family experiences with feeding tubes in neurologic impairment: … · overarching concepts were...

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 March 18, 2020www.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.

PEDIATRICS Volume 136, number 1, July 2015 e141 by guest on March 18, 2020www.aappublications.org/newsDownloaded from

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)


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)


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)


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

e142 NELSON et al by guest on March 18, 2020www.aappublications.org/newsDownloaded from

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)


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.


http://pediatrics.aappublications.org/lookup/suppl/doi:10.1542/peds.2014-4162/-/DCSupplemental

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.




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


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.


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).


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)


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.


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.

REFERENCES

1. Cohen E, Berry JG, Camacho X, AndersonG, Wodchis W, Guttmann A. Patterns andcosts of health care use of children withmedical complexity. Pediatrics. 2012;130(6). Available at: www.pediatrics.org/cgi/content/full/130/6/e1463

2. Marchand V; Canadian PaediatricSociety, Nutrition and GastroenterologyCommittee. Nutrition in neurologicallyimpaired children. Paediatr Child Health.2009;14(6):395–401

3. Marchand V, Motil KJ; NASPGHANCommittee on Nutrition. Nutritionsupport for neurologically impairedchildren: a clinical report of the NorthAmerican Society for PediatricGastroenterology, Hepatology, andNutrition. J Pediatr Gastroenterol Nutr.2006;43(1):123–135

4. Sullivan PB, Lambert B, Rose M, Ford-Adams M, Johnson A, Griffiths P.Prevalence and severity of feeding andnutritional problems in children withneurological impairment: Oxford FeedingStudy. Dev Med Child Neurol. 2000;42(10):674–680

5. Mahant S, Jovcevska V, Cohen E.Decision-making around gastrostomy-

feeding in children with neurologicdisabilities. Pediatrics. 2011;127(6).Available at: www.pediatrics.org/cgi/content/full/127/6/e1471

6. Mahant S, Friedman JN, Connolly B, GoiaC, Macarthur C. Tube feeding and qualityof life in children with severeneurological impairment. Arch Dis Child.2009;94(9):668–673

7. Ferluga ED, Sathe NA, Krishnaswami S,Mcpheeters ML. Surgical intervention forfeeding and nutrition difficulties incerebral palsy: a systematic review.Dev Med Child Neurol. 2014;56(1):31–43

8. LeBlanc A, Kenny DA, O’Connor AM,Légaré F. Decisional conflict in patientsand their physicians: a dyadic approachto shared decision making. Med DecisMaking. 2009;29(1):61–68

9. Montori VM, Gafni A, Charles C. A sharedtreatment decision-making approachbetween patients with chronicconditions and their clinicians: the caseof diabetes. Health Expect. 2006;9(1):25–36

10. Atkins S, Lewin S, Smith H, Engel M,Fretheim A, Volmink J. Conductinga meta-ethnography of qualitative

literature: lessons learnt. BMC Med ResMethodol. 2008;8(1):21

11. Tong A, Sainsbury P, Craig J.Consolidated criteria for reportingqualitative research (COREQ): a 32-itemchecklist for interviews and focusgroups. Int J Qual Health Care. 2007;19(6):349–357

12. Thomas J, Harden A. Methods for thethematic synthesis of qualitativeresearch in systematic reviews. BMCMed Res Methodol. 2008;8:45

13. Cooper B. Family caregiver perspectiveson management of long-term homeenteral nutrition via a gastrostomy tube.J GENCA. 2008;18(2):17–24

14. Thorne SE, Radford MJ, McCormick J.The multiple meanings of long-termgastrostomy in children with severedisability. J Pediatr Nurs. 1997;12(2):89–99

15. Thorne SE, Radford MJ, Armstrong EA.Long-term gastrostomy in children:caregiver coping. Gastroenterol Nurs.1997;20(2):46–53

16. Brotherson M, Oakland M, Secrist-MertzC, et al. Quality of life issues for familieswho make the decision to use a feeding


mailto:[email protected]

http://www.pediatrics.org/cgi/content/full/130/6/e1463




tube for their child with disabilities.J Assoc Pers Sev Handicaps. 1995;20(3):202–212

17. Rouse L, Herrington P, Assey J, Baker R,Golden S. Feeding problems,gastrostomy and families: a qualitativepilot study. Br J Learn Disabil. 2002;30(3):122–128

18. Morrow AM, Quine S, Loughlin EV, CraigJC. Different priorities: a comparison ofparents’ and health professionals’perceptions of quality of life inquadriplegic cerebral palsy. Arch DisChild. 2008;93(2):119–125

19. Morrow AM, Quine S, Craig JC. Healthprofessionals’ perceptions of feeding-related quality of life in children withquadriplegic cerebral palsy. Child CareHealth Dev. 2007;33(5):529–538

20. Calderón C, Gómez-López L, Martínez-Costa C, Borraz S, Moreno-Villares JM,Pedrón-Giner C. Feeling of burden,psychological distress, and anxietyamong primary caregivers of childrenwith home enteral nutrition. J PediatrPsychol. 2011;36(2):188–195

21. Darwish H. Living with cerebral palsyand tube feeding: easier to feed but atwhat cost? J Pediatr. 1999;135(3):272–273

22. Enrione EB, Thomlison B, Rubin A.Medical and psychosocial experiences offamily caregivers with children fedenterally at home. JPEN J ParenterEnteral Nutr. 2005;29(6):413–419

23. Michaelis CA, Warzak WJ, Stanek K, VanRiper C. Parental and professionalperceptions of problems associated withlong-term pediatric home tube feeding.J Am Diet Assoc. 1992;92(10):1235–1238

24. Rosenbaum P, Stewart D. The WorldHealth Organization InternationalClassification of Functioning, Disability,and Health: a model to guide clinicalthinking, practice and research in thefield of cerebral palsy. Semin PediatrNeurol. 2004;11(1):5–10

25. Krumholz HM. Real-world imperative ofoutcomes research. JAMA. 2011;306(7):754–755

26. Adams RC, Elias ER; Council on Childrenwith Disabilities. Nonoral feeding forchildren and youth with developmentalor acquired disabilities. Pediatrics. 2014;134(6). Available at: www.pediatrics.org/cgi/content/full/134/6/e1745

27. Sleigh G. Mothers’ voice: a qualitativestudy on feeding children with cerebralpalsy. Child Care Health Dev. 2005;31(4):373–383

28. Craig GM, Scambler G. Negotiatingmothering against the odds:gastrostomy tube feeding, stigma,governmentality and disabledchildren. Soc Sci Med. 2006;62(5):1115–1125

29. Mahant S, Pastor AC, Deoliveira L,Nicholas DB, Langer JC. Well-being ofchildren with neurologic impairmentafter fundoplication andgastrojejunostomy tube feeding.Pediatrics. 2011;128(2). Available at:www.pediatrics.org/cgi/content/full/128/2/e395

30. Petersen MC, Kedia S, Davis P, Newman L,Temple C. Eating and feeding are not thesame: caregivers’ perceptions ofgastrostomy feeding for children withcerebral palsy. Dev Med Child Neurol.2006;48(9):713–717

31. Spalding K, McKeever P. Mothers’experiences caring for children withdisabilities who require a gastrostomytube. J Pediatr Nurs. 1998;13(4):234–243

32. Brotherton AM, Abbott J, Aggett PJ. Theimpact of percutaneous endoscopicgastrostomy feeding in children; theparental perspective. Child Care HealthDev. 2007;33(5):539–546






DOI: 10.1542/peds.2014-4162 originally published online June 29, 2015; 2015;136;e140Pediatrics

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

ServicesUpdated Information &

http://pediatrics.aappublications.org/content/136/1/e140including high resolution figures, can be found at:

Referenceshttp://pediatrics.aappublications.org/content/136/1/e140#BIBLThis article cites 31 articles, 5 of which you can access for free at:

Subspecialty Collections

subhttp://www.aappublications.org/cgi/collection/neurologic_disorders_Neurologic Disordershttp://www.aappublications.org/cgi/collection/neurology_subNeurologyhttp://www.aappublications.org/cgi/collection/disabilities_subChildren With Special Health Care Needsfollowing collection(s): This article, along with others on similar topics, appears in the

Permissions & Licensing

http://www.aappublications.org/site/misc/Permissions.xhtmlin its entirety can be found online at: Information about reproducing this article in parts (figures, tables) or

Reprintshttp://www.aappublications.org/site/misc/reprints.xhtmlInformation about ordering reprints can be found online:

by guest on March 18, 2020www.aappublications.org/newsDownloaded from

http://http://pediatrics.aappublications.org/content/136/1/e140

http://pediatrics.aappublications.org/content/136/1/e140#BIBL

http://www.aappublications.org/cgi/collection/disabilities_sub

http://www.aappublications.org/cgi/collection/neurology_sub

http://www.aappublications.org/cgi/collection/neurologic_disorders_sub

http://www.aappublications.org/cgi/collection/neurologic_disorders_sub

http://www.aappublications.org/site/misc/Permissions.xhtml

http://www.aappublications.org/site/misc/reprints.xhtml

DOI: 10.1542/peds.2014-4162 originally published online June 29, 2015; 2015;136;e140Pediatrics

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

http://pediatrics.aappublications.org/content/136/1/e140located on the World Wide Web at:

The online version of this article, along with updated information and services, is

http://pediatrics.aappublications.org/content/suppl/2015/06/23/peds.2014-4162.DCSupplementalData Supplement at:

ISSN: 1073-0397. 60007. Copyright © 2015 by the American Academy of Pediatrics. All rights reserved. Print the American Academy of Pediatrics, 141 Northwest Point Boulevard, Elk Grove Village, Illinois,has been published continuously since 1948. Pediatrics is owned, published, and trademarked by Pediatrics is the official journal of the American Academy of Pediatrics. A monthly publication, it

by guest on March 18, 2020www.aappublications.org/newsDownloaded from

http://pediatrics.aappublications.org/content/136/1/e140

http://pediatrics.aappublications.org/content/suppl/2015/06/23/peds.2014-4162.DCSupplemental

family experiences with feeding tubes in neurologic impairment: … · overarching concepts were...

Documents