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The multiple meanings of long-term gastrostomy in children with severe disability
S E Thorne1, M J Radford, J McCormick
1University of British Columbia School of Nursing, Vancouver, Canada.
Insights
This study explores the psychosocial impact of long-term gastrostomy in children with severe disabilities. Findings reveal complex decision-making processes and moral dilemmas for families and nurses, highlighting the importance of understanding diverse meanings of gastrostomy.
Area of Science:
- Pediatric Nursing
- Bioethics
- Family Studies
Background:
- Long-term gastrostomy in children with severe disabilities has well-documented physiological implications.
- The psychosocial effects of gastrostomy interventions are less understood.
- Expert nurses and parents' perspectives are crucial for understanding this complex issue.
Purpose of the Study:
- To document and interpret the psychosocial effects of long-term gastrostomy from the perspectives of expert nurses and parents.
- To reveal the social processes and moral dilemmas involved in gastrostomy decision-making.
- To explore the multiple meanings of gastrostomy for families and healthcare providers.
Main Methods:
- Qualitative research approach.
- In-depth interviews with expert nurses and parents of children with severe disabilities requiring gastrostomy.
- Interpretive analysis of perspectives on gastrostomy decision-making and its psychosocial impact.
Main Results:
- Gastrostomy decision-making involves conflictual social processes.
- Intense moral dilemmas arise during the gastrostomy decision-making process.
- Gastrostomy holds multiple, often divergent, meanings for parents and healthcare providers.
Conclusions:
- Understanding the varied meanings of gastrostomy is essential for effective care.
- Appreciating these diverse perspectives can significantly improve nursing care for children with gastrostomy and their families.
- Addressing the psychosocial aspects of gastrostomy is critical for holistic pediatric care.
Abstract:
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.