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.
Citations
More filters
TL;DR: A small, interview-based study of ten HIV-positive Ugandan women taking part in an occupational therapy incomegeneration group sought to identify reasons for falling attendance at the group, and found women attributed a range of social, emotional and practical benefits to group attendance.
Abstract: Little is known of the occupational therapy interventions available to occupational therapy clients living with the human immunodeficiency virus (HIV) in the developing world. Part 1 of this article outlined the background literature in this area. Part 2 details a small, interview-based study of ten HIV-positive Ugandan women taking part in such an intervention; an occupational therapy incomegeneration group. The study sought to identify reasons for falling attendance at the group. The study findings reflect both the challenges of being HIV-positive, and the factors influencing women's participation in the group. The women attributed a range of social, emotional and practical benefits to group attendance, relating these to social support and empowerment, as well as opportunities to go beyond the home environment, learn new skills and earn money. The negative aspects of group attendance cited were all interpersonal in nature, relating to conflict with participants' peers and group leaders. This study discu...
5 citations
Dissertation•
01 Jan 2014
5 citations
Dissertation•
01 Jan 2011
5 citations
Dissertation•
01 Sep 2017
TL;DR: It is indicated that uncertainty, anxiety over cancer development and guilt over transmission constitute a biographical disruption among women aware of their HPV positive status, and that the use of online support may be helpful in managing the uncertainty of HPV positivity.
Abstract: Background: The implementation of human papillomavirus (HPV) DNA detection as the primary screening tool for screening and management of cervical intraepithelial neoplasia (CIN) proposed for roll-out in 2019-2020 will diagnose more women as HPV positive than are currently diagnosed with CIN due to the relative differences in prevalence between conditions (Sargent et al. 2008; Peto et al. 2004). At present there is no acceptable treatment for HPV (McRae et al. 2014). Anxiety over positivity (Friedman & Shepeard 2007), stigma (Kim 2012), and uncertainty (Kosenko et al. 2012) may constitute a biographical disruption. The stigmatised nature of HPV mean support from regular channels may be restricted due to fears of social rejection following disclosure (Kosenko et al. 2012; Crandall & Moriarty 1995). Online support might instead be utilised to allow access to disease information and social support. Methods: The study was a mixed methods study based on the follow-up explanations model, involving the administration of an online survey questionnaire (N = 107). Following descriptive data analysis, individuals were recruited for email interviews to describe their lived experiences of HPV positivity (N = 3). These narratives were then analysed using thematic analysis. Findings: Women responding to the questionnaire and the interviews reported anxiety over fears of transmission to loved ones. Interview narratives disclosed themes of anxiety caused by the mismanagement of information (too much/too little, conflicting or given at the wrong moment), uncertainty over viral clearance and residual issues of stigma. Women reported the use of online support to exchange information and experiences and provide emotional support. Conclusions: Both the questionnaire and the interview data indicate that uncertainty, anxiety over cancer development and guilt over transmission constitute a biographical disruption among women aware of their HPV positive status, and that the use of online support may be helpful in managing the uncertainty of HPV positivity.
5 citations
Dissertation•
17 Jul 2013
TL;DR: This thesis was conducted within the context of the pilot and main phase of a randomised controlled trial evaluating the effectiveness of memory rehabilitation for people experiencing memory problems following traumatic brain injury, stroke and multiple sclerosis.
Abstract: Part A: Memory rehabilitation is a promising approach to address memory difficulties although its effectiveness with neurologically impaired individuals is yet to be established (Chapter 1). This thesis was conducted within the context of the pilot and main phase of a randomised controlled trial (ReMind) evaluating the effectiveness of memory rehabilitation for people experiencing memory problems following traumatic brain injury (TBI), stroke and multiple sclerosis (MS). The trial compared the effects of restitutive and compensatory memory rehabilitation strategies with a self-help control intervention on memory functioning, mood, activities of daily living and mental adjustment. The quantitative data obtained in this trial did not provide strong evidence to support the effectiveness of the intervention. The use of inappropriate outcome measures may account for the contradictory or inconclusive findings of the ReMind and other memory rehabilitation studies. Chapter 2 provides a review of measures that were used in the ReMind trial and/or were commonly used to evaluate outcome in memory rehabilitation studies. A lack of measures that considers the aims of memory rehabilitation and the needs of neurologically impaired individuals was observed. The post-intervention interviews of participants (N=19) in the pilot phase of the ReMind were analysed thematically (Chapter 3). Participants reported benefits in areas that were not covered by existing quantitative outcome measures such as insight into the nature and severity of their memory problems, confidence in their ability to manage these difficulties and qualitative improvements in the use of memory aids.
The aim of the following studies was to develop and evaluate a questionnaire responsive to the effects of memory rehabilitation following acquired brain injury. The process included two stages:
Part B: Identification of the content of AMEDO questionnaire: At this stage, studies were conducted within the main phase of the ReMind trial. The content areas of the questionnaire were identified based on the input and feedback of participants in each of the three memory rehabilitation programmes (Restitution, Compensation and Self-help groups). A mixed methods design was followed and information was drawn from two sources:
1)Real time observations of 43 sessions were performed (Chapter 4). The study introduced a new recording strategy by using a time sampling method to qualitatively record the content of conversations. Group activity was also evaluated. Following a quantitative content analysis method, observations were grouped into categories and their frequency was assessed in order to systematically describe and compare the content of the three programmes.
2)Semi-structured post-intervention interviews were conducted with 20 participants to explore their experience in the groups (Chapter 5). Recurrent patterns of data were identified inductively following a thematic analysis approach. Interviews from each programme were analysed separately and the emerging themes were compared and contrasted to highlight similarities and differences between the programmes. The majority of participants perceived the main benefits of memory rehabilitation to be: a) responding to their need for information on the cognitive effects of brain injury, b) enhancing their sense of self-efficacy and control over their memory difficulties, c) motivating them to adopt a more proactive attitude towards the management of these problems. The advantages of the group based approach to rehabilitation were also highlighted by most respondents.
Questionnaire items were generated to cover the key content areas that were identified in both studies: memory knowledge, awareness, emotional adjustment, active coping, control beliefs, attention, significant others (comprised Part A of the questionnaire), the use of external memory aids (comprised Part B1) and the use of internal memory aids (Part B2).
Part C: Evaluation of the psychometric properties of Adaptation to Memory Difficulties Outcome questionnaire (AMEDO): The final study of this thesis (Chapter 6) evaluated the psychometric properties of the new questionnaire. The first version of AMEDO included 45 items rated on a 4-point Likert scale (strongly disagree-strongly agree). Face validity was assessed by researchers and clinicians experienced in the area of neurological rehabilitation. The psychometric properties of AMEDO were evaluated by posting the questionnaire to a sample of people with MS and TBI identified through hospital records. It was returned by 110 people with MS and 34 people with TBI and 87 of these participants returned the second questionnaire that was sent to assess stability.
After applying the criteria of face validity, response distribution, and construct validity 15 items were retained in Part A of the questionnaire, and four items in Parts B1 and B2 respectively. The distribution of responses was acceptable for all items except for the ones assessing the use of external memory aids which displayed negative skew (ceiling effects). Principal component analysis indicated that the questionnaire captured most of the content areas it was designed to cover. Part B1 and B2 formed two distinct subscales assessing effectiveness in the use of external and internal memory aids respectively. Part A comprised three components: “Memory knowledge”, “Control” and “Emotional adjustment”. Evaluation of item-convergent validity confirmed the three factor solution. Internal consistency estimates for all the subscales were found to be satisfactory (α=.74-.84). Correlations between the subscales indicated that the represented constructs were related in meaningful ways. Test–retest reliability coefficients for the subscales ranged between r=.60 to r=.82. The biggest discrepancies were found in the “Memory knowledge” and external memory aids (EMA) subscales whereas the “Control” and “Emotional adjustment” showed acceptable levels of stability. Differences between test-retest scores in the former subscales dropped to satisfactory levels when analyses were repeated excluding respondents who completed the 2nd questionnaire more than a month after completing the 1st questionnaire. This finding indicated that the observed differences between scores at Time 1 and Time 2 may be reflective of actual changes taking place during that interval. Finally, it was shown that scores were not significantly affected by age, diagnosis and time since injury and, therefore, the questionnaire may be relevant to a wider neurological population.
In conclusion, AMEDO is a brief and simple measure tailored to the characteristics and needs of neurologically impaired individuals. The questionnaire shows promise as an outcome measure specific to the effects of memory rehabilitation, to complement memory batteries and established generic measures. Further evaluation of the scale should confirm the stability of the questionnaire and assess its responsiveness to changes following memory rehabilitation.
5 citations
References
More filters
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....
[...]
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