Mj. Brotherson et al., QUALITY-OF-LIFE ISSUES FOR FAMILIES WHO MAKE THE DECISION TO USE A FEEDING TUBE FOR THEIR CHILD WITH DISABILITIES, Journal of the Association for Persons with Severe Handicaps, 20(3), 1995, pp. 202-212
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 issue
s emerged from the data that led to a greater understanding of what fa
milies 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 inadequ
ate nutrition. The themes and issues are discussed and implications fo
r future interventions and research are presented.