ABSTRACT
Background: Paediatric palliative medicine (PPM) is a holistic approach to care for children and their families. Services are growing and developing worldwide but significant disparity in service provision remains. The Paediatric Supportive and Palliative Care Team (PSPCT) at the Royal Hospital for Children in Glasgow was established in 2019, but there is still no clear integrated role within the paediatric intensive care unit (PICU) at present. Through analysing the attitudes, meaning, knowledge and understanding of PPM in the PICU environment, we hoped to explore the experiences of those providing paediatric palliative care and to identify any barriers to or facilitators of integrated working to gain a better understanding of providing this care. Methods: This qualitative study used a survey composed of five open-ended and five closed questions. Sixteen out of a possible thirty-two responses (50%) were accrued from PICU healthcare professionals, including consultants (n = 19), advanced nurse practitioners (n = 4) and band-seven nurses (n = 9). The data were comprehensively studied and analysed by two coders using summative content analysis with assistance from data management software. Codes were further developed to form categories and subcategories. Results: Two categories were found: (1) the role of palliative care and (2) experiences of providing palliative care. A total of five subcategories were found, demonstrating that the PSPCT can enhance care in PICU through collaborative working. Barriers identified included staffing, funding and stigma around palliative care. Conclusions: This study shows that PICU professionals have a good understanding of the concepts of PPM and view it as an essential part of PICU work. Barriers related to resources and misperceptions of palliative care can be overcome through improved education, funding and staff retention, but this would require buy-in from policymakers. The perspective from our relatively small team increases generalizability to growing teams across the country.
ABSTRACT
OBJECTIVES: To understand parents' experiences of receiving care for their child with medical complexity. DESIGN: Qualitative semi-structured interviews with parents of children with medical complexities across England analysed using reflexive thematic analysis. RESULTS: Twenty parents from four hospital sites in England took part in the study, a total of 17 interviews were completed, 3 joint and 14 single parent interviews. Four themes were developed: parents feel abandoned; continuity of care (made up of three subthemes); equipment barriers; and charities fill the gaps. CONCLUSIONS: The perceived quality of healthcare provided to this population was found to be inconsistent, positive examples referred to continuity of care; communication, clinical management and long-lasting relationships. However, many experienced challenges when receiving care for their children; many of these challenges have been highlighted over the past two to three decades but despite the children's needs becoming more complex, little progress appears to have been made. Parents were seen as adopting significant additional roles beyond being a parent, but they still find themselves left without support across all areas. These families require more structured support. Policy makers and commissioners need to prioritise the needs of families to enable health and social care services to provide the support required.
Subject(s)
Parents , Single Parent , Humans , Child , EnglandABSTRACT
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.
ABSTRACT
BACKGROUND: Due to medical and technological advancements, children with medical complexity are a growing population. Although previous research has identified models of care and experiences when caring for this population, the majority are the USA or Canadian based. Therefore, the aim was to identify models of care for children with medical complexity and barriers and facilitators to delivering high-quality care for this population from a 'free at point of care' national health service. METHOD: Qualitative semistructured interviews were conducted with hospital clinicians across England and analysed using a thematic framework approach. RESULTS: Thirty-seven clinicians from 11 hospital sites were interviewed. In 6 of the hospital sites, there were 14 services identified. Majority of services had a variety of components, some shared and some unique to the individual service. Clinicians faced barriers and facilitators when caring for this population as demonstrated across five categories. CONCLUSIONS: There is limited guidance and evidence on the most effective and efficient models for providing care for this population. It is not possible to determine what a service should look like as there is no consensus on the most appropriate model of care as shown in this study. Due to their complex needs, this population require coordination to ensure high standards of care. However, this was not always possible as clinicians faced barriers such as time constraints, silo thinking and a lack of available housing.
