This article examines the use of lobotomy as a treatment for chronic intractable pain and reconstructs then-common perceptions of pain and of the patients who suffered from it. It delineates the social expectations and judgments implicit in physicians' descriptions of the patients, analyzing what was expected from such patients and how the medical establishment responded to non-normative expressions of suffering. I argue that the medicalized response to an expectation for normativity demonstrates the convergence between psychiatric and palliative interventions. Based on a historically informed perspective of psychiatric interventions in the field of pain medicine, I examine the use of psychiatric medications for pain syndromes today and evaluate the interface between depression, chronic pain, and terminal illness. While not detracting from the medical imperative to alleviate pain, I question the usage of social criteria and normative judgments in the clinical decision of how to treat pain. What normalizing social function does the use of psychiatric interventions in pain treatment fulfill? This approach leads to a reexamination of perceptions of dualism in pain medicine.
Gerson, S N
Corporate America's healthcare cost crisis and the country's budget deficit are forcing limits on the resources used to finance healthcare, including mental healthcare. At the same time, the 1990 Americans with Disabilities Act bars discrimination against patients with chronic illnesses, including chronic mental illness. Therefore, corporate benefits managers need guidance on how to ethically and rationally allocate scarce clinical resources to those high-morbidity insureds who utilize disproportionate amounts of these resources. In particular, how should we define the public/private interface: When do patients who repeatedly fail to respond to treatment fall out of the private sector's responsibility? The author, medical director for a leading behavioral healthcare utilization management company, offers the following guidelines recommending reasonable and practical limitations on trials of treatment for seven common categories of difficult psychiatric patients.
Having a long-term, or chronic, illness can disrupt your life in many ways. You may often be tired and in pain. Your illness might affect your ... able to work, causing financial problems. For children, chronic illnesses can be frightening, because they may not ...
Edgar, Maggie; Uhl, Monica
These guidelines are intended to assist states and local communities in developing quality respite services that meet the diverse needs of families and children with disabilities, with chronic and terminal illnesses, or at risk of abuse or neglect. The guidelines support the philosophy that all families can benefit from temporary intervals of rest…
... is present. For More Information Share Chronic Illness & Mental Health Download PDF Download ePub Order a free hardcopy ... For more information, see the National Institute of Mental Health (NIMH) booklet on Depression at http://www.nimh. ...
Classroom teachers of terminally ill children face potentially difficult, challenging, rewarding and professionally expanding experiences which require an understanding of the basic needs of the dying. Strategies for teaching such children include literature, writing, role playing, magic circle discussions, play therapy, art therapy, counseling,…
difficulties commonly seen in patients with Chronic Multisymptom Illnesses (CMI) (i.e., fibromyalgia , chronic fatigue syndrome, Gulf War Illnesses, etc.); to...Avera Research Institute, Sioux Falls, SD. 15. SUBJECT TERMS chronic multisymptom illnesses, fibromyalgia , Gulf War Illness, chronic pain 16. SECURITY...16 2.4.6 Internet and Telehealth Enhanced CBT for the Management of Fibromyalgia
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…
Pozo, Jesús; Argente, Jesús
Delayed puberty can be defined as the lack of pubertal development at an age of 2 SD above the mean, which corresponds to an age of approximately 14 years for males and 13 years for females, taking both sex and ethnic origin into consideration. Its incidence associated with chronic illnesses is unknown; however, its clinical importance is relevant due to the larger percentage of patients with chronic disorders surviving until the age of puberty. Virtually every child with any chronic disease could present with delayed puberty (due to recurrent infections, immunodeficiency, gastrointestinal disease, renal disturbances, respiratory illnesses, chronic anaemia, endocrine disease, eating disorders, exercise and a number of miscellaneous abnormalities). Pubertal delay associated with chronic illness is accompanied by a delay in growth and the pubertal growth spurt. The degree to which growth and pubertal development are affected in chronic illness depends upon the type of disease and individual factors, as well as on the age at illness onset, its duration and severity. The earlier its onset and the longer and more severe the illness, the greater the repercussions on growth and pubertal development. The mechanism that trigger the start of physiological puberty remain unknown. Although malnutrition is probably the most important mechanism responsible for delayed puberty, emotional deprivation, toxic substances, stress and the side effects of chronic therapy, among others, have been implicated in the pathophysiology of delayed puberty. Therefore, early diagnosis is essential and appropriate and specific therapy fundamental.
Fonseca, Claudia; Fleischer, Soraya; Rui, Taniele
This is a review of five different books dealing with some aspect of what might be termed a "chronic illness" - Alzheimer's disease, lupus, addiction, erectile dysfunction, and leprosy. The array of different subjects examined in these books points to the negotiable limits of this hugely open category. What exactly constitutes an "illness"? Why not use a less biomedical term instead: "disturbance", "problem", or simply "condition"? And how are we to understand "chronic" - simply as the flipside of "acute" or "curable"?
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…
von Peter, Sebastian
The term 'chronicity' is still widely used in psychiatric discourse and practice. A category employed in political, administrative and therapeutic contexts, it guides practitioners' beliefs and actions. This paper attempts a review of the attitudes and procedures that result as a consequence of identifying 'chronically' disturbed identities in clinical practice. An essentially social, relational and materialist understanding of mental illness is used to highlight the kind of thinking underlying the notion of 'chronic' identities in day-to-day psychiatric routines. Problematising the notions of singularity and expressiveness, as well as mind/body- and self/other-distinctions, it claims the category itself is responsible for creating a 'chronic' kind of being. A spatial metaphor is presented in the conclusion, illustrating a mental strategy by which we can re-shape our thinking about 'chronic' identities. It attempts to describe how the shift from an epistemological to a praxeographic approach could build a more complete understanding of mental illness.
... ICU) on a breathing machine (mechanical ventilator or respirator) for many days, this information about chronic critical ... a Tracheotomy? A breathing machine (mechanical ventilator or respirator) helps the lungs breathe and provides oxygen. When ...
Loneliness is a universal phenomenon, and its pain is intensified by a diagnosis of a terminal illness. The present study is an investigation of the strategies used by patients with Multiple sclerosis (MS), by individuals diagnosed with cancer, and by the general population to cope with loneliness. Three hundred and twenty nine MS patients, 315…
Levy, Michael H.
Two main goals in the care of the terminally ill are to optimize the quality of their remaining life and to alleviate the distress of their survivors. Pain control research has contributed significantly to meeting those goals, but continued progress is needed in both basic studies and expanded applications of new techniques. (Author/NB)
In trying to comprehend a culture and its ways of structuring the world, much can be learned from addressing the manner in which intimate family relationships are ordered and family crises channeled toward care. A family's experience with illness cannot be considered in isolation from the cultural milieu in which it occurs. Family adaptation to cancer diagnosis is a continuous motion between many critical strata--a fragile oscillation between hope and desperation. Processes for optimal functioning and the well-being of members are seen to vary over time, as challenges unfold and families evolve across the life cycle and illness trajectory. The manner in which the healthcare system and family manage illness and terminal care is a particularly helpful window into the cultural, religious and traditional values of every family in a particular society.
Kolva, Elissa; Rosenfeld, Barry; Pessin, Hayley; Breitbart, William; Brescia, Robert
Context Anxiety in terminal cancer is linked to diminished quality of life, yet overall it is poorly understood with regard to prevalence and relationship to other aspects of psychological distress. Objectives This study examines anxiety in terminally ill cancer patients, including the prevalence of anxiety symptoms, the relationship between anxiety and depression, differences in anxiety between participants receiving inpatient palliative care and those receiving outpatient care, and characteristics that distinguish highly anxious from less anxious patients. Methods Participants were 194 patients with terminal cancer. Approximately half (n = 103) were receiving inpatient care in a palliative care facility and half (n = 91) were receiving outpatient care in a tertiary care cancer center. The Hospital Anxiety and Depression Scale was used to assess anxiety and depression, and was administered along with measures of hopelessness, desire for hastened death, and social support. Results Moderately elevated anxiety symptoms were found in 18.6% of participants (n = 36) and 12.4% (n = 24) had clinically significant anxiety symptoms. Level of anxiety did not differ between the two treatment settings. However, participants receiving palliative care reported significantly higher levels of depression and desire for hastened death. A multivariate prediction model indicated that belief in an afterlife, social support, and anxiolytic and antidepressant use were unique, significant predictors of anxiety. Conclusion Severity of anxiety symptoms did not differ between the study sites, suggesting that anxiety may differ from depression and desire for hastened death in the course that it takes over the duration of terminal cancer. PMID:21565460
Nagi, Mostafa H.; Lazerine, Neil G.
Analyzed attitudes of 614 Protestant and Catholic Cleveland clergy toward terminal illness and euthanasia. Clergy responses revealed that, although eager to prolong life, terminally ill patients feared prolonged illness more than death. The controversial nature of euthanasia became more apparent with clergy who had more training in death…
Goodwin, Stephanie A.; Morgan, Susanne
In this article, the authors discuss the hidden epidemic in higher education. They describe the stigma of chronic illness and argue that the invisibility of chronic illness may elicit particularly problematic responses from others, especially when faculty work in a context where people are expected to be highly productive and have unlimited…
... htm Talking with a child about a parent's terminal illness To use the sharing features on this ... soon after you find out your cancer is terminal. Being included in this difficult transition can help ...
Silber, T J
This article relates chronic illness in adolescents to a sociological model of deviance. This is an area of controversy: the views of Freidson, Lorber and Robinson are presented as being representative of the dispute. 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 perception and rules explicit. The concept of the chronically ill adolescent as deviant is descriptive and devoid of value judgment. Only through such rigorous assessment is it possible to gain a realistic understanding of the societal role in the life of the chronically ill adolescent.
Daneault, Serge; Lussier, Véronique; Mongeau, Suzanne; Yelle, Louise; Côté, Andréanne; Sicotte, Claude; Paillé, Pierre; Dion, Dominique; Coulombe, Manon
Objective To better understand the role of hope among terminally ill cancer patients. Design Qualitative analysis. Setting A tertiary specialized cancer centre in Canada. Participants Cancer patients in palliative care with an estimated remaining life expectancy of 12 months or less (N = 12) and their loved ones (N = 12) and treating physicians (N = 12). Methods Each patient underwent up to 3 interviews and identified a loved one who participated in 1 interview. Treating physicians were also interviewed. All interviews were fully transcribed and analyzed by at least 2 investigators. Interviews were collected until saturation occurred. Main findings Seven attributes describe the experiences of palliative cancer patients and their caregivers: hope as an irrational phenomenon that is a deeply rooted, affect-based response to adversity; initial hope for miraculous healing; hope as a phenomenon that changes over time, evolving in different ways depending on circumstances; hope for prolonged life when there is no further hope for cure; hope for a good quality of life when the possibility of prolonging life becomes limited; a lack of hope for some when treatments are no longer effective in curbing illness progression; and for others hope as enjoying the present moment and preparing for the end of life. Conclusion Approaches aimed at sustaining hope need to reflect that patients’ reactions might fluctuate between despair and a form of acceptance that leads to a certain serenity. Clinicians need to maintain some degree of hope while remaining as realistic as possible. The findings also raise questions about how hope influences patients’ perceptions and acceptance of their treatments. PMID:27521394
Healthy Lifestyle End of life When terminal illness affects a loved one, it isn't always easy to know how to react. Find out how to offer support and ... support to a loved one who has a terminal illness can be challenging. What can you say ...
Kralik, Debbie; van Loon, Antonia; Visentin, Kate
This article advances the consideration of resilience as an important concept in the transitional process of learning to adapt to life with chronic illness, by utilising interactional processes inherent in participatory action research (PAR) that may strengthen a person's capacity to live well with long-term illness. Sharing experiences and…
Osuna, E; Pérez-Cárceles, M D; Esteban, M A; Luna, A
OBJECTIVES: To analyse the attitudes of medical personnel towards terminally ill patients and their right to be fully informed. DESIGN: Self-administered questionnaire composed of 56 closed questions. SETTING: Three general hospitals and eleven health centres in Granada (Spain). The sample comprised 168 doctors and 207 nurses. RESULTS: A high percentage of medical personnel (24.1%) do not think that informing the terminally ill would help them face their illness with greater serenity. Eighty-four per cent think the patient's own home is the best place to die: 8.9% of the subjects questioned state that the would not like to be informed of an incurable illness. CONCLUSION: In our opinion any information given should depend on the patient's personality, the stage of the illness and family circumstances. Our study confirms that a hospital is not the ideal environment for attending to the needs of the terminally ill and their families. PMID:9602997
Khanna, R.; Singh, R.P.N.
SUMMARY A study of 50 terminally ill cancer patients revealed that 52% were uninformed regarding their diagnosis and prognosis. In almost all cases the relatives had been adequately informed. No less than 82% of the terminally ill patients showed an awareness of the fatal prognosis. Most of the patients found the communication with the doctor and the relatives as unsatisfactory. Comparing this group with another group of non-terminal medically ill patients showed striking differences between the two groups. The findings are compared with those reported from the West and the implications of the above observations discussed. PMID:21927320
Royster, Lynn; Marshall, Olena
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…
Anderson, Ruth A.; Bailey, Donald E.; Wu, Bei; Corazzini, Kirsten; McConnell, Eleanor S.; Thygeson, N. Marcus; Docherty, Sharron L.
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
Grau Rubio, Claudia; Fernández Hawrylak, M
Pediatric illnesses are always a family problem. Hospitalization, treatments and their long term consequences constitute a challenge for the family. In this paper, we describe the structural, procedural and emotional alterations that affect the family dynamic. We argue that the child should be treated within the family context and propose a multi-dimensional intervention model centered on the family's singularities and specific needs, the support available in their environment, the development of capacities and resilience, and also the organization of user-centered services that are coordinated with all the services provided by the community.
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…
Silber, Tomas J.
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)
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)
Daci, E; van Cromphaut, S; Bouillon, R
Bone is permanently renewed by the coordinated actions of bone-resorbing osteoclasts and bone-forming osteoblasts, which model and remodel bone structure during growth and adult life. The origin of osteoblastic cells (osteoblasts, osteocytes and bone-lining cells) differs from that of osteoclasts, but both cell groups communicate with each other using cytokines and cell-cell contact as to optimally maintain bone homeostasis. This communication in many ways uses the same players as the communication between cells in the immune system. During acute life-threatening illness massive bone resorption is the rule, while bone formation is suppressed. During chronic illness, the balance between bone formation and bone resorption also shifts, frequently resulting in decreased bone mass and density. Several factors may contribute to the osteopenia that accompanies chronic illness, the most important being undernutrition and low body weight, inflammatory cytokines, disorders of the neuroendocrine axis (growth hormone/IGF-1 disturbances, thyroid and gonadal deficiency), immobilization, and the long-term use of glucocorticoids. Their combined effects not only influence the generation and activity of all bone cells involved, but probably also regulate their life span by apoptotic mechanisms. Osteopenia or even osteoporosis and bone fragility, and before puberty also decreased linear growth and lower peak bone mass are therefore frequent consequences of chronic illnesses.
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…
Kames, L D; Naliboff, B D; Heinrich, R L; Schag, C C
Two studies are presented which describe the development of a problem-oriented psychosocial screening instrument for use in health care settings. Reliability and validity data are presented on the Chronic Illness Problem Inventory (CIPI) which demonstrate its ability to document accurately patient's specific problems in areas of physical limitations, psychosocial functioning, health care behaviors and marital adjustment. A study is also presented which compares the problems of patients with three distinct chronic illnesses: pain, obesity, and respiratory ailments. Results indicate a significantly greater severity of problems for pain patients and especially patients with multiple pain complaints. Problem areas common to all three illness groups are discussed in the context of providing better comprehensive treatment for chronically ill patients.
Lerum, Sverre Vigeland; Solbraekke, Kari Nyheim; Holmøy, Trygve; Frich, Jan C
This paper explores the meaning of chronicity and terminality in motor neurone disease (MND), also known as amyotrophic lateral sclerosis (ALS). There is no known cause or cure for MND, and expected survival is 2-5 years, but several interventions may improve or prolong life. This study draws on qualitative interview data with health professionals in hospitals and primary care, and family carers, in Norway. The actors emphasised chronic and terminal aspects in subtly different ways along the entire illness trajectory, also when recounting the trajectory in retrospect. As a consequence of improved health services and medical technology the distinction between chronicity and terminality has become more vague and sometimes ambiguous. We suggest the concept unstable terminality to describe this ambiguity. While MND is a fatal diagnosis; it may be contested, as contingencies and interventions create an indefinite time scope. The instability creates challenges for primary care which is dependent on prognostic information to organise their effort; hospitals tackle the instability by pre-scheduled consultations allowing for avoidance of an explicit prognosis. Some carers experienced what we understand as a disruption within the disruption, living with chronic and terminal illness simultaneously, which made the limbo phase more challenging to overcome.
Ghio, P; Dell'Orco, L
The aim of this work is to be able to publish the information concerning communication with cancer patients as recommended in England. The observation and the study protocol during the stay abroad have been given the opportunity to stylize specific information on the methodology of communication of important information to terminally ill patients. It seems readily apparent as they characterized by both technical precision and sensivity to emotions and descriptions for the individual patient. How is shared by all chronic pain is predominantly complex emotion, a mix of additions and perceived physical and emotional pain - emotional. Because accurate information is beneficial to the patient and that really is not turned, so to speak, a "bullet" it is necessary that you have created, over time, a concrete "therapeutic alliance" between body physician, patient and possibly family. This arises, for sure, even at first accepted the patient during the clinical visit attentive to detail, is renewed in the definition of the common objective to be achieved, so analgesia and it is expressed in the certainty that the physician provides all the resources realistically available. It is then up to the sensitivity of the operator, doctor and/or nurse, described in the "take charge" find, from time to time, the words and manners, verbal and nonverbal, to respond fully to questions of the patient same.
Burns, William J.; Zweig, April R.
The performance on the Draw-A-Face Test of fifty-four 3 1/2- to 12-year-old girls and boys, chronically ill with blood disease, were compared with the performance of 115 healthy girls and boys. While sex and age differences were obtained for both groups, few differences were found between the groups. Results were interpreted in terms of coping…
Loomis, Margaret T.; Williams, T. Franklin
Studied the quality of terminal care in 40 patients in an acute care facility and a chronic care facility. Minimial difficulty was observed in making the transition from active to comfort care. An evaluation method and a model of terminal care emphasizing improved communication and emotional support are proposed. (Author/JAC)
Fraenkel, William A.
One clinical psychologist who worked with terminally ill, end-stage Acquired Immune Deficiency Syndrome (AIDS) patients in a hospice type setting experienced more than 150 deaths over an 18-month time period. Many of the patients denied that they had AIDS; some distinguished between having AIDS and testing positive for Human Immunodeficiency Virus…
Librach, S. L.
Pain control is still a prime concern in managing patients with terminal illnesses, such as AIDS and cancer. I review some special issues that confront family physicians providing such care. Issues include common blocks to good pain management, understanding different types of pain, and the appropriate use of adjunct analgesic drugs and therapies. PMID:7539651
Heller, Kathryn Wolff; Coleman, Mari Beth; Best, Sherwood J.; Emerson, Judith
This study examined teachers' knowledge and support when working with students with terminal illness or having experienced a student death. One hundred and ninety teachers of students with physical or multiple disabilities responded to a 40 item questionnaire that was distributed nationally. Results indicated that teachers have greater knowledge…
Jarrett, William H.
Proposals have been developed to clarify physician responsibility in withholding treatment to terminally ill patients. These proposals seek to provide a legal shield against malpractice proceedings and to reduce confusion over how to resolve high medical costs through standardizing procedures for withholding treatment. When first published,…
Morita, Tatsuya; Murata, Hisayuki; Kishi, Emi; Miyashita, Mitsunori; Yamaguchi, Takuhiro; Uchitomi, Yosuke
Although recent empirical studies reveal that fostering patients' perception of meaning in their lives is an essential task for palliative care clinicians, few studies have reported the effects of training programs for nurses specifically aimed at improving these skills. The primary aim of this randomized controlled trial was to determine the effects of an educational workshop focusing on patients' feelings of meaninglessness on nurses' confidence, self-reported practice, and attitudes toward caring for such patients, in addition to burnout and meaning of life. The study was designed as a single-institution, randomized controlled trial using a waiting list control. The intervention consisted of eight 180-minute training sessions over four months, including lectures and exercises using structured assessment. A total of 41 nurses were randomly allocated to three groups, which were separately trained, and all were evaluated four times at three-month intervals (before intervention, between each intervention, and after the last intervention). Assessments included validated Confidence and Self-Reported Practice scales, the Attitudes Toward Caring for Patients Feeling Meaningless Scale (including willingness to help, positive appraisal, and helplessness items), the Maslach Burnout Scale, job satisfaction, and the Functional Assessment of Chronic Illness Therapy-Spiritual (FACIT-Sp). One participant withdrew from the study before the baseline evaluation, and the remaining 40 nurses completed the study. The nurses were all female and had a mean age of 31+/-6.4, and mean clinical experience of 8.9+/-5.5 years. There were no significant differences in background among the groups. The intervention effects were statistically significant on the Confidence Scale, the Self-Reported Practice Scale, and the willingness to help, positive appraisal, and helplessness subscales, in addition to the overall levels of burnout, emotional exhaustion, personal accomplishment, job satisfaction
Rosenfeld, Barry; Pessin, Hayley; Lewis, Charles; Abbey, Jennifer; Olden, Megan; Sachs, Emily; Amakawa, Lia; Kolva, Elissa; Brescia, Robert; Breitbart, William
Hopelessness has become an increasingly important construct in palliative care research, yet concerns exist regarding the utility of existing measures when applied to patients with a terminal illness. This article describes a series of studies focused on the exploration, development, and analysis of a measure of hopelessness specifically intended for use with terminally ill cancer patients. The 1st stage of measure development involved interviews with 13 palliative care experts and 30 terminally ill patients. Qualitative analysis of the patient interviews culminated in the development of a set of potential questionnaire items. In the 2nd study phase, we evaluated these preliminary items with a sample of 314 participants, using item response theory and classical test theory to identify optimal items and response format. These analyses generated an 8-item measure that we tested in a final study phase, using a 3rd sample (n = 228) to assess reliability and concurrent validity. These analyses demonstrated strong support for the Hopelessness Assessment in Illness Questionnaire providing greater explanatory power than existing measures of hopelessness and found little evidence that this assessment was confounded by illness-related variables (e.g., prognosis). In summary, these 3 studies suggest that this brief measure of hopelessness is particularly useful for palliative care settings. Further research is needed to assess the applicability of the measure to other populations and contexts. PMID:21443366
Rosenfeld, Barry; Pessin, Hayley; Lewis, Charles; Abbey, Jennifer; Olden, Megan; Sachs, Emily; Amakawa, Lia; Kolva, Elissa; Brescia, Robert; Breitbart, William
Hopelessness has become an increasingly important construct in palliative care research, yet concerns exist regarding the utility of existing measures when applied to patients with a terminal illness. This article describes a series of studies focused on the exploration, development, and analysis of a measure of hopelessness specifically intended…
Music's power to improve the 'human condition' has been acknowledged since ancient times. Something as counter-intuitive as weeping in response to music can ameliorate suffering for a time even for terminally ill patients. Several benefits-including catharsis, communication, and experiencing vitality-can be associated with grieving in response to "sad" music. In addressing the potential rewards of such an activity for terminally ill patients, this author combines concepts from philosopher Jerrold R. Levinson's article, entitled "Music and Negative Emotion," an illustration from a major motion picture, and supporting research from medical reports and aesthetic writings. Carefully offering this experience is recommended for patients who retain the capacity to express preference.
Trigwell, P.; Hatcher, S.; Johnson, M.; Stanley, P.; House, A.
OBJECTIVE--To investigate the presence of abnormal illness behaviour in patients with a diagnosis of chronic fatigue syndrome. DESIGN--A cross sectional descriptive study using the illness behaviour questionnaire to compare illness behaviour scores and illness behaviour profiles of patients with chronic fatigue syndrome and patients with multiple sclerosis. SETTING--A multidisciplinary fatigue clinic and a teaching hospital neurology outpatient clinic. SUBJECTS--98 patients satisfying the Oxford criteria for chronic fatigue syndrome and 78 patients with a diagnosis of multiple sclerosis. MAIN OUTCOME MEASURE--Responses to the 62 item illness behaviour questionnaire. RESULTS--90 (92%) patients in the chronic fatigue syndrome group and 70 (90%) in the multiple sclerosis group completed the illness behaviour questionnaire. Both groups had significantly high scores on the general hypochondriasis and disease conviction subscales and significantly low scores on the psychological versus somatic concern subscale, as measured in relation to normative data. There were, however, no significant differences in the subscale scores between the two groups and the two groups had identical illness behaviour profiles. CONCLUSION--Scores on the illness behaviour questionnaire cannot be taken as evidence that chronic fatigue syndrome is a variety of abnormal illness behaviour, because the same profile occurs in multiple sclerosis. Neither can they be taken as evidence that chronic fatigue and multiple sclerosis share an aetiology. More needs to be known about the origins of illness beliefs in chronic fatigue syndrome, especially as they are important in determining outcome. PMID:7613314
A study of 10 chronically ill women showed how they positively reconstructed self and identity through engaging in textile artwork. Findings suggest that meaningful artistic occupation may provide a source of positive identity for people with chronic illness. (Contains 24 references.) (JOW)
Kayser-Jones, Jeanie; Kris, Alison E; Lim, Kyung-Choon; Walent, Ronald J; Halifax, Elizabeth; Paul, Steven M
The purpose of this prospective, anthropological study was to describe and analyze the experiences and care of terminally ill nursing home residents who were admitted with or acquired pressure ulcers (PUs) after admission. Data were collected in two proprietary nursing homes. Participant observation, in-depth interviews, event analysis, and chart review were used to obtain data. A total of 64 (54.7%) of the 117 terminally ill residents in the study had PUs; 52 (81.3%) of whom died with PUs. The findings disclosed that the absence of family advocacy, inability to speak English, and inadequate staffing and lack of supervision, along with other previously reported risk factors, contributed to the development of PUs. Specifically, inadequate staffing and lack of supervision led to inadequate assistance at mealtime, infrequent repositioning, and inadequate continence care, which in turn led to weight loss, unrelieved pressure on bony prominences, and moist, irritated skin. The outcome was a high rate of residents dying with PUs. Knowledge of and attention to these risk factors can guide nurses in the prevention and management of PUs.
Liddy, Clare; Dusseault, Joanne J.; Dahrouge, Simone; Hogg, William; Lemelin, Jacques; Humber, Jennie
OBJECTIVE To examine the feasibility and efficacy of integrating home health monitoring into a primary care setting. DESIGN A mixed method was used for this pilot study. It included in-depth interviews, focus groups, and surveys. SETTING A semirural family health network in eastern Ontario comprising 8 physicians and 5 nurses caring for approximately 10 000 patients. PARTICIPANTS Purposeful sample of 22 patients chosen from the experimental group of 120 patients 50 years old or older in a larger randomized controlled trial (N = 240). These patients had chronic illnesses and were identified as being at risk based on objective criteria and physician assessment. INTERVENTIONS Between November 2004 and March 2006, 3 nurse practitioners and a pharmacist installed telehomecare units with 1 or more peripheral devices (eg, blood-pressure monitor, weight scale, glucometer) in patients’ homes. The nurse practitioners incorporated individualized instructions for using the unit into each patient’s care plan. Patients used the units every morning for collecting data, entering values into the system either manually or directly through supplied peripherals. The information was transferred to a secure server and was then uploaded to a secure Web-based application that allowed care providers to access and review it from any location with Internet access. The devices were monitored in the office on weekdays by the nurse practitioners. MAIN OUTCOME MEASURES Acceptance and use of the units, patients’ and care providers’ satisfaction with the system, and patients’ demographic and health characteristics. RESULTS All 22 patients, 12 men and 10 women with an average age of 73 years (range 60 to 88 years), agreed to participate. Most were retired, and a few were receiving community services. Common diagnoses included hypertension, diabetes, cardiovascular disease, and chronic obstructive pulmonary disease. All patients had blood pressure monitors installed, 11 had wired weight
Granda-Cameron, Clara; Houldin, Arlene
The purpose of this concept analysis of good death was to examine the attributes of a good death and explore the changes of the concept over time and its impact on terminally ill patients. The method used for this analysis was the Rodgers' evolutionary method. A literature search was completed using Medline Ovid and Journal Storage (JSTOR).The findings describe the evolution of the good death concept over time from the prehistoric era followed by premodern, modern, and postmodern times. In addition, information is presented about surrogate terms, attributes, antecedents, and consequences associated with good death followed by analysis and discussion of the findings. General attributes of a good death include pain and symptom management, awareness of death, patient's dignity, family presence, family support, and communication among patient, family, and health care providers.
Kelly, B; Burnett, P; Pelusi, D; Badger, S; Varghese, F; Robertson, M
This exploratory study investigated factors associated with the wish to hasten death among a sample of terminally ill cancer patients. Semi-structured interviews conducted on a total of 72 hospice and home palliative care patients were subjected to qualitative analysis using QSR-NUDIST. The main themes to emerge suggested that patients with a high wish to hasten death had greater concerns with physical symptoms and psychological suffering, perceived themselves to be more of a burden to others, and experienced higher levels of demoralization, while also reporting less confidence in symptom control, fewer social supports, less satisfaction with life experiences and fewer religious beliefs when compared with patients who had a moderate or no wish to hasten death. The implications of these findings will be discussed.
The question of disclosing the diagnosis to terminally ill patients was investigated by means of a semi-standardized interview of 56 subjects who had been 'told the truth' about their condition. The effects and interdependence of the factors of age, personality structure (EPI neuroticism scale), duration of knowledge, social contact, and religiousness, on the patient's ability to cope with the information were examined. The process of adjustment was assessed according to the stages proposed by Kübler-Ross (1969). Using the statistical model of path analysis, it was possible to evaluate these individual factors and present linearly their interrelationships. These results can offer medical staff the following guidelines: Three factors (a) advanced years, (b) good social contact, and (c) optimally unneurotic personality structure, provide the optimum conditions for a positive adjustment to the disclosure of a diagnosis of fatal illness. If, however, only one or two of these factors are involved, or if they are evident only to a slight degree, then conditions for telling the truth are less positive. On the other hand, in the case of (a) youth, (b) restricted social contact, and (c) a more markedly neurotic person, particular caution is recommended, since the danger of a negative reaction, and indeed even of suicide, must be reckoned with.
This article explores how individuals might make sense of chronic illness. The spiritual aspect of self is described both as being central to finding meaning in suffering with a chronic illness and also the source of hope in meeting the challenges faced. Culture as the template for interpreting the significance of chronic ill health at a personal, familial and societal level is also considered. A conceptual model for understanding life transitions is modified to incorporate the spiritual and cultural perspectives of making sense of chronic illness in relation to coping skills. In understanding how patients make sense of their circumstances nurses are more likely to be able to offer appropriate support to effect coping.
... art class, play an instrument, or listen to music. Call or spend time with a friend. Finding ... Larsen PD, ed. Lubkin's Chronic Illness: Impact and Intervention . 9th ed. Burlington, MA: Jones and Bartlett Learning; ...
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…
Irwin, Mary Kay; Elam, Megan
Novel treatments are improving the prognosis for many illnesses, making it possible to survive diseases that were once considered fatal. With these advancements comes great responsibility to ensure quality of life for those living with chronic illness. Educators are among the group of professionals accountable for ensuring quality of life…
Nowicka-Sauer, Katarzyna; Banaszkiewicz, Dorota; Staśkiewicz, Izabela; Kopczyński, Piotr; Hajduk, Adam; Czuszyńska, Zenobia; Ejdys, Mariola; Szostakiewicz, Małgorzata; Sablińska, Agnieszka; Kałużna, Anna; Tomaszewska, Magda; Siebert, Janusz
The study evaluates the psychometric properties of a Polish translation of the Brief Illness Perception Questionnaire. A total of 276 patients with chronic conditions (58.7% women) completed the Brief Illness Perception Questionnaire and the Hospital Anxiety and Depression Scale. The internal consistency of the Polish Brief Illness Perception Questionnaire measured with Cronbach's alpha was satisfactory (α = 0.74). Structural validity was demonstrated by significant inter-correlations between the Brief Illness Perception Questionnaire components. Discriminant validity was supported by the fact that the Brief Illness Perception Questionnaire enables patients with various conditions to be differentiated. Significant correlations were found between Brief Illness Perception Questionnaire and depression and anxiety levels. The Polish Brief Illness Perception Questionnaire thus evaluated is a reliable and valid tool.
Riccio, Cynthia A.; Pliego, Jessica; Rae, William A.
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…
Munns, C F; Cowell, C T
Osteoporosis secondary to chronic disease in children has emerged as a major health issue. As the severity of a child's illness increases, so too does the number of factors affecting their bone health. Determinants of bone health in children include level of mobility, exposure to osteotoxic medication, nutritional status, calcium and vitamin D intake, chronic inflammation and pubertal development.
Waldrop, Deborah P.
Caregivers experience multiple losses during the downhill trajectory of a loved one's terminal illness. Using mixed methods, this two-stage study explored caregiver grief during a terminal illness and after the care recipient's death. Caregiver grief was a state of heightened responsiveness during end-stage care: anxiety, hostility, depression,…
Manis, Amie A.; Bodenhorn, Nancy
This article presents a review of the literature on counseling adults with terminal illness, particularly the literature on the nature of preparation that counselors and other professionals who attend to the needs of adults with a terminal illness require. The authors review information and findings from philosophical, psychological, practical,…
The number of terminally ill prison inmates rises each year. Mental health professionals are uniquely prepared to provide therapy during the end-of-life process with their assessment, training, empathy, and communication skills. This case study examines the six-month therapy of one terminally ill inmate, using a client-centered approach. Drawing…
Addressing the sexual sequelae of chronic disease and its treatment is now accepted as a fundamental part of healthcare. Most of the sexual effects of chronic disease are negative, and ongoing illness continues to modulate a woman's sexual self-image, energy and interest in sexual activity, as well as her ability to respond to sexual stimuli with pleasurable sensations, excitement, orgasm and freedom from pain with genital stimulation or intercourse. Nevertheless, for many women with chronic illness, sexuality remains extremely important despite the commonly associated fatigue and acquired sexual dysfunctions; sexual resilience can be substantial. Following recovery from cancer surgery, chemotherapy and radiation, prognosis can be excellent and a return to full health can often be expected, and yet, there may have been devastating changes to sexual function owing to the cancer treatment. Women with metastatic disease may still treasure sexual intimacy. Assessment and management of sexual dysfunction is therefore necessary in all women with chronic illness or past or present cancer.
Fraser, S.; Walters, J.
In Australia and Oregon, USA, legislation to permit statutory sanctioned physician-assisted dying was enacted. However, opponents, many of whom held strong religious views, were successful with repeal in Australia. Similar opposition in Oregon was formidable, but ultimately lost in a 60-40% vote reaffirming physician-assisted dying. This paper examines the human dilemma which arises when technological advances in end-of-life medicine conflict with traditional and religious sanctity-of-life values. Society places high value on personal autonomy, particularly in the United States. We compare the potential for inherent contradictions and arbitrary decisions where patient autonomy is either permitted or forbidden. The broader implications for human experience resulting from new legislation in both Australia and Oregon are discussed. We conclude that allowing autonomy for the terminally ill, within circumscribed options, results in fewer ethical contradictions and greater preservation of dignity. Key Words: Physician-assisted suicide • voluntary euthanasia • patient autonomy • religious belief PMID:10786323
Reeve, Joanne; Lloyd-Williams, Mari; Payne, Sheila; Dowrick, Christopher
Biographical accounts of illness offer useful insights into the social and adaptive processes of living with chronic illness. Yet there are concerns that the underlying theoretical assumptions of a reflexive self seeking to maintain meaning may not reflect the lived experience of individuals. A narrative emphasis may neglect the importance of emotional/felt experiences; while an analytical focus on disruptive processes may not adequately reflect the totality of actual events. In this study, we explored how well biographical theory supports understanding of individual lived experience. Narratives from 19 individuals identified from General Practice lists with a terminal diagnosis of cancer were analysed using the holistic-form approach described by Lieblich. Participants described an ongoing process of living their life, 'managing' disruptive events and maintaining an overall sense of well-being (narrative form = biographical flow). For a minority, continuity was lost when people's capacity to continue living their everyday lives was overwhelmed (narrative form = fracture). The identified emphasis was on individual creative capacity in the face of terminal illness, highlighting the importance of embodied experience in understanding outcome and need. Maintaining continuity was draining: exhaustion precipitated fracture and thus need for external help to restore continuity. By focusing on feelings associated with overall narrative form, rather than individual disruptive events, we highlight the context in which disruptive events are experienced, and individual perceptions of their relative importance. We conclude that combining narrative and emotion offers new insights into the value of understanding of biographical accounts of illness in the context of individual creative capacity. We discuss the possibilities for new approaches to clinical assessment and management of need.
The medical approach as summarized by Leibowitz--"We must treat the person, not just the disease"--highlights the importance of treating the sick person and not only the illness' pathology. This approach calls for healing not only the physical side, but also--and mainly--the mental aspect of the patient. One of the goals of this article is to turn physicians' attention towards the compassion necessary in treating a person with a severe or chronic illness, or a person who is dying--precisely because sometimes there is no medical cure for the physical state of such a patient. Therefore, physicians' attention does need to be directed to providing emotional assistance to such a patient. Sometimes, the emotional strength the patient draws from the medical team that is treating him can change his view of, and approach to, the illness, and can enable his body to muster the emotional strength necessary to deal with his situation. Buddhism's approach enables the sick patient to experience his illness in a different way, by making peace with one's situation and, sometimes, even viewing the situation differently--viewing the illness as a type of renewal. Buddhism, therefore, enables a sick person to choose a different point of view when his energy is exhausted and he loses hope, providing quality of life to patients. In such a situation, a sick person finds emotional strength in the knowledge that the end of his life is actually a renewal somewhere else. The limited life expectancy of the terminally ill patient demands that he be able to spend his time with minimal concerns and worries, and does not leave much time for treating the emotional side--the patient's fear. In light of this fact, the patient's ability to look ahead and grasp at hope is the most important issue. As much as possible, this is accomplished in an atmosphere of acceptance and with the absence, or reduction, of fear. The freedom to decide for oneself how to behave, according to one's own approach, is what
Chatterji, Pinka; Joo, Heesoo; Lahiri, Kajal
We examine the education gradient in diabetes, hypertension, and high cholesterol. We take into account diagnosed as well as undiagnosed cases and use methods accounting for the possibility of unmeasured factors that are correlated with education and drive both the likelihood of having illness and the propensity to be diagnosed. Data come from the…
In our work with families that struggle with a chronic illness, we have relied on three ideas. First, we regard illness as a relationally traumatizing experience, not just for the person with the illness, but for other members of the family as well. We use the phrase "relational trauma" because of its effects on members of a wider system who also show signs of physical stress, isolation, and helplessness (Sheinberg & Fraenkel, 2000). Our second concern is how the conversation that leads to new stories is expanded through the development of voice and the use of writing. Looking at language, we are particularly attentive to the social prevalence of negative metaphors that surround and engulf the ill person and her family: dependence, poor genes, repressed personalities, weak constitutions, et cetera (Sontag, 1984). These negative metaphors, or outside voices, join with the inner voices of the ill person and result in a silence that disconnects people at a time when connections must be relied on and above question. Our third emphasis is on the use of writing as the means to create new voices, metaphors, and multiple descriptions that can reinvigorate the conversations silenced by the illness. Once the family's voices are reconstituted through writing, the emotions that have been displaced by the illness are restored to their conversation. I have included new research from JAMA detailing the treatment of patients with chronic illness through their use of writing.
Howard, Lisa M; Ceci, Christine
To address the growing costs associated with chronic illness care, many countries, both developed and developing, identify increased patient self-management or self-care as a focus of healthcare reform. Health coaching, an implementation strategy to support the shift to self-management, encourages patients to make lifestyle changes to improve the management of chronic illness. This practice differs from traditional models of health education because of the interactional dynamics between nurse and patient, and an orientation to care that ostensibly centres and empowers patients. The theoretical underpinnings of coaching reflect these differences, however in its application, the practices arranged around health coaching for chronic illness self-management reveal the social regulation and professional management of everyday life. This becomes especially problematic in contexts defined by economic constraint and government withdrawal from activities related to the 'care' of citizens. In this paper, we trace the development of health coaching as part of nursing practice and consider the implications of this practice as an emerging element of chronic illness self-management. Our purpose is to highlight health coaching as an approach intended to support patients with chronic illness and at the same time, problematize the tensions contained in (and by) this practice.
A great deal has been written about mothers and their relationships with their ill children. Fathers, however, have been relatively excluded from the research, as they have been from many pediatrician-mother-child interactions. Although it has been noted that some fathers tend to withdraw from the family, in fact very little is known about the impact of childhood illness on their lives. In general, studies of mothers, fathers, siblings, marriage, and families emphasize psychopathology and other psychosocial problems. Yet, there is a growing awareness in the social sciences that we have much to learn from the capacity to adjust. How is it that some families of chronically ill children survive so well? This question has not been addressed. Most studies focus on individual constituents of the family. Minuchin and others have taught us about aberrant family systems that sometimes develop around chronically ill children. Such systems are characterized by high cohesion and conformity, and the absence of apparent friction. How frequently do such systems develop? How can they be prevented? Finally, understanding the impact of chronic childhood illness on families is a difficult task. Parents have reasons for obscuring the impact, and particularly their distress, from the view of their pediatrician. Physicians are often uncertain how much understanding they ought to offer. Careful attention to the parent-pediatrician relationship is essential to a thorough understanding of the impact of childhood illness on the family.
Thara, R.; Padmavati, R.; Kumar, Shuba; Srinivasan, Latha
The family is a major source of support for the mentally ill in India. Although Indian families show tremendous resilience in caring for their ill relatives, they experience a lot of physical and emotional distress. The burden assessment schedule (BAS) aims to assess both objective and subjective burden experienced by the primary care givers of chronic mentally ill patients. Stepwise ethnographic exploration has been used in the development of this 40 item instrument. Reliability exercises have been carried out throughout the development of this schedule. Criterion validity has been established by comparing with another standardized instrument to assess burden, which has been developed in India. PMID:21494438
Bullenkamp, Jens; Voges, Burkhard
Outpatients with chronic mental illness living in therapeutic residential facilities in Mannheim, Germany (N=110) responded to an opinion poll to determine their voting preferences for the 2002 federal election to the Bundestag. The poll found that the outpatients were significantly more likely than the general population in Mannheim to prefer left-wing parties (78 percent compared with 56 percent). This finding is in contrast to earlier reports; however, it seems to better reflect common beliefs about the political preferences of this population. In conclusion, persons with chronic mental illness seem to prefer political parties that they believe will best serve their perceived specific interests.
Dossey, Barbara M
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.
Foster, H; Fitzgerald, J
We focus on the role of the general paediatrician in promoting the importance of good dental health for all children and in particular those children "at risk". We present preventive measures, evidence based where available, that may improve dental care and promote the role of paediatric dental services in the multidisciplinary management of chronic disease. PMID:15970611
Sirota, Alan D.; And Others
Followed eight male smokers with chronic pulmonary or cardiac disease through a smoking cessation program of gradual nicotine withdrawal, self-management, and relapse prevention. At one year, half remained abstinent, while relapsers smoked substantially less than before treatment. Reductions in carbon monoxide and thiocyanate levels were…
Wood, Felicity Juliette
Terminally ill prison inmates have a right to all aspects of health care including palliative care provision. However, there are numerous difficulties in providing palliative care to high-security prisoners in the UK. Local community hospices may be reluctant to admit terminally ill prisoners and therefore initiatives must be established to provide appropriate palliative care within the prison itself. Dying prisoners need companionship and to be shown respect and compassion to avoid feelings of loneliness and hopelessness. Inmate volunteers can provide an invaluable source of support and friendship for the terminally ill prisoner, helping to improve quality of life.
McCandless, N J; Conner, F P
While sexism and ageism in the health care system have been systematically documented, nowhere is the treatment of aging women more androcentric than in the care for the terminally ill. In fact, a terminally ill older woman is too often disadvantaged by a health care system which excludes her from decision-making and renders her powerless. In response, we propose a feminist approach to health care for terminally ill older women and argue that it is this approach which will not only put knowledge and power into the hands of women, but will change the fundamental ways in which women approach death.
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…
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…
Tidey, Jennifer W; Miller, Mollie E
The high prevalence of cigarette smoking and tobacco related morbidity and mortality in people with chronic mental illness is well documented. This review summarizes results from studies of smoking cessation treatments in people with schizophrenia, depression, anxiety disorders, and post-traumatic stress disorder. It also summarizes experimental studies aimed at identifying biopsychosocial mechanisms that underlie the high smoking rates seen in people with these disorders. Research indicates that smokers with chronic mental illness can quit with standard cessation approaches with minimal effects on psychiatric symptoms. Although some studies have noted high relapse rates, longer maintenance on pharmacotherapy reduces rates of relapse without untoward effects on psychiatric symptoms. Similar biopsychosocial mechanisms are thought to be involved in the initiation and persistence of smoking in patients with different disorders. An appreciation of these common factors may aid the development of novel tobacco treatments for people with chronic mental illness. Novel nicotine and tobacco products such as electronic cigarettes and very low nicotine content cigarettes may also be used to improve smoking cessation rates in people with chronic mental illness.
Describes psychological techniques, such as distraction and hypnotic imaginative involvement techniques, which have been found effective among chronically ill children and their parents in reducing anxiety and distress, and increasing the ability to cope with taxing medical procedures. Cases from research conducted in Vancouver, British Columbia…
Hamlet, Helen S.; Gergar, Patricia G.; Schaefer, Barbara A.
To investigate the current practices of schools and school counselors working with students with chronic illness and the protocols for providing these services, the authors conducted a mixed design, grounded theory study, with an eye toward pinpointing any trends or patterns in service provision. They identified a collaborative, developmental,…
Alexander, Matthew; Waxman, Dael; White, Patricia
Cinemeducation refers to the use of movies or movie clips to educate learners about the psychosocial aspects of health care. This paper describes the use of a clip from the movie, "What's Eating Gilbert Grape?" to teach medical students about chronic illness. The clip is used to set up a case study based on the lead character, Gilbert…
Barraclough, Camille; Machek, Greg
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…
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…
Koekkoek, Bauke; van Tilburg, Willem
This case report offers a different perspective on a patient with a long-term non-psychotic psychiatric disorder that was difficult to specify. The patient, a man in his 50s, was unable to profit from outpatient treatment and became increasingly dependent on mental healthcare - which could not be understood based on his history and psychiatric symptoms alone. By separating symptoms from illness behaviour, the negative course of this patient's treatment is analysed. Focusing on ineffective chronic illness behaviour by the patient, and mutual ineffective treatment behaviour by the clinicians, it becomes clear that basic requirements of effective treatment were unmet. By making a proper diagnosis, clarifying expectations and offering a suitable therapy, ineffective illness behaviour was diminished and this 'difficult' case became much easier for both patient and clinicians. The illness behaviour framework offers a useful, systematic tool to analyse difficulties between patients and clinicians beyond psychiatric symptoms or explanations.
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
Pledger, Carolyn Brastow
Examines Kubler-Ross' five stages of grief (denial, anger, bargaining, depression, acceptance) as they are experienced not by terminally ill persons, but by 20 criminal offenders and their families during incarceration. Concludes that shock of arrest and incarceration stimulates reactions similar to those of persons coping with terminal diagnosis.…
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.…
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…
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…
Weinert, Clarann; Cudney, Shirley; Hill, Wade G
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.
Dehkordi, Leila Mardanian; Babashahi, Monireh; Irajpour, Alireza
Background: Decision-making about patients with critical condition transfer from Intensive Care Unit to the general wards be delegated to their families. The aim of the study was explaining the experiences of family caregiver's about care of chronic critically ill patient. Methods: This study was conducted with a qualitative content analysis using unstructured interview. Participants were selected purposively from May 2014 to May 2015 and data collection continued until data saturation. Analysis was based on conventional content analysis. Results: Participants’ experiences classified into three main categories as following: nonprofessional care, enhancing factors of care, and inhibiting factors of care. Conclusions: Finding of the current study showed different aspects of care. Care of chronic critically ill patients is a long-term process that affected by different factors. It seems that the exploration of caregivers needs and planning supportive interventions based on their needs improve the quality of care. PMID:28028426
Maslow, Gary R; Hill, Sherika N
AIM: To review empirical evidence on character development among youth with chronic illnesses. METHODS: A systematic literature review was conducted using PubMed and PSYCHINFO from inception until November 2013 to find quantitative studies that measured character strengths among youth with chronic illnesses. Inclusion criteria were limited to English language studies examining constructs of character development among adolescents or young adults aged 13-24 years with a childhood-onset chronic medical condition. A librarian at Duke University Medical Center Library assisted with the development of the mesh search term. Two researchers independently reviewed relevant titles (n = 549), then abstracts (n = 45), and finally manuscripts (n = 3). RESULTS: There is a lack of empirical research on character development and childhood-onset chronic medical conditions. Three studies were identified that used different measures of character based on moral themes. One study examined moral reasoning among deaf adolescents using Kohlberg’s Moral Judgement Instrument; another, investigated moral values of adolescent cancer survivors with the Values In Action Classification of Strengths. A third study evaluated moral behavior among young adult survivors of burn injury utilizing the Tennessee Self-Concept, 2nd edition. The studies observed that youth with chronic conditions reasoned at less advanced stages and had a lower moral self-concept compared to referent populations, but that they did differ on character virtues and strengths when matched with healthy peers for age, sex, and race/ethnicity. Yet, generalizations could not be drawn regarding character development of youth with chronic medical conditions because the studies were too divergent from each other and biased from study design limitations. CONCLUSION: Future empirical studies should learn from the strengths and weaknesses of the existing literature on character development among youth with chronic medical conditions
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
Witten, Tarynn M
In this study, the experiences and needs of a sample of 1,963 current, global, English-speaking, transgender-identified adults responding to the Transgender MetLife Survey (TMLS) as related to a number of later-life and end-of-life (EOL) preparations and concerns were examined. EOL concerns are integrated with concerns and challenges around chronic illness and disability. Overall, this population was significantly ill-prepared for the major legalities and events that occur in the later to EOL time periods. The population was found to harbor significant fears around the future. Drawing on the author's decades of survey research in transgender aging and case data along with current scientific and online literature, illustrative quotations and case examples are provided.
Young, Sam; Speare, Rick; Berger, Lee; Skerratt, Lee F
Terminal changes in frogs infected with the amphibian fungal pathogen Batrachochytrium dendrobatidis (Bd) include epidermal degeneration leading to inhibited epidermal electrolyte transport, systemic electrolyte disturbances, and asystolic cardiac arrest. There are few reports of successful treatment of chytridiomycosis and none that include curing amphibians with severe disease. Three terminally ill green tree frogs (Litoria caerulea) with heavy Bd infections were cured using a combination of continuous shallow immersion in 20 mg/L chloramphenicol solution for 14 days, parenteral isotonic electrolyte fluid therapy for 6 days, and increased ambient temperature to 28 degrees C for 14 days. All terminally ill frogs recovered rapidly to normal activity levels and appetite within 5 days of commencing treatment. In contrast, five untreated terminally ill L. caerulea with heavy Bd infections died within 24-48 hr of becoming moribund. Subclinical infections in 15 experimentally infected L. caerulea were cured within 28 days by continuous shallow immersion in 20 mg/L chloramphenicol solution without adverse effects. This is the first known report of a clinical treatment protocol for curing terminally ill Bd-infected frogs.
Schools today are faced with increasing numbers of students with chronic illness. Medical advances, which improve health and prolong life, and increased incidence levels among some illnesses have led to this increase. Children with a chronic illness are more likely to encounter academic, social and emotional difficulties. The challenge facing…
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…
Molu, Nesibe Gunay; Ozkan, Birgul; Icel, Sema
Nowadays, mental illnesses are gradually increasing and so does chronic psychiatric patients. As a result of this increase, chronic psychiatric disorders lead the burden of patients and their families. To reduce the burden of mental illnesses on individuals and their families, treatment and care are given including psychosocial, physiological and medical support and social services. To begin with, home care enables both the patient and his or her family to stay at their own houses and not to be bothered with residents or long-term, institutional-based nursing homes. In addition, the home care providers deliver services to the patient’s at their own house. The other advantages of taking care at home is that it eases financial issues in terms of reducing the cost, reduces the patient’s symptoms and improve the individual’s quality of life (QoL). In addition to these, home care also minimizes the burden on outpatient services and provides help for the patient and the family in order to solve their problems and give support. Home care services help patients to get their freedom back and enhance the quality of their lives. Thus, it is necessary to procure and implement these services and supply both the patient and his or her family a high-quality life. Sources of data/ study selection: Literature review was done by using the keywords “home care, patient with chronic mental illness, quality of life, home care nursing” from the sources including PsychINFO, PsychARTICLES, MEDLINE, PubMED, EBSCOHOST and The COCHRANE LIBRARY in the time period of 2005- 2015. PMID:27182272
Liu, Leslie S.; Huh, Jina; Neogi, Tina; Inkpen, Kori; Pratt, Wanda
Health video blogs (vlogs) allow individuals with chronic illnesses to share their stories, experiences, and knowledge with the general public. Furthermore, health vlogs help in creating a connection between the vlogger and the viewers. In this work, we present a qualitative study examining the various methods that health vloggers use to establish a connection with their viewers. We found that vloggers used genres to express specific messages to their viewers while using the uniqueness of video to establish a deeper connection with their viewers. Health vloggers also explicitly sought interaction with their viewers. Based on these results, we present design implications to help facilitate and build sustainable communities for vloggers. PMID:24634895
Smith, Catherine Arnott; Haque, Saira N
This paper reports an analysis and comparison of the electronic and paper medical records of 5 clinically complex persons with spina bifida, who were seen as in- and outpatients at a small Northeastern urban hospital. The combination of chronic illness, multiple medical and allied health specialties, and longer lifespan in this population ensures both a quantitative volume and qualitative complexity of medical event documentation. This ensures a rich field for research into the content and the nature of the fragmented data presently locked in the paper record.
Walden, Elizabeth L
An exploration of the challenges facing lesbians with chronic conditions and their coping strategies was investigated by examining the experiences of participants who were clients of a volunteer organization serving chronically ill lesbians. This article reports the results associated with those challenges, with its ultimate goal being and to assess the effectiveness of current services. Using the participant observation method, as employed by O'Toole (2000), the analysis was based on multiple data sources and 10 years experience within the volunteer organization, including 3 years in direct client support. A qualitative method served as the primary focus for the study. The quantitative method preceded the qualitative method and provided limited supporting data. The total number of participants included all past and current clients, but the number participating in each data source varied. Qualitative sources included archival structured interviews (n = 69), taped interviews (n = 5-6), and extensive comments written in response to the quantitative surveys (n = 14). The quantitative measures (n = 14) included the researcher-developed Chronic Conditions Challenges Checklist (C4) and the Short Form of the McGill Pain Questionnaire ([SF-MPQ]; Melzack, 1998). A content analysis of all data sources found a number of challenges that met the criteria of being identified in at least two data sources and across multiple participants. Challenges included those related to the disease process (i.e., pain, fatigue, and decreases in mobility) to impacts of the condition (financial security, ability to participate, support from family of origin and independence, loneliness, and issues related to mental health). Challenges were discussed in terms of those that are similar to and different from other women suffering from chronic illness, as well as their relevance to related literature.
Namasivayam, Pathmavathy; Orb, Angélica; O'Connor, Margaret
Caring for families of the terminally ill is an important aspect of nursing care as nurses are considered the main health care professionals who are closest to families. This paper describes the experience of seven registered nurses caring for families of the terminally ill in Western Australia. Five of the nurses worked in an acute area at a public hospital; the other two nurses worked at long-term care settings at a private hospital. Descriptive phenomenology as described by Husserl (1970) was used to describe and explore nurses' lived experience. Data were collected through in depth interviews and analysed using the Colaizzi method. Four major themes are reported in this paper: 1) walking a journey together; 2) dealing with intense emotions; 3) working as a team; and 4) balancing the dimension of care. Nurses' lived experiences of caring for families of terminally ill patients revealed that nurses are confronted by families' emotions and at the same time needed to manage their own emotions. The findings further indicated that nurses play a significant role in caring for families of the terminally ill. The family's fear of losing their loved ones often resulted in conflicts, which required extra time from nurses. Moreover, some of the major barriers identified were time constraints and excessive workloads. Finally, some implications of the findings for registered nurses are discussed.
Kurt, Layla J.; Piazza, Nick J.
In 2005, the American Counseling Association (ACA) introduced a new ethical standard for counselors working with clients with terminal illness who are considering hastened death options. The authors' purpose is to inform counselors of the Death With Dignity Act and explore relevant ethical guidelines in the "ACA Code of Ethics" (ACA, 2005).
Sauer, Michael Paul
The purpose of this dialogical qualitative research study was to gain insight into the process of storytelling with adults diagnosed with terminal illness as a way of making meaning of their experiences and lives. The study was informed by the conceptual frameworks of story, storytelling, and story listening which are grounded in the theory of…
Meyers, Allan R.; And Others
A review of 85 patients who received home care for terminal illness showed that a small proportion of patients use a relatively high volume of both in-patient and home care services. Data suggest that there are two dimensions of service utilization: a medical dimension and a social dimension. (Author/RC)
Rice, Craig J.; Gourley, Junean Krajewski
This article discusses students with terminal illnesses and the challenges teachers face in dealing with the issue of death. Classroom strategies for dealing with death are described and include using children's literature that explores death, using deaths of pets as teachable moments, and using children's films. (Contains references.) (CR)
Itzhaky, Haya; Lipschitz-Elhawi, Rachel
This article focuses on supervision of social workers who feel despair and hopelessness in treating terminally ill patients. The emotional difficulties that may lead to these feelings are discussed. A special model of supervision that relates to hope as a strategy to help social workers cope with such difficulties is presented. The model suggests…
Olokor, Christiana O.
The purpose of this study was to analyze the attitudes of terminally ill patients toward death and dying. Four hospitals in Nigeria were randomly selected: University College Hospital, Ibadan; University of Benin Teaching Hospital, Benin City; the Lagos University Teaching Hospital, Lagos; and Igbinedion Specialist Hospital, Okada, Benin City.…
Withholding and withdrawing artificial nutrition and hydration from terminally ill patients poses many ethical challenges. The literature provides little information about the Islamic beliefs, attitudes, and laws related to these challenges. Artificial nutrition and hydration may be futile and reduce quality of life. They can also harm the terminally ill patient because of complications such as aspiration pneumonia, dyspnea, nausea, diarrhea, and hypervolemia. From the perspective of Islam, rules governing the care of terminally ill patients are derived from the principle that injury and harm should be prevented or avoided. The hastening of death by the withdrawal of food and drink is forbidden, but Islamic law permits the withdrawal of futile, death-delaying treatment, including life support. Nutritional support is considered basic care and not medical treatment, and there is an obligation to provide nutrition and hydration for the dying person unless it shortens life, causes more harm than benefit, or is contrary to an advance directive that is consistent with Islamic law. The decision about withholding or withdrawing artificial nutrition and hydration from the terminally ill Muslim patient is made with informed consent, considering the clinical context of minimizing harm to the patient, with input from the patient, family members, health care providers, and religious scholars.
Chen, Yung-Chi; Fish, Marian C.
This study examined how maternal chronic illnesses may affect children's academic achievement through parental involvement. A total of 189 mothers diagnosed with chronic illnesses, such as multiple sclerosis, diabetes, cancer, HIV/AIDS, chronic pain, asthma, myelodysplasic syndrome, and fibromyalgia, and with a child in middle school or high…
Undurraga F, Juan P; González, Matías; Calderón, Jorge
During the last decades we have witnessed a progressive aging of the general population and a higher prevalence of chronic disease. This fact along with the appearance of infectious diseases like AIDS, anticipates that more patients will benefit from comprehensive palliative care. The objective of this article is to propose a simple, integral and effective method of emotional support to the patient, family and health team in palliative care (PC). PC receives little attention in medical schools, despite the great impact it has on standard health practice and quality of life of patients and their families. Our proposed method, counselling, has been empirically studied and proven to be an effective therapeutic tool in promoting behavioural changes that favour the outcome of many conditions. We believe that it facilitates PC practice, promoting direct conversation and identifying issues that can potentially cause suffering to the patients. It is based on the patient's autonomy, considers his multiple dimensions, uses and stimulates patient's own resources and coping strategies, to improve quality of life
Borge, Christine Råheim; Moum, Torbjørn; Puline Lein, Martha; Austegard, Elise Lynn; Wahl, Astrid Klopstad
Illness perception (IP) concerns how patients evaluate living with a disease. To get a broader understanding of IP in patients with chronic obstructive pulmonary disease (COPD), we investigated whether breathlessness is an important precursor of IP and whether IP in its turn is related to mental health, physical health and global quality of life (QOL). One hundred and fifty-four patients with COPD participated in a cross-sectional survey. Participants underwent pulmonary function testing, provided socio-demographic and clinical information, and completed the following standardized instruments: Brief Illness Perception Questionnaire, Respiratory Quality of Life Questionnaire, Short-Form 12 Health Survey and the Quality of Life Scale. Multiple regression analyses were performed. A high IP score indicates that a patient believes that his/her illness represents a threat. Participants with a high score on the IP dimensions consequences, identity, concern and emotional representation, experienced more breathlessness. High scores on the IP dimensions consequences, identity and concern were associated with impaired physical health and high scores on the IP dimensions consequences, identity and emotional representation were associated with impaired mental health. Impaired global QOL was associated with high scores on the IP dimensions consequences, identity, concern, coherence and emotional representation. The strength of the associations between breathlessness and physical/mental health and global QOL decreased when certain dimensions of IP were included as predictors, indicating that IP to some extent acts as a mediating factor. These findings may have practical implications of patient counselling by helping COPD patients to cope with their disease by restructuring their personal models of illness.
Hoth, Karin F.; Wamboldt, Frederick S.; Bowler, Russell; Make, Barry; Holm, Kristen
Objective Patients’ beliefs about the causes of their illness have been associated with emotional adjustment and behavioral outcomes in several medical conditions; however, few studies have examined illness attributions among patients with COPD. In the current study, patterns of patients’ causal attributions for COPD were identified and examined in relation to health behaviors and symptoms. Method Three-hundred and ninety-four patients with COPD and ≥10 pack year history of smoking completed a self-report questionnaire that included the Illness Perception Questionnaire- Revised (IPQ-R). Results A factor analysis of the IPQ-R cause items using principal axis factoring yielded four individual items (i.e., smoking, heredity, pollution, and personal behavior) and one large factor that was primarily driven by psychological attributions. Ninety-three percent of patients agreed or strongly agreed that smoking was a cause of their COPD. Higher scores on the large IPQ-R factor were associated with reduced quality of life (r=.25, p<.001) and symptoms of anxiety (r=.33, p<.001) and depression (r=.31, p<.001), indicating that patients who attributed their COPD to psychological factors were more likely to have poorer emotional adjustment and quality of life. Conclusions Our finding of one large factor with several stand-alone items is in contrast with previous research that has derived a multi-factor structure for the cause items of the IPQ-R in other chronic illness populations. This difference may be due to the importance of smoking, environmental exposures, and heredity in the development of COPD. Future research should expand upon these specific attributions in COPD‥ PMID:21511077
O'Brien, Mary R; Clark, David
Stories about illness have proven invaluable in helping health professionals understand illness experiences. Such narratives have traditionally been solicited by researchers through interviews and the collection of personal writings, including diaries. These approaches are, however, researcher driven; the impetus for the creation of the story comes from the researcher and not the narrator. In recent years there has been exponential growth in illness narratives created by individuals, of their own volition, and made available for others to read in print or as Internet accounts. We sought to determine whether it was possible to identify such material for use as research data to explore the subject of living with the terminal illness amyotrophic lateral sclerosis/motor neuron disease--the contention being that these accounts are narrator driven and therefore focus on issues of greatest importance to the affected person. We encountered and sought to overcome a number of methodological and ethical challenges, which is our focus here.
Ross, Gerald H; Sternquist, Marie C
Background: The medical literature reports health hazards for law enforcement personnel from repeated exposure to methamphetamine and related chemical compounds. Most effects appear transitory, but some Utah police officers with employment-related methamphetamine exposures developed chronic symptoms, some leading to disability. This report is of an uncontrolled retrospective medical chart evaluation of symptomatic officers treated with a sauna detoxification protocol designed to reduce the chronic symptoms and improve the quality of life. Methods: Sixty-nine officers consecutively entering the Utah Meth Cops Project were assessed before and after a treatment program involving gradual exercise, comprehensive nutritional support and physical sauna therapy. Evaluations included pre- and post-treatment scores of the Research and Development Corporation (RAND) 36-item Short Form Health Survey (SF-36) in comparison with RAND population norms, pre- and post-treatment symptom score intensities, neurotoxicity scores, Mini-Mental Status Examination, presenting symptom frequencies and a structured evaluation of treatment program safety. Results: Statistically significant health improvements were seen in the SF-36 evaluations, symptom scores and neurotoxicity scores. The detoxification protocol was well tolerated, with a 92.8% completion rate. Conclusions: This investigation strongly suggests that utilizing sauna and nutritional therapy may alleviate chronic symptoms appearing after chemical exposures associated with methamphetamine-related law enforcement activities. This report also has relevance to addressing the apparent ill effects of other complex chemical exposures. In view of the positive clinical outcomes in this group, broader investigation of this sauna-based treatment regimen appears warranted. PMID:22089658
Lindley, Lisa C
Within the Patient Protection and Affordable Care Act of 2010 or health care reform, is a relatively small provision about concurrent curative care that significantly affects terminally ill children. Effective on March 23, 2010, terminally ill children, who are enrolled in a Medicaid or state Children's Health Insurance Plans (CHIP) hospice benefit, may concurrently receive curative care related to their terminal health condition. The purpose of this article was to conduct a policy analysis of the concurrent curative care legislation by examining the intended goals of the policy to improve access to care and enhance quality of end of life care for terminally ill children. In addition, the policy analysis explored the political feasibility of implementing concurrent curative care at the state-level. Based on this policy analysis, the federal policy of concurrent curative care for children would generally achieve its intended goals. However, important policy omissions focus attention on the need for further federal end of life care legislation for children. These findings have implications nurses.
Clayton, Josephine M; Hancock, Karen; Parker, Sharon; Butow, Phyllis N; Walder, Sharon; Carrick, Sue; Currow, David; Ghersi, Davina; Glare, Paul; Hagerty, Rebecca; Olver, Ian N; Tattersall, Martin H N
The aim of this systematic review was to examine studies that have investigated sustaining hope during prognostic and end-of-life issues discussions with terminally ill patients and their families. A comprehensive search of databases (MEDLINE, EMBASE, CINAHL, PsychINFO, Cochrane Central Register of Controlled Trials) and handsearching, from 1985 to June 2006, identified 27 studies. This review suggests that the issues surrounding hope in this context are complex. Despite the lack of unanimity among researchers regarding the definition of hope, findings suggest that balancing hope with honesty is an important skill for health professionals (HPs). Many patients seem to be able to maintain a sense of hope despite acknowledging the terminal nature of their illness. Patients and caregivers mostly preferred honest and accurate information, provided with empathy and understanding. Many different sources of hope were identified in this context in broad aspects of life, not just the medical situation. HPs need to recognize this spectrum of hope and appreciate that patients may simultaneously hope for 'cure' while acknowledging the terminal nature of their illness. HPs may help patients to cope with their terminal prognosis by exploring and fostering realistic forms of hope that are meaningful for the particular patient and their family.
HUH, JINA; LIU, LESLIE S.; NEOGI, TINA; INKPEN, KORI; PRATT, WANDA
Studies have shown positive impact of video blogs (vlogs) on patient education. However, we know little on how patient-initiated vlogs shape the relationships among vloggers and viewers. We qualitatively analyzed 72 vlogs on YouTube by users diagnosed with HIV, diabetes, or cancer and 1,274 comments posted to the vlogs to understand viewers’ perspectives on the vlogs. We found that the unique video medium allowed intense and enriched personal and contextual disclosure to the viewers, leading to strong community-building activities and social support among vloggers and commenters, both informationally and emotionally. Furthermore, the unique communication structure of the vlogs allowed ad hoc small groups to form, which showed different group behavior than typical text-based social media, such as online communities. We provide implications to the Health Care Industry (HCI) community on how future technologies for health vlogs could be designed to further support chronic illness management. PMID:26146474
Royal, Kenneth D; Elahi, Fereshte
Research conducted with the terminally ill population in relation to death anxiety is rare and mostly outdated. The purpose of this study was to evaluate the psychometric properties of the widely used Death Anxiety Scale (DAS) on a sample of terminal cancer patients.Additionally, validation studies of the DAS have exclusively used traditional statistical methods for analysis. The current study utilized an item response theory technique (IRT), namely the Rasch Rating Scale model for data analysis. The methodology employed may be useful for other researchers conducting validation studies from an IRT perspective.
Lascaratos, J; Poulakou-Rebelakou, E; Marketos, S
Our research on the texts of the Byzantine historians and chroniclers revealed an apparently curious phenomenon, namely, the abandonment of terminally ill emperors by their physicians when the latter realised that they could not offer any further treatment. This attitude tallies with the mentality of the ancient Greek physicians, who even in Hippocratic times thought the treatment and care of the terminally ill to be a challenge to nature and hubris to the gods. Nevertheless, it is a very curious attitude in the light of the concepts of the Christian Byzantine physicians who, according to the doctrines of the Christian religion, should have been imbued with the spirit of philanthropy and love for their fellowmen. The meticulous analysis of three examples of abandonment of Byzantine emperors, and especially that of Alexius I Comnenus, by their physicians reveals that this custom, following ancient pagan ethics, in those times took on a ritualised form without any significant or real content. PMID:10390682
Fischer, D.J.; Epstein, J.B.; Yao, Y.; Wilkie, D.J.
Purpose Oral conditions are established complications in terminally-ill cancer patients. Yet despite significant morbidity, the characteristics and impact of oral conditions in these patients are poorly documented. The study objective was to characterize oral conditions in terminally-ill cancer patients to determine the presence, severity, and the functional and social impact of these oral conditions. Methods This was an observational clinical study including terminally-ill cancer patients (2.5–3 week life expectancy). Data were obtained via the Oral Problems Scale (OPS) that measures the presence of subjective xerostomia, orofacial pain, taste change, and the functional/social impact of oral conditions and a demographic questionnaire. A standardized oral examination was used to assess objective salivary hypofunction, fungal infection, mucosal erythema, and ulceration. Regression analysis and t test investigated the associations between measures. Results Of 104 participants, most were ≥50 years of age, female, and high-school educated; 45% were African American, 43% Caucasian, and 37% married. Oral conditions frequencies were: salivary hypofunction (98%), mucosal erythema (50%), ulceration (20%), fungal infection (36%), and other oral problems (46%). Xerostomia, taste change, and orofacial pain all had significant functional impact; p<.001, p=.042 and p<.001, respectively. Orofacial pain also had a significant social impact (p<.001). Patients with oral ulcerations had significantly more orofacial pain with a social impact than patients without ulcers (p=.003). Erythema was significantly associated with fungal infection and with mucosal ulceration (p<.001). Conclusions Oral conditions significantly affect functional and social activities in terminally-ill cancer patients. Identification and management of oral conditions in these patients should therefore be an important clinical consideration. PMID:24232310
Thomas, Joseph; Iyer, Neeraj N; Collins, William B
Patient beliefs about their illness can motivate behaviors consistent with good disease management. Perceived high-quality chronic care would be expected to increase likelihood of having such beliefs. Associations between perceived quality of chronic care and illness representations, and associations between patient centeredness and illness representations were assessed among persons with diabetes. A mail survey of diabetic patients visiting a multispecialty physician network serving urban and suburban populations in a large midwestern city was conducted. The Patient Assessment of Chronic Illness Care-5A questionnaire was used to assess perceived chronic care quality and patient centeredness. The Brief Illness Perception Questionnaire was used to assess illness representations. Of 500 mailed surveys, 89 completed surveys were returned. The sample consisted mostly of retirees (61%), Whites (81%), and women (60%). Higher perceived chronic care quality was associated with better disease understanding of diabetes (0.24, p = .05). Patients reporting higher patient centeredness (or lower patient-centeredness scores) indicated better disease understanding (-0.26, p = .04) and those reporting higher patient centeredness (or lower patient-centeredness scores) perceived less impact of illness (0.29, p = .02). Chronic care quality as defined in the Chronic Care Model and consistency of chronic care with patient expectations (patient centeredness) was associated with illness representations favorable for good self-care management.
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…
Turk, Dennis C.; And Others
All chronic illnesses represent assaults on multiple areas of functioning, not just the body. To examine the association between painful chronic illnesses and depression from a cognitive-behavioral perspective, 100 patients of the Pain Management Program at the West Haven, Connecticut Veterans Administration Hospital (78% males) completed a…
Cloutier, Paula F.; Manion, Ian G.; Walker, Jan Gordon; Johnson, Susan M.
Couples with chronically ill children are particularly at risk for experiencing marital distress. The study presented here is a 2-year follow-up of a randomized control trial that assessed the efficacy of Emotionally Focused Therapy (EFT) in decreasing marital distress in a sample of couples with a chronically ill child. Thirteen couples with…
Haynes, Deborah C.; Haynes, George W.; Weinert, Clarann
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…
Reljic, Tea; Kumar, Ambuj; Klocksieben, Farina A; Djulbegovic, Benjamin
Objective To assess the efficacy of active treatment targeted at underlying disease (TTD)/potentially curative treatments versus palliative care (PC) in improving overall survival (OS) in terminally ill patients. Design We performed a systematic review and meta-analysis of randomised controlled trials (RCT). Methodological quality of included RCTs was assessed using the Cochrane risk of bias tool. Data sources Medline and Cochrane databases were searched, with no language restriction, from inception to 19 October 2016. Eligibility criteria for selecting studies Any RCT assessing the efficacy of any active TTD versus PC in adult patients with terminal illness with a prognosis of <6-month survival were eligible for inclusion. Results Initial search identified 8252 citations of which 10 RCTs (15 comparisons, 1549 patients) met inclusion criteria. All RCTs included patients with cancer. OS was reported in 7 RCTs (8 comparisons, 1158 patients). The pooled results showed no statistically significant difference in OS between TTD and PC (HR (95% CI) 0.85 (0.71 to 1.02)). The heterogeneity between pooled studies was high (I2=62.1%). Overall rates of adverse events were higher in the TTD arm. Conclusions Our systematic review of available RCTs in patients with terminal illness due to cancer shows that TTD compared with PC did not demonstrably impact OS and is associated with increased toxicity. The results provide assurance to physicians, patients and family that the patients' survival will not be compromised by referral to hospice with focus on PC. PMID:28062473
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.
O'Connor, Kathleen; Vizcaino, Maricarmen; Ibarra, Jorge M.; Balcazar, Hector; Perez, Eduardo; Flores, Luis; Anders, Robert L.
The aims of this article are: 1) to examine the associations between health provider-diagnosed depression and multimorbidity, the condition of suffering from more than two chronic illnesses; 2) to assess the unique contribution of chronic illness in the prediction of depression; and 3) to suggest practice changes that would address risk of depression among individuals with chronic illnesses. Data collected in a cross-sectional community health study among adult Mexicans (n= 274) living in a low income neighborhood (colonia) in Ciudad Juárez, Chihuahua, Mexico, were examined. We tested the hypotheses that individuals who reported suffering chronic illnesses would also report higher rates of depression than healthy individuals; and having that two or more chronic illnesses further increased the risk of depression. PMID:26640817
Distelberg, Brian; Williams-Reade, Jackie; Tapanes, Daniel; Montgomery, Susanne; Pandit, Mayuri
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.
Walton, Jo Ann; Lazzaro-Salazar, Mariana
It is widely recognized that chronic illnesses pose significant challenges for health care systems around the world. In response, most governments have set health policies in order to manage (or better, reduce) demand and improve the health of their populations. A discourse analysis of four policy documents that shape these strategies in New Zealand reveals that the policies construct the chronically ill as "others," that is, as deviant or different from the "normal" population. The discourse further serves to blame the chronically ill both for being sick, and for placing a serious financial burden on society. We identify problems that arise from this discourse. They relate to (a) the fact that chronic illnesses are so prevalent, (b) the fallacy of categorizing all chronic illnesses as the same,
O'Connor, Kathleen; Vizcaino, Maricarmen; Ibarra, Jorge M; Balcazar, Hector; Perez, Eduardo; Flores, Luis; Anders, Robert L
The aims of this article are: 1) to examine the associations between health provider-diagnosed depression and multimorbidity, the condition of suffering from more than two chronic illnesses; 2) to assess the unique contribution of chronic illness in the prediction of depression; and 3) to suggest practice changes that would address risk of depression among individuals with chronic illnesses. Data collected in a cross-sectional community health study among adult Mexicans (n= 274) living in a low income neighborhood (colonia) in Ciudad Juárez, Chihuahua, Mexico, were examined. We tested the hypotheses that individuals who reported suffering chronic illnesses would also report higher rates of depression than healthy individuals; and having that two or more chronic illnesses further increased the risk of depression.
Existential Psychological Theory was employed as a conceptual and theoretical foundation for the use of hypnotically facilitated therapy in the management of intractable pain, nausea, and vomiting in 3 end-stage, terminally ill cancer patients. The existential principles of death anxiety, existential isolation, and existential meaninglessness were addressed with a combination of classic and Ericksonian techniques. The intractable nature of the presenting physical symptoms was conceptualized as a possible manifestation of the impact of the terminal prognosis. Direct hypnotic suggestions for the management of pain, nausea and vomiting were avoided. It was hypothesized that, as the existential conflicts associated with the patients' terminal status resolved, the physiological symptoms would become responsive to medication. After 6 sessions grounded in the principles of Existential Psychotherapy, the intractable status of the physical symptomatology remitted, and the patients responded to medical management. This paper addresses the usefulness of Existential Psychotherapy in hypnotic interventions for mediating somatic and psychosomatic symptomatology.
Craddock, Travis J. A.; Fritsch, Paul; Rice, Mark A.; del Rosario, Ryan M.; Miller, Diane B.; Fletcher, Mary Ann; Klimas, Nancy G.; Broderick, Gordon
A key component in the body's stress response, the hypothalamic-pituitary-adrenal (HPA) axis orchestrates changes across a broad range of major biological systems. Its dysfunction has been associated with numerous chronic diseases including Gulf War Illness (GWI) and chronic fatigue syndrome (CFS). Though tightly coupled with other components of endocrine and immune function, few models of HPA function account for these interactions. Here we extend conventional models of HPA function by including feed-forward and feedback interaction with sex hormone regulation and immune response. We use this multi-axis model to explore the role of homeostatic regulation in perpetuating chronic conditions, specifically GWI and CFS. An important obstacle in building these models across regulatory systems remains the scarcity of detailed human in vivo kinetic data as its collection can present significant health risks to subjects. We circumvented this using a discrete logic representation based solely on literature of physiological and biochemical connectivity to provide a qualitative description of system behavior. This connectivity model linked molecular variables across the HPA axis, hypothalamic-pituitary-gonadal (HPG) axis in men and women, as well as a simple immune network. Inclusion of these interactions produced multiple alternate homeostatic states and sexually dimorphic responses. Experimental data for endocrine-immune markers measured in male GWI subjects showed the greatest alignment with predictions of a naturally occurring alternate steady state presenting with hypercortisolism, low testosterone and a shift towards a Th1 immune response. In female CFS subjects, expression of these markers aligned with an alternate homeostatic state displaying hypocortisolism, high estradiol, and a shift towards an anti-inflammatory Th2 activation. These results support a role for homeostatic drive in perpetuating dysfunctional cortisol levels through persistent interaction with the
Nichols, Joyce; Riegel, Barbara
This pilot study explored acceptance of death in the chronically ill. It was hypothesized that chronic illness would be a positive predictor of premature acceptance of death. Acceptance of death, if premature, may lead to untimely acquiescence to death, making people less likely to seek medical care and practice preventive health behaviors. A correlational design was used to explore the relationship between chronic illness and acceptance of death, controlling for age. Data were collected on death acceptance using the revised version of the Life Attitude Profile. Number of chronic illnesses was obtained from self-report and a review of the medical record in a sample of 76 hospitalized individuals. The number of chronic illnesses was significantly and positively associated with death acceptance, but age was not. The model explained only 5.2% of the variance in death acceptance, however. Chronic illness is clearly only one of many factors stimulating individuals to ponder death earlier than expected. Nurses need to be alert to the possibility that individuals with multiple chronic illnesses may be prematurely acquiescing to death. If acquiescence causes failure to participate in care, it could potentially exacerbate chronic conditions unnecessarily.
Patterson, J. E.
The pre-travel medical evaluation of elderly patients and patients with chronic illness requires special assessment and advice. Screening and special precautions are reviewed for traveling patients with respiratory disease, cardiac disease, sinusitis, diabetes mellitus, HIV infection, and other chronic medical conditions. Current guidelines for empiric therapy and prophylaxis of travelers' diarrhea are reviewed, with emphasis on concerns in geriatric or chronically ill travelers. Special considerations such as potential drug-drug interactions and insurance coverage are also discussed. PMID:1290273
Onishi, Hideki; Kawanishi, Chiaki; Onose, Masanari; Yamada, Tomoki; Saito, Hideyuki; Yoshida, Akira; Noda, Kazumasa
Although Wernicke encephalopathy has been reported in the oncological literature, only one terminally ill cancer patient with Wernicke encephalopathy has been reported. Wernicke encephalopathy, a potentially reversible condition, may be unrecognized in terminally ill cancer patients. In this communication, we report three terminally ill cancer patients who developed Wernicke encephalopathy. Early recognition and subsequent treatment resulted in successful palliation of delirium. Two of the three patients did not show the classical triad of Wernicke encephalopathy. Common clinical symptoms were delirium and poor nutritional status. Intravenous thiamine administration dramatically improved the symptoms of delirium in all three patients. In terminally ill cancer patients, clinicians must remain aware of the possibility of Wernicke encephalopathy when patients with a poor nutritional status present with unexplained delirium. Early intervention may correct the symptoms and prevent irreversible brain damage and the quality of life for the patient may improve.
Felton, Barbara J.; Revenson, Tracey A.
Evaluated the emotional consequences of using wish-fulfilling fantasy (palliative) and information-seeking (instrumental) coping strategies among patients (N=151) faced with chronic illness. Results showed information-seeking to have positive effects on adjustment and wish-fulfilling fantasy to have deleterious consequences. (LLL)
Roberto, Marisa; Treistman, Steven N.; Pietrzykowski, Andrzej Z.; Weiner, Jeff; Galindo, Rafael; Mameli, Manuel; Valenzuela, Fernando; Zhu, Ping Jun; Lovinger, David; Zhang, Tao A.; Hendricson, Adam H.; Morrisett, Richard; Siggins, George Robert
This article presents the proceedings of a symposium entitled “The Tipsy Terminal: Presynaptic Effects of Ethanol” (held at the annual meeting of the Research Society on Alcoholism, in Santa Barbara, CA, June 27, 2005). The objective of this symposium was to focus on a cellular site of ethanol action underrepresented in the alcohol literature, but quickly becoming a “hot” topic. The chairs of the session were Marisa Roberto and George Robert Siggins. Our speakers were chosen on the basis of the diverse electrophysiological and other methods used to discern the effects of acute and chronic ethanol on presynaptic terminals and on the basis of significant insights that their data provide for understanding ethanol actions on neurons in general, as mechanisms underlying problematic behavioral effects of alcohol. The 5 presenters drew from their recent studies examining the effects of acute and chronic ethanol using a range of sophisticated methods from electrophysiological analysis of paired-pulse facilitation and spontaneous and miniature synaptic currents (Drs. Weiner, Valenzuela, Zhu, and Morrisett), to direct recording of ion channel activity and peptide release from acutely isolated synaptic terminals (Dr. Treistman), to direct microscopic observation of vesicular release (Dr. Morrisett). They showed that ethanol administration could both increase and decrease the probability of release of different transmitters from synaptic terminals. The effects of ethanol on synaptic terminals could often be correlated with important behavioral or developmental actions of alcohol. These and other novel findings suggest that future analyses of synaptic effects of ethanol should attempt to ascertain, in multiple brain regions, the role of presynaptic terminals, relevant presynaptic receptors and signal transduction linkages, exocytotic mechanisms, and their involvement in alcohol’s behavioral actions. Such studies could lead to new treatment strategies for alcohol
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…
Theeke, Laurie A.; Mallow, Jennifer
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
Lee, Andrea M; Poole, Gary
The authors' aim in this study was to describe the chronic illness experience and its relationship to the concept to finding meaning. They conducted interviews using a narrative approach with 15 adults experiencing various chronic illnesses and analyzed narrative data using a combination of holistic-content and categorical-content approaches. The three major categories were the context of the chronic illness experience, personal reactions, and coping efforts. These categories were best interpreted in terms of a transactional model. The authors categorized finding meaning under cognitive coping strategies and described it as a strategy that was part of a larger coping repertoire.
Morita, Tatsuya; Murata, Hisayuki; Hirai, Kei; Tamura, Keiko; Kataoka, Jun; Ohnishi, Hideki; Akizuki, Nobuya; Kurihara, Yukie; Akechi, Tatsuo; Uchitomi, Yosuke
Recent empirical studies revealed that fostering patients' perception of meaning in their life is an essential task for palliative care clinicians. However, few studies have reported the effects of training programs for nurses specifically aimed at improving skills to relieve the meaninglessness of terminally ill cancer patients, and we have had no specific measurement instruments. The primary aims of this study were 1) to validate measurement tools to quantify nurses' self-reported practice and attitudes toward caring for terminally ill cancer patients feeling meaninglessness and 2) to explore the effects of the five-hour educational workshop focusing on meaninglessness on nurses' self-reported practice, attitudes toward caring for such patients, confidence, burnout, death anxiety, and meaning of life. A quasi-experimental pre-post questionnaire survey was performed on 147 nurses. The questionnaire was distributed before the intervention workshop and one and six months after. The workshop consisted of lecture, role-play, and the exercise of assessment and care planning based on two vignette verbatim records. First, using the first questionnaire sample and an additional sample of 20 nurses for the test-retest examination, we validated a six-item Self-Reported Practice scale, and an eight-item Attitudes Toward Caring for Patients Feeling Meaninglessness scale with three subscales (Willingness to Help, Positive Appraisal, and Helplessness). The nurses also completed a scale to assess confidence in caring for terminally ill patients with meaninglessness, the Maslach Burnout Inventory, the Death Attitude Inventory, the Frommelt Attitudes Toward Care of the Dying scale, the Self-Reported Practice Score in General Communication, and the three pain-related items from the Palliative Care Quiz for Nursing. For the Self-Reported Practice scale and the subscales of the Attitudes Toward Caring for Patients Feeling Meaninglessness scale, the Cronbach's alpha coefficients were 0
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.
Johnson, Gerhard J.; Slater, Billie C. S.; Leis, Linda A.; Rector, Thomas S.; Bach, Ronald R.
Background More than twenty years following the end of the 1990–1991 Gulf War it is estimated that approximately 300,000 veterans of this conflict suffer from an unexplained chronic, multi-system disorder known as Gulf War Illness (GWI). The etiology of GWI may be exposure to chemical toxins, but it remains only partially defined, and its case definition is based only on symptoms. Objective criteria for the diagnosis of GWI are urgently needed for diagnosis and therapeutic research. Objective This study was designed to determine if blood biomarkers could provide objective criteria to assist diagnosis of GWI. Design A surveillance study of 85 Gulf War Veteran volunteers identified from the Department of Veterans Affairs Minnesota Gulf War registry was performed. All subjects were deployed to the Gulf War. Fifty seven subjects had GWI defined by CDC criteria, and 28 did not have symptomatic criteria for a diagnosis of GWI. Statistical analyses were performed on peripheral blood counts and assays of 61 plasma proteins using the Mann-Whitney rank sum test to compare biomarker distributions and stepwise logistic regression to formulate a diagnostic model. Results Lymphocyte, monocyte, neutrophil, and platelet counts were higher in GWI subjects. Six serum proteins associated with inflammation were significantly different in GWI subjects. A diagnostic model of three biomarkers—lymphocytes, monocytes, and C reactive protein—had a predicted probability of 90% (CI 76–90%) for diagnosing GWI when the probability of having GWI was above 70%. Significance The results of the current study indicate that inflammation is a component of the pathobiology of GWI. Analysis of the data resulted in a model utilizing three readily measurable biomarkers that appears to significantly augment the symptom-based case definition of GWI. These new observations are highly relevant to the diagnosis of GWI, and to therapeutic trials. PMID:27352030
... gastrointestinal illness in Persian Gulf Veterans was caused by the presence of bacteria in the intestines and whether eradication of these bacteria reduces symptoms of chronic diarrhea. Affected Public:...
... gastrointestinal illness in Persian Gulf Veterans was caused by ] the presence of bacteria in the intestines and whether eradication of these bacteria reduces symptoms of chronic diarrhea. An agency may not conduct...
Shapiro, Miriam C; Henderson, Carrie M; Hutton, Nancy; Boss, Renee D
Chronically critically ill pediatric patients represent an emerging population in NICUs and PICUs. Chronic critical illness has been recognized and defined in the adult population, but the same attention has not been systematically applied to pediatrics. This article reviews what is currently known about pediatric chronic critical illness, highlighting the unique aspects of chronic critical illness in infants and children, including specific considerations of prognosis, outcomes, and decision-making. We propose a definition that incorporates NICU versus PICU stays, recurrent ICU admissions, dependence on life-sustaining technology, multiorgan dysfunction, underlying medical complexity, and the developmental implications of congenital versus acquired conditions. We propose a research agenda, highlighting existing knowledge gaps and targeting areas of improvement in clinical care, research, and policy.
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)
Lee, Youngkhill; McCormick, Bryan P.
Presents a sense-making process in defining health, particularly as related to people with chronic illness and disabilities, reviewing existing concepts of health, examining how people make sense of their disability and illness from an existential perspective, offering two concepts (life story and sense of coherence) relevant to this existential…
Katavic, Snježana Stanarevic; Tanackovic, Sanjica Faletar; Badurina, Boris
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…
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…
Checton, Maria G.; Magsamen-Conrad, Kate; Venetis, Maria K.; Greene, Kathryn
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…
Houman, Katie M.; Stapley, Janice C.
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,…
Darmann-Finck, Ingrid; Sahm, Martina
The article examines two concepts of counselling of patients by nurses that are popular in the German-speaking area with regard to their underlying scientific standpoint and ideals and their implications on counselling-process and -result. The authors determine that both concepts disregard the biographic construction processes which are so important for coping with and tackling chronic illness. The article concludes with a discussion of prospective use of biographic diagnostics in counselling of patients with chronic illness.
Aoun, Samar M.; Breen, Lauren J.; Howting, Denise
Context: The number of terminally ill people who live alone at home and without a caregiver is growing and exerting pressure on the stretched resources of home-based palliative care services. Objectives: We aimed to highlight the unmet support needs of terminally ill people who live alone at home and have no primary caregiver and identify specific models of care that have been used to address these gaps. Methods: We conducted a narrative review of empirical research published in peer-reviewed journals in English using a systematic approach, searching databases 2002–2013. This review identified 547 abstracts as being potentially relevant. Of these, 95 were retrieved and assessed, with 37 studies finally reviewed. Results: Majority of the studies highlighted the reduced likelihood of this group to be cared for and die at home and the experiences of more psychosocial distress and more hospital admissions than people with a primary caregiver. Few studies reported on the development of models of care but showed that the challenges faced by this group may be mitigated by interventions tailored to meet their specific needs. Conclusion: This is the first review to highlight the growing challenges facing community palliative care services in supporting the increasing number of people living alone who require care. There is a need for more studies to examine the effectiveness of informal support networks and suitable models of care and to provide directions that will inform service planning for this growing and challenging group. PMID:25750828
Morita, T; Tsunoda, J; Inoue, S; Chihara, S
To determine an underlying factorial structure of existential distress in Japanese terminally ill cancer patients, a principal components analysis was performed on 162 Japanese hospice inpatients. Existential distress commonly identified was dependency (39%), meaninglessness in present life (37%), hopelessness (37%), burden on others (34%), loss of social role functioning (29%), and feeling emotionally irrelevant (28%). By a factor analysis, three primary components accounted for 66% of the variance. 'Dependency' and 'loss of social role functioning' loaded highly on the first factor, which was interpreted as 'loss of autonomy'. 'Burden on others' and 'feeling emotionally irrelevant' loaded highly on the second component interpreted as 'lowered self-esteem', while 'hopelessness' loaded highly on the third factor. On the other hand, 'meaninglessness in present life' loaded equally on all three components, and was significantly associated with other distress. In conclusion, existential suffering of Japanese terminally ill cancer patients has three principal components: loss of autonomy, lowered self-esteem, and hopelessness. It is also suggested that meaninglessness in present life would be an underlying theme in patients' spirituality.
Sasaki, Tsubasa; Kawagoe, Izumi
Since the launch of pure oxycodone injections in May 2012, it has been possible to use oxycodone without opioid rotation. Although an extremely important step showing progress, very few studies regarding the use of pure oxycodone injections have been performed. In this study, we evaluated the safety and efficacy of pure oxycodone injections in 31 terminally ill cancer patients receiving home care. The difficulty in oral oxycodone intake was the main reason for changing to pure oxycodone injections. The mean administered period of subcutaneous pure oxycodone was 5.6 ± 6.7 days. One out of 5 patients receiving pure oxycodone injections complained of worsening sleepiness. However, other symptoms improved. In addition, in cases wherein pure oxycodone injection was the initiating opioid, 1 out of 6 patients showed no improvement of respiratory discomfort, while other symptoms improved. It was difficult to evaluate more patients because of the short period for administration. Although 5 patients experienced skin problems, they were successfully managed by changing the injection site. Of these 5 patients, 2 patients had sensitive skin, with a previous history of alcohol rash. In conclusion, our study suggests that pure oxycodone injections are beneficial over oral oxycodone treatment for terminally ill cancer patients. However, further evaluation of skin problems associated with pure oxycodone injections is required by performing larger studies.
Gil-Herrera, Eleazar; Yalcin, Ali; Tsalatsanis, Athanasios; Barnes, Laura E; Djulbegovic, Benjamin
This paper presents a Rough Set Theory (RST) based classification model to identify hospice candidates within a group of terminally ill patients. Hospice care considerations are particularly valuable for terminally ill patients since they enable patients and their families to initiate end-of-life discussions and choose the most desired management strategy for the remainder of their lives. Unlike traditional data mining methodologies, our approach seeks to identify subgroups of patients possessing common characteristics that distinguish them from other subgroups in the dataset. Thus, heterogeneity in the data set is captured before the classification model is built. Object related reducts are used to obtain the minimum set of attributes that describe each subgroup existing in the dataset. As a result, a collection of decision rules is derived for classifying new patients based on the subgroup to which they belong. Results show improvements in the classification accuracy compared to a traditional RST methodology, in which patient diversity is not considered. We envision our work as a part of a comprehensive decision support system designed to facilitate end-of-life care decisions. Retrospective data from 9105 patients is used to demonstrate the design and implementation details of the classification model.
Aoun, Samar M; Breen, Lauren J; Howting, Denise
Context: The number of terminally ill people who live alone at home and without a caregiver is growing and exerting pressure on the stretched resources of home-based palliative care services. Objectives: We aimed to highlight the unmet support needs of terminally ill people who live alone at home and have no primary caregiver and identify specific models of care that have been used to address these gaps. Methods: We conducted a narrative review of empirical research published in peer-reviewed journals in English using a systematic approach, searching databases 2002-2013. This review identified 547 abstracts as being potentially relevant. Of these, 95 were retrieved and assessed, with 37 studies finally reviewed. Results: Majority of the studies highlighted the reduced likelihood of this group to be cared for and die at home and the experiences of more psychosocial distress and more hospital admissions than people with a primary caregiver. Few studies reported on the development of models of care but showed that the challenges faced by this group may be mitigated by interventions tailored to meet their specific needs. Conclusion: This is the first review to highlight the growing challenges facing community palliative care services in supporting the increasing number of people living alone who require care. There is a need for more studies to examine the effectiveness of informal support networks and suitable models of care and to provide directions that will inform service planning for this growing and challenging group.
Kidd, Elizabeth; Brown, Abigail; McManimen, Stephanie; Jason, Leonard A.; Newton, Julia L.; Strand, Elin Bolle
Chronic fatigue syndrome (CFS) is a debilitating illness, but it is unclear if patient age and illness duration might affect symptoms and functioning of patients. In the current study, participants were categorized into four groups based upon age (under or over age 55) and illness duration (more or less than 10 years). The groups were compared on functioning and symptoms. Findings indicated that those who were older with a longer illness duration had significantly higher levels of mental health functioning than those who were younger with a shorter or longer illness duration and the older group with a shorter illness duration. The results suggest that older patients with an illness duration of over 10 years have significantly higher levels of mental health functioning than the three other groups. For symptoms, the younger/longer illness duration group had significantly worse immune and autonomic domains than the older/longer illness group. In addition, the younger patients with a longer illness duration displayed greater autonomic and immune symptoms in comparison to the older group with a longer illness duration. These findings suggest that both age and illness duration need to be considered when trying to understand the influence of these factors on patients. PMID:27110826
Baumgartner, Lisa M.
Nearly half the U.S. population copes with a chronic disease or condition. A chronic disease is "one lasting three months or more that generally cannot be prevented by vaccines or cured by medication." Heart disease, cancer, diabetes, and obesity are the most common chronic diseases in developed countries. By 2030, it is estimated that…
Taylor, Valerie H; McIntyre, Roger S; Remington, Gary; Levitan, Robert D; Stonehocker, Brian; Sharma, Arya M
While differences in weight-gain potential exist, both between and within classes of psychiatry medications, most commonly used atypical antipsychotics, mood stabilizers, and antidepressants result in some degree of weight gain. This is not new information and it requires an understanding of the tolerability profiles of different treatments and their goodness of fit with specific patient phenotypes. However, this iatrogenic association represents only a piece of this obesity-mental illness dyad. The complex interplay between psychiatric illness and weight involves neurobiology, psychology, and sociological factors. Parsing the salient variables in people with mental illness is an urgent need insofar as mortality from physical health causes is the most common cause of premature mortality in people with chronic mental illness. Our review examines issues associated with common chronic mental illnesses that may underlie this association and warrant further study if we hope to clinically intervene to control this life-threatening comorbidity.
Duric, Vanja; Clayton, Sarah; Leong, Mai Lan; Yuan, Li-Lian
Neuropsychiatric symptoms and mental illness are commonly present in patients with chronic systemic diseases. Mood disorders, such as depression, are present in up to 50% of these patients, resulting in impaired physical recovery and more intricate treatment regimen. Stress associated with both physical and emotional aspects of systemic illness is thought to elicit detrimental effects to initiate comorbid mental disorders. However, clinical reports also indicate that the relationship between systemic and psychiatric illnesses is bidirectional, further increasing the complexity of the underlying pathophysiological processes. In this review, we discuss the recent evidence linking chronic stress and systemic illness, such as activation of the immune response system and release of common proinflammatory mediators. Altogether, discovery of new targets is needed for development of better treatments for stress-related psychiatric illnesses as well as improvement of mental health aspects of different systemic diseases. PMID:26977323
Dickinson, Annette R; Smythe, Elizabeth; Spence, Deb
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.
Phillips, Christopher J; Matyas, Gary R; Hansen, Christian J; Alving, Carl R; Smith, Tyler C; Ryan, Margaret A K
Since the end of the 1991 Gulf War, there have been reports of unexplained, multisymptom illnesses afflicting veterans who consistently report more symptoms than do nondeployed veterans. One of the many possible exposures suspected of causing chronic multisymptom illnesses Gulf War veterans is squalene, thought to be present in anthrax vaccine. We examined the relationship between squalene antibodies and chronic symptoms reported by Navy construction workers (Seabees), n=579. 30.2% were deployers, 7.4% were defined as ill, and 43.5% were positive for squalene antibodies. We found no association between squalene antibody status and chronic multisymptom illness (p=0.465). The etiology of Gulf War syndrome remains unknown, but should not include squalene antibody status.
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
Herts, Kate L.; Wallis, Elizabeth; Maslow, Gary
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…
Cretin, Shan; Shortell, Stephen M.; Keeler, Emmett B.
The authors' dual-purpose evaluation assesses the effectiveness of formal collaboratives in stimulating organizational changes to improve chronic illness care (the chronic care model or CCM). Intervention and comparison sites are compared before and after introduction of the CCM. Multiple data sources are used to measure the degree of…
Reinschmidt, Kerstin M.; Moreno, Francisco A.
Objective: To describe somatic and psychiatric symptoms reported by Hispanic primary care patients with and without depression and/or chronic medical illnesses. Method: Adult Hispanic patients (n = 104) in a Mobile Health Program in underserved southern Arizona participated in a survey conducted between September 2006 and February 2007 to obtain information about the somatic and psychiatric symptoms that they were experiencing. They were asked to rate the severity of their symptoms listed in the depression screen Personal Health Questionnaire-9 (PHQ-9), the Symptom Checklist-90-Revised (SCL-90-R), and 5 new symptoms described by patients in focus groups conducted in the first phase of the project. Patients were categorized as depressed if their PHQ-9 scores were 10 or above, and they were further categorized as having or not having chronic illnesses based on self-report. Analyses of variance were conducted for each SCL-90-R symptom dimension to compare across the 4 groups (group 1: not depressed and not medically ill; group 2: medically ill but not depressed; group 3: depressed but not medically ill; and group 4: depressed and medically ill). Results: Patients with chronic medical illnesses comorbid with depression were found to report significantly more somatic symptoms than those with only chronic medical illnesses or depression alone (P ≤ .001). They also reported significantly more psychopathology than patients with depression alone (P ≤ .05 or better). Conclusions: Patients with medical illnesses comorbid with depression are more likely to exhibit psychopathology than patients with medical illnesses or depression alone. PMID:20944771
Objective To compare the effectiveness with which insured and uninsured persons with chronic illnesses managed their health care. Design Recruited volunteers diagnosed with a variety of chronic illnesses who underwent 3 semistructured interviews in a 1-year period. Setting Volunteers were recruited through referrals, flyers, and face-to-face contacts from community health clinics, senior centers, acute care hospitals, and home care services in 2 urban counties in California between December 1997 and December 2000. Participants A total of 297 persons between the ages of 23 and 97 years (35% African American, 33% Latino, and 32% Filipino American), of whom 42 (14%) had no health insurance. Main outcome measures Qualitative analysis of interview data compared insured and uninsured respondents on a series of components of chronic illness management, including control over illness, frequency of health crises, procuring medication, use of medication, understanding of the illness, knowledge of self-care measures, and awareness of risk factors. Whether respondents were under the care of a regular physician was also assessed. Results Compared with insured respondents, uninsured respondents were much less effective at managing their illnesses. The uninsured had poorly controlled illnesses, frequent health crises, difficulty procuring medication, used medication incorrectly, demonstrated poor understanding of their illness, and displayed little knowledge of self-care measures or risk awareness. They rarely had a regular physician or attended a specific health clinic. Conclusions The findings suggest that not only did uninsured persons with chronic health conditions lack adequate health care, their illnesses were also poorly controlled. Inadequately educated about their health, uninsured persons lacked the information, insight, and tools that would have allowed them to manage their illnesses more effectively. PMID:11431394
Tsui, Emma K
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.
Parpa, Efi; Mystakidou, Kyriaki; Tsilika, Eleni; Sakkas, Pavlos; Patiraki, Elisabeth; Pistevou-Gombaki, Kyriaki; Galanos, Antonis; Vlahos, Lambros
The purpose of this article is to explore the attitudes of lay people and physicians regarding euthanasia and physician-assisted suicide in terminally ill cancer patients in Greece. The sample consisted of 141 physicians and 173 lay people. A survey questionnaire was used concerning issues such as euthanasia, physician-assisted suicide, and so forth. Many physicians (42.6%) and lay people (25.4%, P = .002) reported that in the case of a cardiac and/or respiratory arrest, there would not be an effort to revive a terminally ill cancer patient. Only 8.1% of lay people and 2.1% of physicians agreed on physician-assisted suicide (P = .023). Many of the respondents, especially physicians, supported sedation but not euthanasia or physician-assisted suicide. However, many of the respondents would prefer the legalization of a terminally ill patient's hastened death.
Waverijn, Geeke; Heijmans, Monique; Groenewegen, Peter P
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.
Noh, Hyunjin; Schroepfer, Tracy A
The underuse of hospice care by terminally ill African American elders suggests they are suffering when hospice care could offer quality end of life care. Guided by the Behavioral Model for Vulnerable Populations, this study sought understanding of structural barriers faced when seeking access to hospice care and reasons for using it when access is possible. Data was collected through interviews with 28 African American hospice patients. Themes from directed content analysis provide insights into strategies used to overcome access barriers posed by income, health insurance and administrative procedure, as well as the role religion, family, information and health beliefs played in using it. Distributing educational materials and addressing spiritual/religious concerns in choosing hospice care are key in promoting African Americans' use of hospice care.
Hamrell, Burt B
A finding in the autopsy of John Paul Jones, the American Revolutionary War naval hero, may explain his terminal illness. During his last 2 years, he had a persistent productive cough and dyspnea. Ten days before death, he developed rapidly progressive dependent edema and ascites. He died in France in 1792. His body, preserved in alcohol in a lead coffin, was, in 1905, removed to the United States. Glomerulonephritis was noted on an autopsy, performed in France, but there was no comment then or since about ventricular wall thickness being the same in both ventricles at 5-6 mm. Hypertrophy and dilatation with biventricular failure followed by tissue shrinkage during 113 years in alcohol could have resulted in these ventricular wall findings. Systemic hypertension and left ventricular failure are consistent with his respiratory symptoms complicated perhaps by pulmonary emboli, right ventricular failure with tricuspid regurgitation, peripheral congestion, and jaundice.
Montenegro-Torres, B F; Engelhardt, T; Thamer, M; Anderson, G
We conducted a survey of Fortune 100 companies to determine their response to the growing number of employees with chronic conditions. We found that although all companies cover some services that are particularly beneficial to persons with chronic conditions, gaps in coverage remain. We also found large variations in cost-sharing mechanisms, number of covered visits, and lifetime maximum benefit provisions, which are especially important to persons with chronic conditions. In general, for persons with chronic conditions the benefits offered by these Fortune 100 companies are superior to those offered by Medicare.
TITLE: Proposal for Development of EBM-CDSS (Evidence-based Clinical Decision Support System) to Aid Prognostication in Terminally Ill Patients...SUBTITLE Proposal for development of EBM-CDSS (Evidence-based Clinical Decision Support System) to aid prognostication in terminally ill patients 5a...to improve prognostication of the life expectancy of terminally ill patients to improve referral of patients to hospice. In addition, the EBM-CDSS
Chao, Co-Shi Chantal
The purpose of this study was to survey physicians attitudes toward DNR of terminally ill cancer patients in Taiwan. A total of 7626 structured questionnaires were sent by mail to physicians who were members of the Taiwan Society of Internal Medicine and the Surgical Association of Taiwan, and 1328 valid responses were received. The response rate was 17.6%. The instrument, a structured questionnaire, was composed of one scenario and six questions. A majority (77.6%) of the physicians under investigation would tell a terminally ill cancer patient or his family about the possibility of DNR and ask them to consider signing a consent form. Over one half of the physicians (58.4%) did not know whether the Medical Law in Taiwan permits natural death, and 96.1% of the subjects felt they would need legal protection for agreeing patient s autonomy to decide DNR. Unfortunately, 41.2% of the respondent admitted that they did not have a formal Informed Consent Form that could be used for DNR. Even of those who had such a form, only 27.4% had clear guidelines given by their institutions. Among 623 physicians whose institutions had an formal Informed Consent Form for DNR, 63.7% agreed that it was reasonably used. Surprisingly, 67.9% of the physicians had used Slow Codes. The findings of this study served as a solid base. The investigator and other colleagues used it to convince legislators to pass a Natural Death Act in Taiwan. Since some legislators disliked the term death and the main promotes were people engaged in hospice palliative care, the new law entitled Hospice Palliative Act was passed on May 23, 2000. The DNR order finally gained its legal base for medical practice. The limitation of this study was the low response rate. However, since the subjects, physicians, had a busy work load, this was still an acceptable response rate.
Rosenfeld, Barry; Pessin, Hayley; Marziliano, Allison; Jacobson, Coleen; Sorger, Brooke; Abbey, Jennifer; Olden, Megan; Brescia, Robert; Breitbart, William
Understanding why some terminally ill patients may seek a hastened death (a construct referred to as “desire for hastened death” or DHD) is critical to understanding how to optimize quality of life during an individual’s final weeks, months or even years of life. Although a number of predictor variables have emerged in past DHD research, there is a dearth of longitudinal research on how DHD changes over time and what factors might explain such changes. This study examined DHD over time in a sample of terminally ill cancer patients admitted to a palliative care hospital. A random sample of 128 patients who completed the Schedule of Attitudes toward Hastened Death (SAHD) at two time points approximately 2–4 weeks apart participated. Patients were categorized into one of four trajectories based on their SAHD scores at both time points: low (low DHD at T1 and T2), rising (low DHD at T1 and high DHD at T2), falling (high DHD at T1 and low DHD at T2) and high (high DHD at T1 and T2). Among patients who were low at T1, several variables distinguished between those who developed DHD and those who did not: physical symptom distress, depression symptom severity, hopelessness, spiritual well-being, baseline DHD, and a history of mental health treatment. However, these same medical and clinical variables did not distinguish between the falling and high trajectories. Overall, there appears to be a relatively high frequency of change in DHD, even in the last weeks of life. Interventions designed to target patients who are exhibiting subthreshold DHD and feelings of hopelessness may reduce the occurrence of DHD emerging in this population. PMID:24747154
Rosenfeld, Barry; Pessin, Hayley; Marziliano, Allison; Jacobson, Colleen; Sorger, Brooke; Abbey, Jennifer; Olden, Megan; Brescia, Robert; Breitbart, William
Understanding why some terminally ill patients may seek a hastened death (a construct referred to as "desire for hastened death" or DHD) is critical to understanding how to optimize quality of life during an individual's final weeks, months or even years of life. Although a number of predictor variables have emerged in past DHD research, there is a dearth of longitudinal research on how DHD changes over time and what factors might explain such changes. This study examined DHD over time in a sample of terminally ill cancer patients admitted to a palliative care hospital. A random sample of 128 patients completed the Schedule of Attitudes toward Hastened Death (SAHD) at two time points approximately 2-4 weeks apart participated. Patients were categorized into one of four trajectories based on their SAHD scores at both time points: low (low DHD at T1 and T2), rising (low DHD at T1 and high DHD at T2), falling (high DHD at T1 and low DHD at T2) and high (high DHD at T1 and T2). Among patients who were low at T1, several variables distinguished between those who developed DHD and those who did not: physical symptom distress, depression symptom severity, hopelessness, spiritual well-being, baseline DHD, and a history of mental health treatment. However, these same medical and clinical variables did not distinguish between the falling and high trajectories. Overall, there appears to be a relatively high frequency of change in DHD, even in the last weeks of life. Interventions designed to target patients who are exhibiting subthreshold DHD and feelings of hopelessness may reduce the occurrence of DHD emerging in this population.
Matsuo, Naoki; Yomiya, Kinomi
Steroids are commonly used for fatigue relief in terminally ill cancer patients. However, steroid-induced adverse effects including depression, myopathy, and hyperglycemia may contribute to fatigue. We report our experiences with aggravation of fatigue with steroid use in three cases. Case 1 was a 65-year-old man with advanced gastric cancer. He was started on betamethasone (2 mg/d) for fatigue, but the fatigue worsened due to steroid-induced depression. Discontinuation of steroids and initiation of an antidepressant ameliorated the fatigue. Case 2 was a 68-year-old man with advanced lung cancer. He complained of fatigue. Betamethasone (1 mg/d) was started and alleviated the fatigue. However, when the betamethasone dose was increased to 2 mg/d, the fatigue, with muscle weakness and myalgia, worsened due to steroid-induced myopathy. We therefore switched from betamethasone (2 mg/d) to prednisolone (10 mg /d). The fatigue resolved and the patient returned to his previous condition. Case 3 was a 73-year-old man with recurrent bile duct cancer. He also had diabetes mellitus. He developed fatigue, anorexia and fever. We started betamethasone (1.5 mg/d) for these symptoms, but the fatigue and anorexia worsened due to steroid-induced hyperglycemia. Blood glucose rose to 532 mg/dL. Therefore, insulin therapy was started, and the dose of betamethasone was reduced to 0.5 mg/d. His glucose level decreased to less than 320 mg/dL and he recovered from the fatigue while achieving moderate oral intake. In conclusion, the possibility of steroid-induced secondary fatigue in terminally ill cancer patients should be taken into consideration.
Victoria, Kitty; Patel, Sarita
Background: Studies have shown that over 50% of end-of-life discussions take place for the first time in the hospital and that terminally ill patients often have unrealistic views regarding the possible scope of treatment. The Palliative Care information Act (PCIA) was passed in an attempt to address the lack of access for terminally ill patients to palliative care services. A multi-database systematic review was performed on published studies from 2010 to present, and there were none found measuring the effectiveness of the PCIA. Objectives: We aimed to study the effect of the PCIA on access to palliative care services. Methods: We conducted a retrospective chart review of all terminally ill patients who died at Kingsbrook Jewish Medical Center from January 2010 to August 2013 in relation to passing of the PCIA. Results: Prelaw (prior to the law passing), 12.3% of the terminal patients received palliative care consults, 25% during the transition period (time between passing of law and when it came into effect) and 37.7% postlaw (after coming into effect) (P < 0.001). Conclusions: Legislation can have a significant effect on terminally ill patient's access to palliative care services and can change the culture of a hospital to be more pro-palliative for the appropriate populations. PMID:27803564
McDaniel, Susan H., Ed.
Regardless of whether a patient's health-care provider works from a traditional biomedical or a new biopsychosocial model, therapists and counselors need to work with patients and their families challenged by the onset of a serious illness. This book addresses this need and outlines the five goals of medical family therapy: (1) help the family…
Sancho, Jesus; Servera, Emilio; Jara-Palomares, Luis; Barrot, Emilia; Sanchez-Oro-Gómez, Raquel; Gómez de Terreros, F Javier; Martín-Vicente, M Jesús; Utrabo, Isabel; Núñez, M Belen; Binimelis, Alicia; Sala, Ernest; Zamora, Enrique; Segrelles, Gonzalo; Ortega-Gonzalez, Angel; Masa, Fernando
Chronically critically ill patients often undergo prolonged mechanical ventilation. The role of noninvasive ventilation (NIV) during weaning of these patients remains unclear. The aim of this study was to determine the value of NIV and whether a parameter can predict the need for NIV in chronically critically ill patients during the weaning process. We conducted a prospective study that included chronically critically ill patients admitted to Spanish respiratory care units. The weaning method used consisted of progressive periods of spontaneous breathing trials. Patients were transferred to NIV when it proved impossible to increase the duration of spontaneous breathing trials beyond 18 h. 231 chronically critically ill patients were included in the study. 198 (85.71%) patients achieved weaning success (mean weaning time 25.45±16.71 days), of whom 40 (21.4%) needed NIV during the weaning process. The variable which predicted the need for NIV was arterial carbon dioxide tension at respiratory care unit admission (OR 1.08 (95% CI 1.01-1.15), p=0.013), with a cut-off point of 45.5 mmHg (sensitivity 0.76, specificity 0.67, positive predictive value 0.76, negative predictive value 0.97). NIV is a useful tool during weaning in chronically critically ill patients. Hypercapnia despite mechanical ventilation at respiratory care unit admission is the main predictor of the need for NIV during weaning.
Servera, Emilio; Barrot, Emilia; Sanchez-Oro-Gómez, Raquel; Gómez de Terreros, F. Javier; Martín-Vicente, M. Jesús; Utrabo, Isabel; Núñez, M. Belen; Binimelis, Alicia; Sala, Ernest; Zamora, Enrique; Segrelles, Gonzalo; Ortega-Gonzalez, Angel; Masa, Fernando
Chronically critically ill patients often undergo prolonged mechanical ventilation. The role of noninvasive ventilation (NIV) during weaning of these patients remains unclear. The aim of this study was to determine the value of NIV and whether a parameter can predict the need for NIV in chronically critically ill patients during the weaning process. We conducted a prospective study that included chronically critically ill patients admitted to Spanish respiratory care units. The weaning method used consisted of progressive periods of spontaneous breathing trials. Patients were transferred to NIV when it proved impossible to increase the duration of spontaneous breathing trials beyond 18 h. 231 chronically critically ill patients were included in the study. 198 (85.71%) patients achieved weaning success (mean weaning time 25.45±16.71 days), of whom 40 (21.4%) needed NIV during the weaning process. The variable which predicted the need for NIV was arterial carbon dioxide tension at respiratory care unit admission (OR 1.08 (95% CI 1.01–1.15), p=0.013), with a cut-off point of 45.5 mmHg (sensitivity 0.76, specificity 0.67, positive predictive value 0.76, negative predictive value 0.97). NIV is a useful tool during weaning in chronically critically ill patients. Hypercapnia despite mechanical ventilation at respiratory care unit admission is the main predictor of the need for NIV during weaning. PMID:28053973
Ngoepe, Mpho; Choonara, Yahya E.; Tyagi, Charu; Tomar, Lomas Kumar; du Toit, Lisa C.; Kumar, Pradeep; Ndesendo, Valence M. K.; Pillay, Viness
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
Imes, Suzanne A; Clance, Pauline Rose; Gailis, Andra T; Atkeson, Ellen
In the literature on chronic or life-threatening illness, there is an overriding emphasis on clients' psychological coping styles and how they relate to psychological functioning. By contrast, in our approach, we look at the subjective mind/body experiences that clients have of their illness and how their lives are impacted by their illness. As psychotherapists, we address their existential distress, pain, body experience, thoughts, and feelings, as well as their efforts to cope or find meaning in their illness. We summarize Gestalt/Existential therapy for chronic illness, illustrate the approach with three case-vignettes, and stress the importance of attending to each client's unique responses to illness.
The Multiple Family Groups (MFGs) approach for patients with a chronic medical illness and their families is a structured psychoeducational program that unfolds in six weekly 90-minute sessions. In the MFGs, patients and family members explore new ways to balance illness and nonillness priorities in family life (Steinglass, 1998; Steinglass, 2000 Cuadernos de Terapia Familiar, 44-45, 11; Steinglass, Ostroff, & Steinglass, 2011 Family Process, 50, 393).
Cocosila, Mihail; Archer, Norm
Objective 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. Materials and methods 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. Results 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). Discussion 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. Conclusions 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. PMID:25056975
Aji, Budi; Yamamoto, Shelby Suzanne; Sauerborn, Rainer
Background Little research has focused on the economic hardship among the insured with severe illnesses and high treatment costs, in particular, the consequence of poorer insurance coverage for high-cost illnesses. Therefore, we presented the case for identifying the experiences of insured patients with severe chronic and acute illnesses. This study identified a qualitative understanding of the economic impact of severe chronic and acute illnesses and household strategies to deal with high treatment costs. Design Interviews were conducted with 19 insured households of three different health insurance programs with a family member that had been hospitalized for severe chronic or acute illnesses in either Banyumas or Margono Sukarjo hospitals in Banyumas, Central Java, Indonesia. A thematic analysis was applied to guide the interpretation of the data. Results Insured households with a family member that had been hospitalized for severe chronic and acute illnesses were greatly affected by the high treatment costs. Four major issues emerged from this qualitative study: insured patients are still burdened with high out-of-pocket payments, households adopt various strategies to cope with the high cost of treatments, households experience financial hardships, and positive and negative perceptions of the insured regarding their health insurance coverage for acute and chronic illnesses. Conclusions Askes and Jamsostek patients faced financial burdens from high cost sharing for hospital amenities, non-covered drugs, and treatments and other indirect costs. Meanwhile, Jamkesmas beneficiaries faced no financial burden for related medical services but were rather burdened with indirect costs for the carers. Households relied on internal resources to cover hospital bills as the first strategy, which included the mobilization of savings, sale of assets, and borrowing of money. External support was tapped secondarily and included financial support from extended family members
Becker, Gay; Gates, Rahima Jan; Newsom, Edwina
Little is known about the self-care practices of chronically ill African Americans or how lack of access to health care affects self-care. Results from a qualitative interview study of 167 African Americans who had one or more chronic illnesses found that self-care practices were culturally based, and the insured reported more extensive programs of self-care. Those who had some form of health insurance much more frequently reported the influence of physicians and health education programs in self-care regimens than did those who were uninsured. It is concluded that the cultural components of self-care have been underemphasized, and further, that the potential to maximize chronic illness management through self-care strategies is not realized for those who lack access to health care. PMID:15569953
Winthrop, Zachary A.; Salman, Rabia; Majeed, Salman
Alagille syndrome is a rare multisystem disorder affecting the liver, heart, vertebrae, eyes, and face. Alagille syndrome shares multiple phenotypic variants of other congenital or chronic childhood illnesses such as DiGeorge syndrome, Down syndrome, spina bifida, type 1 diabetes mellitus, and cystic fibrosis. All of these chronic illnesses have well-established links to psychiatric conditions. There are few community resources for Alagille patients, as it is an extremely rare condition. Despite the overlap with other chronic childhood illnesses, the psychiatric manifestations of Alagille syndrome have not been previously discussed in literature. The current study is a case report of a twelve-year-old female hospitalized in our pediatric psychiatric hospital for suicidal ideation with intent and plan. The patient had major depressive disorder, anxiety, other specified feeding and eating disorder, and attention-deficit/hyperactive disorder. PMID:28018696
Guion, Kimberly; Mrug, Sylvie
Previous literature has demonstrated the separate contributions of parental attributions and adolescent attributions to psychosocial adjustment of adolescents with chronic illness. However, it is unknown whether parental attributions affect adolescents' mental health directly or indirectly by influencing the youths' attributional style. This study evaluated the direct and indirect (through adolescent attributions) effects of parental attributions on internalizing and externalizing problems of adolescents with chronic illness. Adolescents (N = 128; M = 14.7 years) diagnosed with cystic fibrosis or diabetes and their caregivers completed measures of attributional style and adolescent adjustment. Parents' optimistic attributions were associated with fewer adolescent internalizing and externalizing problems. These effects were partly mediated by adolescent attributions. These results suggest that targeting both adolescent and parent attributions may be important for improving adolescents' adjustment to a chronic illness.
Anderson, J M; Blue, C; Lau, A
This inquiry into the lives of women living with a chronic illness brings to attention the complex processes that frame the existential meanings of illness. Data from immigrant Chinese and Anglo-Canadian women with diabetes are used to show that illness is constructed in a complex social, political and economic nexus. When the circumstances of women's lives are examined, styles of managing illness that could be attributed to ethnicity, become recognizable as pragmatic ways of dealing with the harsh realities of material existence. It is argued that the trends toward individualizing social problems, and shifting the responsibility for caretaking from the state to the individual, obfuscate the social context of illness, and exclude the socially disadvantaged from adequate health care.
Armstrong, F. Daniel
Successful treatment of many childhood diseases once considered terminal has resulted in the emergence of long-term effects of the disease or consequences of treatment that were previously unrecognized. Many of these long-term effects involve the central nervous system (CNS) and are developmental in the way that they emerge over time. Because we…
Duba, Jill D.; Magenta, Mary
End-of-life care is continuously becoming an issue of paramount importance given an increase in medical advances, the aging of the population, and the movement toward contributing toward a quality of life among terminally ill patients. However, there is a dearth in literature related to this topic specifically in terms of preparing counselors to…
Addiss, D G; Tauxe, R V; Bernard, K W
Chronic diarrhoea of unknown aetiology is increasingly recognized as a problem in international travellers, and has been reported in US Peace Corps volunteers. In December 1987, we surveyed all Peace Corps medical officers to determine the magnitude of this problem and obtain preliminary data on potential risk factors. A rate of nine cases of chronic diarrhoea per 1000 volunteers per year was reported by medical officers representing 4607 volunteers in 43 countries. The highest rates were reported in Haiti, where one-third of the volunteers reportedly developed chronic diarrhoea during their two-year stay, as well as in Central and West Africa and Nepal. Volunteers were reported to drink unpasteurized milk routinely in eight (42%) of 19 countries with greater than or equal to one case of chronic diarrhoea during the previous two years, but in only two (11%) of 19 countries where none of the volunteers had chronic diarrhoea (odds ratio = 6.2, p = 0.06, Fisher exact test). Intensive prospective studies in areas of high incidence are needed to define this syndrome further.
Brewer, Joseph H; Thrasher, Jack D; Hooper, Dennis
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.
Disabled and chronically ill patients face many obstacles in maintaining oral hygiene at an appropriate level. Such a situation is caused, inter alia, by the fact that those people are less predisposed manually, but also by a lack of understanding of the need for carrying out systematic hygienic measures by disabled themselves as well as their parents or caregivers. Technical difficulties during the procedure of teeth cleaning are also a problem. Currently, specialized products designed to help disabled and chronically ill patients and their caregivers to perform daily preventive treatments are available on the market.
Margolis, Peter A; Peterson, Laura E; Seid, Michael
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.
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
Cudney, Shirley; Weinert, Clarann
The purpose of this article was to describe an online approach to providing chronic illness self-management information to rural women with chronic illness. To self-manage chronic illness, individuals require information about their conditions. For those in rural areas who have limited access to health services, computer-based interventions are a means of providing this information. Participants were randomly assigned either to an 11-week computer intervention in which they completed nine online self-study health teaching units related to self-management, or to a control group. The health teaching units were positively rated as being helpful in managing their chronic illnesses, with scores ranging from 4.09 to 4.84 on a six-point scale. Perceptions of computer skills increased significantly for the intervention group, with no increase in the control group. Computer-based programs can be an effective approach to providing health information to rural women with chronic conditions that will assist them in their self-management efforts.
Swendeman, Dallas; Ingram, Barbara L; Rotheram-Borus, Mary Jane
HIV/AIDS is widely recognized as a chronic illness within HIV care, but is often excluded from chronic disease lists outside the field. Similar to other chronic diseases, HIV requires lifetime changes in physical health, psychological functioning, social relations, and adoption of disease-specific regimens. The shift from acute to chronic illness requires a self-management model in which patients assume an active and informed role in healthcare decision making to change behaviors and social relations to optimize health and proactively address predictable challenges of chronic diseases generally and HIV specifically. This article reviews literature on chronic disease self-management to identify factors common across chronic diseases, highlight HIV-specific challenges, and review recent developments in self-management interventions for people living with HIV (PLH) and other chronic diseases. An integrated framework of common elements or tasks in chronic disease self-management is presented that outlines 14 elements in three broad categories: physical health; psychological functioning; and social relationships. Common elements for physical health include: a framework for understanding illness and wellness; health promoting behaviors; treatment adherence; self-monitoring of physical status; accessing appropriate treatment and services; and preventing transmission. Elements related to psychological functioning include: self-efficacy and empowerment; cognitive skills; reducing negative emotional states; and managing identity shifts. Social relationship elements include: collaborative relationships with healthcare providers; social support; disclosure and stigma management; and positive social and family relationships. There is a global need to scale up chronic disease self-management services, including for HIV, but there are significant challenges related to healthcare system and provider capacities, and stigma is a significant barrier to HIV-identified service
Naliboff, Bruce D.; And Others
Developed sorting rules to identify Minnesota Multiphasic Personality Inventory configurations and applied these to patients with chronic low back pain, migraine headaches, hypertension, and diabetes (N=157). Results showed that profile types did not differ in frequency among the groups but were more elevated in the back pain patients. (LLL)
Objectives: This article aims to elaborate chronotope disruption —a changed relation to time and space— as a sensitizing concept for understanding chronic illness narratives. Methods: Sixteen men and 16 women with Type 2 diabetes were purposefully sampled. Each was interviewed about his or her experience of diabetes self-management using the biographical-narrative interview method. Transcripts were inspected for key moments defined as emotionally laden stories relevant to the purpose of the research. We present dialogically inflected discursive analysis of exemplar extracts. Results: The analysis demonstrates how the concept of chronotope disruption helps identify, and understand, important aspects of patients’ chronic illness narratives. First, we investigate how medical advice can conflict with embodied experience and how progressive bodily deterioration can provoke a reevaluation of past illness (self-mis)management. Second, the increasing temporal and spatial intrusion of chronic illness into participants’ lives is examined. Finally, we focus on the masquerade of health as an attempt to manage, hide, or deny that one is physically challenged. Conclusions: Chronotope disruption offers a useful sensitizing concept for approaching chronic illness narratives and around which to organize analytical insights and to develop practice. Chronotope analysis fills an important gap in the science through compensating current health sciences’ focus on rationality, cognition, and prospective time (prediction) with a patient-oriented focus on emotionality, embodiment, and retrospective time (nostalgia). Chronotope disruption could be used to develop practice by gaining empathic understanding of patients’ life-worlds and provides a tool to examine how new technologies change the way in which the chronically ill have “being” in the world. PMID:25197985
Barnack, Jessica L; Chrisler, Joan C
The diagnosis of a chronic illness is a life changing event that affects the biological, psychological, and sociological aspects of a person's life. The purpose of the present study was to compare the experiences of pain, physical and psychological well-being, stress, patient satisfaction, social support, and attitudes toward menstruation of women who suffer from endometriosis and women who suffer from chronic migraine headaches. It was hypothesized that women with endometriosis would have more negative scores than women who have migraines on all measures because endometriosis is not understood by society to be a valid source of pain. Participants were 41 women with endometriosis and 32 women with migraines who were recruited from support groups and online listservs. Women with endometriosis reported significantly more pain, stress, and negative attitudes toward menstruation than did women with migraines. Implications for the differential treatment of women with chronic illnesses related to the menstrual cycle are discussed.
Farpour-Lambert, Nathalie J; Keller-Marchand, Laetitia; Rizzoli, René; Schwitzgebel, Valérie; Dubuis, Jean-Michel; Hans, Didier; Hofer, Michael F; Suter, Susanne
Children with chronic diseases are at increased risk of sub-optimal bone mineral acquisition and osteoporosis, especially those who have a growth and pubertal delay, reduced physical activity, inadequate nutrition, malabsorption or take medications which may influence bone development. Weight-bearing physical activity has a beneficial effect on bone development of healthy children but little is known in children with chronic diseases. Preliminary results of our cross-sectional study in children with juvenile idiopathic arthritis (JIA) suggest that hip bone mineral density is positively related with physical fitness and muscle strength and is reduced at the more affected side. We have initiated two randomized controlled trials to determine the effects of a moderate impact exercise training program on bone mineral density of children with JIA and type 1 diabetes mellitus.
Handlos, Line Neerup; Olwig, Karen Fog; Bygbjerg, Ib Christian; Kristiansen, Maria; Norredam, Marie Louise
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
Background More and more pediatric patients reach adulthood. Some of them are successfully integrating in adult life, but many others are not. Possibly Illness cognitions (IC) - the way people give meaning to their illness/disability – may play a role in individual differences on long-term adjustment. This study explored the association of IC with disease–characteristics and Health Related Quality of Life (HRQoL), anxiety and depression in young adults with a disability benefit due to childhood-onset chronic condition. Methods In a cross-sectional study, young adults (22–31 years, N = 377) who claimed a disability benefit because of a somatic condition since childhood, completed the Illness Cognition Questionnaire (acceptance-helplessness-benefits), RAND-36 (HRQoL) and HADS (anxiety and depression) online. Besides descriptive statistics, linear regression analyses were conducted to predict (1) illness cognitions by age, gender and disease-characteristics, and (2) HRQoL (Mental and Physical Component Scale), Anxiety and Depression by illness cognitions, controlling for disease-characteristics, age and gender. Results Respectively 90.2%, 83.8% and 53.3% of the young adults with a disability benefit experienced feelings of acceptance, benefits and helplessness. Several disease-characteristics were associated with IC. More acceptance and less helplessness were associated with better mental (β = 0.31; β = −0.32) and physical (β = 0.16; β = −0.15) HRQoL and with less anxiety (β = −0.27; β = 0.28) and depression (β = −0.29; β = 0.31). Conclusions IC of young adult beneficiaries were associated with their HRQoL and feelings of anxiety and depression. Early recognition of psychological distress and negative IC might be a key to the identification of pediatric patients at risk for long-term dysfunction. Identification of maladaptive illness cognitions enables the development of psychosocial interventions to optimise
Motoki, Emi; Mori, Kikuko; Kaji, Hidesuke; Nonami, Yoko; Fukano, Chika; Kayano, Tomonori; Kawada, Terue; Kimura, Yukari; Yasui, Kumiko; Ueki, Hiroko; Ugai, Kazuhiro
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
Engelke, Martha Keehner; Guttu, Martha; Warren, Michelle B.; Swanson, Melvin
More children with chronic illnesses are attending school, and some of them struggle academically because of issues related to their health. School-based case management has been suggested as one strategy to improve the academic success of these children. This study tracked the academic, health, and quality of life outcomes for 114 children with…
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…
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…
Chen, Cliff Yung-Chi
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…
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…
Ferguson, Peter; Walker, Hannah
This paper shows the ways in which "resilience" operates with adolescents whose lives have been marked by a significant health condition. It is based on a qualitative study that followed 31 adolescents, dealing with chronic illness, across 3 years of their lives. The study placed the adolescents at the centre of the research process,…
Emerson, Natacha D.; Distelberg, Brian; Morrell, Holly E. R.; Williams-Reade, Jackie; Tapanes, Daniel; Montgomery, Susanne
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…
Sieh, D. S.; Meijer, A. M.; Oort, F. J.; Visser-Meily, J. M. A.; Van der Leij, D. A. V.
The aim of this meta-analysis is to examine whether children of chronically ill parents differ from norm groups in problem behavior. We report moderator effects and overall effect sizes for internalizing, externalizing and total problem behavior assessed by children and parents. In fixed effect models, we found a significant overall effect size…
Morden, Andrew; Jinks, Clare; Ong, Bie Nio
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. PMID:23226974
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…
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);…
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…
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,…
Chin, Jui-Chih; Tsuei, Mengping
The aim of this study was to explore the digital game-based learning for children with chronic illnesses in the hospital settings. The design-based research and qualitative methods were applied. Three eight-year-old children with leukemia participated in this study. In the first phase, the multi-user game-based learning system was developed and…
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…
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…
Miller, Christy L.
Questionnaires were completed by parents and fifth- and sixth-grade children (1,180 healthy, 151 chronically ill, 54 hyperactive, and 54 with severe vision or hearing impairments). The instruments were designed to measure three types of value: utility value (how important success at a task is for achieving future goals); attainment value (the…
Repetto, Jeanne B.; Horky, Susan Chauncey; Miney, Angela; Reiss, John; Saidi, Arwa; Wolcott, Lisa; Saldana, Pablo; Jaress, Jennifer M.
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…
Maslow, Gary; Haydon, Abigail A.; McRee, Annie-Laurie; Halpern, Carolyn T.
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…
King, Judy; Taylor, Maurice C.
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,…
Chan, Fong; Chiu, Chung-Yi; Bezyak, Jill L.; Keegan, John
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…
Theeke, Laurie A; Goins, R Turner; Moore, Julia; Campbell, Heather
This study's purpose was to describe loneliness and to examine the relationships between loneliness, depression, social support, and QOL in chronically ill, older Appalachians. In-person interviews were conducted with a convenience sample of 60 older, chronically ill, community-dwelling, and rural adults. Those with dementia or active grief were excluded. The UCLA Loneliness Scale (Russell, Peplau, & Cutrona, 1985), Geriatric Depression Scale (Shiekh & Yesavage, 1986), Katz ADL scale (Katz, Down, & Cash, 1970), MOS Social Support Scale (Sherbourne & Stewart, 1991), and a visual analog scale for Quality of Life (Spitzer et al., 1981) scale were used. Diagnoses were obtained through chart reviews. SPSS was used for data analyses. The majority of the 65% female sample (M age = 75 years) were married and impoverished. Participants' number of chronic illnesses averaged more than 3. Over 88% of participants reported at least 1 area of functional impairment. Loneliness was prevalent with UCLA loneliness scores indicating moderate to high loneliness, ranging from 39 to 62 (possible scores were 20-80). Higher loneliness scores correlated with depression, lower Qol, and lower social support, particularly lower emotional support. This study provides evidence that loneliness is a significant problem for older chronically ill Appalachian adults and that it may be related to low emotional support. Further, it provides evidence that this population may be significantly lonely and may not self-identify as lonely. Screening for loneliness and designing interventions that target the emotional aspects of loneliness could be important in this population.
Chou, Kee-Lee; Chi, Iris
Depression is quite common among the elderly members of Hong Kong Chinese society. This study examined the impact of a series of chronic illnesses on change in depressive symptoms among the older people. The respondents were 260 people aged 70 years or older from a longitudinal study of a representative community sample of the elderly population…
Gignac, Monique A. M.; Cott, Cheryl A.; Badley, Elizabeth M.
This study examined the impact of the 1998 Canadian ice storm on the physical and psychological health of older adults (age greater than 55 years) living with a chronic physical illness, namely osteoarthritis and/or osteoporosis. Although disasters are relatively rare, they are a useful means of examining the impact of a single stressor on a group…
Orbach, Israel; And Others
Evaluated attitudes toward life and death held by suicidal, chronically ill, and normal children (N=84) by obtaining answers to questions about fairy tales representing attraction or repulsion by life or death. Each group had a unique response profile that differentiated it from the others. (BH)
Wills, Gary; Ranchhod, Ashok
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
Keehner Engelke, Martha; Guttu, Martha; Warren, Michelle B; Swanson, Melvin
More children with chronic illnesses are attending school, and some of them struggle academically because of issues related to their health. School-based case management has been suggested as one strategy to improve the academic success of these children. This study tracked the academic, health, and quality of life outcomes for 114 children with asthma, diabetes, severe allergies, seizures, or sickle-cell anemia in 5 different school districts who were provided case management by school nurses. The children ranged in age from 5 to 19 years. At the end of the school year, children experienced an improvement in quality of life and gained skills and knowledge to manage their illness more effectively. Classroom participation, grades, and participation in extracurricular activities also increased for many children. The study provides evidence of the positive impact school nurses have on children with chronic illness and suggests ways they can measure the outcomes of their interventions.
Flynn, Samantha; Hulbert-Williams, Nicholas; Hulbert-Williams, Lee; Bramwell, Ros
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…
Haas, D L
The conditions under which children with long-term chronic health problems are cared for have changed dramatically in the past decade. These children are more often living longer and being cared for at home by their families and nursing supports. An effective tool allowing nurses to systematically assess, plan, implement, and evaluate the care needs of these children is a nursing theory. Orem's (1985) self- or dependent-care deficit theory is a useful basis from which the care of the chronically ill pediatric population can be planned. Attention is given to a caring relationship in which there is a dependent person in need of care and an individual who serves as that dependent person's agent of care. This article discusses several of the major concepts of the self- or dependent-care deficit theory and how it can be applied to guide clinical nursing practice aimed at meeting the care demands of the pediatric chronically ill population and their families.
Ocampo, Christopher J.
Background: A subset of patients with chronic rhinosinusitis (CRS) has refractory disease. The risk factors for refractory CRS include atopy, a disrupted mucociliary transport system, medical conditions affecting the sinonasal tract mucosa, and immunodeficiency. Methods: We review four primary immunodeficiencies reported in individuals with CRS: common variable immune deficiency (CVID), selective IgA deficiency, IgG subclass deficiency, and specific antibody deficiency. We also review treatment options for individuals with both CRS and a concomitant immune defect. Results: There is a high prevalence of CRS in individuals with CVID and selective IgA deficiency. While many reports describe IgG subclass deficiency in individuals with CRS, the clinical relevance of this is unclear. Specific antibody deficiency may play a more significant role in the pathogenesis of refractory CRS. Conclusion: Screening for a primary immunodeficiency should be part of the diagnostic workup of refractory CRS, as its identification may allow for more effective long-term therapeutic options. PMID:23406598
Conthe, P; Márquez Contreras, E; Aliaga Pérez, A; Barragán García, B; Fernández de Cano Martín, M N; González Jurado, M; Ollero Baturone, M; Pinto, J L
Long-term chronic diseases have a high mortality rate around the world, affecting both genders equally. Despite improvements in the diagnosis and treatment of various health problems, lack of treatment compliance remains an obstacle to improving health and patient quality of life, and it carries a high associated socio-healthcare cost. The objectives of this study were to develop the concept of «therapeutic adherence», which includes both pharmacological compliance as well as non-pharmacological (level of agreement and patient involvement, lifestyle changes, etc.) treatments. The study also aimed to establish the clinical and socio-health impact of non-compliance, the reasons for non-compliance, and methods and strategies to improve compliance. The results of this study support therapeutic adherence as an essential goal of the healthcare system that encompasses all stakeholders involved in patient health.
Jones, James F; Maloney, Elizabeth M; Boneva, Roumiana S; Jones, Ann-Britt; Reeves, William C
Background Chronic fatiguing illnesses, including chronic fatigue syndrome (CFS), pose a diagnostic and therapeutic challenge. Previous clinical reports addressed the utilization of health care provided to patients with CFS by a variety of practitioners with other than allopathic training, but did not examine the spectrum of complementary and alternative medicine (CAM) therapies used. This study was designed to measure CAM therapy use by persons with fatiguing illnesses in the United States population. Methods During a random-digit dialing survey to estimate the prevalence of CFS-like illness in urban and rural populations from different geographic regions of the United States, we queried the utilization of CAM including manipulation or body-based therapies, alternative medical systems, mind-body, biologically-based, and energy modalities. Results Four hundred forty fatigued and 444 non-fatigued persons from 2,728 households completed screening. Fatigued subjects included 53 persons with prolonged fatigue, 338 with chronic fatigue, and 49 with CFS-like illness. Mind-body therapy (primarily personal prayer and prayer by others) was the most frequently used CAM across all groups. Among women, there was a significant trend of increasing overall CAM use across all subgroups (p-trend = 0.003). All categories of CAM use were associated with significantly poorer physical health scores, and all but one (alternative medicine systems) were associated with significantly poorer mental health scores. People with CFS-like illness were significantly more likely to use body-based therapy (chiropractic and massage) than non-fatigued participants (OR = 2.52, CI = 1.32, 4.82). Use of body-based therapies increased significantly in a linear trend across subgroups of non-fatigued, prolonged fatigued, chronic fatigued, and CFS-like subjects (p-trend = 0.002). People with chronic fatigue were also significantly more likely to use body-based therapy (OR = 1.52, CI = 1.07, 2.16) and mind
van den Brink-Muinen, A; Rijken, PM
Background People's trust in health care and health care professionals is essential for the effectiveness of health care, especially for chronically ill people, since chronic diseases are by definition (partly) incurable. Therefore, it may be understandable that chronically ill people turn to complementary and alternative medicine (CAM), often in addition to regular care. Chronically ill people use CAM two to five times more often than non-chronically ill people. The trust of chronically ill people in health care and health care professionals and the relationship of this with CAM use have not been reported until now. In this study, we examine the influence of chronically ill people's trust in health care and health care professionals on CAM use. Methods The present sample comprises respondents of the 'Panel of Patients with Chronic Diseases' (PPCD). Patients (≥25 years) were selected by GPs. A total of 1,625 chronically ill people were included. Trust and CAM use was measured by a written questionnaire. Statistical analyses were t tests for independent samples, Chi-square and one-way analysis of variance, and logistic regression analysis. Results Chronically ill people have a relatively low level of trust in future health care. They trust certified alternative practitioners less than regular health care professionals, and non-certified alternative practitioners less still. The less trust patients have in future health care, the more they will be inclined to use CAM, when controlling for socio-demographic and disease characteristics. Conclusion Trust in future health care is a significant predictor of CAM use. Chronically ill people's use of CAM may increase in the near future. Health policy makers should, therefore, be alert to the quality of practising alternative practitioners, for example by insisting on professional certification. Equally, good quality may increase people's trust in public health care. PMID:16848897
J. Katon, Wayne.
There is a bidirectional relationship between depression and chronic medical disorders. The adverse health risk behaviors and psychobiological changes associated with depression increase the risk for chronic medical disorders, and biological changes and complications associated with chronic medical disorders may precipitate depressive episodes. Comorbid depression is associated with increased medical symptom burden, functional impairment, medical costs, poor adherence to self-care regimens, and increased risk of morbidity and mortality in patients with chronic medical disorders. Depression may worsen the course of medical disorders because of its effect on proinflammatory factors, hypothalamic-pituitary axis, autonomic nervous system, and metabolic factors, in addition to being associated with a higher risk of obesity, sedentary lifestyle, smoking, and poor adherence to medical regimens. Both evidence-based psychotherapies and antidepressant medication are efficacious treatments for depression. Collaborative depression care has been shown to be an effective way to deliver these treatments to large primary care populations with depression and chronic medical illness. PMID:21485743
Županić-Krmek; Sučić, Mirna; Bekić, Dinko
The anemia of chronic disease (ACD) is the most prevalent anemia after iron deficiency anemia. It is associated with infectious, inflammatory and neoplastic disease. ACD is a medical condition caused by the release of cytokines which mediate inflammatory and immune response (tumor necrosis factor, interleukins 1 and 6, and interferon). Abnormal iron metabolism with iron trapping in reticuloendothelial cells is primarily the cause of this condition, making iron unavailable for erythropoiesis although iron tissue reserves are elevated. Disorder in erythropoietin secretion and shortening of red cell life span also play a role in the pathogenesis of ACD. The main therapy is treatment of the underlying disorder and red cell transfusions in severe anemia. In more severe (protracted) anemias that lead to impaired quality of life and have an impact on the mortality and survival rate, erythropoiesis stimulating agents are used. Recently, new possibilities are being evaluated in terms of therapy for ACD in defined conditions, such as chelating agents, as well as hepcidin antagonist and other erythropoiesis stimulating agents.
Peltzer, Karl; Pengpid, Supa
ABSTRACT The aim of this study was to explore the prevalence and relationship of anticipated chronic illness stigma among patients diagnosed with a variety of chronic diseases in three Southeast Asian countries (Cambodia, Myanmar and Vietnam). A cross-sectional survey was conducted in 4,803 adult chronic disease patients (mean age 49.3 years; SD=16.5) recruited systematically from health facilities. Overall, the results indicate that 20.7% of patients reported that for any of the 12 stigma items, they anticipated they were likely or very likely to experience chronic disease stigma. A multivariate analysis of sociodemographics revealed the following were associated with anticipated chronic disease stigma: older versus younger age, OR (odds ratio) = 0.71; 95% Confidence Interval (CI) [0.58, 0.87]; higher versus lower education, OR = 2.23; 95% CI [1.81, 2.75]; origin from Myanmar or Vietnam, being single, divorced or widowed, rural residence, and health status (having three or more chronic conditions versus having one chronic condition), OR = 1.93; 95% CI [1.58, 2.35]; lower versus higher quality of life, OR = 0.73; 95% CI [0.63, 0.85]); health risk behavior (physical inactivity, poor diet, current smoking, and problem drinking) and low versus medium or high medication adherence (OR = 0.69; 95% CI [0.55,0.86]). This study demonstrated the possible consequences of anticipated stigma on the health and behavior of people living with chronic diseases, and several factors for chronic disease stigma were identified that can help guide interventions to reduce chronic illness stigma in this population. PMID:28008198
Peltzer, Karl; Pengpid, Supa
The aim of this study was to explore the prevalence and relationship of anticipated chronic illness stigma among patients diagnosed with a variety of chronic diseases in three Southeast Asian countries (Cambodia, Myanmar and Vietnam). A cross-sectional survey was conducted in 4,803 adult chronic disease patients (mean age 49.3 years; SD=16.5) recruited systematically from health facilities. Overall, the results indicate that 20.7% of patients reported that for any of the 12 stigma items, they anticipated they were likely or very likely to experience chronic disease stigma. A multivariate analysis of sociodemographics revealed the following were associated with anticipated chronic disease stigma: older versus younger age, OR (odds ratio) = 0.71; 95% Confidence Interval (CI) [0.58, 0.87]; higher versus lower education, OR = 2.23; 95% CI [1.81, 2.75]; origin from Myanmar or Vietnam, being single, divorced or widowed, rural residence, and health status (having three or more chronic conditions versus having one chronic condition), OR = 1.93; 95% CI [1.58, 2.35]; lower versus higher quality of life, OR = 0.73; 95% CI [0.63, 0.85]); health risk behavior (physical inactivity, poor diet, current smoking, and problem drinking) and low versus medium or high medication adherence (OR = 0.69; 95% CI [0.55,0.86]). This study demonstrated the possible consequences of anticipated stigma on the health and behavior of people living with chronic diseases, and several factors for chronic disease stigma were identified that can help guide interventions to reduce chronic illness stigma in this population.
Knaul, Felicia Marie; Bhadelia, Afsan; Atun, Rifat; Frenk, Julio
Health systems in low- and middle-income countries were designed to provide episodic care for acute conditions. However, the burden of disease has shifted to be overwhelmingly dominated by chronic conditions and illnesses that require health systems to function in an integrated manner across a spectrum of disease stages from prevention to palliation. Low- and middle-income countries are also aiming to ensure health care access for all through universal health coverage. This article proposes a framework of effective universal health coverage intended to meet the challenge of chronic illnesses. It outlines strategies to strengthen health systems through a "diagonal approach." We argue that the core challenge to health systems is chronicity of illness that requires ongoing and long-term health care. The example of breast cancer within the broader context of health system reform in Mexico is presented to illustrate effective universal health coverage along the chronic disease continuum and across health systems functions. The article concludes with recommendations to strengthen health systems in order to achieve effective universal health coverage.
McCorkle, Ruth; Ercolano, Elizabeth; Lazenby, Mark; Schulman-Green, Dena; Schilling, Lynne S.; Lorig, Kate; Wagner, Edward H.
With recent improvements in early detection, diagnosis and treatment of cancer, people with cancer are living longer, and their cancer may be managed as a chronic illness. Cancer as a chronic illness places new demands on patients and families to manage their own care, and it challenges old paradigms that oncology's work is done after treatment. As a chronic illness, however, cancer care occurs on a continuum that stretches from prevention to the end of life, with early detection, diagnosis, treatment, and survivorship in between. In this paper, we review self-management interventions that enable patients and families to participate in managing their care along this continuum. We review randomized controlled trials of self-management interventions with cancer patients and families in the treatment, survivorship, and end-of-life phases of the cancer-care continuum. We also present the Chronic Care Model as a model of care that oncology practices can use to enable and empower patients and families to engage in self-management. We conclude that, the need for a common language by which to speak about self-management and a common set of self-management actions for cancer care notwithstanding, oncology practices can now build strong relationships with their patients and formulate mutually-agreed upon care plans that enable and empower patients to care for themselves in the way they prefer. PMID:21205833
Jones, Danson R.; Macias, Cathaleene; Barreira, Paul J.; Fisher, William H.; Hargreaves, William A.; Harding, Courtenay M.
Objectives: This study examined Medicaid claims forms to determine the prevalence, severity, and co-occurrence of physical illness within a representative sample of persons with serious mental illness (N=147). Methods: Representativeness of health problems in the study sample was established through comparison with a larger sample of persons with serious mental illness enrolled in Medicaid within the same state. Standardized annual costs were then assigned to Medicaid claims diagnoses, and individual health problem severity was measured as the sum of estimated treatment costs for diagnosed conditions. Results: Seventy-four percent of the study sample (N=109) had been given a diagnosis of at least one chronic health problem, and 50 percent (N=73) had been given a diagnosis of two or more chronic health problems. Of the 14 chronic health conditions surveyed, chronic pulmonary illness was the most prevalent (31 percent incidence) and the most comorbid. Persons with chronic pulmonary illness were second only to those with infectious diseases in average annual cost of treatment ($8,277). Also, 50 percent or more of participants in eight other diagnostic categories had chronic pulmonary illness. A regression analysis identified age, obesity, and substance use disorders as significant predictors of individual health problem severity. Conclusions: Risk adjustment for physical health is essential when setting performance standards or cost expectations for mental health treatment. Excluding persons with chronic health problems from mental health service evaluations restricts generalizability of research findings and may promote interventions that are inappropriate for many persons with serious mental illness. PMID:15534013
McQuoid, Julia; Welsh, Jennifer; Strazdins, Lyndall; Griffin, Amy L; Banwell, Cathy
The upward trend of chronic illness in working age populations calls for better understanding of the difficulties chronically ill people face with workforce participation. Existing research focuses primarily on physical limitations and employer attitudes about chronic illness. Here we use a space-time approach to illuminate the importance of negotiating logistical challenges and embodied rhythms when balancing work and chronic illness. We draw from time geography and rhythmanalysis in analysing interviews from a qualitative case study of 26 individuals living with chronic kidney disease in Australia. Difficulties with paid work arise from: (1) competition for space-time resources by employers and health services; (2) arrhythmias between the body, work and health services; and (3) the absence of workplace rhythms on which to 'hook' health activities. Implications for workplaces and health services design are discussed.
Ahola Kohut, Sara; Stinson, Jennifer; Forgeron, Paula; van Wyk, Margaret; Harris, Lauren; Luca, Stephanie
This article endeavored to determine the topics of discussion during open-ended peer mentoring between adolescents and young adults living with chronic illness. This study occurred alongside a study of the iPeer2Peer Program. Fifty-two calls (7 mentor-mentee pairings) were audio recorded, transcribed verbatim, and analyzed using inductive coding with an additional 30 calls (21 mentor-mentee pairings) coded to ensure representativeness of the data. Three categories emerged: (1) illness impact (e.g., relationships, school/work, self-identity, personal stories), (2) self-management (e.g., treatment adherence, transition to adult care, coping strategies), and (3) non-illness-related adolescent issues (e.g., post-secondary goals, hobbies, social environments). Differences in discussed topics were noted between sexes and by diagnosis. Peer mentors provided informational, appraisal, and emotional support to adolescents.
Haslbeck, Jörg W; Schaeffer, Doris
Self-management in chronic illness has been discussed internationally for some time now. It has become increasingly important in German speaking countries as well. During the last years programs for self-management support have been developed with good progress. At the same time self-management has turned into a collective term. This article aims at clarifying terms and discussing aspects of definitions and concepts of self-management. Furthermore, it presents the tasks of self-management support and discusses needs for further discussion and action. The main focus of this article is on the importance of self-management support in dealing with chronic illness--one of the most important areas of its application.
Gilleard, Chris; Higgs, Paul
This article is a response to David Armstrong's recent, revisionist account of the epidemiological transition which he claims replaced earlier discourses of ageing with new discourses of chronic disease. We argue (i) that he misrepresents a key element in Omran's account of the epidemiological transition, namely the decline in infant, child and maternal mortality; (ii) that he fails to acknowledge debates going back centuries in Western medicine over the distinctions between natural and accidental death and between endogenous and extrinsic causes of ageing and (iii) that he misrepresents the growth of medical interest in the everyday illnesses of old age over the course of the 20th century as a discourse of suppression rather than a process of inclusion. While we would acknowledge that the chronic illnesses of today are different from those of the past, this amounts to something more than the changing semantics of senility. PMID:25155775
Distelberg, Brian J.; Emerson, Natacha D.; Gavaza, Paul; Tapanes, Daniel; Brown, Whitney N.; Shah, Huma; Williams-Reade, Jacqueline; Montgomery, Susanne
Despite recent increases of psychosocial programs for pediatric chronic illness, few studies have explored their economic benefits. This study investigated the costs–benefits of a family systems-based, psychosocial intervention for pediatric chronic illness (MEND: Mastering Each New Direction). A quasi-prospective study compared the 12-month pre–post direct and indirect costs of 20 families. The total cost for program was estimated to $5,320. Families incurred $15,249 less in direct and $15,627 less in indirect costs after MEND. On average, medical expenses reduced by 86% in direct and indirect costs, for a cost–benefit ratio of 0.17. Therefore, for every dollar spent on the program, families and their third payers saved approximately $5.74. Implications for healthcare policy and reimbursements are discussed. PMID:27282311
Williams, Jane; Phillips, Catherine; Byrd, Hollie Marie
Simple Summary Cancer is as common amongst pets as it in humans. Chemotherapy can be integrated into treatment regimes for terminally ill pets to attempt to shrink tumours to extend life expectancy, but it does not cure cancer and it can have negative side effects including vomiting, depression and behavioral changes. To date, little research has been undertaken to explore owners’ decisions whether or not to treat their animals with chemotherapy. Seventy-eight dog and cat owners completed an online questionnaire to determine if they would opt for chemotherapy if their pet was diagnosed with cancer, and asked how they thought their pet’s quality of life would be affected. Fifty-eight percent of respondents would not use chemotherapy largely due to their previous experience of it. Seventy-two percent over estimated pet survival time post chemotherapy, with most people believing it would lead to remission or a cure. Owners expected their pets to be less active, sleep more and play less, reducing their quality of life. Common side effects associated with chemotherapy were not rated as acceptable. The results suggest pet owners would benefit from an increased understanding of the positive and negative impacts of chemotherapy when initially discussing treatment options with the veterinary team. Abstract Chemotherapy is a commonly integrated treatment option within human and animal oncology regimes. Limited research has investigated pet owners’ treatment decision-making in animals diagnosed with malignant neoplasia. Dog and cat owners were asked to complete an online questionnaire to elucidate factors which are key to the decision making process. Seventy-eight respondents completed the questionnaire in full. Fifty-eight percent of pet owners would not elect to treat pets with chemotherapy due to the negative impact of the associated side effects. Seventy-two percent of respondents over estimated pet survival time post chemotherapy, indicating a general perception
Sauerwein, H P; Romijn, J A
Weight loss is an independent risk factor for mortality in chronically ill weight-losing patients. Hunger strikers and chronically ill patients die after a weight loss of about 40%; weight loss is strongly correlated with loss of lean body mass. Lean body mass is determined by protein synthesis and protein breakdown. Increased supply of amino acids diminishes loss of lean body mass. It is advisable to increase the protein content of the diet of chronically ill weight-losing patients to the level that maximally stimulates protein synthesis, i.e. 1.5 g protein/kg/day.
Cadman, D; Boyle, M H; Offord, D R; Szatmari, P; Rae-Grant, N I; Crawford, J; Byles, J
The Ontario Child Health Study (OCHS) was based on interviews of 1869 Ontario families who were selected by means of a stratified, multistaged sampling method from the 1981 census of Canada. Its primary purpose was to determine the prevalence and distribution of mental health problems in Ontario children aged 4 to 16 years and their families, but it also allowed an estimate of other significant medical conditions and provided an overview of these children's use of health care, education and social services. Our results are based on questionnaire responses concerning 3294 children. Limitation of function without a chronic illness or medical condition was reported in 1.9%, the converse in 14.0%, and a chronic illness or medical condition with limitation of function in 3.7%. When the three groups are considered together, 19.6% of Ontario children had a chronic health problem. Children of lower socioeconomic status were much more likely to have chronic health problems. Overall, children with chronic health problems were more likely to use physician, special education, social and mental health services. These findings have implications for those who provide services for children, plan community programs or train professionals in caring for children. PMID:3756702
Radcliffe, Eloise; Lowton, Karen; Morgan, Myfanwy
Illness narratives have mainly focused on individual patients' accounts, and particularly those of people experiencing the onset of chronic illness in mid-life. However, a growing number of older people are spending their later life with their partner, with both experiencing complex morbidities. We examine the shared creation of meanings among older stroke survivors and their spouses and the implications for individual and couple identity. Joint biographical narrative interviews were held with 13 stroke survivors aged 75-85 and their spouses. The analysis examined both narrative content and narrative style. Three main types of co-presentation of identity were identified. The 'united couple' described couples who pulled together and emphasised their accommodation of the stroke and normality as a couple, despite often considerable disability, and was strongly underpinned by collaborative interaction in interviews. Caring relationships were distinguished as 'positive', involving self-reliant couples who took pride in how they managed and 'frustrated' in couples who emphasised the difficulties of caring and hardships experienced and were characterised by a conflictual style of narrative. We argue that joint interviews provide new forms of data that extend notions of how illness is lived and demonstrates how the marital relationship can mediate the experience of chronic illness and disability and its impact on identity.
The presence of a chronically ill or mentally handicapped child in a family can be a stress for the child's siblings, who often are ill informed about the nature and prognosis of the illness, may be uncertain what is expected of them in the caregiving role, may feel their own identities threatened, and may experience ostracism by their friends and misunderstanding at school. Although individual reactions vary widely, feelings of anger, guilt, resentment and shame are commonly reported. Excessive responsibility and concern about one's identity may add to these feelings and culminate in psychologic problems in the sibling. The physician caring for the family must be alert for symptoms of emotional disturbance or social maladjustment among the siblings of chronically ill or mentally handicapped children and should be prepared to counsel the family or refer them to a counsellor experienced in this area. In general, the first step is to be sure that the sibling is fully informed about the condition and to encourage frank discussion between the parents and the handicapped child's siblings. PMID:3555760
Smith, Eleanor; Lai, Jin-Shei; Cella, David
The shared goal of all clinical disciplines is to optimize the well-being of people who become patients and find themselves diminished by illness and recovery. This goal relies on sound tools to evaluate both real and perceived deficits in a way that can be used for a particular patient over time and also across medical disciplines and patient populations. Fatigue is a critical and notoriously subjective aspect of many illnesses. Although the soundness of research is often correlated with the objectivity of data, certain clinical measures must, by definition, be patient centered, with all the complexities and challenges of patient-reported evaluations. Measurement of fatigue has been an important and evolving component of symptom management in the field of oncology. The Functional Assessment of Chronic Illness Therapy Fatigue Scale is a self-administered fatigue-assessment tool that has found wide application across diverse medical fields and that has demonstrated validity and utility across a broad range of populations. The Functional Assessment of Chronic Illness Therapy Fatigue Scale has become one in a repository of tools in the item banks that are accumulating under the auspices of The Patient-Reported Outcomes Measurement Information System, a National Institutes of Health initiative to deploy the most clinically relevant and technologically agile tools that we have to advance research in medicine and patient care. As much as with any other discipline, physical medicine and rehabilitation stands to gain from the collective knowledge and creative horizons in the assessment and treatment of fatigue.
Hannum, Susan M.; Rubinstein, Robert L.
This study, using ethnographically-based interviews, sought to describe how chronically ill older adults experience a new cancer diagnosis and the effects of this on their interpretations of personal health, aging, and the future. Three semi-structured interviews were conducted with each of the fifteen informants. We asked questions that explored the individual's life history, chronic illness occurrence, and direct experiences with cancer. Interviews were structured to provide social and historical contexts to enhance our understanding of the informants’ illness narratives. Interview transcripts were analyzed thematically to describe how individuals described the cancer experience, its meaning, and its consequences. One of the major findings of our study was the role of cancer in disrupting individual biography, an interruption that fragmented time into three distinct segments: the Recalled Past, the Existent Present, and the Imagined Future. We highlight three main themes around the experience of illness-related time: (a) disruption found in individual biographical accounts as a result of fragmented time dimensions; (b) altered projections of a continuous sense of self into the future; and (c) modified treatment decisions resulting from a perceived altered life course and the finitude of advancing age. We further introduce the concept of Anomalous Time as a permutation of time central to individual experiences of cancer. Implications for how older adults understood their cancer and individual reactions relevant to seeking care are discussed. PMID:26880601
Shamsaei, Farshid; Cheraghi, Fatemeh; Esmaeilli, Ravanbakhsh
Background: 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. Objectives: The purpose of this study was to explore the challenges with which the family caregivers of patients with chronic mental illness have to contend. Materials and Methods: 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. Results: Our findings highlighted 4 main themes, namely stress and emotional distress, need for education and information, socioeconomic effects and support, and physical strain. Conclusions: Families experience frustrations when providing support and care to their mentally ill relatives. They, therefore, need appropriate support and intervention by mental health services. PMID:26576169
Friedrich, Elizabeth; Jawad, Abbas F.; Miller, Victoria A.
Families impacted by pediatric chronic illness must navigate treatment regimens that can present multiple problems and decisions to be addressed on a daily basis. The extent to which parents and children are able to solve such problems is likely to have implications for health behaviors and outcomes. The aims of this study were to examine correlates of problem resolution in families of children with a chronic illness. Participants were 167 children (ages 8-16) with type 1 diabetes or cystic fibrosis and a parent. Parent-child dyads recounted a recent discussion they had related to illness management and completed questionnaires. The research team coded the discussions for topic and outcome (i.e., did the dyad come up with a plan to address the problem). The results indicated that the majority of dyads in both illness groups came up with a plan during their discussions. Lack of problem resolution during the discussion was associated with higher parent coercion, more child resistance to the regimen, and worse adherence. Parent coercion and child resistance could be the targets of interventions to enhance problem solving and improve adherence. PMID:28133408
Background There currently exists a vast amount of literature concerning chronic illness self-management, however the developmental patterns and sustainability of self-management over time remain largely unknown. This paper aims to describe the patterns by which different chronic illness self-management behaviors develop and are maintained over time. Method Twenty-one individuals newly diagnosed with chronic illnesses (e.g., diabetes, rheumatism, ischemic heart disease, multiple sclerosis, chronic renal disease, inflammatory bowel disease) were repeatedly interviewed over two-and-a-half years. The interviews were conducted in Sweden from 2006 to 2008. A total of 81 narrative interviews were analyzed with an interpretive description approach. Results The participants’ self-management behaviors could be described in four different developmental patterns: consistent, episodic, on demand, and transitional. The developmental patterns were related to specific self-management behaviors. Most participants took long-term medications in a consistent pattern, whereas exercise was often performed according to an episodic pattern. Participants managed health crises (e.g., angina, pain episodes) according to an on demand pattern and everyday changes due to illness (e.g., adaptation of work and household activities) according to a transitional pattern. All of the participants used more than one self-management pattern. Conclusion The findings show that self-management does not develop as one uniform pattern. Instead different self-management behaviors are enacted in different patterns. Therefore, it is likely that self-management activities require support strategies tailored to each behavior’s developmental pattern. PMID:23647658
Eccleston, Christopher; Palermo, Tonya M; Fisher, Emma; Law, Emily
Background Psychological therapies have been developed for parents of children and adolescents with a chronic illness. Such therapies include parent only or parent and child/adolescent, and are designed to treat parent behaviour, parent mental health, child behaviour/disability, child mental health, child symptoms and/or family functioning. No comprehensive, meta-analytic reviews have been published in this area. Objectives To evaluate the effectiveness of psychological therapies that include coping strategies for parents of children/adolescents with chronic illnesses (painful conditions, cancer, diabetes mellitus, asthma, traumatic brain injury, inflammatory bowel diseases, skin diseases or gynaecological disorders). The therapy will aim to improve parent behaviour, parent mental health, child behaviour/disability, child mental health, child symptoms and family functioning. Search methods We searched CENTRAL, MEDLINE, EMBASE and PsyclNFO for randomised controlled trials (RCTs) of psychological interventions that included parents of children and adolescents with a chronic illness. The initial search was from inception of these databases to June 2011 and we conducted a follow-up search from June 2011 to March 2012. We identified additional studies from the reference list of retrieved papers and from discussion with investigators. Selection criteria Included studies were RCTs of psychological interventions that delivered treatment to parents of children and adolescents (under 19 years of age) with a chronic illness compared to active control, wait list control or treatment as usual. We excluded studies if the parent component was a coaching intervention, the aim of the intervention was health prevention/promotion, the comparator was a pharmacological treatment, the child/adolescent had an illness not listed above or the study included children with more than one type of chronic illness. Further to this, we excluded studies when the sample size of either comparator
Kingod, Natasja; Cleal, Bryan; Wahlberg, Ayo; Husted, Gitte R
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.
This meta-analysis integrates results from 330 studies on differences between body image of children and adolescents with and without chronic physical illness. Young people with a chronic illness had a less positive body image than their healthy peers although the average size of differences was small (g=-.30 standard deviation units). A comparison of diseases showed that young people with obesity (g=-.79), cystic fibrosis (g=-.50), scoliosis (g=-.41), asthma (g=-.37), growth hormone deficits (g=-.35), spina bifida (g=-.23), cancer (g=-.20), and diabetes (g=-.17) evaluated their body less positively than their healthy peers. Furthermore, levels of body dissatisfaction varied by age at onset of the disease, method for assessing body image, ethnicity, year of publication, and comparison group. Recommendations are stated for reducing effects of chronic illness on the body image of people with chronic illness.
Thille, Patricia H; Russell, Grant M
Current visions of family medicine and models of chronic illness management integrate evidence-based medicine with collaborative, patient-centered care, despite critiques that these constructs conflict with each other. With this potential conflict in mind, we applied a critical discursive psychology methodology to present discursive patterns articulated by 13 family physicians in Ontario, Canada, regarding care of patients living with multiple chronic illnesses. Physicians constructed competing versions of the terms "effective chronic illness management" and "patient involvement." One construction integrated individual responsibility for health with primacy of "evidence," resulting in a conceptualization consistent with paternalistic care. The second constructed effective care as involving active partnership of physician and patient, implying a need to foster the ability of both practitioners and patients to respond to complex challenges as they arose. The former pattern is inconsistent with visions of family medicine and chronic illness management, whereas the latter embodies it.
Chronic conditions and lifestyle behaviors have a detrimental influence on the quality of life for seniors because of physical disability and emotional concerns. This study aimed to assess the influence of chronic illness, smoking, and alcohol use on quality of life among Thai seniors. A cross-sectional study was conducted in three communities, selected purposively from the North, Northeast, and Central regions, and 1278 senior participants were recruited. Binary logistic regression was used to predict the influence of factors on quality of life with adjusted covariates. Most participants were aged 60–70 years and married, earned 500–1,000 Baht/month (US $17–$35), had one chronic illness, and were nonsmokers and nondrinkers. Surprisingly, there appeared to be no link between chronic conditions and quality of life. Current drinkers were more likely to have a high quality of life, with Odds Ratios of 2.16 for men and 2.73 for women. Seniors of both genders who were current drinkers were more likely to accept death and dying and this improved their quality of life. Social participation in alcohol consumption may encourage seniors to share their concerns about death and dying and eventually accept this as a foundation of life. PMID:27022604
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.
van Oers, H A; Haverman, L; Limperg, P F; van Dijk-Lokkart, E M; Maurice-Stam, H; Grootenhuis, M A
We aimed to determine the levels of anxiety and depression in mothers and fathers of a chronically ill child (0-18 years) and to study which parental and child variables are associated with anxiety and depression. In a cross-sectional design, anxiety and depression were assessed with the Hospital Anxiety and Depression Scale. Scores were compared to a Dutch reference group by analysis of variance and logistic regression analysis. Linear regression analyses were performed to examine which variables were associated with anxiety and depression. Mothers of a chronically ill child (n = 566) scored significantly higher than the reference group (p < .001) on anxiety (Mean 5.9 vs 4.8) and depression (Mean 4.5 vs 3.1). Fathers (n = 123) had higher depression scores (Mean 4.5 vs 3.6; p < .05), but fathers' anxiety scores were comparable to the reference group. The percentages of mothers in the clinical range of anxiety (31.8 vs 20.7 %, OR 2.03, 95 % CI 1.46-2.83) and depression (23.0 vs 12.0 %, OR 2.76, 95 % CI 1.84-4.13) were higher (p < .001) than in the reference group. No differences were found for fathers in the clinical range for anxiety and depression. Practical problems in daily life (a: β = .33, d: β = .25) and parenting stress (a: β = .30, d: β = .32) showed the strongest association with anxiety and depression for parents as a group. Illness-related characteristics of the child were not related. Parents of a chronically ill child, especially mothers, reported high levels of anxiety and depression. Awareness about parental anxiety and depression in pediatrics is important as well as targeted interventions.
Akre, Christina; Suris, Joan-Carles
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.…
Nelson, William A.
The dying and death component of the psychiatry clerkship at Dartmouth Medical School is described. The educational objectives and instructional methods were developed to enhance the student's understanding of what terminal patients experience in psychosocial needs and to explore his role and skill in caring for patients in terminal situations.…
Kim, Jeong-Nam; Lee, Seungyoon
Computer-mediated communication, specifically blogs, has expanded the range of the communicative action of patients with chronic disease from information seeking to information forwarding. The authors examine the effects of these 2 types of communicative action on perceived affective and physical coping outcomes. Using a survey dataset of 254 chronic disease patients, the authors tested 2 models using structural equation modeling: first, the effects of communicative action about chronic illness on coping outcomes; and second, the mediating role of emotion-focused and problem-focused coping processes. Findings indicate overall positive effects of communicative action on coping processes and outcomes, yet with different magnitudes of effects depending on the dimensions of communication behavior, the coping process, and outcome. Implications for patients and health care providers are discussed.
A clinically informative behavioral literature on chronic fatigue syndrome (CFS) and fibromyalgia (FM) has emerged over the past decade. The purpose of this article is to (a) define these conditions and their less severe counterparts, i.e., unexplained chronic fatigue (UCF) and chronic widespread pain; (b) briefly review the behavioral theory and intervention literature on CFS and FM; and (c) describe a user-friendly clinical model of assessment and intervention for these illnesses. The assessments described will facilitate understanding of the somewhat unusual and puzzling somatic presentations that characterize these patients. Using an individualized cognitive-behavioral approach the mental health clinician can offer significant help to these often stigmatized and medically underserved patients.
Shruthi, R.; Pundarikaksha, H.P.; Nagesh, G.N.; Tushar, T.J.
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
Whyte, D A
Chronic illness in childhood affects family functioning, and professional support is required when the child is being cared for at home. The focus of concern for this study is the nursing contribution to the support of the family. A longitudinal ethnographic study of the experience of four families caring for a child with cystic fibrosis provided data. Analysis of the four case studies provides insight to the effect of cystic fibrosis on family interaction. The genetic aspects and the life-threatening nature of the illness are seen to have a profound effect on the parents' lives. The experience of crisis and the chronic burden of care are described. The context of long-term care requires the nurse to share the illness trajectory with the families and to help family members to travel it together. This is seen to require a high level of interpersonal skill and considerable emotional investment. The issues for nursing are examined. The research arose from practice, and it contributes to theoretical explanation of nursing interaction, and the relationship of systems thinking to understanding of the nursing situation. The case for the development of family nursing practice to meet contemporary health care needs is argued.
Vassilev, Ivaylo; Rogers, Anne; Todorova, Elka; Kennedy, Anne; Roukova, Poli
The shift from social democratic to a neoliberal consensus in modern welfare capitalist states is characterised by an emphasis on individual responsibility, consumer choice, market rationality and growing social inequalities. There has been little exploration of how neoliberalism has shaped the environment within which chronic illness is experienced and managed. This article explores the different articulations of neoliberalism manifest in the arena of personal illness management in Bulgaria and the UK. People with type 2 diabetes discussed their experiences in terms of struggling with diet, diabetes as a personal failure, integrating illness management and valued activities, and the trustworthiness of the healthcare system. The UK narratives were framed within an individual responsibility discourse while in Bulgaria lack of resources dominated discussions, which were framed as structurally generated and unrelated to individual capabilities and choices. Respondents faced personal management challenges related to consumer and healthcare market failures in both countries. Differences in market regulation and emerging stakeholder and interest coalitions influenced users' expectations and their navigation and adaption to market failures in managing their everyday illnesses. The UK and Bulgarian articulations of neoliberalism can be described differently: the first as a logic of managed choice and the second as a logic of unmanaged consumerism.
The purpose of this survey was to assess the relationship between participation in a bilingual therapeutic performance choir and the reported quality of life for persons living with a chronic psychiatric illness. The participants were 16 volunteers who ranged in age from 32-65, had a diagnosis of a major mental illness, and were members of an existing choir within a psychiatric outpatient department of a large urban general hospital. Participants completed a self-reported quality of life questionnaire designed by the researcher using Likert scales, a check list, and qualitative questions. Results demonstrated that aspects of participants' lives that they perceived were most positively affected by choir membership included self-esteem, emotional expression, mood alteration, coping with stress, comfort level within in the group, and the establishment of a regular routine. Implications for the use of choirs as a therapeutic medium and limitations of the study were discussed.
In this article I examine how young adults used social comparisons in research interviews about their experiences of chronic illness. The interviews were originally conducted not only to provide data for academic analysis but also to generate experiential accounts for publication online as part of an Internet-based health information resource for patients, professionals, and the public wanting to learn about people's real-life experiences of illness in the United Kingdom. Through secondary analysis of these data, I show how the young adults used various social comparisons to represent themselves and their experiences to the target audience. Two new concepts-analogues and foils-are introduced to describe how the young adults likened themselves to, and contrasted themselves with, different reference groups in their accounts. Through these and related strategies, they created positive renditions of their experiences for the audience, helping to inform and support others in the process.
In this article I examine how young adults used social comparisons in research interviews about their experiences of chronic illness. The interviews were originally conducted not only to provide data for academic analysis but also to generate experiential accounts for publication online as part of an Internet-based health information resource for patients, professionals, and the public wanting to learn about people’s real-life experiences of illness in the United Kingdom. Through secondary analysis of these data, I show how the young adults used various social comparisons to represent themselves and their experiences to the target audience. Two new concepts—analogues and foils—are introduced to describe how the young adults likened themselves to, and contrasted themselves with, different reference groups in their accounts. Through these and related strategies, they created positive renditions of their experiences for the audience, helping to inform and support others in the process. PMID:25281241
Xu, Gaosi; Yan, Wenjun; Li, Jingzhen
Nonthyroidal illness syndrome (NTIS) is widely found in the patients with chronic kidney disease (CKD) or critical illness. However, the exact pathogenesis and reasonable treatment remain unclear. To identify suitable studies for inclusion in present review, a search for articles using PubMed search engine with combined terms: (thyroid OR hypothyroidism OR hyperthyroidism OR triiodothyronine) AND (glomerulonephritis OR chronic kidney disease OR chronic renal failure OR end stage renal disease OR hemodialysis OR peritoneal dialysis OR kidney transplantation OR renal transplantation) was performed. The bibliographies of relevant articles were also hand searched. The search was updated on November 8, 2013. Mechanisms for the alternations of thyroid hormone concentrations in NTIS are complicated. Inflammatory cytokines and oxidative stress may play pivotal roles in the pathogenesis of NTIS in patients with CKD. It was controversial whether CKD patients with NTIS should be treated with thyroid hormone replacement. N-Acetyl cysteine or sodium bicarbonate may negatively regulate the progress of micro-inflammation in CKD. Large-scale, multi-centered randomized controlled trials should be conducted to verify the NTIS hypothesis in CKD patients.
Rahman, Md. Mizanur; Gilmour, Stuart; Saito, Eiko; Sultana, Papia; Shibuya, Kenji
Background Bangladesh has a high proportion of households incurring catastrophic health expenditure, and very limited risk sharing mechanisms. Identifying determinants of out-of-pocket (OOP) payments and catastrophic health expenditure may reveal opportunities to reduce costs and protect households from financial risk. Objective This study investigates the determinants of high healthcare expenditure and healthcare- related financial catastrophe. Methods A cross-sectional household survey was conducted in Rajshahi city, Bangladesh, in 2011. Catastrophic health expenditure was estimated separately based on capacity to pay and proportion of non-food expenditure. Determinants of OOP payments and financial catastrophe were estimated using double hurdle and Poisson regression models respectively. Results On average households spent 11% of their total budgets on health, half the residents spent 7% of the monthly per capita consumption expenditure for one illness, and nearly 9% of households faced financial catastrophe. The poorest households spent less on health but had a four times higher risk of catastrophe than the richest households. The risk of financial catastrophe and the level of OOP payments were higher for users of inpatient, outpatient public and private facilities respectively compared to using self-medication or traditional healers. Other determinants of OOP payments and catastrophic expenses were economic status, presence of chronic illness in the household, and illness among children and adults. Conclusion Households that received inpatient or outpatient private care experienced the highest burden of health expenditure. The poorest members of the community also face large, often catastrophic expenses. Chronic illness management is crucial to reducing the total burden of disease in a household and its associated increased risk of level of OOP payments and catastrophic expenses. Households can only be protected from these situations by reducing the health
Davis, Mary C; Affleck, Glenn; Zautra, Alex J; Tennen, Howard
Action theory proposes that individuals actively shape and then respond to their environments, highlighting the role of stable person characteristics in the development and maintenance of life's interpersonal difficulties. In this study, the authors adopt the action perspective in their examination of predictors of daily interpersonal events among chronic pain patients with rheumatoid arthritis. They probe the extent to which stable symptoms of illness explained between-person variation, and fluctuating symptoms explain day-to-day variation in both positive and negative events. Their evaluation of patients' daily diary reports indicate that between-person differences accounted for more variance in the occurrence of positive events relative to negative events (48% vs. 31%, respectively). Likewise, between-person factors accounted for more variance in appraisals of positive compared to negative events across relationship domains. Both intractable illness symptoms and disability, and daily fluctuations in pain and fatigue, were only weakly related to patients' reports of their interpersonal experiences. Consistent with action theory, these results suggest that stable person characteristics are strongly related to daily stressors and particularly daily positive events in pain patients, but still account for less than 50% of the variance in events and their appraisals. In contrast, elevations in illness-related features, both between individuals and within individuals from day-to-day, are not robust predictors of positive or negative social exchanges. These findings point to the value of capturing the experiences of individuals intensively over time, an approach that can help to elaborate the contributions of both stable factors and circumstance in shaping social contexts in chronic illness.
Pinto, Juliana Maria de Sousa; Martín-Nogueras, Ana; Nations, Marilyn
This qualitative study explores the illness experiences, the efficacy of pulmonary rehabilitation as perceived by patients with chronic obstructive pulmonary disease (COPD) and their rationale for improvements in health. 23 patients participated in a daily, three-month home-based pulmonary rehabilitation. A pre-post self-perceived assessment of efficacy was conducted. Semi-structured interviews, illness narratives and participant-observation provided a "dense description" of patients' lived-experience before and after the program. Interviews and narratives were tape-recorded, transcribed and coded. Qualitative data was subjected to "thematic content analysis" and "contextualized semantic interpretation". Patients compare functional status before and after falling ill, experience loss, stigma and depression, describe health improvements and judge the pulmonary rehabilitation's efficacy. Giving voice to chronically-ill patients, as individuals, is needed. To reduce clinical conflicts, health professionals should encourage illness narratives and value their patients' lived-experience.
Weinert, Clarann; Cudney, Shirley; Hill, Wade
The study's purpose was to examine retention factors in a computer intervention with 158 chronically ill rural women. After a 22-week intervention, 18.9% of the women had dropped out. A Cox regression survival analysis was performed to assess the effects of selected covariates on retention. Reasons for dropping out were tallied and categorized. Major reasons for dropping out were as follows: lack of time, decline in health status, and nonparticipation in study activities. Four covariates predicted survival time: level of computer skills, marital status, work outside the home, and impact of social events on participants' lives. Retention-enhancing strategies are suggested for implementation.
Hirsch, Jameson K; Sirois, Fuschia M
Fatigue is a debilitating symptom of chronic illness that is deleteriously affected by perceived stress, a process particularly relevant to inflammatory disease. Hopefulness, a goal-based motivational construct, may beneficially influence stress and fatigue, yet little research has examined these associations. We assessed the relation between hope and fatigue, and the mediating effect of stress, in individuals with fibromyalgia, arthritis, and inflammatory bowel disease. Covarying age, sex, and pain, stress partially mediated the association between hope and fatigue; those with greater hope reported less stress and consequent fatigue. Therapeutically, bolstering hope may allow proactive management of stressors, resulting in less fatigue.
Kreiner, Meta J.; Hunt, Linda M.
Preventive health care has become prominent in clinical medicine in the United States, emphasizing risk assessment and control, rather than addressing the signs and symptoms of pathology. Current clinical guidelines, reinforced by evidence-based decision aids and quality of care assessment, encourage clinicians to focus on maintaining rigid test thresholds which are based on population norms. While achieving these goals may benefit the total population, this may be of no benefit or even harmful to individual patients. In order to explore how this phenomenon is manifest in clinical care, and consider some factors that promote and sustain this trend, we analyze observations of over 100 clinical consultations, and open-ended interviews with 58 primary care clinicians and 70 of their patients. Both clinicians and patients equated at-risk states with illness, and viewed the associated interventions not as prevention, but as treatment. This conflation of risk and disease redefines clinical success such that reducing the threat of anticipated future illness requires acceptance of aggressive treatments and any associated adverse effects in the present. While the expanding emphasis on preventive medicine may improve the health profile of the total population, the implications of these innovations for the well-being of individual patients merits careful reconsideration. PMID:24372285
Coleman, Katie; Mattke, Soeren; Perrault, Patrick J; Wagner, Edward H
In the past 10 years, a wide spectrum of chronic care improvement interventions has been tried and evaluated to improve health outcomes and reduce costs for chronically ill individuals. On one end of the spectrum are disease-management interventions--often organized by commercial vendors--that work with patients but do little to engage medical practice. On the other end are quality-improvement efforts aimed at redesigning the organization and delivery of primary care and better supporting patient self-management. This qualitative review finds that carve-out disease management interventions that target only patients may be less effective than those that also work to redesign care delivery. Imprecise nomenclature and poor study design methodology limit quantitative analysis. More innovation and research are needed to understand how disease-management components can be more meaningfully embedded within practice to improve patient care.
Van Staa, AnneLoes; Jedeloo, Susan; Latour, Jos M; Trappenburg, Margo J
Abstract Background Adolescents with chronic conditions are major users of paediatric hospitals, but seldom participate in the evaluation of services or in research. Little is known about the usefulness of the participatory approach in adolescent health research. Objective To evaluate the feasibility, benefits and limitations of a participatory research (PR) project involving chronically ill adolescents as co‐researchers. Design, setting and participants Nine adolescents, aged 15–17 years, acted as co‐researchers in a hospital‐based PR project. They co‐developed an interview protocol and during a disco party held for this purpose interviewed each other and 25 fellow patients (12–19 years). They provided advice on the draft report and participated in the dissemination of the results, but were not involved in the design of the project or analysis of results. Results Involving adolescents in participatory health research was feasible and appreciated by researchers and youth alike, but had its drawbacks too. The peer‐research attracted few participants, the interviews lacked depth and did not yield substantial new insights. Maintaining a high level of participation of the chronically ill co‐researchers also proved difficult. Conclusions Adolescents with chronic conditions like to have a say in the design and evaluation of hospital services. But their participation as co‐researchers demands ample resources from all parties involved without automatically improving research quality. PR does not seem the most effective and efficient way to make services more responsive. We therefore recommend further exploration of other creative and sustainable ways for involving youth in health‐care service development and innovation. PMID:19682098
Background The Wagner Model provides a framework that can help to facilitate health system transition towards a chronic care oriented model. Drawing on elements of this framework as well as health policy related to patient centred care, we describe the health needs of patients with chronic illness and compare these with services which should ideally be provided by a patient-centred health system. This paper aims to increase understanding of the challenges faced by chronically ill patients and family carers in relation to their experiences with the health care system and health service providers. Method We interviewed patients, carers and health care professionals (HCPs) about the challenges faced by people living with complicated diabetes, chronic heart failure or chronic obstructive pulmonary disease. Results Patients indicated that they had a range of concerns related to the quality of health care encounters with health care professionals (HCPs), with these concerns being expressed as needs or wants. These included: 1) the need for improved communication and information delivery on the part of HCPs; 2) well organised health services and reduced waiting times to see HCPs; 3) help with self care; 4) greater recognition among professionals of the need for holistic and continuing care; and 5) inclusion of patients and carers in the decision making processes. Conclusions In order to address the challenges faced by people with chronic illness, health policy must be more closely aligned with the identified needs and wants of people affected by chronic illness than is currently the case. PMID:23819721
Kaushansky, Daniel; Cox, Jarad; Dodson, Chaka; McNeeley, Miles; Kumar, Sinthu; Iverson, Ellen
Objectives This qualitative study examines how and why adolescents living with visible and invisible chronic illnesses choose to share their condition with individuals within their social environments. Methods A sample of 25 adolescents were recruited from five subspecialty services: Spina bifida, rheumatology, cardiology, cystic fibrosis, and renal transplant/dialysis. Recruits completed a semi-structured interview designed to explore: (1) to whom adolescents disclose their conditions, (2) motivation and conditions under which they disclose, (3) content of disclosure, and (4) barriers to disclosure. Results Family members closely connected to treatment or management are most likely to be primary targets of disclosure. Regardless of social network size, respondents disclosed their illness to few peers. Common reasons for disclosure were perceived trust and shared experience with illness and disability. Reasons for withholding disclosure include perceived fear of rejection, pity, and perceptions of being seen as vulnerable or different. Discussion Disclosure was found to be influenced by (a) the visibility of a condition, (b) the anticipated response from the recipient, (c) practical needs, and (d) a decision that disclosure is justified. These findings inform clinical practice, warrant the need for further study, and insinuate practical solutions to combat the socio-emotional impact of nondisclosure among adolescents.
Farrell, Joan; Cope, Scott Brooks; Cooper, James H; Mathias, Leigh
An experimental two-group comparison pilot study of forty chronically ill hospitalized children was carried out at Wolfson Children's Hospital in Jacksonville, Florida. Three Godly Play interventions were given to participants in the experimental group. Children in the control group did not participate but received a fairy tale book as a control. The sample was evenly distributed with twenty (20) males and twenty (20) females. Ages ranged from six (6) to fifteen (15) years and all participants were chronically ill. Five (5) variables were studied. Of the five (5), three (3) showed significant differences before and after Godly Play: the Staic-Trait Anxiety Scale (p = .049), the Children's Depression Inventory (p = .011), and the McBride Spirituality Assessment (p = .033). A marginal difference in parent satisfaction with hospital care of children in the experimental and control groups was also determined (p = .058). Findings suggest that Godly Play had a significant effect on anxiety, depression, and spirituality of children and support the idea that the parents of children who participated in Godly Play were more satisfied with hospital care than those parents whose children did not engage in Godly Play.
Holden, Richard J; Valdez, Rupa S; Schubert, Christiane C; Thompson, Morgan J; Hundt, Ann S
Human factors/ergonomics recognises work as embedded in and shaped by levels of social, physical and organisational context. This study investigates the contextual or macroergonomic factors present in the health-related work performed by patients. We performed a secondary content analysis of findings from three studies of the work of chronically ill patients and their informal caregivers. Our resulting consolidated macroergonomic patient work system model identified 17 factors across physical, social and organisational domains and household and community levels. These factors are illustrated with examples from the three studies and discussed as having positive, negative or varying effects on health and health behaviour. We present three brief case studies to illustrate how macroergonomic factors combine across domains and levels to shape performance in expected and unexpected ways. Findings demonstrate not only the importance of context for patients' health-related activities but also specific factors to consider in future research, design and policy efforts. Practitioner Summary: Health-related activities of patients are embedded in and shaped by levels of social, physical and organisational context. This paper combined findings from three studies to specify 17 contextual or macroergonomic factors in home- and community-based work systems of chronically ill patients. These factors have research, design and policy implications.
Wirlach-Bartosik, S; Schubert, M T; Freilinger, M; Schober, E
The present study is based on the assumption of an interaction between family functioning and chronic illness. Using a systemic approach, the intra-familial situation of families with a diabetes-affected child is examined. 44 families were evaluated using a family diagnostic instrument ("Familienbögen") and compared with 31 control families with a healthy child. Furthermore, the study looked at the influence of the level of family functioning on glycemic control, as measured by HbA1c values, and vice versa. Families with a child affected by diabetes showed significantly more dysfunctional domains and higher discrepancies of the ratings in the family diagnostic instrument (p < 0.05). Unexpectedly, no significant interaction between family functioning and glycemic control was found. Poor glycemic control therefore did not have any negative effects on the family dynamics, in fact, the opposite was often the case. Also, the relationship between siblings was judged more positively when one of the siblings was chronically ill (p < 0.05). The results show that despite the fact that diabetes in children may lead to an increase in impairment of intra-familial dynamics, it may, at the same time, offer opportunities for an improvement of family relationships. However, if physiological parameters deteriorate in the child (poor glycemic control), family problems seem to become less important. Success in the treatment of diabetes patients should therefore not only be measured by the quality of glycemic control, but also by considering psychological factors and aspects of family dynamics.
Rich, Antonia; Brandes, Kim; Mullan, Barbara; Hagger, Martin S
Social-cognitive models such as the theory of planned behavior have demonstrated efficacy in predicting behavior, but few studies have examined the theory as a predictor of treatment adherence in chronic illness. We tested the efficacy of the theory for predicting adherence to treatment in chronic illness across multiple studies. A database search identified 27 studies, meeting inclusion criteria. Averaged intercorrelations among theory variables were computed corrected for sampling error using random-effects meta-analysis. Path-analysis using the meta-analytically derived correlations was used to test theory hypotheses and effects of moderators. The theory explained 33 and 9 % of the variance in intention and adherence behavior respectively. Theoretically consistent patterns of effects among the attitude, subjective norm, perceived behavioral control, intention and behavior constructs were found with small-to-medium effect sizes. Effect sizes were invariant across behavior and measurement type. Although results support theory predictions, effect sizes were small, particularly for the intention-behavior relationship.
Årestedt, Liselott; Benzein, Eva; Persson, Carina; Rämgård, Margareta
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
Årestedt, Liselott; Benzein, Eva; Persson, Carina; Rämgård, Margareta
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.
Han, Liang; Li, Man; Li, Zhe; LaVinka, Pamela Colleen; Sun, Shuohao; Tang, Zongxiang; Park, Kyoungsook; Caterina, Michael J.; Ren, Ke; Dubner, Ronald; Wei, Feng; Dong, Xinzhong
SUMMARY The peripheral terminals of primary nociceptive neurons play an essential role in pain detection mediated by membrane receptors like TRPV1, a molecular sensor of heat and capsaicin. However, the contribution of central terminal TRPV1 in the dorsal horn to chronic pain has not been investigated directly. Combining primary sensory neuron-specific GCaMP3 imaging with a trigeminal neuropathic pain model, we detected robust neuronal hyperactivity in injured and uninjured nerves in the skin, soma in trigeminal ganglion, and central terminals in the spinal trigeminal nucleus. Extensive TRPV1 hyperactivity was observed in central terminals innervating all dorsal horn laminae. The central terminal TRPV1 sensitization was maintained by descending serotonergic (5-HT) input from the brainstem. Central blockade of TRPV1 or 5-HT/5-HT3A receptors attenuated central terminal sensitization, excitatory primary afferent inputs, and mechanical hyperalgesia in the territories of injured and uninjured nerves. Our results reveal new central mechanisms facilitating central terminal sensitization underlying chronic pain. PMID:24462040
Kim, Yu Shin; Chu, Yuxia; Han, Liang; Li, Man; Li, Zhe; Lavinka, Pamela Colleen; Sun, Shuohao; Tang, Zongxiang; Park, Kyoungsook; Caterina, Michael J; Ren, Ke; Dubner, Ronald; Wei, Feng; Dong, Xinzhong
The peripheral terminals of primary nociceptive neurons play an essential role in pain detection mediated by membrane receptors like TRPV1, a molecular sensor of heat and capsaicin. However, the contribution of central terminal TRPV1 in the dorsal horn to chronic pain has not been investigated directly. Combining primary sensory neuron-specific GCaMP3 imaging with a trigeminal neuropathic pain model, we detected robust neuronal hyperactivity in injured and uninjured nerves in the skin, soma in trigeminal ganglion, and central terminals in the spinal trigeminal nucleus. Extensive TRPV1 hyperactivity was observed in central terminals innervating all dorsal horn laminae. The central terminal TRPV1 sensitization was maintained by descending serotonergic (5-HT) input from the brainstem. Central blockade of TRPV1 or 5-HT/5-HT3A receptors attenuated central terminal sensitization, excitatory primary afferent inputs, and mechanical hyperalgesia in the territories of injured and uninjured nerves. Our results reveal central mechanisms facilitating central terminal sensitization underlying chronic pain.
Krauskopf, Katherine; Federman, Alex D; Kale, Minal S; Sigel, Keith M; Martynenko, Melissa; O'Conor, Rachel; Wolf, Michael S; Leventhal, Howard; Wisnivesky, Juan P
Almost half of patients with COPD do not adhere to their medications. Illness and medication beliefs are important determinants of adherence in other chronic diseases. Using the framework of the Common Sense Model of Self-Regulation (CSM), we determined associations between potentially modifiable beliefs and adherence to COPD medications in a cohort of English- and Spanish-speaking adults with COPD from New York and Chicago. Medication adherence was assessed using the Medication Adherence Report Scale. Illness and medication beliefs along CSM domains were evaluated using the Brief Illness Perception Questionnaire (B-IPQ) and the Beliefs about Medications Questionnaire (BMQ). Unadjusted analysis (with Cohen's d effect sizes) and multiple logistic regression were used to assess the relationship between illness and medication beliefs with adherence. The study included 188 participants (47% Black, 13% Hispanics); 109 (58%) were non-adherent. Non-adherent participants were younger (p < 0.001), more likely to be Black or Hispanic (p = 0.001), to have reported low income (p = 0.02), and had fewer years of formal education (p = 0.002). In unadjusted comparisons, non-adherent participants reported being more concerned about their COPD (p = 0.011; Cohen's d = 0.43), more emotionally affected by the disease (p = 0.001; Cohen's d = 0.54), and had greater concerns about COPD medications (p < 0.001, Cohen's d = 0.81). In adjusted analyses, concerns about COPD medications independently predicted non-adherence (odds ratio: 0.52, 95% confidence interval: 0.36-0.75). In this cohort of urban minority adults, concerns about medications were associated with non-adherence. Future work should explore interventions to influence patient adherence by addressing concerns about the safety profile and long-term effects of COPD medications.
Hudnell, H Kenneth
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
Peng, Meng-Ting; Liu, Chien-Ting; Hung, Yu-Shin; Kao, Chen-Yi; Chang, Pei-Hung; Yeh, Kun-Yun; Wang, Hung-Ming; Lin, Yung-Chang; Chou, Wen-Chi
This study aimed to assess the utility of the Eastern Cooperative Oncology Group (ECOG) performance scale assessments on days 1 and 8 of palliative care, as well as scale change between these assessments, as prognostic tools for patients with terminally ill cancer. A total of 2392 patients with terminally ill cancer who received palliative care between January 2006 and December 2011 at a single medical center were analyzed. Our study showed that the ECOG scale is a useful prognostic tool to predict life expectancy in patients with terminally ill cancer. The ECOG scale assessments at different time points under palliative care were independent predictors for overall survival. The combined ECOG scale assessments on days 1 and 8 predicted survival more precisely than using day 1 ECOG scale assessment alone.
Kim, Sunghee; Shin, Gisoo
The purpose of this study was to develop a simulation-based training program for people living with HIV (PLWH) as peer caregivers who would take care of terminally ill, HIV-infected patients. We used qualitative research methods and standardized patients to explore the meaning of caring for patients as peer caregivers. Study participants included 32 patients registered as PLWH at the South Korea Federation for HIV/AIDS. The meanings of peer caregiving were categorized into four dimensions: physical, psychological, relational, and economic. Our study had benefits in knowledge acquisition for caregivers as well as care recipients, empathy with HIV-infected care recipients, improvement in self-esteem and social participation, and financial self-sufficiency to enable independent living for caregivers. The simulation training program for PLWH peer caregivers for terminally ill HIV-infected patients demonstrated value, for both PLWH caregivers and terminally ill HIV-infected patients in South Korea, to improve the quality of care.
Woodward, R V; Broom, D H; Legge, D G
This paper examines doctors' and patients' views on the consequences of an increasingly common symptomatic diagnosis, chronic fatigue syndrome (CFS). Two studies were conducted: the first comprised interviews with 20 general practitioners; the second was a longitudinal study, comprising three interviews over a period of 2 years with 50 people diagnosed with CFS. Contrasts were apparent between doctors' practical and ethical concerns about articulating a diagnosis of CFS and patients' experiences with and without such a diagnosis. Seventy per cent of the doctors were reluctant to articulate a diagnosis of CFS. They felt constrained by the scientific uncertainty regarding its aetiology and by a concern that diagnosis might become a disabling self-fulfilling prophecy. Patients, by contrast, highlighted the enabling aspects of a singular coherent diagnosis and emphasized the negative effects of having no explanation for their problems. PMID:7629762
Sorkness, Christine A.
More than 4.5 million people worldwide live with an implanted pacemaker, including >3 million in the USA alone. Also, >0.8 million people in the USA have an implantable cardioverter defibrillator (ICD). Knowing the principles of managing these devices towards the end of life is important, as the interruption of their function may have serious consequences. This article provides health care providers who are not specialized in cardiac electrophysiology with an introduction to the general principles of management of pacemakers or ICD devices towards the end of life, with a suggested algorithm for approaching this process. Also discussed are pertinent ethical and practical considerations in deciding on and implementing a management strategy for these devices during terminal illnesses.
Dobríková, Patricia; Pčolková, Dušana; AlTurabi, Layla Khalil; West, Daniel J
This study examines the effect of 2 indicators on quality of life (QOL): social support and meaning of life for terminally ill patients. These 2 indicators are very important from a psychological and spiritual point of view. The findings suggest that there is a statistically significant correlation between meaning of life and QOL (r = .610, P < .001). Results have also demonstrated that more frequent patient visits increase the sense of life fulfillment for dying patients. A significant relationship exists in survival of life meaningfulness and satisfaction with social support. In conclusion, experiencing one's life as meaningful is positively related to the well-being for dying patients. Social support provided by a close relative had a positive influence on the patient's meaning of life and overall life satisfaction.
LiPuma, Samuel H; DeMarco, Joseph P
As currently practiced, the use of continuous sedation until death (CSD) is controlled by clinicians in a way that may deny patients a key choice in controlling their dying process. Ethical guidelines from the American Medical Association and the American Academy of Pain Medicine describe CSD as a "last resort," and a position statement from the American Academy of Hospice and Palliative Medicine describe it as "an intervention reserved for extreme situations." Accordingly, patients must progress to unremitting pain and suffering and reach a last-resort stage before the option to pursue CSD is considered. Alternatively, we present and defend a new guideline in which decisionally capable, terminally ill patients who have a life expectancy of less than six months may request CSD before being subjected to the refractory suffering of a treatment of "last resort."
Maltoni, Marco; Miceli, Rosalba; Mariani, Luigi; Caraceni, Augusto; Amadori, Dino; Nanni, Oriana
Purpose. An existing and validated palliative prognostic (PaP) score predicts survival in terminally ill cancer patients based on dyspnea, anorexia, Karnofsky performance status score, clinical prediction of survival, total WBC, and lymphocyte percentage. The PaP score assigns patients to three different risk groups according to a 30-day survival probability—group A, >70%; group B, 30%–70%; group C, <30%. The impact of delirium is known but was not incorporated into the PaP score. Materials and Methods. Our aim was to incorporate information on delirium into the PaP score based on a retrospective series of 361 terminally ill cancer patients. We followed the approach of “validation by calibration,” proposed by van Houwelingen and later adapted by Miceli for achieving score revision with inclusion of a new variable. The discriminating performance of the scores was estimated using the K statistic. Results. The prognostic contribution of delirium was confirmed as statistically significant (p < .001) and the variable was accordingly incorporated into the PaP score (D-PaP score). Following this revision, 30-day survival estimates in groups A, B, and C were 83%, 50%, and 9% for the D-PaP score and 87%, 51%, and 16% for the PaP score, respectively. The overall performance of the D-PaP score was better than that of the PaP score. Conclusion. The revision of the PaP score was carried out by modifying the cutoff values used for prognostic grouping without, however, affecting the partial scores of the original tool. The performance of the D-PaP score was better than that of the PaP score and its key feature of simplicity was maintained. PMID:22042788
Frommelt, K H
This study sought to determine the effectiveness of an education program on nurses' attitudes toward caring for terminally ill persons and their family members. The program, based on the hospice concept of care, included a didactic section based on Kubler-Ross' stages of death and dying, and a role-play model designed by the researcher. Data were collected from 34 licensed nurses, aged 18 to 65, practicing in the midwestern United States. The Frommelt Attitude Toward Care of the Dying Scale (FATCOD) was designed by the researcher to assess nurses' attitudes. The FATCOD was found to be a valid and reliable tool. All nurses completed the tool before and after the education program (pre-test, post-test). Compared by a t-test, the scores for the nurses were significantly higher after participation in the educational program. The t-value was found to be 2.97, significant at the less than 0.01 level, 2-tailed probability = 0.006. These findings support the hypothesis that nurses have a more positive attitude toward caring for terminally ill persons and their family members after participation in the program, than the same nurses had before participating in the program. Demographic information including age, years of experience in nursing, highest degree held, basic type of nursing preparation and previous education on death and dying were analyzed to determine their relationship to the nurses' attitudes. The only information which demonstrated any significant relationship to the nurses' attitudes was that of previous education on death and dying. These were computed by an analysis of variance (ANOVA) F = 3.22, F prob = 0.04, significant at less than 0.05 level.(ABSTRACT TRUNCATED AT 250 WORDS)
Glebocka, A; Gawor, A; Ostrowski, F
Euthanasia is an issue that generates an extensive social debate. Euthanasia is generally classified as either active or passive. The former is usually defined as taking specific steps to cause the patient's death, while the latter is described as withdrawal of medical treatment with the deliberate intention of bringing the patient's life to an end. The dispute on euthanasia involves a multitude of aspects including religious, legal, cultural, ethical, medical, and spiritual issues. The purpose of the present study was to examine the views of medical professionals toward the highly controversial issue of euthanasia. Accordingly, the research has been conducted among a group of Polish nurses and physicians working in Intensive Care and Oncology Units. Their views have been compared to those of the control group, which included the members of the general public, who do not work in medical profession. It was expected that the education and training and the day-to-day exposure to vegetative patients might influence the views of medical personnel concerning euthanasia. The research demonstrated that the members of all groups supported liberal views. Conservative views were not popular among the respondents. The physicians turned out to be the least conservative group. The survey has also demonstrated that there is a broad consensus that informational and psychological support should be provided to terminally ill patients and their relatives. The attitude toward the passive form of euthanasia seems to have broad support. In particular doctors tend to approve this form of bringing a terminally ill patient's life to an end. The active euthanasia is regarded with much less favor and physicians, in particular, appear to disapprove of it.
Morita, Tatsuya; Sakaguchi, Yukihiro; Hirai, Kei; Tsuneto, Satoru; Shima, Yasuo
A desire for death and requests to hasten death are major topics in recent medical literature. The aim of this study was to clarify the bereaved family-reported incidence and reasons for desiring death and requests to hasten death during the whole course of terminally ill cancer patients receiving specialized palliative care in Japan. A nationwide questionnaire survey of 500 primary caregivers yielded a total of 290 responses (effective response rate, 62%). Sixty-two (21%) families reported that the patients had expressed a desire to die, and 29 (10%) families reported that the patients had requested that death be hastened. The major reasons for desiring death and requests to hasten death were: burden on others, dependency, meaninglessness, unable to pursue pleasurable activities, general malaise, pain, dyspnea, concerns about future distress, and wish to control the time of death. No intolerable physical symptoms were reported in 32% and 28% of the patients who desired death and those who requested to hasten death, respectively. Concerns about future distress and wishes to control the time of death were significantly more likely to be listed as major reasons for desiring death in patients who requested that death be hastened than those who did not. A desire for death and requests to hasten death are not uncommon in terminally ill cancer patients receiving specialized inpatient palliative care in Japan. More intensive strategies for general malaise, pain, and dyspnea near the end of life, and for feelings of being a burden, meaninglessness, and concerns about future distress would alleviate the serious suffering of patients with a desire for death. However, some patients with a strong wish to control the time of death might not receive benefit from conventional palliative care.
Frings-Dresen, Monique H. W.
Objective To study differences between working and sick-listed chronic repetitive strain injury (RSI) patients in the Netherlands with respect to indices of quality of life and illness perception. Methods In a cross-sectional design, one questionnaire was sent to all 3,250 members of the national RSI patient association. For descriptive purposes, demographics, work status and complaint-related variables such as severity, type, duration, and extent of complaints were asked for. Indices of quality of life were assessed through seven SF-36 subscales (physical (role) functioning, emotional role functioning, social functioning, pain, mental health and vitality). A work-ability estimate and VAS scales were used to assess complaint-related decrease in quality of life. Illness perception was assessed through the brief illness perception questionnaire (IPQ-B). Working patients and sick-listed patients were identified. Tests between the two independent groups were performed and P-values < 0.01 were considered significant. Results Data from 1,121 questionnaires were used. Two-thirds of the respondents worked and one-third were sick-listed. Average duration of complaints was over 5 years in both groups. The sick-listed patients reported significantly more severe and extensive complaints than did the working patients. In addition, sick-listed patients reported significantly poorer mental health, physical (role) functioning, emotional role functioning, pain, vitality, and work-ability. With respect to illness perception, both groups showed the same concerns about their complaints, but sick-listed patients had significantly more distorted perceptions in their emotional response, identity, treatment control, personal control, timeline, and life consequences. Complaint-related decrease in quality of life was 31% in the working patients and 49% in the sick-listed patients. Conclusion The study found a greater number and severe complaints among sick-listed chronic RSI patients and
Jayasinghe, Upali W; Proudfoot, Judith; Barton, Christopher A; Amoroso, Cheryl; Holton, Chris; Davies, Gawaine Powell; Beilby, Justin; Harris, Mark F
Background To study health-related quality of life (HRQOL) in a large sample of Australian chronically-ill patients and investigate the impact of characteristics of patients and their general practices on their HRQOL and to assess the construct validity of SF-12 in Australia. Methods Cross sectional study with 96 general practices and 7606 chronically-ill patients aged 18 years or more using standard SF-12 version 2. Factor analysis was used to confirm the hypothesized component structure of the SF-12 items. SF-12 physical component score (PCS-12) and mental component score (MCS-12) were derived using the standard US algorithm. Multilevel regression analysis (patients at level 1 and practices at level 2) was applied to relate PCS-12 and MCS-12 to patient and practice characteristics. Results There were significant associations between lower PCS-12 or MCS-12 score and poorer general health (10.8 (regression coefficient) lower for PCS-12 and 7.3 lower for MCS-12), low socio-economic status (5.1 lower PCS-12 and 2.9 lower MCS-12 for unemployed, 0.8 lower PCS-12 and 1.7 lower MCS-12 for non-owner-occupiers, 1.0 lower PCS-12 for less well-educated) and having two or more chronic conditions (up to 2.7 lower PCS-12 and up to 1.5 lower MCS-12 than those having a single disease). Younger age was associated with lower MCS-12 (2.2 and 6.0 lower than middle age and older age respectively) but higher PCS-12 (4.7 and 7.6 higher than middle age and older age respectively). Satisfaction with quality of care (regression coefficient = 1.2) and patients who were married or cohabiting (regression coefficient = 0.6) was positively associated with MCS-12. Patients born in non-English-speaking countries were more likely to have a lower MCS-12 (1.5 lower) than those born in Australia. Employment had a stronger association with the quality of life of males than that of females. Those attending smaller practices had lower PCS-12 (1.0 lower) and MCS-12 (0.6 lower) than those attending larger
ABSTRACT INTRODUCTION While the Chronic Care Model (CCM) has been shown to improve the care of patients with chronic illnesses, primary care physicians have been unprepared in its use, and residencies have encountered challenges in introducing it into the academic environment. AIM Our residency program has implemented a diabetes management program modeled on the CCM to evaluate its impact on health outcomes of diabetic patients and educational outcomes of residents. SETTING University-affiliated, community-based family medicine residency program. PROGRAM DESCRIPTION Six residents, two faculty clinicians, and clinic staff formed a diabetes management team. We redesigned the outpatient experience for diabetic patients by incorporating elements of the CCM: multidisciplinary team care through planned and group visits; creation of a diabetes registry; use of guidelines-based flow sheets; and incorporation of self-management goal-setting. Residents received extensive instruction in diabetes management, quality improvement, and patient self-management. PROGRAM EVALUATION We achieved overall improvement in all metabolic and process measures for patients, with the percentage achieving HbA1c, LDL, and BP goals simultaneously increasing from 5.7% to 17.1%. Educational outcomes for residents, as measured by compliance with review of provider performance reports and self-management goal-setting with patients, also significantly improved. DISCUSSION Through a learning collaborative experience, residency programs can successfully incorporate chronic care training for residents while addressing gaps in care for patients with diabetes. PMID:20737237
Wenrich, Marjorie D; Curtis, J Randall; Ambrozy, Donna A; Carline, Jan D; Shannon, Sarah E; Ramsey, Paul G
This study addressed the emotional and personal needs of dying patients and the ways physicians help or hinder these needs. Twenty focus groups were held with 137 individuals, including patients with chronic and terminal illnesses, family members, health care workers, and physicians. Content analyses were performed based on grounded theory. Emotional support and personalization were 2 of the 12 domains identified as important in end-of-life care. Components of emotional support were compassion, responsiveness to emotional needs, maintaining hope and a positive attitude, and providing comfort through touch. Components of personalization were treating the whole person and not just the disease, making the patient feel unique and special, and considering the patient's social situation. Although the levels of emotional support and personalization varied, there was a minimal level, defined by compassion and treating the whole person and not just the disease, that physicians should strive to meet in caring for all dying patients. Participants also identified intermediate and advanced levels of physician behavior that provide emotional and personal support.
Yeung, E W; French, P; Leung, A O
This study explored the expectations and experiences of patients with terminal cancer in a hospice inpatient environment in an attempt to evaluate their quality of life and the impact of the care and services provided. A total of 52 patients terminally ill with cancer from 11 hospice units in Hong Kong participated in the study. Data were collected from patients by devising a Hospice Care Performance Inventory (HCPI), which was an interview schedule consisting of 25 items. The HCPI was developed after a review of the literature on the quality of life experienced by patients with advanced cancer and the aims of hospice units in Hong Kong. Each item was rated by the patient on a Likert scale in terms of its importance and the perceived effectiveness of the care provided. The study identified six issues in which expectations did not seem to match effectiveness. These issues indicated areas in which improvement could be attempted to enhance the quality of life for the patients. The most important was maximizing self-care and mobility. Two issues were identified in which effectiveness was high and importance to the patient relatively low. One of these issues was pain management, and the other was spiritual care.
Coverdale, J H; Bayer, T L; McCullough, L B; Chervenak, F A
Treatment of women patients with chronic mental illness who are at risk of unwanted pregnancies presents ethical challenges to the clinician who wishes to respect the patient's autonomy while also helping her avert the potential adverse consequences of unwanted pregnancy. The clinician who simply allows the patient to continue at risk or coerces her into using contraception may not have adequately considered the variable nature of the patient's autonomy. The authors suggest that the clinician should assess and treat conditions underlying the patient's variable impairment of autonomy to maximize her ability to participate in family planning decisions. Case examples are used to illustrate assessment of patients' decision-making capacity, development of family planning approaches that respect patients' autonomy, and use of a newly available contraceptive implant.
Taylor, Judy; Braunack-Mayer, Annette; Cargo, Margaret; Larkins, Sarah; Preston, Robyn
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.
Lynn, Joanne; Goldstein, Nathan E
Patients with eventually fatal illnesses often receive routine treatments in response to health problems rather than treatments arising from planning that incorporates the patient's situation and preferences. This paper considers the case of an elderly man with advanced lung disease who had mechanical ventilation and aggressive intensive care, in part because his nursing home clinicians did not complete an advance care plan and his do-not-resuscitate order did not accompany him to the hospital. The errors that led to his hospitalization and his unwanted treatment there demonstrate how the ordinary lack of advance care planning is deleterious for patients who are nearing the end of life. We discuss serious, recurring, and generally unnoticed errors in planning for care near the end of life and possible steps toward improvement. Repairing these shortcomings will require quality improvement and system redesign efforts, methods familiar from patient safety initiatives. Reliable improvement will also require making it unacceptable for clinicians to fail to plan ahead for care during fatal chronic illness.
Vassilev, Ivaylo; Rogers, Anne; Blickem, Christian; Brooks, Helen; Kapadia, Dharmi; Kennedy, Anne; Sanders, Caroline; Kirk, Sue; Reeves, David
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.
Yurkovich, E; Smyer, T; Dean, L
This grounded theory study compared the definition of health by clients of two rural mental health day treatment centres, Big Sky Centre and Montana Centre. Based on an original grounded theory study of seven chronic mentally ill/disabled clients in Big Sky Centre (Yurkovich et al. 1997), the core variable, 'preventing loss of control' and related properties, were validated with nine residents of Montana Centre. While establishing a 'fit' with previous research findings, differences emerged between these two centres. These differences related to the staffs' philosophical approaches in providing treatment to the chronic mentally ill. Big Sky Centre care providers empowered their clients to learn new behaviours from their peers and assume new roles such as newcomer, member and leader. They also encouraged a prosocial attitude, and created a sense of belonging through valued involvement in their treatment. Montana Centre clients were not empowered to try out new behaviours in the treatment environment, or seek social support networks among their peers at the centre, which would foster a sense of belonging. The result was that clients from Montana Centre relied on the formal healthcare system more often than clients from the Big Sky Centre. The competing forces in healthcare today--family members, mental health providers, and insurance or managed care providers--make it easy to lose sight of or fail to gain the client's perspective about their health status and maintenance, particularly as it concerns day treatment centres. The importance of the day treatment centre as a therapeutic community which requires educational processes, innovative nursing practice, and client-centred interventions will be discussed.
Eccleston, Christopher; Fisher, Emma; Law, Emily; Bartlett, Jess; Palermo, Tonya M
Background Psychological therapies have been developed for parents of children and adolescents with a chronic illness. Such therapies include interventions directed at the parent only or at parent and child/adolescent, and are designed to improve parent, child, and family outcomes. This is an updated version of the original Cochrane review published in Issue 8, 2012, (Psychological interventions for parents of children and adolescents with chronic illness). Objectives To evaluate the efficacy of psychological therapies that include parents of children and adolescents with chronic illnesses including painful conditions, cancer, diabetes mellitus, asthma, traumatic brain injury (TBI), inflammatory bowel diseases (IBD), skin diseases, or gynaecological disorders. We also aimed to evaluate the adverse events related to implementation of psychological therapies for this population. Secondly, we aimed to evaluate the risk of bias of included studies and the quality of outcomes using the GRADE assessment. Search methods We searched the Cochrane Central Register of Controlled Trials (CENTRAL), MEDLINE, EMBASE and PsycINFO for randomised controlled trials (RCTs) of psychological interventions that included parents of children and adolescents with a chronic illness. Databases were searched to July 2014. Selection criteria Included studies were RCTs of psychological interventions that delivered treatment to parents of children and adolescents with a chronic illness compared to an active control, waiting list, or treatment as usual control group. Data collection and analysis Study characteristics and outcomes were extracted from included studies. We analysed data using two categories. First, we analysed data by each individual medical condition collapsing across all treatment classes at two time points. Second, we analysed data by each individual treatment class; cognitive behavioural therapy (CBT), family therapy (FT), problem solving therapy (PST) and multisystemic therapy
Qing, Xin; Wimalawansa, Sunil J; Keith, Ingegerd M
Chronic hypoxic pulmonary hypertension (HPH) is characterized by elevated pulmonary arterial pressure (P(PA)), right ventricular hypertrophy (RVH), pulmonary vascular remodeling, pulmonary edema and polycythemia. Currently, there is no safe and effective treatment for HPH. Calcitonin gene-related peptide (CGRP) is the most potent peptide vasodilator discovered thus far. We previously demonstrated that exogenous CGRP reversed HPH in rats. However, the CGRP1 receptor antagonist CGRP(8-37) and smaller inhibitory C-terminal CGRP fragments that can be formed by enzymatic cleavage in vivo may compromise the beneficial effects of endogenous or exogenous CGRP. We here examine the agonistic efficacy of N-terminal rat alpha-CGRP peptides containing the disulfide bridge (Cys(2)-Cys(7)) with amidated C-terminal in prevention of HPH. Chronic infusion of CGRP(1-8), CGRP(1-13), or CGRP(1-14) at 7 nmol/h/rat via the right jugular vein during 14 days of hypobaric hypoxia (10% inspired O(2)) significantly decreased the P(PA), RVH and pulmonary arterial medial thickness in comparison with controls, suggesting that these CGRP sequences can mitigate chronic HPH in rats. Systemic pressure was unchanged by infused peptides indicating no carry-over effect. In conclusion, N-terminal CGRP fragments (CGRP(1-8), CGRP(1-13) and CGRP(1-14)) may have a protective role in hypoxic pulmonary hypertension.
based on the PTSD Checklist-Civilian Version using the Diagnostic and Statistical Manual of Mental Disorders, 4th Edition criteria. Chronic Multisymptom...PTSD Checklist-Civilian Version using the Diagnostic and Statistical Manual of Mental Disorders, 4th Edition criteria. Chronic Multisymptom Illness...were evaluated based on the PTSD Checklist-Civilian Version using the Diagnostic and Statistical Manual of Mental Disorders, 4th Edition criteria. 1184
Miyao, Y; Tonouchi, A; Yokoyama, H
Karuizawa Hospital is a rural, small town municipal hospital with 60 beds, located in Nagano Prefecture in central Japan. The terminal stages of patients who were treated in our department of surgery but later died of cancer are reviewed. In the five year period extending from April, 1994 through March, 1999 sixty patients died from cancer. Of them, 34 people died in their own home and 26 in our hospital. The annual ratio of patients who died at home to those who died in the hospital are analyzed, as well as whether these ratios differed according to the location of the patient's cancer. The identity of the patients' main home caregiver was sought, as well as how many days the patients resided at home until they passed away, and how frequently doctors or nurses visited their home. Some of the doctors' attempts to gain informed consent are described. Based on the findings, the authors recommend an end to the practice of first revealing the name and details of a patient's disease to his/her family. It was also found that documented information is useful in order to promote smooth relationships among patients, family members, and the doctor.
Avari, Jimmy N; Alexopoulos, George S
Depression worsens most treatment outcomes in medically ill older adults. Chronic medical illnesses weaken and demoralize patients and compromise their ability to adhere to treatments requiring consistency and effort. Acute medical illnesses create a psychosocial storm that finds patients and their ecosystem unprepared. We describe two intervention models that can be used to target and personalize treatment in depressed, chronically, or acutely medically ill older adults. The Personalized Adherence Intervention for Depression and COPD (PID-C) is a model intervention for depressed patients with chronic medical illnesses. It targets patient-specific barriers to treatment engagement and aims to shift the balance in favor of treatment participation. PID-C led to higher remission rates of depression, reduction in depressive symptoms, and reduction in dyspnea-related disability. The addition of problem-solving training enables patients to use resources available to them and hopefully improve their outcomes. Ecosystem-focused therapy (EFT) is a model intervention for depression developing in the context of an acute medical event. It was developed for patients with poststroke depression (PSD) and targets five areas, part of the "psychosocial storm" originating from the patient's sudden disability and the resulting change in the patient's needs and family's life. A preliminary study suggests that EFT is feasible and efficacious in reducing depressive symptoms and signs and disability in PSD.
Barczykowska, Ewa; Szwed-Kolińska, Marzena; Wróbel-Bania, Agnieszka; Ślusarz, Robert
Treatment of chronic diseases in children is a special medical problem. Maintaining constant access to the central vascular system is necessary for long-term hemato-oncological and nephrological therapies as well as parenteral nutrition. Providing such access enables chemotherapic treatment, complete parenteral nutrition, long-term antibiotic therapy, hemodialysis, treatment of intensive care unit patients, monitoring blood pressure in the pulmonary artery and stimulation of heart rate in emergency situations as well as treatment of patients suffering from complications, especially when chances of access into peripheral veins are exhausted. Continuous access to the central vascular system is desirable in the treatment of chronically ill children. Insertion of a central venous catheter line eliminates the unnecessary pain and stress to a child patient accompanying injection into peripheral vessels. In order to gain long-term and secure access to the central venous system, respecting the guidelines of the Center for Disease Control and Prevention contained in the updated 'Guidelines for the Prevention of Intravascular Catheter-Related Infections' is necessary.
van Eijk, Jacques Th. M.; Bosma, Hans; Jonkers, Catharina C. M.; Lamers, Femke; Muijrers, Paul E. M.
In this study we assessed differences in new and repeat prescriptions of psycho-tropics between patients receiving prescriptions for drugs to treat a common chronic disease and people without such prescriptions. The study used the databases of two Dutch health insurance companies (3 million people). We selected all Dutch men and women aged 45 and older who were registered for six consecutive years (1999–2004). Our analyses both found a consistent relation between psycho-tropics on the one hand and physical illness on the other. People with multi-morbidity were prescribed these drugs most often, especially men and those younger than 65. Epidemiological studies showed a prevalence of depression among people with multi-morbidity to be twice as high as among people without such conditions. According to recent guidelines non-drug treatment may be the first therapy option for patients with non severe depression. If prescribed for a long time, benzodiazepine prescriptions are especially known to be addictive. Our data raise the question to what extent patients with a chronic physical disease suffering from co-occurring mental problems are prescribed psycho-tropics in accord with the guidelines that also advise mental support in case of non severe mental problems. Further research can answer this important question. PMID:21152218
Richmond, Ellison; Adams, Denise; Dagenais, Simon; Clifford, Tammy; Baydala, Lola; King, W James; Vohra, Sunita
BACKGROUND: The use of complementary and alternative medicine (CAM) has increased in recent years, with especially high prevalence in individuals with chronic illnesses. In the United States, the prevalence of CAM use in pediatric asthma patients is as high as 89%. OBJECTIVE: To investigate the epidemiology of pediatric CAM use in respiratory subspecialty clinics. METHODS: A survey was conducted at two hospital-based respiratory clinics in Edmonton (Alberta) and Ottawa (Ontario). Caregivers (most often parents) of children <18 years of age were asked questions regarding child and caregiver use of CAM, including products and practices used, beliefs about CAM, trust in information sources about CAM and characteristics of the respondents themselves. RESULTS: A total of 202 survey questionnaires were completed (151 from Edmonton and 51 from Ottawa). Pediatric CAM use in Edmonton was 68% compared with 45% in Ottawa, and was associated with caregiver CAM use, poorer health and health insurance coverage for CAM. The majority (67%) of children using CAM had taken prescription drugs concurrently and 58% of caregivers had discussed this with their doctor. DISCUSSION: Lifetime use of CAM at these pediatric clinics was higher than reported for children who do not have chronic diseases. CAM practices that are popular may be worthy of further research to evaluate their effectiveness and safety profile with regard to drug interactions. Health care providers should be encouraged to discuss CAM use at every visit, and explore their patient’s health-related beliefs, behaviours and treatment preferences. PMID:26078607
Pinquart, Martin; Pfeiffer, Jens P.
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…
De Filippis, Sergio; Erbuto, Denise; Gentili, Federica; Innamorati, Marco; Lester, David; Tatarelli, Roberto; Martelletti, Paolo; Pompili, Maurizio
To evaluate the relationship among quality of life, temperament, illness perception, and mental turmoil in patients affected by chronic daily headache with concomitant medication overuse headache. Participants were 116 consecutive adult outpatients admitted to the Department of General Medicine of the Sant'Andrea Hospital in Rome, between January 2007 and December 2007 with a diagnosis of chronic daily headache (illness duration >5 years). Patients were administered the Temperament Evaluation of Memphis, Pisa, Paris and San Diego-autoquestionnaire version (TEMPS-A), the Beck Hopelessness Scale (BHS), the Hamilton Rating Scale for Depression (HAM-D), the Mini-International Neuropsychiatric Interview (MINI), the Revised Illness Perception Questionnaire (IPQ), the Suicide Score Scale (SSS), and the Quality of Life Index (QL-Index). Twenty-eight percent of the patients evidenced moderate to severe depression, and 35% evidenced severe hopelessness. Analyses also indicated that quality of life, temperament, illness perception, and psychological turmoil are associated. However, a hierarchical multivariate regression analysis with quality of life as dependent variable indicated that only a model with mental turmoil variables may fit data; further, only the MINI suicidal intent resulted associated with quality of life (standardized regression coefficient = -0.55; t = -3.06; P < 0.01). Suicide risk may play a central role in affecting the quality of life of patients with chronic headache. The investigation of the interplay of factors that precipitate suicide risk should include assessment of chronic headache and its effects on wellbeing.
Cagle, Allyson; Shannon, Cheryl
The paper describes the pre-discharge program for chronically mentally ill patients at East Mississippi State Hospital and outlines program curriculum units. The program's requirements for admission, enrollment capacity, length of stay, program standards (on such matters as referral, assessment, and case records) and the typical activity schedule…
Gasparini, William; Knobé, Sandrine; Didierjean, Romaine
Objective: This study sought to determine the effects of an innovative public health programme offering physical and sports activities on medical prescription to chronically ill patients. Method: Semi-structured interviews were conducted with programme participants at two time points: at the start of their activity (n?=?33) and 3?months after the…
Greydanus, Donald; Patel, Dilip; Pratt, Helen
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…
Davis, Beth; Murphy, M. Shaun
This paper inquires into the experiences of an early childhood educator named Claire who taught a young girl with a chronic illness at East Willows Elementary School, a western Canadian elementary school. Using narrative inquiry as the methodology, Claire's experiences in her curriculum making alongside Madeline a young girl with Turner syndrome…
McManus, Margaret A.; And Others
The major purposes of this guide are to: (1) identify available national data on maternal and child health, with emphasis on costs of care and insurance coverage for chronically ill children; (2) explain to the reader how to use such data; and (3) offer recommendations for improving future collection and analysis of national data. The guide is…
Skär, Lisa; Söderberg, Siv
The aim of the study was to describe influences, benefits, and limitations in using information and communication technology to meet chronically ill patients' needs when living at home. The study is a descriptive, exploratory designed pilot study and the intervention was performed using an electronic communication program enabling communication between ill persons and the district nurse in real time by web cam pictures and sound. The participant used the programme once or twice a week from February to August 2008. Data were collected by means of repeated interviews and logbook notes, and were subjected to qualitative content analysis. The results showed that all participants appreciated being able to communicate regardless of time and place and their experiences of using information and communication technology revealed that it created feelings of safety and security. The information and communication technology became a tool in their communication and improved nursing care among seriously chronically ill persons living at home.
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…
Fore, David; Goldenhar, Linda M; Margolis, Peter A
Background A learning health system enables patients, clinicians, and researchers to work together to choose care based on the best evidence, drive discovery as a natural outgrowth of patient care, and ensure innovation, quality, safety, and value in health care; all in a more real-time fashion. Objective Our paper describes how goal-directed design (GDD) methods were employed to understand the context and goals of potential participants in such a system as part of a design process to translate the concept of a learning health system into a prototype collaborative chronic care network (C3N), specifically for pediatric inflammatory bowel disease. Methods Thirty-six one-on-one in-depth interviews and observations were conducted with patients (10/36, 28%), caregivers (10/36, 28%), physicians/researchers (10/36, 28%), and nurses (6/36, 17%) from a pediatric gastroenterology center participating in the ImproveCareNow network. GDD methods were used to determine the context and goals of participants. These same methods were used in conjunction with idealized design process techniques to help determine characteristics of a learning health system for this pediatric health care ecology. Research was conducted in a clinic and, in the case of some patients and caregivers, at home. Results Thematic analysis revealed 3 parent-child dyad personas (ie, representations of interviewees’ behavior patterns, goals, skills, attitudes, and contextual information) that represented adaptation to a chronic illness over time. These were used as part of a design process to generate scenarios (potential interactions between personas and the learning health system under design) from which system requirements were derived. These scenarios in turn helped guide generation, prioritization, design, measurement, and implementation of approximately 100 prototype interventions consistent with the aim of C3N becoming a learning health network. Conclusions GDD methods help ensure human goals and
The classification of a patient as terminally ill is based on an expert diagnosis of a severe and irreversible disease and the absence of an effective available treatment, according to present medical knowledge. Terminal diseases must not be confused with severe ones, since the latter may be reversible with an adequate and timely treatment. The physician assumes a great responsibility at the moment of diagnosing a patient as terminally ill. The professional must assume his care until the moment of death. This care must be oriented to the alleviation of symptoms and to provide the best possible quality of life. Also, help must be provided to deal with personal, legal and religious issues that may concern the patient.
Sauler, Maor; Gulati, Mridu
Synopsis With the introduction of new materials and changes in manufacturing practices, occupational health investigators continue to uncover associations between novel exposures and chronic forms of diffuse parenchymal lung disease and terminal airways disease. In order to discern exposure disease relationships, clinicians must maintain a high index of suspicion for the potential toxicity of occupational and environmental exposures. This article details several newly recognized chronic parenchymal and terminal airways. Diseases related to exposure to Indium, Nylon Flock, Diacetyl used in the flavorings industry, nanoparticles, and the World Trade Center disaster are reviewed. Additionally, this article will review methods in worker surveillance as well as the potential use of biomarkers in the evaluation of exposure disease relationships. PMID:23153608
Koutra, Katerina; Triliva, Sofia; Roumeliotaki, Theano; Stefanakis, Zacharias; Basta, Maria; Lionis, Christos; Vgontzas, Alexandros N
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.
Muthuri, Stella G.; Kuh, Diana; Bendayan, Rebecca; Macfarlane, Gary J.; Cooper, Rachel
Abstract This study aimed to examine the associations between serious illness in earlier life and risk of pain in old age using data from a large nationally representative British birth cohort, the Medical Research Council (MRC) National Survey of Health and Development (NSHD). Serious illness was defined as any experience of illness before age 25 requiring hospital admission of ≥28 days. Pain was self-reported at age 68, with chronic widespread pain (CWP) defined according to American College of Rheumatology criteria. Multinomial logistic regression was used to test associations of serious illness in early life with CWP, chronic regional pain (CRP), and other pain, with no pain as the referent category. Adjustment was made for sex, socioeconomic position, adult health status, health behaviours, and psychosocial factors. Of 2401 NSHD participants with complete data, 10.5% reported CWP (13.2% of women and 7.7% of men), 30.2% reported CRP, and 14.8% other pain. Compared with those with no history of serious illness, those who experienced serious illness in early life had a higher likelihood of CWP (relative risk ratio [RRR] = 1.62 [95% CI: 1.21-2.17]) and of CRP (RRR = 1.25 [95% CI: 1.01-1.54]) after adjusting for sex. In fully adjusted models, serious illness in early life remained associated with CWP (RRR = 1.43 [95% CI: 1.05-1.95]), but associations with CRP were attenuated (RRR = 1.19 [95% CI: 0.96-1.48]). There were no associations with other pain. These findings suggest that those who have experienced serious illness in earlier life may require more support than others to minimise their risk of CWP in later life. PMID:27547897
Muthuri, Stella G; Kuh, Diana; Bendayan, Rebecca; Macfarlane, Gary J; Cooper, Rachel
This study aimed to examine the associations between serious illness in earlier life and risk of pain in old age using data from a large nationally representative British birth cohort, the Medical Research Council (MRC) National Survey of Health and Development (NSHD). Serious illness was defined as any experience of illness before age 25 requiring hospital admission of ≥28 days. Pain was self-reported at age 68, with chronic widespread pain (CWP) defined according to American College of Rheumatology criteria. Multinomial logistic regression was used to test associations of serious illness in early life with CWP, chronic regional pain (CRP), and other pain, with no pain as the referent category. Adjustment was made for sex, socioeconomic position, adult health status, health behaviours, and psychosocial factors. Of 2401 NSHD participants with complete data, 10.5% reported CWP (13.2% of women and 7.7% of men), 30.2% reported CRP, and 14.8% other pain. Compared with those with no history of serious illness, those who experienced serious illness in early life had a higher likelihood of CWP (relative risk ratio [RRR] = 1.62 [95% CI: 1.21-2.17]) and of CRP (RRR = 1.25 [95% CI: 1.01-1.54]) after adjusting for sex. In fully adjusted models, serious illness in early life remained associated with CWP (RRR = 1.43 [95% CI: 1.05-1.95]), but associations with CRP were attenuated (RRR = 1.19 [95% CI: 0.96-1.48]). There were no associations with other pain. These findings suggest that those who have experienced serious illness in earlier life may require more support than others to minimise their risk of CWP in later life.
Russell, Luke T; Coleman, Marilyn; Ganong, Lawrence H; Gayer, Debra
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.
Background Though potentially linked to the basic physiology of stress response we still have no clear understanding of Gulf War Illness (GWI), a debilitating condition presenting complex immune, endocrine and neurological symptoms. Here we compared male (n = 20) and female (n = 10) veterans with GWI separately against their healthy counterparts (n = 21 male, n = 9 female) as well as subjects with chronic fatigue syndrome/ myalgic encephalomyelitis (CFS/ME) (n = 12 male, n = 10 female). Methods Subjects were assessed using a Graded eXercise Test (GXT) with blood drawn prior to exercise, at peak effort (VO2 max) and 4-hours post exercise. Using chemiluminescent imaging we measured the concentrations of IL-1a, 1b, 2, 4, 5, 6, 8, 10, 12 (p70), 13, 15, 17 and 23, IFNγ, TNFα and TNFβ in plasma samples from each phase of exercise. Linear classification models were constructed using stepwise variable selection to identify cytokine co-expression patterns characteristic of each subject group. Results Classification accuracies in excess of 80% were obtained using between 2 and 5 cytokine markers. Common to both GWI and CFS, IL-10 and IL-23 expression contributed in an illness and time-dependent manner, accompanied in male subjects by NK and Th1 markers IL-12, IL-15, IL-2 and IFNγ. In female GWI and CFS subjects IL-10 was again identified as a delineator but this time in the context of IL-17 and Th2 markers IL-4 and IL-5. Exercise response also differed between sexes: male GWI subjects presented characteristic cytokine signatures at rest but not at peak effort whereas the opposite was true for female subjects. Conclusions Though individual markers varied, results collectively supported involvement of the IL-23/Th17/IL-17 axis in the delineation of GWI and CFS in a sex-specific way. PMID:23800166
Hartley, N A
Music therapists are constantly called upon to justify their work through research projects and evaluation processes. Rarely do we get the opportunity to talk personally about our work, the effects it has on us as music therapists, indeed, as human beings. This paper traces my own journey as a music therapist working with the terminally ill. Using audio extracts of music improvised with patients at the end of their lives, the concept of "attention" in music is addressed and explored. The paper will investigate: a) What is the difference between the quality of attention that is available to ourselves and our patients "in" music, as opposed to other ways of being together?; b) What does musical experience, particularly when achieved through improvisation, enable us and our patients to be that we cannot achieve in other ways?; c) Can "being in music" with another person fulfill a sense of longing that is evident in people at the end of their lives? In her book Waiting For God, Simone Weil suggests, "Those who are unhappy have no need for anything else in this world other than people capable of giving them their attention..." (1). Can the improvisation of music offer a unique and uncomplicated medium for being close?
Siever, B A
Optimal pain control in the dying child often requires aggressive opioid therapy that exceeds recommended parameters and may hasten death caused by respiratory depression. For pediatric nurses caring for the dying child, the administration of potentially life-shortening analgesia gives rise to a number of ethical issues. Pediatric nurses often express concern that aggressive pain control is a form of euthanasia or fear the child will develop a drug dependence. Lack of clarity about the ethical obligations and professional responsibilities of nurses who administer potentially life-shortening analgesia may also contribute to the dilemmas surrounding such situations. If left unresolved, these issues can interfere with the nurse's ability to implement an appropriate pain regimen. To provide adequate pain control, pediatric nurses who care for dying children must accomplish the following: critically examine ethical issues and underlying principles; understand the phenomena of addiction, tolerance, and physical dependence; and identify the boundaries of acceptable nursing practice when administering potentially life-shortening analgesia to terminally ill children.
Linna, Miika; Rönkkö, Ilona; Kröger, Virpi
Background Electronic patient portals may enhance effective interaction between the patient and the health care provider. To grasp the full potential of patient portals, health care providers need more knowledge on which patient groups prefer electronic services and how patients should be served through this channel. Objective The objective of this study was to assess how chronically ill patients’ state of health, comorbidities, and previous care are associated with their adoption and use of a patient portal. Methods A total of 222 chronically ill patients, who were offered access to a patient portal with their health records and secure messaging with care professionals, were included in the study. Differences in the characteristics of non-users, viewers, and interactive users of the patient portal were analyzed before access to the portal. Patients’ age, gender, diagnoses, levels of the relevant physiological measurements, health care contacts, and received physiological measurements were collected from the care provider’s electronic health record. In addition, patient-reported health and patient activation were assessed by a survey. Results Despite the broad range of measures used to indicate the patients’ state of health, the portal user groups differed only in their recorded diagnosis for hypertension, which was most common in the non-user group. However, there were significant differences in the amount of care received during the year before access to the portal. The non-user group had more nurse visits and more measurements of relevant physiological outcomes than viewers and interactive users. They also had fewer referrals to specialized care during the year before access to the portal than the two other groups. The viewers and the interactive users differed from each other significantly in the number of nurse calls received, the interactive users having more calls than the viewers. No significant differences in age, gender, or patient activation were
Valtorta, Nicole K; Hanratty, Barbara
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.
Treating Chronic Pain in Gulf War Illness PRINCIPAL INVESTIGATOR: Peter Bayley, PhD RECIPIENT: PALO ALTO VETERANS INSTITUTE FOR RESEARCH Palo Alto...Patient-Centered Support Group for Treating Chronic Pain in Gulf War Illness 5a. CONTRACT NUMBER W81XWH-14-1-0615 5b. GRANT NUMBER 5c. PROGRAM...Unlimited 13. SUPPLEMENTARY NOTES 14. ABSTRACT The primary objective is to investigate yoga for the treatment of chronic pain in veterans with Gulf War
Currow, David C; Clark, Katherine; Kamal, Arif; Collier, Aileen; Agar, Meera R; Lovell, Melanie R; Phillips, Jane L; Ritchie, Christine
Many people in our communities live with symptoms for years or decades, something of relevance to hospice/palliative care clinicians and researchers. The proportion of people in the community at large who have a chronic symptom is likely to approximate the proportion of people referred to hospice/palliative care services with that same chronic symptom that pre-dates their life-limiting illness. Such patients may have different responsiveness to, and expectations from, symptomatic therapies, thus requiring more advanced approaches to symptom control. For researchers evaluating the impact of hospice/palliative care services, failing to account for people with long-term refractory symptoms pre-dating their life-limiting illness may systematically underestimate services' benefits. Observational symptom prevalence studies reported in hospice/palliative care to date have not accounted for people with long-term refractory symptoms, potentially systematically overestimating symptoms attributed to life-limiting illnesses. Cross-sectional community prevalence rates of key chronic refractory symptoms largely unrelated to their life-limiting illness reflect the likely prevalence on referral to hospice/palliative care: fatigue (up to 35%); pain (12%-31%); pain with neuropathic characteristics (9%); constipation (2%-29%); dyspnea (4%-9%); cognitive impairment (>10% of people >65 years old; >30% of people >85 years old); anxiety (4%); and depression (lifetime incidence 2%-15%; one year prevalence 3%). Prospective research is needed to establish (1) the prevalence and severity of chronic symptoms that pre-date the diagnosis of a life-limiting illness in people referred to hospice/palliative care services, comparing this to whole-of-population estimates; and (2) whether this group is disproportionately represented in people with refractory symptoms.
Wiley, James A; Rittenhouse, Diane R; Shortell, Stephen M; Casalino, Lawrence P; Ramsay, Patricia P; Bibi, Salma; Ryan, Andrew M; Copeland, Kennon R; Alexander, Jeffrey A
The effective management of patients with chronic illnesses is critical to bending the curve of health care spending in the United States and is a crucial test for health care reform. In this article we used data from three national surveys of physician practices between 2006 and 2013 to determine the extent to which practices of all sizes have increased their use of evidence-based care management processes associated with patient-centered medical homes for patients with asthma, congestive heart failure, depression, and diabetes. We found relatively large increases over time in the overall use of these processes for small and medium-size practices as well as for large practices. However, the large practices used fewer than half of the recommended processes, on average. We also identified the individual processes whose use increased the most and show that greater use of care management processes is positively associated with public reporting of patient experience and clinical quality and with pay-for-performance.
May, Carl; Finch, Tracy; Mair, Frances; Mort, Maggie
'Modernization' is a key health policy objective in the UK. It extends across a range of public service delivery and organizational contexts, and also means there are radical changes in perspective on professional behaviour and practice. New information and communications technologies have been seen as one of the key mechanisms by which these changes can be engendered. In particular, massive investment in information technologies promises the rapid distribution and deployment of patient-centred information across internal organizational boundaries. While the National Health Service (NHS) sits on the edge of a pound sterling 6 billion investment in electronic patient records, other technologies find their status as innovative vehicles for professional behaviour change and service delivery in question. In this paper, we consider the ways that telemedicine and telehealthcare systems have been constructed first as a field of technological innovation, and more recently, as management solutions to problems around the distribution of health care. We use NHS responses to chronic illness as a medium for understanding these shifts. In particular, we draw attention to the shifting definitions of 'innovation' and to the ways that these shifts define a move away from notions of technological advance towards management control.
Lerret, Stacee M; Weiss, Marianne; Stendahl, Gail; Chapman, Shelley; Menendez, Jerome; Williams, Laurel; Nadler, Michelle; Neighbors, Katie; Amsden, Katie; Cao, Yumei; Nugent, Melodee; Alonso, Estella; Simpson, Pippa
Pediatric solid organ transplant recipients are medically fragile and present with complex care issues requiring high-level management at home. Parents of hospitalized children have reported inadequate preparation for discharge, resulting in problems transitioning from hospital to home and independently self-managing their child’s complex care needs. The aim of this study was to investigate factors associated with the transition from hospital to home and chronic illness care for parents of heart, kidney, liver, lung, or multivisceral recipients. Fifty-one parents from five pediatric transplant centers completed questionnaires on the day of hospital discharge and telephone interviews at 3-week, 3-month, and 6-months following discharge from the hospital. Care coordination (p = .02) and quality of discharge teaching (p < .01) was significantly associated with parent readiness for discharge. Readiness for hospital discharge was subsequently significantly associated with post-discharge coping difficulty (p = .02) at 3-weeks, adherence with medication administration (p = .03) at 3-months, and post-discharge coping difficulty (p = .04) and family management (p = .02) at 6-months post-discharge. The results underscore the important aspect of education and care coordination in preparing patients and families to successfully self-manage after hospital discharge. Assessing parental readiness for hospital discharge is another critical component for identifying risk of difficulties in managing post-discharge care. PMID:25425201
Bhasin, Shalender; Calof, Olga M; Storer, Thomas W; Lee, Martin L; Mazer, Norman A; Jasuja, Ravi; Montori, Victor M; Gao, Wenqing; Dalton, James T
SUMMARY Several regulatory concerns have hindered development of androgens as anabolic therapies, despite unequivocal evidence that testosterone supplementation increases muscle mass and strength in men; it induces hypertrophy of type I and II muscle fibers, and increases myonuclear and satellite cell number. Androgens promote differentiation of mesenchymal multipotent cells into the myogenic lineage and inhibit their adipogenic differentiation, by facilitating association of androgen receptors with β-catenin and activating T-cell factor 4. Meta-analyses indicate that testosterone supplementation increases fat-free mass and muscle strength in HIV-positive men with weight loss, glucocorticoid-treated men, and older men with low or low-normal testosterone levels. The effects of testosterone on physical function and outcomes important to patients have not, however, been studied. In older men, increased hematocrit and increased risk of prostate biopsy and detection of prostate events are the most frequent, testosterone-related adverse events. Concerns about long-term risks have restrained enthusiasm for testosterone use as anabolic therapy. Selective androgen-receptor modulators that are preferentially anabolic and that spare the prostate hold promise as anabolic therapies. We need more studies to determine whether testosterone or selective androgen-receptor modulators can induce meaningful improvements in physical function and patient-important outcomes in patients with physical dysfunction associated with chronic illness or aging. PMID:16932274
Park, M J; Green, Joseph; Ishikawa, Hirono; Kiuchi, Takahiro
People with chronic illnesses can benefit from self-management education. However, those benefits are said to decay over time (there is some evidence that this 'decay of impact' does occur), and the reinforcements used to prevent that decay appear to be ineffective. We hypothesize that the reinforcements appear to be ineffective because decay of impact occurs only in a subgroup of these programs' participants, so any benefits of reinforcements in that subgroup are concealed by whole-group summary statistics. We also hypothesize that reinforcements can benefit those who need them - those who would otherwise have decay. One approach to testing these hypotheses requires analysis of individual-level data, which is uncommon in this field. Some useful data could come from studies that have already been completed, but the strongest evidence will require prospectively designed tests in future trials. If the hypotheses are false, then time and resources spent on reinforcements can be saved or redirected. If the hypotheses are true, then reinforcements can be implemented with less waste and they can be made more effective. These programs can also be improved to better fit their users' needs, and there can be a new basis for evaluating the programs' effectiveness.
Bartholomée, Yvette; Maarse, Hans
On January 1, 2006, the Dutch government instituted major reforms to the country's health insurance scheme. One of the features of the new system is the opportunity for groups to form collectives that may negotiate and enter into group contracts with health insurers. This article discusses one particular type of collective, namely patient collectives. The purpose of this paper is to investigate if, and to what extent, patient collectives empower chronically ill patients. The results of the study show that some patient groups were able to contract collective agreements with health insurers, whereas others were not. The eligibility of a group's disease for compensation through the risk equalisation fund (which subsidises the costs for many but not all disorders) seems to determine whether or not a patient organisation is able to successfully negotiate a collective contract for its members. Another key factor for success is the presence of a large membership whose constituents have similar healthcare needs. If both of these factors are present, insurers are more likely to develop specific products for particular groups of patients, as is the case for people with diabetes. Furthermore, the presence of patient collectives accords patient associations with a new role. It may be possible for them to become powerful players in the health insurance market. However, this new role may also lead to tensions, both within and between associations.
Verhaegh, Kim J; MacNeil-Vroomen, Janet L; Eslami, Saeid; Geerlings, Suzanne E; de Rooij, Sophia E; Buurman, Bianca M
Transitional care interventions aim to improve care transitions from hospital to home and to reduce hospital readmissions for chronically ill patients. The objective of our study was to examine if these interventions were associated with a reduction of readmission rates in the short (30 days or less), intermediate (31-180 days), and long terms (181-365 days). We systematically reviewed twenty-six randomized controlled trials conducted in a variety of countries whose results were published in the period January 1, 1980-May 29, 2013. Our analysis showed that transitional care was effective in reducing all-cause intermediate-term and long-term readmissions. Only high-intensity interventions seemed to be effective in reducing short-term readmissions. Our findings suggest that to reduce short-term readmissions, transitional care should consist of high-intensity interventions that include care coordination by a nurse, communication between the primary care provider and the hospital, and a home visit within three days after discharge.
van Staa, AnneLoes; Jedeloo, Susan; van der Stege, Heleen
Background: As important users of health care, adolescents with chronic conditions deserve to be consulted about their experiences and expectations. This study aimed to explore chronically ill adolescents’ preferences regarding providers’ qualities, and outpatient and inpatient care. Furthermore, suggestions for improvement of service delivery were collected. Methods: This research was a sequential mixed methods study in adolescents aged 12–19 years with various chronic conditions treated in a university children’s hospital. Methods comprised 31 face-to-face interviews at home, a hospital-based peer research project in which nine adolescents interviewed 34 fellow patients, and a web-based questionnaire (n = 990). Emerging qualitative themes were transformed into questionnaire items. Results: Having “a feeling of trust” and “voice and choice” in the hospital were central to these adolescents. Regarding providers’ qualities, “being an expert” and “being trustworthy and honest” were ranked highest, followed by “being caring and understanding”, “listening and showing respect”, and “being focused on me”. Regarding outpatient consultations, preferences were ranked as follows: “answering all questions”; “attending to my and my parents’ needs”; and “clear communication”, while “limited waiting times” and “attractive outpatient surroundings” scored lowest. Regarding hospitalization, adolescents most preferred to “avoid pain and discomfort”, “keep in touch with home”, and “be entertained”, while “being hospitalized with peers” and “being heard” were least important. Regarding priorities for improvement, 52% of the respondents felt that more attention should be paid to older children, followed by enabling more contact with family and friends (45%), shorter waiting times (43%), and more activities to meet fellow patients (35%). Conclusion: Adolescents prefer technically competent providers, who are
Harrison, A; al-Saadi, A M; al-Kaabi, A S; al-Kaabi, M R; al-Bedwawi, S S; al-Kaabi, S O; al-Neaimi, S B
OBJECTIVES: To study the opinions of nationals (Emiratis) and doctors practising in the United Arab Emirates (UAE) with regard to informing terminally ill patients. DESIGN: Structured questionnaires administered during January 1995. SETTING: The UAE, a federation of small, rich, developing Arabian Gulf states. PARTICIPANTS: Convenience samples of 100 Emiratis (minimum age 15 years) and of 50 doctors practising in government hospitals and clinics. RESULTS: Doctors emerged as consistently less in favour of informing than the Emiratis were, whether the patient was described as almost certain to die during the next six months or as having a 50% chance of surviving, and even when it was specified that the patient was requesting information. In the latter situation, a third of doctors maintained that the patient should not be told. Increasing survival odds reduced the number of doctors selecting to inform; but it had no significant impact on Emiratis' choices. When Emiratis were asked whether they would personally want to be informed if they had only a short time to live, less than half responded in the way they had done to the in principle question. CONCLUSIONS: The doctors' responses are of concern because of the lack of reference to ethical principles or dilemmas, the disregard of patients' wishes and dependency on survival odds. The heterogeneity of Emiratis' responses calls into question the usefulness of invoking norms to explain inter-society differences. In the current study, people's in principle choices did not provide a useful guide to how they said they would personally wish to be treated. PMID:9134491
Goudge, Jane; Gilson, Lucy; Russell, Steven; Gumede, Tebogo; Mills, Anne
Background There is an increasing burden of chronic illness in low and middle income countries, driven by TB/HIV, as well as non-communicable diseases. Few health systems are organized to meet the needs of chronically ill patients, and patients' perspectives on the difficulties of accessing care need to be better understood, particularly in poor resourced settings, to achieve this end. This paper describes the experience of poor households attempting to access chronic care in a rural area of South Africa. Methods A household survey (n = 1446 individuals) was combined with qualitative longitudinal research that followed 30 case study households over 10 months. Illness narratives and diaries provided descriptive textual data of household interactions with the health system. Results In the survey 74% of reported health problems were 'chronic', 48% of which had no treatment action taken in the previous month. Amongst the case study households, of the 34 cases of chronic illness, only 21 (62%) cases had an allopathic diagnosis and only 12 (35%) were receiving regular treatment. Livelihoods exhausted from previous illness and death, low income, and limited social networks, prevented consultation with monthly expenditure for repeated consultations as high as 60% of income. Interrupted drug supplies, insufficient clinical services at the clinic level necessitating referral, and a lack of ambulances further hampered access to care. Poor provider-patient interaction led to inadequate understanding of illness, inappropriate treatment action, 'healer shopping', and at times a break down in cooperation, with the patient 'giving up' on the public health system. However, productive patient-provider interactions not only facilitated appropriate treatment action but enabled patients to justify their need for financial assistance to family and neighbours, and so access care. In addition, patients and their families with understanding of a disease became a community resource drawn on
Following the author's own experiences with chronic pain due to a motorcycle accident during medical school, and the pain's unresponsiveness to conventional medicine, he sought other solutions. His journey led him to a new understanding of health and illness. With these insights and through the use of acupuncture, bodywork and various breathing techniques, he began to see phenomena--emotional release, myoclonic shaking, and regression--and healing that could not be explained in terms of a rational or structural framework. He posits that such phenomena represent different forms of de-stressing which together serve to release "blocked feeling," which he suggests is the "energy block" described by acupuncture theory as "stagnant Qi." The fourth in a series, this installment explores the role of repressed anger and its relationship to chronic illness.
Uchmanowicz, Izabella; Jankowska-Polanska, Beata; Chabowski, Mariusz; Uchmanowicz, Bartosz; Fal, Andrzej M
COPD is one of the most debilitating diseases. Frailty syndrome and advanced age may decrease the acceptance of illness, quality of life, and worsen health conditions in these patients, as well as lead to an increase in health care expenses. The aim of the study was to assess how the level of frailty affects the acceptance of illness in elderly patients with COPD. We also aimed to evaluate the associations between sociodemographic and clinical factors and the level of acceptance of illness, anxiety, and frailty in this group of patients. The study included 102 COPD patients with a mean age of 63.2 (standard deviation =6.5) years and grades I (3%), II (37%), III (52%), and IV (8%) by Global Initiative for Chronic Obstructive Lung Disease. The Polish versions of the Acceptance of Illness Scale and Tilburg frailty indicator were used. Frailty syndrome was found in 77 (75.5%) patients, with an average score of 7.42 (standard deviation =2.24). Coexisting diseases such as hypertension (46.07%), coronary artery disease (32.35%), heart failure (28.43%), diabetes (18.63%), and heart arrhythmia (9.8%) were found among the subjects. The overall level of acceptance of illness was 20.6 (standard deviation =7.62). A lower level of acceptance of illness was associated with a higher level of frailty, especially in the physical and social domain. Elderly patients with severe COPD are more prone to frailty and decreased acceptance of their disease in comparison to patients with other chronic diseases. Assessment and management of frailty in the care of older COPD patients are likely to improve risk stratification significantly and help personalize management, leading to better patient outcomes. PMID:27729781
Background Chronic fatigue syndrome (CFS) has no diagnostic clinical signs or biomarkers, so diagnosis requires ruling out conditions with similar signs and symptoms. We conducted a pilot registry of unexplained fatiguing illnesses and CFS to determine the feasibility of establishing and operating a registry and implementing an education outreach initiative. The pilot registry was conducted in Bibb County, Georgia. Patient referrals were obtained from healthcare providers who were identified by using various education outreach initiatives. These referrals were later supplemented with self-referrals by members of a local CFS support group. All patients meeting referral criteria were invited to participate in a screening interview to determine eligibility. If patients met registry criteria, they were invited to a one-day clinic for physical and laboratory evaluations. We classified patients based on the 1994 case definition. Results We registered 827 healthcare providers. Forty-two providers referred 88 patients, and 58 patients (66%) completed clinical evaluation. Of the 188 CFS support group members, 53 were self-referred and 46 (87%) completed the clinical evaluation. Of the 104 participants completing evaluation, 36% (n = 37) met the criteria for CFS, 17% (n = 18) had insufficient fatigue or symptoms (ISF), and 47% (n = 49) were found to have exclusionary medical or psychiatric illnesses. Classification varied significantly by type of referral but not by previous history of CFS diagnosis. Healthcare providers referred more patients who were classified as CFS as compared to support group referrals in which more exclusionary conditions were identified. Family practice and internal medicine specialties made the most referrals and had the highest number of CFS cases. We conducted three CME events, held three “Meet and Greet” sessions, visited four large clinical health practices and health departments, mailed five registry newsletters, and conducted
Kim, Jinhyun; Richardson, Virginia
This study aims to examine poverty, chronic illnesses, health insurance, and health care expenditures, within the context of a political economy of aging perspective. Subsamples of 1,773 older adults from the Medical Expenditure Panel Survey were selected for analyses. The results showed that chronic illnesses influenced out-of-pocket health care costs. Older persons with more than one health insurance spent less on out-of-pocket health care costs. The results have implications for health care social workers concerned with the growing costs of chronic illnesses, implementing integrated care, and advocating for extending public health insurance coverage especially for our most impoverished older adults.
Epstein, Iris; Stinson, Jennifer; Stevens, Bonnie
Chronic illness in children may negatively affect aspects of health-related quality of life (HRQL). Over many years, camps have been organized to address the physical and psychosocial needs of children with various chronic illnesses, while providing a "normal" as possible camp experience. The aim of this study was to critically review all research examining the effect of camps on HRQL in children with chronic illnesses. The literature review yielded no randomized, controlled clinical trials; 8 pretest-posttest study designs with repeated measures; 9 pre-post studies; and 1 survey design. A total of 1270 children, ranging in age from 6 to 25 years, participated in the studies.
Horta, A L; Araújo, A P; Aprile, C M; Echalar, C M; Paredes, F N; Caminada, S
This study reported family's reaction of the child terminally ill, identified by the pediatric nurses. It focuses on the suggested assistance to the family and on the pediatric nurses difficulties in this situation. This study was carried out with 35 nurses working at two University Hospitals. We based the analysis on the phases of dying of KUBLER-ROSS and Guide of Communication with parents of WHALEY & WONG, besides our own categorization.
Mendoza-Avelares, Milton O.; Milton, Evan C.; Lange, Ilta; Fajardo, Roosevelt
Abstract Objectives: Patients in underdeveloped countries may be left behind by advances in telehealthcare. We surveyed chronically ill patients with low incomes in Honduras to measure their use of mobile technologies and willingness to participate in mobile disease management support. Materials and Methods: 624 chronically ill primary care patients in Honduras were surveyed. We examined variation in telephone access across groups defined by patients' sociodemographic characteristics, diagnoses, and access to care. Logistic regression was used to identify independent correlates of patients' interest in automated telephonic support for disease management. Results: Participants had limited education (mean 4.8 years), and 65% were unemployed. Eighty-four percent had telephone access, and 78% had cell phones. Most respondents had voicemail (61%) and text messaging (58%). Mobile technologies were particularly common among patients who had to forego clinic visits and medications due to cost concerns (each p < 0.05). Most patients (>80%) reported that they would be willing to receive automated calls focused on appointment reminders, medication adherence, health status monitoring, and self-care education. Patients were more likely to be willing to participate in automated telemedicine services if they had to cancel a clinic appointment due to transportation problems or forego medication due to cost pressures. Conclusions: Even in this poor region of Honduras, most chronically ill patients have access to mobile technology, and most are willing to participate in automated telephone disease management support. Given barriers to in-person care, new models of mobile healthcare should be developed for chronically ill patients in developing countries. PMID:21062234
Mood disorders are more prevalent in individuals with chronic physical illness compared to individuals with no such illness. These disorders amplify the disability associated with the physical condition and adversely affect its course, thus contributing to occupational impairment, disruption in interpersonal and family relationships, poor health and suicide. This study used data collected in the Canadian Community Health Survey, cycle 3.1 (2005) to examine factors associated with comorbid mood disorders and to assess their association with the quality of life of individuals living in Ontario. Results indicate that individuals with chronic fatigue syndrome, fibromyalgia, bowel disorder or stomach or intestinal ulcers had the highest rates of mood disorders. The odds of having a comorbid mood disorder were higher among women, the single, those living in poverty, the Canadian born and those between 30 and 69 years of age. The presence of comorbid mood disorders was significantly associated with short-term disability, requiring help with instrumental daily activities and suicidal ideation. Health care providers are urged to proactively screen chronically ill patients for mood disorders, particularly among the subgroups found to have elevated risk for these disorders.
Waverijn, Geeke; Heijmans, Monique; Spreeuwenberg, Peter; Groenewegen, Peter P
Health literacy skills are important for health and self-management for people with chronic illness. Neighborhood social capital can provide resources, such as access to information and informal social control over unhealthy behavior. The benefit of these resources, and the access people have to these resources, might depend on levels of health literacy. We investigated whether neighborhood social capital is differentially related to the health of people with chronic illness according to health literacy skills. This study focused on health literacy skills in 4 domains related to the ability to access and understand health information and to the ability to perform self-management. We found a significant positive interaction between social capital and health literacy skills for accessing and understanding health information. This suggests that health literacy enhances people's ability to gain access to and use neighborhood resources to benefit health. There was no interaction effect between social capital and health literacy skills in the other 2 domains. More research is needed to investigate how people with chronic illness can benefit from knowledge, support, and other social resources for health and self-management also whether they have limited health literacy skills.
Piette, John D; Mendoza-Avelares, Milton O; Chess, Laura; Milton, Evan C; Matiz Reyes, Armando; Rodriguez-Saldaña, Joel
The U.S. financial crisis has affected employment opportunities for Latino immigrants, and this could affect their ability to send financial assistance, or "remittances", to chronically ill family members in their home country. In a cross-sectional survey of 624 chronically ill adults conducted in Honduras between June and August 2009, respondents reported their receipt of remittances, health service use, and cost-related access barriers. Fifty-four percent of respondents reported relatives living outside the country, and of this group, 66 percent (37% of the overall sample) received remittances. Seventy-four percent of respondents receiving remittances reported a decrease over the prior year, mostly due to job losses among their relatives abroad. Respondents reporting reductions in remittances received significantly less per month, on average, than those without a reduction (US $170 vs. $234; p = 0.01). In multivariate models, respondents experiencing a reduction in remittances used fewer health services and medications due to cost concerns. Remittance payments from relatives resident in the United States are a major source of income for chronically ill individuals in Latin America. Most recipients of remittances reported a reduction during the financial downturn that affected their access to care.
This study is to identify culturally relevant treatment methods and to assess the effects of family psychoeducational intervention for Korean Americans who had a family member with mental illness. 48 Korean Americans with children with mental illness were randomly assigned to either an experimental group program that provided culturally sensitive…
van der Vlegel-Brouwer, Wilma
Integrated care offers an opportunity to address healthcare efficiency and effectiveness concerns and is especially relevant for elderly patients with different chronic illnesses. In current care standards for chronic care focus is often on one disease. The chronic care model (CCM) is used as the basis of integrated care programs. It identifies essential components that encourage high-quality chronic disease care, involving the community and health system and including self-management support, delivery system design, decision support, and clinical information systems. Improvements in those interrelated components can produce system reform in which informed, activated patients interact with prepared, proactive practice teams. There is however a lack of research evidence for the impact of the chronic care model as a full model. Integrated care programs have widely varying definitions and components and failure to recognize these variations leads to inappropriate conclusions about the effectiveness of these programs and to inappropriate application of research results. It seems important to carefully consider the type and amount of data that are collected within the disease management programs for several purposes, as well as the methods of data collection. Understanding and changing the behavior of complex dynamic chronic care system requires an appreciation of its key patterns, leverage points and constraints. A different theoretical framework, that embraces complexity, is required. Research should be design-based, context bound and address relationships among agents in order to provide solutions that address locally defined demands and circumstances.
Bailie, Jodie; Schierhout, Gill; Laycock, Alison; Kelaher, Margaret; Percival, Nikki; O'Donoghue, Lynette; McNeair, Tracy; Bailie, Ross
Objectives Indigenous Australians have a disproportionately high burden of chronic illness, and relatively poor access to healthcare. This paper examines how a national multicomponent programme aimed at improving prevention and management of chronic disease among Australian Indigenous people addressed various dimensions of access. Design Data from a place-based, mixed-methods formative evaluation were analysed against a framework that defines supply and demand-side dimensions to access. The evaluation included 24 geographically bounded ‘sentinel sites’ that included a range of primary care service organisations. It drew on administrative data on service utilisation, focus group and interview data on community members’ and service providers’ perceptions of chronic illness care between 2010 and 2013. Setting Urban, regional and remote areas of Australia that have relatively large Indigenous populations. Participants 670 community members participated in focus groups; 374 practitioners and representatives of regional primary care support organisations participated in in-depth interviews. Results The programme largely addressed supply-side dimensions of access with less focus or impact on demand-side dimensions. Application of the access framework highlighted the complex inter-relationships between dimensions of access. Key ongoing challenges are achieving population coverage through a national programme, reaching high-need groups and ensuring provision of ongoing care. Conclusions Strategies to improve access to chronic illness care for this population need to be tailored to local circumstances and address the range of dimensions of access on both the demand and supply sides. These findings highlight the importance of flexibility in national programme guidelines to support locally determined strategies. PMID:26614617
Sanders, Nicole; Smeets, Paul A. M.; van Elburg, Annemarie A.; Danner, Unna N.; van Meer, Floor; Hoek, Hans W.; Adan, Roger A. H.
Anorexia nervosa (AN) is a severe mental disorder characterized by food restriction and weight loss. This study aimed to test the model posed by Brooks et al. (2012a,b) that women suffering from chronic AN show decreased food-cue processing activity in brain regions associated with energy balance and food reward (bottom-up; BU) and increased activity in brain regions associated with cognitive control (top-down; TD) when compared with long-term recovered AN (REC) and healthy controls (HC). Three groups of women, 15 AN (mean illness duration 7.8 ± 4.1 years), 14 REC (mean duration of recovery 4.7 ± 2.7 years) and 15 HC viewed alternating blocks of food and non-food images preceded by a short instruction during functional magnetic resonance imaging (fMRI), after fasting overnight. Functional region of interests (fROIs) were defined in BU (e.g., striatum, hippocampus, amygdala, hypothalamus, and cerebellum), TD (e.g., medial and lateral prefrontal cortex, and anterior cingulate), the insula, and visual processing areas (VPA). Food-cue processing activation was extracted from all fROIs and compared between the groups. In addition, functional connectivity between the fROIs was examined by modular partitioning of the correlation matrix of all fROIs. We could not confirm the hypothesis that BU areas are activated to a lesser extent in AN upon visual processing of food images. Among the BU areas the caudate showed higher activation in both patient groups compared to HC. In accordance with Brooks et al.’s model, we did find evidence for increased TD control in AN and REC. The functional connectivity analysis yielded two clusters in HC and REC, but three clusters in AN. In HC, fROIs across BU, TD, and VPA areas clustered; in AN, one cluster span across BU, TD, and insula; one across BU, TD, and VPA areas; and one was confined to the VPA network. In REC, BU, TD, and VPA or VPA and insula clustered. In conclusion, despite weight recovery, neural processing of food
Hurwitz, Barry E; Coryell, Virginia T; Parker, Meela; Martin, Pedro; Laperriere, Arthur; Klimas, Nancy G; Sfakianakis, George N; Bilsker, Martin S
The study examined whether deficits in cardiac output and blood volume in a CFS (chronic fatigue syndrome) cohort were present and linked to illness severity and sedentary lifestyle. Follow-up analyses assessed whether differences in cardiac output levels between CFS and control groups were corrected by controlling for cardiac contractility and TBV (total blood volume). The 146 participants were subdivided into two CFS groups based on symptom severity data, severe (n=30) and non-severe (n=26), and two healthy non-CFS control groups based on physical activity, sedentary (n=58) and non-sedentary (n=32). Controls were matched to CFS participants using age, gender, ethnicity and body mass. Echocardiographic measures indicated that the severe CFS participants had 10.2% lower cardiac volume (i.e. stroke index and end-diastolic volume) and 25.1% lower contractility (velocity of circumferential shortening corrected by heart rate) than the control groups. Dual tag blood volume assessments indicated that the CFS groups had lower TBV, PV (plasma volume) and RBCV (red blood cell volume) than control groups. Of the CFS subjects with a TBV deficit (i.e. > or = 8% below ideal levels), the mean+/-S.D. percentage deficit in TBV, PV and RBCV were -15.4+/-4.0, -13.2+/-5.0 and -19.1+/-6.3% respectively. Lower cardiac volume levels in CFS were substantially corrected by controlling for prevailing TBV deficits, but were not affected by controlling for cardiac contractility levels. Analyses indicated that the TBV deficit explained 91-94% of the group differences in cardiac volume indices. Group differences in cardiac structure were offsetting and, hence, no differences emerged for left ventricular mass index. Therefore the findings indicate that lower cardiac volume levels, displayed primarily by subjects with severe CFS, were not linked to diminished cardiac contractility levels, but were probably a consequence of a co-morbid hypovolaemic condition. Further study is needed to address
Obayashi, Patricia A C
Issues regarding food safety are seen increasingly in the news; outbreaks of foodborne illness have been associated with public health concerns ranging from mild illness to death. For the solid organ transplant patient, immunosuppressive and antibacterial drugs, which maintain transplant organ function, can expose the transplant patient to increased risk of foodborne illness from bacteria, viruses, fungi, and parasites. This review article describes the clinical consequences, sources of foodborne illness, and food safety practices needed to minimize risks to the solid organ transplant patient who must take lifelong immunosuppressive drugs. All members of the transplant team share responsibility for education of the solid organ transplant patient in preventing infections. The registered dietitian, as part of the transplant team, is the recognized expert in providing food safety education in the context of medical nutrition therapy to solid organ transplant patients, the patients' caregivers, and other healthcare providers.
Morita, T; Tsunoda, J; Inoue, S; Chihara, S; Oka, K
Although valid measurement of the severity of terminal delirium is of great importance in palliative care settings, existing instruments have considerable limitations. In order to quantify patients' communication capacity and agitated behaviour, two new operational observer-rating scales, the Communication Capacity Scale (Communication Scale) and Agitation Distress Scale (Agitation Scale), were validated. Thirty terminally ill cancer patients diagnosed with delirium were evaluated simultaneously by two palliative care physicians blinded to each other's coding using the Communication Scale and Agitation Scale. In addition, the Memorial Delirium Assessment Scale (MDAS), Delirium Rating Scale (DRS) and Sedation Scale were rated by one researcher. Both scales achieved high internal consistency and inter-rater reliability with Cronbach's alpha coefficients of 0.91 and 0.96, and Cohen's kappa values on each item of 0.72-1.00. The principal components analysis resulted in the emergence of only one component for each scale. The total score on the Communication Scale was highly associated with that of the MDAS (rho = 0.78), Sedation Scale (rho = 0.86), and cognitive items from the MDAS and DRS (rho = 0.83). The whole score on the Agitation Scale was significantly correlated with that of the DRS (rho = 0.61) and agitation items from the MDAS and DRS (rho = 0.61). In conclusion, the Communication Scale and Agitation Scale have acceptable reliability and validity to quantify patients' communication capacity and agitation symptoms of terminally ill cancer patients with delirium.
Miyashita, Mitsunori; Morita, Tatsuya; Shima, Yasuo; Kimura, Rieko; Takahashi, Mikako; Adachi, Isamu
We evaluated nurse views on the adequacy of decision-making discussion among nurses and physicians regarding artificial hydration for terminally ill cancer patients and nurse distress arising from artificial hydration issues, as well as factors related to this distress. A self-administered questionnaire consisting of 4 questions about nurse views of discussions regarding artificial hydration and 6 questions about nurse distress arising from artificial hydration issues was distributed in participating institutions in October 2002 and returned by mail. A total of 3328 responses (79%) were analyzed. Almost half of the nurses felt that discussion of terminal hydration issues was insufficient. Among responses, 39% of oncology nurses and 78% of palliative care unit (PCU) nurses agreed that patients and medical practitioners discuss the issue of artificial hydration adequately, and 49% and 79%, respectively, agreed that medical practitioners discuss the issue of artificial hydration with other physicians adequately. As for distress on behalf of patients and families who refuse artificial hydration, 44% of oncology nurses and 57% of PCU nurses experienced such distress for patients, and 19% and 28% did so for families, respectively. Furthermore, 48% of oncology nurses and 47% of PCU nurses experienced distress arising from disagreements among medical practitioners about withholding artificial hydration, whereas 44% and 43% experienced distress about medical practitioners refusing artificial hydration, respectively. Discussion among care providers regarding artificial hydration is insufficient, particularly in general wards. Medical practitioners caring for terminally ill cancer patients should engage in greater discussion among patient-centered teams and facilitate individualized decision making.
Andruszkiewicz, Anna; Basińska, Małgorzata Anna; Felsmann, Mirosława; Banaszkiewicz, Mariola; Marzec, Alicja; Kędziora-Kornatowska, Kornelia
Background Given the rising population of the elderly in modern societies, the concern for their good functioning poses a challenge for the 21st century medicine and social services. Senior citizens are at an increased risk of developing chronic conditions, which in turn increase discomfort associated with physiological processes of aging. Sensations of pain have a particular influence on the mentioned discomfort, and pain is prevalent among older people. Therefore, from the perspective of an elderly person and senior care, it is crucial to identify determinants of effective coping with chronic pain. Objectives The aim of the research was to assess the relationship between a sense of coherence (SOC) and pain-coping strategies in chronically ill seniors. A total number of 188 individuals were included in the study, of whom 117 were female subjects and 71 were male subjects, with a mean age of 68.38 (standard deviation [SD] =6.35) years in the studied group. Subjects were sampled based on a diagnosis of a chronic medical illness with chronic pain as one of the major symptoms. Methods The Polish adaptation of the Orientation to Life Questionnaire (SOC-29) to assess an SOC, the Coping Strategies Questionnaire (CSQ) to assess pain-coping strategies, and the visual analog scale (VAS) to assess pain intensity were used in the study. Results and conclusion The mean score of respondents’ SOC was 133.44 (SD =24.35). Among most common pain-coping strategies used by the respondents were prayer and hope, and the declaration of coping with pain while redefining pain was the least often used coping strategy in the studied group. Individuals with stronger SOC were less prone to catastrophizing and more often declared that they were coping with and could control and reduce pain. PMID:28223789
von Haehling, Stephan; Anker, Markus S.
Abstract Cachexia is a serious clinical consequence of almost all chronic diseases when reaching advanced stages. Its prevalence ranges from 5–15% in end‐stage chronic heart failure to 50–80% in advanced malignant cancer. Cachexia is also frequently occurring in patients with chronic kidney disease, chronic obstructive pulmonary disease (COPD) or neurological diseases, and rheumatoid arthritis. Mortality rates of patients with cachexia range from 15–25% per year in severe COPD through 20–40% per year in patients with chronic heart failure or chronic kidney disease to 20–80% in cancer cachexia. In the industrialized world (North America, Europe, and Japan) where epidemiological data are to some degree available, the overall prevalence of cachexia (due to any disease and not necessarily associated with hospital admission) is growing with the growth of the chronic illness prevalence, and it currently affects around 0.5–1.0% of the population, i.e. around 6–12 million people. From this, one can estimate that 1.5–2 million deaths are occurring in patients with cachexia per year. It is also a very significant health problem in other parts of the globe, but epidemiological data are scarce. The multifactorial nature of cachexia is now much better understood, and particularly, the role of inflammatory mediators and the imbalance of anabolism and catabolism are considered important therapeutic targets. Several approaches to develop cachexia and muscle wasting treatments have failed to be successful in phase III clinical trials, but new approaches are in development. Given the high prevalence and very high mortality associated with cachexia, advances are urgently needed for patients worldwide. PMID:27891294
von Haehling, Stephan; Anker, Markus S; Anker, Stefan D
Cachexia is a serious clinical consequence of almost all chronic diseases when reaching advanced stages. Its prevalence ranges from 5-15% in end-stage chronic heart failure to 50-80% in advanced malignant cancer. Cachexia is also frequently occurring in patients with chronic kidney disease, chronic obstructive pulmonary disease (COPD) or neurological diseases, and rheumatoid arthritis. Mortality rates of patients with cachexia range from 15-25% per year in severe COPD through 20-40% per year in patients with chronic heart failure or chronic kidney disease to 20-80% in cancer cachexia. In the industrialized world (North America, Europe, and Japan) where epidemiological data are to some degree available, the overall prevalence of cachexia (due to any disease and not necessarily associated with hospital admission) is growing with the growth of the chronic illness prevalence, and it currently affects around 0.5-1.0% of the population, i.e. around 6-12 million people. From this, one can estimate that 1.5-2 million deaths are occurring in patients with cachexia per year. It is also a very significant health problem in other parts of the globe, but epidemiological data are scarce. The multifactorial nature of cachexia is now much better understood, and particularly, the role of inflammatory mediators and the imbalance of anabolism and catabolism are considered important therapeutic targets. Several approaches to develop cachexia and muscle wasting treatments have failed to be successful in phase III clinical trials, but new approaches are in development. Given the high prevalence and very high mortality associated with cachexia, advances are urgently needed for patients worldwide.
Fleary, Sasha A.; Heffer, Robert W.
The purpose of this study was to explore the continuing impact of growing up with an ill sibling on well siblings' late adolescent functioning. Forty late adolescents (Mage = 18.78, SD = 0.83), who identified themselves as growing up with an ill sibling, completed a semistructured interview, demographic questionnaire, Personality Assessment Screener, and My Feelings and Concerns Sibling Questionnaire. Participants reported clinically significant problems on some PAS scales, and gender differences were found for acting out and alienation. Significant relationships were reported for communication and social withdrawal and alienation. Both positive and negative themes about the experience were elicited from the responses in the semistructured interview. This study provides evidence for some lingering negative effects of growing up with an ill sibling on well siblings' late adolescent functioning. Additionally, evidence for siblings' development of positive characteristics that may act as protective variables as they face the stressors of late adolescence was also highlighted. PMID:24959574
Chronic therapy-resistant low back pain is a major problem in medical care. In Germany there are many millions concerned, and the treatment expenses range at the top. Many of these patients underwent non-successful operations at the vertebral column and suffered a long-lasting odyssey of therapies before they are treated psychosomatically for the first time. Chronic low back pain is a disease including social, psychological as well as physiological aspects, and not only a problem of bones, muscles, or intervertebral disks. The problem is similar to that of fibromyalgia. On the basis of 9,000 case reports obtained during psychosomatic orthopedic treatment, character structures, unsolved problems of life and repressed emotional disturbances such as anger, jealousy, fear, and mourning could be identified as major psychosomatic risk factors for chronic low back pain. There is a high coincidence with other psychosomatically influenced diseases such as gastric and duodenal ulcera, asthma bronchiale, migraine with depressions, anxiety disorders, character neuroses, and narcissistic and other structural disturbances of the self. Exclusively somatic treatments without considering the existential situation and psychological methods hold the danger of a symptom shifting. The inpatient treatment from 9 a.m. to 5 p.m. ('Tagesklinik') with a combination of medical, physiotherapeutic and psychotherapeutic methods promotes a social training that counteracts the increasing constrictions in the accustomed life surroundings caused by low back pain. Chronic low back pain is an 'illness of the upright walk' in an anthropological, ethical sense. Considering low back pain as a strictly somatic disease is a modern myth of a medical treatment without existential understanding of human illness. It provokes failure of treatment and an enhancement of treatment cost.
Luckett, Tim; Disler, Rebecca; Hosie, Annmarie; Johnson, Miriam; Davidson, Patricia; Currow, David; Sumah, Anthony; Phillips, Jane
Chronic breathlessness is a common, burdensome and distressing symptom in many advanced chronic illnesses. Self-management strategies are essential to optimise treatment, daily functioning and emotional coping. People with chronic illness commonly search the internet for advice on self-management. A review was undertaken in June 2015 to describe the content and quality of online advice on breathlessness self-management, to highlight under-served areas and to identify any unsafe content. Google was searched from Sydney, Australia, using the five most common search terms for breathlessness identified by Google Trends. We also hand-searched the websites of national associations. Websites were included if they were freely available in English and provided practical advice on self-management. Website quality was assessed using the American Medical Association Benchmarks. Readability was assessed using the Flesch-Kincaid grades, with grade 8 considered the maximum acceptable for enabling access. Ninety-one web pages from 44 websites met the inclusion criteria, including 14 national association websites not returned by Google searches. Most websites were generated in the USA (n=28, 64%) and focused on breathing techniques (n=38, 86%) and chronic obstructive pulmonary disease (n=27, 61%). No websites were found to offer unsafe advice. Adherence to quality benchmarks ranged from 9% for disclosure to 77% for currency. Fifteen (54%) of 28 written websites required grade ⩾9 reading level. Future development should focus on advice and tools to support goal setting, problem solving and monitoring of breathlessness. National associations are encouraged to improve website visibility and comply with standards for quality and readability.
Pearce, Michelle J.; Koenig, Harold G.; Robins, Clive J.; Nelson, Bruce; Shaw, Sally F.; Cohen, Harvey J.; King, Michael B.
Intervention studies have found that psychotherapeutic interventions that explicitly integrate clients’ spiritual and religious beliefs in therapy are as effective, if not more so, in reducing depression than those that do not for religious clients. However, few empirical studies have examined the effectiveness of religiously (vs. spiritually) integrated psychotherapy, and no manualized mental health intervention had been developed for the medically ill with religious beliefs. To address this gap, we developed and implemented a novel religiously integrated adaptation of cognitive–behavioral therapy (CBT) for the treatment of depression in individuals with chronic medical illness. This article describes the development and implementation of the intervention. First, we provide a brief overview of CBT. Next, we describe how religious beliefs and behaviors can be integrated into a CBT framework. Finally, we describe Religiously Integrated Cognitive Behavioral Therapy (RCBT), a manualized therapeutic approach designed to assist depressed individuals to develop depression-reducing thoughts and behaviors informed by their own religious beliefs, practices, and resources. This treatment approach has been developed for 5 major world religions (Christianity, Judaism, Islam, Buddhism, and Hinduism), increasing its potential to aid the depressed medically ill from a variety of religious backgrounds. PMID:25365155
Holroyd, Jean; Guthrie, Donald
Parents of children with neuromuscular disease, cystic fibrosis, and renal disease were compared with parents of control subjects matched by age to the clinical cases. The three clinical groups exhibited different patterns of stressful response, consistent with the nature of their illnesses and the requirements for care imposed on the families.…
Mitchell, Christopher G.; Linsk, Nathan L.
New treatment advances have radically altered the course of HIV illness and created new challenges for HIV-affected individuals, families, and communities. This article provides a conceptual framework for understanding HIV in the multiple contexts of the client's culture, strengths, life course, and biomedical progression. The article concludes…
Schoeneman, Sandra Z.; And Others
Identified wives (N=56) of hemodialysis patients at risk for problems adapting to their husband's illness, and explored personality variables that might enhance coping. Results showed greater external locus of control was related to poorer adjustment, but greater internal locus of control was not related to better adjustment. (Author/JAC)
Mohammed, Hussein Jassim; Kamel, Andaleeb Abu
Health care systems in many countries are moving towards outpatient care in which family members are central in providing care for patients with life-threatening illness. Family members and friends haven't knowledge and skills to become caregivers as many studies found that, the need to involve in such program to enhance their ability to be…
Hurtig, Anita Landau; And Others
The study with 70 children and adolescents with sickle cell disease did not support the hypothesis that illness severity (measured by frequency of hospitalization) would affect adjustment (measured by IQ, self-esteem, social and personal adjustment, behavioral problems, school performance, and peer relations). (Author/DB)
Macedo, Eliza Cristina; da Silva, Leila Rangel; Paiva, Mirian Santos; Ramos, Maria Natália Pereira
Abstract Objective: to identify and analyze the evidence available regarding evaluation of burden and quality of life of mothers who are caregivers for children and adolescents with chronic illnesses. Method: an integrative review, undertaken in the electronic sources MEDLINE; Academic Search Premier; CINAHL; LILACS; SciELO and PubMed, between 2010 and 2014. Results: among the 22 documents selected, there was a predominance of convenience samples and non-experimental transversal designs, at the levels IV and III2. The caregiver burden scales used were the Zarit Burden Interview and Montgomery-Borgatta Caregiver Burden Scale-Revised along with the following instruments for evaluating quality of life: The World Health Organization Quality of Life-BREF Scale; Self-report questionnaires; The Ulm Quality of Life Inventory for Parents of chronically ill children; Asthma Caregiver Quality of Life Questionnaire; and the Nottingham Health Profile. Quality-of-life appears to be influenced in a complex and interrelated way by the physical and mental health of the mothers who are caregivers, in accordance with their level of independence, social relationships, environment, and the extent to which they see themselves as burdened. Conclusion: the revealing of the results for the evaluation of burden and quality of life of mothers who are caregivers has implications for the planning and implementation of effective interventions, by the multidisciplinary team, if they are to relieve the burden. PMID:26444180
August, Kristin J; Sorkin, Dara H
The attempts of social network members to regulate individuals' health behaviors, or health-related social control, is one mechanism by which social relationships influence health. Little is known, however, about whether this process varies in married versus unmarried individuals managing a chronic illness in which health behaviors are a key component. Researchers have proposed that social control attempts may have dual effects on recipients' well-being, such that improved health behaviors may occur at the cost of increased emotional distress. The current study accordingly sought to examine marital status differences in the sources, frequency, and responses to health-related social control in an ethnically diverse sample of 1477 patients with type 2 diabetes from southern California, USA. Results from two-way ANCOVAs revealed that married individuals reported their spouses most frequently as sources of social control, with unmarried women naming children and unmarried men naming friends/neighbors most frequently as sources of social control. Married men reported receiving social control most often, whereas unmarried men reported receiving social control least often. Regression analyses that examined behavioral and emotional responses to social control revealed that social control using persuasion was associated with better dietary behavior among married patients. Results also revealed a complex pattern of emotional responses, such that social control was associated with both appreciation and hostility, with the effect for appreciation most pronounced among women. Findings from this study highlight the importance of marital status and gender differences in social network members' involvement in the management of a chronic illness.
Holton, Christine H; Proudfoot, Judith G; Jayasinghe, Upali W; Grimm, Jane; Bubner, Tanya K; Winstanley, Julie; Harris, Mark F; Beilby, Justin J
Our aim was to develop a tool to identify specific features of the business and financial management of practices that facilitate better quality care for chronic illness in primary care. Domains of management were identified, resulting in the development of a structured interview tool that was administered in 97 primary care practices in Australia. Interview items were screened and subjected to factor analysis, subscales identified and the overall model fit determined. The instrument's validity was assessed against another measure of quality of care. Analysis provided a four-factor solution containing 21 items, which explained 42.5% of the variance in the total scores. The factors related to administrative processes, human resources, marketing analysis and business development. All scores increased significantly with practice size. The business development subscale and total score were higher for rural practices. There was a significant correlation between the business development subscale and quality of care. The indicators of business and financial management in the final tool appear to be useful predictors of the quality of care. The instrument may help inform policy regarding the structure of general practice and implementation of a systems approach to chronic illness care. It can provide information to practices about areas for further development.
Smith, Tyler C; Powell, Teresa M; Jacobson, Isabel G; Smith, Besa; Hooper, Tomoko I; Boyko, Edward J; Gackstetter, Gary D
Symptoms and illnesses reported by veterans of the 1991 Gulf War era are a cause of potential concern for those military members who have deployed to the Gulf region in support of more recent contingency operations in Iraq and Afghanistan. In the present study, we quantified self-reported symptoms from participants in the Millennium Cohort Study, a prospective study representing all US service branches, including both active duty and Reserve/National Guard components (2001-2008). Self-reported symptoms were uniquely compared with those in a cohort of subjects from the 1991 Gulf War to gain context for the present report. Symptoms were then aggregated to identify cases of chronic multisymptom illness (CMI) based on the case definition from the Centers for Disease Control and Prevention. The prevalence of self-reported CMI symptoms was compared with that collected in 1997-1999 from a study population of US Seabees from the 1991 Gulf War, as well as from deployed and nondeployed subgroups. Although overall symptom reporting was much less in the Millennium Cohort than in the 1991 Gulf War cohort, a higher prevalence of reported CMI was noted among deployed compared with nondeployed contemporary cohort members. An increased understanding of coping skills and resilience and development of well-designed screening instruments, along with appropriate clinical and psychological follow-up for returning veterans, might help to focus resources on early identification of potential long-term chronic disease manifestations.
Ferro, Mark A; Boyle, Michael H
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.
Stiekema, Annemarie P. M.; Liemburg, Edith J.; van der Meer, Lisette; Castelein, Stynke; Stewart, Roy; van Weeghel, Jaap; Aleman, André; Bruggeman, Richard
Research suggests a two factor structure for negative symptoms in patients with psychotic disorders: social amotivation (SA) and expressive deficits (ED). Applying this two-factor structure in clinical settings may provide valuable information with regard to outcomes and to target treatments. We aimed to investigate 1) whether the factor structure is also supported in chronically ill patients with a psychotic disorder and 2) what the relationship is between these factors and functioning (overall functioning and living situation), depressive symptoms and quality of life. 1157 Patients with a psychotic disorder and a duration of illness of 5 years or more were included in the analysis (data selected from the Pharmacotherapy Monitoring Outcome Survey; PHAMOUS). A confirmatory factor analysis was performed using items of the Positive and Negative Syndrome Scale that were previously identified to reflect negative symptoms (N1-4, N6, G5, G7, G13, G16). Subsequently, regression analysis was performed on outcomes. The results confirmed the distinction between SA (N2, N4, G16) and ED (N1, N3, N6, G5, G7, G13) in chronically ill patients. Both factors were related to worse overall functioning as measured with the Health of the Nation Outcome Scales, ED was uniquely associated with residential living status. Higher scores for SA were associated with more depressive symptoms and worse quality of life. Thus, SA is most strongly related to level of social-emotional functioning, while ED are more related to living situation and thereby are indicative of level of everyday functioning. This subdivision may be useful for research purposes and be a valuable additional tool in clinical practice and treatment development. PMID:26895203
Brink, A J; Richards, G A; Lautenbach, E E G; Rapeport, N; Schillack, V; van Niekerk, L; Lipman, J; Roberts, J A
The impact of decreased serum albumin concentrations on free antibiotic concentrations in non-critically ill patients is poorly described. This study aimed to describe the pharmacokinetics of a high-dose regimen of teicoplanin, a highly protein-bound antibiotic, in non-critically ill patients with hypoalbuminaemia. Ten patients with chronic bone sepsis and decreased serum albumin concentrations (<35 g/L) receiving teicoplanin 12 mg/kg 12-hourly intravenously for 48 h followed by 12 mg/kg once daily were enrolled. Surgical debridement was performed on Day 3. Samples of venous blood were collected pre-infusion and post-infusion during the first 4 days of therapy. Total and free teicoplanin concentrations were assayed using validated chromatographic methods. The median serum albumin concentration for the cohort was 18 (IQR 15-24) g/L. After 48 h, the median (IQR) free trough (fC(min)) and total trough (tC(min)) concentrations were 2.90 (2.67-3.47) mg/L and 15.54 (10.28-19.12) mg/L, respectively, although trough concentrations declined thereafter. Clearance of the free concentrations was significantly high relative to the total fraction at 38.6 (IQR 29.9-47.8) L/h and 7.0 (IQR 6.8-9.8) L/h, respectively (P<0.001). Multiple linear regression analysis demonstrated that whereas total teicoplanin concentration did not impact on free concentrations (P=0.174), albumin concentration did (P<0.001). This study confirms the significant impact of hypoalbuminaemia on free concentrations of teicoplanin in non-critically ill patients, similar to that in critically ill patients. Furthermore, the poor correlation with total teicoplanin concentration suggests that therapeutic drug monitoring of free concentrations should be used in these patients.
Schmidt, Christa K.; Welsh, Anne C.
Individuals coping with the chronic or terminal illness of a family member are presented with a unique challenge that may influence their adjustment and overall well-being. This study investigated variables that relate to college adjustment and subjective well-being, including attachment, social support, coping, and illness-related constructs, in…
Harris, Bronwyn; Eyles, John; Moshabela, Mosa
Achieving equitable access to health care is an important policy goal, with access influenced by affordability, availability, and acceptability of specific services. We explore patient narratives from a 5-year program of research on health care access to examine relationships between social constructions of illness and the acceptability of health services in the context of tuberculosis treatment and antiretroviral therapy in South Africa. Acceptability of services seems particularly important to the meanings patients attach to illness and care, whereas—conversely—these constructions appear to influence what constitutes acceptability and hence affect access to care. We highlight the underestimated role of individually, socially, and politically constructed healthworlds; traditional and biomedical beliefs; and social support networks. Suggested policy implications for improving acceptability and hence overall health care access include abandoning patronizing approaches to care and refocusing from treating “disease” to responding to “illness” by acknowledging and incorporating patients’ healthworlds in patient–provider interactions. PMID:25829509
van der Wel, Kjetil A; Dahl, Espen; Thielen, Karsten
The aim of this paper is to examine educational inequalities in the risk of non-employment among people with illnesses and how they vary between European countries with different welfare state characteristics. In doing so, the paper adds to the growing literature on welfare states and social inequalities in health by studying the often overlooked 'sickness'-dimension of health, namely employment behaviour among people with illnesses. We use European Union Statistics on Income and Living Conditions (EU-SILC) data from 2005 covering 26 European countries linked to country characteristics derived from Eurostat and OECD that include spending on active labour market policies, benefit generosity, income inequality, and employment protection. Using multilevel techniques we find that comprehensive welfare states have lower absolute and relative social inequalities in sickness, as well as more favourable general rates of non-employment. Hence, regarding sickness, welfare resources appear to trump welfare disincentives.
Walker, D A; Pearman, D
Since the 1930s, therapeutic recreation (TR) has been used in the UK to help young people cope with severe illness. This article surveys four systematic reviews and poses five questions that a paediatrician might ask: (1) How to select a TR experience and for which patient?; (2) Does TR augment brain injury rehabilitation?; (3) How do TR camps benefit children?; (4) Is TR cost-effective?; (5) What additional research is needed? Methodological weaknesses in research impair the strength of conclusions. There is little research about matching of TR experiences to individuals, disease groups or age groups, or about the effect of TR camps in brain injury rehabilitation. TR interventions enhance self-esteem, disease knowledge, emotional well-being, adaptation to illness and symptom control. Educationalists suggest that self-esteem is helped most in mid to late adolescence. Where studied, TR camps are safe, which reassures parents. There have been few studies on cost-effectiveness. We conclude that young people benefit from TR. However, better-quality research would help select and further develop these experiences for young people with ill health.
The 1981-2 General Household Survey showed steep class gradients in limiting longstanding illness for men and women aged 20-59 that were very similar to the class gradients in mortality in the 1979-83 decennial supplement. The class gradient for women classified by their husband's occupation was stronger than that when they were classified by their own occupation. Men and women who lacked paid employment reported poorer health than the employed and were concentrated in the lower social classes. Inequalities in ill health due to class were partly caused by the higher proportion in the lower social classes who were without work. Class differences in ill health still existed, however, among the currently employed, with unskilled men reporting particularly poor health and women manual workers reporting poorer health than women in non-manual jobs. Class differences were greater for the occupationless than for the currently employed. Thus class remains an important indicator of health inequalities despite the current high level of unemployment. PMID:3107698
Background Unattached patients do not have a regular primary care provider. Initiatives are being developed to increase attachment rates across Canada. Most existing attention paid to patient unattachment has focused on quantifying the problem and health system costs. Our purpose is to qualitatively identify the implications of chronically ill patients’ experiences of unattachment for health policy and planning to provide policy-relevant insights for Canadian attachment initiatives. Methods Three focus groups were conducted with marginalized chronically ill individuals residing in a mid-sized city in British Columbia who are unattached to a family doctor. We use the term marginalized as a descriptor to acknowledge that by virtue of their low socio-economic status and lack of attachment the participants are marginalized in Canada’s health care system Focus groups were structured as an open conversation organized around a series of probing questions. They were digitally recorded and transcribed verbatim. Thematic analysis was employed. Results Twenty-six individuals participated in the focus groups. The most common chronic illnesses reported were active drug addiction or recovery (and their associated symptoms), depression, arthritis, and hepatitis C. Participants identified life transitions as being the root cause for not having a family doctor. There was a strong sense that unsuccessful attempts to get a family doctor reflected that they were undesirable patients. Participants wanted to experience having a trusting relationship with a regular family doctor as they believed it would encourage greater honesty and transparency. One of the main health concerns regarding lack of access to a regular family doctor is that participants lacked access to preventative care. Participants were also concerned about having a discontinuous medical record due to unattachment. Conclusions Participants perceived that there are many benefits to be had by having attachment to a
Corvin, Jaime; Chan, Isabella; Tezak, Ann; Carpenter, Kelly; Aguado Loi, Claudia; Gonzales, Junius; Hoare, Ismael
Informal caregiving can be fundamental to disease management. Yet, the psychosocial, physical, and financial burden experienced by caregivers can be significant. In the US, Latinos experience increasing rates of chronic conditions, the highest uninsured rates in the country, and a growing dependence on informal caregivers. This article explores the impact of caregiving on caregivers of individuals with comorbid chronic disease and depression. Findings highlight the impact of caregiving on financial insecurity, balancing competing demands, increased emotional distress, and community supports. Findings support the inclusion of caregivers in disease management programs to enhance psychosocial outcomes for both caregivers and their patients.
Richardson, Rita C.
This paper reviews various discipline models and applies them to obtaining cooperation and compliance with medical treatment of children with chronic and acute medical conditions, especially End-Stage Renal Disease (ESRD). The definition of Other Health Impairments in the Individuals with Disabilities Education Act is cited and related to the…
Moore, Peter N.; And Others
Examines factors of anxiety in the Taylor Manifest Anxiety Scale in 150 asthma, tuberculosis, and chronic pain patients. Key cluster analysis revealed five clusters: restlessness, embarrassment, sensitivity, physiological anxiety, and self-confidence. Embarrassment is fairly dependent on the other factors. (JAC)
Berge, Jerica M.; Holm, Kristen E.
This article integrates theory and research related to boundary ambiguity in parents of children with a chronic health condition. We propose that boundary ambiguity is a risk factor for psychological distress in these parents. Clinical applications and a case example highlight how boundary ambiguity can be assessed and managed in clinical settings…
Rybarczyk, B; DeMarco, G; DeLaCruz, M; Lapidos, S; Fortner, B
The authors tested the efficacy of a mind/body wellness intervention for older adults with chronic illness. They randomly assigned 243 physician-referred patients from an urban HMO to a classroom intervention or a wait-list control group. The intervention provided instruction on mind/body relationships; relaxation training; cognitive restructuring; problem-solving; communication; and behavioral treatment for insomnia, nutrition, and exercise. At posttreatment, the intervention group had significant decreases in self-reported sleep difficulties, pain, anxiety, and depression symptoms compared with controls. The intervention also led to a significant decrease in "chance" and "powerful others" health locus of control beliefs. At 1-year follow-up, the intervention group maintained benefits in sleep and health locus of control and also reported a significant increase in health behaviors compared with controls. Pain, anxiety, and depression benefits were not maintained. This type of classroom intervention appears to have some lasting effects on health behaviors and beliefs.
Nilsson, Carina; Ohman, Marja; Söderberg, Siv
We studied the experiences of two people with serious chronic illness who used information and communication technology (ICT) to communicate with their district nurse. The study was a qualitative case study. The intervention was performed using an electronic messaging program. The program was accessible to any computer with an Internet connection. The programme consisted of different virtual rooms, where people could communicate using text messages. The participants used the program 2-4 times each week from the beginning of November 2003 to February 2004. Semistructured interviews were performed before, during and after the intervention and were analysed using thematic content analysis. The results showed that the participants' communication with the district nurse was improved because of easy accessibility and that they felt increased security. They also felt there were fewer limitations and that their everyday life was improved, which can also be seen as an improvement in care.
Khalifeh, Hind; Oram, Sian; Trevillion, Kylee; Johnson, Sonia; Howard, Louise M.
Background People with mental illness are at increased risk of intimate partner violence (IPV) victimisation, but little is known about their risk for different forms of IPV, related health impact and help-seeking. Aims To estimate the odds for past-year IPV, related impact and disclosure among people with and without pre-existing chronic mental illness (CMI). Method We analysed data from 23 222 adult participants in the 2010/2011 British Crime Survey using multivariate logistic regression. Results Past-year IPV was reported by 21% and 10% of women and men with CMI, respectively. The adjusted relative odds for emotional, physical and sexual IPV among women with versus without CMI were 2.8 (CI = 1.9–4.0), 2.6 (CI = 1.6–4.3) and 5.4 (CI = 2.4–11.9), respectively. People with CMI were more likely to attempt suicide as result of IPV (aOR = 5.4, CI = 2.3–12.9), less likely to seek help from informal networks (aOR = 0.5, CI = 0.3–0.8) and more likely to seek help exclusively from health professionals (aOR = 6.9, CI = 2.6–18.3) Conclusions People with CMI are not only at increased risk of all forms of IPV, but they are more likely to suffer subsequent ill health and to disclose exclusively to health professionals. Therefore, health professionals play a key role in addressing IPV in this population. PMID:26045349
Chan, Jessie S M; Li, Ang; Ng, Siu-Man; Ho, Rainbow T H; Xu, Aimin; Yao, Tzy-Jyun; Wang, Xiao-Min; So, Kwok-Fai; Chan, Cecilia L W
Our recent study demonstrates that adiponectin signaling plays a significant role in mediating physical exercise-exerted effects on hippocampal neurogenesis and antidepression in mice. Whether the findings can be translated to humans remains unknown. This study aimed to investigate the effects of Baduanjin Qigong exercise on adiponectin and to evaluate whether adiponectin is involved in the antidepressive effects of Qigong exercise on chronic fatigue syndrome (CFS)-like illness. This is a randomized, waitlist-controlled trial. One hundred eight female participants were randomly assigned to either Qigong exercise or waitlist groups. Sixteen 1.5-h Qigong lessons were conducted. Outcome measures were taken at three time points. Baseline adiponectin levels were negatively associated with body weight, body mass index, waist circumference, hip circumference, and waist/hip ratio in women with CFS-like illness. Compared with the waitlist control, Qigong exercise significantly reduced anxiety and depression symptoms and significantly raised plasma adiponectin levels (median = 0.8 vs. -0.1, p < 0.05). More interestingly, increases in adiponectin levels following Qigong exercise were associated with decreases in depression scores for the Qigong group (r = -0.38, p = 0.04). Moreover, adjusted linear regression analysis further identified Qigong exercise and change in adiponectin levels as the significant factors accounting for reduction of depression symptoms. Baduanjin Qigong significantly increased adiponectin levels in females with CFS-like illness. Decreases in depression symptoms were associated with increases in adiponectin levels following Qigong exercise, indicating that the potential contribution of adiponectin to Qigong exercise elicited antidepressive effects in human subjects.
Hyphantis, Thomas; Almyroudi, Augustina; Paika, Vassiliki; Goulia, Panagiota; Arvanitakis, Konstantinos
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.
Hyphantis, Thomas; Almyroudi, Augustina; Paika, Vassiliki; Goulia, Panagiota; Arvanitakis, Konstantinos
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
Wilson, Andrew; Wutzke, Sonia; Overs, Marge
Chronic diseases are the major cause of death in Australia and the biggest contributor to premature death and disability. Although prevention of chronic disease can be effective and cost-effective, it has proven difficult to systematically implement interventions that target important lifestyle-related risk factors for chronic disease such as poor nutrition, physical inactivity and harmful alcohol use. Prevention efforts targeting these lifestyle-related risk factors have had mixed success due to issues around designing and implementing effective interventions that address the complexity of risk factors, and incorporating evidence and implementing interventions at a scale, duration, intensity and quality required to achieve population effects. There is increasing recognition that multilevel, multisector approaches are required for the effective and sustained prevention of complex chronic disease. The Australian Prevention Partnership Centre, one of two National Health and Medical Research Council Partnership Centres established in 2013, is researching and developing systems perspectives to prevent lifestyle-related chronic disease in Australia. The Centre's collaborative approach is providing opportunities for researchers to work with policy makers and practitioners to develop research questions, conduct research, and analyse, interpret and disseminate the findings. As such, it is the model of interaction that is being tested as much as the specific projects. With its funding partners, the Centre has developed plans for more than 30 projects. It has also established four capacity units that will improve the gathering, sharing and use of evidence to build a prevention system in Australia. The Centre is exploring new ways to advance prevention by bringing together researchers, policy makers and practitioners to determine the information and actions needed for an effective prevention system for Australia.
Xu, X; Christiani, D C; Dockery, D W; Wang, L
Data from a random sample of 3,606 adults 40 to 69 yr of age residing in Beijing, China, were analyzed to investigate the association of reported occupational exposures to dusts and gases/fumes with the prevalence of chronic respiratory symptoms and level of pulmonary function. The prevalence of occupational dust exposure was 32%, and gas or fume exposure, 19%. After we adjusted for age, sex, area of residence, smoking status, coal stove heating, and education, an increased prevalence of chronic phlegm and breathlessness was significantly related to both types of exposures. Chronic cough was significantly related only to dust exposure, and persistent wheeze only to fume exposure. The global estimates of the relative odds of the four symptoms were 1.30 (95% CI [confidence interval] 1.09 to 1.48) and 1.27 (95% CI 1.09 to 1.48), respectively, for dusts and for gases/fumes. These two occupational exposures are associated with chronic respiratory symptoms independent of smoking, gender, and each other. There was an increasing prevalence of each symptom with increasing dust and fume exposure, represented by the index of cumulative exposure duration and exposure intensity. Linear trends for increased prevalence of chronic bronchitis and breathlessness were significant for both exposures, while the linear trend for wheeze was only significant for gases/fumes. Among subjects who did not report using coal stove heating, dust exposure was a significant predictor for FEV1, FEV1/FVC, FEF25-75, and peak expiratory flow rate (PEFR). There was also a significant decrease for FEV1 and FVC with increase of gas/fume exposure levels. Both current and former smokers appeared to be more susceptible to the effect of dusts than the never smokers.(ABSTRACT TRUNCATED AT 250 WORDS)
Vassilev, Ivaylo; Rogers, Anne; Blickem, Christian; Brooks, Helen; Kapadia, Dharmi; Kennedy, Anne; Sanders, Caroline; Kirk, Sue; Reeves, David
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
McCullough, L B; Coverdale, J; Bayer, T; Chervenak, F A
On the basis of a review of the literature, ethical clinical guidelines for the prevention of pregnancy in women with chronic mental illness have been developed. Such women are characterized as having chronically and variably impaired autonomy in terms of their ability to make decisions about health care, including family planning. The overall strategy should be to restore impaired autonomy in health care decision making. The decision-making process involves 6 steps: 1) attending to information provided by the physician; 2) absorbing, retaining, and recalling this information; 3) cognitive understanding of the significance of the information for the woman and any potential offspring; 4) evaluation of these consequences; 5) expression of both cognitive and evaluative understanding; and 6) communication of a decision based on such understanding. Patients who can negotiate this process are capable of informed consent; those who cannot should be provided with interventions aimed at improving impaired aspects of decision making. Patients who are irreversibly near the thresholds for autonomous decision making can at least assent to medical care and should be presented with alternatives that are consistent with their values. More complex is the management of patients who are irreversibly below thresholds of autonomy in their decision-making abilities. In such cases, consideration must be given to the patient's interests (e.g.., whether pregnancy is likely to pose significant mental health and physical benefits or risks), risks to possible future children (genetic and social), and the social costs. In no case is it ethically justifiable to force the most impaired mentally ill woman to accept surgical sterilization.
Downey, Lois; Engelberg, Ruth A; Standish, Leanna J; Kozak, Leila; Lafferty, William E
Improving end-of-life care is a priority in the United States, but assigning priorities for standard care services requires evaluations using appropriate study design and appropriate outcome indicators. A recent randomized controlled trial with terminally ill patients produced no evidence of benefit from massage or guided meditation, when evaluated with measures of global quality of life or pain distress over the course of patient participation. However, reanalysis using a more targeted outcome, surrogates' assessment of patients' benefit from the study intervention, suggested significant gains from massage-the treatment patients gave their highest preassignment preference ratings. The authors conclude that adding a menu of complementary therapies as part of standard end-of-life care may yield significant benefit, that patient preference is an important predictor of outcome, and that modifications in trial design may be appropriate for end-of-life studies.
Gómez-Picard, Patricia; Fuster-Culebras, Juli
The prevalence of chronic diseases is increasing, with the patients who suffer from them having greater need for healthcare. This fact forces a redirection in the health system, currently focused on the acute diseases, to achieve an efficient care. For this reason, it is necessary to work at all levels, starting with political decisions. These decisions should be based on the technical and scientific evidence available. Health planning is essential to establish care strategies, defining the actions to ensure the coordination and continuity of care, and also the redefinition of professional roles, where primary care nurses assume more competencies, becoming key professionals in the care of the chronic patient. The new model should include the professionalization of the management of health services. Information and communication technologies will play an important role in the development of strategies, but considering them as the tools that they are, allowing for the patient to be the focus of attention, and ensuring the privacy and the confidentiality.
Edwards, Catherine R; Thompson, Andrew R; Blair, Alan
The processes through which people learn to live with CFS/ME are poorly understood and have not been rigorously explored within the literature. Semi-structured interviews were conducted with eight women and analysed using interpretative phenomenological analysis. Participants initially described being 'overwhelmed' by CFS/ME. Attempts at seeking help were unsatisfactory and participants described feeling let down and disbelieved. Participants reacted to this by identifying types of 'self-help' and assertively taking more responsibility for their illness and its treatment. Acquiring social support and greater knowledge were key mediating factors in the emergence of control and acceptance. The relevance of the themes to existing research and the implications for clinical practice are considered.
Chan, Jessie S M; Ho, Rainbow T H; Wang, Chong-Wen; Yuen, Lai Ping; Sham, Jonathan S T; Chan, Cecilia L W
Background. Anxiety/depressive symptoms are common in patients with chronic fatigue syndrome- (CFS-) like illness. Qigong as a modality of complementary and alternative therapy has been increasingly applied by patients with chronic illnesses, but little is known about the effect of Qigong on anxiety/depressive symptoms of the patients with CFS-like illness. Purpose. To investigate the effects of Qigong on fatigue, anxiety, and depressive symptoms in patients with CFS-illness. Methods. One hundred and thirty-seven participants who met the diagnostic criteria for CFS-like illness were randomly assigned to either an intervention group or a waitlist control group. Participants in the intervention group received 10 sessions of Qigong training twice a week for 5 consecutive weeks, followed by home-based practice for 12 weeks. Fatigue, anxiety, and depressive symptoms were assessed at baseline and postintervention. Results. Total fatigue score [F(1,135) = 13.888, P < 0.001], physical fatigue score [F(1,135) = 20.852, P < 0.001] and depression score [F(1,135) = 9.918, P = 0.002] were significantly improved and mental fatigue score [F(1,135) = 3.902, P = 0.050] was marginally significantly improved in the Qigong group compared to controls. The anxiety score was not significantly improved in the Qigong group. Conclusion. Qigong may not only reduce the fatigue symptoms, but also has antidepressive effect for patients with CFS-like illness. Trial registration HKCTR-1200.
Yasar, Zehra; Kirakli, Cenk; Cimen, Pınar; Ucar, Zeynep Zeren; Talay, Fahrettin; Tibet, Gultekin
Introduction: Non-thyroidal illness syndrome (NTIS) is considered to be associated with adverse outcomes in intensive care unit (ICU) patients. In this study, we evaluated the association between NTIS and prolonged weaning in chronic obstructive pulmonary disease (COPD) patients admitted to the ICU. Materials and methods: In total, 125 patients with COPD admitted to our ICU who underwent invasive mechanical ventilation (MV) were enrolled. We collected each patient’s baseline characteristics including Acute Physiology and Chronic Health Evaluation (APACHE) II score, body mass index (BMI), and thyroid hormones 24 h after ICU admission. The presence of pulmonary infection was also recorded. The primary outcome was prolonged weaning, defined as patients who failed at least three weaning attempts or required > 7 days of weaning after the first spontaneous breathing trial. Results: Of the 127 patients studied, 64 had normal thyroid function tests and 61 had NTIS. Patients with NTIS had significantly higher APACHE II scores, prolonged weaning, and pulmonary infection. Patients with NTIS had a higher risk for prolonged weaning (odds ratio, OR = 3.21; 95% CI = 1.31-7.83).The presence of pulmonary infection was also an independent risk factors for prolonged weaning. Conclusions: NTIS may be an independent predictor for prolonged weaning in intubated COPD patients. PMID:26309710
Vaks, Yana; Bensen, Rachel; Steidtmann, Dana; Wang, Thomas D.; Platchek, Terry S.; Zulman, Donna M.; Malcolm, Elizabeth; Milstein, Arnold
Adolescents and young adults (AYA) with serious chronic illnesses face costly and dangerous gaps in care as they transition from pediatric to adult health systems. New, financially sustainable approaches to transition are needed to close these gaps. We designed a new transition model for adolescents and young adults with a variety of serious chronic conditions. Our explicit goal was to build a model that would improve the value of care for youth 15–25 years of age undergoing this transition. The design process incorporated a review, analysis, and synthesis of relevant clinical and health services research; stakeholder interviews; and observations of high-performing healthcare systems. We identified three major categories of solutions for a safer and lower cost transition to adult care: (1) Building and supporting self-management during the critical transition; (2) Engaging receiving care; and (3) Providing checklist-driven guide services during the transition. We propose that implementation of a program with these interventions would have a positive impact on all three domains of the triple aim – improving health, improving the experience of care, and reducing per capita healthcare cost. The transition model provides a general framework as well as suggestions for specific interventions. Pilot tests to assess the model’s ease of implementation, clinical effects, and financial impact are currently underway. PMID:27001100
Bonjean, Charles M., Ed.; And Others
This volume presents the proceedings of a seminar concerned with community care for the chronically mentally ill. After an introductory overview by Ira Iscoe, the first section consists of the following major addresses, presentations, and commissioned papers: (1) "The Community as the Primary Locus of Care for Persons with Serious Long-Term…
Zhu, Chang; Van Winkel, Lies
Research has shown that the continuation of education by chronically ill adolescents is an important way to avoid social isolation, psychosocial problems and the accumulation of learning difficulties. In this light, virtual learning environments (VLEs), which connect sick adolescents to their schools, play an important role in ensuring that the…
Livneh, Hanoch; Bishop, Malachy; Anctil, Tina M.
Purpose: In this article, we describe how four recent models of psychosocial adaptation to chronic illness and disability (CID) could be fruitfully conceptualized and compared by resorting to the general framework of Lewin's field theory--a theory frequently regarded as a precursor and the primary impetus to the development of the field of…
Background In Switzerland the extent to which patients with chronic illnesses receive care congruent with the Chronic Care Model (CCM) is unknown. Methods According to guidelines we translated the Assessment of Chronic Illness Care (ACIC) into German (G-ACIC). We tested the instrument in different primary care settings and compared subscales with the original testing. Results Difficulties encountered during the translation process consisted in the difference of health care settings in Switzerland and USA. However initial testing showed the G-ACIC to be a suitable instrument. The average ACIC subscale scores in Swiss managed care (MC)-, group (GP)- and single handed practices (SP) were higher for MC practices than for group- and single handed practices: Organization of the healthcare delivery system: MC mean (m) = 6.80 (SD 1.55), GP m = 5.42 (SD 0.99), SP m = 4.60 (SD 2.07); community linkages: MC m = 4.19 (SD 1.47), GP m = 4.83 (SD 1.81), SP m = 3.10 (SD 2.12); self-management support: MC m = 4.96 (SD 1.13), GP m = 4.73 (SD 1.40), SP m = 4.43 (SD 1.34); decision support: MC m = 4.75 (SD 1.06); GP m = 4.20 (SD 0.87), SP m = 3.25 (SD 1.59); delivery system design: MC m = 5.98 (SD 1.61), GP m = 5.05 (SD 2.05), SP m = 3.86 (SD 1.51) and clinical information systems: MC m = 4.34 (SD = 2.49), GP m = 2.06 (SD 1.35), SP m = 3.20 (SD 1.57). Conclusions The G-ACIC is applicable and useful for comparing different health care settings in German speaking countries. Managed care organizations seem to implement the different components of the CCM in a greater extend than group and single handed practices. However, much room exists for further improvement. PMID:20979632
Quick, Virginia M.; Byrd-Bredbenner, Carol; Neumark-Sztainer, Dianne
This paper describes the prevalence of eating disorders and disordered eating behaviors, the reasons why these practices are endorsed, and the potential consequences in youths and young adults with selected diet-related chronic health conditions (DRCHCs) and provides recommendations for eating disorder prevention interventions and research efforts. Although it remains unclear whether the prevalence of eating disorders is higher in those with DRCHCs compared with the general population, overall findings suggest that young people with DRCHCs may be at risk of endorsing disordered eating behaviors that may lead to diagnosis of an eating disorder and other health problems over the course of their treatment. Thus, health care providers should be aware that young people with DRCHCs may be at risk of eating disorders and carefully monitor psychological changes and the use of unhealthy weight control methods. It is also important to develop and evaluate theory-based interventions and disease-specific eating disorder risk screening tools that are effective in halting the progression of eating disorders and negative health outcomes in young people with chronic health conditions. PMID:23674793
Hill, Wade; Schillo, Leah; Weinert, Clarann
Social support is a key factor in illness management. Despite the positive effects of support groups, there are barriers to participation by rural dwellers in face-to-face groups. To address these barriers, a computer-based support group intervention, the Women to Women Project, was designed to provide peer support and health information through a computer-based intervention. Data from three groups (intervention, information, comparison) of woman who participated in the program were analyzed. The pattern of improvement in social support was in the anticipated direction, but not significant in the main analysis. Exploratory analysis was conducted on a vulnerable subsample of women reporting low social support and high psychosocial distress. Results suggest that improvement in social support, based on the intervention, was greater for the vulnerable subsample as compared with the sample as a whole. An effective and efficient means of providing social support and facilitating the mobilization of this support is through self-help groups; this study demonstrates that virtual support groups can increase perceived social support.
Beltra, Jean-Christophe; Bourbonnais, Sara; Bédard, Nathalie; Charpentier, Tania; Boulangé, Moana; Michaud, Eva; Boufaied, Ines; Bruneau, Julie; Shoukry, Naglaa H; Lamarre, Alain; Decaluwe, Hélène
Exhaustion of CD8(+) T cells severely impedes the adaptive immune response to chronic viral infections. Despite major advances in our understanding of the molecular regulation of exhaustion, the cytokines that directly control this process during chronicity remain unknown. We demonstrate a direct impact of IL-2 and IL-15, two common gamma-chain-dependent cytokines, on CD8(+) T-cell exhaustion. Common to both cytokine receptors, the IL-2 receptor β (IL2Rβ) chain is selectively maintained on CD8(+) T cells during chronic lymphocytic choriomeningitis virus and hepatitis C virus infections. Its expression correlates with exhaustion severity and identifies terminally exhausted CD8(+) T cells both in mice and humans. Genetic ablation of the IL2Rβ chain on CD8(+) T cells restrains inhibitory receptor induction, in particular 2B4 and Tim-3; precludes terminal differentiation of highly defective PD-1(hi) effectors; and rescues memory T-cell development and responsiveness to IL-7-dependent signals. Together, we ascribe a previously unexpected role to IL-2 and IL-15 as instigators of CD8(+) T-cell exhaustion during chronic viral infection.
Fallon, Patricia; Wisniewski, Lucene
Although evidence-based treatments (EBTs) exist for both bulimia nervosa and binge eating disorder, there is far less evidence underpinning the treatment of anorexia nervosa (AN). Furthermore, there is no clearly defined standardized approach to patients who have not responded to treatment over an extended period of time. Chronic eating disorder patients in particular might need long-term engagement with treatment providers offering a wide range of interventions. This case study highlights how an experienced private practitioner systematically employed a variety of EBT techniques for a patient with a severe, long-term eating disorder and its comorbidities, within a model of attachment and collaboration. The practice of utilizing a wide variety of EBT techniques in a systematic manner guided by clinical expertise and supported by a therapy relationship of collaboration and attachment may prove to be a fruitful avenue for future research.
Almberg, Emily S.; Cross, Paul C.; Dobson, Andrew P.; Smith, Douglas W.; Metz, Matthew C; Stahler, Daniel R.; Hudson, Peter J.
Infection risk is assumed to increase with social group size, and thus be a cost of group living. We assess infection risk and costs with respect to group size using data from an epidemic of sarcoptic mange (Sarcoptes scabiei) among grey wolves (Canis lupus). We demonstrate that group size does not predict infection risk and that individual costs of infection, in terms of reduced survival, can be entirely offset by having sufficient numbers of pack-mates. Infected individuals experience increased mortality hazards with increasing proportions of infected pack-mates, but healthy individuals remain unaffected. The social support of group hunting and territory defence are two possible mechanisms mediating infection costs. This is likely a common phenomenon among other social species and chronic infections, but difficult to detect in systems where infection status cannot be measured continuously over time.
Almberg, E S; Cross, P C; Dobson, A P; Smith, D W; Metz, M C; Stahler, D R; Hudson, P J
Infection risk is assumed to increase with social group size, and thus be a cost of group living. We assess infection risk and costs with respect to group size using data from an epidemic of sarcoptic mange (Sarcoptes scabiei) among grey wolves (Canis lupus). We demonstrate that group size does not predict infection risk and that individual costs of infection, in terms of reduced survival, can be entirely offset by having sufficient numbers of pack-mates. Infected individuals experience increased mortality hazards with increasing proportions of infected pack-mates, but healthy individuals remain unaffected. The social support of group hunting and territory defence are two possible mechanisms mediating infection costs. This is likely a common phenomenon among other social species and chronic infections, but difficult to detect in systems where infection status cannot be measured continuously over time.
Almberg, E S; Cross, P C; Dobson, A P; Smith, D W; Metz, M C; Stahler, D R; Hudson, P J; Festa-Bianchet, Marco
Infection risk is assumed to increase with social group size, and thus be a cost of group living. We assess infection risk and costs with respect to group size using data from an epidemic of sarcoptic mange (Sarcoptes scabiei) among grey wolves (Canis lupus). We demonstrate that group size does not predict infection risk and that individual costs of infection, in terms of reduced survival, can be entirely offset by having sufficient numbers of pack-mates. Infected individuals experience increased mortality hazards with increasing proportions of infected pack-mates, but healthy individuals remain unaffected. The social support of group hunting and territory defence are two possible mechanisms mediating infection costs. This is likely a common phenomenon among other social species and chronic infections, but difficult to detect in systems where infection status cannot be measured continuously over time. PMID:25983011
Harkness, Joseph; Newman, Sandra J; Salkever, David
Objective To determine the effects of housing and neighborhood features on residential instability and the costs of mental health services for individuals with chronic mental illness (CMI). Data Sources Medicaid and service provider data on the mental health service utilization of 670 individuals with CMI between 1988 and 1993 were combined with primary data on housing attributes and costs, as well as census data on neighborhood characteristics. Study participants were living in independent housing units developed under the Robert Wood Johnson Foundation Program on Chronic Mental Illness in four of nine demonstration cities between 1988 and 1993. Study Design Participants were assigned on a first-come, first-served basis to housing units as they became available for occupancy after renovation by the housing providers. Multivariate statistical models are used to examine the relationship between features of the residential environment and three outcomes that were measured during the participant's occupancy in a study property: residential instability, community-based service costs, and hospital-based service costs. To assess cost-effectiveness, the mental health care cost savings associated with some residential features are compared with the cost of providing housing with these features. Data Collection/Extraction Methods Health service utilization data were obtained from Medicaid and from state and local departments of mental health. Non-mental-health services, substance abuse services, and pharmaceuticals were screened out. Principal Findings Study participants living in newer and properly maintained buildings had lower mental health care costs and residential instability. Buildings with a richer set of amenity features, neighborhoods with no outward signs of physical deterioration, and neighborhoods with newer housing stock were also associated with reduced mental health care costs. Study participants were more residentially stable in buildings with fewer units
Kang, Young Joong; Kang, Mo-Yeol
Purpose The research aim was to identify demographic characteristics, chronic diseases, and unhealthy behaviors predicting ill health retirement in South Korea. Methods Data were collected from 15,407 individuals enrolled in the first through the fifth phases of the Korea Health Panel Survey (2008–2012) using structured questionnaires examining retirement, morbidities, and health-related behaviors. The Cox proportional hazard model was used to examine demographic and clinical characteristics’ effects on ill health retirement. Lost years of working life expectancy were calculated for demographic and clinical characteristics. Results Older, female, and manual workers were more likely to experience ill health retirement, as were respondents reporting poor health-related habits (e.g., heavy drinking, irregular meals, less sleep hours, obesity, and no regular exercise). The chronic diseases most closely associated with ill health retirement were, in order, psychiatric disease, ophthalmologic disease, neurologic disease, infectious disease, and musculoskeletal diseases. The average reduction in working life expectancy was 9.73 years. Conclusions Our study results can help contribute to the development of strategies for reducing the risk of ill health retirement and promoting sustainable labor force participation in an aging society. PMID:27930661
Hagood, James S; Lenker, Claire V; Thrasher, Staci
Children with special health care needs born today have a 90% chance of surviving into adulthood, making their transition to adult systems of care an issue that will affect almost all physicians. However, many adult generalists and specialists are not familiar with the management of chronic diseases that begin in childhood. While the public health system has made transition to appropriate adult care a priority, and many specialty organizations have endorsed this concept, there are no published studies addressing how the concept of transition can be taught to medical students or residents. The authors describe a one-week course for medical students, begun in 2001 at their institution, that addresses the transition for youth with special health care needs, emphasizing patient and family-centered care, cultural competence, and decision making in end-of-life issues. Cystic fibrosis, a common genetic disease with increasing life expectancy, is used as the model for the course. Involvement of interdisciplinary faculty, interviews with youth with special health care needs and family caregivers, readings from academic and nonacademic literature, and group discussions are presented as teaching methods. Key insights based on experience with the course are the need to include the voices of patients and families, the use of faculty from various professions and specialties to model interdisciplinary care, and the insight that problems specific to transition offer into contemporary health care financing. Future studies should measure the impact of such courses on students' knowledge of transition issues, and determine essential information required for physicians in practice.
Chao, Chia-Ter; Huang, Jenq-Wen
Background. Patients with end-stage renal disease (ESRD) have a high symptom burden, among which fatigue is highly prevalent. Many fatigue-assessing instruments exist, but comparisons among instruments in this patient population have yet to be investigated. Methods. ESRD patients under chronic hemodialysis were prospectively enrolled and seven types of fatigue instruments were administered: Brief Fatigue Inventory (BFI), Functional Assessment of Chronic Illness Therapy–Fatigue (FACIT-F), Fatigue Severity Scale (FSS), Lee Fatigue Scale (LFS), Fatigue Questionnaire (FQ), Fatigue Symptom Inventory (FSI), and Short-Form 36-Vitality (SF36-V). Using these instruments, we investigated the correlation between fatigue severity and clinical/biochemical parameters, including demographic/comorbidity profile, dialysis-related complications, and frailty severity. We used regression analysis with serum albumin and frailty severity as the dependent variables to investigate the independent correlations. Results. A total of 46 ESRD patients were enrolled (average age of 67 ± 11.6 years), and 50% of them had type 2 diabetes mellitus. Results from the seven tested instruments showed high correlation with each other. We found that the fatigue severity by FACIT-F was significantly associated with age (p = 0.03), serum albumin (p = 0.003) and creatinine (p = 0.02) levels, while SF36-V scores were also significantly associated with age (p = 0.02) and serum creatinine levels (p = 0.04). However, the fatigue severity measured by the FSS, FSI, FQ, BFI, and LFS did not exhibit these associations. Moreover, regression analysis showed that only FACIT-F scores were independently associated with serum albumin levels and frailty severity in ESRD patients. Conclusion. Among the seven fatigue-assessing instruments, only the FACIT-F yielded results that demonstrated significant and independent associations with important outcome-related features in ESRD patients. PMID:26998414
STUDY OBJECTIVE--The aim of the study was to analyse the extent to which mortality can be predicted from data on self assessed chronic illness. DESIGN--The study used data obtained from ongoing surveys of living conditions conducted by Statistics Sweden using annual interviews of cohorts of about 8000 people. SETTING--The study was a population based survey of the whole of Sweden. PARTICIPANTS--The analysis involved a group of 25,586 respondents (males 12,812, females 12,774), aged 25-74 years, interviewed in 1977 and 1979-81. MEASUREMENTS AND RESULTS--Mortality and occupational health selection were analysed in different occupational categories. The association between mortality and self reported morbidity was assessed. Level of physical strain at work was associated with mortality in men. Occupational health selection could be detected for men but not for women when mortality from all causes was investigated. Self assessment of health predicted mortality. CONCLUSIONS--Subjective assessments of health through surveys are valuable as predictors of mortality for both men and women. PMID:2348141
Background Health related quality of life (HRQoL) is an important subjectively evaluated outcome of adolescents physical, mental, and social functioning. It gives us the possibility to assess the disease impact on life of adolescents, and to sort out target groups of adolescents for future psychological interventions. The objective of this cross-sectional survey was to study HRQoL in 173 adolescents with chronic physical illness (CPI - diabetes, asthma, and epilepsy), and to find HRQoL predictors in each disease group. Methods Disease-specific questionnaires were completed by each adolescent recruited from the local outpatient clinic; mothers answered the questions on socioeconomic status (SES); and the patients’ clinicians evaluated the severity of the disease. Results A high proportion of adolescents in each disease specific sample reported moderate to high levels of HRQoL. Gender was the most prominent predictor of HRQoL in all three studied groups, while disease severity predicted HRQoL in the diabetic group and to some extent in the asthma group. Conclusions Our results provide evidence that adolescents with diabetes, asthma, and epilepsy in northern Russia maintain relatively moderate to high levels of HRQoL. The domains affecting HRQoL were related to both disease-specific (severity) and non-disease factors (gender and SES). Our study suggests that future psychosocial interventions should focus on aspects of CPI impacting adolescents in gendered ways, furthermore taking into account disease specific factors. PMID:24460738
Trucco, E; Cameron, J R; Dhillon, B; Houston, J G; van Beek, E J R
The black void behind the pupil was optically impenetrable before the invention of the ophthalmoscope by von Helmholtz over 150 years ago. Advances in retinal imaging and image processing, especially over the past decade, have opened a route to another unexplored landscape, the retinal neurovascular architecture and the retinal ganglion pathways linking to the central nervous system beyond. Exploiting these research opportunities requires multidisciplinary teams to explore the interface sitting at the border between ophthalmology, neurology and computing science. It is from the detail and depth of retinal phenotyping that novel metrics and candidate biomarkers are likely to emerge. Confirmation that in vivo retinal neurovascular measures are predictive of microvascular change in the brain and other organs is likely to be a major area of research activity over the next decade. Unlocking this hidden potential within the retina requires integration of structural and functional data sets, that is, multimodal mapping and longitudinal studies spanning the natural history of the disease process. And with further advances in imaging, it is likely that this area of retinal research will remain active and clinically relevant for many years to come. Accordingly, this review looks at state-of-the-art retinal imaging and its application to diagnosis, characterization and prognosis of chronic illness or long-term conditions. PMID:24936979
Rosser, Benjamin A; Vowles, Kevin E; Keogh, Edmund; Eccleston, Christopher; Mountain, Gail A
A systematic review was conducted to investigate the use of technology in achieving behaviour change in chronic illness. The areas reviewed were: (1) methods employed to adapt traditional therapy from a face-to-face medium to a computer-assisted platform; (2) targets of behaviour change; and (3) level of human (e.g. therapist) involvement. The initial literature search produced 2032 articles. A total of 45 articles reporting 33 separate interventions met the inclusion/exclusion criteria and were reviewed in detail. The majority of interventions reported a theoretical basis, with many arising from a cognitive-behavioural framework. There was a wide range of therapy content. Therapist involvement was reported in 73% of the interventions. A common problem was high participant attrition, which may have been related to reduced levels of human interaction. Instigating successful behaviour change through technological interventions poses many difficulties. However, there are potential benefits of delivering therapy in this way. For people with long-term health conditions, technological self-management systems could provide a practical method of understanding and monitoring their condition, as well as therapeutic guidance to alter maladaptive behaviour.
Riba Bellera, Lydia; Boixadera Vendrell, Mireia; Buendía Surroca, Carmen; Martorell Poveda, Maria Antònia; Piñeiro Méndez, Pilar; Zamora Sánchez, Juan José
The concepts of "power" and "empowerment" are used in various disciplines, both political and social. Now are these terms frequently in the field of health. Our goal is to know its meaning as a synonym of expressions: "energy", "force", "domain", "vigour", "power", "capacity", "authority" and "control", which have been always within our practice nurse's own lexicon. Semantically analyzing them will help us in the understanding of its nuance. The literature review facilitates their understanding and allows us to link these words within the management of care. In this way we can propose diagnoses, interventions and outcomes specifically related to these concepts, which will help us optimize the efficiency in the management of care plans. The purpose of various collective nurses from different institutions is that the person is able to not generate dependencies and have the option of choosing your own lifestyle according to their culture and environment, independently or with the help. Generate knowledge is to generate power. The person should be educated and informed, to be expert and active and taking action to help control and minimize the progression of your health problem chronic and its possible complications. We are in the process of reformulation of the health system, whether it is private or public, and is necessary to know the power of the various actors involved in the management of the care to us. Each of these main actors--person ill, family/caregiver or nurse--has to know what is his role in this process.
Background 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. Methods/Design 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. Discussion A trial of in-hospital care coordination may
Restorick Roberts, Amy; Betts Adams, Kathryn; Beckette Warner, Camille
This mixed-methods study examined the subjective experience of living with chronic illness and identified barriers to self-care. Community-dwelling older women with chronic illness completed an initial (N = 138) and follow-up mailed survey 6 months later (N = 130). On average, participants reported four comorbid health conditions and the corresponding physical pain, activities curtailed or relinquished, and time and energy focused on managing health. Only 34% of participants practiced all 10 key self-care behaviors. Reported barriers to self-management included pain, lack of financial resources, and worry. In the regression analysis, having more depressive symptoms was a significant predictor of challenges with self-care behaviors.
Valera, Pamela; Kratz, Molly
Summary Former inmates encounter a variety of challenges when returning to their community, including poor health status and limited access to healthcare services. This qualitative study examined how former male inmates with chronic conditions perceived, understood, managed, and coped with their illnesses. Findings: The participants were Black and Puerto Rican, with a mean age of 47 years, who were interviewed within three years of their release. Participants reported at least one chronic condition, with 21 HIV-negative men using chaos narratives to depict their approach to disease management. Nine HIV-positive men used quest narratives to present their illnesses and were immediately linked to supportive services, enabling them to overcome the barriers to community reintegration. Applications: Health interventions in the area of forensic social work ought to focus on conducting Medicaid outreach and enrollment efforts prior to correctional facility discharge. PMID:25419175
Russell, Amina; Van Woensel, William; Abidi, Samina Raza
The objective of this study is to determine if shared decisions for managing non-critical chronic illness, made through an online biomedical technology intervention, us feasible and usable. The technology intervention incorporates behavioural and decision theories to increase patient engagement, and ultimately long term adherence to health behaviour change. We devised the iheart web intervention as a "proof of concept" in five phases. The implementation incorporates the Vaadin web application framework, Drools, EclipseLink and a MySQL database. Two-thirds of the study participants favoured the technology intervention, based on Likert-scale questions from a post-study questionnaire. Qualitative analysis of think aloud feedback, video screen captures and open-ended questions from the post-study questionnaire uncovered six main areas or themes for improvement. We conclude that online shared decisions for managing a non-critical chronic illness are feasible and usable through the iheart web intervention.
Nilsson, Carina; Skär, Lisa; Söderberg, Siv
The aim of this case study was to describe two District Nurses' (DN) experiences of using information and communication technology (ICT) to communicate with chronically ill people in their homes. An electronic messaging program via computers and mobile phones with an Internet connection was used, enabling DNs and the ill people to exchange messages to and from anywhere. The program comprised different virtual rooms, and communication was via text messages. The DNs in this study used the program two to four times each week from November 2003 to March 2004. Semi-structured interviews were performed before, during and after the implementation of the new technology and were analysed using thematic content analysis. The results showed that the DNs felt that the technology increased accessibility to nursing care through a more direct communication with the ill person meaning that a more trusting relationship could be created. The DNs also experienced that the use of ICT saved working time. This study indicates that the use of ICT for communication allowed the DN to better support a chronically ill person at home leading to improved home nursing care. This method of communication cannot replace physical presence, but can be seen as a complement to nursing care at home.
Hatzmann, Janneke; Maurice-Stam, Heleen; Heymans, Hugo SA; Grootenhuis, Martha A
Background Parents of chronically ill children are at risk for a lower Health Related Quality of Life (HRQoL). Insight in the dynamics of factors influencing parental HRQoL is necessary for development of interventions. Aim of the present study was to explore the influence of demographic and disease related factors on parental HRQoL, mediated by employment, income, leisure time, holiday and emotional support in a comprehensive model. Methods In a cross-sectional design, 543 parents of chronically ill children completed questionnaires. A conceptual model of parental HRQoL was developed. Structural equation modeling was performed to explore the relations in the conceptual model, and to test if the model fitted the data. Results The model fitted the data closely (CHISQ(14) = 11.37, p = 0.66; RMSEA = 0.0, 90%CI [0.00;0.034]. The effect of socio-demographic and medical data on HRQoL was mediated by days on holiday (MCS: β = .21) and emotional support (PCS: β = .14; MCS: β = .28). Also, female gender (β = -.10), age (β = .10), being chronically ill as a parent (β = -.34), and care dependency of the child (β = -.14; β = -.15) were directly related to parental HRQoL. Conclusion The final model was slightly different from the conceptual model. Main factors explaining parental HRQoL seemed to be emotional support, care dependency, days on holiday and being chronically ill as a parent. Holiday and emotional support mediated the effect of demographic and disease-related factors on HRQoL. Hours of employment, leisure time and household income did not mediate between background characteristics and HRQoL, contrasting the hypotheses. PMID:19638197
Hedman, Maria; Pöder, Ulrika; Mamhidir, Anna-Greta; Nilsson, Annika; Kristofferzon, Marja-Leena; Häggström, Elisabeth
There is a lack of knowledge about how older people living with chronic illness describe the meaning of autonomy and participation, indicating a risk for reduced autonomy and participation in their everyday life. The purpose of this study was to describe the meaning of autonomy and participation among older people living with chronic illness in accordance with their lived experience. The design was descriptive with a phenomenological approach guided by Giorgi's descriptive phenomenological psychological method. Purposive sampling was used, and 16 older people living with chronic illness who lived in an ordinary home participated in individual interviews. The findings showed that the meaning of autonomy and participation among the older people emerged when it was challenged and evoked emotional considerations of the lived experience of having a chronic illness. It involved living a life apart, yet still being someone who is able, trustworthy and given responsibility--still being seen and acknowledged. The meaning of autonomy and participation was derived through life memories and used by the older people in everyday life for adjustment or adaption to the present life and the future. Our conclusion is that autonomy and participation were considered in relation to older people's life memories in the past, in their present situation and also their future wishes. Ability or disability is of less importance than the meaning of everyday life among older people. We suggest using fewer labels for limitations in everyday life when caring for older people and more use of the phrase 'ability to act' in different ways, based on older people's descriptions of the meaning of autonomy and participation.
Wu, Shu-Fang Vivienne
This study intended to test the reliability and validity of two simple psychological screening scales, the World Health Organization Well-being Index (WHO-5) and the 9-item Patient Health Questionnaire (PHQ-9), in patients with chronic illness in Taiwan and to understand the psychological well-being of patients with chronic illness (e.g., metabolic syndrome) in Taiwan and the incidences of psychological problems that follow. The research design of this study was a descriptive cross-sectional study. The sample comprised 310 patients with metabolic syndrome (MS), aged 20 years or more, from the outpatient clinic of a municipal hospital in Taiwan. This study used questionnaires to collect basic information, including physiological indices, WHO-5 and PHQ-9 that were used. "Hospital Anxiety and Depression scale (HADS)," and "World Health Organization Quality of Life-Short-form Version for Taiwan (WHOQOL)". Results are as follows: (1) compared to PHQ-9, the reliability and validity of WHO-5 are better for screening the psychological well-being of patients with chronic illness. (2) The features of WHO-5 are high sensitivity, briefness, and ease-of-use. The incidence of depression in patients with metabolic syndrome was approximately 1.0-6.5%, which is significantly lower than that of western countries.
Molina, Yamile; Choi, Seung W.; Cella, David; Rao, Deepa
Purpose Although the impact of stigma has been highlighted for epileptic populations, the experiences of people living with other neurological conditions have been less studied. In order to promote research on stigma among people with neurological conditions, we sought to develop and psychometrically validate an 8-item questionnaire measuring internalised and enacted stigma experienced by people with epilepsy, multiple sclerosis (MS), Parkinson’s disease (PD), stroke, and amyotrophic lateral sclerosis (ALS). Methods We used Item Response Theory (IRT) methodologies to select items and field-tested our items with 587 participants from 8 academic medical centres across the United States. Results We conducted Exploratory and Confirmatory Factor Analysis as well as examined scale the reliability and validity. In addition, we conducted an analysis of variance (ANOVA) test to examine mean total score differences across the 5 neurological conditions. Data from people across conditions revealed that the shortened instrument conformed to an essentially unidimensional model of multi-faceted stigma as a 1-factor questionnaire with correlated residuals on a pair of items that distinctly measured internalised stigma. Conclusions Preliminary evidence suggests that the Stigma Scale for Chronic Illness 8-item version (SSCI-8) fits a unidimensional model, which assesses enacted and internalised stigma, and has adequate internal consistency/reliability and validity in relation to psychological distress and patient performance. Our results suggest fairly low stigma for neurological populations. In addition, our results suggest that stigma may be more severe for patients with ALS relative to those with MS and PD. Our results suggest that the scale could be used practically in the clinic setting to examine stigma without the patient burden associated with lengthier scales. PMID:22639392
Lyons, Kathleen Doyle; Bakitas, Marie; Hegel, Mark T; Hanscom, Brett; Hull, Jay; Ahles, Tim A
The Functional Assessment of Chronic Illness Therapy (FACIT) system provides a general, multidimensional measure of health-related quality of life (FACT-G) that can be augmented with disease or symptom-specific subscales. The 19-item palliative care subscale of the FACIT system has undergone little psychometric evaluation to date. The aim of this paper is to report the internal consistency, factor structure, and construct validity of the instrument using the palliative care subscale (FACIT-Pal). Two hundred fifty-six persons with advanced cancer in a randomized trial testing a palliative care psychoeducational intervention completed the 46-item FACIT-Pal at baseline. Internal consistency was greater than 0.74 for all subscales and the total score. Seventeen of the 19 palliative care subscale items loaded onto the four-factor solution of the established core measure (FACT-G). As hypothesized, total scores were correlated with measures of symptom intensity (r=-0.73, P<0.001) and depression (r=-0.75, P<0.001). The FACIT-Pal was able to discriminate between participants who died within three months of completing the baseline and participants who lived for at least one year after completing the baseline assessment (t=-4.05, P<0.001). The functional well-being subscale discriminated between participants who had a Karnofsky performance score of 70 and below and participants with a Karnofsky performance score of 80 and above (t=3.40, P<0.001). The findings support the internal consistency reliability and validity of the FACIT-Pal as a measure of health-related quality of life for persons with advanced cancer.
Many technology developments hold the potential to improve the quality of life of people and make life easier and more comfortable. New technologies have been well accepted by most people. Information sharing in particular is a major catalyst of change in our current technology-based society. Technology has widely innovated life and drastically changed lifestyles. The Technology Acceptance Model (TAM), a model developed to address the rapid advances in computer technology, is used to explain and predict user acceptance of new information technology. In the past, businesses have used the TAM as an assessment tool to predict user acceptance when introducing new technology products. They have also used external factors in the model to influence user perceptions and beliefs and to ensure the successful spread of new technologies. Informatization plays a critical role in healthcare services. Due to the rapid aging of populations and upward trends in the incidence of chronic illness, requirements for long-term care have increased in both quality and quantity. Therefore, there has been an increased emphasis on integrating healthcare and information technology. However, most elderly are significantly less adept at technology use than the general population. Therefore, we reexamined the effect that the essential concepts in a TAM exerted on technology acceptance. In the present study, the technology acceptance experience with regard to telehealth of the elderly was used as an example to explain how the revised technology acceptance model (TAM 2) may be effectively applied to enhance the understanding of technology care among nurses. The results may serve as a reference for future research on healthcare-technology use in long-term care or in elderly populations.
De Palma, Rodney; Sotto, Imelda; Wood, Elizabeth G.; Khan, Noorafza Q.; Butler, Jane; Johnston, Atholl; Rothman, Martin T.
Abstract Aims Poor prognosis in chronic heart failure (HF) is linked to endothelial dysfunction for which there is no specific treatment currently available. Previous studies have shown reproducible improvements in endothelial function with cocoa flavanols, but the clinical benefit of this effect in chronic HF has yet to be determined. Therefore, the aim of this study was to assess the potential therapeutic value of a high dose of cocoa flavanols in patients with chronic HF, by using reductions in N‐terminal pro‐B‐type natriuretic peptide (NT‐proBNP) as an index of improved cardiac function. Methods and results Thirty‐two patients with chronic HF, stable on guideline‐directed medical therapy, were randomized to consume 50 g/day of high‐flavanol dark chocolate (HFDC; 1064 mg of flavanols/day) or low‐flavanol dark chocolate (LFDC; 88 mg of flavanols/day) for 4 weeks and then crossed over to consume the alternative dark chocolate for a further 4 weeks. Twenty‐four patients completed the study. After 4 weeks of HFDC, NT‐proBNP (mean decrease % ± standard deviation) was significantly reduced compared with baseline (−44 ± 69%), LFDC (−33 ± 72%), and follow‐up (−41 ± 77%) values. HFDC also reduced diastolic blood pressure compared with values after LFDC (−6.7 ± 10.1 mmHg). Conclusions Reductions in blood pressure and NT‐proBNP after HFDC indicate decreased vascular resistance resulting in reduced left ventricular afterload. These effects warrant further investigation in patients with chronic HF. PMID:27588209
Kotchick, Beth A.; Summers, Peter; Forehand, Rex; Steele, Ric G.
Examines the relation between social support and psychosocial adjustment in children of men with hemophilia. Results, based on 53 families, indicate that the impact of illness, not the severity of illness itself, related to children's psychosocial adjustment. Main effects were observed for parental support on child- and parent-reported…
Aoun, Samar M; O'Connor, Moira; Breen, Lauren J; Deas, Kathleen; Skett, Kim
This project implemented and evaluated two models of care for terminally ill people living alone at home: installing personal alarms (PA) and providing extra care aide (CA) support. The primary aim was to assess the feasibility of using a randomised controlled trial (RCT) approach with this group. A secondary aim was to assess the potential impact of the models of care on the participants' quality of life, symptom distress, anxiety and depression, and perceived benefits and barriers to their use. The two models of care were piloted in collaboration with Silver Chain Hospice Care Service (SCHCS) in Western Australia during 2009-2010. Using a pilot RCT design, equal numbers of participants were randomised to receive extra CA time, PAs or standard care. Attrition reduced the sample size from 20 in each group to 12, 14 and 17 respectively. The intervention period was between 6 and 12 weeks depending on prognosis. The participants were functionally and psychologically well and the majority lived alone by choice. There were physical and psychological benefits associated with provision of the two models of care, particularly for the group supported by CAs in terms of improved sleeping and appetite. However, the impact was mostly not statistically significant due to small sample sizes. The study has highlighted two methodological challenges: the wide variation in the degree of living alone at home leading to complex inclusion criteria, and an RCT approach with attrition differing across groups and patients not wanting to be included in the assigned group. The RCT approach is not considered appropriate for the 'home alone' palliative care population that would have been better supported by providing each participant with a personalised model of care according to needs. However, the outcomes of the project have prompted changes in SCHCS practice when providing care to these patients.
Holland, Paula; Nylén, Lotta; Thielen, Karsten; van der Wel, Kjetil A; Chen, Wen-Hao; Barr, Ben; Burström, Bo; Diderichsen, Finn; Andersen, Per Kragh; Dahl, Espen; Uppal, Sharanjit; Clayton, Stephen; Whitehead, Margaret
The authors investigate three hypotheses on the influence of labor market deregulation, decommodification, and investment in active labor market policies on the employment of chronically ill and disabled people. The study explores the interaction between employment, chronic illness, and educational level for men and women in Canada, Denmark, Norway, Sweden, and the United Kingdom, countries with advanced social welfare systems and universal health care but with varying types of active and passive labor market policies. People with chronic illness were found to fare better in employment terms in the Nordic countries than in Canada or the United Kingdom. Their employment chances also varied by educational level and country. The employment impact of having both chronic illness and low education was not just additive but synergistic. This amplification was strongest for British men and women, Norwegian men, and Danish women. Hypotheses on the disincentive effects of tighter employment regulation or more generous welfare benefits were not supported. The hypothesis that greater investments in active labor market policies may improve the employment of chronically ill people was partially supported. Attention must be paid to the differential impact of macro-level policies on the labor market participation of chronically ill and disabled people with low education, a group facing multiple barriers to gaining employment.
Bonsaksen, Tore; Haukeland-Parker, Stacey; Lerdal, Anners; Fagermoen, May Solveig
Chronic obstructive pulmonary disease (COPD) is a progressive respiratory disease with an increasing prevalence worldwide. Its potential consequences, including reduced function and reduced social participation, are likely to be associated with decreased health-related quality of life (HRQoL). However, illness perceptions and self-efficacy beliefs may also play a part in determining HRQoL in persons with COPD. The aim of this study was to explore the relationships between illness perceptions, self-efficacy, and HRQoL in a sample of persons with COPD in a longitudinal perspective. The context of the study was a patient education course from which the participants were recruited. Data concerning sociodemographic variables, social support, physical activity, illness perceptions, general self-efficacy, and HRQoL were collected before the course started and 1 year after completion. Linear regression was used in the analyses. The results showed that less consequences and less symptoms (identity) were associated with higher physical HRQoL (PCS) at baseline and at 1-year follow-up. Less emotional response was similarly associated with higher mental HRQoL (MCS) at both time points. Lower self-efficacy showed a borderline significant association with higher PCS at baseline, but was unrelated to MCS at both time points. Self-efficacy showed no influence on the associations between illness perceptions and HRQoL. In conclusion, the study showed that specific illness perceptions had a stable ability to predict HRQoL in persons with COPD, whereas self-efficacy did not. The associations between illness perceptions and HRQoL were not mediated by self-efficacy.
Frenz, Patricia; Grabenhenrich, Linus; Keil, Thomas; Tinnemann, Peter
Abstract Objective To assess universal health coverage for adults aged 50 years or older with chronic illness in China, Ghana, India, Mexico, the Russian Federation and South Africa. Methods We obtained data on 16 631 participants aged 50 years or older who had at least one diagnosed chronic condition from the World Health Organization Study on Global Ageing and Adult Health. Access to basic chronic care and financial hardship were assessed and the influence of health insurance and rural or urban residence was determined by logistic regression analysis. Findings The weighted proportion of participants with access to basic chronic care ranged from 20.6% in Mexico to 47.6% in South Africa. Access rates were unequally distributed and disadvantaged poor people, except in South Africa where primary health care is free to all. Rural residence did not affect access. The proportion with catastrophic out-of-pocket expenditure for the last outpatient visit ranged from 14.5% in China to 54.8% in Ghana. Financial hardship was more common among the poor in most countries but affected all income groups. Health insurance generally increased access to care but gave insufficient protection against financial hardship. Conclusion No country provided access to basic chronic care for more than half of the participants with chronic illness. The poor were less likely to receive care and more likely to face financial hardship in most countries. However, inequity of access was not fully determined by the level of economic development or insurance coverage. Future health reforms should aim to improve service quality and increase democratic oversight of health care. PMID:27034521
Shoemaker, Ritchie C; House, Dennis E
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
Background This paper presents the evaluation of “Moving On”, a generic self-management program for people with a chronic illness developed by Arthritis NSW. The program aims to help participants identify their need for behaviour change and acquire the knowledge and skills to implement changes that promote their health and quality of life. Method A prospective pragmatic randomised controlled trial involving two group programs in community settings: the intervention program (Moving On) and a control program (light physical activity). Participants were recruited by primary health care providers across the north-west region of metropolitan Sydney, Australia between June 2009 and October 2010. Patient outcomes were self-reported via pre- and post-program surveys completed at the time of enrolment and sixteen weeks after program commencement. Primary outcomes were change in self-efficacy (Self-efficacy for Managing Chronic Disease 6-Item Scale), self-management knowledge and behaviour and perceived health status (Self-Rated Health Scale and the Health Distress Scale). Results A total of 388 patient referrals were received, of whom 250 (64.4%) enrolled in the study. Three patients withdrew prior to allocation. 25 block randomisations were performed by a statistician external to the research team: 123 patients were allocated to the intervention program and 124 were allocated to the control program. 97 (78.9%) of the intervention participants commenced their program. The overall attrition rate of 40.5% included withdrawals from the study and both programs. 24.4% of participants withdrew from the intervention program but not the study and 22.6% withdrew from the control program but not the study. A total of 62 patients completed the intervention program and follow-up evaluation survey and 77 patients completed the control program and follow-up evaluation survey. At 16 weeks follow-up there was no significant difference between intervention and control groups in self
... call, or go the website of the National Suicide Prevention Lifeline (1-800-273-8255). Trained crisis ... improving the quality of life for people with chronic illnesses. Learn more about clinical trials on the ...
Kimura, Joe; DaSilva, Karen; Marshall, Richard
The increasing prevalence of chronic illnesses in the United States requires a fundamental redesign of the primary care delivery system's structure and processes in order to meet the changing needs and expectations of patients. Population management, systems-based practice, and planned chronic illness care are 3 potential processes that can be integrated into primary care and are compatible with the Chronic Care Model. In 2003, Harvard Vanguard Medical Associates, a multispecialty ambulatory physician group practice based in Boston, Massachusetts, began implementing all 3 processes across its primary care practices. From 2004 to 2006, the overall diabetes composite quality measures improved from 51% to 58% for screening (HgA1c x 2, low-density lipoprotein, blood pressure in 12 months) and from 13% to 17% for intermediate outcomes (HgA1c
Parry, Ruth; Land, Victoria; Faull, Christina; Feathers, Luke; Seymour, Jane
Objective To examine how palliative medicine doctors engage patients in end-of-life (hereon, EoL) talk. To examine whether the practice of “eliciting and responding to cues”, which has been widely advocated in the EoL care literature, promotes EoL talk. Design Conversation analysis of video- and audio-recorded consultations. Participants Unselected terminally ill patients and their companions in consultation with experienced palliative medicine doctors. Setting Outpatient clinic, day therapy clinic, and inpatient unit of a single English hospice. Results Doctors most commonly promoted EoL talk through open elaboration solicitations; these created opportunities for patients to introduce–then later further articulate–EoL considerations in such a way that doctors did not overtly ask about EoL matters. Importantly, the wording of elaboration solicitations avoided assuming that patients had EoL concerns. If a patient responded to open elaboration solicitations without introducing EoL considerations, doctors sometimes pursued EoL talk by switching to a less participatory and more presumptive type of solicitation, which suggested the patient might have EoL concerns. These more overt solicitations were used only later in consultations, which indicates that doctors give precedence to patients volunteering EoL considerations, and offer them opportunities to take the lead in initiating EoL talk. There is evidence that doctors treat elaboration of patients’ talk as a resource for engaging them in EoL conversations. However, there are limitations associated with labelling that talk as “cues” as is common in EoL communication contexts. We examine these limitations and propose “possible EoL considerations” as a descriptively more accurate term. Conclusions Through communicating–via open elaboration solicitations–in ways that create opportunities for patients to volunteer EoL considerations, doctors navigate a core dilemma in promoting EoL talk: giving
Background 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. Methods 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). Results 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. Conclusions This study shows that from the perspective of multimorbid patients receiving care in German
Mercer, Kathryn; Giangregorio, Lora; Schneider, Eric; Chilana, Parmit; Li, Melissa
Background Physical inactivity and sedentary behavior increase the risk of chronic illness and death. The newest generation of “wearable” activity trackers offers potential as a multifaceted intervention to help people become more active. Objective To examine the usability and usefulness of wearable activity trackers for older adults living with chronic illness. Methods We recruited a purposive sample of 32 participants over the age of 50, who had been previously diagnosed with a chronic illness, including vascular disease, diabetes, arthritis, and osteoporosis. Participants were between 52 and 84 years of age (mean 64); among the study participants, 23 (72%) were women and the mean body mass index was 31 kg/m2. Participants tested 5 trackers, including a simple pedometer (Sportline or Mio) followed by 4 wearable activity trackers (Fitbit Zip, Misfit Shine, Jawbone Up 24, and Withings Pulse) in random order. Selected devices represented the range of wearable products and features available on the Canadian market in 2014. Participants wore each device for at least 3 days and evaluated it using a questionnaire developed from the Technology Acceptance Model. We used focus groups to explore participant experiences and a thematic analysis approach to data collection and analysis. Results Our study resulted in 4 themes: (1) adoption within a comfort zone; (2) self-awareness and goal setting; (3) purposes of data tracking; and (4) future of wearable activity trackers as health care devices. Prior to enrolling, few participants were aware of wearable activity trackers. Most also had been asked by a physician to exercise more and cited this as a motivation for testing the devices. None of the participants planned to purchase the simple pedometer after the study, citing poor accuracy and data loss, whereas 73% (N=32) planned to purchase a wearable activity tracker. Preferences varied but 50% felt they would buy a Fitbit and 42% felt they would buy a Misfit, Jawbone, or
Hartzler, Andrea L; Venkatakrishnan, Anusha; Mohan, Shiwali; Silva, Michael; Lozano, Paula; Ralston, James D; Ludman, Evette; Rosenberg, Dori; Newton, Katherine M; Nelson, Lester; Pirolli, Peter
With increased incidence of chronic illnesses arising due to unhealthy lifestyle habits, it is increasingly important to leverage technology applications to promote and sustain health behavior change. We developed a smartphone-based application, NutriWalking (NW), which recommends personalized daily exercise goals and promotes healthy nutritional habits in small peer teams. Here, we demonstrate an early study of usability and acceptability of this app in patients with type 2 Diabetes Mellitus and Depression. Our goal was to evaluate the potential of NW as a self-management support tool. Findings point to design considerations for team-based self-management tools delivered via mHealth platforms.
Chan, Jessie S. M.; Ho, Rainbow T. H.; Chung, Ka-fai; Wang, Chong-wen; Yao, Tzy-jyun; Ng, Siu-man; Chan, Cecilia L. W.
Objectives. To evaluate the effectiveness of Baduanjin Qigong exercise on sleep, fatigue, anxiety, and depressive symptoms in chronic fatigue syndrome- (CFS-) like illness and to determine the dose-response relationship. Methods. One hundred fifty participants with CFS-like illness (mean age = 39.0, SD = 7.9) were randomly assigned to Qigong and waitlist. Sixteen 1.5-hour Qigong lessons were arranged over 9 consecutive weeks. Pittsburgh Sleep Quality Index (PSQI), Chalder Fatigue Scale (ChFS), and Hospital Anxiety and Depression Scale (HADS) were assessed at baseline, immediate posttreatment, and 3-month posttreatment. The amount of Qigong self-practice was assessed by self-report. Results. Repeated measures analyses of covariance showed a marginally nonsignificant (P = 0.064) group by time interaction in the PSQI total score, but it was significant for the “subjective sleep quality” and “sleep latency” items, favoring Qigong exercise. Improvement in “subjective sleep quality” was maintained at 3-month posttreatment. Significant group by time interaction was also detected for the ChFS and HADS anxiety and depression scores. The number of Qigong lessons attended and the amount of Qigong self-practice were significantly associated with sleep, fatigue, anxiety, and depressive symptom improvement. Conclusion. Baduanjin Qigong was an efficacious and acceptable treatment for sleep disturbance in CFS-like illness. This trial is registered with Hong Kong Clinical Trial Register: HKCTR-1380. PMID:25610473
Chan, Jessie S M; Ho, Rainbow T H; Chung, Ka-Fai; Wang, Chong-Wen; Yao, Tzy-Jyun; Ng, Siu-Man; Chan, Cecilia L W
Objectives. To evaluate the effectiveness of Baduanjin Qigong exercise on sleep, fatigue, anxiety, and depressive symptoms in chronic fatigue syndrome- (CFS-) like illness and to determine the dose-response relationship. Methods. One hundred fifty participants with CFS-like illness (mean age = 39.0, SD = 7.9) were randomly assigned to Qigong and waitlist. Sixteen 1.5-hour Qigong lessons were arranged over 9 consecutive weeks. Pittsburgh Sleep Quality Index (PSQI), Chalder Fatigue Scale (ChFS), and Hospital Anxiety and Depression Scale (HADS) were assessed at baseline, immediate posttreatment, and 3-month posttreatment. The amount of Qigong self-practice was assessed by self-report. Results. Repeated measures analyses of covariance showed a marginally nonsignificant (P = 0.064) group by time interaction in the PSQI total score, but it was significant for the "subjective sleep quality" and "sleep latency" items, favoring Qigong exercise. Improvement in "subjective sleep quality" was maintained at 3-month posttreatment. Significant group by time interaction was also detected for the ChFS and HADS anxiety and depression scores. The number of Qigong lessons attended and the amount of Qigong self-practice were significantly associated with sleep, fatigue, anxiety, and depressive symptom improvement. Conclusion. Baduanjin Qigong was an efficacious and acceptable treatment for sleep disturbance in CFS-like illness. This trial is registered with Hong Kong Clinical Trial Register: HKCTR-1380.
Chou, Pak Hei Benedito; Wister, Andrew V.
Drawing from the health belief model, cues to action have been theorized to influence health behaviours; however, few studies have examined these constructs explicitly. This study investigated the relationship between information cues to action and exercise self-care. It was hypothesized that reading about illness information, knowing about…
matter, hexachlorobenzene, volatile organic compounds, carbon monoxide, ash, heavy metals (such as arsenic), formaldehyde, hydrogen cyanide , nitrogen...designed to assess symp- toms, illnesses, exposures, and behaviors (such as tobacco and alco- hol use) among US military service members, including all...Base), re- portedly including asbestos, solvents, unexploded ordinance, hydro- gen cyanide , batteries, tires, plastics, feces, and medical wastes
Arze Aimaretti, L; Arze, S
Renal transplantation is the best therapeutic option for end-stage chronic renal disease. Assuming that it is more advisable if performed early, we aimed to show the clinical, social, and economic advantages in 70% of our patients who were dialyzed only for a short period. For this purpose, we retrospectively collected data over 28 years in 142 kidney transplants performed in patients with <6 weeks on dialysis. 66% of our patients were 30-60 years old; 98% of the patients had living donors. At transplantation, 64% of our patients had no public support; however, 64% of them returned to work and got health insurance 2 months later. Full rehabilitation was achieved in all cases, including integration to the family, return to full-time work, school and university, sports, and reproduction. Immunosuppression consisted of 3 drugs, including steroids, cyclosporine, and azathioprine or mycophenolate. The cost in the 1st year, including patient and donor evaluation, surgery, immunosuppression, and follow-up, was $13,300 USD versus $22,320 for hemodialysis. We conclude that preemptive renal transplantation with <6 weeks on dialysis is the best therapeutic option for end-stage renal failure, especially in developing countries such as Bolivia, where until last year, full public support for renal replacement therapy was unavailable.
Chan, Raymond C. K.; Di, Xin; McAlonan, Grainne M.; Gong, Qi-yong
Objective: The present study reviewed voxel-based morphometry (VBM) studies on high-risk individuals with schizophrenia, patients experiencing their first-episode schizophrenia (FES), and those with chronic schizophrenia. We predicted that gray matter abnormalities would show progressive changes, with most extensive abnormalities in the chronic group relative to FES and least in the high-risk group. Method: Forty-one VBM studies were reviewed. Eight high-risk studies, 14 FES studies, and 19 chronic studies were analyzed using anatomical likelihood estimation meta-analysis. Results: Less gray matter in the high-risk group relative to controls was observed in anterior cingulate regions, left amygdala, and right insula. Lower gray matter volumes in FES compared with controls were also found in the anterior cingulate and right insula but not the amygdala. Lower gray matter volumes in the chronic group were most extensive, incorporating similar regions to those found in FES and high-risk groups but extending to superior temporal gyri, thalamus, posterior cingulate, and parahippocampal gryus. Subtraction analysis revealed less frontotemporal, striatal, and cerebellar gray matter in FES than the high-risk group; the high-risk group had less gray matter in left subcallosal gyrus, left amygdala, and left inferior frontal gyrus compared with FES. Subtraction analysis confirmed lower gray matter volumes through ventral-dorsal anterior cingulate, right insula, left amygdala and thalamus in chronic schizophrenia relative to FES. Conclusions: Frontotemporal brain structural abnormalities are evident in nonpsychotic individuals at high risk of developing schizophrenia. The present meta-analysis indicates that these gray matter abnormalities become more extensive through first-episode and chronic illness. Thus, schizophrenia appears to be a progressive cortico-striato-thalamic loop disorder. PMID:19633214
Davies, P J
Throughout his life Mozart suffered frequent attacks of tonsillitis. In 1784 he developed post-streptococcal Schönlein-Henoch syndrome which caused chronic glomerular nephritis and chronic renal failure. His fatal illness was due to Schönlein-Henoch purpura, with death from cerebral haemorrhage and bronchopneumonia. Venesection(s) may have contributed to his death. PMID:6352940
Bonsaksen, Tore; Lerdal, Anners; Småstuen, Milada Cvancarova; Fagermoen, May Solveig
Background Chronic illness is a risk factor for low self-esteem, and the research literature needs to include more studies of self-esteem and its development in chronic illness groups using longitudinal and comparative designs. The aim of this study was to explore the trajectories of self-esteem and of positive and negative affect in persons with morbid obesity and in persons with chronic obstructive pulmonary disease (COPD). Methods Patient education course attendants in Norway having morbid obesity (n=139) or COPD (n=97) participated in the study. Data concerning self-esteem, positive and negative affect, and sociodemographic background were collected at the start and at the end of the patient education, with subsequent follow-ups at 3, 6, and 12 months. Data were analyzed using linear mixed models for repeated measures. Results Taking all measurements into account, our data revealed a statistically significant increase in self-esteem for participants with morbid obesity but not for those with COPD. There were no significant differences in levels of negative and positive affect between the two groups, and the time-trajectories were also similar. However, participants in both groups achieved lower levels of negative affect for all the successive measurement points. Conclusion An increase in self-esteem during the first year after the patient education course was observed for persons with morbid obesity, but not for persons with COPD. Initial higher levels of self-esteem in the participants with COPD may indicate that they are less troubled with low self-esteem than people with morbid obesity are. The pattern of reduced negative affect for both groups during follow-up is promising. PMID:27574438
Objective We assessed the feasibility and acceptability to patients of a telephone-supported self-care intervention for depression among adults aged 40 years or over with one of six targeted chronic physical illnesses and comorbid depressive symptoms in family practice settings. Methods An open, uncontrolled trial (feasibility study) was conducted among patients treated in Montreal family practices. Eligible patients were aged 40 years or over, had one or more of the targeted chronic physical illnesses for at least 6 months (arthritis, hypertension, diabetes, heart disease, asthma and chronic obstructive pulmonary disease) and were evaluated as having at least mild depressive symptoms (a score of ≥ 5 on the 9-item Patient Health Questionnaire, PHQ-9). Participants received a package of six self-care tools (information booklet, video, Internet programme, action plan, workbook and mood-monitoring tool) with telephone support by a lay coach for up to 6 months. Results In total, 63 eligible patients provided written consent and completed the baseline interview; 57 (90%) and 55 (87%) patients completed 2-month and 6-month follow-up interviews, respectively. The mean number of telephone calls made by coaches to participants was 10.5 (SD 4.0), and the average length of these calls was 10.6 minutes. At the 6-month follow-up, 83.6% of the participants reported that one or more of the tools were helpful. Clinically significant improvements were seen in depressive symptoms (as assessed by the PHQ-9) at 6 months, with an effect size of 0.88 (95% CI, 0.55, 1.14). Conclusion A telephone-supported self-care intervention for depression was feasible, was acceptable to patients, and was associated with a significant 6-month improvement in depressive symptoms. A randomised trial of this intervention is justified. PMID:24294301
Alashkar, Ferras; Vance, Colin; Herich-Terhürne, Dörte; Preising, Nicole; Dührsen, Ulrich; Röth, Alexander
Eculizumab is indicated for the therapy of patients with symptomatic paroxysmal nocturnal hemoglobinuria (PNH). Due to inhibition of terminal complement cascade, patients on eculizumab are susceptible to Neisseria meningitidis infections. The two mainstays to reduce the risk of infection are vaccination and antibiotic prophylaxis. In this retrospective study, serologic response was analyzed after vaccination with a meningococcal vaccine in 23 PNH patients (median age 36 years; range 25 - 88 years; 15 males, 8 females) by measuring serum bactericidal assay (SBA) using rabbit complement (rSBA) titers against meningococcal serogroups A, C, W, and Y. Serologic protection was defined by an rSBA titer ≥1:8. Forty-three percent (10/23) were vaccinated more than once due to chronic eculizumab treatment. Overall serologic response for the meningococcal serogroups was A: 78% (18/23), C: 87% (20/23), W: 48% (11/23), and Y: 70% (16/23). No meningococcal infections have been observed. As immunological response to vaccines varies, the use of serologic response analyses is warranted. Re-vaccination with a tetravalent conjugate vaccine under eculizumab therapy every 3 years is essential or should be based on response rates. If meningococcal infection is suspected, standby therapy with ciprofloxacin and immediate medical evaluation are recommended. The novel vaccines covering serogroup B may even further reduce the risk for infection.
Hughes-Scalise, Abby; Connell, Arin
Biopsychosocial conceptualizations of eating disorders (EDs) suggest the combination of an individual's emotional vulnerability and invalidating environment increases the likelihood of developing pervasive emotion dysregulation, and subsequent use of ED behaviors to regulate emotion (Haynos & Fruzetti, 2011; Safer, Telch, & Chen, 2009). The current study aimed to provide initial support for this model in adolescent EDs, through examining the interaction between an adolescent's emotional vulnerability, indexed by attentional biases for emotions, and an invalidating family environment. Specifically, we examined the ability of this interaction to discriminate youth with EDs from a comparison group of youth with chronic pain diagnoses, who were used to control for the presence of non-specific effects of having any illness. Fifty adolescent girls (25 with EDs and 25 with chronic pain) completed an emotional dot-probe task assessing attentional biases for emotional faces, and parents completed the Emotions as a Child Scale (Magai, 1996; Klimes-Dougan et al., 2007) to assess response to teen emotion. Results showed that teen angry attentional bias moderated the relationship between parental response to sadness and teen ED status: for teens with high attention bias towards angry faces, maladaptive parental response to sadness predicted increased odds of ED status versus chronic pain status.
Jiang, Bernard C.
Falls are unpredictable accidents, and the resulting injuries can be serious in the elderly, particularly those with chronic diseases. Regular exercise is recommended to prevent and treat hypertension and other chronic diseases by reducing clinical blood pressure. The “complexity index” (CI), based on multiscale entropy (MSE) algorithm, has been applied in recent studies to show a person's adaptability to intrinsic and external perturbations and widely used measure of postural sway or stability. The multivariate multiscale entropy (MMSE) was advanced algorithm used to calculate the complexity index (CI) values of the center of pressure (COP) data. In this study, we applied the MSE & MMSE to analyze gait function of 24 elderly, chronically ill patients (44% female; 56% male; mean age, 67.56 ± 10.70 years) with either cardiovascular disease, diabetes mellitus, or osteoporosis. After a 12-week training program, postural stability measurements showed significant improvements. Our results showed beneficial effects of resistance training, which can be used to improve postural stability in the elderly and indicated that MMSE algorithms to calculate CI of the COP data were superior to the multiscale entropy (MSE) algorithm to identify the sense of balance in the elderly. PMID:25295070
Agli, Océane; Bailly, Nathalie; Ferrand, Claude
The study aimed to develop a French version of the Functional Assessment of Chronic Illness Therapy-Spiritual Well-being short version (FACIT-Sp12), in order to provide a self-reported measure for French people in the field of gerontology. The study involving 63 nursing home residents was conducted to evaluate the construct validity, reliability, and convergence validity of the FACIT-Sp12. A confirmatory factor analysis corroborated a three-factor model (Meaning, Peace and Faith) with modifications for two items, also valid among people with cognitive impairment. Subscales showed good internal consistency and are correlated with quality of life and depression. In conclusion, the validated French version is an suitable instrument to study the maintenance and promotion of quality of life in the elderly.
Whittle, Henry J; Palar, Kartika; Hufstedler, Lee Lemus; Seligman, Hilary K; Frongillo, Edward A; Weiser, Sheri D
Food insecurity continues to be a major challenge in the United States, affecting 49 million individuals. Quantitative studies show that food insecurity has serious negative health impacts among individuals suffering from chronic illnesses, including people living with HIV/AIDS (PLHIV). Formulating effective interventions and policies to combat these health effects requires an in-depth understanding of the lived experience and structural drivers of food insecurity. Few studies, however, have elucidated these phenomena among people living with chronic illnesses in resource-rich settings, including in the United States. Here we sought to explore the experiences and structural determinants of food insecurity among a group of low-income PLHIV in the San Francisco Bay Area. Thirty-four semi-structured in-depth interviews were conducted with low-income PLHIV receiving food assistance from a local non-profit in San Francisco and Alameda County, California, between April and June 2014. Interview transcripts were coded and analysed according to content analysis methods following an inductive-deductive approach. The lived experience of food insecurity among participants included periods of insufficient quantity of food and resultant hunger, as well as long-term struggles with quality of food that led to concerns about the poor health effects of a cheap diet. Participants also reported procuring food using personally and socially unacceptable strategies, including long-term dependence on friends, family, and charity; stealing food; exchanging sex for food; and selling controlled substances. Food insecurity often arose from the need to pay high rents exacerbated by gentrification while receiving limited disability income--a situation resulting in large part from the convergence of long-standing urban policies amenable to gentrification and an outdated disability policy that constrains financial viability. The experiences of food insecurity described by participants in this
Beta-Bungarotoxin(beta-BT) was applied to chick embryos at 3-day intervals beginning on the 4th day of incubation to see the effect of chronically and massively applied beta-BT, and to investigate the hair cell-nerve relationship in the developing inner ear by electron microscopy. On the 10th day of incubation, nerve terminals had achieved contact with differentiating hair cells, but the acoustico-vestibular ganglion cells of treated animals were decreased in number to one-third of those of the control. By the 14th day, most of the ganglion cells degenerated and disappeared, and only a few nerve terminals were seen in the neuroepithelium. At this time, most of the hair cells lacked synaptic contacts with nerve terminals; but their presynaptic specialization remained intact and they showed evidence of continuing differentiation. On the 17th day, the acoustico-vestibular ganglion cells were completely absent. All the hair cells were devoid of afferent and efferent innervation but were fully differentiated on the 21st day. Beta-BT was found to have a similar destructive effect on cultured spinal ganglion cells. The present study shows that beta-BT kills acoustico-vestibular and spinal nerve cells when applied chronically and massively during development. Furthermore, the differentiation of hair cells proceeds normally, and their presynaptic specializations are maintained when nerve terminals are absent during later developmental stages. PMID:856835
Beich, Jeff; Scanlon, Dennis P; Ulbrecht, Jan; Ford, Eric W; Ibrahim, Ibrahim A
To date, pay-for-performance programs targeting the care of persons with chronic conditions have primarily been directed at physicians and provide an alternative to health plan-sponsored chronic disease management (DM) programs. Both approaches require similar infrastructure, and each has its own advantages and disadvantages for program implementation. Pay-for-performance programs use incentives based on patient outcomes; however, an alternative system might incorporate measures of structure and process. Using a conceptual framework, the authors explore the variation in 50 diabetes DM programs using data from the 2002 National Business Coalition on Health's eValue8 Request for Information (RFI). The authors raise issues relevant to the assignment of accountability for patient outcomes to either health plans or physicians. They analyze the association between RFI scores measuring structures and processes, and HEDIS diabetes intermediate outcome measures. Finally, the strengths and weaknesses of using the RFI scores as an alternative metric for pay-for-performance programs are discussed.
Jovenes con Discapacidades y Enfermedades Cronicas: Una Guia Introductoria para Joyenes y Padres. Revisiones de CYDLINE (Youth with Disabilities and Chronic Illnesses: An Introductory Guide for Youth and Parents. CYDLINE Reviews). Parents. CYDLINE Reviews.
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,…
Osváth, P; Fornai, K; Pozderka, B; Veres, B
The authors performed galactose loading tests in children suffering from chronic diseases: recurrent bronchitis vomiting, diarrhoea, milk-intolerance, somatic and mental retardation, cramps. In 32 of the 92 examined cases galactose levels rose until pathological, pseudo- diabetic levels. Stillbirth, cataract, hyperbilirubinaemia, convulsions occurred among family members of 10 patients. Galactose-1-phosphat-uridyl-transferase levels were decreased only in 4 of the 17 patients examined. In the other cases some different pathway of galactose metabolism is suspected. Complete remission of symptoms was achieved with diet devoid of milk sugar (lactose) in 29 patients: one infant died and two others remained mentally retarded. According to the examinations presented minor deviations of galactose metabolism cause clinical symptoms more frequently in early life as it was supposed until now.
Muraco, Anna; Fredriksen-Goldsen, Karen
This study examines the relationships between friends; a caregiver who provides care to a care recipient, who is a lesbian, gay, or bisexual (LGB) adult over age 50 in need of assistance due to chronic physical or mental health conditions. Using a sample of 18 care pairs (n = 36), this work examines qualitative interview data. Findings from the study include: (a) both the care recipient and the caregiver receive benefits from the friendship; (b) caregiving alters and challenges the friendship; and (c) friends assume differential levels of commitment and responsibility in providing care. Studying this population of LGB adults expands our knowledge about the diversity of care arrangements and needs within a relational context.
Muszalik, Marta; Kołucka-Pluta, Małgorzata; Kędziora-Kornatowska, Kornelia; Robaczewska, Joanna
Objective Breast cancer is one of the most common cancers in women, particularly among older women. This illness along with its treatment has a great impact on a woman’s subjective opinion of her quality of life and functioning in everyday life. The aim of this research was to assess the quality of life in women undergoing radiotherapy for the treatment of breast cancer. Patients and methods The research was carried out in 120 patients with breast cancer undergoing radiotherapy in the Oncological Center in Bydgoszcz, Poland. Among the 120 examined patients, there were 30 women aged between 20–50 years and the remaining were over 50 years of age, including 42 women over the age of 60. Demographic and clinical data were collected and the Functional Assessment of Chronic Illness Therapy-Fatigue questionnaire (version 4) was used to assess health-related quality of life (HRQOL) of the patients. Statistical analyses were conducted using Statistica, version 10.0. Results Patients with breast cancer undergoing radiotherapy rated their quality of life with an average of 113.83 points. Older patients above 71 years of age also displayed significantly higher HRQOL (122.70 points). A lower level of fatigue was noticed among patients ≤50 years and ≥71 years of age. Education and marital status also had an important impact on HRQOL. Educated women with a good financial situation had a significantly higher HRQOL, compared to those with a lower education and in poor living conditions. Conclusion HRQOL and state of fatigue in breast cancer patients treated with radiotherapy depended upon their age. Both were high among women aged 71 years and above, while younger patients (51–70 years of age) had slightly lower values. Results suggest that sociodemographic factors influence the conditions of life of women treated with radiotherapy for breast cancer in a significant way. Overall, patients tolerated this type of treatment well. PMID:27799754
Pérez-Vico-Díaz de Rada, Lucía; González-Suárez, Miriam; Duarte-Clíments, Gonzalo; Brito-Brito, Pedro Ruymán
A case is presented of a 52 year-old male seen in a Primary Care nursing clinic for a type 2 diabetes mellitus metabolic control. The frequency of the visits increased due to perceived difficulties caused by changing the medical treatment. A focused interview was conducted under functional health patterns framework. The patient was unable to write or read, had not worked for the last 25 years, and expressed a lack of control over his self-care. An action plan was prepared, prioritizing Ineffective Health Maintenance, Powerlessness, and Impaired Social Interaction NANDA-I nursing diagnoses. The goals were set at improving knowledge and control over his disease and participating in leisure activities. To achieve these, the social health resources in the area were contacted, and agreed that the patient could attend activities that could improve his self-care and his quality of life. An improvement in his diabetes control was observed in the following evaluations, with an increase in his level of knowledge and self-care. The Primary Health care nurse should consider available community resources by using a comprehensive approach to chronic diseases for their therapeutic benefit and management, especially in those patients with adverse sociocultural conditions.
Azevedo, Luís Filipe; Costa-Pereira, Altamiro; Mendonça, Liliane; Dias, Cláudia Camila; Castro-Lopes, José M
In addition to its high frequency and relevant individual and social impact, chronic pain (CP) has been shown to be a major contributor to increased healthcare utilisation, reduced labour productivity, and consequently large direct and indirect costs. In the context of a larger nationwide study, we aimed to assess the total annual direct and indirect costs associated with CP in Portugal. A population-based study was conducted in a representative sample of the Portuguese adult population. The 5,094 participants were selected using random digit dialling and contacted by computer-assisted telephone interviews. Questionnaires included the brief pain inventory and pain disability index. Estimates were adequately weighted for the population. From all CP subjects identified, a subsample (n = 562) accepted to participate in this economic study. Mean total annualised costs per CP subject of €1,883.30 were observed, amounting to €4,611.69 million nationally, with 42.7% direct and 57.3% indirect costs, and corresponding to 2.71% of the Portuguese annual GDP in 2010. Only socio-demographic variables were significantly and independently associated with CP costs, and not CP severity, raising the possibility of existing inequalities in the distribution of healthcare in Portugal. The high economic impact of CP in Portugal was comprehensively demonstrated. Given the high indirect costs observed, restricting healthcare services is not a rational response to these high societal costs; instead improving the quality of CP prevention and management is recommended.
Al-Otaibi, Najlaa G.; Zeinelabdin, Maryam; Shalaby, Mohamed A.; Khathlan, Norah; Mashat, Ghadi D.; Zahrani, Amal A.; NoorSaeed, Sundus MW.; Shalabi, Nora M.; Alhasan, Khalid A.; Sharief, Sara N.; Albanna, Amr S.; Kari, Jameela A.
Objectives: To determine the 2-year outcome of acute kidney injury (AKI) following admission to pediatric critical care units (PICU). Methods: A retrospective cohort study was conducted between January 2012 and December 2013. We followed 131 children admitted to PICU, King Abdulaziz University Hospital, Jeddah, Kingdom of Saudi Arabia with a diagnosis of AKI, based on pRIFLE (pediatric risk, injury, failure, loss, and end-stage renal disease), for 2 years. During the study period, 46 children died and 38 of survivors completed the follow-up. Factors affecting long-term progression to chronic kidney disease were also evaluated. Results: The 2-year mortality was more than 40%. The main determinant of the 2-year mortality was the pediatric risk of mortality (PRISM) score, which increased the risk of mortality by 6% per each one score (adjusted odds ratio, 1.06: 95% confidence interval: 1.00-1.11). By the end of the 2 years, 33% of survivors had reduction in the glomerular filtration rate and proteinuria, and 73% were hypertensive. Patients with more severe renal impairment at admission, based on the pRIFLE criteria, had higher mortality rate. This association, however, was not independent since it was influenced by baseline disease severity (PRISM score). Conclusion: Large proportion of patients admitted to PICU with AKI either died during the first 2 months of follow-up or developed long-term complications. The severity of AKI, however, was not an independent risk factor for mortality. PMID:28133685