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

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

Research output: Contribution to journalArticlepeer-review

6 Scopus citations


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.

Original languageEnglish
Pages (from-to)255-262
Number of pages8
JournalNeonatal Network
Issue number5
StatePublished - 2014


  • Extremely premature infants
  • Family support
  • Parent decision making


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