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

Abstract

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.

Documentation of everyday life and health care following gastrostomy tube placement in children: a content analysis of medical records.

“…Other adaptive actions taken included relocating the feeding of the child from the table to a couch or pram to aid the use of a feeding pump, replacing recommended prefabricated enteral formulas with home-blenderised feedings that better reflect the values of the family, or by initiating connections to service providers when dissatisfied with current healthcare contacts. The findings correspond to previous research that discusses the ambiguous outcomes of the G-tube and confirms the consequences of the G-tube reaching beyond establishing basic nutrition [12][13][14][15]. The documentation describes how the G-tube results in more or less conscious accommodations in order to establish sustainable mealtime routines that potentially influence the developmental pathway of the child [7,17].…”

“…Yet, environmental barriers and meals continue to present challenges for some families, suggesting that they struggle in adapting to life with a G-tube. Caregivers have described the G-tube as an additional burden that restricts family activities, feel that professionals have control over family life, as well as experience problems integrating tube feeding into mealtime routines [13][14][15]. Thus, the use of a G-tube can be seen as influencing the ecocultural context of the child.…”

“…Despite the recommendations to address biological, psychological and social aspects in the health care of children using G-tubes, previous research describes a lack of professional guidance to families in adapting to everyday life with a G-tube and a predominant focus on nursing, supporting nutrition, adequate growth and monitoring safe swallowing [5,13,[20][21][22]. Caregivers have expressed frustration towards health professionals as "being removed from the realities of what is going on in the home" [14] (Russel et al 2017, p.7). Consequently, it is imperative to explore more deeply both the type of health care offered to children using G-tubes and the aim of the healthcare measures.…”

Home Percutaneous Endoscopic Gastrostomy Feeding: Difficulties and Needs of Caregivers, Qualitative Study

“…The National Institute for Health and Care Excellence emphasizes that home‐care patients on tube feeding should be supported by a multidisciplinary team . Furthermore, the success of home care for PEG patients depends largely on communication among family members, division of responsibilities, and the presence of support systems …”

“…43 Furthermore, the success of home care for PEG patients depends largely on communication among family members, division of responsibilities, and the presence of support systems. 17,44 Lastly, discharge follow-up, home care, and continuity in training on home care of PEG patients by multidisciplinary teams, including family members, improve patient outcomes, increase caregiver and patient satisfaction, prevent improper practices, and reduce healthcare costs. 43,45…”