The multiple meanings of long-term gastrostomy in children with severe disability

doi:10.1016/S0882-5963(97)80029-2

Journal of Pediatric Nursing

Volume 12, Issue 2, April 1997, Pages 89-99

https://doi.org/10.1016/S0882-5963(97)80029-2 Get rights and content

Although the physiological implications of long-term gastrostomy for children with severe disability are well documented in the nursing literature, little is known about the psychosocial effect of this technological intervention. This study documents and interprets the perspective of expert nurses and parents to reveal conflictual social processes associated with gastrostomy decision-making and the intense moral dilemma that these processes create. The findings suggest that gastrostomy denotes multiple meanings for parents and health care providers, and that an appreciation for these meanings can have a significant positive impact on nursing care for these children and their families

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When attempting to meet nutritional goals with oral feeds in the context of oromotor dysfunction, families often used negative language, describing feeding as “torture” or “a battle.”39 However, other parents described the value of oral feedings as representing a “normal” life skill38,40 and as an important enjoyable sensory experience for their child.41 Gastrostomy tube placement represents a life-sustaining technology, and conversations about it invite consideration of big-picture goals, especially when the child’s medical condition is progressive rather than static.
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This apparent contradiction can be partly explained by differences in methodology. Questionnaires requesting cursory data on social functioning and mental health status (Tawfik et al., 1997; Sullivan et al., 2004; Heyman et al., 2004) will necessarily produce results different from in-depth interviews (Thorne et al., 1997; Craig & Scambler, 2006). We may conclude from all the available data that tube feeding has positive and negative aspects for families.
Literature on mothers' acceptance of their children's tube feeding is heterogeneous. When a child is fed via gastrostomy, parents may report higher quality of life and higher stress levels. Qualitative research suggests that tube feeding can conflict with fundamental expectations about the mothering role. In this qualitative meta-analysis, parental statements from various studies have been excerpted and theory-based analyzed. Data suggest that feeding a child orally is not only an important aspect of mothering but also a key element for the development of a motherhood identity. Nonoral feeding often results in psychological stress and a struggle to negotiate the motherhood identity successfully and may result in traumatization of the mother. Preventive psychological guidance is recommended to decrease the risk of posttraumatic stress disorder in mothers and disturbances in the mother–child relationship and to assist in maternal coping with a child's feeding disorder.
Enteral Feeding in Neurologically Impaired Children with Gastroesophageal Reflux: Nissen Fundoplication and Gastrostomy Tube Placement Versus Percutaneous Gastrojejunostomy
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Parents or caregivers of neurologically impaired children with gastroesophageal reflux who require enteral nutrition are often faced with the option of having their child undergo an antireflux surgery and placement of a gastrostomy tube or have a percutaneous gastrojejunostomy tube placed under fluoroscopic guidance. It is important that nurses have an understanding of these procedures and their associated risks and benefits as well as knowledge of the impact each might have on the daily life and care of these children to help support families during this decision-making process.
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The multiple meanings of long-term gastrostomy in children with severe disability

Current Problems in Surgery

Commentary on caring for chronically ill children at home: Factors that influence parents' coping

ONS Nursing Scan in Oncology

The triggers of heightened parental uncertainty in chronic, life-threatening childhood illness

Qualitative Health Research

Phenomenology and psychological research

Preparing families of children with gastrostomies

Pediatric Nursing

A button for gastrostomy feedings

Maternal Child Nursing

The gastrostomy feeding button

Pediatric Nursing

Managing and analyzing qualitative data: A description of tasks, techniques, and materials

Western Journal of Nursing Research

The moral geography of home care

Advances in Nursing Science

Naturalistic inquiry

Interpretive research methodology: Broadening the dialogue

Advances in Nursing Science

A prospective evaluation of the button gastrostomy in children

Canadian Journal of Surgery