Study Objectives: Audit of existing palliative care services for children in Ireland Engage with all of the stakeholders in the identification of current and prospective needs of such children and their families.
Methods Used: (1) Postal Questionnaires sent to a wide range of service providers throughout the country including specialist pallitive care services, hospital based paediatric units, health board community based services and voluntary organisations. (2) Focus groups with a sample of a professionals (including doctors, nurses, physiotherapists, occupoationa therapists, etc) providing hospital and community based care in both the voluntary and statutory sector. (3) Interviews with key policy planners and specialist service providers (4) Qualitative interviews with a purposive sample of families (5) Consultation seminars.
Results Obtained: Basic data identified overall numbers of children. It was not possible to access some core data nationally because of differences in patient recording systems. Marked variations found in quantity and range of services in different geographical areas and for children in different diagnostic groups with similar needs. The focus groups and interviews enabled a wide range of disciplines to have their perspectives represented. Family members who participated had clear views about their priorities and what they found to be helpful.
Conclusions: A uniform system of patient data is essential for creating a nationally based service that is comprehensive and responsive to needs. Quality services must incorporate a wide range of professional disciplines, be comprehensive across diagnostic categories and geographical areas and be developed in partnership with children and their families.