TY - JOUR
T1 - Silent loss and the clinical encounter
T2 - Parents' and physicians' experiences of stillbirth-a qualitative analysis
AU - Kelley, Maureen C.
AU - Trinidad, Susan B.
N1 - Funding Information:
We would like to thank the Global Alliance to Prevent Prematurity and Stillbirth, Seattle Children’s Hospital, and an anonymous philanthropic donor for their support of this project, Lake Research Partners for conducting the initial needs-assessment focus groups, and Dr. Craig Rubens, Dr. Michael Gravett, and Dr. Ben Wilfond for helpful feedback and review of the manuscript. Dr. Kelley would also like to thank the Bill and Melinda Gates Foundation: the impetus for this project grew out of a landscape review and meeting sponsored by the Foundation in 2009. We are very grateful for the clinicians who took time to share their experiences and perspectives on stillbirth. And our deepest appreciation goes to the parents who bravely shared their experiences and the memories of their children with us. We are especially grateful for those parents who took time out of their hectic lives to review an earlier draft of the manuscript.
PY - 2012/11/27
Y1 - 2012/11/27
N2 - Background: In the United States, an estimated 70 stillbirths occur each day, on average 25,000 each year. Research into the prevalence and causes of stillbirth is ongoing, but meanwhile, many parents suffer this devastating loss, largely in silence, due to persistent stigma and taboo; and many health providers report feeling ill equipped to support grieving parents. Interventions to address bereavement after neonatal death are increasingly common in U.S. hospitals, and there is growing data on the nature of parent bereavement after a stillbirth. However, further research is needed to evaluate supportive interventions and to investigate the parent-clinician encounter during hospitalization following a stillbirth. Qualitative inquiry offers opportunities to better understand the lived experience of parents against the backdrop of clinicians' beliefs, intentions, and well-meaning efforts to support grieving parents.Methods: We present a secondary qualitative analysis of transcript data from 3 semi-structured focus groups conducted with parents who had experienced a stillbirth and delivered in a hospital, and 2 focus groups with obstetrician-gynecologists. Participants were drawn from the greater Seattle region in Washington State. We examine parents' and physicians' experiences and beliefs surrounding stillbirth during the clinical encounter using iterative discourse analysis.Results: Women reported that the cheery, bustling environment of the labor and delivery setting was a painful place for parents who had had a stillbirth, and that the well-meaning attempts of physicians to offer comfort often had the opposite effect. Parents also reported that their grief is deeply felt but not socially recognized. While physicians recognized patients' grief, they did not grasp its depth or duration. Physicians viewed stillbirth as an unexpected clinical tragedy, though several considered stillbirth less traumatic than the death of a neonate. In the months and years following a stillbirth, these parents continue to memorialize their children as part of their family.Conclusions: Hospitals need to examine the physical environment for deliveries and, wherever possible, offer designated private areas with staff trained in stillbirth care. Training programs in obstetrics need to better address the bereavement needs of parents following a stillbirth, and research is needed to evaluate effective bereavement interventions, accounting for cultural variation. Critical improvements are also needed for mental health support beyond hospitalization. Finally, medical professionals and parents can play an important role in reversing the stigma that surrounds stillbirth.
AB - Background: In the United States, an estimated 70 stillbirths occur each day, on average 25,000 each year. Research into the prevalence and causes of stillbirth is ongoing, but meanwhile, many parents suffer this devastating loss, largely in silence, due to persistent stigma and taboo; and many health providers report feeling ill equipped to support grieving parents. Interventions to address bereavement after neonatal death are increasingly common in U.S. hospitals, and there is growing data on the nature of parent bereavement after a stillbirth. However, further research is needed to evaluate supportive interventions and to investigate the parent-clinician encounter during hospitalization following a stillbirth. Qualitative inquiry offers opportunities to better understand the lived experience of parents against the backdrop of clinicians' beliefs, intentions, and well-meaning efforts to support grieving parents.Methods: We present a secondary qualitative analysis of transcript data from 3 semi-structured focus groups conducted with parents who had experienced a stillbirth and delivered in a hospital, and 2 focus groups with obstetrician-gynecologists. Participants were drawn from the greater Seattle region in Washington State. We examine parents' and physicians' experiences and beliefs surrounding stillbirth during the clinical encounter using iterative discourse analysis.Results: Women reported that the cheery, bustling environment of the labor and delivery setting was a painful place for parents who had had a stillbirth, and that the well-meaning attempts of physicians to offer comfort often had the opposite effect. Parents also reported that their grief is deeply felt but not socially recognized. While physicians recognized patients' grief, they did not grasp its depth or duration. Physicians viewed stillbirth as an unexpected clinical tragedy, though several considered stillbirth less traumatic than the death of a neonate. In the months and years following a stillbirth, these parents continue to memorialize their children as part of their family.Conclusions: Hospitals need to examine the physical environment for deliveries and, wherever possible, offer designated private areas with staff trained in stillbirth care. Training programs in obstetrics need to better address the bereavement needs of parents following a stillbirth, and research is needed to evaluate effective bereavement interventions, accounting for cultural variation. Critical improvements are also needed for mental health support beyond hospitalization. Finally, medical professionals and parents can play an important role in reversing the stigma that surrounds stillbirth.
KW - Parental support
KW - Perinatal bereavement
KW - Perinatal death
KW - Stillbirth
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U2 - 10.1186/1471-2393-12-137
DO - 10.1186/1471-2393-12-137
M3 - Article
C2 - 23181615
AN - SCOPUS:84869874127
SN - 1471-2393
VL - 12
JO - BMC Pregnancy and Childbirth
JF - BMC Pregnancy and Childbirth
M1 - 137
ER -