Evidence-based planning and costing palliative care services for children : novel multi-method epidemiological and economic exemplar

Background: Children’s palliative care is a relatively new clinical specialty. Its nature is multi-dimensional and its delivery necessarily multi-professional. Numerous diverse public and not-for-profit organisations typically provide services and support. Because services are not centrally coordinated, they are provided in a manner that is inconsistent and incoherent. Since the first children’s hospice opened in 1982, the epidemiology of life-limiting conditions has changed with more children living longer, and many requiring transfer to adult services. Very little is known about the number of children living within any given geographical locality, costs of care, or experiences of children with ongoing palliative care needs and their families. We integrated evidence, and undertook and used novel methodological epidemiological work to develop the first evidence-based and costed commissioning exemplar. Methods: Multi-method epidemiological and economic exemplar from a health and not-for-profit organisation perspective, to estimate numbers of children under 19 years with life-limiting conditions, cost current services, determine child/parent care preferences, and cost choice of end-of-life care at home. Results: The exemplar locality (North Wales) had important gaps in service provision and the clinical network. The estimated annual total cost of current children’s palliative care was about £5.5 million; average annual care cost per child was £22,771 using 2007 prevalence estimates and £2,437- £11,045 using new 2012/13 population-based prevalence estimates. Using population-based prevalence, we estimate 2271 children with a life-limiting condition in the general exemplar population and around 501 children per year with ongoing palliative care needs in contact with hospital services. Around 24 children with a wide range of life-limiting conditions require end-of-life care per year. Choice of end-of-life care at home was requested, which is not currently universally available. We estimated a minimum (based on 1 week of end-of-life care) additional cost of £336,000 per year to provide end-of-life support at home. Were end-of-life care to span 4 weeks, the total annual additional costs increases to £536,500 (2010/11 prices). Conclusions: Findings make a significant contribution to population-based needs assessment and commissioning methodology in children’s palliative care. Further work is needed to determine with greater precision which children in the total population require access to services and when. Half of children who died 2002-7 did not have conditions that met the globally used children's palliative care condition categories, which need revision in light of findings

Transition from children's to adult services for adolescents/young adults with life-limiting conditions : developing realist programme theory through an international comparison

Abstract Background Managing transition of adolescents/young adults with life-limiting conditions from children’s to adult services has become a global health and social care issue. Suboptimal transitions from children’s to adult services can lead to measurable adverse outcomes. Interventions are emerging but there is little theory to guide service developments aimed at improving transition. The Transition to Adult Services for Young Adults with Life-limiting conditions (TAYSL study) included development of the TASYL Transition Theory, which describes eight interventions which can help prepare services and adolescents/young adults with life-limiting conditions for a successful transition. We aimed to assess the usefulness of the TASYL Transition Theory in a Canadian context to identify interventions, mechanisms and contextual factors associated with a successful transition from children’s to adult services for adolescents/young adults; and to discover new theoretical elements that might modify the TASYL Theory. Methods A cross-sectional survey focused on organisational approaches to transition was distributed to three organisations providing services to adolescents with life-limiting conditions in Toronto, Canada. This data was mapped to the TASYL Transition Theory to identify corresponding and new theoretical elements. Results Invitations were sent to 411 potentially eligible health care professionals with 56 responses from across the three participating sites. The results validated three of the eight interventions: early start to the transition process; developing adolescent/young adult autonomy; and the role of parents/carers; with partial support for the remaining five. One new intervention was identified: effective communication between healthcare professionals and the adolescent/young adult and their parents/carers. There was also support for contextual factors including those related to staff knowledge and attitudes, and a lack of time to provide transition services centred on the adolescent/young adult. Some mechanisms were supported, including the adolescent/young adult gaining confidence in relationships with service providers and in decision-making. Conclusions The Transition Theory travelled well between Ireland and Toronto, indicating its potential to guide both service development and research in different contexts. Future research could include studies with adult service providers; qualitative work to further explicate mechanisms and contextual factors; and use the theory prospectively to develop and test new or modified interventions to improve transition

Social, emotional and mental health and school exclusions research [Commissioned research study]

Five in-depth research publications led by Sarah Martin-Denham, an academic with her research team at our University, make a series of recommendations to government, to prevent more pupils from losing out on their education. The study was commissioned by Together for Children Sunderland, which provides children’s services on behalf of Sunderland City Council. It sought to provide clarity on the experiences of children at risk of exclusion or those permanently excluded from school, and learn the factors leading to the exclusion and the impact on their lives, mental health and learning. To reach her findings Sarah Martin-Denham, a Senior Lecturer in Education at Sunderland, gathered the views of 174 participants, including 55 children aged five to 16. The children and young people had been permanently excluded, received fixed-period exclusions or were on the verge of school exclusions. Caregivers, health professionals, headteachers and special educational needs co-ordinators (SENCOs) also all gave their views through lengthy interviews. What is the prevalence of primary and secondary types of Special Educational Needs (SEN) in the City of Sunderland? A national comparative analysis of school census data. Executive Summary: https://sure.sunderland.ac.uk/id/eprint/11911/ Report: http://sure.sunderland.ac.uk/id/eprint/11944/ A review of fixed-period and permanent school exclusions in children with SEN and no SEN designation in the City of Sunderland Executive Summary: https://sure.sunderland.ac.uk/id/eprint/11912/ Report: http://sure.sunderland.ac.uk/id/eprint/11943/ The enablers and barriers to successful managed moves: The voice of children, caregivers and professionals Executive Summary: https://sure.sunderland.ac.uk/id/eprint/11913/ Report: http://sure.sunderland.ac.uk/id/eprint/11942/ An investigation into the perceived enablers and barriers to mainstream schooling: The voices of children excluded from school, their caregivers and professionals Executive Summary: https://sure.sunderland.ac.uk/id/eprint/11914/ ​​​​​​​ Report: http://sure.sunderland.ac.uk/id/eprint/11941/ A review of school exclusion on the mental health, well-being of children and young people in the City of Sunderland Executive Summary: https://sure.sunderland.ac.uk/id/eprint/11915/ Report: http://sure.sunderland.ac.uk/id/eprint/11940

Privileging practice: facing the challenge of integrated working for outcomes for children

Integrated working for outcomes is complex and challenging in theory and practice. Yet, outcomes and integrated working are central to the policy goals for children and families in Ireland. In this article, the authors present two main arguments: first, that reflective practice offers a useful general methodology for engaging with the theoretical and practical challenges of integrated working for outcomes; and second, reflective practice as a specific approach can help achieve the balance between policy and services blueprints and the realities of practice, a necessity in achieving better outcomes for children. The authors' recent involvement in policy development work in Ireland is drawn on to illustrate the arguments