Who talks? The social psychology of illness support groups.
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.
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TL;DR: It is argued that action research can contribute both to the generation of knowledge, as well as a greater sense of ownership to the program among those who are intended to use it, and offers an important contribution for the further development of health care services.
48 citations
TL;DR: A qualitative analysis of 1,000 posts from the PatientsLikeMe (PLM) ALS online discussion examines the social support within the PLM ALS online community and explores ways community members share and build knowledge.
Abstract: Amyotrophic lateral sclerosis (ALS) is a progressively debilitating neurodegenerative condition that occurs in adulthood and targets the motor neurons. Social support is crucial to the well-being and quality of life of people with unpredictable and incurable diseases such as ALS. Members of the PatientsLikeMe (PLM) ALS online support community share social support but also exchange and build distributed knowledge within their discussion forum. This qualitative analysis of 1,000 posts from the PLM ALS online discussion examines the social support within the PLM ALS online community and explores ways community members share and build knowledge. The analysis responds to 3 research questions: RQ1: How and why is knowledge shared among the distributed participants in the PLM-ALS threaded discussion forum?; RQ2: How do the participants in the PLM-ALS threaded discussion forum work together to discover knowledge about treatments and to keep knowledge discovered over time?; and RQ3: How do participants in the PLM-ALS forum co-create and treat authoritative knowledge from multiple sources including the medical literature, healthcare professionals, lived experiences of patients and "other" sources of information such as lay literature and alternative health providers? The findings have implications for supporting knowledge sharing and discovery in addition to social support for patients. © 2014 ASIS&T.
47 citations
TL;DR: It is concluded that health professionals need to tailor the services they provide to adolescent patients more appropriately when it comes to social support provision.
Abstract: The present study sought to explore the types of social support being provided to adolescents with cancer accessing a computer-mediated support group. Three hundred and ninety-three messages posted to a computer-mediated support group aimed at adolescents with cancer were coded for instances of informational and emotional support and then subjected to thematic analysis. Analysis revealed frequent instances of both informational and emotional support provision and sub-themes included 'treatment concerns', 'losing friends' and 'struggling with school'. Adolescents were also found to be frequently accessing the group to make requests for social support. It is concluded that health professionals need to tailor the services they provide to adolescent patients more appropriately.
46 citations
TL;DR: This is the first randomised controlled trial of the effectiveness of a depression ISG and assesses depressive symptoms, social support, self-esteem, quality of life, depression literacy, stigma and help-seeking for depression.
Abstract: Recent projections suggest that by the year 2030 depression will be the primary cause of disease burden among developed countries. Delivery of accessible consumer-focused evidenced-based services may be an important element in reducing this burden. Many consumers report a preference for self-help modes of delivery. The Internet offers a promising modality for delivering such services and there is now evidence that automated professionally developed self-help psychological interventions can be effective. By contrast, despite their popularity, there is little evidence as to the effectiveness of Internet support groups which provide peer-to-peer mutual support. Members of the community with elevated psychological distress were randomised to receive one of the following: (1) Internet Support Group (ISG) intervention, (2) a multi-module automated psychoeducational and skills Internet Training Program (ITP), (3) a combination of the ISG and ITP, or (4) an Internet Attention Control website (IAC) comprising health and wellbeing information and question and answer modules. Each intervention was 12 weeks long. Assessments were conducted at baseline, post-intervention, 6 and 12 months to examine depressive symptoms, social support, self-esteem, quality of life, depression literacy, stigma and help-seeking for depression. Participants were recruited through a screening postal survey sent to 70,000 Australians aged 18 to 65 years randomly selected from four rural and four metropolitan regions in Australia. To our knowledge this study is the first randomised controlled trial of the effectiveness of a depression ISG. Current Controlled Trials ISRCTN65657330.
46 citations
Cites background from "Who talks? The social psychology of..."
...Such support groups have been estimated by Eysenbach to be used by 'millions' of consumers daily [18] and there is evidence that they are particularly popular among consumers with depression [19]....
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TL;DR: This feasibility study found that the 3 caregivers who completed the study were satisfied with Caring~Web©, a Web-based intervention for support for support, and rated their health as average to excellent and their satisfaction with caring as good.
Abstract: The primary aim of this feasibility study was to determine if caregivers (n = 5) were willing and able to use Caring-Web, a Web-based intervention for support, from their home Internet connection for 3 months. The caregivers' perceived health and satisfaction with caring, as well as the care recipients' use of healthcare services, were recorded. The experience of caring (problems and successes) was examined. Data were collected via weekly online surveys and e-mail discussions. Descriptive analyses revealed that the 3 caregivers who completed the study were satisfied with Caring-Web. Caregivers rated their health as average to excellent and their satisfaction with caring as good. Care recipients averaged 6 calls/visits to a medical office with one emergency room visit and subsequent hospitalization. Major problems for the caregivers included dealing with medical conditions about which they lacked knowledge. Content analysis of the e-mail discussions revealed that subjects sought information about medical conditions related to caring for the survivor of the stroke. Major successes for the caregivers involved communicating effectively with the care recipient and returning to everyday life with family and friends.
45 citations
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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 1970TL;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....
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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
3,765 citations