@article{ba554f5f4ddc43cb9591fd83733b7317,
title = "I felt so much conflict instead of joy: an analysis of open-ended comments from people in British Columbia who declined care recommendations during pregnancy and childbirth",
abstract = "Background: No Canadian studies to date have examined the experiences of people who decline aspects of care during pregnancy and birth. The current analysis bridges this gap by describing comments from 1123 people in British Columbia (BC) who declined a test or procedure that their care provider recommended. Methods: In the Changing Childbirth in BC study, childbearing people designed a mixed-methods study, including a cross-sectional survey on experiences of provider-patient interactions over the course of maternity care. We conducted a descriptive quantitative content analysis of 1540 open ended comments about declining care recommendations. Results: More than half of all study participants (n = 2100) declined care at some point during pregnancy, birth, or the postpartum period (53.5%), making this a common phenomenon. Participants most commonly declined genetic or gestational diabetes testing, ultrasounds, induction of labour, pharmaceutical pain management during labour, and eye prophylaxis for the newborn. Some people reported that care providers accepted or supported their decision, and others described pressure and coercion from providers. These negative interactions resulted in childbearing people feeling invisible, disempowered and in some cases traumatized. Loss of trust in healthcare providers were also described by childbearing people whose preferences were not respected whereas those who felt informed about their options and supported to make decisions about their care reported positive birth experiences. Conclusions: Declining care is common during pregnancy and birth and care provider reactions and behaviours greatly influence how childbearing people experience these events. Our findings confirm that clinicians need further training in person-centred decision-making, including respectful communication even when choices fall outside of standard care.",
keywords = "Care narratives, Childbirth, Declining care, Informed consent, Lived experiences, Person-centered care, Refusal of care, Respectful maternity care, Shared decision-making",
author = "Kathrin Stoll and Wang, {Jessie J.} and Paulomi Niles and Lindsay Wells and Saraswathi Vedam",
note = "Funding Information: The authors gratefully acknowledge our community partners for their long-term commitment to the diverse group of people they serve. We thank academic and clinician colleagues from several UBC departments, including Education, Family Practice, Public Health, Obstetrics, Midwifery, and the Women{\textquoteright}s Health Research Institute, for their assistance with recruitment, research training, and support for the community. In particular, work group leaders Lorna McRae, Mo Korchinski, Anna Tashlykova, Raquel Velasquez, Cathryn Ellis, and Nora Timmerman liaised with community members. We are grateful to Birth Place Lab research coordinators, Barbara Karlen and Karen Gelb, for their skillful coordination of our multi-stakeholder teams. Student research assistants Kelsey Martin, Sabrina Afroz, Kerri Blackburn, Esther Lindokken supported the project. Most of all, we thank the women and families of British Columbia who shared their stories with us. KS is a reproductive health researcher with degrees in psychology, family studies and interdisciplinary studies. She completed a five-year postdoctoral fellowship in Population and Public Health at the University of British Columbia (UBC) and a one-year fellowship in primary healthcare research. In addition to her position at the Birth Place Lab (University of British Columbia), KS holds an appointment as lecturer at Hannover Medical School in Germany. JW holds a degree in Medical Laboratory Science and is a candidate in the MD class of 2021 at UBC. She has worked with the Birth Place Lab as a research assistant since 2016. PN is a PhD-trained midwife and midwifery care researcher who joined the Birth Place Lab as a postdoctoral fellow. She is one of the few midwives serving on the Maternal Morbidity and Mortality Review Committee of the New York City Department of Health and is Assistant Professor at New York University Rory Meyers College of Nursing. SV is Lead Investigator at the Birth Place Lab and professor of midwifery at University of British Columbia. Her community-based participatory research projects have led to the development of pragmatic tools that improve person-centered care, including patient-designed quality measures that are being applied in many countries. She is currently PI for the RESPCCT Study examining childbearing experiences across Canada. Funding Information: The survey was supported by Vancouver Foundation operating grant #UNR12-0701 for the provincial community-based participatory study Changing Childbirth in BC. The lead author was supported by postdoctoral trainee grants from the Michael Smith Foundation for Health Research and the Canadian Institutes of Health Research between 2013 and 2017. The lead of the Birth Place Lab, Saraswathi Vedam, is supported by a Michael Smith Foundation for Health Research (MSFHR) Health Professional Investigator Award (grant #17,020), which also supports the qualitative analysis activities of the Changing Childbirth in BC project. The funders had no role in the study design, data collection and analysis, decision to publish, or preparation of the manuscript. Funding Information: KS is a reproductive health researcher with degrees in psychology, family studies and interdisciplinary studies. She completed a five-year postdoctoral fellowship in Population and Public Health at the University of British Columbia (UBC) and a one-year fellowship in primary healthcare research. In addition to her position at the Birth Place Lab (University of British Columbia), KS holds an appointment as lecturer at Hannover Medical School in Germany. Publisher Copyright: {\textcopyright} 2021, The Author(s).",
year = "2021",
month = dec,
doi = "10.1186/s12978-021-01134-7",
language = "English (US)",
volume = "18",
journal = "Reproductive Health",
issn = "1742-4755",
publisher = "BioMed Central",
number = "1",
}