JMIR Publications

ABSTRACT

Background:

Individuals' social network and social support are fundamental determinants of self-management and self-efficacy.

Objective:

To identify how online and offline social networks play a role in health management for patients with chronic respiratory conditions. To explore the role of support from online peers in patients’ self-management, and understand the barriers and potential benefits to digital social interventions.

Methods:

We recruited participants from a hospital-run singing group to a workshop in London, UK, and adapted PERSNET, a quantitative social network assessment tool on a secure open-source web platform (REDCap), to generate social maps of online and offline individuals involved in managing participants’ chronic respiratory conditions. The second workshop was replaced by telephone interviews due to COVID-19 lockdown. We analyzed the transcripts using thematic analysis.

Results:

Seven participants (2M, 5F), with an age range of 64 to 81, produced network maps that comprised between 5 and 10 individuals, including family members, healthcare professionals, colleagues, activity groups, offline and online friends, and peers. Participants with small, close-knit networks received physical, health, and emotional support, whereas those with more diverse and large networks benefited from accessing alternative/complementary sources of information. Participants in the latter type of network tended to communicate more openly about their illness, shared the impact their illness had on their day-to-day life, and demonstrated distinct traits in terms of identity and perception of chronic disease. During the COVID-19 lockdown, additional themes emerged, including the need to develop the ability to switch from offline to online communication. Participants described potential benefits of expanding their network to include online peers, as source 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/immediate family were reported as barriers to engage with online peer support.

Conclusions:

The social network assessment tool proved feasible and acceptable. 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 of people with asthma or COPD. These data show the value of using a social network tool as an intervention that can support self-management, and as a research tool that can help assess and understand network structure and engagement in the self-management support of people with chronic respiratory conditions. Patients’ preferences to share illness experiences with online peers, and 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 people with chronic illnesses to understand whether willingness to engage with online peers can change over time. Clinical Trial: n/a