Navigating the maze: parents’ views and influence on a paediatric haematology and oncology day care service

Abstract

To examine with families their views on the service they receive in a Paediatric Haematology/Oncology Day Care Unit. National policy emphasises the importance of involving children, young people and families in the planning of services they are receiving. To be responsive to real, as opposed to perceived needs, health care professionals are actively seeking ways to capture the voice of the families they care for through a process of consultation and action. Focus groups. A series of focus groups were undertaken with 16 families who were either on treatment or within six months of completion of treatment for acute lymphoblastic leukaemia. Tape- and note-based analysis was initially undertaken and the data sorted by means of an overview grid. Data were then analysed by the research team through comparison and agreement of final themes. The majority of families were satisfied with the care they received. Six themes are described that capture their combined thoughts on their overall experience; navigating the maze, communication, continuity of care, environment, waiting and organisation of care. Focus groups are an effective means of obtaining data from service users. Group discussion allowed for the sharing and development of ideas to be incorporated into developments within the service. Increasingly, children, young people and their families are being cared for within Paediatric Haematology/Oncology Day Care units, it is, therefore, vital that this aspect of care is designed, co-ordinated and delivered around the needs of the family. This can only be achieved by listening to the stories of those families who use our service to confirm what it is that works well and what areas of care may need to be enhanced.