The current patient-centred healthcare approach encourages individuals to assume greater roles in decisions about their health. The premise is that patients who are well informed about healthcare options are more likely to adhere to prescribed treatments and achieve better health outcomes. This approach assumes that patients have an adequate level of health literacy. While a range of definitions exist, health literacy is commonly defined as an individual’s ability to seek, understand and utilise health information to make appropriate health decisions. / Health literacy is increasingly recognised as a complex multi-dimensional concept which involves interactions between individual abilities and broader environmental factors. However across definitions, there has been little consultation with patients to understand what is important to effectively seek, understand and utilise health information. The lack of a consensual understanding has led to debate as to what health literacy represents and how it should be measured. A range of measures exist with the predominant approach being the testing of individual literacy abilities. However measures do not assess the range of attributes described in definitions. Thus a considerable gap exists between how health literacy is defined and how it is measured. This thesis focused on addressing this gap. The objectives were to: (i) critically appraise existing health literacy measures (ii) develop a conceptual framework from the patient perspective and (iii) use this framework to develop a comprehensive measure of health literacy. / A multi-method qualitative and quantitative approach was used: / (1) Systematic review and appraisal of the content, development and psychometric properties of health literacy measures. / (2) In-depth consultations with patients across healthcare and disease continuums to develop a conceptual framework. / (3) Development of a new health literacy measure based on the conceptual framework using a classical test theory approach. / A critical appraisal of the literature revealed that the majority of health literacy measures are not based on a conceptual framework and none appeared to adequately measure a person’s ability to seek, understand and utilise health information. Content focussed primarily on reading, comprehension and numeracy skills and scoring was poorly defined. Only five of the 19 measures had evidence of acceptable reliability. / The conceptual framework of health literacy from the patient perspective identified 17 key elements: six individual abilities and 11 broader contextual factors that are important to seek, understand and utilise health information and expanded previous conceptualisations of health literacy. This informed the development of the Health Literacy Management Scale (HeLMS) which measures six generic and potentially modifiable abilities and three specific broader social factors. Overall the HeLMS measures an individual’s ability to seek, understand and utilise health information within the healthcare setting. The HeLMS consists of 29 items across eight domains. Rigorous psychometric testing demonstrates that it possesses strong construct validity and high reliability (coefficient α >0.80 for all eight domains). / This research provides unique contributions to the conceptualisation and measurement of health literacy. Limitations in the content and psychometric properties of previously developed measures have been identified through a systematic process. A conceptual framework derived from the patient perspective identifies a range of components that provide new insight into: (i) constructs that should be incorporated to measure health literacy and (ii) areas that need to be addressed to improve health literacy. The development of the HeLMS now allows for a more comprehensive assessment of health literacy. Information from the conceptual framework and the HeLMS are likely to be useful tools to inform the development of public health initiatives to enhance patient participation in the management of their health.

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.

Discrete choice experiments (DCEs) are a stated preference valuation method. As a ubiquitous component of healthcare delivery, risk is increasingly used as an attribute in DCEs. Risk is a complex concept that is open to misinterpretation; potentially undermining the robustness of DCEs as a valuation method. This thesis employed quantitative, qualitative and eye-tracking methods to understand if and how risk communication formats affected individuals’ choices when completing a DCE and the valuations derived. This thesis used a case study focussing on the elicitation of women’s preferences for a national breast screening programme. Breast screening was chosen because of its relevance to primary care and potential contribution to the ongoing debate about the benefits and harms of mammograms. A DCE containing three attributes (probability of detecting a cancer; risk of unnecessary follow-up; and cost of screening) was designed. Women were randomised to one of two risk communication formats: i) percentages only; or ii) icon arrays and percentages (identified from a structured review of risk communication literature in health).Traditional quantitative analysis of the discrete choices made by 1,000 women recruited via an internet panel revealed the risk communication format made no difference in terms of either preferences or the consistency of choices. However, latent class analysis indicated that women’s preferences for breast screening were highly heterogeneous; with some women acquiring large non-health benefits from screening, regardless of the risks, and others expressing complete intolerance for unnecessary follow-ups, regardless of the benefits. The think-aloud method, identified as a potential method from a systematic review of qualitative research alongside DCEs, was used to reveal more about DCE respondents’ decision-making. Nineteen face-to-face cognitive interviews identified that respondents felt more engaged with the task when risk was presented with an additional icon array. Eye-tracking methods were used to understand respondents’ choice making behaviour and attention to attributes. The method was successfully used alongside a DCE and provided valid data. The results of the eye-tracking study found attributes were visually attended to by respondents most of the time. For researchers seeking to use DCEs for eliciting individuals’ preferences for benefit-risk trade-offs, respondents were more receptive to risk communicated via an icon array suggesting this format is preferable. Policy-makers should acknowledge preference heterogeneity, and its drivers, in their appraisal of the benefits of breast screening programmes. Future research is required to test alternative risk communication formats and explore the robustness of eye-tracking and qualitative research methods alongside DCEs.

No description available.

Under-acknowledged both clinically and socially as a threat to men’s health, breast cancer in men continues to be a critical health issue, with complex ramifications for those affected. Research exploring men’s breast cancer experiences and their lives beyond the diagnosis remain limited. Hence, this inquiry asks ‘How do men describe breast cancer and their experiences of the illness?’ the aim, to advance understandings about men’s meaning-making of breast cancer and masculinity, and to ‘give voice’ to this under-researched population. Embedded theoretically and methodologically within a critical qualitative health framework, the research has two parts. Part one is a qualitative synthesis of nine existing international studies exploring men’s breast cancer experiences, following Noblit and Hare’s (1988) method for synthesising interpretive qualitative data. The outcomes of this synthesis were used to inform part two: a multi-method phenomenological exploration of men’s breast cancer accounts using verbal and visual data. Thirty-One British men recruited through NHS records, Breast Cancer Care, and social media platforms, used self-authored photographs to illustrate their breast cancer experiences, which they later discussed as part of extended semi-structured interviews. All data were analysed together using Interpretative Phenomenological Analysis (Smith & Osborn, 2003). Integrating and triangulating the findings from the two study phases, the on-going marginalisation of men across the breast cancer trajectory, and how this influences men’s experiences of, and adjustment to the illness, are revealed. Findings from the qualitative synthesis suggest current approaches to breast cancer care and advocacy serve to isolate men, potentially alienating and emasculating them; while patient management practices and informational resources unequivocally marginalise men. Findings from the new inquiry corroborate those from earlier studies, further illuminating the difficulties men encounter and some of their coping strategies. Specifically, three superordinate masculinities were identified: ‘threatened and exposed’, ‘protected and asserted’, and ‘reconsidered and reconfigured’. A schematic representation is presented to show how these interconnected masculinities are encountered, performed and utilised by men from pre-diagnosis through treatment and beyond as they manage, make sense of, and live through breast cancer. How and why men encounter/perform these different masculinities at different points in time across the breast cancer trajectory, and how this aids men’s adjustment to illness, and life beyond the diagnosis, is considered. The findings are expected to have both academic and real-world impact through informing future research, and recommendations for advocacy and intervention for improved future breast cancer care and practices.

This thesis focuses on the experiences of Vietnamese immigrants and refugees in accessing health care services in Saskatoon. Within Canada, terms such as immigrant and refugee are assigned to reflect the differing circumstances that “newcomers,” i.e. foreign-born residents, arrive under, who are typically classified as either temporary or permanent residents (Gushulak et al. 2011). Research has suggested that newcomers to Canada from non-European countries tend to under-utilize health services (Curtis and MacMinn 2008; Luu, Leung and Nash 2009; O’Mahony and Donnelly 2007; Whitley, Kirmayer and Groleau 2006), while language and cultural differences are cited as barriers to health care (Asanin and Wilson 2008; Gushulak et al. 2011; Kirmayer et al. 1996). Qualitative health research regarding Vietnamese immigrants and refugees in Saskatchewan is currently lacking. The purpose of this study was to elicit a deeper understanding of experiences in accessing health care services through open-ended interviews. A total of 14 interviews were conducted regarding the health care experiences of members of the Vietnamese community in Saskatoon. The aim was to examine the possible socio-cultural determinants affecting the experiences of this study’s participants, to explore whether or not these determinants resulted in health care under-utilization, and to determine areas for future research, particularly, in working to resolve barriers to care for immigrant and refugee groups. Participants iterated the challenges that newcomers face in accessing health care, such as language, cultural, geographical, and socio-economic differences, as identified within the literature. However, the most elaborate responses given by the Vietnamese-born participants in this study were built around references to Vietnam (their country of origin). In particular, they described their experiences in Saskatoon through comparisons of health care and larger socio-economic circumstances in Vietnam. While participants described both positive and negative experiences, the consensus was that health care is generally better in Canada than in Vietnam. This thesis illustrates the value of examining the participants’ descriptions of Vietnam in understanding their experiences with health care in Saskatoon. These findings contribute to a contextual understanding of the socio-cultural determinants affecting the experiences of immigrants and refugees. I follow previous research studies to suggest that the cross-cultural contexts of health and illness need to be continually explored in health research regarding immigrants and refugees.

Thesis advisor: Jane Flanagan / Background: Over the past decade, increasing numbers of emerging adults, defined as ages 18 to 22, have journeyed to the United States (US) from Guatemala, Honduras and El Salvador. Upon arrival to the US, many experience inequities in health and healthcare access. The inequities are shaped by US political practices and choices attributed to broad structural and systemic-level barriers within planetary, social, economic and necropolitical forces. Applying a critical framework of antiracism, anti-oppression and anticolonialism, nurses and other healthcare providers must seek to understand the health patterning and life experiences of emerging adult im/migrants from Guatemala, Honduras, and El Salvador so that their health and healthcare needs may be supported. Approach: This qualitative research project aimed to explore health patterning of emerging adult immigrants from Guatemala, Honduras, and El Salvador using the nursing specific research praxis of Health as Expanding Consciousness (HEC). The second aim explored themes across the group. Critical posthuman, feminist, and new materialist assumptions also informed the approach to the study. Between June 2021 to November 2022 thirteen emerging adult participants from Guatemala and Honduras were interviewed twice. Enrollment occurred through community-based recruitment and snowball sampling methods. Each person’s individual story was explored using the HEC praxis method. Results: Participants’ stories uncovered unique profiles with situated, context-specific individual health patterning. Four themes were identified across stories using the qualitative analytic method of Sort and Sift, Think and Shift: Family is Fundamental, The Journey Holds Meaning, Opportunities Exist Amidst Constraints, and Movement and Art are Healing. Conclusions: The discussion section reviews main implications for building critical nursing praxis; understanding intersections of health, nursing care and human mobility; advancing nursing policy for people excluded from care; advancing research using HEC praxis as a caring act of accompaniment; and transforming nursing education for social justice and radical possibility. Im/migration and asylum-seeking were viewed as fundamental human rights including critically advancing the right to health and safety for people in mobility contexts. / Thesis (PhD) — Boston College, 2022. / Submitted to: Boston College. Connell School of Nursing. / Discipline: Nursing.

At the Ottawa Hospital in Ontario, Canada, clinicians use full body immersion virtual reality to treat a variety of health conditions, including: traumatic brain injuries, post- traumatic stress disorder, acquired brain injuries, complex regional pain syndrome, spinal cord injuries, Guillain-Barré syndrome, and lower limb amputations. The system is shared between military and civilian patient populations. Viewed by clinicians and the system’s designers as a value neutral medical technology, clinical virtual reality’s sights, sounds, movements, and smells reveal cultural assumptions about universal patient experiences. In this dissertation I draw from reflexive feminist research methodologies, visual anthropology and sensory ethnography in a hospital to centre the body in current debates about digital accessibility in the 21st Century. 40 in-depth interviews with practitioners and patients, 210 clinical observations, and film and photography ground research participant experiences in day-to-day understandings of virtual reality at the hospital. In this dissertation I address an ongoing absence of the body as a site of analytical attention in anthropological studies of virtual reality. While much literature in the social sciences situates virtual reality as a ‘post-human’ technology, I argue that virtual reality treatments are always experienced, resisted and interpreted through diverse body schemata. Furthermore, virtual reality cannot be decoupled from the sensitivities, socialities and politics of particular bodies in particular places and times. The Ottawa Hospital’s Computer Assisted Rehabilitation Environment (CAREN) system features a digitally enhanced walk-in chamber, treadmills on hydraulic pistons, surround sound audio, advanced graphics and user feedback utilizing force plates and a dynamic infrared motion capture system. The CAREN system utilizes hardware and software reliant on specific assumptions about human bodies. For example, these assumptions are echoed in depictions of race, gender, class, and indigeneity. Patients using virtual reality technologies can experience more than one disability or health condition at a time, further disrupting the idea of universal user experiences. As clinicians and patients confront the limitations of body normativity in the CAREN system’s interface design, they improvise, resist, and experience virtual reality in ways that defy design agendas, ultimately shaping patient treatments and unique paths to healing and health. / Graduate