Background: Psychosocial loneliness is an unpleasant and distressing experience arising from subjective discrepancies between a person’s desired and actual social relationships. An increasingly common problem in UK society, loneliness is linked with serious adverse mental health outcomes and poses a significant risk to physical health, which several experts suggest is as great as smoking and obesity. In recent years leading cancer care organisations have raised awareness of the existence of loneliness and its potential importance in the context of cancer; however little attention has been paid in the literature or in clinical practice to understanding, identifying and alleviating loneliness. AimsThe project reported in this thesis aimed to: 1) clarify the conceptual and theoretical meaning of ‘loneliness’; 2) enhance understanding of loneliness in people living with and beyond cancer; and 3) develop an assessment tool for ‘cancer-related loneliness following treatment completion’. MethodsThe project began with a theoretical concept analysis of ‘loneliness’. This was followed by a systematic scoping review of loneliness and cancer. Gaps in the knowledge base were addressed by means of an exploratory mixed methods study. Phase 1 involved collection of quantitative data concerning loneliness from 107 individuals living with and beyond cancer. Descriptive and inferential statistical analysis of the data was conducted. Phase 2 involved the undertaking of semi-structured interviews with 12 individuals living with and beyond cancer who scored highly for loneliness in phase 1. Thematic Framework Analysis was employed to analyse the interview data. The findings of the qualitative phase, together with the initial conceptual work and the findings of the literature review were employed to develop the Cancer-related Loneliness Assessment Tool. Preliminary cognitive testing of this tool was conducted. FindingsLoneliness results from an interaction between personal and situational factors and is better viewed as an individual process rather than as a clinical condition for which specific diagnostic symptoms and cut-offs exist. The experience of loneliness appears to transcend the boundaries of cancer diagnosis, stage of disease, tumour site and treatment modality. The results of the quantitative phase indicated that participants in the study experienced, on average, ‘moderate’ levels of loneliness. In the study sample age was an independent predictor of cases of loneliness – the odds of individuals aged <30-59 being lonely were 23 times those of individuals aged 70+. Employment status was significantly associated with loneliness scores – non-employed individuals had higher loneliness scores than did employed individuals and retired individuals. The qualitative phase identified a contextual loneliness termed ‘cancer-related loneliness following treatment completion’. Such loneliness is a result of perceived social, emotional, cultural and healthcare-related relationship deficiencies stemming from or exacerbated by cancer-related sources. Loneliness emanating from deficiencies in relationships with healthcare professionals – termed healthcare-related loneliness – has not previously been referred to in the loneliness literature. The Cancer-related Loneliness Assessment Tool operationalised ‘cancer-related loneliness following treatment completion’ and preliminary cognitive testing indicated that the items generate the information intended and that individuals have little trouble completing the assessment tool. ConclusionsCancer-related loneliness following treatment completion should be addressed as part of comprehensive cancer care. Following further development, the Cancer-related Loneliness Assessment Tool could facilitate identification of loneliness in clinical practice. It could also aid with the development/adaptation and evaluation of interventions to address loneliness. Healthcare-related loneliness should be added to the existing tripartite (social, emotional and cultural) typology of loneliness, creating a quadripartite typology that encompasses all types of relationship deficits that can beget loneliness.

Emerging conversations within oncology have drawn more attention to cancer among young adults (ages 18-45). Recent research has illuminated many of the psychosocial difficulties young adults face as they go through the many trials and tribulations of chronic illness. However, a subject still understudied, much is unclear about the personal as well as the cultural implications of being diagnosed during this period of time. In a book of cancer stories, performer and young adult cancer patient Kairol Rosenthal (2009) expressed her frustration with what she saw as “stereotypes” promulgated by the limited public discourses that exist on the subject (p. 7). She sought to counterbalance these representations with stories capturing the “complexities of our real daily lives” (p. 7). Indeed, in oncological discourses young adults tend to be cast in oversimplified terms, based upon cultural expectations about what young adulthood should be and pressures to conform to those standards. Intersecting with dominant discourses within narrative identity development, two imperatives are placed upon young adults’ stories: integration of different life experiences and selves into a coherent narrative and developing a sense of self-authorship in the direction of one’s life. What seems to be lost in these imperatives within the existing research is what is at stake for individual lives (a phenomenological perspective) and how those stakes are negotiated or contested with hegemonic trajectories of life (a critical perspective). Receptive to Rosenthal’s critique of dominant discourses around cancer and young adulthood, the purpose of this thesis was to explore the complexity and diversity of young adults living with cancer. More specifically, I intended to interrogate some of their existential and biographical challenges as expressed in their narratives of cancer, as well as their engagements with ideological constructions of young adulthood, namely, the expectations of narrative coherence and self-authorship. This research marked a departure from most studies on the subject in its qualitative methodology (i.e., narrative analysis) and in its explicit evaluation of the effects of cultural discourses on young adults’ attempts to make meaning. More generally, this research shows the importance of language—in discourses, narratives, and metaphors—in constructing and communicating illness experiences. For this project, I gathered a mix of written and oral narratives (through semi-structured interviews) from 21 participants from across Canada. The foci of analyses were on what could be called narrative ‘moments of meaning’ and ‘moments of being,’ that is, situated expressions of how they made sense of their worlds and themselves. Many of these were critical moments in the sense of questioning and resisting dominant discourses of cancer and young adulthood. Their moments of meaning often expressed negotiation of personal desires and innovative intentions with familiar cultural narratives or “prototypical plots” (Good, 1994)—including stories of battling cancer, embarking on a life journey, nearing recovery, encountering unpredictability and mystery, and living with chaos. These moments of meaning served an array of purposes well beyond the expected function of constructing a coherent narrative. When telling of identity disruptions and the liminality of cancer, participants produced both more orderly moments of being (e.g., survivor, patient, or warrior identities) and more liminal moments of non-being (e.g., victim, phoenix, or trickster identities). Self-authorship seemed to be present among the former, while the latter expressed less control and certainty of being—which was not always seen as a problem. These moments of being and non-being were collaborated and contested within the intersubjective spaces of their clinical relationships, local worlds, and cancer patient communities. More specific to their age group, their moments of being and non-being often related to what may be understood as developmental identities, including the ‘traditional milestones’ such as individual autonomy, family (i.e., marriage and parenthood), and vocation (i.e., getting an education and building a career). In their struggles they sometimes reaffirmed these cultural ideals toward identity integration and other times resisted them as “normalizing ideologies” (Becker, 1997) of young adulthood. As part of these larger negotiations of meaning and being, the participants expressed struggles to understand the moral significance of their illnesses. Confronted with what may be called “causal ontologies” of suffering (Shweder, 1997), they spoke of different etiological models of cancer’s origins as well as reconciliatory models for living with cancer in the future. Their narratives sometimes led toward “remoralization” (Kleinman, 1988)—couching experiences of suffering in terms of a moral order (narrative coherence) and personal responsibility (self-authorship)—and sometimes led away from it, depending on whether they believed their illnesses originated from events in their personal and social lives. Overall, the participants in this study communicated complex and potentially chronic existential challenges. In many ways their narratives resisted dominant representations of young adults with cancer—and of cancer patients in general—suggesting that such representations need to be rethought. Their critical moments of meaning and being may serve as counternarratives to the stereotypes of concern to Rosenthal and many other cancer patients. Specifically, their narratives revealed the merits and limits of the ideological construction of young adulthood as a time of narrative coherence and self-authorship. This study has important implications for future health research and psychosocial support in the field of oncology; building upon a “narrative medicine” (Charon, 2006), sensitivity to how language is used among young adult cancer patients may lead toward more inclusive clinical practices.

No description available.

Childhood cancer is the leading cause of death by disease for children under 15 years of age. Despite a growing survival rate for childhood cancer, psychological research of this population has lagged behind medical advances in treatment. The research that does exist in the psycho-oncology literature is plagued with inconsistency in conclusions and methodological limitations. Focus has been given to measuring maladaptive symptoms with few firm conclusions. Conclusions in the area of social competence of children with cancer have been considerably more reliable than in other domains. Previous research suggests that children with cancer exhibit significant difficulties in the areas of social competence (peer relationships, social functioning) when compared with healthy peers. Although this phenomenon has been consistently demonstrated, it had not been investigated longitudinally or with a focus on pre- and postdiagnosis differences in functioning. This project investigated individual change in social competence in children with acute lymphoblastic leukemia (the most common form of childhood cancer) during their first 3 months of treatment compared to normally developing controls.

The concept of patient empowerment, although acknowledged by the medical community as important, is rarely understood and seldom given priority in the illness trajectory of the cancer patient. A pilot study of a Shared Care Model amongst haematological cancer patients highlighted the fact that some patients spoke of a sense of empowerment and an overall sense of greater control when more fully included in the treatment and management of their condition. The research which forms the basis of this thesis focused on the role of empowerment in the wellbeing of cancer patients. There were three objectives to be met by completing this research. Firstly, to demonstrate that empowerment is a uniquely identifiable concept and can be measured separately from other quality of life indicators. Secondly, the study sought to explore that concept that empowerment takes into account the way in which patients act upon their prognosis and optimise the outcomes of treatment. Thus it is believed that accessing tailored resources and support structures benefit cancer patients and those who are caring for them such as close family members and friends by helping the patient achieve an individual level of empowerment. Finally, the research sought to explore the concept that empowerment improves psychological outcome in patients. The benefits are increased empowerment and an active use of coping strategies amongst patients in order to regain a measure of control over their illness. The Patient Empowerment Scale was developed to measure empowerment as an individual construct. '...' The Patient Empowerment Scale (15 items) was shown to be a reliable measure of empowerment and fitted the model well. A qualitative methodological approach sought to address and explore the second and third concepts. In addition, the concept of empowerment as it relates to motivation and self-efficacy was investigated qualitatively using in-depth interviewing technique. A phenomenological methodology was used to explore the 'lived experience of cancer patients' in regard to regaining control of their illness and the management thereof. Participants were interviewed using concepts identified for the Patient Empowerment Scale such as support strategies and use of resources. A series of interviews with breast cancer patients were conducted whereby patients responded to a number of questions. The questions explored areas such as support mechanisms in relation to cancer, their relationships with health professionals and significant others and their attitude toward and use of other resources and support systems such as support groups, spirituality, complementary therapies. In addition their views on acceptance and adaptation to their altered health status were explored. Results The research confirmed that it is feasible to measure empowerment as a separate quality of life indicator. Furthermore, that empowerment is linked to motivation and self-efficacy beliefs. The research also demonstrated that there are a number of core areas which are fundamental to regaining control and increasing empowerment for patients. These core areas are linked to support mechanisms, willingness to adapt and to access resources tailored to meet their needs. Patient empowerment emerged as a key aspect of enhanced quality of life regardless of prognosis and improved psychological outlook.

Introduction: Cancer poses a substantial burden on the health of Canadians. Although advancements in screening and treatment have reduced, cancer-related morbidity and quality of life remain important concerns throughout cancer treatment and survivorship. <p>Purpose: This study examined the impact of Iyengar yoga on quality of life and other cancer-related symptoms among people with cancer. <p>Methods: All individuals registered for the Fall 2006 and Winter 2007, 10-week Iyengar yoga programs, offered by CancerCare Manitoba through private donations, were invited to participate in the study. Participants were asked to complete standard self-report questionnaires and participant diaries at baseline, week-5, week-10, and 6 weeks following the last class. The interventions impact on study outcomes were determined using repeated measures ANOVAs and paired samples t-tests. Six participant interviews and a review of participant diaries were conducted and analyzed using categorical aggregation and direct interpretation to identify other relevant issues as raised by participants and to document any negative effects of the program.<p>Results: Nineteen female participants completed the yoga intervention. The mean age of the sample was 50 years and the majority self-identified as Caucasian. Approximately one third had breast cancer and 63% were undergoing treatment for cancer at baseline. Results from the questionnaires showed statistically significant improvements in quality of life, mood disturbance, spiritual well-being, anxiety, nausea, pain, participants most bothersome symptom at baseline, and trait anxiety. Results from the interviews and participant diaries showed that participants experienced increases in social support, relaxation, mental concentration, and in flexibility, strength, and mobility in problem areas. Participants also expressed that their Iyengar yoga practice was empowering and supported their need to take an active role in their health and take a holistic approach to care. It was suggested that Iyengar yoga might contribute to the benefits reported through an ability to facilitate the development of coping skills or mindfulness.<p>Conclusions: The Iyengar yoga program for people living with cancer offered by CancerCare Manitoba can be considered a complex, multi-level, multi-modal intervention. Although, due to design limitations, neither causality nor a dose-response relationship between the Iyengar yoga intervention and the improvements in cancer-related outcomes could be inferred, the present study lends support to the assertion that Iyengar yoga is beneficial to the well-being of those living with cancer.

Introduction: Cancer poses a substantial burden on the health of Canadians. Although advancements in screening and treatment have reduced, cancer-related morbidity and quality of life remain important concerns throughout cancer treatment and survivorship. <p>Purpose: This study examined the impact of Iyengar yoga on quality of life and other cancer-related symptoms among people with cancer. <p>Methods: All individuals registered for the Fall 2006 and Winter 2007, 10-week Iyengar yoga programs, offered by CancerCare Manitoba through private donations, were invited to participate in the study. Participants were asked to complete standard self-report questionnaires and participant diaries at baseline, week-5, week-10, and 6 weeks following the last class. The interventions impact on study outcomes were determined using repeated measures ANOVAs and paired samples t-tests. Six participant interviews and a review of participant diaries were conducted and analyzed using categorical aggregation and direct interpretation to identify other relevant issues as raised by participants and to document any negative effects of the program.<p>Results: Nineteen female participants completed the yoga intervention. The mean age of the sample was 50 years and the majority self-identified as Caucasian. Approximately one third had breast cancer and 63% were undergoing treatment for cancer at baseline. Results from the questionnaires showed statistically significant improvements in quality of life, mood disturbance, spiritual well-being, anxiety, nausea, pain, participants most bothersome symptom at baseline, and trait anxiety. Results from the interviews and participant diaries showed that participants experienced increases in social support, relaxation, mental concentration, and in flexibility, strength, and mobility in problem areas. Participants also expressed that their Iyengar yoga practice was empowering and supported their need to take an active role in their health and take a holistic approach to care. It was suggested that Iyengar yoga might contribute to the benefits reported through an ability to facilitate the development of coping skills or mindfulness.<p>Conclusions: The Iyengar yoga program for people living with cancer offered by CancerCare Manitoba can be considered a complex, multi-level, multi-modal intervention. Although, due to design limitations, neither causality nor a dose-response relationship between the Iyengar yoga intervention and the improvements in cancer-related outcomes could be inferred, the present study lends support to the assertion that Iyengar yoga is beneficial to the well-being of those living with cancer.

Background: People with cancer are increasingly turning to the internet to find information and support. However, little is known regarding the use of the internet and how this impacts patients’ cancer experiences and their interactions with, and within, the healthcare system. Purpose and objectives: The overarching purpose of this dissertation is to explore the ways that patients newly diagnosed with cancer use cancer-related internet information (CRII) and the role it plays in interactions with the healthcare system. The specific objectives were to: (1) qualitatively explore the content of commonly searched websites from a critical nursing perspective; (2) explore patients’ prompts to use CRII and how CRII informs the ways in which patients interact with healthcare professionals and healthcare services, and (3) document what CRII is accessed and the patterns and frequency of use. Methods: An embedded mixed methods study was conducted using interpretive description as the overarching methodology. Date sources included: (1) a qualitative review of 20 cancer websites; (2) 19 individuals newly diagnosed with cancer, who each took part in two in-depth interviews and a brief survey; and (3) 21 healthcare professionals who engaged in three focus groups (n=17) and in-depth individual interviews (n=4). Results: The dominant discourse in the websites reviewed focused on empirical information about treatment, prognosis, and cure. A dearth of sociopolitical, ethical, personal, and esthetic information was noted. Thus, when seeking CRII, patients predominantly find empirical and biomedical information. The qualitative interviews with patients revealed three key themes that characterize how patients used CRII: (1) person in context, (2) management of information, and (3) managing relationships with healthcare professionals. These themes explain how patients mobilized CRII to manage their patient experience. Patients described CRII as an important resource to process information, make decisions about their illness, and make sense of their disease. Patients also sought CRII to complement and reinforce information and support provided by healthcare professionals. The interviews and focus groups with healthcare professionals revealed two key themes with respect to their views of CRII use. These themes relate to healthcare professionals’ perceptions of patient use of the internet to manage their pragmatic concerns and priorities as well as to navigate processes and practices of the healthcare system. Healthcare professionals found that CRII could modulate patients’ interactions with the healthcare system. Healthcare professionals also acknowledged key points in the cancer trajectory where information may be lacking or where patients may have less informational support; participants felt that CRII served as a beneficial resource to address these gaps. Although healthcare professionals were supportive of patient use of CRII to meet cancer information needs, they also described concerns regarding patients finding and using untrustworthy information. Conclusions: Together, the findings from this dissertation research inform an understanding of how people with cancer use CRII to manage their cancer experience and interact with healthcare professionals and services. Findings highlight the importance of information diversity in the midst of a lack of holistic and varied information presently online. There is also a need for nurses and other healthcare professionals to be aware of the information that is available online and to understand what patients are accessing. Communication about CRII between patients and healthcare professionals may also strengthen areas of patient education that are lacking as well as encourage healthcare professionals to raise key topics of interest. Implications for Practice: There is clearly a growing need for dialogue around pervasive technologies and the nursing role in assessing and directing patients to holistic information. Oncology nurses are well situated to take the lead in their multi-disciplinary care teams to engage patients about their CRII use and to explore the tensions experienced by clinicians surrounding CRII use. CRII use is a growing trend amongst patients across all healthcare settings, and nurses are well positioned to initiate discussions and be leaders in practice. Future research is warranted to expand on the link between CRII use and the utilization of health services, the role of CRII for those in rural areas compared to those in urban areas, and the role of the family in patients’ mobilization of CRII in their cancer experience.

Fear of cancer recurrence (FCR) is defined as “fear, worry, or concern relating to the possibility that cancer will come back or progress (Lebel et al., 2016, p. 3266). FCR is the most frequently reported concern identified among cancer survivors (Baker, Denniston, Smith, & West, 2005; Lebel, Rosberger, Edgar, & Devins, 2007). Although approximately 50% of cancer survivors experience moderate-to-high levels of FCR (Simard et al., 2013), few psychosocial interventions exist that directly target this construct. The overarching study objectives were: (a) to adapt a manualized, 6-week, cognitive-existential group therapy intervention for FCR to an individual format; (b) to pilot-test the feasibility, acceptability, and satisfaction of this individual intervention on n=3 participants; and (c) to further pilot-test the efficacy of the individual intervention on n=25 participants, via a randomized controlled trial (RCT). In study 1, n=3 cancer survivors (1 male, 2 females) completed the one-on-one therapy intervention for the psychological treatment of FCR. Sessions were 60-90 minutes long, and included cognitive restructuring exercises, behavioural experiments, relaxation techniques, existential processing of the here-and-now, and finding meaning in life post-diagnosis. Participants completed questionnaire packages throughout the intervention and an exit interview to determine their overall feedback on the intervention. Quantitative analyses revealed downwards trends in fear of cancer recurrence and cancer-specific distress across participants. Qualitative analyses of the exit interviews revealed that all participants found the intervention useful, and that the sessions had favourable pacing and length. In study 2, the FCR intervention was further pilot-tested via an RCT. Twenty-five female cancer survivors were randomized to an experimental group or a wait-list control group. Sessions included cognitive restructuring techniques, behavioural experiments, confronting existential distress, and relaxation exercises. Nineteen women (n=9 intervention, n=10 control) completed the 6-week therapy intervention, and completed questionnaire packages at pre-, post- and 3-month follow-up. Between-within ANOVAs revealed significant interactions in the primary outcome measure of FCR, and secondary outcome measures of cancer-specific distress and uncertainty in illness for participants in the experimental group. Repeated measures ANOVAs revealed reductions in FCR, cancer-specific distress, uncertainty in illness, reassurance-seeking, cognitive avoidance, and intolerance of uncertainty, and revealed improvements in positive reinterpretation and growth, use of emotional support and mental health (improved quality of life) for participants in the experimental group, as compared to the wait-list control group. The variables that changed either maintained or improved at follow-up. Results from this study demonstrate promising results in addressing FCR in cancer survivors via a cognitive-existential intervention. Future research should continue investigating the specific therapeutic ingredients that are most effective for the psychological treatment of FCR.

The Appalachian region is known for its beautiful mountains, close-knit communities, and health care disparities including higher rates of cancer and premature mortality. Being diagnosed with cancer in the region may present a unique experience for survivors in regards to family cancer communication and changing personal identities. In a multiphasic study, the stories of 29 female Appalachian cancer survivors were collected through either a day-long modified story circle event (n=26) or an in-depth interview (n=3). Qualitative content analysis was used to identify emergent themes in the data. The analysis revealed 5 types of family cancer communication and five barriers to family cancer communication. The analysis additionally revealed the identity struggle women experience between maintaining traditional Appalachian gender roles and surviving cancer. These findings suggest that female Appalachian cancer survivors appear to have additional challenges that may make the cancer experience in Appalachia unique.