Impact of Parental Involvement in Life-Support Decisions: A Qualitative Analysis of Parents' Adjustment Following Their Critically Ill Child's Death

Abstract

A retrospective, qualitative, preliminary study examined if parental involvement in a life-support withdrawal (LSW) decision impacts the perceptions and adjustment of parents whose child died in a pediatric critical care unit. Participants were parents whose child died following an LSW decision (11 mothers, 7 fathers) and parents whose child died without an LSW decision (5 mothers, 4 fathers). At 6 to12 months after their child's death, the two groups of parents were interviewed and asked to reexamine their perceptions of the following categories: understanding of child's medical condition, staff communication, support, and feelings of closure. Content analysis of the interview data indicated that in comparison to parents whose child died without an LSW decision, a significantly greater number of parents whose child died following an LSW decision were certain about their child's future health; believed that their child's quality of life would have been unacceptable; and reported less dissatisfaction with time spent with their child, fewer negative changes in family functioning, and more positive changes in feelings toward staff.