Being a child with intellectual disabilities in hospital: The need for an individualised approach to care.

BACKGROUND: There is limited qualitative research focussed specifically on what it is like for children and young people with intellectual disabilities coming into hospital, with much of the evidence-base being about those with Autism Spectrum Condition or adults with intellectual disabilities. AIM: To share rich detail of the emotional and physical impact on children and young people with intellectual disabilities of attending hospital, from their own and their parent's perspective. METHODS: Talking Mats interviews, sticker survey and photography with children and young people with intellectual disabilities, and in-depth interviews, hospital diaries and photography with their parents. RESULTS AND CONCLUSIONS: The multiple and compounding layers of complexity surrounding hospital care of children and young people with intellectual disabilities resulted in challenges associated with loss of familiarity and routine, undergoing procedures, managing sensory overload, managing pain and having a lack of safety awareness. An individualised approach to their care is needed.

Empowering Better End-of-Life Dementia Care (EMBED-Care): A mixed methods protocol to achieve integrated person-centred care across settings.

OBJECTIVES: Globally, the number of people with dementia who have palliative care needs will increase fourfold over the next 40 years. The Empowering Better End-of-Life Dementia Care (EMBED-Care) Programme aims to deliver a step change in care through a large sequential study, spanning multiple work streams. METHODS: We will use mixed methods across settings where people with dementia live and die: their own homes, care homes, and hospitals. Beginning with policy syntheses and reviews of interventions, we will develop a conceptual framework and underpinning theory of change. We will use linked data sets to explore current service use, care transitions, and inequalities and predict future need for end-of-life dementia care. Longitudinal cohort studies of people with dementia (including young onset and prion dementias) and their carers will describe care transitions, quality of life, symptoms, formal and informal care provision, and costs. Data will be synthesised, underpinned by the Knowledge-to-Action Implementation Framework, to design a novel complex intervention to support assessment, decision making, and communication between patients, carers, and inter-professional teams. This will be feasibility and pilot tested in UK settings. Patient and public involvement and engagement, innovative work with artists, policymakers, and third sector organisations are embedded to drive impact. We will build research capacity and develop an international network for excellence in dementia palliative care. CONCLUSIONS: EMBED-Care will help us understand current and future need, develop novel cost-effective care innovations, build research capacity, and promote international collaborations in research and practice to ensure people live and die well with dementia.

Learning disability nurse provision in children's hospitals: hospital staff perceptions of whether it makes a difference.

BACKGROUND: In response to multiple United Kingdom investigations and inquiries into the care of adults with learning disabilities, Mencap produced the Getting it Right Charter which campaigned for the appointment of a Learning Disability Liaison Nurse in every hospital. More recent best practice guidelines from the Care Quality Commission included the need for all children's units to have access to a senior learning disability nurse who can support staff and help them manage difficult situations. However, little evidence exists of the extent of learning disability nurse provision in children's hospitals or the nature and impact of this role. Here we report selected findings from a national mixed methods study of hospital care for children and young people with and without learning disabilities in England. The extent of learning disability nurse provision in children's hospitals is described and perceptions of staff working in hospitals with and without such provision is compared. METHODS: Semi-structured interviews were conducted with senior staff across 15 children's hospitals and an anonymous survey was sent to clinical and non-clinical staff with patient (children and young people) contact within these hospitals. The survey focused on six different elements of care for those with and without learning disability, with additional questions concerning identifying and tracking those with learning disabilities and two open-ended questions. RESULTS: Forty-eight senior staff took part in interviews, which included a subset of nine nurses and one allied health professional employed in a dedicted learning disability nurse role, or similar. Surveys were completed by 1681, of whom 752 worked in a hospital with dedicated learning disability nurse provision. We found evidence of limited and varied learning disability nurse provision which was valued by hospital staff and shown to positively impact their perceptions of being capable to care for children and young people with learning disabilities, but not shown to increase staff perceptions of capacity or confidence, or how children and young people are valued within the hospital, their safety or access to appointments. CONCLUSION: Further consideration must be given to how learning disability nurse roles within children's hospitals are best operationalised in practice to have the greatest impact on staff and families, as well as how we monitor and evaluate them to ensure they are being utilised effectively and efficiently. TRIAL REGISTRATION: The study has been registered on the NIHR CRN portfolio 20,461 (Phase 1), 31,336 (Phases 2-4).

To flag or not to flag: Identification of children and young people with learning disabilities in English hospitals.

BACKGROUND: Children 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. RESULTS: No 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. DISCUSSION: Without an integrated systematic way across the NHS to identify children with learning disabilities, their individual needs will not be identified.

Mapping staff perspectives towards the delivery of hospital care for children and young people with and without learning disabilities in England: a mixed methods national study.

BACKGROUND: Children 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. METHODS: Individual 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. RESULTS: The 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. CONCLUSION: Findings 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 REGISTRATION: The study has been registered on the NIHR CRN portfolio 20461 (Phase 1), 31336 (Phases 2-4).

Salt. UK consumers' perceptions and consumption patterns.

This study investigated UK consumers' perceptions, knowledge and understanding of the salt they consume in their diet and the significance of this for their health. Ten focus groups were conducted in two UK cities (Norwich and London) with a total of 72 participants. Most participants were unaware of the advised salt guidelines (6g per day), or what this equated to within their diet, mainly because they were unclear about how much salt they consumed, given that much is 'hidden' in pre-prepared foods. However, participants were aware of the link between high salt intake and certain negative health associations, though they were unsure about the precise connection. As such, consumption practices were largely driven by habit and lifestyle choices, rather than health considerations. The paper concludes by suggesting that further salt awareness campaigns are needed and that these should be made more relevant to consumers by addressing specific knowledge deficits (such as the presence of 'hidden' salt), although given the intractable nature of human behaviour, more direct efforts to lower salt content (e.g. through manufacturing changes) might be required.

Attitudes to deceased organ donation and registration as a donor among minority ethnic groups in North America and the U.K.: a synthesis of quantitative and qualitative research.

OBJECTIVES: A systematic review and synthesis of quantitative and qualitative research were undertaken to examine attitudes to deceased donation and registration as an organ donor among ethnic minorities in the U.K. and North America. DESIGN: A systematic search and assessments of relevance and quality were conducted. Parallel syntheses were then undertaken of 14 quantitative and 12 qualitative papers followed by their integration. The synthesis was organised around five barriers that emerged as key issues: (1) knowledge regarding deceased donation and registration as a donor; (2) discussion of donation/registration with family members; (3) faith and cultural beliefs; (4) bodily concerns including disfigurement and intactness; and (5) trust in doctors and the health care system. RESULTS: In all countries, knowledge of organ donation and registration remained low despite public campaigns, with African-Americans and Black African and Black Caribbean populations in the U.K. often regarding organ donation as a 'white' issue. Each of the four attitudinal barriers was also more prevalent among ethnic minorities compared with the majority population. However, the significance of trust and uncertainties regarding religion/faith differed between groups, reflecting salient aspects of ethnic identity and experiences. Differences were also identified within ethnic groups associated with age and generation, although respect for the views of elders often influenced younger peoples' willingness to donate. CONCLUSION: 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.

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

OBJECTIVES: Hospital chaplaincy in the UK's 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.

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. BACKGROUND: In health policy it is important to evaluate health services from varying perspectives including consumers'. One concept of emerging importance in this regard is that of patient expectations. Whether expectations are met or not have been found to be related to general patient satisfaction with treatment and treatment compliance. However, there is conceptual and methodological uncertainty and little informing empirical work regarding what is an 'expectation' and how it should be measured. DESIGN: A qualitative study using semi-structured interviews to elicit 20 GP patients' expectations prior to their consultation. A post consultation interview gauged the extent to which these expectations had been met. SETTING AND PARTICIPANT: Twenty patients of a GP practice in Norfolk (UK). RESULTS: Results suggest several different expectations, concerned with the doctor-patient interaction, the specific processes of the consultation, outcomes, and issues to do with time and space. CONCLUSIONS: This research has used an innovative exploratory approach to address the expectations of GP patients and has implications for how doctors ought to manage their consultations. These results will be used to inform the development of a quantitative expectations questionnaire so as to develop a validated measure of expectations. Such an instrument has great potential to aid in health care research and practice.

Understanding care when cure is not likely for young adults who face cancer: a realist analysis of data from patients, families and healthcare professionals.

OBJECTIVES: To understand the experiences of young adults with cancer for whom cure is not likely, in particular what may be specific for people aged 16-40 years and how this might affect care. DESIGN: We used data from multiple sources (semi-structured interviews with people with cancer, nominated family members and healthcare professionals, and workshops) informed by a preliminary programme theory: realist analysis of data within these themes enabled revision of our theory. A realist logic of analysis explored contexts and mechanisms affecting outcomes of care. SETTING: Three cancer centres and associated palliative care services across England. PARTICIPANTS: We aimed for a purposive sample of 45 people with cancer from two groups: those aged 16-24 years for whom there may be specialist cancer centres and those 16-40 years cared for through general adult services; each could nominate for interview one family member and one healthcare professional. We interviewed three people aged 16-24 years and 30 people 25-40 years diagnosed with cancer (carcinomas; blood cancers; sarcoma; central nervous system tumours) with a clinician-estimated prognosis of <12 months along with nominated family carers and healthcare professionals. 19 bereaved family members and 47 healthcare professionals participated in workshops. RESULTS: Data were available from 69 interviews (33 people with cancer, 14 family carers, 22 healthcare professionals) and six workshops. Qualitative analysis revealed seven key themes: loss of control; maintenance of normal life; continuity of care; support for professionals; support for families; importance of language chosen by professionals; and financial concerns. CONCLUSIONS: Current care towards end of life for young adults with cancer and their families does not meet needs and expectations. We identified challenges specific to those aged 16-40 years. The burden that care delivery imposes on healthcare professionals must be recognised. These findings can inform recommendations for measures to be incorporated into services.

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.

Experiences and Preferences for End-of-Life Care for Young Adults with Cancer and Their Informal Carers: A Narrative Synthesis.

To review the qualitative literature on experiences of and preferences for end-of-life care of people with cancer aged 16-40 years (young adults) and their informal carers. A systematic review using narrative synthesis of qualitative studies using the 2006 UK Economic and Social Research Council research methods program guidance. Seven electronic bibliographic databases, two clinical trials databases, and three relevant theses databases were searched from January 2004 to October 2015. Eighteen articles were included from twelve countries. The selected studies included at least 5% of their patient sample within the age range 16-40 years. The studies were heterogeneous in their aims, focus, and sample, but described different aspects of end-of-life care for people with cancer. Positive experiences included facilitating adaptive coping and receiving palliative home care, while negative experiences were loss of "self" and nonfacilitative services and environment. Preferences included a family-centered approach to care, honest conversations about end of life, and facilitating normality. There is little evidence focused on the end-of-life needs of young adults. Analysis of reports including some young adults does not explore experience or preferences by age; therefore, it is difficult to identify age-specific issues clearly. From this review, we suggest that supportive interventions and education are needed to facilitate open and honest communication at an appropriate level with young people. Future research should focus on age-specific evidence about the end-of-life experiences and preferences for young adults with cancer and their informal carers.

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.