Young adults as users of adult healthcare : experiences of young adults with complex or life-limiting conditions

Awareness is growing that young adults may have distinctive experiences of adult healthcare and that their needs may differ from those of other adult users. In addition, the role of adult health teams in supporting positive transitions from paediatrics is increasingly under discussion. This paper contributes to these debates. It reports a qualitative study of the experiences of young adults - all with complex chronic health conditions - as users of adult health services. Key findings from the study are reported, including an exploration of factors that help to explain interviewees' experiences. Study findings are discussed in the context of existing evidence from young adults in adult healthcare settings and theories of 'young adulthood'. Implications for training and practice are considered, and priorities for future research are identified

Replacing home visits with telephone calls to support parents implementing a sleep management intervention : findings from a pilot study and implications for future research

Background - Resource constraints may inhibit the provision of appropriate interventions for children with neurodisabilities presenting with behavioural sleep problems. Telephone calls (TC), as opposed to home visits (HV), may be a more resource efficient means of supporting these families. Objective - To conduct a preliminary investigation exploring the feasibility and acceptability of replacing HV with TC to support parents implementing sleep management strategies and to gather evidence to inform the design and methods of a full trial. Methods - Parents referred to a sleep management intervention routinely delivered by a community paediatric team were alternately allocated to receive implementation support via HV (n = 7) or TC (n = 8). Activity logs recorded the frequency, duration and mode of support. Parents and practitioners were interviewed about their experiences of receiving/delivering the intervention. Results - Intervention drop-out was low, the frequency, number of contacts and intervention duration appeared comparable. Parents allocated TC received less contact time. Parents valued implementation support irrespective of delivery mode and practitioners reported that despite initial reservations, implementation support via TC appeared to work well. Conclusions - TC appears an acceptable and convenient mode of delivering sleep support, valued by both parents and practitioners. We recommend a full-scale trial to investigate effectiveness

Parents' experiences of psychoeducational sleep management interventions : a qualitative study of parents of children with neurodisabilities

Psychoeducational approaches to managing behavioral sleep problems in children with neurodisabilities are directed at the parent, increasing their knowledge and understanding of sleep and requiring them to change the way they manage sleep disturbance. Given parental engagement with and adherence to an intervention are critical to its success, it is important we understand parents’ experiences of participating in interventions of this nature. It is surprising therefore that, to date, research in this area is extremely limited. This article reports the findings from a qualitative study of 35 parents who had received a psychoeducational sleep management intervention (SMI) delivered through 1 of the following modes: a half-day workshop (n = 8); a 4-session group-delivered intervention (n = 15); or 1-to-1 work with a specialist sleep practitioner (n = 12). The study was part of a larger program of work evaluating SMIs for children with developmental disorders, autistic spectrum conditions, or both. Purposeful sampling was used to represent intervention outcome, child’s diagnosis, parents’ education, and partner involvement in the intervention. Focus groups and individual interviews were used to gather data. The data were subject to a thematic analysis in relation to (a) parents’ descriptions of the processes by which a SMI leads to improvements in their child’s sleep; (b) parents’ views of the factors which hinder the achievement of positive intervention outcomes; and (c) parents’ views on intervention intensity and mode of delivery. The implications of the findings in terms of the design, content, and delivery of such interventions are discussed

Riding the Rapids: Living with autism or disability - An evaluation of a parenting support intervention for parents of disabled children

Evidence on the effectiveness of interventions to support parents of disabled children to manage their child's behaviour problems is limited. The aim of this study was to evaluate a group-delivered intervention (Riding the Rapids) which was specifically developed for parents of a child with a disability or autistic spectrum condition. This programme has been routinely delivered by a community-based mental health team across an urban, multi-ethnic locality for a number of years. A non-randomised controlled study design comprising an intervention group (n = 48) and comparator (no intervention) group (n = 28) was used to evaluate the effects of the intervention on child behaviour (Eyberg Child Behaviour Inventory; parent-set goals) and parenting efficacy and satisfaction (Parents Sense of Competence Scale) at post-intervention and six-month follow-up. Data on costs to the service provider of delivering the intervention were also collected. Receipt of the intervention was associated with significant reductions in parent-reported behaviour problems and significant improvements in parenting efficacy and satisfaction. At six-month follow-up, progress towards achieving parent-set child behaviour goals and parenting satisfaction had been maintained. Post hoc analysis suggests parents who do not have English as a first language may not benefit as much as other parents from this intervention. Findings suggest this is a promising intervention for parents of a child with a disability that is likely to be less resource intensive to service providers than individually delivered interventions. Limitations and implications for future research are discussed

Investigating special guardianship : experiences, challenges and outcomes

Special guardianship is overwhelmingly used for children, predominantly young children, living with relatives or family friends (mostly grandparents or aunts and uncles). Its location within kinship care is the most marked difference with adoption. In excess of 13,000 special guardianship orders were made within the study period. Almost two-thirds of children were reported to have been at risk of abuse or neglect (63.5 per cent)

Partnerships between deaf people and hearing dogs (PEDRO) : Effectiveness and Cost-Effectiveness of Receiving a Hearing Dog on Mental Well-Being and Health in People With Hearing Loss: Protocol for a Randomized Controlled Trial

Background People with hearing loss, particularly those who lose their hearing in adulthood, are at increased risk of social isolation, mental health difficulties, unemployment, loss of independence, risk of accidents, and impaired quality of life. In the United Kingdom (UK), a single third sector organisation provides hearing dogs, a specific type of assistance dog trained to provide sound support to people with hearing loss. These dogs may also deliver numerous psychosocial benefits to recipients. This has not previously been fully investigated. Objective To evaluate the impact of a hearing dog partnership on the lives of individuals with severe or profound hearing loss. Methods and Analysis A two-arm, randomised controlled trial conducted within the UK, with 162 hearing dog applicants, aged 18 years and over. Participants will be randomised 1:1 using a matched-pairs design to receive a hearing dog sooner than usual (intervention arm – Arm B) or to receive a hearing dog within the usual timeframe (comparator arm – Arm A). In the effectiveness analysis, the primary outcome is a comparison of mental wellbeing six-months after Arm B have received a hearing dog (Arm A: not yet received hearing dog), measured using the Short Warwick Edinburgh Mental Wellbeing Scale. Secondary outcome measures include the PHQ-9, GAD-7 and WSAS. An economic evaluation will assess cost-effectiveness including health-related quality-adjusted life years using the EQ-5D-5L and social-care-related-quality-adjusted life-years. Participants will be followed up for up to two years. A nested qualitative study will investigate the impacts of having a hearing dog and how these impacts come about. Results The study was funded by the National Institute for Health Research’s School for Social Care Research. Recruitment commenced in March 2017 and is now complete. 165 participants were randomised. Data collection will continue until January 2020. Results will be published in peer-reviewed journals and at conferences. A summary of the findings will be made available to participants. Ethical approval was received from the University of York’s Department of Social Policy and Social Work Research Ethics Committee (reference SPSW/S/17/1). Conclusions The findings from this study will provide, for the first time, strong and reliable evidence on the impact of having a hearing dog on people’s lives in terms of their quality of life, well-being and mental health. Trial registration The trial has been retrospectively registered International Standard Randomised Controlled Trial Number (ISRCTN) 36452009; https://doi.org/10.1186/ISRCTN36452009. Trial status: Ongoing

An evaluation of the Cygnet parenting support programme for parents of children with autism spectrum conditions

Parents of children on the autistic spectrum often struggle to understand the condition and, related to this, manage their child’s behaviour. Cygnet is a parenting intervention which aims to help parents address these difficulties, consequently improving parenting confidence. It is widely used in the United Kingdom (UK). Despite this, there have been few evaluations. This paper reports a small-scale pragmatic evaluation of Cygnet as it was routinely delivered in two English cities. A non-randomised controlled study of outcomes for parents (and their children) was conducted. Data regarding intervention fidelity and delivery costs were also collected. Parents either attending, or waiting to attend, Cygnet were recruited (intervention group: IG, n=35; comparator group: CG, n=32). Parents completed standardised measures of child behaviour and parenting sense of competence pre- and post-intervention, and at three-month follow-up (matched time points for CG). Longer-term outcomes were measured for the IG. IG parents also set specific child behaviour goals. Typically, the programme was delivered as specified by the manual. Attending Cygnet was associated with significant improvements in parenting satisfaction and the specific child behaviour goals. Findings regarding other outcomes were equivocal and further evaluation is required. We conclude that Cygnet is a promising intervention for parents of children with autism in terms of, at least, some outcomes

Evaluating specialist autism teams' provision of care and support for autistic adults without learning disabilities: the SHAPE mixed-methods study

Background The National Institute for Health and Care Excellence recommends that every locality has a ‘Specialist Autism Team’: an specialist autism, community-based, multidisciplinary service that is responsible for developing, co-ordinating and delivering care and support. The National Institute for Health and Care Excellence recommended that this novel delivery model was evaluated. Objectives The objectives were to identify services fulfilling the National Institute for Health and Care Excellence’s description of a Specialist Autism Team; to describe practitioner and user experiences; to investigate outcomes; to identify factors associated with these outcomes; and to estimate costs and investigate cost-effectiveness of these services. Design During stage 1, desk-based research and a survey to identify Specialist Autism Teams were carried out. Stage 2 comprised a mixed-methods observational study of a cohort of Specialist Autism Team users, which was followed for up to 2 years from the assessment appointment. The cohort comprised users of a Specialist Autism Team not previously diagnosed with autism (the ‘Diagnosis and Support’ group) and those already diagnosed (the ‘Support-Only’ group). Stage 2 also involved a nested qualitative study of senior practitioners and an exploratory comparison of the Diagnosis and Support group with a cohort who accessed a service which only provided autism diagnostic assessments (‘Diagnosis-Only’ cohort). Setting The setting in stage 2 was nine Specialist Autism Teams; three also provided a regional diagnostic assessment service (used to recruit the Diagnosis-Only cohort). Participants There were 252 participants in the Specialist Autism Team cohort (Diagnosis and Support, n = 164; Support Only, n = 88) and 56 participants in the Diagnosis-Only cohort. Thirty-eight participants (across both cohorts) were recruited to the qualitative evaluation and 11 practitioners to the nested qualitative study. Main outcome measures The World Health Organization Quality of Life assessment, abbreviated version (psychological domain) and the General Health Questionnaire (12-item version). Data sources Self-reported outcomes, qualitative interviews with users and focus groups with practitioners. Results A total of 18 Specialist Autism Teams were identified, all for autistic adults without learning disabilities. Services varied in their characteristics. The resources available, commissioner specifications and clinical opinion determined service design. Practitioners working in Specialist Autism Teams recruited to stage 2 reported year-on-year increases in referral rates without commensurate increases in funding. They called for an expansion of Specialist Autism Teams’ consultation/supervision function and resources for low-intensity, ongoing support. For the Specialist Autism Team cohort, there was evidence of prevention of deterioration in outcomes and positive benefit for the Diagnosis and Support group at the 1-year follow-up (T3). Users of services with more professions involved were likely to experience better outcomes; however, such services may not be considered cost-effective. Some service characteristics were not associated with outcomes, suggesting that different structural/organisational models are acceptable. Findings suggest that one-to-one work for mental health problems was cost-effective and an episodic approach to delivering care plans was more cost-effective than managed care. Qualitative findings generally align with quantitative findings; however, users consistently connected a managed-care approach to supporting improvement in outcomes. Among the Diagnosis-Only cohort, no changes in mental health outcomes at T3 were observed. Findings from the interviews with individuals in the Diagnosis and Support group and Diagnosis-Only cohort suggest that extended psychoeducation post diagnosis has an impact on immediate and longer-term adjustment. Limitations Sample size prohibited an investigation of the associations between some service characteristics and outcomes. Comparison of the Diagnosis-Only cohort and the Diagnosis and Support group was underpowered. The economic evaluation was limited by incomplete costs data. Conclusions The study provides first evidence on the implementation of Specialist Autism Teams. There is some evidence of benefit for this model of care. Service characteristics that may affect outcomes, costs and cost-effectiveness were identified. Finding suggest that extended psychoeducation post diagnosis is a critical element of Specialist Autism Team provision

Hearing dogs for people with severe and profound hearing loss: a wait-list design randomised controlled trial investigating their effectiveness and cost-effectiveness

Abstract 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

European Society of Cardiology: Cardiovascular Disease Statistics 2017

Background: The European Society of Cardiology (ESC) Atlas has been compiled by the European Heart Agency to document cardiovascular disease (CVD) statistics of the 56 ESC member countries. A major aim of this 2017 data presentation has been to compare high income and middle income ESC member countries, in order to identify inequalities in disease burden, outcomes and service provision. Methods: The Atlas utilizes a variety of data sources, including the World Health Organization, the Institute for Health Metrics and Evaluation, and the World Bank to document risk factors, prevalence and mortality of cardiovascular disease and national economic indicators. It also includes novel ESC sponsored survey data of health infrastructure and cardiovascular service provision provided by the national societies of the ESC member countries. Data presentation is descriptive with no attempt to attach statistical significance to differences observed in stratified analyses. Results: Important differences were identified between the high income and middle income member countries of the ESC with regard to CVD risk factors, disease incidence and mortality. For both women and men, the age-standardised prevalence of hypertension was lower in high income countries (18.3% and 27.3%) compared with middle income countries (23.5% and 30.3%). Smoking prevalence in men (not women) was also lower (26% vs 41.3%), and together these inequalities are likely to have contributed to the higher CVD mortality in middle income countries. Declines in CVD mortality have seen cancer becoming a more common cause of death in a number of high income member countries, but in middle income countries declines in CVD mortality have been less consistent where CVD remains the leading cause of death. Inequalities in CVD mortality are emphasised by the smaller contribution they make to potential years of life lost in high income compared with middle income countries both for women (13% vs. 23%) and men (20% vs. 27%). The downward mortality trends for CVD may, however, be threatened by the emerging obesity epidemic that is seeing rates of diabetes increasing across all ESC member countries. Survey data from the National Cardiac Societies (n=41) showed that rates of cardiac catheterization and coronary artery bypass surgery, as well as the number of specialist centres required to deliver them, were greatest in the high income member countries of the ESC. The Atlas confirmed that these ESC member countries, where the facilities for the contemporary treatment of coronary disease were best developed, were often those in which declines in coronary mortality have been most pronounced. Economic resources were not the only driver for delivery of equitable cardiovascular healthcare, as some middle income ESC member countries reported rates for interventional procedures and device implantations that matched or exceeded the rates in wealthier member countries. Conclusion: In documenting national CVD statistics, the Atlas provides valuable insights into the inequalities in risk factors, healthcare delivery and outcomes of CVD across ESC member countries. The availability of these data will underpin the ESC’s ambitious mission “to reduce the burden of cardiovascular disease” not only in its member countries, but also in nation states around the world