At the recent annual meeting of the American Psychosocial Oncology Society, I had the opportunity to hear a presentation that made me wonder how well we are really ‘doing’ person-centred care, at times, in oncology. The presentation was entitled “Making the Invisible Visible” and was given by Traci Bethea (Assistant Professor, Georgetown Comprehensive Cancer Centre, Washington, DC).
The focus of the presentation was on Disability and Cancer. She challenged us to really ‘see’ disability in all its forms – to widen the lens of our viewpoint so that we become more aware of the rich diversity that is embodied in disability. She provided a wide range of illustrations about the variations in how people think and function in the world – and how those variations can result in individuals facing barriers in our healthcare environments. As a consequence, they may not receive quality cancer care.
I thought some of the ideas she shared were ones we all needed to reflect upon and think how they might apply in our own settings. It struck me that we may need to think intentionally about how we provide quality person-centred cancer care for ALL individuals.
In Canada, disability is defined broadly in the Accessible Canada Act and Canadian Human Rights Act as any impairment, whether permanent or episodic, that interacts with a barrier to hinder a person’s full and equal participation in society. Impairments could be physical, mental, intellectual, cognitive, learning, communication or sensory. Currently, disability affects approximately 8 million individuals aged 15 and older in this country. In the 2022 survey by Statistics Canada, of those reporting a disability, 42% of seniors had four or more co-occurring disabilities while 43% of youth and 36% of working-age adults had two or three types. Given these percentages, we are going to see these individuals in our clinics.
It is important to recognize that not all individuals living with a limitation embrace a self-identity of ‘disabled’. While some use the label (proudly) others shy away from it and avoid using the word. Some limitations are clearly evident (e.g., difficulty climbing stairs) and others may not be readily apparent (e.g., hearing loss, cognitive changes, learning disability). Awareness about these latter types of limitations is dependent on the person sharing their situation with others. However, some feel reluctant to mention the limitations for various reasons (e.g., stigma, embarrassment, fear of repercussions).
Traditionally, our medical world has held a conceptual model of disability as something within the individual that needs to be fixed. In contrast, the social model of disability encapsulates concepts of strengths, capabilities, barriers, facilitators, support, and environments. The context within an environment, with its physical structures and people’s attitudes, can present barriers for different individuals given their capabilities. Confronting these barriers and not feeling empowered or enabled to overcome them can leave an individual feeling lost and invisible, unheard and misunderstood. The challenge for health care professionals is to determine how our healthcare environment can be altered or adjusted so that barriers do not hold some individuals back from receiving quality person-centred care.
Mobility limitations in cancer account for 27.9% of disabilities and 7.9% emerge from limitations in selfcare ability (Cao et al., 2024). This leaves many limitations that emerge from other factors including racial, ethnic, gender, economic, BMI, education, socioeconomic status, co-morbidities, and pain. In my mind, many of these factors are ones that pre-date a cancer diagnosis and ought to be anticipated. We can screen for these factors at the onset of a cancer-related experience and know who is experiencing any of them. The other consideration is that an individual coming to a cancer experience with pre-existing disability has a wealth of experience in dealing with it and knowing how they cope with it. It behooves us to ask about how they manage with their disability and how we can best help them cope in the cancer care environment.
On the other hand, there are disabilities that may emerge as a result of the cancer and its treatment. As individuals are not able to engage in activities that are important to them, their psychosocial distress may increase and their quality of life reduced. These limitations are apt to be new to the individuals and they will likely need assistance to know how to cope with them. As oncology nurses, we are in an ideal position to help them anticipate what to expect and where they can access relevant information and assistance.
One aspect that particularly stands out for me is the need to consider how we are supporting those diagnosed with cancer who have developmental or intellectual disabilities, those who suffer from post-traumatic stress disorder, or those who are on the autism spectrum. These groups are reported to experience cancer-related disparities including decreased rates of screening, delays in diagnosis and treatment, higher levels of adverse events and pain, and increased mortality. Caring for these patients means we need to fully acknowledge neurodivergence – the wide range of variation in the ways individuals experience, think and function in the world. I would suggest we need to consider how we are currently caring for individuals in our cancer care environments who are triggered by loud noises or bright lights, those with excessive movements or repetitive behaviours, those who are non-verbal or experiencing dementia, those who are blind or deaf, or those who are challenged in their capacity to learn. Do we practice best care approaches which embrace neuroinclusivity?
As oncology nurses, I think we have a responsibility to take proactive steps to identify and acknowledge disabilities. And we need to intentionally take action to remove barriers or alter our cancer care environments to accommodate for those disabilities before diagnosis, during treatment, and in survivorship. By working together with individuals who have limitations and learn what is important to them, we will be better able to ensure they feel seen, heard and understood. In turn, it will mean they receive truly person-centred care.