Extended Family Support for Parents Faced with Life-Support Decisions for Extremely Premature Infants

Purpose: To outline parents' descriptions of extended family involvement and support surrounding decision making for their extremely preterm infant.

Design: Collective case study design in a prospective, descriptive, longitudinal research. Seventy-five digitally recorded interviews were done with parents before and after the birth.

Sample: Fifty-four parents (40 mothers, 14 fathers). Main Outcome Variable: Categories of family involvement and support in the parents' decision making.

Results: Most parents did not seek advice from family members for life-support decisions made prenatally. Instead, parents made the decision as a couple with their physician without seeking family input. Family members provided certain types of support: emotional support, advice and information, prayer, and instrumental help such as child care. Most parents described at least one way their family supported them. For postnatal and end-of-life decisions, parents were more likely to seek advice from extended family in addition to the other forms of support.