RESPCCT: Research Examining the Stories of Pregnancy and Childbearing in Canada Today

Régions: Inuvialuit Settlement Region, Gwich'in Settlement Area, Sahtu Settlement Area, Dehcho Region, North Slave Region, South Slave Region, Qikiqtaaluk Region

étiquettes: health, patient care, maternity care, pregnancy, childbirth

chercheur principal: Vedam, Saraswathi (1)
Nᵒ de permis: 16875
Organisation: The University of British Columbia
Année(s) de permis: 2021
Délivré: août 19, 2021
Équipe de projet: Jan Christilaw, Wendy Norman, Janusz Kaczorowski, Raymonde Gagnon, Kathrin Stoll, Liz Darling, Wendy Hall, Beverley Chalmers, Lesley Tarasoff, Laura Beer, Winnie Lo, Alison Mclean, Alexandra Roine, Kat Xie, Mary Decker

Objectif(s): To develop a valid and reliable person-centered survey to measure the quality of maternity care in Canada among people with various identities, according to the WHO criteria for Respectful Maternity Care and mistreatment.

Description du projet: This licence has been issued for the scientific research application No.4895. The goal of this project is to develop a valid and reliable person-centered survey to measure the quality of maternity care in Canada among people with various identities, according to the WHO criteria for Respectful Maternity Care and mistreatment. The research team consists of a Steering Council of 10 community members with recent pregnancy experiences and multiple identities. The research team performed a systematic review of existing measures of respectful maternity care and created a list of 300+ items that measure experience of respect and disrespect during pregnancy and childbirth. The team only included items from studies with evidence of patient involvement in the creation or vetting of items. Next, the team completed a Delphi process with 20 Canadian and global experts in reproductive health research and maternity service users, to reach agreement about the best way to capture people’s experiences of respect, discrimination and mistreatment during pregnancy, labour, birth, and the postpartum period. The Delphi team rated each item for: 1) importance (to the measurement of respectful/disrespectful care), 2) relevance (to diverse communities of childbearing people in Canada), and 3) clarity. Participants were encouraged to revise items, and to suggest additional items. This two phase process resulted in a final list of 80 items that measure different dimensions of respectful/disrespectful care, including physical and verbal abuse, informed consent and other components of patient-centered care, experiences of stigma and discrimination when accessing care, and failure to meet standard of high quality pregnancy and birth care as outlined by the WHO. Concurrent to this process, the team supervised two international doctoral students to gather relevant sociodemographic variables that ensure the respectful assessment of multiple identities, and to vet them with the Steering Council before the team combined these socio-demographic items with the 80 items that measure RMC, to construct a draft survey instrument. The team plans to launch the English version of the survey. The survey is hosted on Qualtrics, the UBC approved online survey platform. Data collection will be open for 6-12 months, depending on how long it takes to achieve our minimum sample size of 10,000 respondents for the online survey. The data collection app will be available for the same amount of time. Specifically, the team will refer survey participants to a free qualitative research application called VoQual, developed by a midwifery researcher (Hazel Keedle) in Australia to allow participants to elaborate on their pregnancy and birth stories. The team will provide participants with basic information about the app and its role in the research project, and participants will then be referred to our study website to learn more about its privacy features and how to install. The app itself will have the full consent form. All participants will be given the option to download this app. The program allows for video and audio data collection. Audiovisual media data will be collected separately from the survey. While participants can either submit audio or video files, they are encouraged in the consent form to submit audio files. The files are stored in secure encrypted servers in Australia, the details of which are disclosed in the consent and additional documents. The app is programmed to allow the audio files to be auto-transcribed using NVivo software. In addition, audio files will be transferred to UBC encrypted and password protected computers (FACMED) using secure transfer protocols. Participants who completed the survey and are interested in submitting a recording have the option of linking their survey responses to their recording by pressing a button at the end of the survey that will generate a random number. Participants who are opting into the linkage will then use this number as their username when they sign up for the free app. The RESPCCT Study is currently recruiting for participants. In the later half of 2021 the team will clean and analyze data, and generate reports and manuscripts. Between 2022- 2023 the team will engage in knowledge translation activities with community partners. Throughout the project, steering committee members and coinvestigators will also be asked to reflect on the quality of their engagement in the RESPCCT study (community engagement survey), using a validated questionnaire from McGill called the Public and Patient Engagement Evaluation tool. This will be populated anonymously in the summer of 2020. Findings from the study will contribute to improved understanding of experiences with maternity care, especially among vulnerable populations in Canada. The knowledge translation plan may include: 1) A summary report of findings (written in plain English), to be presented live, in print, or through social media to members of the community; Creation of educational resources for women and care providers written in plain English based on the study findings. Produced in lay language (and translated into other languages as needed) they could be distributed to agencies serving vulnerable populations in Canada; 3) Training for midwifery, patients and women from vulnerable populations to disseminate information about birth choices to their respective communities in a culturally appropriate manner; 4) Policy briefs written for key audiences influencing maternity care in Canada, including hospitals, health authorities, Ministry of Health, MLAs and other community representatives in government, (e.g. outlining the needs and desires of uninsured pregnant women, and vulnerable populations); 5) Team members may give interviews about birth choices and relevant topics to local print media, TV, radio, and websites; 6) Community/townhall meetings targeted to women and families in the local community, to share and discuss findings; 7) Team members may write papers and make presentations about the project to academic audiences; and, 8) A social media campaign may be launched using Twitter, Facebook, and other sites popular with women in the community. The fieldwork for this study will be conducted from August 20, 2021 to October 31, 2021.