Charlotte Kenten

What are effective approaches to increasing rates of organ donor registration among ethnic minority populations: a systematic review

Objectives To identify effective interventions to increase organ donor registration and improve knowledge about organ donation among ethnic minorities in North America and the UK. Design Systematic review. Data Sources MEDLINE, EMBASE, PsycINFO, CINAHL and Cochrane Central searched up to November 2012, together with four trials databases and the grey literature. Review methods A systematic search followed by assessment of eligibility and quality. An interpretive and thematic approach to synthesis was undertaken. This examined the nature and delivery of interventions in relation to a range of outcomes: verified registration, changing knowledge and a measured shift towards greater readiness. Results 18 studies were included in the review, comprising educational and mass media interventions. Mass media interventions alone reported no significant change in the intention or willingness to register. Educational interventions either alone or combined with mass media approaches were more effective in increasing registration rates, with a strong interpersonal component and an immediate opportunity to register identified as important characteristics in successful change. Conclusions Effective interventions need to be matched to the populations’ stage of readiness to register. Measured outcomes should include registration and shifts along the pathway towards this behavioural outcome.

A study of patient expectations in a Norfolk general practice.

Objective  To use semi‐structured interviews to ascertain patterns in patients’ expectations of health care and the extent to which these expectations were met or not.

‘Nudging’ registration as an organ donor: Implications of changes in choice contexts for socio-cultural groups

Thaler and Sunstein’s behavioural-economics theory of ‘Nudge’ aims to achieve beneficial outcomes for individuals and the society through designing the contexts in which choices are made rather than relying on traditional policy levers of restrictions, penalties and education. This article examines Nudge strategies to increase registration as a deceased organ donor among minority ethnic groups based on 22 focus groups that were held with Black and South Asian minority ethnic groups in London, UK. The article identifies ways in which minority ethnic groups’ habitus appears to limit awareness and knowledge of the system of organ donation and shapes attitudes to registration, with the varying influence of faith/culture and trust in the system reflecting differences in prior contexts and experience. This questions a key requirement of Nudge in terms of its libertarian dimension and suggests that focusing on the immediate choice context and neglecting individuals’ prior dispositions may not achieve desired outcomes for socially heterogeneous populations.

‘Having a different conversation around death’: diverse hospital chaplains' views on end-of-life care

Objectives Hospital chaplaincy in the UKs National Health Service (NHS) is an allied profession that is emerging from its origins as an aspect of Anglican clerical organisation. This paper describes the perceptions and practices of hospital chaplains around end of life care and organ donation. Design Qualitative study involving 19 semi-structured exploratory interviews with hospital chaplains in five NHS Hospital Trusts across two regions in the UK. Results Chaplains provided generic support for the family around death and in relation to end of life conversations. While chaplains were supportive of efforts to increase awareness of issues around deceased donation they held a range of views on organ donation and had limited knowledge of hospital processes and practices. Conclusions There is scope for greater training and involvement of hospital chaplains in hospital work on organ donation, and in developing new forms of community engagement to promote awareness and debate.

Qualitative study to understand the barriers to recruiting young people with cancer to BRIGHTLIGHT: a national cohort study in England

Objectives BRIGHTLIGHT is a national evaluation of cancer services for teenagers and young adults in England. Following challenges with recruitment, our aim was to understand more fully healthcare professionals’ perspectives of the challenges of recruiting young people to a low-risk observational study, and to provide guidance for future recruitment processes. Design Qualitative. Setting National Health Service (NHS) hospitals in England. Methods Semistructured telephone interviews with a convenience sample of 23 healthcare professionals. Participants included principal investigators/other staff recruiting into the BRIGHTLIGHT study. Data were analysed using framework analysis. Results The emergent themes were linked to levels of research organisational management, described using the levels of social network analysis: micro-level (the individual; in this case the target population to be recruited—young people with cancer); meso-level (the organisation; refers to place of recruitment and people responsible for recruitment); and macro-level (the large-scale or global structure; refers to the wider research function of the NHS and associated policies). Study-related issues occurred across all three levels, which were influenced by the context of the study. At the meso-level, professionals’ perceptions of young people and communication between professionals generated age/cancer type silos, resulting in recruitment of either children or adults, but not both by the same team, and only in the cancer type the recruiting professional was aligned to. At the macro-level the main barrier was discordant configuration of a research service with a clinical service. Conclusions This study has identified significant barriers to recruitment mainly at the meso-level and macro-level, which are more challenging for research teams to influence. We suggest that interconnected whole-system changes are required to facilitate the success of interventions designed to improve recruitment. Interventions targeted at study design/management and the micro-level only may be less successful. We offer solutions to be considered by those involved at all levels of research for this population.