Caring for the child with intestinal failure on home parenteral nutrition: A scoping review

Abstract

Background: Children with intestinal failure have significant long-term medical needs that require continual complex procedures provided by the family caregiver in the home. This contributes to a high burden of care, leading to increased stress, anxiety, and depression. Understanding caregivers' perceptions of the homecare experience will augment healthcare providers' knowledge of how to prepare a family to provide care in the home setting. Methods: This study focused on the caregiving experience by examining the current literature. A scoping review was conducted using the Arksey and O'Malley methodology. Comprehensive searches on the caregiver of a child with intestinal failure receiving home parenteral nutrition were conducted in PubMed, Cumulative Index to Nursing and Allied Health Literature, Scopus, and Embase. Two reviewers screened the abstracts by title and abstract. One reviewer extracted then descriptively and thematically analyzed data to map the current evidence. Results: The initial search yielded 313 total articles. After inclusion and exclusion criteria were applied, a total of 15 relevant articles were included. Of the 15 studies, 5 studies described the caregiver's quality of life, 5 studies described caregiver's discharge preparedness, 3 studies discussed caregiver well-being (stress, anxiety, and depression), and 2 studies described the caregiver daily experience of providing care. Conclusion: Preparing families to care for children with intestinal failure in the home may bolster caregiver preparedness but also impose a significant burden. Developing programs that offer optimal training, support, and interventions for caregivers can help alleviate stress and improve outcomes for both children and their families.