Exploring Attitudes about Developing Cancer Among Patients with Pre-existing Mobility Disability

Abstract

Objective:

Mobility disability affects approximately 13.7% of the U.S. population, representing the most common disability type. People with mobility disability experience disparities in cancer screening and higher prevalence of some cancers compared to the general population. We sought to explore the attitudes of people with pre-existing mobility disability about their cancer diagnosis.

Methods:

We conducted open-ended individual interviews with 20 participants who had pre-existing mobility disability requiring use of an assistive device or assistance with performance of activities of daily living (ADLs), subsequently diagnosed with cancer (excluding skin cancers). Interviews reached data saturation and were transcribed verbatim for conventional content analysis.

Results:

Concerns coalesced around three major themes: sense of control over health conditions, seeking support, and recommendations for other people with disability seeking cancer care. Some participants described feeling a loss of control over their cancer diagnosis that they did not have regarding disability, while others suggested that disability presented greater challenges than their cancer diagnosis. Participants described seeking various forms of support, including emotional support (e.g., from friends and family), informational support (e.g., recommendations for seeking care), instrumental support (e.g., ADLs), and appraisal (e.g., self-reflection of personal qualities for fighting cancer). They provided recommendations, highlighting importance of self-advocacy and being attuned to changes in health status.

Conclusions:

We found that people with pre-existing mobility disability and cancer express complex attitudes towards their cancer diagnosis. Findings may inform efforts to improve quality of relevant supports to meet the psychosocial needs of this population.

Introduction

People with mobility disability constitute approximately 13.7% of the U.S. population, representing the most common disability type(1). People with disability experience health disparities, including for cancer screening services(2–4). Nevertheless, people with disability can have higher cancer rates(5) and higher cancer-related mortality(6) compared to the general population. They also experience cancer care disparities, notably lower likelihoods of receiving potentially life-saving surgery(7,8) or other standard treatments(9). Research interviews with people with disability have identified barriers to screening services and cancer care, including physical access barriers(10–13), inadequate preparedness among clinicians and facilities for accommodating disability(12,13), and challenges navigating health promotion services for cancer survivors(14).

Living with disability and subsequently developing cancer poses not only clinical complexities but also complicated personal responses. Several studies have conducted surface-level explorations of attitudes of people with pre-existing disability towards new-onset cancer. One study described the combination of cancer and pre-existing disability as a “double whammy(14). Others identified the effect of cancer on perceived body image(15) and need to adapt to worsening mobility limitations because of treatment side effects(11). As part of a larger mixed-methods study(16), we conducted interviews with people with pre-existing mobility disability to explore the psychosocial implications of a new cancer diagnosis. Their observations may inform efforts to improve quality and availability of supports for people with mobility disability undergoing treatment or seeking cancer survivorship care.

Methods

This study used qualitative descriptive methodology to explore the attitudes of people with pre-existing disability about developing cancer. The Massachusetts General Hospital (MGH)/Partners HealthCare Institutional Review Board (IRB) approved this study (protocol number 2019P002233). Participants provided verbal informed consent to interview procedures, including audio-recording. Below we report items required by the COnsolidated criteria for REporting Qualitative Research checklist.

Participant Recruitment

We recruited a total of 20 participants. Eligibility criteria included: mobility disability requiring use of an assistive device and/or assistance performing activities of daily living (ADLs) for at least one year preceding initial cancer diagnosis; history of cancer (excluding all skin cancers); 21–72 years of age at time of initial cancer diagnosis; and no prior cancer history. Given goals of our larger study, we aimed to include individuals from young adulthood to the leading edge of the “baby boom” generation (i.e., people born from 1944 – 1964). We posted information about the study on disability and cancer support networks, including support networks on social media (e.g., Facebook, Reddit, other online forums), disability-specific support groups (e.g., for spinal cord injury [SCI], post-polio syndrome, multiple sclerosis [MS], Parkinson’s disease, cerebral palsy), and the Partners HealthCare Rally research recruitment website.

Participants had to contact us to express interest in participating in our study. Eleven potential participants contacted us but did not meet eligibility criteria (mostly due to history of disability but no cancer). All participants deemed eligible were scheduled for an interview; eligible participants provided consent and completed the interview without dropping out or refusing to answer particular questions. We did not review medical records of participants.

Interview Protocol and Procedures

We developed an open-ended, in-depth interview protocol (online appendix) with modules addressing: social and medical history; aspects of disability, such as mobility functioning and performance of activities of daily living (ADLs); cancer history, including symptoms, diagnosis, treatment, and survivorship experiences; psychosocial implications and attitudes towards having both cancer and disability; and recommendations for other people with disability seeking cancer care. Given the sensitive nature of topics, the interviewer told participants that they could take a break or terminate the interview at any time; however, all participants completed the interview without breaks.

All 20 interviews were conducted by telephone by L.I.I. (MD, MSc), a woman professor of medicine and health policy researcher with extensive experience conducting in-depth interviews on wide- ranging disability topics. She did not have pre-existing relationships with participants prior to interviews. Only the interviewer and participant were present during each interview, which averaged 57 minutes (ranging 27–86 minutes). We did not provide interview transcripts to participants or conduct repeat interviews. Participants received a $50 gift card following interview completion in thanks for their time. A professional transcription service prepared verbatim transcripts of interview audio recordings; N.A. reviewed transcripts to ensure accuracy.

Analysis

N.A. analyzed transcripts with detailed oversight from L.I.I.; A.E.J., an oncologist, reviewed the face validity of findings. We conducted conventional content analysis(17), a type of descriptive qualitative analysis(18,19), that draws explicitly from data without over-interpreting results. We used a consensus-driven qualitative process(20) to iteratively identify and refine themes, confirming relevance to clinical practice. We did not use qualitative analysis software or specifically code texts. We reached data saturation with review of 20 transcripts. Results presented below focus on how participants viewed their cancer diagnosis, within the context of pre-existing disability.

Results

Table 1 provides demographic information about the 20 participants, who came from 11 U.S. states. Three major themes emerged from data concerning attitudes about cancer diagnosis. Themes are presented with verbatim quotations to exemplify key points.

Table 1. Demographic Characteristics.

N=20

Characteristic
Age at diagnosis, mean (S.D) years	59.6 (12.8)
Gender, n
Male	8
Female	12
Race, n
White	18
Non-white	2
Hispanic ethnicity, n	1
Cancer Type
Prostate Cancer	6
Colorectal Cancer	2
Ovarian Cancer	3
Non-Hodgkin lymphoma	2
Breast cancer	2
Thyroid cancer	2
Other†	3
Family history of their cancer type, n
Yes	4
No	5
Not reported	11
Underlying Disabling Condition
Spinal Cord Injury	5
Polio	5
Multiple sclerosis	2
Other‡	8

^†Hodgkin lymphoma, uterine, and cervical cancers

^‡Cerebral palsy, neuromyelitis optica, Friedreich’s ataxia, orthopedic injuries, amputation(s)

Sense of Control

Participants compared their sense of control with disability versus cancer, providing insight to attitudes. Some participants described feeling loss of control over their cancer diagnosis that they did not have regarding disability. “I’ve dealt with C5 [SCI],” said one man. “I can deal with physical damage, big time. … But there’s one thing that I couldn’t beat, was cancer. … It had control over me.” The man, in his late 50s who had been diagnosed with non-Hodgkin lymphoma approximately 10 years previously and had his SCI over 20 years earlier, continued:

With rehab … depending on how hard we work, we were going to get back on our [wheel]chairs, and we’re going to go back and be productive… That’s under our control. With cancer, there’s no control.

A participant in his early 60s who had mobility disability from multiple orthopedic injuries concurred about loss of control with cancer. “My back deal was put it back together and I’ll keep going,” the participant said. “The cancer thing was … totally a different mindset…. The cancer was survival. The back thing was mechanical… Anything mechanical, I figure I can work through… The cancer thing wasn’t mechanical. That was something I had no control over.” A participant in his late 60s with polio also described losing control with his prostate cancer diagnosis: “I had polio. Now I got cancer? …the polio never stopped me, but the cancer certainly has. It’s stopped me dead in my tracks… ”

In contrast, other participants described feeling that disability presented greater loss of control than cancer. “My whole philosophy … throughout becoming paralyzed and getting cancer… is, ‘Well, you have a choice. You stay where you are. Or you move on,’” said a man in his early 70s paralyzed by neuromyelitis optica. “Becoming paralyzed affected me a whole lot more than this prostate cancer.” About disability, however, the participant reported, “I never really said, ‘Why me?’ … Same thing with the cancer.” Another participant, who had polio and was in her late 60s, agreed: “Probably if I’d had some residual effects from it [cervical and uterine cancer], I would have thought a little bit more about it, but we seem to have [diagnosed the cancer] early, and we didn’t have any more problems with it.”

One participant in his early 70s who had polio described indifference towards disability and cancer. “I didn’t worry about either one of them,” he said, speculating that his experience with disability contributed to this attitude. “I grew up with the polio. So, the polio’s been there all my life. And I don’t know any different. I’m not like somebody that … had experienced a normal childhood and then was hit by [cancer]…”

Finally, one participant with a history of SCI described trying to take control over cancer treatment side effects but being prevented from doing so because of medicolegal complexities. The participant’s cancer had gone undiagnosed for months, despite substantial and unexplained weight loss. After being given chemotherapy, the participant experienced greater loss of appetite. The participant felt prescribed solutions were not helping and tried an approach that had worked in the past to heighten appetite – the use of marijuana products to stimulate “munchies”:

So, when I was losing all of that weight and throwing up … they were trying to get rid of my nausea with these pills. And that wasn’t working. So, I went to what I know. And that [marijuana] actually helped more than anything. The only times I would be able to actually eat when I was losing all that weight was when I smoked. Otherwise, I probably would have died.

While hospitalized, the participant arranged for a friend to provide edible marijuana products. However, hospital security searched the patient’s hospital room and confiscated these items. This angered the patient who felt marijuana products had provided control over appetite loss that was further impeding critical weight gain.

Seeking Support

Participants described importance of seeking various forms of support, especially emotional support, for navigating cancer care. Many turned to other people with disability. One participant, in his late 50s with SCI, compared the disability community to a herd of buffalo protecting its young: “Just picture all these buffaloes surrounding in a big circle, and you’re protecting the younger newbies that are coming into this community…” One participant with MS found that her experience seeking disability-specific support networks informed her strategy for seeking cancer support: “The National Lymphoma Association can pair you up … I was doing that just the same way that I did with MS…” Another participant, in her late 70s who had polio, described benefits from broader support networks: “I had just a great support team between my friends and my family… I think the fact that the word `cancer’ was never used …helped me keep up my spirits…”

Participants also sought support that included self-appraisal – identifying personal qualities that enabled participants to fight cancer. Often, participants recognized these qualities within themselves. A participant in her mid-40s with mobility impairment from an orthopedic injury appraised personal factors that helped her cope, notably “mind strength and … determination to do things.” She elaborated, “Having a disability does not make you weaker … I may have a weaker leg than somebody, but I could have a stronger mind than the next person. Or a stronger faith to get through things.” A participant in her mid-50s with cerebral palsy described emotionally acclimating to new circumstances. “Attitude is everything,” she said. “I never was mad, or I never blamed anybody… I’ve embraced this, and I’ve embraced the cancer in the same way.”

Participants reported receiving information about cancer from other people with disability. “The first thing I would do is ask for referrals from my community, from people like me in a [wheel]chair,” said a participant in his late 50s with SCI. “Like, ‘Do you guys recommend an oncologist?’ … I don’t … pick one out of a book like the Russian roulette … I go to my community first … word of mouth from my community.”

Participants sought instrumental support for tangible needs, especially during treatment. The same participant described his wife being his primary caregiver during treatment. “My wife was very supportive,” he said. “She stayed with me throughout the chemo … Not everybody has that luxury.” The hospital did not have necessary supplies to meet the participant’s disability needs, so his wife brought them to the hospital. Another participant in her mid-50s with SCI made arrangements with her home healthcare agency in anticipation of chemotherapy: “When I have chemotherapy… I need more hours with [home health aides] … So, like they were able to get me hours for a ride to chemo, so I don’t have to drive myself.” She also kept in touch with her caseworker and nurse: “I have been in constant touch with them … and they’ve been helping me set everything up.” Following removal of her ovarian mass, “my neighbor, who’s also my caregiver, she came over and put me to bed early. And she would get me dinner ….”

Recommendations for Other People with Disability Seeking Cancer Care

Participants provided recommendations for seeking cancer care, highlighting important considerations for their disability. They underscored importance of self-advocacy throughout cancer diagnosis and treatment, as well as in a broader sense. A participant with cerebral palsy in her mid-40s described standing up for herself during an uncomfortable confrontation with clinical staff:

Some of the staff would say, ‘Well, he [physician] only sees two wheelchairs a month,’ and I turn around and say, ‘I am not my chair. I am a person that he has seen now for 15 and a half years … Just make sure I’m on his procedure schedule and understand that I need extra time because I’m going to need assistance in changing.’

The participant described advocating for her needs following a subsequent cancer resection. She recalled telling her physician: “Dr. [SURGEON], I’m really concerned because when I was admitted for the first surgery … They put me in a diaper. Nobody came in and they left me in my bed …” She felt her physician was responsive, telling her, “Well that’s ridiculous. I can’t stay overnight and check on you, but I’m going to have my residents come in and check on you.” The participant reflected: “Because I said to him things like, ‘They didn’t treat me well overnight,’ he made sure that his residents came in to check on me for on-call. So again, did I whip them into shape or does he have the right person-centered care? … I think a little bit of both…”

This participant further described confronting her physician about accessibility: “Hey, you’re going to see an influx of folks with disabilities in the practice. Dr. [PHYSICIAN], how are you going to handle it?” Her physician responded: “Of course, I’ll see you. I’ll just put you on my procedure schedule … it gives me more time…” The participant emphasized:

Just be a dogged advocate for yourself, because I think that the healthcare institution, for a lot of people, it’s such a position of power. And you’re dealing with hospitals and oncologists and doctors, and there’s this perception that, ‘Oh, they know what they’re doing.’ … So many will wait for somebody else to come to their house or call them and make them do something, and that’s not the way it works.

The participant summarized the importance of self-advocacy: “People tend to take as gospel whatever their medical professional says … If it’s something that doesn’t seem right, … say something …. Be your own advocate.”

Another participant in his late 50s with SCI highlighted the broader importance of advocacy, speaking out about issues that raise concern: “If I see injustice, I’m advocating … sometimes I think the able-bodied community forgets people with disabilities have rights. And people with disability, if we don’t fight for rights, guess what? The ADA [Americans with Disabilities Act] gets watered down.”

In addition to emphasizing importance of self-advocacy, participants provided other recommendations for seeking care. A participant in her early 60s with SCI said, “What I tell all women with disabilities, … any change in anything … take it seriously! Go see someone … treat it immediately.” A participant in his early 60s with a mobility impairment resulting from an orthopedic injury concurred: “Go see a urologist … Don’t keep waiting, think[ing] it’s going to go away.”

Discussion

Study participants had a range of pre-existing disabling conditions and subsequently developed different types of cancer. Nonetheless, common themes emerged across participants, relating to views of cancer within the context of disability. Some participants felt that, unlike disability, cancer diagnosis presented unprecedented challenges and augured a loss of control. While they could accommodate or mitigate aspects of disability through appropriate rehabilitation therapy, environmental modifications, and/or assistive technology, cancer presented unpredictable threats – the cancer would take its own course. However, other participants suggested that disability was more difficult than cancer.

Previous health experiences influenced participants’ relative attitudes towards cancer versus disability. Regardless of attitudes towards cancer, however, participants concurred about importance of seeking support, which came in four forms(21): informational (i.e., consulting other people with disability about how they managed cancer), instrumental (i.e., physical assistance with increasing need for support with ADLs), emotional support (i.e., empathy and encouragement from family members and friends), and appraisal (i.e., recognizing personal qualities that enable participants to fight cancer). In making recommendations for other persons with disability, participants highlighted importance of self-advocacy, specifically throughout cancer diagnosis and treatment.

Patients’ attitudes towards cancer diagnosis and support-seeking behavior may be influenced by interactions with or input from their clinicians, especially those with whom patients have long-standing relationships. Primary care physicians typically conduct routine screening and direct follow-up diagnostic testing; they therefore play important roles as patients confront a new cancer diagnosis. However, a systemic review of the perspectives of primary care physicians on their role in cancer care identified barriers to supporting these potentially complex patients, including lack of skills in discussing emotional impact of cancer, inadequate access to mental health referrals, lack of time and adequate renumeration for providing care, and lack of formal care standards(22). Existing barriers to receiving cancer care may be amplified for people with disability, who present with more complex care needs. Indeed, people with disability report difficulty pursuing health promotion strategies following cancer diagnosis (i.e., identifying health providers equipped to manage cancer and disability, appropriate support groups, accessible fitness centers, tailoring nutritional needs, and making lifestyle adjustments)(14). Both primary care physicians and oncologists involved in making cancer diagnoses should be prepared to meet patients’ psychosocial needs or direct patients towards supports appropriate to their needs.

Participants frequently sought recommendations from other people with similar disabilities about where to pursue cancer care and assistance with ADLs during treatment. Informational support from other people with disability can help patients identify accessible medical facilities for both preventive screening and treatment, as well as identify healthcare providers equipped to manage cancer care in the context of underlying disability. Previous studies highlighted physical access barriers to cancer treatment for people with disability, notably inaccessible medical equipment(10–13), requiring that people with disability plan ahead in anticipation of such challenges to avoid delays in care. Arranging other forms of support (i.e., identifying caregivers who could provide physical assistance with ADLs over the course of treatment) is also critical, as cancer can exacerbate mobility impairments and reduce independence with ADLs(11).

Participants’ recommendations for other persons with pre-existing mobility disability who develop cancer suggested that people recognize the importance of personal awareness of health status and care needs, placing responsibility on patients to prepare for appointments (i.e., preparing informed questions for clinicians) and feeling comfortable switching care teams to ensure sufficient accommodations. Participants concurred about the importance of self-advocacy, especially given erroneous assumptions and attitudes about disability that may permeate care settings(23). Attitudinal barriers can impact clinician-patient trust, affecting patient satisfaction with care(24). A long history of stigmatization of disability(23) in the medical community may contribute to patients’ concerns about inequitable treatment, evident by their comments about needing to advocate for their rights under the ADA. Nevertheless, self-advocacy may assume an active role in cancer care, improving trust and communication with clinicians, and quality of care(25). Given that people with disability may be at increased risk of experiencing healthcare inequities, it is crucial that they engage in self-advocacy throughout care.

Study Limitations

Our study shares limitations of other qualitative research studies, notably concerns about generalizability. We interviewed only 20 participants, and all willingly volunteered to participate. Others, who would have declined participation, might have different views. For example, our finding that individuals with disability use organizational and disability-related support networks could be a function of recruiting individuals who use those networks, suggesting recruitment bias. With 20 participants, we could not represent the wide diversity of mobility impairments followed by cancer diagnoses. Nevertheless, our findings suggest salient themes that are highly transferrable to various healthcare settings seeking to improve cancer care for people with disability.

Clinical Implications

People living with disability often adapt physical and social environments to their needs, enjoying a good quality of life and experiencing a sense of control(26,27). However, managing a cancer diagnosis on top of a pre-existing disability can present a “double whammy”(14). The unpredictable nature of cancer can compound complexities of managing disability, presenting unique challenges that neither patients nor clinicians may be well-equipped to address(14). The psychosocial implications of the “double whammy” can influence health-promotion and wellness behaviors, including seeking mental health supports(28). Anticipating care needs and improving access to psychosocial supports may improve outcomes.

Conclusions

People with pre-existing mobility disability and cancer have complex attitudes towards cancer diagnosis, with some suggesting that cancer presents unprecedented health challenges and a loss of control, compounding efforts to manage disability, while others view managing disability as more demanding. Despite requiring specific forms of support unique to their needs, people with disability and cancer identify barriers to obtaining the full range of treatment and supportive care. They highlight attitudinal barriers in clinical settings that affect quality of care and emphasize importance of self-advocacy. These findings could perhaps inform efforts to improve cancer care for persons with pre-existing mobility disability.

Data Availability

Data are not available because the detailed nature of the information could allow identification of individuals, which would violate IRB privacy/ethical restrictions and breach our agreement with participants.