family experiences with feeding tubes in neurologic...
TRANSCRIPT
Family Experiences With FeedingTubes in Neurologic Impairment:A Systematic ReviewKatherine E. Nelson, MDa,b,c, Ashley Lacombe-Duncan, MSWd, Eyal Cohen, MD, MScb,c,e,f, David B. Nicholas, PhD, RSWg,Laura C. Rosella, PhDh, Astrid Guttmann, MD, MScb,c,e, Sanjay Mahant, MD, MScb,c,f
abstract BACKGROUND AND OBJECTIVE: Gastrostomy tubes (G-tubes) are frequently used to provide enteralnutrition for children who have neurologic impairment. Understanding the impact of G-tubesfrom the family’s perspective will inform decision-making and improve support from healthcare providers. This study explored the experiences of families after G-tube placement inchildren with neurologic impairment.
METHODS:We conducted a systematic review of English-language qualitative primary research studiesdescribing family experiences after G-tube placement. Six electronic databases were searched frominception to June 2014. Two authors independently screened and identified relevant studies,evaluated quality of reporting by using the Consolidated Criteria for Reporting Qualitative Researchtool, and extracted data. Overarching concepts were developed by using thematic analysis.
RESULTS: From 2674 screened abstracts, 84 texts were reviewed, and 13 studies met theinclusion criteria. G-tubes affect the lives of children, parents, and the family unit in manyways, both positive and negative. Improvements and challenges were described for children’shealth and happiness, for parental caregiving and stress, and for logistics and bonding withinthe family. G-tube feeding also changed relationships within the family, between the family andthe medical system, and between the family and the outside world. Furthermore, experiencesvaried, with different families framing similar concepts as positive and negative.
CONCLUSIONS: G-tube placement has diverse effects on daily life for children with neurologicimpairment and their families. Clinicians may use the themes identified in this study to guideconversations with families about their values, experiences, and expectations before and afterG-tube placement.
WHAT’S KNOWN ON THIS SUBJECT: Gastrostomytube placement is a difficult decision for familiesof children with neurologic impairment. Betterunderstanding the impact of these tubes on thelives of children and families will help improvedecision-making and support from health careproviders.
WHAT THIS STUDY ADDS: Gastrostomy tubeplacement has broad-reaching implications forchildren and their families. There are physical,emotional, and relational challenges and benefitsfor the child, the parents, and the family unit.Exploring potential outcomes with families mayimprove decision-making conversations andsupport.
aPaediatric Advanced Care Team and bDivision of Paediatric Medicine, Department of Paediatrics, Hospital forSick Children, Toronto, Ontario, Canada; cInstitute for Health Policy, Management and Evaluation, dFactor-Inwentash Faculty of Social Work, and hDalla Lana School of Public Health, University of Toronto, Toronto, Ontario,Canada; eInstitute for Clinical Evaluative Sciences, Toronto, Ontario, Canada; fCanChild Centre for ChildhoodDisability Research, Hamilton, Ontario, Canada; and gDepartment of Social Work, University of Calgary, Calgary,Alberta, Canada
Dr Nelson participated in study design, collected data, collaborated on the thematic analysis, anddrafted the initial manuscript; Ms Lacombe-Duncan collected data, collaborated on the thematicanalysis, and reviewed and revised the manuscript; Drs Cohen, Nicholas, Rosella, and Guttmannparticipated in study design and reviewed and revised the manuscript; Dr Mahant conceptualizedthe study, participated in study design, supervised data collection, collaborated on the thematicanalysis, and reviewed and revised the manuscript; and all authors approved the final manuscriptas submitted.
www.pediatrics.org/cgi/doi/10.1542/peds.2014-4162
DOI: 10.1542/peds.2014-4162
Accepted for publication Apr 15, 2015
ARTICLE PEDIATRICS Volume 136, number 1, July 2015 by guest on July 8, 2018www.aappublications.org/newsDownloaded from
Gastrostomy tubes (G-tubes) area common assistive technology usedfor children with neurologicimpairment, especially amongchildren with severe impairments.1
G-tubes allow nutrition to beprovided directly into the stomachand are typically placed to mitigatenutritional or respiratorycomplications of swallowingdysfunction.2–4 Given the symbolicsignificance of feeding as a parentalduty5 and the impact of thisintervention on the child’s dailylife,6 decisions regarding theplacement of a G-tube are oftencomplex. Many clinical practiceguidelines recommend G-tubefeeding largely based on evidencedemonstrating its effectiveness onnutritional outcomes2,3,7 withouta comprehensive understanding ofthe patient-centered outcomes thatare critical for family decision-making.
Previous studies have shownthat families of children withneurologic impairment oftenfeel they receive inadequateinformation during the decision-making process.5 Research aboutshared decision-making has foundthat adequacy of information isa potentially modifiable componentthat can decrease decisional conflictamong patients and families.8
Furthermore, the same themes can berevisited after the procedure toenhance family support.9 The presentstudy synthesized evidence fromqualitative studies regardingexperiences of families after G-tubeplacement for children withneurologic impairment; the goal wasto identify themes that can guideclinician conversations with familiesbefore and after placement ofa G-tube.
METHODS
Study Selection
Using established methods forconducting a meta-synthesis
(a systematic review of qualitativeresearch),10 we selected primaryqualitative studies that exploredthe experiences of children withneurologic impairment who werereceiving G-tube feedings andtheir families. To be eligible forinclusion, more than one-half ofthe sample in a given study had tobe children with surgically placedenteral feeding tubes. Studies had topresent qualitative data from focus
groups or interviews with parents,primary caregivers, or health careprofessionals. Studies in whichfewer than one-half of thechildren had a primary diagnosisconsistent with neurologicimpairment were also excluded. Toensure clear understanding of thenuances in participant and authorquotations, studies published ina language other than English wereexcluded.
FIGURE 1Flow diagram of study selection.
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TABLE1
Characteristicsof
Included
Studies
Source
Participants
Children,
n(Age)
PercentWith
NI(M
ost
CommonlyIncluded
NIDiagnoses)
Data
Collectionand
MethodologicOrientation
Timingof
Data
Collection,
Postgastrostom
y(Range)
PrincipalExperience
Explored
Brotherson
etal16,1995,
UnitedStates
13parents(8
mothers,5
fathers)
from
8families
n=8(m
ean:5.5y;range:
2–12
y)8/8with
NI(cerebralpalsy)
Semi-structured,individual
interviewson
multiple
occasions;methodologic
orientationnotstated
3families
with
initialinterview
before
G-tube
placem
ent;all
with
interviewsafter(2wk–5y)
Decision-makingregarding
gastrostom
yinsertion,
quality
oflife,health
services
supportfordecision-making
Brotherton
etal32,2007,
UnitedKingdom
24parents(21mothers,3
fathers)
from
24families
n=24
19/24with
NI(eg,
schizencephaly,global
developm
entaldelay,
cerebral
palsy)
Semi-structured,individual
interviews;them
aticcontent
analysis
After(0.2–7.8y;mean:2.3y)
EffectofG-tube
feedingon
daily
life
ofchildrenandtheirfamilies
Girls(n
=14):mean,
6.8
y;range:1–14
yBoys
(n=10):mean:
6.3
y;range,1–10
yCooper
13,2008,
Australia
9parents(8
mothers,1
father)from
8families
n=9(8
children;range,
2–9y;1adultaged
24y)
6/9with
NI(eg,cerebral
palsy,acutebraininjury,
hydrocephalus)
Semi-structured,individual
interviews;them
aticanalysis
After(3
mo–9y)
Challenges
andcomplications
ofhomeG-tube
feedingas
describedby
families
Craiget
al28,2006,
UnitedKingdom
22parents(allmothers)
from
22families
n=22
(mean:4.8y;
range:1.1–13.3y)
22/22with
NI(cerebral
palsy,genetic
conditions,
noconfirm
eddiagnosis)
Individual,in-depthinterviews;
discourseanalysisfrom
poststructuralism
feminist
perspective
Before
andafter(3–7mo)
Wom
en’sconstructions
offeedingtechnology
andhow
thisrelatesto
good
mothering
Mahantet
al292011,
Canada
16parents(15mothers,1
father)from
16families
n=16
(median:7.4y;
range:1.9–
18.8y)
16/16with
NI(eg,hypoxic-
ischem
icencephalopathy,genetic/
metabolic)
Semi-structured,open-ended
interviews;them
aticcontent
analysis
After(.
1y)
Well-being
offamilies
andtheir
childrenwith
NIwho
had
either
afundoplicationor
gastrojejunostom
ytube
Morrowet
al19,2007
Australia
45HCPs
HCP:18
physicians,14
nurses,6
speech
pathologists,3
dietitians,4other
alliedhealth
Notapplicable
Focusgroups;thematiccontent
analysis
Notapplicable
Perspectives
ofHCPs
about
feeding-relatedquality
oflife
inchildrenwith
cerebral
palsy
Morrowet
al18,2008,
Australia
21caregivers
(18mothers,
2fathers,1sibling)
n=21
(range:4–19
y)21/21with
NI(cerebralpalsy)
Focusgroups
12of
21hadG-tube
attim
eof
focusgroups
(timingnot
reported)
Family
perspectives
about
feeding-relatedquality
oflife
inchildrenwith
cerebralpalsy
Petersen
etal30,2006,
UnitedStates
26caregivers
(24mothers,
2grandm
others)
n=26
(mean:4.8y;
range:0.7–16
y)26/26with
NI(cerebralpalsy)
Semi-structured,individual
interviews;methodologic
orientationnotstated
After(4
mo–15
y)Caregivers’perceptions
ofgastrostom
yforchildrenwith
cerebralpalsyandadherence
tofeedingrecommendations
Rouseet
al17,2002,
UnitedKingdom
2parentsand5HCPs
child
n=2,child
details
notreported
(HCP,
n=5:surgeon,
pediatrician,d
ietitian,
nurse,andteacher)
2/2with
NI(cerebralpalsy
Individual
interviews;grounded
theory
approach
After(timingnotreported)
Effect
ofG-tube
feedingon
child
andfamily
Sleigh
27,2005,United
Kingdom
11caregivers
(9mothers,
2grandparents)
n=10
(mean:7.6y;
range:2.5–15.8y)
10/10with
NI(cerebral
palsy)
Individual
interviews;
phenom
enological
approach
6/10
afterG-tube
(6moto
3y)
Caregivers’experiencesof
feedingachild
with
cerebral
palsy
Spalding
etal31,1998,
Canada
12mothers
n=12
(mean:6y;range:
3–12
y)12/12with
NI(cerebral
palsy,Downsyndrome,
acquired
braininjury)
Individual
interviews;
afram
eworkforthe
disciplineof
mothering
was
used
asaguideto
analysis
After(1.5–8.5y)
Mothers’experiencesfeeding
childrenwith
disabilitieswho
have
agastrostom
y
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Literature Search
In consultation with a medicallibrarian, search strategies werecreated for 6 databases (Ovid,Embase, EBM Reviews–CochraneDatabase of Systematic Reviews,EBM Reviews–Health TechnologyAssessment, PsycINFO, andCINAHL) from inception to June2014. Search terms included“enteral nutrition,” “quality of life,”“pediatrics,” and their synonyms(Supplemental Appendix 1). Twoinvestigators (K.E.N. and A.L.-D.)separately evaluated the abstractsfor inclusion, and disagreements onclassification were resolved throughdiscussion. Snowballing techniqueswere used to expand the search,which included evaluating thereference lists of identified studies,citation tracking of identified studies,and review of personal files for otherrelevant studies.
Quality of Reporting
The quality of the reporting forincluded studies was evaluated byusing an established reporting tool.11
The Consolidated Criteria forReporting Qualitative Researchchecklist includes 32 items used toevaluate a text for inclusion ofcomponents within 3 categories:“research team and reflexivity,” “studydesign,” and “analysis and findings.”Because there is no evidence tosuggest that quality of reportingaccurately reflects quality of data, wedid not modify or weight analysis ofthe studies based on the quality ofreporting.
Data Analysis and Synthesis
Thematic analysis, an establishediterative process, was used.12 Twoinvestigators (K.E.N. and A.L.-D.)independently coded the text ofeach primary study line-by-line.Emerging descriptive themes withineach study were developed by theprimary research team (K.E.N., A.L.-D.,and S.M.) as the texts were readand reread. All themes weredetermined iteratively during the
analysis process rather thana priori. We extracted participantand author quotations illustratingdescriptive themes and explored thenuances in how different studiesaddressed each theme. Bysynthesizing the descriptive themesacross all of the texts, overarchinganalytic themes were generated tobetter describe the major issuesdiscussed by families regarding lifeafter G-tube placement.
RESULTS
Study Selection and Quality ofReporting
The search identified 2674 citations(Fig 1). From the citation lists, 84potentially relevant full texts werereviewed, and 11 studies metinclusion criteria. Snowballingtechniques yielded 2 articles, fora total of 13 included studies.Table 1 describes the characteristicsof the included studies, andTable 2 lists the reportedinformation about study participants.A majority of participants (84%)resided in countries with universalhealth coverage; minimaldemographic information wasavailable for family participants.Families of 14 children (7.1%)were interviewed before G-tubeplacement; from those 3 studies,only quotations related to G-tubefeeding were used in the thematicanalysis. Nine patients (4.6%) withgastrojejunostomy or jejunostomytubes were part of 2 studies; anyquotes relevant to surgically placedfeeding tubes were included.Studies that included the insightsof health care professionals on theexperiences of their patients andfamilies were analyzed as well.Table 3 presents quality of reportingresults as measured by using theConsolidated Criteria for ReportingQualitative Research checklist.11 Themean number included was 18.7items out of the possible 32 items onthe checklist (59%). Individual scoresranged from 13 to 25, suggestingTA
BLE1
Continued
Source
Participants
Children,
n(Age)
PercentWith
NI(M
ost
CommonlyIncluded
NIDiagnoses)
Data
Collectionand
MethodologicOrientation
Timingof
Data
Collection,
Postgastrostom
y(Range)
PrincipalExperience
Explored
Thorne
etal15,1997
Canada
30parents(14birth
parents,16
parent
substitutes
[eg,foster
parents])and16
HCPs
n=46
(mean:9y;range:
1.8–19
y)46/46with
NI(cerebral
palsy,genetic/m
etabolic,
acquired/traum
atic)
Semi-structured,individual
interviews;naturalistic
inquiry
After(atleast3mo;mean:
38mo)
Parent/caregiversperceived
experience
ofcaring
for
childrenwith
gastrostom
y
Thorne
etal14,1997
Canada/UnitedStates
7parents(3
birthparents
and4foster
parents)
and16
nurses
Notreported
Allwith
experience
caring
forchildrenwith
NIIndividual
interviews;
interpretive,naturalistic
inquiryapproach
After(several
years)
Meaning
ofgastrostom
yin
childrenwith
severe
disability
HCP,health
care
providers;NI,n
eurologicimpairment.
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significant variation in the quality ofreporting among the studies.
Thematic Analysis
The studies described manyoutcomes after G-tube placement forchildren, parents, and the family.These outcomes included concreteconcepts: changes in the child’sphysical health, changes in parental
caregiving, and logistical implicationsfor the family. They also describedless tangible emotional themesregarding the child’s quality of life,the parents’ stress level, and familybonding. In addition, there werethemes about relationships, bothwithin the family and between familymembers and outsiders. Table 4 liststhemes and subthemes, and depicts
which studies included each theme.Figure 2 displays theinterrelationships between thethemes, and Supplemental Appendix2 lists subthemes according to study.
All of the themes had related benefitsand challenges. However, the sameoutcome could be framed positivelyby some participants and negativelyby others, illustrating how differencesin values and context influenceperception. For example, a participantcommented, “The weight gain hasbeen tremendous, if she didn’t havethe button she’d fade away.”13
Conversely, a different parent asked,“If you have somebody that hasn’tbeen able to grow, and you cansuddenly make them grow, do youmake them grow out of the capacityof the caregiver to lift them? . . . Isgrowth always good?”14 Table 5includes quotes about other conceptswith varying interpretations.
Child Themes
Physical Outcomes
The studies described positivephysical benefits for the child thatwere associated with G-tube feeding.These benefits included weight gain,improved respiratory status, and anassured route for provision of fluidsand medications. However, familiesand health care providers also notedchallenges associated with G-tubefeeding, such as gastrointestinal andrespiratory complications anddifficulties with the tube (eg, tubeblockage and dislodgement). Onestudy reported techniques thatfamilies have developed to minimizephysical negative effects.15
Quality of Life
Families discussed significantimprovements in quality of life afterG-tube placement, as illustrated inthis quote: “. . . the unforeseenbenefits were amazing to us. Ina week, he was healthier and happier.. . . We were able to shift our focusfrom just surviving to other things.”16
However, a theme noted in 9 studies
TABLE 2 Summary of Reported Demographic Characteristics in Included Studies
Characteristic No. (%)
Family caregivers 193 (70.2)Mothers 137 (49.8)Fathers 12 (4.4)Parents (unspecified gender) 19 (6.9)Parent substitutes 20 (7.3)Grandparents 4 (1.5)Sibling 1 (0.4)
Professional care providers 82 (29.8)Nurses 45 (16.4)Physicians 20 (7.3)Speech pathologists 6 (2.2)Dietitians 4 (1.5)Allied health 6 (2.2)Teacher 1 (0.4)
Location of participants (n = 275)Australia 75 (27.3)Canada 91 (33.1)United Kingdom 64 (23.3)United States 45 (16.4)
Era of study (n = 13)1995–1999 4 (30.7)2000–2005 2 (15.4)2006–2011 7 (53.8)
Type of tubeG-tube 173 (88.3)Gastrojejunostomy/jejunostomy 9 (4.6)No tube 14 (7.1)
Reason for G-tube placement (n = 196)Not described 107 (54.6)Oral motor dysfunction 56 (28.6)Nutrition 21 (10.7)Both 12 (6.1)
Among children with neurologic impairment (n = 187), primary diagnosis typeCerebral palsy/global delay/hypoxic-ischemic encephalopathy/prematurity 103 (55.1)Genetic/syndromic/metabolic 26 (13.9)Acquired brain injury 17 (9.1)Nonacquired disability (birth or prenatal)a 36 (19.3)Undiagnosed 5 (2.6)
Family socioeconomic status (n = 193)Not described 120 (62.2)Low to middle incomeb 73 (37.8)
Family race or ethnicity (n = 193)Not described 122 (63.2)White 42 (21.8)African descent 21 (10.9)Other 8 (4.1)
a When queried, the primary study authors described this category as predominantly including children with cerebralpalsy and a few children with genetic/metabolic conditions.b Studies that reported socioeconomic status used various methods of description; this categorization representssummary interpretation by this study’s authors.
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was the negative impact on quality oflife related to discontinuation ofeating by mouth. As a mother said,“I was really upset she stoppedhaving her food because that was theone thing she did enjoy. I mean shehasn’t got much of a life and that wastaken away as well.”17 The adaptivesubthemes centered on minimizationof this loss, either by continued oralfeeding or by reframing it assomething the child did not miss.Many of the interviewed familiesdescribed continuing to offer tastes offood, some without knowledge of oragainst recommendations of their
health care team. However, otherfamilies found that their child was nolonger interested in food: “But itshocked me no end that she haschosen that she doesn’t want to eatanymore. And what I thought wasenjoyment was necessity I’m surenow.”18
Socialization
Some families described how theirchild’s improved alertness led tomore interaction. Other families andhealth care providers worried thatoral feeding had been a major sourceof interaction, which was lost with
G-tube feedings. In addition, feedingequipment decreased the child’smobility, which limited the child’sability to participate in activities.Some families reported deliberatelymaximizing their child’s socializationduring nonfeeding-related activities.
Parent Themes
Table 6 lists quotes specificallyrelated to parental experiences.
Caregiving and Stress
Some parents reported that G-tubefeedings eased caregiving burdens,but many described increasedintensity of care needs, decreasedparental sleep, and other practicalchallenges associated with G-tubefeeding. Several caregivers reportedthat their own quality of lifeimproved after G-tube placement.Other parents developed newworries about their children’s fragilehealth status and also that the G-tubemight cause prolongation of a lifewith poor quality. In addition, someparents found that their identitieshad been subsumed by their role ascaregiver. Strategies to mitigateparental stress focused on methodsthat the parents used to maintainpersonal time.
Parent–Child Relationship
Many parents described feeding asa parental duty and that G-tubefeeding, which did not have the sameemotional component as oral feeding,forced them to redefine their role asparents. They characterized theG-tube as unnatural and asrepresenting a loss of normality, bothin the parent–child relationship andfor the child. The language used bysome parents to describe the tubeand feeding by tube (eg, “necessaryevil,” “ghastly,” “mutilation,”“horrific”) revealed the intensity ofemotions they felt related to thisdecision. In contrast, other parentsfound that by reducing the frustrationassociated with oral feeding, tubefeeding improved their relationshipwith their children. In addition, some
TABLE 3 Quality of Reporting Assessment for Included Studies
Reporting Criterion11 N (%), N = 13 References
Domain 1: research team and reflexivityPersonal characteristics reporting1. Interviewer or facilitator identified 4 (31) 13, 17, 18, 272. Credentials 8 (62) 13–15, 27–313. Occupation 4 (31) 13, 27–294. Gender 10 (77) 13–17, 27–315. Experience and training 4 (31) 13, 15, 28, 29
Relationship with participants reported6. Relationship established 2 (15) 13, 167. Participant knowledge of interviewer 2 (15) 13, 318. Interviewer characteristics 3 (23) 27, 31, 32
Domain 2: study designTheoretical framework reporting9. Methodologic orientation and theory 11 (85) 13–15, 17–19, 27–29, 31, 32
Participant selection reporting10. Sampling 8 (62) 14–16, 18, 19, 29, 31, 3211. Method of approach 6 (46) 14, 18, 27, 30–3212. Sample size 12 (92) 13, 14, 16–19, 27–3213. Nonparticipation 6 (46) 13, 18, 27, 28, 31, 3214. Setting of data collection 10 (77) 13, 15–17, 27–3215. Presence of nonparticipants 5 (39) 15, 16, 18, 31, 3216. Description of sample 13 (100) 13–19, 27–32
Data collection17. Interview guide 7 (54) 13, 16, 19, 27, 30–3218. Repeat interviews 6 (46) 16–19, 27, 2819. Audio/visual recording 12 (92) 13, 15–19, 27–3220. Field notes 6 (46) 13, 16, 17, 27, 30, 3121. Duration 9 (69) 16–19, 27–29, 31, 3222. Data saturation 5 (39) 16, 18, 19, 29, 3223. Transcripts returned 2 (15) 16, 27
Domain 3: analysis and findingsData analysis24. Number of data coders 7 (54) 13, 16, 17, 27, 29, 31, 3225. Description of coding tree 11 (85) 13–19, 27, 29, 31, 3226. Derivation of themes 13 (100) 13–19, 27–3227. Software 5 (39) 18, 19, 28–3028. Participant checking 2 (15) 16, 27
Reporting29. Quotations presented 13 (100) 13–19, 27–3230. Data and findings consistent 13 (100) 13–19, 27–3231. Clarity of major themes 13 (100) 13–19, 27–3232. Clarity of minor themes 12 (92) 13–19, 27–29, 31, 32
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parents reported using what wasreally important to redefine theirrelationship with their children:“We’re parents . . . and we’re going todo absolutely everything we possiblycan to make their life as pleasurable
and as comfortable as we possiblycan. . . .”18
Parent–Medical System
Many studies mentioned changes inthe relationship between parents and
the medical system. Some parentsreported positive experiences andgood support. Other parentsdescribed their increased dependenceon the system as frustrating andfraught with challenges, particularly
TABLE 4 Themes Identified Through Thematic Analysis in Included Studies
Themes and Subthemes References
ChildPhysical outcomes 13–19, 27, 29–32+ Weight gain, improved respiratory status, assured route for intake, other physical benefits– Undesired weight gain, gastrointestinal and respiratory complications, tube complications* Strategies to mitigate negative physical outcomes
Quality of life 13–19, 27, 29–31+ Happier and more alert, improved oral receptiveness, generally improved quality of life– Loss of pleasure from eating orally* Continued oral feeding, recognition that child does not enjoy oral feeding
Child–world (socialization) 14–19, 27, 29, 30, 32+ Improved interaction, improved school attendance and participation– Negative impact on interaction at mealtimes, negative impact from decreased mobility* Strategies to maximize socialization
ParentCaregiving 13–19, 28, 29, 31, 32+ Feeding easier and less time-consuming– Increased intensity of care needs, decreased parental sleep, practical challenges with tube feeds* Modifications to facilitate caregiving
Stress 13–19, 27, 29–32+ Increased caregiver quality of life– Loss of parental independence and identity, new concerns about medical status with G-tube, worries about life prolongation* Strategies to maintain parental personal time
Parent–child 14–19, 27–32+ Improved parent–child relationship– Loss of normality, feeding as love and parental duty, G-tube as unnatural, G-tube as selfish for caregiver* Finding new meaning in relationship with child
Parent–medical system 13–19, 27, 29, 31+ Helpful providers and schools– Provider inexperience and reluctance to be involved, inadequate preparation for complications, challenges with
communication, dissatisfaction with clinical care, difference in viewpoints, lack of parental control and recognition ofexpertise
* Taking ownership of child’s care, ideas to improve care processesParent–world (stigma) 14–16, 19, 28–32+ Curiosity from other children, G-tube more hidden than nasogastric tube– Negative responses from outsiders, visible disability, challenges feeding in public* Responses to unwanted attention, feeding surreptitiously, minimizing signs of disability
FamilyLogistical 13–19, 27, 29, 32+ More flexibility in family schedule– Burdens from increased system utilization, challenges with respite, financial challenges, loss of family privacy, inadequate
access to services and support* Modifying feeding schedule
Emotional 13, 15, 16, 18, 19, 27, 29, 32+ Benefits for family cohesion, positive outcomes for siblings– Disruption of family life, negative outcomes for siblings
Intrafamily relationships 13, 16, 18, 19, 29, 32+ Reduced stress on marriage, supportive extended family– Increased marital challenges, disagreement with extended family, loss of informal caregiving* Methods to reduce marital strain
Family–world 13–16, 18, 19, 27, 29–32+ Increased freedom to go out– Social isolation of child and family, challenges for travel* Reframing staying at home as active choice
Two studies13,29 included children with gastrojejunostomy or jejunostomy tubes. + = positive; – = negative; * = adaptive.
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regarding communication. Someparents found providers to beinexperienced and unhelpful. Othersdescribed being unprepared forcomplications associated with G-tubefeeding. Many parents felt that theirexpertise was not valued byprofessionals. As adaptive strategies,parents emphasized the importanceof advocacy and talking to otherparents.
Stigma
The use of G-tubes also alteredparents’ perception of the outsideworld. Parents described the reactionof outsiders to their child’s G-tube,which represented a new “visibledisability.”Although reactions of otherchildren were perceived as friendlyand curious, parents noted frequent
negative interactions with otheradults. Studies described a variety ofparental responses to this perceivedstigma, from avoidance toconfrontation.
Family Themes
Although many themes clusteredspecifically around the child or theprimary caregiver, others includedthe entire family unit. Some familieshad more flexibility in theirschedules: “. . . [I]t has also enabled usto have more time in the day to doactivities. . . . It has lifted a great strainfrom the family. . . .”17 Other familiesaltered the feeding schedule to suittheir own needs. Many familiesreported logistical challenges due toincreased systems utilization,difficulties finding respite care
providers, new financial stresses, lossof family privacy because of in-homecaregivers, and inadequate access toservices and support. Some studiesnoted emotional benefits for familycohesion and sibling involvement, butothers identified G-tube feedings asa cause of disruption and relationaldiscord. Challenges relating tosiblings were described: “There wasspeculation that siblings get less oftheir parent’s time, suffer socialstigmatization and may be underpressure to care for their disabledsibling later in life. . . .”19 A fewstudies noted benefits forrelationships between parents orwith the extended family; morestudies found exacerbation ofdifficulties in those relationships. Oneadditional theme was the loss ofinformal caregiving by extendedfamily members who wereuncomfortable managing G-tubefeedings. Combined with thechallenges securing professionalrespite and the stigma felt in public,this outcome increased the family’sisolation. However, some familiesreframed staying at home as an activechoice: “In contrast, confronted by thedifficulties associated with creatingan acceptable respite plan, somecaregivers seemed to have takena more philosophical approach,coping by relinquishing their need fortime away from the child. As a parentexplained, “I think [child] has made ussettle down, we don’t really want togo out that much anymore. You know,we enjoy being at home.”15
DISCUSSION
The experiences of families withG-tube feedings for children withneurologic impairment are complex,affecting the child, parent, and familyunit from physical, emotional, andrelational perspectives. Parents notedsignificant benefits to children’sweight and happiness, caregiver’squality of life, and the family’sflexibility. However, there arechallenges as well: complications for
FIGURE 2Conceptual diagram of themes. The diagram illustrates the major themes and their interrelationships fromthis systematic review of 13 qualitative studies about family experiences with feeding tubes in children withneurologic impairment. G-tubes affected the lives of the child, parent, and family in many ways, as indicatedby the themes in the circles. Relationships between individuals were also affected, as indicated in theintersecting areas. Furthermore, the relationship between the members of the family and the widercommunity were also altered, as indicated in the outer shaded circle (eg, parents experienced stigma in theoutside world).
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the child, increased care needs, newstresses for the parents, and familyburdens from increased utilization ofhealth services. G-tubes also haveimplications for relationships bothwithin and outside the family unit.They change the ease and comfortwith which the child, and byextension the family, navigates lifeoutside the home. They also increasedependency in the relationshipbetween parents and health careproviders. Furthermore, based ontheir underlying values andindividual contexts, families mayframe the same issue differently;for some families, G-tube feedingmay be easier than oral feeding, butfor others, using a G-tube ismore difficult.
This study synthesized results from13 qualitative studies to providea broader understanding of the rangeof experiences among families feeding
children with neurologic impairmentby G-tube. Themes related to thechild, the parent, and the family unithave been noted in other studies onthis topic.20 Similarly, studies haveacknowledged the balance betweenpositive and negative outcomesrelated to G-tube feeding21 and thepresence of both medical andpsychosocial challenges.22,23 Thestudy’s thematic framework,particularly the child-focused aspect,is similar to the World HealthOrganization’s InternationalClassification of Functioning, Healthand Disability.24 The child’s physicalthemes correspond to “bodyfunctions and structures,” childquality of life and socialization to“activity” and “participation,” andparent/family themes to “contextualfactors.”
Understanding patient-centeredoutcomes for major medical
interventions is necessary to optimizefamily decision-making andsupport.25 The traditional biomedicalapproach, with its focus on physicalhealth outcomes, is inadequate forinterventions such as G-tubes thathave broad and ongoing implications.A clinical report from the AmericanAcademy of Pediatrics emphasizedthe complexity and the multifacetedconsiderations that are needed fordecision-making and longitudinalclinical care of nonorally fed childrenwith disabilities.26 Our study furtheradds to the report’s findings bysystematically identifying andthoroughly describing themesrelevant to the child, parent, andfamily experience (Table 3 and Fig 3)that should be part of clinicalconversations before and afterplacement of a G-tube.
Family experiences with G-tubefeedings are diverse and individual;
TABLE 5 Selected Quotes Illustrating Differing Responses to the Same Concept
Variable Benefit of G-Tube Feeding Challenge With G-Tube Feeding
Child’s level of engagement Six families described greater alertness and interaction asa result of the feeding tube. . . . Families talked about theirchildren being happier, playing more, interacting more,having enhanced environmental awareness, playing morewith siblings, being calmer, and smiling. (Author quote,Brotherson et al16)
Many caregivers thought of mealtime as a “special time” withtheir children and as a source of familial bonding.Caregivers often felt that the children’s inability to be fed bymouth caused them to feel “left out” or isolated. (Authorquote, Petersen et al30)
Time requirement [T]here was some recognition of benefits secondary to themedical aspects, such as the decreased length of feedingtimes, and consequently, more flexibility for the family.(Author quote, Rouse et al17)
“I get up every day and plug that feeding in at five o’clock.I curse every day. I just feel it’s relentless. I just feel like I’mtied to it; my whole life has changed . . . I just feel there is noescape because of the tube feeding.” (Participant quote,Thorne et al15)
Health care providerattitude
When interfacing with the health care system, parentsfrequently reported positive experiences with formal healthcare providers. (Author quote, Mahant et al29)
‘‘We were never told that we wouldn’t get much after care andthat’s been the problem. We’ve had continual problems withthe gastrostomy and nobody seems to want to know.”(Participant quote, Morrow et al18)
Visibility of G-tube tooutsiders
In response to the question of how parents and children mightbenefit from a gastrostomy, mothers of children withnasogastric tubes sometimes spoke of the highly visible andstigmatizing effects which attracted unwanted publicattention. The view that a gastrostomy would be hidden, andtherefore represented a more discreet form of feeding, was seenas an advantage of the procedure. (Author quote Craig et al28)
A related aspect of normalcy for families was the increasedvisibility of their child’s disability as a result of havinga “tube hanging out of this little kid’s body.” The visibility ofa health problem was qualitatively different than thevisibility of disability for some families. These parentsseemed to feel that the device made their child “less human”or “subhuman” (Author quote, Brotherson et al16)
Impact on siblings “We’ve got 5 other children and they think it’s really cool. Whentheir friends come over from school or new friends comeover they always show them the tubes and buttons. . .”(Participant quote, Cooper13)
“Siblings had roles in caregiving, such as with tube feeding.The needs of their disabled sibling were seen to limit otheractivities (eg, recreation, time with parents) . . . ” (Authorquote, Mahant et al29)
Impact on familysocialization
“Feeding through the tube has really helped us, you know.I must say that it has opened a lot of doors for us going out,and being much more flexible, and it’s not a drag anymore.”(Participant quote, Thorne et al14)
This may cause a distancing from the children resulting inthem being left out. Visits to friends and family may berestricted because of difficult access, the child’s feedingroutine not fitting in with other people’s lives, and theparticipant not having found a way of giving feeds that wascomfortable for everyone . . . (Author quote, Sleigh27)
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the present article does not allowprediction of which positive andnegative outcomes a specific familywill experience. However, inconversations with health careproviders, families may be able toreflect on how the themes applywithin their own family context. For
example, many study familiesreported challenges with informalcaregiving from their extendedfamily after G-tube placement.Knowing this fact, a familyconsidering a G-tube might thinkabout their own extended family, andpredicting the response to theG-tube, they could develop strategiesto increase comfort with the G-tubeor find contingency plans for care.Figure 3 depicts some topics thatmay be useful to discuss withfamilies before G-tube placement. Asmany of the studies in this reviewdescribe, families often use adaptivestrategies to lessen negativeoutcomes. By exploring the family’scontext and expectations, health careproviders may be able to helpfamilies anticipate some of thepotential challenges, and possiblydevelop adaptive strategies, beforethe G-tube is placed. Similarly, these
same themes can be a starting pointfor conversations about the familyexperience longitudinally afterG-tube placement to identify areasneeding additional support.
The findings of the present studymust be understood in the context ofseveral important limitations. First,the participants in the originalstudies do not necessarily representthe breadth of all familyexperiences, given the demographic,geographic, and temporallimitations of those studies. Thisreview did not include non–English-language studies, and we thereforecannot comment on the experiencesof non–English-speaking families.However, the studies includedfamilies from 4 countries on 3continents with a variety ofinsurance plans. Second, theindication for G-tube placement(eg, weight gain or aspiration) mightinfluence family perceptions;because most studies did not reportthis information, we were unable toassess for any thematic associations.Third, although the conversationspredominantly focused on G-tubes, 2studies included gastrojejunostomyor jejunostomy tubes, which may beassociated with different outcomes,particularly related to caregiverburden. Furthermore, some familiesdiscussed preoperative experienceswith nasogastric tubes, which mayinfluence their perception ofcomparative benefits and burdens ofG-tubes. In addition, some of thesubthemes, especially those withinthe parental stress andparent–medical systems themes,may represent the experiences ofcaring for children with significantdisabilities more than experiencesdirectly caused by G-tubeplacement. Finally, given the designsof the source studies, it is difficult toquantify the relative frequency ofoutcomes and experiences, whichmay result in overemphasis ofuncommon experiences. Althoughthis review presents positive andnegative aspects of feeding as
TABLE 6 Quotes Illustrating Parental Themes
Theme Quote
Caregiving Although they had been prepared to execute the technical skills involved in[gastrostomy] tube feeding, they had not been prepared for thetremendous changes it would necessitate in their daily lives.[Gastrostomy] tube feeding was very time consuming and mothers’activities continued to revolve around the children’s feeding schedules.(Author quote, Spalding et al31)
Stress In addition, in eliminating the horrible episodes in which parents werefaced with thoughts of “What if my child dies?” the gastrostomy raisedthe new and different specter of “What if my child lives?” In contrast tothe uncertain and tenuous hold on life that the child may have had ina malnourished state, the gastrostomy fed child now seemed physicallystrong enough to live in this debilitated state indefinitely. (Author quote,Thorne et al14)
Parent–child relationship “It was the most horrific, outdated, terrible thing to put in a child. It was anawful looking thing and most awful thing to deal with that we ever, everexperienced in our lives. It changed our lives. It had such an impact, itwas so permanent for her, it was a hole in her, it was like this gapinghole in her abdomen. I mean, the way I had to touch her, treat her, andposition her changed. Everything changed for us.” (Participant quote,Spalding et al31)
Parent–medical system However, the other family did not appear to experience similar benefits,reporting little increase in ease of feeding. This was compounded byboth lack of information prior to the operation and lack of home caresupport after the operation: “. . .[A]ll the problems she’s having now,I didn’t expect that . . .. I think you expect everything to be all right now.”(Author and participant quote, Rouse et al17)
Parent–outside world Many caregivers recalled using children’s curiosity as an opportunity toexplain about gastrostomy. As one parent recalled, “We have somechildren looking at the pump and asking what it’s about, and we tellthem. We show them where the hole is in [child]’s stomach and saywhen she eats like you do, she gets very sick.” (Author and participantquote, Thorne et al15)
FIGURE 3Issues to explore with families regarding G-tubes.
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relatively balanced, it is not clearthat an individual family would beequally likely to experience both.
CONCLUSIONS
This systematic review of 13qualitative studies provides anoverview of family experiences andcan serve as the starting point forconversations with familiesregarding G-tube placement inchildren with neurologicimpairment. Previous studies have
shown that families find decisionsregarding G-tubes difficult,5 andincorporation of these themes intodiscussions may be helpful inreducing family distress arounddecisions and improving supportafter placement. Because theimplications of G-tube introductionare extensive, the creation of formaldecision aids, which describepotential risks and benefitsassociated with procedures toimprove decision-makers’
understanding and elicit their values,may also be useful.
ACKNOWLEDGMENT
The authors thank Elizabeth M.Uleryk, BA, MLS, for her assistancewith creation of the search strategy.
ABBREVIATION
G-tube: gastrostomy tube
Address correspondence to Katherine E. Nelson, MD, Hospital for Sick Children, 555 University Ave, Toronto, ON, Canada M5G1X8. E-mail: [email protected]
PEDIATRICS (ISSN Numbers: Print, 0031-4005; Online, 1098-4275).
Copyright © 2015 by the American Academy of Pediatrics
FINANCIAL DISCLOSURE: The authors have indicated they have no financial relationships relevant to this article to disclose.
FUNDING: Supported by a Janis Rotman Fellowship in Home Care Innovation, Hospital for Sick Children. Dr Nelson is supported through the Clinician Scientist
Training Program and Ms Lacombe-Duncan through the Norman Saunders Complex Care Initiative, both from the Hospital for Sick Children. Dr Guttmann is
supported by a Canadian Institutes of Health Research Applied Chair in Child Health Services and Policy Research.
POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose.
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Laura C. Rosella, Astrid Guttmann and Sanjay MahantKatherine E. Nelson, Ashley Lacombe-Duncan, Eyal Cohen, David B. Nicholas,
Systematic ReviewFamily Experiences With Feeding Tubes in Neurologic Impairment: A
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