An Exploratory Study of the Everyday Life of Swedish Children on Home Parenteral Nutrition and Their Families

Sammanfattning: Background: Improved survival rates of preterm infants and critically ill children has resulted in an increasing number of children growing up on HPN. However, how the child and the child’s family experience HPN is sparsely studied. Purpose: Thus, this study aims to elucidate the everyday life experiences of children with intestinal failure on HPN from the perspective of the child and the child’s family. Design and Methods: We used a qualitative inductive study that included semi-structured interviews from 13 family members in six families, and we analyzed them using content analysis. Results: The family members’ experiences had an overall theme, having to take on a full-time (nursing) responsibility, and fell into three categories: family restrictions, family adjustments, and family uncertainty. Conclusion: Families on HPN had to shoulder an in-home round-the-clock (nursing) responsibility that came with a daily logistical challenge. The complexity of HPN complicates the possibility of external support, so the families choose to keep the burden within the family; consequently single-parent households have limited possibilities for relief and recovery. Practice implications: To minimize the intrusion of the treatment in the family´s everyday life and, thereby, support the families, health care professionals might find it beneficial to obtain an inventory of the everyday life needs of the specific family when introducing HPN. Further, by encouraging close kin to participate in the HPN education these families may be unburdened some more. In addition, it is essential that professionals follow the families protocol for management and not the other way around.