"There are several different castes, you know?" : South Asian tutors' experiences of delivering a self-management programme to Punjabi Sikhs

Structured, group-based, psycho-educational self-management interventions, such as the Chronic Disease Self-Management Programme (CDSMP), are designed to help people living with a long-term condition to better manage their daily lives. However, in the UK, the uptake of these interventions among South Asian people is low. Internationally, cultural and structural adaptations of CDSMPs for members of Black and Minority Ethnic (BME) communities show encouraging outcomes. However, scant attention has been paid to the experiences of tutors delivering CDSMPs to these populations and the insight that they could contribute is largely unrecognised. By examining the experiences and understandings of these tutors, more refined cultural and structural modifications may be identified. The aim of this study was, from the perspectives of South Asian tutors, to describe their experiences of delivering CDSMPs that had included South Asian attendees. Richly informative interview data were analysed using Interpretative Phenomenological Analysis. Findings revealed substantial barriers to South Asian people attending, engaging and understanding elements of the intervention. We provide experiential examples to support tutors’ arguments for highly tailored courses, targeted at specific sub-groups of particular communities, and offer insight into practical steps to achieve this. Attendance barriers included lack of awareness about the intervention, and the social influence of the highly refined Sikh caste system, whilst comprehension barriers related to the language of the course manual, medical terminology and concepts. Tutors’ identified pragmatic facilitators to South Asian people’s participation in, and understanding of, the intervention. These included having single-language and single-religion courses, pictorial content in the course manual, and culturally competent recruitment strategies. Further research with South Asian SMP attendees may reveal additional insights into South Asian people’s attendance and performance of self-management behaviours. Policy-makers, providers and commissioners should work with BME communities to adapt SMPs, in order to improve access and understanding, and reduce health inequalities.