Parents’ Perceptions of Gastrostomy Feeding for Children With Neurological Disabilities

Matuszczak, Ewa; Hermanowicz, Adam; Kłęk, Stanisław; Komarowska, Marta; Pawlowska, Dorota; Zoubek-Wójcik, Agata; Rysz-Bracha, Agata; Marcinkowska, Agnieszka; Milewski, Robert; Dębek, Wojciech

doi:10.1097/njh.0000000000000113

Cited by 5 publications

(10 citation statements)

References 19 publications

(21 reference statements)

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“…Prior studies have shown that caregivers are satisfied with gastrostomy tube feeding in children. 31 However, caregiver perspectives about gastrostomy tubes 12 are distinguishable from, and may be less positive on balance than, the perspectives about tracheostomy that we found in our study. This may be, in part, because gastrostomy tubes compromise oral feeding, which has great social and cultural significance for parents, whereas the effect of the tracheostomy on vocalization, which was mentioned by some caregivers in our study, may not be as troubling.…”

Section: Discussioncontrasting

confidence: 79%

Caregiver Perceptions about their Decision to Pursue Tracheostomy for Children with Medical Complexity

Nageswaran

Golden

Gower

et al. 2018

The Journal of Pediatrics

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Section: Discussioncontrasting

confidence: 79%

Caregiver Perceptions about their Decision to Pursue Tracheostomy for Children with Medical Complexity

Nageswaran

Golden

Gower

et al. 2018

The Journal of Pediatrics

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“…Occupational therapists interface with children who have feeding disorders in many areas of practice (Marcus & Breton, 2013). They often participate on feeding teams, addressing the multiple dimensions of feeding a child with a disability, including the role of the parent in this interaction (Howe & Wang, 2013;Matuszczak et al, 2014). To date, there has been only one study examining the experience of enteral feedings by families from an occupational therapy perspective (Franklin & Rodger, 2003).…”

Section: Introductionmentioning

confidence: 99%

Enteral feeding and its impact on family mealtime routines for caregivers of children with cerebral palsy: A mixed method study

Russell

Jewell

Poskey

et al. 2017

Aus Occup Therapy J

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Background/aim Enteral feedings are part of the daily mealtime experience for many caregivers of children with cerebral palsy. The scope of occupational therapy practice incorporates multiple aspects of the enteral feeding process. Yet, the research in this area is very limited. The purpose of this study was to provide practitioners with better understanding of the impact enteral feedings of children with cerebral palsy have on family mealtime routines. Methods Using a complimentary mixed method approach, data were obtained through an online survey containing the Satisfaction Questionnaire with Gastrostomy Feeding (SAGA‐8) and supplementary questions, and qualitative semi‐structured phone interviews. Participants were caregivers of children with cerebral palsy who receive their primary nutrition through a gastrostomy tube. Results This study's cohort consisted of n = 36, SAGA‐8, and n = 6 in‐depth interviews. The mean age of children of was 9.4 (6.94 SD) with a mean age of 3.4 (5.35 SD) when enteral feeding was introduced. While families' overall situations positively changed after the gastronomy tube placement, environmental barriers and length of feeding time continued to present a challenge to mealtime routines. The mixed methods data analysis revealed that successful adjustment to having a child with a gastronomy tube and problem solving are closely linked and a consistent part of mealtime experience. Conclusion Findings highlighted the necessity of comprehensive support from health professionals in achieving positive mealtime experience. Themes in this study indicated that caregivers would benefit from a professional with knowledge in the development and integration of rituals and routines to support positive outcomes.

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“…In one of the studies, 44% of the parents expressed that they were not adequately prepared for gastrostomy tube placement whereas 86% of the parents stated that they felt prepared and received adequate post-procedural education on the use of device (14). In another study, although nearly all the caregivers (95.4%) reported significant improvements in their social functions after the placement of G-Tube, the remaining 4.6% of the participants considered G-Tube as an additional disability and gave negative responses to recommendations for G-Tube placement (15). A third study found that 39% of the caregivers found it difficult to decide on gastrostomy procedure though most of the participants (90%) expressed that they were sufficiently informed about G-Tube placement (17).…”

Section: Negative and Positive Outcomes Regarding G-tube Feedingmentioning

confidence: 98%

“…None of the reviewed studies were based on random or pseudorandom sampling. One of the limitations is that most of the studies did not clearly state whether the caregiver or the parent was the mother, father or another member of the family of pediatric patients (13)(14)(15)(18)(19)(20)(21). Due to this reason, the results may not be applicable to all family members.…”

Section: Negative and Positive Outcomes Regarding G-tube Feedingmentioning

confidence: 99%

“…Three of the reviewed studies found both positive and negative effects of gastrostomy tube feeding on the pediatric patients, their caregivers (14,15,17). For the period before the gastrostomy procedure, these studies found that caregivers found it difficult to decide on gastrostomy procedures, and that inadequate knowledge of gastrostomy procedure was associated with a negative evaluation of tube feeding.…”

Section: Negative and Positive Outcomes Regarding G-tube Feedingmentioning

confidence: 99%

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Çocuklarda Gastrostomi̇ Prosedürü Öncesi̇ Ve Sonrasi Ebeveynlerin Tutumu, Bakiş Açisi Ve Deneyi̇mleri̇: Kanti̇tati̇f Çalişmalarin Si̇stemati̇k Derlemesi̇

Suluhan

YILDIZ

DeBerg³

et al. 2019

Turkish Journal of Pediatric Disease

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It is important to understand caregivers' need for support from healthcare provider and the effect of gastrostomy tube feeding (G-tube feeding) on the lives of children and their caregivers before and after gastrostomy procedure. This systematic review aims to identify the opinions, attitudes and experiences of the caregivers related with G-tube feeding. We reviewed quantitative studies in English that deal with opinions, experiences and attitudes of caregivers before and after children's gastrostomy procedure. In consultation with a medical librarian, we reviewed quantitative studies on our subject that were published up to 10 May 2015 by using five electronic databases, namely, CINAHL, PubMED, PSYCINFO, SCOPUS and Ovid Cochrane database of Systematic Reviewsfor quantitative studies. The quality of reviewed studies was evaluated by using JBI Critical Appraisal Checklist for Observational Studies. We identified 1897 citations and only eight studies from the citation list met the inclusion criteria. Five studies collected data after G-tube placement whereas the remaining three studies collected data during both the pre-procedural and post-procedural period. In six of these studies, outcomes were assessed by using objective criteria. None of the studies used questionnaires, whose reliability and validity were assessed for the country that the studies were conducted at. Caregivers in five of these studies expressed positive outcomes, such as, decreasing stress levels, increased satisfaction for the children and their parents, and improvements in the quality of life and the communication between the children and their parents. Three studies found both positive and negative impacts of G-tube placement on the lives of children and caregivers. Factors, such as, difficulty in reaching a final decision on G-Tube placement, inadequate information provided by healthcare professionals, restricted mobility, stress related with G-tube feeding, insufficient postoperative education program, and fear of unintentional loss of the gastrostomy button, were expressed as negative outcomes of G-tube feeding. Although some studies state that feeding with gastrostomy tube facilitates the lives of children and caregivers, some studies show that the gastrostomy tube adversely affects the lives of children and families. As a result, healthcare professionals should tend to inform families about all aspects of the procedure during the gastrostomy procedure, knowing these positive and negative consequences from studies.

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Parents’ Perceptions of Gastrostomy Feeding for Children With Neurological Disabilities

Cited by 5 publications

References 19 publications

Caregiver Perceptions about their Decision to Pursue Tracheostomy for Children with Medical Complexity

Caregiver Perceptions about their Decision to Pursue Tracheostomy for Children with Medical Complexity

Enteral feeding and its impact on family mealtime routines for caregivers of children with cerebral palsy: A mixed method study

Çocuklarda Gastrostomi̇ Prosedürü Öncesi̇ Ve Sonrasi Ebeveynlerin Tutumu, Bakiş Açisi Ve Deneyi̇mleri̇: Kanti̇tati̇f Çalişmalarin Si̇stemati̇k Derlemesi̇

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