What are the impacts of oral complications from cancer therapy on the quality of life of children? A protocol to update a scoping review.

INTRODUCTION: Cancer treatments can damage healthy tissues and organs, and leave harmful impacts on cancer survivors, especially on children and adolescents. The oral effects of cancer treatment can occur during or soon after treatment, or months-even years-later. Cancer treatments can also affect the child, psychologically and socially by hindering their speech, eating, sleeping, and social interactions. These effects can have profound impacts on children's quality of life. Building on a previous review published in 2012, this scoping review aims to identify and map the current evidence base underpinning the oral health-related impacts of cancer treatment on the quality of life of children with cancer. METHODOLOGY AND METHODS: Our methodology is guided by Arksey and O'Malley's methodological framework for scoping reviews, Levac's additions to the framework, and follows the Joanna Briggs Institute Reviewer's Manual. Five electronic databases and grey literature will be systematically searched using a predefined search strategy. Two reviewers will independently screen the retrieved articles using Rayyan software and chart data from included articles. One of the team's senior research members will act as a third reviewer and make the final decision on disputed documents. We will include literature with a focus on oral health-related quality of life of children undergoing cancer treatments. Following the selection of studies, data will be extracted, synthesized, and reported thematically and the relevant stakeholder's insight will be added to our results.

Perceptions of Inuit Women and Non-Inuit Healthcare Providers on the Implementation of Human Papillomavirus Self-Sampling as an Alternative Cervical Cancer Screening Method in Nunavik, Northern Quebec.

Human papillomavirus (HPV) self-sampling offers a cervical cancer (CC) screening alternative that can address certain barriers to the Papanicolaou test. As part of a larger community-based participatory project in Nunavik, Northern Québec, we travelled to two communities to gather perspectives from Inuit women and healthcare professionals (HCPs) on CC screening services and the possible implementation of HPV self-sampling. We held 10 group discussions with 28 Inuit women and 10 semi-structured interviews with 20 HCPs. The thematic analysis extracted themes reflecting one barrier and seven facilitators to accessing CC screening and the implementation of HPV self-sampling in Nunavik. Themes included, though not limited to, language and communication in health settings, access to culturally responsive educational resources on CC, and the noninvasive nature of HPV self-sampling. This study may serve to contribute to the co-development of a strategy for implementation that is designed according to the needs and priorities of the communities.

"Reflection and soul searching": Negotiating nursing identity at the fault lines of palliative care and medical assistance in dying.

Authorities within the field of palliative care frequently espouse that assisted death is - and must remain - separate from palliative care. This fault line, between palliative care and assisted death, has important implications for how we enact end-of-life care, particularly in jurisdictions where assisted death is legal. And yet little is known about how direct-care clinicians providing palliative care navigate this demarcation in everyday practice. This qualitative study reports on semi-structured interviews with 22 palliative care nurses from across Canada, where assisted death was legalized in 2016. Although a minority of participants did express categorical opinions around the (non) legitimacy of assisted death as an ethical end-of-life care option, most engaged in an ongoing and sometimes painful process of questioning and self-examination. Their ethical reflections were more nuanced than simply dismissing MAiD as incompatible with palliative care philosophy; yet this idea of incompatibility weighed heavily as they reasoned through their experiences and questioned their own perspectives. Nurses described grappling with the finality of assisted death, which contradicts their belief in the telos of palliative care; when adequately resourced, palliative care should be available to support people to live well before death. At the same time, commitment to important palliative care values such as the non-abandonment of dying people and respecting peoples' individual end-of-life choices reveal the possibility of overlap between the ethos of assisted death and that of palliative care nursing. Drawing on scholarship in feminist ethics, our study sheds light on the moral identity work that assisted dying catalyzes amongst palliative care nurses. We highlight what is at stake for them as they navigate a delicate tension in responding ethically to patients whose suffering motivates an interest in assisted death, from within a wider professional collective that upholds a master narrative about the incompatibility of assisted death and palliative care.

Oral Health Implications of Cannabis Smoking: A Rapid Evidence Review.

OBJECTIVES: To summarize evidence relating cannabis smoking and oral disease and highlight any potential influence of cannabis smoking on clinical care and dental public health. METHODS: Using rapid evidence review, a librarian facilitated a systematic search of 5 electronic databases in August and September 2018 and updated it in March 2019, yielding 581 publications. Two researchers screened the documents using pre-established inclusion criteria: article was based on primary or secondary data; cannabis smoking was an exposure; at least 1 cannabis-related oral health outcome was reported; participants were humans; and the article was available in English or French. Data from retained articles were analyzed for themes without meta-analysis. RESULTS: We synthesized and summarized 23 articles in 2 broad categories: cannabis and oral disease; and cannabis, clinical care and dental public health. Current evidence shows that smoking cannabis is harmful to the health of the periodontium. The association between smoking cannabis and other oral disease (dental caries, soft tissue lesions and oral cancers) is sparse and inconsistent, although studies suggest that cannabis smoking is an underlying risk factor. Cannabis smoking can lead to an altered mental state that can delay dental treatment of the patient. Further, interactions between smoked cannabis and adrenaline-containing local anesthetics can result in life-threatening consequences. CONCLUSIONS: Cannabis smoking is harmful to the periodontium. Further research is needed to fully understand how cannabis smoking affects oral disease and how dental professionals should integrate this knowledge into clinical care and dental public health.

HPV Self-sampling in Indigenous Communities: A Scoping Review.

Indigenous women have higher rates of cervical cancer and cervical cancer mortality compared to non-Indigenous women, as well as unique challenges to accessing screening services. Human papillomavirus (HPV) self-sampling has been demonstrated as an effective measure to reach under-screened women. A scoping review identified 19 sources matching selection criteria through a systematic search of PubMed and Scopus completed in May 2018. Analysis revealed that this is a limited field of research; albeit one that has undergone growth in the last 7 years. HPV self-sampling is identified as easy, convenient, comfortable and private and is often preferred over Papanicolaou (Pap) testing. Despite largely positive experiences, several studies indicated that some women lacked confidence in their ability to adequately self-sample. HPV self-sampling may be an effective intervention where Pap testing adherence is low but should include supporting resources and community input so as to best tailor implementations to each community.

A scoping review of the moral experiences of children with medical complexity in Brazil / Una revisión de alcance de las experiencias morales de niños con complejidad médica en Brasil / Uma revisão de escopo das vivências morais de crianças com complexidade médica no Brasil

ABSTRACT Objectives: The aim of this review was to identify and summarize how the moral experiences of children with medical complexity are being expressed within the Brazilian health-related literature and discuss research gaps and directions for future research. Methods: A scoping review was performed using the methodological framework of Arksey and O'Malley and the Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR). Systematic searches were conducted on Medline, CINAHL, Scopus, and Embase databases. Articles were included if using qualitative methodologies, having children as participants, and published in Brazil. Results: In total, 6,360 articles were retrieved from databases. Sixteen studies were selected for the analysis. Final considerations: The studies were not primarily focused on children's moral experiences. Yet, the studies demonstrate morally relevant accounts concerning children's capacity to reason and interpret their lived experiences, expressing deep concerns about isolation, suffering, future aspirations, and feelings of normality.

RESUMEN Objetivos: identificar y sintetizar cómo se expresan las experiencias morales de los niños con complejidad médica en la literatura brasileña relacionada con la salud y discutir las brechas de investigación y las directrices para futuras investigaciones. Métodos: se realizó una revisión de alcance utilizando el marco metodológico de Arksey y O'Malley, los elementos de informes preferidos para las revisiones sistemáticas y la extensión de la declaración de PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) para las revisiones de alcance (PRISMA-ScR). Se realizaron búsquedas sistemáticas en las bases de datos Medline, CINAHL, Scopus y Embase. Los artículos se incluyeron según los criterios: con metodologías cualitativas, niños como participantes e investigaciones publicadas en Brasil. Resultados: en total, se recuperaron 6.360 artículos de las bases de datos. Dieciséis estudios fueron seleccionados para el análisis. Consideraciones finales: los estudios analizados no se centraron principalmente en las experiencias morales de los niños. Sin embargo, los estudios demuestran relatos moralmente relevantes sobre la capacidad de los niños para razonar e interpretar sus experiencias vividas, expresando profundas preocupaciones sobre el aislamiento, el sufrimiento, las aspiraciones futuras y los sentimientos de normalidad.

RESUMO Objetivos: O objetivo desta revisão foi identificar e sintetizar como as vivências morais de crianças com complexidade médica estão sendo expressas na literatura brasileira relacionada à saúde e discutir lacunas de pesquisa e orientações para pesquisas futuras. Métodos: Uma revisão de escopo foi realizada, usando o referencial metodológico de Arksey e O'Malley, os Itens de Relatórios Preferenciais para Revisões Sistemáticas e a extensão de Meta-Análises para Revisões de Escopo (PRISMA-ScR). Pesquisas sistemáticas foram conduzidas nos bancos de dados Medline, CINAHL, Scopus e Embase. Os artigos foram incluídos de acordo com os critérios: possuir metodologias qualitativas, crianças como participantes e pesquisas publicadas no Brasil. Resultados: No total, 6.360 artigos foram recuperados dos bancos de dados. Dezesseis estudos foram selecionados para a análise. Considerações finais: Os estudos analisados não estavam focados primariamente nas experiências morais das crianças. No entanto, os estudos demonstram relatos moralmente relevantes sobre a capacidade das crianças de raciocinar e interpretar suas experiências vividas, expressando profundas preocupações sobre isolamento, sofrimento, aspirações futuras e sentimentos de normalidade.

A scoping review of the moral experiences of children with medical complexity in Brazil / Una revisión de alcance de las experiencias morales de niños con complejidad médica en Brasil / Uma revisão de escopo das vivências morais de crianças com complexidade médica no Brasil

ABSTRACT Objectives: The aim of this review was to identify and summarize how the moral experiences of children with medical complexity are being expressed within the Brazilian health-related literature and discuss research gaps and directions for future research. Methods: A scoping review was performed using the methodological framework of Arksey and O'Malley and the Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR). Systematic searches were conducted on Medline, CINAHL, Scopus, and Embase databases. Articles were included if using qualitative methodologies, having children as participants, and published in Brazil. Results: In total, 6,360 articles were retrieved from databases. Sixteen studies were selected for the analysis. Final considerations: The studies were not primarily focused on children's moral experiences. Yet, the studies demonstrate morally relevant accounts concerning children's capacity to reason and interpret their lived experiences, expressing deep concerns about isolation, suffering, future aspirations, and feelings of normality.

RESUMEN Objetivos: identificar y sintetizar cómo se expresan las experiencias morales de los niños con complejidad médica en la literatura brasileña relacionada con la salud y discutir las brechas de investigación y las directrices para futuras investigaciones. Métodos: se realizó una revisión de alcance utilizando el marco metodológico de Arksey y O'Malley, los elementos de informes preferidos para las revisiones sistemáticas y la extensión de la declaración de PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) para las revisiones de alcance (PRISMA-ScR). Se realizaron búsquedas sistemáticas en las bases de datos Medline, CINAHL, Scopus y Embase. Los artículos se incluyeron según los criterios: con metodologías cualitativas, niños como participantes e investigaciones publicadas en Brasil. Resultados: en total, se recuperaron 6.360 artículos de las bases de datos. Dieciséis estudios fueron seleccionados para el análisis. Consideraciones finales: los estudios analizados no se centraron principalmente en las experiencias morales de los niños. Sin embargo, los estudios demuestran relatos moralmente relevantes sobre la capacidad de los niños para razonar e interpretar sus experiencias vividas, expresando profundas preocupaciones sobre el aislamiento, el sufrimiento, las aspiraciones futuras y los sentimientos de normalidad.

RESUMO Objetivos: O objetivo desta revisão foi identificar e sintetizar como as vivências morais de crianças com complexidade médica estão sendo expressas na literatura brasileira relacionada à saúde e discutir lacunas de pesquisa e orientações para pesquisas futuras. Métodos: Uma revisão de escopo foi realizada, usando o referencial metodológico de Arksey e O'Malley, os Itens de Relatórios Preferenciais para Revisões Sistemáticas e a extensão de Meta-Análises para Revisões de Escopo (PRISMA-ScR). Pesquisas sistemáticas foram conduzidas nos bancos de dados Medline, CINAHL, Scopus e Embase. Os artigos foram incluídos de acordo com os critérios: possuir metodologias qualitativas, crianças como participantes e pesquisas publicadas no Brasil. Resultados: No total, 6.360 artigos foram recuperados dos bancos de dados. Dezesseis estudos foram selecionados para a análise. Considerações finais: Os estudos analisados não estavam focados primariamente nas experiências morais das crianças. No entanto, os estudos demonstram relatos moralmente relevantes sobre a capacidade das crianças de raciocinar e interpretar suas experiências vividas, expressando profundas preocupações sobre isolamento, sofrimento, aspirações futuras e sentimentos de normalidade.

The Oral Health of Refugees and Asylum Seekers in Canada: A Mixed Methods Study Protocol.

Canada received over 140,000 refugees and asylum seekers between 2015 and 2017. This paper presents a protocol with the purpose of generating robust baseline data on the oral health of this population and build a long-term program of research to improve their access to dental care in Canada. The three-phase project uses a sequential mixed methods design, with the Behavioral Model for Vulnerable Populations as the conceptual framework. In Phase 1a, we will conduct five focus groups (six to eight participants per group) in community organizations in Ontario, Canada, to collect additional sociocultural data for the research program. In Phase 1b, we will use respondent-driven sampling to recruit 420 humanitarian migrants in Ontario and Quebec. Participants will complete a questionnaire capturing socio-demographic information, perceived general health, diet, smoking, oral care habits, oral symptoms, and satisfaction with oral health. They will then undergo dental examination for caries experience, periodontal health, oral pain, and traumatic dental injuries. In Phase 2, we will bring together all qualitative and quantitative results by means of a mixed methods matrix. Finally, in Phase 3, we will hold a one-day meeting with policy makers, dentists, and community leaders to refine interpretations and begin designing future oral health interventions for this population.

Health status, emergency department visits, and oncologists' feedback: An analysis of secondary endpoints from a randomized phase II geriatric assessment trial.

PURPOSE: Geriatric Assessment (GA) can help uncover previously unknown health issues and recommend tailored interventions to optimize outcomes; however, no completed randomized trial has examined the impact of GA on utility-based health status, healthcare use, and oncologists' opinions about GA. We examined these secondary outcomes of a randomized phase II trial. METHODS: A planned analysis of secondary outcomes of a two-group parallel single-blind randomized phase II trial of GA (ClinicalTrials.gov Identifier:NCT02222259) recruited patients ≥ age 70, diagnosed with stage II-IV breast/gastrointestinal/genitourinary cancer within six weeks of beginning chemotherapy at the Princess Margaret Cancer Centre, Toronto, Canada. Descriptive analyses using intent-to-treat were conducted for health status (EuroQol EQ-5D-3L) and healthcare utilization (patient self-report). Oncologist opinions were captured via open-ended interviews and summarized. RESULTS: A total of 95 patients who met the inclusion criteria were approached; 61 of them consented (64%). For health status, at all time-points, there were no significant differences between the two groups. The number of emergency department and family physician visits was low overall; there were no statistically significant differences between the two groups at any time point. All interviewed oncologists (eight of fourteen invited) were satisfied with the intervention, but wanted more straightforward recommendations and earlier GA results. CONCLUSIONS: No difference was found in terms of relationships between GA and utility-based health status or GA and healthcare use. Underreporting of healthcare use was possible. Oncologists welcome GA feedback and prefer to receive it in pre-treatment decision context. Larger trials with earlier GA are warranted.

Of dilemmas and tensions: a qualitative study of palliative care physicians' positions regarding voluntary active euthanasia in Quebec, Canada.

OBJECTIVES: In 2015, the Province of Quebec, Canada passed a law that allowed voluntary active euthanasia (VAE). Palliative care stakeholders in Canada have been largely opposed to euthanasia, yet there is little research about their views. The research question guiding this study was the following: How do palliative care physicians in Quebec position themselves regarding the practice of VAE in the context of the new provincial legislation? METHODS: We used interpretive description, an inductive methodology to answer research questions about clinical practice. A total of 18 palliative care physicians participated in semistructured interviews at two university-affiliated hospitals in Quebec. RESULTS: Participants positioned themselves in opposition to euthanasia. Their justifications were framed within their professional commitment to not hasten death, which sat in tension with the value of patients' autonomy to choose how to die. Participants described VAE as unacceptable if it impeded opportunities to evaluate and alleviate suffering. Further, they contested government rhetoric that positioned VAE as a way to improve end-of-life care. Participants felt that VAE would diminish the potential of palliative care to relieve suffering. Dilemmas were apparent in their narratives, about reconciling respect for patient autonomy with broader palliative care values, and the value of accompanying and not abandoning patients who make requests for VAE while being committed to neither prolonging nor hastening death. CONCLUSIONS: This study provides insight into nuanced positions of experienced palliative care physicians in Quebec and confirms expected tensions between an important stakeholder and the practice of VAE as guided by the new legislation.

'I'm only dealing with the acute issues': How medical ward 'busyness' constrains care of the dying.

Acute hospital units are a common location of death. Curative characteristics of the acute medical setting make it difficult to provide adequate palliative care; these characteristics include an orientation to life-prolonging treatment, an emphasis on routine or task-oriented care and a lack of priority on emotional engagement with patients. Indeed, research shows that dying patients in acute medical units often experience unmet needs at the end of life, including uncontrolled symptoms (e.g. pain, breathlessness), inadequate emotional support and poor communication. A focused ethnography was conducted on an acute medical ward in Canada to better understand how this curative/life-prolonging care environment shapes the care of dying patients. Fieldwork was conducted over a period of 10 months and included participant-observation and interviews with patients, family members and staff. On the acute medical ward, a 'logic of care' driven by discourses of limited resources and the demanding medical unit created a context of busyness. Staff experienced an overwhelming workload and felt compelled to create priorities, which reflected taken-for-granted values regarding the importance of curative/life-prolonging care over palliative care. This could be seen through the way staff prioritized life-prolonging practices and rationalized inconsistent and less attentive care for dying patients. These values influenced care of the dying through delaying a palliative approach to care, limiting palliative care to those with cancer and providing highly interventive end-of-life care. Awareness of these taken-for-granted values compels a reflective and critical approach to current practice and how to stimulate change.

A randomized phase II trial of geriatric assessment and management for older cancer patients.

PURPOSE: Geriatric assessment and management (GAM) can identify current health issues and recommend interventions to optimize well-being of older adults, but no randomized trial has yet been completed in oncology. Therefore, a randomized phase 2 trial was conducted. METHODS: A two-group parallel single-blinded randomized phase II trial ( ClinicalTrials.gov Identifier: NCT02222259) enrolled patients aged ≥70 years, diagnosed with stage 2-4 gastrointestinal, genitourinary, or breast cancer within 6 weeks of commencing chemotherapy at Princess Margaret Cancer Centre. The coprimary feasibility outcomes were the proportion of eligible patients enrolled and retained. The coprimary clinical outcomes were quality of life (QOL) (EORTC QLQ C30) and modification of cancer treatment. Descriptive and regression analyses using intent-to-treat analysis were conducted. RESULTS: Sixty-one persons (64%) agreed to participate (31 allocated to intervention arm and 30 to control group). In the control group, more participants died and refused follow-up. The benefit of intervention over control on QOL at 3 months was greater for those who survived 6 months (difference 9.28; 95% CI -10.35 to 28.91) versus those who survived only 3 months (difference 6.55; 95% CI -9.63 to 22.73). CONCLUSIONS: This trial showed that it was feasible to recruit and retain older adults for a GAM study. Those who survived at least 6 months seemed to receive a greater QOL benefit than those who died or withdrew.

End-of-Life Care in Nunavik, Quebec: Inuit Experiences, Current Realities, and Ways Forward.

BACKGROUND: Increasing longevity for Inuit living in Nunavik, northern Quebec, has resulted in heightened rates of cancers and chronic diseases necessitating complex treatments. Consequently, end-of-life (EOL) care, once the domain of Inuit families and communities, has come to include professionalized healthcare providers with varying degrees of awareness of factors to consider in providing care to Inuit populations. OBJECTIVE: To better understand the factors shaping EOL care in Nunavik to support the development of a sustainable model of care. METHODS: Using focused ethnography, we conducted participant observations and informal and semistructured interviews with 103 participants (community members, healthcare practitioners, and administrators) across Nunavik and in Montreal, the affiliated tertiary care center. Data domains included the following: care trajectories; patient and family experiences receiving and providing EOL care; local and urban resources and challenges; and ways forward. RESULTS: Sociocultural, historical, and geographic factors shape EOL care in Nunavik, presenting a complex set of challenges for Inuit patients, families, and healthcare providers. A sustainable model of EOL care requires building on shared initiatives, capitalizing on the existing strengths in communities, and attending to the multiple bereavement needs in the region. DISCUSSION: Building a sustainable model of EOL care requires respectful collaboration among governing structures, healthcare institutions, and community members. It must centrally value local knowledge and initiatives. To ensure Inuit families and patients are supported throughout the dying process, future initiatives must centrally include local stakeholders in both the design and evaluation of any changes to the current healthcare system.

Understanding How Bereaved Parents Cope With Their Grief to Inform the Services Provided to Them.

Our objective was to develop a rich description of how parents experience their grief in the first year after the death of their child, and how various bereavement follow-up and support services helped them during this time, with the aim of informing follow-up and support services offered to bereaved parents. Our findings situated parents' individual experiences of coping within the social and institutional contexts in which they grieved. In the first year after the death of their child, parents regulated their intense feelings of grief through loss-oriented, restoration-oriented, and/or meaning reconstruction strategies. Often, parents' relationships with others and many of the bereavement follow-up and support services helped them in this regard. This article also explores how the results may aid service providers in accompanying parents in a way that optimizes outcomes for these parents.

Chemotherapy treatment decision-making experiences of older adults with cancer, their family members, oncologists and family physicians: a mixed methods study.

PURPOSE: Although comorbidities, frailty, and functional impairment are common in older adults (OA) with cancer, little is known about how these factors are considered during the treatment decision-making process by OAs, their families, and health care providers. Our aim was to better understand the treatment decision process from all these perspectives. METHODS: A mixed methods multi-perspective longitudinal study using semi-structured interviews and surveys with 29 OAs aged ≥70 years with advanced prostate, breast, colorectal, or lung cancer, 24 of their family members,13 oncologists, and 15 family physicians was conducted. The sample was stratified on age (70-79 and 80+). All interviews were analyzed using thematic analysis. RESULTS: There was no difference in the treatment decision-making experience based on age. Most OAs felt that they should have the final say in the treatment decision, but strongly valued their oncologists' opinion. "Trust in my oncologist" and "chemotherapy as the last resort to prolong life" were the most important reasons to accept treatment. Families indicated a need to improve communication between them, the patient and the specialist, particularly around goals of treatment. Comorbidity and potential side-effects did not play a major role in the treatment decision-making for patients, families, or oncologists. Family physicians reported no involvement in decisions but desired to be more involved. CONCLUSION: This first study using multiple perspectives showed neither frailty nor comorbidity played a role in the treatment decision-making process. Efforts to improve communication were identified as an opportunity that may enhance quality of care. In a mixed methods study multiple perspective study with older adults with cancer, their family members, their oncologist and their family physician we explored the treatment decision making process and found that most older adults were satisfied with their decision. Comorbidity, functional status and frailty did not impact the older adult's or their family members' decision.

Patient participation in palliative care decisions: An ethnographic discourse analysis.

The participation of patients in making decisions about their care is especially important towards the end of life because palliative care decisions involve extensive uncertainty and are heavily influenced by personal values. Yet, there is a scarcity of studies directly observing clinical interactions between palliative patients and their health care providers. In this study, we aimed to understand how patient participation in palliative care decisions is constructed through discourse in a community hospital-based palliative care team. This qualitative study combined ethnographic observations of a palliative care team with discourse analysis. Eighteen palliative care patients with cancer diagnoses, six family physicians, and two nurses were involved in the study. Multiple interactions were observed between each patient and health care providers over the course of 1 year, for a total of 101 consultations, 24 of which were audio-recorded. The analysis consisted in looking for the interpretive repertoires (i.e., familiar lines of argument used to justify actions) that were used to justify patient participation in decision-making during clinical interactions, as well as exploring their implications for decision roles and end-of-life care. Patients and their health care providers seldom addressed their decision-making roles explicitly. Rather, they constructed patient participation in palliative care decisions in a covert manner. Four interpretive repertoires were used to justify patient participation: (1) exposing uncertainty, (2) co-constructing patient preferences, (3) affirming patient autonomy, and finally (4) upholding the authority of health care providers. The results demonstrate how patients and health care providers used these arguments to negotiate their respective roles in decision-making. In conclusion, patients and health care providers used a variety of interpretive repertoires to covertly negotiate their roles in decision-making, and to legitimize decisions that shaped patients' dying trajectories. Discourse analysis encourages awareness of the role of language in either promoting or hindering patient participation in decision-making.

Resident Role Modeling: "It Just Happens".

PURPOSE: Role modeling by staff physicians is a significant component of the clinical teaching of students and residents. However, the importance of resident role modeling has only recently emerged, and residents' understanding of themselves as role models has yet to be explored. This study sought to understand residents' perceptions of themselves as role models, describe how residents learn about role modeling, and identify ways to improve resident role modeling. METHOD: Fourteen semistructured interviews were conducted with residents in internal medicine, general surgery, and pediatrics at the McGill University Faculty of Medicine between April and September 2013. Interviews were audio-recorded and subsequently transcribed for analysis; iterative analysis followed principles of qualitative description. RESULTS: Four primary themes were identified through data analysis: residents perceived role modeling as the demonstration of "good" behaviors in the clinical context; residents believed that learning from their role modeling "just happens" as long as learners are "watching"; residents did not equate role modeling with being a role model; and residents learned about role modeling from watching their positive and negative role models. CONCLUSIONS: While residents were aware that students and junior colleagues learned from their modeling, they were often not aware of role modeling as it was occurring; they also believed that learning from role modeling "just happens" and did not always see themselves as role models. Helping residents view effective role modeling as a deliberate process rather than something that "just happens" may improve clinical teaching across the continuum of medical education.

Promoting an ethic of engagement in pediatric palliative care research.

BACKGROUND: This paper defends the ethical and empirical significance of direct engagement with terminally ill children and adolescents in PPC research on health-related quality of life. Clinical trials and other forms of health research have resulted in tremendous progress for improving clinical outcomes among children and adolescents diagnosed with a life-threatening illness. Less attention has been paid, however, to engaging this patient population directly in studies aimed at optimizing health-related quality of life in PPC. Though not restricted to care at the end of life, PPC--and by extension PPC research--is in part dependent on recognizing the social complexities of death and dying and where health-related quality of life is a fundamental element. To explore these complexities in depth requires partnership with terminally ill children and adolescents, and acknowledgement of their active social and moral agency in research. DISCUSSION: Principles of pediatric research ethics, theoretical tenets of the "new sociology of the child(hood)," and human rights codified in the United Nations Convention on the Rights of the Child (UNCRC) underpin the position that a more engagement-centered approach is needed in PPC research. The ethics, sociologies and human rights of engagement will each be discussed as they relate to research with terminally ill children and adolescents in PPC. Qualitative method(ologies) presented in this paper, such as deliberative stakeholder consultations and phenomenology of practice can serve as meaningful vehicles for achieving i) participation among terminally ill children and adolescents; ii) evidence-bases for PPC best practices; and iii) fulfillment of research ethics principles. CONCLUSION: PPC research based on direct engagement with PPC patients better reflects their unique expertise and social epistemologies of terminal illness. Such an approach to research would strengthen both the ethical and methodological soundness of HRQoL inquiry in PPC.

Why physicians teach: giving back by paying it forward.

CONTEXT: Despite the pace and intensity of the in-patient clinical setting, physicians carve out time for teaching medical students and residents. OBJECTIVES: The goal of this study was to explore what it means for physicians to teach students and residents in the in-patient setting. METHODS: We conducted semi-structured interviews with 15 practising physicians from the departments of internal medicine, surgery and paediatrics in three university teaching hospitals at McGill University, using an interpretive phenomenological methodology. RESULTS: Five themes elucidated the meaning of teaching for physicians in the in-patient setting: (i) teaching was perceived as an integral part of their identity; (ii) teaching allowed them to repay former teachers for their own training; (iii) teaching gave them an opportunity to contribute to the development of the next generation of physicians; (iv) teaching enabled them to learn, and (v) teaching was experienced as personally energising and gratifying. Participants were morally and socially motivated to give time and effort through teaching (e.g. to pay forward their own privilege and thereby help to develop the next generation); teaching also gave them a sense of personal fulfilment (e.g. by allowing them to mould young minds and leave a legacy). CONCLUSIONS: This study holds a number of implications for medical education with relevance to the recruitment and retention of clinical teachers, recognition of clinical teaching, and evidence-informed faculty development. The findings also suggest that teaching in an academic setting can bring joy and fulfilment to practising physicians.

Exploring oral health and hygiene practices in the Algonquin community of Rapid Lake, Quebec.

INTRODUCTION: Early childhood caries (ECC), a disease characterized by tooth decay in the primary teeth of children, has become particularly burdensome in Aboriginal communities in Canada. Prevalence estimates of ECC range between 50% and 100%. Most concerning are the severe cases of ECC that require treatment with restorative surgery under general anesthesia. These surgeries often displace children and families from their local communities to specialty hospitals for treatment; further, they are very costly to dental insurance payers such as the government. This study used community-based participatory research (CBPR) to explore oral health and hygiene practices in the Algonquin community of Rapid Lake, Quebec. A key goal of the study was to create a culturally adapted activity to promote children's oral health and hygiene practices. METHODS: Focused ethnography was used to explore oral health beliefs and practices, and factors related to child oral health promotion with community members. Participants included children, parents, educators, healthcare workers, youth workers and elders. Semi-structured interviews were conducted with key informants. Following, two focus group interviews were conducted: one with parents and one with school children. All data were audio-recorded, transcribed and analyzed iteratively using thematic analysis. Preliminary findings were then used to develop oral health promoting activities for children in the community. These activities were designed in collaboration with community workers. RESULTS: Three main themes emerged from the analysis: (1) a gap existed between oral health knowledge and oral health behaviors; (2) challenges for oral health promotion included attitudes and beliefs, access, and priorities; and (3) parents needed to be further integrated into health promotion strategies. Key outcomes included: (1) the development of Eagles & Otters, a game designed to increase children's oral health knowledge; (2) an activity sheet to promote child oral health behaviors in the home; and (3) increased capacity in oral health promotion in local youth, community research partners and the student researcher. CONCLUSIONS: The findings of this study highlight the importance of both local and broader systemic interventions to promote children's oral health. At the local level, child oral health and hygiene was promoted through the development of activities designed to increase children's oral health knowledge and behaviors both at school and in the home where parents were directly implicated. Systemic level interventions are needed to address factors related to the social determinants of health, including cultural traditions, economic security, food security, and housing status. These factors contribute to overall health and enable the necessary conditions to promote and sustain oral health.