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Gastrostomy and quality of life in children with intellectual disability: a qualitative study
Emma J Glasson1, David Forbes2, Madhur Ravikumara3
1Telethon Kids Institute, Centre for Child Health Research, The University of Western Australia, Perth, Nedlands, Western Australia, Australia.
Insights
Gastrostomy feeding tubes significantly enhance the quality of life (QOL) for children with intellectual disabilities by improving physical health and independence. This intervention also benefits families by supporting daily interactions and resources.
Area of Science:
- Pediatric Gastroenterology
- Developmental Pediatrics
- Quality of Life Research
Background:
- Gastrostomy insertion is increasingly used for children with intellectual disabilities and feeding difficulties to ensure nutritional and medication support.
- The long-term implications of gastrostomy on the quality of life (QOL) for this vulnerable population require thorough investigation.
Purpose of the Study:
- To explore the perceived value of gastrostomy for the quality of life (QOL) of children with intellectual disabilities and their families.
- To understand the multifaceted impacts of gastrostomy across various QOL domains for both children and caregivers.
Main Methods:
- Semistructured telephone interviews were conducted with 21 primary caregivers of children (aged 2-18 years) with intellectual disabilities.
- Data were analyzed using directed content analysis, coded within established QOL domains relevant to children with intellectual disabilities and their families.
Main Results:
- Gastrostomy demonstrated benefits across multiple child QOL domains, particularly physical health, emotional well-being, social interactions, and independence.
- Family QOL was positively impacted in areas including family interactions, parenting, resources, health, safety, and advocacy.
- Challenges were noted concerning equipment issues and medical complications.
Conclusions:
- Gastrostomy provides significant long-term support across numerous QOL domains for children with intellectual disabilities and their families.
- These findings are valuable for patient counseling, education, and the development of targeted family support resources.
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.
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