[State of knowledge: barriers and facilitators encountered by women living with a physical disability (PD), intellectual disability (ID) or autism spectrum disorder (ASD) when using perinatal services]

Wai Shun PL, Servot S
Record ID 32018004362
Original Title: État des connaissances: Obstacles et facilitateurs rencontrés par les femmes vivant avec une déficience physique (DP), une déficience intellectuelle (DI) ou un trouble du spectre de l’autisme (TSA) lorsqu’elles ont recours à des services périnataux
Authors' objectives: Since 2006, the United Nations (UN) has recognized the right to parenthood for persons with disabilities. However, due to personal factors and environmental barriers, some women living with a physical disability (PD), intellectual disability (ID) or autism spectrum disorder (ASD) are likely to find themselves in vulnerable situations during the perinatal period. Yet, providers of perinatal care and services seem to have little knowledge of the realities that these women face. The Plan d’action pour la santé et le bien-être des femmes 2020-2024 [2020–2024 Women’s Health and Wellness Action Plan] highlights the importance of improving knowledge to better tailor interventions to the needs and realities of these women. In this context, the Ministère de la Santé et des Services sociaux (Ministry of Health and Social Services) commissioned the Institut national d’excellence en santé et en services sociaux (INESSS) to conduct a review of literature on the barriers and facilitators encountered by women living with a PD, ID or ASD when using perinatal services.
Authors' results and conclusions: RESULTS: A total of 53 scientific studies were selected, of which only two were conducted in the province of Québec. These studies revealed that women living with a PD, ID or ASD encounter more barriers than facilitators when using perinatal services. In particular, it was noted that: • Perinatal service providers have limited knowledge and professional experience in the areas of PD, ID or ASD and the impact of these conditions on the perinatal period, given the lack of guidelines, courses or training specifically focused on the perinatal period for these women. 2 • The attitudes of some perinatal service providers are sometimes tainted by societal prejudices towards people living with a PD, ID or ASD. Attitudes that stigmatize or disregard women’s experiential knowledge can undermine their confidence in their parenting abilities and their empowerment. • The information these women need as they experience the different perinatal stages can be difficult to access. On the one hand, some perinatal service providers lack the necessary information themselves and, on the other hand, they may have difficulty adapting the way they communicate to accommodate the special needs of these women. • The clinical information required for perinatal monitoring of these women is rarely shared among the various service providers involved in their care. • Perinatal practices are sometimes inadequately adapted to address the needs of women living with a PD, ID or ASD. Childbirth and pain management methods are not always planned and adapted to the situation of these women. Moreover, the organization and funding of services as well as the existing policies do not always allow perinatal service providers to allocate sufficient time to women, to make service facilities physically accessible or to provide adapted equipment required for perinatal monitoring. CONCLUSION: For women living with a PD, ID or ASD to benefit from adequate perinatal services, strategies must be put in place to strengthen facilitators and reduce barriers encountered in these services. Since the studies consulted for this review were conducted in various countries, further work is needed to contextualize the results to the realities of women and healthcare practices in the province of Québec as well as to determine which interventions should be deployed in order to ensure optimal services.
Authors' methods: A rapid review of the international scientific literature was carried out. The literature search was conducted in five databases and was limited to studies published between 2012 and 2022. The methodological quality of selected studies was assessed using the Mixed Method Appraisal Tool (MMAT). The Human Development Model – Disability Creation Process (HDM-DCP) was used to identify barriers and facilitators encountered in perinatal services by women living with a PD, ID or ASD. These barriers and facilitators were then analyzed thematically and presented in a narrative synthesis.
Project Status: Completed
Year Published: 2023
English language abstract: An English language summary is available
Publication Type: Other
Country: Canada
Province: Quebec
MeSH Terms
  • Perinatal Care
  • Pregnant Women
  • Maternal Health Services
  • Intellectual Disability
  • Disabled Persons
  • Autism Spectrum Disorder
  • Developmental Disabilities
  • Female
  • Health Services Accessibility
  • Maternal Health
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: Gouvernement du Québec
This is a bibliographic record of a published health technology assessment from a member of INAHTA or other HTA producer. No evaluation of the quality of this assessment has been made for the HTA database.