Breast cancer is the most common cancer in North America (American Cancer Society [ACS], 2012; Canadian Cancer Society [CCS], 2012). Women diagnosed with breast cancer undergo a traumatic experience that disrupts their quality of life (Holmberg, Scott, Alexy, & Fife, 2001). In the psychological domain of quality of life, body image is disrupted due to the changes associated with breast cancer surgeries and treatments (Hormes et al., 2008). This is important because breast cancer survivors’ quality of life is an essential part of their survivorship (Kaiser, 2008). Evidence has suggested that physical activity shows improvements in body image, survival rates, and decreased risk of mortality (Schmitz, 2011). Furthermore, a unique form of physical activity associated with breast cancer that has risen among this population is endurance sporting events, such as dragon boating and running (Canadian Breast Cancer Foundation [CBCF], 2012; Parry, 2008). Endurance sporting events are common among breast cancer organizations to raise funds and spread breast cancer awareness (Kaiser, 2008). However, they also provide breast cancer survivors with a fun and healthy sporting environment to explore their body image as well as shared experiences with other breast cancer survivors. Researchers have shown endurance sporting events to be a comfortable environment for breast cancer survivors to allow their experiences to unfold (McDonough, Sabiston, & Crocker, 2008; Sabiston, McDonough, & Crocker, 2007). Due to the uniqueness of each woman’s breast cancer experience, it is important to explore their body image experiences to understand their personal stories and provide meaning to enhance their quality of life as breast cancer survivors. The general purpose of this dissertation is to explore the body image and camaraderie experiences of breast cancer survivors in endurance sporting events. Furthermore, the guiding research question of this dissertation is: What are the body image and camaraderie experiences of breast cancer survivors participating in endurance sporting events? Narrative research methodology will be used to provide insight into this research question across two studies. To address the gap in the literature, Study 1 of my dissertation provided narratives of three breast cancer survivors’ body image experiences as they trained for and participated in the CIBC Run for the Cure 5k. Two individual semi-structured interviews, prolonged engagement, and blogging were used as sources of data collection over a time period of 10 weeks. Data analyses led to the emergence of three themes: "new normal", goal setting, and camaraderie. Camaraderie, representing the shared breast cancer survivors’ experiences that allowed the women to focus on their physical capabilities, accept their bodies, and create an overall body image experience, was a particularly salient theme to the women throughout their training. Hence, the purpose of Study 2 was to explore the camaraderie narrative experiences of breast cancer survivors in a season of dragon boating. Focus group interviews and creative practices were conducted with a core group of 11 breast cancer survivors over a six month time period. The women defined camaraderie as fellowship, teamwork, and support shared between women with breast cancer experiences. Subsequent data analyses resulted in five themes: attention please, paddles up, take it away, hold the boat, and reach. Overall, camaraderie was shown to be crucial to the survivorship of the women, as social experiences are an important component to life after breast cancer. The findings were written as a collective (e.g., camaraderie) narrative. Taken together, these two studies demonstrated that body image and camaraderie are important components to breast cancer survivors’ participation in endurance sporting events. More specifically, both studies informed the literature by describing the relationship between the camaraderie and body image experiences for the women involved in both the CIBC Run for the Cure 5k and a season of dragon boating. Camaraderie was the motive that created an overall positive body image experience for the women. Furthermore, endurance sporting events associated with breast cancer formed natural, comfortable, and safe environments for the women to express their experiences. In addition, camaraderie seemed to be a key process through which the women were able to accept their bodies and the body-related changes that resulted from cancer. In both studies, breast cancer survivors’ participation in endurance sports included camaraderie experiences that led to fulfilling the physical, emotional, and social needs as a mode for the women to move beyond their breast cancer experiences.

The purpose of this study was threefold; to examine the unique challenges faced among young breast cancer survivors’ self-concepts; to explore the identity reformulation process as they adjust to a new lifestyle after completing medical treatment; and to identify women’s creative problem solving solution used to mitigate any long-term distress and discontinuity between past, current and ideal selves. In-person semi-structured interviews were conducted with 10 young breast cancer survivors (aged 32-45). The results indicated that exploring women’s narratives through the identity reformulation process created an alternative approach to the four prescribed quality of life domains used to understand survivors’ overall wellbeing. The results also identified three shared domains of social location (gender, youth and health status) that intersected in women’s identity reformulation process. These findings have implications for psychosocial oncology literature, as well as clinical practice for mental health practitioners. Limitations and recommendations for areas of future research were discussed.

Receiving a breast cancer (BC) diagnosis generates significant physical and psychological stress that may persist months, years, or even decades beyond treatment completion. Such chronic stress can severely alter the biological systems of BC survivors (BCS). Yet, little is known about the impact and associated variables of these long-term physiological sequelae. Considering that the number of BCS continues to grow each year, it is imperative to assess the extent to which a BC experience impacts human physiological mechanisms by examining the secretion patterns of associated stress- and immune-related biomarkers and by exploring the behavioural, physical, and psychological variables implicated in these dysregulations. Such research is of particular importance in order to guide cancer survivorship care and develop interventions promoting optimal health outcomes in BCS. This research program sought to address this through three inter-related studies. Study One was a quasi-experimental design study examining both the diurnal and reactive concentration patterns of secretory immunoglobulin A (SIgA) in a sample of women with (n = 22) and without a prior history of BC (n = 26). SIgA concentration patterns were contrasted to concentration patterns of cortisol and salivary alpha-amylase (sAA) in the same individuals (complementary to two previously published studies). Participants supplied saliva samples at five time points on two consecutive typical days (for diurnal data) and at seven time points before, during, and after an acute laboratory stressor (for reactive data). Results reveled no evidence of uncharacteristic SIgA diurnal or reactive concentration patterns, suggesting a normal and well-functioning immunological SIgA system in BCS on average 4.6 years post-diagnosis. Study One acted as a summary article allowing readers to grasp the "big picture" of long-term physiological dysregulations in BCS as a whole. Building on this, Study Two, which used the same dataset as Study One, aimed to determine whether physical activity (PA) could mitigate the adverse physiological effects of a BC experience in BCS (n = 25), as indexed by their cortisol concentration patterns. Participants self-reported their PA frequency and engaged in the same cortisol assay protocol reported in Study One. Results indicated no statistically significant differences in diurnal and reactive cortisol patterns between low- and high-PA groups. A trend that PA might not have the same effect on women with and without a history of BC was noted. Important limitations to Study Two included the small sample size and the lack of sensitivity and objectivity of the PA measure. To address Study Two’s limitations and to consider a wider range of modifiable variables that could contribute to the physiological dysregulations observed in BCS, Study Three aimed to assess the predictive value of six behavioural, physical, and psychological variables on the physiological effects of a BC experience, as indexed by cortisol (n = 192) and C-reactive protein (CRP; n = 168) levels over the first 1.5 year post-treatment. CRP, a biomarker that had not been considered so far in this research program, allowed to assess systemic inflammation in BCS post-treatment. Study Three also aimed to describe naturally occurring changes in cortisol and CRP levels and assess whether they changed in tandem. Data were drawn from 201 BCS who provided capillary blood and saliva samples at approximately 3.5 months post-treatment and again 3, 6, 9, and 12 months later. At each time point, participants also completed self-report questionnaires and wore an accelerometer for seven consecutive days. Multilevel modeling analyses revealed no significant change over time for cortisol levels post-treatment and a non-linear trajectory of change for CRP levels which was not predicted by cortisol levels. Associations between cortisol and sedentary time as well as associations between CRP and PA, body mass index, and health- and cancer-related stress were found. Collectively, these three inter-related studies uniquely add to the literature by describing long-term physiological trajectories of stress- and immune-related biomarkers in BCS. This research program attempts to gain a better understanding of the underlying mechanisms that tie behavioural, physical, and psychological variables and biomarker secretion to a BC experience. It also offers opportunities to identify women at greater risk of physiological dysregulations following a BC experience. This represents an important step towards the development of tailored interventions targeting specific BCS that most warrant them. With the number of BCS climbing each year, cancer survivorship needs to be a priority in research and efforts to better understand, monitor, and mitigate the physiological consequences of a BC experience are critical.

No description available.

Indiana University-Purdue University Indianapolis (IUPUI) / Up to 75% of the more than 3.5 million breast cancer survivors (BCS) living in the United States report cognitive dysfunction. However, little is known about cognitive dysfunction among older BCS, who may be at greater risk. Therefore, the purpose of this dissertation was to characterize cognitive dysfunction in older BCS. Specific aims included: (1) synthesize the literature regarding cognitive dysfunction in older BCS; and (2) examine the relationships between a) objective cognitive function (immediate memory, delayed memory, attention, executive function-working memory, verbal fluency) and subjective cognitive function (attention); b) demographic factors, medical factors, treatment factors, and cancer-related symptoms (depressive symptoms, anxiety, fatigue, sleep disturbance) and cognitive function; and c) comorbidity and cognitive function and physical functioning, and quality of life (QoL) in older BCS. In an integrative review, to address aim 1, 12 studies were identified. Up to 41% of older BCS showed objective cognitive dysfunction on neuropsychological assessment, up to 64% reported subjective cognitive dysfunction concerns pre-treatment, and 50% incurred cognitive decline from pre- to post-treatment. Cognitive dysfunction was associated with older age, multiple comorbidities, chemotherapy, sleep disturbance, neuropsychological symptom cluster, frailty, and poorer QoL. To address aim 2, data were leveraged from a large, nationwide, QoL in younger versus older BCS study (PI: Champion), which included 335 older BCS who were ≥60 years of age, had breast cancer (stage I-IIIa), received chemotherapy, and were 3-8 years post-diagnosis without recurrence. Findings included up to 19% of older BCS had mild-moderate objective cognitive dysfunction on at least one neuropsychological assessment, with 26% reporting poor-moderate subjective attention function. BCS, who were older, had less education and more depressive symptoms had greater cognitive dysfunction. Objective attention and executive function-working memory significantly and positively correlated with subjective attention. In turn, subjective cognitive dysfunction and increased number of comorbidities were related to poorer physical functioning. Subjective cognitive dysfunction was also related to poorer QoL. The findings from this study highlights the prevalence and complexity of cognitive dysfunction in older BCS. Further research is needed to better understand the intersection of aging, cancer, comorbidities and cognitive dysfunction and the negative implications in older BCS.

Indiana University-Purdue University Indianapolis (IUPUI) / The occurrence of colorectal cancer among those over the age of 50 is decreasing; conversely, the rate of diagnosis for those under 50 years old is increasing. While medical researchers scramble to identify the cause for this increase, young onset colorectal cancer (YOCC) patients and survivors are left to navigate a new normal. This new normal often includes awkward and troublesome concerns such as scarring, colostomy bags, and bowel problems. Contrary to those diagnosed with colorectal cancer later in life, those that are diagnosed at a younger age are forced to deal with these issues for many years. The purpose of this exploratory study was to identify privacy issues surrounding YOCC. Because of the significant increase in diagnoses, YOCC is now being researched independently from colorectal cancer in general. The topic of privacy has been researched in academic disciplines, including medicine. Privacy issues surrounding cancer have been researched, as well. Yet, the topic of privacy concerns facing YOCC patients/survivors has been overlooked. It is important to identify privacy concerns specific to YOCC patients/survivors as the information could help health care providers, communication scholars, and caregivers. Patient narratives were analyzed employing thematic analysis to identify privacy concerns of YOCC patients/survivors through the lens of Communication Privacy Management theory (CPM theory). Results indicated that participants discussed disclosure of their YOCC journey as a process. Within this disclosure process, YOCC patients/survivors identified specific privacy issues that influenced the way they disclosed or concealed information specific to their illness. There is a growing need for more research into the YOCC community due to the increase in diagnosis rates and their unique privacy concerns. Potential topics for future research include the impact of COVID-19, patient desire to help others, social media influence on disclosure, how patient disclosure could impact provider training, dating with YOCC, and specific demographic research.

Background: Breast cancer is the most common cancer in the world with approximately 1.7 million new cases diagnosed in 2012. While women with breast cancer are treated with a multitude of different therapies, these treatments can lead to long-term effects that impact quality of life (i.e. fatigue, pain, lymphedema, anxiety, depression, osteoporosis). With more people looking into complementary and alternative medicine (CAM), research on yoga’s effect on quality of life in breast cancer survivors is vital. Methods: This literature synthesis used PsychINFO, MEDLINE, and CINAHL explore current research on yoga’s effects on quality of life in breast cancer survivors. Search terms included: breast cancer, survivor, quality of life, lifestyle, wellbeing, clinical trial, and controlled trial. Literature was excluded if it included men, women under cancer treatment and if yoga was included in a mindfulness intervention. Results: Eleven articles met the inclusion criteria. Yoga was shown to have a positive impact on fatigue, pain, anxiety, depression, and breast cancer survivors’ quality of life. A majority of the studies measured quality of life using the FACT-B and FACT-G scale. Others used similar measurement tools and qualitative journal entries. Specific studies indicated improvements in aromatase-inhibitor associated arthralgia, diurnal salivary cortisol levels, and menopausal symptoms. Conclusions: Yoga appears to be beneficial in improving breast cancer survivor’s quality of life. More research is needed. However, nurses can use this information to educate clients about the benefit of yoga in survivorship. This research may promote further utilization of CAM in improving quality of life.

Background: Physical activity (PA) improves cancer-related symptoms (e.g., fatigue, sleep) in cancer survivors, although there is low adherence due to barriers. Cancer survivors are interested in participating in PA but healthcare providers feel they have inadequate knowledge in PA and lack guidance to provide PA support. Purpose: Examine PA advice for cancer survivors and healthcare providers from cancer survivor interviews to understand cancer survivors’ PA and create an algorithm to help healthcare providers assess and provide PA advice to cancer survivors. Method: Qualitative content analysis of twenty interviews with cancer survivors regarding PA. Results: Cancer survivors advised health care providers to make PA a standard assessment, educate patient on PA benefits, provide motivation and support, and help them with an exercise plan. Cancer survivors advised other cancer survivors to prioritize PA, stay positive and encouraged, and get social support. Discussion: An algorithm was created to assess PA and guide health care providers in promoting PA in cancer survivors.

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.

Background: Rectal cancer 5-year survival has increased from 58% of those diagnosed in 1987-1989 to 68% of those diagnosed in 2003-2009. Rectal cancer patients commonly receive one of two surgical treatments: permanent ostomy (a resection of tumor following by a stoma) or anastomosis (a resection followed by a reconnection with or without a prior temporary ostomy). The multifaceted consequences of both types of surgery potentially can affect both long-term psychological well-being and financial concerns of patients and their families. The overall goal of this dissertation is to increase the understanding of the impact of depression on the quality of life of rectal cancer survivors. Methods: The research data were based on a quality of life survey conducted in 2010-2011 among long-term survivors (≥ 5 years post-diagnosis) of rectal cancer. Participants were identified through the Kaiser Permanente (KP) health systems in Northern California and Southwest Washington/Oregon. Data included both the 2010/2011 survey data and KP electronic medical records (EMRs). Results: 1) The 24.7% prevalence of self-reported current depression among long-term rectal survivors was observed with a higher prevalence of 31% among those with permanent ostomies. Although average perceived financial burden level was low in this population of insured cancer survivors, 20% still reported moderate-to-high burden. Perceived financial burden was especially high among those who recalled having depression immediately after surgery and reported depression at the time of survey.2) All self-reported measures showed low sensitivity varying from 26% to 56% and high specificity from 77% to 82.7% against either diagnostic scheme from EMRs. Using either diagnostic scheme, the MCS-12 measure, a Mental Composite Summary (MCS) score from the 12-item Short-Form Health Survey with a cut-off point of≤45.6 for a self-reported depression, performed better as compared to the other two self-reported measures. 3) Approximately one in six rectal cancer survivors experienced depression after their surgery of sufficient severity to result in a depression diagnosis. Among survivors with recurrent depression diagnoses, those with a permanent ostomy reported significantly lower psychological well-being than those with an anastomosis. Conclusions: Depression burden is elevated after receiving surgery and remains a problem long after cancer diagnosis and treatment. Types of rectal cancer surgery received and gender of survivors may complicate the extent of depression burden. Among long-term rectal cancer survivors, having depression is associated with higher perceived financial burden. Chronic or recurrent course of depression may exist in this group of rectal cancer survivors and has significant impact on long-term psychological well-being. Self-reported measures for depression, such as MCS-12 measure with a cutoff point≤45.6, have the potential to be utilized for epidemiological studies when common screening instruments, electronic medical records, or administrative databases are not available. Implications: These findings underline the significance of depression assessments after surgery for this population of rectal cancer survivors and the importance of symptoms monitoring throughout the cancer survivorship continuum. Depressive symptoms should be monitored and managed as early as after cancer diagnosis and surgery to optimize survivors' long-term emotional well-being. In addition, depression screening and treatment as well as discussion of financial issues may have important roles in long-term survivorship care planning, particularly for those with permanent ostomies.