Dissertation/Thesis Abstract

Project PoppySeed: A Mixed-Methods Exploration of Parents' Lived Experiences with Anencephaly
by Berry, Shandeigh N., Ph.D., Washington State University, 2020, 171; 27831064
Abstract (Summary)

Objective: One in four women who experience perinatal loss develop intense grief. Adverse outcomes of intense grief include depression, anxiety, posttraumatic stress disorder, substance abuse, suicidal ideation, obesity, hypertension, and diabetes. Congenital anomalies such as anencephaly are the leading cause of perinatal mortality in the United States. The purpose of this study was to identify the impact of common experiential themes on perinatal grief intensity by exploring parents’ lived experiences with a pregnancy complicated by anencephaly.

Methods: This study used a convergent parallel mixed methods design. Twenty women and four men between 18-59 years old with a history of an anencephalic pregnancy participated. Participants completed one open-ended, individual interview, a demographic questionnaire and the Perinatal Grief Intensity Scale. Heidegger’s philosophy of an ontological death guided the analysis of interview transcripts in a Hermeneutic Circle. Qualitative findings were synthesized with overall and subscale Perinatal Grief Intensity Scale scores using a Pearson’s correlation coefficient. 

Results: Overall, 75% of parents (men=50%, women=80%) scored intense grief. Total and subscale scores indicating specific care practices associated with decreased grief included control over care (r=-.475, p=.019), providing parents with treatment options (r=-.484, p=0.17), and supportive obstetric providers (r=-.426, p=.038), specialists (r=-.437, p=.033) and hospital staff (r=-.445, p=.029). Qualitative patterns included overwhelming trauma, patient-centeredness as critical, stigmatizing perinatal loss, embracing personhood, and reframing reality. 

Conclusion: Congenital anomalies are commonly diagnosed during routine care yet transform the pregnancy experience. Receiving a diagnosis of anencephaly in utero is a traumatic experience, impacting parents for years after the completion of the pregnancy. Parents in this study were three times as likely to develop intense grief following their experience with anencephaly, indicating a critical need to improve screening practices, adopt a supportive, patient-centered approach which places parents in control over care decisions, and implement follow up care. It is critical for healthcare providers to recognize the traumatic and transformative experience of a pregnancy complicated by anencephaly on parents.

Indexing (document details)
Advisor: Oneal, Gail
Commitee: Davis, Andra, Nelson, Lonnie, Severtsen, Billie
School: Washington State University
Department: Nursing
School Location: United States -- Washington
Source: DAI-A 82/3(E), Dissertation Abstracts International
Subjects: Nursing, Counseling Psychology, Individual & family studies, Obstetrics
Keywords: Anencephaly, Interpretive Phenomenology, Perinatal Bereavement, Perinatal Grief
Publication Number: 27831064
ISBN: 9798678105103
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