INTRODUCTION
The scholarly literature defines cancer disparities as:
social inequalities in the prevention, incidence, prevalence, detection and treatment, survival, mortality, and burden of cancer…as linked to experiences and policies involving socioeconomic position (e.g., occupation, income, wealth, poverty, debt, and education) and discrimination (Krieger, Reference Krieger2005, p.7).
Similarly, Braveman (Reference Braveman2006) suggests that the terms “health disparity” and “health inequality” can be used interchangeably, and refer to potentially avoidable differences between disadvantaged social groups that could be shaped by policy. To pursue health equity means to pursue the elimination of health disparities/inequalities (Braveman, Reference Braveman2006).
Ensuring equitable access to cancer care is important because of the high prevalence of cancer, the often complex path of treatment options, and the time sensitivity of care (Maddison et al., Reference Maddison, Asada and Urquhart2011). Questions about cancer disparities are commonly examined by health services researchers, typically using quantitative approaches and describing patterns of service utilization. In a recent literature review, Maddison and colleagues (2011) determined that cancer care was most inequitable at the beginning (i.e., screening) and end (i.e., end-of-life care) of the continuum of cancer care. Personal income was shown to have the most consistent influence on inequity in terms of access to screening, and geography and age were the most influential factors for end-of-life care (Maddison et al., Reference Maddison, Asada and Urquhart2011). The authors highlight the importance of understanding current information about inequities in care in order to mount targeted policy and clinical interventions to address them (Maddison et al., Reference Maddison, Asada and Urquhart2011).
Krieger (Reference Krieger2005) reports that rigorous and critical frameworks, research questions, and methods are needed from multiple disciplines to define and address inequities in cancer care. A literature search was undertaken to identify health professionals’ views regarding disparity in cancer care. Although no publications were found that addressed the health professionals’ views or experiences, two publications outlined health professionals' efforts to address inequities in cancer care. Members of the American Society of Clinical Oncology (ASCO) have published a Policy Statement that articulates the Society's commitment to work with stakeholders to reduce disparities through the development of policies that guarantee equal access to healthcare (Goss et al., Reference Goss, Lopes and Brown2009). The document “Action for London 2007–2012: A Nursing Vision for Cancer Care in the Capitol” outlines a citywide initiative undertaken by nurses, to promote equity and cohesiveness in cancer care in the city (Cancer Action Team, 2008). Specific themes include challenging inequities in cancer care (e.g., addressing prisoners’ access to care), responding to ethnicity in cancer care, and developing a competent and educated workforce (Cancer ActionTeam, 2008). Although such initiatives speak to the desire to reduce disparity in cancer care, the health professionals’ experiences, opinions, and views were not explicitly reported.
Health professionals working at the front lines of care can offer unique insights into the struggles and challenges encountered by patients receiving cancer care. The purpose of our study was to understand how care providers in the Canadian context defined and responded to disparity in cancer care, and to learn about the different contexts in which they bear witness to these disparities.
METHODS
Recruitment and Sample
Study participants were members of the interdisciplinary group entitled “Knowledge Exchange for Equity Network” (KEEN), established as one component of the mixed methods project “Negotiating Equity: Toward the elimination of disparities in cancer care” which is funded by the Canadian Institutes for Health Research (Sinding, Reference Sinding2010; Sinding et al., Reference Sinding, Hudak and Wiernikowski2010). KEEN members were purposively selected based on their capacity to comment knowledgably about frontline cancer care, and their interest in care equity. In addition to their role as key informants in this study, KEEN members also contribute to the Negotiating Equity study as consultants and translators/catalysts (Best et al., Reference Best, Hiatt and Norman2008). All members of KEEN were invited to participate in the interviews that are the basis for this article. Six health professionals, none with < 15 years of professional experience, participated in interviews. They worked in a range of care settings (inpatient, outpatient, and community care) across the continuum of care (prevention, cancer treatment, and palliative care). Half were based in the largest city in the region (where the regional cancer center is located), and half were based in the surrounding communities. Areas of professional practice included social work, nursing, public health, and community development. Roles and mandates were varied and included: social and personal support to patients; individual/family counseling, patient navigation; direct patient care; advocacy; palliative care; and public health education.
Approval to conduct this study was provided by the Faculty of Health Sciences Research Ethics Board at McMaster University, Hamilton, Ontario, Canada. All participants provided informed consent prior to being interviewed.
Interviews and Analysis
Gathering and representing participants’ perspectives and experiences unfolded over several iterative stages. Four members took part in a focus group interview, and two in individual interviews that were audiotaped and professionally transcribed. Interviews were designed to draw forward participants’ understandings and experiences regarding equity and disparities in cancer care. The interviewers (JG, PM, and DFL) asked the participants about what equity in cancer care meant to them, and what disparity or inequity meant. They then solicited stories and reflections about equity in care, including best practices to secure equity. Questions about disparity – about participants’ witnessing of it, their responses, how and why it happens – followed.
All members of the research team read the transcripts and shared our responses to the rich discussion, highlighting comments we found particularly poignant or noteworthy. A preliminary thematic analysis was undertaken (Wilkinson, Reference Wilkinson and Silverman2004), and sent to members of KEEN. The research team reviewed the findings from the analysis with the KEEN members in a conference call as a means of member checking in order to ensure our interpretation resonated with them (Cresswell, Reference Cresswell1998). A second stage of thematic analysis was undertaken and was the basis for this article (Wilkinson, Reference Wilkinson and Silverman2004). This analysis incorporated feedback from members of KEEN during member checking and responses from all members of the research team to the preliminary findings. It was in this iterative process that the meaning of discontinuities in care emerged as an even more central study theme. Representative quotes were identified to highlight the themes.
The draft of findings was reviewed by all members of KEEN at a face-to-face meeting with members of the research team. The participants validated the thematic representation of the findings and assisted with the identification of points of emphasis for the discussion section of this article.
RESULTS
Asked to discuss inequities in cancer care, participants focused on three themes: socioeconomic factors/discrimination and bias, providers’ beliefs about care, and gaps in care. One modifying factor, social support, was also noted. The first set of concerns (discrimination and difficulties related to socioeconomic factors) were typical of the literatures on healthcare disparities, and thus we afford less space to them here although the professionals’ extensive creative work in addressing these inequities is important to note. In other scenarios, participants highlighted systems’ gaps and instances where the patient experienced distress that were less obviously related to the conventional definitions of disparity.
Socioeconomic Factors/Discrimination and Bias
Not surprisingly, participants identified situations in which inequities in care were associated with socioeconomic factors. Patients without adequate financial resources were reported to experience challenges regarding accessing transportation, medications, and supportive care. There were several examples of discrimination and bias. For example, there was a reported “sense of less tolerance” for persons diagnosed with substance abuse problems who came for cancer care. Another participant reported that “people [health professionals] are judgmental” and described how care was offered in a “begrudging” manner to a man with pancreatic cancer and a history of alcohol use.
Providers’ Beliefs about Care
Participants recounted situations in which a provider's beliefs about and orientations to care gave rise to differences in care between patients. One participant reflected on her observations of interactions in which a patient sought alternative or complementary approaches to cancer treatment. Describing how the team responded to a patient who made a decision at odds with what the team recommended, a participant said: “I think it's not so much the care that changes, I think it's the attitude. So the attitude that's applied to the care.” Another participant echoed this comment: “You just see a change in the team…the team not being pleased that this patient's not agreeing with their little plan.”
Gaps in Care
Participants drew attention to gaps in care – gaps in the system that generated differences in care among groups of patients, and gaps that arose in the care of individual patients. They identified narrow service mandates, and patients’ lack of access to the primary care services that often provided a link to other care providers. Participants also spoke about how individual patients (and in some cases, their wider communities) sometimes experienced disappointment and a sense of distress upon being transferred among providers or sites of care. Some gaps and inequities in service were reported to arise because skilled professionals, such as community care nurses or social workers, were unavailable.
An absence of accessible and necessary services was also identified as a gap in care. Inequities were reported to arise because “people aren't hooked up to the services they could have.” It was suggested that preventative strategies such Pap screening through government-funded programs were made very accessible to some groups of women, but were not nearly as accessible to others:
I know in terms of equity, we're missing the adult population because we have the sexual health centre and that's only mandated for certain age groups. I'm always raising ‘OK, so what about the women who aren't in high school?’
[People who] don't have a family doctor or if they don't have a gynecologist that sets them up for not having the treatment they need or that sets them up for not getting the prevention….
Furthermore, gaps in the continuum of care were reported to arise when the patient was discharged from the cancer center to a general hospital or to the community. Our participants highlighted the emotional impact of this change in primary caregiver on the patient. The participants observed disappointment and confusion when patients had expectations of being followed by the specialized team at the cancer center and these were not realized:
Sometimes from the patient's perspective they feel isolated because they've been seeing the specialist and now, well, ‘nothing can be done so you're sending me to my family physician.’ And they don't feel that he has the expertise, right? So you feel bad for the patient in that respect.
There needs to be a consistent approach to, you know, this is how far I can go with you. Or [else] there's an expectation that they [oncologists] will be right there to the end and it's devastating to some folks [when they are not].
The participants also reported that disparities in cancer care can arise when healthcare professionals do not fully understand how people from nondominant cultures experience illness and interactions with the healthcare system, including interactions related to transfers among providers. One participant recounted the sense of “abandonment” experienced by a patient whose care had been transferred from the regional cancer center. The patient, an Aboriginal man, felt betrayed, a feeling that then extended through his social network. The participant explained:
I've had people actually say to me those words: they feel abandoned and they feel hurt and they feel very angry and very scared. And that information will travel within their family system and out into the community. [It's] that trust issue again, you know, ‘we were vulnerable, we opened up, we trusted, now they've left us. They don't want any more to do with us.’
Modifying Factor: Social support
Participants described how the availability, skills, and resources of the patient's personal social support systems could influence the nature and amount of care that patients received. Having supports in the form of family members or other advocates could help the patient obtain the services they wanted or needed, and assist the patient in dealing with the complexities of the healthcare system. For example, the patient's advocate could assist with minimizing gaps in the continuity of care.
We see people who haven't been hooked up to that services yet so you know it depends… maybe their family member is resourceful. I've sometimes had referrals that have come just because somebody has done some research over the internet and they find out that kind of service is available.
One participant recounted the story of a man who wanted to die at home. The hospital team felt that his medical needs were too great to allow this. However, his daughter and wife “insisted on him going home” with the daughter returning from university to contribute to his care.
It ended up being a success. They were able to get lots of nursing and support out in the home with his insurance coverage and…which is what he really wanted and we didn't think possible so it was nice to see that be able to happen for him. And the daughter really advocated for that so it was great to see that be a positive thing for that patient.
The family member or advocate can also help deal with the complexities of insurance and care systems. In speaking about the time and effort it takes to secure coverage for outpatient healthcare costs, and to mobilize services, a participant noted:
If you don't have either family or an advocate working with you to get that funding, to get that insurance coverage, to get the services at home you have to jump through so many hoops to get that coverage. If you don't have somebody working for you, you're probably not going to get that coverage.
As one participant summarized, patients who have family members who can act as advocates “do get more just by virtue of having that person on the line.”
DISCUSSION
In the academic and policy literature, disparities in cancer care are linked to “experiences and policies involving socioeconomic position…and discrimination” (Krieger, Reference Krieger2005, p. 7). The observations and opinions regarding disparities in cancer care that were offered by the frontline healthcare professionals in this study validate these points. Participants drew attention to how low-income people do not always have access to cancer screening, and do not have the same discharge options as patients with greater financial resources. They also reported instances of discrimination. They also drew attention to issues rarely highlighted in the literature on cancer disparities. They focused on health systems issues, including how care is experienced by patients at personal, team, hospital, and community levels, and the significance of social supports in accessing formal care services.
In reflecting on disparities in cancer care, participants in this study consistently pointed to health systems issues. They highlighted, for example, how some people's access to cancer care is compromised because they do not have a family physician, and how changes in the community care labor force renders dying at home impossible for some people. Similarly, Steinberg (Reference Steinberg2008) points to causes of disparity linked to deficits in the healthcare infrastructure where health professionals' inadequate preparation (in terms of resources or education) contribute to the lack of equitable care, most often affecting those living in poorer neighborhoods.
Central to respondents’ reflections about disparities were patients’ experiences of care. Here, transfers among providers and sites of care were not only about logistics and feeling lost between systems. They were about relationships; about the tremendous significance to people with cancer of their relationships with their healthcare providers, and the confusion and sense of abandonment that patients can experience when those relationships are perceived to be damaged, or are withdrawn. Similarly, Stienstra and colleagues (Reference Stienstra, D'Aubin and Derksen2012) identify the challenges experienced by persons with disabilities when their formal healthcare providers change. The issue of changes in relationships with healthcare providers was raised especially poignantly in relation to Aboriginal patients. Here, individual-level interactions between provider and patient unfold against a backdrop of oppressive social relations. A relationship of care and trust in this context is especially precious. A disrupted relationship, in this context, is an echo and repetition of much broader scale historical, social, and political betrayals, and its consequences can extend beyond the individual to the broader community.
Participants further noted that patients with robust support networks, where individuals can provide care and have the time, resources, and skills to advocate on their behalf, are advantaged. In its emphasis on the significance of social support in the current healthcare context, participants’ commentary can be linked with feminist scholarship on informal care. Feminist researchers have documented how transformations in the welfare state, including the contraction of the nursing workforce, have effected a transfer of responsibility for patient care to families, and primarily to women (Graham, Reference Graham1991; McKeever, Reference McKeever1996; Armstrong & Armstrong, Reference Armstrong and Armstrong1999). Links between social support and health outcomes are well established (Berkman et al., Reference Berkman, Glass and Brissette2000; Reblin & Uchino, Reference Reblin and Uchino2008; Uchino, Reference Uchino2009). Participants helped us understand a specific point of connection between social support and cancer care disparities: if access to cancer care in the current health systems context is to some extent contingent on the actions of family members and friends, then care accrues more readily to people with strong social networks, and is unequally distributed by the capacities and resources of those social networks (Sinding, Reference Sinding2004). A nurse-led community-based case management program has been shown to address supportive care needs and improve care coordination, and can be used to address the inequalities that arise from people's differential access to informal supports (Howell et al., Reference Howell, Sussman and Weirnikowski2008).
It is not uncommon for continuity of care to receive attention in discussions about access and equity (Siminoff & Ross, Reference Siminoff and Ross2005). What is unique about the findings here is the emphasis respondents placed on the meanings of discontinuities and the lived realities of being in the gaps between systems; the meanings to patients, families, and communities of the routine patient processing that happens in cancer care, and the specificity of meanings by social and cultural group. The reflections of participants in this study suggest that the “burden of cancer” will continue to be inequitably distributed, unless these specific meanings are taken into account.
Finally, in an extension of the point just mentioned, respondents in this study made clear that for them, equitable care is marked not only by equal access to care and by the absence of discrimination, but by welcoming, productive, respectful relationships between providers and patients within and across systems of care. Here, as in other studies, respect for and responsiveness to patients’ choices, and patients’ cultures and communities, were vital elements of equity (Beagan, Reference Beagan2003; Kagawa-Singer et al., Reference Kagawa-Singer, Dadia and Yu2010; Surbone, Reference Surbone2010).
Discussions of cultural competence sometimes assume that only socially marginalized or racialized patients have “culture.” However, patients who occupy privileged positions in the social structure (i.e., who speak English well and easily, and have many years of formal education and high incomes) also come to cancer care with a particular set of perspectives and orientations. Patients from the dominant group, meeting with health professionals, are often meeting with people whose professional, institutional orientation matches their approaches to illness, health, and institutions as well as their approach to, and sense of, entitlement regarding advocacy. The cultural advantage such patients enjoy in cancer care is emerging as a theme in other arms of this study (Sinding et al., Reference Sinding, Miller and Hudak2012), and has been reported by Huang et al. (Reference Huang, Groome and Tyldesley2001) who postulated that well-educated patients from wealthier neighborhoods were most likely to be more informed about medical matters, and better equipped to negotiate their cancer care.
Marks (Reference Marks2006) contends that a health equity agenda, to be effective, must be embedded in local health system monitoring and decision making. From this study, we offer a particular interpretation of this advice. Health equity agendas are already embedded in the watchfulness and skill sets of many frontline care providers. The micro-level equity-promoting decisions and actions that they take merit much more attention, and broad support. We also noted from this study the importance of involving care providers, across professions and teams, at the front line in defining health equity agendas, drawing on their intimate knowledge of how care actually unfolds for patients and what care means to them.
Members of KEEN discussed the struggles they faced as practitioners working to address disparities in care. They described in particular the personal conundrum that arose when they witnessed instances of discrimination. They expressed concern that challenging a colleague's comments or actions might be destructive to their professional relationship. They also reflected on their own relationship to systems constraints and gaps. They described the pressures they sometimes faced to transfer or refer patients when the necessary resources were not in place, and their sense of responsibility to mend gaps in care. The courage, creativity, and persistence required to do this work was apparent.
The findings of this study must be interpreted in light of the small number of respondents, who represented particular health disciplines. However, study participants, with their many years of experience and their various positions in cancer care, were well positioned to provide insight and reflection on issues of equity and disparity in cancer care. Also, our several rounds of engagement with them and the iterative process we engaged lent credibility to the findings.
The importance of KEEN members’ perspectives and insights in the knowledge translation stage cannot be overstated. Several collaborative initiatives are currently being undertaken by the KEEN members and researchers to share study findings through presentations at both the local level and at national conferences. KEEN members have facilitated discussions among colleagues about disparity at the front lines of cancer care using their personal experiences, the study findings, and an artists’ representation of these findings. The dissemination of findings in the respective workplaces of each KEEN member is an integral phase in the knowledge translation process (Graham et al., Reference Graham, Logan and Harrison2006). As the Negotiating Equity project continues to unfold, the results from this component of the study will contribute to a broader, fuller, more nuanced picture of inequities in cancer care in our region and how they can be addressed.
ACKNOWLEDGMENTS
We thank the healthcare providers who participated in this study; our work together was a source of insight and inspiration. The Canadian Institutes of Health Research (CIHR) funds the study “Negotiating Equity: Toward the Elimination of Disparities in Cancer Care” and provided the salary award to Dr. Sinding that enabled this research. At the time of this study, Dr. Miller was undertaking a postdoctoral fellowship in the School of Social Work and she held the Raymond and Margaret Labarge Post-doctoral Fellowship for Research and Knowledge Application for Optimal Aging.
