Synthesis of health promotion concepts in children's palliative care.

BACKGROUND: Palliative care improves the health of children with a life-limiting condition and appears to draw implicitly on concepts shared with a model of health promotion. However, to date there has been no scrutiny about how this relationship may shape understanding about children's palliative care. AIM: To explore the influence of health promoting concepts on children's palliative care models, policies and guidelines. DATA SOURCES: Health and social care databases were searched for policies, models and guidelines published between 2000-2018. Additional searches of professional national and international healthcare websites, children's palliative care charities and UK and Ireland government websites were conducted. METHODS: A best fit framework synthesis was used. FINDINGS: A total of 55 policies and guidelines were reviewed for the framework synthesis. Eight themes were generated: (1) health promoting children's palliative care policy and guidelines; (2) planning ahead; (3) creating a supportive environment; (4) enabling coping and independence; (5) reorienting children's palliative care sectors; (6) the lengthening trajectory of need for support; (7) strengthening community engagement in children's palliative care; and (8) quality of life and value-based ideologies. CONCLUSION: The best fit framework synthesis confirmed a conceptual relationship between children's palliative care and health promotion. This is captured in a new model that will extend professionals' understanding.

Conflicting realities experienced by children with life-limiting and life-threatening conditions when transitioning to adult health services.

AIMS: The aim of this study was to report a secondary qualitative analysis exploring the cultural and practical differences that young people and parents experience when transitioning from children's to adult services. BACKGROUND: Despite two decades of research and quality improvement initiatives, young people with life-limiting and life-threatening conditions still find transition unsatisfactory. DESIGN: Secondary analysis: 77 qualitative interviews with children and young people (20), parents (35), siblings (1), professionals (21). METHODS: Qualitative framework analysis completed 2017. FINDINGS: Six conflicting realities were identified: Planning to live and planning to die with different illness trajectories that misaligned with adult service models; being treated as an adult and the oldest "patient" in children's services compared with being treated as a child and the youngest "patient" in adult services; being a "child" in a child's body in children's services compared with being a "child" in an adult's body in adult services for those with learning impairments; being treated by experienced children's professionals within specialist children's services compared with being treated by relatively inexperienced professionals within generalist adult services; being relatively one of many with the condition in children's services to being one of very few with the condition in adult services; meeting the same eligibility criteria in children's services but not adult services. CONCLUSION: Inequity and skills deficits can be addressed through targeted interventions. Expanding age-specific transition services, use of peer-to-peer social media, and greater joint facilitation of social support groups between health services and not-for-profit organizations may help mitigate age dilution and social isolation in adult services.

Realistic nurse-led policy implementation, optimization and evaluation: novel methodological exemplar.

AIM: To report the first large-scale realistic nurse-led implementation, optimization and evaluation of a complex children's continuing-care policy. BACKGROUND: Health policies are increasingly complex, involve multiple Government departments and frequently fail to translate into better patient outcomes. Realist methods have not yet been adapted for policy implementation. DESIGN: Research methodology - Evaluation using theory-based realist methods for policy implementation. METHODS: An expert group developed the policy and supporting tools. Implementation and evaluation design integrated diffusion of innovation theory with multiple case study and adapted realist principles. Practitioners in 12 English sites worked with Consultant Nurse implementers to manipulate the programme theory and logic of new decision-support tools and care pathway to optimize local implementation. Methods included key-stakeholder interviews, developing practical diffusion of innovation processes using key-opinion leaders and active facilitation strategies and a mini-community of practice. New and existing processes and outcomes were compared for 137 children during 2007-2008. RESULTS: Realist principles were successfully adapted to a shorter policy implementation and evaluation time frame. Important new implementation success factors included facilitated implementation that enabled 'real-time' manipulation of programme logic and local context to best-fit evolving theories of what worked; using local experiential opinion to change supporting tools to more realistically align with local context and what worked; and having sufficient existing local infrastructure to support implementation. Ten mechanisms explained implementation success and differences in outcomes between new and existing processes. CONCLUSIONS: Realistic policy implementation methods have advantages over top-down approaches, especially where clinical expertise is low and unlikely to diffuse innovations 'naturally' without facilitated implementation and local optimization.

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.

Planning ahead with children with life-limiting conditions and their families: development, implementation and evaluation of 'My Choices'.

BACKGROUND: The United Kingdom has led the world in the development of children's palliative care. Over the past two decades, the illness trajectories of children with life-limiting conditions have extended with new treatments and better home-based care. Future planning is a critically under-researched aspect of children's palliative care globally. This paper describes the development, implementation and evaluation of innovative child and parent-held palliative care planning resources. The resources were designed to facilitate parent and child thinking and engagement in future planning, and to determine care preferences and preferred locations of care for children with life-limiting conditions from diagnosis onwards. These resources fill a significant gap in palliative care planning before the end-of-life phase. METHODS: Drawing on contemporaneous research on producing evidence-based children's health information, we collaborated with leading children's not-for-profit organisations, parents, children, and professionals. A set of resources (My Choices booklets) were developed for parents and children and evaluated using interviews (parents, children, professionals) and questionnaires (professionals) and an open web-based consultation. RESULTS: Parents and children responded in three ways: Some used the booklets to produce detailed written plans with clear outcomes and ideas about how best to achieve desired outcomes. Others preferred to use the booklet to help them think about potential options. Remaining parents found it difficult to think about the future and felt there was no point because they perceived there to be no suitable local services. Professionals varied in confidence in their ability to engage with families to plan ahead and identified many challenges that prevented them from doing so. Few families shared their plans with professionals. Parents and children have far stronger preferences for home-care than professionals. CONCLUSION: The My Choices booklets were revised in light of findings, have been endorsed by Together for Short Lives, and are free to download in English and Welsh for use by parents and young people globally. More work needs to be done to support families who are not yet receptive to planning ahead. Professionals would benefit from more training in person-centred approaches to future planning and additional communications skills to increase confidence and ability to engage with families to deliver sensitive palliative care planning.

The impact on parents of a child's admission to intensive care: integration of qualitative findings from a cross-sectional study.

OBJECTIVES: In this study, parents were asked which aspects of their experience of having a child in intensive care had caused them the most distress and how they continued to be affected by these experiences. RESEARCH METHODOLOGY: Semi-structured interviews held with 32 mothers and 18 fathers of children admitted to a paediatric intensive care unit 8 months earlier, were audiotaped, transcribed and subjected to a thematic analysis. SETTING: The setting was an eight-bed paediatric intensive care unit in an inner city teaching hospital. RESULTS: Significant themes included the vividness of parents' memories of admission; the intensity of distress associated with times of transition and the lasting impact of their experience, in terms both of the ongoing need to protect their child and in relation to their priorities in life. Fathers reported different coping strategies, spent less time on the unit and were less likely than mothers to report fearing that their child would die. CONCLUSIONS: Parents report significant and persisting distress. Further research is needed on how best to support them acutely and in the longer term.

The effects of a school program on teenage mothers and their children.

The need for educational opportunity and health care provision for the increasing number of teenage mothers is discussed. An educationally-based program for inner-city school-age mothers is described, and an evaluation of its effectiveness reported. Mothers in the program completed significantly more education than did control mothers, and their children showed superior social development compared to the children of control mothers.