Community-based Support Groups Research Articles

The impact of epilepsy on the quality of life of people with epilepsy in Zimbabwe: A pilot study*

Epilepsy is a common cause of psychosocial disability and has been perceived to have a profound impact on the social functioning of individuals with epilepsy. In Zimbabwe a combination of developing world economic priorities (with provision of social and health services for disabled people not a major goal) and culturally mediated perceptions of epilepsy as a non-medical and feared stigma may further disadvantage people with epilepsy (PWE) in this respect. In order to assess both the level of psychosocial functioning of individuals with epilepsy and their own perception of it, three groups of people were sampled: attenders at a specialized epilepsy clinic and members of two community-based support groups. All completed a brief quality-of-life questionnaire with activities of daily living added. Those carers present completed the same questionnaire at the time of sampling. The results indicated that 36 of 38 people with epilepsy sampled, and their carers, did not perceive themselves to have sufficient cognitive impairment to interfere with social functioning, work performance or relationships with other as assessed by a subsection of the WHO SIDAM (objective evaluation of cognitive performance) interview. However, an adapted activities of daily Living Questionnaire (ADLQ) showed that three-quarters of carers (and two-thirds of PWE) felt that functioning was mildly to moderately reduced, particularly in the areas of solving daily problems and speed of thinking. One-quarter of PWE experienced problems with relationships to others, just less than one-fifth of PWE reported more than four areas of reduced functioning. Of special interest was the fact that 25 (66%) reported sexual functioning as not applicable, although only four of these were of an age group which is not sexually active (less than 15 years old). In addition one-third of the central Hospital Group reported difficulties with using public transport, but none of the Community Support Group members, implying that the use of Public transport becomes an issue when it is necessary to travel long distances and that PWE curtail their travel but do not necessarily view this as a restriction. The samples chosen were from groups which, compared with PWE as a whole, are likely to include more disabled individuals, because attenders at a specialized epilepsy clinic and members of support groups self-select for more symptomatic epilepsy and a visibility. Therefore the proportion of PWE perceived to have difficulties with ADL in this project is not representative for PWE as a whole. The implications of our study are firstly that there is a significant need for selected groups of PWE in Zimbabwe to receive attention to psychosocial abilities and secondly that there are certain specific areas such as sexual functioning and the use of transport which deserve special attention. A much more detailed inventory of neuro-psychological tests will be of value to plan treatment strategies for those selected by the crude screening instruments used in this project. An important future comparison will be a survey of ADL and psychosocial functioning amongst PWE in rural communities, because it is uncertain whether PWE in rural communities are generally more or less disabled than those in the city.

The Cessation of Cancer Treatment as a Crisis

ABSTRACT Although it is commonly acknowledged that a diagnosis of cancer can be a form of a crisis precipitating a period of disequilibrium, few researchers have examined the psychosocial issues associated with the completion of adjuvant cancer treatment. This exploratory study examines the responses of women in a community-based cancer support group to an open-ended question asking them to describe their experiences since their treatment ended. Subjects were asked to respond to whether they felt the loss of the “safety net” of treatment had caused them any type of distress. The narrative responses of the subjects support the notion that the period after treatment ceases may be viewed as a crisis that brings with it anxiety and uncertainty. The results of this study reinforce the need for additional research to better understand the issue so that services and programs can be enhanced to better meet patients' needs. Additionally, the results suggest that social workers may play a crucial role in helping women make the transition from cancer “patient” to cancer “survivor.”

Adaptive coping among family members of persons with serious mental illness

This study sought to describe factors associated with adaptive coping by family members with a psychiatrically disabled relative. A total of 225 family members of persons with serious mental illness were interviewed. Hierarchical regression analysis using five variables that may have contributed to adaptive coping was conducted. The five factors were demographic characteristics of the family member, severity of the relative's illness, the family member's subjective burden and grief, social support, and personal coping resources (self-efficacy and mastery). More extensive adaptive coping was associated with increased social support as measured by the density of the social network, the extent of affirming social support, and participation in a support group for families. Better coping was also associated with a greater sense of self-efficacy in dealing with the relative's mental illness. Adaptive coping was not associated with the severity of the relative's illness. The findings suggest that mental health professionals should encourage family members to use the support provided by community-based support groups and to form such groups if none are available.

Social support, support groups, and breast cancer: a literature review.

A review of medical, social science, and "grassroots" literature on support groups and breast cancer, this paper concerns the need among women living with breast cancer and their caregivers for more information on the efficacy of social support as a therapeutic intervention. The literature has been subdivided into reviews of articles dealing with professionally led support groups, community-based support groups, support groups and survival, and support groups and psychological adjustment.

Evaluating Process, Outcome, and Satisfaction in Community-Based Cancer Support Groups

This paper presents an investigation into the process, outcome and satisfaction in three types of cancer support groups: patients with cancer, bereaved spouses and other relatives. The groups followed a model similar to that of Spiegel and Spira's supportive- expressive groupwork (1991). At post-test 392 clients completed a group process and consumer satisfaction questionnaire. In addition, 77 clients also completed the Brief Symptom Inventory (Derogatis & Melisaratos, 1983) as a pre- and post-test. The Brief Symptom Inventory data indicated clients were able to achieve more optimal emotional functioning following support group participation Patients were the least satisfied of the three conditions and bereaved spouses the most satisfied. Recommendations are offered for screening, group composition, and future research.

Consortium Building: Wide-base Support and Promotion of Breastfeeding in the Community

A New Jersey WIC program has enhanced county-wide support for breastfeeding by establishing and acting as an anchor for a successful Breastfeeding Consortium. Creating a forum for breastfeeding educators, community-based support groups, and health-care providers has improved communication and fostered a sense of unified purpose for consortium members from a variety of backgrounds. A useful directory of county breastfeeding services and attractive displays for local health fairs has improved breastfeeding promotion.

Survival in amyotrophic lateral sclerosis. The role of psychological factors.

Examining the relationship between psychological status and survival in amyotrophic lateral sclerosis. Our hypothesis is that psychological distress is associated with greater mortality and shorter survival time than psychological well-being. Cross-sectional, longitudinal. The baseline evaluations used were disease severity and 10 psychometric tests. A psychological status score was derived from these tests. Survival status was monitored for 3.5 years. Interviewers were blinded to other interviews and data analysis. Patient's residence. The criteria for eligibility were diagnosis of amyotrophic lateral sclerosis by a neurologist, dementia or alcoholism absent, communication in English, and any severity or length of disease. It was a volunteer sample consisting of 144 patients from amyotrophic lateral sclerosis clinics or community-based amyotrophic lateral sclerosis support groups. In this sample 66% were men, 94% were white, mean age at diagnosis was 55 years, 79% were married, 60% had some college education, and 61% died during the study. None. mortality during study, survival time from intake to last follow-up. Comparison between high and low psychological score groups: 32% of high and 82% of low died; survival curves were significantly different. Controlling for confounding factors (length of illness, disease severity, age), patients with psychological distress had a greater risk of mortality (relative risk, 6.76; 95% confidence limits, 1.69 to 27.12) and greater likelihood of dying in any given time period (relative risk, 2.24; 95% confidence limits, 1.08 to 4.64) than those with psychological well-being. Adjusting for confounding factors, psychological status is strongly related to outcome in amyotrophic lateral sclerosis. Further studies on psychological status should be done to confirm its prognostic value.

Functions of an Adult Sickle Cell Group: Education, Task Orientation, and Support

Although psychosocial concerns of patients with sickle cell disease have been described, these descriptions are based primarily on experience with adolescents and children. In addition, there is an absence of reports on sickle cell groups specifically designed for adult patients. This article reports on the development of an adult sickle cell support group and provides a description of the psychosocial factors most prevalent in patients' lives. Major adjustment difficulties for group members included increasing anxiety about death, the disruption of their social support network, disability, dependence on pain medication, and conflicts with health care providers. This community-based support group enhanced participants' knowledge about sickle cell disease, improved the physician-patient relationship, and helped resolve psychosocial adjustment problems.

More Than a Nine-to-Five Job

During the past decade and half, human service providers and policy planners have begun to attend to issues of family caregivers of the elderly. At the same time, interest in and concern for the employed caregiver has surfaced. Now, and increasingly in the future, demographics are destiny; indeed, the greying of America makes long-term care critical concern. Specifically, the growth of the cohort of the old old, those 85 years of age and older, presents the greatest challenge for society. Elaine Brody, prominent gerontologist, says that meeting the chronic care needs of older relatives has become a normative family stress.' This article draws on the extensive experience of The Brookdale Center on Aging of Hunter College (BCOA) related to caregiver concerns. In 1978, the Administration on Aging2 funded pioneer program in which BCOA collaborated with the Community Service Society of New York to develop community-based caregiver support groups. Since that

A community-based support group for HIV positive I.V. drug abusers: The HERO program

The I.V. drug abuser who has a history of non-compliance is perhaps the most difficult to reach among those at risk for contracting AIDS. This article details one approach being attempted at HERO, that of a community-based support group run by an indigenous worker where the emphasis is on support, education, and outreach to others. HERO's program is also highlighted.

Developing a Community-Based Parent Education Support Group

Parent support groups have been recognized by nurses as an effective, efficient method of parent education. While professional literature offers information about conducting such groups and suggested content, little information is available to assist the professional in group development. A discussion of theoretical and practical considerations in needs analysis, organization, and publicizing a parent education support group is presented.

As Parents Grow Older:

For those older persons with families, the family is the vital, natural support system while also being the link between the older person and formal community supports. No matter how many community services and supports are provided for older persons, these services only supplement the emotional ties and support from the families. Enhancing the family's supportive role is crucial. This paper describes a community based support group model called As Parents Grow 0lder as an example of a systematic, effective effort to provide services to this natural system. This model has evolved and been used with 10 different groups totalling l25 participants over the past four years.

The Arts Education Collaborative: Tucson's Model Arts Advocacy Program

A community-based support group can do much to enhance the art education program in a school district, these authors believe. They describe the organization and goals of one such group active in Tuc son, Arizona.