“I fought my entire way”: Experiences of declining maternity care services in British Columbia

Abstract

Background The 2016 WHO Standards for improving quality of maternal and newborn care in health facilities established patient experience of care as a core indicator of quality. Global health experts have described loss of autonomy and disrespect as mistreatment. Risk of disrespect and abuse is higher when patient and care provider opinions differ, but little is known about service users experiences when declining aspects of their maternity care. Methods To address this gap, we present a qualitative content analysis of 1540 written accounts from 892 service users declining or refusing care options throughout childbearing with a large, geographically representative sample (2900) of childbearing women in British Columbia who participated in an online survey with open-ended questions eliciting care experiences. Findings Four themes are presented: 1) Contentious interactions: “I fought my entire way”, describing interactions as fraught with tension and recounting stories of “fighting” for the right to refuse a procedure/intervention; 2) Knowledge as control or as power: “like I was a dim girl”, both for providers as keepers of medical knowledge and for clients when they felt knowledgeable about procedures/interventions; 3) Morbid threats: “do you want your baby to die?”, coercion or extreme pressure from providers when clients declined interventions; 4) Compliance as valued: “to be a ‘good client’”, recounting compliance or obedience to medical staff recommendations as valuable social capital but suppressing desire to ask questions or decline care. Conclusion We conclude that in situations where a pregnant person declines recommended treatment, or requests treatment that a care provider does not support, tension and strife may ensue. These situations deprioritize and decenter a woman’s autonomy and preferences, leading care providers and the culture of care away from the principles of respect and person-centred care.

Investigating trends in those who experience menstrual bleeding changes after SARS-CoV-2 vaccination

“…In doing so, we help provide evidence and context for clinicians regarding the validity of these experiences and we note future avenues of inquiry for researchers. Recognizing and attending to this emerging phenomenon of bleeding changes can help bolster trust between people who menstruate and medical providers, which is an area that has a long history of medical misogyny and gaslighting (95)(96)(97)(98). Current and historic focus on fertility and reproduction in research and clinical trials is insufficient for addressing the changes in bleeding patterns that cause concern in many people.…”

Coercion and non‐consent during birth and newborn care in the United States

“…45 In other studies about people declining care, participants have described various strategies practitioners used to influence them to agree with health recommendations. 27,28,46,47 During service provision, practitioners may recommend procedures, yet these should not threaten people's reproductive autonomy. In addition, the associations between how practitioners treat services users and racial and ethnic identity indicate forms of race-based mistreatment.…”

“…In addition, in the Changing Childbirth in British Columbia study, researchers 27,28 conducted a content analysis of 1540 written accounts from more than 1123 people who reported on procedures they declined, why they declined the procedures, and the results of those decisions. Niles and colleagues 28 identified four themes from the data that described people’s experiences of care: contentious interactions —combative relationships with practitioners when they declined care; knowledge as control and power ; morbid threats —practitioners making extreme threats when pregnant people declined interventions; and compliance as valued —social cues and indications that people were being a “good client” if they suppressed questions or a desire to decline care 28 . Themes from these data highlight how people can experience pressure to comply with practitioners and coercion or manipulation to accept the procedures when offered.…”

Investigating trends in those who experience menstrual bleeding changes after SARS-CoV-2 vaccination

“…In doing so, we help provide evidence and context for clinicians regarding the validity of these experiences and we note future avenues of inquiry for researchers. Recognizing and attending to this emerging phenomenon of bleeding changes can help bolster trust between people who menstruate and medical providers, which is an area that has a long history of medical misogyny and gaslighting (78)(79)(80)(81). Current and historic focus on fertility and reproduction in research and clinical trials is insufficient for addressing the changes in bleeding patterns that cause concern in many people.…”