A research report submitted to the Faculty of Health Sciences, University of the Witwatersrand, Johannesburg, in partial fulfillment of the requirements for the degree of Master of Public Health. Johannesburg, June 2017 / Introduction South Africa is grappling with the challenge of providing lifelong treatment, care and support to young people living with HIV (YPLHIV). The 2012 HIV Prevalence, Incidence and Behaviour Survey placed HIV prevalence among young people aged 15-24 at 7.1% (Shisana et al. 2014). Concerns abound around young people, and centre around low testing rates in this age group (Shisana 2014), their propensity for risky behaviours such as unprotected sex, age disparate relationships (Shisana et al. 2014) and high loss to follow up of ART-eligible youth (Cornell et al. 2010, Nglazi et al. 2012; Wang 2011). In the Western Cape province where HIV prevalence is 4.4% (Shisana et al. 2014) Clinic X provides integrated adolescent and youth-friendly health services including HIV counseling and testing, sexual and reproductive health, ART and other services for adolescents and youth aged 12-25 years. Services include facilitator-led support group meetings and private WhatsApp and Facebook groups for HIV-positive youth (van Cutsem et al. 2014). The aim of the study was to explore how social support is experienced by HIV positive young people from Clinic X who participate in support groups at the clinic, on WhatsApp and Facebook and to understand how support group membership is perceived to impact their HIV-related behaviours, if at all, during 2015 and 2016. The specific objectives were to (1) identify dimensions of social support experienced by YPLHIV, aged 18-25, in clinicbased and online support groups at Clinic X; (2) explore perceived social cohesion among YPLHIV aged 18-25 who participate in online support groups compared to those who only participate in clinic-based support groups and (3) explore perceptions of HIV positive young people at Clinic X in Khayelitsha regarding the influence of support groups on their behaviour during 2015 and 2016. Methods A cross-sectional exploratory qualitative study was conducted, namely focus group discussions (FGDs) and in-depth interviews (IDIs). Ethical clearance was obtained from the Human Research Ethics Committee (Medical) of the University of the Witwatersrand in October 2015. The researcher collected data for the study during December 2015 and November 2016 at Clinic X, which is one of two youth clinics in the Khayelitsha Health District of the Western Cape Metro Region. Participants were purposively sampled for the FGD component of the study from the population of young people aged 18-25 years old who attended support group meetings at Clinic X. The researcher purposively sampled interviewees for the IDIs from participants identified during the FGDs. Male and female individuals aged 18 to 25 years old who had been diagnosed HIV-positive, were enrolled in pre-ART or ART care at Clinic X Youth clinic and were participating in a youth club were included. Two FGDs were held, one for users of the online platforms and another for participants in face-to-face youth clubs meetings only. Twenty participants in total were included in the FGDs. Another nine in depth interviews were held with participants purposively sampled from the FGDs. Thematic analysis was used to analyze all data, which were recorded electronically, professionally transcribed and coded using MaxQDA. Key themes from data analysis included types of social support experienced, sense of belonging, desire to remain in the support groups and susceptibility to peer influence. Inductive themes included HIV-related behaviours, barriers to use of online platforms and sources of social support. Results Exploring the dimensions of social support revealed that peers within the youth clubs experienced emotional and informational support during youth club meetings as well as online. Emotional support was underpinned by the youth’s positive affect for each other based on shared experiences and the resultant feelings of being understood by their peers. The youth also received emotional and instrumental support from various other sources: health workers, family, and intimate partners as well as friends. The youth opened up about barriers to their seeking or accepting support from family or online as well as their perceptions about the consequences of the attitudes of individuals in their lives and community members about HIV. Participants’ perceptions about various indicators of social cohesion within the group showed that, while there was a sense of belonging, there were also limits in the extent to which youth felt susceptible to influence from peers in the youth clubs. Youth expressed a desire to remain in face-to-face youth clubs but were ambivalent about continued participation in the virtual clubs. Findings on the third objective revealed that the youth felt that the youth clubs had improved their knowledge and they were confident to maintain health-protecting behaviours. Seeing other youth looking healthy and overcoming challenges also motivated the youth. The behavioural intentions of YPLHIV were underpinned by gendered motivations for maintaining health, with young women being especially motivated by the desire for motherhood. Discussion To the body of evidence, this study contributes a qualitative understanding of how young people living with HIV experience social support online, showing that the dimensions of social support experienced are the same as those of participants of online health forums for other chronic conditions, namely information and emotional support (Gaysyknsky et al. 2014). Further, the study shows that for YPLHIV, online support groups may act as a barrier to the exchange of instrumental support, which research (Atukunda 2017) identifies as a salient need in this context. In seeking to understand why there may be disjuncture between the intention of pre-ART YPLHIV in the study to remain in care and the actual retention reported in numerous studies, the chapter proposes that social comparison, structural determinants and low risk perception may play a role. The major limitations of the study are the short time of engagement and exclusion of adolescents below 18 years of age who access services at the youth clinic. Conclusion and recommendations In conclusion, online peer groups foster peer support among YPLHIV, with implications on their emotional health. Still, more needs to be done to change perceptions about the use of online platforms for social support, design community-focused programmes to address gaps in support and reduce the financial burden on young people using mobile phones for health. / MT2017

Ample research has examined the impact of autism for children and families, but less has addressed the effects of this condition for adults. The literature indicates that adults on the autism spectrum suffer from depression and have a heightened risk of suicidal ideation because of their social skills deficits. Research also shows that individuals with high-functioning autism (HFA) can benefit from participating in support groups. In addition, research indicates that use of the term "neurodiversity" rather than other diagnostic labels encourages increased self-esteem to persons on the autism spectrum. This grounded theory study sought to understand the belief of clinicians with regard to the incorporation of the concept of neurodiversity in support groups for adults with HFA. The population for this study comprised clinicians who led support groups for adults with HFA. The specific foundational theories used were Tuckman's stage model of group development and Salzer's peer support model. Data consisted of 3 pilot study interviews and 12 additional interviews. Participant recruitment occurred through LinkedIn, and interviews took place online through the chat modality GoToMeeting. Interview data were entered into NVivo and a Van Kaam coding procedure was used to decipher recurring themes. Key results indicated that clinicians believe that the incorporation of the concept of neurodiversity can help adults with autism to build self-esteem and change the way individuals with HFA consider the condition, which in turn can assist them to build social skills, and relationships with their peers. Positive social change that may result from this study includes encouragement for increased use of the concept of neurodiversity as a tool in support groups for people with HFA, and stimulation of further study of this concept for decreasing bias against those with HFA.

In an effort to improve understanding of the role that support groups such as the National Stuttering Association (NSA) play in helping people who stutter, speech-language pathologists who participate in the NSA were asked to participate in a research survey. Previous research and anecdotal evidence has shown that support groups not only benefit people who stutter, but also the professionals who work with them. Participation in the NSA can enhance SLPs' understanding of stuttering, and their comfort level and competence working with people who stutter. However, the relationship between support groups and professionals has not been adequately studied. / text

This research project explores the use of virtual support groups by women diagnosed with breast cancer in South Africa. Through a content analysis of the online forums and eight in-depth interviews with women of various backgrounds (age, race and socio-economic status) it becomes evident that women use these virtual spaces for information exchange, sense of belonging, search for meaning and most significantly support. Various factors within the illness experience of breast cancer influence the initial use, continuation, breaks and withdrawal from of these online forums. The analysis of online forums is framed around concepts of lay consultation, gender, adaptation theory and social capital to conceptualise and make sense of these virtual interactions. The virtual groups allow women to read and write on breast cancer according to their perceptions and experiences, thereby lessening the dominant medical power to create space for their personal voices. The interactions on the forums foster a sense of empowerment, social support and social engagement critical to their wellbeing and adaptation to the condition. This study also brings attention to the lack of studies about virtual groups within the South African context which is increasingly becoming significant as more and more individuals use virtual groups as part of health lay interaction and consultation.

Students with learning disabilities (LDs) represent 9% of students attending college, and college administrators must comply with a large number of federal requirements outlining the provision of educational services for students with LDs, including offering support groups. Nurse-facilitated support groups, held within the university setting, could provide effective social support, increasing likelihood of college success among students with LDs. The purpose of this project was to develop a plan for implementing nurse-facilitated support groups for students with LDs within the student health services (SHS) department at a university designed to improve their coping skills on personal, social, and academic levels. Guided by the Logic Model, a plan for implementing nurse-facilitated support groups within the SHS department was developed and presented to university stakeholders. Components of the plan included a support group structure, curriculum, evaluation tools, steps for piloting the program, and a proposed timeline for implementing the program. The stakeholders acknowledged the potential benefits of initiating a program of nurse-facilitated support groups for students with LDs to assist in attaining their academic goals. However, additional analysis of the program and refining and other disabilities to assist in attaining their academic goals; however, additional analysis of the program and refining the proposed student self-evaluation tool were needed before implementing the program. Nurses in a SHS department staff are effective support group facilitators for students with LDs. This study holds the potential for positive social change by enhancing personal, social, and academic coping skills with nurse-facilitated support groups who may help students with LDs reduce their risk of experiencing burnout and enhance the likelihood of academic success.

Support groups are an effective source of support in a number of populations (e.g., Beaudoin & Tao, 2007; Preyde & Ardal, 2003; Singer, et al., 1999). Parents of children with autism spectrum disorders (ASD) are a particularly stressed group who can benefit from support (Blacher & McIntyre, 2006). These studies investigated: 1) predictors of participation in support groups for parents of children with ASD and 2) the effects of participation in an online support group for these parents. One hundred seventy-eight parents completed a series of online questionnaires measuring their beliefs about support groups and ASD, coping style, social support, mood, parenting stress, and their child’s autistic symptoms and daily functioning. Parents who were currently using parent support groups (PSGs) reported using more adaptive coping strategies than both parents who had never used PSGs and parents who had used PSGs in the past. Parents who had used PSGs in the past reported that they did not find the groups as beneficial as parents who were currently using them, and parents who had never participated in PSGs reported several issues with accessibility that made it difficult to participate in PSGs. A smaller group of parents (n = 36), who had participated in the first study, participated in an online support group designed for this study. An additional group of parents (n = 25), who had also completed the first study, served as a no-treatment control group. The parents in these two groups completed a subset of the questionnaires used in the first study following the 4-month support group, so that changes in mood, anxiety, parenting stress, and positive perceptions could be documented over time. No significant differences between the groups and across time were found. However, parents who participated in the group reported being satisfied with the support they received and finding the group helpful. Overall, the results of these studies suggest that interventions for parents of children with ASD need to be individualized and focused on the needs of the parents. Further research is required to investigate the efficacy of online support groups for parents of children with ASD. / Thesis (Ph.D, Psychology) -- Queen's University, 2011-06-20 10:55:21.845

Women living with HIV often feel isolated. One significant avenue for HIV-positive women to receive the support, information, and affiliation they need is through gender-specific HIV support groups, but research is lacking about how support groups for HIV-positive women can be helpful. This exploratory study examined HIV-positive women's perceptions about their experiences in women-only HIV support groups. Seventy-one women attending nine women-only HIV support groups in Alabama, Georgia, and South Carolina were surveyed. Benefits from attendance included: (a) increase in medication compliance, (b) decreased risk behavior for re-exposure to HIV, (c) reduced feelings of shame, and (d) a network of friends to socialize with. Results indicate that even if women-only HIV support groups do not stress behavior or lifestyle changes, these are often by-products of support group attendance.

Students with learning disabilities (LDs) represent 9% of students attending college, and college administrators must comply with a large number of federal requirements outlining the provision of educational services for students with LDs, including offering support groups. Nurse-facilitated support groups, held within the university setting, could provide effective social support, increasing likelihood of college success among students with LDs. The purpose of this project was to develop a plan for implementing nurse-facilitated support groups for students with LDs within the student health services (SHS) department at a university designed to improve their coping skills on personal, social, and academic levels. Guided by the Logic Model, a plan for implementing nurse-facilitated support groups within the SHS department was developed and presented to university stakeholders. Components of the plan included a support group structure, curriculum, evaluation tools, steps for piloting the program, and a proposed timeline for implementing the program. The stakeholders acknowledged the potential benefits of initiating a program of nurse-facilitated support groups for students with LDs to assist in attaining their academic goals. However, additional analysis of the program and refining and other disabilities to assist in attaining their academic goals; however, additional analysis of the program and refining the proposed student self-evaluation tool were needed before implementing the program. Nurses in a SHS department staff are effective support group facilitators for students with LDs. This study holds the potential for positive social change by enhancing personal, social, and academic coping skills with nurse-facilitated support groups who may help students with LDs reduce their risk of experiencing burnout and enhance the likelihood of academic success.

The purpose of this study was to describe the perceptions of women diagnosed with gynecologic cancers or pre-cancers regarding participation in an online support group. The study contributed to the literature regarding online support for women with gynecologic cancers and pre-cancers. The data were analyzed using the descriptive univariate analysis method of frequency distribution presented in percentages. Out of a population of 472 members of an online support group for women with gynecologic cancers and pre-cancers, 379 (80%) participated in the study. A survey instrument consisting of 6 parts was used in this study. Part I and Part IV of the instrument were designed to collect data regarding the benefits (personal enrichments) of participating in an online support group. Part II and Part III were designed to collect data regarding the advantages of a support group being online, while Part V collected data regarding online support, illness, information, awareness, and sense of self. Part VI collected demographic information and personal information. The research questions posed in the study were developed to examine benefits, advantages, and information about participating in an online support group. The results from this study indicated that there are many benefits (personal enrichments) of online support for the women with gynecologic cancers and pre-cancers who joined these groups, as well as many advantages for them of a support group being online. The results also suggested that although these members were demographically different and were experiencing a variety of gynecologic cancers and pre-cancers, they were very cohesive in their wants and needs from online support. The results indicated that the experiences, both physical and emotional, of the women in these groups were more similar than different. Conclusions and recommendations based on the findings in this study indicated that online support is a positive addition to the lives of the women dealing with cancers and pre-cancers and that more in-depth studies should be conducted and the information disseminated to cancer patients.

Previous studies suggest that the reasons that Hispanics do not use support groups might include utilizing the family as an informal support group structure, the use of spiritual support, language barriers, the lack of access to a computer and the Internet, the lack of face-to-face interactions in Internet groups, and the lack of cultural competence. Therefore, the purpose of this study was to explore the attitudes of Hispanics toward Internet cancer support groups (ICSGs) and reasons for the lack of participation in ICSGs. In this feminist qualitative study, 30 Hispanic individuals who were receiving cancer care were contacted for telephone interviews. The participants were interviewed to obtain their responses to questions related to current use and interest in using ICSGs. The researcher used qualitative thematic analysis to analyze the data. Four major themes arose. They were the need for a strong social network, attitudes about information access, concrete barriers to obtaining support, and the need for respect and empowerment. The major theme of “a strong social network” includes five sub-themes: (a) differences in online and face-to-face communication; (b) loneliness, isolation; (c) existence or lack of familial support; (d) spiritual support; and (e) informal support. Participants had mixed attitudes about information access. Positive attitudes were more common and included wanting to learn about their disease and learn how to obtain information and support via computer. Some participants did not want to obtain information, and some had negative attitudes about learning to use the computer. Many participants did not own a computer and had transportation problems that limited their access to a computer. The theme involving the need for respect and empowerment addressed the empowering use of Spanish in support of Hispanic cancer patients and empowerment via the group leader, who was Hispanic. The findings suggest a need to develop culturally competent ICSGs for Hispanics. One goal would be to augment instead of replace support. For example, an ICSG could have a spiritual basis, or there might be several ICSGs—one each for patients, families, and supporters such as friends from church. ICSGs also could target people without these supports. The existing knowledge should be used to provide direction for future research and for the development of cancer support groups that could meet the unique needs of Hispanic cancer patients. / text