“I have failed to separate my HIV from this pain”: the challenge of managing chronic pain among people with HIV

ABSTRACT

Pain is a highly prevalent and burdensome symptom among people with HIV (PWH). This study aims to identify how the experience of living with HIV and chronic pain influences pain beliefs, health-seeking and pain management. Thirty-nine purposively sampled PWH with chronic pain (sample characteristics = 61% women, 79% Black, Asian and minority ethnic groups, 18% men who have sex with men, 45–54 median age category) participated in focus groups in London. Focus groups were co-facilitated with community members. Transcripts wereanalysed using a thematic approach. Findings revealed that HIV stigma, fractured care pathways, and general practitioners’ lack of HIV training are barriers to supported pain management. Unaddressed pain results in poorer mental health and reduced quality of life, which has important clinical implications for HIV treatment adherence. Creating HIV-specific pain resources, activating social networks, and pain self-management techniques are potential solutions. Person-centred assessment and HIV training is needed to help clinicians identify PWH with chronic pain. Clear guidelines need to be developed to identify which health service providers are responsible for chronic pain management in PWH. This study generated a refined version of the Fear Avoidance Model that introduces a dimension of HIV-specific behaviours that impact PWHs seeking chronic pain management.

KEYWORDS:

• HIV
• chronic pain
• pain behaviour
• Fear Avoidance Model
• HIV stigma
• health seeking behaviour

Acknowledgements

We wish to acknowledge funding for this study from the NIHR Programmed Development Grant. We are grateful to HIV i-base and UK-Cab for their expert community input and assistance. We would specifically like to thank the African Advocacy Foundation and George House Trust for promoting the study and providing community venues.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

This study/project is funded by the National Institute for Health Research (NIHR) [Programme Development Grant, PRISM: Pain Relief Intervention using Self-Management RP-DG-0517-10004]. The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.