RESUMEN
BACKGROUND: Loneliness is a significant well-being issue that affects older adults. Existing, commonly used social connection platforms do not contain facilities to break the cognitive cycle of loneliness, and loneliness interventions implemented without due processes could have detrimental effects on well-being. There is also a lack of digital technology designed with older adults. OBJECTIVE: We aimed to iteratively design a user-centered smartphone app that can address loneliness in older adults. The aim of this study was to investigate the loneliness-related psychological processes that our conceptual smartphone app promotes. We also identified the emergent needs and concerns that older adults raised regarding the potential benefits and detriments of the app. METHODS: We used technology probes to elicit older adults' reflections on the concept of using the app in 2 studies as follows: concept focus groups (n=33) and concept interviews (n=10). We then conducted a prototype trial with 1 week of use and follow-up interviews (n=12). RESULTS: Thematic analysis explored the experiences and emergent challenges of our app through the design process. This led to the development of 4 themes as follows occurring in all 3 qualitative data sets: reflection on a digital social map is reassuring; app features encourage socializing; the risk of compounding loneliness; and individuals feel more control with mutual, socially beneficial activities. CONCLUSIONS: Smartphone apps have the potential to increase older adults' awareness of the richness of their social connections, which may support loneliness reduction. Our qualitative approach to app design enabled the inclusion of older adults' experiences in technology design. Thus, we conclude that the older adults in our study most desired functionalities that can support mutual activities and maintain or find new connections rather than enable them to share an emotional state. They were wary of the app replacing their preferred in-person social interaction. Participants also raised concerns about making the user aware of the lack of support in their social network and wanted specific means of addressing their needs. Further user-centered design work could identify how the app can support mutual activities and socializing.
RESUMEN
OBJECTIVE: A quarter of people diagnosed with cancer lack social support. Online cancer communities could allow people to connect and support one another. However, the current proliferation of online support communities constitutes a range of online environments with differing communication capacities and limitations. It is unclear what is perceived as online cancer community support and how different features can help or hinder supportive group processes. This study aimed to explore how perceived support is influenced by the different features and formats of online support environments. METHODS: In-depth qualitative interviews were conducted with 23 individuals affected by a range of cancer diagnoses, including both cancer survivors and family members. Data were analysed using deductive thematic analysis guided by a constructivist epistemological perspective. FINDINGS: Online supportive communities were defined and differentiated by two themes. Firstly, 'Open forums' were identified with thematic properties which facilitated a uniquely informative environment including 'Safety in anonymity', 'Perceived reliability' and 'Exposure and detachment'. Secondly, 'Secret groups' were identified with thematic properties which enhanced an emotionally supportive environment including 'Personalised interactions', an overt 'Peer hierarchy', and 'Crossing the virtual divide'. CONCLUSIONS: Properties of groups can engender different degrees of interpersonal relations and different supportive interactions. In particular, support community designers may want to adapt key features such as anonymity, trustworthiness of websites, and the personalised nature of conversations to influence the development of supportive environments. In personalised peer-led groups, it may be prudent to provide guidance on how to reassert a positive environment if arguments break out online.
RESUMEN
PURPOSE: People affected by cancer often have unmet emotional and social support needs. Online cancer communities are a convenient channel for connecting cancer survivors, allowing them to support one another. However, it is unclear whether online community use makes a meaningful contribution to cancer survivorship, as little previous research has examined the experience of using contemporary cancer communities. We aimed to explore the experiences of visitors to online cancer communities. METHODS: Twenty-three in-depth interviews were conducted with online cancer community visitors, including cancer survivors (n = 18), family members (n = 2), and individuals who were both a survivor and family member (n = 3). Interviews were analysed using a grounded theory approach. RESULTS: A theory developed explaining how individuals 'navigated' the experience of cancer using online cancer communities. Online advice and information led participants on a 'journey to become informed'. Online friendships normalised survivorship and cast participants on a 'journey to recreate identity'. Participants navigated a 'journey through different worlds' as they discovered relevant and hidden communities. CONCLUSIONS: This theory highlights virtual paths people affected by cancer can take to self-manage their experience of the disease. Online community experiences can be improved by promoting online evaluation skills and signposting visitors to bereavement support. IMPLICATIONS FOR CANCER SURVIVORS: Cancer survivors can benefit through both lurking and posting in online communities. However, individuals risk becoming distressed when they befriend individuals who may soon die. Additionally, people affected by rarer cancers can struggle to find shared experiences online and may need to look elsewhere for support.
