Tag: social support

Social support needs for equity in health and social care: a thematic analysis of experiences of people with chronic fatigue syndrome/myalgic encephalomyelitis

Abstract:

BACKGROUND: Needs-based resource allocation is fundamental to equitable care provision, which can meet the often-complex, fluctuating needs of people with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME). This has posed challenges both for those providing and those seeking support providers, in building shared understanding of the condition and of actions to address it. This qualitative study reports on needs for equity in health and social care expressed by adults living with CFS/ME.

METHODS: The participants were 35 adults with CFS/ME in England, purposively selected to provide variation in clinical presentations, social backgrounds and illness experiences. Accounts of experienced needs and needs-related encounters with health and social services were obtained through a focus group (n = 6) and semi-structured interviews (n = 35). These were transcribed and needs related topics identified through data-led thematic analysis.

FINDINGS: Participants emphasised needs for personalised, timely and sustained support to alleviate CFS/ME impacts and regain life control, in three thematic areas: (1) Illness symptoms, functional limitations and illness management; (2) practical support and social care; (3) financial support. Access of people with CFS/ME to support from health and social services was seen to be constrained by barriers stemming from social, cultural, organisational and professional norms and practices, further heightened for disadvantaged groups including some ethnic minorities. These reduced opportunities for their illness to be explained or associated functional limitations and social disadvantages to be addressed through social support. Participants sought more understanding of bio-psycho-social aspects of CFS/ME, of felt needs of people with CFS/ME and of human rights and disability rights, for providing person-centred, equitable care.

CONCLUSIONS: Changes in attitudes of health practitioners, policy makers and general public and more flexibly organised health and social care provision are needed to address equity issues in support needs expressed by people with CFS/ME, to be underpinned by research-based knowledge and communication, for public and professional education. Policy development should include shared decision-making and coordinated action across organizations working for people with CFS/ME, human rights and disadvantaged groups. Experiences of people with CFS/ME can usefully inform an understanding of equity in their health and social care.

 

Source: de Carvalho Leite JC1, de L Drachler M, Killett A, Kale S, Nacul L, McArthur M, Hong CS, O’Driscoll L, Pheby D, Campion P, Lacerda E, Poland F. Social support needs for equity in health and social care: a thematic analysis of experiences of people with chronic fatigue syndrome/myalgic encephalomyelitis. Int J Equity Health. 2011 Nov 2;10:46. doi: 10.1186/1475-9276-10-46. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3229491/ (Full article)

 

Provision of social support to individuals with chronic fatigue syndrome

Abstract:

The present study evaluated a buddy program designed to provide support for individuals with chronic fatigue syndrome (CFS). The intervention involved weekly visits by a student paraprofessional, who helped out with tasks that needed to be done in an effort to reduce some of the taxing demands and responsibilities that participants regularly encountered. This model of rehabilitation focused on avoiding overexertion in persons with CFS, aiming to avoid setbacks and relapses while increasing their tolerance for activity.

Participants with CFS were randomly assigned to either a 4-month buddy intervention or a control condition. Posttest results showed that individuals who received a student buddy intervention had significantly greater reductions in fatigue severity and increases in vitality than individuals in the control condition. There were no significant changes between groups for physical functioning and stress.

Buddy interventions that help patients with CFS reduce overexertion and possibly remain within their energy envelopes can be thought of as representing a different paradigm than nonpharmacologic interventions that focus only on increasing levels of activity through graded exercise.

Copyright 2009 Wiley Periodicals, Inc.

 

Source: Jason LA, Roesner N, Porter N, Parenti B, Mortensen J, Till L. Provision of social support to individuals with chronic fatigue syndrome. J Clin Psychol. 2010 Mar;66(3):249-58. doi: 10.1002/jclp.20648. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3693568/ (Full article)

 

Social support and chronic fatigue syndrome

Abstract:

The role of social support was examined in Chronic Fatigue Syndrome (CFS). Social support has been shown to affect illness outcome in medical disorders, likely due in part to communication between patient and support giver on illness-related concerns. Forty-one participants, 25 of whom had a primary support giver, completed the Beck Depression Inventory, the Perceived Stress Scale, the Profile of Mood States, and the Inventory of Socially Supportive Behaviors (ISSB); the primary support giver completed a modified version of the ISSB indicating the level of support he or she provided and a questionnaire assessing beliefs about CFS.

Results indicated that there were no differences among individuals with CFS with or without support on measures of mood and perceived stress. Individuals with CFS and their support givers agreed on the amount of support offered, and extent of support was independent of beliefs concerning etiology. Exploratory analyses revealed that verbal emotional-cognitive support generally was more predictive of mental health than was tangible, less communicative support. The lack of positive effect of social support is discussed in relation to the degree of support offered, and implications for future research are discussed.

 

Source: Kelly KS, Soderlund K, Albert C, McGarrahan AG. Social support and chronic fatigue syndrome. Health Commun. 1999;11(1):21-34. http://www.ncbi.nlm.nih.gov/pubmed/16370968

 

Death of a lifestyle: the effects of social support and healthcare support on the quality of life of persons with fibromyalgia and/or chronic fatigue syndrome

Abstract:

PURPOSE: The purpose of this study was to investigate how social support and healthcare support affect the quality of life of persons with fibromyalgia and chronic fatigue syndrome.

METHOD: A constant comparison method was used for the qualitative portion of the research and descriptive correlational methods were used for the quantitative portion.

CONCLUSION: This mixed design research study suggested that social support, unlike healthcare support, is related to Quality of Life (QOL). It was also evident that subjects suffering from CFS and/or FMS do not experience high levels of social support.

 

Source: Schoofs N, Bambini D, Ronning P, Bielak E, Woehl J. Death of a lifestyle: the effects of social support and healthcare support on the quality of life of persons with fibromyalgia and/or chronic fatigue syndrome. Orthop Nurs. 2004 Nov-Dec;23(6):364-74. http://www.ncbi.nlm.nih.gov/pubmed/15682879

 

Social support and the persistence of complaints in chronic fatigue syndrome

Abstract:

BACKGROUND: Several studies suggested that the surroundings of chronic fatigue syndrome (CFS) patients are of importance in the persistence of complaints. Contrary to what was expected, participation in support groups has not led to clinical improvement. The purpose of the present study was to describe social support in CFS patients as compared with other fatigued and non-fatigued groups. Further, changes in social support and the influence of social support on the course of CFS over a period of more than 1 year were studied in patients with and without treatment.

METHODS: Baseline data were assessed in 270 CFS patients, 150 disease-free breast cancer patients, 151 fatigued employees on sick-leave and 108 healthy subjects using the Social Support List and Significant Others Scale. CFS patients were followed in cognitive behaviour therapy (CBT), guided support groups and natural course at 8 and 14 months.

RESULTS: CFS patients and fatigued employees reported more negative interactions and insufficiency of supporting interactions than cancer patients and healthy controls. No differences in frequency of supporting interactions were found. Negative interactions decreased significantly after treatment with CBT, but did not change in support groups or natural course. In the natural course, higher fatigue severity at 8 months was predicted by more negative interactions at baseline.

CONCLUSIONS: In CFS patients and fatigued employees, social support is worse than in disease-free cancer patients and healthy controls. Lack of social support was identified as a new factor in the model of perpetuating factors of fatigue severity and functional impairment in CFS.

Copyright 2004 S. Karger AG, Basel

 

Source: Prins JB, Bos E, Huibers MJ, Servaes P, van der Werf SP, van der Meer JW, Bleijenberg G. Social support and the persistence of complaints in chronic fatigue syndrome. Psychother Psychosom. 2004 May-Jun;73(3):174-82. http://www.ncbi.nlm.nih.gov/pubmed/15031590

 

Couples’ perceptions of wives’ CFS symptoms, symptom change, and impact on the marital relationship

Abstract:

The purpose of this descriptive correlational study was to describe the differences in couples’ perceptions of wives’ Chronic Fatigue Syndrome (CFS) symptoms and to describe the relationship between changing symptoms and the marital relationship.

The convenience sample of 131 wives with CFS and their spouses reported symptom changes similarly. However, wives reported significantly higher problem levels for constitutional, fatigue, cognition, central nervous system (CNS), musculoskeletal, and allergy symptom domains and significantly less problem levels of mood disturbance domain than their husbands.

Husbands who reported more symptom changes also reported lower marital adjustment, less empathy and support from their wives, and more conflict within the relationship. Wives who reported more symptom changes reported lower marital adjustment, less empathy for their husbands, and more conflict within the relationship and had husbands who reported lower marital adjustment and less empathy and support by the wives.

 

Source: Goodwin SS. Couples’ perceptions of wives’ CFS symptoms, symptom change, and impact on the marital relationship. Issues Ment Health Nurs. 2000 Jun;21(4):347-63. http://www.ncbi.nlm.nih.gov/pubmed/11249354

 

A national assessment of the service, support, and housing preferences by persons with chronic fatigue syndrome. Toward a comprehensive rehabilitation program

Abstract:

Persons with Chronic Fatigue Syndrome (PWCs) completed and returned by mail a brief survey of open- and closed-ended items designed to assess their utilization and preferences for a variety of services. A total of 984 middle-aged adults diagnosed with Chronic Fatique Syndrome (CFS) from across North America returned the survey. During the past 12 months, many of these PWCs reported utilization of a primary care physician, gynecologist, CFS specialist, and self-help group to assist in their recovery from CFS. Most PWCs believed it was important to educate both health-care practitioners and the general public about CFS. In terms of their desire for specific recovery needs, factor analysis of responses indicated that these PWCs preferred self-help/social support services and general advocacy services in the treatment of their illness. The implications of these results for developing rehabilitation programs for PWCs are discussed.

 

Source: Jason LA, Ferrari JR, Taylor RR, Slavich SP, Stenzel CL. A national assessment of the service, support, and housing preferences by persons with chronic fatigue syndrome. Toward a comprehensive rehabilitation program. Eval Health Prof. 1996 Jun;19(2):194-207. http://www.ncbi.nlm.nih.gov/pubmed/10186910

 

Physical symptoms of chronic fatigue syndrome are exacerbated by the stress of Hurricane Andrew

Abstract:

This study examined the effects of Hurricane Andrew on physical symptoms and functional impairments in a sample of chronic fatigue syndrome(CFS) patients residing in South Florida. In the months after Hurricane Andrew (September 15-December 31, 1992), 49 CFS patients were assessed for psychosocial and physical functioning with questionnaires, interviews, and physical examinations.

This sample was made up of 25 CFS patients living in Dade county, a high impact area, and 24 patients in Broward and Palm Beach counties, areas less affected by the hurricane. Based on our model for stress-related effects on CFS, we tested the hypothesis that the patients who had the greatest exposure to this natural disaster would show the greatest exacerbation in CFS symptoms and related impairments in activities of daily living (illness burden). In support of this hypothesis, we found that the Dade county patients showed significant increases in physician-rated clinical relapses and exacerbations in frequency of several categories of self-reported CFS physical symptoms as compared to the Broward/Palm Beach county patients.

Illness burden, as measured on the Sickness Impact Profile, also showed a significant increase in the Dade county patients. Although extent of disruption due to the storm was a significant factor in predicting relapse, the patient’s posthurricane distress response was the single strongest predictor of the likelihood and severity of relapse and functional impairment.

Additionally, optimism and social support were significantly associated with lower illness burden after the hurricane, above and beyond storm-related disruption and distress responses. These findings provide information on the impact of environmental stressors and psychosocial factors in the exacerbation of CFS symptoms.

 

Source: Lutgendorf SK, Antoni MH, Ironson G, Fletcher MA, Penedo F, Baum A, Schneiderman N, Klimas N. Physical symptoms of chronic fatigue syndrome are exacerbated by the stress of Hurricane Andrew. Psychosom Med. 1995 Jul-Aug;57(4):310-23. http://www.ncbi.nlm.nih.gov/pubmed/7480560