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Original research
Gastrostomy and quality of life in children with intellectual disability: a qualitative study
  1. Emma J Glasson1,
  2. David Forbes2,
  3. Madhur Ravikumara3,
  4. Lakshmi Nagarajan1,4,5,
  5. Andrew Wilson1,5,6,7,
  6. Peter Jacoby1,
  7. Kingsley Wong1,
  8. Helen Leonard1,
  9. Jenny Downs1,7
  1. 1 Telethon Kids Institute, Centre for Child Health Research, The University of Western Australia, Perth, Nedlands, Western Australia, Australia
  2. 2 Medical School, The University of Western Australia, Perth, Western Australia, Australia
  3. 3 Department of Gastroenterology, Perth Children's Hospital, Perth, Western Australia, Australia
  4. 4 Children’s Neuroscience Service, Department of Neurology, Perth Children's Hospital, Perth, Western Australia, Australia
  5. 5 School of Paediatrics, The University of Western Australia, Perth, Australia, Perth, Western Australia, Australia
  6. 6 Department of Respiratory Medicine, Perth Children's Hospital, Perth, Western Australia, Australia
  7. 7 School of Physiotherapy and Exercise Science, Curtin University, Perth, Western Australia, Australia
  1. Correspondence to Dr Jenny Downs, Telethon Kids Institute, Nedlands, WA 6009, Australia; jenny.downs{at}telethonkids.org.au

Abstract

Objective Children with intellectual disability and marked feeding difficulties may undergo gastrostomy insertion to assist with their nutritional and medication needs. Use has increased recently for younger children, and it is intended to provide long-term support. This study explored the perceived value of gastrostomy for the quality of life (QOL) of children with intellectual disabilities and their families.

Methods Twenty-one primary caregivers of children with intellectual disability aged 2–18 years participated in semistructured telephone interviews. Data were analysed using directed content analysis, and data were coded to existing QOL domains relevant to children with intellectual disability and their families.

Results Benefits in each of the child and family QOL domains were represented in the interview data. For children, the impacts of gastrostomy for the physical health domain were predominant, supplemented by experiences of value for emotional well-being, social interactions, leisure activities and independence. For families, gastrostomy was integrated into multiple aspects of QOL relating to family interactions, parenting, resources and supports, health and safety, and advocacy support for disability. Shortcomings related to difficulties with equipment and complications.

Conclusions Our comprehensive overview of the value of gastrostomy for children with intellectual disability and their families was classified within a QOL framework. Gastrostomy was mainly supportive over long time periods across many QOL domains. Findings will be of use to patient counselling and education and the development of family support resources.

  • gastroenterology
  • multidisciplinary team-care
  • neurodisability
  • qualitative research

https://doi.org/10.1136/archdischild-2020-318796

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    Footnotes

    • Contributors EJG collected the data, was involved in the entire process from initial coding towards the final results and drafted and revised the manuscript. DF, MR, LN, AW, PJ, KW and HL secured funding, designed the study and reviewed the manuscript. JD secured funding, designed the study, acted as peer reviewer by checking the findings against transcripts and coding to validate the results and drafted and revised the manuscript. All authors approved the final manuscript as submitted and agree to be accountable for all aspects of the work.

    • Funding This project was funded by an Australian National Health & Medical Research Council project grant (APP1103746). HL is supported by an Australian National Health & Medical Research Council Senior Research Fellowship (APP1117105).

    • Disclaimer The funder of the study had no role in the design and conduct of the study; collection, management, analysis and interpretation of the data; preparation, review, or approval of the manuscript; and decision to submit the manuscript for publication.

    • Competing interests None declared.

    • Patient consent for publication Not required.

    • Provenance and peer review Not commissioned; externally peer reviewed.

    • Data availability statement Data are available on reasonable request. Additional quotes to support the findings will be made available on reasonable request.