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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

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What is already known on this topic?

  • Gastrostomy is an accepted surgical option to support feeding difficulties in children with intellectual disability.

  • The use of gastrostomy in children with intellectual disabilities has increased markedly over the past two decades, especially among younger children.

  • Gastrostomy can support child, parental and family well-being.

What this study adds?

  • Gastrostomy usually improved child health and community participation, supporting the child’s quality of life.

  • Gastrostomy enabled easier daily care routines for families and often more opportunities to build family and community relationships, building family quality of life.

  • For some children, needs for very complex medical care persisted, and capacity to improve child and family quality of life was more limited.

Introduction

Children with intellectual disability represent 1%–2% of births,1 2 and each experience difficulties with adaptive behaviours including conceptual, social and practical skills.3 Interventions and supports are needed for a wide range of physical and psychological comorbidities, especially in those with severe intellectual disability. Feeding is central to maintaining nutrition and growth, but difficulties such as unsafe swallowing and gastro-oesophageal reflux are common with severe disability, leading to poor nutrition, aspiration of food and fluids into the lungs, recurrent chest infections and progressive lung disease.4

Gastrostomy insertion is an accepted intervention to address feeding difficulties and has been used increasingly in intellectual disability over recent years, especially among younger children.5 A recent systematic review of qualitative studies on family experiences after gastrostomy placement found diverse effects in the daily life of affected children and their families.6 For example, many parents reported improved health of their child, parental satisfaction with ease of feeding and delivery of medications and more available time for other family members.6–8 Some parents wished they had agreed to the procedure sooner,9 although other parents have reported decisional regret,6 10 11 lamenting that oral feeding is no longer a function their child can perform and finding new feeding routines even more difficult.4 12 13

This understanding of lived experiences is crucial for family decision making and expectations and for identifying necessary supports. However, few data are available as to the relationship between gastrostomy and quality of life (QOL) of the child and family more broadly and how it could mitigate some of the disadvantages and restrictions of severe disability. The aims of this study were to use qualitative methods to explore the impacts of gastrostomy on the lives of both children with intellectual disability and their families within a QOL framework.

Methods

Participants

Participants were primary caregivers of children with intellectual disability and a gastrostomy, identified through gastrointestinal, neurological and respiratory clinical networks at Perth Children’s Hospital and the Department of Communities, Western Australia. Caregivers were required to speak fluent conversational English.

Recruitment was purposive to capture variability in child age, functional abilities and comorbidities and continued until thematic saturation was achieved, as indicated by data coding with no new themes being identified in the last three interviews. Twenty-four families (20 from hospital clinics) were contacted, and 21 interviews were conducted.

All interviewees were women (17 biological mothers, three foster mothers and one extended family member). The children were aged 2–18 years, 12 (57%) were male, 15 (71%) had epilepsy and 13 (62%) used some oral feeding in addition to their gastrostomy (table 1). The duration of gastrostomy feeding at interview ranged from 6 weeks to 11 years (median 2.5 years).

Table 1

Characteristics of the 21 children with gastrostomy whose primary caregiver participated in the study

Interview schedule

The interview schedule reflected established domains of child14 and family15 QOL. The domains of child QOL were derived from the Quality of Life Inventory-Disability (QI-Disability; physical health, positive emotions, negative emotions, social interaction, leisure and the outdoors and independence), a measure validated for children with intellectual disability.14 The domains of family QOL were derived from the Beach Center family QOL scale (family interaction, parenting, emotional well-being, physical/material well-being and disability-related supports), a measure validated for families of children with developmental disability.15 It was a semistructured ‘stem and leaf’ design: the ‘stem’ questions ensured that observations and experiences for each QOL domain were queried across caregivers and ‘leaf’ questions allowed new lines of questioning related to the stem question responses.

Procedure

Interviews were undertaken by one team member (eg, mean 35 min, range 15–68 min), digitally recorded with caregiver permission, transcribed and sent to caregivers for checking. This provided the opportunity to correct any misinterpretations and offer additional information. Postinterview feedback was received from 12 (57%) caregivers and incorporated into the transcripts.

Ethical approval for this study was provided by the Child and Adolescent Health Services Human Research Ethics Committee (2 016 157EP). Written consent to participate in the interviews was obtained for all participants.

Data analysis

Transcripts were uploaded into NVivo, and responses were coded using directed content analysis.16 Data describing child QOL were coded into one of the six domains of QI-Disability,14 and data describing family QOL were coded into one of the five domains from the Beach Center family QOL scale.15 Data that did not code to these domains would be coded as newly identified domains. To conform with paradigms of trustworthiness,17 coding was revised continually by EJG as new interview data were added to ensure consistency across interviews and checked by JD to validate the results and ensure consensus using researcher triangulation. Dependability was enhanced through the appropriateness and structure of the QOL framework applied to both data collection and analysis.14 15 Transferability was supported by a broad representativeness across caregivers according to their child’s age, gender and disability type.

Results

All data were coded to the 11 domains, with no new domains emerging. The elements for each domain are summarised descriptively below and presented in table 2 (child QOL) and table 3 (family QOL).

Table 2

Example quotations representing each of the six domains of the Quality of Life Inventory-Disability14 child quality of life instrument

Table 3

Example quotations representing each of the five domains of the Beach Center family quality of life scale15

Child QOL

Physical health

This domain was predominant and illustrated by improved general health, energy levels and alertness, supported by greater nourishment and precise delivery of medications. Caregivers reflected on threats to their child’s health with problems such as excess leakage at the gastrostomy site, care needed to avoid excess weight gain or their child vomiting or feeling discomfort. Caregivers also described prior difficulties with nasogastric tube feeding that eased following gastrostomy insertion (table 2).

Positive emotions

This domain referred to positive mood, demonstrated by smiling, body language and expressions of fun and cheekiness. Caregivers described their child as being generally happier following gastrostomy that they attributed to improved and more consistent nourishment, better overall health and, for children who retained some capacity for oral feeding, capacity to enjoy mealtimes without the pressure of needing to consume large volumes orally.

Negative emotions

This domain referred to the child feeling unsettled, upset, anxious or engaging in self-injurious behaviours. Caregivers described challenging behaviours that had been associated with feeding difficulties prior to the gastrostomy, likely resulting from hunger and difficulties ingesting prescribed medications, which reduced following gastrostomy insertion.

Social interaction

This domain referred to their child’s participation in social interactions during activities and at mealtimes. Some caregivers described how being able to feed easily in public places allowed for more opportunities for their child’s social interactions in the community. For others, there was social awkwardness and difficulties managing the gastrostomy equipment outside the home that they therefore avoided, restricting opportunities for social interactions.

Leisure and the outdoors

This domain includes physical activity, community outings and interacting with the natural environment. Caregivers provided examples of how gastrostomy feeding did not preclude the ability to participate in outdoor activities or travel, although careful forward planning for feeding was necessary. Others experienced restrictions such as coping with the equipment if their child was physically active, such as how to safely store long tubes.

Independence

This domain comprised the child’s involvement in daily routines. Some caregivers described how their child made choices in feeding orally and when to revert to gastrostomy feeding. Other stories illustrated how capacity to feed the child away from home or by other people conferred some independence from parental care, allowing more outings and the development of new relationships.

Family QOL

Family interaction

This domain referred to the quality of relationships between family members. Caregivers described moments spent together, outings and supporting each other to learn and manage the gastrostomy feeding. Reflecting on the time prior to gastrostomy insertion, caregivers described the negative impacts of feeding difficulties on parental and family time due to the strain of lengthy feed times with limited oral intake that had been important for their decision to proceed with gastrostomy (table 3).

Parenting

This domain referred to how adult family members help their children grow and develop. Caregivers reflected on their day-to-day decision making when supporting their children and consultative strategies that demonstrated their persistence and resilience as parents. These included use of online support groups to seek solutions for technical issues such as management of equipment complications or family issues such as how to manage different feeding styles yet maintain social cohesiveness at family meals.

Resources and available supports

This domain referred to family resources spanning distinct elements: (1) daily life activities to meet family needs: caregiver comments were both positive and negative and described how they managed and modified their daily routines to care for their children, the specialised resources they required across home, hospital and school settings; (2) emotional well-being: caregivers described relief associated with improved feeding regimes and delivery of medication after gastrostomy. Many caregivers described how gastrostomy feeding took less time and was associated with reduced stress, advantageous to their own mental health. They also reflected on previous fears and hesitations associated with making the decision to proceed with gastrostomy; and (3) social well-being within and outside the family: some caregivers reported they had more time to go out socially because feeding was less burdensome. Caregivers did not give responses relating to the element of financial well-being.15

Health and safety

This domain referred to the health of the family including access to healthcare and their physical environment (safety, space and comfort). Many responses described family experiences in supporting the health needs of the children, including access and barriers to timely medical care. A smaller number of responses referred to the physical environment, mainly in relation to the need for extensive medical equipment and managing gastrostomy care procedures at home. For example, ongoing and timely access to gastrostomy consumables were sometimes problematic.

Support for people with disabilities

This domain referred to advocacy (to benefit the child/family) and productivity (skills enabling participation and inclusion). Responses described parental empowerment to advocate for supports and services for their child and supporting other families with personal advice. Some caregivers described how gastrostomy feeding in public enabled advocacy through constructive conversations with members of the public.

Discussion

This study sought to understand child QOL following gastrostomy. Each of the domains of QOL in the child-based QI-Disability14 was represented in caregiver reflections. While difficulties were described, the dataset illustrated mostly positive experiences. QOL in relation to the child’s physical health was the most strongly illustrated domain with gastrostomy conferring benefits to general health and energy levels. We have previously observed elevated hospitalisations in the year prior to gastrostomy insertion, likely associated with feeding difficulties, aspiration pneumonia and/or poor growth because gastrostomy insertion was then instigated.18 In this study, gastrostomy allowed consistent feeding and medication delivery, with direct improvements in child QOL in relation to physical health.

Caregivers also described their child’s mood as more stable, possibly associated with being more alert, active and healthier, with reduced negative emotions, possibly associated with less hunger and feeding challenges. These improvements to physical and mental health allowed the child greater capacity to participate in the community, sometimes independently from the immediate family. This is consistent with the disability paradox where activity and participation restrictions can be moderated by appropriate contextual interventions, irrespective of impairments.19 20

Improvements in health-related QOL in children with severely limited motor functional abilities have been reported 12 months after gastrostomy insertion using a functioning-based child health questionnaire.21 Our study has extended observations to 11 years following gastrostomy illustrating some longer term benefits. The effects of intellectual disability are pervasive, and our study has also extended the breadth of observations by mapping data to a QOL framework, capturing each of the domains that we have identified previously as important for QOL in these children.22 23

When improvements to QOL were not narrated, circumstances were usually dominated by complex comorbidities, for example, very severe epilepsy, respiratory illnesses or difficulty with temperature regulation, necessitating extensive care regimens in the home and restricting opportunities to seek and enjoy child and family social events and going out. Medical issues can be difficult to tease apart prior to gastrostomy. Some children with severe swallowing incoordination and gastro-oesophageal reflux may achieve little improvement in QOL because of continuing aspiration.18 In addition, there is a group who will benefit from fundoplication with gastrostomy because gastro-oesophageal reflux may increase after initiation of gastrostomy feeding.24 Given the potential deterioration for some children, it is important that careful assessment, particularly of respiratory reserve and gastro-oesophageal reflux,25 be completed before embarking on gastrostomy. An open individualised discussion regarding probable benefits and possible adverse effects of gastrostomy is important prior to a definitive decision being made.

The concept of family QOL is an important extension to child QOL.15 Having a child with a disability can strain family processes and compound caregiver stress,26 and feeding difficulties are one source of stress.6–8 Family resilience relies on skill building and empowerment and in turn is influenced by supports in the environment.27 Caregivers reported that gastrostomy was a welcome help to their family QOL15 by providing easier daily routines and for many families, additional opportunities to enjoy more family interactions and community participation, and increased empowerment in supporting and advocating for their child’s health. Accordingly, resources and available supports and health and safety were the most frequently endorsed domains.

Previous negative caregiver experiences have included inadequate education or information, difficulties coping, reluctance to feed in public, reduced caregiver sleep and safety issues.6 10 28 Negative experiences were also reported in the current study. Some caregivers reported a sense of loss with the elimination of oral feeding, being reluctant to leave the home due to the burdensome nature of the feeding equipment and continued need for strong advocacy in the face of gastrostomy care issues and equipment malfunction. These impacts and challenges are important to understand for clinical counselling and ongoing monitoring and support. Participants described the technical issues of feeding and information on complications as being well addressed, and they also described how needing more information on how they can improve their child’s and family’s quality of life with gastrostomy and access to ideas on problem solving in settings beyond the home.

Previous studies have identified postgastrostomy outcomes in terms of child physical health and social interaction, caregiver mental health, family functioning and problems encountered with the equipment or procedure.6 Uniquely, our study considered the impacts of gastrostomy according to both child and family QOL,14 15 a framework that informs the value of interventions, and expanded findings, for example, including new data on child QOL domains of negative emotions and independence and family QOL domains of parenting and disability Supports. Our data also provide important insights on the value of gastrostomy for children and their families up to 11 years postprocedure. However, a smaller number of participants had experiences with a gastrostomy for longer than 5 years, and additional investigations with this group would be important for the future. There was limited mention of any effect on siblings, and this would also be an important topic for further research.

Conclusions

Gastrostomy for children with intellectual disability as mapped to available child and family QOL domains showed benefits and some shortcomings. There were some concerns with equipment and complications, but most caregivers reported important benefits, sometimes over many years of use, to child and family physical and mental health with greater scope for social interactions. Expressed needs suggest that current management could be usefully complemented with more comprehensive education programmes prior to and after the child undergoes gastrostomy insertion, including discussion of potential benefits, risks and limitations, tools for troubleshooting and providing access to advice from other parents.

Acknowledgments

We would like to thank the Department of Communities (formerly the Disability Services Commission) for allowing access to families registered with them. We gratefully acknowledge the staff at the gastrostomy clinic at Perth Children’s Hospital and the parents who reviewed our interview schedule.

References

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.

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