Health care delivery: Perspectives of young people with chronic illness and their parents

Objective: To identify and compare perceptions of health care service delivery held by young people with chronic illness and their parents. Methods: A convenience sample of young people with chronic illness and their parents were invited to complete a confidential self-report survey. The adolescents were aged 13-18 years inclusive and attended a specialist medical clinic. Results: Participants comprised 53 young people (response rate 88%, 53/60) and 45 parents (response rate 75%, 45/60). Both young people and their parents rate honesty, confidentiality, having good medical knowledge and good listening skills as the most important qualities for a health care provider. Compared to the parent group, fewer young people report the presence of these desired qualities in their current health care provider. A quarter of young people (25%, 13/53) report they do not always trust health professionals to keep their information confidential, and 19% (10/53) of young people report having withheld information from a health professional due to a lack of trust. Some parents and young people would like to discuss a wider range of health topics, including mental health issues, than they currently do with their health provider. Young people and their parents report limited planning with their current health provider for transition to adult health services. Conclusions: Young people with chronic illnesses have significant levels of dissatisfaction with the health care they receive; this has the potential to impact on their use of health care services and their health outcomes. There is a need for increased provider awareness of the important qualities of health care service delivery to young people.