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Chunhua Chen,* Bryony Beresford* Social Policy Research Unit, University of York, York, UK*These authors contributed equally to this workCorrespondence: Bryony Beresford, Social Policy Research Unit, School for Business and Society, University of York, York, YO10 5ZF, UK, Tel/Fax +44 1904 321960, Email bryony.beresford@york.ac.ukBackground: The challenges of population aging have fostered the adoption of reablement as a core pillar of older people’s care in many developed economies. Aligning with wider literature on the association between “patient” engagement and outcomes, emerging evidence points to the impact user engagement may have on reablement outcomes. To date, existing research on the factors implicated in engagement with reablement is rather limited.Objective: To identify and describe factors which impact user engagement in reablement from the perspectives of reablement staff, staff in interfacing services, service users and family members.Sample and Methods: A total of 78 staff were recruited from five sites across England and Wales. Twelve service users and five family members were recruited from three of these sites. Data were collected via focus groups with staff and interviews with service users and families, and subject to thematic analysis.Results: The data revealed a complex picture of factors potentially impacting user engagement, ranging from user-, family-, and staff-centered factors, the nature of the relationship between staff and users, and aspects of service organization and delivery across referral and intervention pathways. Many are amenable to intervention. As well as offering a more fine-grained understanding of factors reported by previous research, new factors impacting engagement were identified. These included staff morale, equipment provision systems, assessment and reviewing processes, and attention to social reablement needs. Aspects of the wider service context (eg, degree of integration of health and social care) played a role in determining which factors were pertinent.Conclusion: Findings highlight the complexity of factors influencing engagement with reablement, and the need to ensure features of the wider service context (eg delivery models, referral pathways) do not work against securing and sustaining older people’s engagement with reablement.Keywords: older people, patient engagement, reablement services, intermediate care, integrated care

Growing evidence of the association between health professionals' well‐being and patient and organisational outcomes points to the need for effective staff support. This paper reports a brief survey of the UK's children's cancer Principal Treatment Centres (PTCs) regarding staff support systems and practices. A short on‐line questionnaire, administered in 2012–2013, collected information about the availability of staff support interventions which seek to prevent work‐related stress among different members of the multi‐disciplinary team (MDT). It was completed by a member of staff with, where required, assistance from colleagues. All PTCs (n = 19) participated. Debriefs following a patient death was the most frequently reported staff support practice. Support groups were infrequently mentioned. There was wide variability between PTCs, and between professional groups, regarding the number and type of interventions available. Doctors appear to be least likely to have access to support. A few Centres routinely addressed work‐related stress in wider staff management strategies. Two Centres had developed a bespoke intervention. Very few Centres were reported to actively raise awareness of support available from their hospital's Occupational Health department. A minority of PTCs had expert input regarding staff support from clinical psychology/liaison psychiatry. [ABSTRACT FROM AUTHOR]

Deaf children have an increased prevalence of mental health problems compared with hearing children. Generic Child And Adolescent Mental Health Services do not have the skills or expertise to meet the mental health needs of this group of children. Three teams in England provide specialist mental health services for deaf children. This research explored children's experiences of using these services. Twenty-four deaf children participated in the study. Overall children valued and benefited from the service. The expertise of the staff and the presence of deaf clinicians were key to these positive experiences. [ABSTRACT FROM AUTHOR]

Objectives: To describe end of life care in settings where, in the UK, most children die; to explore commonalities and differences within and between settings; and to test whether there are distinct, alternative models of end of life care., Methods: An online survey of UK neonatal units (NNUs), paediatric intensive care units (PICUs) and children/young people's cancer principal treatment centres (PTCs) collected data on aspects of service organisation, delivery and practice relevant to end of life outcomes or experiences (referred to as the core elements of end of life care) across three domains: care of the child, care of the parent and bereavement care., Results: 91 units/centres returned a survey (37% response rate). There was variation within and between settings in terms of whether and how core elements of end of life care were provided. PTCs were more likely than NNUs and PICUs to have palliative care expertise strongly embedded in the multidisciplinary team (MDT), and to have the widest range of clinical and non-clinical professions represented in the MDT. However, bereavement care was more limited. Many settings were limited in the practical and psychosocial-spiritual care and support available to parents., Conclusions: Children at end of life, and families, experience differences in care that evidence indicates matter to them and impact outcomes. Some differences appear to be related to the type of setting. Subsequent stages of this research (the ENHANCE study) will investigate the relative contribution of these core elements of end of life care to child/parent outcomes and experiences., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2024. Re-use permitted under CC BY. Published by BMJ.)

Introduction: Autism is a lifelong neurodevelopmental condition diagnosed on the basis of differences in social communication, interaction and repetitive behaviours, including sensory sensitivities. Autistic individuals without intellectual disabilities often face barriers to positive adult outcomes and are at high risk for poor health, including mental health issues, which could be mitigated by improving well-being. Young people should receive support to increase their well-being during the transition to adulthood, when social and family support often reduces. This is the protocol for a feasibility randomised controlled trial (RCT) of an online peer-group intervention, 'Understanding You, Discovering You' (UYDY). Objectives included assessing recruitment and retention rates, acceptability of procedures, characterising usual care, assessing the acceptability of UYDY and care as usual (CAU) and calculating outcome measure variances for a full trial., Methods and Analysis: This two-arm parallel feasibility RCT includes a nested qualitative evaluation. Seventy participants aged 16-25 years old with a clinical autism diagnosis will be randomised on a 1:1 basis to UYDY or CAU. Exclusion criteria include risk of harm to self or others, receipt of postdiagnostic support in the past 12 months, and literacy levels such that the written session materials are not accessible. UYDY, a 6-week online peer-group intervention, will cover topics such as understanding autism, problem-solving and accessing services, and is facilitated by an autistic person and social care professionals. The main outcomes from the feasibility trial will be collecting data on (1) recruitment and retention rates; (2) the acceptability of randomisation and outcome measurement procedures; (3) CAU accessed by participants; (4) acceptability of the interventions; (5) clinical outcome measure variances (see below). See the Statistical methods section below for how this will be assessed in the current study. Clinical outcomes will be measured at baseline, and 8, 16 and 24 weeks post-randomisation. The primary clinical outcome is well-being, assessed using the Warwick Edinburgh Mental Wellbeing Scale. Secondary clinical outcomes include autism social identification, quality of life, social support and loneliness. Adverse events will be monitored and reported. Carer impact will also be measured. Participants will be recruited from England and Wales via charities and NHS services. Qualitative interviews will be conducted to explore the acceptability of trial participation including randomisation and the interventions., Ethics and Dissemination: Ethical approval has been obtained from the HRA and NHS REC (23/WA/0113). Informed consent will be collected from all participants (see online supplemental material for an example consent form). Results will inform the design of a full RCT and will be disseminated through peer-reviewed journals, conferences, and stakeholder events., Trial Registration Number: ISRCTN10513626., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2024. Re-use permitted under CC BY. Published by BMJ.)

Objective: Using digital systems to support the management and delivery of social care is a priority for UK governments. This study explored progress towards, and experiences of, digitalisation in the homecare sector and providers' views on contributing client data to a national policy/research dataset., Methods: Over 150 UK homecare providers completed an on-line survey (October-December 2022). The survey was hosted on Qualtrics and comprised fixed- and free-text response questions. The recruited sample aligned with the profile of UK homecare providers in terms of use of digital systems, organisation type and size., Results: Almost all respondents (95.5%) were using digital systems, in part or exclusively, to support care delivery. However, many (42.7%) reported a desire to further digitalise or a dissatisfaction with existing systems. Findings highlight the time and work involved in choosing a a software system, with the decision regarded as relatively high risk. Over 50 different software systems were being used across the sample. Most respondents (72.5%) supported the creation of a national dataset on homecare users. However, support and recompense are likely to needed to secure buy-in from what is a predominantly private sector context., Conclusions: Findings suggest a complex and changing situation, with numerous different digital systems being used and the sector at different stages of digitalisation. The high-pressure, low margin context of UK homecare appeared to be exerting an influence on progress towards digitalisation. Evaluations of government strategies to stimulate and support digitalisation in this diverse and predominantly private sector context will be valuable., Competing Interests: The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article., (© The Author(s) 2024.)

Background: Poor psychological well-being among healthcare staff has implications for staff sickness and absence rates, and impacts on the quality, cost and safety of patient care. Although numerous studies have explored the well-being of hospice staff, study findings vary and the evidence has not yet been reviewed and synthesised. Using job demands-resources (JD-R) theory, this review aimed to investigate what factors are associated with the well-being of hospice staff., Methods: We searched MEDLINE, CINAHL and PsycINFO for peer-reviewed quantitative, qualitative or mixed-methods studies focused on understanding what contributes to the well-being of hospice staff who provide care to patients (adults and children). The date of the last search was 11 March 2022. Studies were published from 2000 onwards in the English language and conducted in Organisation for Economic Co-operation and Development countries. Study quality was assessed using the Mixed Methods Appraisal Tool. Data synthesis was conducted using a result-based convergent design, which involved an iterative, thematic approach of collating data into distinct factors and mapping these to the JD-R theory., Results: A total of 4016 unique records were screened by title and abstract, 115 full-text articles were retrieved and reviewed and 27 articles describing 23 studies were included in the review. The majority of the evidence came from studies of staff working with adult patients. Twenty-seven individual factors were identified in the included studies. There is a strong and moderate evidence that 21 of the 27 identified factors can influence hospice staff well-being. These 21 factors can be grouped into three categories: (1) those that are specific to the hospice environment and role, such as the complexity and diversity of the hospice role; (2) those that have been found to be associated with well-being in other similar settings, such as relationships with patients and their families; and (3) those that affect workers regardless of their role and work environment, that is, that are not unique to working in a healthcare role, such as workload and working relationships. There was strong evidence that neither staff demographic characteristics nor education level can influence well-being., Discussion: The factors identified in this review highlight the importance of assessing both positive and negative domains of experience to determine coping interventions. Hospice organisations should aim to offer a wide range of interventions to ensure their staff have access to something that works for them. These should involve continuing or commencing initiatives to protect the factors that make hospices good environments in which to work, as well as recognising that hospice staff are also subject to many of the same factors that affect psychological well-being in all work environments. Only two studies included in the review were set in children's hospices, suggesting that more research is needed in these settings., Prospero Registration Number: CRD42019136721 (Deviations from the protocol are noted in Table 8, Supplementary material)., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2023. No commercial re-use. See rights and permissions. Published by BMJ.)

Objectives: Poor psychological well-being among healthcare workers can have numerous negative impacts, but evidence about levels of burnout in children's hospice care staff is limited. This study aimed to determine the prevalence of burnout and to explore the association between staff characteristics and support mechanisms with burnout among children's hospice care staff in the UK., Methods: Two national online surveys collecting data on hospice care staff psychological well-being and hospice organisational characteristics. All children's hospices in the UK were invited.Thirty-one hospices (out of 52) responded to the hospice survey and 583 staff responded to the staff survey. Data collection took place between May and December 2020 and measures included the Copenhagen Burnout Inventory, Work Engagement and the Health and Safety Executive Management Standards Indicator Tool., Results: Burnout prevalence was 11% and mean burnout score was 32.5 (SD: 13.1). Burnout levels were independent of working arrangements (eg, working from home or at the hospice) during the COVID-19 pandemic. Hospices performed well in most management standards, but poorly on the 'Control' domain. The average Work Engagement score for staff was 7.5 (SD: 1.5)., Conclusions: Burnout levels for staff in children's hospices in the UK were lower than in other healthcare settings, with this comparing to 17.3% among palliative care staff generally. Overall, hospices performed well in management standards and there was no indication of urgent action needed. Work Engagement in our sample was higher compared with other National Health Service workers during the COVID-19 pandemic., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2023. No commercial re-use. See rights and permissions. Published by BMJ.)

Objectives: This study assessed the work-related resources and demands experienced by children's hospice staff to help identify staff support systems and organizational practices that offer the most potential to prevent staff burnout and enhance well-being at work., Methods: The relationships between individual and organizational characteristics, work-related resources and demands, and burnout and work engagement outcomes experienced by children's hospice staff were explored using two surveys: the Children's Hospice Staff survey, completed by UK children's hospice staff, and the Children's Hospice Organisation and Management survey, completed by the Heads of Care. We used structural equation modeling to assess the relationships between the variables derived from the survey measures and to test a model underpinned by the Job Demands-Resource (JD-R) theory., Results: There were 583 staff responses from 32 hospices, and 414 participants provided valid data for burnout and work engagement outcome measures. Most participants were females (95.4%), aged 51-65 years old (31.3%), and had more than 15 years of experience in life-limiting conditions (29.7%). The average score for burnout was 32.5 (SD: 13.1), and the average score for work engagement was 7.5 (SD: 1.5). The structural model validity showed good fit. Demands significantly predicted burnout ( b  = 4.65, p  ≤ 0.001), and resources predicted work engagement ( b  = 3.09, p  ≤ 0.001). The interaction between resources and demands only predicted work engagement ( b  = -0.31, p  = 0.115). Burnout did not predict work engagement ( b  = -0.09, p  = 0.194)., Significance of Results: The results partly supported the JD-R model, with a clear association between resources and work engagement, even when the demands were considered. Demands were only directly associated with burnout. The findings also identified a set of the most relevant aspects related to resources and demands, which can be used to assess and improve staff psychological well-being in children's hospices in the UK.

Background: There is a workforce shortage in the children's hospice sector, but there has been little research on the specific challenges of working in this setting and on how these challenges might be alleviated. To identify appropriate interventions to improve staff wellbeing, the drivers of wellbeing in children's hospices need to be known and measured. This paper reports on the development of two measures, one for work-related rewards and one for work-related stressors, for use in children's hospice care teams., Methods: A mixed-methods, four-stage study; the first three phases focused on the development of the scales, and the last stage focused on the validation of the scales. Participants of all stages were children's hospice care team staff members in the UK. Stage 1: survey assessing the relevance and comprehensiveness of the original scale items (N = 60); Stages 2 (focus groups; N = 16) and 3 (cognitive interviews; N = 14) to assess content validity; Stage 4: UK-wide survey (N = 414) to validate the final version of the new, children's hospice-specific scales using Rasch Analysis (RA) and Confirmatory Factor Analysis (CFA)., Results: Due to poor fitting indices shown in the results from the RA, five items (out of 36) were removed from the new rewards scale used in the UK-wide survey and 20 (out of 62) were removed from the new stressors scale. CFA also supported the removal of the items and showed a one-factor structure for the rewards scale and a three-factor structure for the stressors scale were adequate-the sub-scales for the stressors scale related to caring for an ill or dying child ("Child" sub-scale), working with parents and families ("Parent" sub-scale), and stressors related to organisational factors, such as team conflict and workload ("Organisation" sub-scale)., Conclusions: Both of the new scales showed good psychometric properties and can be useful in clinical settings and research to assess the perceived intensity of the work-related rewards and stressors for children's hospice staff., (© 2023. BioMed Central Ltd., part of Springer Nature.)

Community-based participatory research (CBPR) partnerships strive to promote community capacity building and sustainability, yet initiatives often suffer when grants or relationships with academic partners end. To address these concerns, researchers hoping to develop truly sustainable CBPR partnerships should consider factors that promote the development of community capacity and, ultimately, independence. In this first-person account, using perspectives gathered from FAVOR, a Connecticut-based family-led advocacy organization and an academic researcher, we examine the practices and experiences of the members of a CBPR partnership focused on using community voice to inform changes in the state's children's behavioral health system of care. These practices ultimately led to FAVOR developing the necessary skills to assume full ownership of the community data-gathering initiative, ensuring that the initiative would be sustained. Through the perspectives of five FAVOR staff and an academic researcher, we describe the factors that contributed to the organization being able to develop the capacity to independently continue their community data-gathering initiative, including description of the training process and staff members' perspectives on training, autonomy, community value, and lessons learned. We use these stories and experiences to provide recommendations for other partnerships striving to promote capacity building and sustainability through community ownership of the research process., (© 2023 Society for Community Research and Action.)

Background: Provision of and access to paediatric end-of-life care is inequitable, but previous research on this area has focused on perspectives of health professionals in specific settings or children with specific conditions. This qualitative study aimed to explore regional perspectives of the successes, and challenges to the equitable coordination and delivery of end-of-life care for children in the UK. The study provides an overarching perspective on the challenges of delivering and coordinating end-of-life care for children in the UK, and the impact of these on health professionals and organisations. Previous research has not highlighted the successes in the sector, such as the formal and informal coordination of care between different services and sectors., Methods: Semi-structured interviews with Chairs of the regional Palliative Care Networks across the UK. Chairs or co-Chairs (n = 19) of 15/16 Networks were interviewed between October-December 2021. Data were analysed using thematic analysis., Results: Three main themes were identified: one standalone theme ("Communication during end-of-life care"); and two overarching themes ("Getting end-of-life services and staff in the right place", with two themes: "Access to, and staffing of end-of-life care" and "Inconsistent and insufficient funding for end-of-life care services"; and "Linking up healthcare provision", with three sub-themes: "Coordination successes", "Role of the networks", and "Coordination challenges"). Good end-of-life care was facilitated through collaborative and network approaches to service provision, and effective communication with families. The implementation of 24/7 advice lines and the formalisation of joint-working arrangements were highlighted as a way to address the current challenges in the specialism., Conclusions: Findings demonstrate how informal and formal relationships between organisations and individuals, enabled early communication with families, and collaborative working with specialist services. Formalising these could increase knowledge and awareness of end of life care, improve staff confidence, and overall improve professionals' experiences of delivering care, and families' experiences of receiving it. There are considerable positives that come from collaborative working between different organisations and sectors, and care could be improved if these approaches are funded and formalised. There needs to be consistent funding for paediatric palliative care and there is a clear need for education and training to improve staff knowledge and confidence., (© 2023. BioMed Central Ltd., part of Springer Nature.)

Objectives: To systematically gather information on the professional team members, services provided, funding sources and population served for all consultant-led specialised paediatric palliative care (SPPC) teams in the UK., Methods: Two-part online survey., Results: Survey 1: All 17 medical leads from hospital-based or hospice-based SPPC teams responded to the survey (100% response rate).Only six services met the NICE guidance for minimum SPPC team.All services reported providing symptom management, specialist nursing care, end-of-life planning and care, and supporting discharges and transfers to home or hospice for the child's final days-hours. Most services also provided care coordination (n=14), bereavement support (n=13), clinical psychology (n=10) and social work-welfare support (n=9). Thirteen had one or more posts partially or fully funded by a charity.Survey 2: Nine finance leads provided detailed resource/funding information, finding a range of statutory and charity funding sources. Only one of the National Health Service (NHS)-based services fully funded by the NHS., Conclusions: One-third of services met the minimum criteria of professional team as defined by NICE. Most services relied on charity funding to fund part or all of one professional post and only one NHS-based service received all its funding directly from the NHS., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2023. No commercial re-use. See rights and permissions. Published by BMJ.)

Background: Patient experience is a core component of healthcare quality. Patient-reported experience measures (PREMs) are increasingly used to assess this, but there are few paediatric PREMs. This paper reports the first stage of developing two such measures, one for children and young people (0-18 years) (CYP) with a life-threatening or life-shortening condition (LT/LSC), and one for their parents. It comprised parallel scoping reviews of qualitative evidence on the elements of health service delivery and care that matter to, or impact on, CYP (Review 1) and parents (Review 2)., Methods: Medline and PsychINFO (1/1/2010 - 11/8/2020) and CINAHL Complete (1/1/2010 - 4/7/2020) were searched and records identified screened against inclusion criteria. A thematic approach was used to manage and analyse relevant data, informed by existing understandings of patient/family experiences as comprising aspects of staff's attributes, their actions and behaviours, and organisational features. The objective was to identity the data discrete elements of health service delivery and care which matter to, or impact on, CYP or parents which, when organised under higher order conceptual domains, created separate conceptual frameworks., Results: 18,531 records were identified. Sparsity of data on community-based services meant the reviews focused only on hospital-based (inpatient and outpatient) experiences. 53 studies were included in Review 1 and 64 in Review 2. For Review 1 (CYP), 36 discrete elements of healthcare experience were identified and organized under 8 higher order domains (e.g. staff's empathetic qualities; information-sharing/decision making; resources for socializing/play). In Review 2 (parents), 55 elements were identified and organized under 9 higher order domains. Some domains were similar to those identified in Review 1 (e.g. professionalism; information-sharing/decision-making), others were unique (e.g. supporting parenting; access to additional support)., Conclusions: Multiple and wide-ranging aspects of the way hospital healthcare is organized and delivered matters to and impacts on CYP with LT/LSCs, and their parents. The aspects that matter differ between CYP and parents, highlighting the importance of measuring and understanding CYP and parent experience seperately. These findings are key to the development of patient/parent experience measures for this patient population and the resultant conceptual frameworks have potential application in service development., (© 2023. The Author(s).)

Background: The aim of this study was to investigate the incidence of anxiety and depression in children and young people with life-limiting conditions., Methods: A comparative cohort study was conducted, using primary and secondary care data from the Clinical Practice Research Datalink (CPRD) in England. Anxiety and depression codes were identified using diagnostic, symptom and prescription codes. Incidence rates of anxiety and depression were compared across condition groups using Poisson regression, adjusting for sex, age, ethnicity, and deprivation status., Results: A total of 25,313 children and young people were included in the study: 5527 with life-limiting conditions, 6729 with chronic conditions, and 13,057 with no long-term conditions. The incidence of anxiety (IRR adj : 1.39, 95% CI: 1.09-1.77) and depression (IRR adj : 1.41, 95% CI: 1.08-1.83) was significantly higher in children and young people with life-limiting conditions, compared to children and young people with no long-term conditions., Conclusions: The higher incidence of anxiety and depression observed among children and young people with life-limiting conditions highlights the need for psychological support in this population, including further efforts to prevent, identify, and treat anxiety and depression., Impact: The analysis of primary and secondary healthcare data from England revealed that the incidence of anxiety and depression was higher among children and young people with life-limiting conditions, compared to those with no long-term conditions. This is the first study to investigate the incidence of anxiety and depression in children and young people with a wide range of life-limiting conditions. The higher incidence of anxiety and depression observed in children and young people with life-limiting conditions highlights the need for psychological support aiming to prevent, identify, and treat anxiety and depression in this population group., (© 2022. The Author(s).)

Lay Abstract: Autistic people are more likely to experience mental health difficulties compared to neurotypical people. It is very important that we understand what increases the risk for mental health difficulties, and what helps to protect against them. So far, research on this for children and young people has only investigated a small number of factors and these have been chosen by researchers and clinicians. This study took a different approach in which parents' expertise in their children was recognised. Parents were asked to tell the story of their autistic teenagers' mental health from diagnosis in early childhood through to the present, and to explain the 'theories' they developed about what affected their child's mental health - positively and negatively - and how. Parents believed a wide range of factors played a role. These include: (1) aspects of their child (e.g. their autistic traits, intelligence); (2) aspects of their surroundings (e.g. the efforts parents make to prevent and respond to their child's difficulties, features of the school they attend, availability of social activities); (3) changes their child experienced growing up (e.g. puberty, awareness of being autistic); and (4) life events involving loss and separation. Many of the factors parents identified as important have received little or no research attention to date. The findings suggest issues that should be considered in future research and reveal ways that support for parents and autistic children and teenagers can be improved.

Objectives: QbTest has been shown to improve time to decision/diagnosis for young people with attention deficit hyperactivity disorder (ADHD). The aim was to assess the feasibility of QbTest for young people in prison., Design: Single-centre feasibility randomised controlled trial (RCT), with 1:1 allocation. Concealed random allocation using an online pseudorandom list with random permuted blocks of varying sizes., Setting: One Young Offenders Institution in England., Participants: 355 young people aged 15-18 years displaying possible symptoms of ADHD were assessed for eligibility, 69 were eligible to take part and 60 were randomised., Intervention: QbTest-a computer task measuring attention, activity and impulsivity., Main Outcome Measures: Eligibility, recruitment and retention rates and acceptability of randomisation and trial participation., Results: Of the 355 young people assessed for eligibility, 69 were eligible and 60 were randomised (n=30 QbTest plus usual care; n=30 usual care alone). The study achieved the specified recruitment target. Trial participation and randomisation were deemed acceptable by the majority of participants. 78% of young people were followed up at 3 months, but only 32% at 6 months, although this was also affected by COVID-19 restrictions. Secondary outcomes were mixed. Participants including clinical staff were mostly supportive of the study and QbTest; however, some young people found QbTest hard and there were issues with implementation of the ADHD care pathway. There were no serious adverse events secondary to the study or intervention and no one was withdrawn from the study due to an adverse event., Conclusions: With adaptations, a fully powered RCT may be achievable to evaluate the effectiveness of QbTest in the assessment of ADHD in the Children and Young People Secure Estate, with time to decision (days) as the primary outcome measure. However, further programme developmental work is required to address some of the challenges highlighted prior to a larger trial., Trial Registration Number: ISRCTN17402196., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2022. Re-use permitted under CC BY. Published by BMJ.)

Objectives: This systematic review aims to assess the effectiveness of bereavement support interventions (BSIs) for parents of an infant or a child who has died from a medical condition or in unforeseen circumstances., Methods: A systematic search of MEDLINE, PsycINFO, Embase and CINAHL (1980 to January 2018) was performed to identify studies investigating BSIs for the parents of children who died between the ages of 24 weeks gestation and 30 years. Due to significant clinical and methodological heterogeneity between studies, a narrative synthesis was performed., Results: The database searches returned 24 550 records, with a further 6 identified through other sources. Of these, eight studies, reported in nine papers, met the inclusion criteria. Most studies were conducted in the USA (n=5) and in perinatal/neonatal deaths (n=6). Five of the included studies were randomised controlled trials and three were non-randomised comparative studies. Interventions were delivered to groups, individuals or families. Outcomes of interest were grief, mental health, physical health and 'others'. There were major concerns over the quality of study methods and reporting. Only three of the nine studies reported a significant difference between experimental and control arm participants in any outcomes, despite a total of 23 outcomes being measured., Conclusions: Poor methodology and reporting of the few studies which have assessed BSIs for parents limit any conclusions on their effectiveness. Agreement on core outcomes and more robust study methodology are required in this neglected area of research., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2022. No commercial re-use. See rights and permissions. Published by BMJ.)

Homecare is generally understood to refer to services that support people to continue living in their own homes. Older people are the primary users and many countries report an increase in the number using homecare services and greater spending on such provision, driven in part by investment in 'ageing in place' policies. Despite this, and reflecting social care more generally, homecare is relatively under-researched. However, in the UK at least, there is growing interest and investment in social care research. In order that this investment is not wasted, it is essential that research addresses what stakeholders identify as research priorities. This study reports work undertaken in the UK during 2021/22 to identify research priorities for homecare for older people, and a broad scoping of existing evidence. A two-stage consultation process was used. First, topic areas for research were identified through consultations with stakeholders. Second, a survey ascertained agreement and differences between groups regarding the relative importance of topic areas as research priorities. Over 50 people participated including older people (n = 7), family members (n = 11), homecare workers (n = 16), homecare providers (n = 9) and national policy, evidence and advocacy leads (n = 13). Twenty discrete research topic areas were identified. Only one topic area (Joint working between homecare and health services) was a 'Top 5' research priority for all stakeholder groups. Timely engagement with homecare and Workforce: recruitment and retention were 'Top 5' priorities for three stakeholder groups. Scoping of existing research indicates that topic areas receiving the most research attention to date are not among those identified as being of high priority for research. To our knowledge, this is the first time research priorities for homecare have been generated. Findings will be of value to research funders, organisations using research evidence and the research community., (© 2022 The Authors. Health and Social Care in the Community published by John Wiley & Sons Ltd.)

Background: Although child mortality has decreased over the last few decades, around 4,500 infants and children die in the UK every year, many of whom require palliative care. There is, however, little evidence on paediatric end-of-life care services. The current National Institute for Health and Care Excellence (NICE) guidance provides recommendations about what should be offered, but these are based on low quality evidence. The ENHANCE study aims to identify and investigate the different models of existing end-of-life care provision for infants, children, and young people in the UK, including an assessment of the outcomes and experiences for children and parents, and the cost implications to families and healthcare providers., Methods: This mixed methods study will use three linked workstreams and a cross-cutting health economics theme to examine end-of-life care models in three exemplar clinical settings: infant, children and young adult cancer services (PTCs), paediatric intensive care units (PICUs), and neonatal units (NNUs).Workstream 1 (WS1) will survey current practice in each setting and will result in an outline of the different models of care used. WS2 is a qualitative comparison of the experiences of staff, parents and patients across the different models identified. WS3 is a quantitative assessment of the outcomes, resource use and costs across the different models identified., Discussion: Results from this study will contribute to an understanding of how end-of-life care can provide the greatest benefit for children at the end of their lives. It will also allow us to understand the likely benefits of additional funding in end-of-life care in terms of patient outcomes., Competing Interests: Competing interests: No competing interests were disclosed.

Background: Evidence on the benefits to parents of spending time with their child in the hours after their death means this is now routine practice. UK children's hospices offer parents the opportunity to extend this period by using cooling facilities (i.e. cooled 'bedrooms'; cooling blankets/mattresses) to slow deterioration., Aim: To explore parents' experiences of using cooling facilities and beliefs about how it shaped experiences of the very early days of bereavement, and on-going grieving processes., Methods: Multi-site study involving in-depth interviews with parents bereaved in the previous 3 years. Grief theories informed data analysis, which employed narrative and thematic approaches. Eight hospices supported recruitment., Results: Twenty-two mothers and eight fathers were recruited, representing 25% of families approached. Duration of use of a cooling facility varied, as did the amount of time spent with the child. All parents treasured this period, valuing the way it eased separation from their child and gave some control over when this happened. They believed all bereaved parents should have the opportunity to use a cooling facility. Using a cooling facility supported parents' engagement with grief tasks including acceptance of loss, processing emotional pain and facing changes to their lives brought about by their child's death. Memories and mementoes created during this period served to support on-going connections with the child. Parents who used a cooling facility at a hospice reported benefits of the setting itself., Conclusions: As well as easing the very early days of loss, use of cooling facilities may influence longer-term bereavement outcomes.

Objective: To examine the feasibility and preliminary efficacy of a group behavioral parenting intervention for emotional and behavioral problems (EBPs) in young autistic children., Method: This was a feasibility pilot randomized controlled trial comparing a 12-week group behavioral parenting intervention (Predictive Parenting) to an attention control (Psychoeducation). Parents of 62 autistic children 4 to 8 years of age were randomized to Predictive Parenting (n = 31) or Psychoeducation (n = 31). The primary outcome was a blinded observational measure of child behaviors that challenge. Secondary outcomes were observed child compliance and parenting behaviors; parent- and teacher-reported child EBPs; self-reported parenting practices, stress, self-efficacy, and well-being. Cost-effectiveness was also explored., Results: Recruitment, retention, completion of measures, treatment fidelity, and parental satisfaction were high for both interventions. There was no group difference in primary outcome: mean log of rate 0.18 lower (d, 90% CI = -0.44 to 0.08) in Predictive Parenting. Differences in rates of child compliance (0.44, 90% CI = 0.11 to 0.77), facilitative parenting (0.63, 90% CI = 0.33 to 0.92) and parent-defined target symptom change (-0.59, 90% CI -0.17 to -1.00) favored Predictive Parenting. There were no differences on other measures. Predictive Parenting was more expensive than Psychoeducation, with a low probability of being more cost-effective., Conclusion: Feasibility was demonstrated. There was no evidence from this pilot trial that Predictive Parenting resulted in reductions in child EBPs beyond those seen following Psychoeducation; in addition, the effect size was small, and it was more expensive. However, it showed superiority for child compliance and facilitative parenting with moderate effect sizes. Future, definitive studies should evaluate whether augmented or extended intervention would lead to larger improvements., Clinical Trial Registration Information: Autism Spectrum Treatment and Resilience (ASTAR); https://www.isrctn.com/; 91411078., (Copyright © 2021 The Authors. Published by Elsevier Inc. All rights reserved.)

Background: Hearing loss increases the risk of poor outcomes across a range of life domains. Where hearing loss is severe or profound, audiological interventions and rehabilitation have limited impact. Hearing dogs offer an alternative, or additional, intervention. They live permanently with recipients, providing sound support and companionship., Methods: A single-centre, randomised controlled trial (RCT) evaluated the impacts of a hearing dog on mental well-being, anxiety, depression, problems associated with hearing loss (responding to sounds, fearfulness/social isolation), and perceived dependency on others. Participants were applicants to the UK charity 'Hearing Dogs for Deaf People'. Eligibility criteria were as follows: first-time applicant; applying for a hearing dog (as opposed to other support provided by the charity). Participants were randomised 1:1 to the following: receive a hearing dog sooner than usual [HD], or within the usual application timeframe (wait-list [WL] comparator). The primary outcome was mental well-being (Short Warwick-Edinburgh Mental Well-Being Scale) 6 months (T1) after HD received a hearing dog. The cost-effectiveness analysis took a health and social care perspective., Results: In total, 165 participants were randomised (HD n = 83, WL n = 82). A total of 112 (67.9%) were included in the primary analysis (HD n = 55, WL n = 57). At T1, mental well-being was significantly higher in the HD arm (adjusted mean difference 2.53, 95% CI 1.27 to 3.79, p < 0.001). Significant improvements in anxiety, depression, functioning, fearfulness/social isolation, and perceived dependency, favouring the HD arm, were also observed. On average, HD participants had used fewer statutory health and social care resources. In a scenario whereby costs of provision were borne by the public sector, hearing dogs do not appear to be value for money. If the public sector made a partial contribution, it is possible that hearing dogs would be cost-effective from a public sector perspective., Conclusions: Hearing dogs appear to benefit recipients across a number of life domains, at least in the short term. Within the current funding model (costs entirely borne by the charity), hearing dogs are cost-effective from the public sector perspective. Whilst it would not be cost-effective to fully fund the provision of hearing dogs by the public sector, a partial contribution could be explored., Trial Registration: The trial was retrospectively registered with the International Standard Randomised Controlled Trial Number (ISRCTN) registry on 28.1.2019: ISRCTN36452009 ., (© 2021. The Author(s).)