Parents' experiences of living with a child with Paediatric Feeding Disorder: An interview study in Sweden

Introduction Children affected by Paediatric Feeding Disorder (PFD) cannot consume enough nourishment by mouth. PFD is highly prevalent and can affect the child's growth and development as well as family life. Aim To illuminate Swedish parents' experiences of living with a child with PFD. Method Semi-structured interviews via telephone or video calls were conducted with 14 purposefully recruited mothers and six fathers. The interviews were analysed using content analysis. Ethics approval was obtained, and the parents all gave informed consent. Results Four overarching themes emerged: Living with stress; Advocating for the child; Adapting family life; and Gaining hope. Parents described fearing for their child's life and health, feeling pressure over meals and being emotionally affected. They told of experiencing a lack of understanding from healthcare professionals, friends and family. Parents expressed a struggle for help, the need for early interventions and more effective treatment, and developed strategies for coping with the demands of feeding and caring for their child, accepting their living reality. Finding support from a network helped, but the adaptation of daily life affected their family relations. They felt gratitude towards helpful professionals and relief and joy when their child was doing better. Conclusions A more cohesive chain of care is important for children with PFD, and guidelines and educational support for healthcare providers are needed. Parental experiences provide a base for knowledge for further development of early detection and intervention for children with PFDAQ4.