Patient-led decision making: Measuring autonomy and respect in Canadian maternity care.

OBJECTIVE: The Changing Childbirth in British Columbia study explored women's preferences and experiences of maternity care, including women's role in decision-making. METHODS: Following content validation by community members, we administered a cross-sectional online survey exploring novel topics, including drivers for interventions, and experiences of autonomy, respect, or mistreatment during maternity care. Using the Mothers Autonomy in Decision-Making (MADM) scale as an outcome measure in a mixed-effects analysis, we examined differential experiences by socio-demographic and prenatal risk profile, type of care provider, interventions received, and nature of communication with care providers. RESULTS: A geographically representative sample of Canadian women (n = 2051) reported on 3400 pregnancies. Most women (95.2%) preferred to be the lead decision-maker during care. Patients of physicians had significantly lower autonomy (MADM) scores than midwifery clients as did women who felt pressured to accept interventions. Women who had a difference in opinion with their provider, and those who felt their provider seemed rushed reported the lowest MADM scores. CONCLUSION: Women's autonomy is significantly altered by model of maternity care, the nature of interactions with care providers, and women's ability for self-determination. PRACTICE IMPLICATIONS: If health professionals acquire skills in person-centred decision-making experience of autonomy among pregnant women may improve.

The Mother's Autonomy in Decision Making (MADM) scale: Patient-led development and psychometric testing of a new instrument to evaluate experience of maternity care.

OBJECTIVE: To develop and validate a new instrument that assesses women's autonomy and role in decision making during maternity care. DESIGN: Through a community-based participatory research process, service users designed, content validated, and administered a cross-sectional quantitative survey, including 31 items on the experience of decision-making. SETTING AND PARTICIPANTS: Pregnancy experiences (n = 2514) were reported by 1672 women who saw a single type of primary maternity care provider in British Columbia. They described care by a midwife, family physician or obstetrician during 1, 2 or 3 maternity care cycles. We conducted psychometric testing in three separate samples. MAIN OUTCOME MEASURES: We assessed reliability, item-to-total correlations, and the factor structure of the The Mothers' Autonomy in Decision Making (MADM) scale. We report MADM scores by care provider type, length of prenatal appointments, preferences for role in decision-making, and satisfaction with experience of decision-making. RESULTS: The MADM scale measures a single construct: autonomy in decision-making during maternity care. Cronbach alphas for the scale exceeded 0.90 for all samples and all provider groups. All item-to-total correlations were replicable across three samples and exceeded 0.7. Eigenvalue and scree plots exhibited a clear 90-degree angle, and factor analysis generated a one factor scale. MADM median scores were highest among women who were cared for by midwives, and 10 or more points lower for those who saw physicians. Increased time for prenatal appointments was associated with higher scale scores, and there were significant differences between providers with respect to average time spent in prenatal appointments. Midwifery care was associated with higher MADM scores, even during short prenatal appointments (<15 minutes). Among women who preferred to lead decisions around their care (90.8%), and who were dissatisfied with their experience of decision making, MADM scores were very low (median 14). Women with physician carers were consistently more likely to report dissatisfaction with their involvement in decision making. DISCUSSION: The Mothers Autonomy in Decision Making (MADM) scale is a reliable instrument for assessment of the experience of decision making during maternity care. This new scale was developed and content validated by community members representing various populations of childbearing women in BC including women from vulnerable populations. MADM measures women's ability to lead decision making, whether they are given enough time to consider their options, and whether their choices are respected. Women who experienced midwifery care reported greater autonomy than women under physician care, when engaging in decision-making around maternity care options. Differences in models of care, professional education, regulatory standards, and compensation for prenatal visits between midwives and physicians likely affect the time available for these discussions and prioritization of a shared decision making process. CONCLUSION: The MADM scale reflects person-driven priorities, and reliably assesses interactions with maternity providers related to a person's ability to lead decision-making over the course of maternity care.

The Mothers on Respect (MOR) index: measuring quality, safety, and human rights in childbirth.

BACKGROUND: Abuse of human rights in childbirth are documented in low, middle and high resource countries. A systematic review across 34 countries by the WHO Research Group on the Treatment of Women During Childbirth concluded that there is no consensus at a global level on how disrespectful maternity care is measured. In British Columbia, a community-led participatory action research team developed a survey tool that assesses women's experiences with maternity care, including disrespect and discrimination. METHODS: A cross-sectional survey was completed by women of childbearing age from diverse communities across British Columbia. Several items (31/130) assessed characteristics of their communication with care providers. We assessed the psychometric properties of two versions of a scale (7 and 14 items), among women who described experiences with a single maternity provider (n=2514 experiences among 1672 women). We also calculated the proportion and selected characteristics of women who scored in the bottom 10th percentile (those who experienced the least respectful care). RESULTS: To demonstrate replicability, we report psychometric results separately for three samples of women (S1 and S2) (n=2271), (S3, n=1613). Analysis of item-to-total correlations and factor loadings indicated a single construct 14-item scale, which we named the Mothers on Respect index (MORi). Items in MORi assess the nature of respectful patient-provider interactions and their impact on a person's sense of comfort, behavior, and perceptions of racism or discrimination. The scale exhibited good internal consistency reliability. MORi- scores among these samples differed by socio-demographic profile, health status, experience with interventions and mode of birth, planned and actual place of birth, and type of provider. CONCLUSION: The MOR index is a reliable, patient-informed quality and safety indicator that can be applied across jurisdictions to assess the nature of provider-patient relationships, and access to person-centered maternity care.