Informal social support for chronic pain and distress in people with HIV: identifying targets for intervention

Social factors are consequences and determinants of chronic pain, yet little is known about how informal social support operates for people with chronic pain and HIV. The overlapping burdens of emotional distress and chronic pain in people living with HIV raise the need to identify targets for culturally resonant treatments. This qualitative study explored how people living with chronic or recurrent pain and HIV seek informal social support for pain and distress from their social networks, how these networks operate, and how social support is influenced by socio-ecological factors. Adults with virally suppressed HIV who endorsed pain over repeated weeks were purposively sampled (n=18). Semi-structured, individual in-depth interviews explored individuals' experiences of living with HIV and chronic pain, distress and its relationship to pain, and help-seeking behaviours for chronic pain and distress. Codebook thematic analysis was used within an interpretivist epistemological approach. Support for pain involved more tangible actions by fewer people than support for distress. Disruptions in social support were more likely when the person with pain was irritable, socially withdrawn, or unable to fulfil social roles. Interpersonal conflict could also cause or increase pain and distress. Current pain assessments rarely identify the social interference of pain identified here. This work identified potential targets for individual-level interventions to sustain informal social support: individuals' abilities to cope with daily stressors, pain self-management strategies to facilitate socialisation and engagement in valued life activities, and strategies to prevent support fatigue in informal social networks.