Experiences of parents' with children receiving long-term home parenteral nutrition

摘要

Background: Home parenteral nutrition (HPN) was introduced in the early 1970s. Parents with children receiving HPN are involved in their children's treatment and strive to resolve difficult problems in adapting to their new lifestyles. This study investigates the positive views acquired by parents' regarding their experiences with their children who are receiving long-term HPN. Methods: Participants were parents of preschool-aged children who had been receiving total parenteral nutrition for 1-6 years. In-depth interviews were conducted during which parents were questioned about their experiences during the process of providing HPN for their children. Qualitative content analysis was applied to the data. Results: It seemed useful to apply the concept of resilience; therefore, we classified the categories according to factors named in previous research studies on resilience. All parents showed increased resilience in the face of HPN-related demands. Conclusions: The planning and provision of care could be aided by the conceptualization of subjects' experiences as a process during which they have needs for support and information exchange. To approach this problem appropriately, health-care professionals need to assess both children and parents on a continuous basis. Medical professionals should plan the care of ill children in advance so that appropriate help and support for their families can be provided. Better care for ill children needs to be accompanied by lasting relationships between parents and health-care professionals.