Understanding the healthcare journeys of women with disability who experience violence

Background: The relationship between violence against women and disability is complex. Our understanding of the experience of both needs to be informed by the lived experience of those women within the context of service complexity and the visibility of women with disability. Both understandings of disability and responses to violence are rarely optimal across most healthcare services. This places women with disability at increased risk of experiencing intersecting and compounding avenues of marginalisation and poor care that does not meet their needs.

Aim: This research sought to understand the healthcare journeys of women with disability who experienced violence, and their perceptions of how well healthcare met their needs.

Methods: This research used a patient journey-mapping methodology that was adapted by the research team for use with people with disability. Journey mapping tools and in-depth interviews were used to explore each participants' lived experience of healthcare during and after violence and create a map that represented their journey through the healthcare system (n = 7). A composite map was then created to bring together common experience and touchpoints.

Results: Participants interacted with the healthcare system often during the time of violence, though many touchpoints were short-term, self-sought and lacked consistency. Most healthcare interactions were not due to the violence, but the timing and location was affected by the violence and safety concerns. Practitioners rarely asked questions about the violence, and when they did disclose, many participants were not believed or were blamed for the violence. Practitioners had a positive impact when they listened to and validated the participants' experiences and gave her agency and choice. Participants' disabilities were sometimes minimised by practitioners, and healthcare services and systems were often difficult to access.

Conclusions: Women with disability often access healthcare during times of violence, but healthcare is not sufficiently identifying the violence, responding appropriately to the violence, or meeting their access and inclusion needs. The intersection of disability and violence increases the barriers that women with disability face, and the health sector is still ill-equipped to deal with this complexity. Practitioners either support or discourage women attending services depending on their approach.