Increasing organ donation in the North West South Asian community through targeted education

Organ donation continues to be low among ethnic minorities especially within the South Asian community, with a disproportionate number of South Asian people waiting for transplants because suitable matches are often found between people of same ethnic group. This thesis seeks to explore, identify and overcome the barriers to increase the number of South Asian organ donor registrants (ODR’s) and actual donors in the North West of England using and measuring the impact of different education approaches. A two phased, sequential explanatory mixed-methods approach was underpinned by health belief model theory. Phase 1: Questionnaire survey (n=907) and in-depth interviews (n=10) to understand South Asian beliefs, barriers and awareness of organ donation. Chi-squared tests and thematic analysis explored the existence of associations between outcomes, demographics and attitudes. Phase 2: Implementation of education approaches: (1) Education and training of Specialist Nurse for Organ Donation (SNOD) to develop skills/confidence to approach South Asian families for cadaver organ donation, measured by 12-month before/after audit of cadaver organs. (2) Education from the General Practioner’s (GP’s). (3) Peer education at South Asian community events, impact measured by number of new organ ODR’s. Out of 907 South Asian people sampled, 55% did not know about organ donation, they lacked knowledge, mistrusted health professionals, and were misinformed regarding religious objections, despite 88% having higher education. Over 24 months, 2874 South Asian new ODR’s were successfully recruited through peer education at 289 community events by a passionate, committed South Asian health professional. Recruitment of ODR within primary care was poor, GPs reluctant and lacking confidence to discuss organ donation, due to lack of time and uncertainty of religious issues. Targeted SNOD’s cultural education increased slightly the number of cadaver donors, as their confidence in approaching South Asian families increased. Formal training of SNODs and health professionals (GPs) with respect to culture and religious organ donation was scant and required a national cohesive approach. The research provides a deeper understanding of the reasons for the scarcity of South Asian organ donors gathered from what is currently the largest UK data set of South Asian perspectives. Peer education of the South Asian and collaboration with religious leaders is crucial to overcoming the shortage of organ donors in the future. However, the important and pivotal role played by a South Asian co-ordinator/networker to engage and sustain relationships with key ethnic community leaders cannot be overstated