Understanding Online and Offline Social Networks in Illness Management of Older Patients With Asthma and Chronic Obstructive Pulmonary Disease: Mixed Methods Study Using Quantitative Social Network Assessment and Qualitative Analysis

Abstract

Background Individuals’ social networks and social support are fundamental determinants of self-management and self-efficacy. In chronic respiratory conditions, social support can be promoted and optimized to facilitate the self-management of breathlessness. Objective This study aimed to identify how online and offline social networks play a role in the health management of older patients with chronic respiratory conditions, explore the role of support from online peers in patients’ self-management, and understand the barriers to and potential benefits of digital social interventions. Methods We recruited participants from a hospital-run singing group to a workshop in London, the United Kingdom, and adapted PERSNET, a quantitative social network assessment tool. The second workshop was replaced by telephone interviews because of the COVID-19 lockdown. The transcripts were analyzed using thematic analysis. Results A total of 7 participants (2/7, 29%, men and 5/7, 71%, women), with an age range of 64 to 81 years, produced network maps that comprised between 5 and 10 individuals, including family members, health care professionals, colleagues, activity groups, offline and online friends, and peers. The visual maps facilitated reflections and enhanced participants’ understanding of the role of offline and online social networks in the management of chronic respiratory conditions. It also highlighted the work undertaken by the networks themselves in the self-management support. Participants with small, close-knit networks received physical, health, and emotional support, whereas those with more diverse and large networks benefited from accessing alternative and complementary sources of information. Participants in the latter type of network tended to communicate more openly and comfortably about their illness, shared the impact of their illness on their day-to-day life, and demonstrated distinct traits in terms of identity and perception of chronic disease. Participants described the potential benefits of expanding their networks to include online peers as sources of novel information, motivation, and access to supportive environments. Lack of technological skills, fear of being scammed, or preference for keeping illness-related problems for themselves and immediate family were reported by some as barriers to engaging with online peer support. Conclusions In this small-scale study, the social network assessment tool proved feasible and acceptable. These data show the value of using a social network tool as a research tool that can help assess and understand network structure and engagement in the self-management support and could be developed into an intervention to support self-management. Patients’ preferences to share illness experiences with their online peers, as well as the contexts in which this can be acceptable, should be considered when developing and offering digital social interventions. Future studies can explore the evolution of the social networks of older people with chronic illnesses to understand whether their willingness to engage with online peers can change over time.