Comparing the needs of families of children dying from malignant and non-malignant disease: an in-depth qualitative study.

OBJECTIVE: To examine the experiences of bereaved parents concerning the care provided to children who died from cancer compared to those who died from a non-malignant condition.
DESIGN: An in-depth qualitative study with bereaved parents of children who died as a result of a life-limiting diagnosis, recruited through two regional centres.
RESULTS: Although parents' accounts displayed commonalities, key differences were discernible. Typically, parents of children with cancer considered care at the end of life as well resourced and responsive to their and their child's needs. In contrast, parents of children with non-malignant conditions reported under-resourced and inadequately responsive services. Although both groups of parents called extensively on military metaphors such as 'battle', 'fight' and 'struggle', the focus of their respective energies was different. In the one case the adversary was disease and illness; in the other it was service providers and service provision.
CONCLUSIONS: Community-based services for children and young people with cancer at the end of life were perceived by parents as responsive to parent and child needs. Conversely, community services for children and young people with non-malignant conditions were experienced as ad hoc and under-resourced. Community services for children with non-malignant conditions may require further development if they are to meet the levels of support offered to parents of children with cancer. If improvement is to be achieved, the need to raise awareness regarding hospice services, hospice referral and eligibility criteria across the entire gamut of service providers is essential.