Pathways of disability-based discrimination in cancer care

Abstract

Disabled people often report poorer health outcomes and increased barriers to accessing healthcare, compared to the general population. Our aim was to foreground lived experiences of disability-based discrimination, often indirect, and identify pathways through which this operates. We used a case study approach to explore the experiences of people with physical impairment accessing cancer services in England and Wales, from screening to therapy and follow-up, and investigated the complex and interacting nature of factors that affect their experiences. Participants described how they had to navigate a healthcare system that often was not responsive to their needs, leading to poor experiences of care. The barriers experienced by the participants operated at different levels. We identify three specific pathways through which discrimination is embodied: normativity expectations, lack of disability-awareness, and discontinuity of care. Our study is of particular importance to health professionals and policy makers, since there is limited evidence available on how people with physical impairment in the United Kingdom experience access to cancer care services. We argue that in order to advance the conversation on healthcare access for disabled people, it is important to reconceptualise the observed barriers as disability-based discrimination, reflective of broader structural processes, and to analyse in depth the pathways through which this discrimination operates.

Do people with disabilities experience disparities in cancer care? A systematic review

“…Ideally service delivery should aim at affordability, autonomy of patients, accessibility, specific workforce skillsets and availability of rehabilitation services [ 78 ]. The multiple barriers experienced by PwD during their cancer care ( Fig 3 ) are hence a reflection of a broader process of discrimination and disadvantage, mirrored in structural failings of current healthcare systems, within networks of intersecting factors that ultimately influence cancer outcomes [ 25 , 79 , 80 ].…”

“…Physicians and PwD should be able to collaborate along care pathways with shared-decision making, an approach based not only on clinical technical advice but on the life experience of patients, their caregivers and families, according to the principle of “Nothing About Us Without Us” [ 12 ]. In the clinical setting, barriers in physical access should be removed to avoid unacceptable delays in diagnosis and treatment [ 79 , 80 , 88 ]. Barriers in communication should be eliminated at several levels, from overcoming communication obstacles (not only for the hearing or visually impaired patients, but also with special-needs assistance for intellectual disability), to improving education of patients, clinicians and caregivers about cancer and the importance of screening, to training healthcare workers about the emotional and physical needs of PwD, enhancing cooperation with other specialists caring for them, in cross-functional teams, to anticipate and possibly reduce the impact of complications, with the goal of a patient-centred pathway [ 89 ].…”

Cancer inequalities experienced by people with disability: a systematic review protocol

“…10 Emerging evidence shows that people with disability face challenges in accessing health services like cancer screening that could help with early diagnoses of existing cancer. [11][12][13] Barriers to screening access could lead to cancer patients with disability presenting with later-stage disease, which reduces treatment options and lowers the survival rate in comparison to people without disability. 14 The first step to promoting equitable cancer-related outcomes for people with disability is to comprehensively understand the current state of evidence that quantifies cancer service and outcome inequalities to assess gaps in our knowledge and understand where inequalities are emerging.…”

“…Emerging evidence shows that people with disability face challenges in accessing health services like cancer screening that could help with early diagnoses of existing cancer 11–13. Barriers to screening access could lead to cancer patients with disability presenting with later-stage disease, which reduces treatment options and lowers the survival rate in comparison to people without disability 14…”