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

Abstract 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 Disruptions in social support were more likely when the person with pain was irritable, socially withdrawn, or unable to fulfil social roles.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. Competing Interest Statement VJM is an unpaid associate director of the not-for-profit organisation, Train Pain Academy. RP receives speakers' fees for talks on pain and rehabilitation, is a director of the not-for-profit organisation, Train Pain Academy, and serves as a councillor for the International Association for the Study of Pain. All authors declare no other conflicts of interest. Funding Statement This work was funded by NIH award K43TW011442 to VJM. SR was supported by NIMH and FIC (1K43TW012840); RRE was supported by NIH award K24 NS126570. Author Declarations I confirm all relevant ethical guidelines have been followed, and any necessary IRB and/or ethics committee approvals have been obtained. Yes The details of the IRB/oversight body that provided approval or exemption for the research described are given below: The Human Research Ethics Committees at the University of Cape Town and City of Cape Town gave ethical approval for this work (approvals 764/2019 and 24699). I confirm that all necessary patient/participant consent has been obtained and the appropriate institutional forms have been archived, and that any patient/participant/sample identifiers included were not known to anyone (e.g., hospital staff, patients or participants themselves) outside the research group so cannot be used to identify individuals. Yes I understand that all clinical trials and any other prospective interventional studies must be registered with an ICMJE-approved registry, such as ClinicalTrials.gov. I confirm that any such study reported in the manuscript has been registered and the trial registration ID is provided (note: if posting a prospective study registered retrospectively, please provide a statement in the trial ID field explaining why the study was not registered in advance). Yes I have followed all appropriate research reporting guidelines, such as any relevant EQUATOR Network research reporting checklist(s) and other pertinent material, if applicable. Yes Footnotes Added exact data collection dates in Methods Data Availability The de-identified study transcripts are available for selective sharing, subject to review of individual data requests, the use of secure computer platforms, formal use agreements, and compliance with the institutional human research ethics policies. Data use is limited to research purposes, on secure computer servers. The principal investigator (VJM) is the contact person for requests to share data. Raw audio-recordings are not available for sharing. https://osf.io/kbfz9/overview?view_only=812bb52be753456bb059d75e08e5922b