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There is a need for a more nuanced understanding of ethnicity and of variations in attitudes associated with country of origin, age/generation, socio-economic status and area of residence, to inform public campaigns and promote sensitive discussions with bereaved ethnic minority families. The traditional focus on knowledge and attitudes also requires to be complemented by a greater emphasis on organisational and service-related barriers and changes required to enhance ethnic minorities' access to registration as a donor and consent to deceased donation.

BackgroundChildren and young people (CYP) with learning disabilities (LD) are a vulnerable population with increased risk of abuse and accidental injury and whose parents have reported concerns about the quality, safety and accessibility of their hospital care. The Care Quality Commission’s (CQC) view of best practice for this group of patients includes: access to senior LD nurse provision; a clearly visible flagging system for identifying them; the use of hospital passports; and defined communication strategies (Glasper, Comp Child Adolesc Nurs 40:63-67, 2017). What remains unclear is whether these recommendations are being applied and if so, what difference they are making. Furthermore, what we do not know is whether parental concerns of CYP with LD differ from parents of other children with long-term conditions. The aims of this study were to 1) describe the organisational context for healthcare delivery to CYP with LD and their families and 2) compare staff perceptions of their ability to identify the needs of CYP with and without LD and their families and provide high quality care to effectively meet these needs.MethodsIndividual interviews (n = 65) and anonymised online survey (n = 2261) were conducted with hospital staff working with CYP in 15 children’s and 9 non-children’s hospitals in England. The majority of interviews were conducted over the telephone and recorded and transcribed verbatim. Health Research Authority was obtained and verbal or written consent for data collection was obtained from all interview participants.ResultsThe nature and extent of organisational policies, systems and practices in place within hospitals to support the care of CYP with LD differs across England and some uncertainty exists within and across hospitals as to what is currently available and accessed. Staff perceived that those with LD were included less, valued less, and less safe than CYP without LD. They also reported having less confidence, capability and capacity to meet the needs of this population compared to those without LD.ConclusionFindings indicate inequality with regards the provision of high quality hospital care to children and young people with LD that meets their needs.There is a pressing need to understand the impact this has on them and their families.Trial registrationThe study has been registered on the NIHR CRN portfolio 20461 (Phase 1), 31336 (Phases 2-4).Electronic supplementary materialThe online version of this article (10.1186/s12913-018-2970-8) contains supplementary material, which is available to authorized users.

ObjectivesTo identify effective interventions to increase organ donor registration and improve knowledge about organ donation among ethnic minorities in North America and the UK.DesignSystematic review.Data SourcesMEDLINE, EMBASE, PsycINFO, CINAHL and Cochrane Central searched up to November 2012, together with four trials databases and the grey literature.Review methodsA 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.Results18 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.ConclusionsEffective 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.

BackgroundChildren and young people with learning disabilities experience poor health outcomes and lengthier hospital admissions than those without learning disabilities. No consistently applied, systematic approach exists across the NHS to identify and record this population. This paper describes practices in English hospitals to identify children and young people with learning disabilities.Method Interviews: 65 NHS staff. Questionnaire: 2,261 NHS staff. Conducted across 24 NHS hospitals in England.ResultsNo standardized approach exists to identify children or young people with a learning disability or for this information to be consistently recorded, communicated to relevant parties within a hospital, Trust or across NHS services. Staff reported a reliance on parents to inform them about their child's needs but concerns about “flagging” patients might be a significant barrier.DiscussionWithout an integrated systematic way across the NHS to identify children with learning disabilities, their individual needs will not be identified.