Abstract
Perinatal loss secondary to a genetic disorder is a complex and multidimensional experience, often felt across the extended family unit, including parents, relatives, friends, and clinicians. Most literature on perinatal loss centers on parents, relying on quantitative methods for analysis. This highly structured perspective is limited, often leaving many questions unanswered. In contrast, this study used the qualitative methodology of narrative analysis to explore how perinatal loss and the grieving process are manifested and reported by different members of one extended family unit. It explored if and how grieving of the extended family unit impacted the narrative, future experiences, and decisions of one set of parents. This approach facilitated expansion upon the personal experiences that drive the narrative course. The goal of this endeavor was to better understand and highlight the complexities of grief following perinatal loss such that future genetic counselors and clinicians can more fully appreciate the scope of extended family grief and provide optimal care. This study addressed the grief process of three cohorts – parents, friends, and clinicians – surrounding the death of twin infants to Spinal Muscular Atrophy, SMA. Audiotaped interview transcripts were coded for recurring themes, four of which emerged across all cohorts: reacting to diagnosis, coping with loss, finding community, and preparing for future pregnancy. While all parties expressed shock at the diagnosis, each group displayed a unique evolution of the shock response. Seeking information was reported across all groups while displaying cohort-specific patterns and all cohorts reported behavioral changes in response to the grieving process. The results of this narrative analysis suggest that greater cross-disciplinary communication is warranted. By appreciating the ways in which perinatal loss can affect the extended family unit, clinicians may provide a greater level of empathy and compassion as well as more comprehensive clinical care to families facing perinatal loss.