Journal of Pediatric Nursing 58 (2021) 53–59

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Journal of Pediatric Nursing

journal homepage: www.pediatricnursing.org

Children's perspectives on mealtimes when living with a gastrostomy

tube: A qualitative study
Ellen Backman, MSc a,b,⁎, Ann-Kristin Karlsson, PhD c
a
School of Health and Welfare, Halmstad University, Halmstad, Sweden
b
Regional habilitation center, Region Halland, Box 517, SE-301 80 Halmstad, Sweden.
c
Department of Research and Development, Region Halland, Box 517, SE-301 80 Halmstad, Sweden

a r t i c l e i n f o a b s t r a c t

Article history: Purpose: To explore children's experiences of mealtimes when living with a gastrostomy tube.
Received 4 August 2020 Design and methods: The study used a qualitative descriptive design framed within ecocultural theory. Seven chil-
Revised 24 November 2020 dren, three girls and four boys, aged 6–12 years with long-term health conditions and a gastrostomy tube partic-
Accepted 26 November 2020 ipated in individual interviews. The interviews were qualitatively analysed by means of systematic text
Available online xxxx
condensation.
Results: Four main categories comprised the findings of the children's mealtimes experiences: “Stable in form,
Keywords:
Cognitive and communicative disabilities
open to variation,” “An individual, and a shared activity,” “An object that needs to be dealt with” and “A part of
Enteral nutrition me.” A complex picture emerged, where the children experienced nutrition, whether through the gastrostomy
Qualitative research tube or orally, as necessary for a healthy body, although this did not suffice to make the mealtime experience pos-
Pediatrics itive.
Ecocultural theory 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.
© 2020 The Author(s). Published by Elsevier Inc. This is an open access article under the CC BY license (http://
creativecommons.org/licenses/by/4.0/).

Introduction
Gastrostomy tube (G-tube) feeding is an alternative mode of nutri-
tion used for children with long-term health conditions who are unable
to cover their nutritional requirements orally. Research examining pae-
diatric G-tube feeding has typically studied complications (Goldberg
et al., 2010; Pars and Çavuşoğlu, 2019) and growth (Duncan et al.,
2018; Ricciuto et al., 2015), suggesting it to be a safe procedure associ-
ated with improved nutrition and growth outcomes, despite known
complications. Caregivers have described an overall improved quality
of life following a child's G-tube placement, although G-tube use poses
emotional as well as practical everyday challenges for families
(Edwards et al., 2016; Russell et al., 2018; Sumritsopak et al., 2015). In
a study exploring how G-tube feeding in adult patients affects daily
life, the participants primarily reported undesirable effects, including
leakage, disturbed sleep and negative attitudes of others (Brotherton
et al., 2006). Positive impacts were feelings of security and relief from
the pressure to feed orally. Children are supposedly the best source of
knowledge about their own lives and have the right to contribute
their views on matters that affect them (United Nations, 1990). How-
ever, children's perspective representing their own experiences of living
with a G-tube is lacking in previous research, which instead focuses on a
“child perspective” developed by adults (Nilsson et al., 2015).
Theoretical framework

Abbreviations: AAC, Augmentative and alternative communication; CFCS,
Communication Function Classification System; G-tube, Gastrostomy tube.
⁎ Corresponding author at: School of Health and Welfare, Halmstad University, Box 823,
SE-301 18 Halmstad, Sweden.
E-mail addresses: ellen.backman@hh.se (E. Backman),
ann-kristin.karlsson@regionhalland.se (A.-K. Karlsson).
Participation in everyday activities provides children with primary
learning opportunities for communication, social interaction and other
important skills (DeGrace et al., 2016; Fiese and Schwartz, 2008; Ochs
and Shohet, 2006). Two components proposed to constitute participa-
tion are attendance (being there) and involvement (the experience of

https://doi.org/10.1016/j.pedn.2020.11.018
0882-5963/© 2020 The Author(s). Published by Elsevier Inc. This is an open access article under the CC BY license (http://creativecommons.org/licenses/by/4.0/).
E. Backman and A.-K. Karlsson
participation while attending; Imms et al., 2017). Furthermore, optimal
participation is seen as a personally determined construct, related to the
meaning associated with an activity. The conceptualisation of optimal
participation as meaningful participation suggests that the meaning
must be defined by the individual in each given context (Willis et al.,
2017). One approach to deepening the understanding of meaningful
participation is using the concepts described in ecocultural theory
(Weisner, 2002). These comprise resources and ecological fit in a partic-
ular cultural context, an activity's value for the family, the balance of
competing interests and conflicts among family members, accommoda-
tions as well as the predictability and stability of an activity (Weisner,
2002; Weisner et al., 2005). Ecocultural theory was chosen as the theo-
retical framework, as it has been proven valuable when exploring young
children's experiences of prior-to-school care (Grace and Bowes, 2011)
and understanding accommodation to sustainable everyday routines in
families in which a child uses a G-tube as documented by healthcare
professionals (Backman et al., 2019).
Previous research
The mealtime activity is important for child functioning and health,
as it constitutes a predictable structure that guides behaviour, a valuable
moment to promote healthy eating (Verhage et al., 2018) as well as pro-
viding an emotional climate to support child development and family
cohesion (Larson et al., 2006; Smith et al., 2020; Spagnola and Fiese,
2007). Following a broad definition by Larson et al. (2006), the present
study defined mealtimes as involving a coordinated series of activities:
shopping food, meal preparation, mealtime rituals, eating, social inter-
action and cleaning up. Gillen and Hancock (2006) suggest that despite
attending the same activity, children and their caregivers approach
mealtimes differently, with adults having more focus on nutrition,
whereas children integrate play into their eating. These differences
could be interpreted as divergent involvement in the activity as well
as in the meaning associated with eating. Savage and Callery (2005) ex-
plored how caregivers and children with cystic fibrosis differed in what
they regarded as important in terms of the meaning of being healthy.
Weight gain was the priority for caregivers, whereas children prioritised
having energy for physical activities. The study elucidated how children
took an active role in deciding whether to implement dietary advice,
thus their perspective needed to be considered in the dietary manage-
ment of cystic fibrosis. How children with a G-tube experience their
feeding regime and family mealtimes is still unclear, therefore the aim
of this study was to explore children's experiences of mealtimes when
living with a G-tube.
Methods
The study has a qualitative descriptive design (Sandelowski, 2000),
using a child-adapted interview concept to gain insight into the partic-
ipants' experiences. Children constitute a vulnerable group therefore
the study was designed to be as understandable and inclusive as possi-
ble. Ethical approval was granted by the Regional Ethical Review Board
in Lund (approval no. 2016/93). The participating children and their
caregivers were given detailed information regarding the voluntary par-
ticipation, confidentiality and the possibility to withdraw from the
study at any point in time. Information about the study was provided
using verbal language in combination with a communication board
with graphic symbols in order to enable the children to talk about con-
cepts that were new to them, for example “confidentiality” or “with-
drawal.” The children's caregivers gave informed, written consent. The
child's informed consent was understood as the willingness to provide
information during the interview and could thus be withdrawn at any
time, as opposed to something that was agreed in advance
(Einarsdóttir, 2007).
54
Journal of Pediatric Nursing 58 (2021) 53–59
Participants
Families were recruited by healthcare professionals at clinics re-
sponsible for the routine follow-up of children with G-tubes within
three administrative regions of Sweden. Inclusion criteria for eligible
children were: congenital physical and/or intellectual disorders, age be-
tween 6 and 12 years, a G-tube placement >1 month and a level of com-
munication that enabled them to convey their experiences using speech
or other modes of communication (e.g., sign language or graphic com-
munication boards) with or without support from a familiar communi-
cation partner. Exclusion criteria were: malignancy or traumatic brain
injury, and a communicative ability seldom effective even with familiar
partners. Children aged 6–12 years were selected as they have greater
linguistic and cognitive competence to reflect upon their experiences
compared to younger children, yet have specific needs for an adapted
interviewing methodology unlike older children (Kortesluoma et al.,
2003). Purposive sampling was applied to obtain a varied sample of
sex, age, time since G-tube placement and amount of oral food intake
to achieve maximum variation in the empirical material (Sandelowski,
2000). Seven children, three girls and four boys (aged 6–12 years, me-
dian 8 years) with various health conditions participated. Specific diag-
noses are not reported in order to preserve the anonymity. The children
lived in towns or rural areas in the southern part of Sweden. All partic-
ipants had Swedish as their first language and used speech as their pri-
mary mode of communication. Their level of communication was
classified using the five-level “Communication Function Classification
System,” CFCS (Cunningham et al., 2016; Hidecker et al., 2017). Level I
(Effective Sender and Receiver with unfamiliar and familiar partners)
to level IV (Inconsistent Sender and/or Receiver with familiar partners)
were represented among the children. Communication difficulties in-
cluded articulation disorders, word finding difficulties and general lan-
guage impairment. Time since G-tube placement varied between
6 months and 12 years (median 7 years). Caregivers estimated the
child's feeding habits using a 4-point scale: all in tube, most in tube,
mostly orally or all orally (Åvitsland et al., 2006). All feeding habit levels
were represented among the participants.
Interview techniques
Ecocultural theory (Weisner et al., 2005) served as the point of de-
parture when designing the semi-structured interview guide. The ques-
tions were adapted to fit play-based, structured activities so as to
facilitate the conversations, as play activities are more familiar and
relaxing for children than standard interviews (Einarsdóttir, 2007;
Greene and Hogan, 2005). The interviews included a warm-up activity
of the child's choice, drawing a picture of the family mealtime, playing
a board game with tailor-made questions and a picture-supported in-
terview guided by the Talking Mats® methodology (Murphy et al.,
2013). Examples of probes were “In the kitchen I like to ... ,” “A dinner
I recall is…” or “Healthcare professionals meeting a child in need for a
G-tube should describe…. “A visual schedule of the visit and communi-
cation boards with graphic symbols provided the children with a clear
structure of the visit and with different avenues through which to com-
municate their views. A pilot study including two children was con-
ducted to check the feasibility of the interview design. Following the
pilot study, the wording of some questions in the board game and in
the Talking Mats® procedure was altered due to concepts that appeared
difficult for the children to grasp. One of the pilot interviews was in-
cluded in the final analysis.
Data collection
A preparatory home visit was scheduled with each family to inform
caregivers and children of the study process, gather demographic infor-
mation about the child and included a period of initial rapport building.
Thereby, the activities in the forthcoming interview and the alternative
E. Backman and A.-K. Karlsson Journal of Pediatric Nursing 58 (2021) 53–59

and augmentative communication materials (AAC) could be tailored ac- executing the interviews, yet important to be aware of when
cording to the specific needs of the child. The individual interviews with interpreting the children's accounts during and after the visits.
the children took place at a venue of their choice. For six of the children Bracketing, a procedure in which a researcher's preconceptions are
this was in their homes and for one child the interview was performed made visible (Tufford and Newman, 2012), was accomplished through-
at the local hospital. The children were allowed to choose whether they out the research process by writing observational memos and theoreti-
wanted a support person present during the visit, which was the case cal notes as a means of examining and reflecting upon the method as
for two children. The support persons were instructed not to take an ac- well as the empirical material. Interpretations in all steps, such as the se-
tive role in the interviews but to interpret individual communication lection of meaning units, coding and formulation of categories, were
signals and help the child if required. Open-ended questions were the continuously discussed by the researchers in order to view the
first option to elicit spontaneous narratives from the children, children's accounts from different perspectives.
complemented by direct questions to follow-up vague or even contra-
dictory information (Bedoin and Scelles, 2015). Other interview tech- Results
niques were rephrasing questions, paraphrasing and summarising
responses, using hypothetical questions and the interviewer providing Four main categories reflected the children's experiences: “Stable in
examples (Bedoin and Scelles, 2015). The interviews were digitally form, open to variation,” “An individual and a shared activity,” “An ob-
video recorded to capture non-verbal communication and lasted from ject that needs to be dealt with” and “A part of me;” each built upon
35 to 70 min (mean length 52 min). The data collection took place be- two subcategories (Table 1).
tween December 2018 and November 2019.
The interviews were transcribed orthographically by the first author.
Stable in form, open to variation
Transcripts included the participants' verbal utterances as well as non-
verbal aspects of the interaction (gestures, pointing to the communica-
The first main category covered practical experiences of mealtimes
tion board or sign language usage), but excluded details that might
for children with a G-tube and comprised the two subcategories “A for-
obscure the overall accessibility of the transcript (e.g., phonological pat-
mal structure” and “Engagement and content.” The main category was
terns or repetitive hmms and yeahs). The children's drawings yielded
developed from the children's descriptions of mealtime experiences in
visual data, but it was the verbal material as the children explained
their family and how they contrasted it with mealtimes in a wider con-
their drawings that provided the data for analysis. The speech of the
text, as Gustav, 8 years, expressed “We eat dinner the same as every-
support persons was only analysed if it represented a word-by-word in-
body else.” The descriptions covered various stages of the mealtime
terpretation of the child's communication. Comments and explanations
ranging from planning, grocery shopping, preparing the food to wash-
from the support persons were ignored throughout the analysis process
ing up afterwards. The subcategory “A formal structure” depicted the
to ensure that only the child's own words were considered. The combi-
children's understanding of organisational aspects, including the
nation of a highly specific study sample, the support of an established
order of events, the people present and the location of the meal. The
theory and a strong interview dialogue was deemed to provide suffi-
mealtime was experienced as a predictable, stable activity, albeit with
cient information power in the data material (Malterud et al., 2016).
variation. The children described how the location of the meal varied
according to the season, with meals on the patio or picnics belonging
Data analysis
to the summer, Friday meals taking place on the sofa in front of the
television and birthday breakfast served in bed. Predictability was
The analysis followed the steps of systematic text condensation
also apparent in the differences experienced by some children between
(Malterud, 2012) due to having been proven valuable for analysing
dinner as a collective event, when family members gather after a day of
small samples and accounts of participants with communicative disabil-
work and school, and breakfast, which more frequently took place indi-
ities (Buchholz et al., 2018; Malterud, 2012). The NVivo 11 software
vidually. Further aspects of mealtime structure were the children's ac-
package (QSR International, 2015) was used to organise and aid the
counts of formal and informal rules. Some rules were explicitly stated,
analysis. First, the children's accounts with similar topics from the dif-
such as no tablets or smart phones while eating, talking one at a time
ferent activities were sorted into preliminary themes, such as “G-tube
and listening to what others are saying. Other mealtime rules were
Maintenance” and “Food-related Activities.” Second, meaning units
were identified and labelled with codes, which were documented
using NVivo 11. A meaning unit covered one or more sentences central
Table 1
to the aims of the study. Third, the accounts within each code were re- Overview of examples of codes, subcategories and main categories.
duced into a condensate – an artificial quotation retaining, as far as pos-
sible, the children's original wording. The condensates were written in Examples of codes Subcategories Main categories

first-person language, transforming the meaning units within a code Location A formal structure Stable in form, open to variation
into a more abstract format. Through the process of writing conden- Seating
arrangements
sates, all of the children's narratives were taken into account and
Conversational Engagement and content
given equal space. Fourth, the condensates were synthesised and topics
summarised into four main categories and eight subcategories in a pro- Food
cess combining manual sorting with grouping in NVivo 11. The catego- Discomfort Affecting the body An individual and a shared
ries were illustrated by quotations from the original interviews. Taste sensations activity
Food adjustments Being included in
Confidentiality was guaranteed by replacing the children's real names Time
with pseudonyms. Daily maintenance Tending to the An object that needs to be dealt
Hospital contacts button-device with
Trustworthiness Feeding procedures Managing everyday
Finding strategies activities
Providing Special, not different A part of me
The first author, a trained speech-language therapist accredited in information
the Talking Mats® procedure, who has ten years of work experience in- Being among
volving children with developmental disorders, conducted all inter- friends
views. The experience of interacting with children on various Supportive For my own sake
Reluctance
communicative levels and using AAC was imperative in planning and

55
E. Backman and A.-K. Karlsson
more implicit, as in the case of the child below who described the
requirements for ending a meal.
INTERVIEWER: Do you have food there [on the sofa] or do you first have
your food here at the table and then you leave?CHILD: If I say “Thank
you for the food”INTERVIEWER: What happens then?CHILD: Then I can
leave the table.(Karl, 6 years)
The subcategory “Engagement and content” included the children's
descriptions of the participants' actions, conversational topics and the
type of food served at mealtimes. Some children indicated reluctance
to play an active part during mealtimes, using expressions such as “if I
have to” or “not doing it voluntarily,” whereas other children were
more positive and used words such as “enjoy” or “love to.”
CHILD: ((reads from the board game)) “I find cooking…” I don't cook
that often ((shakes her head, laughs))INTERVIEWER: No?CHILD: But it's
fun!INTERVIEWER: You said before you sometimes chop cucumber?
CHILD: True! And sometimes I help my mother.INTERVIEWER: What do
you help her with?CHILD: Cutting vegetables and suchINTERVIEWER:
What's fun about that?CHILD: Eh (4 s) ((laughs)) Because it's fun
working in the kitchen.(Alice, 9 years)
During family mealtimes, examples of conversation topics were how
the day had been, family pets and telling jokes. The children related how
the choice of conversation topics varied between family members, as
Karl, 6 years, described “We talk about toys and that I want to go and
play. I don't know what mum and dad usually talk about.” Even though
some of the children received most of their nutrition via the G-tube, nu-
merous types of food served were explicitly mentioned. The children
described experiencing weekday foods as differing from that on special
occasions, mirroring the meaning and value connected to specific types
of meals. Salmon, seafood and tacos were mentioned as delicacies used
for celebrating, while meatballs and pancakes were examples of week-
day fare. Some of the children had no clear picture of what the family
usually eats, as 8-year Gustav expressed “I don't recall any specific din-
ner or even what we ate yesterday. I usually don't remember what we
eat, you just have to eat it, then you don't have to think about it
anymore.”
An individual and a shared activity
Embedded in this main category was the experience of how food
physically affected the child, coupled with the communal experience
of having mealtimes with family or peers. The subcategory “Affecting
the body” revealed the individual, physical sensations of food and eating
experienced by the children with G-tubes. Regardless of the amount or
variation in oral intake, the children expressed delight about specific
tastes, and how food nourished their bodies, providing them with
enough energy to play and run. They mentioned hamburgers, pasta,
pizza and various cakes as examples of favourite foods. Eating was
also described as an activity with several undesirable effects, such as dif-
ficulty processing specific food textures, stomach-ache, nausea and
choking. Teo, 6 years, remembered “Once I threw up here ((points to
the floor besides him)) … that was disgusting (3) when I eat a lot of
food, I throw up.”
The subcategory “Being included in” covered the experiences of
mealtimes as a valued social event with both inclusive and exclusive di-
mensions. Gustav, 8 years, articulated how having dinner could feel
both stressful and pleasant, reflecting the experiences of the other chil-
dren who described mealtimes as providing opportunities for a pleasur-
able time, shared with one's family, but also an event experienced as
troublesome. Some children expressed that they ate the same food as
the rest of the family or their peers, albeit with some necessary adjust-
ments. Other children had very restrictive food preferences and de-
scribed that they seldom ate the same as the rest of the family. Food
56
Journal of Pediatric Nursing 58 (2021) 53–59
adjustments were described as valuable and as making a shared meal-
time experience possible.
INTERVIEWER: How does it feel when you eat together in your family?
CHILD: GoodINTERVIEWER: What is it that feels good?CHILD: That we get
different food … If it's food that maybe I really don't like ((shakes his
head)) then I usually eat my cereals.(David, 8 years)
David's description showed that a shared and positive mealtime ex-
perience was not based on family members eating the same food but
derived from the possibility to choose according to preferences and abil-
ities. Other adjustments could be in the form of texture modification,
meals being composed of different dishes or having special food at
school. The value of eating together with the rest of the family was
expressed by all children. Karl, 6 years, although one of the children
with very little oral intake, expressed “It feels good to eat [with my fam-
ily] and sit there calmly and talk.” David, 8 years, explained that he
favoured eating together with his family compared to eating on his
own because “you don't want to be alone, that feels boring.” However,
several children recalled episodes of eating alone due to eating more
slowly compared to the rest of the family or needing an extra snack.
The accounts reflected that “Being included in” also related to aspects
of time. In the excerpt below, Lisa described her perception of “a good
meal”.
CHILD: It's when I sort of (.) don't eat too slowly and end up alone at
the table.INTERVIEWER: Does that happen sometimes?CHILD: That I sit
aloneINTERVIEWER: So, a good meal is when you?CHILD: Don't fall
behindINTERVIEWER:Don't fall behind the others?CHILD: Yes ((nods))
INTERVIEWER: Do you recall a meal when it was like that?CHILD: I often
fall behind the others (.) And then I keep up with the others not that
often.(Lisa, 12 years)
In this excerpt, Lisa exemplify her eating as more time consuming
than for the rest of the family and the recurrence of finish the meal
alone at the table. Having a pet as company or being allowed to watch
a film were mentioned by the children as comforting strategies when
eating alone.
An object that needs to be dealt with
This main category was developed from the experiences relating to
the G-tube care, the feeding regime and the children's strategies for cop-
ing with daily challenges. The category incorporated the subcategories
“Tending to the button-device” and “Managing everyday activities.”
“Tending to the button-device” described experiences of daily care at
home and care provided at the hospital. The children were actively in-
volved in the care and described elements they managed themselves.
Their accounts reflected an understanding of why the G-tube stoma
needed cleaning as well as how to inflate and deflate the balloon keep-
ing the G-tube in place. Alice, 9 years, explained “It is important to
change water in the balloon in due time, otherwise it [the G-tube]
may crack.” They were aware of that the G-tube device needed to be
changed regularly, a procedure experienced as distressing and painful.
Deep breathing, nitrous oxide or receiving a reward afterwards were
expressed as examples of strategies for coping with the distress. The
children spoke of recurrent visits to the hospital and used words such
as “fun,” “they're nice,” but also “scary,” “boring” and “really don't
want to do it,” summarising their mixed experiences. Some children ex-
perienced the hospital check-ups as positive in order to follow their
own growth development. The importance of healthcare professionals
informing the children about the practical aspects of having a G-tube in-
cluding managing feeding and tending to the device was highlighted.
The second subcategory, “Managing everyday activities,” contained
the children's experiences of feeding procedures and how daily events
were affected by having a G-tube. Several children experienced tube
E. Backman and A.-K. Karlsson
feeding as a task managed by adults, while others provided examples of
being independent in the feeding procedure.
CHILD: During the day, then I usually take it quickly for it to end
quickly.INTERVIEWER: You can decide the speed yourself?CHILD: Mm
((nods)) and I usually have 225 … but if I'm in the car, then I usually
take it a bit slower, because otherwise I can start feeling sick.(Lisa,
12 years)
The children expressed how the G-tube feeding was mostly admin-
istered when they were drawing, using a tablet or texting with friends
and spoke of it as a completely or partly separate activity from shared
mealtimes. Some children experienced the tube-feeding procedure as
positive, a way to escape eating and being allowed to watch a film or
play computer games, while others found the necessity of sitting still
or being unable to play outside whenever they wanted annoying.
Other daily experiences mentioned were how the G-tube itched, hurt
or was in the way when sleeping or playing. Often these accounts
were coupled with home-made strategies to reduce negative experi-
ences. The G-tube was seldom described as restricting the children in
their activities.
A part of me
This main category consisted of two subcategories, “Special, not dif-
ferent” and “For my own sake” covering the children's ambiguous feel-
ings about having a G-tube. It was spoken of as a natural part of the body
and as something positive and necessary for their health, combined
with feelings of differing from their peers. The first subcategory, “Spe-
cial, not different,” contained accounts of how the children experienced
the G-tube in encounters with others, during mealtimes but also during
other instances. All children described experiences of their G-tube being
the subject of questions and comments from peers. Some found ques-
tions stressful and, if possible, preferred adults to explain the reason
for the G-tube. Gustav, 8 years, explicated “I feel so differenter (sic)
when someone asks.” Strategies to side-step enquiries were avoiding
certain types of clothing or having separate changing rooms for Physical
Education at school. On the other hand, David, 8 years, said he doesn't
bother much about questions, “I just say it's my tube and that I need
it.” The children pointed out that informing others about their special
type of feeding and being among people who knew them, and their
feeding history were important.
The subcategory “For my own sake” contained accounts of how the
children viewed the meaning of the G-tube. They were aware of its ben-
efits for their weight gain and overall energy level. Although some chil-
dren used their G-tube throughout the day, while others only used it as
a back-up during periods of illness and poor appetite, the children
expressed similar positive attitudes towards the G-tube as essential
for their health. On the question of what she thought about having a
G-tube, Cindy, 12 years, found it “very good” and exclaimed “Because
it's mine, I love it.”
Discussion
This qualitative descriptive study, including seven children with
long-term health conditions, covers experiences of mealtimes when liv-
ing with a G-tube. The findings reveal a complex picture where the chil-
dren experienced nutrition, whether through the G-tube or orally, as
necessary for a healthy body but not sufficient for a positive mealtime
experience. In accordance with the adults interviewed by Brotherton
et al. (2006), the children experienced a relief of the pressure to feed
orally at mealtimes, combined with mixed feelings towards the
G-tube. One apparent difference was how the feeding regime impacted
on daily activities. The adults described how G-tube feeding prevented
them from doing things they liked to do and limited participation on so-
cial occasions. The interview children seldom found that the G-tube
57
Journal of Pediatric Nursing 58 (2021) 53–59
restricted them, even though their accounts illustrated adaptive strate-
gies to make certain activities possible, and encompassed experiences of
feeling different compared to peers.
In the light of ecocultural theory and by breaking down the partici-
pation concept, the present study captured aspects of attendance, in-
volvement and meaning in the children's narratives. The children
described aspects of attendance in relation to various parts of the meal-
time activity, as well as G-tube care and feeding procedure. Imms et al.
(2017) suggest that people can attend different parts of the same activ-
ity. The children gave examples of this in relation to mealtimes, such as
watching a film or drawing a picture after finishing their meal, while
still sitting at the table together with the rest of the family. This can be
interpreted as a working strategy to balance competing interests
among family members and reflects the value attached to gathering
around the table. The message of this analysis is not that family meal-
times should become events where eating is individually accomplished
concurrent with other activities. Instead, these findings add to previous
research on the importance of how caregivers provide children with the
space and opportunity to participate in daily activities based on a child's
individual abilities, thereby playing a significant role in supporting the
child's access to activities. These findings also elucidate family accom-
modations striving to establish sustainable everyday routines
(Weisner et al., 2005). Aspects of involvement occurred in narratives
about how the children engaged in preparing food or setting the table,
for example. The experiences of G-tube care and feeding procedures il-
lustrated that children's active involvement is a potentially important
part of the child's sense-of-control and that by developing their own
strategies they actively enhance their health. There were also examples
of the meaning the children attached to various activities. The children
associated food intake with having energy for physical activities, corre-
sponding to earlier research on the meaning children with cystic fibrosis
attached to eating (Savage and Callery, 2005). In accordance with Willis
et al. (2017), having fun and experiencing success were components
expressed by the children, signalling a meaningful participatory experi-
ence during mealtimes and G-tube care. Another facet of meaningful-
ness was the tradition of choosing food on one's birthday. This was
expressed by several children as valuable, despite only eating a limited
amount.
Ecocultural theory focuses on the details of everyday life and how
these form a child's experience (Grace and Bowes, 2011). Examples of
food related routines and rituals were common throughout the
children's accounts. These accounts imply an understanding of a pre-
dictable, standard sequence characterising a typical mealtime activity,
but also of traditions and associated deviations from routines. The find-
ing indicates that the families have constructed coherent and sustain-
able daily activities valued by their children, despite being faced with
challenges connected to food and eating. In line with Willis et al.
(2017) and Smith et al. (2020), the family mealtime communicates a
sense of belonging for the child and how social connectedness is devel-
oped through shared experiences. However, the children also articu-
lated how not being able to eat at the same pace as the rest of the
family evoked feelings of loneliness and exclusion, highlighting the
challenge involved in balancing between competing interests among
family members. In addition to individual experiences, their accounts
contributed to a broader ecocultural understanding of their mealtime.
For example, the child's food choices revealed individual preferences,
but also elucidated how the cultural context and current social trends
surrounding the child influenced their eating practices.
Practice implications
One clinical implication is the insight provided by the children of
their functioning and adaptive strategies in their daily life, which should
be taken into consideration to a greater extent by healthcare profes-
sionals when planning intervention. Another implication for practice
is how conversations with children must be tailored according to
E. Backman and A.-K. Karlsson
developmental and communicative level. One child on CFCS level IV had
difficulties formulating answers and recalling everyday situations re-
lated to the G-tube and eating. Answers were often “I don't know” or
repetition of a phrase recently uttered by the interviewer. These expres-
sions could be interpreted as a strategy to escape a specific question, as
limited linguistic abilities or simply that the child actually did not have
an answer. At the end of this particular interview, the child's support
person aided the conversation by recalling recent events that the child
then responded to. Although these statements were not included in
the final analysis due to the involvement of the support person, the in-
formation about communicative support is important for clinical pur-
poses. For a child with a communication level corresponding to CFCS
IV or V, collecting information through observations or photographs
from everyday life might be more useful than interviews.
Limitations and future research
The interviews and the resulting data material were associated with
the abilities and interests of both the child and the interviewer. As
discussed in Nilsson et al. (2015), this meant that a great degree of inter-
pretation and adaptation was needed by the interviewer as part of the
ongoing research process. For one child, the use of unfinished sentences
led to the telling of own experiences, whereas for another child, it was
not a helpful strategy. Drawing a picture elicited revealing descriptions
from some children but was completed swiftly by others. One way of
validating the children's narratives was by comparing the issues raised
in the different activities during the interviews, thereby ensuring that
the interpretations of what the children said were not just construed
by the researcher. Another consideration was the sample size of seven
children, some of them with communicative disorders, which could re-
strict the empirical data underpinning the analysis and the develop-
ment of categories. However, the qualitative design provided deep
insights of the children's perspectives and Malterud (2012) puts for-
ward benefits like keeping an overview of the data and preventing frag-
mentation when using systematic text condensation with a limited
number of participants.
In line with the three pillars of the UN Convention on the Rights of
the Child: Provision, Protection and Participation (United Nations,
1990), future studies should explore the interaction between children,
caregivers and healthcare professionals to identify tools and strategies
that promote a therapeutic relationship combining all three pillars. Fur-
ther research is also needed to investigate whether mealtime participa-
tion can enhance oral food intake in children.
Conclusions
Talking to children living with a G-tube about their everyday life has
nuanced the knowledge of G-tubes in children about their own unique
situation. Regardless of the amount of oral intake, the interviewed chil-
dren valued everyday mealtimes as opportunities for social interaction
and experienced as a predictable, routine activity no different from
the mealtimes of other families. The children's accounts illustrated
that in many situations they knew precisely what they needed and
did not need, what they liked and disliked and why. Therefore,
healthcare professionals should take children's knowledge into consid-
eration to a greater extent when planning G-tube follow-up and inter-
vention. This study illuminates that children can take an active part in
their healthcare when offered flexible and carefully designed communi-
cation material, even in the presence of communicative and/or intellec-
tual disability.
Funding
This work was supported by the Majblomman foundation, Sweden
[Grant no. 2020–3] and Department of Research and Development,
Region Halland, Sweden [Grant no. 894731].
58
Journal of Pediatric Nursing 58 (2021) 53–59
Declaration of Competing Interest
None.
Author statement
This work was performed by Ellen Backman, MSc, and Ann-Kristin
Karlsson, PhD. Ellen Backman: Conceptualisation, Methodology, Inves-
tigation, Formal analysis, Writing – Original draft, Writing – Review &
Editing. Ann-Kristin Karlsson: Methodology, Validation, Supervision,
Writing – Review & Editing.
Acknowledgments
We thank all the children interviewed for the study and their care-
givers for giving so generously of their time and insights.
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