Studying online support communities: Investigating network patterns and characteristics of social support

People’s activities on the internet have expanded from mainly retrieving information to communicating with each other in virtual settings. Thus, research investigating social interactions in online communities is becoming more and more important. However, the multi-faceted approaches of existing studies for the analysis of online communities make it difficult to combine the findings into a comprehensive understanding. This shows the need for holistic investigations of online communities. This thesis provides such a holistic approach by investigating a combination of different aspects of a selected online support community for older people. MOSuC (Model of Online Support Communities), a model describing the key aspects of online support communities was developed based on existing theories of computer-mediated communication (CMC) as well as theoretical perspectives on social support. Five studies were conducted, each addressing one of the different aspects of the case study community: (i) the message content, (ii) the conversations structure, (iii) the social network of related community members, (iv) the roles that online community members take on, and (vi) the taget population’s needs concerning the exchange of social support in online communities. The findings of these individual studies were then combined in context of MOSuC in order to provide a holistic description of the community. As a result, this thesis provides detailed insight into the characteristics of the case study community as well as the interplay and dependencies between different aspects of the community. Based on the integration of multiple studies, the thesis sheds light on two main issues: the characteristics of the individual aspects of the community as well as how these aspects are related to and affect each other. In addition to the findings of the studies, the thesis also contributes MOSuC, which serves both as a theoretical framework of the aspects of online support communities, as well as a practical tool for integrating the individual studies. In addition, the application, modification and integration of multiple methods in this thesis provide a novel methodological way for an integrative analysis of online support communities

Online peer support for people with Young Onset Dementia: development of a best practice guidance

Introduction: Peer support can be very valuable for people with Young Onset Dementia (YOD) (diagnosis before the age of 65). People with YOD face unique challenges compared to older adults and often experience stigma. YOD can have a negative impact on someone’s sense of self, identity, and social roles in the community. Peer support provides social opportunities where people experience mutual understanding and empathy because they are all experiencing similar challenges. People also exchange practical information on dementia and signpost support services. In the United Kingdom, availability of age-appropriate, in-person peer support services is inconsistent, and many people may miss out on the potential benefits. Online peer support could be a solution, as it overcomes geographical barriers and offers a variety of platforms and modes of communication. The aim of this thesis was to develop a Best Practice Guidance on online peer support for people with YOD, and specific guidelines for peer support facilitators. Methods: This thesis followed the Medical Research Council (MRC) guidelines on complex interventions and focused on the development stage, including different sub-studies. First, a systematic literature study was conducted, followed by 4 focus groups, an online survey with 69 respondents, and 9 interviews. All participants were people living with YOD. Finally, participants, professionals, and researchers provided input on the Best Practice Guidance. Findings: For many people with YOD (online) peer support is a lifeline and gives hope and a sense of purpose. Some were hesitant to engage in peer support, for example because they were anxious about seeing others in an advanced stage, or they did not know what to expect. Others were unaware of online peer support options and how they could get involved. This indicates a need for better advertisement and signposting. The Best Practice Guidance provides (1) people with YOD with information on what online peer support entails, (2) group facilitators with guidelines on how to optimise online peer support for people with YOD, and (3) healthcare professionals with an opportunity to signpost to online peer support

Online peer support for people with Young Onset Dementia: development of a best practice guidance

Introduction: Peer support can be very valuable for people with Young Onset Dementia (YOD) (diagnosis before the age of 65). People with YOD face unique challenges compared to older adults and often experience stigma. YOD can have a negative impact on someone’s sense of self, identity, and social roles in the community. Peer support provides social opportunities where people experience mutual understanding and empathy because they are all experiencing similar challenges. People also exchange practical information on dementia and signpost support services. In the United Kingdom, availability of age-appropriate, in-person peer support services is inconsistent, and many people may miss out on the potential benefits. Online peer support could be a solution, as it overcomes geographical barriers and offers a variety of platforms and modes of communication. The aim of this thesis was to develop a Best Practice Guidance on online peer support for people with YOD, and specific guidelines for peer support facilitators. Methods: This thesis followed the Medical Research Council (MRC) guidelines on complex interventions and focused on the development stage, including different sub-studies. First, a systematic literature study was conducted, followed by 4 focus groups, an online survey with 69 respondents, and 9 interviews. All participants were people living with YOD. Finally, participants, professionals, and researchers provided input on the Best Practice Guidance. Findings: For many people with YOD (online) peer support is a lifeline and gives hope and a sense of purpose. Some were hesitant to engage in peer support, for example because they were anxious about seeing others in an advanced stage, or they did not know what to expect. Others were unaware of online peer support options and how they could get involved. This indicates a need for better advertisement and signposting. The Best Practice Guidance provides (1) people with YOD with information on what online peer support entails, (2) group facilitators with guidelines on how to optimise online peer support for people with YOD, and (3) healthcare professionals with an opportunity to signpost to online peer support

The Social Side of the Internet

Presents survey findings on Americans' level of participation in voluntary groups by type of group, demographics, and Internet and social media use, as well as views on the role of the Internet in group connections, activities, and accomplishments

Community care in Scotland

This ethnological perspective of Community Care in Scotland will focus on historical, political, and social contexts and their influences on the community care arrangements for individuals within various types of communities in Scotland today

The well-being of carers of older Aboriginal people living in the Kimberley region of remote Western Australia: Empowerment, depression, and carer burden

Objective: To describe demographic features and well-being of carers of Aboriginal Australians aged ≥45 years in remote Western Australia. Method: Carer burden, empowerment, and depression were assessed in 124 Aboriginal carers in four remote Aboriginal communities. Results: Carers were aged 38.8 ± 15.0 years, 73.4% were female, and 75.8% were children or grandchildren of the person cared for. The mean Zarit-6 score was 3.7 ± 3.6. Attending high school (odds ratio [OR] = 0.3; 95% confidence interval [CI] = [0.1, 0.7]) and feeling empowered (OR = 0.2; 95% CI = [0.1, 0.8]) were inversely associated with carer burden; female carers were less likely to feel empowered (OR = 0.4; 95% CI = [0.2, 0.9]); and empowerment was inversely associated with depression (OR = 0.3; 95% CI = [0.1, 0.7]). Discussion: Aboriginal carers in remote communities are relatively young and most are children or grandchildren. Carer burden was lower than anticipated. However, existing tools may not adequately measure Aboriginal perspectives. Education and empowerment are key factors which support programs must consider

The roles of adult siblings in the lives of people with severe intellectual and developmental disabilities

BACKGROUND: Siblings of people with intellectual and developmental disabilities (IDD) often assume key roles to support their brothers and sisters. For people with more significant support needs, siblings may undertake additional roles and responsibilities throughout their lives. The purpose of the present study was to identify and describe the roles of adult siblings who have a brother or sister with severe IDD. METHOD: Seventy‐nine adult siblings from 19 to 72 years of age completed an online survey with open‐ended questions about the roles they play in their relationships with their brother or sister. RESULTS: Thematic analysis resulted in identification of several roles including caregiver, friend (social partner), advocate, legal representative, sibling (teacher/role model), leisure planner and informal service coordinator. CONCLUSION: Siblings assume key roles in the lives of people with IDD and need support from family and professionals to perform these roles.Accepted manuscrip

Developing personal relationships in care homes: realising the contributions of staff, residents and family members

Personal relationships are all integral part of living, working and visiting in care homes, but little research has made relationships the main focus of enquiry, and there have been few studies of the perspectives of residents, staff and family members. The study reported here sought to redress this neglect. Using a constructivist approach, the nature and types of relationships between residents, staff and family members were explored in three care homes in England using combined methods including participant observation, interviews and focus groups. The data collection and analysis Occurred iteratively Over 21 months and three types of relationships were identified: 'pragmatic relationships' that primarily focus oil the instrumental aspects of care; 'personal and responsive relationships' that engage more fully with the particular needs of individual residents; and 'reciprocal relationships' that recognise the roles of residents, staff and family members in creating a sense of community within the home. This paper explores the contributions made by staff; residents and family members in the development of these relationships. The findings enhance our understanding of the role of inter-personal relationships in care home settings and of the factors that condition them. The implications for developing improved practice in care ponies are also considered

An exploration of the value and mechanisms of befriending for older adults in England

Social isolation and loneliness in older adults are growing problems. Empirical research suggests that loneliness can lead to poorer health outcomes including higher mortality rates. Befriending has been shown to decrease loneliness and depression although the exact mechanisms of action are unclear. In this study we aimed to explore experiences and identify key ‘ingredients’ of befriending through interviews conducted with 25 older adults who had used five different befriending services across England. We used Berkman's theoretical model of how individual social networks impact on health to help interpret our data and explore the mechanisms of befriending for older adults. Findings suggest that befriending offers some compensation for loss of elective relationships from older adults’ social networks, providing opportunities for emotional support and reciprocal social exchange through development of safe, confiding relationships. Good conversational skills and empathy were the foundation of successful relationships within which commonalities were then sought. Befrienders broadened befriendees’ perspectives on life (particularly among older adults in residential care). Social engagement was a powerful mechanism of action, particularly in terms of connecting people back into the community, reinforcing meaningful social roles and connecting to a past life that had often been significantly disrupted by loss. Understanding key components and mechanisms of befriending for older adults may facilitate development of more effective and theoretically sound befriending services