Parental Involvement in Pediatric Hospital Care-Implications for Clinical Practice and Quality of Care

Sammanfattning: The overall aim of this thesis was to gain a deeper understanding about parents’ perceptions of quality of care and their own involvement in pediatric hospital care.Parental involvement in the care of hospitalized children has gained increased attention in recent years. The aim of this thesis was to study parental involvement in pediatric hospital care and investigate its association to the work conditions of pediatric hospital staff. The first study validated a parent questionnaire that measured parents’ views of the quality of care. The questionnaire measures quality of care by means of eight indices and an overall quality grade. Results showed that the questionnaire demonstrated satisfactory validity and reliability. Study 2 examined whether there were differences in quality ratings between respondents and non-respondents to the parent questionnaire. The main parent questionnaire was distributed in hospital and a follow-up questionnaire was sent home to a random sample of parents three week after the hospital visit. This study pinpointed a number of difficulties that need to be considered when conducting investigations of non-response.The third study aimed at gaining a deeper understanding of factors that influence parents’ views of their own involvement in pediatric care. Semi-structured interviews were conducted with parents of chronically ill children. Four themes emerged from the interviews: support, professionalism, work environment and responsibility. Underlying these four themes is a need for a clear communication between staff and parents.The fourth study examined hospital staff’s perceptions of parental involvement and possible consequences for staff work environment. A questionnaire was sent out to hospital staff at oncology, neurology and surgery units at three university children’s hospitals. Hospital staff on oncology units gave higher ratings to their workplace routines for involving parents in the child’s care, and experienced less work strain from parental demands, compared to staff on the other units. The results of this thesis indicate a clear association between parental involvement in pediatric care and the work conditions of pediatric hospital staff.