Quality of Life Issues for Families who Make the Decision to Use a Feeding Tube for Their Child with Disabilities

Abstract

Qualitative research methods were used to study families who had made or were in the process of making the decision to use a feeding tube to meet the nutrition needs of their child with a disability. Data were gathered over a 2-year period through interviews with eight families. Family decision making in the context of quality of life was examined using a theoretical family systems model. Descriptive themes and issues emerged from the data that led to a greater understanding of what families face in making this decision for their child. The data can help families and professionals work in partnership before a child becomes severely malnourished or medically compromised as a result of inadequate nutrition. The themes and issues are discussed and implications for future interventions and research are presented.