PERINATAL LOSS – BEREAVEMENT CARE EXPERIENCES OF INDIANA WOMEN AND HEALTH PROVIDER PERSPECTIVES

Abstract

Background: Perinatal bereavement care after a miscarriage, stillbirth, or neonatal death is understudied in Indiana. The aims of this dissertation study were five-fold: (1) to understand perinatal bereavement care experiences of Marion County, IN women, (2) to examine how women’s participation in a peer support program impacts their journey with loss, (3) to collect bereaved women’s recommendations for improving existing bereavement care in Indiana, (4) to identify provider-reported challenges and gaps in perinatal bereavement care, and (5) to collect health provider’s recommendations to improve perinatal bereavement care in Indiana. Methods: Adopting a critical theoretical framework, semi-structured interviews were conducted with 10 bereaved women and 8 perinatal bereavement nurses. Using a phenomenological approach, interview transcripts were coded, analyzed, and organized into categories and themes. Results: Bereavement care experiences vary depending on the facility where the loss occurred, and the availability of a bereavement nurse. Widespread disparities in bereavement care for early term miscarriage persists, while attitudes of hospital staff continue to affect women’s emotional health. Support group participation impacts women positively through finding healing and purpose in their loss. Women recommend bereavement as a standard of care across Indiana birthing facilities, mandatory bereavement training for health professionals, robust follow-up care and mental health support for bereaved parents, and comprehensive lactation education for women who experience late to full term loss. Providers face challenges following up with patients, providing care to families as a result of financial barriers, and encounter language and cultural difficulties when serving immigrant and refugee groups. Providers recommend creating more community-based and culturally inclusive bereavement resources, and increased financial support for loss families. Conclusion: Future programs to improve perinatal bereavement care in Indiana must consider the experiences of bereaved parents and the recommendations made by women and health providers when designing interventions for this underserved group.