‘Grandchildren are like my medicine’: Practices and expectations of South Asian individuals and their families for digitally enabled and carer supported pain self-management in the United Kingdom

Background
Chronic pain affects South Asians disproportionality in the United Kingdom. Self-management is an essential part of living with chronic pain, with families playing an important role in the process. This study explored chronic pain self-management practices of South Asian individuals and their families for pain self-management and examined the potential for digitally enabled and carer supported pain self-management.
Methods
This narrative study involved interviewing families, including individuals living with chronic pain and their family members. South Asian adults living with chronic pain and receiving support from family members were considered eligible. Semi-structured interviews were conducted with families in Punjabi, Urdu and English. Interviews were audio-recorded and transcribed verbatim. Anonymised transcripts were coded, analysed thematically and iteratively interpreted.
Findings
Ten individuals and 25 family members participated in 10 family interviews. We developed three themes capturing how chronic pain is experienced and managed within social and cultural contexts. Firstly, we found that self-management decisions were largely family-led and shaped by experience with healthcare system, treatment expectations and online information. Secondly, variations in self-management strategies and treatment expectations (e.g., pain reduction vs function improvement) were influenced by socio-cultural and family dynamics, particularly the degree of reliance within families. Thirdly, dissonance between clinical advice and families’ social realities perpetuated distrust in healthcare system. Participants perceived treatments to be pharmacological in nature and found advice related to non-pharmacological aspects (such as diet and physical activity) impractical and culturally irrelevant. Digital pain self-reporting tools and simple pain visualisations were seen as valuable for supporting pain self-learning and improving self-management, particularly by enabling proxy access and shared learning from others’ experiences of pain management.
Conclusion
Pain self-management practices are diverse and shaped by social, technological, cultural, and family contexts. Family dynamics and treatment perception guided people’s treatment expectations, which are primarily focused on pharmacological interventions.