The role of self-help groups in chronic illness management: A qualitative study

2003 ◽  
Vol 9 (3) ◽  
pp. 68 ◽  
Author(s):  
Kay Coppa ◽  
Frances M Boyle

Self-help groups offer a unique form of support based on mutual understanding and the experiential knowledge of members. They constitute a potentially valuable resource for assisting people to manage chronic illness and its impacts. We conducted in-depth interviews with 15 members and the leaders of five chronic illness-related self-help groups in Newcastle, New South Wales. The focus was on small, voluntary groups with little or no external funding; agencies that are often overlooked in terms of their contribution to the health care system. Those interviewed readily identified benefits relating to quality of life, illness management, and interactions with health care professionals. Increased emotional and social support, access to an expanded information base, a better understanding of their illness, and a greater sense of confidence and control in relation to it seemed to enhance the capacity of members to engage in active self-management of their conditions. Along with such benefits, group leaders also highlighted some of the challenges faced by volunteers who run these agencies. Self-help groups are effective structures that can serve as an adjunct to clinical care and provide tangible benefits to their members. Further investigation and better recognition of these groups is warranted given their potential to assist those with chronic illness and to contribute to national policy objectives for chronic disease management such as those identified in the Sharing Health Care Initiative.

2019 ◽  
Vol 27 (2) ◽  
pp. 105-111 ◽  
Author(s):  
Corina Güthlin ◽  
Hans-Helge Bartsch ◽  
Stefanie Joos ◽  
Alfred Längler ◽  
Claudia Lampert ◽  
...  

Background: The German Cancer Aid set up a priority research programme with the intention to generate high-quality information based on evidence and to make this information easily accessible for health-care professionals and advisors, researchers, patients, and the general public. Summary: The Kompetenznetz Komplementärmedizin in der Onkologie (KOKON) received 2 funding periods within this programme. During the first funding period, KOKON assessed patients’ and health-care professionals’ informational needs, developed a consulting manual for physicians, developed an education programme for self-help groups, set up a knowledge database, and developed a pilot information website for patients. Funding period 2 continues with work that allows cancer patients and health-care professionals to make informed decisions about complementary and alternative medicine (CAM). For this aim, KOKON evaluates training programmes for physicians (oncology physicians, paediatric oncologists, and general practitioners) and for self-help groups. All training programmes integrate results from an analysis of the ethical, psychological, and medical challenges of CAM in the medical encounter, and the knowledge database is being extended with issues related to CAM for supportive and palliative care. Key Message: A Germany-wide collaborative research project to identify needs, provide information, foster communication, and support decision-making about CAM in oncology is being set up.


2013 ◽  
pp. 189-193
Author(s):  
Valentina Koscak ◽  
◽  
Andreja Starcevic ◽  
Tihana Harapin ◽  
Melita Mesar

PEDIATRICS ◽  
1993 ◽  
Vol 91 (5) ◽  
pp. ii-ii

In June 1992, 35 health care professionals, child and disability advocates, researchers, clinicians, and parents met at Wingspread Center in Racine, Wisconsin, for an invitational conference on Culture and Chronic Illness in Childhood. The meeting had as its goal the identification of the state of knowledge on the interface between culture, chronic illness, child development, and family functioning so as to lay the foundations for "culturally appropriate" health policy formulation, "culturally sensitive" services, and "culturally competent" clinicians. The purpose of this special supplement is to establish a national agenda for research, policy, service delivery, and training in addressing the needs of all children with chronic illnesses and disabilities that takes the family, ethnicity, socioeconomic status, and culture into full account. To meet this task, five papers were commissioned. The first, by Newacheck et al, addresses the changes in incidence and prevalence of chronic illness and disability among children and youth by ethnic group. The second paper, by McManus et al, focuses on the trends in health services organization, delivery, and financing as they vary among ethnic groups in the United States. What emerges is a rhetoric of cultural sensitivity not paralleled in the organization or financing of health services. Groce and Zola's paper addresses how cultural attitudes and beliefs are the foundations of our perceptions about health and illness. Those perceptions at times are predisposed to conflict with a health care professional who, coming from a different culture, may hold different norms and beliefs. Brookins grounds her discussion within the context of child development and argues that for a child of color or one whose ethnic heritage is other than mainstream, the key to developmental success is bicultural competence—the ability to walk in and between two worlds.


Neurology ◽  
2020 ◽  
Vol 94 (23) ◽  
pp. 1032-1037 ◽  
Author(s):  
Jacqueline A. French ◽  
Martin J. Brodie ◽  
Roberto Caraballo ◽  
Orrin Devinsky ◽  
Ding Ding ◽  
...  

ObjectivesTo provide information on the effect of the coronavirus disease of 2019 (COVID-19) pandemic on people with epilepsy and provide consensus recommendations on how to provide the best possible care for people with epilepsy while avoiding visits to urgent care facilities and hospitalizations during the novel coronavirus pandemic.MethodsThe authors developed consensus statements in 2 sections. The first was “How should we/clinicians modify our clinical care pathway for people with epilepsy during the COVID-19 pandemic?” The second was “What general advice should we give to people with epilepsy during this crisis? The authors individually scored statements on a scale of −10 (strongly disagree) to +10 (strongly agree). Five of 11 recommendations for physicians and 3/5 recommendations for individuals/families were rated by all the authors as 7 or above (strongly agree) on the first round of rating. Subsequently, a teleconference was held where statements for which there was a lack of strong consensus were revised.ResultsAfter revision, all consensus recommendations received a score of 7 or above. The recommendations focus on administration of as much care as possible at home to keep people with epilepsy out of health care facilities, where they are likely to encounter COVID-19 (including strategies for rescue therapy), as well as minimization of risk of seizure exacerbation through adherence, and through ensuring a regular supply of medication. We also provide helpful links to additional helpful information for people with epilepsy and health providers.ConclusionThese recommendations may help health care professionals provide optimal care to people with epilepsy during the coronavirus pandemic.


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