Community perspectives on structural barriers to dying well at home in Canada.

OBJECTIVES: To analyze how structural determinants and barriers within social systems shape options for dying well at home in Canada, while also shaping preferences for dying at home. METHODS: To inform a descriptive thematic analysis, 24 Canadian stakeholders were interviewed about their views, experiences, and preferences about dying at home. Participants included compassionate community advocates, palliative care professionals, volunteers, bereaved family caregivers, residents of rural and remote regions, service providers working with structurally vulnerable populations, and members of francophone, immigrant, and 2SLGBTQ+ communities. RESULTS: Analysis of stakeholders' insights and experiences led to the conceptualization of several structural barriers to dying well at home: inaccessible public and community infrastructure and services, a structural gap in death literacy, social stigma and discrimination, and limited access to relational social capital. SIGNIFICANCE OF RESULTS: Aging in Canada, as elsewhere across the globe, has increased demand for palliative care and support, especially in the home. Support for people wishing to die at home is a key public health issue. However, while Canadian policy documents normalize dying in place as ideal, it is uncertain whether these fit with the real possibilities for people nearing the end of life. Our analysis extends existing research on health equity in palliative and end-of-life care beyond a focus on service provision. Results of this analysis identify the need to expand policymakers' structural imaginations about what it means to die well at home in Canada.

How initial policy responses to COVID-19 contributed to shaping dying at home preferences and care provision: key informant perspectives from Canada.

OBJECTIVES: In response to COVID-19's first wave, provincial governments rapidly implemented several public health directives, including isolation measures and care facility visitor restrictions, which profoundly affected healthcare delivery at the end of life and dying experiences and perceptions. The objective of this study was to identify implications of early policy changes for dying at home. METHODS: Analysis of interviews with 29 key informants with expertise in the policy and practice context of dying at home and care for those dying at home was conducted as part of a larger mixed-methods study on dying at home in Canada. RESULTS: Initial pandemic policy responses, especially visitor restrictions and limitations to home care services, shaped dying at home in relation to three themes: (1) increasing preferences and demand for, yet constrained system ability to support dying at home; (2) reinforcing and illuminating systemic reliance on and need for family/friend caregivers and community organizations, while constraining their abilities to help people die at home; and (3) illuminating challenges in developing and implementing policy changes during a pandemic, including equity-related implications. CONCLUSION: This study contributes to broader understanding of the multifaceted impacts of COVID-19 policy responses in various areas within Canadian healthcare systems. Implications for healthcare delivery and policy development include (1) recognizing the role of family/friend caregivers and community organizations in end-of-life care, (2) recognizing health inequities at the end of life, and (3) considering possible changes in future end-of-life preferences and public attitudes about dying at home and responsibility for end-of-life care.

'The beauty and the less beautiful': exploring the meanings of dying at 'home' among community and practitioner representatives and advocates across Canada.

Background: Significant structural and normative pressures privilege the ideal of dying at home in Canada. At the same time, the social complexities and meanings associated with dying in particular locations remain critically unexamined. Objective: The aim of this study is to explore how diverse community members, including health and social care stakeholders, talk about preferences for locations of dying, with a particular focus on meanings of dying at home. Design: Semi-structured virtual interviews were conducted with 24 community and practitioner representatives and advocates across Canada during the Covid-19 pandemic. This included compassionate community advocates, palliative care professionals and volunteers, bereaved carers, and members of queer, rural, and immigrant communities. Participants were asked about their own preferences for location of dying and elaborated on these aspects with regard to their client population or community group. Results: Our analysis illuminates how meanings of dying at home are connected to previous experiences and perceptions of institutional care. As such, participants' perspectives are often framed as a rejection of institutional care. Dying at home also often signals potential for preserving ontological security and relational connection in the face of life-threatening illness. However, participants' expertise simultaneously informs a sense that dying at home is often unattainable. At times, this awareness underpins interpretations of both preferences and choices as contingent on considerations of the nature and type of illness, concerns about impacts on families, and available resources. Conclusion: The ideal of dying at home is nuanced by identity, relational, and structural contexts. Knowledge from this study can inform realistic and practical person-centered planning across care settings. It can also help create more representative public policy and health system quality indicators regarding a 'good death' that do not rely on or perpetuate undeveloped and unrealistic assumptions about dying, home, and family care.

Communicating effectively with patients about vaccination: A systematic review of randomized controlled trials.

Background: Good communication between healthcare professionals and their patients is essential to enlighten the benefits and risks of vaccination. Despite the availability of effective vaccines, reluctance prevails, sometimes fuelled by sub-optimal communication leading to a lack of trust. An evaluation of the effectiveness of a communication strategy for which healthcare professionals are trained has yet to be carried out. Objective: Systematic review of studies with a randomized controlled trial (RCT) to define and evaluate the impact of healthcare professionals' communication on patients' vaccine adherence. Methods: We performed a structured search on Medline, Embase, CENTRAL, PsycINFO and CINAHL. The studies selected include those involving healthcare professionals authorized to administer vaccines according to Canadian guidelines. Primary outcomes include vaccination rate or vaccine hesitancy rate. Results: Nine articles were included. Five studies (n=5) reported intervention effectiveness according to vaccine adherence. The results are largely represented by parental vaccine hesitancy for human papillomavirus (HPV) or childhood vaccination, while three studies (n=3) target the general population. The risk of bias relative to the studies is either low (n=7) or of some concern (n=2). Conclusion: The effectiveness of communication varies according to the studies and knowledge acquired through training. Future studies will need to examine communication with healthcare professionals in order to establish a consensus on optimal and appropriate training.

Apoio social on-line: questões teóricas, metodológicas, benefícios sociais e recomendações / Online social support: Theoretical and methodological issues, social and health benefits, and recommendations

RESUMO As plataformas de apoio social on-line (fóruns de discussão, grupos no Facebook, salas de chat etc.) são cada vez mais utilizadas por pessoas com doenças crônicas e seus cuidadores, que desejam falar com pessoas com problemas semelhantes fora da sua rede tradicional. O objetivo desta revisão de literatura foi apresentar as intervenções de apoio social on-line descritas na literatura científica recente, para: 1) orientar as organizações que desejam desenvolver tal intervenção ou melhorar um programa existente; e 2) identificar caminhos de pesquisa para pesquisadores e recomendações para planejadores de saúde. Foram analisados 59 artigos científicos apresentando intervenções de apoio social on-line (2006-2016), usando uma grade enfatizando as concepções teóricas de apoio social, as plataformas web utilizadas e suas funcionalidades, o processo de design e avaliação das intervenções, os métodos de participação e animação estabelecidos pelas organizações, os impactos documentados das intervenções nas populações e, finalmente, as vias de pesquisa e as recomendações para os planejadores de saúde. Uma metodologia narrativa foi usada para destacar os desafios de desenvolvimento e implementação para apoiar nossas organizações parceiras no desenvolvimento ou melhoria de suas intervenções de apoio social on-line.

ABSTRACT Online social support platforms (discussion forums, Facebook groups, chat rooms, etc.) are increasingly used by people living with chronic diseases and their caregivers, who aspire to exchange with people living with similar problems outside their traditional network. The objective of this literature review is to present online social support interventions described in recent scientific literature, to: 1) guide organizations that want to develop such intervention or improve an existing program, and 2) identify research avenues for researchers and recommendations for health planners. Some 59 scientific articles presenting online social support interventions (2006-2016) were analyzed using a grid emphasizing the theoretical conceptions of social support, the web platforms used and their functionalities, the design process and evaluation of the interventions, the methods of participation and animation set up by the organizations, the documented impacts of the interventions on the populations, and finally the lines of research and the recommendations for the field planners. A narrative methodology was used to highlight development and implementation challenges to support our partner organizations in developing or improving their online social support interventions.

Where would Canadians prefer to die? Variation by situational severity, support for family obligations, and age in a national study.

BACKGROUND: Death at home has been identified as a key quality indicator for Canadian health care systems and is often assumed to reflect the wishes of the entire Canadian public. Although research in other countries has begun to question this assumption, there is a dearth of rigorous evidence of a national scope in Canada. This study addresses this gap and extends it by exploring three factors that moderate preferences for setting of death: situational severity (entailing both symptoms and supports), perceptions of family obligation, and respondent age. METHODS: Two thousand five hundred adult respondents from the general population were recruited using online panels between August 2019 and January 2020. The online survey included three vignettes, representing distinct dying scenarios which increased in severity based on symptom management alongside availability of formal and informal support. Following each vignette respondents rated their preference for each setting of death (home, acute/intensive care, palliative care unit, nursing home) for that scenario. They also provided sociodemographic information and completed a measure of beliefs about family obligations for end-of-life care. RESULTS: Home was the clearly preferred setting only for respondents in the mild severity scenario. As the dying scenario worsened, preferences fell for home death and increased for the other options, such that in the severe scenario, most respondents preferred a palliative care or hospice setting. This pattern was particularly distinct among respondents who also were less supportive of family obligation norms, and for adults 65 years of age and older. CONCLUSIONS: Home is not universally the preferred setting for dying. The public, especially older persons and those expressing lower expectations of families in general, express greater preference for palliative care settings in situations where they might have less family or formal supports accompanied by more severe and uncontrolled symptoms. Findings suggest a) the need for public policy and health system quality indicators to reflect the nuances of public preferences, b) the need for adequate investment in hospices and palliative care settings, and c) continuing efforts to ensure that home-based formal services are available to help people manage symptoms and meet their preferences for setting of death.

Framing Concerns about Body Image during Pre- and Post-Surgical Consultations for Head and Neck Cancer: A Qualitative Study of Patient-Physician Interactions.

Patients with head and neck cancer report high unmet psychosocial needs as they undergo lifesaving treatments that can significantly alter their appearance and cause functional impairments. This qualitative analysis of recordings of 88 pre- and post-surgical consultations involving 20 patients respond to the need for empirical studies of patient-provider conversations about body image concerns. It indicates that the emphasis on concerns about survival, cure, and physical recovery during clinical consultations may leave concerns about the impacts of surgery on appearance and function unexplored and even silenced. The interviews with patients and medical team members that complement the analysis of the recordings suggest that an emphasis on survival, cure, and physical recovery can respond to the need for reassurance in the context of serious illness. However, it can also be problematic as it contributes to the silencing of patients' concerns and to a potential lack of preparedness for the consequences of surgery. The results of this study can contribute to raising surgeons' awareness of the interactional dynamics during clinical consultations. Moreover, the results highlight the unique role that surgeons can play in validating patients' psychosocial concerns to support patients' rehabilitation in both physical and psychosocial domains.

The essential role of nurses in supporting physical examination in telemedicine: Insights from an interaction analysis of postsurgical consultations in orthopedics.

Telemedicine changes clinical practice and introduces new ways of distributing tasks between physicians and nurses, and particularly the delegation of sensory assessments during remote physical examinations. As nurses become more involved in patient assessment and clinical decision-making, the quality of physician-nurse collaboration has been recognized as essential to ensure quality patient care. However, few studies have examined physician-nurse interactions during teleconsultations. This article presents the results of an empirical study of nurse-physician communication during remote physical examinations. In partnership with a university-affiliated hospital in Ontario, Canada, we observed and recorded 10 simulated postsurgical consultations in orthopedics (involving a physician, a patient, and an on-site nurse) and conducted auto-confrontation interviews with physicians. The results of the thematic analysis of the interviews informed the selection of consultation sequences for in-depth interaction analysis. The findings demonstrate the nurse's essential role during remote physical examinations and reveal specific practices accomplished by the nurse to ensure successful nurse-physician collaboration. The interview data shows how physicians view the nurse's role and contributions. The findings contribute to our understanding of the collaborative nature of sensory assessments during remote physical examinations in telemedicine and can inform the development of training programs for professionals focusing on communication skills. Implications for clinical practice are discussed.

Perspectives of Nunavut patients and families on their cancer and end of life care experiences.

The present study arose from a recognition among service providers that Nunavut patients and families could be better supported during their care journeys by improved understanding of people's experiences of the health-care system. Using a summative approach to content analysis informed by the Piliriqatigiinniq Model for Community Health Research, we conducted in-depth interviews with 10 patients and family members living in Nunavut communities who experienced cancer or end of life care. Results included the following themes: difficulties associated with extensive medical travel; preference for care within the community and for family involvement in care; challenges with communication; challenges with culturally appropriate care; and the value of service providers with strong ties to the community. These themes emphasise the importance of health service capacity building in Nunavut with emphasis on Inuit language and cultural knowledge. They also underscore efforts to improve the quality and consistency of communication among health service providers working in both community and southern referral settings and between service providers and the patients and families they serve.

Cultural orientation and safety app for new and short-term health care providers in Nunavut.

SETTING: One of the greatest challenges of Nunavut's health care system is its reliance on short-term professionals, many of whom are not oriented to the Inuit historical/cultural context and the organization of health care in the territory. Our objective was to develop a free iOS/Android app to address this knowledge gap. INTERVENTION: We reviewed existing literature and interviewed key stakeholders to develop the content of the app covering the following: Inuit ways of communicating and expectations in the health care setting; Inuit history, settlement, and societal values (including a bibliography and a list of Inuktitut language phrases and resources); health care model (including referral pathways for tertiary care and mental health referrals); maps and community information; and useful information to prepare for your arrival. The app, HealthNU, was launched in September 2017. We targeted new and short-term health care providers in Nunavut, and the app has also been circulated and used by social workers, educators, and health care providers outside of the territory. OUTCOMES: By September 5, 2019, the app had been downloaded more than 700 times. To evaluate the app, we conducted interviews and a brief survey with key stakeholders (n = 18), who indicated that (1) the app was easy to use; (2) the content was highly relevant and would result in improved cultural competencies; and (3) they would recommend the app to colleagues and were already using it for recruitment/orientation. Challenges and limitations included: ensuring practitioners "completed" all modules while reading/using the app, and low response rate among providers who were solicited for feedback. IMPLICATIONS: HealthNU is an example of how technology solutions developed in partnership with community members, health care providers, researchers, and government can improve the quality of care for Nunavummiut. We are currently working with the Nunavut Department of Health to develop similar apps in other contexts.

Immediate post-treatment supportive care needs of patients newly diagnosed with head and neck cancer.

OBJECTIVE: This study aimed at identifying supportive care needs of patients with head and neck cancer (HNC-P) immediately post-treatment, finding early predictors of unmet needs, and contrasting how immediate post-treatment needs differed from needs in longer-term survivorship. METHODS: Prospective longitudinal study of 223 consecutive adults (313 approached; 72% participation) newly diagnosed with a first occurrence of primary HNC. Patients completed the Supportive Care Needs Survey-Short Form (SCNS), the Structured Clinical Interview for DSM-IV, and other outcomes. Medical chart reviews were conducted. RESULTS: A total of 68% of patients (n = 145/223) completed the SCNS. The multiple linear regression indicated that when controlled for medical variables, patients presented higher levels of unmet needs when they presented with higher level of anxiety upon HNC diagnosis (p = 0.03), higher neuroticism (p = 0.03), and more stressful life events in the year pre-diagnosis (p = 0.01). Patients immediately post-treatment had a wider variety of unmet needs compared with those in extended survivorship, with psychological unmet needs most prevalent at both time points. Immediately post-treatment, patients needed more support regarding pain (p = 0.04) and worries about treatment results (p = 0.05), whereas patients in longer-term survivorship needed more support regarding anxiety (p = 0.02), changes in sexual relationships (p = 0.04), and fear of death and dying (p = 0.001). CONCLUSION: This study identifies areas needing further development to improve quality of care for HNC-P in the immediate post-treatment period, as well as early determinants of unmet needs. HNC clinics may want to routinely screen for anxiety, neuroticism, and burden from other life events, to pro-actively address needs upon treatment completion and alleviate disease burden.

[Online social support as a mode of psychosocial intervention: A review of scientific literature, avenues for future research, and recommendations for practitioners]. / Le soutien social en ligne comme mode d'intervention psychosociale : revue de littérature, pistes de recherche et recommandations pour les intervenants.

OBJECTIVE: The goal of this review is to present online social support interventions described in recent scientific literature, in order to (i) guide organizations wishing to develop such an intervention or to improve an existing program, and (ii) to identify future research directions and recommendations for practitioners. METHODS AND RESULTS: 59 peer-reviewed articles presenting online social support interventions (2006-2016) were analyzed by using a thematic grid focusing on theoretical perspectives on social support, the online platforms used and their functionalities, the process of intervention development and evaluation, the modalities of participation and the facilitation methods, the documented impacts of interventions, and finally future research directions and recommendations for practitioners. A narrative methodology was used to identify challenges in intervention development and implementation, in order to provide guidance to organizations who want to develop or improve their online social support services. CONCLUSIONS: Several research directions and recommendations for the development of online social support interventions are suggested, including the need to develop theoretical models of online social support and enrich traditional models of social support, the need to understand the benefits associated with different levels of participation, the importance of needs assessment in the development of interventions, and the contribution of qualitative methods to the evaluation of interventions.

Recovering function and surviving treatments are primary motivators for health behavior change in patients with head and neck cancer: Qualitative focus group study.

OBJECTIVE: Against medical advice, head and neck cancer (HNC) patients have been shown to continue to smoke and misuse alcohol post-diagnosis and treatment. This study aimed to better understand the barriers to and facilitators of health behavior change (HBC) in HNC patients. METHOD: We conducted nine focus groups following a standard protocol. Eligible patients were diagnosed less than three years previously with a primary HNC and selected using maximum variability sampling (gender, age, cancer stage, smoking, and alcohol misuse). Thematic analysis was conducted using NVivo 10 software. RESULTS: Participants were mostly men (79%), 65 years of age (SD = 10.1), and married/common-law (52%, n = 15). Mean time from diagnosis was 19 months (SD = 12.3, range = 5.0-44.5), and most had advanced cancer (65.5%, n = 19). Participants provided a larger than anticipated definition of health behaviors, encompassing both traditional (smoking, drinking, diet, exercise, UV protection) and HNC-related (e.g., dental hygiene, skin care, speech exercises, using a PEG, gaining weight). The main emerging theme was patient engagement, that is, being proactive in rehabilitation, informed by the medical team, optimistic, flexible, and seeking support when needed. Patients were primarily motivated to stay proactive and engage in positive health behaviors in order to return to normal life and reclaim function, rather than to prevent a cancer recurrence. Barriers to patient engagement included emotional aspects (e.g., anxiety, depression, trauma, demoralization), symptoms (e.g., fatigue, pain), lack of information about HBC, and healthcare providers' authoritarian approach in counseling on HBC. We found some commonalities in barriers and facilitators according to behavior type (i.e., smoking/drinking/UV protection vs. diet/exercise). SIGNIFICANCE OF RESULTS: This study underlines the key challenges in addressing health behaviors in head and neck oncology, including treatment-related functional impairments, symptom burden, and the disease's emotional toll. This delicate context requires health promotion strategies involving close rehabilitative support from a multidisciplinary team attentive to the many struggles of patients both during treatments and in the longer-term recovery period. Health promotion in HNC should be integrated into routine clinical care and target both traditional and HNC-related behaviors, emphasizing emotional and functional rehabilitation as key components.

OA8†Caring for the family caregiver: working with volunteers to implement and improve a service to enable family caregivers to maintain their own wellbeing.

BACKGROUND: Family caregivers suffer physically, mentally, and spiritually. Community volunteers play an important role in supporting patients at the end of life or former caregivers in bereavement. However, there are no research reports of volunteer services focused on maintaining the wellbeing of end-of-life caregivers. AIM: To have volunteers, a hired volunteer coordinator, health care providers, and researchers implement and formatively evaluate a volunteer service to enable family caregivers to maintain their well being while providing care and subsequent bereavement. This presentation will focus on the volunteers' roles with the project as both agents of change to the service and as support for the caregivers. METHOD: A qualitative formative evaluation informed by Guba and Lincoln's Fourth Generation Evaluation (1989) participatory design was conducted. Data was collected through individual interviews, focus groups, participant observation during volunteer support meetings, and through volunteers' written reflections. RESULTS: Amongst the volunteers, volunteer coordinator, and principal investigator, there was mutual respect for and interest in learning about everyone's roles and experiences in the project. The experience was rewarding because they felt they helped the family caregiver and enjoyed developing and improving the service and working in a supportive team. Volunteers' challenges included being nervous for their first meeting with a caregiver, and frustration with some rules put in place to protect them (e.g. not helping the caregiver with direct care for the patient). CONCLUSION: Volunteers can be an effective part of the research team, while providing valuable support and encouragement for family caregivers to maintain their own wellbeing.