Why parents of children with neurodevelopmental disabilities requiring gastrostomy feeding need more support

Abstract

This was a qualitative research study of parental perceptions of gastrostomy feeding before surgery using an in‐depth interview in the parental home to examine the factors parents consider when gastrostomy feeding is recommended and to identify the need for support. Participants were a subgroup of families taking part in a larger research study evaluating gastrostomy placement in children with severe neurodevelopmental disabilities at a major paediatric centre in the UK between 1998 and 2000. Parents of 22 children (13 males, nine females; mean age 4 years 8 months [SD 3 years 6 months]; age range 1 year 1 month to 13 years 3 months) were interviewed. Categories of disability were: cerebral palsy (n=10), a syndrome of chromosomal or genetic origin (n=10), and unconfirmed diagnoses (n=2). Thirteen children were recommended for a gastrostomy and seven were recommended for a gastrostomy with an antireflux procedure. Four families were undecided about surgery at the time of the interview, two of whom went ahead with the procedure some time later. Parental accounts of oral and tube feeding were both contradictory and ambivalent. Concerns about the loss of oral feeding, which was regarded as having a range of psychosocial effects for the child and family, were raised. Both oral and tube feeding have multiple meanings for parents and signify more than obtaining an adequate nutritional intake. The need for additional information about the risks and benefits of gastrostomy and how tube feeding fits into the context of everyday life were dominant themes. The biomedical emphasis on health and weight‐gains may fail to reflect parental concerns about tube and oral feeding. There is a need for greater practical and emotional support for families feeding children with severe disabilities.

Psychosocial aspects of feeding children with neurodisability

“…16 For some families, the suggestion of a gastrostomy may be received negatively, a new diagnosis that they have to come to terms with. 17,27 It may signify permanence and hence further evidence of a child's disability. This may be challenging for parents coming to terms with a child's disability and trying to normalize family life.…”

“…Underpinning parental desire for children to experience different types of food is the belief that eating orally is important for language acquisition or has developmental benefit. 17 Children's ability to manage different textures may also be taken as evidence of their progress in achieving developmental milestones. A return to 'liquid food' with little opportunity to experiment with tastes and textures or for children to indicate their preference may be viewed as a regressive step in terms of children's development.…”

“…However, research suggests that families would like the information sooner, including the impact of tube feeding on child and family in the context of their everyday lives. 17 Information needs include: how to care for the tube; training carers to provide tube feeding in different contexts, such as school and residential care; how to explain tube feeding to siblings; practical tips for going on holiday abroad or short trips; and children's ability to engage in physical and therapeutic activities, such as swimming and physiotherapy. 17 Providing checklists of items for families to research in advance of surgery may also prove useful.…”

“…This research emphasizes the importance of understanding the symbolic meanings of GFTs in relation to maternal identity, the maternal role, food, feeding, eating and child development. [17][18][19][20][21][22] FEEDING AND THE MOTHERING ROLE The suggestion of a GFT may challenge the 'good mother narrative' and signify maternal failure. Mothers may blame themselves for the child's inability to feed and poor growth or feel blamed by members of the extended family.…”

“…Ongoing assessment of parental psychosocial support needs and their ability to cope with oral/nasogastric tube feeding, with a view to moving toward feeding by a GFT, should form an essential aspect of clinical care. 16,17 SUPPORTING PARENTS THROUGH THE DECISION-MAKING PROCESS There is a growing body of literature, which highlights those factors influencing parental decision making in relation to the placement of a gastrostomy. This research emphasizes the importance of understanding the symbolic meanings of GFTs in relation to maternal identity, the maternal role, food, feeding, eating and child development.…”