Original Title: Parcours périnatal : soutenir les femmes en situation de handicap liée à une incapacité physique, à une incapacité intellectuelle ou à l'autisme

Authors' objectives: In response to measure 21 of the Plan d'action sur la santé et le bien-être des femmes (2020-2024) [MSSS, 2020], a state of the art study documented that women in a handicap situation related to a physical disability, an intellectual disability or autism encounter various obstacles during their perinatal journey [INESSS, 2023]. Indeed, women in a handicap situation sometimes have to interact with service providers whose knowledge and experience of their situation may be limited. The information they receive may not be adapted to their needs, and may therefore be difficult to access or incomplete, given the particularities of their handicap situation. This information may also be shared to a greater or lesser extent among the service providers present around them. From the announcement of pregnancy to the first weeks post-partum with their baby, these women require care and services adapted to their difficulties and to the different environments they encounter. In this context, the ministère de la Santé et des Services sociaux (MSSS) mandated the Institut national d'excellence en santé et en services sociaux (INESSS) to develop a support tool designed to improve the care and service experience and better meet the specific needs of women in a handicap situation during their perinatal journey. This tool is part of the work linked to the 2023-2028 Plan d'action en périnatalité et en petite enfance (Perinatal and Early Childhood Action Plan).

Authors' results and conclusions: RESULTS : In light of the integration of all the collected data, the support tool details the recommended approach for professionals in order to improve the perinatal care and service experience of these women and better meet their needs. This approach aims to offer the right support, at the right time, according to two general principles and four support practices. The general principles are to be considered throughout the entire process, and call on professionals to: 1) go beyond the woman's diagnosis or suspected diagnosis, and 2) adapt their approach to the woman's aptitudes and difficulties linked to her handicap situation, to meet her specific needs. The four support practices, adapted to each perinatal period, suggest: 1) listening to needs and supporting their expression, 2) making encounters flexible, 3) creating accessible and safe environments, and 4) exchanging adapted information and ensuring that it is understood. These four practices are described, with action points and examples, as appropriate, to help professionals deploy them with women in a handicap situation, at the right moment in the perinatal pathway. Two appendices have been added to support professionals in their use of the tool. CONCLUSIONS : Women in a handicap situation related to a physical disability, an intellectual disability or autism are likely to encounter obstacles during their perinatal journey. These women may require personalized support focused on their abilities and difficulties during pregnancy, childbirth and the post-partum period. The purpose of this tool is to help health and social service professionals deploy support tailored to the specific needs of these women during their perinatal journey, in relation to their handicap situation.

Authors' methods: Following consultation with key informants at the start of the project, a review of the scientific and grey literature was first completed to identify documented perinatal support practices for women in a handicap situation. Consultations were also held with these women to find out about their experiences during their perinatal journey within the health and social services network. An advisory committee was set up to obtain feedback at key stages in the development of the tool. The committee included health and social services professionals and researchers from different disciplines, with clinical expertise in perinatal care and / or women in a handicap situation. All data from the literature and consultations were integrated to develop a tool proposing support practices to be deployed with women in a handicap situation. Finally, members of the advisory committee and future users contributed to the work by providing feedback to verify the applicability of the tool to the target audience, i.e. health and social service professionals offering services during the perinatal trajectory in the Quebec health and social services network.

Project Status: Completed

URL for project: https://www.inesss.qc.ca/publications/repertoire-des-publications/publication/parcours-perinatal-soutenir-les-femmes-en-situation-de-handicap-liee-a-une-incapacite-physique-a-une-incapacite-intellectuelle-ou-a-lautisme.html

Year Published: 2025

URL for published report: https://www.inesss.qc.ca/publications/repertoire-des-publications/publication/parcours-perinatal-soutenir-les-femmes-en-situation-de-handicap-liee-a-une-incapacite-physique-a-une-incapacite-intellectuelle-ou-a-lautisme.html

English language abstract: An English language summary is available

Publication Type: Other

Country: Canada

Province: Quebec

Organisation Name: Institut national d'excellence en sante et en services sociaux

Contact Address: L'Institut national d'excellence en sante et en services sociaux (INESSS) , 2021, avenue Union, bureau 10.083, Montreal, Quebec, Canada, H3A 2S9;Tel: 1+514-873-2563, Fax: 1+514-873-1369

Contact Name: demande@inesss.qc.ca

Contact Email: demande@inesss.qc.ca

Copyright: L'Institut national d'excellence en sante et en services sociaux (INESSS)