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An exploratory study of the everyday life of Swedish children on home parenteral nutrition and their families.
Malmö University, Faculty of Health and Society (HS), Department of Care Science (VV). Skåne University Hospital, Malmö, Sweden; Department of Pediatrics, Malmö, Sweden.ORCID iD: 0000-0001-8700-4490
Malmö University, Faculty of Health and Society (HS), Department of Care Science (VV).ORCID iD: 0000-0002-8684-2537
2020 (English)In: Journal of Pediatric Nursing: Nursing Care of Children and Families, ISSN 0882-5963, E-ISSN 1532-8449, Vol. 52, p. e84-e89, article id S0882-5963(19)30586-XArticle in journal (Refereed) Published
Abstract [en]

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 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 each specific family when first 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.

Place, publisher, year, edition, pages
Elsevier, 2020. Vol. 52, p. e84-e89, article id S0882-5963(19)30586-X
Keywords [en]
Child, Everyday life, Families' experiences, Home parenteral nutrition, Intestinal failure, Parenteral nutrition
National Category
Nursing
Identifiers
URN: urn:nbn:se:mau:diva-14238DOI: 10.1016/j.pedn.2020.01.010ISI: 000571855900026PubMedID: 32044196Scopus ID: 2-s2.0-85079196405OAI: oai:DiVA.org:mau-14238DiVA, id: diva2:1420540
Available from: 2020-03-31 Created: 2020-03-31 Last updated: 2024-06-17Bibliographically approved

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Samuelsson, MariaWennick, Anne

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