"Weighing the Pros and Cons of Everything": A Qualitative Descriptive Study Exploring Perspectives About Living Donor Kidney Transplantation From Parents of Chinese Canadian Pediatric Patients With Chronic Kidney Disease.

Background: As of 2021, more than 6000 children and youth in Canada were living with end-stage kidney disease (ESKD), for which kidney transplantation is considered the preferred treatment by health professionals. Research shows that living donor kidney transplantation (LDKT) has superior allograft and recipient survival compared to deceased donor kidney transplantation (DDKT). However, in a pediatric setting, the choice of LDKT or DDKT is a summative consideration of factors weighed carefully by the patient's family, health care team, and patient. Decision-making surrounding transplantation may be more complex for racial and ethnic minorities as culturally specific values and beliefs are interwoven within dominant understandings and concepts of health and accepted models of health care. For example, Chinese Canadians have an increased risk of ESKD, yet reduced access to LDKT compared to White patients, despite being the largest visible minority population in Canada. Objective: The objective of this qualitative study is to deepen our understandings of the decision-making process surrounding DDKT versus LDKT among parents of Chinese Canadian pediatric patients with chronic kidney disease (CKD). Design: Qualitative descriptive study design. Setting: The Nephrology Program at The Hospital for Sick Children in Toronto, Canada. Participants: Caregivers of Chinese Canadian patients with CKD, 18 years of age or older, and who spoke English, Cantonese, or Mandarin. Methods: One-on-one, semistructured interviews were conducted virtually, by a member of the research team and were audio-recorded and transcribed verbatim. Thematic analysis was used to explore participants' shared experience. Results: Seven interviews were conducted with 6 mothers and 1 father of 6 Chinese Canadian pediatric patients with CKD: 4 patients had undergone a kidney transplant, and 2 were not yet listed for transplant. Analysis of data highlighted that cultural influences affected whether parents shared with others about their child's illness and experience. The cultural understanding that it is inappropriate to burden others contributed to the creation of an isolating experience for participants. Cultural influences also impacted whether parents asked others to be a living donor as participants articulated this would place a physical burden on the living donor (e.g., potential risk to their health) and an emotional burden on the participant as they would be indebted to a willing donor. Ultimately, parents' decision to choose DDKT or LDKT for their patient-child was a result of evaluating both options carefully and within an understanding that the ideal treatment choice reflected what was best for all family members. Limitations: Findings reflect experiences of a small sample from a single recruitment site which may limit transferability. Conclusions: Parents in this study felt that they had access to the necessary evidence-based information to make an informed decision about the choice of DDKT versus LDKT for their child. Participant narratives described feeling isolated within cultural communities of family and friends and participants' suggestion of benefiting from increased support may guide future research directions. Practitioners can offer direct and indirect support to families, with recognition of the importance of cultural values and family-centered care on decision-making within families. Opportunities are needed for accessible, virtual social support platforms to increase parental feelings of culturally mediated peer support from parents who share similar experiences.

Contexte: En 2021, plus de 6000 enfants et jeunes au Canada vivaient avec une insuffisance rénale terminale (IRT), une affection pour laquelle la transplantation rénale est considérée comme le traitement préférentiel par les professionnels de la santé. La recherche montre que la transplantation d'un rein de donneur vivant (TRDV) présente des taux de survie du greffon et du receveur supérieurs à ceux de la transplantation d'un rein de donneur décédé (TRDD). En contexte pédiatrique, le choix entre la TRDV et la TRDD fait l'objet d'une évaluation sommative de facteurs soigneusement pesés par le patient, sa famille et l'équipe de soins. La prise de décision entourant la transplantation peut s'avérer encore plus complexe pour les personnes issues des minorités raciales et ethniques, car des valeurs et croyances spécifiques à la culture sont imbriquées dans les conceptions et concepts dominants de la santé et les modèles de soins acceptés. Les Canadiens d'origine chinoise, par exemple, présentent un risque accru d'IRT, mais leur accès à la TRDV est réduit par rapport aux patients d'origine caucasienne, bien qu'ils constituent la plus importante minorité visible dans la population Canadienne. Objectif: L'objectif de cette étude qualitative est d'approfondir notre compréhension du processus décisionnel entourant le choix entre la TRDD et la TRDV chez les parents de patients pédiatriques d'origine chinoise atteints d'insuffisance rénale chronique (IRC). Conception: Étude qualitative et descriptive. Cadre: Le program de néphrologie de l'Hospital for Sick Children de Toronto (Canada). Sujets: Des adultes proches aidants de patients Canadiens d'origine chinoise atteints d'IRC et parlant anglais, cantonais ou mandarin. Méthodologie: Des entrevues individuelles semi-structurées ont été menées en mode virtuel par un membre de l'équipe de recherche; les entrevues ont été enregistrées (audio) et transcrites textuellement. L'analyze thématique a été utilisée pour explorer l'expérience commune des participants. Résultats: Sept entrevues ont été menées auprès des parents (6 mères et un père) de 6 patients pédiatriques Canadiens d'origine chinoise atteints d'IRC: quatre avaient subi une greffe rénale, les deux autres n'étaient pas encore inscrits sur la liste pour une transplantation. L'analyze des données a révélé que les influences culturelles affectaient la façon dont les parents parlent de la maladie et de l'expérience de leur enfant avec d'autres personnes. La conception d'origine culturelle selon laquelle il n'est pas approprié d'accabler les autres a contribué à créer de l'isolement chez les participants. Les influences culturelles ont également interféré dans le fait de demander ou non à d'autres personnes d'être donneurs vivants; les participants ont expliqué que le don vivant imposait un fardeau physique au donneur vivant (p. ex., un risque pour sa santé) et un fardeau émotionnel au participant, car ceux-ci seraient redevables au donneur consentant. La décision des parents de choisir la TRDD ou la TRDV pour leur enfant aura finalement été le résultat d'une évaluation minutieuse des deux options, avec la perspective que le choix de traitement idéal reflétait ce qui était le mieux pour tous les membres de la famille. Limites: Ces résultats reflètent les expériences d'un faible échantillon de sujets provenant d'un seul centre, ce qui peut limiter la transférabilité. Conclusion: Les parents interrogés pour cette étude estimaient avoir eu accès aux informations factuelles nécessaires pour prendre une décision éclairée dans leur choix entre la TRDD et la TRDV pour leur enfant. Les récits des participants ont décrit leur sentiment d'isolement au sein des communautés culturelles de la famille et des amis; la suggestion des participants de bénéficier d'un soutien accru pourrait guider les orientations futures de la recherche. Les praticiens peuvent offrir un soutien direct et indirect aux familles en reconnaissant l'importance des valeurs culturelles et des soins centrés sur la famille dans la prise de décisions par les familles. Il est nécessaire de créer des plateformes de soutien social virtuelles et accessibles, afin que les parents aient le sentiment de bénéficier davantage du soutien culturel d'autres parents qui partagent des expériences similaires.

Racialized and Immigrant Status and the Pursuit of Living Donor Kidney Transplant - a Canadian Cohort Study.

Introduction: Both immigrant and racialized status may be associated with the pursuit of living donor kidney transplant (LDKT). Methods: This study was a secondary analysis of a convenience cross-sectional sample of patients with kidney failure in Toronto, obtained from our "Comprehensive Psychosocial Research Data System" research database. The exposures included racialized, immigrant, and combined immigrant and racialized status (White nonimmigrant, racialized nonimmigrant, White immigrant and racialized immigrant). Outcomes include the following: (i) having spoken about LDKT with others, (ii) having a potential living donor (LD) identified, (iii) having allowed others to share the need for LDKT, (iv) having directly asked a potential donor to be tested, and (v) accept a hypothetical LDKT offer. We assessed the association between exposure and outcomes using univariable, and multivariable binary or multinominal logistic regression (reference: White or White nonimmigrant participants). Results: Of the 498 participants, 281 (56%) were immigrants; 142 (28%) were African, Caribbean, and Black (ACB); 123 (25%) were Asian; and 233 (47%) were White. Compared to White nonimmigrants, racialized immigrants (relative risk ratio [RRR]: 2.98; 95% confidence interval [CI]: 1.76-5.03) and racialized nonimmigrants (RRR: 2.84; 95% CI: 1.22-6.65) were more likely not to have spoken about LDKT with others (vs. having spoken or planning to do so). Both racialized immigrant (odds ratio [OR]: 4.07; 95% CI: 2.50-6.34), racialized nonimmigrants (OR: 2.68; 95% CI: 1.31-5.51) and White immigrants (OR: 2.68; 95% CI: 1.43-5.05) were more likely not to have a potential LD identified. Conclusion: Both racialized and immigrant status are associated with less readiness to pursue LDKT. Supporting patients to communicate their need for LDKT may improve equitable access to LDKT.

Information needs across time after a hematological cancer diagnosis: A qualitative study of patient and clinician perspectives.

OBJECTIVE: The aim of this study was to characterize the information needs experienced by adult patients across the continuum of their hematological cancer. METHODS: Individual semi-structured telephone interviews were conducted with 28 adults with hematological cancer and 18 clinicians recruited from across Canada and analyzed using interpretive description. RESULTS: Distinct information needs were organized across seven points of the cancer continuum: prior to diagnosis, at diagnosis, prior to treatment, during treatment, after treatment, relapse/non-response, and end of life. Patients' information needs reflected a desire to better understand their current physical and psychosocial circumstances, as well as how to make decisions about their treatment, self-management, and health care. The need to receive information in a preparatory way was relevant across all phases of the cancer continuum. CONCLUSION: Our work contributes an initial approach for providing patient education and counselling for people with hematological cancers, which can be tailored based on individuals' unique characteristics and treatment pathways. PRACTICE IMPLICATIONS: Adults with hematological cancers require information to support decision making over the course of their diagnosis, treatment, and survivorship, but can experience information overwhelm. These findings provide an approach for organizing the delivery of information based on different points of need across the cancer continuum.

Exploring barriers to living donor kidney transplant for African, Caribbean and Black communities in the Greater Toronto Area, Ontario: a qualitative study protocol.

INTRODUCTION: Living donor (LD) kidney transplant (KT) is the best treatment option for many patients with kidney failure as it improves quality of life and survival compared with dialysis and deceased donor KT. Unfortunately, LDKT is underused, especially among groups marginalised by race and ethnicity. African, Caribbean and Black (ACB) patients are 60%-70% less likely to receive LDKT in Canada compared with white patients. Research from the USA and the UK suggests that mistrust, cultural and generational norms, access, and affordability may contribute to inequities. To date, no Canadian studies have explored the beliefs and behaviours related to LDKT in ACB communities. Research approaches that use a critical, community-based approach can help illuminate broader structural factors that may shape individual beliefs and behaviours. In this qualitative study, we will investigate barriers to accessing LDKT in ACB communities in the Greater Toronto Area, to enhance our understanding of the perspectives and experiences of ACB community members, both with and without lived experience of chronic kidney disease (CKD). METHODS AND ANALYSIS: Hospital-based and community-based recruitment strategies will be used to recruit participants for focus groups and individual interviews. Participants will include self-identified ACB individuals with and without experiences of CKD and nephrology professionals. Collaboration with ACB community partners will facilitate a community-based research approach. Data will be analysed using reflexive thematic analysis and critical race theory. Findings will be revised based on feedback from ACB community partners. ETHICS AND DISSEMINATION: This study has been approved by the University Health Network Research Ethics Board UHN REB file #15-9775. Study findings will contribute to the codevelopment of culturally safe and responsive educational materials to raise awareness about CKD and its treatments and to improve equitable access to high-quality kidney care, including LDKT, for ACB patients.

A Qualitative Study of the Everyday Impacts of Cognitive Difficulties After Stem Cell Transplantation.

PURPOSE: To explore how cognitive difficulties affect the everyday lives of survivors of allogeneic hematopoietic stem cell transplantation (allo-HSCT). PARTICIPANTS & SETTING: 20 survivors of allo-HSCT attending follow-up care at a tertiary cancer center in Toronto, Canada. METHODOLOGIC APPROACH: This qualitative, descriptive study used semistructured interviews. FINDINGS: Cognitive symptoms affected the everyday lives of allo-HSCT survivors by changing the experience of everyday tasks, provoking emotional responses, and prompting adoption of mitigation strategies. Subthemes within each of these themes highlight the ways in which cognitive impairment shapes how allo-HSCT survivors feel about themselves, interact with others, and navigate coping challenges. IMPLICATIONS FOR NURSING: These findings demonstrate the multidimensional experience of cognitive difficulties following allo-HSCT and may inform the development of patient-centered approaches to assessing and managing cognitive difficulties.

Experiences of transitioning between settings of care from the perspectives of patients with advanced illness receiving specialist palliative care and their family caregivers: A qualitative interview study.

BACKGROUND: Transitions between care settings (hospice, hospital and community) can be challenging for patients and family caregivers and are often an under-researched area of health care, including palliative care. AIM: To explore the experience of transitions between care settings for those receiving specialist palliative care. DESIGN: Qualitative study using thematic analysis. SETTING/PARTICIPANTS: Semi-structured interviews were conducted with adult patients (n = 15) and family caregivers (n = 11) receiving specialist palliative care, who had undergone at least two transitions. RESULTS: Four themes were identified. (1) Uncertainty about the new care setting. Most participants reported that lack of information about the new setting of care, and difficulties with access and availability of care in the new setting, added to feelings of uncertainty. (2) Biographical disruption. The transition to the new setting often resulted in changes to sense of independence and identity, and maintaining normality was a way to cope with this. (3) Importance of continuity of care. Continuity of care had an impact on feelings of safety in the new setting and influenced decisions about the transition. (4) Need for emotional and practical support. Most participants expressed a greater need for emotional and practical support, when transitioning to a new setting. CONCLUSIONS: Findings provide insights into how clinicians might better negotiate transitions for these patients and family caregivers, as well as improve patient outcomes. The complexity and diversity of transition experiences, particularly among patients and families from different ethnicities and cultural backgrounds, need to be further explored in future research.

Barriers to Accessing Kidney Transplantation Among Populations Marginalized by Race and Ethnicity in Canada: A Scoping Review Part 2-East Asian, South Asian, and African, Caribbean, and Black Canadians.

BACKGROUND: Kidney transplantation (KT), a treatment option for end-stage kidney disease (ESKD), is associated with longer survival and improved quality of life compared with dialysis. Inequities in access to KT, and specifically, living donor kidney transplantation (LDKT), have been documented in Canada, along various demographic dimensions. In this article, we review existing evidence about inequitable access to KT and LDKT for patients from communities marginalized by race and ethnicity in Canada. OBJECTIVE: To characterize the currently published data on rates of KT and LDKT among East Asian, South Asian, and African, Caribbean, and Black (ACB) Canadian communities and to answer the research question, "what factors may influence inequitable access to KT among East Asian, South Asian, and ACB Canadian communities?." ELIGIBILITY CRITERIA: Databases and gray literature were searched in June and November 2020 for full-text original research articles or gray literature resources addressing KT access or barriers in East Asian, South Asian, and ACB Canadian communities. A total of 25 articles were analyzed thematically. SOURCES OF EVIDENCE: Gray literature and CINAHL, OVID Medline, OVID Embase, and Cochrane databases. CHARTING METHODS: Literature characteristics were recorded and findings which described rates of and factors that influence access to KT were summarized in a narrative account. Key themes were subsequently identified and synthesized thematically in the review. RESULTS: East Asian, South Asian, and ACB communities in Canada face barriers in accessing culturally appropriate medical knowledge and care and experience inequitable access to KT. Potential barriers include gaps in knowledge about ESKD and KT, religious and spiritual concerns, stigma of ESKD and KT, health beliefs, social determinants of health, and experiences of systemic racism in health care. LIMITATIONS: This review included literature that used various methodologies and did not assess study quality. Data on ethnicity and race were not reported or defined in a standardized manner. The communities examined in this review are not homogeneous and views on organ donation and KT vary by individual. CONCLUSIONS: Our review has identified potential barriers for communities marginalized by race and ethnicity in accessing KT and LDKT. Further research is urgently needed to better understand the barriers and support needs of these communities, and to develop strategies to improve equitable access to LDKT for the growingly diverse population in Canada.

CONTEXTE: La transplantation rénale (TR), une des options de traitement de l'insuffisance rénale terminale (IRT), est associée à une meilleure qualité de vie et à une prolongation de la survie comparativement à la dialyse. Au Canada, les inégalités dans l'accès à la transplantation et plus particulièrement à la transplantation d'un rein provenant d'un donneur vivant (TRDV) ont été documentées selon diverses dimensions démographiques. Cet article fait état des données existantes sur les inégalités d'accès à la TR et à la TRDV des Canadiens issus de communautés marginalisées en raison de la race et de l'ethnicité. OBJECTIFS: L'objectif est bipartite: 1) caractériser les données publiées sur les taux de TR et de TRDV parmi les Canadiens des communautés noires originaires d'Afrique et des Caraïbes (NAC) et les Canadiens originaires de l'Asie de l'Est et de l'Asie du Sud; 2) répondre à la question de recherche « Quels facteurs pourraient mener à un accès inéquitable à la TR pour les Canadiens des communautés NAC et des communautés est-asiatiques et sud-asiatiques? ¼. CRITÈRES D'ADMISSIBILITÉ: Les bases de données et la littérature grise ont été passées en revue en juin et novembre 2020 à la recherche d'articles de recherche originaux (texte intégral) ou de ressources de la littérature grise traitant de l'accès à la TR ou des obstacles rencontrés par les Canadiens des communautés NAC et des communautés est-asiatiques et sud-asiatiques. En tout, 25 articles ont été analysés de façon thématique. SOURCES: La littérature grise et les bases de données CINAHL, OVID Medline, OVID Embase et Cochrane. MÉTHODOLOGIE: Les caractéristiques tirées de la littérature ont été consignées et les conclusions décrivant les taux de TR et les facteurs influençant l'accès ont été résumées sous forme de compte rendu. Les principaux thèmes ont été dégagés puis synthétisés thématiquement. RÉSULTATS: Les Canadiens des communautés NAC, est-asiatiques et sud-asiatiques se heurtent à divers obstacles dans l'accès à des informations et des soins médicaux adaptés à leur culture, ce qui entraîne un accès inéquitable à la TR. Le manque de connaissances concernant l'IRT et la TR, les préoccupations religieuses et spirituelles, la stigmatisation de l'IRT et de la TR, les croyances en matière de santé, les déterminants sociaux de la santé et les expériences de racisme systémique dans les soins de santé figurent parmi les possibles obstacles rencontrés. LIMITES: Cette revue inclut de la documentation dont la méthodologie varie, et la qualité des études retenues n'a pas été évaluée. Les données sur la race et l'ethnicité n'étaient pas consignées ou définies de façon normalisée. Les communautés examinées ne sont pas homogènes, les avis individuels sur le don d'organes et la TR pourraient varier. CONCLUSION: Cet examen de la portée a permis de cerner les obstacles dans l'accès à la TR et à la TRDV rencontrés par les patients des communautés marginalisées en raison de la race et de l'ethnicité. Il est urgent de poursuivre la recherche afin de mieux comprendre les obstacles et les besoins de soutien de ces communautés et pour élaborer des stratégies qui permettront un accès plus équitable à la TRDV à la population de plus en plus diversifiée du Canada.

Barriers to Accessing Kidney Transplantation Among Populations Marginalized by Race and Ethnicity in Canada: A Scoping Review Part 1-Indigenous Communities in Canada.

BACKGROUND: Kidney transplantation (KT), a treatment option for end-stage kidney disease (ESKD), is associated with longer survival and improved quality of life compared with dialysis. Inequities in access to KT, and specifically, living donor kidney transplantation (LDKT), have been documented in Canada along various demographic dimensions. In this article, we review existing evidence about inequitable access and barriers to KT and LDKT for patients from Indigenous communities in Canada. OBJECTIVE: To characterize the current state of literature on access to KT and LDKT among Indigenous communities in Canada and to answer the research question, "what factors may influence inequitable access to KT among Indigenous communities in Canada." ELIGIBILITY CRITERIA: Databases and gray literature were searched in June and November 2020 for full-text original research articles or gray literature resources addressing KT access or barriers in Indigenous communities in Canada. A total of 26 articles were analyzed thematically. SOURCES OF EVIDENCE: Gray literature and CINAHL, OVID Medline, OVID Embase, and Cochrane databases. CHARTING METHODS: Literature characteristics were recorded and findings which described rates of and factors that influence access to KT were summarized in a narrative account. Key themes were subsequently identified and synthesized thematically in the review. RESULTS: Indigenous communities in Canada experience various barriers in accessing culturally safe medical information and care, resulting in inequitable access to KT. Barriers include insufficient incorporation of Indigenous ways of knowing and being in information dissemination and care for ESKD and KT, spiritual concerns, health beliefs, logistical hurdles to accessing care, and systemic mistrust resulting from colonialism and systemic racism. LIMITATIONS: This review included studies that used various methodologies and did not assess study quality. Data on Indigenous status were not reported or defined in a standardized manner. Indigenous communities are not homogeneous and views on organ donation and KT vary by individual. CONCLUSIONS: Our scoping review has identified potential barriers that Indigenous communities may face in accessing KT and LDKT. Further research is urgently needed to better understand barriers and support needs and to develop strategies to improve equitable access to KT and LDKT for Indigenous populations in Canada.

CONTEXTE: La transplantation rénale (TR), une des options de traitement de l'insuffisance rénale terminale (IRT), est associée à une meilleure qualité de vie et à une prolongation de la survie comparativement à la dialyse. Au Canada, les inégalités dans l'accès à la transplantation et plus particulièrement à la transplantation d'un rein provenant d'un donneur vivant (TRDV) ont été documentées selon diverses dimensions démographiques. Cet article fait état des données existantes sur les inégalités d'accès à la TR et à la TRDV des patients canadiens d'origine autochtone. OBJECTIFS: Caractériser les données publiées sur les taux de TR et de TRDV chez les Canadiens d'origine autochtone et répondre à la question de recherche « Quels facteurs pourraient mener à un accès inéquitable à la TR pour les autochtones du Canada? ¼. CRITÈRES D'ADMISSIBILITÉ: Les bases de données et la littérature grise ont été passées en revue en juin et novembre 2020 à la recherche d'articles de recherche originaux (texte intégral) ou de ressources de la littérature grise traitant de l'accès à la TR ou des obstacles rencontrés par les autochtones au Canada. En tout, 26 articles ont été analysés de façon thématique. SOURCES: La littérature grise et les bases de données CINAHL, OVID Medline, OVID Embase et Cochrane. MÉTHODOLOGIE: Les caractéristiques tirées de la littérature ont été consignées et les conclusions décrivant les taux de TR et les facteurs influençant l'accès ont été résumées sous forme de compte rendu. Les principaux thèmes ont été dégagés puis synthétisés thématiquement. RÉSULTATS: Les communautés autochtones du Canada rencontrent divers obstacles dans l'accès à des informations et des soins médicaux adaptés à leur culture, ce qui entraîne un accès inéquitable à la TR. Parmi ces obstacles, on note l'intégration insuffisante des façons d'être et de faire autochtones dans la prestation de soins et dans la diffusion d'informations sur l'IRT et la TR, des préoccupations d'ordre spirituel, des croyances en matière de santé, des obstacles logistiques dans l'accès aux soins, et une méfiance bien intégrée résultant du colonialisme et du racisme systémique. LIMITATIONS: Cette revue inclut de la documentation dont la méthodologie varie, et la qualité des études retenues n'a pas été évaluée. Les données sur le statut d'Autochtone n'étaient pas consignées ou définies de façon normalisée. Les communautés autochtones ne sont pas homogènes, les avis individuels sur le don d'organes et la TR pourraient varier. CONCLUSIONS: Cet examen de la portée a permis de cerner les obstacles dans l'accès à la TR et à la TRDV rencontrés par les patients autochtones du Canada. Il est urgent de poursuivre la recherche afin de mieux comprendre les obstacles et les besoins de soutien, et pour élaborer des stratégies visant un meilleur accès à la TRDV pour les autochtones du Canada.

Delivering Virtual Cancer Rehabilitation Programming During the First 90 Days of the COVID-19 Pandemic: A Multimethod Study.

OBJECTIVE: To describe the adaptations made to implement virtual cancer rehabilitation at the onset of the coronavirus disease 2019 pandemic, as well as understand the experiences of patients and providers adapting to virtual care. DESIGN: Multimethod study. SETTING: Cancer center. PARTICIPANTS: A total of 1968 virtual patient visits were completed during the study period. Adult survivors of cancer (n=12) and oncology health care providers (n=12) participated in semi-structured interviews. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Framework-driven categorization of program modifications, qualitative interviews with patients and providers, and a comparison of process outcomes with the previous 90 days of in-person care via referrals, completed visits and attendance, method of delivery, weekly capacities, and wait times. RESULTS: The majority of program visits could be adapted to virtual delivery, with format, setting, and content modifications. Virtual care demonstrated an increase or maintenance in the number of completed visits by appointment type compared with in-person care, with attendance ranging from 80%-93%. For most appointment types, capacities increased, whereas wait times decreased slightly. Overall, 168 patients (11% of all assessments and follow-ups) assessed virtually were identified by providers as requiring an in-person appointment because of reassessment of musculoskeletal and/or neurologic impairment (n=109, 65%) and lymphedema (n=59, 35%). The interviews (n=24) revealed that virtual care was an acceptable alternative in some circumstances, with the ability to (1) increase access to care; (2) provide a sense of reassurance during a time of isolation; and (3) provide confidence in learning skills to self-manage impairments. CONCLUSIONS: Many appointments can be successfully adapted to virtual formats to deliver cancer rehabilitation programming. Based on our findings, we provide practical recommendations that can be implemented by providers and programs to facilitate the adoption and delivery of virtual care.

CaRE @ Home: Pilot Study of an Online Multidimensional Cancer Rehabilitation and Exercise Program for Cancer Survivors.

BACKGROUND: Although facility-based cancer rehabilitation and exercise programs exist, patients are often unable to attend due to distance, cost, and other competing obligations. There is a need for scalable remote interventions that can reach and serve a larger population. METHODS: We conducted a mixed methods pilot study to assess the feasibility, acceptability and impact of CaRE@Home: an 8-week online multidimensional cancer rehabilitation and exercise program. Feasibility and acceptability data were captured by attendance and adherence metrics and through qualitative interviews. Preliminary estimates of the effects of CaRE@Home on patient-reported and physically measured outcomes were calculated. RESULTS: A total of n = 35 participated in the study. Recruitment (64%), retention (83%), and adherence (80%) rates, along with qualitative findings, support the feasibility of the CaRE@Home intervention. Acceptability was also high, and participants provided useful feedback for program improvements. Disability (WHODAS 2.0) scores significantly decreased from baseline (T1) to immediately post-intervention (T2) and three months post-intervention (T3) (p = 0.03 and p = 0.008). Physical activity (GSLTPAQ) levels significantly increased for both Total LSI (p = 0.007 and p = 0.0002) and moderate to strenuous LSI (p = 0.003 and p = 0.002) from baseline to T2 and T3. Work productivity (iPCQ) increased from T1 to T3 (p = 0.026). There was a significant increase in six minute walk distance from baseline to T2 and T3 (p < 0.001 and p = 0.010) and in grip strength from baseline to T2 and T3 (p = 0.003 and p < 0.001). CONCLUSIONS: Results indicate that the CaRE@Home program is a feasible and acceptable cancer rehabilitation program that may help cancer survivors regain functional ability and decrease disability. In order to confirm these findings, a controlled trial is required.

Emotional labour in palliative and end-of-life care communication: A qualitative study with generalist palliative care providers.

OBJECTIVE: To explore generalist palliative care providers' experiences of emotional labour when undertaking conversations around palliative and end-of-life care with patients and families, to inform supportive strategies. METHODS: Semi-structured interviews conducted with generalist staff (those providing 'primary' or 'general' palliative care, not palliative care specialists) who had attended a communication workshop. Sampling was purposive (by gender, profession, experience). Data were analysed using a framework approach; a sample of transcripts were double-coded for rigour. Data collection and analysis were informed by theories of emotional labour, coping, and communication. RESULTS: Four ambulance staff, three nurses, two speech and language therapists, and one therapy assistant were interviewed. Five themes emerged: emotions experienced; emotion 'display rules'; emotion management; support needs; and perceived impact of emotional labour. Participants reported balancing 'human' and 'professional' expressions of emotion. Support needs included time for emotion management, workplace cultures that normalise emotional experiences, formal emotional support, and palliative and end-of-life care skills training. CONCLUSION: Diverse strategies to support the emotional needs of generalist staff are crucial to ensure high-quality end-of-life care and communication, and to support staff well-being. PRACTICE IMPLICATIONS: Both formal and informal support is required, alongside skills training, to enable a supportive workplace culture and individual development.

Pathways to breast cancer diagnosis and treatment: exploring the social relations of diagnostic delay

In epidemiological studies, inequitable access to breast cancer care aligns with such variables as income, age, education, ethnicity and residential location. These variables correspond to structural patterns of advantage and disadvantage, which in turn may constrain or facilitate timely access to care. The purpose of this study was to understand the complexities of women's pathways to diagnosis. Thirty-five women from diverse backgrounds and who had clinically detectable breast symptoms at time of diagnosis participated in semi-structured interviews. All were receiving or completing treatment when they participated. Data were analyzed using the strategies of induction, comparison and abduction. All of the participants described a variety of activities involved in seeking care for breast cancer. The findings illustrate how the social relations of health care, rather than simply patient or provider delay, may contribute barriers to timely diagnosis. We illustrate how women's widely differing social and material contexts offer opportunities and barriers to access.

Em estudos epidemiológicos, acessos desiguais para o cuidado ao câncer de mama alinham-se a outras variáveis como salário, idade, educação, etnia e local de moradia. Estas variáveis correspondem aos padrões estruturais de vantagens e desvantagens, as quais por sua vez podem restringir ou facilitar o tempo de acesso ao cuidado. A proposta deste estudo foi entender a complexidade da trajetória das mulheres para o diagnóstico. Trinta e cinco mulheres de diversos meios e que tinham sintomas clinicamente identificados no momento do diagnóstico, participaram de entrevistas semi-estruturadas. Os dados foram analisados utilizando-se estratégias de indução, comparação e abdução. Todas as participantes descreveram uma variedade de atividades envolvidas na busca do cuidado para o câncer de mama. Os achados ilustram como as relações sociais do cuidado a saúde, ao invés de simplificar para a paciente ou retardar o processo, podem se constituir em barreiras ao diagnóstico em tempo adequado. Nós ilustramos como os diferentes contextos sociais e materiais oferecem oportunidades e barreiras para o acesso às mulheres.

De acuerdo a los estudios epidemiológicos, la falta de equidad en el acceso a los servicios de cuidado y tratamiento del cáncer de mama se acompaña de variables tales como renta, edad, nivel de estudios, etnia y lugar de residencia. Estas variables corresponden a patrones estructurales favorecidos o desfavorecidos, que pueden por tanto facilitar o limitar el tiempo de acceso a dichos servicios. El objetivo de este estudio fue el de comprender la complejidad de las trayectorias de las mujeres hacia el diagnóstico. Treinta y cinco mujeres con experiencias diversas y con síntomas de cáncer de mama clínicamente detectables en el momento del diagnóstico, participaron en entrevistas parcialmente estructuradas. Todas ellas recibían y/o habían completado su tratamiento en el momento de su participación. Los datos fueron analizados mediante el empleo de estrategias de inducción, comparación y abducción. Las participantes describieron una amplia variedad de actividades involucradas en la búsqueda de atención de salud para el cáncer de mama. Los hallazgos ilustran cómo las relaciones sociales del cuidado en salud pueden constituir barreras al diagnóstico en un tiempo adecuado, más allá de lo que lo puedan ser el retraso por parte de la paciente o del profesional. Se ilustra además cómo los diversos contextos sociales y materiales de las mujeres generan oportunidades y barreras de acceso a dichos cuidados.

Advice on using over-the-counter nicotine replacement therapy-patch, gum, or lozenge-to quit smoking.

Although the use of over the counter (OTC) nicotine replacement therapy (NRT) is effective for smoking cessation, many concerns and misunderstandings persist that may reduce the effectiveness of NRT. Clinical practice and public health experts responded to a questionnaire that explored challenges associated with promoting proper NRT use and gathered recommendations on overcoming these challenges. Two predominant themes emerged including the identification of policies and practices that hinder NRT use, and smokers' views regarding NRT use. To address these needs, a two-part consensus statement about the use of OTC NRT to quit smoking was developed. The first part of the consensus statement identifies policy issues. The second part of the consensus statement was developed for smokers to reduce misperceptions and concerns about NRT by providing information on safety and the most effective use of NRT. The statement integrates state of the art clinical practice guidelines in a patient-centered format and presents information for policy makers to effectively support quit attempts.

Childhood obesity: a school-based approach to increase nutritional knowledge and activity levels.

Although the incidence of childhood obesity is rising at an alarming rate, weight loss programs for children are few and often inaccessible for various reasons, including cost, transportation difficulties, and lack of parental involvement. School-based programs, offered free of charge, make weight management more accessible. School-based health centers have a unique opportunity to assure that schools stay in the forefront of obesity prevention and management. This article discusses one such program that was designed and implemented by the staff of a Louisiana school-based health center.

Most smokeless tobacco use does not cause cigarette smoking: results from the 2000 National Household Survey on Drug Abuse.

Those who either never progress from smokeless tobacco (SLT) to smoking or smoked before using SLT logically cannot have smoking caused by SLT use. The prevalence of such use permits strong inferences about the overall importance of the potential causal effects of SLT on cigarette smoking. We found that the majority of SLT ever users (66%) in the 2000 National Household Survey on Drug Abuse (NHSDA) were noncausal users. For these individuals, SLT use cannot have caused them to smoke. We also compared our results in 2000 with a similar sample in 1987, using current SLT users only. Potentially, the causal uses of SLT were in the minority and had not increased significantly over time (24% in 1987 to 29% in 2000, P>.05). Logistic models showed that, when noncausal users were removed, SLT was a minor predictor of current smoking. This is likely due to linked experimentation. We argue that that the majority of SLT use cannot cause smoking, such that SLT effects on smoking initiation are minimal at best. Policy implications of these findings are discussed.

Regular smokeless tobacco use is not a reliable predictor of smoking onset when psychosocial predictors are included in the model.

Tomar analyzed the CDC's Teenage Attitudes and Practices Survey (TAPS) and reported smokeless tobacco may act as a starter product for or gateway to cigarettes. Regular smokeless tobacco users at baseline were said to be 3.45 times more likely than never users of smokeless tobacco to become cigarette smokers after 4 years (95% CI=1.84-6.47). However, this analysis did not take into account well-known psychosocial predictors of smoking initiation. We reanalyzed TAPS to assess whether including psychosocial predictors of smoking affected the smokeless tobacco gateway effect. Experimenting with smoking, OR=2.09 (95% CI=1.51-2.90); below average school performance, OR=9.32 (95% CI=4.18-20.77); household members smoking, OR=1.49 (95% CI=1.13-1.95); frequent depressive symptoms, OR=2.19 (95% CI=1.25-3.84); fighting, OR=1.48 (95% CI=1.08-2.03); and motorcycle riding, OR=1.42 (95% CI=1.06-1.91) diminished the effect of both regular, OR=1.68 (95% CI=.83-3.41), and never regular smokeless tobacco use, OR=1.41 (95% CI=.96-2.05), to be statistically unreliable. Analyzing results from a sample of true never smokers (never a single puff) showed a similar pattern of results. Our results indicate that complex multivariate models are needed to evaluate recruitment to smoking and single factors that are important in that process. Tomar's analysis should not be used as reliable evidence that smokeless tobacco may be a starter product for cigarettes.

Most smokeless tobacco use is not a causal gateway to cigarettes: using order of product use to evaluate causation in a national US sample.

AIMS: To evaluate non-causal and causal patterns of smokeless tobacco (SLT) and cigarette use; to assess the prevalence of 'non-gateway' and possible 'gateway' patterns of SLT use. DESIGN AND SETTING: Data from the Cancer Control Supplement to the 1987 National Health Interview Survey, a representative survey of non-institutionalized adults in the United States. From reported age at first use, participants were categorized by type and sequence of tobacco product use. SUDAAN 8.0.1 was used for statistical analyses. PARTICIPANTS: Males aged 18-34 (n = 3454), weighted to provide estimates of the US population. A subsample of males aged 23-34 (n = 2614) was analyzed to minimize the possibility of future product switching. MEASUREMENTS: Smoking status, smokeless tobacco (snuff, chewing tobacco, both) use status, age at regular use of cigarettes, age at first use of smokeless tobacco. FINDINGS: Of those 23-34-year-olds who had ever used SLT with or without cigarettes, 77.2% (95% CI: 71.3, 83.3) were classifiable as non-gateway users in that 35.0% (95% CI: 29.9, 40.1) had only used SLT and 42.2% (95% CI: 36.8, 47.7) had used cigarettes first. Cigarette use in younger cohorts was less common, despite increased SLT use. Those who used cigarettes before moist snuff were 2.1 times more likely to have quit smoking (95% CI 1.21,6.39) than cigarette-only users. CONCLUSIONS: The large majority of SLT users are non-gateway users. Causal gateway effects should be of minor concern for policy. SLT may be more likely to prevent smoking than cause it.