Family Experiences With Feeding Tubes in Neurologic Impairment: A Systematic Review
- Katherine 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, and
- Sanjay Mahant, MD, MScb,c,f
- aPaediatric Advanced Care Team and
- bDivision of Paediatric Medicine, Department of Paediatrics, Hospital for Sick 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 Childhood Disability Research, Hamilton, Ontario, Canada; and
- gDepartment of Social Work, University of Calgary, Calgary, Alberta, Canada
BACKGROUND AND OBJECTIVE: Gastrostomy tubes (G-tubes) are frequently used to provide enteral nutrition for children who have neurologic impairment. Understanding the impact of G-tubes from the family’s perspective will inform decision-making and improve support from health care providers. This study explored the experiences of families after G-tube placement in children with neurologic impairment.
METHODS: We conducted a systematic review of English-language qualitative primary research studies describing family experiences after G-tube placement. Six electronic databases were searched from inception to June 2014. Two authors independently screened and identified relevant studies, evaluated quality of reporting by using the Consolidated Criteria for Reporting Qualitative Research tool, and extracted data. Overarching concepts were developed by using thematic analysis.
RESULTS: From 2674 screened abstracts, 84 texts were reviewed, and 13 studies met the inclusion criteria. G-tubes affect the lives of children, parents, and the family unit in many ways, both positive and negative. Improvements and challenges were described for children’s health and happiness, for parental caregiving and stress, and for logistics and bonding within the family. G-tube feeding also changed relationships within the family, between the family and the medical system, and between the family and the outside world. Furthermore, experiences varied, with different families framing similar concepts as positive and negative.
CONCLUSIONS: G-tube placement has diverse effects on daily life for children with neurologic impairment and their families. Clinicians may use the themes identified in this study to guide conversations with families about their values, experiences, and expectations before and after G-tube placement.
- G-tube —
- gastrostomy tube
What’s Known on This Subject:
Gastrostomy tube placement is a difficult decision for families of children with neurologic impairment. Better understanding the impact of these tubes on the lives of children and families will help improve decision-making and support from health care providers.
What This Study Adds:
Gastrostomy tube placement has broad-reaching implications for children and their families. There are physical, emotional, and relational challenges and benefits for the child, the parents, and the family unit. Exploring potential outcomes with families may improve decision-making conversations and support.
Gastrostomy tubes (G-tubes) are a common assistive technology used for children with neurologic impairment, especially among children with severe impairments.1 G-tubes allow nutrition to be provided directly into the stomach and are typically placed to mitigate nutritional or respiratory complications of swallowing dysfunction.2–4 Given the symbolic significance of feeding as a parental duty5 and the impact of this intervention on the child’s daily life,6 decisions regarding the placement of a G-tube are often complex. Many clinical practice guidelines recommend G-tube feeding largely based on evidence demonstrating its effectiveness on nutritional outcomes2,3,7 without a comprehensive understanding of the patient-centered outcomes that are critical for family decision-making.
Previous studies have shown that families of children with neurologic impairment often feel they receive inadequate information during the decision-making process.5 Research about shared decision-making has found that adequacy of information is a potentially modifiable component that can decrease decisional conflict among patients and families.8 Furthermore, the same themes can be revisited after the procedure to enhance family support.9 The present study synthesized evidence from qualitative studies regarding experiences of families after G-tube placement for children with neurologic impairment; the goal was to identify themes that can guide clinician conversations with families before and after placement of a G-tube.
Using established methods for conducting a meta-synthesis (a systematic review of qualitative research),10 we selected primary qualitative studies that explored the experiences of children with neurologic impairment who were receiving G-tube feedings and their families. To be eligible for inclusion, more than one-half of the sample in a given study had to be children with surgically placed enteral feeding tubes. Studies had to present qualitative data from focus groups or interviews with parents, primary caregivers, or health care professionals. Studies in which fewer than one-half of the children had a primary diagnosis consistent with neurologic impairment were also excluded. To ensure clear understanding of the nuances in participant and author quotations, studies published in a language other than English were excluded.
In consultation with a medical librarian, search strategies were created for 6 databases (Ovid, Embase, EBM Reviews–Cochrane Database of Systematic Reviews, EBM Reviews–Health Technology Assessment, PsycINFO, and CINAHL) from inception to June 2014. Search terms included “enteral nutrition,” “quality of life,” “pediatrics,” and their synonyms (Supplemental Appendix 1). Two investigators (K.E.N. and A.L.-D.) separately evaluated the abstracts for inclusion, and disagreements on classification were resolved through discussion. Snowballing techniques were used to expand the search, which included evaluating the reference lists of identified studies, citation tracking of identified studies, and review of personal files for other relevant studies.
Quality of Reporting
The quality of the reporting for included studies was evaluated by using an established reporting tool.11 The Consolidated Criteria for Reporting Qualitative Research checklist includes 32 items used to evaluate a text for inclusion of components within 3 categories: “research team and reflexivity,” “study design,” and “analysis and findings.” Because there is no evidence to suggest that quality of reporting accurately reflects quality of data, we did not modify or weight analysis of the studies based on the quality of reporting.
Data Analysis and Synthesis
Thematic analysis, an established iterative process, was used.12 Two investigators (K.E.N. and A.L.-D.) independently coded the text of each primary study line-by-line. Emerging descriptive themes within each study were developed by the primary research team (K.E.N., A.L.-D., and S.M.) as the texts were read and reread. All themes were determined iteratively during the analysis process rather than a priori. We extracted participant and author quotations illustrating descriptive themes and explored the nuances in how different studies addressed each theme. By synthesizing the descriptive themes across all of the texts, overarching analytic themes were generated to better describe the major issues discussed by families regarding life after G-tube placement.
Study Selection and Quality of Reporting
The search identified 2674 citations (Fig 1). From the citation lists, 84 potentially relevant full texts were reviewed, and 11 studies met inclusion criteria. Snowballing techniques yielded 2 articles, for a total of 13 included studies. Table 1 describes the characteristics of the included studies, and Table 2 lists the reported information about study participants. A majority of participants (84%) resided in countries with universal health coverage; minimal demographic information was available for family participants. Families of 14 children (7.1%) were interviewed before G-tube placement; from those 3 studies, only quotations related to G-tube feeding were used in the thematic analysis. Nine patients (4.6%) with gastrojejunostomy or jejunostomy tubes were part of 2 studies; any quotes relevant to surgically placed feeding tubes were included. Studies that included the insights of health care professionals on the experiences of their patients and families were analyzed as well. Table 3 presents quality of reporting results as measured by using the Consolidated Criteria for Reporting Qualitative Research checklist.11 The mean number included was 18.7 items out of the possible 32 items on the checklist (59%). Individual scores ranged from 13 to 25, suggesting significant variation in the quality of reporting among the studies.
The studies described many outcomes after G-tube placement for children, parents, and the family. These outcomes included concrete concepts: changes in the child’s physical health, changes in parental caregiving, and logistical implications for the family. They also described less tangible emotional themes regarding the child’s quality of life, the parents’ stress level, and family bonding. In addition, there were themes about relationships, both within the family and between family members and outsiders. Table 4 lists themes and subthemes, and depicts which studies included each theme. Figure 2 displays the interrelationships between the themes, and Supplemental Appendix 2 lists subthemes according to study.
All of the themes had related benefits and challenges. However, the same outcome could be framed positively by some participants and negatively by others, illustrating how differences in values and context influence perception. For example, a participant commented, “The weight gain has been tremendous, if she didn’t have the button she’d fade away.”13 Conversely, a different parent asked, “If you have somebody that hasn't been able to grow, and you can suddenly make them grow, do you make them grow out of the capacity of the caregiver to lift them? . . . Is growth always good?”14 Table 5 includes quotes about other concepts with varying interpretations.
The studies described positive physical benefits for the child that were associated with G-tube feeding. These benefits included weight gain, improved respiratory status, and an assured route for provision of fluids and medications. However, families and health care providers also noted challenges associated with G-tube feeding, such as gastrointestinal and respiratory complications and difficulties with the tube (eg, tube blockage and dislodgement). One study reported techniques that families have developed to minimize physical negative effects.15
Quality of Life
Families discussed significant improvements in quality of life after G-tube placement, as illustrated in this quote: “. . . the unforeseen benefits were amazing to us. In a week, he was healthier and happier. . . . We were able to shift our focus from just surviving to other things.”16 However, a theme noted in 9 studies was the negative impact on quality of life related to discontinuation of eating by mouth. As a mother said, “I was really upset she stopped having her food because that was the one thing she did enjoy. I mean she hasn’t got much of a life and that was taken away as well.”17 The adaptive subthemes centered on minimization of this loss, either by continued oral feeding or by reframing it as something the child did not miss. Many of the interviewed families described continuing to offer tastes of food, some without knowledge of or against recommendations of their health care team. However, other families found that their child was no longer interested in food: “But it shocked me no end that she has chosen that she doesn’t want to eat anymore. And what I thought was enjoyment was necessity I’m sure now.”18
Some families described how their child’s improved alertness led to more interaction. Other families and health care providers worried that oral feeding had been a major source of interaction, which was lost with G-tube feedings. In addition, feeding equipment decreased the child’s mobility, which limited the child’s ability to participate in activities. Some families reported deliberately maximizing their child’s socialization during nonfeeding-related activities.
Table 6 lists quotes specifically related to parental experiences.
Caregiving and Stress
Some parents reported that G-tube feedings eased caregiving burdens, but many described increased intensity of care needs, decreased parental sleep, and other practical challenges associated with G-tube feeding. Several caregivers reported that their own quality of life improved after G-tube placement. Other parents developed new worries about their children’s fragile health status and also that the G-tube might cause prolongation of a life with poor quality. In addition, some parents found that their identities had been subsumed by their role as caregiver. Strategies to mitigate parental stress focused on methods that the parents used to maintain personal time.
Many parents described feeding as a parental duty and that G-tube feeding, which did not have the same emotional component as oral feeding, forced them to redefine their role as parents. They characterized the G-tube as unnatural and as representing a loss of normality, both in the parent–child relationship and for the child. The language used by some parents to describe the tube and feeding by tube (eg, “necessary evil,” “ghastly,” “mutilation,” “horrific”) revealed the intensity of emotions they felt related to this decision. In contrast, other parents found that by reducing the frustration associated with oral feeding, tube feeding improved their relationship with their children. In addition, some parents reported using what was really important to redefine their relationship with their children: “We’re parents . . . and we’re going to do absolutely everything we possibly can to make their life as pleasurable and as comfortable as we possibly can. . . .”18
Many studies mentioned changes in the relationship between parents and the medical system. Some parents reported positive experiences and good support. Other parents described their increased dependence on the system as frustrating and fraught with challenges, particularly regarding communication. Some parents found providers to be inexperienced and unhelpful. Others described being unprepared for complications associated with G-tube feeding. Many parents felt that their expertise was not valued by professionals. As adaptive strategies, parents emphasized the importance of advocacy and talking to other parents.
The use of G-tubes also altered parents’ perception of the outside world. Parents described the reaction of outsiders to their child’s G-tube, which represented a new “visible disability.” Although reactions of other children were perceived as friendly and curious, parents noted frequent negative interactions with other adults. Studies described a variety of parental responses to this perceived stigma, from avoidance to confrontation.
Although many themes clustered specifically around the child or the primary caregiver, others included the entire family unit. Some families had more flexibility in their schedules: “. . . [I]t has also enabled us to have more time in the day to do activities. . . . It has lifted a great strain from the family. . . .”17 Other families altered the feeding schedule to suit their own needs. Many families reported logistical challenges due to increased systems utilization, difficulties finding respite care providers, new financial stresses, loss of family privacy because of in-home caregivers, and inadequate access to services and support. Some studies noted emotional benefits for family cohesion and sibling involvement, but others identified G-tube feedings as a cause of disruption and relational discord. Challenges relating to siblings were described: “There was speculation that siblings get less of their parent’s time, suffer social stigmatization and may be under pressure to care for their disabled sibling later in life. . . .”19 A few studies noted benefits for relationships between parents or with the extended family; more studies found exacerbation of difficulties in those relationships. One additional theme was the loss of informal caregiving by extended family members who were uncomfortable managing G-tube feedings. Combined with the challenges securing professional respite and the stigma felt in public, this outcome increased the family’s isolation. However, some families reframed staying at home as an active choice: “In contrast, confronted by the difficulties associated with creating an acceptable respite plan, some caregivers seemed to have taken a more philosophical approach, coping by relinquishing their need for time away from the child. As a parent explained, “I think [child] has made us settle down, we don't really want to go out that much anymore. You know, we enjoy being at home.”15
The experiences of families with G-tube feedings for children with neurologic impairment are complex, affecting the child, parent, and family unit from physical, emotional, and relational perspectives. Parents noted significant benefits to children’s weight and happiness, caregiver’s quality of life, and the family’s flexibility. However, there are challenges as well: complications for the child, increased care needs, new stresses for the parents, and family burdens from increased utilization of health services. G-tubes also have implications for relationships both within and outside the family unit. They change the ease and comfort with which the child, and by extension the family, navigates life outside the home. They also increase dependency in the relationship between parents and health care providers. Furthermore, based on their underlying values and individual contexts, families may frame the same issue differently; for some families, G-tube feeding may be easier than oral feeding, but for others, using a G-tube is more difficult.
This study synthesized results from 13 qualitative studies to provide a broader understanding of the range of experiences among families feeding children with neurologic impairment by G-tube. Themes related to the child, the parent, and the family unit have been noted in other studies on this topic.20 Similarly, studies have acknowledged the balance between positive and negative outcomes related to G-tube feeding21 and the presence of both medical and psychosocial challenges.22,23 The study's thematic framework, particularly the child-focused aspect, is similar to the World Health Organization’s International Classification of Functioning, Health and Disability.24 The child’s physical themes correspond to “body functions and structures,” child quality of life and socialization to “activity” and “participation,” and parent/family themes to “contextual factors.”
Understanding patient-centered outcomes for major medical interventions is necessary to optimize family decision-making and support.25 The traditional biomedical approach, with its focus on physical health outcomes, is inadequate for interventions such as G-tubes that have broad and ongoing implications. A clinical report from the American Academy of Pediatrics emphasized the complexity and the multifaceted considerations that are needed for decision-making and longitudinal clinical care of nonorally fed children with disabilities.26 Our study further adds to the report’s findings by systematically identifying and thoroughly describing themes relevant to the child, parent, and family experience (Table 3 and Fig 3) that should be part of clinical conversations before and after placement of a G-tube.
Family experiences with G-tube feedings are diverse and individual; the present article does not allow prediction of which positive and negative outcomes a specific family will experience. However, in conversations with health care providers, families may be able to reflect on how the themes apply within their own family context. For example, many study families reported challenges with informal caregiving from their extended family after G-tube placement. Knowing this fact, a family considering a G-tube might think about their own extended family, and predicting the response to the G-tube, they could develop strategies to increase comfort with the G-tube or find contingency plans for care. Figure 3 depicts some topics that may be useful to discuss with families before G-tube placement. As many of the studies in this review describe, families often use adaptive strategies to lessen negative outcomes. By exploring the family’s context and expectations, health care providers may be able to help families anticipate some of the potential challenges, and possibly develop adaptive strategies, before the G-tube is placed. Similarly, these same themes can be a starting point for conversations about the family experience longitudinally after G-tube placement to identify areas needing additional support.
The findings of the present study must be understood in the context of several important limitations. First, the participants in the original studies do not necessarily represent the breadth of all family experiences, given the demographic, geographic, and temporal limitations of those studies. This review did not include non–English-language studies, and we therefore cannot comment on the experiences of non–English-speaking families. However, the studies included families from 4 countries on 3 continents with a variety of insurance plans. Second, the indication for G-tube placement (eg, weight gain or aspiration) might influence family perceptions; because most studies did not report this information, we were unable to assess for any thematic associations. Third, although the conversations predominantly focused on G-tubes, 2 studies included gastrojejunostomy or jejunostomy tubes, which may be associated with different outcomes, particularly related to caregiver burden. Furthermore, some families discussed preoperative experiences with nasogastric tubes, which may influence their perception of comparative benefits and burdens of G-tubes. In addition, some of the subthemes, especially those within the parental stress and parent–medical systems themes, may represent the experiences of caring for children with significant disabilities more than experiences directly caused by G-tube placement. Finally, given the designs of the source studies, it is difficult to quantify the relative frequency of outcomes and experiences, which may result in overemphasis of uncommon experiences. Although this review presents positive and negative aspects of feeding as relatively balanced, it is not clear that an individual family would be equally likely to experience both.
This systematic review of 13 qualitative studies provides an overview of family experiences and can serve as the starting point for conversations with families regarding G-tube placement in children with neurologic impairment. Previous studies have shown that families find decisions regarding G-tubes difficult,5 and incorporation of these themes into discussions may be helpful in reducing family distress around decisions and improving support after placement. Because the implications of G-tube introduction are extensive, the creation of formal decision aids, which describe potential risks and benefits associated with procedures to improve decision-makers’ understanding and elicit their values, may also be useful.
The authors thank Elizabeth M. Uleryk, BA, MLS, for her assistance with creation of the search strategy.
- Accepted April 15, 2015.
- Address correspondence to Katherine E. Nelson, MD, Hospital for Sick Children, 555 University Ave, Toronto, ON, Canada M5G1X8. E-mail:
Dr Nelson participated in study design, collected data, collaborated on the thematic analysis, and drafted the initial manuscript; Ms Lacombe-Duncan collected data, collaborated on the thematic analysis, and reviewed and revised the manuscript; Drs Cohen, Nicholas, Rosella, and Guttmann participated in study design and reviewed and revised the manuscript; Dr Mahant conceptualized the study, participated in study design, supervised data collection, collaborated on the thematic analysis, and reviewed and revised the manuscript; and all authors approved the final manuscript as submitted.
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.
- Copyright © 2015 by the American Academy of Pediatrics