic illness to child abuse victimisation in South Africa. Confidential self-report questionnaires using internationally utilised measures were completed by children aged 10-17 (n = 3515, 56.7% female) using door-to-door sampling in randomly selected areas in rural and urban locations of South Africa. Follow-up surveys were conducted a year later (96.7% retention rate). Using multiple mediation analyses, this study investigated direct and indirect effects of chronic household illness (AIDS or other illness) on frequent (monthly) physical and emotional abuse victimisation with poverty and extent of the ill person's disability as hypothesised mediators. For children in AIDS-ill families, a positive direct effect on physical abuse was obtained. In addition, positive indirect effects through poverty and disability were established. For boys, a positive direct and indirect effect of AIDS-illness on emotional abuse through poverty were detected. For girls, a positive indirect effect through poverty was observed. For children in households with other chronic illness, a negative indirect effect on physical abuse was obtained. In addition, a negative indirect effect through poverty and positive indirect effect through disability was established. For boys, positive and negative indirect effects through poverty and disability were found respectively. For girls, a negative indirect effect through poverty was observed. These results indicate that children in families affected by AIDS-illness are at higher risk of child abuse victimisation, and this risk is mediated by higher levels of poverty and disability. Children affected by other chronic illness are at lower risk for abuse victimisation unless they are subject to higher levels of household disability. Interventions aiming to reduce poverty and increase family support may help prevent child abuse in families experiencing illness in South Africa.

At-Home Transcranial Direct Current Stimulation (tDCS) With Telehealth Support for Symptom Control in Chronically-Ill Patients With Multiple Symptoms.

PubMed

Riggs, Alexa; Patel, Vaishali; Paneri, Bhaskar; Portenoy, Russell K; Bikson, Marom; Knotkova, Helena

2018-01-01

Transcranial direct current stimulation (tDCS) delivered in multiple sessions can reduce symptom burden, but access of chronically ill patients to tDCS studies is constrained by the burden of office-based tDCS administration. Expanded access to this therapy can be accomplished through the development of interventions that allow at-home tDCS applications. Objective: We describe the development and initial feasibility assessment of a novel intervention for the chronically ill that combines at-home tDCS with telehealth support. Methods: In the developmental phase, the tDCS procedure was adjusted for easy application by patients or their informal caregivers at home, and a tDCS protocol with specific elements for enhanced safety and remote adherence monitoring was created. Lay language instructional materials were written and revised based on expert feedback. The materials were loaded onto a tablet allowing for secure video-conferencing. The telehealth tablet was paired with an at-home tDCS device that allowed for remote dose control via electronic codes dispensed to patients prior to each session. tDCS was delivered in two phases: once daily on 10 consecutive days, followed by an as needed regimen for 20 days. Initial feasibility of this tDCS-telehealth system was evaluated in four patients with advanced chronic illness and multiple symptoms. Change in symptom burden and patient satisfaction were assessed with the Condensed Memorial Symptom Assessment Scale (CMSAS) and a tDCS user survey. Results: The telehealth-tDCS protocol includes one home visit and has seven patient-tailored elements and six elements enhancing safety monitoring. Replicable electrode placement at home without 10-20 EEG measurement is achieved via a headband that holds electrodes in a pre-determined position. There were no difficulties with patients' training, protocol adherence, or tolerability. A total of 60 tDCS sessions were applied. No session required discontinuation, and there were no adverse events. Data collection was feasible and there were no missing data. Satisfaction with the tDCS-telehealth procedure was high and the patients were comfortable using the system. Conclusion: At-home tDCS with telehealth support appears to be a feasible approach for the management of symptom burden in patients with chronic illness. Further studies to evaluate and optimize the protocol effectiveness for symptom-control outcomes are warranted.

At-Home Transcranial Direct Current Stimulation (tDCS) With Telehealth Support for Symptom Control in Chronically-Ill Patients With Multiple Symptoms

PubMed Central

Riggs, Alexa; Patel, Vaishali; Paneri, Bhaskar; Portenoy, Russell K.; Bikson, Marom; Knotkova, Helena

2018-01-01

Transcranial direct current stimulation (tDCS) delivered in multiple sessions can reduce symptom burden, but access of chronically ill patients to tDCS studies is constrained by the burden of office-based tDCS administration. Expanded access to this therapy can be accomplished through the development of interventions that allow at-home tDCS applications. Objective: We describe the development and initial feasibility assessment of a novel intervention for the chronically ill that combines at-home tDCS with telehealth support. Methods: In the developmental phase, the tDCS procedure was adjusted for easy application by patients or their informal caregivers at home, and a tDCS protocol with specific elements for enhanced safety and remote adherence monitoring was created. Lay language instructional materials were written and revised based on expert feedback. The materials were loaded onto a tablet allowing for secure video-conferencing. The telehealth tablet was paired with an at-home tDCS device that allowed for remote dose control via electronic codes dispensed to patients prior to each session. tDCS was delivered in two phases: once daily on 10 consecutive days, followed by an as needed regimen for 20 days. Initial feasibility of this tDCS-telehealth system was evaluated in four patients with advanced chronic illness and multiple symptoms. Change in symptom burden and patient satisfaction were assessed with the Condensed Memorial Symptom Assessment Scale (CMSAS) and a tDCS user survey. Results: The telehealth-tDCS protocol includes one home visit and has seven patient-tailored elements and six elements enhancing safety monitoring. Replicable electrode placement at home without 10–20 EEG measurement is achieved via a headband that holds electrodes in a pre-determined position. There were no difficulties with patients’ training, protocol adherence, or tolerability. A total of 60 tDCS sessions were applied. No session required discontinuation, and there were no adverse events. Data collection was feasible and there were no missing data. Satisfaction with the tDCS-telehealth procedure was high and the patients were comfortable using the system. Conclusion: At-home tDCS with telehealth support appears to be a feasible approach for the management of symptom burden in patients with chronic illness. Further studies to evaluate and optimize the protocol effectiveness for symptom-control outcomes are warranted. PMID:29872381

Perceived conflict in the couple and chronic illness management: preliminary analyses from the Quebec Health Survey.

PubMed

Soubhi, Hassan; Fortin, Martin; Hudon, Catherine

2006-10-19

The quality of the relationship with the spouse/partner appears crucial among patients with multiple chronic conditions where illness management is complex and multifaceted. This study draws on data from the Quebec Health Survey (QHS) to examine, among patients with one or more chronic conditions, the relation between marital status, the perceived conflict with the spouse/partner, and what the patients do to manage their illness as well as how they perceive their health. Data from the QHS 1998 were used. The sample included 7547 coupled adults who had one or more chronic health problems lasting more than 6 months. Independent variables included marital status, perceived conflict with the spouse/partner, and the number of chronic conditions. Illness management was defined broadly as a measure of the patient's efforts at self-care and an illness status indicator, including visits to the generalist and the specialist, the use of telephone health line in the last 12 months, self-rated general health, mental health, and a measure of psychological distress. Linkages between the independent variables and illness management were assessed for males and females separately with logistic regressions, while accounting for the survey sampling design and household clustering. Female patients who did not live with their partner and had never been married were more likely to report a negative perception of their general health and a higher psychological distress than those who were married. Perceived conflict with the partner was linked to a negative perception of mental health and a higher psychological distress among both men and women. Compared to patients with only one chronic condition, males who reported more than one chronic condition were more likely to have consulted a generalist prior to the survey and used the telephone health line, whereas females were more likely to have consulted a specialist. Both males and females with more than one chronic condition were more likely to have a negative perception of their general health and mental health. The study provides a useful preliminary measure of the importance of living arrangements and the quality of the couple relationship in chronic illness management broadly conceived as a measure of the patient's efforts at self-care and an illness status indicator. Results of this study prod us to examine more closely, within longitudinal designs, the influence of living arrangements and the presence of conflict in the couple on chronic illness management as well as the modifying effect of gender on these associations.

The Relationship Between Health Management and Information Behavior Over Time: A Study of the Illness Journeys of People Living With Fibromyalgia.

PubMed

Chen, Annie T

2016-10-25

Over the course of a chronic illness, patients face many challenges, including understanding what is happening to them and developing an effective strategy for managing illness. While there is existing literature concerning how people seek health-related information and cope with chronic illnesses, there is a need for additional research on how information affects patients' understandings of their illness, and how changes in this understanding affect their health management strategies over time. This study examined how health management, information seeking, and information consumption and use processes are related throughout an illness. A diversified recruitment strategy involving multiple media channels was used to recruit participants for an interview study. During the interviews, participants were asked to draw an "illness journey" timeline. The data were analyzed using a qualitative approach drawn from Interpretative Phenomenological Analysis and Grounded Theory. The study identified four main health management features of illness journeys: onset, progression toward diagnosis, acceptance, and development of an effective management strategy. The study then focused on how information seeking changes over illness journeys, particularly in terms of a transition from active information seeking to monitoring with intermittent focused searching. Last, the paper describes the information consumption and use processes that patients engaged in throughout their journey. This study makes three important contributions to the field. First, it presents an integrated conceptualization of how health management and information behaviors are related on illness journeys. Second, it adds to our existing knowledge on health literacy and self-management of chronic illness. Third, the study has implications for health interface design.

Health Self-Efficacy Among Populations with Multiple Chronic Conditions: the Value of Patient-Centered Communication.

PubMed

Finney Rutten, Lila J; Hesse, Bradford W; St Sauver, Jennifer L; Wilson, Patrick; Chawla, Neetu; Hartigan, Danielle B; Moser, Richard P; Taplin, Stephen; Glasgow, Russell; Arora, Neeraj K

2016-08-01

Using cross-sectional survey data, we assessed the association between chronic illness burden and health-related self-efficacy, evaluating whether patient-centered communication is associated with self-efficacy and if that relationship varies by chronic illness burden. Data were from the Health Information National Trends Survey, a cross-sectional survey of the US adult population collected in 2012-2013 (n = 3630). Health-related self-efficacy was measured with the item: "Overall, how confident are you about your ability to take good care of your health?" and the prevalence of six chronic conditions and depression/anxiety was assessed. Patient-centered communication was measured as the frequency with which respondents perceived their healthcare providers allowed them to ask questions, gave attention to their emotions, involved them in decisions, made sure they understood how to take care of their health, helped them to deal with uncertainty, and if they felt they could rely on their healthcare providers to take care of their healthcare needs. Health-related self-efficacy was significantly lower among individuals with greater illness burden. In adjusted analysis, individuals who experienced more positive patient-centered communication reported higher levels of self-efficacy (β = 0.26, P < 0.0001); this association was strongest among those with greater illness burden. Higher levels of self-efficacy were observed among patients reporting more positive patient-centered communication; the observed association was stronger among those with greater chronic illness burden.

Association between component costs, study methodologies, and foodborne illness-related factors with the cost of nontyphoidal Salmonella illness.

PubMed

McLinden, Taylor; Sargeant, Jan M; Thomas, M Kate; Papadopoulos, Andrew; Fazil, Aamir

2014-09-01

Nontyphoidal Salmonella spp. are one of the most common causes of bacterial foodborne illness. Variability in cost inventories and study methodologies limits the possibility of meaningfully interpreting and comparing cost-of-illness (COI) estimates, reducing their usefulness. However, little is known about the relative effect these factors have on a cost-of-illness estimate. This is important for comparing existing estimates and when designing new cost-of-illness studies. Cost-of-illness estimates, identified through a scoping review, were used to investigate the association between descriptive, component cost, methodological, and foodborne illness-related factors such as chronic sequelae and under-reporting with the cost of nontyphoidal Salmonella spp. illness. The standardized cost of nontyphoidal Salmonella spp. illness from 30 estimates reported in 29 studies ranged from $0.01568 to $41.22 United States dollars (USD)/person/year (2012). The mean cost of nontyphoidal Salmonella spp. illness was $10.37 USD/person/year (2012). The following factors were found to be significant in multiple linear regression (p≤0.05): the number of direct component cost categories included in an estimate (0-4, particularly long-term care costs) and chronic sequelae costs (inclusion/exclusion), which had positive associations with the cost of nontyphoidal Salmonella spp. illness. Factors related to study methodology were not significant. Our findings indicated that study methodology may not be as influential as other factors, such as the number of direct component cost categories included in an estimate and costs incurred due to chronic sequelae. Therefore, these may be the most important factors to consider when designing, interpreting, and comparing cost of foodborne illness studies.

Human leukocyte antigens in Gulf War veterans with chronic unexplained multiple symptoms.

PubMed

O'Bryan, Thomas A; Romano, Paula J; Zangwill, Bruce C

2003-12-01

Several articles have suggested that immune dysregulation related to Gulf War deployment may be involved in chronic illnesses with an unclear etiology among Gulf War veterans. To determine whether genetic susceptibility related to the human leukocyte antigen (HLA) system might play a role in development of the veterans' illnesses, we examined the frequency distribution of HLA A, B, DR, and DQ antigens from symptomatic veterans residing in south-central Pennsylvania compared with a local healthy population database. Only HLA-A28 demonstrated statistical significance. A28 was present in 7 (21.9%) of 32 of the veterans and 15 (6.9%) of 217 of the healthy population (p = 0.01, Fisher's exact test). This accounts for a minority of the ill veterans tested and is not statistically significant when corrected for the number of antigens determined. We conclude that specific HLA antigens are not strongly associated with the illnesses of Gulf War veterans.

Disparities in Confidence to Manage Chronic Diseases in Men.

PubMed

Elder, Keith; Gilbert, Keon; Hanke, Louise Meret; Dean, Caress; Rice, Shahida; Johns, Marquisha; Piper, Crystal; Wiltshire, Jacqueline; Moore, Tondra; Wang, Jing

2014-01-01

Chronic diseases are highly prevalent among men in the United States and chronic disease management is problematic for men, particularly for racial and ethnic minority men. This study examined the association between health information seeking and confidence to manage chronic diseases among men. Study data were drawn from the 2007 Health Tracking Household Survey and analyzed using multiple binary logistic regressions. The analytical sample included 2,653 men, 18 years and older with a chronic illness. Results: Health information seeking was not associated with confidence to manage chronic illnesses. African-American men had lower odds than White men to agree to take actions to prevent symptoms with their health. Hispanic men had lower odds than White men to agree to tell a doctor concerns they have, even when not asked. Racial and ethnic minority men with a chronic condition appear to be less confident to manage their health compared to white men. Chronic disease management needs greater exploration to understand the best ways to help racial and ethnic minority men successfully manage their chronic condition.

[Living with a chronic progressive form of multiple sclerosis--a balance act].

PubMed

Hellige, Barbara

2002-12-01

There are only a few studies in the German speaking countries available which address the subject of the experience of chronically ill people during the course of their illness. Therefore it was the intent of this present study to find answers for central nurse science issues: How do people who suffer from a chronically progressive course of multiple sclerosis experience the downward trajectory? Which strategies do they develop in order to integrate the disease into their lives? In what ways does the scientific paradigm of medicine influence the perceptions of the illness and the life with it? After an analysis of the national and international state of nursing research follows a description of the methodology of the Grounded Theory and the individual examination steps of the study. The second part examines some essentials of the study. The results show that the trajectory is characterized by four phases. At first the ill person concentrates on the social discussion of the pathogenesis and the medical paradigma. But with physical experiences, exchange with other affected people and acquired information, those concerned develop a very case-specific knowledge. Often disillusioned by the medication strategies, based on the experience that their subjectivity and their individuality are not taken into account, they increasingly disapprove the deficit-oriented perspective of the professionals. They develop distinctly self-caring potentialities. To identify and support this self-care potentialities should be the very core of nursing.

Multiple Sclerosis and Employment: A Research Review Based on the International Classification of Function

ERIC Educational Resources Information Center

Frain, Michael P.; Bishop, Malachy; Rumrill, Phillip D., Jr.; Chan, Fong; Tansey, Timothy N.; Strauser, David; Chiu, Chung-Yi

2015-01-01

Multiple sclerosis (MS) is an unpredictable, sometimes progressive chronic illness affecting people in the prime of their working lives. This article reviews the effects of MS on employment based on the World Health Organization's International Classification of Functioning, Disability and Health model. Correlations between employment and…

Can the Cancer-related Fatigue Case-definition Criteria Be Applied to Chronic Medical Illness? A Comparison between Breast Cancer and Systemic Sclerosis.

PubMed

Kwakkenbos, Linda; Minton, Ollie; Stone, Patrick C; Alexander, Susanna; Baron, Murray; Hudson, Marie; Thombs, Brett D

2015-07-01

Fatigue is a crucial determinant of quality of life across rheumatic diseases, but the lack of agreed-upon standards for identifying clinically significant fatigue hinders research and clinical management. Case definition criteria for cancer-related fatigue were proposed for inclusion in the International Classification of Diseases. The objective was to evaluate whether the cancer-related fatigue case definition performed equivalently in women with breast cancer and systemic sclerosis (SSc) and could be used to identify patients with chronic illness-related fatigue. The cancer-related fatigue interview (case definition criteria met if ≥ 5 of 9 fatigue-related symptoms present with functional impairment) was completed by 291 women with SSc and 278 women successfully treated for breast cancer. Differential item functioning was assessed with the multiple indicator multiple cause model. Items 3 (concentration) and 10 (short-term memory) were endorsed significantly less often by women with SSc compared with cancer, controlling for responses on other items. Omitting these 2 items from the case definition and requiring 4 out of the 7 remaining symptoms resulted in a similar overall prevalence of cancer-related fatigue in the cancer sample compared with the original criteria (37.4% vs 37.8%, respectively), with 97.5% of patients diagnosed identically with both definitions. Prevalence of chronic illness-related fatigue was 36.1% in SSc using 4 of 7 symptoms. The cancer-related fatigue criteria can be used equivalently to identify patients with chronic illness-related fatigue when 2 cognitive fatigue symptoms are omitted. Harmonized definitions and measurement of clinically significant fatigue will advance research and clinical management of fatigue in rheumatic diseases and other conditions.

Mobile health devices: will patients actually use them?

PubMed

Shaw, Ryan J; Steinberg, Dori M; Bonnet, Jonathan; Modarai, Farhad; George, Aaron; Cunningham, Traven; Mason, Markedia; Shahsahebi, Mohammad; Grambow, Steven C; Bennett, Gary G; Bosworth, Hayden B

2016-05-01

Although mobile health (mHealth) devices offer a unique opportunity to capture patient health data remotely, it is unclear whether patients will consistently use multiple devices simultaneously and/or if chronic disease affects adherence. Three healthy and three chronically ill participants were recruited to provide data on 11 health indicators via four devices and a diet app. The healthy participants averaged overall weekly use of 76%, compared to 16% for those with chronic illnesses. Device adherence declined across all participants during the study. Patients with chronic illnesses, with arguably the most to benefit from advanced (or increased) monitoring, may be less likely to adopt and use these devices compared to healthy individuals. Results suggest device fatigue may be a significant problem. Use of mobile technologies may have the potential to transform care delivery across populations and within individuals over time. However, devices may need to be tailored to meet the specific patient needs. © The Author 2016. Published by Oxford University Press on behalf of the American Medical Informatics Association. All rights reserved. For Permissions, please email: journals.permissions@oup.com.

[Social and organizational innovation to tackle the challenge of integrated care of the chronically ill].

PubMed

Nuño-Solinís, Roberto

2014-01-01

The increase in life expectancy, coupled with other factors, has led to an increase in the prevalence of chronic diseases and multiple morbidity. This has led to the need to develop new health and social care models, which will allow managing these efficiently and in a sustainable manner. In particular, there seems to be consensus on the need to move towards integrated, patient-centered, and more proactive care. Thus, in recent years, chronic care models have been developed at international, national and regional level, as well as introducing strategies to tackle the challenge of chronic illness. However, the implementation of actions facilitating the change towards this new model of care does not seem to be an easy task. This paper presents some of the strategic lines and initiatives carried out by the Department of Health of the Basque Government. These actions can be described within a social and organizational innovation framework, as a means for effective implementation of interventions and strategies that shape the model required for the improved care of chronic illnesses within a universal and tax-funded health system. Copyright © 2013 Elsevier España, S.L. All rights reserved.

Kindling and Oxidative Stress as Contributors to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

PubMed Central

Jason, L. A.; Porter, N.; Herrington, J.; Sorenson, M.; Kubow, S.

2010-01-01

Myalgic Encephalomyelitis/chronic fatigue syndrome (ME/CFS) is one of the more complex illnesses involving multiple systems within the body. Onset of ME/CFS frequently occurs quickly, and many patients report a prior exposure to a viral infection. This debilitating illness can affect the immune, neuroendocrine, autonomic, and neurologic systems. Abnormal biological findings among some patients have included aberrant ion transport and ion channel activity, cortisol deficiency, sympathetic nervous system hyperactivity, EEG spike waves, left ventricular dysfunction in the heart, low natural killer cell cytotoxicity, and a shift from Th1 to Th2 cytokines. We propose that the kindling and oxidative stress theories provide a heuristic template for better understanding the at times conflicting findings regarding the etiology and pathophysiology of this illness. PMID:21253446

Course of illness after the onset of chronic rejection in lung transplant recipients.

PubMed

Song, Mi-Kyung; De Vito Dabbs, Annette; Studer, Sean M; Zangle, Sarah E

2008-05-01

Despite the overall negative impact of chronic rejection on quality of life and survival after lung transplant, the specific clinical indicators of deterioration have not been identified. To describe the course of illness after the onset of chronic rejection, including demographic and transplant variables, morbidity, mortality, health resource utilization, and end-of-life care, and to identify clinical indicators of deterioration in health and limited survival after the onset of chronic rejection. The medical records of 311 recipients of lung transplants between 1998 and 2004 were reviewed retrospectively to identify 60 recipients who experienced chronic rejection. Median survival after chronic rejection was 31.34 months. Time to rejection (mean, 26.05 months; SD, 16.85) was significantly correlated with overall survival without need of a retransplant (r = 0.64; P < .001). The earlier the onset of chronic rejection or the need for oxygen at home, the shorter was the period of survival after chronic rejection and the more frequent were hospital and intensive care unit admissions and prolonged stays. Of the 26 recipients who died, 65% died at the transplant center, and all but 1 died in the intensive care unit; 3 died after multiple attempts of cardiopulmonary resuscitation; life support was ultimately withdrawn in 69%. Lung transplant recipients who experience chronic graft rejection have high rates of morbidity, mortality, and health resource utilization; however, the course of illness after chronic rejection is highly variable.

[Prevention and management of refeeding syndrome in patients with chronic critical illness].

PubMed

Chen, Jun; Fan, Chaogang

2016-07-01

Nutritional support is an important means to treat the patients with chronic critical illness for commonly associated malnutrition. Refeeding syndrome is a serious complication during the process, mainly manifested as severe electrolyte with hypophosphataemia being the most common. Refeeding syndrome is not uncommon but it is often ignored. In our future clinical work, we need to recognize this chinical situation and use preventative and treatment measures. According to NICE clinical nutrition guideline, we discussed the risk factors, treatment methods and preventive measures of refeeding syndrome in patients with chronic critical illness. We argued that for patients with high risk refeeding syndrome, nutritional support treatment should be initially low calorie and slowly increased to complete requirement. Circulation capacity should be recovered, fluid balance must be closely monitored and supplement of vitamins, microelement, electrolytes should be noted. After the emergence of refeeding syndrome, we should reduce or even stop the calorie intake, give an active treatment for electrolyte disorder, provide vitamin B, and maintain the functions of multiple organs.

Pain management in the nursing home.

PubMed

Dumas, Linda G; Ramadurai, Murali

2009-06-01

This article is about pain management and some of the best practices to address the problem of pain in nursing home patients who have a serious illness and multiple comorbid conditions. Management of the emotional distress that accompanies chronic or acute pain is of foremost concern. In this article, the topics discussed include general pain management in a nursing home for a long-term care resident who has chronic pain, the relief of symptoms and suffering in a patient who is on palliative care and hospice, and the pain management of a postoperative patient with acute pain for a short transitional period (post-acute illness or surgery).

Sepsis Pathophysiology, Chronic Critical Illness, and Persistent Inflammation-Immunosuppression and Catabolism Syndrome.

PubMed

Mira, Juan C; Gentile, Lori F; Mathias, Brittany J; Efron, Philip A; Brakenridge, Scott C; Mohr, Alicia M; Moore, Frederick A; Moldawer, Lyle L

2017-02-01

To provide an appraisal of the evolving paradigms in the pathophysiology of sepsis and propose the evolution of a new phenotype of critically ill patients, its potential underlying mechanism, and its implications for the future of sepsis management and research. Literature search using PubMed, MEDLINE, EMBASE, and Google Scholar. Sepsis remains one of the most debilitating and expensive illnesses, and its prevalence is not declining. What is changing is our definition(s), its clinical course, and how we manage the septic patient. Once thought to be predominantly a syndrome of over exuberant inflammation, sepsis is now recognized as a syndrome of aberrant host protective immunity. Earlier recognition and compliance with treatment bundles has fortunately led to a decline in multiple organ failure and in-hospital mortality. Unfortunately, more and more sepsis patients, especially the aged, are suffering chronic critical illness, rarely fully recover, and often experience an indolent death. Patients with chronic critical illness often exhibit "a persistent inflammation-immunosuppression and catabolism syndrome," and it is proposed here that this state of persisting inflammation, immunosuppression and catabolism contributes to many of these adverse clinical outcomes. The underlying cause of inflammation-immunosuppression and catabolism syndrome is currently unknown, but there is increasing evidence that altered myelopoiesis, reduced effector T-cell function, and expansion of immature myeloid-derived suppressor cells are all contributory. Although newer therapeutic interventions are targeting the inflammatory, the immunosuppressive, and the protein catabolic responses individually, successful treatment of the septic patient with chronic critical illness and persistent inflammation-immunosuppression and catabolism syndrome may require a more complementary approach.

The Chronically Ill Child in the School.

ERIC Educational Resources Information Center

Sexson, Sandra; Madan-Swain, Avi

1995-01-01

Examines the effects of chronic illness on the school-age population. Facilitating successful functioning of chronically ill youths is a growing problem. Focuses on problems encountered by the chronically ill student who has either been diagnosed with a chronic illness or who has survived such an illness. Discusses the role of the school…

Family Members Providing Home-Based Palliative Care to Older Adults: The Enactment of Multiple Roles

ERIC Educational Resources Information Center

Clemmer, Sarah J.; Ward-Griffin, Catherine; Forbes, Dorothy

2008-01-01

Canadians are experiencing increased life expectancy and chronic illness requiring end-of-life care. There is limited research on the multiple roles for family members providing home-based palliative care. Based on a larger ethnographic study of client-family-provider relationships in home-based palliative care, this qualitative secondary analysis…

Lost productivity and burden of illness in cancer survivors with and without other chronic conditions.

PubMed

Dowling, Emily C; Chawla, Neetu; Forsythe, Laura P; de Moor, Janet; McNeel, Timothy; Rozjabek, Heather M; Ekwueme, Donatus U; Yabroff, K Robin

2013-09-15

Cancer survivors may experience long-term and late effects from treatment that adversely affect health and limit functioning. Few studies examine lost productivity and disease burden in cancer survivors compared with individuals who have other chronic conditions or by cancer type. We identified 4960 cancer survivors and 64,431 other individuals from the 2008-2010 Medical Expenditure Panel Survey and compared multiple measures of disease burden, including health status and lost productivity, between conditions and by cancer site for cancer survivors. All analyses controlled for the effects of age, sex, race/ethnicity, and number of comorbid conditions. Overall, in adjusted analyses in multiple models, cancer survivors with another chronic disease (heart disease or diabetes) experienced higher levels of burden compared with individuals with a history of cancer only, chronic disease only, and neither cancer, heart disease, nor diabetes across multiple measures (P < .05). Among cancer survivors, individuals with short survival cancers and multiple cancers consistently had the highest levels of burden across multiple measures (P < .0001). Cancer survivors who have another chronic disease experience more limitations and higher levels of burden across multiple measures. Limitations are particularly severe in cancer survivors with short survival cancer and multiple cancers. © 2013 American Cancer Society.

Lost Productivity and Burden of Illness in Cancer Survivors With and Without Other Chronic Conditions

PubMed Central

Dowling, Emily C.; Chawla, Neetu; Forsythe, Laura P.; de Moor, Janet; McNeel, Timothy; Rozjabek, Heather M.; Ekwueme, Donatus U.; Yabroff, K. Robin

2018-01-01

BACKGROUND Cancer survivors may experience long-term and late effects from treatment that adversely affect health and limit functioning. Few studies examine lost productivity and disease burden in cancer survivors compared with individuals who have other chronic conditions or by cancer type. METHODS We identified 4960 cancer survivors and 64,431 other individuals from the 2008–2010 Medical Expenditure Panel Survey and compared multiple measures of disease burden, including health status and lost productivity, between conditions and by cancer site for cancer survivors. All analyses controlled for the effects of age, sex, race/ethnicity, and number of comorbid conditions. RESULTS Overall, in adjusted analyses in multiple models, cancer survivors with another chronic disease (heart disease or diabetes) experienced higher levels of burden compared with individuals with a history of cancer only, chronic disease only, and neither cancer, heart disease, nor diabetes across multiple measures (P <.05). Among cancer survivors, individuals with short survival cancers and multiple cancers consistently had the highest levels of burden across multiple measures (P <.0001). CONCLUSIONS Cancer survivors who have another chronic disease experience more limitations and higher levels of burden across multiple measures. Limitations are particularly severe in cancer survivors with short survival cancer and multiple cancers. PMID:23794146

The Role of Hope for Adolescents with a Chronic Illness: An Integrative Review.

PubMed

Griggs, Stephanie; Walker, Rachel K

2016-01-01

Hope is a human strength essential for adolescents' enduring and coping with chronic illness however, the role of hope is not well understood in this population. This integrative review describes what is currently known about the role of hope in adolescents with a chronic illness. A methodological review using an integrative approach by R. Whittemore and K. Knafl (2005) was performed. MEDLINE via Pubmed; CINAHL; PyscINFO and Google scholar were searched for articles published in peer-reviewed journals from 1995 to 2015, using search terms 'hope and chronic illness' with age limiters for all except Google scholar (title search of "hope and adolescents"). Of the 197 studies initially retrieved: a total of 27 quantitative studies, 8 qualitative studies and 19 theoretical works were selected for review. Seven themes emerged including that hope: (i) promotes health (ii) facilitates coping and adjustment, (iii) enhances quality of life, (iv) is essential in purpose in life and illness (v) improves self-esteem, (vi) is an important factor in resilience and (vii) affects maturation. Persons reporting higher levels of hope find multiple routes to goals, view setbacks as challenges, and better manage psychological symptoms. Although theory and a limited body of empirical research to date suggest a link between hopeful thinking and physical health, the specific mechanisms remain unclear. As hope is linked to resilience, further research should explore whether adolescents with higher hope return to baseline faster than their lower hope counterparts. Copyright © 2016 Elsevier Inc. All rights reserved.

Patients with heart failure and their partners with chronic illness: interdependence in multiple dimensions of time.

PubMed

Nimmon, Laura; Bates, Joanna; Kimel, Gil; Lingard, Lorelei

2018-01-01

Informal caregivers play a vital role in supporting patients with heart failure (HF). However, when both the HF patient and their long-term partner suffer from chronic illness, they may equally suffer from diminished quality of life and poor health outcomes. With the focus on this specific couple group as a dimension of the HF health care team, we explored this neglected component of supportive care. From a large-scale Canadian multisite study, we analyzed the interview data of 13 HF patient-partner couples (26 participants). The sample consisted of patients with advanced HF and their long-term, live-in partners who also suffer from chronic illness. The analysis highlighted the profound enmeshment of the couples. The couples' interdependence was exemplified in the ways they synchronized their experience in shared dimensions of time and adapted their day-to-day routines to accommodate each other's changing health status. Particularly significant was when both individuals were too ill to perform caregiving tasks, which resulted in the couples being in a highly fragile state. We conclude that the salience of this couple group's oscillating health needs and their severe vulnerabilities need to be appreciated when designing and delivering HF team-based care.

The Role of Protein Radicals in Chronic Neuroimmune Dysfunction and Neuropathology in Response to a Multiple-Hit Model of Gulf War Exposure

DTIC Science & Technology

2014-10-01

potential neurotoxicants and triggers of inflammation, such as persistent peripheral inflammation and the organophosphate pesticide chlorpyrifos (CPF...War Illness Mouse Model, Chlorpyrifos , LPS, NF-KB p50, microglia, chronic neuroinflammation, serum markers, neuropathology 16. SECURITY...neurotoxicants and triggers of inflammation, such as persistent infections, and the organophosphate pesticide chlorpyrifos (CPF) may interact to

The relation of illness perceptions to stress, depression, and fatigue in patients with chronic lymphocytic leukaemia.

PubMed

Westbrook, Travis D; Maddocks, Kami; Andersen, Barbara L

2016-07-01

Chronic lymphocytic leukaemia (CLL) is the most prevalent adult leukaemia and is incurable. The course and treatment of CLL is unique and characterised by repeated cycles of treatment, stable disease and relapse. Utilising a Self-Regulatory Model framework, we examined the relationship between patients' illness perceptions and cancer-specific stress, depressive symptoms and fatigue. Our aim was to test illness perceptions as predictors of these outcomes when variance due to disease and treatment variables was controlled. Data were collected on 147 patients with relapsed/refractory CLL as they entered a phase II clinical trial of an investigational medication at a university affiliated, National Cancer Institute designated comprehensive cancer center. Cancer-specific stress, depressive symptoms and fatigue interference. . Hierarchical multiple regression was used. Consequences and emotional representation were related to all outcomes (ps < .01). Illness concern was related to cancer-specific stress (p < .01), and identity was related to fatigue interference (p < .01). All relationships were observed while controlling for number of previous CLL therapies received. Illness perceptions are related to cancer-specific stress, depressive symptoms and fatigue interference in relapsed/refractory CLL. Interventions targeted at restructuring maladaptive illness perceptions may have clinical benefit in this population.

Predictors of burden among lower socioeconomic status caregivers of persons with chronic mental illness.

PubMed

Biegel, D E; Milligan, S E; Putnam, P L; Song, L Y

1994-10-01

This study uses a stress-coping-support framework to examine the predictors of caregiver burden with a sample of 103 lower social class family caregivers of persons with chronic mental illness. Results of multiple regression analyses show that the greater the frequency of client behavioral symptoms and the lower the amount of perceived support from family members, the higher the level of overall caregiver burden. Examination of the predictors of specific types of burden-family disruption, stigma, strain, and dependency-reveal that different constellations of variables predict different types of burden. The need for mental health agencies to address caregiver and client concerns is addressed. Implications are presented for practice and future research.

A narrative literature review regarding job retention strategies for people with chronic illnesses.

PubMed

Koch, Lynn C; Rumrill, Phillip D; Conyers, Liza; Wohlford, Sarah

2013-01-01

Job retention is a major concern for individuals with chronic illnesses, who represent a rapidly growing vocational rehabilitation (VR) consumer population. The purpose of this article is to examine selected job retention considerations for consumers with chronic illnesses. The authors (a) describe distinguishing characteristics of chronic illnesses in terms of populations affected and psychosocial implications, (b) discuss the vocational implications of chronic illnesses, (c) provide general considerations for the provision of job retention services, and (d) examine job retention strategies aimed at improving employment outcomes for individuals with chronic illnesses.

Siblings of children with a chronic illness: a meta-analysis.

PubMed

Sharpe, Donald; Rossiter, Lucille

2002-12-01

To review the literature pertaining to the siblings of children with a chronic illness. Fifty-one published studies and 103 effect sizes were identified and examined through meta-analysis. We found (1) a modest, negative effect size statistic existed for siblings of children with a chronic illness relative to comparison participants or normative data; (2) heterogeneity existed for those effect sizes; (3) parent reports were more negative than child self-reports; (4) psychological functioning (i.e., depression, anxiety), peer activities, and cognitive development scores were lower for siblings of children with a chronic illness compared to controls; and (5) a cluster of chronic illnesses with daily treatment regimes was associated with negative effect statistics compared to chronic illnesses that did not affect daily functioning. More methodologically sound studies investigating the psychological functioning of siblings of children with a chronic illness are needed. Clinicians need to know that siblings of children with a chronic illness are at risk for negative psychological effects. Intervention programs for the siblings and families of children with a chronic illness should be developed.

Illness uncertainty and illness intrusiveness as predictors of depressive and anxious symptomology in college students with chronic illnesses.

PubMed

Mullins, Alexandria J; Gamwell, Kaitlyn L; Sharkey, Christina M; Bakula, Dana M; Tackett, Alayna P; Suorsa, Kristina I; Chaney, John M; Mullins, Larry L

2017-07-01

To examine predictors of psychological functioning in college students with chronic illnesses. Participants (N = 1413) included 364 students with self-reported diagnoses of asthma or allergies, 148 students with other chronic illnesses (eg, epilepsy, type 1 diabetes), and 901 healthy students. Data were collected between November 2013 and May 2015. Participants completed online measures of psychosocial functioning, including illness uncertainty, illness intrusiveness, depression, and anxiety. Students with chronic illnesses other than asthma or allergies evidenced the greatest levels of anxious (p <. 05), but not depressive symptomology. Additionally, this group reported greater illness uncertainty and intrusiveness (p <. 05) compared to their peers. Uncertainty and intrusiveness independently predicted depressive and anxious symptoms for students in both illness groups. Compared to peers with asthma or allergies, college students with other chronic illnesses reported higher levels of anxious symptoms. Illness uncertainty and intrusiveness appear to be predictors of psychological distress, regardless of illness.

Patients with heart failure and their partners with chronic illness: interdependence in multiple dimensions of time

PubMed Central

Nimmon, Laura; Bates, Joanna; Kimel, Gil; Lingard, Lorelei

2018-01-01

Background Informal caregivers play a vital role in supporting patients with heart failure (HF). However, when both the HF patient and their long-term partner suffer from chronic illness, they may equally suffer from diminished quality of life and poor health outcomes. With the focus on this specific couple group as a dimension of the HF health care team, we explored this neglected component of supportive care. Materials and methods From a large-scale Canadian multisite study, we analyzed the interview data of 13 HF patient–partner couples (26 participants). The sample consisted of patients with advanced HF and their long-term, live-in partners who also suffer from chronic illness. Results The analysis highlighted the profound enmeshment of the couples. The couples’ interdependence was exemplified in the ways they synchronized their experience in shared dimensions of time and adapted their day-to-day routines to accommodate each other’s changing health status. Particularly significant was when both individuals were too ill to perform caregiving tasks, which resulted in the couples being in a highly fragile state. Conclusion We conclude that the salience of this couple group’s oscillating health needs and their severe vulnerabilities need to be appreciated when designing and delivering HF team-based care. PMID:29588596

Biopsychosocial Predictors of Fall Events among Older African Americans

PubMed Central

Nicklett, Emily Joy; Taylor, Robert Joseph; Rostant, Ola; Johnson, Kimson E.; Evans, Linnea

2016-01-01

This study identifies risk and protective factors for falls among older, community-dwelling African Americans. Drawing upon the biopsychosocial perspective (Engel, 1997), we conducted a series of sex- and age-adjusted multinomial logistic regression analyses to identify the correlates of fall events among older African Americans. Our sample consisted of 1,442 community-dwelling African Americans aged 65 and older, participating in the 2010-12 rounds of the Health and Retirement Study. Biophysical characteristics associated with greater relative risk of experiencing single and/or multiple falls included greater functional limitations, poorer self-rated health, poorer self-rated vision, chronic illnesses (high blood pressure, diabetes, cancer, lung disease, heart problems, stroke, and arthritis), greater chronic illness comorbidity, older age, and female sex. Physical activity was negatively associated with recurrent falls. Among the examined psychosocial characteristics, greater depressive symptoms were associated with greater relative risk of experiencing single and multiple fall events. Implications for clinicians and future studies are discussed. PMID:28285579

“I see it now”: Using photo elicitation to understand chronic illness self-management

PubMed Central

Fritz, Heather; Lysack, Cathy

2018-01-01

Background How people integrate self-management into daily life remains underexamined, and such processes are difficult to elicit through traditional approaches used to understand human occupation. Purpose This paper will provide a brief overview of one visual research method, photo elicitation, that holds promise for studying self-management of health behaviours and will present findings from an analysis of how the use of photo elicitation interviews contributed additional insights into self-management beyond those generated from the data collected through the other methods used in the study. Method A qualitative, multiple-methods, multiple-case study was conducted with a purposive sample of 10 low-income women ages 40 to 64 with type 2 diabetes. Findings The photo elicitation interviews contributed insights beyond those generated from other study methods about how individuals viewed their self-management behaviours and how occupations changed across time. Implications Photo elicitation is a valuable research method for better understanding clients' chronic illness self-management practices. PMID:29898501

Comparing face-to-face and online qualitative research with people with multiple sclerosis.

PubMed

Synnot, Anneliese; Hill, Sophie; Summers, Michael; Taylor, Michael

2014-03-01

We compared face-to-face focus groups and an online forum in qualitative research with people with multiple sclerosis (MS) and family members. Although the merits and challenges of online qualitative research have been considered by others, there is limited literature directly comparing these two data collection methods for people with disability or chronic illness. Twenty-seven people participated in one of four focus groups and 33 people took part in an online forum. Demographic and MS-related characteristics were similar between the two groups, with a slight nonsignificant trend toward nonmetropolitan residence in online forum participants. There was a high level of overlap in the themes generated between groups. Participant responses in the online forum were more succinct and on-topic, yet in the focus groups interaction was greater. Online qualitative research methods can facilitate research participation for people with chronic illness or disability, yielding generally comparable information to that gathered via face-to-face methods.

Complex adaptive chronic care.

PubMed

Martin, Carmel; Sturmberg, Joachim

2009-06-01

The Chronic Care Model (CCM) is widely taken up as the universal operational framework for redesigning health systems to address the increasing chronic disease burden of an ageing population. Chronic care encompasses health promotion, prevention, self management, disease control, treatment and palliation to address 'chronicity' of long journeys through disease, illness and care in the varying contexts of complex health systems. Yet at an operational level, CCM activities are predominantly based on an evidence-base of discreet chronic disease interventions in specific settings; and their demonstrable impact is limited to processes of select disease management such as diabetes in specific disease management programs. This paper proposes a framework that makes sense of the nature of chronicity and its multiple dimensions beyond disease and argues for a set of building blocks and leverage points that should constitute the starting points for 'redesign'? Complex Adaptive Chronic Care is proposed as an idea for an explanatory and implementation framework for addressing chronicity in existing and future chronic care models. Chronicity is overtly conceptualized to encompass the phenomena of an individual journey, with simple and complicated, complex and chaotic phases, through long term asymptomatic disease to bodily dysfunction and illness, located in family and communities. Chronicity encompasses trajectories of self-care and health care, as health, illness and disease co-exist and co-evolve in the setting of primary care, local care networks and at times institutions. A systems approach to individuals in their multi-layered networks making sense of and optimizing experiences of their chronic illness would build on core values and agency around a local vision of health, empowerment of individuals and adaptive leadership, and it responds in line with the local values inherent in the community's disease-based knowledge and the local service's history and dynamics. Complex Adaptive Chronic Care exceeds the current notions of disease management as an endpoint. Primary care team members are system adaptors in partnership with individuals constructing their care and system leadership in response to chronic illness, and enable healthy resilience as well as personal healing and support. Outcomes of complex adaptive chronic care are the emergence of health in individuals and communities through adaptability, self-organization and empowerment. Chronic care reform from within a complex adaptive system framework is bottom up and emergent and stands in stark contrast to (but has to co-exist with) the prevailing protocol based disease care rewarding selective surrogate indicators of disease control. Frameworks such as the Chronic Care Model provide guidance, but do not replace individual experience, local adaptive leadership and responsiveness. The awareness of complexity means opening up problems to a different reality demanding different set of questions and approaches to answer them.

Childhood epilepsy: a critical review of cost-of-illness studies.

PubMed

Argumosa, Ana; Herranz, Josè Luis

2004-03-01

Epilepsy is an illness with multiple consequences and costs for children, families and society. There are only a few studies published on the cost of childhood epilepsy. The different methodologies used in these studies make it difficult to compare them or even to compare the cost of childhood epilepsy treatment with that of adult epilepsy. Nevertheless, studies highlight important differences in the distribution of costs associated with childhood epilepsy and epilepsy in adults. It is understandable that direct costs represent the higher percentage of the total cost associated with childhood epilepsy treatment, given the higher number of hospital admissions and investigations, as well as the complexity of therapeutic trials, while indirect costs represent the greater proportion in adult epilepsy treatment. In addition to age, the total cost associated with epilepsy also depends on other factors such as seizure frequency, the moment at which the illness cost is estimated and the local health care system. In summary, chronic illnesses not only have an influence on the physical and psychological development of children, they also impose costs on the family and society. Childhood epilepsy has greater economic costs than those generated by more prevalent, chronic illnesses.

Comparative cost analysis of housing and case management program for chronically ill homeless adults compared to usual care.

PubMed

Basu, Anirban; Kee, Romina; Buchanan, David; Sadowski, Laura S

2012-02-01

To assess the costs of a housing and case management program in a novel sample-homeless adults with chronic medical illnesses. The study used data from multiple sources: (1) electronic medical records for hospital, emergency room, and ambulatory medical and mental health visits; (2) institutional and regional databases for days in respite centers, jails, or prisons; and (3) interviews for days in nursing homes, shelters, substance abuse treatment centers, and case manager visits. Total costs were estimated using unit costs for each service. Randomized controlled trial of 407 homeless adults with chronic medical illnesses enrolled at two hospitals in Chicago, Illinois, and followed for 18 months. Compared to usual care, the intervention group generated an average annual cost savings of (-)$6,307 per person (95 percent CI: -16,616, 4,002; p = .23). Subgroup analyses of chronically homeless and those with HIV showed higher per person, annual cost savings of (-)$9,809 and (-)$6,622, respectively. Results were robust to sensitivity analysis using unit costs. The findings of this comprehensive, comparative cost analyses demonstrated an important average annual savings, though in this underpowered study these savings did not achieve statistical significance. © Health Research and Educational Trust.

Integrating physical activity into mental health services for persons with serious mental illness.

PubMed

Richardson, Caroline R; Faulkner, Guy; McDevitt, Judith; Skrinar, Gary S; Hutchinson, Dori S; Piette, John D

2005-03-01

This article reviews evidence supporting the need for interventions to promote physical activity among persons with serious mental illness. Principles of designing effective physical activity interventions are discussed along with ways to adapt such interventions for this population. Individuals with serious mental illness are at high risk of chronic diseases associated with sedentary behavior, including diabetes and cardiovascular disease. The effects of lifestyle modification on chronic disease outcomes are large and consistent across multiple studies. Evidence for the psychological benefits for clinical populations comes from two meta-analyses of outcomes of depressed patients that showed that effects of exercise were similar to those of psychotherapeutic interventions. Exercise can also alleviate secondary symptoms such as low self-esteem and social withdrawal. Although structured group programs can be effective for persons with serious mental illness, especially walking programs, lifestyle changes that focus on accumulation of moderate-intensity activity throughout the day may be most appropriate. Research suggests that exercise is well accepted by people with serious mental illness and is often considered one of the most valued components of treatment. Adherence to physical activity interventions appears comparable to that in the general population. Mental health service providers can provide effective, evidence-based physical activity interventions for individuals with serious mental illness.

Perceived quality of chronic illness care is associated with self-management: Results of a nationwide study in the Netherlands.

PubMed

van Houtum, L; Heijmans, M; Rijken, M; Groenewegen, P

2016-04-01

Healthcare providers are increasingly expected to help chronically ill patients understand their own central role in managing their illness. The aim of this study was to determine whether experiencing high-quality chronic illness care and having a nurse involved in their care relate to chronically ill people's self-management. Survey data from 699 people diagnosed with chronic diseases who participated in a nationwide Dutch panel-study were analysed using linear regression analysis, to estimate the association between chronic illness care and various aspects of patients' self-management, while controlling for their socio-demographic and illness characteristics. Chronically ill patients reported that the care they received was of high quality to some extent. Patients who had contact with a practise nurse or specialised nurse perceived the quality of the care they received as better than patients who only had contact with a GP or medical specialist. Patients' perceptions of the quality of care were positively related to all aspects of their self-management, whereas contact with a practise nurse or specialised nurse in itself was not. Chronically ill patients who have the experience to receive high-quality chronic illness care that focusses on patient activation, decision support, goal setting, problem solving, and coordination of care are better self-managers. Having a nurse involved in their care seems to be positively valued by chronically ill patients, but does not automatically imply better self-management. Copyright © 2016. Published by Elsevier Ireland Ltd.

“You Get Reminded You’re a Sick Person”: Personal Data Tracking and Patients With Multiple Chronic Conditions

PubMed Central

Witteman, Holly O; Hafeez, Baria; Provencher, Thierry; Van de Graaf, Mary; Wei, Esther

2015-01-01

Background Consumer health information technologies (HIT) that encourage self-tracking, such as diet and fitness tracking apps and disease journals, are attracting widespread interest among technology-oriented consumers (such as “quantified self” advocates), entrepreneurs, and the health care industry. Such electronic technologies could potentially benefit the growing population of patients with multiple chronic conditions (MCC). However, MCC is predominantly a condition of the elderly and disproportionately affects the less affluent, so it also seems possible that the barriers to use of consumer HIT would be particularly severe for this patient population. Objective Our aim was to explore the perspectives of individuals with MCC using a semistructured interview study. Our research questions were (1) How do individuals with MCC track their own health and medical data? and (2) How do patients and providers perceive and use patient-tracked data? Methods We used semistructured interviews with patients with multiple chronic diseases and providers with experience caring for such patients, as well as participation in a diabetes education group to triangulate emerging themes. Data were analyzed using grounded theory and thematic analysis. Recruitment and analysis took place iteratively until thematic saturation was reached. Results Interviews were conducted with 22 patients and 7 health care providers. The patients had an average of 3.5 chronic conditions, including type 2 diabetes, heart disease, chronic pain, and depression, and had regular relationships with an average of 5 providers. Four major themes arose from the interviews: (1) tracking this data feels like work for many patients, (2) personal medical data for individuals with chronic conditions are not simply objective facts, but instead provoke strong positive and negative emotions, value judgments, and diverse interpretations, (3) patients track for different purposes, ranging from sense-making to self-management to reporting to the doctor, and (4) patients often notice that physicians trust technologically measured data such as lab reports over patients’ self-tracked data. Conclusions Developers of consumer health information technologies for data tracking (such as diet and exercise apps or blood glucose logs) often assume patients have unlimited enthusiasm for tracking their own health data via technology. However, our findings potentially explain relatively low adoption of consumer HIT, as they suggest that patients with multiple chronic illnesses consider it work to track their own data, that the data can be emotionally charged, and that they may perceive that providers do not welcome it. Similar themes have been found in some individual chronic diseases but appeared more complex because patients often encountered “illness work” connected to multiple diseases simultaneously and frequently faced additional challenges from aging or difficult comorbidities such as chronic pain, depression, and anxiety. We suggest that to make a public health impact, consumer HIT developers should engage creatively with these pragmatic and emotional issues to reach an audience that is broader than technologically sophisticated early adopters. Novel technologies are likely to be successful only if they clearly reduce patient inconvenience and burden, helping them to accomplish their “illness work” more efficiently and effectively. PMID:26290186

"You Get Reminded You're a Sick Person": Personal Data Tracking and Patients With Multiple Chronic Conditions.

PubMed

Ancker, Jessica S; Witteman, Holly O; Hafeez, Baria; Provencher, Thierry; Van de Graaf, Mary; Wei, Esther

2015-08-19

Consumer health information technologies (HIT) that encourage self-tracking, such as diet and fitness tracking apps and disease journals, are attracting widespread interest among technology-oriented consumers (such as "quantified self" advocates), entrepreneurs, and the health care industry. Such electronic technologies could potentially benefit the growing population of patients with multiple chronic conditions (MCC). However, MCC is predominantly a condition of the elderly and disproportionately affects the less affluent, so it also seems possible that the barriers to use of consumer HIT would be particularly severe for this patient population. Our aim was to explore the perspectives of individuals with MCC using a semistructured interview study. Our research questions were (1) How do individuals with MCC track their own health and medical data? and (2) How do patients and providers perceive and use patient-tracked data? We used semistructured interviews with patients with multiple chronic diseases and providers with experience caring for such patients, as well as participation in a diabetes education group to triangulate emerging themes. Data were analyzed using grounded theory and thematic analysis. Recruitment and analysis took place iteratively until thematic saturation was reached. Interviews were conducted with 22 patients and 7 health care providers. The patients had an average of 3.5 chronic conditions, including type 2 diabetes, heart disease, chronic pain, and depression, and had regular relationships with an average of 5 providers. Four major themes arose from the interviews: (1) tracking this data feels like work for many patients, (2) personal medical data for individuals with chronic conditions are not simply objective facts, but instead provoke strong positive and negative emotions, value judgments, and diverse interpretations, (3) patients track for different purposes, ranging from sense-making to self-management to reporting to the doctor, and (4) patients often notice that physicians trust technologically measured data such as lab reports over patients' self-tracked data. Developers of consumer health information technologies for data tracking (such as diet and exercise apps or blood glucose logs) often assume patients have unlimited enthusiasm for tracking their own health data via technology. However, our findings potentially explain relatively low adoption of consumer HIT, as they suggest that patients with multiple chronic illnesses consider it work to track their own data, that the data can be emotionally charged, and that they may perceive that providers do not welcome it. Similar themes have been found in some individual chronic diseases but appeared more complex because patients often encountered "illness work" connected to multiple diseases simultaneously and frequently faced additional challenges from aging or difficult comorbidities such as chronic pain, depression, and anxiety. We suggest that to make a public health impact, consumer HIT developers should engage creatively with these pragmatic and emotional issues to reach an audience that is broader than technologically sophisticated early adopters. Novel technologies are likely to be successful only if they clearly reduce patient inconvenience and burden, helping them to accomplish their "illness work" more efficiently and effectively.

The representation of getting ill in adolescents with systemic lupus erythematosus.

PubMed

Ceppas Resende, Ondina Lúcia; Barbosa, Maria Tereza Serrano; Simões, Bruno Francisco Teixeira; Velasque, Luciane de Souza

This study, developed in a federal hospital in the city of Rio de Janeiro, has aimed to analyze the social representation of chronic disease and its treatment, in the perspective of adolescents and their caregivers. The sample consisted of 31 adolescents (11-21 years) with systemic lupus erythematosus and 19 caregivers (32-66 years), followed in the pediatrics and in the internal medicine outpatient clinics for a period of six months. Data was collected from the free association of words test, using chronic disease and treatment of chronic disease impulses, and later submitted to the Multiple Correspondence Analysis using the R software. The group of adolescents associated the impulse chronic disease with the words medication, bad, illness, difficulty, no cure, faith and joy; and in the group of caregivers, to care, treatment, no cure and the word 'no'. The impulse treatment of chronic disease was associated, in the group of adolescents, with the words patience, improvement, help, affection, care and bad; and in the group of caregivers, to caring, hope, schedule, knowledge, obedience, medication, professional and improvement. Caregivers also associated impulses and words according to age: chronic disease was associated with the word care (over 61 years), pain and impotence (42-61 years), treatment (22-41 years); and treatment of chronic disease, with the words strength (over 61 years), professional, knowledge and improvement (42-61 years), affection and schedule (22-41 years). Considering as subjective and dynamic the experience of getting ill, knowing the representations can contribute to the orientation of conduct and type of psychotherapeutic intervention needed. Copyright © 2016 Elsevier Editora Ltda. All rights reserved.

Chronically Ill Children in America: Background and Recommendations.

ERIC Educational Resources Information Center

Hobbs, Nicholas; And Others

The report examines chronic illness in children and considers issues and recommendations for change in public policies and programs affecting chronically ill children and their families. The background chapter notes the significance of the problem, reviews 11 diseases that are representative of the severe chronic illnesses of childhood: juvenile…

Development and psychometric evaluation of the Chronic Illness Anticipated Stigma Scale

PubMed Central

Quinn, Diane M.; Kalichman, Seth C.; Park, Crystal L.

2015-01-01

The Chronic Illness Anticipated Stigma Scale (CIASS) was developed to measure anticipated stigma (i.e., expectations of prejudice, stereotyping, and discrimination) among people living with chronic illnesses. The CIASS is a 12-item scale with three subscales differentiating among sources of anticipated stigma, including friends and family members, work colleagues, and healthcare workers. Results support the reliability, validity, and generalizability of the CIASS in two samples of people living with chronic illnesses. The CIASS was correlated with other stigma-related constructs as well as indicators of mental health, physical health, and health behaviors. The CIASS can help researchers gauge the degree to which people living with chronic illnesses anticipate stigma, better understand the processes by which anticipated stigma contributes to the health and behavior of people living with chronic illnesses, and compare the extent to which people living with different types of chronic illnesses anticipate stigma. PMID:22526525

A Study of Medication Compliance in Geriatric Patients with Chronic Illnesses at a Tertiary Care Hospital

PubMed Central

Shruthi, R.; Pundarikaksha, H.P.; Nagesh, G.N.; Tushar, T.J.

2016-01-01

Introduction Geriatric population is more prone for various chronic and recurrent illnesses like diabetes mellitus, hypertension, IHD, arthritic, neurodegenerative, gastrointestinal, ocular, genitourinary, respiratory disorders etc., which may require chronic medication with multiple drugs. Poor compliance in this age group accounts for medication wastage with increased cost of healthcare and substantial worsening of the disease with disability or death. Most of the human and economic costs associated with non adherence can be avoided by improving medication adherence. Aim To assess the level of medication compliance in elderly patients with chronic illnesses and to analyse the factors influencing medication compliance. Materials and Methods The study subjects were assessed by using twenty item structured questionnaires as per modified Morisky Medication Adherence Scale (MMAS). Results A total of 251 subjects of geriatric age group with chronic illnesses were assessed for the level of compliance for long term medications. The average number of medications 2.96±1.42 per subject and most of the subjects were receiving FDCs. The compliance level was assessed by way of interview using a twenty item structured pretested questionnaire as per modified MMAS. The level of compliance was good in 45.41%, moderate in 35.45% and poor in 19.12% of the study subjects. Conclusion The level of compliance positively correlated with the educational status of the study subjects and their awareness about the diseases and prescribed medications. The overall level of compliance was higher in subjects living with spouse or families, subjects without any functional impairment, subjects who were regular for the follow-up visits and also in subjects who did not experience any adverse events. PMID:28208878

The Chronic Illness Initiative: Supporting College Students with Chronic Illness Needs at DePaul University

ERIC Educational Resources Information Center

Royster, Lynn; Marshall, Olena

2008-01-01

College students with chronic illness find it difficult to succeed in traditional degree programs due to disruptions caused by relapses and unpredictable waxing and waning symptoms. College disability offices are often unable to help, both because their standard supports are not appropriate and because students with chronic illness frequently do…

The Special Educational Needs of Adolescents Living with Chronic Illness: A Literature Review

ERIC Educational Resources Information Center

Jackson, Megan

2013-01-01

Rates of chronic illness are increasing around the world and, accordingly, numbers of adolescent students living with chronic illness are also increasing. The challenges faced by these students and their teachers are complex. One of these challenges is the need of the adolescent with chronic illness to achieve some level of social conformity.…

Psychometric Testing of an Arabic Translation of the Revised-Illness Perception Questionnaire (IPQ-R) for Chronic Illness Patients.

PubMed

Aberkane, Salah

2017-08-01

Researchers lack a properly validated instrument to measure perceptions of chronic disease in Arabic language contexts. This study aimed to adapt and validate the Revised-Illness Perception Questionnaire (IPQ-R) for Arabic speaking chronic illness patients. A cross-sectional design was conducted to examine the psychometric properties of the adapted English version of the IPQ-R for Arabic speaking chronic illness patients. The study instrument was an Arabic version of the IPQ-R prepared through a translation process. The reliability and validity of the instrument were assessed using exploratory and confirmatory factor analysis and Cronbach's alpha coefficient. Three hundred and sixteen participants (ages 16-79) from the Batna region in Algeria completed the IPQ-R. A total of 316 (100%) patients responded to this study. Regarding internal consistency, Cronbach's alpha a coefficient was consistently higher than 0.45. Several areas of fit were identified and substantial changes to the measurement model were made, such as the deletion of 22 items from the original 38-item IPQ-R and two items from the original 18 causal items this accounted for 64.63% of the total variance, and the respecification of indicators had to be applied to achieve acceptable model fit. The final model consists of two sections: The 16-item Arabic IPQ-R, which had a good fit; (CMIN/Df = 1.30, P < 0.001, CFI = 0.93, RMSEA = 0.08, SRMR = 0.03), and was similar to the Arabic 16 causal items (CMIN/DF = 1.11, P < 0.001, CFI = 0.95, RMSEA = 0.080, SRMR = 0.02). The factor structure concurred with prior finding despite differences to the type of sample and cultural considerations that might explain these findings. Replication of this study in Algerian patients with specific illness, such as silicosis, breast cancer and multiple sclerosis. Further psychometric testing on other large samples is recommended.

Psychometric Testing of an Arabic Translation of the Revised-Illness Perception Questionnaire (IPQ-R) for Chronic Illness Patients

PubMed Central

Aberkane, Salah

2017-01-01

Background Researchers lack a properly validated instrument to measure perceptions of chronic disease in Arabic language contexts. This study aimed to adapt and validate the Revised-Illness Perception Questionnaire (IPQ-R) for Arabic speaking chronic illness patients. Methods A cross-sectional design was conducted to examine the psychometric properties of the adapted English version of the IPQ-R for Arabic speaking chronic illness patients. The study instrument was an Arabic version of the IPQ-R prepared through a translation process. The reliability and validity of the instrument were assessed using exploratory and confirmatory factor analysis and Cronbach’s alpha coefficient. Three hundred and sixteen participants (ages 16–79) from the Batna region in Algeria completed the IPQ-R. Results A total of 316 (100%) patients responded to this study. Regarding internal consistency, Cronbach’s alpha a coefficient was consistently higher than 0.45. Several areas of fit were identified and substantial changes to the measurement model were made, such as the deletion of 22 items from the original 38-item IPQ-R and two items from the original 18 causal items this accounted for 64.63% of the total variance, and the respecification of indicators had to be applied to achieve acceptable model fit. The final model consists of two sections: The 16–item Arabic IPQ-R, which had a good fit; (CMIN/Df = 1.30, P < 0.001, CFI = 0.93, RMSEA = 0.08, SRMR = 0.03), and was similar to the Arabic 16 causal items (CMIN/DF = 1.11, P < 0.001, CFI = 0.95, RMSEA = 0.080, SRMR = 0.02). Conclusion The factor structure concurred with prior finding despite differences to the type of sample and cultural considerations that might explain these findings. Replication of this study in Algerian patients with specific illness, such as silicosis, breast cancer and multiple sclerosis. Further psychometric testing on other large samples is recommended. PMID:28951692

Caring for teens with chronic illness: risky business?

PubMed

Louis-Jacques, Jennifer; Samples, Cathryn

2011-08-01

With advances in medicine, more children with chronic illness are reaching adolescence and young adulthood. Research has shown that this group is not immune to the behavioral risks endorsed by healthy adolescents. Recent literature exploring the etiology of risk behaviors and their impact on chronic illness is presented. Risk taking may be the result of differential maturation of two distinct parts of the adolescent brain. Risk taking can be considered normal in adolescents with chronic illness, but there is some evidence that chronic illness affects normal psychosocial development. Moreover, evidence supports that chronic illness can lead to disparities in risk education and assessment because of disease focused management rather than a more comprehensive approach. Youth living with chronic illnesses face unique challenges in accomplishing the developmental tasks of adolescence. These challenges include risk behaviors, which jeopardize current and future health. The reasons for risk taking are multifactorial and require providers to make the adolescent and not the illness the center of management. More research is needed on how to improve developmentally appropriate and relevant interventions to aid in safe passage into adulthood.

An Investigation of Lower Urinary Tract Symptoms in Women Aged 40 and Over.

PubMed

Sever, Neziha; Oskay, Umran

2017-01-01

The objective of this study was to determine lower urinary tract symptoms (LUTS) and associated risk factors in women aged 40 years and over. The study was carried out with a total of 312 women. The data were collected between 1 January 2009 and 30 July 2010. As research instruments, an interview form of 19 questions that questioned personal characteristics and was developed by researchers, and the Bristol Female Lower Urinary Tract Symptoms (BFLUTS) Questionnaire evaluating lower urinary tract symptoms were used. Linear regression analysis was used to detect associated risk factors. The rates of urgency, urinary incontinence, nocturia, and frequency symptoms were 61.5, 52.2, 18.9, and 25%, respectively. BFLUTS total scores increased with age, but the present study has detected no statistically significant differences (P > 0.05). BFLUTS scores of the women demonstrated statistically significant differences according to several risk factors including menopause status (P = 0.03), presence of chronic illness (P = 0.000), medicine use (P = 0.000), recurrent urinary tract infections (P = 0.000), body mass index (BMI) (P = 0.004), delivery number (P = 0.005) and chronic constipation (P = 0.002). Multiple linear regression analysis determined that frequent urinary tract infections, presence of chronic illness, chronic constipation, BMI and number of deliveries were significantly related to LUTS development. The most common LUTS was urgency in women aged 40 years and older. Recurrent urinary tract infection was determined as the most significant risk factor for LUTS, followed by chronic illness, chronic constipation, higher BMI and parity. © 2015 Wiley Publishing Asia Pty Ltd.

Illness Uncertainty and Illness Intrusiveness as Predictors of Depressive and Anxious Symptomology in College Students with Chronic Illnesses

ERIC Educational Resources Information Center

Mullins, Alexandria J.; Gamwell, Kaitlyn L.; Sharkey, Christina M.; Bakula, Dana M.; Tackett, Alayna P.; Suorsa, Kristina I.; Chaney, John M.; Mullins, Larry L.

2017-01-01

Objective: To examine predictors of psychological functioning in college students with chronic illnesses. Participants: Participants (N = 1413) included 364 students with self-reported diagnoses of asthma or allergies, 148 students with other chronic illnesses (eg, epilepsy, type 1 diabetes), and 901 healthy students. Data were collected between…

Health-related quality of life of youth with inflammatory bowel disease: a comparison with published data using the PedsQL 4.0 generic core scales.

PubMed

Kunz, Jennifer Hauser; Hommel, Kevin A; Greenley, Rachel Neff

2010-06-01

This study compared youth and parent-proxy reports of health-related quality of life (HRQoL) among youth with inflammatory bowel disease (IBD) to published comparison group data and examined concordance between youth and parent-proxy reports of HRQoL. One hundred thirty-six youth and parent-proxy reports on the PedsQL 4.0 Generic Core Scales were compared to published data from chronically ill, acutely ill, and healthy comparison groups using independent samples t-tests. Reporter agreement was examined using paired samples t-tests and intraclass correlations (ICCs). Youth with IBD reported lower psychosocial functioning than the healthy comparison group, higher physical and social functioning than the chronically ill group, and lower school functioning than all published comparison groups. Parent-proxy reports of youth HRQoL were higher than the chronically ill group, but lower than the healthy group on all scales except psychosocial functioning. Youth with active IBD reported lower physical health domain scores than youth with inactive disease. Concordance between youth and parent-proxy reports was moderate, with the lowest agreement in school and social functioning. Youth with IBD and their parents rate HRQoL as lower than healthy youth but do not perceive the impact of IBD to be as limiting as in other chronic conditions. Youth report suggests that IBD may be particularly detrimental to HRQoL in the school functioning domain. Moderate agreement between parent and youth reports substantiates continued use of multiple informants in studies of pediatric HRQoL.

Physiological and functional failure in chronic obstructive pulmonary disease, congestive heart failure and cancer: a debilitating intersection of sarcopenia, cachexia and breathlessness.

PubMed

Dudgeon, Deborah; Baracos, Vickie E

2016-09-01

Loss of skeletal muscle mass and cachexia are important manifestations of chronic obstructive pulmonary disease and have been associated with breathlessness, functional limitation and poor prognosis. A number of other life-limiting illnesses, including cancer and chronic heart failure as well as acute conditions seen in ICU such as sepsis, are characteristically associated with cachexia and sarcopenia. These conditions may have respiratory muscle atrophy of sufficient magnitude to contribute to the development of breathlessness and associated functional limitation. The purpose of this review is to summarize findings related to a direct role for severe respiratory muscle wasting in the etiology of breathlessness in advanced, life limiting illness. Localized wasting of respiratory muscles appears to be part of systemic wasting of skeletal muscles, driven by deconditioning, nutritional insufficiencies and inflammation, and because of disease-specific factors (tumor factors and exacerbations), anabolic insufficiency, autonomic dysfunction, drugs (such as corticosteroids and chemotherapy agents), mechanical ventilation and comorbidities. Marked morphological and biochemical abnormalities have been noted in diaphragm muscle biopsies. Older patients with multiple comorbidities associated with muscle loss and cachexia are likely to be at elevated risk of respiratory muscle atrophy and functional loss, because of the presence of multiple, interacting etiologic factors.

Increased prevalence of chronic physical health disorders in Australians with diagnosed mental illness.

PubMed

Scott, David; Burke, Karena; Williams, Susan; Happell, Brenda; Canoy, Doreen; Ronan, Kevin

2012-10-01

To compare chronic physical health disorder prevalence amongst Australian adults with and without mental illness. Total n=1,716 participants (58% female) with a mean age of 52 ± 13 years (range: 18 to 89 years) completed an online survey of Australian adults in 2010. Outcome measures including prevalence of chronic physical conditions and self-reported body mass index (BMI) in n=387 (23%) with a self-reported mental illness diagnosis were compared to respondents without mental illness. A significantly higher proportion of participants with mental illness were obese (BMI ≥ 30; 31 vs 24%, p=0.005). Adjusted odds ratios (OR) for coronary heart disease, diabetes, chronic bronchitis or emphysema, asthma, irritable bowel syndrome, and food allergies or intolerances (OR range: 1.54-3.19) demonstrated that chronic physical disorders were significantly more common in participants with a mental illness. Australian adults with a diagnosis for mental illness have a significantly increased likelihood of demonstrating chronic physical health disorders compared to persons without mental illness. Health professionals must be alert to the increased likelihood of comorbid chronic physical disorders in persons with a mental illness and should consider the adoption of holistic approaches when treating those with either a mental or physical illness. © 2012 The Authors. ANZJPH © 2012 Public Health Association of Australia.

Self-esteem of children and adolescents with chronic illness: a meta-analysis.

PubMed

Pinquart, M

2013-03-01

Chronic illness may be a risk factor for low self-esteem; however, previous meta-analyses are inconclusive whether children with a chronic illness have lower self-esteem than their healthy peers. The goal of the present study was to summarize available research in order to compare the self-esteem of children and adolescents with a chronic illness with that of healthy children. Random-effects meta-analysis was used to integrate the results of 621 empirical studies that compare levels of self-esteem of children with a chronic physical illness with healthy peers or general test norms. Studies were identified via the electronic databases Adolesc, Embase, Google Scholar, MEDLINE, PSNYDEX, PSYCINFO, and cross-referencing. Children with chronic illnesses have lower self-esteem than healthy peers or test norms (g = -0.18 standard deviation units). The lowest levels of self-esteem were observed in children with chronic fatigue syndrome and chronic headaches. Lower levels of self-esteem in children with a chronic illness were found in girls than in boys, in adolescents than in children, in children from developing or threshold countries, when results were collected from observer ratings rather than child reports, in studies published in the 1990s, and when children with chronic illnesses were directly compared with healthy children instead of test norms. Paediatricians, parents, and teachers should promote experiences of success and positive peer-relations, which are important sources of self-esteem. In addition, psychosocial interventions for children with chronic illnesses should be offered for children with reduced self-esteem. © 2012 Blackwell Publishing Ltd.

Myalgic encephalomyelitis/chronic fatigue syndrome and encephalomyelitis disseminata/multiple sclerosis show remarkable levels of similarity in phenomenology and neuroimmune characteristics

PubMed Central

2013-01-01

Background ‘Encephalomyelitis disseminata’ (multiple sclerosis) and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) are both classified as diseases of the central nervous system by the World Health Organization. This review aims to compare the phenomenological and neuroimmune characteristics of MS with those of ME/CFS. Discussion There are remarkable phenomenological and neuroimmune overlaps between both disorders. Patients with ME/CFS and MS both experience severe levels of disabling fatigue and a worsening of symptoms following exercise and resort to energy conservation strategies in an attempt to meet the energy demands of day-to-day living. Debilitating autonomic symptoms, diminished cardiac responses to exercise, orthostatic intolerance and postural hypotension are experienced by patients with both illnesses. Both disorders show a relapsing-remitting or progressive course, while infections and psychosocial stress play a large part in worsening of fatigue symptoms. Activated immunoinflammatory, oxidative and nitrosative (O+NS) pathways and autoimmunity occur in both illnesses. The consequences of O+NS damage to self-epitopes is evidenced by the almost bewildering and almost identical array of autoantibodies formed against damaged epitopes seen in both illnesses. Mitochondrial dysfunctions, including lowered levels of ATP, decreased phosphocreatine synthesis and impaired oxidative phosphorylation, are heavily involved in the pathophysiology of both MS and ME/CFS. The findings produced by neuroimaging techniques are quite similar in both illnesses and show decreased cerebral blood flow, atrophy, gray matter reduction, white matter hyperintensities, increased cerebral lactate and choline signaling and lowered acetyl-aspartate levels. Summary This review shows that there are neuroimmune similarities between MS and ME/CFS. This further substantiates the view that ME/CFS is a neuroimmune illness and that patients with MS are immunologically primed to develop symptoms of ME/CFS. PMID:24229326

Perceived discrimination, race and health in South Africa.

PubMed

Williams, David R; Gonzalez, Hector M; Williams, Stacey; Mohammed, Selina A; Moomal, Hashim; Stein, Dan J

2008-08-01

To assess the levels of perceived acute and chronic racial and non-racial discrimination in South Africa, their association with health, and the extent to which they contribute to racial differences in physical and mental health, data were used from a national probability sample of adults, the South African Stress and Health Study (SASH). All Black groups in South Africa (African, Coloured and Indian) were two to four times more likely than Whites to report acute and chronic experiences of racial discrimination. Africans and Coloureds report higher levels of ill health than Whites, but acute and chronic racial discrimination were unrelated to ill health and unimportant in accounting for racial differences in self-rated health. In contrast, all Black groups had higher levels of psychological distress than Whites, and perceived chronic discrimination was positively associated with distress. Moreover, these experiences accounted for some of the residual racial differences in distress after adjustment for socioeconomic status. Our main findings indicate that, in a historically racialized society, perceived chronic racial and especially non-racial discrimination acts independently of demographic factors, other stressors, psychological factors (social desirability, self-esteem and personal mastery), and multiple SES indicators to adversely affect mental health.

Perceived Discrimination, Race and Health in South Africa

PubMed Central

Williams, David R.; Gonzalez, Hector M; Williams, Stacey; Mohammed, Selina A; Moomal, Hashim; Stein, Dan J

2009-01-01

To assess the levels of perceived acute and chronic racial and non-racial discrimination in South Africa, their association with health, and the extent to which they contribute to racial differences in physical and mental health, data were used from a national probability sample of adults, the South African Stress and Health Study (SASH). All Black groups in South Africa (African, Coloured and Indian) were two to four times more likely than Whites to report acute and chronic experiences of racial discrimination. Africans and Coloureds report higher levels of ill health than Whites, but acute and chronic racial discrimination were unrelated to ill health and unimportant in accounting for racial differences in self rated health. In contrast, all Black groups had higher levels of psychological distress than Whites, and perceived chronic discrimination, was positively associated with distress. Moreover, these experiences accounted for some of the residual racial differences in distress after adjustment for socioeconomic status. Our main findings indicate that, in a historically racialized society, perceived chronic racial and especially non-racial discrimination acts independently of demographic factors, other stressors, psychological factors (social desirability, self-esteem and personal mastery), and multiple SES indicators to adversely affect mental health. PMID:18486292

[Children of mentally ill parents: the impact of parental psychiatric diagnosis, comorbidity, severity and chronicity on the well-being of children].

PubMed

Wiegand-Grefe, S; Geers, P; Petermann, F; Plass, A

2011-01-01

Children of mentally ill parents are known as a high-risk population for the development of psychological disturbances. In this study, the psychiatric diagnoses, the severity and chronicity and the comorbidity of a parental mental illness as well as the non-specific parameters were examined in terms of their influence on the children's mental health. n = 62 children of psychiatric inpatients were examined regarding their psychic symptomatology, assessed with the CBCL-Parent Report Form. The psychiatric ICD-10 diagnoses and comorbidities as well as the severity (CGI) of the mentally ill parents were collected from psychiatric assessment forms. Children of parents with personality disorders (PD) are evaluated as highly affected by their parents, regardless of whether the PD is the primary or the comorbid diagnosis. Children of parents suffering from addictive disorders are seen as the least affected by their parents. Overall, children of parents with multiple diagnoses tend to be rated as more affected. Severity of illness and chronicity do not have a considerable impact on the children's development of mental health problems. Strikingly, children with a high length of exposure to a parental illness are psychologically less affected than children with shorter times of exposure. Thus, children possibly acquire effective coping mechanisms with increasing time of exposure. The results reveal the necessity of preventive programmes, especially in case of personality disorders. In addition the necessity for external assessment of the children becomes clear, especially in those cases where the parents exhibit a poor acceptance of their disease. © Georg Thieme Verlag KG Stuttgart · New York.

When the ringing in the ears gets unbearable: Illness representations, self-instructions and adjustment to tinnitus.

PubMed

Vollmann, Manja; Kalkouskaya, Natallia; Langguth, Berthold; Scharloo, Margreet

2012-08-01

Chronic tinnitus can severely impair a person's quality of life. The degree of impairment, however, is not closely related to tinnitus loudness. Applying the common sense model (CSM) of self-regulation of health and illness, this study investigated to what extent psychological factors, i.e. illness representations and positive/negative self-instructions, are associated with the degree of tinnitus-related complaints. In this cross-sectional study, 118 patients diagnosed with chronic tinnitus filled in questionnaires assessing illness representations (IPQ-R), positive and negative self-instructions (TRSS), and tinnitus-related complaints (TQ). The regression analysis yielded a number of significant associations between illness representations and tinnitus-related complaints, particularly for the IPQ-R dimensions identity, consequences, coherence, and emotional representations. With regard to self-instructions and tinnitus-related complaints, significant effects were found only for negative self-instructions. Moreover, multiple mediation analyses revealed that the effects of consequences and emotional representations on tinnitus-related complaints were (partially) due to the use of negative self-instructions. Psychological factors are strongly related to the extent of tinnitus-related complaints. The findings provide an indication of which aspects should be targeted in psychological and psychotherapeutic tinnitus treatment. Copyright © 2012 Elsevier Inc. All rights reserved.

Loneliness and Quality of Life in Chronically Ill Rural Older Adults

PubMed Central

Theeke, Laurie A.; Mallow, Jennifer

2015-01-01

Background Loneliness is a contributing factor to various health problems in older adults, including complex chronic illness, functional decline, and increased risk of mortality. Objectives A pilot study was conducted to learn more about the prevalence of loneliness in rural older adults with chronic illness and how it affects their quality of life. The purposes of the data analysis reported here were twofold: to describe loneliness, chronic illness diagnoses, chronic illness control measures, prescription medication use, and quality of life in a sample of rural older adults; and to examine the relationships among these elements. Methods A convenience sample of 60 chronically ill older adults who were community dwelling and living in Appalachia was assessed during face-to-face interviews for loneliness and quality of life, using the University of California, Los Angeles (UCLA) Loneliness Scale (version 3) and the CASP-12 quality of life scale. Chronic illness diagnoses, chronic illness control measures, and medication use data were collected through review of participants’ electronic medical records. Results Overall mean loneliness scores indicated significant loneliness. Participants with a mood disorder such as anxiety or depression had the highest mean loneliness scores, followed by those with lung disease and those with heart disease. Furthermore, participants with mood disorders, lung disease, or heart disease had significantly higher loneliness scores than those without these conditions. Loneliness was significantly related to total number of chronic illnesses and use of benzodiazepines. Use of benzodiazepines, diuretics, nitrates, and bronchodilators were each associated with a lower quality of life. Conclusions Nurses should assess for loneliness as part of their comprehensive assessment of patients with chronic illness. Further research is needed to design and test interventions for loneliness. PMID:23958674

An Integrative Psychotherapy Approach to Foster Community Engagement and Rehabilitation in Schizophrenia: A Case Study Illustration.

PubMed

Kukla, Marina; Whitesel, Frankie; Lysaker, Paul H

2016-02-01

This case study illustrates the use of a long-term integrative psychotherapy approach with a middle- aged man with chronic schizophrenia and a mood disorder. The case of "Holst" describes a man with a history of insecure attachment and trauma who later went on to contract a serious chronic illness, precipitating the onset of psychotic symptoms, depression, and chronic suicidal ideation, resulting in multiple hospitalizations. Combining metacognition-oriented therapy with elements of cognitive behavioral therapy and psychiatric rehabilitation, this approach fostered significantly improved community functioning and attainment of personal goals over time. Through the journey of therapy, the patient also developed a more coherent narrative about his life, established a stable sense of self, and became an active agent in the world. This case illustration demonstrates that these three different approaches can be used in a sequential and complementary fashion to foster recovery in the midst of serious physical and mental illness. © 2015 Wiley Periodicals, Inc.

A time-series study of sick building syndrome: chronic, biotoxin-associated illness from exposure to water-damaged buildings.

PubMed

Shoemaker, Ritchie C; House, Dennis E

2005-01-01

The human health risk for chronic illnesses involving multiple body systems following inhalation exposure to the indoor environments of water-damaged buildings (WDBs) has remained poorly characterized and the subject of intense controversy. The current study assessed the hypothesis that exposure to the indoor environments of WDBs with visible microbial colonization was associated with illness. The study used a cross-sectional design with assessments at five time points, and the interventions of cholestyramine (CSM) therapy, exposure avoidance following therapy, and reexposure to the buildings after illness resolution. The methodological approach included oral administration of questionnaires, medical examinations, laboratory analyses, pulmonary function testing, and measurements of visual function. Of the 21 study volunteers, 19 completed assessment at each of the five time points. Data at Time Point 1 indicated multiple symptoms involving at least four organ systems in all study participants, a restrictive respiratory condition in four participants, and abnormally low visual contrast sensitivity (VCS) in 18 participants. Serum leptin levels were abnormally high and alpha melanocyte stimulating hormone (MSH) levels were abnormally low. Assessments at Time Point 2, following 2 weeks of CSM therapy, indicated a highly significant improvement in health status. Improvement was maintained at Time Point 3, which followed exposure avoidance without therapy. Reexposure to the WDBs resulted in illness reacquisition in all participants within 1 to 7 days. Following another round of CSM therapy, assessments at Time Point 5 indicated a highly significant improvement in health status. The group-mean number of symptoms decreased from 14.9+/-0.8 S.E.M. at Time Point 1 to 1.2+/-0.3 S.E.M., and the VCS deficit of approximately 50% at Time Point 1 was fully resolved. Leptin and MSH levels showed statistically significant improvement. The results indicated that CSM was an effective therapeutic agent, that VCS was a sensitive and specific indicator of neurologic function, and that illness involved systemic and hypothalamic processes. Although the results supported the general hypothesis that illness was associated with exposure to the WDBs, this conclusion was tempered by several study limitations. Exposure to specific agents was not demonstrated, study participants were not randomly selected, and double-blinding procedures were not used. Additional human and animal studies are needed to confirm this conclusion, investigate the role of complex mixtures of bacteria, fungi, mycotoxins, endotoxins, and antigens in illness causation, and characterize modes of action. Such data will improve the assessment of human health risk from chronic exposure to WDBs.

The duality of health technology in chronic illness: how designers envision our future.

PubMed

Lehoux, Pascale

2008-06-01

This essay critically explores the role of technological innovation in the constitution of chronic states and illness. Drawing on the co-construction of technology and society perspective, it focuses more specifically on the way in which innovation designers envisage the enhancement of the chronically ill and build certain kinds of socio-technical configuration to deal with chronic illness. Using the case of ;intelligent distance patient monitoring' as an illustration, the paper argues that technology creates as much as it solves the problem of chronic illness. Technology is recursively embedded in chronic illness and it generates dual effects: it constrains and sustains users' daily practices. Only by recognizing technology's duality and eventually transcending it will research and policy initiatives be able to deal creatively and responsibly with the design of our future health experiences.

Young adult outcomes of children growing up with chronic illness: an analysis of the National Longitudinal Study of Adolescent Health.

PubMed

Maslow, Gary R; Haydon, Abigail A; Ford, Carol Ann; Halpern, Carolyn Tucker

2011-03-01

To examine young adult outcomes in a nationally representative US cohort of young adults growing up with a chronic illness. Secondary analysis of nationally representative data from wave III (in 2001) of the National Longitudinal Study of Adolescent Health. United States. The analytic sample comprised 13 236 young adults aged 18 to 28 years at wave III. Self-report of a chronic physical illness (asthma, cancer, diabetes mellitus, or epilepsy) in adolescence. Respondents with asthma or nonasthmatic chronic illness (cancer, diabetes mellitus, or epilepsy) were compared with individuals without these conditions. Self-report of high school graduation, ever having employment, currently having employment, living with a parent/guardian, and ever receiving public assistance. Three percent of young adults had nonasthmatic chronic illness (cancer, diabetes, or epilepsy), and 16.0% had asthma. Most young adults with chronic illness graduated high school (81.3%) and currently had employment (60.4%). However, compared with healthy young adults, those with nonasthmatic chronic illness were significantly less likely to graduate high school, ever have had employment, or currently have employment and were more likely to receive public assistance. Compared with young adults with asthma, those with nonasthmatic chronic illness again had significantly worse young adult outcomes on all measures. Most young adults growing up with a chronic illness graduate high school and have employment. However, these young adults are significantly less likely than their healthy peers to achieve these important educational and vocational milestones.

Putting policy into practice? Poverty and people with serious mental illness.

PubMed

Wilton, Robert

2004-01-01

This paper addresses the effects of chronic poverty on people with serious mental illness. More specifically, we are concerned with the extent to which welfare restructuring, by deepening the poverty facing people with serious mental illness, undermines the expressed intent of mental health policy to improve the quality of life (QOL) of this population. The province of Ontario in Canada forms the setting for the study. The paper first examines recent trends in mental health care and social assistance policy in Ontario. While income support is consistently recognized as a core element of mental health care, welfare restructuring has led to a significant decline in the real value of income supports received by people with serious mental illness. The paper then examines the implications of this trend for the QOL of residential care facility tenants in Hamilton, Ontario. Here, the case study is explicitly connected to QOL scholarship. In addition, the study is grounded in an analysis of the broader transformation of the welfare state in Ontario. Interview data suggest that tenants experience chronic poverty that has a deleterious impact on multiple life domains including basic needs, family, social relations, leisure and self-esteem. Implications for research and policy are discussed.

The Use of Self-Care Agency To Meet the Need for Solitude and Social Interaction by Chronically Ill Individuals.

ERIC Educational Resources Information Center

Burns, Margaret A.

This study examined the effect of chronic illness on the individual's ability to meet his or her need for solitude and for social interaction by exploring how chronically ill individuals used their own ability (self-care agency) to meet these needs. Subjects were 90 chronically ill older persons, 30 of whom were living at home, 30 who lived in a…

Cultural expressions of bodily awareness among chronically ill Filipino Americans.

PubMed

Becker, Gay

2003-01-01

To describe Filipino Americans' cultural traditions surrounding bodily awareness, especially how the principle of balance informs their views, and the link to self-management of chronic illness. This qualitative study used semistructured interviews with 85 Filipino Americans between the ages of 46 and 97 years. Volunteers were recruited from numerous health care sites in 1 geographic location in the United States. Respondents had 1 or more chronic illnesses. Taped and transcribed interviews were coded and evaluated for themes. The concept of balance was central to Filipino Americans' portrayal of bodily awareness of signs and symptoms related to chronic illnesses, as well as to actions they took to manage their chronic illnesses. Efforts were made to control chronic illnesses through a variety of self-care practices. Diet posed a particular challenge because of the symbolic importance of food in Filipino culture and its use in the maintenance of social relationships. The ways in which Filipino Americans combine attention to the body, values of balance and harmony, and emphasis on social well-being result in heightened attention to bodily processes. Filipino Americans' emphasis on bodily awareness suggests that this particular cultural strength can be used to enhance chronic illness management. Awareness of the cultural traditions of Filipino Americans can facilitate patient education about how to manage chronic illnesses.

Resilience in the face of serious illness among chronically ill African Americans in later life.

PubMed

Becker, Gay; Newsom, Edwina

2005-07-01

The purpose of this work was to examine older African Americans' philosophies about their chronic illnesses and how those philosophies affected chronic illness management. Three to five in-depth interviews were conducted over the course of several years with 38 respondents between the ages of 65 and 91. Both open-ended and semistructured questions were asked. Respondents demonstrated determination, perseverance, and tenacity no matter how serious their illnesses were. Racism was instrumental in shaping the responses of these African Americans to their illnesses through cultural values that emphasized independence, spirituality, and survival. Respondents demonstrated a resilient philosophy as they faced disabling illness. This research attests to the importance of examining racism in the analysis of how older ethnic minorities live with chronic illness, as it provides the context for understanding the development of culturally specific philosophies about illness. Resilience, as a culturally specific philosophy, is an important adjunct to chronic illness management in later life, and more needs to be understood about the dimensions that shape it by cultural group.

Contingent interaction during work and play tasks for mothers with multiple sclerosis and their daughters.

PubMed

Crist, P

1993-02-01

Occupational therapy has focused on activity as a catalyst for understanding human roles and interactions, regardless of whether disability or chronic illness is present. Parenting is an important interactional activity accompanied by specific role expectations. This investigation examined the interaction patterns of mothers with multiple sclerosis and their daughters. Thirty-one mothers with multiple sclerosis and their daughters aged 8 to 12 years were compared with 34 mothers without disabilities and their daughters aged 8 to 12 years. Videotaped mother-daughter interactions during a work task and a play task were scored by two raters for 11 different behaviors. These behaviors were collapsed into three behavioral composites--receptiveness, directiveness, and dissuasiveness--for statistical analysis. Statistical analysis revealed no significant differences between the two groups on the behavioral composites for either mothers or their daughters. The two tasks stimulated a different pattern of mother-daughter interactions. For both members of the dyad, interactions during the work task were more directive and less dissuasive than those in the play task. The clinical implication of this finding indicates the importance of understanding the influence of the task selected when observing interaction. Because of recent social and legal changes, understanding parenting and chronic illness is critical.

Effect of an enhanced medical home on serious illness and cost of care among high-risk children with chronic illness: a randomized clinical trial.

PubMed

Mosquera, Ricardo A; Avritscher, Elenir B C; Samuels, Cheryl L; Harris, Tomika S; Pedroza, Claudia; Evans, Patricia; Navarro, Fernando; Wootton, Susan H; Pacheco, Susan; Clifton, Guy; Moody, Shade; Franzini, Luisa; Zupancic, John; Tyson, Jon E

Patient-centered medical homes have not been shown to reduce adverse outcomes or costs in adults or children with chronic illness. To assess whether an enhanced medical home providing comprehensive care prevents serious illness (death, intensive care unit [ICU] admission, or hospital stay >7 days) and/or reduces costs among children with chronic illness. Randomized clinical trial of high-risk children with chronic illness (≥3 emergency department visits, ≥2 hospitalizations, or ≥1 pediatric ICU admissions during previous year, and >50% estimated risk for hospitalization) treated at a high-risk clinic at the University of Texas, Houston, and randomized to comprehensive care (n = 105) or usual care (n = 96). Enrollment was between March 2011 and February 2013 (when predefined stopping rules for benefit were met) and outcome evaluations continued through August 31, 2013. Comprehensive care included treatment from primary care clinicians and specialists in the same clinic with multiple features to promote prompt effective care. Usual care was provided locally in private offices or faculty-supervised clinics without modification. Primary outcome: children with a serious illness (death, ICU admission, or hospital stay >7 days), costs (health system perspective). Secondary outcomes: individual serious illnesses, medical services, Medicaid payments, and medical school revenues and costs. In an intent-to-treat analysis, comprehensive care decreased both the rate of children with a serious illness (10 per 100 child-years vs 22 for usual care; rate ratio [RR], 0.45 [95% CI, 0.28-0.73]), and total hospital and clinic costs ($16,523 vs $26,781 per child-year, respectively; cost ratio, 0.58 [95% CI, 0.38-0.88]). In analyses of net monetary benefit, the probability that comprehensive care was cost neutral or cost saving was 97%. Comprehensive care reduced (per 100 child-years) serious illnesses (16 vs 44 for usual care; RR, 0.33 [95% CI, 0.17-0.66]), emergency department visits (90 vs 190; RR, 0.48 [95% CI, 0.34-0.67]), hospitalizations (69 vs 131; RR, 0.51 [95% CI, 0.33-0.77]), pediatric ICU admissions (9 vs 26; RR, 0.35 [95% CI, 0.18-0.70]), and number of days in a hospital (276 vs 635; RR, 0.36 [95% CI, 0.19-0.67]). Medicaid payments were reduced by $6243 (95% CI, $1302-$11,678) per child-year. Medical school losses (costs minus revenues) increased by $6018 (95% CI, $5506-$6629) per child-year. Among high-risk children with chronic illness, an enhanced medical home that provided comprehensive care to promote prompt effective care vs usual care reduced serious illnesses and costs. These findings from a single site of selected patients with a limited number of clinicians require study in larger, broader populations before conclusions about generalizability to other settings can be reached. clinicaltrials.gov Identifier: NCT02128776.

Illness cognitions as a pathway between religiousness and subjective health in chronic cardiac patients.

PubMed

Karademas, Evangelos C

2010-03-01

The aim of this study was to examine the role of illness cognitions as a possible pathway between religiousness and subjective health in chronic illness. A sample of 135 chronic cardiac patients completed questionnaires about intrinsic religiousness, frequency of church service attendance, basic illness cognitions (i.e., helplessness, illness acceptance, perceived benefits), and physical and emotional well-being. According to the results, religiousness was significantly associated with subjective health. However, this relationship was indirect, with helplessness and illness acceptance serving as mediators between intrinsic religiousness and health. This finding is significant for understanding the complex relation of religiousness to chronic patients' well-being.

Arthritis symptoms, the work environment, and the future: measuring perceived job strain among employed persons with arthritis.

PubMed

Gignac, Monique A M; Sutton, Deborah; Badley, Elizabeth M

2007-06-15

To develop a measure of job strain related to differing aspects of working with arthritis and to examine the demographic, illness, work context, and psychosocial variables associated with it. Study participants were 292 employed individuals with osteoarthritis or inflammatory arthritis. Participants were from wave 3 of a 4-wave longitudinal study examining coping and adaptation efforts used to remain employed. Participants completed an interview-administered structured questionnaire, including a Chronic Illness Job Strain Scale (CIJSS) and questions on demographic (e.g., age, sex), illness and disability (e.g., disease type, pain, activity limitations), work context (e.g., job type, job control), and psychosocial variables (e.g., arthritis-work spillover, coworker/managerial support, job perceptions). Principal component analysis and multiple linear regression were used to analyze the data. A single factor solution emerged for the CIJSS. The scale had an internal reliability of 0.95. Greater job strain was reported for future uncertainty, balancing multiple roles, and difficulties accepting the disease than for current workplace conditions. Participants with inflammatory arthritis, more frequent severe pain, greater workplace activity limitations, fewer hours of work, less coworker support, and greater arthritis-work spillover reported greater job strain. The findings underscore the diverse areas that contribute to perceptions of job strain and suggest that existing models of job strain do not adequately capture the stress experienced by individuals working with chronic illnesses or the factors associated with job strain. Measures similar to the CIJSS can enhance the tools researchers and clinicians have available to examine the impact of arthritis in individuals' lives.

Evaluation of a family systems intervention for managing pediatric chronic illness: Mastering Each New Direction (MEND).

PubMed

Distelberg, Brian; Williams-Reade, Jackie; Tapanes, Daniel; Montgomery, Susanne; Pandit, Mayuri

2014-06-01

Family systems play a crucial, albeit complex, role in pediatric chronic illness. Unfortunately, very few psychosocial interventions are available to help these stressed families navigate the developmental steps of chronic illness. A new intervention (MEND) addresses the needs of these families and applies to a broad range of chronic illnesses. This article presents this family systems intervention as well as includes preliminary program evaluation data on 22 families that graduated from the program. Results show consistently strong effects across an array of psychosocial measures. Conclusions from this preliminary study suggest that families entering MEND present with high levels of stress due to the child's chronic illness, but after MEND, the level of stress and other functioning measures are comparable to those seen in healthy families, suggesting that the program offers a significant benefit to families with pediatric chronic illness. © 2014 FPI, Inc.

Evaluation of a Family Systems Intervention for Managing Pediatric Chronic Illness: Mastering Each New Direction (MEND)

PubMed Central

Distelberg, Brian; Williams-Reade, Jackie; Tapanes, Daniel; Montgomery, Susanne; Pandit, Mayuri

2015-01-01

Family systems play a crucial, albeit complex, role in pediatric chronic illness. Unfortunately, very few psychosocial interventions are available to help these stressed families navigate the developmental steps of chronic illness. A new intervention (MEND) addresses the needs of these families and applies to a broad range of chronic illnesses. This article presents this family systems intervention as well as includes preliminary program evaluation data on 22 families that graduated from the program. Results show consistently strong effects across an array of psychosocial measures. Conclusions from this preliminary study suggest that families entering MEND present with high levels of stress due to the child's chronic illness, but after MEND, the level of stress and other functioning measures are comparable to those seen in healthy families, suggesting that the program offers a significant benefit to families with pediatric chronic illness. PMID:24635346

Chronic Illnesses and Depressive Symptoms Among Older People: Functional Limitations as a Mediator and Self-Perceptions of Aging as a Moderator.

PubMed

Han, Jina

2017-05-01

This research examined the mediation of functional limitations in the relationship between chronic illnesses and depressive symptoms among older Americans along with tests for the moderation of self-perceptions of aging. Data from the Health and Retirement Study (2008, 2010, and 2012) were used. Longitudinal mediation models were tested using a sample of 3,382 Americans who responded to psychosocial questions and were over 65 years old in 2008. Functional limitations mediated the linkage between chronic illnesses and depressive symptoms. Negative self-perceptions of aging exacerbated the effects of chronic illnesses on depressive symptoms. Health care professionals should be aware of depressive symptoms in older adults reporting chronic illnesses and particularly in those reporting functional limitations. To decrease the risk of depressive symptoms caused by chronic illnesses, negative self-perceptions of aging may need to be challenged.

Social behaviour and illness information interact to influence the peer acceptance of children with chronic illness.

PubMed

Alderfer, M A; Wiebe, D J; Hartmann, D P

2001-09-01

Social behaviour was investigated as a contributor to the peer acceptance of children with chronic illness. We predicted that children with illness would receive less acceptance than children without illness, and that prosocial behaviour would improve acceptance, while aggressive behaviour would hamper it. Based upon attribution and cognitive bias theories, we also predicted that prosocial behaviour would be more beneficial and aggressive behaviour less damaging to the acceptance of children with illness compared to healthy children. A 3 (social behaviour: prosocial, aggressive, no information) x 2 (physical status: chronically ill, healthy) within-subjects analogue design was used. Preadolescents (N = 149) indicated social acceptance of hypothetical children portrayed in vignettes as either chronically ill or healthy with prosocial, aggressive, or no social behaviour. A 13-item social intentions scale gauged acceptance. The hypotheses were supported. Although children described as ill received lower acceptance ratings than healthy children, prosocial/ill children were more accepted than aggressive/ill children. Social behaviour interacted with physical status to affect acceptance. Social behaviour influences the peer acceptance of hypothetical children with chronic illness. Prosocial behaviour enhances acceptance of children described with illness, while aggressive behaviour hampers it. Additionally, prosocial behaviour is more beneficial, and aggressive behaviour is less damaging for children described as ill versus healthy. The potential processes by which peers judge acceptance of children with illness are discussed.

Suicidal Behaviour Among Adolescents and Young Adults with Self-Reported Chronic Illness.

PubMed

Ferro, Mark A; Rhodes, Anne E; Kimber, Melissa; Duncan, Laura; Boyle, Michael H; Georgiades, Katholiki; Gonzalez, Andrea; MacMillan, Harriet L

2017-12-01

The aims of this study were to estimate the: (1) 12-mo prevalence of suicidal thoughts, plans, and attempts in a population sample of adolescents and young adults with and without chronic illness; (2) associations among chronic illness and suicidal thoughts and behaviour (STB); and, (3) moderating roles of mood and substance use disorder on this association. Individuals were aged 15 to 30 y ( n = 5,248) from the Canadian Community Health Survey-Mental Health. Twelve-month STB and psychiatric disorder were measured using the World Health Organization Composite International Diagnostic Interview 3.0. Multinomial logistic regression examined associations between chronic illness and STB, adjusting for relevant sociodemographic and health characteristics. Product term interactions among chronic illness, mood, and substance use disorders were included in the regression models to examine potential moderating effects. Prevalence of suicidal thoughts, plans, and attempts was higher in individuals with chronic illness ( P < 0.01 for all). After adjustment, chronic illness increased the odds for suicidal thoughts [OR = 1.28 (1.01 to 1.64)], plans [OR = 2.34 (1.22 to 4.39)], and attempts [OR = 4.63 (1.52 to 14.34)]. In the presence v. absence of a mood disorder, the odds for suicidal thoughts were higher among individuals with chronic illness [OR = 1.89 (1.06 to 5.28)]. Suicidal thoughts and behaviours are common among adolescents and young adults with chronic illness, particularly among those with comorbid mood disorders. Health professionals should routinely ask about STB during assessments of their adolescent and young adult patients.

Young Adult Outcomes of Children Growing up with Chronic Illness: An analysis of the National Longitudinal Study of Adolescent Health

PubMed Central

Maslow, Gary R.; Haydon, Abigail; Ford, Carol Ann; Halpern, Carolyn Tucker

2012-01-01

Objective To examine young adult outcomes in a nationally representative US cohort of young adults who grew up with a chronic illness. Design Secondary analysis of nationally representative data from Wave III (2001) of the National Longitudinal Study of Adolescent Health. Setting United States Participants The analytic sample included 13,236 young adults 18–28 years old at Wave III. Main Exposure Self-report of a chronic physical illness (asthma, cancer, diabetes or epilepsy) in adolescence. Respondents with (1) asthma or (2) non-asthma chronic illness (cancer, diabetes, or epilepsy) were compared to subjects without these conditions. Main Outcome Measures Self-report of high school graduation, ever having a job, having a current job, living with parents, and ever receiving public assistance. Results Three percent of young adults had non-asthma chronic illness (cancer, diabetes, or epilepsy) and 16% had asthma. The majority of young adults with chronic illness graduated high school (81%) and were currently employed (60%). However, compared to healthy young adults, those with a non-asthma chronic illness were significantly less likely to graduate high school, ever have a job, or have a current job and were more likely to receive public assistance. When compared to young adults with asthma, young adults with non-asthma chronic illness again had significantly worse young adult outcomes on all measures. Conclusions Most young adults growing up with chronic illness graduate high school and are employed. However, these young adults are significantly less likely than their healthy peers to achieve these important educational and vocational milestones. PMID:21383274

Illness Identity in Adults with a Chronic Illness.

PubMed

Oris, Leen; Luyckx, Koen; Rassart, Jessica; Goubert, Liesbet; Goossens, Eva; Apers, Silke; Arat, Seher; Vandenberghe, Joris; Westhovens, René; Moons, Philip

2018-02-21

The present study examines the concept of illness identity, the degree to which a chronic illness is integrated into one's identity, in adults with a chronic illness by validating a new self-report questionnaire, the Illness Identity Questionnaire (IIQ). Self-report questionnaires on illness identity, psychological, and physical functioning were assessed in two samples: adults with congenital heart disease (22-78 year old; n = 276) and with multisystem connective tissue disorders (systemic lupus erythematosus or systemic sclerosis; 17-81 year old; n = 241). The IIQ could differentiate four illness identity states (i.e., engulfment, rejection, acceptance, and enrichment) in both samples, based on exploratory and confirmatory factor analysis. All four subscales proved to be reliable. Rejection and engulfment were related to maladaptive psychological and physical functioning, whereas acceptance and enrichment were related to adaptive psychological and physical functioning. The present findings underscore the importance of the concept of illness identity. The IIQ, a self-report questionnaire, is introduced to measure four different illness identity states in adults with a chronic illness.

PRISM: Enmeshment of illness and self-schema.

PubMed

Denton, Fiona; Sharpe, Louise; Schrieber, Leslie

2004-01-01

The Pictorial Representation of Illness and Self Measure (PRISM) is a recently developed tool purported to assess burden of suffering due to illness. The nature of the PRISM task suggests a conceptual link to the illness self-schema construct hypothesised to be present in some individuals with chronic illness. This study investigates the relationship between PRISM and schema as measured by cognitive bias. 43 patients with systemic lupus erythematosus (SLE) completed an information-processing task involving endorsement of positive and negative illness words as descriptors of themselves, followed by free recall of the words. The outcome measures were endorsement and recall bias for negative illness words. Patients also completed the PRISM task and were assessed on other physical and psychological variables. PRISM did not correlate significantly with age, depression, functional impairment or disease activity. In a multiple regression analysis, only recall bias made an independent contribution to PRISM. Illness self-schema appears to play a significant role in determining the way in which SLE patients complete the PRISM task. This is discussed in light of a schema enmeshment model recently proposed in the cognitive bias literature. Copyright 2004 S. Karger AG, Basel

The Impact of Chronic Illness on Psychosocial Stages of Human Development.

ERIC Educational Resources Information Center

Lapham, E. Virginia, Ed.; Shevlin, Kathleen M., Ed.

This book addresses critical issues regarding the impact of chronic illness and disability on human development. It was written for health care professionals who help chronically ill and disabled persons deal with the psychological and social as well as the biological aspects of their illness or disability. An expanded version of Erik Erikson's…

Chronic illness histories of adults entering treatment for co-occurring substance abuse and other mental health disorders.

PubMed

Chesher, Nicholas J; Bousman, Chad A; Gale, Maiken; Norman, Sonya B; Twamley, Elizabeth W; Heaton, Robert K; Everall, Ian P; Judd, Patricia A

2012-01-01

Little is known about the medical status of individuals entering treatment for co-occurring substance abuse and other mental disorders (COD). We analyzed the medical histories of 169 adults entering outpatient treatment for CODs, estimating lifetime prevalence of chronic illness and current smoking, comparing these rates to the general population, and examining psychiatric and substance-related correlates of chronic illness. Results revealed significantly higher prevalence of hypertension, asthma, arthritis, and smoking compared to the general US population, and showed an association between chronic illness and psychiatric symptom distress and substance use severity. Findings support integration of chronic illness management into COD treatment.  Copyright © American Academy of Addiction Psychiatry.

Identifying Care Coordination Interventions Provided to Community-Dwelling Older Adults Using Electronic Health Records

PubMed Central

Kim, Tae Youn; Marek, Karen D.; Coenen, Amy

2016-01-01

Although care coordination is a popular intervention, there is no standard method of delivery. Also little is known about who most benefits or characteristics that predict the amount of care coordination needed, especially with chronically ill older adults. The purpose of this study was to identify types and amount of nurse care coordination interventions provided to 231 chronically ill older adults who participated in a 12-month home care medication management program in the Midwestern. For each participant, the nurse care coordinator spent an average of 134 minutes/month providing in-person home care, 48 minutes/month of travel, and 18 minutes/month of indirect care occurring outside the home visit. This accounted for 67.2%, 23.8%, and 9.0% of nursing time respectively for home visits, travel, and indirect care. Four of 11 nursing interventions focused on medication management were provided to all participants. Seven of the 11 main interventions were individualized according to each person’s special needs. Wide variations were observed in time provided with in-person home care and communications with multiple stakeholders. Study findings indicate the importance of individualizing interventions and the variability in the amount of nursing time needed to provide care coordination to chronically ill older adults. PMID:26985762

Families living with chronic illness: beliefs about illness, family, and health care.

PubMed

Årestedt, Liselott; Benzein, Eva; Persson, Carina

2015-05-01

Beliefs can be described as the lenses through which we view the world. With emerging illness, beliefs about the illness experience become important for nurses to understand to enhance well-being and healing. The aim of this study was to illuminate illness beliefs of families living with chronic illness. A qualitative design was chosen, including repeated narrative research interviews with seven Swedish families living with chronic illness. Hermeneutic analysis was used to interpret the transcribed family interviews. The result described beliefs in families, both within and across families. Both core beliefs and secondary beliefs about illness, family, and health care were revealed. Illness beliefs have importance for how families respond to and manage situations that arise from their encounters with illness. Nurses have to make space for and listen to families' stories of illness to become aware of what beliefs may support and encourage family well-being and healing. The Illness Beliefs Model provides a touchstone whereby nurses can distinguish both individual and shared beliefs within families living with chronic illness and provide ideas for family intervention if needed. © The Author(s) 2015.

Growing up with a chronic illness: social success, educational/vocational distress.

PubMed

Maslow, Gary R; Haydon, Abigail; McRee, Annie-Laurie; Ford, Carol A; Halpern, Carolyn T

2011-08-01

We compared adult educational, vocational, and social outcomes among young adults with and without childhood-onset chronic illness in a nationally representative U.S. sample. We used data from Wave IV (2008) of the National Longitudinal Study of Adolescent Health. We compared respondents who reported childhood-onset cancer, heart disease, diabetes, or epilepsy with young adults without these chronic illnesses in terms of marriage, having children, living with parents, romantic relationship quality, educational attainment, income, and employment. Multivariate models controlled for sociodemographic factors and adult-onset chronic illness. As compared with those without childhood chronic illness, respondents with childhood chronic illness had similar odds of marriage (odds ratios [OR] = .89, 95% CI: .65-1.24), having children (OR = .99, 95% CI: .70-1.42), and living with parents (OR = 1.49, 95% CI .94-2.33), and similar reports of romantic relationship quality. However, the chronic illness group had lower odds of graduating college (OR = .49, 95% CI: .31-.78) and being employed (OR = .56, 95% CI: .39-.80), and higher odds of receiving public assistance (OR = 2.13, 95% CI: 1.39-3.25), and lower mean income. Young adults growing up with chronic illness succeed socially, but are at increased risk of poorer educational and vocational outcomes. Copyright © 2011 Society for Adolescent Health and Medicine. Published by Elsevier Inc. All rights reserved.

Growing Up With a Chronic Illness: Social Success, Educational/Vocational Distress

PubMed Central

Maslow, Gary R.; Haydon, Abigail; McRee, Annie-Laurie; Ford, Carol Ann; Halpern, Carolyn Tucker

2012-01-01

OBJECTIVES We compared adult educational, vocational, and social outcomes among young adults with and without childhood-onset chronic illness in a nationally representative US sample. METHODS We used data from Wave IV (2008) of the National Longitudinal Study of Adolescent Health. We compared respondents who reported childhood onset cancer, heart disease, diabetes, or epilepsy to young adults without these chronic illnesses in terms of marriage, having children, living with parents, romantic relationship quality, educational attainment, income and employment. Multivariate models controlled for socio-demographic factors and adult-onset chronic illness. RESULTS Compared to those without childhood chronic illness, respondents with childhood chronic illness had similar odds of marriage (OR=0.89, 95%CI: 0.65–1.24), having children (OR=0.99, 95%CI: 0.70–1.42), and living with parents (OR=1.49, 95%CI 0.94–2.33), and similar reports of romantic relationship quality. However, the chronic illness group had lower odds of graduating college (OR=0.49, 95%CI: 0.31–0.78) and being employed (OR=0.56, 95%CI: 0.39–0.80), and higher odds of receiving public assistance (OR=2.13, 95%CI: 1.39–3.25), and lower mean income. CONCLUSIONS Young adults growing up with chronic illness succeed socially, but are at increased risk of poorer educational and vocational outcomes. PMID:21783055

A Novel Quantitative Approach to Concept Analysis: The Internomological Network

PubMed Central

Cook, Paul F.; Larsen, Kai R.; Sakraida, Teresa J.; Pedro, Leli

2012-01-01

Background When a construct such as patients’ transition to self-management of chronic illness is studied by researchers across multiple disciplines, the meaning of key terms can become confused. This results from inherent problems in language where a term can have multiple meanings (polysemy) and different words can mean the same thing (synonymy). Objectives To test a novel quantitative method for clarifying the meaning of constructs by examining the similarity of published contexts in which they are used. Method Published terms related to the concept transition to self-management of chronic illness were analyzed using the internomological network (INN), a type of latent semantic analysis to calculate the mathematical relationships between constructs based on the contexts in which researchers use each term. This novel approach was tested by comparing results to those from concept analysis, a best-practice qualitative approach to clarifying meanings of terms. By comparing results of the two methods, the best synonyms of transition to self-management, as well as key antecedent, attribute, and consequence terms, were identified. Results Results from INN analysis were consistent with those from concept analysis. The potential synonyms self-management, transition, and adaptation had the greatest utility. Adaptation was the clearest overall synonym, but had lower cross-disciplinary use. The terms coping and readiness had more circumscribed meanings. The INN analysis confirmed key features of transition to self-management, and suggested related concepts not found by the previous review. Discussion The INN analysis is a promising novel methodology that allows researchers to quantify the semantic relationships between constructs. The method works across disciplinary boundaries, and may help to integrate the diverse literature on self-management of chronic illness. PMID:22592387

Medicaid programme changes and the chronically ill: early results from a prospective cohort study of the Oregon Health Plan.

PubMed

Solotaroff, Rachel; Devoe, Jennifer; Wright, Bill J; Smiths, Jeanene; Boone, Janne; Edlund, Tina; Carlson, Matthew J

2005-09-01

To describe the impacts of recent Oregon Health Plan (OHP) policy changes on individuals living with chronic illness in Oregon. A mail survey was conducted of 1374 OHP beneficiaries who were directly affected by the new policies. The analyses reported in this article represent baseline findings from the first of three survey waves in an ongoing prospective cohort study. A significant association was found between Medicaid policy changes and high rates of disenrolment from the OHP. Compared to the non-chronically ill, the chronically ill were more likely to report inability to pay for medications, higher medical debt, more unmet health needs, and poorer health status. Among the chronically ill, those who lost insurance reported decreased access to and utilization of healthcare, more medical debt, and more restriction of medications. As policy-makers restructure public programmes to accommodate tight budgets and rising healthcare costs, people with chronic illness can easily be overlooked. Chronically ill individuals face disproportionate financial and health burdens. Small cost-saving policy changes can lead to widespread disenrolment that cascades into reduced access to healthcare services, altered utilization patterns, and financial strain.

Co-occurring mental illness and health care utilization and expenditures in adults with obesity and chronic physical illness.

PubMed

Shen, Chan; Sambamoorthi, Usha; Rust, George

2008-06-01

The objectives of the study were to compare health care expenditures between adults with and without mental illness among individuals with obesity and chronic physical illness. We performed a cross-sectional analysis of 2440 adults (older than age 21) with obesity using a nationally representative survey of households, the Medical Expenditure Panel Survey. Chronic physical illness consisted of self-reported asthma, diabetes, heart disease, hypertension, or osteoarthritis. Mental illness included affective disorders; anxiety, somatoform, dissociative, personality disorders; and schizophrenia. Utilization and expenditures by type of service (total, inpatient, outpatient, emergency room, pharmacy, and other) were the dependent variables. Chi-square tests, logistic regression on likelihood of use, and ordinary least squares regression on logged expenditures among users were performed. All regressions controlled for gender, race/ethnicity, age, martial status, region, education, employment, poverty status, health insurance, smoking, and exercise. All analyses accounted for the complex design of the survey. We found that 25% of adults with obesity and physical illness had a mental illness. The average total expenditures for obese adults with physical illness and mental illness were $9897; average expenditures were $6584 for those with physical illness only. Mean pharmacy expenditures for obese adults with physical illness and mental illness and for those with physical illness only were $3343 and $1756, respectively. After controlling for all independent variables, among adults with obesity and physical illness, those with mental illness were more likely to use emergency services and had higher total, outpatient, and pharmaceutical expenditures than those without mental illness. Among individuals with obesity and chronic physical illness, expenditures increased when mental illness is added. Our study findings suggest cost-savings efforts should examine the reasons for high utilization and expenditures for those with obesity, chronic physical illness, and mental illness.

Employment Barriers Among Welfare Recipients and Applicants With Chronically Ill Children

PubMed Central

Smith, Lauren A.; Romero, Diana; Wood, Pamela R.; Wampler, Nina S.; Chavkin, Wendy; Wise, Paul H.

2002-01-01

Objectives. This study evaluated the association of chronic child illness with parental employment among individuals who have had contact with the welfare system. Methods. Parents of children with chronic illnesses were interviewed. Results. Current and former welfare recipients and welfare applicants were more likely than those with no contact with the welfare system to report that their children’s illnesses adversely affected their employment. Logistic regression analyses showed that current and former receipt of welfare, pending welfare application, and high rates of child health care use were predictors of unemployment. Conclusions. Welfare recipients and applicants with chronically ill children face substantial barriers to employment, including high child health care use rates and missed work. The welfare reform reauthorization scheduled to occur later in 2002 should address the implications of chronic child illness for parental employment. PMID:12197972

Parent Preferences for Shared Decision-making in Acute Versus Chronic Illness.

PubMed

Tom, Dina M; Aquino, Christian; Arredondo, Anthony R; Foster, Byron A

2017-10-01

The goal of this study was to examine preferences for shared decision-making (SDM) in parents of acutely ill versus chronically ill children in the inpatient setting. Additionally, we explored the effect of parental perception of illness severity and uncertainty in illness on decision-making preference. In this cross-sectional study, we surveyed parents of children admitted to pediatric inpatient units at an academic, tertiary-care hospital. Surveys were administered in person and used validated tools to assess SDM preferences and uncertainty in illness. Descriptive statistics evaluated associations stratified by acute versus chronic illness, and multivariable analyses were performed. Of the 200 parents who participated, the majority were women (78%), Hispanic (81.5%), English speaking (73%), between 30 and 39 years old (37.5%), and had an education achievement of less than a college degree (77%). The mean age of hospitalized children was 8.1 years, and half reported a chronic illness. Most parents preferred an active (43%) or collaborative (40%) role in SDM. There was no association with SDM preference by demographics, number of previous hospitalizations, perception of illness severity, or uncertainty. However, parents of chronically ill children significantly preferred a passive role in SDM when they perceived a high level of uncertainty in illness. Most parents of hospitalized children prefer to take an active or collaborative role in SDM. However, parents of chronically ill children who perceive high levels of uncertainty surrounding their children's illness prefer a passive role, thus illustrating the complexity in decision-making among this parent population. Copyright © 2017 by the American Academy of Pediatrics.

A qualitative study examining health literacy and chronic illness self-management in Hispanic and non-Hispanic older adults

PubMed Central

Jacobs, Robin J; Ownby, Raymond L; Acevedo, Amarilis; Waldrop-Valverde, Drenna

2017-01-01

Purpose Chronic illness and low levels of health literacy affect health outcomes for many individuals, particularly older adults and racial/ethnic minorities. This study sought to understand the knowledge, strengths, and areas of need regarding self-management of chronic illness in order to lay the groundwork for content development of an intervention to increase health literacy and maximize patient engagement in chronic disease self-care. Patients and methods In-depth, qualitative interviews were conducted in Spanish and English with 25 older adults with various chronic illnesses. Topics included knowledge and understanding of chronic conditions, medications, and disease self-management skills. Qualitative data were coded by searching text and conducting cross-case analysis. An inductive analysis was then employed to allow for the patterns and themes to emerge. Results Emerged themes included 1) social support, 2) coping strategies, 3) spirituality, 4) chronic disease health literacy, 5) anger, and 6) depression. While participants had a general overall knowledge of chronic illness, they had deficits in knowledge regarding their own illnesses and medications. Conclusion Chronic illness self-management is a complex and dynamic behavioral process. This study identified themes that leverage patient motivation to engage in self-care in a personalized manner. This information will guide the development of an intervention to promote health literacy and optimal disease self-management. PMID:28461754

Perceived Stress in Chronic Illness: A Comparative Analysis of Four Diseases.

ERIC Educational Resources Information Center

Revenson, Tracey A.; Felton, Barbara J.

Most studies of stress and coping processes among patients with serious illnesses have focused on acute illness states. Far less research has involved systematic examination of the types and frequency of illness-related stresses experienced by individuals living with chronic illness. To compare the nature and degree of illness-related stress posed…

Living with a chronic illness - reaching out to others

MedlinePlus

... ency/patientinstructions/000602.htm Living with a chronic illness - reaching out to others To use the sharing ... illness. Talk with People Who Have the Same Illness Sharing with and learning from people who have ...

A Tool for Tracking and Assessing Chronic Illness Care in Prison (ACIC-P)

PubMed Central

Wang, Emily A.; Aminawung, Jenerius A.; Ferguson, Warren; Trestman, Robert; Wagner, Edward H.; Bova, Carol

2014-01-01

Chronic disease care is being transformed in correctional settings, given an aging inmate population, ongoing quality improvement efforts, litigation, and rising costs. The Chronic Care Model, established for chronic disease care in the community, might be a suitable framework to transform chronic disease care in prison, but it has not been systematically adapted for the correctional health care setting. We employed cognitive interviewing to adapt an extant survey used to measure the delivery of chronic illness care in the community, Assessment of Chronic Illness Care, for a prison setting. Results from the cognitive interviews and the modified Assessment of Chronic Illness Care–Prison (ACIC-P) instrument are presented in this article. Future studies will need to test the reliability and psychometric properties of the adapted ACIC-P. PMID:25117427

Strategies for Coping in a Complex World: Adherence Behavior Among Older Adults with Chronic Illness

PubMed Central

Ross-Degnan, Dennis; Adams, Alyce S.; Safran, Dana Gelb; Soumerai, Stephen B.

2007-01-01

Background Increasing numbers of medicines increase nonadherence. Little is known about how older adults manage multiple medicines for multiple illnesses. Objectives To explore how older adults with multiple illnesses make choices about medicines. Design Semistructured interviews with older adults taking several medications. Accounts of respondents’ medicine-taking behavior were collected. Participants Twenty community-dwelling seniors with health insurance, in Eastern Massachusetts, aged 67–90, (4–12 medicines, 3–9 comorbidities). Approach Qualitative analysis using constant comparison to explain real choices made about medicines in the past (“historical”) and hypothetical (“future”) choices. Results Respondents reported both past (“historical”) choices and hypothetical (“future”) choices between medicines. Although people discussed effectiveness and future risk of the disease when prompted to prioritize their medicines (future choices), key factors leading to nonadherence (historical choices) were costs and side effects. Specific choices were generally dominated by 1 factor, and respondents rarely reported making explicit trade-offs between different factors. Factors affecting 1 choice were not necessarily the same as those affecting another choice in the same person. There was no evidence of “adherent” personalities. Conclusion Prescribing a new medicine, a change in provider or copayment can provoke new choices about both new and existing medications in older adults with multiple morbidities. PMID:17406952

The role of hospitals in bridging the care continuum: a systematic review of coordination of care and follow-up for adults with chronic conditions.

PubMed

De Regge, Melissa; De Pourcq, Kaat; Meijboom, Bert; Trybou, Jeroen; Mortier, Eric; Eeckloo, Kristof

2017-08-09

Multiple studies have investigated the outcome of integrated care programs for chronically ill patients. However, few studies have addressed the specific role hospitals can play in the downstream collaboration for chronic disease management. Our objective here is to provide a comprehensive overview of the role of the hospitals by synthesizing the advantages and disadvantages of hospital interference in the chronic discourse for chronically ill patients found in published empirical studies. Systematic literature review. Two reviewers independently investigated relevant studies using a standardized search strategy. Thirty-two articles were included in the systematic review. Overall, the quality of the included studies is high. Four important themes were identified: the impact of transitional care interventions initiated from the hospital's side, the role of specialized care settings, the comparison of inpatient and outpatient care, and the effect of chronic care coordination on the experience of patients. Our results show that hospitals can play an important role in transitional care interventions and the coordination of chronic care with better outcomes for the patients by taking a leading role in integrated care programs. Above that, the patient experiences are positively influenced by the coordinating role of a specialist. Specialized care settings, as components of the hospital, facilitate the coordination of the care processes. In the future, specialized care centers and primary care could play a more extensive role in care for chronic patients by collaborating.

Adaptation and validation of the patient assessment of chronic illness care in the French context.

PubMed

Krucien, Nicolas; Le Vaillant, Marc; Pelletier-Fleury, Nathalie

2014-06-19

Chronic diseases are major causes of disability worldwide with rising prevalence. Most patients suffering from chronic conditions do not always receive optimal care. The Chronic Care Model (CCM) has been developed to help general practitioners making quality improvements. The Patient Assessment of Chronic Illness Care (PACIC) questionnaire was increasingly used in several countries to appraise the implementation of the CCM from the patients' perspective. The objective of this study was to adapt the PACIC questionnaire in the French context and to test the validity of this adaptation in a sample of patients with multiple chronic conditions. The PACIC was translated into French language using a forward/backward procedure. The French version was validated using a sample of 150 patients treated for obstructive sleep apnea syndrome (OSAS) and having multiple chronic co-morbidities. Several forms of validity were analysed: content; face; construct; and internal consistency. The construct validity was investigated with an exploratory factorial analysis. The French-version of the PACIC consisted in 18 items, after merging two pairs of items due to redundancy. The high number of items exhibiting floor/ceiling effects and the non-normality of the ratings suggested that a 5-points rating scale was somewhat inappropriate to assess the patients' experience of care. The construct validity of the French-PACIC was verified and resulted in a bi-dimensional structure. Overall this structure showed a high level of internal consistency. The PACIC score appeared to be significantly related to the age and self-reported health of the patients. A French-version of the PACIC questionnaire is now available to evaluate the patients' experience of care and to monitor the quality improvements realised by the medical structures. This study also pointed out some methodological issues about the PACIC questionnaire, related to the format of the rating scale and to the structure of the questionnaire.

Responding to Students' Chronic Illnesses

ERIC Educational Resources Information Center

Shaw, Steven R.; Glaser, Sarah E.; Stern, Melissa; Sferdenschi, Corina; McCabe, Paul C.

2010-01-01

Chronic illnesses are long-term or permanent medical conditions that have recurring effects on everyday life. Large and growing number of students have chronic illnesses that affect their emotional development, physical development, academic performance, and family interactions. The primary error in educating those students is assuming that the…

Normalization behaviours of rural fathers living with chronically-ill children: an Australian experience.

PubMed

Peck, Blake; Lillibridge, Jennifer

2005-03-01

This article reports findings from a larger qualitative study conducted to gain insight into the experience of fathers living with their chronically-ill children in rural Victoria, Australia. Data were collected via unstructured interviews with four fathers. The findings presented in this article explore the phenomena of normalization for fathers within the chronic illness experience. Fathers described normalizing the experience of living with their chronically-ill child as involving a combination of various coping strategies and behaviours including: (1) accepting the child's condition, (2) changing expectations, (3) focusing energies on a day-to-day basis, (4) minimizing knowledge-seeking behaviours, and (5) engaging in external distraction activities. Findings highlight the complex and unique normalization strategies these men utilized and contribute to knowledge and understanding of the complex nature of raising a chronically-ill child in rural Australia and provide a sound basis upon which to guide an ongoing and holistic assessment of fathers with chronically-ill children.

Psychological predictors for health-related quality of life and disability in persons with chronic obstructive pulmonary disease (COPD).

PubMed

Mewes, Ricarda; Rief, Winfried; Kenn, Klaus; Ried, Jens; Stenzel, Nikola

2016-01-01

Individuals with chronic obstructive pulmonary disease (COPD) exhibit low physical and mental health-related quality of life (HRQL) and high susceptibility to disability. We investigated the influence of psychological factors on HRQL and disability in COPD individuals recruited from the general population. In line with Leventhal's common sense model, we expected psychological factors to be associated with HRQL and disability even after controlling for medical status. Individuals with COPD (n = 502; 59.7 years old; GOLD grades were I: 3%, II: 17%, III: 34%, IV: 46%) were assessed through an online survey administered via COPD patient organisations in Germany. Individuals filled in the Short Form Health Survey (SF-12), COPD Assessment Test, Patient Health Questionnaire (modules: GAD-2, PHQ-15, PHQ-9), Brief Illness Perception Questionnaire, a questionnaire that assesses causal illness attributions, and the internal illness-related locus of control scale of the 'KKG questionnaire for the assessment of control beliefs about illness and health'. Multiple linear regressions were calculated. The investigated factors explained high variances (disability = 56%, physical HRQL = 28%, mental HRQL = 63%, p ≤ .001). Better mental health, more optimistic illness perceptions, attribution to psychological causes, and stronger internal locus of control were associated with lower disability and better HRQL. Comorbid somatic symptoms contributed to high disability and low quality of life. Psychological factors, such as illness perception, attribution and internal locus of control, were associated with disability and HRQL. These factors should be considered when designing treatments for individuals with COPD, and adequate interventions should be provided to enhance illness understanding and self-management skills.

Chronic physical conditions in older adults with mental illness and/ or substance use disorders.

PubMed

Lin, Wen-Chieh; Zhang, Jianying; Leung, Gary Y; Clark, Robin E

2011-10-01

To examine the association between mental illness and chronic physical conditions in older adults and investigate whether co-occurring substance use disorders (SUDs) are associated with greater risk of chronic physical conditions beyond mental illness alone. A retrospective cross-sectional study. Medicare and Medicaid programs in Massachusetts. Massachusetts Medicare and Medicaid members aged 65 and older as of January 1, 2005 (N = 679,182). Diagnoses recorded on Medicare and Medicaid claims were used to identify mental illness, SUDs, and 15 selected chronic physical conditions. Community-dwelling older adults with mental illness or SUDs had higher adjusted risk for 14 of the 15 selected chronic physical conditions than those without these disorders; the only exception was eye diseases. Moreover, those with co-occurring SUDs and mental illness had the highest adjusted risk for 11 of these chronic conditions. For residents of long-term care facilities, mental illness and SUDs were only moderately associated with the risk of chronic physical conditions. Community-dwelling older adults with mental illness or SUDs, particularly when they co-occurred, had substantially greater medical comorbidity than those without these disorders. For residents of long-term care facilities, the generally uniformly high medical comorbidity may have moderated this relationship, although their high prevalence of mental illness and SUDs signified greater healthcare needs. These findings strongly suggest the imminent need for integrating general medical care, mental health services, and addiction health services for older adults with mental illness or SUDs. © 2011, Copyright the Authors Journal compilation © 2011, The American Geriatrics Society.

Retrospective chart review of obesity and episodic and chronic illness among rural Mexican-American adolescents accessing rural health clinic services.

PubMed

Champion, Jane Dimmitt; Pierce, Sherrie; Collins, Jennifer L

2015-06-01

Obesity impacts the physical and psychological health of children and adolescents, and is a risk factor for development of episodic and chronic illness. Rural Mexican-American adolescents are at risk for obesity and associated chronic illnesses.The study used a retrospective chart review of data collected routinely in a rural health clinic setting from 1 January 2005 to 31 December 2010 to assess incidence of overweight/obesity status and episodic or chronic illness among Mexican-American adolescents aged 12-18 years. Analyses included body mass index, age, gender, and episodic or chronic illness diagnoses. Two hundred twelve charts were audited; women (n = 114, 53.8%), men (n = 98 46.2%); normal (n = 105, 49.5%), overweight/obese (n = 107, 50.5%). There were more female normal (n = 61, 53.5%) vs. overweight/obese (n = 53, 46.5%). More male overweight/obese (n = 54, 55.1%) than normal weight (n = 44, 44.9%). Age at first documented overweight/obesity status occurred in early adolescence (median = 13 years, mode = 12 years). Chronic illness incidence was higher among men than women, and overweight/obese vs. normal weight adolescents and in sub-categorizations by weight and specific illness. Incidence of episodic illness was higher among women than men, with variation by weight and specific illness. Disproportionately high incidence of episodic or chronic illness and overweight/obesity identified among rural Mexican-American adolescents compels intervention modification to improve effectiveness. © 2014 Wiley Publishing Asia Pty Ltd.

"My Child Is Not an Illness": Mothers as Advocates for Pedagogy and Policies for Chronically Ill Students

ERIC Educational Resources Information Center

Katzman, Lauren

2013-01-01

On a national level, there is no answer in the law about identifying and servicing chronically ill students. Because the national definitions and requirements are ambiguous, the local policies are also unclear. The purpose of this study was to analyze the stories told by mothers about their children who suffer from chronic illness in order to help…

Caregiver Experience During Patients’ Advanced Chronic Illness and Last Year of Life

PubMed Central

Sautter, Jessica M.; Tulsky, James A.; Johnson, Kimberly S.; Olsen, Maren K.; Burton-Chase, Allison M.; Lindquist, Jennifer Hoff; Zimmerman, Sheryl; Steinhauser, Karen E.

2014-01-01

Background/Objectives Caregivers of patients with serious illness endure significant burden, yet it is not clear at what stage of advanced illness patient and caregiver needs are greatest. This study compared prevalence and predictors of caregiver esteem and burden during two different stages of patients’ illnesses – advanced chronic illness and the last year of life. Design Longitudinal, observational cohort study. Setting Community sample recruited from outpatient clinics at Duke University and Durham VA Medical Centers. Participants Patients living with advanced cancer, congestive heart failure, or chronic obstructive pulmonary disease and their primary caregiver, retrospectively coded as chronic-illness (n=62) or end-of-life (n=62) patient-caregiver dyads. Measurements We measured caregiver experience monthly with the Caregiver Reaction Assessment (CRA), which includes caregiver esteem and 4 domains of burden: schedule, health, family, and finances. Results During both chronic-illness and end-of-life, high caregiver esteem was almost universal (95%); health, family, and financial burden were endorsed by <25% of the sample. Schedule burden was the most prevalent form of burden and was experienced more frequently by end-of-life caregivers (58%) than the chronic-illness caregivers (32%). Caregiver esteem and all dimensions of burden were relatively stable over one year. Few factors were associated with burden. Conclusion Caregiver experience is relatively stable over one year and similar among caregivers of patients in the last year of life and those further upstream in advanced illness. Schedule burden stands out as most prevalent and variable among dimensions of experience. Because prevalence of burden is not specific to stage of illness and is relatively stable over time, multidisciplinary healthcare teams should assess caregiver burden and refer burdened caregivers to supportive resources early in the course of chronic illness. PMID:24803020

Single parents of children with chronic illness: an understudied phenomenon.

PubMed

Brown, Ronald T; Wiener, Lori; Kupst, Mary Jo; Brennan, Tara; Behrman, Richard; Compas, Bruce E; David Elkin, T; Fairclough, Diane L; Friebert, Sarah; Katz, Ernest; Kazak, Anne E; Madan-Swain, Avi; Mansfield, Nancy; Mullins, Larry L; Noll, Robert; Patenaude, Andrea Farkas; Phipps, Sean; Sahler, O J; Sourkes, Barbara; Zeltzer, Lonnie

2008-05-01

To examine the chronic illness literature and evaluate the impact on single parenting and children and adolescents with chronic illness. We conducted literature reviews of relevant research pertaining to single-parent families on PubMed, Medline, and PsychINFO and also surveyed pertinent book chapters and all of the articles from the Journal of Pediatric Psychology since 1987 for articles, specifically examining the potential associations of single (lone) parenting versus two-parent households on children's psychosocial functioning and the impact of the child's illness on caregiver functioning. While the literature has examined and discussed the stressors associated with parenting a child with an illness, including the impact of illness on finances, family roles, and caregiver burden, few studies have examined single parents of children and adolescents with chronic illnesses and related stressors stemming from being a lone caregiver. There is a dearth of studies examining the association between lone parenting and psychosocial functioning among children and adolescents with chronic illnesses. Specific questions necessitating future investigation are summarized and recommendations are made for future research in this important area of inquiry.

Functional foods and the biomedicalisation of everyday life: a case of germinated brown rice.

PubMed

Kim, Hyomin

2013-07-01

Germinated brown rice (GBR) is a functional food, whose benefits for chronic diseases have been demonstrated by scientific research on a single constituent of GBR, gamma aminobutyric acid. This article examines the processes through which the emphasis on biomedical rationality made during the production and consumption of functional foods is embedded in the complicated social contexts of the post-1990s. In the case of GBR, the Korean government, food scientists, mass media and consumers have added cultural accounts to the biomedical understanding of foods. In particular, consumers have transformed their households and online communities into a place for surveillance medicine. Functional foods are embedded in multiple actors' perspectives on what healthy foods mean and how and where the risks of chronic diseases should be managed. © 2012 The Author. Sociology of Health & Illness © 2012 Foundation for the Sociology of Health & Illness/John Wiley & Sons Ltd.

A tool for tracking and assessing chronic illness care in prison (ACIC-P).

PubMed

Wang, Emily A; Aminawung, Jenerius A; Ferguson, Warren; Trestman, Robert; Wagner, Edward H; Bova, Carol

2014-10-01

Chronic disease care is being transformed in correctional settings, given an aging inmate population, ongoing quality improvement efforts, litigation, and rising costs. The Chronic Care Model, established for chronic disease care in the community, might be a suitable framework to transform chronic disease care in prison, but it has not been systematically adapted for the correctional health care setting. We employed cognitive interviewing to adapt an extant survey used to measure the delivery of chronic illness care in the community, Assessment of Chronic Illness Care, for a prison setting. Results from the cognitive interviews and the modified Assessment of Chronic Illness Care-Prison (ACIC-P) instrument are presented in this article. Future studies will need to test the reliability and psychometric properties of the adapted ACIC-P. © The Author(s) 2014.

Mapping chronic illness in the age of globalization: reclaiming the good for the chronically ill.

PubMed

del Pilar Camargo Plazas, Maria

2009-01-01

Until recently, infectious diseases were the main cause of death worldwide. New medical discoveries and the evolution of public health improved life expectancy and the ability to survive acute threats, thus changing the course of diseases from acute to chronic. Today, chronic illness is the most important health concern worldwide. Chronic illness increases existing poverty and pushes other people into it. As nurses, members of the healthcare system and members of this world, we cannot forget that our response toward globalization and chronic disease has to be centered in leadership through reorienting local and national healthcare systems. All actions must be grounded in the ethical treatment of the ill; we cannot close our eyes in hospitals or communities to what is happening now worldwide because our responsibility is to promote health, prevent disease, and care for human beings.

Collaborative Chronic Care Networks (C3Ns) to transform chronic illness care.

PubMed

Margolis, Peter A; Peterson, Laura E; Seid, Michael

2013-06-01

Despite significant gains by pediatric collaborative improvement networks, the overall US system of chronic illness care does not work well. A new paradigm is needed: a Collaborative Chronic Care Network (C3N). A C3N is a network-based production system that harnesses the collective intelligence of patients, clinicians, and researchers and distributes the production of knowledge, information, and know-how over large groups of people, dramatically accelerating the discovery process. A C3N is a platform of "operating systems" on which interconnected processes and interventions are designed, tested, and implemented. The social operating system is facilitated by community building, engaging all stakeholders and their expertise, and providing multiple ways to participate. Standard progress measures and a robust information technology infrastructure enable the technical operating system to reduce unwanted variation and adopt advances more rapidly. A structured approach to innovation design provides a scientific operating system or "laboratory" for what works and how to make it work. Data support testing and research on multiple levels: comparative effectiveness research for populations, evaluating care delivery processes at the care center level, and N-of-1 trials and other methods to select the best treatment of individual patient circumstances. Methods to reduce transactional costs to participate include a Federated IRB Model in which centers rely on a protocol approved at 1 central institutional review board and a "commons framework" for organizational copyright and intellectual property concerns. A fully realized C3N represents a discontinuous leap to a self-developing learning health system capable of producing a qualitatively different approach to improving health.

Caring for the Chronically Ill: A Vital Subject for Medical Education.

ERIC Educational Resources Information Center

Cohen, Andrew J.

1998-01-01

Patients with chronic illness account for three-fourths of United States' health-care expenditures, and considerable growth in these costs is likely as the population ages. However, management of chronic illness has received little attention in either undergraduate or graduate medical education. Competencies required to develop curricula in…

School Reentry for the Child with Chronic Illness.

ERIC Educational Resources Information Center

Sexson, Sandra B.; Madan-Swain, Avi

1993-01-01

This article focuses on the issues of reintegrating the chronically ill child into the school setting, the types of school problems encountered, the process of school reentry, (including a successful school reentry plan), and the implications for the school and the family of returning the chronically ill child to school. (DB)

Children Coping with Chronic Illness.

ERIC Educational Resources Information Center

Perez, Lissette M.

Children who live with chronic illness are confronted with challenges that frequently force them to cope in myriad ways. The ways in which children face chronic illness are summarized in this literature review. Also covered, are how the effects of family can influence coping strategies and how family members, especially parents, cope with their…

A Metasynthesis of Factors Affecting Self-Management of Chronic Illness

PubMed Central

SCHULMAN-GREEN, Dena; JASER, Sarah S.; PARK, Chorong; WHITTEMORE, Robin

2015-01-01

Aim To identify factors that may serve as facilitators and barriers to self-management described by adults living with chronic illness by conducting a qualitative metasynthesis. Background Self-management is an individuals’ active management of a chronic illness in collaboration with their family members and clinicians. Design Qualitative metasynthesis. Data Sources We analyzed studies (N=53) published between January 2000–May 2013 that described factors affecting self-management in chronic illness as reported by adults aged over 18 years with chronic illness. Review Methods Sandelowsi and Barroso approach to qualitative metasynthesis: literature search; quality appraisal; analysis; and synthesis of findings. Results Collectively, article authors reported on sixteen chronic illnesses, most commonly diabetes (N=28) and cardiovascular disease (N=20). Participants included men and women (mean age=57, range 18–94) from twenty countries representing diverse races and ethnicities. We identified five categories of factors affecting self-management: Personal/Lifestyle Characteristics; Health Status; Resources; Environmental Characteristics; and Health Care System. Factors may interact to affect self-management and may exist on a continuum of positive (facilitator) to negative (barrier). Conclusion Understanding factors that influence self-management may improve assessment of self-management among adults with chronic illness and may inform interventions tailored to meet individuals’ needs and improve health outcomes. PMID:26781649

Working as a doctor when chronically ill or disabled: comments made by doctors responding to UK surveys.

PubMed

Smith, Fay; Goldacre, Michael J; Lambert, Trevor W

2016-07-01

To report a qualitative study of themes doctors raised spontaneously, in a large-scale prospective cohort study covering many aspects of their medical careers, when referring to their own chronic illness or disability. Questionnaire survey. UK. Questionnaires were sent one, five and 10 years after graduation to 44,539 doctors who qualified between 1993 and 2012 in the UK: 38,613 questionnaires were returned and 11,859 respondents provided comments made by doctors about their training or work. The comments of 123 doctors about their own chronic illness or disability. Main themes raised included poor support for doctors with chronic illness or disability, delays in and changes to careers (either planned ahead or imposed), the impact of pressure at work, difficulties returning to work after illness, limitations on career choices and inadequate careers advice for doctors with chronic illness or disabilities. More needs to be done to ensure that doctors with chronic illness or disability receive appropriate support. Occupational health guidance should be monitored closely, with more support for ill doctors including adjustments to the job, help if needed with morale and mental health, and advice on career options. Further studies should establish the prevalence of long-term health conditions among doctors.

The importance of illness duration, age at diagnosis and the year of diagnosis for labour participation chances of people with chronic illness: results of a nationwide panel-study in The Netherlands.

PubMed

Rijken, Mieke; Spreeuwenberg, Peter; Schippers, Joop; Groenewegen, Peter P

2013-09-04

Compared to participation rates among general populations, participation of people with chronic illness in the labour market lags behind. This is undesirable, both from the perspective of individuals' well-being as from a macro-economic perspective for western countries where concerns exist about labour supply and sustainability of social security in the near future. To help develop successful policy measures to prevent early drop-out and support reintegration, we aimed to gain insight into the role of three age related characteristics that may relate to labour participation chances of people with chronic illness: the duration of their illness, how old they were when the chronic disease was diagnosed and the historical year in which the diagnosis was established. We analyzed data of one (first) measurement of several cohorts of people diagnosed with a somatic chronic disease, who (had) participated in the Dutch 'National Panel of people with Chronic illness or Disability' since 1998 (N = 4634 in total). Multi-level logistic regression analyses were conducted to estimate random effects of the age at diagnosis and the year of diagnosis and fixed effects of illness duration on labour participation, while correcting for the effects of socio-demographic and disease characteristics and socio-economic indicators. A significant part of the variation in labour participation among people with chronic illness relates to the age they had when they were diagnosed. Furthermore, a longer illness duration is significantly associated with a lower chance of being economically active. This is more the case for men than for women. Labour participation of cancer survivors depends on the phase of the illness they find themselves in. No evidence was found that the year in which the diagnosis was established matters for employment chances later in life. Age at diagnosis and illness duration relate to chronically ill people's chances to participate in the labour market, but how and how strong they relate to labour participation depend on gender and the type of chronic disease at stake. Prospective studies are needed to assess illness trajectories of specific diagnostic groups along with the development of their school and work careers.

The importance of illness duration, age at diagnosis and the year of diagnosis for labour participation chances of people with chronic illness: results of a nationwide panel-study in the Netherlands

PubMed Central

2013-01-01

Background Compared to participation rates among general populations, participation of people with chronic illness in the labour market lags behind. This is undesirable, both from the perspective of individuals’ well-being as from a macro-economic perspective for western countries where concerns exist about labour supply and sustainability of social security in the near future. To help develop successful policy measures to prevent early drop-out and support reintegration, we aimed to gain insight into the role of three age related characteristics that may relate to labour participation chances of people with chronic illness: the duration of their illness, how old they were when the chronic disease was diagnosed and the historical year in which the diagnosis was established. Methods We analyzed data of one (first) measurement of several cohorts of people diagnosed with a somatic chronic disease, who (had) participated in the Dutch ‘National Panel of people with Chronic illness or Disability’ since 1998 (N = 4634 in total). Multi-level logistic regression analyses were conducted to estimate random effects of the age at diagnosis and the year of diagnosis and fixed effects of illness duration on labour participation, while correcting for the effects of socio-demographic and disease characteristics and socio-economic indicators. Results A significant part of the variation in labour participation among people with chronic illness relates to the age they had when they were diagnosed. Furthermore, a longer illness duration is significantly associated with a lower chance of being economically active. This is more the case for men than for women. Labour participation of cancer survivors depends on the phase of the illness they find themselves in. No evidence was found that the year in which the diagnosis was established matters for employment chances later in life. Conclusion Age at diagnosis and illness duration relate to chronically ill people’s chances to participate in the labour market, but how and how strong they relate to labour participation depend on gender and the type of chronic disease at stake. Prospective studies are needed to assess illness trajectories of specific diagnostic groups along with the development of their school and work careers. PMID:24007362

Illness perceptions and coping with disease in chronic obstructive pulmonary disease: Effects on health-related quality of life.

PubMed

Vaske, Isabelle; Kenn, Klaus; Keil, Daniel C; Rief, Winfried; Stenzel, Nikola M

2017-10-01

This study investigated the effects of illness perceptions and coping with disease on health-related quality of life in chronic obstructive pulmonary disease. Therefore, participants ( N = 444) completed online questionnaires assessing illness severity (chronic obstructive pulmonary disease stage), Illness Perceptions Questionnaire, coping with disease (Essener Coping Questionnaire), and health-related quality of life (short form-12). Hierarchical regression and moderation analyses were conducted. The results showed that health-related quality of life was predicted by illness perceptions and several aspects of coping with disease. The association between illness perceptions and health-related quality of life was mediated by the corresponding coping with disease subscales. It is concluded that in order to prevent decreasing health-related quality of life in chronic obstructive pulmonary disease, treatment may be adjusted by promoting coping with disease and functional illness perceptions.

Complete mental health in adult siblings of those with a chronic illness or disability.

PubMed

Hallion, Madeleine; Taylor, Amanda; Roberts, Rachel

2018-02-01

Sibling relationships have lifelong significance and childhood chronic illness and disability can have considerable impacts on healthy siblings, influencing development into adulthood. Research has not yet assessed well-being in this population using measures of both mental health and mental illness. Thus, this study assessed well-being in a comprehensive manner using the complete mental health (CMH) model. Participants (N = 144) included both adult siblings of those with chronic illness or disability and adults with healthy siblings. Measures of positive social, psychological and emotional well-being were used to assess mental health and a measure of depression, anxiety, and stress was used to assess mental illness. A high proportion of participants, both with and without siblings with a chronic illness or disability, were experiencing symptoms of mental illness, accompanied by high wellbeing. This indicates that many participants fit into the struggling category of the CMH model. The present research highlights the need for early intervention services to ensure that siblings of those with a chronic illness or disability are well supported in developing strengths, as well as managing difficulties. Results also indicate that targeting students in mental health promotion is important to encourage participation in services. Implications for rehabilitation Siblings of those with a chronic illness or disability need to be included in assessments in order to understand the experience of the family unit. It is important for families and clinicians to be aware of the needs of healthy siblings and encourage them to interact with support services in order to maximise and maintain well-being. Skills-based support could be beneficial, particularly for providing caregivers with strategies to meet the needs of both their child with a chronic illness or disability and their healthy children.

Management of Human Immunodeficiency Virus Infection in Advanced Age

PubMed Central

Greene, Meredith; Justice, Amy C.; Lampiris, Harry W.; Valcour, Victor

2013-01-01

Importance Human immunodeficiency virus (HIV)-positive patients treated with antiretroviral therapy now have increased life expectancy and develop chronic illnesses that are often seen in older HIV-negative patients. Objective To address emerging issues related to aging with HIV. Screening older adults for HIV, diagnosis of concomitant diseases, management of multiple comorbid medical illnesses, social isolation, polypharmacy, and factors associated with end-of-life care are reviewed. Evidence Acquisition Published guidelines and consensus statements were reviewed. PubMed and PsycINFO were searched between January 2000 and February 2013. Articles not appearing in the search that were referenced by reviewed articles were also evaluated. Findings The population of older HIV-positive patients is rapidly expanding. It is estimated that by 2015 one-half of the individuals in the United States with HIV will be older than age 50. Older HIV-infected patients are prone to having similar chronic diseases as their HIV-negative counterparts, as well as illnesses associated with co-infections. Medical treatments associated with these conditions, when added to an antiretroviral regimen, increase risk for polypharmacy. Care of aging HIV-infected patients involves a need to balance a number of concurrent comorbid medical conditions. Conclusions and Relevance HIV is no longer a fatal disease. Management of multiple comorbid diseases is a common feature associated with longer life expectancy in HIV-positive patients. There is a need to better understand how to optimize the care of these patients. PMID:23549585

For patients with terminal chronic illness, does more face-to-face time with a healthcare provider decrease aggressive end-of-life (EOL) care such as ICU admission, feeding tube placement, CPR, or intubation?

PubMed Central

Seaberg, Preston; Hamm, Robert M.; McCarthy, Laine H.

2016-01-01

Clinical Question For patients with terminal chronic illness, does more face-to-face time with a healthcare provider decrease aggressive end-of-life (EOL) care such as ICU admission, feeding tube placement, CPR, or intubation? Answer Inconclusive. Existing evidence does not provide a conclusive answer to this particular question. While multiple prospective, randomized, controlled trials demonstrate an association between increased patient-provider contact time and decreased aggressive EOL care, interventions in those studies contain multiple confounding elements that preclude isolation of the time factor from the other elements in the interventions. There is a need for research focusing on physician-patient communication time and EOL care. Level of Evidence for the Answer A Search Terms Terminal care, palliative care, terminal illness, communication, patient-provider relations, time factors, life support care, resuscitation orders, enteral nutrition Inclusion Criteria Systematic reviews, meta-analyses, and comparative studies published between 2008 and the current date comparing EOL care or EOL care preferences of patients who spend more face-to-face time with a healthcare provider to those of patients who spend less face-to-face time with a healthcare provider. Exclusion Criteria Studies that do not report the primary outcome of interest (EOL care or EOL care preferences) or that do not measure discussion time or provide interventions that include face-to-face discussion. PMID:25796765

Do everyday problems of people with chronic illness interfere with their disease management?

PubMed

van Houtum, Lieke; Rijken, Mieke; Groenewegen, Peter

2015-10-01

Being chronically ill is a continuous process of balancing the demands of the illness and the demands of everyday life. Understanding how everyday life affects self-management might help to provide better professional support. However, little attention has been paid to the influence of everyday life on self-management. The purpose of this study is to examine to what extent problems in everyday life interfere with the self-management behaviour of people with chronic illness, i.e. their ability to manage their illness. To estimate the effects of having everyday problems on self-management, cross-sectional linear regression analyses with propensity score matching were conducted. Data was used from 1731 patients with chronic disease(s) who participated in a nationwide Dutch panel-study. One third of people with chronic illness encounter basic (e.g. financial, housing, employment) or social (e.g. partner, children, sexual or leisure) problems in their daily life. Younger people, people with poor health and people with physical limitations are more likely to have everyday problems. Experiencing basic problems is related to less active coping behaviour, while experiencing social problems is related to lower levels of symptom management and less active coping behaviour. The extent of everyday problems interfering with self-management of people with chronic illness depends on the type of everyday problems encountered, as well as on the type of self-management activities at stake. Healthcare providers should pay attention to the life context of people with chronic illness during consultations, as patients' ability to manage their illness is related to it.

Improving Communication About Serious Illness

ClinicalTrials.gov

2017-01-07

Critical Illness; Chronic Disease; Terminal Care; Palliative Care; Communication; Advance Care Planning; Neoplasm Metastasis; Lung Neoplasms; Pulmonary Disease, Chronic Obstructive; Heart Failure; End Stage Liver Disease; Kidney Failure, Chronic

Family Approaches to the Chronically Mentally Ill: Implications for Rural Areas.

ERIC Educational Resources Information Center

Kilpatrick, Allie C.; Kilpatrick, Ebb G.

The decade of the 1980s has witnessed a rebirth of concern regarding the chronically mentally ill. The way mental health professionals view families of the chronically mentally ill has changed dramatically, largely because of the emergence of the biological theories of causation for schizophrenia. Innovative programs for families have included…

78 FR 6404 - Agency Information Collection (Survey of Chronic Gastrointestinal Illness in Persian Gulf...

Federal Register 2010, 2011, 2012, 2013, 2014

2013-01-30

...: Approximately 25 percent military troops who were deployed in the first Persian Gulf War returned with... of Chronic Gastrointestinal Illness in Persian Gulf Veterans) Activities Under OMB Review AGENCY.... Survey of Chronic Gastrointestinal Illness in Persian Gulf Veterans, VA Form 10-21092a. b. VA Research...

Effects of Sudden vs. Chronic Illness Death on Bereavement Outcome.

ERIC Educational Resources Information Center

Sanders, Catherine M.

1982-01-01

Interviewed bereaved persons shortly after the death of a close family member and 18 months later. Respondents were grouped according to mode of death. The short-term chronic illness group made the most favorable adjustment. Sudden death and long-term chronic illness death groups sustained higher intensities of bereavement. (Author/RC)

Illness burden and physical outcomes associated with collaborative care in patients with comorbid depressive disorder in chronic medical conditions: A systematic review and meta-analysis.

PubMed

van Eck van der Sluijs, Jonna F; Castelijns, Hilde; Eijsbroek, Vera; Rijnders, Cees A Th; van Marwijk, Harm W J; van der Feltz-Cornelis, Christina M

Collaborative care (CC) improves depressive symptoms in people with comorbid depressive disorder in chronic medical conditions, but its effect on physical symptoms has not yet systematically been reviewed. This study aims to do so. Systematic review and meta-analysis was conducted using PubMed, the Cochrane Library, and the European and US Clinical Trial Registers. Eligible studies included randomized controlled trials (RCTs) of CC compared to care as usual (CAU), in primary care and general hospital setting, reporting on physical and depressive symptoms as outcomes. Overall treatment effects were estimated for illness burden, physical outcomes and depression, respectively. Twenty RCTs were included, with N=4774 patients. The overall effect size of CC versus CAU for illness burden was OR 1.64 (95%CI 1.47;1.83), d=0.27 (95%CI 0.21;0.33). Best physical outcomes in CC were found for hypertension with comorbiddepression. Overall, depression outcomes were better for CC than for CAU. Moderator analyses did not yield statistically significant differences. CC is more effective than CAU in terms of illness burden, physical outcomes and depression, in patients with comorbid depression in chronic medical conditions. More research covering multiple medical conditions is needed. The protocol for this systematic review and meta-analysis has been registered at the International Prospective Register of Systematic Reviews (PROSPERO) on February 19th 2016: http://www.crd.york.ac.uk/PROSPERO/DisplayPDF.php?ID=CRD42016035553. Copyright © 2017 Elsevier Inc. All rights reserved.

Women's self-management of chronic illnesses in the context of caregiving: a grounded theory study.

PubMed

Martinez-Marcos, Mercedes; De la Cuesta-Benjumea, Carmen

2015-06-01

Uncover how women self-manage their own chronic illness while taking care of a dependent relative. International policies place special emphasis in promoting interventions addressed to control, prevent and care for people with chronic health conditions. Self-management is a crucial part of this care. Caregivers are more prone to have chronic illness than non-caregivers. They are confronted with dilemmas about taking care of themselves while taking care of their dependent relative and the rest of their families. Caregivers articulate strategies to enable them to focus their energy on caring. Qualitative study using constructivist grounded theory. Thirty-nine women caregivers with a chronic illness participated in the study. Twenty-three semi-structured interviews and two focus groups were carried out between April 2010-December 2011. Data were analysed using grounded theory procedures. Self-management helps women caregivers with a chronic illness to balance the demands of their own illness and those of the dependent relative. They self-manage their illness by self-regulating the treatment, by regulating their strength and by controlling their emotions. Women caregivers integrate effectively and creatively the management of their chronic illnesses within the complexities of family care. This renders their health needs invisible and reaffirms them as capable caregivers. Identifying self-management strategies of women caregivers allow health professionals to acknowledge and reinforce effective self-care measures and to deter those that are ineffective and lessen their quality of life. © 2014 John Wiley & Sons Ltd.

Plasma granulocyte colony-stimulating factor and granulocyte-macrophage colony-stimulating factor levels in critical illness including sepsis and septic shock: relation to disease severity, multiple organ dysfunction, and mortality.

PubMed

Presneill, J J; Waring, P M; Layton, J E; Maher, D W; Cebon, J; Harley, N S; Wilson, J W; Cade, J F

2000-07-01

To define the circulating levels of granulocyte colony-stimulating factor (G-CSF) and granulocyte-macrophage colony-stimulating factor (GM-CSF) during critical illness and to determine their relationship to the severity of illness as measured by the Acute Physiology and Chronic Health Evaluation (APACHE) II score, the development of multiple organ dysfunction, or mortality. Prospective cohort study. University hospital intensive care unit. A total of 82 critically ill adult patients in four clinically defined groups, namely septic shock (n = 29), sepsis without shock (n = 17), shock without sepsis (n = 22), and nonseptic, nonshock controls (n = 14). None. During day 1 of septic shock, peak plasma levels of G-CSF, interleukin (IL)-6, and leukemia inhibitory factor (LIF), but not GM-CSF, were greater than in sepsis or shock alone (p < .001), and were correlated among themselves (rs = 0.44-0.77; p < .02) and with the APACHE II score (rs = 0.25-0.40; p = .03 to .18). G-CSF, IL-6, and UF, and sepsis, shock, septic shock, and APACHE II scores were strongly associated with organ dysfunction or 5-day mortality by univariate analysis. However, multiple logistic regression analysis showed that only septic shock remained significantly associated with organ dysfunction and only APACHE II scores and shock with 5-day mortality. Similarly, peak G-CSF, IL-6, and LIF were poorly predictive of 30-day mortality. Plasma levels of G-CSF, IL-6, and LIF are greatly elevated in critical illness, including septic shock, and are correlated with one another and with the severity of illness. However, they are not independently predictive of mortality, or the development of multiple organ dysfunction. GM-CSF was rarely elevated, suggesting different roles for G-CSF and GM-CSF in human septic shock.

Sickness absence management: encouraging attendance or 'risk-taking' presenteeism in employees with chronic illness?

PubMed

Munir, Fehmidah; Yarker, Joanna; Haslam, Cheryl

2008-01-01

To investigate the organizational perspectives on the effectiveness of their attendance management policies for chronically ill employees. A mixed-method approach was employed involving questionnaire survey with employees and in-depth interviews with key stakeholders of the organizational policies. Participants reported that attendance management polices and the point at which systems were triggered, posed problems for employees managing chronic illness. These systems presented risk to health: employees were more likely to turn up for work despite feeling unwell (presenteeism) to avoid a disciplinary situation but absence-related support was only provided once illness progressed to long-term sick leave. Attendance management polices also raised ethical concerns for 'forced' illness disclosure and immense pressures on line managers to manage attendance. Participants felt their current attendance management polices were unfavourable toward those managing a chronic illness. The policies heavily focused on attendance despite illness and on providing return to work support following long-term sick leave. Drawing on the results, the authors conclude that attendance management should promote job retention rather than merely prevent absence per se. They outline areas of improvement in the attendance management of employees with chronic illness.

Area variations in multiple morbidity using a life table methodology.

PubMed

Congdon, Peter

Analysis of healthy life expectancy is typically based on a binary distinction between health and ill-health. By contrast, this paper considers spatial modelling of disease free life expectancy taking account of the number of chronic conditions. Thus the analysis is based on population sub-groups with no disease, those with one disease only, and those with two or more diseases (multiple morbidity). Data on health status is accordingly modelled using a multinomial likelihood. The analysis uses data for 258 small areas in north London, and shows wide differences in the disease burden related to multiple morbidity. Strong associations between area socioeconomic deprivation and multiple morbidity are demonstrated, as well as strong spatial clustering.

How Clinicians Feel about Working with Spouses of the Chronically Ill.

PubMed

Ingram, Douglas H

2015-09-01

Clinicians who provide psychotherapy to spouses or partners of the chronically ill were solicited through listserves of psychodynamic and other organizations. The current report excluded those therapists working with spouses of dementia patients. Interviews were conducted with clinicians who responded. The interviews highlight the challenges commonly encountered by psychotherapeutic work with this cohort of therapy patients. A comparison is drawn that shows both overlap and distinctions between the experiences of those therapists engaging with spouses of chronically ill patients without a dementing process and those working with spouses of chronically ill patients who do suffer from a dementing process.

Extending the P4P agenda, part 2: how Medicare can reduce waste and improve the care of the chronically ill.

PubMed

Wennberg, John E; Fisher, Elliott S; Skinner, Jonathan S; Bronner, Kristen K

2007-01-01

The care of Americans with severe chronic illnesses is disorganized, unnecessarily costly, and undisciplined by sound clinical science. The federal government should invest in a crash program to improve the scientific basis of managing chronic illness, and the Centers for Medicare and Medicaid Services (CMS) should extend its pay-for-performance (P4P) agenda to ensure that within ten years all Americans with severe chronic illnesses have access to accountable health care organizations providing evidence-based prospective care. This paper recommends a strategy for achieving this goal.

Environmental Determinants of Chronic Disease and Medical Approaches: Recognition, Avoidance, Supportive Therapy, and Detoxification

PubMed Central

Sears, Margaret E.; Genuis, Stephen J.

2012-01-01

The World Health Organization warns that chronic, noncommunicable diseases are rapidly becoming epidemic worldwide. Escalating rates of neurocognitive, metabolic, autoimmune and cardiovascular diseases cannot be ascribed only to genetics, lifestyle, and nutrition; early life and ongoing exposures, and bioaccumulated toxicants may also cause chronic disease. Contributors to ill health are summarized from multiple perspectives—biological effects of classes of toxicants, mechanisms of toxicity, and a synthesis of toxic contributors to major diseases. Healthcare practitioners have wide-ranging roles in addressing environmental factors in policy and public health and clinical practice. Public health initiatives include risk recognition and chemical assessment then exposure reduction, remediation, monitoring, and avoidance. The complex web of disease and environmental contributors is amenable to some straightforward clinical approaches addressing multiple toxicants. Widely applicable strategies include nutrition and supplements to counter toxic effects and to support metabolism; as well as exercise and sweating, and possibly medication to enhance excretion. Addressing environmental health and contributors to chronic disease has broad implications for society, with large potential benefits from improved health and productivity. PMID:22315626

Self-reported coping behavior in health and disease: assessment with a card sort game

NASA Technical Reports Server (NTRS)

Schwartz, C. E.; Peng, C. K.; Lester, N.; Daltroy, L. H.; Goldberger, A. L.

1998-01-01

The authors tested the hypothesis that individuals with a variety of severe chronic illnesses and the healthy elderly exhibit a loss of flexibility in their response to a variety of stressors, compared with healthy adults. A card sort game designed to assess self-reported coping behavior under different stressful life situations was used to compare healthy adults with individuals with multiple sclerosis, rheumatoid arthritis, systemic lupus erythematosus, and the elderly. The healthy adults were found to exhibit more variability than any of the illness groups or the elderly. Healthy function is marked by a complex type of variability.

Effects of Parental Chronic Illness on Children's Psychosocial and Educational Functioning: A Literature Review

ERIC Educational Resources Information Center

Chen, Cliff Yung-Chi

2017-01-01

A good number of children grow up in households where a parent has been diagnosed with medical chronic illness. Parental chronic illness is stressful for children and adolescents and may have some potential impact on children's adjustment and functioning. Some emerging research conducted in the fields of medicine, nursing, and family studies has…

Psychosocial Experiences of Chronic Illness in Individuals with an Intellectual Disability: A Systematic Review of the Literature

ERIC Educational Resources Information Center

Flynn, Samantha; Hulbert-Williams, Nicholas; Hulbert-Williams, Lee; Bramwell, Ros

2015-01-01

Background: Increased life expectancy has led to an increase in diagnoses of chronic illness in people with an intellectual disability; despite this increase, research about the psychological impact is rare. This review explored the psychosocial experiences of chronic illness in adults with an intellectual disability, revealing potential…

Life after the Shock! The Impact on Families of Caring for Young Children with Chronic Illness

ERIC Educational Resources Information Center

Ashton, Jean

2004-01-01

The stresses experienced by most families include limitations on time, conditions of employment, financial burdens and sibling rivalry. For the families of a child with a chronic illness, these stresses are often compounded, making family functioning problematic. Chronic illness is marked by permanency and the need for ongoing vigilance with…

Outcomes of On-Line Financial Education for Chronically Ill Rural Women

ERIC Educational Resources Information Center

Haynes, Deborah C.; Haynes, George W.; Weinert, Clarann

2011-01-01

This research was part of a larger longitudinal study of chronically ill rural women to determine if computer technology could be effective in allowing the women to take control of their own well-being, including finances. The current study examined whether chronically ill rural women can effectively use on-line personal finance educational…

Chronic Illness & Mental Health

MedlinePlus

... chronic medical conditions have a higher risk of depression. The same factors that increase risk of depression ... a chronic or long-term illness. People with depression are at higher risk for other medical conditions. ...

"Everyone Was Really Happy to See Me!" The Importance of Friendships in the Return to School of Children with Chronic Illness

ERIC Educational Resources Information Center

Dockett, Sue

2004-01-01

One of the features of the Starting School Research Project (Perry, Dockett & Howard, 2000) has been the study of multiple experiences of the transition to school. An ecological model of transition highlights the significance of context and the ways in which context influences experiences and is influenced by the participants in these experiences.…

Neighbourly support of people with chronic illness; is it related to neighbourhood social capital?

PubMed

Waverijn, Geeke; Heijmans, Monique; Groenewegen, Peter P

2017-01-01

The neighbourhood may provide resources for health. It is to date unknown whether people who live in neighbourhoods with more social capital have more access to practical and emotional support by neighbours, or whether this is a resource only available to those who are personally connected to people in their neighbourhood. We investigated whether support by neighbours of people with chronic illness was related to neighbourhood social capital and to individual neighbourhood connections. Furthermore, we investigated whether support received from neighbours by people with chronic illness differed according to demographic and disease characteristics. We collected data on support by neighbours and individual connections to neighbours among 2272 people with chronic illness in 2015. Data on neighbourhood social capital were collected among 69,336 people in 3425 neighbourhoods between May 2011 and September 2012. Neighbourhood social capital was estimated with ecometric measurements. We conducted multilevel regression analyses. People with chronic illness were more likely to receive practical and emotional support from neighbours if they had more individual connections to people in their neighbourhood. People with chronic illness were not more likely to receive practical and emotional support from neighbours if they lived in a neighbourhood with more social capital. People with chronic illness with moderate physical disabilities or with comorbidity, and people with chronic illness who lived together with their partner or children, were more likely to receive support from neighbours. To gain more insight into the benefits of neighbourhood social capital, it is necessary to differentiate between the resources only accessible through individual connections to people in the neighbourhood and resources provided through social capital on the neighbourhood level. Copyright © 2016 Elsevier Ltd. All rights reserved.

Attitudes toward mental illness in adults by mental illness-related factors and chronic disease status: 2007 and 2009 Behavioral Risk Factor Surveillance System.

PubMed

Kobau, Rosemarie; Zack, Matthew M

2013-11-01

We examined how attitudes toward mental illness treatment and its course differ by serious psychological distress, mental illness treatment, chronic disease, and sociodemographic factors using representative state-based data. Using data from jurisdictions supporting the Behavioral Risk Factor Surveillance System's Mental Illness and Stigma Module (35 states, the District of Columbia, and Puerto Rico), we compared adjusted proportions of adults agreeing that "Treatment can help people with mental illness lead normal lives" (treatment effectiveness) and that "People are generally caring and sympathetic to people with mental illness" (supportive environment), by demographic characteristics, serious psychological distress, chronic disease status, and mental illness treatment. Attitudes regarding treatment effectiveness and a supportive environment for people with mental illness varied within and between groups. Most adults receiving mental illness treatment agreed that treatment is effective. Fewer adults with serious psychological distress than those without such distress agreed that treatment is effective. Fewer of those receiving treatment, those with psychological distress, and those with chronic disease perceived the environment as supportive. These data can be used to target interventions for population subgroups with less favorable attitudes and for surveillance.

Contributions of societal and geographical environments to "chronic Lyme disease": the psychopathogenesis and aporology of a new "medically unexplained symptoms" syndrome.

PubMed Central

Sigal, Leonard H; Hassett, Afton L

2002-01-01

Lyme disease is a relatively well-described infectious disease with multisystem manifestations. Because of confusion over conflicting reports, anxiety related to vulnerability to disease, and sensationalized and inaccurate lay media coverage, a new syndrome, "chronic Lyme disease," has become established. Chronic Lyme disease is the most recent in a continuing series of "medically unexplained symptoms" syndromes. These syndromes, such as fibromyalgia, chronic fatigue syndrome, and multiple chemical sensitivity, meet the need for a societally and morally acceptable explanation for ill-defined symptoms in the absence of objective physical and laboratory findings. We describe factors involved in the psychopathogenesis of chronic Lyme disease and focus on the confusion and insecurity these patients feel, which gives rise to an inability to adequately formulate and articulate their health concerns and to deal adequately with their medical needs, a state of disorganization termed aporia. PMID:12194894

Contributions of societal and geographical environments to "chronic Lyme disease": the psychopathogenesis and aporology of a new "medically unexplained symptoms" syndrome.

PubMed

Sigal, Leonard H; Hassett, Afton L

2002-08-01

Lyme disease is a relatively well-described infectious disease with multisystem manifestations. Because of confusion over conflicting reports, anxiety related to vulnerability to disease, and sensationalized and inaccurate lay media coverage, a new syndrome, "chronic Lyme disease," has become established. Chronic Lyme disease is the most recent in a continuing series of "medically unexplained symptoms" syndromes. These syndromes, such as fibromyalgia, chronic fatigue syndrome, and multiple chemical sensitivity, meet the need for a societally and morally acceptable explanation for ill-defined symptoms in the absence of objective physical and laboratory findings. We describe factors involved in the psychopathogenesis of chronic Lyme disease and focus on the confusion and insecurity these patients feel, which gives rise to an inability to adequately formulate and articulate their health concerns and to deal adequately with their medical needs, a state of disorganization termed aporia.

Consequences of caring for a child with a chronic disease: Employment and leisure time of parents.

PubMed

Hatzmann, Janneke; Peek, Niels; Heymans, Hugo; Maurice-Stam, Heleen; Grootenhuis, Martha

2014-12-01

Chronically ill children require several hours of additional care per day compared to healthy children. As parents provide most of this care, they have to incorporate it into their daily schedule, which implies a reduction in time for other activities. The study aimed to assess the effect of having a chronically ill child on parental employment and parental leisure activity time, and to explore the role of demographic, social, and disease-related variables in relation to employment and leisure activities. Outcomes of 576 parents of chronically ill children and 441 parents of healthy school children were analyzed with multivariate regression. Having a chronically ill child was negatively related with family employment, maternal labor force participation, and leisure activity time. Use of child care was positively related to family and maternal employment of the total group of parents. Within parents of chronically ill children, most important finding was the negative relation of dependency of the child on daily care and low parental educational level with family and maternal employment. In conclusion, parents of chronically ill children, mothers in particular, are disadvantaged in society probably due to the challenge of combining child care with work and leisure time. © The Author(s) 2013.

A center for self-management of chronic illnesses in diverse groups.

PubMed

Inouye, Jillian; Boland, Mary G; Nigg, Claudio R; Sullivan, Kathleen; Leake, Anne; Mark, Debra; Albright, Cheryl L

2011-01-01

Prevention and successful treatment of chronic disease require a scientific understanding of the impacts and interactions of ethnicity, culture, and illness on self-management interventions. This article presents one approach to developing effective methods to address the needs of ethnic minorities living with chronic illnesses. Described is the University of Hawaii Center for Ohana Self-Management of Chronic Illnesses (COSMCI) located in the School of Nursing & Dental Hygiene and funded by the National Institute of Nursing Research (Award Number P20NR010671). The interdisciplinary center focuses on family and community self-management interventions in ethnically diverse populations with chronic illnesses. Areas discussed are: 1) the operational structure for creating an environment conducive to interdisciplinary ohana self-management chronic illness research in ethnically diverse populations; and 2) the development of sustainable interdisciplinary, biobehavioral research capacity. The COSMCI uses a social cognitive theory framework to guide the application of established self-management interventions to Asian and Pacific Island populations (API) through three conceptually linked research projects on HIV infection, type 2 diabetes, and chronic obstructive pulmonary disease. COSMI addresses the feasibility of sharing of lessons learned among the approaches taken. The interdisciplinary nature of COSMCI increases the potential success of the intervention efforts. Hawaii Medical Journal Copyright 2010.

A Mobile App for Chronic Disease Self-Management: Protocol for a Randomized Controlled Trial.

PubMed

Ownby, Raymond L; Acevedo, Amarilis; Waldrop-Valverde, Drenna; Caballero, Joshua; Simonson, Michael; Davenport, Rosemary; Kondwani, Kofi; Jacobs, Robin J

2017-04-05

Health literacy is a critically important skill that helps people become active participants in their health care. Multiple studies in the United States and across the world have documented the association of health literacy with multiple health outcomes. In particular, the elderly and many members of minority groups have been shown to have low levels of health literacy; the same groups are disproportionately affected by chronic illnesses. These twin burdens affect the people most in need of the skills and knowledge required for coping with chronic illnesses. Chronic disease self-management (CDSM) is a logical target for a general health literacy intervention. In an approach that spans across specific diseases, CDSM targets problems and skills needed to cope with issues such as fatigue, pain, stress, depression, sleep disturbance, and treatment adherence. In a previous study, we showed that a computer-delivered tailored information intervention targeting health literacy could improve treatment and adherence and be cost effective, but it is not clear that this same strategy will be effective in persons with low health literacy and multiple chronic conditions. The purpose of this study is to develop a computer-delivered mobile intervention that will provide individuals with chronic conditions the necessary information to cope with their conditions. In this project, we will complete a qualitative study on the status and needs of individuals with more than one chronic condition. Results of this study will be used to develop a mobile tailored information app that will address self-management challenges in the areas of pain, sleep, fatigue, depression, anger, stress, memory problems, and treatment adherence. The impact of the intervention on patient quality of life, patient-provider relationships, health literacy, and patient activation will be assessed. We will also explore the extent to which health literacy mediates important outcomes, such as health-related quality of life and health service utilization. We are currently completing the preliminary qualitative and usability studies that will inform the content and design of the intervention. We anticipate that the intervention will be complete in 2017, and the clinical trial of its efficacy will also commence in 2017. Results will provide evidence on the usefulness of a mobile tailored information app for improving health literacy, patient activation, health-related quality of life, and self-reported health in patients with multiple chronic conditions. Clinicaltrials.gov NCT02922439; https://clinicaltrials.gov/ct2/show/NCT02922439 (Archived by WebCite at http://www.webcitation.org/6pTiqDAyN). ©Raymond L Ownby, Amarilis Acevedo, Drenna Waldrop-Valverde, Joshua Caballero, Michael Simonson, Rosemary Davenport, Kofi Kondwani, Robin J Jacobs. Originally published in JMIR Research Protocols (http://www.researchprotocols.org), 05.04.2017.

Chronic illness and Hmong shamans.

PubMed

Helsel, Deborah; Mochel, Marilyn; Bauer, Robert

2005-04-01

Among the challenges health care personnel in California's central valley face has been finding ways to help Hmong Americans manage chronic illness. Interviews were conducted with 11 Hmong shamans diagnosed with diabetes or hypertension and were qualitatively analyzed to ascertain respondents' understanding and management of their illnesses. Hmong shamans are influential individuals within their communities and are often the resource persons to whom patients turn for information on health. Understanding the shamans' perspective on chronic illness was seen as a gateway to understanding how the broader Hmong American community perceived these conditions. The concept of chronic illness was not well understood, resulting in sporadic medication and dietary regimens, limited awareness of potential complications, and a persistent impression that these illnesses could be cured rather than managed. Suggestions for patient educators include family and community involvement in care regimens and the use of descriptive terminology to identify the disease.

Sleep and Culture in Children with Medical Conditions

PubMed Central

Koinis-Mitchell, Daphne

2010-01-01

Objectives To provide an integrative review of the existing literature on the interrelationships among sleep, culture, and medical conditions in children. Methods A comprehensive literature search was conducted using PubMed, Medline, and PsychINFO computerized databases and bibliographies of relevant articles. Results Children with chronic illnesses experience more sleep problems than healthy children. Cultural beliefs and practices are likely to impact the sleep of children with chronic illnesses. Few studies have examined cultural factors affecting the relationship between sleep and illness, but existing evidence suggests the relationship between sleep and illness is exacerbated for diverse groups. Conclusions Sleep is of critical importance to children with chronic illnesses. Cultural factors can predispose children both to sleep problems and to certain medical conditions. Additional research is needed to address the limitations of the existing literature, and to develop culturally sensitive interventions to treat sleep problems in children with chronic illnesses. PMID:20332222

An Exploratory Study of the Relationship of Family Support and Coping with Adjustment: Implications for College Students with a Chronic Illness

ERIC Educational Resources Information Center

Wodka, Ericka L.; Barakat, Lamia P.

2007-01-01

To examine the role of family support and coping in the adjustment of adolescents with chronic illness (CI) transitioning into college, college freshmen and sophomores (N[subscript chronic illness] = 32, N[subscript primarily negative life event] = 53, N[subscript primarily positive life event] = 16) were administered standard measures. CI group…

Nutritional Needs of the Handicapped/Chronically Ill Child. Manual I: Nutrition Program Planning. Presentations from a National Interdisciplinary Symposium.

ERIC Educational Resources Information Center

Ekvall, Shirley M., Ed.; And Others

The following papers were delivered at a symposium on improving the nutritional status of a child who is chronically ill or handicapped: (1) "Planning Comprehensive Health Services for the Chronically Ill/Handicapped Child; (2) "Future National Directions in Maternal and Child Health"; (3) "Nutrition Services in a State Crippled Children's…

Reserve-building activities attenuate treatment burden in chronic illness: The mediating role of appraisal and social support

PubMed Central

Schwartz, Carolyn E; Zhang, Jie; Michael, Wesley; Eton, David T; Rapkin, Bruce D

2018-01-01

This study examines the importance of four psychosocial factors—personality, cognitive appraisal of quality of life, social support, and current reserve-building—in predicting treatment burden in chronically ill patients. Chronically ill patients (n = 446) completed web-based measures. Structural equation modeling was used to investigate psychosocial factors predicting treatment burden. Reserve-building activities indirectly reduced treatment burden by: (1) reducing health worries appraisals, (2) reducing financial difficulties, (3) increasing calm and peaceful appraisals, and (4) increasing perceived social support. These findings point to key behaviors that chronically ill people can use to attenuate their treatment burden. PMID:29785278

Tools to assess living with a chronic illness: A systematic review.

PubMed

Ambrosio, Leire; Portillo, Mari Carmen

2018-05-16

To analyse the currently available instruments to assess living with a chronic illness and related aspects. A review of the evidence was made using the databases: Medline, CINHAL, PsycINFO, Cochrane Library, Embase and Cuiden. The criteria that limited the search were: the language, English and / or Spanish and studies carried out in an adult population. Years of article publication were not used as a limit. A total of 16 instruments were identified and analysed that apparently measured the concept of living with a chronic illness and/or related aspects. According to the name of the instrument, four seemed to evaluate the concept of living with a chronic illness while the rest of the instruments evaluated aspects intrinsically related to the concept of "living with", such as attributes or the meaning of living with a chronic illness. Different instruments were identified to evaluate daily living for the chronically ill patient, as well as related aspects. According to this review, further validation studies are required in other populations and/or contexts in order to achieve valid and reliable instruments that could be used in clinical practice. Copyright © 2018 Elsevier España, S.L.U. All rights reserved.

The interaction of fatigue, physical activity, and health-related quality of life in adults with multiple sclerosis (MS) and cardiovascular disease (CVD).

PubMed

Newland, Pamela K; Lunsford, Valerie; Flach, Alicia

2017-02-01

In addition to the underlying health problems and disability associated with multiple sclerosis (MS) and cardiovascular disease (CVD), adults with each of these chronic illnesses are independently known to experience fatigue. While fatigue's influence on physical activity and health related quality of life (HRQOL) with each of these illnesses has been discussed, what is lacking is information on how fatigue impacts physical activity and health related quality of life, and ultimately self-management for adults with these conditions. Additionally, individuals may be unaware of the significance of maintaining optimal physical activity in order to maintain everyday function and self-management. Thus, the purpose of this article is to discuss the complex effect of fatigue on physical activity and HRQOL among adults with MS and CVD, and to present potential self-management strategies. Copyright © 2016 Elsevier Inc. All rights reserved.

Quick screening tool for patients with severe negative emotional reactions to chronic illness: psychometric study of the negative emotions due to chronic illness screening test (NECIS).

PubMed

Huang, Yun-Hsin; Wu, Chih-Hsun; Chen, Hsiu-Jung; Cheng, Yih-Ru; Hung, Fu-Chien; Leung, Kai-Kuan; Lue, Bee-Horng; Chen, Ching-Yu; Chiu, Tai-Yuan; Wu, Yin-Chang

2018-01-16

Severe negative emotional reactions to chronic illness are maladaptive to patients and they need to be addressed in a primary care setting. The psychometric properties of a quick screening tool-the Negative Emotions due to Chronic Illness Screening Test (NECIS)-for general emotional problems among patients with chronic illness being treated in a primary care setting was investigated. Three studies including 375 of patients with chronic illness were used to assess and analyze internal consistency, test-retest reliability, criterion-related validity, a cut-off point for distinguishing maladaptive emotions and clinical application validity of NECIS. Self-report questionnaires were used. Internal consistency (Cronbach's α) ranged from 0.78 to 0.82, and the test-retest reliability was 0.71 (P < 0.001). Criterion-related validity was 0.51 (P < 0.001). Based on the 'severe maladaptation' and 'moderate maladaptation' groups defined by using the 'Worsening due to Chronic Illness' index as the analysis reference, the receiver-operating characteristic curve analysis revealed an area under the curve of 0.81 and 0.82 (ps < 0.001), and a cut-off point of 19/20 was the most satisfactory for distinguishing those with overly negative emotions, with a sensitivity and specificity of 83.3 and 69.0%, and 68.5 and 83.0%, respectively. The clinical application validity analysis revealed that low NECIS group showed significantly better adaptation to chronic illness on the scales of subjective health, general satisfaction with life, self-efficacy of self-care for disease, illness perception and stressors in everyday life. The NECIS has satisfactory psychometric properties for use in the primary care setting. © The Author 2017. Published by Oxford University Press. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

Individual care plans for chronically ill patients within primary care in the Netherlands: Dissemination and associations with patient characteristics and patient-perceived quality of care.

PubMed

Jansen, Daphne L; Heijmans, Monique; Rijken, Mieke

2015-06-01

To examine the use of individual care plans (ICPs) within primary chronic illness care in the Netherlands, and to explore the relationships between ICP use, patient characteristics, and patient-perceived quality of care. Cross-sectional study using survey data from a panel of chronically ill patients and medical registration data provided by their general practices. A sample of 1377 patients with somatic chronic disease(s) randomly selected in general practices throughout the Netherlands, supplemented with a sample of 225 COPD patients, also recruited from general practices. (i) Percentage of ICP use based on self-report by chronically ill patients, and (ii) patient-perceived quality of care as assessed using the Patient Assessment of Chronic Illness Care (PACIC). ICP use among the total generic sample was low (9%), but slightly higher (13%) among patients diagnosed with diabetes or COPD, diseases for which disease management programmes have been set up in the Netherlands. Patients with a low educational level and patients with poor(er) self-rated health were more likely to have an ICP. Compared with patients without an ICP, patients with an ICP more often reported that the care they received was patient-centred, proactive, planned, and included collaborative goal setting, problem-solving, and follow-up support. Findings reveal a discrepancy between practice and policy aspirations regarding ICP use in primary chronic illness care. More research is needed to gain insight into the effectiveness of ICPs to improve the quality of chronic illness care in various patient populations.

A meta-ethnographic synthesis on phenomenographic studies of patients’ experiences of chronic illness

PubMed Central

Röing, Marta

2015-01-01

Phenomenography is a qualitative research approach developed within an educational framework, focusing on the qualitative experience of learning. It is also being used, to a lesser degree, in healthcare research. In the present study, we conducted a meta-ethnographic synthesis of phenomenographic studies on chronic illness, in order to give a broader perspective of how chronic illness can be experienced. Our aim was not to describe patients’ various individual experiences of illness, but instead to identify the different ways chronic illness can be experienced by patients. Our synthesis and phenomenographic interpretation of 12 selected articles found that patients’ experiences of chronic illness can be described in terms of a different lived body, a struggle with threat to identity and self-esteem, a diminished lifeworld, and a challenging reality. These experiences relate to each other in a process of recurring loops, where the different ways of experiencing continue to influence each other over time. According to these findings, the use of phenomenography as a research approach has the potential to add to the understanding of how chronic illness can be experienced. Patients may benefit from seeing that their illness can be experienced in many different ways and that it has many aspects, which then can lead to a better understanding and coping with their illness. We suggest that it may be worthwhile to expand the scope of phenomenography outside pedagogics. This presupposes a revision of the application to include a wider and more comprehensive description, for instance, of the different ways illness and healthcare phenomena can be experienced, and how these different ways are related to each other, with less focus on hierarchical relations. PMID:25690674

Co-occurrence of mental and physical illness in U.S. Latinos

PubMed Central

Feldman, Jonathan M.; Canino, Glorisa; Steinman, Kenneth; Alegría, Margarita

2009-01-01

Background This study describes the prevalence of comorbid physical and mental health problems in a national sample of U.S. Latinos. We examined the co-occurrence of anxiety and depression with prevalent physical chronic illnesses in a representative sample of Latinos with national origins from Mexico, Cuba, Puerto Rico, and other Latin American countries. Method We used data on 2,554 Latinos (75.5% response rate) ages 18 years and older from the National Latino and Asian American Study (NLAAS). The NLAAS was based on a stratified area probability sample design, and the sample came from the 50 states and Washington, DC. Survey questionnaires were delivered both in person and over the telephone in multiple languages, including Spanish and English. Psychiatric disorders were assessed using the World Mental Health Survey Initiative version of the World Health Organization Composite International Diagnostic Interview (WMH-CIDI). Physical chronic illness was assessed by self-reported history. Results Puerto Ricans had the highest prevalence of meeting criteria for any comorbid psychiatric disorder (more than one disorder). Puerto Ricans had the highest prevalence (22%) of subject-reported asthma history, while Cubans had the highest prevalence (33%) of cardiovascular disease. After accounting for age, sex, household income, number of years in the U.S., immigrant status, and comorbid anxiety and depression, anxiety was associated with diabetes and cardiovascular disease, in the entire sample. Depression and comorbid anxiety and depression were associated with asthma but not with other physical diseases, in the entire sample. The relationship between chronic physical and mental illness was not confounded by immigration status or number of years in the U.S. Discussion Despite previous findings that link acculturation with both chronic physical and mental illness, this study does not find that number of years in the US nor nativity explain the prevalence of psychiatric-medical comorbidities. This study demonstrates the importance of considering psychiatric and medical comorbidity among specific ethnic groups, as different patterns emerge than when using aggregate ethnic measures. Research is needed on both the pathways and the mechanisms of comorbidity for the specific Latino groups. PMID:17013767

Care for chronic illness in Australian general practice – focus groups of chronic disease self-help groups over 10 years: implications for chronic care systems reforms

PubMed Central

Martin, Carmel M; Peterson, Chris; Robinson, Rowena; Sturmberg, Joachim P

2009-01-01

Background Chronic disease is a major global challenge. However, chronic illness and its care, when intruding into everyday life, has received less attention in Asia Pacific countries, including Australia, who are in the process of transitioning to chronic disease orientated health systems. Aim The study aims to examine experiences of chronic illness before and after the introduction of Australian Medicare incentives for longer consultations and structured health assessments in general practice. Methods Self-help groups around the conditions of diabetes, epilepsy, asthma and cancer identified key informants to participate in 4 disease specific focus groups. Audio taped transcripts of the focus groups were coded using grounded theory methodology. Key themes and lesser themes identified using a process of saturation until the study questions on needs and experiences of care were addressed. Thematic comparisons were made across the 2002/3 and 1992/3 focus groups. Findings At times of chronic illness, there was need to find and then ensure access to 'the right GP'. The 'right GP or specialist' committed to an in-depth relationship of trust, personal rapport and understanding together with clinical and therapeutic competence. The 'right GP', the main specialist, the community nurse and the pharmacist were key providers, whose success depended on interprofessional communication. The need to trust and rely on care providers was balanced by the need for self-efficacy 'to be in control of disease and treatment' and 'to be your own case manager'. Changes in Medicare appeared to have little penetration into everyday perceptions of chronic illness burden or time and quality of GP care. Inequity of health system support for different disease groupings emerged. Diabetes, asthma and certain cancers, like breast cancer, had greater support, despite common experiences of disease burden, and a need for research and support programs. Conclusion Core themes around chronic illness experience and care needs remained consistent over the 10 year period. Reforms did not appear to alleviate the burden of chronic illness across disease groups, yet some were more privileged than others. Thus in the future, chronic care reforms should build from greater understanding of the needs of people with chronic illness. PMID:19161636

Paradise regained: how elderly people who are chronically mentally ill reinvent a social self.

PubMed

van Dongen, E

2001-01-01

Throughout their lives, chronic mentally ill people go through a series of disruptive events and periods of suffering. In general, the literature suggests that people with long-standing mental illnesses are extremely vulnerable and cannot maintain themselves without assistance. When old age is added to this mix, the result is a heavy burden for both the patient and the caregiver. While the negative consequences, for both patient and caregiver, of suffering chronic illness during old age must not be ignored, neither should the positive periods in these people's lives. There are times when the mutual identification between cold and young yields vivid examples of the latter's ability to reconstitute a social self. In this paper I look at chronic illness in old age as a struggle on the part of the sufferer to reconcile her/his experiences of suffering in the light of approaching death. I attempt to show that the process of aging with a chronic mental illness involves not only decay and suffering, but also resilience and vitality.

Complex adaptive chronic care - typologies of patient journey: a case study.

PubMed

Martin, Carmel M; Grady, Deirdre; Deaconking, Susan; McMahon, Catherine; Zarabzadeh, Atieh; O'Shea, Brendan

2011-06-01

Complex adaptive chronic care (CACC) is a framework based upon complex adaptive systems' theory developed to address different stages in the patient journey in chronic illness. Simple, complicated, complex and chaotic phases are proposed as diagnostic types. To categorize phases of the patient journey and evaluate their utility as diagnostic typologies. A qualitative case study of two cohorts, identified as being at risk of avoidable hospitalization: 12 patients monitored to establish typologies, followed by 46 patients to validate the typologies. Patients were recruited from a general practitioner out-of-hours service. Self-rated health, medical and psychological health, social support, environmental concerns, medication adherence and health service use were monitored with phone calls made 3-5 times per week for an average of 4 weeks. Analysis techniques included frequency distributions, coding and categorization of patients' longitudinal data using a CACC framework. Twelve and 46 patients, mean age 69 years, were monitored for average of 28 days in cohorts 1 and 2 respectively. Cohorts 1 and 2 patient journeys were categorized as being: stable complex 66.66% vs. 67.4%, unstable complex 25% vs. 26.08% and unstable complex chaotic 8.3% vs. 6.52% respectively. An average of 0.48, 0.75 and 2 interventions per person were provided in the stable, unstable and chaotic journeys. Instability was related to complex interactions between illness, social support, environment, as well as medication and medical care issues. Longitudinal patient journeys encompass different phases with characteristic dynamics and are likely to require different interventions and strategies - thus being 'adaptive' to the changing complex dynamics of the patient's illness and care needs. CACC journey types provide a clinical tool for health professionals to focus time and care interventions in response to patterns of instability in multiple domains in chronic illness care. © 2011 Blackwell Publishing Ltd.

Nutritional Needs of the Child with a Handicap or Chronic Illness. Manual II: Clinical Nutrition. Presentations from a National Interdisciplinary Symposium.

ERIC Educational Resources Information Center

Ekvall, Shirley M.; Wheby, Elizabeth A.

The following papers were presented at a symposium on clinical nutrition for the child who is chronically ill or handicapped: (1) "Food Allergy"; (2) "Anemia and the Chronically Ill or Handicapped Child"; (3) "Nutrition and Neurotransmitters--Clinical Implications"; (4) "The Importance of Lipid Type in the Diet after Burn Injury"; (5) "Advances of…

Impact of chronic illness timing and persistence at school entry on child and parent outcomes: Australian longitudinal study.

PubMed

Quach, Jon; Barnett, Tony

2015-01-01

To understand the prevalence and timing of child chronic illness at school entry; associations with child learning, behavior and health-related quality of life and parent mental health at ages 6 to 7, 8 to 9, and 10 to 11 years; and cumulative health care costs. Data were drawn from the first 4 waves of the Longitudinal Study of Australian Children. Children were aged 4 to 5 years at wave 1, with data collection every 2 years. Parent-reported timing of child chronic illness at school entry was categorized into 4 chronic illness groups based on changes between waves 1 and 2: none, resolving, incident and persistent. Child outcomes included: parent-reported quality of life, parent- and teacher-reported behavior, teacher-reported child learning, teacher-reported child-teacher relationship, directly assessed nonverbal and verbal cognition and parent self-reported mental health. Linear regression, adjusted for gender and socioeconomic position, was used to quantify longitudinal associations between chronic illness timing at school entry with outcomes at age 6 to 7 years, 8 to 9 years and 10 to 11 years. Of the 4983 children enrolled in the study, chronic illness data was available for 4464 children (89.6%) at both waves 1 and 2. From wave 1, 6.1% had a condition that persisted until wave 2, while 14.1% had a condition that resolved. Furthermore, 4.7% had a newly emerging condition at wave 2. Compared with the no chronic illness group, children with persistent or emerging chronic illness during school entry had the poorest outcomes (except father's mental health) at all time points, while children with resolving conditions had smaller differences. Child chronic illness at school entry is associated with poorer longitudinal child and maternal outcomes. Therefore, future research should aim to determine the risk and protective factors that contribute to the poorer child and parent outcomes experienced in this growing population. Copyright © 2015 Academic Pediatric Association. Published by Elsevier Inc. All rights reserved.

Rationale, design and methods for a community-based study of clustering and cumulative effects of chronic disease processes and their effects on ageing: the Busselton healthy ageing study

PubMed Central

2013-01-01

Background The global trend of increased life expectancy and increased prevalence of chronic and degenerative diseases will impact on health systems. To identify effective intervention and prevention strategies, greater understanding of the risk factors for and cumulative effects of chronic disease processes and their effects on function and quality of life is needed. The Busselton Healthy Ageing Study aims to enhance understanding of ageing by relating the clustering and interactions of common chronic conditions in adults to function. Longitudinal (3–5 yearly) follow-up is planned. Methods/design Phase I (recruitment) is a cross-sectional community-based prospective cohort study involving up to 4,000 'Baby Boomers’ (born from 1946 to 1964) living in the Busselton Shire, Western Australia. The study protocol involves a detailed, self-administered health and risk factor questionnaire and a range of physical assessments including body composition and bone density measurements, cardiovascular profiling (blood pressure, ECG and brachial pulse wave velocity), retinal photography, tonometry, auto-refraction, spirometry and bronchodilator responsiveness, skin allergy prick tests, sleep apnoea screening, tympanometry and audiometry, grip strength, mobility, balance and leg extensor strength. Cognitive function and reserve, semantic memory, and pre-morbid intelligence are assessed. Participants provide a fasting blood sample for assessment of lipids, blood glucose, C-reactive protein and renal and liver function, and RNA, DNA and serum are stored. Clinically relevant results are provided to all participants. The prevalence of risk factors, symptoms and diagnosed illness will be calculated and the burden of illness will be estimated based on the observed relationships and clustering of symptoms and illness within individuals. Risk factors for combinations of illness will be compared with those for single illnesses and the relation of combinations of illness and symptoms to cognitive and physical function will be estimated. Discussion This study will enable a thorough characterization of multiple disease processes and their risk factors within a community-based sample of individuals to determine their singular, interactive and cumulative effects on ageing. The project will provide novel cross-sectional data and establish a cohort that will be used for longitudinal analyses of the genetic, lifestyle and environmental factors that determine whether an individual ages well or with impairment. PMID:24099269

The impact of chronic physical illness, maternal depressive symptoms, family functioning, and self-esteem on symptoms of anxiety and depression in children.

PubMed

Ferro, Mark A; Boyle, Michael H

2015-01-01

The present study extends earlier research identifying an increased risk of anxiety among children with chronic physical illness (CwCPI) by examining a more complete model that explains how physical illness leads to increased symptoms of anxiety and depression. We tested a stress-generation model linking chronic physical illness to symptoms of anxiety and depression in a population-based sample of children aged 10 to 15 years. We hypothesized that having a chronic physical illness would be associated with more symptoms of anxiety and depression, increased levels of maternal depressive symptoms, more family dysfunction, and lower self-esteem; and, that maternal depressive symptoms, family dysfunction, and child self-esteem would mediate the influence of chronic physical illness on symptoms of anxiety and depression. Data came from the National Longitudinal Survey of Children and Youth (N = 10,646). Mediating processes were analyzed using latent growth curve modeling. Childhood chronic physical illness was associated with increases in symptoms of anxiety and depression, β = 0.20, p < 0.001. Mediating effects were also observed such that chronic physical illness resulted in increases in symptoms of maternal depression and family dysfunction, leading to declines in child self-esteem, and in turn, increases in symptoms of anxiety and depression. CwCPI are at-risk for symptoms of anxiety and depression. Some of this elevated risk appears to work through family processes and child self-esteem. This study supports the use of family-centered care approaches among CwCPI to minimize burden on families and promote healthy psychological development for children.

The impact of illness-related shame on psychological health and social relationships: Testing a mediational model in students with chronic illness.

PubMed

Trindade, Inês A; Duarte, Joana; Ferreira, Cláudia; Coutinho, Mariana; Pinto-Gouveia, José

2018-05-01

This study explores the impact of illness-related shame on the quality of social relationships and psychological health in chronic patients. We aimed to examine the roles of fear of receiving compassion from others and experiential avoidance as potential mediators of this relationship. Although some studies have demonstrated the negative impact of chronic illness-related shame on psychological functioning, the mechanisms that may underlie this link remain understudied. The sample was comprised by 115 college students, which had been diagnosed with at least 1 chronic illness. Participants completed self-report measures on an online platform. This study's design was cross-sectional. A path analysis was conducted using structural equation modelling. Results showed that the impact of illness-related shame on both psychological health (R 2  = .45) and the quality of social relationships (R 2  = .33) was fully accounted by fear of compassion from others and experiential avoidance. This model revealed an excellent fit. Fear of receiving compassion from others was the main mediator of the illness-related shame link with the quality of social relationships (β = -.22). The main mediator of the association between shame-related chronic illness and psychological health was experiential avoidance (β = -.21).This study shed light on possible psychological mechanisms linking feelings of shame associated with having a chronic condition and impaired social relationships and mental health. On one hand, resisting feelings of compassion and care from others and, on the other hand, avoiding difficult internal experiences and situations that might trigger them seem to underlie the impact of shame on psychological and social functioning in chronic patients. Copyright © 2018 John Wiley & Sons, Ltd.

Pre-travel advice seeking from GPs by travellers with chronic illness seen at a travel clinic.

PubMed

Gagneux-Brunon, Amandine; Andrillat, Carole; Fouilloux, Pascale; Daoud, Fatiha; Defontaine, Christiane; Charles, Rodolphe; Lucht, Frédéric; Botelho-Nevers, Elisabeth

2016-03-01

Travellers are ageing and frequently report chronic illness. Pre-travel health advice is crucial, particularly in this subgroup, and general practitioners (GPs) are first in line for treatment adjustment before departure. Our aim is to evaluate pre-travel health advice seeking from GPs by travellers with chronic illness seen at a travel clinic. A cross-sectional observational survey using a questionnaire was conducted between August 2013 and July 2014 in travellers attending the travel medicine clinic of a tertiary university hospital in France. During the study, 2019 travellers were included. Mean age was 39.4 years (±18.8). Three hundred and ninety-one (19.4%) travellers reported a history of a chronic illness. Arterial hypertension and diabetes mellitus were the most frequently reported illnesses, affecting, respectively, 168 (8.3%) travellers and 102 (5.1%). Hajj pilgrims were more likely to report a history of chronic illness than other travellers. Only 810 (40.1%) travellers sought pre-travel advice from their GP. Six hundred and fifty-two (40.1%) healthy travellers and 158 (40.5%) travellers reporting chronic illness sought pre-travel advice from their GP (P = 0.96). Travellers with a history of chronic illness do not seek pre-travel health advice from their GP more frequently than healthy travellers. Travel health specialists are generally not the best practitioners to manage the care of underlying medical conditions presenting risks during travel. However, GPs offer continuity and disease management expertise to improve the specificity of pre-travel planning. Thus, ongoing collaboration between the traveller, GP and travel health specialist is likely to yield the best outcomes. © International Society of Travel Medicine, 2016. All rights reserved. Published by Oxford University Press. For permissions, please e-mail: journals.permissions@oup.com.

Persistent Neural Membrane Protein Misregulation Following Neurotoxicant Exposure

DTIC Science & Technology

2015-12-01

pesticides may not have posed a significant detriment to the health of the troops, synergisms arising from multiple chemical exposures could have...develop from load bearing microinjuries. The Research Advisory Committee on Gulf War Illness (GWI) has determined that pesticides may have...whether a subset of the many pesticides and related GW chemicals that were used during the conflict could produce chronic pain behaviors in a rat model

The Social Environment and Illness Uncertainty in Chronic Obstructive Pulmonary Disease

PubMed Central

Hoth, Karin F.; Wamboldt, Frederick S.; Ford, Dee W.; Sandhaus, Robert A.; Strange, Charlie; Bekelman, David B.; Holm, Kristen E.

2014-01-01

Purpose Illness uncertainty is associated with worse outcomes in patients with chronic health conditions. Research on social factors associated with uncertainty has focused on the beneficial role of social support. The goal of this study was to develop a more nuanced understanding of the social factors that are associated with uncertainty. Methods 462 individuals with alpha-1 antitrypsin deficiency (AATD) associated chronic obstructive pulmonary disease (COPD) completed a mailed questionnaire. Measures of the social environment included general family functioning, perceived criticism from family members, whether the participant had family members with AATD or COPD, and participation in support groups. Uncertainty was measured using the Mishel Uncertainty in Illness Scale including subscales for ambiguity (uncertainty about physical cues and symptoms) and complexity (uncertainty about treatment and the medical system). Hierarchical regression was used to identify social correlates of ambiguity and complexity while adjusting for demographic and medical characteristics and psychological distress. Results Perceived criticism was associated with more complexity (b=0.21, SE=0.09, p=0.015) and ambiguity (b=0.40, SE=0.12, p=0.001). Having a family member with AATD or COPD was associated with more ambiguity (b=3.28, SE=1.00, p=0.001). Participation in support groups was associated with less ambiguity. Individuals who attended three or more support groups in the prior year reported less ambiguity than individuals who had not attended any (b=−3.31, SE=1.29, p=0.010). Conclusions The social environment is complex and encompasses more than social support. Multiple aspects of the social environment are associated with uncertainty, including perceived criticism, having a family member with a similar illness, and participation in support groups. PMID:25008041

Websites as a mode of delivering mental health information: perceptions from the Australian public.

PubMed

Leach, Liana S; Christensen, Helen; Griffiths, Kathy M; Jorm, Anthony F; Mackinnon, Andrew J

2007-02-01

Many people with a mental disorder do not access help from mental health services. Internet websites may be a useful tool for disseminating mental health information to those who remain untreated, however little is known about people's perceptions of websites as mental health information sources. The current study examined characteristics that may influence belief in the helpfulness of websites as modes of delivering information about mental health. The study compared belief in the helpfulness websites to two traditional sources (bibliotherapy and health educators). A total of 3,998 Australians aged 18 and above were surveyed. Logistic regression was used to explore the factors associated with rating a website, book and health educator as helpful sources of mental health information for a person described as having either depression, depression with suicidal thoughts, early schizophrenia or chronic schizophrenia. Factors investigated were demographics, exposure to mental illness, beliefs about dealing with mental illness alone, and personal and perceived stigmatising attitudes. Considerably more participants rated bibliotherapy and health educators as helpful in comparison to websites. Predictors of rating a website and book as helpful were identical; younger age, belief that it is helpful to deal with mental illness alone and being presented with depression and early schizophrenia vignettes in comparison to chronic schizophrenia. Predictors of rating a health educator as helpful were younger age, less personal stigma and being presented with a depression (without suicidal thoughts) vignette in comparison to chronic schizophrenia. These findings suggest the need for multiple modes of delivering mental health information. While many people feel that information delivered face-to-face is likely to be helpful, websites and other tools that maintain anonymity may be preferred by those who choose to or find themselves dealing with mental illness alone.

Chronic biotoxin-associated illness: multiple-system symptoms, a vision deficit, and effective treatment.

PubMed

Hudnell, H Kenneth

2005-01-01

Blooms of toxigenic organisms have increased in spatial and temporal extent due to human activities and natural forces that alter ecologic habitats and pollute the environment. In aquatic environments, harmful algal blooms pose a risk for human health, the viability of organisms, and the sustainability of ecosystems. The estuarine dinoflagellate, Pfiesteria piscicida, was discovered in the late 1980s at North Carolina State University as a contaminant in fish cultures. P. piscicida was associated with fish death in laboratory aquaria, and illness among laboratory workers who inhaled the mist above aquaria. Both the fish and humans exhibited signs of toxicity. During the 1990s, large-scale mortality among fish and other aquatic organisms was associated with high concentrations of Pfiesteria sp. in estuaries on the eastern seaboard of North America from New York to Texas. Illness among humans was associated with direct exposure to estuaries and exposures to estuarine aerosols around the time of Pfiesteria-related fish kills. This review of the scientific literature on associations between Pfiesteria and human illness identified some of the possible mechanisms of action by which putative Pfiesteria toxins may have caused morbidity. Particular attention was given to the Pfiesteria-associated, human-illness syndrome known as Possible Estuary Associated Syndrome (PEAS). PEAS was characterized by multiple-system symptoms, deficits in neuropsychological tests of cognitive function, and rapid and severe decrements in visual contrast sensitivity (VCS), an indicator of neurologic function in the visual system. PEAS was diagnosed in acute and chronic illness cases, and was reacquired during re-exposure. Rapid normalization of PEAS signs and symptoms was achieved through the use of cholestyramine therapy. Cholestyramine, a non-absorbable polymer, has been used by humans to lower cholesterol levels since it was approved for that use by the U.S. Food and Drug Administration in 1958. When dissolved in water or juice and taken orally, cholestyramine binds with cholesterol, bile acids, and salts in the intestines, causing them to be eliminated rather than reabsorbed with bile during enterohepatic recirculation. Cholestyramine also has been reported to bind and eliminate a variety of toxic substances. The efficacy of cholestyramine therapy in treatment of PEAS supported the hypothesis that PEAS is a biotoxin-associated illness.

Beyond fighting fires and chasing tails? Chronic illness care plans in Ontario, Canada.

PubMed

Russell, Grant; Thille, Patricia; Hogg, William; Lemelin, Jacques

2008-01-01

Recent work has conceptualized new models for the primary care management of patients with chronic illness. This study investigated the experience of family physicians and patients with a chronic illness management initiative that involved the joint formulation of comprehensive individual patient care plans. A qualitative evaluation, framed by phenomenology, immediately followed a randomized controlled trial examining the effect of external facilitators in enhancing the delivery of chronic condition care planning in primary care. The study, set in Ontario family practices, used semistructured in-depth interviews with a purposive sample of 13 family physicians, 20 patients, and all 3 study facilitators. Analysis used independent transcript review and constant comparative methods. Despite the intervention being grounded in patient-centered principles, family physicians generally viewed chronic illness management from a predominantly biomedical perspective. Only a few enthusiasts viewed systematic care planning as a new approach to managing patients with chronic illness. Most family physicians found the strategy to be difficult to implement within existing organizational and financial constraints. For these participants, care planning conflicted with preexisting concepts of their role and of their patient's abilities to become partners in care. The few patients who noticed the process spoke favorably about their experience. Although the experiences of the enthusiastic family physicians were encouraging, we found important individual-level barriers to chronic illness management in primary care. These issues seemed to transcend existing organizational and resource constraints.

A role for communities in primary prevention of chronic illness? Case studies in regional Australia.

PubMed

Taylor, Judy; Braunack-Mayer, Annette; Cargo, Margaret; Larkins, Sarah; Preston, Robyn

2013-08-01

In regional Australia "communities of place," defined as bounded geographic locations with a local society, undertake community-wide primary prevention programs. In helping to prevent chronic illness, communities provide valuable resources to the health system. To understand the role of community-health sector partnerships for primary prevention and the community contextual factors that affect them, we studied eight partnerships. We used an embedded multiple case study design and collected data through interviews, nonparticipant observation, and document analysis. These data were analyzed using a typology of community-health sector partnerships and community interaction theory to frame the key community contextual factors that affected partnerships. The dominant factor affecting all partnerships was the presence of a collective commitment that communities brought to making the community a better place through developing health. We call this a communitarian approach. Additional research to investigate factors influencing a communitarian approach and the role it plays in partnerships is required.

The Impact of Family Behaviors and Communication Patterns on Chronic Illness Outcomes: A Systematic Review

PubMed Central

Rosland, Ann-Marie; Heisler, Michele; Piette, John D.

2013-01-01

In general, social support from family members affects chronic illness outcomes, but evidence on which specific family behaviors are most important to adult patient outcomes has not been summarized. We systematically reviewed studies examining the effect of specific family member behaviors and communication patterns on adult chronic illness self-management and clinical outcomes. Thirty studies meeting inclusion criteria were identified, representing 22 participant cohorts, and including adults with arthritis, chronic cardiovascular disease, diabetes, and/or end stage renal disease. Family emphasis on self-reliance and personal achievement, family cohesion, and attentive responses to symptoms were associated with better patient outcomes. Critical, overprotective, controlling, and distracting family responses to illness management were associated with negative patient outcomes. Study limitations included cross-sectional designs (11 cohorts), however results from longitudinal studies were similar. Findings suggest that future interventions aiming to improve chronic illness outcomes should emphasize increased family use of attentive coping techniques and family support for the patient’s autonomous motivation. PMID:21691845

Culture and Chronic Illness: Raising Children with Disabling Conditions in a Culturally Diverse World. Papers presented at an Invitational Conference (Racine, Wisconsin, June 1992).

ERIC Educational Resources Information Center

Pediatrics, 1993

1993-01-01

This special supplement presents two background papers, three working papers, and key recommendations from a conference on culture and chronic illness in childhood. The meeting had as its goal the identification of the state of knowledge on the interface among culture, chronic illness, child development, and family functioning, for the purpose of…

A shared respite—The meaning of place for family well-being in families living with chronic illness

PubMed Central

Årestedt, Liselott; Benzein, Eva; Persson, Carina; Rämgård, Margareta

2016-01-01

Living with chronic illness is a family affair that involves ongoing changes and challenges in everyday life. When life changes, the environment is important for family health and well-being. The relation between a place and a family is rarely described, and therefore the aim of this study was to explore the meaning of place for family well-being in families living with chronic illness. A qualitative design was chosen. Data were collected by photovoice combined with narrative family research interviews with 10 families living with chronic illness. A phenomenological hermeneutic analysis was used to interpret the data. The results showed that the meaning of place for family well-being in families living with chronic illness can be described as “a shared respite.” This main theme included three subthemes: “a place for relief,” “a place for reflection,” and “a place for re-creation.” These results were further understood by means of the concept place security. Feeling well means having place security in these families. Through knowledge about the meaning of place for family well-being, health care personnel can stimulate families living with chronic illness to find respite in places that contribute to well-being, both in familiar and new places. PMID:26956097

A shared respite--The meaning of place for family well-being in families living with chronic illness.

PubMed

Årestedt, Liselott; Benzein, Eva; Persson, Carina; Rämgård, Margareta

2016-01-01

Living with chronic illness is a family affair that involves ongoing changes and challenges in everyday life. When life changes, the environment is important for family health and well-being. The relation between a place and a family is rarely described, and therefore the aim of this study was to explore the meaning of place for family well-being in families living with chronic illness. A qualitative design was chosen. Data were collected by photovoice combined with narrative family research interviews with 10 families living with chronic illness. A phenomenological hermeneutic analysis was used to interpret the data. The results showed that the meaning of place for family well-being in families living with chronic illness can be described as "a shared respite." This main theme included three subthemes: "a place for relief," "a place for reflection," and "a place for re-creation." These results were further understood by means of the concept place security. Feeling well means having place security in these families. Through knowledge about the meaning of place for family well-being, health care personnel can stimulate families living with chronic illness to find respite in places that contribute to well-being, both in familiar and new places.

[Medical and social condition of families of patients with multiple sclerosis].

PubMed

Lugovtsova, Y A; Karnaukh, V N

2015-01-01

To analyze the medical and social condition of 70 families having a member with multiple sclerosis of working age. We used the classification of types and kinds of families of chronically ill patients of working-age that included two sections - grouping families by health and social status. By medical condition, most families are assessed as dysfunctional II degree, by welfare as at risk families. Both health and social status of the family depends on a number of social factors as well as the clinical characteristics of the disease, in particular, type of disease course and severity of neurological deficit.

Systematic review of positive youth development programs for adolescents with chronic illness.

PubMed

Maslow, Gary R; Chung, Richard J

2013-05-01

The Positive Youth Development (PYD) framework has been successfully used to support at-risk youth. However, its effectiveness in fostering positive outcomes for adolescents with chronic illness has not been established. We performed a systematic review of PYD-consistent programs for adolescents with chronic illness. Data sources included PubMed, CINAHL, and PsychINFO. Guided by an analytic framework, we searched for studies of PYD-consistent programs serving adolescents and young adults aged 13 through 24 with chronic illness. References were screened iteratively with increasing depth until a focused cohort was obtained and reviewed in full. The authors separately reviewed the studies using structured analysis forms. Relevant study details were abstracted during the review process. Fifteen studies describing 14 programs were included in the analysis. Three comprehensive programs included all 3 core components of a PYD program, including opportunities for youth leadership, skill building, and sustained connections between youth and adults. Four programs were primarily mentoring programs, and 7 others focused on youth leadership. Programs served youth with a variety of chronic illnesses. The quality and type of evaluation varied considerably, with most reporting psychosocial outcomes but only a few including medical outcomes. The PYD-consistent programs identified in this review can serve as models for the development of youth development programs for adolescents with chronic illness. Additional study is needed to evaluate such programs rigorously with respect to both psychosocial and health-related outcomes. PYD-consistent programs have the potential to reach youth with chronic illness and promote positive adult outcomes broadly.

Psychological interventions for mental health disorders in children with chronic physical illness: a systematic review.

PubMed

Bennett, Sophie; Shafran, Roz; Coughtrey, Anna; Walker, Susan; Heyman, Isobel

2015-04-01

Children with chronic physical illness are significantly more likely to develop common psychiatric symptoms than otherwise healthy children. These children therefore warrant effective integrated healthcare yet it is not established whether the known, effective, psychological treatments for symptoms of common childhood mental health disorders work in children with chronic physical illness. EMBASE, MEDLINE, PsycINFO and CINAHL databases were searched with predefined terms relating to evidence-based psychological interventions for psychiatric symptoms in children with chronic physical illness. We included all studies (randomised and non-randomised designs) investigating interventions aimed primarily at treating common psychiatric symptoms in children with a chronic physical illness in the review. Two reviewers independently assessed the relevance of abstracts identified, extracted data and undertook quality analysis. Ten studies (209 children, including 70 in control groups) met the criteria for inclusion in the review. All studies demonstrated some positive outcomes of cognitive behavioural therapy for the treatment of psychiatric symptoms in children with chronic physical illness. Only two randomised controlled trials, both investigating interventions for symptoms of depression, were found. There is preliminary evidence that cognitive behavioural therapy has positive effects in the treatment of symptoms of depression and anxiety in children with chronic physical illness. However, the current evidence base is weak and fully powered randomised controlled trials are needed to establish the efficacy of psychological treatments in this vulnerable population. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.

Post-millennial trends of socioeconomic inequalities in chronic illness among adults in Germany.

PubMed

Hoebel, Jens; Kuntz, Benjamin; Moor, Irene; Kroll, Lars Eric; Lampert, Thomas

2018-03-27

Time trends in health inequalities have scarcely been studied in Germany as only few national data have been available. In this paper, we explore trends in socioeconomic inequalities in the prevalence of chronic illness using Germany-wide data from four cross-sectional health surveys conducted between 2003 and 2012 (n = 54,197; ages 25-69 years). We thereby expand a prior analysis on post-millennial inequality trends in behavioural risk factors by turning the focus to chronic illness as the outcome measure. The regression-based slope index of inequality (SII) and relative index of inequality (RII) were calculated to estimate the extent of absolute and relative socioeconomic inequalities in chronic illness, respectively. The results for men revealed a significant increase in the extent of socioeconomic inequalities in chronic illness between 2003 and 2012 on both the absolute and relative scales (SII 2003  = 0.06, SII 2012  = 0.17, p-trend = 0.013; RII 2003  = 1.18, RII 2012  = 1.57, p-trend = 0.013). In women, similar increases in socioeconomic inequalities in chronic illness were found (SII 2003  = 0.05, SII 2012  = 0.14, p-trend = 0.022; RII 2003  = 1.14, RII 2012  = 1.40, p-trend = 0.021). Whereas in men this trend was driven by an increasing prevalence of chronic illness in the low socioeconomic group, the trend in women was predominantly the result of a declining prevalence in the high socioeconomic group.

Multi-Site Clinical Assessment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (MCAM): Design and Implementation of a Prospective/Retrospective Rolling Cohort Study

PubMed Central

Unger, Elizabeth R.; Lin, Jin-Mann S.; Tian, Hao; Natelson, Benjamin H.; Lange, Gudrun; Vu, Diana; Blate, Michelle; Klimas, Nancy G.; Balbin, Elizabeth G.; Bateman, Lucinda; Allen, Ali; Lapp, Charles W.; Springs, Wendy; Kogelnik, Andreas M.; Phan, Catrina C.; Danver, Joan; Podell, Richard N.; Fitzpatrick, Trisha; Peterson, Daniel L.; Gottschalk, C. Gunnar; Rajeevan, Mangalathu S.

2017-01-01

In the Multi-Site Clinical Assessment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (MCAM), we relied on expert clinician diagnoses to enroll patients from 7 specialty clinics in the United States in order to perform a systematic collection of data on measures of myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS). Healthy persons and those with other illnesses that share some features with ME/CFS were enrolled in comparison groups. The major objectives were to: 1) use standardized questionnaires to measure illness domains of ME/CFS and to evaluate patient heterogeneity overall and between clinics; 2) describe the course of illness, identify the measures that best correlate with meaningful clinical differences, and assess the performances of questionnaires as patient/person-reported outcome measures; 3) describe prescribed medications, orders for laboratory and other tests, and management tools used by expert clinicians to care for persons with ME/CFS; 4) collect biospecimens for future hypothesis testing and for evaluation of morning cortisol profiles; and 5) identify measures that best distinguish persons with ME/CFS from those in the comparison groups and detect subgroups of persons with ME/CFS who may have different underlying causes. Enrollment began in 2012 and is planned to continue in multiple stages through 2017. We present the MCAM methods in detail, along with an initial description of the 471 patients with ME/CFS who were enrolled in stage 1. PMID:28338983

Economic effectiveness of disease management programs: a meta-analysis.

PubMed

Krause, David S

2005-04-01

The economic effectiveness of disease management programs, which are designed to improve the clinical and economic outcomes for chronically ill individuals, has been evaluated extensively. A literature search was performed with MEDLINE and other published sources for the period covering January 1995 to September 2003. The search was limited to empirical articles that measured the direct economic outcomes for asthma, diabetes, and heart disease management programs. Of the 360 articles and presentations evaluated, only 67 met the selection criteria for meta-analysis, which included 32,041 subjects. Although some studies contained multiple measurements of direct economic outcomes, only one average effect size per study was included in the meta-analysis. Based on the studies included in the research, a meta-analysis provided a statistically significant answer to the question of whether disease management programs are economically effective. The magnitude of the observed average effect size for equally weighted studies was 0.311 (95% CI = 0.272-0.350). Statistically significant differences of effect sizes by study design, disease type and intensity of disease management program interventions were not found after a moderating variable, disease severity, was taken into consideration. The results suggest that disease management programs are more effective economically with severely ill enrollees and that chronic disease program interventions are most effective when coordinated with the overall level of disease severity. The findings can be generalized, which may assist health care policy makers and practitioners in addressing the issue of providing economically effective care for the growing number of individuals with chronic illness.

The experiences of chronically ill patients and registered nurses when they negotiate patient care in hospital settings: a feminist poststructural approach: A qualitative study that explores negotiation of patient care between patients and chronically ill patients in hospital settings.

PubMed

Griscti, Odette; Aston, Megan; Martin-Misener, Ruth; Mcleod, Deborah; Warner, Grace

2016-07-01

The aim of this study was to understand the experiences of chronically ill patients and registered nurse in negotiating patient care in hospital. Specifically, we explored how social and institutional discourses shaped power relations and negotiation of patient care. Current literature indicates that although nurses embrace this notion, such partnerships are not easily implemented. Most existing studies focus on the role of the nurse as the leader of the partnership with little attention paid to how social and institutional values, beliefs and practices shape nurse/patient power relations; or how these relationships are negotiated between nurses and patients. The theoretical and methodological approaches used in this study are based on the precepts of Foucault and feminist poststructural theorists. In depth interviews were conducted with eight chronically ill patients and 10 registered nurses. Both nurses and patients commented about the relationships that develop between nurses and chronically ill patients and how these relationships facilitate negotiation of patient care. Both parties described challenging moments and how institutional discourses may hinder positive negotiations of care. In this paper we highlight three themes that emerged: getting to know each other, they are not the sickest patients and finding time to listen. This study offers an innovative way of unpacking negotiation of care between chronically ill patients and registered nurses. It exposes how social and institutional discourses play a pivotal role in shaping negotiations between nurses and chronically ill patients. Negotiating care with chronically ill patients is not as asymmetric as portrayed in some of the literature and tends to be based on mutual agreements between nurses and patients. Nurses make it a point to listen to patients' needs and resist institutional discourses that preclude them from spending time with patients. © 2016 John Wiley & Sons Ltd.

The epidemiology of chronic critical illness in the United States*.

PubMed

Kahn, Jeremy M; Le, Tri; Angus, Derek C; Cox, Christopher E; Hough, Catherine L; White, Douglas B; Yende, Sachin; Carson, Shannon S

2015-02-01

The epidemiology of chronic critical illness is not well characterized. We sought to determine the prevalence, outcomes, and associated costs of chronic critical illness in the United States. Population-based cohort study using data from the United States Healthcare Costs and Utilization Project from 2004 to 2009. Acute care hospitals in Massachusetts, North Carolina, Nebraska, New York, and Washington. Adult and pediatric patients meeting a consensus-derived definition for chronic critical illness, which included one of six eligible clinical conditions (prolonged acute mechanical ventilation, tracheotomy, stroke, traumatic brain injury, sepsis, or severe wounds) plus at least 8 days in an ICU. None. Out of 3,235,741 admissions to an ICU during the study period, 246,151 (7.6%) met the consensus definition for chronic critical illness. The most common eligibility conditions were prolonged acute mechanical ventilation (72.0% of eligible admissions) and sepsis (63.7% of eligible admissions). Among patients meeting chronic critical illness criteria through sepsis, the infections were community acquired in 48.5% and hospital acquired in 51.5%. In-hospital mortality was 30.9% with little change over the study period. The overall population-based prevalence was 34.4 per 100,000. The prevalence varied substantially with age, peaking at 82.1 per 100,000 individuals 75-79 years old but then declining coincident with a rise in mortality before day 8 in otherwise eligible patients. Extrapolating to the entire United States, for 2009, we estimated a total of 380,001 cases; 107,880 in-hospital deaths and $26 billion in hospital-related costs. Using a consensus-based definition, the prevalence, hospital mortality, and costs of chronic critical illness are substantial. Chronic critical illness is particularly common in the elderly although in very old patients the prevalence declines, in part because of an increase in early mortality among potentially eligible patients.

Time spent on health related activities associated with chronic illness: a scoping literature review.

PubMed

Jowsey, Tanisha; Yen, Laurann; W, Paul Mathews

2012-12-03

The management of health care, particularly for people with chronic conditions, combines the activities of health professionals, patients, informal carers and social networks that support them. Understanding the non-professional roles in health management requires information about the health related activities (HRA) that are undertaken by patients and informal carers. This understanding allows management planning that incorporates the capacity of patients and informal carers, as well as identifying the particular skills, knowledge and technical support that are necessary. This review was undertaken to identify how much time people with chronic illness and their informal carers spend on HRA. Literature searches of three electronic databases (CINAHL, Medline, and PubMed) and two journals (Time and Society, Sociology of Health and Illness) were carried out in 2011 using the following search terms (and derivatives): chronic illness AND time AND consumer OR carer. The search was aimed at finding studies of time spent on HRA. A scoping literature review method was utilised. Twenty-two peer reviewed articles published between 1990 and 2010 were included for review. The review identified limited but specific studies about time use by people with a chronic illness and/or their carers. While illness work was seen as demanding, few studies combined inquiry about both defined tasks and defined time use. It also identified methodological issues such as consistency of definition and data collection methods, which remain unresolved. While HRA are seen as demanding by people doing them, few studies have measured actual time taken to carry out a comprehensive range of HRA. The results of this review suggest that both patients with chronic illness and informal carers may be spending 2 hours a day or more on HRA. Illnesses such as diabetes may be associated with higher time use. More empirical research is needed to understand the time demands of self-management, particularly for those affected by chronic illness.

The use of mixed methods in studying a chronic illness.

PubMed

Jason, Leonard A; Reed, Jordan

This article explores mixed methods approaches with an illness called Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS). Qualitative and Quantitative data were used to investigate the epidemiology of this illness, as well as explore attributions based on the name of the illness, and finally treatment approaches. In each of the domains within the ME and CFS research reviewed, our analyses were richer and our findings ultimately more impactful when we integrated qualitative and quantitative research methods. The use of a multiphase mixed methods research program provided our team unique vantage points for better understanding social and community issues involving this controversial chronic illness. Further, this approach allowed us to implement the insights gained through an advocacy lens to change policy, recommend and evaluate treatments, and amplify voices within the patient population. In this way, we believe that the practice of methodological pluralism is especially applicable and effective to the study of chronic illness, and believe other investigators will benefit from the use of these approaches with similar disenfranchised and unfairly treated populations.

High-quality chronic care delivery improves experiences of chronically ill patients receiving care

PubMed Central

Cramm, Jane Murray; Nieboer, Anna Petra

2013-01-01

Objective Investigate whether high-quality chronic care delivery improved the experiences of patients. Design This study had a longitudinal design. Setting and Participants We surveyed professionals and patients in 17 disease management programs targeting patients with cardiovascular diseases, chronic obstructive pulmonary disease, heart failure, stroke, comorbidity and eating disorders. Main Outcome Measures Patients completed questionnaires including the Patient Assessment of Chronic Illness Care (PACIC) [T1 (2010), 2637/4576 (58%); T2 (2011), 2314/4330 (53%)]. Professionals' Assessment of Chronic Illness Care (ACIC) scores [T1, 150/274 (55%); T2, 225/325 (68%)] were used as a context variable for care delivery. We used two-tailed, paired t-tests to investigate improvements in chronic illness care quality and patients' experiences with chronic care delivery. We employed multilevel analyses to investigate the predictive role of chronic care delivery quality in improving patients' experiences with care delivery. Results Overall, care quality and patients' experiences with chronic illness care delivery significantly improved. PACIC scores improved significantly from 2.89 at T1 to 2.96 at T2 and ACIC-S scores improved significantly from 6.83 at T1 to 7.18 at T2. After adjusting for patients' experiences with care delivery at T1, age, educational level, marital status, gender and mental and physical quality of life, analyses showed that the quality of chronic care delivery at T1 (P < 0.001) and changes in care delivery quality (P < 0.001) predicted patients' experiences with chronic care delivery at T2. Conclusion This research showed that care quality and changes therein predict more positive experiences of patients with various chronic conditions over time. PMID:24123243

Program for the Chronically Ill.

ERIC Educational Resources Information Center

Schoenherr, Arline; Schnarr, Barbara

The program for chronically ill students in the Detroit public schools is described. Forms are presented listing needed information and implications for teachers of the following conditions: diabetes, sickle cell anemia, chronic renal failure, congenital heart disease, hemophilia, rheumatoid arthritis, asthma, leukemia, and cystic fibrosis. The…

Self-esteem in adults with Tourette syndrome and chronic tic disorders: The roles of tic severity, treatment, and comorbidity.

PubMed

Weingarden, Hilary; Scahill, Lawrence; Hoeppner, Susanne; Peterson, Alan L; Woods, Douglas W; Walkup, John T; Piacentini, John; Wilhelm, Sabine

2018-07-01

Tourette syndrome (TS) and chronic tic disorders (CTD) are stigmatizing disorders that may significantly impact self-esteem. Alternatively, comorbid psychiatric illnesses may affect self-esteem more than tics themselves. Extant research on self-esteem in TS/CTD is limited, has inconsistently examined the effect of comorbidities on self-esteem, and yields mixed findings. This study aimed to clarify the roles of tics versus comorbid diagnoses on self-esteem in a large, carefully diagnosed sample of adults with TS/CTD (N = 122) receiving 10 weeks of Comprehensive Behavioral Intervention for Tics (CBIT) or Psychoeducation and Supportive Therapy (PST). Baseline self-esteem did not differ between adults with TS/CTD only and normative means, whereas self-esteem was significantly lower among adults with TS/CTD with a comorbid psychiatric illness. In a multiple regression testing the baseline association between tic severity, presence of comorbid psychiatric illness, and depression severity with self-esteem, comorbidity and depression severity were significantly associated with self-esteem, whereas tic severity was not. Finally, using a generalized linear model, we tested the effects of treatment assignment, comorbidity, and their interaction on changes in self-esteem across treatment, controlling for baseline depression severity. Results showed that for those with a comorbid illness, self-esteem improved significantly more with CBIT than with PST. Comorbid illnesses appear to affect self-esteem more so than tics among adults with TS/CTD. Therapeutic attention should be paid to treating comorbid diagnoses alongside tics when treating TS/CTD. Copyright © 2018 Elsevier Inc. All rights reserved.

Psychosocial Impact of Terminal Chronic Illness.

ERIC Educational Resources Information Center

Chubon, Robert A.

1988-01-01

Development of a terminal chronic illness creates a spectrum of problems which call for counseling interventions to assist in the individual's adjustment. This overview, intended to raise the consciousness of rehabilitation counselors, outlines the three stages of terminal illness, followed by an examination of resulting lifestyle and relationship…

Exploring views on satisfaction with life in young children with chronic illness: an innovative approach to the collection of self-report data from children under 11.

PubMed

Christie, Deborah; Romano, Gabriella; Barnes, Jacqueline; Madge, Nicola; Nicholas, David B; Koot, Hans M; Armstrong, Daniel F; Shevlin, Mark; Kantaris, Xenya; Khatun, Hasina; Sutcliffe, Alastair G

2012-01-01

The objective of this study was to explore young children's views on the impact of chronic illness on their life in order to inform future development of a patient-based self-report health outcome measure. We describe an approach to facilitating self-report views from young children with chronic illness. A board game was designed in order to obtain qualitative data from 39 children with a range of chronic illness conditions and 38 healthy controls ranging in age from 3 to 11 years. The format was effective in engaging young children in a self-report process of determining satisfaction with life and identified nine domains. The board game enabled children aged 5-11 years with chronic illness to describe the effects of living with illness on home, family, friends, school and life in general. It generated direct, non-interpreted material from children who, because of their age, may have been considered unable or limited their ability to discuss and describe how they feel. Obtaining this information for children aged 4 and under continues to be a challenge.

The efficacy of a senior outreach program in the reduction of hospital readmissions and emergency department visits among chronically ill seniors.

PubMed

Prior, Michael K; Bahret, Beverly A; Allen, Reva I; Pasupuleti, Sudershan

2012-01-01

This study reports on the effectiveness of a community-based senior outreach program in decreasing rehospitalizations and emergency department visits among chronically ill seniors. Participants had been repeatedly hospitalized with chronic illnesses and were subsequently served in an in-home program designed to address their psychosocial and medical needs. Participation in the program was found to be related to lower hospital readmission rates and emergency department usage. Clients also reported decreased financial concerns and depression and anxiety and increased social support. The study adds to the growing body of work supporting community-based programs as effective strategies for decreasing health care usage and improving quality of life for chronically ill seniors.

Within the web: the family-practitioner relationship in the context of chronic childhood illness.

PubMed

Dickinson, Annette R; Smythe, Elizabeth; Spence, Deb

2006-12-01

This hermeneutic phenomenological study explores the relationship between health professionals and families who have a child with a chronic illness. Study participants included 10 family groups who had a child with a chronic illness and 12 practitioners from the disciplines of nursing, medicine, dietetics, physiotherapy and speech therapy. Data were collected by narrative audiotaped interviewing. The results of this study revealed that chronic childhood illness 'throws' families and practitioners together into a web of relationships, which must work for the sake of the child. However, children are usually excluded from the relationship. To understand and manage the child's illness, practitioners and families 'go around' and act 'in-between' relationships. While the quality of the relationship from the family perspective is not essential, relationships are more successful when practitioners recognize the uniqueness of each family web. The nature of the relationship is often simple, yet it coexists with complexity.

A review of factors associated with mental health in siblings of children with chronic illness.

PubMed

Incledon, Emily; Williams, Lauren; Hazell, Trevor; Heard, Todd R; Flowers, Alexandra; Hiscock, Harriet

2015-06-01

This article reviews the literature on modifiable factors associated with mental health in siblings of children with chronic illness. Three clinical databases were searched. A total of 17 studies met the inclusion criteria. Several key themes emerged from the review. Better sibling mental health was associated with camp attendance, perceived parent/peer support, illness education and enhancing control through cognitive coping strategies and routine. Parental and sibling psychoeducation interventions and social support may enhance children's mental health when their sibling has a chronic illness. © The Author(s) 2013.

Maintaining the balance: older adults with chronic health problems manage life in the community.

PubMed

Jacelon, Cynthia S

2010-01-01

The purpose of this research was to identify themes in the daily lives of community-dwelling older adults with chronic health problems. Qualitative descriptive methods based on symbolic interaction were used. Data were generated through unstructured interviews, participant diaries, and researcher logs. Participants were interviewed twice and kept diaries in between. Measures to enhance trustworthiness included bracketing, multiple data sources, repeated interviews, prolonged engagement, an audit trail, participant checking, and consultation with an expert qualitative researcher. Ten older adults 75-98 years of age living in their own homes with at least one self-reported chronic health problem participated in the research. Participants' health problems varied, and they developed strategies to maintain balance in activity, attitude, autonomy, health, and relationships. This research provides a new perspective on living with chronic illness, and the model may provide a framework for rehabilitation nurses who work with older adults.

Effects of loneliness on illness perception in persons with a chronic disease.

PubMed

Özkan Tuncay, Fatma; Fertelli, Tülay; Mollaoğlu, Mukadder

2018-04-01

To determine the effects of loneliness on illness perception in persons with a chronic disease. How an illness is perceived not only affects all dimensions of a person's life but also plays an important role in his/her coping with the complications and consequences of the disease. One of the factors that influence the illness perception is loneliness. The study is a descriptive study. The study sample included 206 individuals over the 18 years of age, conscious, having had a chronic illness at least 1 year, having no communication problems and agreeing to participate in the study after being informed about the study. Data were collected with the Personal Information Form, the Illness Perception Questionnaire and the University of California Los Angeles Loneliness Scale. The forms were administered to the participants in an unoccupied patient room, and the data were collected through face-to-face interviews. The results of the study revealed that individuals with a chronic disease perceived emotional symptoms accompanying the disease more intensely that they accepted their disease was a chronic one and that their personal control and treatment control of the disease were at a middle level. The mean score the participants obtained from the University of California Los Angeles Loneliness Scale was 38.49 ± 11.15. There was a significant negative correlation between this mean score and the mean scores obtained from the following subscales consequences, treatment control, illness perception and emotional representations. In this study, it was concluded that the participants perceived their loneliness level as moderate and that their illness perception was negatively affected as their loneliness levels increased. The knowledge of clinical nurses about perception of patients with chronic illnesses and conditions affecting that perception will enhance compliance with the illness management or treatment strategies. Clinical nurses should observe residents closely for signs of depression and loneliness and support their sense of coherence to reduce emotional and social loneliness. © 2018 John Wiley & Sons Ltd.

How Do Experienced Physicians Access and Evaluate Laboratory Test Results for the Chronic Patient? A Qualitative Analysis.

PubMed

Torsvik, Torbjørn; Lillebo, Børge; Hertzum, Morten

2018-04-01

 Electronic health records may present laboratory test results in a variety of ways. Little is known about how the usefulness of different visualizations of laboratory test results is influenced by the complex and varied process of clinical decision making.  The purpose of this study was to investigate how clinicians access and utilize laboratory test results when caring for patients with chronic illness.  We interviewed 10 attending physicians about how they access and assess laboratory tests when following up patients with chronic illness. The interviews were audio-recorded, transcribed verbatim, and analyzed qualitatively.  Informants preferred different visualizations of laboratory test results, depending on what aspects of the data they were interested in. As chronic patients may have laboratory test results that are permanently outside standardized reference ranges, informants would often look for significant change, rather than exact values. What constituted significant change depended on contextual information (e.g., the results of other investigations, intercurrent diseases, and medical interventions) spread across multiple locations in the electronic health record. For chronic patients, the temporal relations between data could often be of special interest. Informants struggled with finding and synthesizing fragmented information into meaningful overviews.  The presentation of laboratory test results should account for the large variety of associated contextual information needed for clinical comprehension. Future research is needed to improve the integration of the different parts of the electronic health record. Schattauer GmbH Stuttgart.

Therapeutic Approach to the Management of Pediatric Demyelinating Disease: Multiple Sclerosis and Acute Disseminated Encephalomyelitis.

PubMed

Brenton, J Nicholas; Banwell, Brenda L

2016-01-01

Acquired pediatric demyelinating diseases manifest acutely with optic neuritis, transverse myelitis, acute disseminated encephalomyelitis, or with various other acute deficits in focal or polyfocal areas of the central nervous system. Patients may experience a monophasic illness (as in the case of acute disseminated encephalomyelitis) or one that may manifest as a chronic, relapsing disease [e.g., multiple sclerosis (MS)]. The diagnosis of pediatric MS and other demyelinating disorders of childhood has been facilitated by consensus statements regarding diagnostic definitions. Treatment of pediatric MS has been modeled after data obtained from clinical trials in adult-onset MS. There are now an increasing number of new therapeutic agents for MS, and many will be formally studied for use in pediatric patients. There are important efficacy and safety concerns regarding the use of these therapies in children and young adults. This review will discuss acute management as well as chronic immunotherapies in acquired pediatric demyelination.

Application of mixed-methods design in community-engaged research: Lessons learned from an evidence-based intervention for Latinos with chronic illness and minor depression.

PubMed

Aguado Loi, Claudia X; Alfonso, Moya L; Chan, Isabella; Anderson, Kelsey; Tyson, Dinorah Dina Martinez; Gonzales, Junius; Corvin, Jaime

2017-08-01

The purpose of this paper is to share lessons learned from a collaborative, community-informed mixed-methods approach to adapting an evidence-based intervention to meet the needs of Latinos with chronic disease and minor depression and their family members. Mixed-methods informed by community-based participatory research (CBPR) were employed to triangulate multiple stakeholders' perceptions of facilitators and barriers of implementing the adapted intervention in community settings. Community partners provided an insider perspective to overcome methodological challenges. The study's community informed mixed-methods: research approach offered advantages to a single research methodology by expanding or confirming research findings and engaging multiple stakeholders in data collection. This approach also allowed community partners to collaborate with academic partners in key research decisions. Copyright © 2016 Elsevier Ltd. All rights reserved.

Understanding stigma in chronic health conditions: implications for nursing.

PubMed

Engebretson, Joan

2013-10-01

This article explores the social processes in stigmatization and the theoretical background on the impact in chronic illness. Review of literature from social sciences and applications to health issues. Understanding the social utility of stigmatization in preserving social cohesion and protecting the social order is an important function. However, this process can be harmful when applied to persons with chronic illness, such as HIV-AIDS, and psychiatric illness. These individuals often become shamed, ostracized, isolated, discredited, and socially and economically marginalized. Recent theoretical work on stigma has identified several issues and patient responses that may have implications in many other chronic conditions. Stigma is based on visible or nonvisible health conditions and can be both externally imposed or perceived in a process of self-stigma. Understanding stigma can aid clinicians in providing supportive help for patients with chronic illness. Stigma has been well researched in a few chronic illnesses; however, future studies in other conditions are much needed. Recognizing the underlying social factors has potential use in health-promoting behaviors. Sensitivity to stigma allows health professionals to critically reflect on ways the healthcare environment may add to stigma for their patients. ©2013 The Author(s) ©2013 American Association of Nurse Practitioners.

Illness Perception and Information Behaviour of Patients with Rare Chronic Diseases

ERIC Educational Resources Information Center

Katavic, Snježana Stanarevic; Tanackovic, Sanjica Faletar; Badurina, Boris

2016-01-01

Introduction: This study examined possible correlations between health information behaviour and illness perception among patients with rare chronic diseases. Illness perception is related to coping strategies used by patients, and some health information behaviour practices may be associated with better coping and more positive perception of…

A Therapeutic Approach for Treating Chronic Illness and Disability among College Students

ERIC Educational Resources Information Center

Haemmelmann, Katie L.; McClain, Mary-Catherine

2013-01-01

Research in chronic illness and disability (CID) in college students has demonstrated that students with disabilities encounter more difficulties psychosocially than their nondisabled counterparts. Subsequently, these difficulties impact the ability of these students to successfully adapt. Using the illness intrusiveness model in combination with…

Innovative model uses a new brand of specialist to target the high-risk chronically ill.

PubMed

2002-06-01

Some patients simply can't be taken care of in your typical 15-minute office visit. That's why a Houston-based organization developed a new model--and a new specialist--to deal with the growing number of patients affected by multiple diagnoses and other factors putting them at high risk for hospital utilization. With early success, the approach has now attracted the attention of Medicare and other insurers.

Coping strategies in episodic and chronic tension-type headache.

PubMed

Rollnik, J D; Karst, M; Fink, M; Dengler, R

2001-03-01

To study the importance of coping with illness strategies in tension-type headache (TTH). The pathophysiology of TTH is complex, and coping with illness strategies might contribute to the transformation to a chronic form. We examined 89 subjects (mean age, 45.6 +/- 14.8 years; range, 18 to 72 years) with episodic (n = 37) and chronic (n = 52) TTH. Patients were required to fill in a Freiburg Questionnaire of Coping with Illness (FQCI), a von Zerssen Depression Scale, quality-of-life questionnaires, and a headache home diary (over 4 weeks). In addition, pressure pain thresholds (temporal muscles) and total tenderness scores were obtained. Patients with chronic TTH exhibited poorer quality-of-life measures, slightly more depressive symptoms, and significantly stronger avoidance behavior and endurance strategies on FQCI scales F4 and F5 (P< .05). There was no difference between episodic and chronic TTH with respect to measures of muscle tenderness or pain thresholds. We conclude that disadvantageous coping with illness strategies might contribute to a transformation to chronic TTH.

Loving your child to death: Considerations of the care of chronically ill children and euthanasia in Emil Sher’s Mourning Dove

PubMed Central

Mukhida, Karim

2007-01-01

How do parents cope when their child is ill or dying, and when he or she is experiencing constant pain or suffering? What do parents think of the contributions that medical professionals make to the care of their chronically or terminally ill child? Is it possible for a parent to love a child so much that they wish their child to be dead? The purpose of the present paper is to explore these questions and aspects of the care of chronically or terminally ill children using Mourning Dove’s portrayal of one family’s attempt to care for their ill daughter. Mourning Dove, a play written by Canadian playwright Emil Sher, was inspired by the case of Saskatchewan wheat farmer Robert Latimer who killed his 12-year-old daughter, Tracy, who suffered with cerebral palsy and had begun to experience tremendous pain. Rather than focusing on the medical or legal aspects of the care of a chronically ill child, the play offers a glimpse into how a family copes with the care of such a child and the effect the child’s illness has on the family. The reading and examination of nonmedical literature, such as Mourning Dove, serves as a useful means for medical professionals to better understand how illness affects and is responded to by patients and their families. This understanding is a prerequisite for them to be able to provide complete care of children with chronic or terminal illnesses and their families. PMID:19043501

Pilot undergraduate course teaches students about chronic illness in children: an educational intervention study.

PubMed

Montenegro, Roberto E; Birnie, Krista D; Fisher, Paul Graham; Dahl, Gary V; Binkley, John; Schiffman, Joshua D

2014-01-01

Recent data question whether medical education adequately prepares physicians to care for the growing number of children with chronic medical conditions. We describe a 10-week course designed to provide undergraduate students with the knowledge and skills required to understand and care for children with chronic or catastrophic illnesses. The course presented the illness experience from the child's perspective and thus presented information in a manner that was efficient, conducive, and memorable. The curriculum was designed like a graduate-level seminar that included workshops, lectures, readings, writing, and lively discussions. This is an educational intervention study that used survey data to assess changes in attitudes among and between participants completing this course versus students not exposed to this course. We used Somers' D test and Fisher's z-transformation to perform both pre- and post-nonparametric comparisons. Course participants were more likely to change their attitudes and agree that chronically ill children "feel comfortable talking with their peers about their condition" (P=0.003) and less likely to agree that these children "want to be treated differently," "want more sympathy," or "care less about romantic relationships" (P = 0.003, 0.002 and 0.02, respectively). Controls were more likely to continue to agree that chronically ill children "want to be treated differently" (P = 0.009) and "care less about romantic relationships" (P = 0.02), and less likely to agree that these children "talk openly" or "feel comfortable talking with their peers about their condition" (P = 0.04). This classroom-based course serves as a feasible and cost-effective model for universities and medical schools to aid in improving student attitudes toward treating chronically ill children. The course provides the unique opportunity to learn directly from those who care for and those who have lived with chronic illness.

Understanding the school experiences of children and adolescents with serious chronic illness: a systematic meta-review.

PubMed

Lum, A; Wakefield, C E; Donnan, B; Burns, M A; Fardell, J E; Marshall, G M

2017-09-01

Serious chronic illness can have a detrimental effect on school attendance, participation and engagement, leaving affected students at risk of failing to meet their developmental potential. An improved understanding of factors that help to explain or mitigate this risk can help educators and health professionals deliver the most effective support. This meta-review critiqued the available evidence examining the link between six chronic illnesses (asthma, cancer, chronic kidney diseases, heart diseases, cystic fibrosis and gastrointestinal diseases) and children's and adolescents' school experiences and outcomes, as well as investigating the medical, school, psychosocial and sociodemographic factors that are linked to poorer or better school outcomes. We searched CINAHL, Cochrane Database, EMBASE, ERIC, MEDLINE, ProQuest Theses and Dissertations, and PsycINFO (2000-2015). Systematic and narrative reviews, and meta-analyses, of original studies examining students' subjective school experiences and objective school outcomes were eligible. We used the Preferred Reporting Items for Systematic Reviews and Meta-analyses criteria to critically appraise all systematic reviews. The Grading of Recommendations Assessment, Development, and Evaluation system guided our recommendations for practice and research. Eighteen reviews of 172 studies including more than 40 000 students were eligible. Therefore, we chose to conduct a meta-review to provide an overview of the literature on the relationship between chronic illness and school experiences and outcomes. We also explored the associated medical, school, psychosocial and sociodemographic factors affecting the relationship between illness and school experiences and outcomes. Students with chronic illness demonstrate mixed school experiences and outcomes that are often worse than students without chronic illness. Modifiable factors, such as students' engagement with school, may be novel yet appropriate targets of educational support to ensure that these students reach their full schooling potential. © 2017 John Wiley & Sons Ltd.

Patients understanding of depression associated with chronic physical illness: a qualitative study

PubMed Central

2014-01-01

Background Detection of depression can be difficult in primary care, particularly when associated with chronic illness. Patient beliefs may affect detection and subsequent engagement with management. We explored patient beliefs about the nature of depression associated with physical illness. Methods A qualitative interview study of patients registered with general practices in Leeds, UK. We invited patients with coronary heart disease or diabetes from primary care to participate in semi-structured interviews exploring their beliefs and experiences. We analysed transcripts using a thematic approach, extended to consider narratives as important contextual elements. Results We interviewed 26 patients, including 17 with personal experience of depression. We developed six themes: recognising a problem, complex causality, the role of the primary care, responsibility, resilience, and the role of their life story. Participants did not consistently talk about depression as an illness-like disorder. They described a change in their sense of self against the background of their life stories. Participants were unsure about seeking help from general practitioners (GPs) and felt a personal responsibility to overcome depression themselves. Chronic illness, as opposed to other life pressures, was seen as a justifiable cause of depression. Conclusions People with chronic illness do not necessarily regard depression as an easily defined illness, especially outside of the context of their life stories. Efforts to engage patients with chronic illness in the detection and management of depression may need further tailoring to accommodate beliefs about how people view themselves, responsibility and negative views of treatment. PMID:24555886

'I stayed with my illness': a grounded theory study of health seeking behaviour and treatment pathways of patients with obstetric fistula in Kenya.

PubMed

Khisa, Anne M; Omoni, Grace M; Nyamongo, Isaac K; Spitzer, Rachel F

2017-09-29

Obstetric fistula classic symptoms of faecal and urinary incontinence cause women to live with social stigma, isolation, psychological trauma and lose their source of livelihoods. There is a paucity of studies on the health seeking behaviour trajectories of women with fistula illness although women live with the illness for decades before surgery. We set out to establish the complete picture of women's health seeking behaviour using qualitative research. We sought to answer the question: what patterns of health seeking do women with obstetric fistula display in their quest for healing? We used grounded theory methodology to analyse data from narratives of women during inpatient stay after fistula surgery in 3 hospitals in Kenya. Emergent themes contributed to generation of substantive theory and a conceptual framework on the health seeking behaviour of fistula patients. We recruited 121 participants aged 17 to 62 years whose treatment pathways are presented. Participants delayed health seeking, living with fistula illness after their first encounter with unresponsive hospitals. The health seeking trajectory is characterized by long episodes of staying home with illness for decades and consulting multiple actors. Staying with fistula illness entailed health seeking through seven key actions of staying home, trying home remedies, consulting with private health care providers, Non-Governmental organisations, prayer, traditional medicine and formal hospitals and clinics. Long treatment trajectories at hospital resulted from multiple hospital visits and surgeries. Seeking treatment at hospital is the most popular step for most women after recognizing fistula symptoms. We conclude that the formal health system is not responsive to women's needs during fistula illness. Women suffer an illness with a chronic trajectory and seek alternative forms of care that are not ideally placed to treat fistula illness. The results suggest that a robust health system be provided with expertise and facilities to treat obstetric fistula to shorten women's treatment pathways.

Race, unemployment rate, and chronic mental illness: a 15-year trend analysis.

PubMed

Lo, Celia C; Cheng, Tyrone C

2014-07-01

Before abating, the recession of the first decade of this century doubled the US unemployment rate. High unemployment is conceptualized as a stressor having serious effects on individuals' mental health. Data from surveys administered repeatedly over 15 years (1997-2011) described changes over time in the prevalence of chronic mental illness among US adults. The data allowed us to pinpoint changes characterizing the White majority--but not Black, Hispanic, or Asian minorities--and to ask whether such changes were attributable to economic conditions (measured via national unemployment rates). We combined 1.5 decades' worth of National Health Interview Survey data in one secondary analysis. We took social structural and demographic factors into account and let adjusted probability of chronic mental illness indicate prevalence of chronic mental illness We observed, as a general trend, that chronic mental illness probability increased as the unemployment rate rose. A greater increase in probability was observed for Blacks than Whites, notably during 2007-2011, the heart of the recession Our results confirmed that structural risk posed by the recent recession and by vulnerability to the recession's effects was differentially linked to Blacks. This led to the group's high probability of chronic mental illness, observed even when individual-level social structural and demographic factors were controlled. Future research should specify the particular kinds of vulnerability that created the additional disadvantage experienced by Black respondents.

Implementation of chronic illness care in German primary care practices--how do multimorbid older patients view routine care? A cross-sectional study using multilevel hierarchical modeling.

PubMed

Petersen, Juliana J; Paulitsch, Michael A; Mergenthal, Karola; Gensichen, Jochen; Hansen, Heike; Weyerer, Siegfried; Riedel-Heller, Steffi G; Fuchs, Angela; Maier, Wolfgang; Bickel, Horst; König, Hans-Helmut; Wiese, Birgitt; van den Bussche, Hendrik; Scherer, Martin; Dahlhaus, Anne

2014-08-07

In primary care, patients with multiple chronic conditions are the rule rather than the exception. The Chronic Care Model (CCM) is an evidence-based framework for improving chronic illness care, but little is known about the extent to which it has been implemented in routine primary care. The aim of this study was to describe how multimorbid older patients assess the routine chronic care they receive in primary care practices in Germany, and to explore the extent to which factors at both the practice and patient level determine their views. This cross-sectional study used baseline data from an observational cohort study involving 158 general practitioners (GP) and 3189 multimorbid patients. Standardized questionnaires were employed to collect data, and the Patient Assessment of Chronic Illness Care (PACIC) questionnaire used to assess the quality of care received. Multilevel hierarchical modeling was used to identify any existing association between the dependent variable, PACIC, and independent variables at the patient level (socio-economic factors, weighted count of chronic conditions, instrumental activities of daily living, health-related quality of life, graded chronic pain, no. of contacts with GP, existence of a disease management program (DMP) disease, self-efficacy, and social support) and the practice level (age and sex of GP, years in current practice, size and type of practice). The overall mean PACIC score was 2.4 (SD 0.8), with the mean subscale scores ranging from 2.0 (SD 1.0, subscale goal setting/tailoring) to 3.5 (SD 0.7, delivery system design). At the patient level, higher PACIC scores were associated with a DMP disease, more frequent GP contacts, higher social support, and higher autonomy of past occupation. At the practice level, solo practices were associated with higher PACIC values than other types of practice. This study shows that from the perspective of multimorbid patients receiving care in German primary care practices, the implementation of structured care and counseling could be improved, particularly by helping patients set specific goals, coordinating care, and arranging follow-up contacts. Studies evaluating chronic care should take into consideration that a patient's assessment is associated not only with practice-level factors, but also with individual, patient-level factors. Current Controlled Trials ISRCTN89818205.

Perceptions of chronically ill and healthy consumers about electronic personal health records: a comparative empirical investigation.

PubMed

Cocosila, Mihail; Archer, Norm

2014-07-23

To develop a model of consumer perceptions of electronic personal health records (PHRs) and validate it in a comparative study between consumers who report having a chronic illness and those who report being well. A model of PHR use motivators and barriers was built and tested through a national survey across Canada. Data were collected from 800 individuals, 18 years or older. Half reported having a chronic illness or disability and half reported being well. Analyses were performed with structural equation modelling techniques. A total of 389 answers from chronically ill and 383 from well participants were collected. Perceived usefulness was the key explanation of the intention to use PHRs for both ill and well people (total effect of 0.601 and 0.565, respectively) followed by security, privacy and trust in PHRs (total effect of 0.377 and 0.479, respectively). Conversely, computer anxiety was perceived as a significant barrier (total effect of -0.327 for ill individuals and -0.212 for well individuals). The model proposed was appropriate in explaining key consumer positive and negative perceptions on electronic PHR use. We found little difference in perceptions of electronic PHRs between chronically ill and well individuals, although self-reporting their health status might have influenced the results. To increase the adoption rate of electronic PHRs among both chronically ill and well consumers it is necessary to reinforce consumer perceptions of the usefulness of and trust in these eHealth technologies while mitigating their anxieties about computer use in general. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.

Experiences of coexisting with chronic illnesses among elderly women in communities.

PubMed

Chang, Yu-Mei; Tsao, Lee-Ing; Huang, Min-His

2014-01-01

Based on the increasing numbers of women in the aging population, the health of women will become critical in the future. Our purpose in this study was to analyze the experiences of elderly women with chronic illness. Twelve elderly Taiwanese women participated in in-depth interviews. "Using my own power out of the disease shackle" was the core category referring to elderly women who coexist with chronic illnesses. Elderly women should be provided with individually targeted plans for disease management and health maintenance to enable them to participate in health care decisions at the onset of chronic diseases.

The private struggle of mothers with asthma: a gender perspective on illness management.

PubMed

van Mens-Verhulst, Janneke; Radtke, H Lorraine; Spence, Cheryl D

2004-07-01

Little attention has been paid to the specific problems of mothers with chronic illness. In this study of mothers with asthma, we asked the question: "how do they manage their illness"? We interviewed a purposive sample of four Dutch and four Canadian mothers living with asthma and varying in age and socio-economic class. Our analysis explored challenges the mothers face, three main strategies of non-medical illness management (prevention, normalization and mobilizing support), and the influence of age and class differences. Unhealthy cycles of living with asthma are identified and suggestions for mother-specific interventions are offered. By drawing attention to the gendered nature of chronic illness management and to patients' own experiences, a more useful frame of reference is created for professionals who do not have first hand knowledge of living with a chronic illness.

Cancer screening, prevention, and treatment in people with mental illness

PubMed Central

Weinstein, Lara; Stefancic, Ana; Cummingham, Amy T.; Hurley, Katelyn E.; Cabassa, Leopodo; Wender, Richard

2015-01-01

People with mental illness die decades earlier in our country when compared to the general public Most of this disparity is related to preventable and treatable chronic conditions, with many studies finding cancer as the second leading cause of death. Individual lifestyle factors, such as smoking or limited adherence to treatment, are often cited as highly significant issues in shaping risk among persons with mental illness. However, many contextual or systems-level factors exacerbate these individual factors and may fundamentally drive health disparities among people with mental illness. We conducted an integrative review in order to summarize the empirical literature on cancer prevention, screening, and treatment for people with mental illness. While multiple interventions are being developed and tested to address tobacco dependence and obesity in these populations, the evidence for effectiveness is quite limited, and essentially all prevention interventions focus at the individual level. This review was able to find only one published article describing evidence-based interventions to promote cancer screening and improve cancer treatment in people with mental illness. Based on our review of the literature and the experience and expertise of the authors, we conclude each section with suggestions at the individual, interpersonal, organizational, community, and policy level that may improve cancer prevention, screening, and treatment in people with mental illness. PMID:26663383

Mothers' perceptions of sibling adjustment and family life in childhood chronic illness.

PubMed

Gallo, A M; Breitmayer, B J; Knafl, K A; Zoeller, L H

1993-10-01

Researchers who study the effects of chronic illness on well siblings have generally focused on individual characteristics and their relationships with psychological adjustment. More recently, researchers suggest that sibling adjustment can be best understood within the context of the family. The purpose of this study was to examine variations in sibling behavioral adjustment in relation to mothers' perceptions of the illness experience and family life. Based on mothers' ratings on the behavior problem scale of the Child Behavior Checklist (CBCL), five siblings considered poorly adjusted and five very well-adjusted siblings were compared with respect to mothers' reports of individual family member's response to illness, illness management, parenting philosophy, presence of other stressors, availability of social supports, and impact of illness on family members and family life. Two major differences were found between mothers who rated healthy siblings either poorly or very well adjusted: (a) effects of illness on the healthy sibling, the ill child, and the marital relationship and (b) perceived controllability of the chronic illness. Devising ways of helping mothers feel confident in managing their child's illness is integral to creating an environment that promotes optimal development of their ill child and the child's siblings.

Association between nutritional status and subjective health status in chronically ill children attending special schools.

PubMed

Joosten, Koen; van der Velde, Kelly; Joosten, Pieter; Rutten, Hans; Hulst, Jessie; Dulfer, Karolijn

2016-04-01

In hospitalized children with a chronic disease, malnutrition was associated with a lower subjective health status. In outpatient children with a chronic disease attending special schools, this association has never been studied. The aim of this study was to assess the association between nutritional status and subjective health status in chronically ill children attending special schools. Overall, 642 children, median age 9.8 years (IQR 7.7-11.5), 60 % male, 72 % Caucasian, were included in this prospective study in nine special schools for chronically ill children in the Netherlands. Overall malnutrition was assessed as: acute malnutrition (<-2 SDS for weight for height (WFH)) and chronic malnutrition (<-2 SDS for height for age). The malnutrition risk was assessed with the nutritional risk-screening tool STRONGkids. Subjective health status was assessed with EQ-5D. Overall, 16 % of the children had overall malnutrition: 3 % acute and 13 % chronic malnutrition. Nurses reported 'some/severe problems' on the health status dimensions mobility (15 %), self-care (17 %), usual activities (19 %), pain/discomfort (22 %), and anxiety/depression (22 %) in chronically ill children. Their mean visual analogue scale score (VAS) was 73.0 (SD 11.1). Malnutrition, medication usage, and younger age explained 38 % of the variance of the VAS score. The presence of overall malnutrition in chronically ill children attending special schools was associated with lower subjective health status, especially in younger children and in those with chronic medication usage. Therefore, it is important to develop and use profile-screening tools to identify these children.

Rethinking 'risk' and self-management for chronic illness.

PubMed

Morden, Andrew; Jinks, Clare; Ong, Bie Nio

2012-02-01

Self-management for chronic illness is a current high profile UK healthcare policy. Policy and clinical recommendations relating to chronic illnesses are framed within a language of lifestyle risk management. This article argues the enactment of risk within current UK self-management policy is intimately related to neo-liberal ideology and is geared towards population governance. The approach that dominates policy perspectives to 'risk' management is critiqued for positioning people as rational subjects who calculate risk probabilities and act upon them. Furthermore this perspective fails to understand the lay person's construction and enactment of risk, their agenda and contextual needs when living with chronic illness. Of everyday relevance to lay people is the management of risk and uncertainty relating to social roles and obligations, the emotions involved when encountering the risk and uncertainty in chronic illness, and the challenges posed by social structural factors and social environments that have to be managed. Thus, clinical enactments of self-management policy would benefit from taking a more holistic view to patient need and seek to avoid solely communicating lifestyle risk factors to be self-managed.

77 FR 64597 - Proposed Information Collection (Survey of Chronic Gastrointestinal Illness in Persian Gulf...

Federal Register 2010, 2011, 2012, 2013, 2014

2012-10-22

... information needed to evaluate chronic gastrointestinal disorders in Persian Gulf War Veterans. DATES: Written... deployed in the first Persian Gulf War returned with persistent gastrointestinal symptoms, typical of... of Chronic Gastrointestinal Illness in Persian Gulf Veterans (Irritable Bowel Syndrome--Diarrhea...

Modifiable correlates of illness perceptions in adults with chronic somatic conditions: A systematic review.

PubMed

Arat, Seher; De Cock, Diederik; Moons, Philip; Vandenberghe, Joris; Westhovens, René

2018-04-01

When individuals become ill, they want to understand and give meaning to their illness. The interpretation of this illness experience, or illness perception, is influenced by a range of individual, contextual, and cultural factors. Some of these factors may be modifiable by nursing interventions. The purpose of this systematic review was to investigate which modifiable factors were correlated with illness perceptions across studies of adults with different chronic somatic diseases. Using search terms tailored to each of four electronic databases, studies retrieved were reviewed by two independent evaluators, and each relevant article was assessed for methodological quality. Results were standardized by calculating correlation coefficients. Fifteen papers on illness perceptions in a variety of chronic diseases met the inclusion criteria. All used standardized measures of illness perceptions. We identified five groups of modifiable correlates of illness perceptions: illness-related factors, psychosocial factors, medication beliefs, information provision and satisfaction with information received, and quality of care. Our findings add to the knowledge of modifiable factors correlated with illness perceptions, including the importance of illness-related factors and psychosocial factors such as anxiety and depression. Knowledge of these correlates can facilitate understanding of patients' illness perceptions and might be useful in tailoring patient education programs. © 2018 Wiley Periodicals, Inc.

Health-related needs of people with multiple chronic diseases: differences and underlying factors.

PubMed

Hopman, Petra; Schellevis, François G; Rijken, Mieke

2016-03-01

To examine the health-related needs of people with multiple chronic diseases in the Netherlands compared to people with one chronic disease, and to identify different subgroups of multimorbid patients based on differences in their health problems. Participants were 1092 people with one or more chronic diseases of a nationwide prospective panel study on the consequences of chronic illness in the Netherlands. They completed the EQ-6D, a multi-dimensional questionnaire on health problems (October 2013). Chi-square tests and analyses of variance were performed to test for differences between multimorbid patients and patients with one chronic disease. To identify subgroups of multimorbid patients, cluster analysis was performed and differences in EQ-6D scores between clusters were tested with Chi-square tests. Multimorbid patients (51 % of the total sample) experience more problems in most health domains than patients with one chronic disease. Almost half (44 %) of the multimorbid people had many health problems in different domains. These people were more often female, had a smaller household size, had a lower health literacy, and suffered from more chronic diseases. Remarkably, a small subgroup of multimorbid patients (4 %, mostly elderly males) is characterized by all having cognitive problems. Based on the problems they experience, we conclude that patients with multimorbidity have relatively many and diverse health-related needs. Extensive health-related needs among people with multimorbidity may relate not only to the number of chronic diseases they suffer from, but also to their patient characteristics. This should be taken into account, when identifying target groups for comprehensive support programmes.

Introducing the chronic disease self-management program in Switzerland and other German-speaking countries: findings of a cross-border adaptation using a multiple-methods approach.

PubMed

Haslbeck, Jörg; Zanoni, Sylvie; Hartung, Uwe; Klein, Margot; Gabriel, Edith; Eicher, Manuela; Schulz, Peter J

2015-12-28

Stanford's Chronic Disease Self-Management Program (CDSMP) stands out as having a large evidence-base and being broadly disseminated across various countries. To date, neither evidence nor practice exists of its systematic adaptation into a German-speaking context. The objective of this paper is to describe the systematic German adaptation and implementation process of the CDSMP (2010-2014), report the language-specific adaptation of Franco-Canadian CDSMP for the French-speaking part of Switzerland and report findings from the initial evaluation process. Multiple research methods were integrated to explore the perspective of workshop attendees, combining a longitudinal quantitative survey with self-report questionnaires, qualitative focus groups, and interviews. The evaluation process was conducted in for both the German and French adapted versions to gain insights into participants' experiences in the program and to evaluate its impact. Perceived self-efficacy was measured using the German version of the Self-Efficacy for Managing Chronic Disease 6-Item Scale (SES6G). Two hundred seventy eight people attending 35 workshops in Switzerland and Austria participated in the study. The study participants were receptive to the program content, peer-led approach and found principal methods useful, yet the structured approach did not address all their needs or expectations. Both short and long-term impact on self-efficacy were observed following the workshop participation (albeit with a minor decrease at 6-months). Participants reported positive impacts on aspects of coping and self-care, but limited effects on healthcare service utilization. Our findings suggest that the process for cross-border adaptation was effective, and that the CDSMP can successfully be implemented in diverse healthcare and community settings. The adapted CDSMP can be considered an asset for supporting self-management in both German-and French-speaking central European countries. It could have meaningful, wide-ranging implications for chronic illness care and primary prevention and potentially tertiary prevention of chronic disease. Further investigations are needed to tailor the program for better access to vulnerable and disadvantaged groups who might benefit the most, in terms of facilitating their health literacy in chronic illness.

Mothers' Attributions Regarding the Behavior of Chronically Ill Children.

ERIC Educational Resources Information Center

Walker, Lynn S.

Parents of chronically ill children are faced with the difficult task of being vigilant and yet not overprotective of their children. The literature suggests that parents hold a positive bias toward their ill children. Attribution theory gives a framework in which to study parents' ideas about their children's behavior. A study was conducted to…

Health, Health Beliefs, and Body Image in School-Aged Girls.

ERIC Educational Resources Information Center

Johnson, Melissa Ramirez

When Spielberger's State-Trait Anxiety Scale was administered to 26 healthy and 26 chronically ill children, it was found that the chronically ill were significantly more anxious than the healthy. Results also suggested that the question of sex differences in children's emotional response to illness deserves further investigation in studies…

A Dyadic Approach: Applying a Developmental-Conceptual Model to Couples Coping with Chronic Illness

ERIC Educational Resources Information Center

Checton, Maria G.; Magsamen-Conrad, Kate; Venetis, Maria K.; Greene, Kathryn

2015-01-01

The purpose of the present study was to apply Berg and Upchurch's developmental-conceptual model toward a better understanding of how couples cope with chronic illness. Specifically, a model was hypothesized in which proximal factors (relational quality), dyadic appraisal (illness interference), and dyadic coping (partner support) influence…

Profiles of Chronic Illness Knowledge in a Community Sample of American Adults

ERIC Educational Resources Information Center

Jackson, Todd

2009-01-01

The author identified profiles of chronic illness knowledge (i.e., heart disease, cancer, diabetes) in a community sample of American adults and examined the effect of sociodemographic influences on relations of illness knowledge to health practices and well-being. Participants were 181 women and 120 men who completed measures of illness…

Return Migration among Elderly, Chronically Ill Bosnian Refugees: Does Health Matter?

PubMed Central

Handlos, Line Neerup; Olwig, Karen Fog; Bygbjerg, Ib Christian; Kristiansen, Maria; Norredam, Marie Louise

2015-01-01

Elderly migrants constitute a considerable share of global return migration; nevertheless, literature on the health aspects of the return migration among these migrants is still scarce. This study explores the significance of return migration among elderly, chronically ill Bosnian refugees from Denmark and the role of health issues in their decision to return. It is based on semi-structured interviews with 33 elderly, chronically ill Bosnian refugees who have moved back to Bosnia and Herzegovina, and 10 elderly, chronically ill Bosnian refugees who have remained in Denmark. The interviews show that physical health, in the sense of the absence of illness and easy access to necessary health-care services and medicines, was not highly prioritized when the decision was made whether or not to return. However, if health is regarded more broadly as involving more than mere physical health and the absence of illness, health did matter. Viewed as physical, social and mental well-being in line with WHO’s definition of health, health was indeed one of the most important factors when the decision to return was made. PMID:26473899

Return Migration among Elderly, Chronically Ill Bosnian Refugees: Does Health Matter?

PubMed

Handlos, Line Neerup; Olwig, Karen Fog; Bygbjerg, Ib Christian; Kristiansen, Maria; Norredam, Marie Louise

2015-10-12

Elderly migrants constitute a considerable share of global return migration; nevertheless, literature on the health aspects of the return migration among these migrants is still scarce. This study explores the significance of return migration among elderly, chronically ill Bosnian refugees from Denmark and the role of health issues in their decision to return. It is based on semi-structured interviews with 33 elderly, chronically ill Bosnian refugees who have moved back to Bosnia and Herzegovina, and 10 elderly, chronically ill Bosnian refugees who have remained in Denmark. The interviews show that physical health, in the sense of the absence of illness and easy access to necessary health-care services and medicines, was not highly prioritized when the decision was made whether or not to return. However, if health is regarded more broadly as involving more than mere physical health and the absence of illness, health did matter. Viewed as physical, social and mental well-being in line with WHO's definition of health, health was indeed one of the most important factors when the decision to return was made.

The use of mixed methods in studying a chronic illness

PubMed Central

Jason, Leonard A.; Reed, Jordan

2016-01-01

This article explores mixed methods approaches with an illness called Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS). Qualitative and Quantitative data were used to investigate the epidemiology of this illness, as well as explore attributions based on the name of the illness, and finally treatment approaches. In each of the domains within the ME and CFS research reviewed, our analyses were richer and our findings ultimately more impactful when we integrated qualitative and quantitative research methods. The use of a multiphase mixed methods research program provided our team unique vantage points for better understanding social and community issues involving this controversial chronic illness. Further, this approach allowed us to implement the insights gained through an advocacy lens to change policy, recommend and evaluate treatments, and amplify voices within the patient population. In this way, we believe that the practice of methodological pluralism is especially applicable and effective to the study of chronic illness, and believe other investigators will benefit from the use of these approaches with similar disenfranchised and unfairly treated populations. PMID:27088060

Birth order and its association with the onset of chronic fatigue syndrome.

PubMed

Brimacombe, Michael; Helmer, Drew A; Natelson, Benjamin H

2002-08-01

Chronic fatigue syndrome (CFS) is a medically unexplained illness that is diagnosed on the basis of a clinical case definition; so it probably is an illness with multiple causes producing the same clinical picture. One way of dealing with this heterogeneity is to stratify patients based on illness onset. We hypothesized that either the whole group of CFS patients or that group which developed CFS gradually would show a relation with birth order, while patients who developed CFS suddenly, probably due to a viral illness, would not show such a relation. We hypothesized the birth order effect in the gradual onset group because those patients have more psychological problems, and birth order effects have been shown for psychological characteristics. We compared birth order in our CFS patients to that in a comparison group derived from U.S. demographic data. We found a tendency that did not reach formal statistical significance for a birth order effect in the gradual onset group, but not in either the sudden onset or combined total group. However, the birth order effect we found was due to relatively increased rates of CFS in second-born children; prior birth order studies of personality characteristics have found such effects to be skewed toward first-born children. Thus, our data do support a birth order effect in a subset of patients with CFS. The results of this study should encourage a larger multicenter study to further explore and understand this relation.

Disability Risks of Chronic Illnesses and Impairments. Disability Statistics Report 2.

ERIC Educational Resources Information Center

LaPlante, Mitchell P.

This report provides results from an investigation of comparative disability risks of specific chronic physical and mental illnesses, diseases, and impairments. National estimates are presented of the risks of chronic health conditions causing disability--including activity limitation, work disability, and need for assistance in basic life…

Building on transformative learning and response shift theory to investigate health-related quality of life changes over time in individuals with chronic health conditions and disability.

PubMed

Barclay-Goddard, Ruth; King, Judy; Dubouloz, Claire-Jehanne; Schwartz, Carolyn E

2012-02-01

A major goal of treatment for people living with chronic illness or disability is self-management leading to optimized health-related quality of life. This change process has been described in the adult education literature as transformative learning, while in health-related quality of life research, response shift has emerged as a key concept. Response shift and transformative learning literature were reviewed, and the theoretical frameworks of the 2 concepts were compared and contrasted. Response shift is described as a change in internal standards, values, or definition of a construct (eg, health-related quality of life) over time, commonly seen in individuals with chronic illness. In the context of chronic illness, transformative learning is described as a complex process of personal change including beliefs, feelings, knowledge, and values. Transformative learning is often triggered by the diagnosis of a chronic illness. This results in a critical reflection of taken-for-granted assumptions and leads to new ways of thinking, influencing personal changes in daily living. Comparing the models of response shift and transformative learning in chronic illness, the catalyst in response shift appears comparable with the trigger in transformational learning; mechanisms to process of changing; and perceived quality of life to outcomes. Both transformative learning and response shift have much to offer health care providers in understanding the learning process for the person living with chronic illness or disability to optimize their quality of life. Suggestions for future research in response shift and transformative learning in individuals with chronic health conditions and disability are proposed. Copyright © 2012 American Congress of Rehabilitation Medicine. Published by Elsevier Inc. All rights reserved.

Depression and anxiety in patients on chronic hemodialysis in University Clinical Hospital Mostar.

PubMed

Klarić, Miro; Letica, Ivona; Petrov, Bozo; Tomić, Monika; Klarić, Branka; Letica, Ludvig; Francisković, Tanja

2009-12-01

Depression and anxiety are prevailing mental problem in patients on chronic hemodialysis and they have great influence on outcome of illness. Additionally, these disorders are rarely identified in that population of patients and they are insufficiently treated. The aim of this study was to assess the prevalence of depression and anxiety in patients on chronic hemodialysis in University Clinical Hospital Mostar and to examine the correlation between the demographic variables and the time spent on dialysis with depression and anxiety levels. The experimental group consisted of 56 patients on chronic hemodialysis in Mostar Clinical Hospital. The control group 1 consisted of 53 patients diagnosed with a chronic illness and treated for at least a year, while the control group 2 consisted of 51 persons who were not diagnosed with any chronic somatic or mental illness. Demographic data were collected using the constructed questionnaire. The Beck Depression Inventory-BDI was used to determine depression, while the Spielberger State-Trait Anxiety Inventory-STAI was used to determine anxiety. We recorded significantly higher prevalence of depression in patients on chronic dialysis (51.8%) than in patients with a chronic illness (41.5%) and persons without chronic illnesses (9.8%; p < 0.001). Trait anxiety level was significantly higher in hemodialysed patients compared to the other two groups (p = 0.006) but there were no significant differences in state anxiety level. The study has not shown any significant difference in the prevalence of depression and anxiety level regarding the differences in sex, gender and education level, apart from a higher level of state anxiety in patients with a lower education level (p = 0.032). These results indicate that patients on hemodialysis have a significantly higher level of depression and a higher level of trait anxiety compared to patients with chronic illnesses and especially compared to general population.

42 CFR 431.51 - Free choice of providers.

Code of Federal Regulations, 2010 CFR

2010-10-01

... developmental disabilities or with chronic mental illness. This limitation may only be permitted so that the... chronic mental illness are capable of ensuring that those individuals receive needed services. (d...

Paediatric chronic illness and educational failure: the role of emotional and behavioural problems.

PubMed

Layte, Richard; McCrory, Cathal

2013-08-01

Chronic illness in childhood is associated with worse educational outcomes. The association is usually explained via lowered cognitive development, decreased readiness to learn and school absence. However, this paper examines whether worse psychological adjustment may also play a role. We use data from the Growing Up in Ireland study, a cohort study, which collected data on 8,568 nine-year-old children through the Irish national school system using a two-stage sampling method. Maximum likelihood path analytic models are used to assess the direct effect of child chronic illness on reading and maths test scores and the mediating role of emotional and behavioural problems. In unadjusted analyses, children with a mental and behavioural condition scored 14.5 % points less on reading tests and 16.9 % points less on maths tests than their healthy peers. Children with non-mental and behavioural conditions scored 3 % points less on both tests, a significant difference. Mental and behavioural (OR, 9.58) and other chronic conditions (OR, 1.61) were significantly more likely to have 'high' levels of difficulties on the SDQ. Path analysis models showed that the association between chronic illness and educational test scores was completely mediated by emotional and behavioural problems controlling for school absence and bullying by peers. Child and adolescent chronic illness can have significant effects on educational development and a long-lasting impact on future life-chances. The psychological adjustment of the child is important in mediating the effect of chronic illness on educational outcomes. Interventions should target this developmental pathway.

Parenting stress among caregivers of children with chronic illness: a systematic review.

PubMed

Cousino, Melissa K; Hazen, Rebecca A

2013-09-01

To critically review, analyze, and synthesize the literature on parenting stress among caregivers of children with asthma, cancer, cystic fibrosis, diabetes, epilepsy, juvenile rheumatoid arthritis, and/or sickle cell disease. Method PsychInfo, MEDLINE, and Cumulative Index to Nursing and Allied Health Literature were searched according to inclusion criteria. Meta-analysis of 13 studies and qualitative analysis of 96 studies was conducted. Results Caregivers of children with chronic illness reported significantly greater general parenting stress than caregivers of healthy children (d = .40; p = ≤.0001). Qualitative analysis revealed that greater general parenting stress was associated with greater parental responsibility for treatment management and was unrelated to illness duration and severity across illness populations. Greater parenting stress was associated with poorer psychological adjustment in caregivers and children with chronic illness. Conclusion Parenting stress is an important target for future intervention. General and illness-specific measures of parenting stress should be used in future studies.

[Occupation-specific illnesses in musicians].

PubMed

Schuppert, M; Altenmüller, E

1999-12-01

Performance-related disorders in musicians are most often caused by multiple risk factors. They are based on the chronic complex, rapid and forceful work that requires highest precision, as well as on poor ergonomic conditions and psychological strain. Predominantly, the musculo-skeletal system of the upper extremity and the spine is affected by acute or chronic pain syndromes and neurological disorders. Stage fright and psychological tension frequently generate somatoform disorders and may contribute to the chronification of physical disabilities in musicians. Depending on the individual characteristics, the actual professional activity and the specific instrument, the performance-related risk factors and disorders differ widely. Early and regular prevention clearly contributes to a reduction of medical problems in musicians.

Adjusting health spending for the presence of comorbidities: an application to United States national inpatient data.

PubMed

Dieleman, Joseph L; Baral, Ranju; Johnson, Elizabeth; Bulchis, Anne; Birger, Maxwell; Bui, Anthony L; Campbell, Madeline; Chapin, Abigail; Gabert, Rose; Hamavid, Hannah; Horst, Cody; Joseph, Jonathan; Lomsadze, Liya; Squires, Ellen; Tobias, Martin

2017-08-29

One of the major challenges in estimating health care spending spent on each cause of illness is allocating spending for a health care event to a single cause of illness in the presence of comorbidities. Comorbidities, the secondary diagnoses, are common across many causes of illness and often correlate with worse health outcomes and more expensive health care. In this study, we propose a method for measuring the average spending for each cause of illness with and without comorbidities. Our strategy for measuring cause of illness-specific spending and adjusting for the presence of comorbidities uses a regression-based framework to estimate excess spending due to comorbidities. We consider multiple causes simultaneously, allowing causes of illness to appear as either a primary diagnosis or a comorbidity. Our adjustment method distributes excess spending away from primary diagnoses (outflows), exaggerated due to the presence of comorbidities, and allocates that spending towards causes of illness that appear as comorbidities (inflows). We apply this framework for spending adjustment to the National Inpatient Survey data in the United States for years 1996-2012 to generate comorbidity-adjusted health care spending estimates for 154 causes of illness by age and sex. The primary diagnoses with the greatest number of comorbidities in the NIS dataset were acute renal failure, septicemia, and endocarditis. Hypertension, diabetes, and ischemic heart disease were the most common comorbidities across all age groups. After adjusting for comorbidities, chronic kidney diseases, atrial fibrillation and flutter, and chronic obstructive pulmonary disease increased by 74.1%, 40.9%, and 21.0%, respectively, while pancreatitis, lower respiratory infections, and septicemia decreased by 21.3%, 17.2%, and 16.0%. For many diseases, comorbidity adjustments had varying effects on spending for different age groups. Our methodology takes a unified approach to account for excess spending caused by the presence of comorbidities. Adjusting for comorbidities provides a substantially altered, more accurate estimate of the spending attributed to specific cause of illness. Making these adjustments supports improved resource tracking, accountability, and planning for future resource allocation.

Online Peer-to-Peer Communities in the Daily Lives of People With Chronic Illness: A Qualitative Systematic Review.

PubMed

Kingod, Natasja; Cleal, Bryan; Wahlberg, Ayo; Husted, Gitte R

2017-01-01

This qualitative systematic review investigated how individuals with chronic illness experience online peer-to-peer support and how their experiences influence daily life with illness. Selected studies were appraised by quality criteria focused upon research questions and study design, participant selection, methods of data collection, and methods of analysis. Four themes were identified: (a) illness-associated identity work, (b) social support and connectivity, (c) experiential knowledge sharing, and (d) collective voice and mobilization. Findings indicate that online peer-to-peer communities provide a supportive space for daily self-care related to chronic illness. Online communities provided a valued space to strengthen social ties and exchange knowledge that supported offline ties and patient-doctor relationships. Individuals used online communities to exchange experiential knowledge about everyday life with illness. This type of knowledge was perceived as extending far beyond medical care. Online communities were also used to mobilize and raise collective awareness about illness-specific concerns. © The Author(s) 2016.

Management of Chronic Kidney Disease Patients in the Intensive Care Unit: Mixing Acute and Chronic Illness.

PubMed

De Rosa, Silvia; Samoni, Sara; Villa, Gianluca; Ronco, Claudio

2017-01-01

Patients with chronic kidney disease (CKD) are at high risk for developing critical illness and for admission to intensive care units (ICU). 'Critically ill CKD patients' frequently develop an acute worsening of renal function (i.e. acute-on-chronic, AoC) that contributes to long-term kidney dysfunction, potentially leading to end-stage kidney disease (ESKD). An integrated multidisciplinary effort is thus necessary to adequately manage the multi-organ damage of those kidney patients and contemporaneously reduce the progression of kidney dysfunction when they are critically ill. The aim of this review is to describe (1) the pathophysiological mechanisms underlying the development of AoC kidney dysfunction and its role in the progression toward ESKD; (2) the most common clinical presentations of critical illness among CKD/ESKD patients; and (3) the continuum of care for CKD/ESKD patients from maintenance hemodialysis/peritoneal dialysis to acute renal replacement therapy performed in ICU and, vice-versa, for AoC patients who develop ESKD. © 2017 S. Karger AG, Basel.

The role of disease management programs in the health behavior of chronically ill patients.

PubMed

Cramm, Jane Murray; Adams, Samantha A; Walters, Bethany Hipple; Tsiachristas, Apostolos; Bal, Roland; Huijsman, Robbert; Rutten-Van Mölken, Maureen P M H; Nieboer, Anna Petra

2014-04-01

Investigate the effects of disease management program (DMP) implementation on physical activity, smoking, and physical quality of life among chronically ill patients. This study used a mixed-methods approach involving qualitative (35 interviews with project managers) and quantitative (survey of patients from 18 DMPs) data collection. Questionnaire response rates were 51% (2010; 2619/5108) at T0 and 47% (2011; 2191/4693) at T1. Physical activity and the percentage of smokers improved significantly over time, whereas physical quality of life declined. After adjusting for patients' physical quality of life at T0, age, educational level, marital status, and gender, physical activity at T0 (p<0.01), changes in physical activity (p<0.001), and percentage of smokers at T0 (p<0.05) predicted physical quality of life at T1. Project managers reported that DMPs improved patient-professional interaction. The ability to set more concrete targets improved patients' health behaviors. DMPs appear to improve physical activity among chronically ill patients over time. Furthermore, (changes in) health behavior are important for the physical quality of life of chronically ill patients. Redesigning care systems and implementing DMPs based on the chronic care model may improve health behavior among chronically ill patients. Copyright © 2014 The Authors. Published by Elsevier Ireland Ltd.. All rights reserved.

Musings on track: creative use of multiple disciplines to evaluate client needs.

PubMed

Kae-Je', Bert

2012-06-01

The author's concern about palliative care, the elderly and chronically ill is demonstrated by the creative utilization of a number of disciplines, Pastoral Counseling, Art Therapy, and Psychology in caring for clients. She shows how Maslow's Hierarchy can be used as a focused lens suggesting broader assessment of client needs that might enhance the interventional repertoire for mature students and more experienced creative clinicians in fields of Pastoral Counselling, CPE, Psychology, and Art Therapy.

Heart transplant centers with multidisciplinary team show a higher level of chronic illness management - Findings from the International BRIGHT Study.

PubMed

Cajita, Maan Isabella; Baumgartner, Eva; Berben, Lut; Denhaerynck, Kris; Helmy, Remon; Schönfeld, Sandra; Berger, Gabriele; Vetter, Christine; Dobbels, Fabienne; Russell, Cynthia L; De Geest, Sabina

The objectives of this study were to: (1) explore the proportion of HTx centers that have a multidisciplinary team and (2) assess the relationship between multidisciplinarity and the level of chronic illness management (CIM). The International Society for Heart and Lung Transplantation (ISHLT) recommends a multidisciplinary approach in heart transplant (HTx) follow-up care but little is known regarding the proportion of HTx centers that meet this recommendation and the impact on patient care. HTx centers with a multidisciplinary team may offer higher levels of CIM, a care model that has the potential to improve outcomes after HTx. We conducted a secondary analysis of the BRIGHT study, a cross-sectional study in 11 countries. Multidisciplinarity in the 36 HTx centers was assessed through HTx director reports and was defined as having a team that was composed of physician(s), nurse(s), and another healthcare professional (either a social worker, psychiatrist, psychologist, pharmacist, dietician, physical therapist, or occupational therapist). CIM was assessed with the Patient Assessment of Chronic Illness Care (PACIC). Multiple linear regression assessed the relationship between multidisciplinarity and the level of CIM. Twenty-nine (80.6%) of the HTx centers had a multidisciplinary team. Furthermore, multidisciplinarity was significantly associated with higher levels of CIM (β = 5.2, P = 0.042). Majority of the HTx centers follows the ISHLT recommendation for a multidisciplinary approach. Multidisciplinarity was associated with CIM and point toward a structural factor that needs to be in place for moving toward CIM. Copyright © 2017 Elsevier Inc. All rights reserved.

More effective and less expensive: lessons from five studies examining community approaches to care.

PubMed

Browne, G; Roberts, J; Gafni, A; Weir, R; Watt, S; Byrne, C

1995-11-01

Does the nature of community health services used by chronically ill clients and their caregivers have an impact on utilization of services, expenditure and well-being outcomes? A series of five studies, (four historic cohort and one randomized trial) examined clients suffering from a variety of chronic conditions in a number of community settings in different regions of Southern Ontario. Study sample composition and size varied. Each study was designed to quantify the well-being outcomes, and expenditure associated with different community approaches is covered under a nation-wide system of health insurance plans. As a collective, these studies represent increasing methodological rigor. Multiple-perspective client well-being outcome measures were used. Caregiver burden was also analyzed. A common approach to quantification and evaluation of expenditure for service consumption was applied across all five studies. The nature of community health services (proactive versus reactive approaches to care) was found to have direct and measurable impact on total expenditure for health service utilization and client well-being outcomes. A recurring pattern of lower expenditure for community health service utilization and equal or better client outcomes was associated with well-integrated proactive services when compared with individual fragmented, reactive approaches to care. The main lesson emerging from examining the five studies on approaches to community care is that it is as, or more, effective and less expensive to offer complete proactive health care services to chronically ill people in the early stages of their illness than to provide services on demand in a piecemeal manner.

Including Young Children With "New" Chronic Illnesses in an Early Childhood Education Setting.

ERIC Educational Resources Information Center

Fauvre, Mary

1988-01-01

Presents suggestions for successfully including young children with "new" life-threatening, chronic illnesses -- various types of cancer, heart, liver, and kidney diseases -- in early childhood education classes. (BB)

76 FR 74039 - Approaches to Reducing Sodium Consumption; Establishment of Dockets; Request for Comments, Data...

Federal Register 2010, 2011, 2012, 2013, 2014

2011-11-30

... and other chronic illnesses; sodium consumption practices; motivation and barriers in reducing sodium... role of sodium in hypertension and other chronic illnesses; sodium consumption practices; motivation...

The College Experience for Students with Chronic Illness: Implications for Academic Advising

ERIC Educational Resources Information Center

Houman, Katie M.; Stapley, Janice C.

2013-01-01

A purposive sample (2 males, 3 females) of students (aged 18-29 years) with chronic illness completed standardized measures and a semi-structured interview. Content analysis of the interview data revealed two themes: stress exacerbating symptoms of illness and a desire for a support group on campus. Viewed through the theory of emerging adulthood,…

Mind-Body Approaches and Chronic Illness: Status of Research

ERIC Educational Resources Information Center

Riccio, Cynthia A.; Pliego, Jessica; Rae, William A.

2016-01-01

An increasing number of children experience chronic health issues that affect their academic and behavioral functioning, as well as psychological well-being. At the same time, psychological stress can exacerbate the chronic illness. The first line of treatment most often is medical (e.g., pharmacology, surgery, radiation). Even when the medical…

Implementation of HIV Palliative Care: Interprofessional Education to Improve Patient Outcomes in Resource-Constrained Settings, 2004-2012.

PubMed

Alexander, Carla S; Pappas, Gregory; Amoroso, Anthony; Lee, Mei Ching; Brown-Henley, Yvonne; Memiah, Peter; O'Neill, Joseph F; Dix, Olivia; Redfield, Robert R

2015-09-01

Palliative care (PC), introduced early in the management of chronic illness, improves patient outcomes. Early integration of a palliative approach for persons with HIV has been documented to be effective in identifying and managing patient-level concerns over the past decade in African settings. The experience of implementing PC in multiple African and other resource-constrained settings (RCSs) emphasizes the need for essential palliative competencies that can be integrated with chronic disease management for patients and their families facing life-limiting illness. This article is an historical description of how basic palliative competencies were observed to be acceptable for health workers providing outpatient HIV care and treatment during eight years of U.S. implementation of "care and support," a term coined to represent PC for persons living with HIV in RCS. The need for team building and interprofessional education is highlighted. The model is currently being tested in one U.S. city and may represent a mechanism for expanding the palliative approach into management of chronic disease. Such competencies may play a role in the development of the patient-centered medical home, a critical component of U.S. health care reform. Copyright © 2015 American Academy of Hospice and Palliative Medicine. All rights reserved.

Providing Support to Relatives and Friends Managing Both Chronic Physical Illness and Depression: the Views of a National Sample of U.S. Adults

PubMed Central

Janevic, Mary; Rosland, Ann-Marie; Wiitala, Wyndy; Connell, Cathleen M; Piette, John D.

2012-01-01

Objective To describe how comorbid depression in chronically ill adults affects the willingness of their family and friends to provide them with illness management support. Methods We identified a national sample of U.S. adults (n=1027), all of whom had a close relative or friend with a chronic physical illness. We examined whether respondents were less willing to help their relatives/friends with disease management when they reported that these relatives/friends were also diagnosed with depression. Results In multivariate models, the odds of respondents being willing to provide disease-management support doubled when the relative/friend was depressed (adjusted odds ratio (AOR) = 1.99; 95% C.I=1.31, 3.02). Respondents were willing to perform an equal number of illness support tasks for relatives/friends with and without depression. However, respondents reported 30% more difficulties discussing health issues (incidence rate ratio (IRR)=1.30; 95% C.I=1.11,1.53), and 44% more barriers to providing support (IRR=1.44; 95% C.I=1.18, 1.75) to depressed relatives/friends. Conclusion U.S. adults are more willing to provide disease-management support for chronically ill relatives/friends with depression. However, helping depressed relatives/friends is also more challenging. Practice implications By providing resources for potential supporters, health providers could mobilize an important source of disease-management support for patients with chronic illness and depression. PMID:22748757

A Systematic Review of Loneliness and Common Chronic Physical Conditions in Adults

PubMed Central

Petitte, Trisha; Mallow, Jennifer; Barnes, Emily; Petrone, Ashley; Barr, Taura; Theeke, Laurie

2015-01-01

Loneliness is a prevalent and global problem for adult populations and has been linked to multiple chronic conditions in quantitative studies. This paper presents a systematic review of quantitative studies that examined the links between loneliness and common chronic conditions including: heart disease, hypertension, stroke, lung disease, and metabolic disorders. A comprehensive literature search process guided by the PRISMA statement led to the inclusion of 33 articles that measure loneliness in chronic illness populations. Loneliness is a significant biopsychosocial stressor that is prevalent in adults with heart disease, hypertension, stroke, and lung disease. The relationships among loneliness, obesity, and metabolic disorders are understudied but current research indicates that loneliness is associated with obesity and with psychological stress in obese persons. Limited interventions have demonstrated long-term effectiveness for reducing loneliness in adults with these same chronic conditions. Future longitudinal randomized trials that enhance knowledge of how diminishing loneliness can lead to improved health outcomes in persons with common chronic conditions would continue to build evidence to support the translation of findings to recommendations for clinical care. PMID:26550060

Housing and Food Insecurity, Care Access, and Health Status Among the Chronically Ill: An Analysis of the Behavioral Risk Factor Surveillance System.

PubMed

Charkhchi, Paniz; Fazeli Dehkordy, Soudabeh; Carlos, Ruth C

2018-05-01

The proportion of the United States population with chronic illness continues to rise. Understanding the determinants of quality of care-particularly social determinants-is critical to the provision of care in this population. To estimate the prevalence of housing and food insecurity among persons with common chronic conditions and to assess the independent effects of chronic illness and sociodemographic characteristics on (1) housing and food insecurity, and (2) health care access hardship and health status. Cross-sectional study. We used data from the 11 states and one territory that completed the social context module of the 2015 Behavioral Risk Factor Surveillance System (BRFSS). We estimated the prevalence of housing and food insecurity among patients with cancer, stroke, cardiovascular disease, and chronic lung disease. Logistic regression models were used to assess the independent effects of housing and food insecurity, chronic conditions, and demographics on health care access and health status. Among the chronically ill, 36.71% (95% CI: 35.54-37.88) experienced housing insecurity and 30.60% (95% CI: 29.49-31.71) experienced food insecurity. Cardiovascular and lung disease increased the likelihood of housing (OR 1.69, 95% CI: 1.07-2.66 and OR 1.71, 95% CI: 1.12-2.60, respectively) and food insecurity (OR 1.75, 95% CI: 1.12-2.73 and OR 1.78, 95% CI: 1.20-2.63, respectively). Housing and food insecurity significantly increased the risk of health care access hardship. Being insured or having an income level above 200% of the federal poverty level significantly reduced the likelihood of access hardship, while female gender significantly increased the likelihood. Chronic illness independently affects housing and food insecurity. In turn, food and housing anxiety leads to reduced access to care, likely due to cost concerns, and correlates with poorer health. A more complete understanding of the pathways by which chronic illness influences social determinants and clinical outcomes is needed.

Developing interventions for chronically ill patients: is coping a helpful concept?

PubMed

de Ridder, D; Schreurs, K

2001-03-01

In this review, the role of coping in the development of psychosocial interventions for chronically ill patients is discussed. After summarizing the theoretical issues involved in the translation of the coping concept into an intervention, a review is undertaken of 35 studies concerned with the impact of interventions aimed at improving coping on patients' quality of life. These studies concern seven different chronic disease types (AIDS, asthma, cancer, cardiovascular diseases, chronic pain, diabetes, and rheumatoid arthritis) and show explicit consideration of attempts to manage illness in terms of coping to be rare. Many studies nevertheless address the equivalent of coping, namely behaviors and/or cognitions intended to deal with an illness situation appraised as stressful. The results of these studies are encouraging, although largely limited to the improvement of one or two particular coping strategies and problem-focused strategies in particular. It is argued that in order to expand on these initially positive findings, greater and more explicit consideration should be given to the potential of the coping concept for intervention with the chronically ill. The appraisal of stressful situations, the use of coping resources, and the strategic application of particular coping strategies should, for example, be given more careful consideration.

Chronic stress and illness in children: the role of allostatic load.

PubMed

Johnston-Brooks, C H; Lewis, M A; Evans, G W; Whalen, C K

1998-01-01

Recent studies of stress have highlighted the contributions of chronic psychological and environmental stressors to health and well-being. Children may be especially vulnerable to the negative effects of chronic stressors. Allostasis, the body's ability to adapt and adjust to environmental demands, has been proposed as an explanatory mechanism for the stress-health link, yet empirical evidence is minimal. This study tested the proposition that allostasis may be an underlying physiological mechanism linking chronic stress to poor health outcomes in school-aged children. Specifically, we examined whether allostasis would mediate or moderate the link between chronic stress and health. To test the hypothesis that allostasis contributes to the relation between chronic stress and poor health, we examined household density as a chronic environmental stressor, cardiovascular reactivity (CVR) as a marker of allostatic load, and number of school absences due to illness as the health outcome in a sample of 81 boys. Structural equation modeling indicated that the mediating model fit the data well, accounting for 17% of the variance in days ill. Results provide the first evidence that CVR may mediate the relation between household density and medical illness in children. More generally, these findings support the role of allostasis as an underlying mechanism in the link between chronic stress and health.

Describing and analysing primary health care system support for chronic illness care in Indigenous communities in Australia's Northern Territory - use of the Chronic Care Model.

PubMed

Si, Damin; Bailie, Ross; Cunningham, Joan; Robinson, Gary; Dowden, Michelle; Stewart, Allison; Connors, Christine; Weeramanthri, Tarun

2008-05-28

Indigenous Australians experience disproportionately high prevalence of, and morbidity and mortality from chronic illness such as diabetes, renal disease and cardiovascular disease. Improving the understanding of how Indigenous primary care systems are organised to deliver chronic illness care will inform efforts to improve the quality of care for Indigenous people. This cross-sectional study was conducted in 12 Indigenous communities in Australia's Northern Territory. Using the Chronic Care Model as a framework, we carried out a mail-out survey to collect information on material, financial and human resources relating to chronic illness care in participating health centres. Follow up face-to-face interviews with health centre staff were conducted to identify successes and difficulties in the systems in relation to providing chronic illness care to community members. Participating health centres had distinct areas of strength and weakness in each component of systems: 1) organisational influence - strengthened by inclusion of chronic illness goals in business plans, appointment of designated chronic disease coordinators and introduction of external clinical audits, but weakened by lack of training in disease prevention and health promotion and limited access to Medicare funding; 2) community linkages - facilitated by working together with community organisations (e.g. local stores) and running community-based programs (e.g. "health week"), but detracted by a shortage of staff especially of Aboriginal health workers working in the community; 3) self management - promoted through patient education and goal setting with clients, but impeded by limited focus on family and community-based activities due to understaffing; 4) decision support - facilitated by distribution of clinical guidelines and their integration with daily care, but limited by inadequate access to and support from specialists; 5) delivery system design - strengthened by provision of transport for clients to health centres, separate men's and women's clinic rooms, specific roles of primary care team members in relation to chronic illness care, effective teamwork, and functional pathology and pharmacy systems, but weakened by staff shortage (particularly doctors and Aboriginal health workers) and high staff turnover; and 6) clinical information systems - facilitated by wide adoption of computerised information systems, but weakened by the systems' complexity and lack of IT maintenance and upgrade support. Using concrete examples, this study translates the concept of the Chronic Care Model (and associated systems view) into practical application in Australian Indigenous primary care settings. This approach proved to be useful in understanding the quality of primary care systems for prevention and management of chronic illness. Further refinement of the systems should focus on both increasing human and financial resources and improving management practice.

Self-management in heart failure: where have we been and where should we go?

PubMed Central

Gardetto, Nancy Jean

2011-01-01

Chronic conditions such as heart failure (HF) place a tremendous strain on patients, their families, the community, and the health care system because there are no real “cures”. Adding to the burden are longer life expectancies and increased numbers of people living with multiple chronic conditions. Today, whether engaging in a health-promoting activity, such as exercise, or living with a chronic disease such as HF, the individual is responsible for actively managing day-to-day activities, a concept referred to as self-management. Self-management emerged as the cornerstone for chronic care models and multidisciplinary disease-management strategies in chronic illness care. Moreover, self-management has been prioritized as a central pathway for improving the quality and effectiveness of most chronic HF care. Adherence to self-management is vital to optimize the treatment outcomes in HF patients, but implementing chronic disease self-management (CDSM) strategies and identifying the difficulties in self-management has proved to be a challenge. Understanding both where we have been and the future direction of self-management in HF care is not only timely, but a crucial aspect of improving long-term outcomes for people with HF and other chronic diseases. PMID:21544247

Effectiveness of neurofeedback therapy for anxiety and stress in adults living with a chronic illness: a systematic review protocol.

PubMed

Blaskovits, Farriss; Tyerman, Jane; Luctkar-Flude, Marian

2017-07-01

The objective of this review is to systematically examine the effectiveness of neurofeedback therapy for managing anxiety and stress in adults living with a chronic illness.The specific objectives are to identify which neurofeedback systems and/or protocols demonstrate effectiveness and determine the level of supporting evidence.The review question is as follows: What is the effectiveness of neurofeedback therapy for managing anxiety and stress in an adult population aged 18 years of age or older living with a chronic illness?

Chronic Illness Associated with Mold and Mycotoxins: Is Naso-Sinus Fungal Biofilm the Culprit?

PubMed Central

Brewer, Joseph H.; Thrasher, Jack D.; Hooper, Dennis

2013-01-01

It has recently been demonstrated that patients who develop chronic illness after prior exposure to water damaged buildings (WDB) and mold have the presence of mycotoxins, which can be detected in the urine. We hypothesized that the mold may be harbored internally and continue to release and/or produce mycotoxins which contribute to ongoing chronic illness. The sinuses are the most likely candidate as a site for the internal mold and mycotoxin production. In this paper, we review the literature supporting this concept. PMID:24368325

Chronic illness associated with mold and mycotoxins: is naso-sinus fungal biofilm the culprit?

PubMed

Brewer, Joseph H; Thrasher, Jack D; Hooper, Dennis

2013-12-24

It has recently been demonstrated that patients who develop chronic illness after prior exposure to water damaged buildings (WDB) and mold have the presence of mycotoxins, which can be detected in the urine. We hypothesized that the mold may be harbored internally and continue to release and/or produce mycotoxins which contribute to ongoing chronic illness. The sinuses are the most likely candidate as a site for the internal mold and mycotoxin production. In this paper, we review the literature supporting this concept.

Florence Nightingale: her Crimean fever and chronic illness.

PubMed

Dossey, Barbara M

2010-03-01

Florence Nightingale's Crimean fever and chronic illness have intrigued historians for more than a century and a half. The purpose of this article is threefold: (a) to discuss the facts that point to the cause of Nightingale's Crimean fever as brucellosis, (b) to show that her debilitating illness for 32 years (1855-1887) was compatible with the specific form of chronic brucellosis, and (c) to present new evidence that she was still having severe symptoms in December 1887, when it was previously felt that she had no severe symptoms after 1870.

Close relationships and the management of chronic illness: Associations and interventions.

PubMed

Martire, Lynn M; Helgeson, Vicki S

2017-09-01

Self-management of a chronic illness involves not only monitoring symptoms, adhering to medication regimens, and keeping medical appointments but also making and maintaining difficult lifestyle changes. This article highlights correlational and intervention research suggesting family members are influential in children's and adults' illness management. The argument is made that a dyadic approach to chronic illness management that targets the influence of close relationships may yield more sustainable effects on patient behavior than has been achieved in the past. In particular, dyadic approaches aimed at helping patients and family members to find ways to collaborate in goal setting for these behaviors is recommended. Such dyadic interventions may also benefit family members who are ill or are at risk because of poor health behaviors. (PsycINFO Database Record (c) 2017 APA, all rights reserved).

Say 'trouble's gone': chronic illness and employability in job training programmes.

PubMed

Tsui, Emma K

2013-01-01

The concept of biographical disruption has unique relevance for socioeconomically disadvantaged groups who participate in entry-level job training programmes. In these programmes trainees often suffer from various forms of chronic illness and must arrange these illnesses into a picture of employability. In this article I use ethnographic data and narrative analysis to examine closely two trainees' illness-related experiences, expressions and talk, and find that their ability to present their illnesses in ways that are consistent with programmatic goals is strongly influenced by family support, responsibilities and roles, as well as particular aspects of illness, like the interpretability of symptoms. I also find that the concept of biographical disruption has a curious traction in the world of job training, particularly among job training programme staff who would like to see trainees mobilise a variety of resources to help manage their illness. However, for trainees, many of whom have lived with chronic illness for years, the concept of biographical disruption may be more limited as a tool for understanding the experiences of illness. A more meaningful disruptive force in the lives of trainees appears to be the programme itself and the strategies for dealing with illness that programme staff may extend. © 2012 The Author. Sociology of Health & Illness © 2012 Foundation for the Sociology of Health & Illness/Blackwell Publishing Ltd.

Advance directives lessen the decisional burden of surrogate decision-making for the chronically critically ill.

PubMed

Hickman, Ronald L; Pinto, Melissa D

2014-03-01

To identify the relationships between advance directive status, demographic characteristics and decisional burden (role stress and depressive symptoms) of surrogate decision-makers (SDMs) of patients with chronic critical illness. Although the prevalence of advance directives among Americans has increased, SDMs are ultimately responsible for complex medical decisions of the chronically critically ill patient. Decisional burden has lasting psychological effects on SDMs. There is insufficient evidence on the influence of advance directives on the decisional burden of surrogate decision-makers of patients with chronic critical illness. The study was a secondary data analysis of cross-sectional data. Data were obtained from 489 surrogate decision-makers of chronically critically ill patients at two academic medical centres in Northeast Ohio, United States, between September 2005-May 2008. Data were collected using demographic forms and questionnaires. A single-item measure of role stress and the Center for Epidemiological Studies Depression (CESD) scale were used to capture the SDM's decisional burden. Descriptive statistics, t-tests, chi-square and path analyses were performed. Surrogate decision-makers who were nonwhite, with low socioeconomic status and low education level were less likely to have advance directive documentation for their chronically critically ill patient. The presence of an advance directive mitigates the decisional burden by directly reducing the SDM's role stress and indirectly lessening the severity of depressive symptoms. Most SDMs of chronically critically ill patients will not have the benefit of knowing the patient's preferences for life-sustaining therapies and consequently be at risk of increased decisional burden. Study results are clinically useful for patient education on the influence of advance directives. Patients may be informed that SDMs without advance directives are at risk of increased decisional burden and will require decisional support to facilitate patient-centred decision-making. © 2013 John Wiley & Sons Ltd.

College Freshmen with Chronic Illness: A Comparison with Healthy First-Year Students

ERIC Educational Resources Information Center

Herts, Kate L.; Wallis, Elizabeth; Maslow, Gary

2014-01-01

Over the past four decades, advances in medicine have decreased the mortality rates of many previously fatal chronic diseases. Children who would have died early in life are now living well into adulthood, and many are matriculating as college students. Data regarding the prevalence of chronic illness among college students, the college experience…

Differential Outcomes of Adolescents with Chronically Ill and Healthy Parents

ERIC Educational Resources Information Center

Sieh, Dominik Sebastian; Visser-Meily, Johanna Maria Augusta; Meijer, Anne Marie

2013-01-01

Approximately 10% of children grow up with a parent who has been diagnosed with a chronic medical condition (CMC) and seem to be at risk for adjustment difficulties. We examined differences in behavioral, psychosocial and academic outcomes between 161 adolescents from 101 families with a chronically ill parent and 112 adolescents from 68 families…

An index of the ratio of inflammatory to antiviral cell types mediates the effects of social adversity and age on chronic illness.

PubMed

Simons, Ronald L; Lei, Man-Kit; Beach, Steven R H; Barr, Ashley B; Cutrona, Carolyn E; Gibbons, Frederick X; Philibert, Robert A

2017-07-01

It is assumed that both social stress and chronological age increase the risk of chronic illness, in part, through their effect on systemic inflammation. Unfortunately, observational studies usually employ single-marker measures of inflammation (e.g., Interleukin-6, C-reactive protein) that preclude strong tests for mediational effects. The present study investigated the extent to which the effects of socioeconomic disadvantage and age on onset of chronic illness is mediated by dominance of the innate (inflammatory) over the acquired (antiviral) components of the immune system. We assessed inflammation using the ratio of inflammatory to antiviral cell types (ITACT Ratio). This approach provided a stronger test of evolutionary arguments regarding the effect of social stress on chronic inflammation than is the case with cytokine measures, and afforded an opportunity to replicate findings obtained utilizing mRNA. We used structural equation modeling and longitudinal data from a sample of 100 middle-age African American women to perform our analyses. Dominance of inflammatory over antiviral cell activity was associated with each of the eight illnesses included in our chronic illness measure. Both socioeconomic disadvantage and age were also associated with inflammatory dominance. Pursuant to the central focus of the study, the effects of socioeconomic adversity and age on increased illness were mediated by our measure of inflammatory dominance. The indirect effect of these variables through inflammatory cell profile was significant, with neither socioeconomic disadvantage nor age showing a significant association with illness once the impact of inflammatory cell profile was taken into account. First, the analysis provides preliminary validation of a new measure of inflammation that is calculated based on the ratio of inflammatory to antiviral white blood cells. Second, our results support the hypothesis that socioeconomic disadvantage and chronological age increase risk for chronic illness in part through their effect on inflammatory processes. Copyright © 2017 Elsevier Ltd. All rights reserved.

Canada's Compassionate Care Benefit: views of family caregivers in chronic illness.

PubMed

Williams, Allison; Crooks, Valorie A; Stajduhar, Kelli I; Allan, Diane; Cohen, S Robin

2006-09-01

Based on a pilot evaluation of Canada's recently introduced Compassionate Care Benefit (CCB), the purpose of this paper is to highlight the experiences of family caregivers caring for people with non-malignant advanced chronic illness. Using Patton's (1997) utilization-focused evaluation approach, 25 telephone interviews were conducted with three groups of family caregivers: those who had successfully applied for the CCB; those who were unsuccessful in their applications; those who had never applied for the benefit. The CCB has a number of limitations, particularly for caregivers of patients diagnosed with non-malignant advanced chronic illness. The central limitations are: difficulties associated with accurate prognostication; limited definition of "family member"; insufficient length of the funding period. By modelling similar programmes internationally, such as those in Sweden, Norway, and the Netherlands, Canada would likely find the CCB to have greater relevance and accessibility to Canadian caregivers, particularly those caring for people with non-malignant advanced chronic illness.

Child Attitude Toward Illness Scale (CATIS): A systematic review of the literature.

PubMed

Ramsey, Rachelle R; Ryan, Jamie L; Fedele, David A; Mullins, Larry L; Chaney, John M; Wagner, Janelle L

2016-06-01

The objective of this study was to systematically review the literature utilizing the Child Attitude Toward Illness Scale (CATIS) as a measure of illness attitudes within pediatric chronic illness, including epilepsy, and provide recommendations for its use. This review includes an examination of the psychometric properties of the CATIS and the relationship between the CATIS and psychological, academic, behavioral, and illness variables. Electronic searches were conducted using Medline and PsychINFO to identify twenty-two relevant publications. The CATIS was identified as a reliable and valid self-report assessment tool across chronic illnesses, including pediatric epilepsy. Although originally developed for children ages 8-12, the CATIS has demonstrated reliability and validity in youth ages 8-22. The CATIS scores were reliably associated with cognitive appraisal variables and internalizing symptoms. Initial support exists for the relation between illness attitudes and externalizing behavior, academic functioning, and psychosocial care needs. Mixed findings were reported with regard to the relation between illness attitudes and demographic and disease variables, as well as both social and family functioning. The CATIS is a psychometrically sound self-report instrument for measuring illness attitudes and demonstrates clinical utility for examining adjustment outcomes across chronic illnesses, particularly pediatric epilepsy. Copyright © 2016 Elsevier Inc. All rights reserved.

Applying a coping with stress questionnaire for cancer patients to patients with non-cancer chronic illnesses.

PubMed

Orive, Miren; Quintana, Jose M; Vrotsou, Kalliopi; Las Hayas, Carlota; Bilbao, Amaia; Barrio, Irantzu; Matellanes, Begoña; Padierna, Jesús A

2013-06-01

One of the few instruments to evaluate coping skills among patients with chronic illnesses is the Cuestionario de Afrontamiento al Estrés para Pacientes Oncológicos (CAEPO), created initially for cancer patients. We evaluate how well CAEPO applies to patients with non-cancer chronic illnesses. A total of 344 patients (115 with chronic hepatitis C, 120 with inflammatory bowel disease and 109 with recurrent vertigo) completed the CAEPO. Exploratory factor analysis and Cronbach's alpha provide only partial support for the seven factors suggested by the original CAEPO. A streamlined version with fewer dimensions and items may be a better solution for identifying coping strategies among these patients.

Gratitude uniquely predicts lower depression in chronic illness populations: A longitudinal study of inflammatory bowel disease and arthritis.

PubMed

Sirois, Fuschia M; Wood, Alex M

2017-02-01

Although gratitude has been identified as a key clinically relevant trait for improving well-being, it is understudied within medical populations. The current study addressed this gap and extended previous and limited cross-sectional research by examining the longitudinal associations of gratitude to depression in 2 chronic illness samples, arthritis and inflammatory bowel disease (IBD). Two chronic illness samples, arthritis (N = 423) and IBD (N = 427), completed online surveys at Time 1 (T1). One hundred sixty-three people with arthritis and 144 people with IBD completed the 6-month follow-up survey (T2). Depression, gratitude, illness cognitions, perceived stress, social support, and disease-related variables were assessed at T1 and T2. At T2, 57.2% of the arthritis sample and 53.4% of the IBD sample met the cut off scores for significant depression. T1 gratitude was negatively associated with depressive symptoms at T1 and T2 in both samples (rs from -.43 to -.50). Regression analyses revealed that T1 gratitude remained a significant and unique predictor of lower T2 depression after controlling for T1 depression, relevant demographic variables, illness cognitions, changes in illness-relevant variables, and another positive psychological construct, thriving, in both samples. As the first investigation of the longitudinal associations of gratitude to psychological well-being in the context of chronic illness, the current study provides important evidence for the relevance of gratitude for health-related clinical populations. Further intervention-based research is warranted to more fully understand the potential benefits of gratitude for adjustment to chronic illness. (PsycINFO Database Record (c) 2017 APA, all rights reserved).

Views on a brief mindfulness intervention among patients with long-term illness.

PubMed

Howarth, Ana; Perkins-Porras, Linda; Copland, Claire; Ussher, Michael

2016-11-15

Chronic illness is the leading cause of death in the UK and worldwide. Psychological therapies to support self-management have been shown to play an important role in helping those with chronic illness cope; more recently, the therapeutic benefits of mindfulness approaches have become evident for managing depression and other distressing emotions. Brief guided mindfulness interventions, are more convenient than intensive traditional programmes requiring regular attendance but have been less explored. This study assessed views on a brief (i.e., 10 min) mindfulness intervention for those with specific long-term illnesses. Semi-structured interviews and focus groups were conducted with chronic illness patient groups (i.e., chronic obstructive pulmonary disease, chronic pain and cardiovascular disease), designed to capture the acceptability and feasibility of the intervention. The interviews were conducted after use of a mindfulness based audio in clinic and, one week later, after use in the patient's own environment. Interviews were recorded, transcribed and analysed using thematic analysis. In total, a combination of 18 interviews and focus groups were conducted among 14 patients. Recruitment was most successful with chronic pain patients. All patients reported benefits such as feelings of relaxation and improved coping with symptoms. While the wording and content of the audio were generally well received, it was suggested that the length could be increased, as it felt rushed, and that more guidance about the purpose of mindfulness, and when to use it, was needed. A brief mindfulness intervention was well accepted among patients with long-term illness. The intervention may benefit by being lengthened and by offering further guidance on its use.

Disease-management partnership functioning, synergy and effectiveness in delivering chronic-illness care.

PubMed

Cramm, Jane Murray; Nieboer, Anna Petra

2012-06-01

This study explored associations among disease-management partnership functioning, synergy and effectiveness in the delivery of chronic-illness care. This study had a cross-sectional design. The study sample consists of 218 professionals (out of 393) participating in 22 disease-management partnerships in various regions of the Netherlands. We assessed the relationships among partnership functioning, synergy and effectiveness in the delivery of chronic-illness care. Partnership functioning was assessed through leadership, resources, administration and efficiency. Synergy was considered the proximal outcome of partnership functioning, which, in turn, influenced the effectiveness of disease-management partnerships [measured with the Assessment of Chronic Illness Care (ACIC) survey instrument]. Overall ACIC scores ranged from 3 to 10, indicating basic/intermediate to optimal/comprehensive delivery of chronic-illness care. The results of the regression analysis demonstrate that partnership effectiveness was positively associated with leadership (β = 0.25; P≤ 0.01), and resources (β = 0.31; P≤ 0.001). No significant relationship was found between administration, efficiency and partnership effectiveness. Partnership synergy acted as a mediator for partnership functioning and was statistically significantly associated with partnership effectiveness (β = 0.25; P≤ 0.001). Disease-management partnerships seemed better able to deliver higher levels of chronic-illness care when synergy is created between partners. Synergy was more likely to emerge with boundary-spanning leaders who understood and appreciated partners' different perspectives, could bridge their diverse cultures and were comfortable sharing ideas, resources and power. In addition, the acknowledgement of and ability to use members' resources are valuable in engaging partners' involvement and achieving synergy in disease-management partnerships.

Care of the Chronically Ill at Home: An Unresolved Dilemma in Health Policy for the United States

PubMed Central

Buhler-Wilkerson, Karen

2007-01-01

The problems of caring for patients with disabling illnesses who neither get well nor die are not new. Such patients have always required assistance at home from family, benevolent volunteers, or paid caregivers. Despite two centuries of experimentation, however, no agreement exists concerning the balance between the public and private resources to be allocated through state funding, private insurance, and family contributions for the daily and routine care at home for chronically ill persons of all ages. This article examines these issues and the unavoidable tensions between fiscal reality and legitimate need. It also uses historical and policy analyses to explain why home care has never become the cornerstone for caring for the chronically ill. PMID:18070332

Dimensions of Phenomenology in Exploring Patient’s Suffering in Long-Life Illnesses

PubMed Central

Al Kalaldeh, Mahmoud; Shosha, Ghada Abu; Saiah, Najah; Salameh, Omar

2017-01-01

Background: Patients’ suffering has been increasingly investigated by health-care researchers especially in the chronically ill. Suffering is viewed as a progressive negative consequence that associated with pain, impaired self-esteem, and social alienation. This qualitative evidence synthesis aimed to provide further insights into the application of phenomenology in explaining suffering among patients with chronic illnesses. Methods: Studies included in this qualitative evidence synthesis study were retrieved by searching from the following electronic databases: CINAHL, PubMed Central, and EBSCO. Findings: Phenomenology is regarded as influential to generate in-depth evidence about suffering that are grounded in chronically ill patients’ perspectives. The philosophical constructs of suffering suggested fundamental dimensions such as stress, distress, hopelessness, and depression along with pain. Evidence encompasses the entire manifestation of suffering in which all interrelated meanings are understood and referred to a unique structure. Hermeneutic phenomenology was adopted as an effective strategy to elucidate human experience leading to the discovery of the embedded meanings of life experience. Conclusion: The phenomenological approach provides nursing research with the pathway to explore patients’ suffering experiences in the chronically ill. PMID:29582010

Narcissistic rage: The Achilles’ heel of the patient with chronic physical illness

PubMed Central

Hyphantis, Thomas; Almyroudi, Augustina; Paika, Vassiliki; Goulia, Panagiota; Arvanitakis, Konstantinos

2009-01-01

Based on the psychoanalytic reading of Homer’s Iliad whose principal theme is “Achilles’ rage” (the semi-mortal hero invulnerable in all of his body except for his heel, hence “Achilles’ heel” has come to mean a person’s principal weakness), we aimed to assess whether “narcissistic rage” has an impact on several psychosocial variables in patients with severe physical illness across time. In 878 patients with cancer, rheumatological diseases, multiple sclerosis, inflammatory bowel disease, and glaucoma, we assessed psychological distress (SCL-90 and GHQ-28), quality of life (WHOQOL-BREF), interpersonal difficulties (IIP-40), hostility (HDHQ), and defense styles (DSQ). Narcissistic rage comprised DSQ “omnipotence” and HDHQ “extraverted hostility”. Hierarchical multiple regressions analyses were performed. We showed that, in patients with disease duration less than one year, narcissistic rage had a minor impact on psychosocial variables studied, indicating that the rage was rather part of a “normal” mourning process. On the contrary, in patients with longer disease duration, increased rates of narcissistic rage had a great impact on all outcome variables, and the opposite was true for patients with low rates of narcissistic rage, indicating that narcissistic rage constitutes actually an “Achilles’ Heel” for patients with long-term physical illness. These findings may have important clinical implications. PMID:19936167

Do Flexible Goal Adjustment and Acceptance Help Preserve Quality of Life in Patients with Multiple Sclerosis?

PubMed

Van Damme, Stefaan; De Waegeneer, Annelies; Debruyne, Jan

2016-06-01

Goal regulation strategies such as flexible goal adjustment and acceptance are believed to be protective factors in persons with chronic illness, but research on their relative contributions to quality of life in multiple sclerosis (MS) is lacking. We aimed to test the idea that acceptance and flexible goal adjustment (in contrast to tenacious goal pursuit) may help preserve the quality of life in persons with MS. A sample of 117 patients with MS was recruited. They completed questionnaires measuring quality of life (physical functioning, psychological distress), acceptance, flexible goal adjustment, and tenacious goal pursuit. Acceptance significantly accounted for variance in all three indexes of quality of life, beyond the effects of demographic and illness characteristics. The role of goal regulation style was less clear. Flexible goal adjustment significantly accounted for psychological well-being only. Surprisingly, tenacious goal pursuit predicted better psychological functioning and less psychological distress. No support was found for the hypothesis that acceptance and flexible goal adjustment would moderate the relation between illness severity and quality of life. The findings suggest the potential importance of acceptance in understanding MS patients' quality of life, although its hypothesized protective function could not be confirmed. Further conceptual work on acceptance and goal regulation style is needed, as well as prospective work investigating their causal status.

From Controlling to Letting Go: What Are the Psychosocial Needs of Parents of Adolescents with a Chronic Illness?

ERIC Educational Resources Information Center

Akre, Christina; Suris, Joan-Carles

2014-01-01

While one of the main objectives of adolescence is to achieve autonomy, for the specific population of adolescents with a chronic illness (CI), the struggle for autonomy is accentuated by the limits implied by their illness. However, little is known concerning the way their parents manage and cope with their children's autonomy acquisition.…

Paradigms for investigating rehabilitation and adaptation to childhood disability and chronic illness.

PubMed

Harper, D C

1991-10-01

Significant research perspectives in investigating chronic illness and disability are presented. Historical research conceptualizations in childhood disability are reviewed and newer contexts for evaluating disorder are presented. Future research in childhood illness and disability is directed toward basing investigations on theoretical models and promoting prospective longitudinal programs. Pediatric psychologists are encouraged to consider more collaborative efforts to move the field forward systematically.

Patient- and family-centered performance measures focused on actionable processes of care for persistent and chronic critical illness: protocol for a systematic review.

PubMed

Rose, Louise; Istanboulian, Laura; Allum, Laura; Burry, Lisa; Dale, Craig; Hart, Nicholas; Kydonaki, Claire; Ramsay, Pam; Pattison, Natalie; Connolly, Bronwen

2017-04-17

Approximately 5 to 10% of critically ill patients transition from acute critical illness to a state of persistent and in some cases chronic critical illness. These patients have unique and complex needs that require a change in the clinical management plan and overall goals of care to a focus on rehabilitation, symptom relief, discharge planning, and in some cases, end-of-life care. However, existing indicators and measures of care quality, and tools such as checklists, that foster implementation of best practices, may not be sufficiently inclusive in terms of actionable processes of care relevant to these patients. Therefore, the aim of this systematic review is to identify the processes of care, performance measures, quality indicators, and outcomes including reports of patient/family experience described in the current evidence base relevant to patients with persistent or chronic critical illness and their family members. Two authors will independently search from inception to November 2016: MEDLINE, Embase, CINAHL, Web of Science, the Cochrane Library, PROSPERO, the Joanna Briggs Institute and the International Clinical Trials Registry Platform. We will include all study designs except case series/reports of <10 patients describing their study population (aged 18 years and older) using terms such as persistent critical illness, chronic critical illness, and prolonged mechanical ventilation. Two authors will independently perform data extraction and complete risk of bias assessment. Our primary outcome is to determine actionable processes of care and interventions deemed relevant to patients experiencing persistent or chronic critical illness and their family members. Secondary outcomes include (1) performance measures and quality indicators considered relevant to our population of interest and (2) themes related to patient and family experience. We will use our systematic review findings, with data from patient, family member and clinician interviews, and a subsequent consensus building process to inform the development of quality metrics and tools to measure processes of care, outcomes and experience for patients experiencing persistent or chronic critical illness and their family members. PROSPERO CRD42016052715.

Illness perception in Chinese adults with epilepsy.

PubMed

Ji, Haixia; Zhang, Lei; Li, Lunlan; Gong, Guiping; Cao, Zhaolun; Zhang, Jianfeng; Zhou, Nong; Wang, Yu; Tu, Houmian; Wang, Kai

2016-12-01

Epilepsy is among the most common neurological disorders worldwide. Understanding the patient's subjective experience plays an important role in the treatment and rehabilitation of the patient. However, few studies are concerned about the illness perception of Chinese adults with epilepsy. 117 Chinese adults with epilepsy and 87 Chinese adults with chronic liver disease completed the Chinese version of the Revised Illness Perception Questionnaire (CIPQ-R). The Chinese epilepsy patients also completed the Social Support Rating Scale (SSRS) and Simplified Coping Style Questionnaire (SCSQ). A comparison about CIPQ-R score between the epilepsy group and chronic liver group was conducted using the independent sample t test. Partial correlation coefficients were calculated among the eight subscales of the CIPQ-R and its associated factors. Results for the CIPQ-R indicated that both the epilepsy patients and the chronic liver disease patients had a moderate belief in their personal control and treatment control over their disorder. Consistent with our hypothesis, patients with epilepsy and those with chronic liver disease perceived their respective disease similarly in terms of timeline and illness coherence. However, epilepsy patients had a higher negative emotional representations level than that we expected when compared to those of the patients suffering from chronic liver disease. Partial correlation analysis in Chinese epilepsy patients showed that the timeline acute/chronic dimension and emotional representations dimension were closely related to the other dimensions of illness perception. Moreover, the illness perception of the patients was significantly associated with social support, coping style, duration of epilepsy, seizure frequency, and the number of antiepileptic drugs. Chinese patients with epilepsy had limited understanding of the illness, and poor belief in personal control and treatment control. They had a negative emotional response to their illness, and feared of the effects on the patient or patient's family. Social support, coping style, duration of epilepsy, seizure frequency, and the number of antiepileptic drugs could affect the illness perception of these patients. Further studies should focus on how to improve patients' attitudes towards their disease. Copyright © 2016 Elsevier B.V. All rights reserved.

ProFUSO: Business process and ontology-based framework to develop ubiquitous computing support systems for chronic patients' management.

PubMed

Jimenez-Molina, Angel; Gaete-Villegas, Jorge; Fuentes, Javier

2018-06-01

New advances in telemedicine, ubiquitous computing, and artificial intelligence have supported the emergence of more advanced applications and support systems for chronic patients. This trend addresses the important problem of chronic illnesses, highlighted by multiple international organizations as a core issue in future healthcare. Despite the myriad of exciting new developments, each application and system is designed and implemented for specific purposes and lacks the flexibility to support different healthcare concerns. Some of the known problems of such developments are the integration issues between applications and existing healthcare systems, the reusability of technical knowledge in the creation of new and more sophisticated systems and the usage of data gathered from multiple sources in the generation of new knowledge. This paper proposes a framework for the development of chronic disease support systems and applications as an answer to these shortcomings. Through this framework our pursuit is to create a common ground methodology upon which new developments can be created and easily integrated to provide better support to chronic patients, medical staff and other relevant participants. General requirements are inferred for any support system from the primary attention process of chronic patients by the Business Process Management Notation. Numerous technical approaches are proposed to design a general architecture that considers the medical organizational requirements in the treatment of a patient. A framework is presented for any application in support of chronic patients and evaluated by a case study to test the applicability and pertinence of the solution. Copyright © 2018 Elsevier Inc. All rights reserved.

The Effects of Multiple Chronic Conditions on Adult Patient Readmissions and Hospital Finances: A Management Case Study

PubMed Central

Mihailoff, Michael; Deb, Shreyasi; Lee, James A.; Lynn, Joanne

2017-01-01

Medicare and other payers have launched initiatives to reduce hospital utilization, especially targeting readmissions within 30 days of discharge. Hospital managers have traditionally contended that hospitals would prosper better by ignoring the penalties for high readmission rates and keeping the beds more full. We aimed to test the financial effects of admissions and readmissions by persons with and without specified chronic conditions in one regional hospital. This is a management case study with a descriptive brief report. This study was conducted at Winchester Memorial Hospital, a general hospital in a largely rural area of Virginia, 2010-2015. The total margin per admission varied by diagnosis, with the average patient diagnosed with chronic obstructive pulmonary disease, heart failure, pneumonia, or chronic renal disease having negative margins. The largest per-patient losses were in diagnostic categories coinciding with the highest readmission rates. The margin declined into substantial losses with an increasing number of chronic conditions, which also corresponded with higher readmission rates. Patients with 5 or more clinical conditions had highest risk of readmission within 30 days (24.8%) and had an average total loss of $865 per admission in 2015. The adverse financial effects worsened between 2010 and 2015. This hospital might improve its finances by investing in strategies to reduce chronic illness hospitalizations, especially those with multiple chronic conditions and high risk of readmission. These findings counter the common claim that the hospital would do better to fill beds rather than to work on efficient utilization. Other hospitals could replicate these analyses to understand their situations. PMID:28863719

Facilitating job retention for chronically ill employees: perspectives of line managers and human resource managers

PubMed Central

2011-01-01

Background Chronic diseases are a leading contributor to work disability and job loss in Europe. Recent EU policies aim to improve job retention among chronically ill employees. Disability and occupational health researchers argue that this requires a coordinated and pro-active approach at the workplace by occupational health professionals, line managers (LMs) and human resource managers (HRM). Little is known about the perspectives of LMs an HRM on what is needed to facilitate job retention among chronically ill employees. The aim of this qualitative study was to explore and compare the perspectives of Dutch LMs and HRM on this issue. Methods Concept mapping methodology was used to elicit and map statements (ideas) from 10 LMs and 17 HRM about what is needed to ensure continued employment for chronically ill employees. Study participants were recruited through a higher education and an occupational health services organization. Results Participants generated 35 statements. Each group (LMs and HRM) sorted these statements into six thematic clusters. LMs and HRM identified four similar clusters: LMs and HRM must be knowledgeable about the impact of chronic disease on the employee; employees must accept responsibility for work retention; work adaptations must be implemented; and clear company policy. Thematic clusters identified only by LMs were: good manager/employee cooperation and knowledge transfer within the company. Unique clusters identified by HRM were: company culture and organizational support. Conclusions There were both similarities and differences between the views of LMs and HRM on what may facilitate job retention for chronically ill employees. LMs perceived manager/employee cooperation as the most important mechanism for enabling continued employment for these employees. HRM perceived organizational policy and culture as the most important mechanism. The findings provide information about topics that occupational health researchers and planners should address in developing job retention programs for chronically ill workers. PMID:21586139

Facilitating job retention for chronically ill employees: perspectives of line managers and human resource managers.

PubMed

Haafkens, Joke A; Kopnina, Helen; Meerman, Martha G M; van Dijk, Frank J H

2011-05-17

Chronic diseases are a leading contributor to work disability and job loss in Europe. Recent EU policies aim to improve job retention among chronically ill employees. Disability and occupational health researchers argue that this requires a coordinated and pro-active approach at the workplace by occupational health professionals, line managers (LMs) and human resource managers (HRM). Little is known about the perspectives of LMs an HRM on what is needed to facilitate job retention among chronically ill employees. The aim of this qualitative study was to explore and compare the perspectives of Dutch LMs and HRM on this issue. Concept mapping methodology was used to elicit and map statements (ideas) from 10 LMs and 17 HRM about what is needed to ensure continued employment for chronically ill employees. Study participants were recruited through a higher education and an occupational health services organization. Participants generated 35 statements. Each group (LMs and HRM) sorted these statements into six thematic clusters. LMs and HRM identified four similar clusters: LMs and HRM must be knowledgeable about the impact of chronic disease on the employee; employees must accept responsibility for work retention; work adaptations must be implemented; and clear company policy. Thematic clusters identified only by LMs were: good manager/employee cooperation and knowledge transfer within the company. Unique clusters identified by HRM were: company culture and organizational support. There were both similarities and differences between the views of LMs and HRM on what may facilitate job retention for chronically ill employees. LMs perceived manager/employee cooperation as the most important mechanism for enabling continued employment for these employees. HRM perceived organizational policy and culture as the most important mechanism. The findings provide information about topics that occupational health researchers and planners should address in developing job retention programs for chronically ill workers.

[Self esteem of chronically ill children and adolescence exemplified by obesity and congenital heart defect].

PubMed

Sticker, Elisabeth; Schmidt, Claudia; Steins, Gisela

2003-01-01

Coping with a chronic illness challenges children and adolescents in addition to their normal developmental tasks. This double challenge probably endangers the development of a stable self-esteem. The present investigation explores the possibility whether these processes are different with respect to the kind of illness. Chronic illnesses such as obesity and congenital heart defects (CHD) serve as examples in comparing two samples (8-16 years): obesity (N = 54) as visible and partly controllable illness (with respect to the course of illness) vs. congenital heart disease (N = 56) as invisible and uncontrollable illness (with respect to the origin and course of illness). Self-esteem is measured by a scale (ALS) which focuses on the public areas "school" and "leisure time" and the private area "family". Children and adolescents with CHD (especially females) display an above-average positive self-esteem in all areas. Children and adolescents with obesity mainly display an average self-esteem, the females scoring above-average for the private area "family", the males scoring below-average for the public area "leisure time". Furthermore, leisure-time related self-esteem is significantly lower for obese than for CHD subjects. These specific relations implicate differential accentuations for intervention programs.

A Comparison of Guilt in Bereaved Parents Whose Children Died by Suicide, Accident, or Chronic Disease.

ERIC Educational Resources Information Center

Miles, Margaret Shandor; Demi, Alice Sterner

1992-01-01

Compared guilt experiences of parents (n=132) whose children (aged 1-36) died by suicide, accident, or chronic illness. Guilt was reported by 92 percent of suicide bereaved parents, 78 percent of accident bereaved parents, and 71 percent of chronic disease bereaved parents. Six sources of guilt (Death Causation, Illness-Related, Childrearing,…

A Photo Elicitation Study on Chronically Ill Adolescents’ Identity Constructions During Transition

PubMed Central

Hanghøj, Signe; Boisen, Kirsten A.; Schmiegelow, Kjeld; Hølge-Hazelton, Bibi

2016-01-01

Adolescence is an important phase of life with increasing independence and identity development, and a vulnerable period of life for chronically ill adolescents with a high occurrence of insufficient treatment adherence. We conducted four photo elicitation focus group interviews with 14 adolescents (12-20 years) with juvenile idiopathic arthritis to investigate identity constructions during transition. Using a discourse analysis approach, six identity types were identified distributed on normal and marginal identities, which were lived either at home (home arena) or outside home with peers (out arena). Most participants positioned themselves as normal in the out arena and as ill in the home arena. Few participants positioned themselves as ill in an out arena, and they described how peers perceived this as a marginal and skewed behavior. This study contributes to a better understanding of why it can be extremely difficult to live with a chronic illness during adolescence. PMID:28462329

Sickle Cell Disease: An Opportunity for Palliative Care across the Life Span

PubMed Central

Johnson, Bonnye; Mack, A. Kyle; Labotka, Richard; Molokie, Robert E.

2010-01-01

Sickle cell disease is a chronic illness that impacts patients physically and emotionally and can do so at an early age. An ecological model of palliative care that involves improved communication among the health care team, patients, and their families can be beneficial. Open and honest communication regarding advance care planning, disease management, relief of pain and other symptoms, and bereavement and grief are all important for the patient, family, and health care team. Given the multiple acute and chronic complications of sickle cell disease, an approach to care that is holistic and comprehensive may help to improve a patient’s biological function and the perceived health, functional status, and quality of life of the patient and family. PMID:20804884

Adaptive Leadership Framework for Chronic Illness

PubMed Central

Anderson, Ruth A.; Bailey, Donald E.; Wu, Bei; Corazzini, Kirsten; McConnell, Eleanor S.; Thygeson, N. Marcus; Docherty, Sharron L.

2015-01-01

We propose the Adaptive Leadership Framework for Chronic Illness as a novel framework for conceptualizing, studying, and providing care. This framework is an application of the Adaptive Leadership Framework developed by Heifetz and colleagues for business. Our framework views health care as a complex adaptive system and addresses the intersection at which people with chronic illness interface with the care system. We shift focus from symptoms to symptoms and the challenges they pose for patients/families. We describe how providers and patients/families might collaborate to create shared meaning of symptoms and challenges to coproduce appropriate approaches to care. PMID:25647829

[HIV infection in France in 2012: reality, risks and challenges for a chronic multisystem disease].

PubMed

Blot, M; Piroth, L

2012-06-01

Thirty years after the discovery of HIV and 15 years since the advent of Highly Active Antiretroviral Therapy (HAART), the features of HIV infection have evolved and need a new approach, which is both more comprehensive and specialized. Indeed, the burden of a chronic disease with multiple determining features has replaced the rapidly fatal infection of the past, which was almost exclusively related to the effects of immunosuppression. Physicians have to be concerned with "new risks" associated with treatment side effects; the consequences of ongoing inflammation and ageing of the HIV-infected population. These include metabolic, cardiovascular, neurocognitive and renal disease as well as lipodystrophy and malignancy. Antiretroviral treatment has been a major step forward, subject to accessibility, tolerance and adherence, but it has not solved all the problems associated with this infection, as it becomes a chronic illness. Copyright © 2012 SPLF. Published by Elsevier Masson SAS. All rights reserved.

An Adult Case of Chronic Active Epstein-Barr Virus Infection with Interstitial Pneumonitis

PubMed Central

Joo, Eun-Jeong; Ha, Young Eun; Jung, Dong Sik; Cheong, Hae Suk; Wi, Yu Mi; Song, Jae-Hoon

2011-01-01

Chronic active Epstein-Barr virus (CAEBV) infection is characterized by persistent infectious mononucleosis-like symptoms, an unusual pattern of Epstein-Barr virus (EBV) antibodies, detection of the EBV genome in affected tissues or peripheral blood, and chronic illness that cannot be attributed to any other known disease. This is the first reported Korean case of an immunocompetent adult with CAEBV-associated interstitial pneumonitis. A 28-year-old female was admitted with a fever that persisted for 3 weeks. She had multiple lymphadenopathy, hepatosplenomegaly, pancytopenia, and elevated serum aminotransferase levels. Serology for antibodies was positive and chest computed tomography showed diffuse ground glass opacities in both lungs. Histopathology of the lung tissue showed lymphocyte infiltration, and EBV DNA was detected in those lymphocytes using in situ hybridization with an EBV-encoded RNA probe. After 1 month of hospitalization, she improved without specific treatment. PMID:22205850

An adult case of chronic active Epstein-Barr virus infection with interstitial pneumonitis.

PubMed

Joo, Eun-Jeong; Ha, Young Eun; Jung, Dong Sik; Cheong, Hae Suk; Wi, Yu Mi; Song, Jae-Hoon; Peck, Kyong Ran

2011-12-01

Chronic active Epstein-Barr virus (CAEBV) infection is characterized by persistent infectious mononucleosis-like symptoms, an unusual pattern of Epstein-Barr virus (EBV) antibodies, detection of the EBV genome in affected tissues or peripheral blood, and chronic illness that cannot be attributed to any other known disease. This is the first reported Korean case of an immunocompetent adult with CAEBV-associated interstitial pneumonitis. A 28-year-old female was admitted with a fever that persisted for 3 weeks. She had multiple lymphadenopathy, hepatosplenomegaly, pancytopenia, and elevated serum aminotransferase levels. Serology for antibodies was positive and chest computed tomography showed diffuse ground glass opacities in both lungs. Histopathology of the lung tissue showed lymphocyte infiltration, and EBV DNA was detected in those lymphocytes using in situ hybridization with an EBV-encoded RNA probe. After 1 month of hospitalization, she improved without specific treatment.

Self-reported illness from chemical odors in young adults without clinical syndromes or occupational exposures

DOE Office of Scientific and Technical Information (OSTI.GOV)

Bell, I.R.; Schwartz, G.E.; Peterson, J.M.

The present survey of young adult college students investigated the prevalence of self-reported illness from the smell of five common environmental chemicals (cacosmia): (1) pesticide, (2) automobile exhaust, (3) paint, (4) new carpet, and (5) perfume. Sixty-six percent of 643 students reported feeling ill from one or more of the five chemicals; 15% identified the smell of at least four chemicals as making them ill. Ratings of illness from pesticide correlated weakly but significantly with ratings for the largest number of individual symptoms (9 of 11); daytime tiredness and daytime grogginess both correlated at high levels of significance with illnessmore » ratings (on a 5-point scale) for four of the five chemicals. The most cacosmic group (CS) included significantly more women (79%) than the noncacosmic group (NS) (49%); women overall were more cacosmic than men (p < .001), even with the significant covariate of depression. Ratings of cacosmia correlated only weakly with scores for depression (r = 0.16), anxiety (r = 0.08), and trait shyness (r = 0.18) in the total sample. On stepwise multiple regression with cacosmia score as the dependent measure, shyness accounted for 5.8% of the variance, while depression, anxiety, sense of mastery, and repression did not enter the equation. Histories of physician-diagnosed hay fever, but not asthma, were more frequent in the CS (16%) than in the NS group (5%). Without the confounds of chronic illness or specific treatment programs, these data are similar to patterns described clinically for a subset of patients with multiple chemical sensitivities (MCS), including previous data on increased nasal resistance in MCS. The findings also suggest a limited relationship between degree of self-reported cacosmia and trait shyness, possibly on the basis of limbic hyper-reactivity. Psychological variables did not otherwise account for any of the variance in self-rated illness from chemical odors in this sample. 56 refs., 1 fig., 3 tabs.« less

Impact of chronic illness on child and family: an overview based on five surveys with implications for management.

PubMed

Satterwhite, B B

1978-01-01

For the past eight years the Rochester Child Health Group has systematically investigated chronic illness in childhood with the goal of minimizing the psychosocial sequelae of chronic illness through more optimal management. This overview examines the impact of chronic illness on 404 children and their families in five separate studies: 1) 209 children in a follow-up of all children with chronic symptoms in a previous random sampling of children; 2) 42 children with juvenile arthritis; 3) 44 nephrotic children; 4) 54 asthmatic children; 5) 55 chronically ill children living in rural areas of Western New York. Information was obtained through parental interviews, school reports, and psychological testing of the child. The percentage of parents reporting impact of the child's illness on family differed according to study population. The percentage reporting areas of impact according to severity of the illness is as follows: worry, 75--97; financial, 46--60; fatigue of parent, 31--65; change in sleep arrangements, 17--31; change in furnishings, 15--40; less social life for parents, 12--35; restrictions on travel, 13--40; parental friction, 9--20; sibling neglect, 10--20; sibling resentment, 10--25; embarrassment, 12--20; interference from relatives, 5--17. Over half the parents felt their child's future education, job chances, and social life would be affected. One third reported activity limitations. Compared to a control group of children, a significantly greater percentage of parents of the chronically ill reported teacher concern about their child's effort and behavior, and showed concern about the child having too few friends. Two of the three studies in which psychological appraisals were obtained suggested that more of the ill children than controls showed indices of maladjustment. School information from two studies showed more of the ill children than controls underachieving and being referred to a school psychologist. Work by the Rochester Child Health Group has pointed up several ways in which providers of care can more optimally assist families in order to minimize these problems: 1) identifying families at risk at the onset to find which families may require special support; 2) Assuring that family and all care providers know who is orchestrating care, and that all areas of care are being provided; 3) Assuring that where necessary, an outreach person is meeting the needs of the family and child on an intensive, sustained, caring and creative basis.

Gulf War Illness: Challenges Persist.

PubMed

Nettleman, Mary

2015-01-01

It has been more than 20 years since the United States and coalition forces entered Kuwait and Iraq. Actual combat was of remarkably short duration: less than 1 week of sustained ground activity and 6 weeks of air missions. Thus, it was surprising when approximately 200,000 returning US veterans were affected by a chronic multi-symptom illness that came to be known as Gulf War Illness (GWI). There were many challenges in investigating GWI, not least of which was that it took several years before the condition was officially taken seriously. There were multiple exposures to potentially causal agents on and off the battlefield, but these exposures were documented incompletely if at all, leaving epidemiologists to rely on self-report for information. In the past 2 years, significant controversy has arisen over the future directions of the field. Despite these challenges, several studies have implicated exposure to acetylcholinesterase inhibitors such as pyridostigmine bromide in the genesis of the condition. The story of GWI can inform research into other conditions and guide future work on veterans' health.

[Social representations of illness among people with chronic kidney disease].

PubMed

Campos, Caroline Gonçalves Pustiglione; Mantovani, Maria de Fátima; Nascimento, Maria Elisa Brum do; Cassi, Cristiam Carla

2015-06-01

To describe the social representations of illness among people with chronic kidney disease undergoing haemodialysis. Descriptive, qualitative research, anchored on the social representations theory. This study was conducted in the municipality of Ponta Grossa, Paraná State, Brazil, with 23 adults with chronic kidney disease. Data were collection between February and November 2012 by means of a semi-structured interview, and analyzed using Content Analysis. The interviews led to the categories "the meaning of kidney disease": awareness of finitude, and "survival": the visible with chronic kidney disease. The representation of illness unveiled a difference and interruption in life projects, and haemodialysis meant loss of freedom, imprisonment and stigma. Family ties and the individuals´ social role are determining representations for healthcare.

Finding joy in poor health: The leisure-scapes of chronic illness.

PubMed

McQuoid, Julia

2017-06-01

Globally, increasing numbers of people face the challenge of enjoying life while living with long-term illness. Little research addresses leisure participation for people with chronic illness despite its links with mental and physical health and self-rated quality of life. I use a space-time geographical approach to explore experiences with leisure in everyday life for 26 individuals with chronic kidney disease (CKD) in Australia. I examine ways in which the spatial and temporal characteristics of illness management and symptoms shape where, when, and how participants can enjoy leisure, focusing on: 1) logistical conflicts between illness and leisure; 2) rhythmic interferences with the force of habit in skilful leisure performance; and 3) absorbing experiences of encounter with self and place through leisure. Data were collected from 2013 to 2014. Participants kept diaries over two sample days and then participated in semi-structured interviews. Findings show that the voluntary nature of leisure offered participants important benefits in coping with and managing illness over the long-term, including opportunities to experience greater sense of control, an alternative experience of one's body to the 'sick body', and knowledge creation that supports adaptation to the uncertainties of illness trajectories. The ability to engage in meaningful leisure was constrained by the shaping forces of illness symptoms and management on participants' leisure-scapes. Illness treatment regimens should therefore be adapted to better accommodate leisure participation for chronically ill patients, and leisure should be explicitly incorporated into illness management plans negotiated between patients and health practitioners. Finally, greater understanding of the transformative capacity of habit in activities of experimentation and play may have wider-reaching implications for leisure's potential applications in public health. Leisure should be taken seriously as a vehicle for enhancing wellbeing and adaptation to life with long-term illness. Copyright © 2017 Elsevier Ltd. All rights reserved.

Finding joy in poor health: The leisure-scapes of chronic illness

PubMed Central

2017-01-01

Globally, increasing numbers of people face the challenge of enjoying life while living with long-term illness. Little research addresses leisure participation for people with chronic illness despite its links with mental and physical health and self-rated quality of life. I use a space-time geographical approach to explore experiences with leisure in everyday life for 26 individuals with chronic kidney disease (CKD) in Australia. I examine ways in which the spatial and temporal characteristics of illness management and symptoms shape where, when, and how participants can enjoy leisure, focusing on: 1) logistical conflicts between illness and leisure; 2) rhythmic interferences with the force of habit in skilful leisure performance; and 3) absorbing experiences of encounter with self and place through leisure. Data were collected from 2013 to 2014. Participants kept diaries over two sample days and then participated in semi-structured interviews. Findings show that the voluntary nature of leisure offered participants important benefits in coping with and managing illness over the long-term, including opportunities to experience greater sense of control, an alternative experience of one’s body to the ‘sick body’, and knowledge creation that supports adaptation to the uncertainties of illness trajectories. The ability to engage in meaningful leisure was constrained by the shaping forces of illness symptoms and management on participants’ leisure-scapes. Illness treatment regimens should therefore be adapted to better accommodate leisure participation for chronically ill patients, and leisure should be explicitly incorporated into illness management plans negotiated between patients and health practitioners. Finally, greater understanding of the transformative capacity of habit in activities of experimentation and play may have wider-reaching implications for leisure’s potential applications in public health. Leisure should be taken seriously as a vehicle for enhancing wellbeing and adaptation to life with long-term illness. PMID:28475903

Prolonged grief symptoms related to loss of physical functioning: examining unique associations with medical service utilization.

PubMed

Holland, Jason M; Graves, Stacy; Klingspon, Kara L; Rozalski, Vincent

2016-01-01

Prolonged grief, a severe and chronic form of grieving most commonly studied in the context of bereavement, may have relevance to losses associated with chronic illness (e.g. grief related to loss of functioning or loss of a planned future). The purpose of the present study is to examine the unique associations between prolonged grief symptoms and service utilization patterns. An online self-report assessment battery was administered among a sample of 275 older adults with at least one chronic illness that caused significant physical impairment. Even after statistically controlling for relevant physical health (e.g. severity of physical limitations, somatic symptoms, number of chronic illnesses) and psychosocial variables (e.g. social support, depression/anxiety), more severe prolonged grief symptoms were associated with a greater number of emergency room visits, overnight stays in the hospital and total nights in the hospital. These findings highlight the importance of screening for prolonged grief symptomatology with older individuals with a debilitating chronic illness. Recent evidence suggests that prolonged grief may have relevance for losses associated with physical illness. The present study shows that prolonged grief reactions related to physical illness (e.g. grieving the loss of functioning) are uniquely associated with increased hospital-based service utilization. Given the relevance of prolonged grief reactions in this population, practitioners may wish to assess for these symptoms. Future clinical research should focus on developing interventions to target prolonged grief symptoms associated with these losses.

When work and satisfaction with life do not go hand in hand: health barriers and personal resources in the participation of people with chronic physical disabilities.

PubMed

van Campen, Cretien; Cardol, Mieke

2009-07-01

People with chronic physical disabilities participate less in both paid and voluntary work and are less satisfied with their lives than people without health problems. Governments and scientists have suggested that participation in employment is the main road to well-being. We analysed national survey data on the participation in work and satisfaction with life, comparing people with a chronic illness and a physical disability (n=603) to people with a chronic illness but without a physical disability (n=1199) and the general population (n=6128) in the Netherlands. The results show that the relationship between happiness and work is different for people with a chronic illness and a physical disability, as compared to the other two populations. Fewer people with a chronic illness and disability were categorized as 'satisfied people with work' (i.e. participating in work and satisfied with their life), while most people belonged to a group of 'satisfied people without work' and, surprisingly, not to the expected group of 'dissatisfied people without work'. In order to explain this exceptional distribution we modelled satisfied participation in work as an outcome of a balance between personal resources and barriers. By means of discriminant regression analysis, we identified the severity of motor disability as the main barrier, and education level and age, as the main resource factors that distinguish between 'satisfied people with work' and others among the group of people with a chronic illness and a physical disability.

Talking about Illness: Mothers' and Toddlers' Conversations during a Joint Book-Reading Task

ERIC Educational Resources Information Center

White, Carmel Parker; Bellamy, Roberta Woodlief; Powell, Monica Creech; Wittenauer, Ashley Rae

2011-01-01

This study examined the language used by mothers to talk about acute and chronic illness while engaged in a joint book-reading of a story where the main character had a cold. Thirty-four toddlers and their mothers participated in the study. Some of the mothers had a chronic illness, and some of the families or the children had had an acute illness…

The Relationship of Chronic Medical Illnesses, Poor Health-Related Lifestyle Choices, and Health Care Utilization to Recovery Status in Borderline Patients over a Decade of Prospective Follow-up

PubMed Central

Keuroghlian, Alex S.; Frankenburg, Frances R.; Zanarini, Mary C.

2013-01-01

Background The interaction of borderline personality disorder (BPD) with physical health has not been well characterized. In this longitudinal study, we investigated the long-term relationship of chronic medical illnesses, health-related lifestyle choices, and health services utilization to recovery status in borderline patients over a decade of prospective follow-up. Method 264 borderline patients were interviewed concerning their physical health at 6-year follow-up in a longitudinal study of the course of BPD. This sample was then reinterviewed five times at two-year intervals over the next ten years. We defined recovery from BPD based on a Global Assessment of Functioning score of 61 or higher, which required BPD remission, one close relationship, and full-time competent and consistent work or school attendance. We controlled for potentially confounding effects of time-varying major depressive disorder. Results Never-recovered borderline patients were significantly more likely than ever-recovered borderline patients to have a medical syndrome, obesity, osteoarthritis, diabetes, urinary incontinence, or multiple medical conditions (p < 0.0063). They were also significantly more likely to report pack-per-day smoking, weekly alcohol use, no regular exercise, daily sleep medication use, or pain medication overuse (p < 0.0083). In addition, never-recovered borderline patients were significantly more likely than ever-recovered borderline patients to undergo a medical emergency room visit, medical hospitalization, X-ray, CT scan, or MRI scan (p < 0.0063). Conclusions Over a decade of prospective follow-up, failure to recover from BPD seems to be associated with a heightened risk of chronic medical illnesses, poor health-related lifestyle choices, and costly health services utilization. PMID:23856083

Multi-Site Clinical Assessment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (MCAM): Design and Implementation of a Prospective/Retrospective Rolling Cohort Study.

PubMed

Unger, Elizabeth R; Lin, Jin-Mann S; Tian, Hao; Natelson, Benjamin H; Lange, Gudrun; Vu, Diana; Blate, Michelle; Klimas, Nancy G; Balbin, Elizabeth G; Bateman, Lucinda; Allen, Ali; Lapp, Charles W; Springs, Wendy; Kogelnik, Andreas M; Phan, Catrina C; Danver, Joan; Podell, Richard N; Fitzpatrick, Trisha; Peterson, Daniel L; Gottschalk, C Gunnar; Rajeevan, Mangalathu S

2017-04-15

In the Multi-Site Clinical Assessment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (MCAM), we relied on expert clinician diagnoses to enroll patients from 7 specialty clinics in the United States in order to perform a systematic collection of data on measures of myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS). Healthy persons and those with other illnesses that share some features with ME/CFS were enrolled in comparison groups. The major objectives were to: 1) use standardized questionnaires to measure illness domains of ME/CFS and to evaluate patient heterogeneity overall and between clinics; 2) describe the course of illness, identify the measures that best correlate with meaningful clinical differences, and assess the performances of questionnaires as patient/person-reported outcome measures; 3) describe prescribed medications, orders for laboratory and other tests, and management tools used by expert clinicians to care for persons with ME/CFS; 4) collect biospecimens for future hypothesis testing and for evaluation of morning cortisol profiles; and 5) identify measures that best distinguish persons with ME/CFS from those in the comparison groups and detect subgroups of persons with ME/CFS who may have different underlying causes. Enrollment began in 2012 and is planned to continue in multiple stages through 2017. We present the MCAM methods in detail, along with an initial description of the 471 patients with ME/CFS who were enrolled in stage 1. Published by Oxford University Press on behalf of the Johns Hopkins Bloomberg School of Public Health 2017. This work is written by (a) US Government employee(s) and is in the public domain in the US.

Chronic Illness in Adolescents: A Sociological Perspective.

ERIC Educational Resources Information Center

Silber, Tomas J.

1983-01-01

Relates chronic illness in adolescents to a sociological model of deviance. Four situations are discussed in which the issues of prognosis, responsibility, and stigma elicit societal response. The usefulness of a sociological model consists in making vague societal perceptions and rules explicit. (JAC)

24 CFR 91.5 - Definitions.

Code of Federal Regulations, 2010 CFR

2010-04-01

... chronically homeless, a person must have been sleeping in a place not meant for human habitation (e.g., living... disorder, serious mental illness, developmental disability, or chronic physical illness or disability... designed for, or ordinarily used as, a regular sleeping accommodation for human beings. Homeless...

Communication about chronic critical illness.

PubMed

Nelson, Judith E; Mercado, Alice F; Camhi, Sharon L; Tandon, Nidhi; Wallenstein, Sylvan; August, Gary I; Morrison, R Sean

2007-12-10

Despite poor outcomes, life-sustaining treatments including mechanical ventilation are continued for a large and growing population of patients with chronic critical illness. This may be owing in part to a lack of understanding resulting from inadequate communication between clinicians and patients and families. Our objective was to investigate the informational needs of patients with chronic critical illness and their families and the extent to which these needs are met. In this prospective observational study conducted at 5 adult intensive care units in a large, university-affiliated hospital in New York, New York, 100 patients with chronic critical illness (within 3-7 days of elective tracheotomy for prolonged mechanical ventilation) or surrogates for incapacitated patients were surveyed using an 18-item questionnaire addressing communication about chronic critical illness. Main outcome measures included ratings of importance and reports of whether information was received about questionnaire items. Among 125 consecutive, eligible patients, 100 (80%) were enrolled; questionnaire respondents included 2 patients and 98 surrogates. For all items, more than 78% of respondents rated the information as important for decision making (>98% for 16 of 18 items). Respondents reported receiving no information for a mean (SD) of 9.0 (3.3) of 18 items, with 95% of respondents reporting not receiving information for approximately one-quarter of the items. Of the subjects rating the item as important, 77 of 96 (80%) and 69 of 74 (93%) reported receiving no information about expected functional status at hospital discharge and prognosis for 1-year survival, respectively. Many patients and their families may lack important information for decision making about continuation of treatment in the chronic phase of critical illness. Strategies for effective communication in this clinical context should be investigated and implemented.

Communication About Chronic Critical Illness

PubMed Central

Nelson, Judith E.; Mercado, Alice F.; Camhi, Sharon L.; Tandon, Nidhi; Wallenstein, Sylvan; August, Gary I.; Morrison, R. Sean

2008-01-01

Background Despite poor outcomes, life-sustaining treatments including mechanical ventilation are continued for a large and growing population of patients with chronic critical illness. This may be owing in part to a lack of understanding resulting from inadequate communication between clinicians and patients and families. Our objective was to investigate the informational needs of patients with chronic critical illness and their families and the extent to which these needs are met. Methods In this prospective observational study conducted at 5 adult intensive care units in a large, university-affiliated hospital in New York, New York, 100 patients with chronic critical illness (within 3–7 days of elective tracheotomy for prolonged mechanical ventilation) or surrogates for incapacitated patients were surveyed using an 18-item questionnaire addressing communication about chronic critical illness. Main outcome measures included ratings of importance and reports of whether information was received about questionnaire items. Results Among 125 consecutive, eligible patients, 100 (80%) were enrolled; questionnaire respondents included 2 patients and 98 surrogates. For all items, more than 78% of respondents rated the information as important for decision making (>98% for 16 of 18 items). Respondents reported receiving no information for a mean (SD) of 9.0 (3.3) of 18 items, with 95% of respondents reporting not receiving information for approximately one-quarter of the items. Of the subjects rating the item as important, 77 of 96 (80%) and 69 of 74 (93%) reported receiving no information about expected functional status at hospital discharge and prognosis for 1-year survival, respectively. Conclusions Many patients and their families may lack important information for decision making about continuation of treatment in the chronic phase of critical illness. Strategies for effective communication in this clinical context should be investigated and implemented. PMID:18071175

Recent developments in the care, treatment, and rehabilitation of the chronic mentally ill in Nigeria.

PubMed

Jegede, R O; Williams, A O; Sijuwola, A O

1985-06-01

Nigeria, with a population estimated at 80 million, has fewer than 100 psychiatrists and psychologists and only 20 psychiatric facilities. Most chronic mental patients are cared for by their relatives, by traditional healers, or by religious healers affiliated with the new Christian churches, which have proliferated in recent years. Lack of organized social welfare services makes the family the only consistent source of social support for the mentally ill; patients who lose contact with their families often become homeless wanderers. Although the majority of the mentally ill in Nigeria are cared for outside the mental health system, recent developments, such as the establishment of mobile clinics and village-based psychiatric units, show great potential for advancing the treatment of chronic mental illness in Nigeria.

Illness Perception of Patients with Functional Gastrointestinal Disorders.

PubMed

Xiong, Na-Na; Wei, Jing; Ke, Mei-Yun; Hong, Xia; Li, Tao; Zhu, Li-Ming; Sha, Yue; Jiang, Jing; Fischer, Felix

2018-01-01

To investigate the illness perception characteristics of Chinese patients with functional gastrointestinal disorders (FGID), and the mediating role between symptoms, psychopathology, and clinical outcomes. Six illness groups from four outpatient departments of a general hospital in China were recruited, including the FGID patient group. The modified and validated Chinese version of the illness perception questionnaire-revised was utilized, which contained three sections: symptom identity, illness representation, and causes. The 12-item short-form health survey was utilized to reflect the physical and mental health-related quality of life (HRQoL). The Toronto alexithymia scale was used to measure the severity of alexithymia. Additional behavioral outcome about the frequency of doctor visits in the past 12 months was measured. Pathway analyses with multiple-group comparisons were conducted to test the mediating role of illness perception. Overall, 600 patients were recruited. The illness perceptions of FGID patients were characterized as with broad non-gastrointestinal symptoms (6.8 ± 4.2), a negative illness representation (more chronic course, worse consequences, lower personal and treatment control, lower illness coherence, and heavier emotional distress), and high numbers of psychological and culture-specific attributions. Fit indices of the three hypothesized path models (for physical and mental HRQoL and doctor-visit frequency, respectively) supported the mediating role of illness perceptions. For example, the severity of alexithymia and non-gastrointestinal symptoms had significant negative effect on mental quality of life through both direct (standardized effect: -0.085 and -0.233) and indirect (standardized effect: -0.045 and -0.231) influence via subscales of consequences, emotional representation, and psychological and risk factor attributions. Multi-group confirmatory factor analysis showed similar psychometric properties for FGID patients and the other disease group. The management of FGID patients should take into consideration dysfunctional illness perceptions, non-gastrointestinal symptoms, and emotion regulation.

A descriptive and comparative study of the prevalence of depressive and anxiety disorders in low-income adults with type 2 diabetes and other chronic illnesses.

PubMed

Thomas, Janet; Jones, Glenn; Scarinci, Isabel; Brantley, Phillip

2003-08-01

To determine whether type 2 diabetes contributes to the presence of depressive and anxiety disorder diagnoses in low-income adults with hypertension, asthma, and/or arthritis. Using a cross-sectional design, this study administered a structured diagnostic interview to low-income primary care patients diagnosed with type 2 diabetes, hypertension, arthritis, and asthma, as well as to those with no chronic illness (n = 326), to determine the 12-month prevalence of depressive and anxiety disorders. A logistic regression (LR) model was used to assess whether a diagnosis of depression and/or anxiety was associated with type 2 diabetes after adjusting for known risk factors. A high prevalence rate of depressive and/or anxiety disorders was found in the total sample (29%) and in all three illness groups: type 2 diabetes (36%), other chronic illnesses (24%), and no chronic illness (31%). Using LR, a main effect was detected for illness group when age and education were controlled (chi(2) = 22.66, df 4, P = 0.000). Specifically, the odds of occurrence of a depressive and/or anxiety disorder in those with comorbid type 2 diabetes were twice that in the nondiabetic, chronically ill comparison group (odds ratio 2.26, 95% CI 1.28-4.01, P = 0.005). These results suggest a positive contribution of type 2 diabetes to increased rates of depressive and/or anxiety disorders in patients with hypertension, asthma, and/or arthritis and support prior research that type 2 diabetes may serve as an indicator of depression and anxiety in low-income adults treated in primary care clinics.

The Constant Shadow: Reflections on the Life of the Chronically Ill Child.

ERIC Educational Resources Information Center

Massie, Robert K., Jr.

1984-01-01

This article provides insight, through the author's personal experience, into the life of the chronically ill child. Problems encountered by these children and their families due to inadequacies in the educational system, medical profession, and insurance companies are discussed. (DF)

20 CFR 30.220 - What are the criteria for eligibility for benefits relating to chronic silicosis?

Code of Federal Regulations, 2010 CFR

2010-04-01

...' COMPENSATION PROGRAMS, DEPARTMENT OF LABOR ENERGY EMPLOYEES OCCUPATIONAL ILLNESS COMPENSATION PROGRAM ACT OF 2000 CLAIMS FOR COMPENSATION UNDER THE ENERGY EMPLOYEES OCCUPATIONAL ILLNESS COMPENSATION PROGRAM ACT... disease that arose as a consequence of the accepted chronic silicosis. ...

[Development of Empowerment Program for Persons with Chronic Mental Illness and Evaluation of Impact].

PubMed

Kim, Mijung; Lee, Kyunghee

2015-12-01

This study was done to develop an empowerment program for people with chronic mental illness and to analyze effects of the program on level of empowerment. The research was conducted using a nonequivalent control group pretest-posttest design. Participants were 37 people with chronic mental illness (experimental group: 18, control group: 19). The empowerment program was provided for 8 weeks (15 sessions). Data were collected between July 21 and October 17, 2014. Data were analyzed using Chi-square, Fisher's exact test, Sapiro-Wilk test, and Repeated measure ANOVA with SPSS/WIN 18.0. Quantitative results show that self-efficacy, interpersonal relationships, attitudes in the workplace, occupational performance capacity, and levels of empowered execute were significantly better in the experimental group compared to the control group. Study findings indicate that this empowerment program for persons with chronic mental illness is effective for improving self efficacy, interpersonal skills, attitudes in the workplace, occupational performance capacity, levels of empowered execute.

The association between trauma and chronic medical conditions in individuals with severe mental illness.

PubMed

Raab, Phillip Andrew; Claypoole, Keith Harvey; Hayashi, Kentaro; Baker, Charlene

2012-10-01

Based on the concept of allostatic load, this study proposed and evaluated a model for the relationship between childhood trauma, chronic medical conditions, and intervening variables affecting this relationship in individuals with severe mental illness. Childhood trauma, adult trauma, major depressive disorder symptoms, posttraumatic stress disorder symptoms, health risk factors, and chronic medical conditions were retrospectively assessed using a cross-sectional survey design in a sample of 117 individuals with severe mental illness receiving public mental health services. Path analyses produced a good-fitting model, with significant pathways from childhood to adult trauma and from adult trauma to chronic medical conditions. Multisample path analyses revealed the equivalence of the model across sex. The results support a model for the relationship between childhood and adult trauma and chronic medical conditions, which highlights the pathophysiological toll of cumulative trauma experienced across the life span and the pressing need to prevent retraumatization in this population.

[Siblings of chronically ill adolescents: does chronic illness have effects on their development potentials?].

PubMed

Boeger, A; Seiffge-Krenke, I

1996-12-01

Sibling relationships have been studied by developmental psychologists for a long time. Whereas previous research on this topic was focused on examining variables such as gender, age differences and sibling sequence, recent research efforts have directed more attention towards understanding the functions siblings perform for one another and what kinds of emotional relationships exist between them. In this regard, we became interested in identifying the special burdens which siblings of chronically sick children and adolescents must deal with. Two case studies are presented here selected from the research findings obtained from investigation in our research project. Coping with chronic illness as seen in juvenile diabetes. These case studies demonstrate that healthy siblings of chronically sick adolescents may be subjected to considerable burdens and illustrate, as well, the kinds of coping mechanisms siblings adopt in order to deal with them.

Differences in illness perception between children with cancer and other chronic diseases and their parents.

PubMed

Szentes, Annamária; Kökönyei, Gyöngyi; Békési, Andrea; Bokrétás, Ildikó; Török, Szabolcs

2017-10-01

The purpose of this study was to explore the differences in illness perception between children with cancer and other chronic diseases. A secondary aim was to examine the similarities and differences between the illness perception of these children and their parents. The Revised Illness Perception Questionnaire (IPQ-R) was used to measure the children's and parents' illness perceptions. In this study, 184 children (ages 8-18 years) and their caregivers completed the questionnaires. This study shows that children with cancer feel that they have greater control over their treatment compared to the other two groups. The children's parents have more pessimistic views of the illness than their children. Examinations of illness perceptions among paediatric cancer patients and their families are essential in designing psychosocial interventions for these families. The clinical value of our results can help better understand the cancer-specific features of illness perceptions.

How do high cost-sharing policies for physician care affect inpatient care use and costs among people with chronic disease?

PubMed

Xin, Haichang

2015-01-01

Rapidly rising health care costs continue to be a significant concern in the United States. High cost-sharing strategies thus have been widely used to address rising health care costs. Since high cost-sharing policies can reduce needed care as well as unneeded care use, it raises the concern whether these policies for physician care are a good strategy for controlling costs among chronically ill patients, especially whether utilization and costs in inpatient care will increase in response. This study examined whether high cost sharing in physician care affects inpatient care utilization and costs differently between individuals with and without chronic conditions. Findings from this study will contribute to the insurance benefit design that can control care utilization and save costs of chronically ill individuals. Prior studies suffered from gaps that limit both internal validity and external validity of their findings. This study has its unique contributions by filling these gaps jointly. The study used data from the 2007 Medical Expenditure Panel Survey, a nationally representative sample, with a cross-sectional study design. Instrumental variable technique was used to address the endogeneity between health care utilization and cost-sharing levels. We used negative binomial regression to analyze the count data and generalized linear models for costs data. To account for national survey sampling design, weight and variance were adjusted. The study compared the effects of high cost-sharing policies on inpatient care utilization and costs between individuals with and without chronic conditions to answer the research question. The final study sample consisted of 4523 individuals; among them, 752 had hospitalizations. The multivariate analysis demonstrated consistent patterns. Compared with low cost-sharing policies, high cost-sharing policies for physician care were not associated with a greater increase in inpatient care utilization (P = .86 for chronically ill people and P = .67 for healthy people, respectively) and costs (P = .38 for chronically ill people and P = .68 for healthy people, respectively). The sensitivity analysis with a 10% cost-sharing level also generated consistent insignificant results for both chronically ill and healthy groups. Relative to nonchronically ill individuals, chronically ill individuals may increase their utilization and expenditures of inpatient care to a similar extent in response to increased physician care cost sharing. This may be due to cost pressure from inpatient care and short observation window. Although this study did not find evidence that high cost-sharing policies for physician care increase inpatient care differently for individuals with and without chronic conditions, interpretation of this finding should be cautious. It is possible that in the long run, these sick people would demonstrate substantial demands for medical care and there could be a total cost increase for health plans ultimately. Health plans need to be cautious of policies for chronically ill enrollees.

Understanding differences between caregivers and non-caregivers in completer rates of Chronic Disease Self-Management Program.

PubMed

Shi, J; McCallion, P; Ferretti, L A

2017-06-01

The Chronic Disease Self-Management Program (CDSMP) was developed to advance participants' self-care of chronic illness and may be offered to both individuals with chronic conditions and their caregivers. Previous studies of CDSMP have identified multiple resulting health benefits for participants as well as factors associated with participants' completion rates. This study investigated differences on these issues between caregiving and non-caregiving participants. Secondary analysis using regression analysis to predict the outcome. Baseline data were collected directly from adult (over 18 years) participants of CDSMP workshops in New York State from 2012 to 2015 (n = 2685). Multi-level logistic regression analysis was used to compare the difference on completion of workshops (attended four or more of sessions) and contributing factors with the independent variable of whether participants provided care/assistance to a family member or friends with long-term illness or disability. Additional individual-level variables controlled for in the model were age, gender, race/ethnicity, living arrangement, education, the number of chronic conditions and disabilities; as were workshop-level characteristics of class size, language used, workshop leader experience, location urbanity and delivery site type. Participants who provided care to family or friends were 28% more likely to complete the workshop compared with those who did not (odds ratio = 1.279, P < 0.05). Different factors influenced the completion of CDSMP workshop for caregivers and non-caregivers. People who provide care to others appeared to have stronger motivation to complete the workshops with greater benefits. Agencies offering CDSMP should encourage caregivers to attend. Copyright © 2017. Published by Elsevier Ltd.

Treatment effect with paliperidone palmitate compared with oral antipsychotics in patients with recent-onset versus more chronic schizophrenia and a history of criminal justice system involvement.

PubMed

Alphs, Larry; Bossie, Cynthia; Mao, Lian; Lee, Erin; Starr, H Lynn

2018-02-01

Long-acting injectable antipsychotics (APs) are not well studied in recent-onset schizophrenia. This exploratory analysis of a study designed to reflect real-world schizophrenia, as defined by patients, interventions and outcomes, compared relative treatment effect between once-monthly paliperidone palmitate (PP) and daily oral APs in patients with recent-onset or chronic illness METHODS: This randomized, open-label, event monitoring board-blinded study compared treatment response in subjects with schizophrenia and a history of criminal justice system involvement following treatment with PP or oral APs for 15 months (ClinicalTrials.gov identifier, NCT01157351). Event-free probabilities were estimated using Kaplan-Meier method; hazard ratios (HRs) were estimated using Cox proportional hazard models. This subgroup analysis analysed data by disease duration (≤5 (recent-onset) or >5 years (chronic illness) since first psychiatric diagnosis). Seventy-seven subjects met the criteria for recent-onset illness; 365 for chronic illness. HRs (95% CI) for treatment failure for oral APs versus PP were 1.73 (0.87-3.45; P = 0.121) for recent-onset and 1.37 (1.02-1.85; P = 0.039) for chronic illness. Most common adverse events for PP versus oral APs were injection site pain (recent-onset, 26% vs. 0%; chronic, 17% vs. 0%), increased weight (14% vs. 6%; 12% vs. 6%), akathisia (14% vs. 9%; 10% vs. 7%), insomnia (12% vs. 17%; 18% vs. 10%) and anxiety (12% vs. 6%; 10% vs. 8%). Although neither pre-planned nor adequately powered, the estimated HRs suggest that the relative advantage of PP over oral APs for reducing the risk for treatment failure may be greater in patients with recent-onset schizophrenia than in those with more chronic illness. © 2015 The Authors. Early Intervention in Psychiatry published by Wiley Publishing Asia Pty Ltd.

Adaptive leadership framework for chronic illness: framing a research agenda for transforming care delivery.

PubMed

Anderson, Ruth A; Bailey, Donald E; Wu, Bei; Corazzini, Kirsten; McConnell, Eleanor S; Thygeson, N Marcus; Docherty, Sharron L

2015-01-01

We propose the Adaptive Leadership Framework for Chronic Illness as a novel framework for conceptualizing, studying, and providing care. This framework is an application of the Adaptive Leadership Framework developed by Heifetz and colleagues for business. Our framework views health care as a complex adaptive system and addresses the intersection at which people with chronic illness interface with the care system. We shift focus from symptoms to symptoms and the challenges they pose for patients/families. We describe how providers and patients/families might collaborate to create shared meaning of symptoms and challenges to coproduce appropriate approaches to care.

Psychosocial issues for children and adolescents with chronic illness: self-esteem, school functioning and sports participation.

PubMed

Vitulano, Lawrence A

2003-07-01

Self-esteem, school functioning, and sports participation are among the most significant psychosocial issues that affect children and adolescents with chronic illness. Although these capacities are essential components of development for all children, they present special concerns for children with limitations of health. Parents, teachers, and coaches play important roles in providing normalizing and gratifying opportunities for children who struggle to be competent and accepted by their peers. Much can be done to provide chronically ill children with experiences and support that will allow them to grow up happier, feel better about themselves, and enjoy more success.

Care meanings, expressions, and experiences of those with chronic mental illness.

PubMed

George, Tamara B

2002-02-01

The care meanings, expressions, and experiences of those with a chronic mental illness living in the community were explored with use of Leininger's Theory of Culture Care Diversity and Universality and the Sunrise Model. Results indicate that people with chronic mental illness have identifiable values, norms, and lifeways that set them apart from the dominant culture. Cultural and social structure factors, ethnohistory, and environmental context influence their desired care. Nurses can use this knowledge to provide culturally congruent care in new ways to enhance the quality of life, productivity, and well-being of this subculture. Copyright 2002 by W.B. Saunders Company

Chronically ill rural women: self-identified management problems and solutions.

PubMed

Cudney, Shirley; Sullivan, Therese; Winters, Charlene A; Paul, Lynn; Oriet, Pat

2005-03-01

To add to the knowledge base of illness management of chronically ill, rural women by describing the self-identified problems and solutions reported by women participants in the online health-education segment of the Women to Women (WTW) computer outreach project. WTW is a research-based computer intervention providing health education and online peer support for rural women with chronic diseases. Messages posted to the online chat room were examined to determine the women's self-management problems and solutions. The self-identified problems were: (1) difficulties in carrying through on self-management programmes; (2) negative fears and feelings; (3) poor communication with care providers; and (4) disturbed relationships with family and friends. The self-identified solutions to these problems included problem-solving techniques that were tailored to the rural lifestyle. Although not all problems were 'solvable', they could be 'lived with' if the women's prescriptions for self-management were used. Glimpses into the women's day-to-day experiences of living with chronic illness gleaned from the interactive health-education discussions will give health professionals insights into the women's efforts to manage their illnesses. The data provide health professionals with information to heighten their sensitivity to their clients' day-to-day care and educational needs.

Sarcopenia and critical illness: a deadly combination in the elderly.

PubMed

Hanna, Joseph S

2015-03-01

Sarcopenia is the age-associated loss of lean skeletal muscle mass. It is the result of multiple physiologic derangements, ultimately resulting in an insidious functional decline. Frailty, the clinical manifestation of sarcopenia and physical infirmity, is associated with significant morbidity and mortality in the elderly population. The underlying pathology results in a disruption of the individual's ability to tolerate internal and external stressors such as injury or illness. This infirmity results in a markedly increased risk of falls and subsequent morbidity and mortality from the resulting traumatic injury, as well as an inability to recover from medical insults, resulting in critical illness. The increasing prevalence of sarcopenia and critical illness in the elderly has resulted in a deadly intersection of disease processes. The lethality of this combination appears to be the result of altered muscle metabolism, decreased mitochondrial energetics needed to survive critical illness, and a chronically activated catabolic state likely mediated by tumor necrosis factor-α. Furthermore, these underlying derangements are independently associated with an increased incidence of critical illness, resulting in a progressive downward spiral. Considerable evidence has been gathered supporting the role of aggressive nutrition support and physical therapy in improving outcomes. Critical care practitioners must consider sarcopenia and the resulting frailty phenotype a comorbid condition so that the targeted interventions can be instituted and research efforts focused. © 2015 American Society for Parenteral and Enteral Nutrition.

Systematic Review: Bullying Involvement of Children With and Without Chronic Physical Illness and/or Physical/Sensory Disability-a Meta-Analytic Comparison With Healthy/Nondisabled Peers.

PubMed

Pinquart, Martin

2017-04-01

To compare levels of victimization and perpetration associated with bullying among children and adolescents with and without chronic physical illnesses and/or physical or sensory disabilities. In total, 107 studies were identified using a systematic search in electronic databases and cross-referencing. A random-effects meta-analysis was computed. Children and adolescents with chronic physical illness or disability were more likely to be victims of bullying in general (odds ratio [OR] = 1.65), particularly physical bullying (OR = 1.47), relational bullying (OR = 1.47), verbal bullying (OR = 1.67), cyberbullying (OR = 1.39), and illness-specific teasing (OR = 5.29). They were also more likely to be bullies in general (OR = 1.28), as well physical (OR = 1.38) and relational bullies (OR = 1.13). The effect sizes varied across different illnesses and disabilities and, in part, by visibility of the disease, school type, and year of assessment. Although most between-group differences tend to be small, some form of intervention is needed to reduce bullying among children and adolescents with chronic physical illnesses and/or physical or sensory disabilities, and illness-specific weight- and appearance-related teasing in particular. © The Author 2016. Published by Oxford University Press on behalf of the Society of Pediatric Psychology. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com

[Chronic pulmonary diseases: point of view of partners and their assessments with regard to the effects of lung sports].

PubMed

Nell, C; Kehr, K; Hildebrandt, O; Sohrabi, K; Cassel, W; Greulich, T; Koehler, K-I; Koehler, U

2011-12-01

Chronic diseases of the respiratory organs have, besides restrictions of lung function, also physical, mental and social consequences. The chronic disease impacts negatively not only the patient's own quality of life but also that of his/her partner and/or relative. As treatment modalities, besides drug therapy, above all outpatient rehabilitation measures have proved to be effective. In this pilot study we sought answers to three questions: (i) How is the quality of life of the patient's partner and/or relative influenced by the disease? How does the partner/relative assess the effect of the disease on the chronically ill patient? How does the partner/relative assess the effect of lung sports on the chronically ill patient? A specially conceived questionnaire was given to the partners/relatives of 25 patients with chronic pulmonary diseases. The patients, 23 with chronic obstructive pulmonary disease and 2 with pulmonary fibrosis, have been participating in lung sports once a week for more than three years. The average age of the patients was 67 years. The patients' illness also negatively influenced the quality of life of the partner to a considerable extent. The impact of the patients' pulmonary disease on the healthy partner was assessed as being rather moderate. Restrictions of social life were essentially influenced by the amount of assistance required by the pulmonary patient. The therapeutic effects of lung sports on the well-being of the patient were aways considered to be positive by the respective partner/relatives. A chronic pulmonary illness also has a negative influence on the partner/relative's quality of life. The necessity for extensive assistance in daily life is accompanied by a considerable negative impact on the partner's quality of life. According to the opinion of the partner/relative, lung sports have positive effects in all of the chronically ill patient's fields of life. © Georg Thieme Verlag KG Stuttgart · New York.

Issues in Sexuality for Adolescents with Chronic Illnesses and Disabilities. CYDLINE Reviews.

ERIC Educational Resources Information Center

Minnesota Univ., Minneapolis. National Center for Youth with Disabilities.

This annotated bibliography focuses on sexuality issues regarding adolescents and young adults with disabilities and chronic illnesses. The resources are grouped into the following categories: psychosocial development (23 references); attitudes and knowledge (11 references); sex education (34 references); sexual abuse (four references);…

e-Patients Perceptions of Using Personal Health Records for Self-management Support of Chronic Illness.

PubMed

Gee, Perry M; Paterniti, Debora A; Ward, Deborah; Soederberg Miller, Lisa M

2015-06-01

Chronic illness self-management is largely moving from healthcare professionals and into the hands of the patient. One tool that has been promoted to facilitate self-management support of chronic illness by policymakers, health advocates, providers, and consumers is the personal health record. Little is known about how consumers effectively use personal health records for self-management support and for productive patient-provider interactions. The purpose of this study was to learn from chronically ill engaged, experienced, and educated (e-patient) adults how and why they use personal health records for self-management support and productive patient-provider interactions. Eighteen purposively selected consumers were interviewed in two communities. Qualitative description methods were used, and we used a grounded theory approach to analyzing interview data, which was digitally recorded and transcribed verbatim. We identified four major thematic categories that capture the perceptions of the chronically ill using personal health records: (1) patient engagement and health self-management, (2) access to and control over personal health data, (3) promotion of productive communication, and (4) opportunities for training and education. Knowledge gained from the e-patient personal health record users suggest that making improvements to the portal system and providing education to consumers and providers will increase the utility among the experienced users and encourage new users to embrace adoption and use.

Cost and economic burden of illness over 15 years in Nepal: A comparative analysis.

PubMed

Swe, Khin Thet; Rahman, Md Mizanur; Rahman, Md Shafiur; Saito, Eiko; Abe, Sarah K; Gilmour, Stuart; Shibuya, Kenji

2018-01-01

With an increasing burden of non-communicable disease in Nepal and limited progress towards universal health coverage, country- and disease-specific estimates of financial hardship related to healthcare costs need to be evaluated to protect the population effectively from healthcare-related financial burden. To estimate the cost and economic burden of illness and to assess the inequality in the financial burden due to catastrophic health expenditure from 1995 to 2010 in Nepal. This study used nationally representative Nepal Living Standards Surveys conducted in 1995 and 2010. A Bayesian two-stage hurdle model was used to estimate average cost of illness and Bayesian logistic regression models were used to estimate the disease-specific incidence of catastrophic health payment and impoverishment. The concentration curve and index were estimated by disease category to examine inequality in healthcare-related financial hardship. Inflation-adjusted mean out-of-pocket (OOP) payments for chronic illness and injury increased by 4.6% and 7.3%, respectively, while the cost of recent acute illness declined by 1.5% between 1995 and 2010. Injury showed the highest incidence of catastrophic expenditure (30.7% in 1995 and 22.4% in 2010) followed by chronic illness (12.0% in 1995 and 9.6% in 2010) and recent acute illness (21.1% in 1995 and 7.8% in 2010). Asthma, diabetes, heart conditions, malaria, jaundice and parasitic illnesses showed increased catastrophic health expenditure over time. Impoverishment due to injury declined most (by 12% change in average annual rate) followed by recent acute illness (9.7%) and chronic illness (9.6%) in 15 years. Inequality analysis indicated that poorer populations with recent acute illness suffered more catastrophic health expenditure in both sample years, while wealthier households with injury and chronic illnesses suffered more catastrophic health expenditure in 2010. To minimize the economic burden of illness, several approaches need to be adopted, including social health insurance complemented with an upgraded community-based health insurance system, subsidy program expansion for diseases with high economic burden and third party liability motor insurance to reduce the economic burden of injury.

Cost and economic burden of illness over 15 years in Nepal: A comparative analysis

PubMed Central

Rahman, Md. Mizanur; Rahman, Md. Shafiur; Saito, Eiko; Abe, Sarah K.; Gilmour, Stuart; Shibuya, Kenji

2018-01-01

Background With an increasing burden of non-communicable disease in Nepal and limited progress towards universal health coverage, country- and disease-specific estimates of financial hardship related to healthcare costs need to be evaluated to protect the population effectively from healthcare-related financial burden. Objectives To estimate the cost and economic burden of illness and to assess the inequality in the financial burden due to catastrophic health expenditure from 1995 to 2010 in Nepal. Methods This study used nationally representative Nepal Living Standards Surveys conducted in 1995 and 2010. A Bayesian two-stage hurdle model was used to estimate average cost of illness and Bayesian logistic regression models were used to estimate the disease-specific incidence of catastrophic health payment and impoverishment. The concentration curve and index were estimated by disease category to examine inequality in healthcare-related financial hardship. Findings Inflation-adjusted mean out-of-pocket (OOP) payments for chronic illness and injury increased by 4.6% and 7.3%, respectively, while the cost of recent acute illness declined by 1.5% between 1995 and 2010. Injury showed the highest incidence of catastrophic expenditure (30.7% in 1995 and 22.4% in 2010) followed by chronic illness (12.0% in 1995 and 9.6% in 2010) and recent acute illness (21.1% in 1995 and 7.8% in 2010). Asthma, diabetes, heart conditions, malaria, jaundice and parasitic illnesses showed increased catastrophic health expenditure over time. Impoverishment due to injury declined most (by 12% change in average annual rate) followed by recent acute illness (9.7%) and chronic illness (9.6%) in 15 years. Inequality analysis indicated that poorer populations with recent acute illness suffered more catastrophic health expenditure in both sample years, while wealthier households with injury and chronic illnesses suffered more catastrophic health expenditure in 2010. Conclusion To minimize the economic burden of illness, several approaches need to be adopted, including social health insurance complemented with an upgraded community-based health insurance system, subsidy program expansion for diseases with high economic burden and third party liability motor insurance to reduce the economic burden of injury. PMID:29617393

Special populations: care of the critically ill and injured during pandemics and disasters: CHEST consensus statement.

PubMed

Dries, David; Reed, Mary Jane; Kissoon, Niranjan; Christian, Michael D; Dichter, Jeffrey R; Devereaux, Asha V; Upperman, Jeffrey S

2014-10-01

Past disasters have highlighted the need to prepare for subsets of critically ill, medically fragile patients. These special patient populations require focused disaster planning that will address their medical needs throughout the event to prevent clinical deterioration. The suggestions in this article are important for all who are involved in large-scale disasters or pandemics with multiple critically ill or injured patients, including frontline clinicians, hospital administrators, and public health or government officials. Key questions regarding the care of critically ill or injured special populations during disasters or pandemics were identified, and a systematic literature review (1985-2013) was performed. No studies of sufficient quality were identified. Therefore, the panel developed expert opinion-based suggestions using a modified Delphi process. The panel did not include pediatrics as a separate special population because pediatrics issues are embedded in each consensus document. Fourteen suggestions were formulated regarding the care of critically ill and injured patients from special populations during pandemics and disasters. The suggestions cover the following areas: defining special populations for mass critical care, special population planning, planning for access to regionalized service for special populations, triage and resource allocation of special populations, therapeutic considerations, and crisis standards of care for special populations. Chronically ill, technologically dependent, and complex critically ill patients present a unique challenge to preparing and implementing mass critical care. There are, however, unique opportunities to engage patients, primary physicians, advocacy groups, and professional organizations to lessen the impact of disaster on these special populations.

[Illness behavior in chronic pain].

PubMed

Lavielle, Pilar; Clark, Patricia; Martínez, Homero; Mercado, Francisco; Ryan, Gery

2008-01-01

To describe the illness behaviour in patients with chronic pain. We conducted semi-structured interviews to 53 patients during 2000, in a tertiary care center. We explored their initial interpretations, responses and subsequent practices to chronic pain, until they received a diagnosis that satisfied them. Illness behaviour was determined by pain intensity and disability; beliefs regarding pain causes, trust in social networks, and quality and satisfaction with the health care systems. In terms of the decision to seek care, the first option was to go to the popular sector, followed by consulting a general physician, and as last resort, to go to a tertiary care center ("with a specialist"). Illness behaviour should be conceptualized as a process, which combines the use of different health care sectors by the same subjects, as a result of care provided sequentially by each previous sector.

Disease management and the Medicare Modernization Act: "It's the insurance, stupid".

PubMed

Sidorov, Jaan; Schlosberg, Claudia

2005-12-01

While definitions of "disease management" (DM) emphasize quality of care for populations with chronic illness, proponents argue it reduces healthcare costs. Buyers may find disease management organizations' (DMOs') use of clinical guidelines, physician collaboration, and promotion of patient self-management intuitively sound, but it is performance guarantees, combined with retrospective effectiveness cost studies, that have driven DMOs' penetration of the commercial insurance market with revenues that exceed $500 million per year. The success of DMOs contributed to the creation of the Chronic Care Improvement Program (CCIP), which is designed to prospectively test the impact of DM on both the quality and cost of care for fee-for-service Medicare beneficiaries with chronic illness. This may lead to an expansion of DM in Medicare, and even greater opportunities for DMOs beyond the $10 billion in 10- year projected growth. For community-based physicians caring for patients with chronic illness, the sharpened focus on chronic care and the growth of DMOs creates some potential advantages. These include more time to treat more patients with acute illness, lower practice costs, opportunities to collaborate over quality, and a greater ability to achieve quality targets set by pay-for-performance arrangements.

Exercise Prevents Mental Illness

NASA Astrophysics Data System (ADS)

Purnomo, K. I.; Doewes, M.; Giri, M. K. W.; Setiawan, K. H.; Wibowo, I. P. A.

2017-03-01

Multiple current studies show that neuroinflammation may contribute to mental illness such as depression, anxiety, and mood disorder. Chronic inflammation in peripheral tissues is indicated by the increase of inflammatory marker like cytokine IL-6, TNF-α, and IL-1β. Pro-inflammatory cytokine in peripheral tissues can reach brain tissues and activate microglia and it causes neuroinflammation. Psychological stress may led peripheral and central inflammation. Activated microglia will produce pro-inflammatory cytokine, ROS, RNS, and tryptophan catabolizes. This neuroinflammation can promote metabolism changes of any neurotransmitter, such as serotonin, dopamine, and glutamate that will influence neurocircuit in the brain including basal ganglia and anterior cingulated cortex. It leads to mental illness. Exercise give contribution to reduce tissue inflammation. When muscle is contracting in an exercise, muscle will produce the secretion of cytokine like IL-6, IL-1ra, and IL-10. It will react as anti-inflammation and influence macrophage, T cell, monosit, protein Toll-Like Receptor (TLR), and then reduce neuroinflammation, characterised by the decrease of pro-inflammatory cytokine and prevent the activation of microglia in the brain. The objective of the present study is to review scientific articles in the literature related to the contribution of exercise to prevent and ease mental illness.

Children with Diabetes: Peer Status, Academic Achievement, and Behavior Problems.

ERIC Educational Resources Information Center

Childers, Glenna J.; Carroll, James L.

While the clinical literature frequently asserts that chronic illness negatively affects children's social development, data in support of such assertions are almost without exception obtained in clinical settings from children with chronic illness and their parents, without data from the school or community environment and without control or…

Guidelines and Procedures for Meeting the Specialized Physical Health Care Needs of Pupils.

ERIC Educational Resources Information Center

Lunden, Janet, Ed.

This monograph presents the California State guidelines for providing physical health care services within the public school setting. Part I addresses administrative concerns. Included are sections on: education and chronic illness; professional roles; referral and evaluation; guidelines and procedures for transporting chronically ill pupils;…

Chronically Ill Children: A Psychologically and Emotionally Deviant Population?

ERIC Educational Resources Information Center

Tavormina, J. B.; And Others

To investigate vulnerability to psychological and emotional stress among chronically ill children, a battery of personality tests was selectively administered to 144 children (5- to 19-years-old) afflicted with one of the following conditions: diabetes, asthma, cystic fibrosis, or hearing impairment. Analyses centered on comparisons of norms…

Psychological and Spiritual Factors in Chronic Illness.

ERIC Educational Resources Information Center

Leifer, Ron

1996-01-01

Asserts the importance of psychological and spiritual factors in the treatment of chronic illness. Discusses the inevitably of sickness, old age, and death, as well as the presence of the physician, patience, pain, and hope. Maintains that reflection on these qualities can benefit both the physician and patient. (MJP)

Adolescents with Chronic Illnesses: Issues for School Personnel. CYDLINE Reviews.

ERIC Educational Resources Information Center

Minnesota Univ., Minneapolis. National Center for Youth with Disabilities.

The annotated bibliography is intended to give classroom teachers and educational planners background information and resource materials on the psychosocial and health concerns of adolescents with chronic illnesses. The 26 bibliographic citations date from 1980 to 1988 and are grouped into the following categories: general medical and social…

Recreation and Leisure: Issues for Adolescents with Chronic Illnesses and Disabilities. CYDLINE Reviews.

ERIC Educational Resources Information Center

Minnesota Univ., Minneapolis. National Center for Youth with Disabilities.

This bibliography presents 162 annotated references (including bibliographic materials, training and educational materials, and programs) about issues of recreation and leisure for adolescents and young adults with chronic illnesses and disabilities. Each reference usually contains a full bibliographic citation, a brief descriptive abstract, and…

Introduction to Health Promotion for People with Chronic Illness and Disability

ERIC Educational Resources Information Center

Chan, Fong; Chiu, Chung-Yi; Bezyak, Jill L.; Keegan, John

2012-01-01

Health promotion has received increasing attention in rehabilitation counseling research. Health promotion research contributes to theory building and provides the foundation for empirically supported interventions that can improve the health-related quality of life and employment outcomes of people with chronic illness and disability. In this…

Peer Relationships Among Chronically Ill Children.

ERIC Educational Resources Information Center

Johnson, Suzanne Bennett

As new treatments allow chronically ill children to live longer, the relationship between the child's psychological state and his physical condition becomes paramount. Diabetics (N=42) between the ages of 10 and 21 answered questions about their disease. While most respondents did not feel that diabetes had affected relationships with peers,…

Psychological Adjustment and Neuropsychological Performance in Diabetic Patients.

ERIC Educational Resources Information Center

Skenazy, Judy A.; Bigler, Erin D.

1985-01-01

Compared diabetic (N=39) with nondiabetic chronic illness patients (N=20) and healthy controls (N=24). The chronic illness and the diabetic groups had significant elevations on the Hypochondriasis, Depression, and Hysteria scales of the Feschingbauer Abbreviated MMPI. For diabetics, results demonstrated a negligible effect of poor adjustment on…

Quality of Life and School Absenteeism in Children with Chronic Illness

ERIC Educational Resources Information Center

Emerson, Natacha D.; Distelberg, Brian; Morrell, Holly E. R.; Williams-Reade, Jackie; Tapanes, Daniel; Montgomery, Susanne

2016-01-01

Objective: Children and adolescents with a chronic illness (CI) tend to demonstrate diminished physical and social functioning, which contribute to school attendance issues. We investigated the role of social and physical functioning in reducing school absenteeism in children participating in Mastering Each New Direction (MEND), a family-based…

A Comparison of Somatic Compliants among Depressed and Non-Depressed Older Persons.

ERIC Educational Resources Information Center

Waxman, Howard; And Others

1985-01-01

Examined the relationship among somatic complaints, chronic medical illness, and depression in 127 community elderly. Depression and chronic medical illness were significant contributors to somatic complaining both alone and in interaction. Demographic variables and social supports were largely unrelated to depression, somatic complaints, or…

Managing Chronic Illness in the Classroom.

ERIC Educational Resources Information Center

Wishnietsky, Dorothy Botsch; Wishnietsky, Dan H.

An important but often overlooked member of a student's health care team is the teacher. This text covers ways to help teachers and administrators understand the special needs of students suffering from a chronic illness, how to recognize health events that may interfere with learning, and suggestions for appropriate interventions. The book opens…

MAPP: A Multimedia Instructional Program for Youths with Chronic Illness.

ERIC Educational Resources Information Center

Murdock, Peggy O'Hara; McClure, Christopher; Lage, Onelia G.; Sarkar, Dilip; Shaw, Kimberly

The Multimedia Approach to Pregnancy Prevention (MAPP) is an expert intelligence multimedia program administered in outpatient and inpatient clinics in the University of Miami/Jackson Children's Hospital (Florida). The target population for the MAPP program is youths aged 9-14 years, diagnosed with chronic illnesses (asthma, diabetes, and sickle…

A comparison of adherence to hypoglycemic medications between Type 2 diabetes patients with and without serious mental illness

PubMed Central

Kreyenbuhl, Julie; Leith, Jaclyn; Medoff, Deborah R.; Fang, LiJuan; Dickerson, Faith B.; Brown, Clayton H.; Goldberg, Richard W.; Potts, Wendy; Dixon, Lisa B.

2011-01-01

Inadequate self-management of chronic medical conditions like Type 2 diabetes may play a role in the poor health status of individuals with serious mental illnesses. We compared adherence to hypoglycemic medications and blood glucose control between 44 diabetes patients with a serious mental illness and 30 patients without a psychiatric illness. The two groups did not differ in their ability to manage a complex medication regimen as assessed by a performance-based measure of medication management capacity. However, significantly fewer patients with a mental illness self-reported nonadherence to their hypoglycemic regimens compared to those without a mental illness. Although individuals with mental illnesses also had better control of blood glucose, this metabolic parameter was not correlated with adherence to hypoglycemic medications in either patient group. The experience of managing a chronic mental illness may confer advantages to individuals with serious mental illnesses in the self-care of co-occurring medical conditions like Type 2 diabetes. PMID:21459458

Peer-based behavioural strategies to improve chronic disease self-management and clinical outcomes: evidence, logistics, evaluation considerations and needs for future research

PubMed Central

2010-01-01

The diagnosis of a chronic disease such as diabetes generally evokes strong emotions and often brings with it the need to make changes in lifestyle behaviours, such as diet, exercise, medication management and monitoring clinical and metabolic parameters. The diagnosis thus affects not only the person diagnosed but also the family members. Chronic illnesses are largely self-managed with ∼99% of the care becoming the responsibility of patients and their families or others involved in the daily management of their illnesses. While the responsibility for outcomes, such as metabolic control and chronic complications, are shared with the health care team, the daily decisions and behaviours adopted by patients clearly have a strong influence on their future health and well-being. While diabetes self-management education is essential, it is generally not sufficient for patients to sustain behaviours and cope with a lifetime of diabetes. Peers have been proposed as one method for assisting patients to deal with the behavioural and affective components of diabetes and to provide ongoing self-management support. This paper first describes effective behavioural strategies in diabetes, based on multiple studies and/or meta-analyses, and then provides examples of their use by peers or in peer-based programmes in diabetes. A comprehensive search using the MEDLINE® and Cinahl databases was conducted. Key search terms included peer mentors, peer leaders, peer educators, lay health workers and community health workers. Studies that clearly identified behavioural strategies used by peers were included. PMID:19509083

Peer-based behavioural strategies to improve chronic disease self-management and clinical outcomes: evidence, logistics, evaluation considerations and needs for future research.

PubMed

Funnell, Martha Mitchell

2010-06-01

The diagnosis of a chronic disease such as diabetes generally evokes strong emotions and often brings with it the need to make changes in lifestyle behaviours, such as diet, exercise, medication management and monitoring clinical and metabolic parameters. The diagnosis thus affects not only the person diagnosed but also the family members. Chronic illnesses are largely self-managed with approximately 99% of the care becoming the responsibility of patients and their families or others involved in the daily management of their illnesses. While the responsibility for outcomes, such as metabolic control and chronic complications, are shared with the health care team, the daily decisions and behaviours adopted by patients clearly have a strong influence on their future health and well-being. While diabetes self-management education is essential, it is generally not sufficient for patients to sustain behaviours and cope with a lifetime of diabetes. Peers have been proposed as one method for assisting patients to deal with the behavioural and affective components of diabetes and to provide ongoing self-management support. This paper first describes effective behavioural strategies in diabetes, based on multiple studies and/or meta-analyses, and then provides examples of their use by peers or in peer-based programmes in diabetes. A comprehensive search using the MEDLINE and Cinahl databases was conducted. Key search terms included peer mentors, peer leaders, peer educators, lay health workers and community health workers. Studies that clearly identified behavioural strategies used by peers were included.

The Traumatogenic Dynamics of Internalized Stigma of Mental Illness Among Arab American, Muslim, and Refugee Clients.

PubMed

Kira, Ibrahim A; Lewandowski, Linda; Ashby, Jeffrey S; Templin, Thomas; Ramaswamy, Vidya; Mohanesh, Jamal

2014-07-01

Understanding the dynamics of mental health stigma through existing frameworks, especially in minorities with higher stigma, is problematic. There is a need to reconceptualize stigma, particularly in highly traumatized groups. The current study examines the validity of a new development-based trauma framework that conceptualizes stigma as a type III chronic trauma that contributes to negative mental health effects. This framework proposes that public stigma is a unique chronic traumatic stress that mediates the effects of similar trauma types in mental health patients. To test this proposition, this study explores the relationships between internalized stigma of mental illness (ISMI), different trauma types, and posttrauma spectrum disorders. ISMI, posttraumatic stress disorder, other posttrauma spectrum disorders, and cumulative trauma measures were administered to a sample of 399 mental health patients that included Arab (82%), Muslim (84%), and refugee (31%), as well as American patients (18%). Age in the sample ranged from 18 to 76 years (M = 39.66, SD = 11.45), with 53.5% males. Hierarchical multiple regression, t tests, and path analyses were conducted. Results indicated that ISMI predicted posttraumatic stress disorder and other posttrauma spectrum disorders after controlling for cumulative trauma. ISMI was associated with other chronic collective identity traumas. While Arab Americans, Muslims, and refugees had higher ISMI scores than other Americans, the elevated chronic trauma levels of these groups were significant predictors of these differences. The results provide evidence to support ISMI traumatology model. Implications of the results for treating victims of ISMI, especially Arab Americans, Muslims and refugees are discussed. © The Author(s) 2014.

Ethnic differences in correlates of suicidal behavior among women seeking help for intimate partner violence.

PubMed

Cavanaugh, Courtenay E; Messing, Jill T; Eyzerovich, Evelina; Campbell, Jacquelyn C

2015-01-01

Women abused by an intimate partner are at risk of engaging in nonfatal suicidal behavior and suicidal communication (NSBSC). No studies have examined ethnic differences in correlates of NSBSC among abused women. This secondary data analytic study examined whether correlates of NSBSC previously reported among a mixed ethnic sample of women seeking help for abuse by a male intimate partner differed for those who self-identified as Latina (N = 340), African American (N = 184), or European American (N = 67). Logistic regression was used to examine correlates of NSBSC separately among Latina, African American, and European American women. More severe violence by a male intimate partner, having a chronic or disabling illness, being younger, and being unemployed were positively associated with NSBSC in bivariate analyses among Latina women, but unemployment did not remain significantly associated with NSBSC in the multiple logistic regression. There were no significant correlates of NSBSC for African American women. Having a chronic illness was significantly associated with NSBSC among European American women. Findings suggest the need for culturally tailored suicide prevention interventions and studies that examine risk and protective factors for NSBSC among a diversity of women abused by male intimate partners.

A regressional analysis of maladaptive rumination, illness perception and negative emotional outcomes in Asian patients suffering from depressive disorder.

PubMed

Lu, Yanxia; Tang, Catherine; Liow, Chiew Shan; Ng, Winnie Wei Ni; Ho, Cyrus Su Hui; Ho, Roger Chun Mun

2014-12-01

Although illness perception has been shown to be associated with illness outcomes in various chronic physical diseases, the association of illness perception and rumination are not well elucidated in mental disorders. This study aims to investigate the mediational effects of adaptive and maladaptive rumination in the relationship between illness perception and negative emotions (depression, anxiety and stress) in male and female patients (N=110) suffering from depressive disorders. The results showed that maladaptive rumination mediated the relationship between illness perception and negative emotions in both male and female depressive patients. However, no mediating effects of adaptive rumination were found in the relationship between illness perception and negative emotion. Maladaptive rumination mediated the relationship between perceived identity, chronicity of illness, consequences of illness and emotional representation of illness and negative emotions in males. It also mediated the relationship between perceived identity and emotional representation of illness and negative emotions in females. The results, possible clinical implications and limitations of this study are also discussed. Copyright © 2014 Elsevier B.V. All rights reserved.

Distributions of Autocorrelated First-Order Kinetic Outcomes: Illness Severity

PubMed Central

Englehardt, James D.

2015-01-01

Many complex systems produce outcomes having recurring, power law-like distributions over wide ranges. However, the form necessarily breaks down at extremes, whereas the Weibull distribution has been demonstrated over the full observed range. Here the Weibull distribution is derived as the asymptotic distribution of generalized first-order kinetic processes, with convergence driven by autocorrelation, and entropy maximization subject to finite positive mean, of the incremental compounding rates. Process increments represent multiplicative causes. In particular, illness severities are modeled as such, occurring in proportion to products of, e.g., chronic toxicant fractions passed by organs along a pathway, or rates of interacting oncogenic mutations. The Weibull form is also argued theoretically and by simulation to be robust to the onset of saturation kinetics. The Weibull exponential parameter is shown to indicate the number and widths of the first-order compounding increments, the extent of rate autocorrelation, and the degree to which process increments are distributed exponential. In contrast with the Gaussian result in linear independent systems, the form is driven not by independence and multiplicity of process increments, but by increment autocorrelation and entropy. In some physical systems the form may be attracting, due to multiplicative evolution of outcome magnitudes towards extreme values potentially much larger and smaller than control mechanisms can contain. The Weibull distribution is demonstrated in preference to the lognormal and Pareto I for illness severities versus (a) toxicokinetic models, (b) biologically-based network models, (c) scholastic and psychological test score data for children with prenatal mercury exposure, and (d) time-to-tumor data of the ED01 study. PMID:26061263

Evaluating Patient Activation Measure (PAM) Scores and Readmission Rates Following Implementation of a Nurse-Initiated Multi-Faceted Strategy for Patients on a U.S. Navy Inpatient Oncology Unit: A Quality Improvement Project

DTIC Science & Technology

2016-06-30

5b. GRANT NUMBER N/A of a Nurse-Initiated Multi-Faceted Strategy for Patients on a U.S. Navy Inpatient Oncology Unit: A Quality...13. SUPPLEMENTARY NOTES N/A 14. ABSTRACT Background: Chronically ill patients often experience multiple hospitalizations. Oncology patients...have been shown to have more readmissions to the hospital than non- oncology patients. Recent reports estimate a $17.4 billion cost burden is

Recurrent Pyroglutamic Acidosis Related to Therapeutic Acetaminophen.

PubMed

Alhourani, Hazem M; Kumar, Aneel; George, Lekha K; Sarwar, Tahira; Wall, Barry M

2018-04-01

Pyroglutamic acid, an intermediate in glutathione metabolism, can lead to elevated anion gap metabolic acidosis as rare complication of acetaminophen therapy in adults. Acquired pyroglutamic acidosis has been observed primarily in settings associated with glutathione deficiency. Risk factors for glutathione deficiency include critical illness, chronic liver or kidney disease, advanced age, female gender, alcohol abuse, malnutrition, pregnancy, antiepileptic drugs, and chronic acetaminophen use. Diagnosis of pyroglutamic acidosis requires both the exclusion of common etiologies of increased anion gap metabolic acidosis and a high index of suspicion. Treatment involves discontinuation of acetaminophen, supportive care, and addressing risk factors for glutathione deficiency. The current report describes an ambulatory patient with multiple risk factors for glutathione deficiency, who developed recurrent pyroglutamic acidosis due to acetaminophen use with therapeutic blood levels of acetaminophen. Published by Elsevier Inc.

Xerostomia in the Geriatric Patient: Causes, Oral Manifestations, and Treatment.

PubMed

Ouanounou, Aviv

2016-05-01

Xerostomia, or dry mouth, is common among elderly people and is typically associated with decreased salivary gland function. Causes of xerostomia in the geriatric population have been attributed to the use of medications, chronic disorders, and radiation therapy to the head and neck region. Patients with chronic xerostomia may have multiple oral and dental consequences such as dental caries, periodontal disease, fungal infections, ill-fitting dentures, and taste alterations. Xerostomia can seriously impact quality of life and may alter speech, eating, and swallowing. Current therapeutics for the management of xerostomia are grouped as local and systemic salivary stimulation. This article reviews the main reasons for xerostomia and the complications it causes in the oral cavity. It also discusses the pharmacologic and nonpharmacologic agents used to treat this condition.

Factors associated with self-esteem in persons with morbid obesity and in persons with chronic obstructive pulmonary disease: a cross-sectional study.

PubMed

Bonsaksen, Tore; Fagermoen, May Solveig; Lerdal, Anners

2015-01-01

Living with chronic illnesses can be stressful and may negatively impact persons' self-esteem. Personal factors, like self-efficacy and illness perceptions, and also factors related to the environment, activity, and participation may be associated with self-esteem in chronic illness populations. This cross-sectional comparative study explored sociodemographic variables, work, physical activity, illness perceptions, and general self-efficacy in relation to self-esteem in persons with morbid obesity and in persons with chronic obstructive pulmonary disease (COPD). The study had a cross-sectional design. A total of 223 eligible participants were recruited from patient education courses, and data were collected at baseline. Self-esteem was measured with The Rosenberg self-esteem scale; the general self-efficacy scale was used to measure self-efficacy, and brief illness perception questionnaire was also used. This is an instrument assessing cognitions about the illness and emotional responses towards it. Multivariate linear regression was used in the statistical analyses. In obese participants (n = 134), higher self-esteem was associated with lower emotional response, a shorter timeline, and higher general self-efficacy. In COPD participants (n = 89), higher self-esteem was associated with higher general self-efficacy. The independent variables accounted for 42.9% (morbid obesity) and 49.4% (COPD) of the self-esteem variance. In participants in both illness groups, higher self-efficacy was associated with increased self-esteem. A shorter timeline and lower emotional response to illness was related to higher self-esteem only for the obese participants. The results indicate that believing in one's capacity to cope with everyday challenges is important for self-esteem in persons with morbid obesity and in persons with COPD, whereas illness perceptions related to the duration of illness and the coping with emotions also is important for self-esteem in persons with morbid obesity.

Depersonalisation and schizophrenia: Comparative study of initial and multiple episodes of schizophrenia.

PubMed

Luque-Luque, Rogelio; Chauca-Chauca, Geli Marie; Alonso-Lobato, Pablo; Jaen-Moreno, M Jose

2016-01-01

The phenomena of depersonalisation/derealisation have classically been associated with the initial phases of psychosis, and it is assumed that they would precede (even by years) the onset of clinical psychosis, being much more common in the prodromal and acute phases of the illness. The aims of the present study are to analyse the differences in depersonalisation/derealisation between patients with initial and multiple episodes and the factors that could influence this. A descriptive, controlled and cross-sectional study of 48 patients diagnosed with paranoid schizophrenia (20 with an initial episode and 28 with multiple episodes). These patients were assessed using scales such as the Cambridge Depersonalization Scale, the Positive and Negative Symptom Scale, and the Dissociative Experiences Scale. Participants with initial episodes score higher on both the Cambridge Depersonalisation Scale, and the subscale of the Dissociative Experiences Scale that evaluates such experiences. There were no associations between these types of experience and the positive symptoms subscale of the Positive and Negative Symptom Scale. Depersonalisation/derealisation experiences appear with greater frequency, duration and intensity in patients in the early stages of the illnesses, gradually decreasing as they become chronic. Copyright © 2016 SEP y SEPB. Published by Elsevier España. All rights reserved.

Divorce and Childhood Chronic Illness: A Grounded Theory of Trust, Gender, and Third-Party Care Providers.

PubMed

Russell, Luke T; Coleman, Marilyn; Ganong, Lawrence H; Gayer, Debra

2016-05-01

Divorced parents face distinct challenges in providing care for chronically ill children. Children's residence in two households necessitates the development of family-specific strategies to ensure coparents' supervision of regimen adherence and the management of children's health care. Utilizing a risk and resilience perspective, a grounded theory study was conducted with 14 divorced parents of children with chronic illnesses. The importance of trust, gender, and relationships with third-party care providers emerged as key themes related to the development of effective coparenting relationships for maintaining children's health. Divorced parents were best able to support the management of their children's chronic conditions when care providers operated as neutral third parties and intermediaries. Collaborative family care may require health care practitioners to avoid being drawn into contentious inter-parental conflicts. © The Author(s) 2016.

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).

The central role of hypothalamic inflammation in the acute illness response and cachexia.

PubMed

Burfeind, Kevin G; Michaelis, Katherine A; Marks, Daniel L

2016-06-01

When challenged with a variety of inflammatory threats, multiple systems across the body undergo physiological responses to promote defense and survival. The constellation of fever, anorexia, and fatigue is known as the acute illness response, and represents an adaptive behavioral and physiological reaction to stimuli such as infection. On the other end of the spectrum, cachexia is a deadly and clinically challenging syndrome involving anorexia, fatigue, and muscle wasting. Both of these processes are governed by inflammatory mediators including cytokines, chemokines, and immune cells. Though the effects of cachexia can be partially explained by direct effects of disease processes on wasting tissues, a growing body of evidence shows the central nervous system (CNS) also plays an essential mechanistic role in cachexia. In the context of inflammatory stress, the hypothalamus integrates signals from peripheral systems, which it translates into neuroendocrine perturbations, altered neuronal signaling, and global metabolic derangements. Therefore, we will discuss how hypothalamic inflammation is an essential driver of both the acute illness response and cachexia, and why this organ is uniquely equipped to generate and maintain chronic inflammation. First, we will focus on the role of the hypothalamus in acute responses to dietary and infectious stimuli. Next, we will discuss the role of cytokines in driving homeostatic disequilibrium, resulting in muscle wasting, anorexia, and weight loss. Finally, we will address mechanisms and mediators of chronic hypothalamic inflammation, including endothelial cells, chemokines, and peripheral leukocytes. Copyright © 2015 Elsevier Ltd. All rights reserved.

Common and unique associated factors for medically unexplained chronic widespread pain and chronic fatigue☆

PubMed Central

McBeth, J.; Tomenson, B.; Chew-Graham, C.A.; Macfarlane, G.J.; Jackson, J.; Littlewood, A.; Creed, F.H.

2015-01-01

Objective Chronic widespread pain and chronic fatigue share common associated factors but these associations may be explained by the presence of concurrent depression and anxiety. Methods We mailed questionnaires to a randomly selected sample of people in the UK to identify participants with chronic widespread pain (ACR 1990 definition) and those with chronic fatigue. The questionnaire assessed sociodemographic factors, health status, healthcare use, childhood factors, adult attachment, and psychological stress including anxiety and depression. To identify persons with unexplained chronic widespread pain or unexplained chronic fatigue; we examined participant's medical records to exclude medical illness that might cause these symptoms. Results Of 1443 participants (58.0% response rate) medical records of 990 were examined. 9.4% (N = 93) had unexplained chronic widespread pain and 12.6% (N = 125) had unexplained chronic fatigue. Marital status, childhood psychological abuse, recent threatening experiences and other somatic symptoms were commonly associated with both widespread pain and fatigue. No common effect was found for few years of education and current medical illnesses (more strongly associated with chronic widespread pain) or recent illness in a close relative, neuroticism, depression and anxiety scores (more strongly associated with chronic fatigue). Putative associated factors with a common effect were associated with unexplained chronic widespread pain or unexplained chronic fatigue only when there was concurrent anxiety and/or depression. Discussion This study suggests that the associated factors for chronic widespread pain and chronic fatigue need to be studied in conjunction with concurrent depression/anxiety. Clinicians should be aware of the importance of concurrent anxiety or depression. PMID:26652592

Integration of Biosensors and Drug Delivery Technologies for Early Detection and Chronic Management of Illness

PubMed Central

Ngoepe, Mpho; Choonara, Yahya E.; Tyagi, Charu; Tomar, Lomas Kumar; du Toit, Lisa C.; Kumar, Pradeep; Ndesendo, Valence M. K.; Pillay, Viness

2013-01-01

Recent advances in biosensor design and sensing efficacy need to be amalgamated with research in responsive drug delivery systems for building superior health or illness regimes and ensuring good patient compliance. A variety of illnesses require continuous monitoring in order to have efficient illness intervention. Physicochemical changes in the body can signify the occurrence of an illness before it manifests. Even with the usage of sensors that allow diagnosis and prognosis of the illness, medical intervention still has its downfalls. Late detection of illness can reduce the efficacy of therapeutics. Furthermore, the conventional modes of treatment can cause side-effects such as tissue damage (chemotherapy and rhabdomyolysis) and induce other forms of illness (hepatotoxicity). The use of drug delivery systems enables the lowering of side-effects with subsequent improvement in patient compliance. Chronic illnesses require continuous monitoring and medical intervention for efficient treatment to be achieved. Therefore, designing a responsive system that will reciprocate to the physicochemical changes may offer superior therapeutic activity. In this respect, integration of biosensors and drug delivery is a proficient approach and requires designing an implantable system that has a closed loop system. This offers regulation of the changes by means of releasing a therapeutic agent whenever illness biomarkers prevail. Proper selection of biomarkers is vital as this is key for diagnosis and a stimulation factor for responsive drug delivery. By detecting an illness before it manifests by means of biomarkers levels, therapeutic dosing would relate to the severity of such changes. In this review various biosensors and drug delivery systems are discussed in order to assess the challenges and future perspectives of integrating biosensors and drug delivery systems for detection and management of chronic illness. PMID:23771157

Possible illnesses: assessing the health impacts of the Chad Pipeline Project.

PubMed Central

Leonard, Lori

2003-01-01

Health impact assessments associated with large-scale infrastructure projects, such as the Chad-Cameroon Petroleum Development and Pipeline Project, monitor pre-existing conditions and new diseases associated with particular industries or changes in social organization. This paper suggests that illness self-reports constitute a complementary set of benchmarks to measure the health impacts of these projects, and presents data gathered in ongoing household and health service surveys in Ngalaba, a village near a major oilfield in Chad. In an initial 16-week period of weekly data collection, 363 people reported few of the clinically chronic or asymptomatic conditions expected according to health transition theory, and the overall level of illness reporting was low. Illnesses often were described by symptoms or lay diagnoses. Health care practitioners were consulted rarely; when they were, resources for diagnosis and treatment were limited. Clinically acute, short-duration illnesses (e.g. parasitic infections, toothaches, or hernias) were experienced as chronic conditions and were reported week after week. The low levels of illness reporting and lack of clinically chronic conditions are not taken to mean that rural Chadians are healthy. Rather, the patterns of morbidity reflect a particular local ecology in which health services are organized and care dispensed in ways that limit the possibilities for illness in terms of types of illnesses that can be diagnosed and reported, forms illnesses take, and ways in which illnesses are experienced. Illness self-reports are useful adjuncts to "harder" biological measures in HIAs, particularly in the context of large-scale infrastructure projects with explicit development goals. Rather than providing data on the extent to which harm has been mitigated by corporate, state, and donor activities, self-reports show the possibilities of illness in local contexts. PMID:12894327

Physical Illness, Psychiatric Illness, and the Acceptability of Suicide.

ERIC Educational Resources Information Center

Deluty, Robert H.

1989-01-01

Assessed whether attitudes toward suicide vary as function of type of illness that precipitates suicide. College students (N=455) responded to scenarios of suicide victim. Evaluations of suicide were most favorable when it occurred in response to terminal physical illness; less favorable in response to chronic, non-terminal physical illness; and…

Living well: an intervention to improve self-management of medical illness for individuals with serious mental illness.

PubMed

Goldberg, Richard W; Dickerson, Faith; Lucksted, Alicia; Brown, Clayton H; Weber, Elyssa; Tenhula, Wendy N; Kreyenbuhl, Julie; Dixon, Lisa B

2013-01-01

Individuals with serious mental illness have elevated rates of comorbid chronic general medical conditions and may benefit from interventions designed to support illness self-management. This study examined the effectiveness of a modified version of the Chronic Disease Self-Management Program called Living Well for individuals with serious mental illness. A total of 63 mental health consumers with serious mental illness and at least one concurrent chronic general medical condition were randomly assigned to receive the 13-session peer-cofacilitated Living Well intervention or usual care. Participants were evaluated on attitudinal, behavioral, and functional outcomes at baseline, at the end of the intervention, and at a two-month follow-up. Living Well participants showed significant postintervention improvements across a range of attitudinal (self-efficacy and patient activation), behavioral (illness self-management techniques), and functional (physical and emotional well-being and general health functioning) outcomes. Although attenuation of effect was observed for most outcomes at two months postintervention, evidence was found of continued improvement in general self-management behaviors (use of action planning, brainstorming, and problem-solving). Continued advantage was found for the Living Well group in other areas, such as health-related locus of control and reports of healthy eating and physical activity. Receipt of Living Well was associated with a notable decrease in use of the emergency room for medical care, although the between-group difference was not statistically significant. Living Well shows promise in helping mental health consumers more effectively manage chronic general medical conditions and experience improved functioning and well-being.

Illness perceptions of leprosy-cured individuals in Surinam with residual disfigurements - "I am cured, but still I am ill".

PubMed

van Haaren, Mark Ac; Reyme, Melinda; Lawrence, Maggie; Menke, Jack; Kaptein, Ad A

2017-06-01

Objective Leprosy has rarely been the subject of health psychology research despite its substantial impact. Our aim was to explore illness perceptions in patients and their health care providers in Surinam. The Common Sense Model (CSM) was the guiding theoretical model. Design Patients with biomedically cured leprosy and their health care providers completed the B-IPQ and took part in semi-structured interviews. The literature on illness perceptions in patients with leprosy was reviewed. Main outcome measures Patients' B-IPQ scores were compared with samples of patients with other (chronic) illnesses, and with health care providers completing the questionnaire as if they were visibly disfigured patients. Quotations from the semi-structured interviews were used to contextualise the illness perceptions. Results Patients' B-IPQ scores reflected the chronic nature of leprosy and were comparable with those with other chronic illnesses. Health care providers perceived leprosy to have a greater negative impact than did the patients. Perceived understanding of causes differed considerably between patients and health care providers. Conclusion Leprosy continues to be experienced as an illness with major psychological and social consequences such as stigmatisation, even after biomedical cure. Interventions that target patients, health care providers, and society at large may help reduce perceived shame and stigma. The CSM is a helpful theoretical model in studying this population.

Coping with Chronic Illness in Childhood and Adolescence

PubMed Central

Compas, Bruce E.; Jaser, Sarah S.; Dunn, Madeleine J.; Rodriguez, Erin M.

2012-01-01

Chronic illnesses and medical conditions present millions of children and adolescents with significant stress that is associated with risk for emotional and behavioral problems and interferes with adherence to treatment regimens. We review research on the role of child and adolescent coping with stress as an important feature of the process of adaptation to illness. Recent findings support a control-based model of coping that includes primary control or active coping (efforts to act on the source of stress or one’s emotions), secondary control or accommodative coping (efforts to adapt to the source of stress), and disengagement or passive coping (efforts to avoid or deny the stressor). Evidence suggests the efficacy of secondary control coping in successful adaptation to chronic illness in children and adolescents, disengagement coping is associated with poorer adjustment, and findings for primary control coping are mixed. Avenues for future research are highlighted. PMID:22224836

Discontinuing treatment in children with chronic, critical illnesses.

PubMed

Mahon, M M; Deatrick, J A; McKnight, H J; Mohr, W K

2000-03-01

Decisions about optimal treatment for critically ill children are qualitatively different from those related to adults. Technological advances over the past several decades have resulted in myriad treatment options that leave many children chronically, critically ill. These children are often technology dependent. With new technologies and new patient populations comes the responsibility to understand how, when, and why these technologies are applied and when technology should not be used or should be withdrawn. Much has been written about ethical decision making in the care of chronically, critically ill adults and newborns. In this article, relevant factors about the care of children older than neonates are described: standards, decision makers, age of the child, and pain management. A case study is used as a mechanism to explore these issues. Dimensions of futility, discontinuing aggressive treatment, and a consideration of benefits and burdens are integrated throughout the discussion to inform nurse practitioner practice.

[Disease management programs from a health insurer's point of view].

PubMed

Szymkowiak, Christof; Walkenhorst, Karen; Straub, Christoph

2003-06-01

Disease Management Programmes represent a great challenge to the German statutory health insurance system. According to politicians, disease management programmes are an appropriate tool for increasing the level of care for chronically ill patients significantly, while at the same time they can slow down the cost explosion in health care. The statutory health insurers' point of view yields a more refined picture of the chances and risks involved. The chances are that a medical guideline-based, evidence-based, co-operative care of the chronically ill could be established. But also, there are the risks of misuse of disease management programmes and of misallocation of funds due to the ill-advised linkage with the so-called risk compensation scheme (RSA) balancing the sickness funds' structural deficits through redistribution. The nation-wide introduction of disease management programmes appears to be a gigantic experiment whose aim is to change the care of chronically ill patients and whose outcome is unpredictable.

Collaborative Help in Chronic Disease Management: Supporting Individualized Problems

PubMed Central

Huh, Jina; Ackerman, Mark S.

2013-01-01

Coping with chronic illness disease is a long and lonely journey, because the burden of managing the illness on a daily basis is placed upon the patients themselves. In this paper, we present our findings for how diabetes patient support groups help one another find individualized strategies for managing diabetes. Through field observations of face-to-face diabetes support groups, content analysis of an online diabetes community, and interviews, we found several help interactions that are critical in helping patients in finding individualized solutions. Those are: (1) patients operationalize their experiences to easily contextualize and share executable strategies; (2) operationalization has to be done within the larger context of sharing illness trajectories; and (3) the support groups develop common understanding towards diabetes management. We further discuss how our findings translate into design implications for supporting chronic illness patients in online community settings. PMID:25360442

A practice-based information system for multi-disciplinary care of chronically ill patients: what information do we need? The Community Care Coordination Network Database Group.

PubMed Central

Moran, W. P.; Messick, C.; Guerette, P.; Anderson, R.; Bradham, D.; Wofford, J. L.; Velez, R.

1994-01-01

Primary care physicians provide longitudinal care for chronically ill individuals in concert with many other community-based disciplines. The care management of these individuals requires data not traditionally collected during the care of well, or acutely ill individuals. These data not only concern the patient, in the form of patient functional status, mental status and affect, but also pertain to the caregiver, home environment, and the formal community health and social service system. The goal of the Community Care Coordination Network is to build a primary care-based information system to share patient data and communicate patient related information among the community-based multi-disciplinary teams. One objective of the Community Care Coordination Network is to create a Community Care Database for chronically ill individuals by identifying those data elements necessary for efficient multi-disciplinary care. PMID:7949995

Understanding Children with Asthma: Trouble and Triggers

ERIC Educational Resources Information Center

Lim, JungHa; Wood, Beatrice L.; Cheah, PoAnn

2009-01-01

Asthma is one of the most common illnesses of childhood; in the United States, nearly 9% of children have the condition (Federal Interagency Forum on Child and Family Statistics, 2006). Among children with chronic illnesses, asthma is the most common cause for school absence and hospitalization (Akinbami, 2006). Asthma is a chronic disorder of the…

Providing Effective Early Intervention Vocational Rehabilitation at the Community Level

ERIC Educational Resources Information Center

Allaire, Saralynn J.; Niu, Jingbo; Zhu, Yanyan; Brett, Belle

2011-01-01

The purpose of this study was to evaluate the translation of positive research findings about a job retention intervention for persons with chronic illnesses to rehabilitation practice. A program to provide the intervention was developed and marketed in the community. Fifty-seven consumers with chronic illnesses received the intervention provided…

Home Care for Children with Chronic Illnesses and Severe Disabilities: A Bibliography and Resource Guide.

ERIC Educational Resources Information Center

Wells, Alice; And Others

The bibliography and resource guide summarizes relevant research and information on home care for children with disabilities and chronic illnesses, including those with such diagnoses as spina bifida, cerebral palsy, severe mental retardation, acquired immune deficiency syndrome (AIDS), hemophilia, sickle cell anemia, autism, or failure-to-thrive…

Sports and Athletics: Issues for Adolescents with Chronic Illnesses and Disabilities. CYDLINE Reviews.

ERIC Educational Resources Information Center

Minnesota Univ., Minneapolis. National Center for Youth with Disabilities.

This annotated bibliography focuses on issues in sports and athletics for adolescents and young adults with chronic illnesses and disabilities. The listings are drawn from the National Resource Library of the National Center for Youth with Disabilities, which includes journals, books, and non-published materials. The section on bibliographic…

Adolescents with Chronic Illnesses--Issues for School Personnel. Second Edition. CYDLINE Reviews.

ERIC Educational Resources Information Center

Minnesota Univ., Minneapolis. National Center for Youth with Disabilities.

This resource guide covers the psychosocial and health concerns of adolescents with chronic illnesses. In a section titled "Bibliographic Information," the guide describes 12 books on general medical and social aspects, three resources on demographics, four resources on school issues, and 14 resources on psychosocial and family issues. A section…

Financing Options for Home Care for Children with Chronic Illness and Severe Disability. Technical Assistance Manual.

ERIC Educational Resources Information Center

Ellison, Marsha Langer; And Others

This manual is intended to accompany technical assistance efforts aimed at improving selected states' home health care programs for children with chronic illness and severe disability. Summary descriptions of funding sources are presented, including purpose, eligibility guidelines, and services covered, as well as additional information as…

Expanding Transition to Address the Needs of Students with Invisible Chronic Illness

ERIC Educational Resources Information Center

Repetto, Jeanne B.; Horky, Susan Chauncey; Miney, Angela; Reiss, John; Saidi, Arwa; Wolcott, Lisa; Saldana, Pablo; Jaress, Jennifer M.

2012-01-01

Many children with invisible chronic illnesses (ICIs) are living to adulthood, necessitating that they prepare for their future. Health care and education systems have different meanings and processes for transition, although both systems are designed to help young adults prepare for independence. As health care and educational services support…

School Psychologists' Role Concerning Children with Chronic Illnesses in Schools

ERIC Educational Resources Information Center

Barraclough, Camille; Machek, Greg

2010-01-01

The authors examined the role of school psychologists in working with children with chronic illnesses in the schools. A total of 300 practicing school psychologists in public schools, drawn from the National Association of School Psychologists membership directory, completed a standard mail survey. The survey solicited information on (a) graduate…

Protective Connections and Educational Attainment among Young Adults with Childhood-Onset Chronic Illness

ERIC Educational Resources Information Center

Maslow, Gary; Haydon, Abigail A.; McRee, Annie-Laurie; Halpern, Carolyn T.

2012-01-01

Background: Youth with childhood-onset chronic illness (COCI) are at risk of poor educational attainment. Specific protective factors that promote college graduation in this population have not been studied previously. In this study, we examine the role protective factors during adolescence play in promoting college graduation among young adults…

Issues in Nutrition for Adolescents with Chronic Illnesses and Disabilities. CYDLINE Reviews.

ERIC Educational Resources Information Center

Minnesota Univ., Minneapolis. National Center for Youth with Disabilities.

This annotated bibliography lists print materials, training and educational materials, and programs concerned with nutrition for youth with chronic illnesses and disabilities. Basic bibliographic information and a brief abstract are provided for each of the 87 bibliographic citations which date from 1980 through 1991. Citations are organized into…

Supporting the Learning of Children with Chronic Illness

ERIC Educational Resources Information Center

A'Bear, David

2014-01-01

This qualitative study explores the challenges that chronically ill students face in their learning as a result of prolonged and intermittent absences from school. It shows how the use of iPod technology as a communicative link minimized the impact of absences and allowed the student to experience true inclusion in their classroom, enabling the…

Race and Ethnicity: Issues for Adolescents with Chronic Illnesses and Disabilities. Cydline Reviews.

ERIC Educational Resources Information Center

Minnesota Univ., Minneapolis. National Center for Youth with Disabilities.

This abstract bibliography lists selected resources for addressing race and ethnicity issues with adolescents who have chronic illnesses and disabilities. References are dated from 1980 to 1991. First, 18 references provide general information about the issues of cultural competence and cultural diversity for health care professionals, educators,…

Developing Social Skills: Issues for Adolescents with Chronic Illnesses and Disabilities. CYDLINE Reviews.

ERIC Educational Resources Information Center

Minnesota Univ., Minneapolis. National Center for Youth with Disabilities.

This collection of annotated bibliographies focuses on the social skills of adolescents, and is drawn from a national database of current programs and literature regarding adolescents with chronic illnesses and other disabilities. Bibliographic materials listed include documents and articles selected from the database of the National Center for…

Self-Esteem: Issues for Adolescents with Chronic Illnesses and Disabilities. CYDLINE Reviews.

ERIC Educational Resources Information Center

Minnesota Univ., Minneapolis. National Center for Youth with Disabilities.

This annotated bibliography focuses on issues of self-esteem in adolescents with disabilities, which is seen as closely related to development of critical social skills. References have been drawn from the National Center for Youth with Disabilities' National Resource Library, a database about youth with chronic illnesses and disabilities. The…

Rehabilitation Counselor Preparation to Work with LGBTQ Persons Living with Chronic Illness/Disability: A Qualitative Content Analysis

ERIC Educational Resources Information Center

Dispenza, Franco; Elston, Nikki C.; Huffstead, Mary E.; Suttles, Mackenzie G.; Golubovic, Nedeljko

2017-01-01

Purpose: To identify meaningful educative experiences that contributed to the development of rehabilitation counselors' abilities to provide effective rehabilitation counseling services to lesbian, gay, bisexual, transgender, and queer (LGBTQ) persons living with chronic illness/disabilities (CID). Method: This was a secondary analysis of a larger…

Legal Issues for Adolescents with Chronic Illnesses and Disabilities and Their Families. CYDLINE Reviews.

ERIC Educational Resources Information Center

Minnesota Univ., Minneapolis. National Center for Youth with Disabilities.

This collection of annotated bibliographies focuses on a broad spectrum of legal issues, and is drawn from a national database of current programs and literature regarding adolescents with chronic illnesses and other disabilities. Bibliographic materials listed include documents and articles concerning the following: consent and confidentiality…

Physical health indicators in major mental illness: data from the Quality and Outcome Framework in the UK.

PubMed

Martin, Julie Langan; Lowrie, Richard; McConnachie, Alex; McLean, Gary; Mair, Frances; Mercer, Stewart; Smith, Daniel

2015-02-26

In the UK, the Quality and Outcome Framework (QOF) has specific targets for general practictioners to record body-mass index (BMI) and blood pressure (BP) in major mental illness, diabetes, and chronic kidney disease. Although incentives are given for aspects of major mental illness (schizophrenia, bipolar disorder, and related psychoses), barriers to care can occur. Our aim was to compare recording of specific targets for BP and BMI in individuals with major mental illness relative to diabetes and chronic kidney disease across the UK. Using 2012 and 2013 QOF data from 9731 general practices across all four countries in the UK, we calculated median payment, population achievement, and exception rates for BP indicators in major mental illness and chronic kidney disease and BMI indicators in major mental illness and diabetes. Differences in unweighted rates between practices in the same UK country were tested with a sign test. Differences in population achievement rate between practices in different countries were compared with those in England by use of a quantile regression analysis. UK payment and population achievement rates for BMI recording in major mental illness were significantly lower than were those in diabetes (payment 92·7% vs 95·5% and population achievement 84·0% vs 92·5%, p<0·0001) and exception rates were higher (8·1% vs 2·0%, p<0·0001). For BP recording, UK payment and population achievement rates were significantly lower for major mental illness than for chronic kidney disease (94·1% vs 97·8% and 87·0% vs 97·1%, p<0·0001), whereas exception rate was higher (6·5% vs 0·0%, p<0·0001). This difference was observed for all UK countries. Median population achievement rates for BMI and BP recording in major mental illness were significantly lower in Scotland than in England (for BMI -1·5%, 99% CI -2·7 to -0·3, and for BP -1·8%, -2·7 to -0·9; p<0·0001 for both). There were no cross-jurisdiction differences for chronic kidney disease and diabetes. We found lower payment rates, higher exception rates, and lower population achievement rates for BMI and BP recording in major mental illness than in diabetes and chronic kidney disease throughout the UK. We also found variation in these rates between countries. This finding is probably multifactorial, reflecting a combination of patient, clinician, and wider organisational factors; however, it might also suggest inequality in access to certain aspects of health care for people with major mental illness. None. Copyright © 2015 Elsevier Ltd. All rights reserved.

Family functioning in families of first-episode psychosis patients as compared to chronic mentally ill patients and healthy controls.

PubMed

Koutra, Katerina; Triliva, Sofia; Roumeliotaki, Theano; Stefanakis, Zacharias; Basta, Maria; Lionis, Christos; Vgontzas, Alexandros N

2014-11-30

The present study aimed to investigate possible differences in family environment among patients experiencing their First Episode of Psychosis (FEP), chronic patients and controls. Family cohesion and flexibility (FACES-IV) and psychological distress (GHQ-28) were evaluated in families of 50 FEP and 50 chronic patients, as well as 50 controls, whereas expressed emotion (FQ) and family burden (FBS) were assessed in families of FEP and chronic patients. Multivariable linear regression analysis, adjusted for confounders, indicated impaired cohesion and flexibility for families of FEP patients compared to controls, and lower scores for families of chronic patients compared to those of FEP patients. Caregivers of chronic patients scored significantly higher in criticism, and reported higher burden and psychological distress than those of FEP patients. Our findings suggest that unbalanced levels of cohesion and flexibility, high criticism and burden appeared to be the outcome of psychosis and not risk factors triggering the onset of the illness. Furthermore, emotional over-involvement both in terms of positive (i.e. concern) and negative behaviors (i.e. overprotection) is prevalent in Greek families. Psychoeducational interventions from the early stages of the illness should be considered to promote caregivers' awareness regarding the patients' illness, which in turn, may ameliorate dysfunctional family interactions. Copyright © 2014 Elsevier Ireland Ltd. All rights reserved.

Current and Potential Support for Chronic Disease Management in the United States: The Perspective of Family and Friends of Chronically Ill Adults

PubMed Central

Rosland, Ann-Marie; Heisler, Michele; Janevic, Mary; Connell, Cathleen; Langa, Kenneth M.; Kerr, Eve A.; Piette, John D.

2013-01-01

Objectives Family members and friends can be an important source of self-management support for older adults with chronic diseases. We characterized the U.S. population of potential and current “disease management supporters” for people with chronic illness who are ADL-independent, the help that supporters could provide, and barriers to increasing support. Methods Nationally-representative survey of U.S. adults (N=1,722). Results 44% of respondents (representing 100 million US adults) help a family member or friend with chronic disease management; another 9% (representing 21 million US adults) are willing to start. Most are willing to assist with key tasks such as medication use and communicating with providers, although they feel constrained by privacy concerns and a lack of patient health information. Discussion The majority of U.S. adults already help or would be willing to help one of their family members or friends with chronic illness care. Supporters' specific concerns could be addressed through innovative programs. PMID:23795624

Factors affecting vocational outcomes of people with chronic illness participating in a supported competitive open employment program in Hong Kong.

PubMed

Lee, Rosalia K Y; Chan, Chetwyn C H

2005-01-01

This study aimed to analyze the ability of the Patient Retraining and Vocational Resettlement (PRAVR) program to enhance the vocational outcomes of individuals with chronic illness, and to study the socio-demographic factors associated with successful vocational outcome. A retrospective study of 548 individuals with various types of chronic illness who enrolled in the program between 1995 and 2003. Their socio-demographic data and their employment outcome after a six-month job skills retraining and job settlement service were collected for analysis. The program was found to enhance the vocational outcomes of patients who completed the program. Logistic regression identified significant factors predicting successful vocational outcomes. For the male patients, the chances of employment were higher if the onset of illness had occurred at least 10 years before (odd ratios = 0.326). For the female patients, the chances of employment were higher if they had been unemployed for less than 1 year (odd ratio = 3.8). The PRAVR program is able to enhance the vocational outcomes of people with chronic illness in Hong Kong. The factors which were found to relate to successful employment were unique to the local situation. Further studies should explore these factors in a more in-depth manner.

Best candidates for cognitive treatment of illness perceptions in chronic low back pain: results of a theory-driven predictor study.

PubMed

Siemonsma, Petra C; Stuvie, Ilse; Roorda, Leo D; Vollebregt, Joke A; Lankhorst, Gustaaf J; Lettinga, Ant T

2011-04-01

The aim of this study was to identify treatment-specific predictors of the effectiveness of a method of evidence-based treatment: cognitive treatment of illness perceptions. This study focuses on what treatment works for whom, whereas most prognostic studies focusing on chronic non-specific low back pain rehabilitation aim to reduce the heterogeneity of the population of patients who are suitable for rehabilitation treatment in general. Three treatment-specific predictors were studied in patients with chronic non-specific low back pain receiving cognitive treatment of illness perceptions: a rational approach to problem-solving, discussion skills and verbal skills. Hierarchical linear regression analysis was used to assess their predictive value. Short-term changes in physical activity, measured with the Patient-Specific Functioning List, were the outcome measure for cognitive treatment of illness perceptions effect. A total of 156 patients with chronic non-specific low back pain participated in the study. Rational problem-solving was found to be a significant predictor for the change in physical activity. Discussion skills and verbal skills were non-significant. Rational problem-solving explained 3.9% of the total variance. The rational problem-solving scale results are encouraging, because chronic non-specific low back pain problems are complex by nature and can be influenced by a variety of factors. A minimum score of 44 points on the rational problem-solving scale may assist clinicians in selecting the most appropriate candidates for cognitive treatment of illness perceptions.

Understanding depression associated with chronic physical illness: a Q-methodology study in primary care

PubMed Central

Alderson, Sarah L; Foy, Robbie; House, Allan

2015-01-01

Background Detection of depression can be difficult in primary care, particularly when associated with chronic illness. Patient beliefs may affect detection and subsequent engagement with management. Q-methodology can help to identify viewpoints that are likely to influence either clinical practice or policy intervention. Aim To identify socially shared viewpoints of comorbid depression, and characterise key overlaps and discrepancies. Design and setting A Q-methodology study of patients registered with general practices or community clinics in Leeds, UK. Method Patients with coronary heart disease or diabetes and depression from three practices and community clinics were invited to participate. Participants ranked 57 statements about comorbid depression. Factor analyses were undertaken to identify independent accounts, and additional interview data were used to support interpretation. Results Thirty-one patients participated; 13 (42%) had current symptoms of depression. Five accounts towards comorbid depression were identified: overwhelmed resources; something medical or within me; a shameful weakness; part of who I am; and recovery-orientated. The main differences in attitudes related to the cause of depression and its relationship with the patient’s chronic illness, experience of shame, and whether medical interventions would help recovery. Conclusion There are groups of patients who do not perceive a relationship between their depression and chronic illness; they may not understand the intention behind policy initiatives to identify depression during chronic illness reviews. Tailoring detection strategies for depression to take account of different clusters of attitudes and beliefs could help improve identification and personalise management. PMID:26009535

Issues concerning the on-going care of patients with comorbidities in acute care and post-discharge in Australia: a literature review.

PubMed

Williams, Allison; Botti, Mari

2002-10-01

Advances in medical science and improved lifestyles have reduced mortality rates in Australia and most western countries. This has resulted in an ageing population with a concomitant growth in the number of people who are living with chronic illnesses. Indeed a significant number of younger people experience more than one chronic illness. Large numbers of these may require repeated admissions to hospital for acute or episodic care that is superimposed upon the needs of their chronic conditions. To explore the issues that circumscribe the complexities of caring for people with concurrent chronic illnesses, or comorbidities, in the acute care setting and postdischarge. A literature review to examine the issues that impact upon the provision of comprehensive care to patients with comorbidities in the acute care setting and postdischarge. Few studies have investigated this subject. From an Australian perspective, it is evident that the structure of the current health care environment has made it difficult to meet the needs of patients with comorbidities in the acute care setting and postdischarge. This is of major concern for nurses attempting to provide comprehensive care to an increasingly prevalent group of chronically ill people. Further research is necessary to explore how episodic care is integrated into the on-going management of patients with comorbidities and how nurse clinicians can better use an episode of acute illness as an opportunity to review their overall management.

Gamifying Self-Management of Chronic Illnesses: A Mixed-Methods Study

PubMed Central

Wills, Gary; Ranchhod, Ashok

2016-01-01

Background Self-management of chronic illnesses is an ongoing issue in health care research. Gamification is a concept that arose in the field of computer science and has been borrowed by many other disciplines. It is perceived by many that gamification can improve the self-management experience of people with chronic illnesses. This paper discusses the validation of a framework (called The Wheel of Sukr) that was introduced to achieve this goal. Objective This research aims to (1) discuss a gamification framework targeting the self-management of chronic illnesses and (2) validate the framework by diabetic patients, medical professionals, and game experts. Methods A mixed-method approach was used to validate the framework. Expert interviews (N=8) were conducted in order to validate the themes of the framework. Additionally, diabetic participants completed a questionnaire (N=42) in order to measure their attitudes toward the themes of the framework. Results The results provide a validation of the framework. This indicates that gamification might improve the self-management of chronic illnesses, such as diabetes. Namely, the eight themes in the Wheel of Sukr (fun, esteem, socializing, self-management, self-representation, motivation, growth, sustainability) were perceived positively by 71% (30/42) of the participants with P value <.001. Conclusions In this research, both the interviews and the questionnaire yielded positive results that validate the framework (The Wheel of Sukr). Generally, this study indicates an overall acceptance of the notion of gamification in the self-management of diabetes. PMID:27612632

[The transition process from paediatric to adult services: A perspective from hospitalised adolescent sufferers of chronic diseases].

PubMed

Inostroza Quezada, Carolina; Correa Venegas, María Loreto; Besoain Arrau, Carolina; Reinoso Medinelli, Alejandro; Velarde Lizama, Macarena; Valenzuela Mujica, María Teresa; Bedregal García, Paula; Zubarew Gurtchin, Tamara

2016-01-01

Chronic illnesses during adolescence are a big challenge for the patient, his or her family, and health care providers. The transition from paediatric health services to adult health services involves a programmed and planned transfer process of adolescent sufferers of chronic illnesses, in order to maintain a high quality of life and bio-psycho-social development. There is currently no transition model. The objective of the study is to understand the transition process from the perspective of hospitalised adolescents to collaborate towards the design of a model that meets the needs studied. Semi-structured interviews with 13 adolescent sufferers of chronic illnesses, hospitalised in two healthcare centres in Santiago, Chile, in one analytical-relational study, supported by qualitative methodology. In the analysis, 5 major themes stand out: experience of living with the illness, the importance of the doctor-patient relationship, the concept of limited autonomy to the pharmacology, the absence of the transition process as such, and the identification of barriers and needs for an adequate transition. This study is new in Chile in that it explores the phenomenom of the transition of adolescents with chronic illnesses. It emphasises the need to reinforce the concept of self-care and autonomy from early stages of care, and the importance of early planning of a healthy transition process, in accordance to the detected needs of the adolescents themselves. Copyright © 2015. Publicado por Elsevier España, S.L.U.

Gamifying Self-Management of Chronic Illnesses: A Mixed-Methods Study.

PubMed

AlMarshedi, Alaa; Wills, Gary; Ranchhod, Ashok

2016-09-09

Self-management of chronic illnesses is an ongoing issue in health care research. Gamification is a concept that arose in the field of computer science and has been borrowed by many other disciplines. It is perceived by many that gamification can improve the self-management experience of people with chronic illnesses. This paper discusses the validation of a framework (called The Wheel of Sukr) that was introduced to achieve this goal. This research aims to (1) discuss a gamification framework targeting the self-management of chronic illnesses and (2) validate the framework by diabetic patients, medical professionals, and game experts. A mixed-method approach was used to validate the framework. Expert interviews (N=8) were conducted in order to validate the themes of the framework. Additionally, diabetic participants completed a questionnaire (N=42) in order to measure their attitudes toward the themes of the framework. The results provide a validation of the framework. This indicates that gamification might improve the self-management of chronic illnesses, such as diabetes. Namely, the eight themes in the Wheel of Sukr (fun, esteem, socializing, self-management, self-representation, motivation, growth, sustainability) were perceived positively by 71% (30/42) of the participants with P value <.001. In this research, both the interviews and the questionnaire yielded positive results that validate the framework (The Wheel of Sukr). Generally, this study indicates an overall acceptance of the notion of gamification in the self-management of diabetes.

School Experiences of Siblings of Children with Chronic Illness: A Systematic Literature Review.

PubMed

Gan, Lucy L; Lum, Alistair; Wakefield, Claire E; Nandakumar, Beeshman; Fardell, Joanna E

Siblings of children with chronic illness have unique experiences that can affect their school functioning, such that they may miss ongoing periods of school, experience difficulties with schoolwork or experience changes in their peer and teacher interactions. This review provides an overview of these siblings' school experiences. Six databases (Medline, PsychINFO, CINAHL, ERIC, Embase and The Cochrane Library) were systematically searched for studies examining the school experiences and peer relationships of siblings of children with chronic illness, as well as school-based interventions for these siblings. Studies were included if they were published in or after 2000 and were published in English. We identified 2137 articles upon initial search. From these, we identified 28 eligible studies examining the school experiences of >1470 siblings of children with chronic illness. Three key themes were identified throughout the reviewed articles. The literature described 1) the psychological impact on siblings at school; 2) decreases in school attendance and academic functioning, and; 3) changes or perceived differences in peer and teacher interactions. Siblings value teacher and peer support, and this support may contribute to better sibling school functioning. Many siblings are socially resilient, yet overlooked, members of the family who may present with psychological, academic and peer related difficulties at school following diagnosis of a brother or sister with chronic illness. Future research is needed to further delineate the sibling school experience to better facilitate the development of targeted sibling support interventions within the school environment. Copyright © 2016 Elsevier Inc. All rights reserved.

Perceived Exercise Self-Efficacy, Benefits and Barriers, and Commitment to a Plan for Exercise among Jordanians with Chronic Illnesses.

PubMed

Darawad, Muhammad W; Khalil, Amani A; Hamdan-Mansour, Ayman M; Nofal, Basema M

2016-11-01

To explore Jordanian chronic illnesses patients' perceived exercise self-efficacy, benefits and barriers, and commitment to exercise planning, and to assess the relationship between those variables. Descriptive cross-sectional design. Data were collected from a convenience sample of 402 outpatient Jordanians with chronic illnesses, using Exercise Self-Efficacy Scale, Exercise Benefits and Barriers Scale, and Commitment to a Plan for Exercise Scale. The average BMI was 28.3, and exercise period 3.2 hours/ week. Participants reported moderate perceived self-efficacy (M= 47.5%, SD= 11.7), commitment to exercise planning (M=2.0/3, SD=0.3), exercise barriers (M=2.4/4, SD=0.3), and benefits (M=2.3/4, SD=0.3). Commitment to exercise planning had a significant correlation with barriers (r=0.11) and benefits (r=0.10). Self-efficacy was not found to correlate with other variables. Even though participants reported higher perceived self-efficacy and commitment to exercise plan than that reported in literature, they were found to be overweight and inactive, which indicates the importance of such study. Exercise education programs are needed taking into considerations patients' individual differences. However, the broad grouping of diseases may not produce a homogenous sample, for which disease categories are recommended in future studies. Patients with chronic illness need more encouragement to engage themselves in exercise practices. Exercise educational program for patients with chronic illnesses should consider patients' reported exercise benefits and barriers. © 2014 Association of Rehabilitation Nurses.

Measurement of Chronic Pain and Opioid Use Evaluation in Community-Based Persons with Serious Illnesses

PubMed Central

Naidu, Ramana K.

2018-01-01

Abstract Background: Chronic pain associated with serious illnesses is having a major impact on population health in the United States. Accountability for high quality care for community-dwelling patients with serious illnesses requires selection of metrics that capture the burden of chronic pain whose treatment may be enhanced or complicated by opioid use. Objective: Our aim was to evaluate options for assessing pain in seriously ill community dwelling adults, to discuss the use/abuse of opioids in individuals with chronic pain, and to suggest pain and opioid use metrics that can be considered for screening and evaluation of patient responses and quality care. Design: Structured literature review. Measurements: Evaluation of pain and opioid use assessment metrics and measures for their potential usefulness in the community. Results: Several pain and opioid assessment instruments are available for consideration. Yet, no one pain instrument has been identified as “the best” to assess pain in seriously ill community-dwelling patients. Screening tools exist that are specific to the assessment of risk in opioid management. Opioid screening can assess risk based on substance use history, general risk taking, and reward-seeking behavior. Conclusions: Accountability for high quality care for community-dwelling patients requires selection of metrics that will capture the burden of chronic pain and beneficial use or misuse of opioids. Future research is warranted to identify, modify, or develop instruments that contain important metrics, demonstrate a balance between sensitivity and specificity, and address patient preferences and quality outcomes. PMID:29091525

Structure, process, and annual ICU mortality across 69 centers: United States Critical Illness and Injury Trials Group Critical Illness Outcomes Study.

PubMed

Checkley, William; Martin, Greg S; Brown, Samuel M; Chang, Steven Y; Dabbagh, Ousama; Fremont, Richard D; Girard, Timothy D; Rice, Todd W; Howell, Michael D; Johnson, Steven B; O'Brien, James; Park, Pauline K; Pastores, Stephen M; Patil, Namrata T; Pietropaoli, Anthony P; Putman, Maryann; Rotello, Leo; Siner, Jonathan; Sajid, Sahul; Murphy, David J; Sevransky, Jonathan E

2014-02-01

Hospital-level variations in structure and process may affect clinical outcomes in ICUs. We sought to characterize the organizational structure, processes of care, use of protocols, and standardized outcomes in a large sample of U.S. ICUs. We surveyed 69 ICUs about organization, size, volume, staffing, processes of care, use of protocols, and annual ICU mortality. ICUs participating in the United States Critical Illness and Injury Trials Group Critical Illness Outcomes Study. Sixty-nine intensivists completed the survey. We characterized structure and process variables across ICUs, investigated relationships between these variables and annual ICU mortality, and adjusted for illness severity using Acute Physiology and Chronic Health Evaluation II. Ninety-four ICU directors were invited to participate in the study and 69 ICUs (73%) were enrolled, of which 25 (36%) were medical, 24 (35%) were surgical, and 20 (29%) were of mixed type, and 64 (93%) were located in teaching hospitals with a median number of five trainees per ICU. Average annual ICU mortality was 10.8%, average Acute Physiology and Chronic Health Evaluation II score was 19.3, 58% were closed units, and 41% had a 24-hour in-house intensivist. In multivariable linear regression adjusted for Acute Physiology and Chronic Health Evaluation II and multiple ICU structure and process factors, annual ICU mortality was lower in surgical ICUs than in medical ICUs (5.6% lower [95% CI, 2.4-8.8%]) or mixed ICUs (4.5% lower [95% CI, 0.4-8.7%]). We also found a lower annual ICU mortality among ICUs that had a daily plan of care review (5.8% lower [95% CI, 1.6-10.0%]) and a lower bed-to-nurse ratio (1.8% lower when the ratio decreased from 2:1 to 1.5:1 [95% CI, 0.25-3.4%]). In contrast, 24-hour intensivist coverage (p = 0.89) and closed ICU status (p = 0.16) were not associated with a lower annual ICU mortality. In a sample of 69 ICUs, a daily plan of care review and a lower bed-to-nurse ratio were both associated with a lower annual ICU mortality. In contrast to 24-hour intensivist staffing, improvement in team communication is a low-cost, process-targeted intervention strategy that may improve clinical outcomes in ICU patients.

Development and Validation of a Printed Information Brochure for Families of Chronically Critically Ill Patients

PubMed Central

Carson, Shannon S.; Vu, Maihan; Danis, Marion; Camhi, Sharon L.; Scheunemann, Leslie P.; Cox, Christopher E.; Hanson, Laura C.; Nelson, Judith E.

2012-01-01

Objective Families and other surrogate decision-makers for chronically critically ill patients often lack information about patient prognosis or options for care. This study describes an approach to develop and validate a printed information brochure about chronic critical illness aimed at improving comprehension of the disease process and outcomes for patients’ families and other surrogate decision-makers. Design Investigators reviewed existing literature to identify key domains of informational needs. Content of these domains was incorporated in a draft brochure that included graphics and a glossary of terms. Clinical sensibility, balance, and emotional sensitivity of the draft brochure were tested in a series of evaluations by cohorts of experienced clinicians (n=49) and clinical content experts (n=8), with revisions after each review. Cognitive testing of the brochure was performed through interviews of 10 representative family members of chronically critically ill patients with quantitative and qualitative analysis of responses. Measurements and Main Results Clinical sensibility and balance were rated in the two most favorable categories on a 5-point scale by more than two thirds of clinicians and content experts. After review, family members described the brochure as clear and readable and recommended that the brochure be delivered to family members by clinicians, followed by a discussion of its contents. They indicated that the glossary was useful and recommended supplementation by additional lists of local resources. After reading the brochure, their prognostic estimates became more consistent with actual outcomes. Conclusions We have developed and validated a printed information brochure that may improve family comprehension of chronic critical illness and its outcomes. The structured process that is described can serve as a template for the development of other information aids for use with seriously ill populations. PMID:21926610

Interventions to evaluate fitness to drive among people with chronic conditions: Systematic review of literature.

PubMed

Marino, Marta; de Belvis, Antonio; Basso, Danila; Avolio, Maria; Pelone, Ferruccio; Tanzariello, Maria; Ricciardi, Walter

2013-01-01

When an health condition has been identified, the question of whether to continue driving depends not on a medical diagnosis, but on the functional consequences of the illness. The complex nature of physical and mental impairments and their relationship with safe driving make the availability of evidence based tools necessary for health professionals. The review aims at identifying and summarizing scientific findings concerning the relationship between neuropsychological and clinical screening tests and fitness to drive among people with chronic conditions. Studies were searched for driving ability evaluation by road test or simulator, clinical/neuropsychological examinations of participants with chronic diseases or permanent disablement impairing driving performance, primary outcomes as fatal/non-fatal traffic injuries and secondary outcomes as fitness to drive assessment. Twenty-seven studies fulfilled the inclusion criteria. Some studies included more than one clinical condition. The illness investigated were Alzheimer Disease (n=6), Parkinson Disease (n=8), Cardiovascular Accident (n=4), Traumatic Brain Injuries (n=3), Sleep Apnea Syndrome (n=2), Narcolepsy (n=1), Multiple Sclerosis (n=1) and Hepatic Encephalopathy (n=1), comorbidities (n=3). No studies match inclusion criteria about Myasthenia Gravis, Diabetes Mellitus, Renal Diseases, Hearing Disorders and Sight Diseases. No studies referred to primary outcomes. The selected studies provided opposite evidences. It would be reasonable to argue that some clinical and neuropsychological tests are effective in predicting fitness to drive even if contrasting results support that driving performance decreases as a function of clinical and neuropsychological decline in some chronic diseases. Nevertheless we found no evidence that clinical and neuropsychological screening tests would lead to a reduction in motor vehicle crashes involving chronic disabled drivers. It seems necessary to develop tests with proven validity for identifying high-risk drivers so that physicians can provide guidance to their patients in chronic conditions, and also to medical advisory boards working with licensing offices. Copyright © 2012 Elsevier Ltd. All rights reserved.

Laboratory and clinical data on wound healing by low-power laser from the Medical Institute of Vilafortuny, Spain

NASA Astrophysics Data System (ADS)

Trelles, Mario A.; Mayayo, E.; Resa, A. M.; Rigau, Josepa; Calvo, G.

1991-05-01

Low power laser has been claimed, both at laboratory and for clinical treatment to activate wound healing. Chronic ulcers respond very positively to laser treatment when particular rules of irradiation are take into account. The multiple etiology of chronic ulcers is not conductive to treatment selection, including laser treatment, if the associated illness is not taken into consideration. For more than 14 years our clinical experience have been significantly positive using lasers in the treatment of chronic ulcers. Our causistic, based on 242 cases treated from 1975 through 1983, has kept in many cases very close follow-up for an extended time periods of up to six years after healing. By controlling photographically and microscopically a chronic venous ulcer submitted to low density laser irradiation, as well as by studying the process of reparation of experimental ulcers and burns, produce on laboratory animal, the healing effects of laser radiation can be followed. Statistically, it is possible to estimate that low intensity laser irradiation produces faster reparation of damage tissue.

Well sibling psychological adjustment to chronic physical disorder in a sibling: how important is maternal awareness of their illness attitudes and perceptions?

PubMed

Taylor; Fuggle, P; Charman, T

2001-10-01

The psychological adjustment of healthy siblings was investigated in relation to their attitudes and perceptions about their brother's or sister's chronic physical disorder, to their mothers' awareness of these attitudes and perceptions, and to three other maternal factors (maternal distress, maternal social support, and amount of care demanded by the physical disorder). Sixty-two well siblings and mothers of children with a range of chronic physical disorders completed standardised questionnaires. The majority of siblings did not appear to have adjustment problems, although the sample had slightly increased rates of emotional symptoms compared to the general population. Mothers rated well siblings as having more negative attitudes and perceptions about the physical disorder than reported by siblings themselves. A multiple regression analysis indicated that better sibling adjustment was associated with higher maternal awareness of their attitudes and perceptions. These findings support Varni and Wallander's (1998) model that emphasises the role of relationship and attitude variables in child adjustment to chronic physical disorder. The implications of these findings for clinical practice are discussed.

Implementation and effectiveness of 'care navigation', coordinated management for people with complex chronic illness: rationale and methods of a randomised controlled trial.

PubMed

Plant, Natalie; Mallitt, Kylie-Ann; Kelly, Patrick J; Usherwood, Tim; Gillespie, James; Boyages, Steven; Jan, Stephen; McNab, Justin; Essue, Beverley M; Gradidge, Kathy; Maranan, Nereus; Ralphs, David; Aspin, Clive; Leeder, Stephen

2013-05-03

Chronic illness is a significant driver of the global burden of disease and associated health care costs. People living with severe chronic illness are heavy users of acute hospital services; better coordination of their care could potentially improve health outcomes while reducing hospital use. The Care Navigation trial will evaluate an in-hospital coordinated care intervention on health service use and quality of life in chronically ill patients. A randomised controlled trial in 500 chronically ill patients presenting to the emergency department of a hospital in Western Sydney, Australia. Participants have three or more hospital admissions within a previous 12 month period and either aged ≥70 years; or aged ≥45 years and of Aboriginal or Torres Strait Islander descent; or aged ≥ 16 with a diagnosis of a respiratory or cardiology related illness. Patients are randomised to either the coordinated care program (Care Navigation), or to usual care. The Care Navigation program consists of dedicated nurses who conduct patient risk assessments, oversee patient nursing while in hospital, and guide development of a care plan for the management of chronic illness after being discharged from hospital. These nurses also book community appointments and liaise with general practitioners. The main outcome variables are the number of emergency department re-presentations and hospital readmissions, and quality of life during a 24 month follow-up. Secondary outcomes are length of hospital stay, mortality, time to first hospital re-admission, time to first emergency department re-presentation, patient satisfaction, adherence to prescribed medications, amount and type of in-hospital referrals made for consultations and diagnostic testing, and the number and type of community health referrals. A process evaluation and economic analysis will be conducted alongside the randomised trial. A trial of in-hospital care coordination may support recent evidence that engaging primary health services in care plans linked to multidisciplinary team support improves patient outcomes and reduces costs to the health system. This will inform local, national and international health policy. Australia New Zealand Clinical Trials Registry ACTRN12609000554268.

Deciding in the dark: advance directives and continuation of treatment in chronic critical illness.

PubMed

Camhi, Sharon L; Mercado, Alice F; Morrison, R Sean; Du, Qingling; Platt, David M; August, Gary I; Nelson, Judith E

2009-03-01

Chronic critical illness is a devastating syndrome for which treatment offers limited clinical benefit but imposes heavy burdens on patients, families, clinicians, and the health care system. We studied the availability of advance directives and appropriate surrogates to guide decisions about life-sustaining treatment for the chronically critically ill and the extent and timing of treatment limitation. Prospective cohort study. Respiratory Care Unit (RCU) in a large, tertiary, urban, university-affiliated, hospital. Two hundred three chronically critically ill adults transferred to RCU after tracheotomy for failure to wean from mechanical ventilation in the intensive care unit. None. We interviewed RCU caregivers and reviewed patient records to identify proxy appointments, living wills, or oral statements of treatment preferences, resuscitation directives, and withholding/withdrawal of mechanical ventilation, nutrition, hydration, renal replacement and vasopressors. Forty-three of 203 patients (21.2%) appointed a proxy and 33 (16.2%) expressed preferences in advance directives. Do not resuscitate directives were given for 71 patients (35.0%). Treatment was limited for 39 patients (19.2%). Variables significantly associated with treatment limitation were proxy appointment prior to study entry (time of tracheotomy/RCU transfer) (odds ratio = 6.7, 95% confidence interval [CI], 2.3-20.0, p = 0.0006) and palliative care consultation in the RCU (OR = 40.9, 95% CI, 13.1-127.4, p < 0.0001). Median (interquartile range) time to first treatment limitation was 39 (31.0-45.0) days after hospital admission and 13 (8.0-29.0) days after RCU admission. For patients dying after treatment limitation, median time from first limitation to death ranged from 3 days for mechanical ventilation and hydration to 7 days for renal replacement. Most chronically critically ill patients fail to designate a surrogate decision-maker or express preferences regarding life-sustaining treatments. Despite burdensome symptoms and poor outcomes, limitation of such treatments was rare and occurred late, when patients were near death. Opportunities exist to improve communication and decision-making in chronic critical illness.

Understanding Mental Illness Stigma Toward Persons With Multiple Stigmatized Conditions: Implications of Intersectionality Theory.

PubMed

Oexle, Nathalie; Corrigan, Patrick W

2018-05-01

People with mental illness are often members of multiple stigmatized social groups. Therefore, experienced disadvantage might not be determined solely by mental illness stigma. Nevertheless, most available research does not consider the effects and implications of membership in multiple stigmatized social groups among people with mental illness. Reflecting on intersectionality theory, the authors discuss two intersectional effects determining disadvantage among people with mental illness who are members of multiple stigmatized social groups, namely double disadvantage and prominence. To be effective, interventions to reduce disadvantage experienced by people with mental illness need to be flexible and targeted rather than universal in order to address the implications of intersectionality. Whereas education-based approaches usually assume homogeneity and use universal strategies, contact-based interventions consider diversity among people with mental illness.

Molecular Pharmacology of δ-Opioid Receptors

PubMed Central

Gendron, Louis; Cahill, Catherine M.; von Zastrow, Mark; Schiller, Peter W.

2016-01-01

Opioids are among the most effective analgesics available and are the first choice in the treatment of acute severe pain. However, partial efficacy, a tendency to produce tolerance, and a host of ill-tolerated side effects make clinically available opioids less effective in the management of chronic pain syndromes. Given that most therapeutic opioids produce their actions via µ-opioid receptors (MOPrs), other targets are constantly being explored, among which δ-opioid receptors (DOPrs) are being increasingly considered as promising alternatives. This review addresses DOPrs from the perspective of cellular and molecular determinants of their pharmacological diversity. Thus, DOPr ligands are examined in terms of structural and functional variety, DOPrs’ capacity to engage a multiplicity of canonical and noncanonical G protein–dependent responses is surveyed, and evidence supporting ligand-specific signaling and regulation is analyzed. Pharmacological DOPr subtypes are examined in light of the ability of DOPr to organize into multimeric arrays and to adopt multiple active conformations as well as differences in ligand kinetics. Current knowledge on DOPr targeting to the membrane is examined as a means of understanding how these receptors are especially active in chronic pain management. Insight into cellular and molecular mechanisms of pharmacological diversity should guide the rational design of more effective, longer-lasting, and better-tolerated opioid analgesics for chronic pain management. PMID:27343248

Social Networks, the ‘Work’ and Work Force of Chronic Illness Self-Management: A Survey Analysis of Personal Communities

PubMed Central

Vassilev, Ivaylo; Rogers, Anne; Blickem, Christian; Brooks, Helen; Kapadia, Dharmi; Kennedy, Anne; Sanders, Caroline; Kirk, Sue; Reeves, David

2013-01-01

Self-management support forms a central aspect of chronic Illness management nationally and globally. Evidence for the success of self-management support has mainly focussed on individually-centred outcomes of behavioural change. While it is recognised that social network members play an important role there is currently a gap in knowledge regarding who provides what type of support and under what circumstances. This is relevant for understanding the division of labour and the meeting of needs for those living with a long-term condition. We therefore took a network approach to explore self-management support conceptualising it as types of illness ‘work’ undertaken within peoples’ social networks. 300 people from deprived areas and with chronic illnesses took part in a survey conducted in 2010 in the North West of England. A concentric circles diagram was used as a research tool with which participants identified 2,544 network members who contributed to illness management. The results provide an articulation of how social network members are substantially involved in illness management. Whilst partners and close family make the highest contributions there is evidence of inputs from a wide range of relationships. Network member characteristics (type of relationship, proximity, frequency of contact) impact on the amount of illness work undertaken in peoples’ networks. In networks with ‘no partner’ other people tend to contribute more in the way of illness related work than in networks with a partner. This indicates a degree of substitutability between differently constituted networks, and that the level and type of input by different members of a network might change according to circumstances. A network perspective offers an opportunity to redress the balance of an exclusively individual focus on self-management because it addresses the broader set of contributions and resources available to people in need of chronic illness management and support. PMID:23565162

Increased access to palliative care and hospice services: opportunities to improve value in health care.

PubMed

Meier, Diane E

2011-09-01

A small proportion of patients with serious illness or multiple chronic conditions account for the majority of health care spending. Despite the high cost, evidence demonstrates that these patients receive health care of inadequate quality, characterized by fragmentation, overuse, medical errors, and poor quality of life. This article examines data demonstrating the impact of the U.S. health care system on clinical care outcomes and costs for the sickest and most vulnerable patients. It also defines palliative care and hospice, synthesizes studies of the outcomes of palliative care and hospice services, reviews variables predicting access to palliative care and hospice services, and identifies those policy priorities necessary to strengthen access to high-quality palliative care. Palliative care and hospice services improve patient-centered outcomes such as pain, depression, and other symptoms; patient and family satisfaction; and the receipt of care in the place that the patient chooses. Some data suggest that, compared with the usual care, palliative care prolongs life. By helping patients get the care they need to avoid unnecessary emergency department and hospital stays and shifting the locus of care to the home or community, palliative care and hospice reduce health care spending for America's sickest and most costly patient populations. Policies focused on enhancing the palliative care workforce, investing in the field's science base, and increasing the availability of services in U.S. hospitals and nursing homes are needed to ensure equitable access to optimal care for seriously ill patients and those with multiple chronic conditions. © 2011 Milbank Memorial Fund. Published by Wiley Periodicals Inc.

Cannabis use in palliative care - an examination of the evidence and the implications for nurses.

PubMed

Green, Anita J; De-Vries, Kay

2010-09-01

Examine the pharmaceutical qualities of cannabis including a historical overview of cannabis use. Discuss the use of cannabis as a clinical intervention for people experiencing palliative care, including those with life-threatening chronic illness such as multiple sclerosis and motor neurone disease [amyotrophic lateral sclerosis] in the UK. The non-medicinal use of cannabis has been well documented in the media. There is a growing scientific literature on the benefits of cannabis in symptom management in cancer care. Service users, nurses and carers need to be aware of the implications for care and treatment if cannabis is being used medicinally. A comprehensive literature review. Literature searches were made of databases from 1996 using the term cannabis and the combination terms of cannabis and palliative care; symptom management; cancer; oncology; chronic illness; motor neurone disease/amyotrophic lateral sclerosis; and multiple sclerosis. Internet material provided for service users searching for information about the medicinal use of cannabis was also examined. The literature on the use of cannabis in health care repeatedly refers to changes for users that may be equated with improvement in quality of life as an outcome of its use. This has led to increased use of cannabis by these service users. However, the cannabis used is usually obtained illegally and can have consequences for those who choose to use it for its therapeutic value and for nurses who are providing care. Questions and dilemmas are raised concerning the role of the nurse when caring and supporting a person making therapeutic use of cannabis. © 2010 Blackwell Publishing Ltd.

Increased Access to Palliative Care and Hospice Services: Opportunities to Improve Value in Health Care

PubMed Central

Meier, Diane E

2011-01-01

Context: A small proportion of patients with serious illness or multiple chronic conditions account for the majority of health care spending. Despite the high cost, evidence demonstrates that these patients receive health care of inadequate quality, characterized by fragmentation, overuse, medical errors, and poor quality of life. Methods: This article examines data demonstrating the impact of the U.S. health care system on clinical care outcomes and costs for the sickest and most vulnerable patients. It also defines palliative care and hospice, synthesizes studies of the outcomes of palliative care and hospice services, reviews variables predicting access to palliative care and hospice services, and identifies those policy priorities necessary to strengthen access to high-quality palliative care. Findings: Palliative care and hospice services improve patient-centered outcomes such as pain, depression, and other symptoms; patient and family satisfaction; and the receipt of care in the place that the patient chooses. Some data suggest that, compared with the usual care, palliative care prolongs life. By helping patients get the care they need to avoid unnecessary emergency department and hospital stays and shifting the locus of care to the home or community, palliative care and hospice reduce health care spending for America's sickest and most costly patient populations. Conclusions: Policies focused on enhancing the palliative care workforce, investing in the field's science base, and increasing the availability of services in U.S. hospitals and nursing homes are needed to ensure equitable access to optimal care for seriously ill patients and those with multiple chronic conditions. PMID:21933272

Stress spillover of health symptoms from healthy spouses to patient spouses in older married couples managing both diabetes and osteoarthritis.

PubMed

Yorgason, Jeremy B; Roper, Susanne O; Sandberg, Jonathan G; Berg, Cynthia A

2012-12-01

Many studies examining illness within marriage have investigated how illness in one spouse influences the other spouse. In later-life marriages, where both spouses are more likely to have health challenges, there is an increased likelihood that health symptoms from both spouses affect each other. In the current study we examined how health symptoms in a "healthy" spouse may exacerbate health problems in a partner (the patient) who is managing multiple chronic illnesses. Surveys were collected across 14 days from 27 later-life couples where patients had both diabetes and osteoarthritis. Results indicated that higher healthy spouse symptoms were generally associated with higher patient symptoms, suggesting a spillover effect. Spouse reports of positive and negative mood were inversely linked with patient health outcomes. Spouse reports of higher positive marital interactions were surprisingly linked with higher patients' arthritis activity and activity limitations, possibly indicating a compensatory effect where marital interactions increase with symptoms. Daily spouse reports of positive marital interactions and mood were linked with patient health outcomes even after the spillover of health symptoms was taken into account.

The Family Challenge of Caring for the Chronically Mentally Ill: A Phenomenological Study.

PubMed

Shamsaei, Farshid; Cheraghi, Fatemeh; Esmaeilli, Ravanbakhsh

2015-09-01

Family caregiving for patients with chronic mental illness is influenced by various factors such as political, socioeconomic, and cultural contexts as well as related policies and health services. The purpose of this study was to explore the challenges with which the family caregivers of patients with chronic mental illness have to contend. The research design was qualitative with a phenomenological approach. The research population consisted of 16 long-term carers expressing interest in participating in the project. The carers were the family members of mentally ill relatives who collected their monthly medications at Farshchian Psychiatry Hospital in Hamadan in 2012. Purposive sampling was used to draw the sample. Data were collected by individual in-depth semi-structured interviews, which were tape-recorded and analyzed via Colaizzi's phenomenological method. Rigor was assessed regarding credibility, dependability, conformability, and transferability. Our findings highlighted 4 main themes, namely stress and emotional distress, need for education and information, socioeconomic effects and support, and physical strain. Families experience frustrations when providing support and care to their mentally ill relatives. They, therefore, need appropriate support and intervention by mental health services.

Proposed model of integrated care to improve health outcomes for individuals with multimorbidities

PubMed Central

Sampalli, Tara; Fox, Roy A; Dickson, Robert; Fox, Jonathan

2012-01-01

Multimorbidity is defined as the coexistence of multiple chronic conditions. Individuals with multimorbidity typically present with complex needs and show significant changes in their functional health and quality of life. Multimorbidity in the aging population is well recognized, but there has been limited research on ways to manage the problem effectively. More recent studies have demonstrated a high prevalence of multimorbidity in the younger demographics aged under 65 years. There is a definite need to develop models of care that can manage these individuals effectively and mitigate the impact of illness on individuals and the financial burden to the health care system. An integrated model of care has been developed and implemented in a facility in Nova Scotia that routinely treats individuals with multiple chronic conditions. This care model is designed to address the specific needs of this complex patient population, with integrated and coordinated care modules that meet the needs of the person versus the disease. The results of a pilot evaluation of this care model are also discussed. PMID:23118532

Sepsis and Critical Illness Research Center investigators: protocols and standard operating procedures for a prospective cohort study of sepsis in critically ill surgical patients

PubMed Central

Loftus, Tyler J; Mira, Juan C; Ozrazgat-Baslanti, Tezcan; Ghita, Gabriella L; Wang, Zhongkai; Stortz, Julie A; Brumback, Babette A; Bihorac, Azra; Segal, Mark S; Anton, Stephen D; Leeuwenburgh, Christiaan; Mohr, Alicia M; Efron, Philip A; Moldawer, Lyle L; Moore, Frederick A; Brakenridge, Scott C

2017-01-01

Introduction Sepsis is a common, costly and morbid cause of critical illness in trauma and surgical patients. Ongoing advances in sepsis resuscitation and critical care support strategies have led to improved in-hospital mortality. However, these patients now survive to enter state of chronic critical illness (CCI), persistent low-grade organ dysfunction and poor long-term outcomes driven by the persistent inflammation, immunosuppression and catabolism syndrome (PICS). The Sepsis and Critical Illness Research Center (SCIRC) was created to provide a platform by which the prevalence and pathogenesis of CCI and PICS may be understood at a mechanistic level across multiple medical disciplines, leading to the development of novel management strategies and targeted therapies. Methods Here, we describe the design, study cohort and standard operating procedures used in the prospective study of human sepsis at a level 1 trauma centre and tertiary care hospital providing care for over 2600 critically ill patients annually. These procedures include implementation of an automated sepsis surveillance initiative, augmentation of clinical decisions with a computerised sepsis protocol, strategies for direct exportation of quality-filtered data from the electronic medical record to a research database and robust long-term follow-up. Ethics and dissemination This study has been registered at ClinicalTrials.gov, approved by the University of Florida Institutional Review Board and is actively enrolling subjects. Dissemination of results is forthcoming. PMID:28765125

Chronic Physical Illness and Mental Health in Children. Results from a Large-Scale Population Study

ERIC Educational Resources Information Center

Hysing, Mari; Elgen, Irene; Gillberg, Christopher; Lie, Stein Atle; Lundervold, Astri J.

2007-01-01

Background: The aim of the present study was to evaluate the sensitivity and specificity of the Strengths and Difficulties Questionnaire (SDQ) in detecting emotional and behavioural problems among children with chronic illness (CI). Methods: Parents and teachers of a population of primary school children in Norway (n = 9430) completed a…

Youth with Disabilities and Chronic Illnesses: An Introductory Guide for Youth and Parents. CYDLINE Reviews.

ERIC Educational Resources Information Center

Minnesota Univ., Minneapolis. National Center for Youth with Disabilities.

This bibliography covers a wide range of issues related to the needs of adolescents and young adults with chronic illnesses and disabilities and their families. For each item in the bibliography, information provided includes author, title, source, date, and abstract. Price information is given when available. Materials include books, audiotapes,…

Adults Living with Limited Literacy and Chronic Illness: Patient Education Experiences

ERIC Educational Resources Information Center

King, Judy; Taylor, Maurice C.

2010-01-01

The purpose of this study was to investigate how Canadian adults living with limited literacy and chronic illness made meaning of their patient education experiences. The study used a hermeneutic phenomenological research design and employed three data sources over a nine-month period. Data was interpreted and analyzed as it was collected,…

Diagnosis of Late Stage, Early Onset, Small Fiber Polyneuropathy

DTIC Science & Technology

2016-10-01

progress. 15. SUBJECT TERMS Neuropathy , Gulf War Illness, chronic widespread pain, chronic multisymptom illness, small- fiber polyneuropathy, case...life or express it in response to environmental triggers encountered by warfighters, such as neurotoxic exposures. 2. KEYWORDS: Neuropathy , Gulf...objective evidence of neuropathy (abnormal skin biopsy or autonomic function test) were analyzed. Preliminary results indicate that SFPN patients

Educational Functioning of Children of Parents with Chronic Physical Illness: A Systematic Review

ERIC Educational Resources Information Center

Chen, Cliff Yung-Chi

2016-01-01

A systematic review of the literature was performed to answer the question: What are the effects of parental chronic physical illness on children's educational functioning? Thirteen studies that met the inclusion criteria for the purpose of this review were identified, indicating the paucity of research on the topic. The results found that…

School Success for Children Experiencing Chronic Illness: National Recommendations for Addressing Global Barriers

ERIC Educational Resources Information Center

Physical Disabilities: Education and Related Services, 2017

2017-01-01

Advances in medicine and medical technologies over the past several decades have extended the lives of many individuals who have chronic illnesses that were once considered terminal. Likewise, these advances have enabled more students to participate in school than ever before. As such, their short-term and long-term academic outcomes must be…

Respite Care. Briefing Paper. Interim Update.

ERIC Educational Resources Information Center

Ambler, Lana; Kupper, Lisa, Ed.

The challenges that families face in caring for a child with a disability or a chronic illness are reviewed in this report on respite care. A parent's narrative describes the difficulties in providing around-the-clock care to a child with a chronic illness. The benefits of respite care are outlined as follows: gives the family peace of mind,…

Reducing Medical Students' Stigmatization of People with Chronic Mental Illness: A Field Intervention at the "Living Museum" State Hospital Art Studio

ERIC Educational Resources Information Center

Cutler, Janis L.; Harding, Kelli J.; Hutner, Lucy A.; Cortland, Clarissa; Graham, Mark J.

2012-01-01

Objective: The authors designed an intervention to reduce beginning medical students' stigmatization of people with chronic mental illness (CMI). Methods: Pre-clinical medical students visited a state psychiatric facility's "Living Museum," a combination patient art studio/display space, as the intervention. During the visit, students interacted…

Solving Developmental Tasks in Adolescents with a Chronic Physical Illness or Physical/Sensory Disability: A Meta-Analysis

ERIC Educational Resources Information Center

Pinquart, Martin; Pfeiffer, Jens P.

2015-01-01

Chronic illnesses and disabilities may impair the attainment of age-typical developmental tasks, such as forming relationships with peers and gaining autonomy. Based on a systematic search in electronic databases and cross-referencing, 447 quantitative empirical studies were included which compared the attainment of developmental tasks of…

Family Supports for Children with Severe Disabilities and Chronic Illnesses in Maryland.

ERIC Educational Resources Information Center

Walker, Pam

This report focuses on positive practices in providing support services to families of children with severe disabilities and chronic illnesses, based on visits to three sites in Maryland: the Family Support Program at the Kennedy Institute in Baltimore, the Coordinating Center for Home and Community Care, and Sick Kids Need Involved People (SKIP).…

Suicide Risk in Adolescents with Chronic Illness: Implications for Primary Care and Specialty Pediatric Practice--A Review

ERIC Educational Resources Information Center

Greydanus, Donald; Patel, Dilip; Pratt, Helen

2010-01-01

Suicide in adolescents is a global tragedy. Research-identified correlates of suicide in youth include depression, academic failure, loss of friends, social isolation, and substance abuse, among others. This review focuses on the potential link between chronic illness in adolescents and increased suicide risk. Research suggests that chronic…

A Brief Cognitive Behavioural Therapy Psychoeducational Group for Chinese People with Chronic Illnesses: An Evaluation Study

ERIC Educational Resources Information Center

Wong, Daniel F. K.; Ip, Priscilla S. Y.; Lee, Kim Man

2017-01-01

This pilot study attempted to examine the effectiveness of a brief cognitive behavioural therapy (CBT) psychoeducational group for Chinese people with chronic illness in Hong Kong. It adopted a single group design, and 52 participants joined the group. A questionnaire with three outcome measures, measuring general mental health, quality of life…

Rural women, technology, and self-management of chronic illness.

PubMed

Weinert, Clarann; Cudney, Shirley; Hill, Wade G

2008-09-01

The objective of this study was to determine the differences in the psychosocial status of 3 groups of chronically ill rural women participating in a computer intervention. The 3 groups were: intense intervention, less-intense intervention, and control. At baseline and following the intervention, measures were taken for social support, self-esteem, empowerment, self-efficacy, depression, stress, and loneliness. ANCOVA results showed group differences for social support and self-efficacy among the overall group. The findings differed for a vulnerable subgroup, with significant between-group differences for social support and loneliness. It was concluded that a computer-delivered intervention can improve social support and self-efficacy and reduce loneliness in rural women, enhancing their ability to self-manage and adapt to chronic illness.

Development of disaster pamphlets based on health needs of patients with chronic illnesses.

PubMed

Motoki, Emi; Mori, Kikuko; Kaji, Hidesuke; Nonami, Yoko; Fukano, Chika; Kayano, Tomonori; Kawada, Terue; Kimura, Yukari; Yasui, Kumiko; Ueki, Hiroko; Ugai, Kazuhiro

2010-01-01

The aim of this research was to develop a pamphlet that would enable patients with diabetes, rheumatic diseases, chronic respiratory disease, and dialysis treatment to be aware of changes in their physical conditions at an early stage of a disaster, cope with these changes, maintain self-care measures, and recover their health. Illness-specific pamphlets were produced based on disaster-related literature, news articles, surveys of victims of the Great Hanshin-Awaji Earthquake Disaster and Typhoon Tokage, and other sources. Each pamphlet consisted of seven sections-each section includes items common to all illnesses as well as items specific to each illness. The first section, "Physical Self-Care", contains a checklist of 18 common physical symptoms as well as symptoms specific to each illness, and goes on to explain what the symptoms may indicate and what should be done about them. The main aim of the "Changes in Mental Health Conditions" section is to detect posttraumatic stress disorder (PTSD) at an early stage. The section "Preventing the Deterioration of Chronic Illnesses" is designed to prevent the worsening of each illness through the provision of information on cold prevention, adjustment to the living environment, and ways of coping with stress. In the sections, "Medication Control" and "Importance of Having Medical Examinations", spaces are provided to list medications currently being used and details of the hospital address, in order to ensure the continued use of medications. The section, "Preparing for Evacuations" gives a list of everyday items and medical items needed to be prepared for a disaster. Finally, the "Methods of Contact in an Emergency" section provides details of how to use the voicemail service. The following content-specific to each illness also was explained in detail: (1) for diabetes, complications arising from the deterioration of the illness, attention to nutrition, and insulin management; (2) for rheumatic diseases, a checklist of factors indicating the worsening of the illness and methods of coping with stress; (3) for chronic respiratory disease, prevention of respiratory infections and management of supplemental oxygen; and (4) for patients requiring dialysis, conditions of dialysis (such as dry weight, dialyzer, number of dialysis treatments, and dialysis hours) and what to do if a disaster occurs during dialysis. It is expected that these pamphlets will be useful to patients with chronic illnesses, and will be used to prepare for disasters, thereby helping the patients cope with the unusual situation that during a disaster and recover as soon as possible.

The meaning of women's experiences of living with multiple sclerosis.

PubMed

Olsson, Malin; Lexell, Jan; Söderberg, Siv

2008-04-01

We conducted a qualitative inquiry in order to describe the meaning of women's experiences of living with multiple sclerosis (MS). Multiple sclerosis is a chronic autoimmune disease of the central nervous system. The majority of persons living with MS are women. Living with MS has been described as difficult because of the uncertainty of the illness. Ten women with MS were interviewed and the interviews were analyzed with a phenomenological hermeneutic interpretation. In this study, we suggest that the meaning of living with MS for women can be understood as trying to maintain power and living with an unrecognizable body. The bodies of women with MS serve as hindrances in everyday life. Bodily changes evident to others impose feelings of being met in a different way, which can be understood as an expression of a violated dignity. At the same time, the women with MS struggle to protect their dignity.

Gulf War illnesses are autoimmune illnesses caused by reactive oxygen species which were caused by nerve agent prophylaxis.

PubMed

Moss, J I

2012-08-01

Gulf War illnesses (GWI share many of the features of chronic fatigue syndrome (CFS) and both CFS and GWI may be the result of chronic immune system processes. The main suspected cause for GWI, the drug pyridostigmine bromide (PB), has been shown to cause neuronal damage from reactive oxygen species (ROS). ROS have been associated with IgM mediated autoimmune responses against ROS induced neoepitopes in depressed patients and this may also apply to CFS. It therefore follows that the drug used in the Gulf War caused ROS, the ROS modified native molecules, and that this trigged the autoimmune condition we refer to as Gulf War illnesses. Similar mechanisms may apply to other autoimmune illnesses. Copyright © 2012 Elsevier Ltd. All rights reserved.

[Mental health of children, adolescents and young adults--part 1: prevalence, illness persistence, adversities, service use, treatment delay and consequences].

PubMed

Lambert, M; Bock, T; Naber, D; Löwe, B; Schulte-Markwort, M; Schäfer, I; Gumz, A; Degkwitz, P; Schulte, B; König, H H; Konnopka, A; Bauer, M; Bechdolf, A; Correll, C; Juckel, G; Klosterkötter, J; Leopold, K; Pfennig, A; Karow, A

2013-11-01

Numerous birth-control studies, epidemiological studies, and observational studies have investigated mental health and health care in childhood, adolescence and early adulthood, including prevalence, age at onset, adversities, illness persistence, service use, treatment delay and course of illness. Moreover, the impact of the burden of illness, of deficits of present health care systems, and the efficacy and effectiveness of early intervention services on mental health were evaluated. According to these data, most mental disorders start during childhood, adolescence and early adulthood. Many children, adolescents and young adults are exposed to single or multiple adversities, which increase the risk for (early) manifestations of mental diseases as well as for their chronicity. Early-onset mental disorders often persist into adulthood. Service use by children, adolescents and young adults is low, even lower than for adult patients. Moreover, there is often a long delay between onset of illness and first adequate treatment with a variety of linked consequences for a poorer psychosocial prognosis. This leads to a large burden of illness with respect to disability and costs. As a consequence several countries have implemented so-called "early intervention services" at the interface of child and adolescent and adult psychiatry. Emerging studies show that these health-care structures are effective and efficient. Part 1 of the present review summarises the current state of mental health in childhood, adolescence and early adulthood, including prevalence, age at onset, adversities, illness persistence, service use, and treatment delay with consequences. © Georg Thieme Verlag KG Stuttgart · New York.

[Mental health of children, adolescents and young adults--part 2: burden of illness, deficits of the German health care system and efficacy and effectiveness of early intervention services].

PubMed

Karow, A; Bock, T; Naber, D; Löwe, B; Schulte-Markwort, M; Schäfer, I; Gumz, A; Degkwitz, P; Schulte, B; König, H H; Konnopka, A; Bauer, M; Bechdolf, A; Correll, C; Juckel, G; Klosterkötter, J; Leopold, K; Pfennig, A; Lambert, M

2013-11-01

Numerous birth-control studies, epidemiological studies, and observational studies investigated mental health and health care in childhood, adolescence and early adulthood, including prevalence, age at onset, adversities, illness persistence, service use, treatment delay and course of illness. Moreover, the impact of the burden of illness, of deficits of present health care systems, and the efficacy and effectiveness of early intervention services on mental health were evaluated. According to these data, most mental disorders start during childhood, adolescence and early adulthood. Many children, adolescents and young adults are exposed to single or multiple adversities, which increase the risk for (early) manifestations of mental diseases as well as for their chronicity. Early-onset mental disorders often persist into adulthood. Service use of children, adolescents and young adults is low, even lower than in adult patients. Moreover, there is often a long delay between onset of illness and first adequate treatment with a variety of linked consequences for poorer psychosocial prognosis. This leads to a large burden of illness with respect to disability and costs. As a consequence several countries have implemented so-called "early intervention services" at the border of child and adolescent and adult psychiatry. Emerging studies show that these health care structures are effective and efficient. Part 2 of the present review focuses on illness burden including disability and costs, deficits of the present health care system in Germany, and efficacy and efficiency of early intervention services. © Georg Thieme Verlag KG Stuttgart · New York.

Comorbidity - a troublesome factor in PTSD treatment.

PubMed

Dadić-Hero, Elizabeta; Torić, Ines; Ruzić, Klementina; Medved, Paola; Graovac, Mirjana

2009-09-01

Posttraumatic stress syndrome (PTSD) is a disorder which emerges after the patient has experienced one or more psychotraumatic events, which equally include neurobiological deregulation and psychological dysfunction. Comorbidity is present in more than 80% of the diagnosed cases of PTSD, which makes treatment of the primary disorder very difficult. It has been identified that PTSD can be found in comorbidity with other psychiatric disorders as well as with physical illnesses. This study presents aged 42, who has been psychiatrically treated for the past 12 years, with a diagnose of chronic PTSD and who subsequently developed depression. The patient has been treated for psoriasis for the past seven years, and two years ago, had to undergo surgery due to bladder carcinoma, followed by a radiotherapy course. Multiple comorbidity significantly makes the treatment of the primary illness very difficult and it limits the choice of pharmacotherapy in ambulatory conditions.

The economic impact of chronic pain in adolescence: methodological considerations and a preliminary costs-of-illness study.

PubMed

Sleed, Michelle; Eccleston, Christopher; Beecham, Jennifer; Knapp, Martin; Jordan, Abbie

2005-12-15

Chronic pain in adulthood is one of the most costly conditions in modern western society. However, very little is known about the costs of chronic pain in adolescence. This preliminary study explored methods for collecting economic-related data for this population and estimated the cost-of-illness of adolescent chronic pain in the United Kingdom. The client service receipt inventory was specifically adapted for use with parents of adolescent chronic pain patients to collect economic-related data (CSRI-Pain). This method was compared and discussed in relation to other widely used methods. The CSRI-Pain was sent to 52 families of adolescents with chronic pain to complete as a self-report retrospective questionnaire. These data were linked with unit costs to estimate the total care cost package for each family. The economic impact of adolescent chronic pain was found to be high. The mean cost per adolescent experiencing chronic pain was approximately 8,000 pounds per year, including direct and indirect costs. The adolescents attending a specialised pain management unit, who had predominantly non-inflammatory pain, accrued significantly higher costs, than those attending rheumatology outpatient clinics, who had mostly inflammatory diagnoses. Extrapolating the mean total cost to estimated UK prevalence data of adolescent chronic pain demonstrates a cost-of-illness to UK society of approximately 3,840 million pounds in one year. The implications of the study are discussed.

Socioeconomic variation in the financial consequences of ill health for older people with chronic diseases: a systematic review.

PubMed

Valtorta, Nicole K; Hanratty, Barbara

2013-04-01

Chronic disease has financial consequences for older adults, but it is unclear how this varies between conditions with different disease trajectories. The aim of this study was to review evidence on the financial burden associated with cancer, heart failure or stroke in older people, to identify those most at risk of financial adversity. We systematically searched nine databases for studies with data on the illness-related financial burden (objective), or on the perception of financial hardship (subjective), of older patients and/or their informal caregivers in high-income countries. We identified thirty-eight papers published in English between 1984 and 2012. Studies fell into three categories: those reporting direct, out of pocket, costs (medical and/or non-medical); studies of the indirect costs associated with illness (such as wage or income loss); and papers reporting general financial or economic burdens secondary to illness. Three out of four studies focused on people with cancer. More affluent people had greater out of pocket costs, but were less financially burdened by illness, compared with older adults from lower socioeconomic backgrounds. Disadvantaged patients and families were more likely to report experiences of financial hardship, and spend a higher proportion of their income on all expenses related to their diagnoses. This review illustrates how little is known about the financial adversity experienced by patients with some common chronic conditions. It raises the possibility that higher expenditure by more affluent older people may be creating inequalities in how chronic illness is experienced. The development of effective strategies for financial protection at older ages will require more information on who is affected and at which point in their illness trajectory. Copyright © 2013 Elsevier Ireland Ltd. All rights reserved.