Sally Thorne

Evidence of health disparities among cancer survivors is growing. Globally, survivorship models of care are evolving rapidly, yet few consider health and social disparities in their development, limiting access to high quality survivorship care for many. In the current context, Canada’s survivorship care systems may privilege some, and not others, to receive high quality survivorship care and optimize health in this context. Understanding the role of disparities in models of care development and access is essential to ensure individual need, rather than social privilege, guides opportunities for high quality survivorship care. This study aims to improve survivorship care systems by helping clinicians and decision makers to a better understanding of how various factors (e.g. social, political, economic, personal) and survivors’ health experiences and health management strategies might shape the development of and access to high quality survivorship care for Canadians with cancer. A nursing disciplinary epistemology, underpinned by pragmatism and informed by critical and intersectional perspectives, served as a framework to explore complexity within survivorship care. A phased qualitative Interpretive Description approach was used to analyze data from three distinct data sources: 1) critical textual analysis of 70+ document sources (e.g., survivorship guidelines, education programs, policies, resources); 2) secondary analysis of multiple transcripts from 19 survivors in an existing data base; and 3) 34 survivor and 12 stakeholder interviews. Survivors described a gap between their expected and actual survivorship care experiences. This gap was shaped by contextual and structural factors that further marginalized some individuals/groups. Factors shaping this gap at all levels included: individual (e.g., previous experiences, social determinants of health, advanced cancer, age); group (e.g., defining standardized “norms”); and system (e.g. efficiency drivers, underdeveloped guidelines, exclusionary messaging such as “cancer can be beaten”). Recommendations arising from these findings ranged from strategies to build survivor trust to integrated policies across social and health sectors to promote survivors’ holistic health. This multilayered, intersectoral approach to understanding what shapes survivorship care systems and resources highlights and unravels the complex nature of the issue, helping clinicians and decisions makers find multi-layered approaches for equitably high quality survivorship care.

View record

Caring for adult haematology cancer patients can be challenging, and the difference in experience between this cancer subgroup and solid tumour cancers is only recently becoming a topic of investigation as researchers seek to identify and understand fundamental biological and psychological dissimilarities. The issue of identity is one that is of intense consequence for many cancer patients as they move from one state of being to another. This qualitative study was undertaken to generate knowledge about this important concern in a way that would ultimately inform an understanding of how to improve the patient experience of care with regards to identity concerns.Interpretive description served as the methodological framework which guided a data collection and analysis strategy composed of five consecutive layers. Secondary research included a critical integrative literature review, a historical inquiry, and a secondary analysis of a pre-existing qualitative database. Primary research was composed of semi-structured interviews undertaken with a haematology oncology patient cohort as well as semi-structured interviews with experienced oncology clinicians. Findings revealed that adult haematology oncology patients co-create and enact new identities that are increasingly aligned with a distinct experience defined specifically by their cancer subtype. Pre-existing identity labels and associated behaviours and expectations generally were viewed by patients as inadequate to fully describe and inform their experience of having a haematological cancer. Knowledge-gathering, linking with others who had similarly unique diagnoses down to a genetic level, and exploring the abstract cellular nature of their disease were just some of the themes that addressed ways these patients engaged with the highly complex and embodied construct known as identity. Several implications for clinical practice resulted from this study and include the importance of recognizing identity as simultaneously a physiological and psycho-social concern that will mean different things to different people at different times in the course of their disease. Implications for further research include advocating for theoretical and substantive knowledge development around identity constructs to generate further understanding of the deeply-rooted, textured relationship between identity and overall well-being.

View record

Individuals with Intellectual Disabilities receive breast, cervical, and colorectal cancer screening at rates lower than the general population. The reasons for this disparity are poorly understood. Additionally, in the general population, a primary care provider’s recommendation for cancer screening is one of the key determinants of whether an individual obtains cancer screening. This mixed methods study explored the role of primary care providers in recommending cancer screening to patients with Intellectual Disabilities. First, 106 primary care providers (family physicians, family medicine residents, and nurse practitioner students from across British Columbia) were surveyed regarding their attitudes towards people with Intellectual Disabilities in general, and their anticipated likelihood of recommending breast, cervical, and colorectal cancer screening to fictional patients with Intellectual Disabilities presented in vignettes. In the second phase, 10 family medicine residents and two family physicians were interviewed regarding their experiences recommending cancer screening to patients with Intellectual Disabilities. The quantitative and qualitative analysis revealed that: (1) participants with negative attitudes towards the community inclusion of individuals with Intellectual Disabilities were less likely to recommend breast and colorectal cancer screening to fictional patients with Intellectual Disabilities; and (2) participants balance applying evidence-based guidelines with exercising clinical judgement to determine the best course of care for each patient, and this balance is situated within the larger medical environment that physicians practice within. In conclusion, this study determined that aspects of attitudes are related to cancer screening recommendations, but given that attitudes are one of many factors related to screening recommendations, future studies should not solely focus on this factor. Second, it appears that clinicians individualize care for all patients, and a patient’s Intellectual Disability is one of many factors considered prior to a screening recommendation. Finally, participants were aware of the evolving nature of cancer screening guidelines, and changed their practice accordingly as guidelines change. More research is needed to determine if these findings are applicable to more experienced primary care providers, given that the majority of participants in the interview phase were residents.

View record