"We are not the person we will be when these things happen:" Reflections on personhood from an ethnography of neuropalliative care.

Neuropalliative care developed to address the needs of patients living with life-limiting neurologic disease. One critical consideration is that disease-related changes to cognition, communication, and function challenge illness experiences and care practices. We conducted an ethnography to understand neuropalliative care as a phenomenon; how it was experienced, provided, conceptualized. Personhood served as our conceptual framework; with its long philosophical history and important place in nursing theory, we examined the extent to which it captured neuropalliative experiences and concerns. Personhood contextualized complex losses, aligning the impact of functional and relational changes. Cognition, communication, and functional alterations stretched conceptions of personhood, insinuating it can be relational, fluid, adaptive. Although normative conceptions of personhood guided research and decision-making, ethical considerations suggested personhood could be transformed, remade. We consider the implications of our findings through three themes. First, we examine how literature on illness experience fails to integrate the realities of people living with and dying from neurologic disease; we counter this by interrogating the concept of experience. Second, we turn to Ricoeur's work on recognition to illuminate relational conceptions of personhood to inform care practices. Finally, we reflect on how personhood can bridge the gap left by functional changes, enhance relational engagement, and promote dignity at the end of life.

Introducing SAMMSA, a Five-Step Method for Producing 'Quality' Qualitative Analysis.

Qualitative health research is ever growing in sophistication and complexity. While much has been written about many components (e.g. sampling and methods) of qualitative design, qualitative analysis remains an area still needing advanced reflection. Qualitative analysis often is the most daunting and intimidating component of the qualitative research endeavor for both teachers and learners alike. Working collaboratively with research trainees, our team has developed SAMMSA (Summary & Analysis coding, Micro themes, Meso themes, Syntheses, and Analysis), a 5-step analytic process committed to both clarity of process and rich 'quality' qualitative analysis. With roots in hermeneutics and ethnography, SAMMSA is attentive to data holism and guards against the data fragmentation common in some versions of thematic analysis. This article walks the reader through SAMMSA's 5 steps using research data from a variety of studies to demonstrate our process. We have used SAMMSA with multiple qualitative methodologies. We invite readers to tailor SAMMSA to their own work and let us know about their processes and 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.

Memorial tattoos: Advancing continuing bonds theory.

A memorial tattoo is a tattoo that honors a person who has died. We aimed to understand how memorial tattoos could be an expression of a bereaved person's continuing relationship with the deceased person that the tattoo memorializes. We interviewed 41 people and used qualitative description grounded in a symbolic interactionist framework to analyze the transcripts. This research expands on continuing bonds theory by showing that memorial tattoos are an expression of the bond with the deceased as well as a way to communicate with others about their ongoing connection and to challenge stigma.

Grief literacy: A call to action for compassionate communities.

The compassionate communities movement challenges the notion that death and dying should be housed within clinical and institutional contexts, and works to normalize conversations about death and dying by promoting death literacy and dialogue in public spaces. Community-based practices and conversations about grief remain marginal in this agenda. We aimed to theorize how grief could be better conceptualized and operationalized within the compassionate communities movement. We develop the concept of Grief Literacy and present vignettes to illustrate a grief literate society. Grief literacy augments the concept of death literacy, thereby further enhancing the potential of the compassionate communities approach.

Anishnabeg children and youth's experiences and understandings of oral health in rural Quebec.

INTRODUCTION: Children's oral health is a prevalent health concern in Indigenous communities in Canada and globally. Compared to an early childhood caries prevalence rate of 57% in non-Indigenous Canadian school-age children, some Indigenous communities face rates exceeding 90%. Despite the high prevalence rates of caries and other oral health concerns in Indigenous children, qualitative research on oral health has focused on Indigenous adults. This study sought to uncover children and youths' oral health experiences and understandings in two Anishnabeg communities in Quebec. METHODS: A focused ethnography was conducted using participatory research principles, and included interviews with key informants, children, and youth, as well as participant observation of oral health activities. Analysis was iterative and concurrent with data collection. RESULTS: Themes include (1) children and youth primarily described oral health in relation to their teeth only; (2) children and youth have motivators for maintaining oral health, including consequences of poor oral health and its influence on self-presentation; (3) oral health is 'put on the side table', and not highly prioritized by children or adults; (4) children and youth recognize the people in their lives that influence their oral health; and (5) children and youth demonstrate agency in oral health matters. CONCLUSION: These results demonstrate the valuable perspectives that Anishnabeg children and youth have regarding their oral health, and are of value to other Indigenous communities that strive to address similar oral health concerns.

Considering medical assistance in dying for minors: the complexities of children's voices.

Medical assistance in dying (MAID) legislation in Canada followed much deliberation after the Supreme Court of Canada's ruling in Carter v. Canada Included in this deliberation was the Special Joint Committee on Physician Assisted Dying's recommendation to extend MAID legislation beyond the inclusion of adults to mature minors. Children's agency is a construct advanced within childhood studies literature which entails eliciting children's voices in order to recognise children as active participants in constructing their own childhoods. Using this framework, we consider the possible extension of MAID legislation to most minors. We highlight important questions regarding how insights from children's voices could be mobilised in the life or death context of MAID. We conclude that children's voices have the potential to help determine their eligibility for MAID; however, incorporating children's voices in the context of MAID requires careful consideration due to the complexity of voice.

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.

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.

Dentistry and nursing working together to improve oral health care in a long-term care facility.

Inadequate oral care in long-term care (LTC) facilities compromises the quality of life of residents. This study assessed oral care knowledge of, and challenges experienced by, nurses and allied nursing staff (ANS) in a LTC facility in Canada. Dentists and nursing staff used the findings to implement strategies for improved care. Using a sequential mixed method design, data on oral care knowledge and practices were collected using self-administered questionnaires (n = 114) and focused groups (n = 39). Data were analyzed using descriptive statistics and thematic analysis. While participants (>80%) felt knowledgeable and confident in providing oral care, they desired improved skills to overcome resistive behavior, communication, and wanted adapted oral care materials. Implemented strategies included skills-acquisition workshop, oral care posters, and oral health champion. Overall, our interprofessional collaboration increased awareness of the need for oral care training, and implemented strategies to help nursing staff overcome barriers in providing care.

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.

The conceptualization of childhood in North American pediatric dentistry texts: a discursive case study analysis.

BACKGROUND: In recent years, conceptions of childhood have been evolving towards an increased recognition of children as active agents, capable of participating in the determination of their wellbeing. In pediatric dentistry, the extent to which these conceptions are being discursively endorsed is not well known. AIM: The aim of this investigation was to examine the discursive construction of childhood in seminal North American pedagogical dentistry materials. DESIGN: We conducted a qualitative discourse analysis of a sample of prominent texts using a sociological discourse analysis approach. RESULTS: We analyzed the latest edition of Macdonald and Avery's textbook (Chapter: Non pharmacologic management of children's behaviors) and the clinical practice guidelines published by the American Academy of Pediatric Dentistry, AAPD (Behavior guidance for the pediatric dental patient). The analysis produced five salient discursive categories: socialization through behavior modification; development and behavior; paternalism; the utility of child-centered communication; and consequentialism. While there were instances of a child-centered focus in the texts, the main discourses were rooted in developmentalism and behaviorism. There was scant acknowledgment of the importance of children's agency or voice, which runs contrary to child-centered discourses and practices in related disciplines (e.g., pediatric medicine, nursing). CONCLUSION: Predominant discourses in pediatric dentistry suggest a paternalistic, behaviorist approach to the 'management' of children in the dental office, focused primarily on completing interventions. Priorities for the future development of pediatric dentistry are discussed, integrating more child-centered approaches.

Relational ethics of delirium care: Findings from a hospice ethnography.

Delirium, a common syndrome in terminally ill people, presents specific challenges to a good death in end-of-life care. This paper examines the relational engagement between hospice nurses and their patients in a context of end-of-life delirium. Ethnographic fieldwork spanning 15 months was conducted at a freestanding residential hospice in eastern Canada. A shared value system was apparent within the nursing community of hospice; patients' comfort and dignity were deemed most at stake and therefore commanded nurses' primary attention. This overarching commitment to comfort and dignity shaped all of nursing practice in this hospice, including practices related to end-of-life delirium. The findings of this study elaborate the ways in which hospice nurses interpreted and responded to the discomfort of their patients in delirium, as well as the efforts they made to understand their patients' subjective experiences and to connect with them in supportive ways. In addition to what is already known about clinical assessment and treatment of delirium in palliative care settings, the findings of this study offer points of reflection for nurses anywhere who are contending with the relational challenges that delirium presents in end-of-life care.

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.

The concept of 'vulnerability' in research ethics: an in-depth analysis of policies and guidelines.

BACKGROUND: The concept of vulnerability has held a central place in research ethics guidance since its introduction in the United States Belmont Report in 1979. It signals mindfulness for researchers and research ethics boards to the possibility that some participants may be at higher risk of harm or wrong. Despite its important intended purpose and widespread use, there is considerable disagreement in the scholarly literature about the meaning and delineation of vulnerability, stemming from a perceived lack of guidance within research ethics standards. The aim of this study was to assess the concept of vulnerability as it is employed in major national and international research ethics policies and guidelines. METHODS: We conducted an in-depth analysis of 11 (five national and six international) research ethics policies and guidelines, exploring their discussions of the definition, application, normative justification and implications of vulnerability. RESULTS: Few policies and guidelines explicitly defined vulnerability, instead relying on implicit assumptions and the delineation of vulnerable groups and sources of vulnerability. On the whole, we found considerable richness in the content on vulnerability across policies, but note that this relies heavily on the structure imposed on the data through our analysis. CONCLUSIONS: Our results underscore a need for policymakers to revisit the guidance on vulnerability in research ethics, and we propose that a process of stakeholder engagement would well-support this effort.

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.

The oral health of refugees and asylum seekers: a scoping review.

INTRODUCTION: Improving the oral health of refugees and asylum seekers is a global priority, yet little is known about the overall burden of oral diseases and their causes for this population. OBJECTIVE: To synthesize available evidence on the oral health of, and access to oral health care by this population. METHODS: Using a scoping review methodology, we retrieved 3321 records from eight databases and grey literature; 44 publications met the following inclusion criteria: empirical research focused on refugees and/or asylum seekers' oral health, published between 1990 and 2014 in English, French, Italian, Portuguese, or Spanish. Analysis included descriptive and thematic analysis, as well as critical appraisal using the Critical Appraisal Skills Programme (CASP) criteria for quantitative and qualitative studies. RESULTS: The majority of publications (86 %) were from industrialized countries, while the majority of refugees are resettled in developing countries. The most common study designs were quantitative (75 %). Overall, the majority of studies (76 %) were of good quality. Studies mainly explored oral health status, knowledge and practices; a minority (9 %) included interventions. The refugee populations in the studies showed higher burden of oral diseases and limited access to oral health care compared to even the least privileged populations in the host countries. Minimal strategies to improve oral health have been implemented; however, some have impressive outcomes. CONCLUSIONS: Oral health disparities for this population remain a major concern. More research is needed on refugees in developing countries, refugees residing in refugee camps, and interventions to bridge oral health disparities. This review has utility for policymakers, practitioners, researchers, and other stakeholders working to improve the oral health of this population.

Delirium as letting go: An ethnographic analysis of hospice care and family moral experience.

BACKGROUND: Delirium is extremely common in dying patients and appears to be a major threat to the family's moral experience of a good death in end-of-life care. AIM: To illustrate one of the ways in which hospice caregivers conceptualize end-of-life delirium and the significance of this conceptualization for the relationships that they form with patients' families in the hospice setting. DESIGN: Ethnography. SETTING/PARTICIPANTS: Ethnographic fieldwork was conducted at a nine-bed, freestanding residential hospice, located in a suburban community of Eastern Canada. Data collection methods included 15 months of participant observation, 28 semi-structured audio-recorded interviews with hospice caregivers, and document analysis. RESULTS: Hospice caregivers draw on a culturally established framework of normal dying to help families come to terms with clinical end-of-life phenomena, including delirium. By offering explanations about delirium as a natural feature of the dying process, hospice caregivers strive to protect for families the integrity of the good death ideal. CONCLUSION: Within hospice culture, there is usefulness to deemphasizing delirium as a pathological neuropsychiatric complication, in favor of acknowledging delirious changes as signs of normal dying. This has implications for how we understand the role of nurses and other caregivers with respect to delirium assessment and care, which to date has focused largely on practices of screening and management.

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.