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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Dissertation•
01 Apr 2019
TL;DR: MotivATE as discussed by the authors is a pre-treatment motivational web-based intervention to improve treatment attendance at an eating disorders service, and the authors explore the factors that might influence engagement with online support tools.
Abstract: Engaging people with psychological treatment is vital to ensuring effective outcomes. This is particularly relevant to the treatment of eating disorders, as up to 35% of individuals referred to an eating disorder service never access treatment. Internet- based programs have emerged as a novel approach to the treatment of eating disorders, however these too have reported issues with lack of uptake and engagement. The aims of this research were (1) to assess the effectiveness of a novel pre-treatment motivational web based intervention (MotivATE) at improving treatment attendance at an eating disorders service, and (2) to explore the factors that might influence engagement with online support tools. An initial systematic review indicated that brief motivational interventions were acceptable for addressing low motivation to change and engagement issues, with online interventions highlighted as a viable delivery method. However, the results of a zelen randomised trial in a local eating disorder service showed no increase in attendance for those offered access to the MotivATE intervention. Only one third of participants offered access to MotivATE actually registered to use the intervention, suggesting that issues with uptake were potentially a key factor in the lack of demonstrated effectiveness. A concurrent online focus group suggested that whilst people with eating disorders do identify a potential role within treatment for online support such as MotivATE, this is limited by negative attitudes towards these approaches which may contribute to low uptake. However, it was also noted that factors such as exposure to online support and effective design may serve to help mitigate these negative attitudes. This was supported by an online survey in which participants rated a range of designs of the front page of MotivATE for aesthetics and behavioural indicators derived from an adapted technology acceptance model. Multi-level modelling of this data showed that judgements of simplicity and craftsmanship significantly influenced behavioural intentions towards the intervention; a finding that was supported in a final online study that compared levels of use and changes in attitudes pre/post between MotivATE and a version redesigned using the factors highlighted in the previous study. Whilst MotivATE was not shown to be effective at improving treatment attendance in its current state, digital approaches may still represent a viable and potentially effective approach to addressing issues with treatment engagement, particularly early in the treatment pathway. However, in order not to themselves be significantly impacted by low engagement, the way in which these interventions are both designed and presented needs to be carefully considered. This research provides a novel contribution to the literature both through the development and piloting of an intervention to increase treatment engagement in people with eating disorders, as well as furthering our understanding of how users engage with digital interventions, in particular the role of visual aesthetics.
4 citations
TL;DR: It is found that significant others are influential regarding their family members'/friends' use/non-use of rehabilitation resour...
Abstract: Aims: Despite identified benefits, many people do not participate in cardiac rehabilitation (CR) programmes and coronary heart disease (CHD) self-help groups when recovering from myocardial infarction (MI). Little is known about the influence of ‘significant others’ regarding participation, their role, and the significant others’ experience of rehabilitation without these resources. This article describes research aiming to explore the role of significant others in such non-participation, and their experiences and perspectives, and, from this, identify implications for policy and practice. Methods: A qualitative study was carried out in Lothian, Scotland. In-depth interviews were carried out with 27 people who had not participated in CR and/or a CHD Group after discharge from hospital 6–14 months previously following myocardial infarction, and 17 of their nominated significant others. Findings: Significant others are influential regarding their family members'/friends' use/non-use of rehabilitation resour...
4 citations
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TL;DR: Because self-help groups are free of charge and allow unlimited attendance, they provide ongoing support to participants regardless of limits imposed by financial resources and managed health care and provide vital access to care for underserved groups.
Abstract: A self-help group is an organization of individuals sharing a common concern who meet regularly to provide and receive emotional support and to exchange information. Self-help groups exist for nearly every health and social support problem; this makes them a useful referral source for mental health professionals. Further, because self-help groups are free of charge and allow unlimited attendance, they provide ongoing support to participants regardless of limits imposed by financial resources and managed health care. Self-help groups thus provide vital access to care for underserved groups. In fact, individuals with low incomes (less than $20,000/year) and low social support are more likely to participate than individuals with higher levels of economic and support resources (Klaw & Humphreys, 2004). Although self-help groups have traditionally convened through face-to-face meetings, in recent years Internet self-help forums have proliferated.
Keywords:
self-help;
mutual-help;
mutual-aid
4 citations
01 Jan 2006
TL;DR: In this paper, the meaning of music therapy for cancer patients was explored and a song was written to describe the feeling of homesickness that is experienced by cancer patients, which is consistent with lifelong learning as this pertains to cancer survivors.
Abstract: The song this article sings is derived from findings of an arts-informed inquiry that explored the meaning of music therapy cancer support and conceives therapy as education-about-the-self. It is consistent with lifelong learning as this pertains to cancer survivors and is applicable to other groups of learners. Cancer A cancer diagnosis is one of the most feared and serious of life events that produces stress on individuals and families. Cancer disrupts social, physical and emotional well-being and results in a range of emotions, including anger, fear, sadness, guilt, embarrassment and shame. Invasive treatment procedures can be stressful, painful and may result in permanent body changes. Themes commonly experienced by cancer patients are fear of death and disease recurrence, problems related to long and short-term effects of treatment, changes in personal relationships and economic issues. Family and friends can become overwhelmed by the crisis. (Daste & Rose, 2005) According to Svenaeus (2001), illness is best understood as unhomelike ways of being- in-the-world: Human life (bios) suffers (pathe) from a basic homesickness that is let loose in illness. If this unhomelikeness is taken as the essence of illness, the mission of health-care professionals must consequently be not only to cure diseases, but actually, through devoting attention to the being-in-the-world of the patient, also to open up possible paths back to homelikeness. (p. 104) Frank (1995) says that serious illness is a loss of the "destination and map" that had previously guided the person's life. Once diagnosed, the cancer patient may never return to normal again but dwells forever in the remission society (Frank, 1991).
4 citations
Cites background from "Who talks? The social psychology of..."
...Davison et al (2000) conclude this is because there is a strong relationship between social marginalization (embarrassment, disfigurement, stigma, life threat) and support group participation levels....
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TL;DR: Web based support can help address some of the families’ needs of support, although it encompasses certain limitations.
Abstract: Background: Web based modalities should be explored to support families living with mental illness. A web based tool including a psychoeducative module, a diary and a password protected forum was developed aimed at relatives’ of a person with schizophrenia to alleviate daily life. Aim: The aim of the present study was to explore participants’ use of the web based tool with focus on the forum and its potential health and psychosocial benefits. Methods: Nineteen persons participated in this explorative open trial. The forum posts were analyzed using content analysis. Self-rating instruments assessing caregiver burden, stigma and the tool’s usability were analyzed with descriptive statistics. Results: The qualitative analysis resulted in four main categories and subcategories describing relatives’ situation and interaction in the forum: Caring for a Person with Schizophrenia, Crisis and Care, Secrecy vs Openness, and Interaction and Social Support. Experiences of caregiver burden, but also fulfillment with caregiving tasks were reported. Concealing or hiding the family’s mental illness was common, but also the ability to use inner strength to cope with stigma and discrimination. The mean usability score was 59 (70 = good). Conclusion: Web based support can help address some of the families’ needs of support, although it encompasses certain limitations. Patient rights and the availability of resources, especially in cases of emergency, need to be made easily visible and accessible to alleviate families’ burden.
4 citations
Cites background from "Who talks? The social psychology of..."
...High levels of support have been observed in support groups for illnesses that are embarrassing, socially stigmatizing or disfiguring and for illnesses with interpersonal consequences [16]....
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...As seen in previous research [9] meeting similar others may help decrease feelings of alienation and isolation, not the least in connection with stigmatizing conditions and illnesses with interpersonal consequences [16]....
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References
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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