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Journal ArticleDOI

Who talks? The social psychology of illness support groups.

01 Jan 2000-American Psychologist (American Psychological Association)-Vol. 55, Iss: 2, pp 205-217
TL;DR: Support seeking was highest for diseases viewed as stigmatizing and was lowest for less embarrassing but equally devastating disorders, such as heart disease, and implications for social comparison theory and its applications in health care are discussed.
Abstract: More Americans try to change their health behaviors through self-help than through all other forms of professionally designed programs. Mutual support groups, involving little or no cost to participants, have a powerful effect on mental and physical health, yet little is known about patterns of support group participation in health care. What kinds of illness experiences prompt patients to seek each other's company? In an effort to observe social comparison processes with real-world relevance, support group participation was measured for 20 disease categories in 4 metropolitan areas (New York, Chicago, Los Angeles, and Dallas) and on 2 on-line forums. Support seeking was highest for diseases viewed as stigmatizing (e.g., AIDS, alcoholism, breast and prostate cancer) and was lowest for less embarrassing but equally devastating disorders, such as heart disease. The authors discuss implications for social comparison theory and its applications in health care.
Citations
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Journal ArticleDOI
TL;DR: Findings indicate that exploratory and purposeful social support-seeking behaviors exert varying effects on the change in uncertainty in illness and are influenced differently by the perceived information credibility of users, their identification with a community, and the perceived severity of their illness.

10 citations

Journal ArticleDOI
11 Nov 2019-BMJ Open
TL;DR: The SPIN-SSLED Programme was feasibly delivered, including management, resource and scientific aspects, and participant satisfaction was high, indicating it is ready to be tested in a full-scale randomised controlled trial.
Abstract: Objectives The Scleroderma Patient-centered Intervention Network—Scleroderma Support group Leader EDucation (SPIN-SSLED) Programme was designed to improve confidence and self-efficacy and to reduce burden for support group leaders. Objectives were to (1) evaluate feasibility of programme delivery, including required resources, management issues and scientific aspects (eg, performance of outcome measures) and (2) assess user satisfaction and identify any modifications needed to improve programme content or delivery based on participant feedback. Design Non-randomised feasibility trial. Setting North American patient organisations. Participants Current support group leaders or potential new leaders referred by patient organisations. Intervention The programme included 13 modules delivered live via videoconference over 3 months (April to July 2018) in 60 to 90 min sessions. Outcome measures (1) Elements of feasibility, including enrolment and consent procedures, percentage of referred group leaders who consented to participate, session attendance and technical support requirements; (2) programme usability, understandability, organisation and clarity; (3) leader satisfaction with the programme and (4) planned trial outcome measures, including support group leader self-efficacy, burnout, emotional distress and physical function. Results All 12 referred potential participants consented to enrol, and 10 were included in two training groups of five participants each. Participants attended 95% of sessions. Required technical support was minimal, and videoconferencing technology functioned well. Overall programme satisfaction rating was 9.4/10. Mean item rating on the eight items of the Client Satisfaction Questionnaire-8 was 3.83 (1=low satisfaction; 4=high satisfaction). Pre-post scores on the Scleroderma Support Group Leader Self-efficacy Scale increased by 1.7 SDs (large effect); scores on burnout, emotional distress and physical function improved by 0.44, 0.38 and 0.45 SDs (moderate effects). Conclusion The SPIN-SSLED Programme was feasibly delivered, including management, resource and scientific aspects. Participant satisfaction was high. The programme is ready to be tested in a full-scale randomised controlled trial. Trial registration number NCT03508661

10 citations

Dissertation
05 Jan 2012
TL;DR: This dissertation uses a multi-method approach to examine the role of online communities as a source of peer-to-peer supportive care for breast cancer survivors.
Abstract: This dissertation uses a multi-method approach to examine the role of online communities as a source of peer-to-peer supportive care for breast cancer survivors. A collection of four studies is presented. Study 1) A systematic search of the Internet identified 111 active online communities for breast cancer survivors with extensive archives of personal health experiences (one third had over 100,000 posts each as of 2010-10-26). More than one-third (36.0%) were initiated by breast cancer survivors or loved ones, and more than two-thirds (69.5%) were maintained with little or no professional input. Study 2) An analysis of Facebook (www.Facebook.com) identified 620 public breast cancer groups containing a total of 1,090,397 members as of 2008-11-23. The majority of groups were created for fundraising and awareness purposes (92.6%), rather than supportive care (7.4%).

9 citations

Journal ArticleDOI
12 Dec 2019-Trials
TL;DR: The SPIN-SSLED trial will test whether a training program for SSc patient support group leaders increases the self-efficacy of group leaders to carry out leadership tasks, and whether the program has the potential to significantly improve the effectiveness and sustainability of existing SSc support groups, to increase the number of available support groups and to be adapted for other chronic diseases.
Abstract: Some people with rare diseases rely on peer-led support groups for disease-specific education and emotional and practical support. Systemic sclerosis (SSc), or scleroderma, is a rare autoimmune connective tissue disease. Many people with SSc cannot access support groups, and, when support groups exist, they may not be sustained due to challenges that could be addressed via leader training. The Scleroderma Patient-centered Intervention Network (SPIN), along with SSc patient organization partners, developed a training program for SSc patient support group leaders, the Scleroderma Support group Leader EDucation (SPIN-SSLED) Program. We recently completed a feasibility trial in which we successfully delivered the program to two groups of support group leaders who reported a high level of satisfaction with the program and its delivery. The primary objective of the full-scale SPIN-SSLED trial is to evaluate the effect of the program on support group leaders’ self-efficacy for carrying out their leadership role. Secondary objectives include evaluating effects on leader burnout, leader satisfaction (participation efficacy), and emotional distress. The SPIN-SSLED trial is a pragmatic randomized controlled trial (RCT) in which 180 support group leaders will be randomly allocated to training groups of 6 participants each or to a waitlist control. We will use a partially nested RCT design to reflect dependence between individuals in training groups, but not in the waitlist control. Participants allocated to the training program will receive the 13-module SPIN-SSLED Program, delivered via webinar over the course of 3 months in weekly 60–90-min sessions. The primary outcome is leader self-efficacy, measured by the Scleroderma Support Group Leader Self-efficacy Scale post-intervention. Secondary outcomes are leader self-efficacy at 3 months post-intervention, and leader burnout, volunteer job satisfaction (participation efficacy), and emotional distress post-intervention and at 3 months post-intervention. The SPIN-SSLED trial will test whether a training program for SSc patient support group leaders increases the self-efficacy of group leaders to carry out leadership tasks. The program has the potential to significantly improve the effectiveness and sustainability of existing SSc support groups, to increase the number of available support groups, and to be adapted for other chronic diseases. ClinicalTrials.gov, NCT03965780. Registered on 29 May 2019.

9 citations

Journal ArticleDOI
TL;DR: Four African American women living with HIV suggested that they be filmed discussing the “dark side” of HIV in an effort to create an intergenerational education intervention that would alter the risk-taking behavior that they observed in young women in their community.

9 citations

References
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Journal ArticleDOI
TL;DR: In this article, the authors pointed out that there is a strong functional tie between opinions and abilities in humans and that the ability evaluation of an individual can be expressed as a comparison of the performance of a particular ability with other abilities.
Abstract: Hypothesis I: There exists, in the human organism, a drive to evaluate his opinions and his abilities. While opinions and abilities may, at first glance, seem to be quite different things, there is a close functional tie between them. They act together in the manner in which they affect behavior. A person’s cognition (his opinions and beliefs) about the situation in which he exists and his appraisals of what he is capable of doing (his evaluation of his abilities) will together have bearing on his behavior. The holding of incorrect opinions and/or inaccurate appraisals of one’s abilities can be punishing or even fatal in many situations. It is necessary, before we proceed, to clarify the distinction between opinions and evaluations of abilities since at first glance it may seem that one’s evaluation of one’s own ability is an opinion about it. Abilities are of course manifested only through performance which is assumed to depend upon the particular ability. The clarity of the manifestation or performance can vary from instances where there is no clear ordering criterion of the ability to instances where the performance which reflects the ability can be clearly ordered. In the former case, the evaluation of the ability does function like other opinions which are not directly testable in “objective reality’. For example, a person’s evaluation of his ability to write poetry will depend to a large extent on the opinions which others have of his ability to write poetry. In cases where the criterion is unambiguous and can be clearly ordered, this furnishes an objective reality for the evaluation of one’s ability so that it depends less on the opinions of other persons and depends more on actual comparison of one’s performance with the performance of others. Thus, if a person evaluates his running ability, he will do so by comparing his time to run some distance with the times that other persons have taken. In the following pages, when we talk about evaluating an ability, we shall mean specifically the evaluation of that ability in situations where the performance is unambiguous and is known. Most situations in real life will, of course, present situations which are a mixture of opinion and ability evaluation. In a previous article (7) the author posited the existence of a drive to determine whether or not one’s opinions were “correct”. We are here stating that this same drive also produces behavior in people oriented toward obtaining an accurate appraisal of their abilities. The behavioral implication of the existence of such a drive is that we would expect to observe behaviour on the part of persons which enables them to ascertain whether or not their opinions are correct and also behavior which enables them accurately to evaluate their abilities. It is consequently

16,927 citations

Book
01 Jan 1878
TL;DR: The Red River of the North basin of the Philippines was considered a part of the Louisiana Purchase by the United States Department of Commerce in the 1939 Census Atlas of the United Philippines as discussed by the authors.
Abstract: 1 Includes drainage basin of Red River of the North, not a part of any accession, but in the past sometimes considered a part of the Louisiana Purchase. i Includes Baker, Canton, Enderbury, Rowland, Jarvis, Johnston, and Midway Islands; and also certain other outlying islands (21 square miles). 3 Commonwealth of the Philippines, Commission of the Census; 1939 Census, Census Atlas of the Philippines. Source: Department of Commerce, Bureau of the Census.

10,650 citations

Book
01 Jan 1970
TL;DR: Yalom as mentioned in this paper described the course of therapy from both the patient's and the therapist's viewpoint in Encounter Groups: First Facts (1973) and Every Day gets a Little Closer: A Twice-Told Therapy (1974).
Abstract: This book first appeared in 1970 and has gone into two further editions, one in 1975 and this one in 1985. Yalom is also the author of Existential Psychotherapy (1980), In-patient Group Psychotherapy (1983), the co-author with Lieberman of Encounter Groups: First Facts (1973) and with Elkin of Every Day Gets a Little Closer: A Twice-Told Therapy (1974) (which recounts the course of therapy from the patient's and the therapist's viewpoint). The present book is the central work of the set and seems to me the most substantial. It is also one of the most readable of his works because of its straightforward style and the liberal use of clinical examples.

4,235 citations


"Who talks? The social psychology of..." refers background in this paper

  • ...In a similar vein, Yalom (1995) has asserted that self-help groups offer a unique venue for growth, social experimentation, and change....

    [...]

Journal ArticleDOI
TL;DR: Greater use of the Internet was associated with declines in participants' communication with family members in the household, declines in the size of their social circle, and increases in their depression and loneliness.
Abstract: The Internet could change the lives of average citizens as much as did the telephone in the early part of the 20th century and television in the 1950s and 1960s. Researchers and social critics are debating whether the Internet is improving or harming participation in community life and social relationships. This research examined the social and psychological impact of the Internet on 169 people in 73 households during their first 1 to 2 years on-line. We used longitudinal data to examine the effects of the Internet on social involvement and psychological well-being. In this sample, the Internet was used extensively for communication. Nonetheless, greater use of the Internet was associated with declines in participants' communication with family members in the household, declines in the size of their social circle, and increases in their depression and loneliness. These findings have implications for research, for public policy and for the design of technology.

4,091 citations