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Documentation of everyday life and health care following gastrostomy tube placement in children: a content analysis of medical records
Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI). Regional Habilitation Centre, Region Halland, Kungsbacka, Sweden.ORCID iD: 0000-0001-5499-7246
CHILD Research group, SIDR, School of Health Sciences, Jönköping University, Jönköping, Sweden.ORCID iD: 0000-0001-9597-039X
Department of Research and Development, Region Halland, Halmstad, Sweden.
2020 (English)In: Disability and Rehabilitation, ISSN 0963-8288, E-ISSN 1464-5165, Vol. 42, no 19, p. 2747-2757Article in journal (Refereed) Published
Abstract [en]

Background: Everyday routines play a vital role in child functioning and development. This study explored health professionals’ documentation of everyday life and health care during the first year following gastrostomy tube placement in children and the content of intervention goals. Methods: The medical records of 39 children (median age 38 months, min–max: 15–192) in one region of Sweden were analysed. A content analysis approach was used with an inductive qualitative analysis supplemented by a deductive, quantitative analysis of documented intervention goals following the ICF-CY. Results: One overall theme, “Seeking a balance”, captured the view of life with a gastrostomy and the health care provided. Two categories, “Striving for physical health” and “Depicting everyday life” with seven sub-categories, captured the key aspects of the documentation. Twenty-one children (54%) had intervention goals related to the gastrostomy, and these goals primarily focused on the ICF-CY component “Body functions”. Conclusions: To some extent the medical records reflected different dimensions of everyday life, but the intervention goals clearly focused on bodily aspects. Understanding how health care for children using a gastrostomy is documented and planned by applying an ecocultural framework adds a valuable perspective and can contribute to family-centred interventions for children using a gastrostomy.Implications for Rehabilitation There is a need for increased awareness in healthcare professionals for a more consistent and holistic healthcare approach in the management of children with gastrostomy tube feeding. This study suggests that an expanded focus on children’s participation in everyday mealtimes and in the healthcare follow-up of gastrostomy tube feeding is important in enhancing the intervention outcome. Multidisciplinary teams with a shared bio-psycho-social understanding of health would contribute to a situation in which the everyday lives of households adapt to living with gastrostomy. Routine care for children with gastrostomy should follow a checklist combining crucial physiological aspects of gastrostomy tube feeding with seemingly mundane family functions in order to achieve a successful gastrostomy tube feeding intervention.  © 2019 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group.

Place, publisher, year, edition, pages
Abingdon: Taylor & Francis, 2020. Vol. 42, no 19, p. 2747-2757
Keywords [en]
Ecocultural theory, ICF, documentation, enteral nutrition, multidisciplinary, pediatric
National Category
Other Health Sciences
Identifiers
URN: urn:nbn:se:hh:diva-39521DOI: 10.1080/09638288.2019.1573383ISI: 000568865800009PubMedID: 30763520Scopus ID: 2-s2.0-85061826776OAI: oai:DiVA.org:hh-39521DiVA, id: diva2:1319653
Note

Funding: the Department of Research and Development, Region Halland, Sweden and from the Linnea and Josef Carlsson’s Foundation, Helsingborg, Sweden.

Available from: 2019-06-03 Created: 2019-06-03 Last updated: 2021-10-25Bibliographically approved
In thesis
1. Ordinary mealtimes under extraordinary circumstances: Routines and rituals of nutrition, feeding and eating in children with a gastrostomy and their families
Open this publication in new window or tab >>Ordinary mealtimes under extraordinary circumstances: Routines and rituals of nutrition, feeding and eating in children with a gastrostomy and their families
2021 (English)Doctoral thesis, comprehensive summary (Other academic)
Alternative title[sv]
Vanliga måltider, ovanliga förutsättningar : Rutiner och ritualer relaterade till intag av föda och ätande i familjer där ett barn har en gastrostomi
Abstract [en]

The aim of this thesis is to explore routines and rituals related to feeding, eating, and mealtimes in families that have a child with a gastrostomy tube (G-tube), from the perspectives of healthcare professionals, the children, and their parents. The thesis is based on four empirical studies. Study I is a longitudinal, quantitative study with the aim to describe children with developmental or acquired disorders receiving a G-tube, and to compare characteristics, contacts with healthcare professionals, and longitudinal eating outcomes. Findings from Study I demonstrated that children with developmental disorders needed G-tube feeding for longer than children with acquired disorders. Children with developmental disorders were also younger at G-tube placement, and had more multidisciplinary healthcare. These findings led to the subsequent studies focused specifically on children with developmental disorders. 

Study II applies mixed methods and explores everyday life, health care, and intervention goals during the first year following G-tube placement through the documentation in medical records. In Studies III and IV, the experiences of family mealtimes for children with a G-tube and their parents are collected through individual interviews that are analysed qualitatively. Triangulation of methods, participants, researchers, and data across the four studies is applied to search for confirmation between findings, as well as to identify areas of discrepancy. Ecocultural theory, the WHO framework ICF, and the concept of participation form the conceptual framework of the thesis. Taken together, findings from the studies describe how the main experiences of feeding, eating, and mealtime relate to specific impairments of the child, the collective value attached to family mealtimes, and the parental responsibility to harmonise competing interests and conflicts among family members and/or healthcare professionals. 

This thesis extends previous research by focusing on the ecocultural context of the child in combination with a dimensional understanding of health. The findings shed light on measures taken by the families themselves to adjust to and handle their daily lives, as well as spell out areas where more support is needed. Furthermore, this thesis suggests that an expanded focus on children’s participation in everyday mealtimes, and in the healthcare follow-up of G-tube feeding, is important in enhancing intervention outcomes.

Place, publisher, year, edition, pages
Halmstad: Halmstad University Press, 2021. p. 136
Series
Halmstad University Dissertations ; 78
Keywords
AAC, ecocultural theory, enteral nutrition, ICF, participation, pediatric, health, AKK, ekokulturell teori, delaktighet, hälsa, handikappvetenskap
National Category
Nursing Nutrition and Dietetics Pediatrics Other Health Sciences
Identifiers
urn:nbn:se:hh:diva-44188 (URN)978-91-88749-64-2 (ISBN)978-91-88749-65-9 (ISBN)
Public defence
2021-05-26, Online (Zoom), 13:00 (English)
Opponent
Supervisors
Note

The work of this thesis was made possible by the financial support of the Linnea and Josef Carlsson’s foundation, the foundation Sparbanksstiftelsen Varberg, regional research- & development grants from Region Halland and the Majblomman research foundation.

Available from: 2021-04-23 Created: 2021-04-21 Last updated: 2021-05-28Bibliographically approved

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Backman, Ellen

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