"I'm not a physician, but i'm the expert for my child" experiences of parents caring for their child with a life-limiting condition in an inpatient setting - A qualitative study

Objectives Children with life-limiting conditions (LLC) are exposed to frequent hospitalizations, with their parents as indispensable supporters, even in inpatient care. Data on the experiences of parents in a hospital setting are scarce. This study aims to identify the burdens and needs of parents of children with LLC in an inpatient setting to promote family-centered care and thereby strengthen parents as effective partners in care.Methods Descriptive qualitative interview study with purposeful sampling and analysis conducted according to the coding method of Kuckartz. A total of 10 interviews with parents (7 mothers, 3 fathers) were included in the analysis.Results Main topics reported by parents were (1) structural conditions, (2) commitment and competence of health care professionals, and (3) cooperation between parents and professionals. Parents acquire medical expertise during their child's illness and learn complex medical procedures to be able to competently care for their child at home. However, their competence is often denied in the inpatient setting. Parents felt that the professionals were overburdened by the complexity of the disease and the fate of the child. They perceived a lack of communication and psychosocial care as burdensome and wished for more psychosocial support and specialized inpatient palliative care structures for their child's care.Significance of results Parents should be supported as equal partners in care to improve the quality of their children's care. Sole medical care is not enough for children with LLC; therefore, a specialized multidisciplinary palliative care team is highly recommended.