Twenty-one qualitative and survey-based studies were included. Findings were grouped into 10 thematic domains relating to patient and family needs.
The highest proportional frequency of findings was identified for healthcare delivery and accessibility needs (e.g. in terms of continuity, consistency and coordination of care). The same proportional frequency of findings was found for needs relating to interactions with staff. This included the importance of continual and ongoing relationships and being involved in discussions about the child's care. Parents wanted honest and straightforward communication and wanted staff to show sensitivity, empathy and competency. This suggests that these domains were most frequently mentioned as problematic for families and health care professionals.
Less frequently mentioned but nonetheless important thematic domains were information needs, bereavement needs, psychosocial needs, spiritual needs, pain and symptom management, cultural needs, siblings' needs and decision making.