Title: Increasing the acceptability and rates of organ donation among ethnic groups
Funder: Department of Health (England)

Abstract: AIM and OBJECTIVES: Aim: To increase the acceptability and rates of deceased organ donation among African-Caribbean and South Asian ethnic minorities (from Indian sub-continent), through both an intervention to enhance health professionals' confidence and cultural competence in communicating with ethnic minority families of a potential organ donor and collecting information to support public awareness campaigns. Objectives:1) To identify beliefs underlying negative attitudes to organ donation among African-Caribbean and South Asian ethnic groups; and 2) To investigate health professionals' perceptions and practices and African-Caribbean and South Asian families experiences of communication with health professionals. These data will be used to: 3) Develop and pilot a complex intervention to enhance health professionals communication with African-Caribbean and South Asian families with a potential donor; and to 4) Conduct a cluster randomised controlled trial to evaluate the outcome of the health professionals' intervention on donation rates. BACKGROUND: African-Caribbean and South Asian ethnic minorities (6.2% UK pop.) have high needs for transplantation (particularly kidney) and may have a rarer blood group and different tissue type from the majority of donors. However they comprise only 2% of deceased donors. The major groups of African-Caribbean and South Asian ethnic minorities therefore spend longer periods on the waiting list (23% of waiting list patients). The Department of Health's Organ Donation Taskforce (ODT) recommends much more work to identify the reasons for non-donation, and 'most importantly of understanding how best to encourage consent to donation from all sections of the community, particularly from the BME population.' (4: 4.48). RESEARCH PLANS: The programme involves 4 related studies. Following the Medical Research Council's framework for complex interventions we will conduct initial community studies with ethnic minorities to inform the design of an intervention for health professionals. Community based work will involve focus groups with different age/gender groups within the Indian, Pakistani, and Bangladeshi communities and with a range of peoples of Caribbean and Black African origin. We will then conduct a study of ethnic minority families' perceptions and experiences of the donation discussion. These initial studies, together with observational work in ICUs and discussions and interviews with health professionals, will lead to the development and piloting of an intervention based on the Theory of Planned Behaviour (TPB). The aim of the intervention is to enhance health professionals' knowledge, motivation, confidence and ability to communicate sensitively with ethnic minority families of a potential donor and elicit and respond to their concerns. We will combine this with promoting positive organisational values to support the intervention. This complex intervention will undergo definitive evaluation in a multi-centre trial of ICUs, to determine its effectiveness in increasing family consent rates and the supply of organs. RESEARCH TEAM: A multi-disciplinary research team with publications on organ donation among ethnic groups and substantial prior experience of patient based research, including studies of bereaved families. The PI is on the SDO Commissioning panel for patient-centred care and the 'Cultural' Working group of the Organ Donation Taskforce. The team also includes clinicians and the Director of UK Transplant. RESEARCH ENVIRONMENT The host Division of Health and Social Care Research at KCL provides a strong focus for health and social care researchers, drawing its membership from Schools of Medicine, Nursing & Midwifery and Social Science & Public Policy and including the NIHR National Nursing Research Unit. There is research synergy between the proposed programme and several centres at KCL and locally we have strong links with NHS Trusts and the South Thames Transplant Co-ordination Service. ANTICIPATED OUTCOMES, OUTPUTS AND IMPACT: The main outcome is a tested, acceptable and cost-effective intervention that can be rolled out nationally as a core module in ethnic competence and organ donation for critical care nurses and doctors. This will benefit families with a potential donor through improved communication and support that addresses their worries and fears. It will also benefit ethnic minority patients through increased family consent and greater availability of well matched organs. PUBLIC INVOLVEMENT: We will recruit an ethnic minority User Group and follow 'INVOLVE's principles of good practice and our Divisions' own specialist expertise to ensure successful user involvement. The group will meet at key stages of the research, with input involving both collaboration and consultation.


Research activity codes: 7.1 INDIVIDUAL CARE NEEDS;7.3 MANAGEMENT AND DECISION MAKING;8.3 POLICY, ETHICS AND RESEARCH GOVERNANCE
Health categories: GENERIC HEALTH RELEVANCE