Dissertation
Project PoppySeed: A Mixed-Methods Exploration of Parents' Lived Experiences with Anencephaly
Doctor of Philosophy (PhD), Washington State University
01/2020
Handle:
https://hdl.handle.net/2376/109952
Abstract
Objective: Perinatal loss occurs in 25% of pregnancies. One in four women who experience perinatal loss develop intense grief, which may lead to depression, anxiety, substance abuse, suicidal ideation, obesity, hypertension, and diabetes. The purpose of this study was to explore the impact of the lived experience of a pregnancy complicated by anencephaly on parents.
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. Findings from interview transcripts were analyzed with interpretive phenomenology and synthesized with overall and subscale Perinatal Grief Intensity Scale scores using a Pearson’s correlation.
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), 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. Only one woman received follow up care after the death of her neonate.
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.
Metrics
36 File views/ downloads
20 Record Views
Details
- Title
- Project PoppySeed: A Mixed-Methods Exploration of Parents' Lived Experiences with Anencephaly
- Creators
- Shandeigh N Berry
- Contributors
- Gail Oneal (Advisor)Andra Davis (Committee Member)Lonnie Nelson (Committee Member)Billie Severtsen (Committee Member)
- Awarding Institution
- Washington State University
- Academic Unit
- Nursing, College of
- Theses and Dissertations
- Doctor of Philosophy (PhD), Washington State University
- Number of pages
- 170
- Identifiers
- 99900581612901842
- Language
- English
- Resource Type
- Dissertation