Challenges, benefits, and strategies for delivering pregnancy care to people with disabilities: A qualitative study of service providers and decision-makers in Ontario, Canada

TL;DR

This study explores the challenges and benefits of providing pregnancy care to people with disabilities, based on the experiences of service providers and decision-makers in Ontario, Canada.

Contribution

The study offers new insights into strategies for improving pregnancy care for people with disabilities from the perspectives of service providers and decision-makers.

Findings

Challenges include lack of data, social determinants, inadequate infrastructure, and ableist attitudes.

Benefits include personal fulfillment and opportunities for system-level advocacy and bias confrontation.

Strategies for improvement include resource-sharing, accessibility measures, and enhanced provider training.

Abstract

To (1) understand the challenges and benefits of providing pregnancy care to people with disabilities and (2) identify strategies to address challenges, from the perspectives of health care and social service providers and decision-makers.

We undertook a qualitative descriptive study in Ontario, Canada, of 31 health care and social service providers and decision-makers. Participants completed semi-structured interviews about their education, training, and clinical or administrative experience working with pregnant and/or parenting people with physical, sensory, and intellectual or developmental disabilities, including challenges and benefits in pregnancy care provision, programming, and policies, as well as their recommendations to improve care. We took a directed content analysis approach.

Participants identified challenges in providing pregnancy care to people with disabilities, including a lack of data to inform care, the influence of social determinants of health on disabled people’s lives, inadequate infrastructure, poor coordination and communication across services, minimal disability-related training, and ableist attitudes among providers. Benefits to providing pregnancy care for people with disabilities included becoming advocates for system-level change, personal fulfillment, opportunities to confront one’s own biases, and development of humility related to the expertise of people with disabilities. Reflecting on these challenges and benefits, participants identified strategies for improving care, through creative resource-sharing solutions, accessibility measures, interprofessional and coordinated care, enhanced provider training, and respectful care approaches.

Findings show the need for changes at system, institutional, and service provider levels to improve pregnancy care for people with disabilities.

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