The experience of disabled children as inpatients: a structured review and synthesis of qualitative studies reporting the views of children, parents and professionals

Abstract

Disabled children are a broad group that includes those with complex, special or additional health needs as a result of chronic physical, cognitive, communication or behavioural problems. These children are more frequently admitted to hospital than other children; however, there appears to be relatively little research on their experience as inpatients. The aim of this structured review and synthesis was to integrate findings from qualitative studies reporting the experience of disabled children when they are hospital inpatients. Inclusion criteria were: qualitative studies that focused on the experience of children less than 18 years old, with a chronic health condition or neurodisability, during an inpatient stay. Studies of outpatient episodes or intensive care units were excluded. A systematic search identified relevant abstracts, selected papers were reviewed and data were extracted. The synthesis involved elucidating and integrating common themes. Eight relevant papers were identified; data were gathered from children, parents and staff. Communication between children and staff was a dominant theme and comprised giving the child information about their condition and appropriate involvement of the child/young person in discussions and decision making that affected them. Also important was communication between parents and staff, particularly around the division of care for their child. Other themes included emotions, particularly fears, the ward environment and confidence in staff. The review suggests that disabled children's experience as inpatients is not always optimal. Improving the communication skills of ward staff and providing information to disabled children and their families would improve disabled children's experience when they are inpatients.