| Popis: |
Background: Children’s palliative care is evolving fuelled by growing demand and changing context. More children with palliative care needs are living longer with increasingly complex needs cared for by their families. This creates a context in which research is required to address important questions about how children and families can be better supported and enabled to live well. Aim: To explore and interpret the congruence of health promotion and children’s palliative care to further develop the theoretical basis underpinning children’s palliative care. Methods: A sequential mixed methods study included knowledge mapping and development of a best fit framework; review of children’s palliative care models policy and guidelines; online and paper based surveys (n=53); focus groups with novice professionals (n=8); interviews with expert international professionals (n=16); and interviews with children, (n=11), parents (n=13) and bereaved parents (n=3). A combination of descriptive statistical, deductive and inductive methods, including framework analysis, were used to analyse findings. Key findings: Synthesis of findings has revealed that participants appear to draw on some concepts that are shared by health promotion and children’s palliative care. These shared concepts appear to have important relationships in framing approaches to care that help the child and family to live well. Analysed findings are synthesised into a conceptual framework that is comprised of 6 domains and 3 levels of interaction and is supported by newly developed theory. Conclusions: Professionals draw on concepts attributed to health promotion to inform their practice. Children, families and bereaved parents described their experiences of children’s palliative care confirming and further contextualising the new conceptual framework. Health promotion has an important relationship with children’s palliative care. This is not explicit in current policy and knowledge bases but is espoused in this study as integral to practice and children’s and families’ lives. |
