Increasing the acceptability and rates of organ donation among minority ethnic groups: a programme of observational and evaluative research on Donation, Transplantation and Ethnicity (DonaTE)

Background: Black, Asian and minority ethnic (BAME) groups have a high need for organ transplantation but deceased donation is low. This restricts the availability of well-matched organs and results in relatively long waiting times for transplantation, with increased mortality risks. Objective: To identify barriers to organ donor registration and family consent among the BAME population, and to develop and evaluate a training intervention to enhance communication with ethnic minority families and identify impacts on family consent. Methods: Three-phase programme comprising (1) community-based research involving two systematic reviews examining attitudes and barriers to organ donation and effective interventions followed by 22 focus groups with minority ethnic groups; (2) hospital-based research examining staff practices and influences on family consent through ethics discussion groups (EDGs) with staff, a study on intensive care units (ICUs) and interviews with bereaved ethnic minority families; and (3) development and evaluation of a training package to enhance cultural competence among ICU staff. Setting: Community focus group study in eight London boroughs with high prevalence of ethnic minority populations. Hospital studies at five NHS hospital trusts (three in London and two in Midlands). Participants: (1) Community studies: 228 focus group participants; (2) hospital studies: 35 nurses, 28 clinicians, 19 hospital chaplains, 25 members of local Organ Donation Committees, 17 bereaved family members; and (3) evaluation: 66 health professionals. Data sources: Focus groups with community residents, systematic reviews, qualitative interviews and observation in ICUs, EDGs with ICU staff, bereaved family interviews and questionnaires for trial evaluation. Review methods: Systematic review and narrative synthesis. Results: (1) Community studies: Organ Donor Register – different ethnic/faith and age groups were at varying points on the ‘pathway’ to organ donor registration, with large numbers lacking knowledge and remaining at a pre-contemplation stage. Key attitudinal barriers were uncertainties regarding religious permissibility, bodily concerns, lack of trust in health professionals and little priority given to registration, with the varying significance of these factors varying by ethnicity/faith and age. National campaigns focusing on ethnic minorities have had limited impact, whereas characteristics of effective educational interventions are being conducted in a familiar environment; addressing the groups’ particular concerns; delivery by trained members of the lay community; and providing immediate access to registration. Interventions are also required to target those at specific stages of the donation pathway. (2) Hospital studies: family consent to donation – many ICU staff, especially junior nurses, described a lack of confidence in communication and supporting ethnic minority families, often reflecting differences in emotional expression, faith and cultural beliefs, and language difficulties. The continuing high proportion of family donation discussions that take place without the collaboration of a specialist nurse for organ donation (SNOD) reflected consultants’ views of their own role in family consent to donation, a lack of trust in SNODs and uncertainties surrounding controlled donations after circulatory (or cardiac) death. Hospital chaplains differed in their involvement in ICUs, reflecting their availability/employment status, personal interests and the practices of ICU staff. (3) Evaluation: professional development package – a digital versatile disk-based training package was developed to promote confidence and skills in cross-cultural communication (available at: www.youtube.com/watch?v=ueaR6XYkeVM&feature=youtu.be). Initial evaluation produced positive feedback and significant affirmative attitudinal change but no significant difference in consent rate over the short follow-up period with requirements for longer-term evaluation. Limitations: Participants in the focus group study were mainly first-generation migrants of manual socioeconomic groups. It was not permitted to identify non-consenting families for interview with data regarding the consent process were therefore limited to consenting families. Conclusions: The research presents guidance for the effective targeting of donation campaigns focusing on minority ethnic groups and provides the first training package in cultural competence in the NHS. Future work: Greater evaluation is required of community interventions in the UK to enhance knowledge of effective practice and analysis of the experiences of non-consenting ethnic minority families. Funding: The National Institute for Health Research Programme Grants for Applied Research programme

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

Some properties of cocoa swollen-shoot virus

SUMMARY: Partially purified preparations of the Kofi Pare isolate of cocoa swollen-shoot virus (CSSV) were usually inactivated after 10 min. at 50°, but not after 10 min. at 45°. Infectivity of freshly made preparations was greatly lessened by diluting 1/10, and lost at 1/100. The infectivity of preparations increased after storage for 24 hr; after 96 hr infectivity was retained at 0--4° but soon lost at 25°. The virus survived freezing in vitro and, with some loss of infectivity, freezing in leaves and storage in leaves dried over aluminium oxide. Infective material was precipitated from dilute extracts by half saturation with ammonium sulphate at 25°; it appeared to be equally stable over the range pH 6 to pH 8. Preparations of the symptomatologically distinct Kofi Pare, Mampong, Dawa, Nsaba and Bosomuoso isolates all contained similar rod-shaped particles of size about 121 x 28 m/μ

Further studies on cocoa yellow mosaic virus

Cocoa yellow mosaic virus from Sierra Leone is readily transmitted by sap to many woody and herbaceous dicotyledonous plants. It is serologically related to wild cucumber mosaic virus and to turnip yellow mosaic virus, and has similar chemical and physical properties. It is stable when frozen or lyophilized, inactivated when kept for 10 min. at 65°, and is precipitated without loss of infectivity in a half-saturated ammonium sulphate solution. The particles appear to be 25 Mμ across when mounted in neutral phosphotungstate, and 29 Mμ when shadowed. All preparations contained infective nucleoprotein particles which sedimented at 108 S, and non-infective protein shells which sedimented at 49 S

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

A multidimensional view? Evaluating the different and combined contributions of diaries and interviews in an exploration of asexual identities and intimacies

This article evaluates the relative contributions of diaries and interviews in multiple methods qualitative research exploring asexual identities and intimacies. Differentiated by three core differences: reflective time-frame (the day just had/lifetime), context (alone/with researcher) and mode (written/verbal), these methods had the potential to generate a multidimensional view of our topics. Using five cases in which data from both interviews and diaries were collected, this article explores how the intermeshed issues of identity and intimacy were constructed in each method, as well as reflecting on what was gained by their combination. Our analysis leads us to conclude that multiple methods do not always produce a fuller or a more rounded picture of individual participants’ lives. Nevertheless, the decision to collect data using different strategies did increase our chances of finding a method that suited individual participants, whether in style or focus