Children's Perspectives on Mealtimes When Living with a Gastrostomy Tube: A Qualitative Study

Abstract

To explore children's experiences of mealtimes when living with a gastrostomy tube. Design and methods: The study used a qualitative descriptive design framed within ecocultural theory. Seven children, three girls and four boys, aged 6-12 years with long-term health conditions and a gastrostomy tube participated in individual interviews. The interviews were qualitatively analysed by means of systematic text condensation. Results: Four main categories comprised the findings of the children's mealtimes experiences: "Stable in form, open to variation," "An individual, and a shared activity," "An object that needs to be dealt with" and "A part of me." A complex picture emerged, where the children experienced nutrition, whether through the gastrostomy tube or orally, as necessary for a healthy body, although this did not suffice to make the mealtime experience positive. Conclusions: Regardless of the children's amount of oral intake, everyday mealtimes were valued as opportunities for social interaction and experienced as a predictable, routine activity no different from the mealtimes of other families. The accounts illustrated that in many situations the children knew precisely what they needed and did not need, what they liked and disliked and why. Practice implications: Healthcare professionals should take children's knowledge into consideration to a greater extent when planning follow-up and intervention. The study illuminates that children can take an active part in their healthcare when offered flexible and carefully designed communication material, even in the presence of communicative and/or intellectual disability.

Experiences before and after nasogastric and gastrostomy tube insertion with emphasis on mealtimes: a case study of an adolescent with cerebral palsy

“…One way to do this can be by using the M-FAMM, since it is established that its aspects can contribute to an increased knowledge regarding mealtimes in relation to a G-tube (Mårtensson et al, 2021 ). Therefore, an awareness and understanding of mealtimes may be advantageous in the care of children and adolescents with a G-tube (Backman & Karlsson, 2021 ; L Edwards & Leafman, 2019 ; Mahant et al, 2018 ), since knowledge regarding the G-tube and its expected consequences is necessary for the family (L Edwards & Leafman, 2019 ; Mahant et al, 2018 ).…”

“…All these aspects contributed to a relaxed mealtime for the family. In order to reach optimal mealtimes after a G-tube insertion, commitment from a paediatric care team has been emphasized (Backman et al, 2021 ; Backman & Karlsson, 2021 ; Russell et al, 2018 ). Nevertheless, the G-tube also required the family to change, giving rise to new mealtime habits.…”

An exploration of the experiences and attitudes of healthcare professionals towards enteral tube feeding for adults living in the community following stroke

“…Safety concerns associated with tube-feeding were identified by 30 out of 45 responses (67%) of participants and four main themes were identified from the text descriptions. The first theme, delivery of care, included concerns about who would deliver the feeding, for example, finding enough carers in the community who are willing to manage feeding tubes (21) and their competence as some carers require more support to ensure safe tube feeding (20). Concerns about patients being left alone when feeding between carer visits or overnight were also identified: they may be left at home for periods of time when connected to feed, nil person available to do bolus feed so pump is only option, risk of issues occurring … which [patient] could not self-manage (11).…”

“…positioning can be supported by [occupational therapist]/physio[therapist] input if under the stroke rehab service (68) and liaising with discharging hospital team, social services, safeguarding if needed, knowing the care providers in the local area that will be trained or know about tube care (35). The third theme focussed on training to address issues, for example, advise on correct way to bolus feed and offering training (20) and education and training on tube care, education on use of ENPLUGs (medical device to keep stoma open if PEG is removed) (79).…”

My point of view: Students with intellectual and communicative disabilities express their views on speech and reading using Talking Mats

“…Earlier research has focused on the communication of people with a range of different diagnoses such as cerebral palsy, Huntington's, dementia or learning disabilities (e.g., Buchholz et al, 2018;Cameron & Murphy, 2002;Ferm et al, 2010;Murphy, 1998;Murphy & Cameron, 2008;Murphy et al, 2005Murphy et al, , 2010. Research on Talking Mats has mainly focussed on adults, but some studies used the method for children with intellectual disabilities to facilitate the expression of their views, setting goals and for joint decision-making (e.g., Arvidsson et al, 2020;Backman & Karlsson, 2021;Bunning et al, 2017;Henderson et al, 2015). In the qualitative study by Henderson et al (2015) three students with severe and profound intellectual disabilities were interviewed by a speech and language therapist and/or school staff with Talking Mats concerning their school experience.…”