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

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.

"You really need a whole community": a qualitative study of mothers' need for and experiences with childcare support during cancer treatment and recovery.

PURPOSE: A cancer diagnosis poses unique challenges for moms with young children who must balance illness-management alongside existing paid (e.g., employment) and unpaid (e.g., domestic/caregiving) work. The goal of this study was to improve understanding of the support needs of mothers living with cancer and their experiences receiving psychosocial and childcare support from a community organization, the Nanny Angel Network (NAN). METHODS: Mothers who accessed NAN services during their cancer treatment and/or recovery (N = 20) participated in qualitative semi-structured interviews. Thematic analysis was used to inductively and deductively identify emerging patterns in the data and theoretical abduction was applied to further interpret participants' accounts using a feminist political economy framework. RESULTS: Participants expressed how balancing the demands of patienthood and parenthood was challenging and how cancer treatment created new needs for support with care work. Mothers explained that NAN offered indispensable family-centered support largely missing from the health care system, promoting improved physical, psychosocial, and relational health for them and their families. While accessible from a cost-perspective, participants identified different pathways, including awareness, cross-system collaboration, and stable funding, that limited timely access to NAN. CONCLUSION: Access to family-centered care, such as that offered through NAN, was vital to the health and healing of the study participants and their families. Improved collaboration with and investment in community organizations like NAN that have a strong infrastructure to support moms living with cancer offers a practical, feasible, and immediate solution to help address some of the distinct challenges this population faces.

The work of managing multiple myeloma and its implications for treatment-related decision making: a qualitative study of patient and caregiver experiences.

BACKGROUND: The evolving nature of multiple myeloma (MM) therapies, including the introduction of novel oral agents, has produced a shift in the delivery of care from hospital to home. Within this context, patients and their caregivers are becoming increasingly engaged in the work of illness management, however the exact nature of this work as well as the ways in which this work informs treatment preferences and decisions within this population has not been explored. This qualitative study sought to develop an in-depth understanding of patient and caregiver experiences with different MM treatments, the work necessitated by MM and treatment management, and the processes of patient/caregiver treatment-related decision making. METHODS: Qualitative interviews were conducted with 16 MM patients and 8 caregivers. Interviews were coded for emergent themes and patterns and a constant comparative approach was used to identify important similarities and differences within and between interviews. RESULTS: Patient and caregiver participants described four types of work, including the work of accruing and personalizing medical knowledge, illness-related work in the hospital, illness-related work in the home, and psychosocial and relational management. They illuminated the physical, psychological, social and relational toll of this work and traced a pathway through which work informed their treatment-related decisions, sometimes in ways that conflicted with their preferences for treatment. CONCLUSIONS: The work involved in managing MM, its treatment, and side-effects can inform the treatment decisions that patients and caregivers make. We must continue to find meaningful ways for patients and caregivers to discuss goals of care and treatment throughout the cancer trajectory, as well as support health care providers in the delivery of person-centred cancer care. With an increasing emphasis on the importance of shared decision making in MM, an improved understanding of the factors that frame patient's and caregiver's treatment decisions will be paramount to ensuring meaningful and high-quality patient-centered care.

"This is my home-based exercise": exploring environmental influences on home-based exercise participation in oncology.

PURPOSE: Home-based exercise interventions offer many health benefits; however, the environments that constitute home-based exercise are not well-understood. The purpose of this study was to explore what constitutes the "home" for cancer survivors engaging in home-based exercise and identify factors of the environment that may impact exercise participation. METHODS: We conducted a qualitative exploratory study of cancer survivors receiving a home-based exercise prescription to manage their cancer-related impairments. Semi-structured interviews included photo elicitation to actively involve participants in the interview process and provide opportunities to visually "observe" environments utilized for home-based exercise. RESULTS: Sixteen participants were interviewed (n = 11 women, median age = 53.5, range = 26-74 years) and three themes emerged: (1) reasons for participating in a home-based exercise program; (2) physical environmental influences and preferences; and (3) social environmental influences and preferences. The ability to self-manage exercise and accommodate competing demands, having access to exercise facilities, feeling comfortable exercising without qualified supervision, and a desire for autonomy were reasons home-based exercise programs were preferred. Participants reported that the physical environment influenced their experience with home-based exercise and sub-themes related to a dynamic environment, indoor and outdoor characteristics, and aesthetics were identified. The social environment, with sub-themes associated with the presence of people, social climate, exercise modeling, connection, and exercise support, also related to exercise behavior. CONCLUSION: The findings highlight the influence of the physical and social environment on exercise prescription engagement. They further indicate the need for exercise professionals to consider the environment for exercise when delivering home-based exercise interventions.

Variability and limitations in home-based exercise program descriptions in oncology: a scoping review.

BACKGROUND: The literature reflects considerable heterogeneity in what constitutes home-based exercise interventions. The variability for where and what "home-based" exercise can represent challenges interpretation of findings and appropriate advocacy, referral, or development of these models of care. Therefore, the objective of this review was to provide a comprehensive summary of how home-based exercise is defined and reported in the literature and summarize the range of supportive elements utilized in home-based exercise trials. METHODS: We followed methodology for scoping reviews. Relevant research databases were searched from inception to March 2019. Two reviewers independently screened articles to determine eligibility and extracted terminology used to describe home-based exercise and intervention details for intervention delivery. RESULTS: Of the 9432 records identified, 229 articles met inclusion criteria. Across the literature, exercise interventions were described as home-based if they were completed at-home, outdoors in the neighbourhood, and in community facilities; or in self-selected environments; or if they were unsupervised. Supportive elements for home-based models ranged with respect to the amount of supervision and resources utilized, including the provision of print materials, exercise equipment, telephone support, home visits, and technology. CONCLUSIONS: This review provides a comprehensive summary of strategies previously utilized to deliver home-based exercise interventions in oncology, along with the various definitions of the home-based environment for exercise reported by researchers. Specific recommendations to improve the prescription and reporting of home-based exercise interventions are provided in order to facilitate the delivery, evaluation, and translation of findings into clinical practice.

Donor outcomes in anonymous live liver donation.

BACKGROUND & AIMS: Death rates on liver transplant waiting lists range from 5%-25%. Herein, we report a unique experience with 50 anonymous individuals 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, so called anonymous live liver donation (A-LLD). METHODS: Candidates 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. RESULTS: A total of 50 A-LLD liver transplants 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). 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 support in Canada were identified as facilitators. A-LLD identified most with the personality traits of agreeableness and conscientiousness. The median hospital stay was 6 days. One donor experienced a 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. CONCLUSIONS: This is the first and only report of the characteristics, 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. LAY SUMMARY: We report a unique experience with 50 living donors who volunteered to donate to a recipient with whom they had no biological connection or prior relationship (anonymous living donors). This report is the first to discuss motivations, strategies and facilitators that may mitigate physical, social and ethical risk factors in this patient population. With rigorous protocols, anonymous liver donation and recipient outcomes are excellent; with appropriate clinical expertise and system facilitators in place, our experience suggests that other centers may consider the procedure for its significant potential to reduce the gap between transplant organ demand and availability.

"It's Hard Work": A Feminist Political Economy Approach to Reconceptualizing "Work" in the Cancer Context.

Within mainstream cancer literature, policy documents, and clinical practice, "work" is typically characterized as being synonymous with paid employment, and the problem of work is situated within the "return to work" discourse. The work that patients perform in managing their health, care, and everyday life at times of illness, however, is largely overlooked and unsupported. Drawing on feminist political economy theory, we report on a qualitative study of 12 women living with cancer. Major findings show that the work of patienthood cut across multiple fields of practice and included both paid and unpaid labor. The most prevalent types of work included illness work, body work, identity work, everyday work, paid employment and/or the work of maintaining income, and coordination work. The findings of this study disrupt popular conceptualizations of work and illuminate the nuanced and often invisible work that cancer patients may encounter, and the health consequences and inequities therein.

"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.

Patient, family and caregiver engagement in diabetes care: a scoping review protocol.

INTRODUCTION: New treatments and technologies have advanced diabetes care; however, diabetes continues to have a major impact on the daily lives of affected individuals, especially among equity-deserving groups. Evidence from patient engagement literature suggests that involving diverse patients in healthcare can create cost-effective improvements and enhanced efficiency in care that has high patient acceptability and numerous health benefits, as well as improved provider satisfaction. A scoping review will be conducted to provide a cohesive and comprehensive understanding of patient engagement practices and the resulting outcomes. METHODS AND ANALYSIS: The review will follow the recommendations for the conduct of scoping reviews developed by the Joanna Briggs Institute (JBI) Scoping Review Methodology Group. The review will include English-language literature published between 1 January 1990 and the present, searched through MEDLINE (Ovid), Embase (Ovid), CINAHL (EBSCOhost), PsycINFO (Ovid), International Bibliography of the Social Sciences (IBSS), Sociological Abstracts, Applied Social Sciences Index and Abstracts (ASSIA), Scopus, Social Sciences Citation Index and Campbell Collaboration; hand searches; and grey literature. Literature that describes conceptualisations of engagement, methods/strategies for engagement and/or evaluations of engagement across different levels of diabetes care, including direct care, organisational design and governance and policymaking will be included. The review will encompass quantitative, qualitative and mixed-methods studies. Research that is secondary, published in languages other than English, or not specifically focused on patient engagement will be excluded. Screening and extraction will be completed by two independent reviewers and conflicts will be resolved by discussion or a third reviewer, with piloting at each step. Studies will be analysed through descriptive numerical summary and content analysis. ETHICS AND DISSEMINATION: No ethical or safety considerations are pertinent to this work. The results will be disseminated to patients/patient advocacy groups, diabetes organisations, clinicians, researchers, decision-makers and policymakers by way of summary documents, infographics, meeting presentations and through peer-reviewed publications. TRIAL REGISTRATION NUMBER: The protocol has been registered with Open Science Framework: https://doi.org/10.17605/OSF.IO/KCD7Z.

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

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.

Growth through adversity: posttraumatic growth in anonymous living liver donors.

PURPOSE: Post-traumatic growth (PTG) is positive change that occurs after struggling with challenging life crises. Research on PTG has typically been limited to oncology populations, first-responders, and individuals in warzones. We report the experience of PTG amongst a sample of 26 anonymous live liver donors. METHODS: Anonymous donors were those with no biological connection or prior relationship with recipients. Twenty-six participants participated in a semi-structured qualitative interview examining their experience with, and outcomes of donation. Interview transcripts were analyzed for themes about PTG using the constant comparison method. RESULTS: While some donors indicated that donation had little lasting impact on their life, most cited significant personal and interpersonal changes resulting from the experience. The most common positive changes included deepened bonds with others, appreciation for personal strength, clearer life direction, legacy-building, and a connection to the transplant community. CONCLUSION: Despite the short-term physical trauma of living donor surgery, the act of anonymous donation appeared to be a catalyst for positive long-term psychological growth. These findings help to bolster the ethical argument in favour of anonymous donation.IMPLICATIONS FOR REHABILITATIONThere is a shortage of organ donors for recipients in need, and anonymous living liver donors can successfully reduce wait times and mortality rates for those on wait lists.There are some questions about the ethics of anonymous donation due to possible negative physical and psychological effects of donation surgery on donors.In a qualitative study, this study shows that donors ascribe significant meaning to, and derive many psychological benefits from, their donation experience.These findings provide insights about how to best support anonymous donors through and after their donation experience.

Perceptions and Correlates of Distress Due to the COVID-19 Pandemic and Stress Management Strategies Among Adults With Diabetes: A Mixed-Methods Study.

BACKGROUND: Greater risk of adverse health outcomes and public health measures have increased distress among people with diabetes during the coronavirus-2019 (COVID-19) pandemic. The objectives of this study were to explore how the experiences of people with diabetes during the COVID-19 pandemic differ according to sociodemographic characteristics and identify diabetes-related psychosocial correlates of COVID distress. METHODS: Patients with type 1 or 2 diabetes were recruited from clinics and community health centres in Toronto, Ontario, as well as patient networks. Participants were interviewed to explore the experiences of people with diabetes with varied sociodemographic and clinical identities, with respect to wellness (physical, emotional, social, financial, occupational), level of stress and management strategies. Multiple linear regression was used to assess the relationships between diabetes distress, diabetes self-efficacy and resilient coping with COVID distress. RESULTS: Interviews revealed that specific aspects of psychosocial wellness affected by the pandemic, and stress and illness management strategies utilized by people with diabetes differed based on socioeconomic status, gender, type of diabetes and race. Resilient coping (ß=-0.0517; 95% confidence interval [CI], -0.0918 to -0.0116; p=0.012), diabetes distress (ß=0.0260; 95% CI, 0.0149 to 0.0371; p<0.0001) and diabetes self-efficacy (ß=-0.0184; 95% CI, -0.0316 to -0.0052; p=0.007) were significantly associated with COVID distress. CONCLUSIONS: Certain subgroups of people with diabetes have experienced a disproportionate amount of COVID distress. Assessing correlates of COVID distress among people with diabetes will help inform interventions such as diabetes self-management education to address the psychosocial distress caused by the pandemic.

The Meaning Behind the Scar: Anonymous Live Liver Donors' Perceptions of Their Surgical Scars.

BACKGROUND: Scarring can greatly impact quality of life for individuals (ie, causing depression posttraumatic stress disorder and body image issues). Those who wish to be anonymous live liver donors are warned of the potential negative psychological impacts associated with the large scar left from liver donation surgery. Given the unique degree of autonomy that these patients have over their surgery, we explore whether a sample of 26 anonymous live liver donors experience a unique relationship with their scar. METHODS: Anonymous donors participated in a semistructured qualitative interview examining their experience with donation. Interviews were audio-recorded, transcribed, and analyzed using the constant comparison method for themes pertaining, to participants' perception of their scar. RESULTS: Five main themes were identified-a marker of satisfaction about the donation experience, a physical reminder of donation, a trigger for recipient-related thoughts, an awareness tool, and a potential threat to anonymity. Donors did not voice any body image or cosmetic concerns due to their scars. Instead, discussions about the negative aspects of scarring centered around the identifying nature of their scar. CONCLUSIONS: These findings help underscore the distinctiveness of anonymous living liver donors as a patient population. Preparing anonymous living liver donors for different types of cosmetic issues relating to their scar (ie, as a possible threat to their desired anonymity) may be more appropriate than preparing them in the same way as other donor populations.

A qualitative study of a publicly funded pharmacy-dispensed naloxone program.

AIMS: To characterize the experiences of individuals accessing pharmacy-based naloxone and relate these experiences to the risk environments and discourses in which they are embedded. METHODS: We conducted a qualitative study using in-depth interviews of 37 adults aged 18 years and over who had accessed pharmacy-dispensed naloxone. Participants were recruited from across Ontario, Canada, and comprised individuals taking opioids for chronic pain, those taking opioids for reasons other than chronic pain, and individuals acquiring naloxone to act as bystanders in an opioid overdose setting. We drew upon risk environment theory to interpret participants' accounts. RESULTS: Following analysis and interpretation, we generated five theoretically-informed themes characterizing the experiences of individuals accessing pharmacy-dispensed naloxone: 'intersection of naloxone narrative with pharmacy environment', 'individual risk environment and pharmacy-dispensed naloxone uptake', 'safe spaces: creating an enabling environment for pharmacy-dispensed naloxone', 'individuation: becoming a first responder' and 'beyond naloxone: the macro risk environment'. Specifically, participants described how judgement and stereotyping associated with the broader naloxone narrative can be amplified in the space of the pharmacy, leading to fears of reprisals and strategies to mitigate social risk. In addition, the social construction of naloxone as a drug for 'problematic' opioid use and a lack of pharmacist awareness regarding the risk environments in which opioid use occurs was perceived to limit opportunities for optimizing naloxone distribution and training. Finally, participants described approaches that could create enabling environments in the space of the pharmacy while remaining cognizant of the structural changes required in the macro risk environments of people who take opioids. CONCLUSIONS: Despite increasing the availability of naloxone, participants characterized several social and environmental factors that could limit the accessibility of the drug from pharmacies. Strategies to address these factors could create enabling environments within pharmacies that optimize the reach and impact of pharmacy-dispensed naloxone.

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.

Experiences and perspectives of the parents of emerging adults living with type 1 diabetes.

INTRODUCTION: Whereas it is widely recognized that emerging adulthood can be a difficult time in the life of an individual living with type 1 diabetes, relatively little is known about the experiences of their parents or guardians. These individuals once shouldered much of the burden for their child's diabetes 'self'-management, yet their contribution is often overlooked by the adult healthcare system. Here, we set out to gain an understanding of the perspectives of parents of emerging adults living with type 1 diabetes. RESEARCH DESIGN AND METHODS: Semi-structured interviews were performed with a purposeful sample of parents of emerging adults with type 1 diabetes recruited from two urban young adult diabetes clinics and through a national diabetes charity. Thematic coding was derived using a constant comparative approach. RESULTS: Analysis of interviews with 16 parents of emerging adults with type 1 diabetes identified three themes: parental experiences of the transition to adult care; negotiating parent-child roles, responsibilities and relationships; and new and evolving fears. Parents spoke in detail about the time surrounding their child's diagnosis of type 1 diabetes to emphasize the complexity of diabetes care and the need to establish a 'new normal' for the family. In turn, adolescence and emerging adulthood required a renegotiation of roles and responsibilities, with many parents continuing to play a role in high-level diabetes management. Several parents of emerging adults with type 1 diabetes (particularly those of young men) vocalized worries about their child's readiness to assume responsibility for their self-care, and some expressed frustration with the apparent dichotomy in the role expectations of parents between the pediatric and adult care settings. CONCLUSIONS: Adult healthcare providers should recognize both the ongoing involvement of parents in the 'self'-management of emerging adults with type 1 diabetes and the unique aspects of the caregiver burden that they experience.

The 3i Conceptual Framework for Recognizing Patient Perspectives of Type 1 Diabetes During Emerging Adulthood.

Importance: Early emerging adulthood, the developmental life stage roughly spanning between the ages of 18 and 24 years, can be a challenging time for individuals living with type 1 diabetes, being associated with an increased risk of acute complications, loss to follow-up, and the emergence of long-term diabetes complications. Few evidence-based interventions exist, and practice guidelines instead emphasize the importance of delivering individualized, developmentally appropriate care. Objective: To inform the provision of tailored care and education by illuminating the individual lived experiences of emerging adults with type 1 diabetes. Design, Setting, and Participants: This qualitative study used in-depth interviews conducted with 33 emerging adults living with type 1 diabetes between October 14, 2016, and May 16, 2017. Participants were recruited from 2 urban Young Adult Diabetes Clinics in the city of Toronto, Ontario, Canada, using a convenience sampling approach. Narrative analysis of participants' accounts was conducted inductively to define story typology. Main Outcomes and Measures: Participant accounts of type 1 diabetes during childhood, adolescence, and emerging adulthood. Results: Interviews were conducted with 33 participants aged 18 to 24 years (mean [SD] age at interview, 20.6 [1.7] years); 17 (51%) were women. Duration of diabetes ranged from 3 to 20 years (mean [SD] duration, 12.0 [4.8] years). Narrative analysis identified 3 distinct story types, or lenses, termed ingrained (n = 14), intrusive (n = 12), and inconspicuous (n = 7). Ingrained narratives portrayed an active integration of diabetes self-management into daily life. Intrusive narratives were characterized by stories of struggles for acceptance and striving for control. Inconspicuous narratives were differentiated by descriptions of a willingness to ignore diabetes and its attendant daily tasks with the goals of preserving normalcy and limiting distress. Mean levels of hemoglobin A1c were higher in participants conveying an intrusive lens narrative (mean [SD], 9.3% [1.6%]) than those conveying an ingrained lens (mean [SD], 7.4% [0.7%]) (difference between intrusive and ingrained, 1.9%; 95% CI, 0.8%-2.9%; P = .007) or an inconspicuous lens (mean [SD], 8.6% [1.5%]). Conclusions and Relevance: Although every person is unique, there are commonalities in how emerging adults perceive and depict their experiences living with type 1 diabetes. Among the emerging adults interviewed in the present study, the 3i conceptual framework of ingrained, intrusive, and inconspicuous lenses encapsulated these commonalities. Recognition of the different psychosocial contexts surrounding type 1 diabetes during emerging adulthood may help health care professionals individualize their care accordingly.

Gender matters in cardiac rehabilitation and diabetes: Using Bourdieu's concepts.

BACKGROUND: Habitual practices are challenged by chronic illness. Cardiac rehabilitation (CR) involves changes to habits of diet, activity and tobacco use, and although it is effective for people with diabetes and cardiovascular disease (CVD), some participants are reportedly less likely to complete programs and adopt new health related practices. Within the first three months of enrolling in CR, attrition rates are highest for women and for people with diabetes. Previous studies and reviews indicate that altering habits is very difficult, and the social significance of such change requires further study. PURPOSE: The purpose of the study was to use Bourdieu's concepts of habitus, capital and field to analyse the complexities of adopting new health practices within the first three months after enrolling in a CR program. We were particularly interested in gender issues. METHODS: Thirty-two men and women with diabetes and CVD were each interviewed twice within the first three months of their enrolment in one of three CR programs in Toronto, Canada. RESULTS: Attention to CR goals was not always the primary consideration for study participants. Instead, a central concern was to restore social dignity within other fields of activity, including family, friendships, and employment. Thus, study participants evolved improvised tactical approaches that combined both physical and social rehabilitation. These improvised tactics were socially embedded and blended new cultural capital with existing (often gendered) cultural capital and included: concealment, mobilizing cooperation, re-positioning, and push-back. CONCLUSIONS: Our findings suggest that success in CR requires certain baseline levels of capital - including embodied, often gendered, cultural capital - and that efforts to follow CR recommendations may alter social positioning.