Navigating the Empty Spaces of Care: A Feminist Political Economy Analysis of the Care Experiences and Work Practices of Women Living with Cancer

Advances in cancer treatment are improving survival rates and, in so doing, transforming the nature of cancer from an acute to chronic illness. Within the Canadian health care system, there has been increasing policy acknowledgment of and support for a culture change in care that promotes a stronger chronic care agenda and yet the Canadian health care system continues to operate within a predominantly medical model that favours acute care and treatment. The Princess Margaret Cancer Centre has shown some evidence of their commitment to a chronic care model through the implementation of ELLICSR Health, Wellness and Cancer Survivorship Centre. While this appears promising, understanding how these changes are operationalized in a predominantly acute health care setting remains an underdeveloped area and the implications for patients remain unknown. In this study, I apply critical ethnography and various data collection methods (document analysis, participant observation, semi-structured interviews and photo elicitation) in order to explore the patient experience within this changing health care milieu, paying particular attention to patients care experiences and work practices. As informed and framed by feminist political economy, this project explores the everyday care and work experiences of women diagnosed with cancer as situated within the broader social, political, and economic contexts in which cancer care and work are anchored. Analysis traces key tensions and conflicts between policy directions and the everyday environments where care takes place. The findings illuminate that, in the absence of suitable and sustained institutional and funding support, ideological changes that appear to be in line with improved patient autonomy and control (e.g., person-centeredness, patient involvement and self-management) more closely resemble increased individual responsibility and work for which little choice is given. In the empty spaces between policy promises and care practices, the findings reveal a new responsibility and accountability circuit wherein access to good quality care increasingly rests on patient action/inaction, thus rendering opportunities for care more inequitable. The delivery of psychosocial and supportive care through ELLICSR made a critical difference in the care experiences of study participants; however, the precarity of this space demonstrates the lack of commitment to the proposed goals of reforms. As our health care system changes, we must take up a context-sensitive approach that invites engagement with the messiness and complexity of cancer care as conceptualized, practiced, and lived

Donor outcomes in anonymous live liver donation

BackgroundDeath rates on liver transplant waiting lists range from 5%-25%. Herein, we report a unique experience with 50 anonymous persons who volunteered to address this gap by offering to donate part of their liver to a recipient with whom they had no biological connection or prior relationship (A-LLD).MethodsCandidates were screened to confirm excellent physical, mental, social, and financial health. Demographics and surgical outcomes were analyzed. Qualitative interviews after donation examined motivation and experiences. Validated self-reported questionnaires assessed personality traits and psychological impact.Results50 A-LLD liver transplants (LT) were performed between 2005 and 2017. Most donors had a university education, a middle-class income, and a history of prior altruism. Half were women. Median age was 38.5 years (range 20-59 yrs.). Thirty-three (70%) learned about this opportunity through public or social media. Saving a life, helping others, generativity, and reciprocity for past generosity were motivators. Social, financial, healthcare, and legal supports in Canada were identified as facilitators. A-LLD identified most with the personality traits of agreeableness and conscientiousness. The median hospital stay was six days. There was one Dindo-Clavien Grade 3 complication that completely resolved. One-year recipient survival was 91% in 22 adults and 97% in 28 children. No A-LLD reported regretting their decision.ConclusionsThis is the first and only report of the motivations and facilitators of A-LLD in a large cohort. With rigorous protocols, outcomes are excellent. A-LLD has significant potential to reduce the gap between transplant organ demand and availability

Accessing hepatitis C direct acting antivirals among people living with hepatitis C: a qualitative study

Abstract Background Hepatitis C is curable with direct-acting antivirals (DAAs). However, treatment uptake remains low among marginalized populations such as people who inject drugs. We sought to understand challenges to treatment uptake with DAAs among people living with hepatitis C and compare treatment experiences between people who do and do not inject prescription and/or unregulated drugs. Methods We conducted a qualitative study using focus groups with 23 adults aged 18 years and over who completed DAA treatment or were about to begin such treatment at the time of the study. Participants were recruited from hepatitis C treatment clinics across Toronto, Ontario. We drew upon stigma theory to interpret participants’ accounts. Results Following analysis and interpretation, we generated five theoretically-informed themes characterizing the experiences of individuals accessing DAAs: “being ‘worthy’ of the cure”, “spatially enacted stigma”, “countering social and structural vulnerability: the importance of peers”, “identity disruption and contagion: attaining a ‘social cure’” and “challenging stigma with population-based screening”. Overall, our findings suggest that structural stigma generated and reproduced through healthcare encounters limits access to DAAs among people who inject drugs. Peer-based programs and population-based screening were proposed by participants as mechanisms for countering stigma within health care settings and ‘normalizing’ hepatitis C among the general population. Conclusions Despite the availability of curative therapies, access to such treatment for people who inject drugs is limited by stigma enacted in and structured within healthcare encounters. Developing novel, low-threshold delivery programs that remove power differentials and attend to the social and structural determinants of health and reinfection are needed to facilitate further scale up of DAAs and support the goal of eradicating hepatitis C as a public health threat

Cooking for Vitality: Pilot Study of an Innovative Culinary Nutrition Intervention for Cancer-Related Fatigue in Cancer Survivors

(1) Background: Cancer-related fatigue (CRF) is one of the most prevalent and distressing side effects experienced by patients with cancer during and after treatment, and this negatively impacts all aspects of quality of life. An increasing body of evidence supports the role of poor nutritional status in the etiology of CRF and of specific diets in mitigating CRF. We designed a group-based two session culinary nutrition intervention for CRF, Cooking for Vitality (C4V), aimed at increasing understanding of how food choices can impact energy levels and establishing basic food preparation and cooking skills as well as the application of culinary techniques that minimize the effort/energy required to prepare meals. The purpose of this pilot mixed-method study was to evaluate: Feasibility of the experimental methods and intervention; acceptability and perceived helpfulness of intervention; and to obtain a preliminary estimate of the effectiveness of the intervention on fatigue (primary outcome), energy, overall disability, and confidence to manage fatigue (secondary outcomes). (2) Methods: Prospective, single arm, embedded mixed-methods feasibility study of cancer survivors with cancer-related fatigue was conducted. Participants completed measures at baseline (T0), immediately following the intervention (T1), and three months after the last session (T2). Qualitative interviews were conducted at T2. (3) Results: Recruitment (70%) and retention (72%) rates along with qualitative findings support the feasibility of the C4V intervention for cancer survivors living with CRF (program length and frequency, ease of implementation, and program flexibility). Acceptability was also high and participants provided useful feedback for program improvements. Fatigue (FACT-F) scores significantly improved from T0–T1 and T0–T2 (p < 0.001). There was also a significant decrease in disability scores (WHO-DAS 2.0) from T0–T2 (p = 0.006) and an increase in POMS-Vigor (Profile of Mood States) from T0–T1 (p = 0.018) and T0–T2 (p = 0.013). Confidence in managing fatigue improved significantly from T0–T1 and T0–T2 (p < 0.001). (4) Conclusions: The results suggest that the C4V program was acceptable and helpful to patients and may be effective in improving fatigue levels and self-management skills. A randomized controlled trial is required to confirm these findings

CaRE@ELLICSR: Effects of a clinically integrated, group‐based, multidimensional cancer rehabilitation program

Abstract Background Although oncology clinical practice guidelines recognize the need and benefits of exercise, the implementation of these services into cancer care delivery remains limited. We developed and evaluated the impact of a clinically integrated 8‐week exercise and education program (CaRE@ELLICSR). Methods We conducted a mixed methods, prospective cohort study to examine the effects of the program. Each week, participants attended a 1‐h exercise class, followed by a 1.5‐h education session. Questionnaires, 6‐min walk tests (6MWT), and grip strength were completed at baseline (T0), 8 weeks (T1), and 20 weeks (T2). Semi‐structured interviews were conducted with a sub‐sample of participants about their experience with the program. Results Between September 2017 and February 2020, 277 patients enrolled in the program and 210 consented to participate in the research study. The mean age of participants was 55 years. Participants were mostly female (78%), white/Caucasian (55%) and half had breast cancer (50%). Participants experienced statistical and clinically meaninful improvements from T0 to T1 in disability, 6MWT, grip strength, physical activity, and several cancer‐related symptoms. These outcomes were maintained 3 months after program completion (T2). Qualitative interviews supported these findings and three themes emerged from the interviews: (1) empowerment and control, (2) supervision and internal program support, and (3) external program support. Conclusions This study demonstrates the impact of overcoming common organizational barriers to deliver exercise and rehabilitation as part of routine care. CaRE@ELLICSR demonstrated clinically meaningful improvements in patient‐reported and functional outcomes and was considered beneficial and important by participants for their recovery and wellbeing

I'm no superman: Understanding diabetic men, masculinity, and cardiac rehabilitation

Exercise-based cardiac rehabilitation (CR) programs help patients with coronary heart disease (CHD) reduce their risk of recurrent cardiac illness, disability, and death. However, men with CHD and Type 2 diabetes mellitus (T2DM) demonstrate lower attendance and completion of CR despite having a poor prognosis. Drawing on gender and masculinity theory, we report on a qualitative study of 16 Canadian diabetic men recently enrolled in CR. Major findings reflect two discursive positions men assumed to regain a sense of competency lost in illness: (a) working with the experts, or (b) rejection of biomedical knowledge. These positions underscore the varied and sometimes contradictory responses of seriously ill men to health guidance. Findings emphasize the priority given to the rehabilitation of a positive masculine identity. The analysis argues that gender, age, and employment status are powerful mechanisms of variable CR participation