Disabled people say ‘Nothing about us without us’

Abstract

Background: This study explored disability community representa-tives’ perspectives on why and how health professional education could be strengthened to address the prevalent challenges in health care experienced by disabled people. Methods: A total of 14 people from the disability community (disabled people, caregivers and disability advocates) in Auckland, New Zealand, participated in three focus groups moderated by a disabled community researcher. Audio recordings were transcribed and analysed thematically to characterise broad themes. Findings: Participants described many barriers to health care experienced by disabled people, with service providers’ inadequate knowledge of disability issues being a key contributor. Participants viewed educational approaches incorporating disabled peoples’ diverse lived realities as critical to improving health system responses to these inequities. They recommended broadening concepts and teaching methods to shift common deficit framing of disability, engaging disabled people to develop and deliver curricula, improving communication, and promoting empathic provider–patient partnerships in care. Study participants strongly advocated inclusive participatory approaches across training pathways using assistive and multimedia technologies that optimise the engagement of disabled people and reduce respondent burden. Discussion: Disability community participants urged strengthening health professional training to address the prevalent inadequacies of health systems in responding to disabled people’s needs. They viewed a greater awareness of the lived realities of disabled people and critical consciousness to overcome barriers to care as essential attributes of a compe-tent workforce. These findings indicate the need to engage, empower and work in partnership with disabled people to develop reflexive health professional curricula. Core competencies should be considered mandatory given the increasing prevalence of disability globally.