Aboriginal health: Understanding cervical cancer screening behaviours using the HBM

Nina Arboine
Nov 1, 2020
15 min read

Updated: Nov 10, 2020

Cervical carcinoma is a type of cancer that occurs in the cells of the cervix. Various strains of the human papilloma virus (HPV), a sexually transmitted infection, plays a pivotal role in causing most cervical cancers. When exposure to HPV, the body’s immune system typically presents the virus from doing harm. In a small percentage of people, however, the virus survives for years, contributing to the process that causes some cervical cells to become cancerous cells (CCS, 2020). In Canada, cervical cancer ranks as the 14th most common cancer amongst women and the 4th most common cancer amongst women between the ages of 15 and 44 years of age (HPV and Cancer, 2018). According to Canadian Cancer Society (CCS) (2020), it is estimated that 1,350 Canadian women will be diagnosed in 2020, with an estimate of 410 will died from the disease. In Canada, high mortality from cervical cancer in the 1950s has change to rates that are among the lowest in the world through the introduction of the papanicolaou test (Pap test). The lifetime risk of being diagnosed with cervical cancer has fallen from 1.5% to 0.66% and the risk of dying has fallen from 0.92% to 0.22% (Dickinson et al, 2012).

Despite declining incidence and mortality associated with cervical cancer in recent decades, subpopulations are known to suffer disproportionately from this disease compared to national averages, including sexually active young women, minority women with language difficulties, and women with specific cultural health beliefs are at risk for cervical carcinoma. The Aboriginal populations are one of the sub-populated groups to be of a greater risk for developing the cancerous disease. Many factors may contribute to the observational cervical cancer disparities among Aboriginal include, lack of healthcare facilities and providers in their region, poor health behaviours and poor communication with healthcare providers, and lack of transportation to healthcare clinics. Socioeconomic status such as education, religion/culture, income status, as well as environment contribute to this observed disparity in cervical cancer incidence and mortality rates. (Zehbe et al, 2016).

The Health Belief Model (HBM) was originally developed in the 1950s by social psychologists in the U.S public health services named Irwin Rosenstock, Godfrey Hochbaum, S. Stephan Keels and Howard Leventhal to explain the widespread failure of people to participate in programs to prevent and detect disease. Later, this model was extended to study peoples’ response to symptoms and their behaviours in response to diagnosed illness, specially adherence to medical regimes (Strecher & Rosenstock,1997). In 2008, Champion and Skinner articled on the HBM theory focused on two aspects of individuals’ representations of health and health behaviour: threat perception and behavioural evaluation. Threat perfection was construed as two key beliefs: perceived susceptibility to illness or health problem, and anticipated severity of the consequences of illnesses. Behavioural evaluation also consisted of two distinct sets of beliefs: those concerning the benefits or efficacy of a recommended health behaviour, and those concerning the costs of or barriers to enacting the behaviour. In addition, the model proposed that cues to action can activate health behaviour when appropriate belief are held. These ‘cues’ include a diverse range of triggers, including perception of symptoms, social influence and health education campaigns. Finally, an individual’s general health motivation or readiness to be concerned about health matters. The HBM has been used across mainstream and racial/ethnic minority populations to examine beliefs about cervical screening behaviours .

As Figure 1 indicates, the HBM has been applied to the prediction of an impressively broad range of health behaviours among a wide range of population.

This blog aims to explain preventive health behaviours rather than behaviours in time of illness in examining cervical carcinoma amongst Aboriginal women. Major health behaviours emphasized by the HBM focus on preventive measures of exposure of disease. I will take a multilevel approach utilizing the HBM through examining the following: perceived susceptibility, perceived severity, perceived benefits, cue to action and self-efficacy.

Perceived Susceptibility

The perceived susceptibility refers to beliefs about the likelihood of getting a disease or condition. Perceived risk of contracting a disease refers to individuals’ subjective perception of their susceptibility to the disease (Lee et al, 2020; Strecher & Rosenstock,1997). Cancer is indiscriminate, crossing boundaries and evoking feelings of anxiety, depression, fear and anger (Lee et al, 2020). Aboriginal culture share these same feelings, but how these emotions are uniquely interpreted through culture beliefs and values of wellness and illness influence health behaviours. It is believe that to say the word “cancer” is asking for the disease to be brought on them (Black, 2010). Thus, it may be not common for some Aboriginal culture to discuss cancer due to beliefs in the power of language. Almost 20% of Aboriginal women when surveyed on knowledge, attitudes and beliefs, and behaviours regarding cervical cancer screening believed that cervical cancer meant death. When asked if there were things a women could do to prevent or control cervical cancer, over 25% of women respond as ‘no’ (Smith, Chrisoher & McMormick, 2004). Perception of not being at risk for cervical cancer has been verified as a reason for not obtaining the recommended cervical cancer screening (CCS) (Zehbe et al, 2011; Zehbe et al, 2016; Maar et al, 2013 & ). Furthermore, a lack of knowledge and misinformation about cervical cancer, psychosocial beliefs about cervical cancer and perceived barrier to screening and structural barrier to healthcare access had also been identified as a reason for not obtained a CCS (Maar et al, 2013 & Zehbe et al 2016). Among this target group a substantial proportion of Aboriginal women perceived CCS as an unnecessary diagnostic procedures, rather than preventive health measures (Maar et al, 2013). In the study Black (2010), showed Aboriginal women do not view preventive health, such as cancer prevention as a priority; as a result they have an increased risk for the disease because of their curative rather than preventive health practice. The most prevalent finding amongst the research studies was that all women of an older age were less likely to participate in cervical cancer screening, having lower rates of screening than younger women. Aboriginal women of childbearing age are more likely to have a routine screening. However, once past the childbearing age, screening rates decline as many women associated it with prenatal care. Thus,there is need for nurses to emphasize that educational programs be developed targeting older women past child bearing years and for further exploration of CCS (Maar et al, 2013 & Zehbe et al 2016). In this regard, Aboriginal women do not perceive their own vulnerability to cervical cancer and do not see themselves at risk (Zehbe et al, 2016).

The following is a video discussing the importance of CCS for Aboriginal women.

Perceived Severity

The perceived severity of a disease refers to the severity of a health problem as assessed by the individual and amongst social peers and family. This variable refers to feeling about the seriousness of contracting an illness or leaving it untreated include the evaluation of medical/clinical consequences like death, disability and pain or social consequences such as effects of the condition on work, family life and social relations (Lee et al, 2020; Strecher & Rosenstock,1997). Aboriginal women believe that cervical cancer is a severe disease and have concluded that getting cervical cancer would have serious medical, social and economical consequences for them; than they would be more likely to obtain CCS. Cervical cancer is preventable by early detection of precancerous lesions during screening. The relatively high incidence rates obverse among Aboriginal women is like due to low uptake of cervical screening (Zehbe et al, 2016). In Quebec, the prevalence of cervical cancer in the aboriginal population was found to be three times that in other Canadians, and the cervical cancer mortality rate was found to be four times in other Canadian women. Whereas, in British Columbia, it was six times more in comparison to non-Aboriginal women. Between 1991-2010 the mortality gap declined, however, the mortality for Aboriginal women was still double when comparing non-aboriginal women (Ahmed, Shahid & Episkenew, 2015).

Research specific to Aboriginal women has indicated culturally specific barriers to CCS, such as lack of knowledge about cervical cancer and screening, medical mistrust, lack of culturally appropriate healthcare providers and fear of negative screening results (Lee et al, 2020). It had been indicated by Lee et al (2020) accordance to the National Health Interview data, 81% of women aged 21 to 65 report a recent Pap test. Aboriginal women, in contrast have been found to have lower rates of screening with 50% to 80% ever receiving a Pap test and around 62% to 82% having review a Pap test within the past 3 years. Further research would need to be conducted to cross examine the various tribes. Lee et al (2020) found that Aboriginal women tend to talk to friends and family rather than healthcare providers to received health-related information. Informal communication between friends and family through story telling or talking circles is a common way for Aboriginal women to obtain health information. Aboriginals use the tradition of oral communication as a method of sharing and remembering experiences. The sensitivity of this topic may oppose traditional ways of communication for Aboriginal women due to its uncomfortable nature; therefore, it is imperative for healthcare providers to address the topic of cervical health in a culturally sensitive and appropriate manner.

Perceived Benefits

Even if a person perceived personal susceptibility to a serious health condition (perceived threat), whether this perception leads to behavioural change will be influenced by the person’s belief regarding the perceived benefits of the various available action for reducing the threat. Aboriginal women must believe that a course of preventative behaviours available would be beneficial in reducing the risk of getting cervical cancer. Cervical cancer is one of the most preventable malignancies. The significant reduction in cervical cancer incidence observed across Canada attests to the efficiency of existing screening programs. No other cancer is as suitable for primary and secondary prevention as cervical cancer. The reason for the availability of effective protection from this malignancy is due to CCS and by vaccination known as Gardasil 9 (which is not discussed in this blog) (R. Manitowabi, personal communication, October 30, 2020). The benefit for Aboriginal women to participate in routine cervical prevention would lead to decreased mortality and morbidity rates. Building trust, positive relationships and support will help encourage more women to participate in CCS through

Bring services to the women who live in remote communities and offer drop-in appointments;
Build partnerships in communities of Aboriginal women;
Create brochures or other educational material that reflect the lives of Aboriginal women;
Educate women from a young age about the importance of cervical cancer screening and the importance of the HPV vaccine;
Use of creative technology for hard-to-reach populations, e.g. self-collection;
Organize a day or week dedicated to cervical cancer screening would help overcome the barrier of lack of availability of health care providers, especially in remote reserves;
Provide subsidization if there is a cost associated for CCS. (In Ontario, CCS are provided at no cost in most healthcare settings) (R. Manitowabi, personal communication, October 30, 2020).

The following video shares a story told by Marion who gives her perception of health, wellness and CCS from an Aboriginal women's point of view.

Perceived Barriers

The perceived barriers to action refers to the negative aspects of health-orientated actions or which serve as barriers to action and/or that arouse conflicting incentives to avoid action. It also refers to the potential negative aspects of particular health action may act as impediments to undertaking recommended behaviours (Lee et al 2020; Strecher & Rosenstock,1997). Black (2010) and Maar et al (2013) identified Aboriginal women who had personal experience or heard from their social community, CCS process perceived negatively due to causes of pain, bleeding and lack of understanding. Language difficulties and lack of a trusting relationship with the healthcare provider were barriers to receive care. In addition, factors that appears to cause negative perceptions and act as a barrier to CCS was a previous history of trauma like childhood sexual abuse, intimate partner violence, and trauma related to medical procedures. Interestingly noted Smith, Christopher & McCormick (2014) saw obesity and overweight was reported as a barrier for CCS. Women were less likely to be screened, even after adjustments for known barrier. Cancer prevention strategies depend on improving nutrition, achieving healthy body weight, increasing physical activity and eliminating the use of commercial tobacco. In Aboriginal tradition, the health and well-being of an individual flows largely from the health and social make-up of the community. The success of cancer screening programs lies in accessible information, lifestyle education, continuity of care, role modelling, non-smoking initiatives and strong partnership with Aboriginal communities. Although the provincial and territorial governments are primarily responsible for creating awareness of cancer screening and prevention for Aboriginal women, effective implementation of cancer education, awareness and prevention programs can be achieved only in collaboration with Aboriginal communities at multiple levels (Ahmed, Shahid & Episkenew, 2015). Respect, acknowledgment and active listening and responsiveness to their needs in a culturally appropriate manner are prerequisites to culturally sensitive cancer prevention and screening services (Smith, Christopher & McMormick, 2004). Health promotion of cancer prevention strategies requires the use of culturally and linguistically appropriate techniques. Some of the key steps in promoting community engagement and empowerment are the establishment of community-governed health services and community-driven programs; the incorporation of cancer prevention and screening programs into community-based programs and services; the ability to deliver models of care that embrace indigenous knowledge systems; and a robust indigenous managerial and clinical workforce, with strategies to enhance the supply of First Nations physicians who can advance cancer prevention in a culturally respectful and safe manner (The Northern Ontario School of Medicine; Maar et al, 2013). The Northern Ontario School of Medicine is an example of a community engagement model. It was established with as social accountability mandate to be responsive to the needs of the people and communities of Northern Ontario. The school’s community engagement model is defined by the active participation of communities in shaping and delivering medical education. The school has engage First Nation communities in all its activities from curriculum development to the admission process, and it is working toward improve health outcomes for the indigenous people.

Th following is a video discussing patient and family centre care when it come to Aboriginal health

Cues to Action

The influence of cues to action for Aboriginal Canadian women to practice cervical cancer screening behaviours had been a goal for the Indigenous cancer care unit of Ontario Health (Cancer Care Ontario, [CCO]) collaborates with regional, provincial and national Indigenous and non-Indigenous partners and organizations to develop and implant Indigenous cancer strategies. Working together, the Indigenous Cancer Care Unit and Indigenous partners make sure proposed programs and strategies are relevant and have the potential to be highly effective at individual, family and community levels. The Joint Cancer Care Ontario Indigenous Cancer Committee provides input and guidance to CCO as it develops, implements and evaluates its Indigenous cancer strategies. These strategies aim to reduce the rising cancer burden among Ontario’s First Nations, Inuit, Metis and urban Indigenous populations. The committee includes members from the political territorial organizations and the provincial Indigenous organizations. These members of the committee include:

Through supporting equity is an important consideration to address barriers in accessing care, which includes access to culturally appropriate care. The geographic barriers experienced by many Aboriginal women are also experienced by under serviced rural and remote communities in Canada who according to the Canadian Cancer Registry, experience a higher incidence of cervical cancer than urban areas . The action plan will accelerate Canada’s efforts to strengthen the core components of cervical care preventions, screening and treatment with a significant focus on closing the gas in care and improving outcome for women with cervical cancer. Aboriginal women are more inclined to oblige recommended cervical cancer screening if there is more support provided for them and if more people from their culture are apart of the circle for cancer care prevention.

Perceived self efficacy

Perceived self efficacy is defined as the conviction that one can successfully execute the behaviour required to produce the outcome. Women who attained a frame of mind of living healthier and resolved to care for themselves holistically were more likely to become regular cervical cancer screening participants (Lee et al, 2020; Strecher & Rosenstock,1997). These women testified that changing their perspective on their overall health created a positive view point and facilitated participation. Family, especially children, was an underlying motivation for living healthier. The women desired to maintain a good health status with hopes of watching their children grow up. In addition to living a longer, healthy life, most of the women mentioned being a role model for their children. A common belief was that if they chose positive health behaviours, their children would follow their example. Being there for family and acting as a role model were priorities for many of the women and served as a facilitator in their CCS participation. Thus it is important for health care providers to emphasize prevention and educate women about high survival rates of cervical cancer in relation to regular screening behaviours. Moreover, a family entered approach regarding health promotion and prevention for interventions would be very beneficial (Black 2010; Dickinson et al 2012; & Maar et al 2013).

The use of Aboriginal knowledge is driven by ethical protocols including treating it with respect and care with the acute understanding that it is shared to benefit others. These protocols may overlap among tribal nations and may also be local. The history of health-related research with Aboriginal communities mirrors the troubled relationship between the federal government and the tribes. In both cases, the pattern has been analysis and diagnosis by external observes with minimal or no input of local perspectives followed by top-down, authoritative prescriptions dictating what the tribes should be doing. From the Aboriginal perspective, both among all communities of people researchers have committed a numbers of 'sins' as defined. Past researchers have disempowered communities, imposed stereotypes that reinforced internalized racism and conducted researcher that benefited the careers of individuals researchers, or even science at large, but brought no tangible benefit to the community struggling with significant health disparities. Many community tribals have provided accounts of researchers who have exploited tribes by coming in taking information and providing nothing in return. Decolonizing research is a process for conducting research with Aboriginal communities that places their voices in the middle. Holding Western beliefs and methods as the true science marginalized Aboriginal methods and ways of knowing by denigrating them as folklore or myths. There are five key message that will help facilitate reconciliation in research and for Aboriginal health beliefs be incorporated into ways of health and seeking care (Levac et al, 2018). These include:

1) "Reconciliation requires investments in First Nations/Inuit/Metis-specific knowledge

system. In may cases, reconciliation will also require learning from and across

Indigenous and Western knowledge systems without privileging Western knowledge, or

appropriating Indigenous knowledge;

2) Scholars have responded to the challenge of employing both Indigenous and Western

approaches to knowledge creation, by creating what we call "linking framework". It is

imperative for researchers and policy makers to leverage framework that reflect the

specific contexts and conceptual landscape in which they work;

3) Government commitments to move towards Nation-to-Nation relationships with

Indigenous peoples, and to undertake gender-based (intersectional) analysis in policy

decisions significantly building on one another;

4) Seven principles can be found at the bases of both intersectional analysis and the

Indigenous-Western knowledge linking frameworks: Relationality, Reciprocity,

Reflexivity, Respect, Reverence, Responsivity, and Responsibility; and

5) Doing intersectional research that learns across knowledge systems, challenges all

aspects of the research process" (Levac et al, 2018).

All five of the key messages have implications for a range of audience including policy makers across all levels of government, scholars, educators, research funders, community organization, and Aboriginal governments and organizations (Levac et al, 2018).

The document above provides a great illustration of the health behavioural model through dream catcher model. It outlines the transition of experiences of the negative impacts of cervical cancer screening participation to living healthier and apply heathy behaviours .

Conclusion

Health disparity for Aboriginal women is the result of centuries-old colonization practices and assimilation policies and is shaped by various determinants in the social and physical environment, including poverty, unemployment and low education and literacy rates. Many cancers are preventable or treatable in there early stages. Hence, primary and secondary prevention are vital to lower the rising burden of cancer. Interventions that target participatory acton research, national cancer surveillance data, knowledge translation, action plans, inter-sectoral policy development and community empowerment are needed to reduce the number of new cases of cervical cancer amongst Canadian Aboriginal and to reduce cancer-related mortality. To change health inequalities, researchers have recognized the need to build true partnerships with communities. Indigenous communities and researchers have voiced a variety of concerns with research as usual and emphasize the value of true partnership, including decolonizing research to instill a balance between Indigenous and Western frameworks and methods. Community-based interventions are required to achieve long-term and meaningful improvements across a wide range of health problems faced by Aboriginal communities. To reduce the rising burden of cervical cancer in present and future generations, the provision of community-centred care that is culturally appropriate is imperative.