Supporting carers in online role-diverse communities: A case study in Australia

Health Soc Care Community. 2022 Nov;30(6):e6030-e6043. doi: 10.1111/hsc.14038. Epub 2022 Sep 26.

Abstract

This study aims to understand the effects that role-diverse online communities have on informal carers, particularly in providing support. Australian Facebook communities used to support those involved in the National Disability Insurance Scheme (NDIS) were explored. Social network analysis of an NDIS-centred community was conducted, based on 909 publicly visible interactions that occurred in May-June and August-September 2019. Two managers of informal NDIS communities were interviewed, the transcripts of which were analysed using NVivo. Results from the two analyses suggest that both an individual carer's attributes and the collective attributes of the network defined the capability of the network to support the carer, often depending on the experiences and expertise of those offering support. Support was unconstrained by role, though differing goals and expectations often impeded collaboration between roles. The outcomes of support provision were shown to affect not only individuals but also the collective network. However, while effective, community spaces currently lack organisational backing and resources available to informal communities are constrained. Findings drawn from this study, which we believe are applicable to a broader, international context, are three-fold. Firstly, it is recommended that informal support communities clearly define purpose and create multiple channels to ensure that all participants can meet their needs. Secondly, the benefits of participation to organisations should be further explored. Finally, the use of social network analysis as a method in this study has provided significant insights into the communication patterns and activities of the community under study. Future use of SNA in similar studies may provide further insight into the effectiveness and interactions of community-based support methods.

Keywords: community networks; family carers; information networks; online social networking; social media; social support.

MeSH terms

  • Australia
  • Caregivers*
  • Health Services
  • Humans
  • Insurance, Disability*