Evaluation of the Children's Palliative Care Programme (CPCP). A jointly funded programme of work arising from Palliative Care for Children with Life-limiting Conditions - A National Policy. Summary Report.

Abstract

Aims of the evaluation were: - To evaluate the inputs, outputs, progress and, where possible, outcomes of the CPCP - To review the extent to which the programme is operating as a national service in terms of coverage and coordination - To assess the contribution of the CPCP towards the implementation of Palliative Care for Children with Life-limiting Conditions in Ireland–A National Policy (DOHC 2009) Methodology The evaluation consisted of three phases over a two year period. Phase One included a literature review, development of research design/tools, ethical approval and stakeholder consultation. Phase Two, a process evaluation, comprised a survey of service providers as well as stakeholder interviews and focus groups. The final summative evaluation phase consisted of an E-survey of service providers and parents; interviews and/or focus groups with parents, service providers, service managers, stakeholders, and the training provider; and a secondary analysis of feedback from training participants. Findings The CPCP had four anticipated outcomes and the collective evidence confirmed that the new services are widely understood to be adding significant value to service provision for children with life-limiting conditions and their families across all four outcomes. Recommendations The report includes a set of 20 recommendations. Six recommendations are resource dependent including additional staff resources, ongoing funding of the education programme, and improved respite and bereavement care. Seven are structural/ organisational in nature and include strengthening and maximising the future role of the CPCP, further integration of services, and a review and reconfiguration of the National Development Committee for Children’s Palliative Care. Two recommendations are administrative consisting of the provision of administrative support and making the best use of communication tools. The remaining five are on governance, training needs and progressing the development of the next phase of children’s palliative care, including priority setting. Conclusion This research has shown that the three key elements of the CPCP have been welcomed by parents, front line services and stakeholders. The initiatives have improved the level and quality of care being provided to children with life-limiting conditions and their families. The education component has also been widely accepted by the full range of healthcare staff who provide care for this cohort of children and their families. The CPCP has also had a very positive impact on the implementation of national policy. The report identifies challenges and areas for improvement and draws on the collective evidence gathered to provide a series of recommendations which will enable the setting of key priorities for the future