Extended family support for parents faced with life-support decisions for extremely premature infants.

Kavanaugh, Karen; Nantais-Smith, Leanne M; Savage, Teresa; Schim, Stephanie Myers; Natarajan, Girija

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.