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Background: Technological advances in perinatal care have called for unprecedented decisions to be made regarding life support for extremely premature infants. Life support decisions encompass issues such as pregnancy management, mode of delivery, and resuscitation of the infant. Most experts agree that decisions should be shared between parents and physicians. While evidence suggests that fathers are also emotionally impacted by the risk of having an extremely premature infant, they are rarely included in studies of medical decision making. Thus, research is needed to understand fathers' involvement in making critical life support decisions for their infants.
Methods: Data are taken from a longitudinal, multi-site study that used a prospective, collective case study approach to data collection. The study was guided by the Ottawa Decision Support Framework which is a mid-range theory that assesses client and health care provider determinants of medical decisions. A total of forty mothers, 14 fathers and 71 health care providers participated in the study. Audio-recorded interviews were conducted and transcribed verbatim, processed, and coded using the ATLAS.ti software. All of the prenatal (20) and postnatal (12) interview data in which fathers and mothers participated are included in this analysis. These interviews offer information about fathers' involvement in making life support decisions and were selected because both the father and mother participated. Of the fathers that did not participate in this study, most were either not involved with the mothers, or were not available to be in the study. Matrices were created to allow a within and across case approach for analysis of fathers' involvement in making life support decisions.
Results: Both mothers and fathers reported that fathers are often actively involved in making life support decisions about the threatened birth of their extremely premature infant. In addition, both parents reported experiencing an array of emotions about the prospect of having an extremely premature baby. While parents made medical decisions together, in some cases fathers were the primary decision maker. Although fathers often help mothers to understand and retain information, as well as make decisions, medical conversations generally occur when fathers are absent.
Conclusions and Implications: These findings suggest the importance of fathers' involvement in making life support decisions for their extremely premature infant. Having fathers present when physicians deliver medical information can promote informed decision making. This approach is critical since fathers may be the primary decision maker. Social workers are well positioned to facilitate fathers' involvement by educating other health care providers about the importance of including them in medical conversations and decision making. In addition, social workers are integral in making sure the emotional needs of both parents are met. This is important since fathers are often dealing with their own feelings while simultaneously supporting the mother as well as any other children.