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 ofmaking 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.

The influence of parent gender on division of work in families of children with disabilities

“…A family systems framework helps the researcher to gain a more coti^lete understanding of the impact of each family's unique characteristics, patterns of interactions, beliefs and perceptions, work and social roles (functions), and family life cycle (Brotherson, Oakland, Secrist-Mertz, Litchfield, and Larson, 1995).…”

“…Therefore, interactions with a child with disabilities will necessarily impact other interactions within the family and with relationships outside the family, including social and work relationships (Harris & McHale, 1989;McGoldrick, 1989;Minuchin, 1974). A child who must eat every hour during waking hours or each four hours through the night will impact the amount of sleep and/or patience the caregiving parent will have, which may in turn intact the relationship between the parent and other children, the parent and the child requiring the extended care, and the parent and his or her spouse (Brotherson, et al, 1995). in addition, the parent who continually functions on little sleep or has a child with high care-taking demands, may possibly have impaired ability and/or relationships (Beckman, 1983) .…”

“…The actual definition of the work roles (functions) is based on the combined effect of the family characteristics, family interactions, and family perceptions and expectations over a period of time (Brotherson, et al, 1995). This means that work roles will be fluid, constantly adapting to meet the changing exjjectations, interactions, and characteristics throughout the life cycle.…”

“…Many children with severe disabilities are at risk for mainourishment due to a variety of feeding and nutrition difficulties which may include inability to chew or swallow, inability to absorb nutrients efficiently, constipation, interactions between food and drugs, or an increased need for calories and nutrients (Brotherson, Oakland, Secrist-Mertz, Litchfield, & Larson, 1995). These families often decide to surgically place a gastrostoir^ tvibe (feeding tube or G-tube)…”

“…The G-tube is placed directly into the stomach or small intestine and may be needed for an extended period time or even peirmanently (Brotherson, et al, 1995).…”