Parental Perspectives on Family Mealtimes Related to Gastrostomy Tube Feeding in Children

Abstract

Built on the important functions daily routines serve families and child health, this study aimed to explore parents’ descriptions of mealtimes and food-related challenges when living with a child using a gastrostomy feeding tube. The study was informed by ecocultural theory and based on in-depth interviews combined with stimulated recall. The interviews of 10 parents were inductively analyzed by means of qualitative content analysis. Four main categories comprised the parents’ descriptions: “One situation, different functions,” “On the child’s terms,” “Doing something to me,” and “An unpredictable pattern,” with one overarching theme. The analyses showed that the parents strived to establish mealtimes in line with their cultural context, although they struggled to reach a point of satisfaction. The study highlights the importance of health care professionals to address the medical aspects of caring for a child with a G-tube, but also the potential psychological and social consequences for ordinary family life.

Experiences before and after nasogastric and gastrostomy tube insertion with emphasis on mealtimes: a case study of an adolescent with cerebral palsy

“…The family in this study experienced a sense of relief when the G-tube was finally inserted, since it resulted in less pressure at mealtimes, which is in line with earlier research (Backman et al, 2021 ; Mårtensson et al, 2021 ). It has previously been confirmed that a G-tube insertion can result in an alteration in the family’s daily life (Russell et al, 2018 ).…”

“…All these aspects contributed to a relaxed mealtime for the family. In order to reach optimal mealtimes after a G-tube insertion, commitment from a paediatric care team has been emphasized (Backman et al, 2021 ; Backman & Karlsson, 2021 ; Russell et al, 2018 ). Nevertheless, the G-tube also required the family to change, giving rise to new mealtime habits.…”

Congenital or Early Developing Neuromuscular Diseases Affecting Feeding, Swallowing and Speech – A Review of the Literature from January 1998 to August 2021

“…It affects not only the meals themselves, but also many other parts of family life. It is important that healthcare professionals ask about eating and eating difficulties as they are not always self-reported [96]. Nutritional management practices vary internationally and there is an urgent need for larger, coordinated, prospective intervention studies of nutrition in NMDs [97,98].…”

Feeding children with neurodisability: challenges and practicalities

“…Non-physical causes—the practicalities of feeding of a vulnerable child with multiple medical issues in a busy family environment when, for many potential reasons, feeding is not necessarily a pleasurable experience 18–21. This includes parental/professional views towards type and method of feeding, altered perception of pain and discomfort, extreme sensitivity to certain textures and rigidity of feeding schedule associated with artificial feeding and lack of shared decision-making with families.…”

“…Management of method and type of feed in children is a very emotive topic and therefore requires shared decision-making with the carers 8. Even with high workload associated with feeding, most parents are not willing to reduce their participation in feeding and decisions around feeding and have its root in parental identity and role in providing for the family 8 19. In children with nutritional deficiencies, enteral tube feeding support should be discussed and feeding plan individualised to meet the family’s needs.…”