Aims A stakeholder survey was performed in order to evaluate practice against the Association for Children's Palliative Care (ACT) Integrated Palliative Care Pathways Standards and provide a baseline for service development.
Methods A multidisciplinary subcommittee of staff adapted the ACT Service Self Assessment Tool for use in an online survey of hospital professionals. Stakeholder inclusion criteria were defined by seniority, speciality and profession (n=104). Sixty questions evaluated how well current care provision meets ACT standards by scaled and free text responses. Anonymised data were analysed using SPSS Statistics v17.0, graphs prepared with Excel v8.0 and a thematic analysis of free-text responses was completed.
Results Subgroup analysis by specialty shows both variation in response rate (table 1) and in percentage of caseload/time spent on palliative care (figure 1). Figure 2 summarises overall aspects of good practice and those in need of further development. Blue ovals in figures 3–5 highlight a selection of specific ACT Standards for improvement. Theme-based analysis reveals: (A) Strengths (1) Good experience and communication within/between professional groups. (2) PICU/NICU expertise in end-of-life care. (3) Holistic family-centred care/support and child-friendly environment. (4) Dedicated pain management and bereavement counselling services. (B) Challenges (1) Lack of shared definition/framework/structure for paediatric palliative care. (2) Poor linkage with community services: discharge planning/out of hours care. (3) Emotive communication: end-of-life discussions; debriefing after child's death. (4) Barriers preventing families accessing timely spiritual/pastoral/psychological care. (5) Practical limitations: privacy/space on ward; accommodation; interpreters. (C) Wish list (1) Dedicated paediatric palliative care team: consultant-led with regional outreach. (2) Holistic palliative care education, training and supervision for staff. (3) Greater access to psychological support: same day/out of hours and for siblings. (4) Specific written guidance/information resources for staff, children and families. (5) Clearer pathways of care linking hospital and community services: hospices/respite.
Conclusions This is the largest service evaluation of palliative care in a tertiary children's hospital, using ACT's Service Self Assessment Tool to highlight key areas for quality improvement. Senior multidisciplinary stakeholders have identified their strengths, challenges and necessary resources, processes and outcomes for service development. Stage 2 service user evaluation proposed: to explore children and families' priorities.