Purpose: A diagnosis of cancer can be disabling in many ways. Most notably, cancer treatments are toxic and harmful to the body and threaten a person’s ability to care for themselves. In addition, cancer and its treatments can affect many dimensions of quality of life, including peoples’ abilities to engage in meaningful occupations. However, there are many gaps in the literature surrounding rehabilitation and the ways in which the psychosocial effects of cancer may be addressed by individuals. Empowerment is a concept used to articulate processes of rehabilitation that involves addressing both functional concerns as well as quality of life issues. Yet, empowerment remains a phenomenon not well understood. It is most often defined as a process and outcome of regaining a sense of control and autonomy that is lost due to an illness, but much of the empowerment literature in the context of cancer is written from the perspective of the health care provider. This perspective fails to recognize the processes through which survivors address functional and quality of life concerns leaving a gap in theory and evidence based practice in cancer rehabilitation. The purpose of this dissertation was to develop a grounded theory of empowerment to illuminate its associated processes from the perspective of cancer survivors to answer the following questions: 1) In what ways do cancer survivors define, describe and/or experience the processes of empowerment?; 2) How do cancer survivors describe the emergence of empowerment within various contexts and relationships related to their illness; 3) What are the connections and relationships between processes of empowerment and the commonly held assumptions about this phenomenon? Methods: Data collection consisted of 22 semi-structured interviews with cancer survivors (cancer of the head or neck and/or breast). Interviews explored participants’ illness experiences and views of empowerment. I used the social constructivist grounded theory method to analyze and map the processes of empowerment. Summary of Results: Empowerment reflects multiple complex processes. Broadly, empowerment occurred in two dynamic and paradoxical ways. First, empowerment was associated with establishing control over the treatment, management and impact of the illness on participants’ daily lives as a means to circumvent a sense of self that was eroding and changing. Secondly, empowerment was described as processes associated with relinquishing control over aspects of the illness deemed irrepressible and incorporating those aspects into a new identity. Conclusion: These two processes illustrate the paradox embedded within experiences of empowerment. The first process is comparable to current evidence-based practice in cancer rehabilitation that has a dominant focus on symptom control to reduce the impact of the illness on daily life. Gaps are more significant in relation to the empowerment processes associated with relinquishing control. These processes enabled survivors to acknowledge and accept the impact of illness as another way to address functional and quality of life concerns. Thus, my findings suggest that there is a need to design a variety of interventions that help cancer survivors live with and adapt to the effects of illness into daily living.

Current models of cancer care delivery in Canada are unsustainable due to the rapidly increasing number of cancer survivors at a time when there is a shortage of human and financial resources. With improvements in early detection, diagnosis, and treatment; patients diagnosed with cancer are living longer. There is also growing recognition of the chronic nature of cancer. Provincial cancer agencies have introduced new models of post-treatment follow-up involving early transition of cancer survivors back to their primary care providers. There is limited research evidence about the role nurses working in primary care settings play in the delivery of post-treatment follow-up and cancer survivorship care (CSC). The purpose of this study was to identify and examine, from the perspective of registered nurses, the strengths, barriers, and opportunities for optimizing nursing roles in the delivery of CSC in primary care. A qualitative descriptive study was conducted. Participants were recruited through membership lists from the College of Nurses of Ontario and the Canadian Family Practice Nurses Association Ontario and snowball sampling. Purposeful and maximum variation sampling techniques were employed. Participants completed an oral demographic questionnaire and individual semi-structured in-depth telephone interviews. Data collection and data analysis were conducted concurrently. The final study sample included 18 primary care registered nurses from 9 of 14 Local Health Integration Networks across Ontario. Overall, participants’ involvement in CSC was quite limited. Registered nurse involvement in CSC was categorized into three relevant themes: care coordination and system navigation; emotional support, and facilitating access to community resources. Barriers and facilitators to optimizing nursing involvement in CSC related to individual participant, practice setting, and primary care team factors. Participants recommended multiple strategies for expanding the role of nurses in CSC. / Thesis / Candidate in Philosophy / The current approach to cancer survivorship care (CSC) in Canada is unsustainable due to the rapidly increasing number of cancer survivors at a time when there is a shortage of human and financial resources. Patients diagnosed with cancer are living longer and there is growing recognition of the chronic nature of cancer survivorship. Provincial cancer agencies have introduced new models of post-treatment follow-up involving earlier transition of cancer survivors from specialist care back to their primary care providers. Currently, there is a gap in research evidence regarding the role nurses working in primary care settings play in the delivery of CSC. This thesis will describe the results of a qualitative descriptive study that identified and examined the strengths, gaps, barriers, and opportunities for optimizing nursing roles in the delivery of CSC within primary care settings from the perspective of registered nurses practicing in primary care.

Purpose: Many lives are affected by cancer. The number of people in England who have had a diagnosis of cancer exceeds one million. Previous research shows that one third of patients have unmet needs post-discharge from cancer treatment, including psychological issues such as negative impacts on self-identity and a lack of meaning in life. Studies have identified identity as an important factor in meaning making, but evidence regarding cancer’s impact on identity is limited to specific cancer sites and specific identity roles. Little is known about cancer’s general impact on global identity or how threats to identity relate to meaning making. The aim of this study was to understand patients’ experiences of cancer’s impact on their identity and what sense they made of these experiences. Methods: Twelve participants in the post-treatment phase of cancer shared their experiences in individual semi-structured interviews. Key themes regarding identity and meaning making in the post-treatment phase were identified using interpretative phenomenological analysis (IPA). Results and Conclusions: Four key themes in the participants’ experiences were identified. These were 1) disrupted identity roles, 2) highlights what is important, 3) focused on priorities, and 4) reducing awareness of loss and uncertainty. Relevant literature and implications for future research and clinical practice are discussed.

No description available.

Background: Since the early 1960s, survival rates among cancer survivors have been increasing. Surviving cancer can be a stressful experience due to the multifaceted changes that come with diagnosis, treatment, and recovery. Therefore, studying the mental health of cancer survivors is vital for their well-being. Among queer groups (including those identifying as gay, lesbian, or bisexual), poor mental health is more prevalent than among heterosexuals. However, cancer survivorship among queer populations is not well studied. This study examines the association between cancer survivorship and poor mental health, focusing on potential sexual orientation differences. Methods: Data are from the 2019-2021 National Health Interview Survey. Participants identified as straight (n=65,006), gay or lesbian (n=1,271), or bisexual (n=1,100). Diagnosis of anxiety and depression as well as the frequency of anxiety and depressive symptoms were regressed on cancer survivorship (assessed based on cancer diagnosis) using logistic models. Using a subsample of 2019 rotating core participants, we assessed anxiety, using the Generalized Anxiety Disorder-7 (GAD-7) scale, and depression, using the Patient Health Questionnaire-8 (PHQ-8) symptoms, to account for a potential lack of diagnosis. Models were adjusted for sociodemographic covariates and were stratified by sex. Results: After adjusting for sociodemographic characteristics there was no significant association between cancer diagnosis and mental health in the overall sample. However, when examining sexual identity-specific estimates, among bisexual males, cancer survivors had higher odds of “daily” anxiety [OR=8.07 CI (1.23,52.81)] and “weekly or monthly” depressive symptoms [OR=15.23 CI (3.17, 73.22)]. While among bisexual females, cancer survivors had significantly higher odds of anxiety diagnosis [OR=3.03 CI (1.37, 6.71)] than those who never had cancer. Moreover, bisexual male cancer survivors had higher GAD-7 [β =10.39 (4.03, 16.75)] and PHQ-8 [β =13.59 (6.03, 21.16)] scores than those who never had cancer. No other significant associations were found for other sexual identity groups. Our test for effect modification based on sexual identity on the association between cancer diagnosis and mental health outcomes suggested that the association between cancer diagnosis and mental health outcomes were similar across sexual identity groups. The p-values ranged from 0.11 to 0.92. Conclusion: Bisexual cancer survivors may experience poorer mental health than those who have not had cancer, suggesting a potential need for more targeted mental health intervention and cancer survivorship support. However, small sample sizes suggest that additional work with larger samples of cancer survivors is needed to corroborate these findings.

Over 1 million Americans are diagnosed with cancer in a given year and currently there are approximately 12 million cancer survivors in the United States. With improved detection strategies and medical advances, the number of cancer survivors continues to rise, making survivorship care an increasingly important phase along the continuum of cancer care. The purpose of the current study was to investigate the emerging field of survivorship care, including care planning and follow-up, in survivors of different types of cancer. We quantitatively evaluated the post-treatment care received by 123 cancer survivors, including the use of survivorship care plans and the impact of these care plans and subsequent follow-up on a variety of behavioral health outcomes. We qualitatively assessed survivorship care providers' (n = 8) perspectives on comprehensive survivorship care and experiences delivering post-treatment services. The majority of participants (54%) are receiving a moderate level of survivorship care, including minimal receipt of a written care plan (31%) and some amount of referrals for mental health, diet, and physical activity (28%). Results suggest significantly lower general psychological distress (F [1, 104] = 8.316, p = .005) and higher coping self-efficacy (F [1, 104] = 6.627, p = .011) for those who received some form of written care plan versus those who did not. These results imply that written care plan documents have the potential to lead to higher psychosocial functioning for survivors of cancer. The qualitative data provide initial evidence supporting the value of SCPs for patients and providers. Critical barriers to implementation of comprehensive survivorship care and SCPs, from the providers' perspective, include the fragmented healthcare system and resources. The current study is an important step toward increasing knowledge of and potential intervention targets to improve cancer survivorship experiences – from both the patients' and providers' perspectives. Future directions include developing a standardized system for delivering survivorship care and SCPs, and increasing the evidence base to examine the impact of SCPs on short- and long-term patient-reported and clinical outcomes, increase the focus on patient-centered care, and explore the impact of SCPs delivered to vulnerable groups of survivors. / Ph. D.

In this dissertation I engage in life writing and literary métissage (Chambers, Hasebe-Ludt, Leggo, & Sinner, 2012; Hasebe-Ludt, Chambers, & Leggo, 2009) to explore and exemplify mindful, aesthetic, and compassionate practices for working through moments of crisis (Kumashiro, 2010) in teaching and learning. The dissertation is designed as a four-strand braid and organized around the active verb “practising” to dig deep into the dynamic, and often difficult, processes of teaching and learning: (1) Practising Vulnerability; (2) Practising Discomfort; (3) Practising Mindfulness; and (4) Practising Compassion. Each strand is composed of different genres of life writing: theoretical and analytical introductions, letter writing, journal pieces, comics, photos, poetry, creative non-fiction, collages, scenes from a play, and an alphabet book. The multimodal life writing pieces are worked examples (Gee, 2010) of contemplative practices and pedagogical praxis. Life writing offers concrete ways to practise mindfulness, reflection, and reflexivity, which, in turn, invite a more awakened, critical, and compassionate stance as an educator. If teachers want to move beyond simply promoting the importance of reflective practice, wellbeing, self-actualization, and compassion to their students then we need to show more teachers (and teacher educators) the messy process of doing so themselves. Reading life writing is a starting point for teachers at all stages in their careers to imagine how they could, or already do, engage in similar processes and invite them to cultivate compassion and self-compassion as a grounding stance for their life projects as teachers, learners, and human beings. My autoethnographic teacher inquiry (Cochran-Smith & Lytle, 2009) was prompted when I encountered “troubling” (Kumashiro, 2009) tensions when first teaching about homophobia and transphobia to teacher education students at a faculty of education on the Canadian prairies. I began to explore the vulnerability and discomfort of this teaching moment from an experimental (Davies, 2011), multimodal (Kress & Street, 2006; Pahl & Roswell, 2006), critical literacy stance (Janks, 2010; Vasquez, Tate, & Harste, 2013). My inquiry shifted after a diagnosis of breast cancer, which became an opportunity for me to awaken to more mindful, empathetic, and compassionate ways of being, living, teaching, and researching. / February 2017

Radiotherapy has been shown to increase the subsequent risk of heart disease among survivors of breast cancer, but little is known about factors, other than the dose of radiation delivered to the heart, which determine the magnitude of the risk. In addition, survivors of teenage and young adult cancer are internationally acknowledged as an understudied population, and limited information is available on their late health risks. This thesis sought to utilise the largest observational datasets available to date for these populations: the Collaborative Group on Observational Studies of Breast Cancer Survivors and the Teenage and Young Adult Cancer Survivor Study. These were used to firstly characterise the radiation-related risks of heart disease and lung cancer, and secondly to provide an overview of the long-term risk of heart disease for the entire spectrum of cancers diagnosed in teenagers and young adults aged 15 to 39. Initially, a methodology study and systematic review demonstrated that selection effects and other biases can be very problematic during analyses of observational cohorts, particularly when using a radiotherapy comparison. However, in the case of heart disease and lung cancer, one can take advantage of the breast being a paired organ and use a laterality comparison, particularly when laterality played little effect in treatment selection. This comparison was used throughout the analyses of breast cancer patients. This thesis demonstrated that adjuvant radiotherapy for breast cancer significantly increased the risk of heart disease among women with left-sided breast cancer and those patients with ipsilateral lung cancer. Interestingly, younger women were at the highest risk of heart disease, and a progressive proportional decrease in risk with increasing age at diagnosis was found, which has not been shown before. It also suggested that radiotherapy and chemotherapy combined may further increase the risk of heart disease among breast cancer patients. Survivors of teenage and young adult cancer, particularly Hodgkin lymphoma, were at a significantly raised cardiac mortality risk compared to the matched general population. The findings of this thesis provide evidence to support continued follow-up for cancer patients, as survivors were found to be at a substantial risk into the second or third decade after treatment. It has permitted the detection of groups of individuals at particularly increased risks, for example younger patients and survivors of Hodgkin lymphoma diagnosed in teenagers and young adults, for whom closer monitoring for late effects or measures to reduce the risk, such as adaptations to treatment, may be appropriate. Finally, evidence was also presented to support the development of clinical follow-up guidelines specifically for survivors of teenage and young adult cancer.

Background: Behavioral interventions and evidence based guidelines along the cancer control continuum can reduce the burden of cancer. Objectives: This dissertation aims to increase our understanding of colorectal cancer screening (CRCS) decisional conflict and breast cancer survivorship care. This project: 1) assesses CRCS decisional conflict in a general population, 2) uses the Theory of Triadic Influence to model and evaluate direct and indirect associations between CRCS decisional conflict and colonoscopy adherence, 3) assesses post-treatment breast cancer care. Methods: Data from a questionnaire administered to randomly selected adults, 50-75 years, living in six MN communities (N=1,268) and the 2010 Behavioral Risk Factor Surveillance System (BRFSS) (N=1,024, women ages 27-99) were used. Multivariable logistic regression was used to identify characteristics associated with high CRCS decisional conflict; then structural equation modelling (SEM) was performed to assess direct and indirect associations of CRCS decisional conflict and colonoscopy adherence. Using BRFSS data, multivariable logistic regression was performed to assess the association between years since diagnosis and the type of clinician providing the majority of care for breast cancer survivors after treatment completion. Results: Greater colonoscopy barriers (OR=1.04; 95% CI: 1.02-1.05) and CRCS-specific confusion (OR=1.12; 95% CI: 1.10-1.15) as well as a healthcare provider not discussing CRCS options (OR=1.67; 95% CI: 1.18-2.37) were associated with increased odds of high CRCS decisional conflict. A similar relationship was found in the SEM analyses: both greater levels of perceived colonoscopy barriers and CRCS confusion were associated with higher decisional conflict (standardized total effects=0.42 and 0.39, respectively, p-values < 0.01). CRCS decisional conflict was associated with increased non-adherence to colonoscopy. This relationship was mediated by CRCS-specific self-efficacy and intention (standardized total effect=0.14, p-value <0.01). Among breast cancer survivors, women 0–1 and 2–3 years since diagnosis were 2.1-2.6 times more likely to have a cancer-related clinician providing the majority of care compared to women 6+ years since diagnosis (95% CIs: 1.0-4.3; 1.4-4.6). Conclusions: Decreasing colonoscopy barriers and CRCS-specific confusion could decrease CRCS decisional conflict and ultimately increase CRCS uptake. National policies to move breast cancer follow-up care to a primary care provider might be well-received by cancer survivors.

Social support plays a crucial role in both the physical and mental adjustment to the diagnosis of breast cancer and its treatment. However, the mediating effects of social support are embedded within the larger, social and cultural contexts in which support given and received. Due to language, culture and economic issues, immigrants may find themselves without the social support and networks that had previously enabled them to cope with illness and disease. This research grounds our understanding of social support and breast cancer within that larger context that includes the social environment and the experience of health disparities. Ethnographic methods were used to explore the cultural domains of social support and to examine cultural and structural factors that influence this multifaceted construct. Participant observation, key informant interviews and 28 in-depth interviews with Latina immigrants diagnosed with breast cancer were conducted in Phase I. The qualitative data gathered in Phase 1 informed the development of the structured questionnaire that was administered in Phase II to 60 Latina immigrants in West Central Florida who had been diagnosed with breast cancer. Breast cancer not only affects individuals, it impacts their social relationships, finances, work, and social roles. The analysis provides a rich and in-depth understanding of social support and contextualizes the breast cancer experience of Latina immigrants. Results suggest that cultural expectations about gender roles shape what kinds of support and assistance is provided by men and women. Spirituality and prayer were identified as non verbal sources of support. Beliefs about not burdening the family with personal concerns and beliefs that family needs should come before one's own were negatively associated with social support. English proficiency and length of time in the United States were not associated with social support. Regardless of length of time in the US there appears to be strong ties with family in their native country. While family both in the US and in their native country were identified as sources of support, they were also identified as a source of stress. Recommendations for clinicians, practitioners and community-based organizations that provide supportive services and programs to Latinos are included.