Adaptive Leadership in Parents Caring for their Children Born with Life-Threatening Conditions

The purpose of this study was to chronicle the adaptive challenges and adaptive work, including emerging leadership behaviors, recounted over time by the parents of very young children diagnosed before birth with life threatening conditions.

A descriptive, follow-up study design was used for the current study. Following the original grounded dimensional analysis study completed in 2012, the corpus for this analysis was collected in 2014. In-depth, audio-recorded interviews were conducted with 15 families (8 couples, 7 mothers). The 15 children, born with cardiac, abdominal, and cerebrospinal anomalies, were 14 - 37 months or deceased at follow-up. A directed content analysis of transcribed verbatim interviews was structured by the Adaptive Leadership framework.

Parents described behaviors that indicated a non-linear development towards adaptive leadership as they accomplished the adaptive work within intra- and interpersonal domains that was necessary to address challenges over time. Not all parents described abilities and/or a willingness to mobilize others to do adaptive work, suggesting that adaptive leadership remained an unrealized potential.

Understood as a complex adaptive system, parents of medically at-risk children hold potential for development towards adaptive leadership and collaborative partnership within the family and with healthcare providers.

Due to improved survival rates, parents face ongoing challenges related to their children's unpredictable and often chronic health needs. Study findings illustrate parents' adaptive work and leadership behaviors, which can inform nursing assessments, as well as the type and timing for intervention.