Children with life-limiting conditions and their families have complex needs. Evaluations must consider their views and perspectives to ensure care is relevant, appropriate and acceptable. The authors consulted with children, young people, their parents and local professionals to gain a more informed picture of issues facing them prior to preparing a bid to evaluate services in the area. Multiple methods of consultation were used. An overarching theme from parents was "Why does it happen like this?" Services did not seem designed to meet their needs. Whilst children and young people expressed ideas related to quality of environment, services and social life, professionals focused on ways of meeting the families' needs. The theme that linked families concerns with those of professionals was "assessing individual needs". Two questions to be addressed in the evaluation are: 1) to what extent are services designed to meet the needs of children and families and 2) to what extent are children, young people and families consulted about what they need?.
Hunt, A., Brown, E., Coad, J., Staniszewska, S., Hackng, S., Chesworth, B. & Chambers, L. 2014."Why does it happen like this?" Consulting with users and providers prior to an evaluation of services for children with life-limiting conditions and their families. Journal of Child Health Care, epub ahead of print, 2 January 2014.
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