The role of evaluation in the development of a service for children with life-limiting conditions in the community

Background Much of the care for children and young people with life-limiting conditions is now delivered in the home and new services have developed to support families in this setting. It is essential to monitor and evaluate whether these services are meeting the needs of families. Aims To evaluate a new rural community palliative care service for children according to the perceptions of families and service providers, to make changes suggested by families and to re-evaluate 1 year later. Method In 2005, 2 years after the onset of the service, 24 families were sent postal questionnaires, including the Measure of Process of Care (MPOC-UK). Changes suggested by families were then implemented. In 2006, all of the families receiving care from the service (n = 27) were given the option of completing the questionnaire independently or with the support of an impartial researcher. Two families also completed qualitative interviews about their experience of the service with an impartial researcher. In both years, the service providers, (n = 12 and n = 15, respectively) were asked to complete the Measure of Process of Care for Service Providers (MPOC-SP). The service providers were the clinicians providing direct care (paediatrician, community nurses, dietician, psychologist, occupational therapist, physiotherapist, and speech and language therapist). Results Seven (29%) of families completed the survey in 2005. Families rated ‘respectful and supportive care’ as the highest domain in the MPOC-UK and ‘providing general information’ as the lowest. Particular emphasis was placed on improving provision of information during the following year. Fourteen (52%) families completed the survey in 2006. Scores increased across all domains in the second survey. The largest increase was ‘providing general information’. Conclusion The results from both of the MPOC tools were extremely useful in helping providers to identify aspects of the service in need of improvement and hence implement valued changes