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Persons with mental illnesses may experience stigma from their immediate family members in addition to other forms of stigma. Using semi-structured interviews, we investigated experiences of familial mental illness stigma among 15 people diagnosed with mental illnesses in a mid-sized city in Canada. We identified five themes that speak to participants' experiences of familial mental illness stigma and ways to reduce it. The themes include the following: diagnosis as a 'double-edged sword,' potential familial isolation, familial stigma as societal stigma localized, stories of acceptance, and confronting potential familial mental illness stigma. Participants' narratives indicate that familial mental illness stigma is rooted in the broader social or public stigma, which sees its way into familial relations as well. This stigma takes various forms, including relationship bias or unfair treatment, breakdown in romantic relationships, loss of status, verbal and emotional abuse, exclusion from decision-making, and alienation within their immediate and extended families. Familial mental illness stigma experiences negatively impact participant's psychological well-being and personal empowerment. However, participants also shared ways that family members create supportive environments or actively confront or prevent stigma. Overall, this study has contributed to knowledge on mental illness stigma, particularly familial mental illness stigma from the perspective of participants living with a mental illness in a high-income country. Suggestions for future research include a focus on strategies to prevent ongoing familial mental illness stigma and large-scale studies to explore familial mental illness stigma to understand why families might perpetrate stigma.

Background: Canadian 24-h movement guidelines recommend that adults achieve 150 min per week of moderate-to-vigorous physical activity (MVPA), 7-9 h of sleep per night and spend no more than 8-h per day sedentary to optimise health and wellbeing., Method: Using a cross-sectional survey of 131 family caregivers of adults with intellectual and developmental disabilities, we aimed to (a) determine whether adherence to these guidelines predicts mental wellbeing in family caregivers and (b) explore the relationship between movement behaviours of family caregivers and their loved ones., Results: While MVPA was found to weakly predict wellbeing, sleep and sedentary behaviour did not. The movement behaviours of the family caregivers were not closely related to that of their loved ones., Conclusions: Fostering physical activity is important to promote the wellbeing of adults with intellectual and developmental disabilities, as well as their family caregivers. Opportunities to be active together may be even more beneficial., (© 2024 The Author(s). Journal of Applied Research in Intellectual Disabilities published by John Wiley & Sons Ltd.)

Background: Cross-cultural psychosis research has mostly focused on outcomes, rather than patient and family experiences. Therefore, our aim was to examine differences in patients' and families' experiences of their treating teams in early intervention services for psychosis in Chennai, India [low- and middle-income country] and Montreal, Canada [high-income country]., Methods: Patients (165 in Chennai, 128 in Montreal) and their families (135 in Chennai, 110 in Montreal) completed Show me you care, a patient- and family-reported experience measure, after Months 3, 12, and 24 in treatment. The measure assesses the extent to which patients and families view treating teams as being supportive. A linear mixed model with longitudinal data from patient and family dyads was used to test the effect of site (Chennai, Montreal), stakeholder (patient, family), and time on Show me you care scores. This was followed by separate linear mixed effect models for patients and families with age and gender, as well as symptom severity and functioning as time-varying covariates., Results: As hypothesized, Chennai patients and families reported more supportive behaviours from their treating teams (β=4.04; β= 9, respectively) than did Montreal patients (Intercept =49.6) and families (Intercept=42.45). Higher symptom severity over follow-up was associated with patients reporting lower supportive behaviours from treating teams. Higher levels of positive symptoms (but lower levels of negative symptoms) over follow-up were associated with families reporting lower supportive behaviours from treating teams. There was no effect of time, age, gender and functioning., Conclusions: The levels to which treating teams are perceived as supportive may reflect culturally shaped attitudes (e.g., warmer attitudes towards healthcare providers in India vis-à-vis Canada) and actual differences in how supportive treating teams are, which too may be culturally shaped. Being expected to be more involved in treatment, Chennai families may receive more attention and support, which may further reinforce their involvement. Across contexts, those who improve over follow-up may see their treating teams more positively., Competing Interests: Declaration of Competing Interest The authors have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (Copyright © 2024 The Authors. Published by Elsevier B.V. All rights reserved.)

Critically ill patients in rural areas at times require an interhospital transfer from their local hospital to an urban tertiary care centre for advanced critical care services not available locally. Family members have described this transfer window as a communication blackout and one of the most stressful times of their relative's critical illness event., Objective: To explore what communication process would be most acceptable between family members and transfer team members (consisting of critical care nurses, paramedics, and physicians) during interhospital transfers of critically ill patients., Research Methodology: Using a qualitative descriptive approach of critical thematic analysis, data were collected in September and November 2022, from focus groups of five family members and four transfer team members who experienced this phenomenon., Setting: Rural Canada where speciality services such as interventional cardiology and neurosurgery are unavailable, and a tertiary care hospital is more than 160 km away., Findings: Within themes of unequal power relations and status-based hierarchies, family members described how communication during interhospital transfers supports connection and coping, challenges experienced in accessing information, an overwhelming unknown, and practical challenges of the transfer. Transfer team members described a context of power relations and status-based hierarchies in which themes of transfer team burden, role confusion or connection, protection and management of family members, and complexities of information sharing during interhospital transfers were identified., Conclusion: In critical illness, communication linkages are created between healthcare providers and family members but are broken during an interhospital transfer resulting in increased stress for family members. Acceptable communication elements described by transfer team members and family members may maintain these linkages during the transfer window., Implications for Clinical Practice: These findings provide the foundation for critical care nurses and their professional colleagues to take family care to the next level with an explicit communication strategy during interhospital transfers., Competing Interests: Declaration of competing interest The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (Copyright © 2024 The Author(s). Published by Elsevier Ltd.. All rights reserved.)

Significant barriers remain regarding the implementation of family-centred approaches in the domain of forensic psychiatry despite their effectiveness at increasing adherence to treatment, improving attendance to medical appointments, decreasing readmission rates and reducing episodes of relapse. We attribute these barriers to a fundamental gap in our understanding of the family function and its role within the forensic psychiatric system. Despite requesting to be included and considered as partners, some families feel excluded and sidelined, which causes distress, incomprehension and disengagement. We approached this tension at the discursive level through a critical ethnography of the Review Board and the work of Foucault on psychiatric power, which provided us with a unique opportunity to understand how the role of families are constructed and sustained in the Canadian forensic psychiatric system. To do so, we mobilized data stemming from ethnographic observations and documentary artifacts entitled 'reasons for disposition'. Data analysis allowed us to identify two discursive constructions of familial functions: (1) families as repositories of information and (2) families as supervisory agents. These results have implications for health care professionals and administrators in forensic psychiatry who are increasingly adhering to family-centred care models without questioning what such care or what such family engagement entails., Competing Interests: Declaration of conflicting interestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Purpose: Pediatric intensive care units (PICUs) worldwide restricted family presence in response to the COVID-19 pandemic. We aimed to explore the experiences and impact of restricted family presence policies on Canadian PICU clinicians., Methods: We conducted a qualitative study that followed an interpretive phenomenological design. Participants were PICU clinicians providing direct patient care in Canada during periods of COVID-19-related restricted family presence. We purposively sampled for maximum variation among survey participants who consented to be contacted for further research on the same topic. In-depth interviews were conducted remotely via telephone or video-call, audio-recorded, and transcribed. Interviews were inductively coded and underwent thematic analysis. Proposed themes were member-checked by interviewees., Results: Sixteen PICU clinicians completed interviews. Interviewees practiced across Canada, represented a range of disciplines (eight nurses, two physicians, two respiratory therapists, two child life specialists, two social workers) and years in profession (0-34 years). We identified four themes representing the most meaningful aspects of restricted family presence for participants: 1) balancing infection control and family presence; 2) feeling disempowered by hospital and policy-making hierarchies; 3) empathizing with family trauma; and 4) navigating threats to the therapeutic relationship., Conclusion: Pediatric intensive care unit clinicians were impacted by restricted family presence policies during the COVID-19 pandemic. These policies contributed to feelings of disempowerment and challenged clinicians' perceived ability to provide the best family-centred care possible. Frontline expertise should be incorporated into the design and implementation of policies to best support family-centred care in any context and minimize risks of moral distress for PICU clinicians., (© 2024. The Author(s).)

The roles of family care partners of older persons living in long-term care homes (LTCH) were severely disrupted during the coronavirus disease (COVID-19) pandemic. Our aim was to describe their experiences and to solicit their recommendations for supportive actions. We conducted a critical ethnography with 24 care partners who cared or had cared for an older person living in an LTCH in Québec during the COVID-19 pandemic. We collected data during interviews and used Spradley's method to analyse them. Care partners experienced a forced separation from the older persons they cared for, which resulted in significant distress. Care, including post-mortem care, was considered inadequate and sometimes even inhumane. Communication was inconsistent, and this variability was also noted in visitation rules. Care partners perceived LTCHs as a neglected community. Supportive actions were recommended. The results illustrated the essential contribution of care partners, and the supportive actions they recommended must be a catalyst for change toward more humane care in LTCH settings.

In 2020-2021, a qualitative study was undertaken using an interpretive description methodology to identify what triggers grief in the first 2 years following the death of a beloved family member, and to gain other helpful insights about grief triggers from bereaved Canadian adult volunteers. In that study, a purposive sampling method was used to select 10 bereaved Canadian adult volunteers for in-depth, semi-structured interviews. This paper reports on the humor findings, as revealed to be a particularly complex grief trigger for many participants, as well as a periodic way for most to manage or live with their grief. Participant quotes and an extended discussion are included to illustrate the importance of these humor findings in relation to grief, and to inform bereaved people, bereavement service providers, and the general public about both helpful aspects and some cautionary considerations about humor., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

This participatory action research (PAR) aimed to understand the health implications of guidelines impacting social isolation among frail community-dwelling older adults and their family and formal caregivers during the coronavirus disease (COVID-19) pandemic. Reflexive thematic analysis (RTA) of data collected from 10 policy/procedural documents revealed four themes: valuing principles, identifying problem(s), setting priorities, and making recommendations. Interviews with 31 participants from Peterborough, Ontario, also revealed four themes: sacrificing social health, diminishing physical health, draining mental health, and defining supports. Recommendations to decision makers were finalized at a knowledge exchange event involving participants and members of Age-friendly Peterborough. Key findings demonstrate the need for Canadian governments and health and social service agencies to enhance access to technology-based interventions, and educational and financial resources for caregivers. Meaningful communication and collaboration between older adults, caregivers, and decision makers are also needed to reduce the gap between policy and practice when addressing social isolation.

Background: Legalization of assisted dying is progressively expanding worldwide. In Canada, the Medical Assistance in Dying Act became law in 2016. As assisted dying regulations evolve worldwide, comprehending its subjective impact and broader consequences, especially on family members, becomes pivotal for shaping practice, policy, and training., Aim: The goal of this study is to understand the experience of family caregivers on the assisted dying procedure day., Design: Qualitative, thematic analysis, research using semi-structured interviews., Setting/participants: Family caregivers of patients who received assisted dying in two hospitals in Canada were recruited. Interviews were conducted at least 6 months after patient death. Conceptual saturation was achieved after analyzing 18 interviews., Results: While caregivers expressed gratitude for the availability of Medical Assistance in Dying, they also described the procedure day as potentially jarring and unsettling. We identified five aspects that shaped their experience: attuned support from the clinical team; preparation for clinical details; congruence between the setting and the importance of the event; active participation and ceremony; and pacing and timing of the procedure. Together, these aspects impacted the level of uneasiness felt by caregivers on the procedure day., Conclusions: This study emphasized the importance of a family-centered approach to delivering Medical Assistance in Dying. It underscored recognizing the needs of family caregivers during the procedure day and offering strategies to ease their experience. Healthcare providers in jurisdictions where assisted dying is legal or deliberated should consider the applicability of these findings to their unique context., Competing Interests: Declaration of conflicting interestsThe author(s) declare they have no potential conflicts of interest with respect to the research, authorship, and/or publication of this article other than authors’ roles in the medical assistance in dying programs at the University Health Network (SH, GR, ML) and Sunnybrook Health Sciences Centre (DS, SB, EIG).

Purpose: Cross-cultural psychosis research has typically focused on a limited number of outcomes (generally symptom-related). It is unknown if the purported superior outcomes for psychosis in some low- and middle-income countries extend to fundamental treatment processes like trust. Addressing this gap, we studied two similar first-episode psychosis programs in Montreal, Canada, and Chennai, India. We hypothesized higher trust in healthcare institutions and providers among patients and families in Chennai at baseline and over follow-up., Methods: Upon treatment entry and at months 3, 12 and 24, trust in healthcare providers was measured using the Wake Forest Trust scale and trust in the healthcare and mental healthcare systems using two single items. Nonparametric tests were performed to compare trust levels across sites and mixed-effects linear regression models to investigate predictors of trust in healthcare providers., Results: The study included 333 patients (Montreal = 165, Chennai = 168) and 324 family members (Montreal = 128, Chennai = 168). Across all timepoints, Chennai patients and families had higher trust in healthcare providers and the healthcare and mental healthcare systems. The effect of site on trust in healthcare providers was significant after controlling for sociodemographic characteristics known to impact trust. Patients' trust in doctors increased over follow-up., Conclusion: This study uniquely focuses on trust as an outcome in psychosis, via a comparative longitudinal analysis of different trust dimensions and predictors, across two geographical settings. The consistent differences in trust levels between sites may be attributable to local cultural values and institutional structures and processes and underpin cross-cultural variations in treatment engagement and outcomes., (© 2023. The Author(s), under exclusive licence to Springer-Verlag GmbH Germany.)

Objective: To explore the experiences of the Namaste Care intervention for persons with advanced dementia (ie, moderate and late-stage) in long-term care (LTC)., Design: A qualitative descriptive design was used. Staff Carers (eg, personal support worker, nurse, or activity aide) delivered Namaste Care with the support of volunteers in a small group. Activities provided during the Namaste Care sessions to enhance quality of life included massages, aromatherapy, music, and snacks/beverages., Setting and Participants: Family carers of residents with advanced dementia, LTC staff, administrators, and volunteers from 2 Canadian LTC homes, located in a midsize metropolitan area, were included., Methods: Experiences and acceptability of Namaste Care was assessed through semistructured interviews ranging from 30 to 60 minutes following the 6-month study duration period with family carers, LTC staff, administrators, and volunteers. Thematic analysis was used for interview transcripts., Results: A total of 16 family carers and 21 LTC staff, administrators, and volunteers participated in the study. Namaste Care was found to be acceptable and successful in enhancing the quality of life of residents due to collaborative efforts of all group of participants. Families, volunteers, and staff noted positive responses in residents, such as smiling and laughing. The program environment supported the development of relationships within the LTC community, which included families, residents, staff, and volunteers., Conclusions and Implications: Namaste Care was perceived by the LTC community as an acceptable intervention for persons with advanced dementia. It was perceived as offering multiple benefits for residents with advanced dementia such as improved communication and mood., (Copyright © 2023 The Authors. Published by Elsevier Inc. All rights reserved.)

Purpose: To collate a comprehensive repository of online resources for family caregivers of intensive care survivors to inform a recovery website and digital peer support programme., Materials and Methods: To identify resources, we conducted an environmental scan using processes recommended by the Canadian Agency for Drugs and Technologies in Health and guided by clinical experts, former patients, and family members. We searched internet sources, professional society websites, social media, and contacted our professional networks., Results: Through expert consultation we identified 16 information categories and found 301 online resources. Five categories with the most resources were: how to look after yourself/recognise anxiety or post-traumatic stress/getting mental health support (n = 63); information specific to conditions necessitating ICU admission (n = 49); multiple category resources (n = 46); symptoms of post-intensive care syndrome (n = 44); stories of lived experience (n = 23). Five categories with the least resources were physical, emotional and cognitive symptoms of post-intensive care syndrome-family (n = 1); interacting with primary care (n = 2); medical deterioration (how to recognise/what to do) (n = 2); driving and accessing the community (n = 3); end-of-life and bereavement (n = 5). Of these resources, we included 45 on our recovery website., Conclusion: This environmental scan identifies multiple resources addressing informational needs of family caregivers and highlights areas for resource development., Competing Interests: Declaration of Competing Interest None., (Copyright © 2023 The Authors. Published by Elsevier Inc. All rights reserved.)

Purpose: Resilience research in family caregiving in chronic neurological conditions is growing, but multiple sclerosis (MS) caregivers are noticeably absent from this body of work. MS caregivers represent a unique population due to the disease's early onset, prolonged life expectancy, and heterogeneity. As such, this study aimed to explore MS caregivers' conceptualizations of resilience, examine MS caregivers' experiences of resilience development, and determine which assets and resources influence resilience in this role., Methods: Twenty-four Canadian MS caregivers were recruited. Semi-structured in-depth interviews were conducted with questions derived from an ecological resilience framework. Data were analysed using reflexive thematic analysis., Results: Themes constructed a cyclical resilience model, beginning with encounters with hardship and extending to thriving adjustment. Subthemes included reports of additive challenges, impactful individual and community resources, and multi-level adaptive pathways. Within this cycle, the achievement of healthy adjustment exerted a positive feedback function and informed future responses to lifelong challenges., Conclusions: Despite the salience of resilience processes within caregiver testimonies, inadequate resources at societal levels were evident. These findings afford researchers and decision-makers relevant information for designing and implementing resilience-building interventions for MS caregivers that attend to contextual factors and current systemic support deficiencies.

In diaspora and transnational studies little is known about the experiences of transnational carer-employees (TCEs). TCEs provide unpaid/informal care across international borders to an adult family member, friend, or relative with disability and/or age-related needs, while also working in paid employment in the country of resettlement. The primary focus of this systematic review was to examine how cultural and historical elements of transnational caregiving influence the economic, social, and health/well-being of TCEs. This systematic review draws on quantitative and qualitative peer-reviewed literature on TCEs' experiences from Canada, the USA, or Australia between 1997 and 2017. In all, 16 articles that fulfilled the search inclusion criteria were selected. The articles were analyzed using content and thematic analysis. The review highlighted that transnational caregiving is a multi-dimensional phenomenon. There is a reciprocal relationship between adult children providing care to their parents and parents helping their children resettle in their new home. The findings suggest that TCEs provide practical, financial, and emotional care to their families abroad. To the best of our knowledge, this is the first comprehensive systematic review of the experiences of TCEs. Increasingly complex immigration experiences of transnational families require innovative policy responses from a transnational and intersectionality lens. Immigrants need support to maintain solid transnational networks and simultaneously adapt to the country of resettlement. Employers can use the findings to support TCEs in balancing unpaid care across vast geographical distances while sustaining their economic and social well-being., (© 2022. The Author(s).)

Family caregiving is a public health issue because of caregivers' significant contribution to the health and social care systems, as well as the substantial impact that giving and receiving care has on the health and quality of life of care receivers and caregivers. While there have been many studies that associate caregivers' care work, financial difficulty, navigation, and other caregiving factors with family caregivers' psychological distress, we were interested not only in the factors related to family caregiver anxiety but also in hypothesizing how those effects occur. In this study, we used Andrew Hayes' PROCESS moderation analysis to explore the link between caregiver frailty, weekly care hours, and perceptions of financial difficulty, social support, and anxiety. In this analysis, we included 474 caregivers with relatively complete data on all of the variables. In regression analysis after controlling for gender and age, social loneliness (β = 0.245), frailty (β = 0.199), financial difficulty (β = 0.196), care time (β = 0.143), and navigation confidence (β = 0.131) were all significant. We then used PROCESS Model 6 to determine the significance of the direct, indirect, and total effects through the serial mediation model. The model pathway from frailty to care time to financial difficulty to social loneliness to anxiety was significant. The proportions of family caregivers who were moderately frail, anxious, and experiencing social loneliness after eighteen months of the COVID-19 pandemic found in this survey should be of concern to policymakers and healthcare providers.

Rationale: Restricted visitation policies during the first wave of the coronavirus disease (COVID-19) pandemic have had a major impact on the ways that intensive care unit (ICU) clinicians communicated with patients and their families, requiring the use of innovative strategies to adapt to new communication structures. Objectives: The purpose of this study is to describe the impact of restricted visitation policies on communication and to identify strategies that could be used to facilitate better communication within Canadian ICUs from the perspective of those affected. Methods: We conducted semistructured individual interviews with critically ill patients, their families, and clinicians from 23 Canadian ICUs during the first wave of the COVID-19 pandemic between July 2020 and October 2020. We used inductive thematic analysis to identify relevant themes and subthemes. Results: Forty-one interviews were conducted with 3 patients, 8 family members, 17 nurses, and 13 physicians. Five themes were identified from the analysis: 1 ) patient and family psychosocial and information needs; 2 ) communication tools; 3 ) quality of communication; 4 ) changing roles and responsibilities of patients and nurses/physicians; and 5 ) facilitators or barriers to implementing alternative communication. Participants identified strategies to leverage new videoconference technology and communication structures to preserve the quality of communication. Conclusions: Our study identified challenges and opportunities related to communication between critically ill patients, families, and ICU clinicians due to the restricted hospital visitation policies during the first wave of the COVID-19 pandemic. The use of videoconference technology and changes to communication structure were important strategies to facilitate effective communication within the ICU.

Aim: To use positive deviance to identify actionable processes of care that may improve outcomes and experience from the perspectives of prolonged intensive care unit (ICU) stay survivors and family members., Design: Prospective qualitative interview study in two geographically distant settings: Canada (2018/19) and the United Kingdom (2019/20)., Methods: Patient and family participant inclusion criteria comprised: aged over 18 years, ICU stay in last 2 years of over 7 days, able to recall ICU stay and provided informed consent. We conducted semi-structured in-person or telephone interviews. Data were analysed using a positive deviance approach., Results: We recruited 29 participants (15 Canadian; 14 UK). Of these, 11 were survivors of prolonged ICU stay and 18 family members. We identified 22 actionable processes (16 common to Canadian and UK participants, 4 Canadian only and 2 UK only). We grouped processes under three themes: physical and functional recovery (nine processes), patient psychological well-being (seven processes) and family relations (six processes). Most commonly identified physical/functional processes were regular physiotherapy, and fundamental hygiene and elimination care. For patient psychological well-being: normalizing the environment and routines, and alleviating boredom and loneliness. For family relations: proactive communication, flexible family visiting and presence with facilities for family. Our positive deviance analysis approach revealed that incorporation of these actionable processes into clinical practice was the exception as opposed to the norm perceived driven by individual acts of kindness and empathy as opposed to standardized processes., Conclusion: Actionable processes of care important to prolonged ICU stay survivors and family members differ from those frequently used in ICU quality improvement (QI) tools., Impact: Our study emphasizes the need to develop QI tools that standardize delivery of actionable processes important to patients and families experiencing a prolonged ICU stay. As the largest healthcare professional group, nurses can play an essential role in leading this., (wileyonlinelibrary.com/journal/jan.)

The psychological well-being of family caregivers is influenced by their relations with care receivers, and whether they have choice in becoming a caregiver. Limited study has explored the interaction effect of caregiver-receiver relations and caregiving choice on caregivers' psychological well-being. This study examines whether the caregiver's perceived choice moderates the association between caregiver-receiver relation and psychological well-being. Using population-based data from the 2012 Canada General Social Survey - Caregiving and Care Receiving (n = 5,285), this study applies regression and ANCOVA analyses. Results show family caregivers for spouses and children report significantly worse psychological well-being, whereas having choice to become a caregiver is associated with better psychological well-being. There was a significant moderation effect of caregiving choice on the association between caregiver-receiver relation and psychological well-being. Findings suggest that more services should be targeted for family caregivers without choice for caregiving as well as those who provide care for their children.

Introduction: In a patient-centred and family-centred approach to organ donation, compassion is paramount. Recent guidelines have called for more research, interventions and approaches aimed at improving and supporting the families of critically ill patients. The objective of this study is to help translate patient-centred and family-centred care into practice in deceased organ donation., Methods and Analysis: This will be a national, qualitative study of family members of deceased organ donors in Canada. We will include family members who had been approached regarding an organ donation decision, including those who agreed and declined, at least 2 months and no later than 3 years after the patients' death. Data collection and analysis is ongoing and will continue until September 2020 to include approximately 250 participants. Family members will be identified and recruited from provincial organ donation organisation databases. Four experienced qualitative researchers will conduct telephone interviews in English or French with audio-recording for subsequent transcription. The research team will develop a codebook iteratively through this process using inductive methods, thus generating themes directly from the dataset., Ethics and Dissemination: Local research ethics boards (REB) at all participating sites across Canada have approved this protocol. The main REB involved is the Ottawa Health Science Network REB. Data collection began in August 2018. Publication of results is anticipated in 2021. Study findings will help improve healthcare provider competency in caring for potential organ donors and their families and improve organ donation consent rates. Findings will also help with the development of educational materials for a competency-based curriculum for critical care residents., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2020. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Objectives: Views on who bears how much responsibility for supporting individuals with mental health problems may vary across stakeholders (patients, families, clinicians) and cultures. Perceptions about responsibility may influence the extent to which stakeholders get involved in treatment. Our objective was to report on the development, psychometric properties and usability of a first-ever tool of this construct., Methods: We created a visual weighting disk called 'ShareDisk', measuring perceived extent of responsibility for supporting persons with mental health problems. It was administered (twice, 2 weeks apart) to patients, family members and clinicians in Chennai, India ( N  = 30, 30 and 15, respectively) and Montreal, Canada ( N  = 30, 32 and 15, respectively). Feedback regarding its usability was also collected., Results: The English, French and Tamil versions of the ShareDisk demonstrated high test-retest reliability ( r s = .69-.98) and were deemed easy to understand and use., Conclusion: The ShareDisk is a promising measure of a hitherto unmeasured construct that is easily deployable in settings varying in language and literacy levels. Its clinical utility lies in clarifying stakeholder roles. It can help researchers investigate how stakeholders' roles are perceived and how these perceptions may be shaped by and shape the organization and experience of healthcare across settings.

Over the past three decades, there has been growing attention to sexual expression in continuing care homes. However, resident perspectives continue to be underrepresented, particularly in the Canadian context. In this article, we share findings from a qualitative, exploratory study looking at the experiences of residents and family members in Alberta, Canada. As continuing care demographics and social norms about sexuality shift, it is increasingly important to understand these perspectives. We asked participants about how they define sexual expression, its place in continuing care, their experiences with/thoughts about sexual expression in care homes, and suggestions for how to improve this aspect of resident life. We heard diverse accounts of what sexual expression can look like in continuing care homes, the importance of resident autonomy, how privacy matters, complex communication dynamics, and challenges with distinguishing between appropriate and inappropriate expressions. These findings foreground the voices of residents and family members and highlight key areas of opportunity for policy and practice change., (Copyright © 2020 The Authors. Published by Elsevier Inc. All rights reserved.)

Background: Although patient-centred care has become increasingly important across all medical specialties, when it comes to end of life care, research has shown that treatments ordered are not often concordant with people's expressed preferences. Patient and family engagement in Advance Care Planning (ACP) in the primary care setting could improve the concordance between patients' wishes and the healthcare received when patients cannot speak for themselves. The aim of this study was to better understand the barriers faced by older patients regarding talking to their family members and family physicians about ACP., Methods: In this multi-site cross-sectional study, three free text questions regarding reasons patients found it difficult to discuss ACP with their families or their family physicians were part of a self-administered questionnaire about patients' knowledge of and engagement in ACP. The questionnaire, which included closed ended questions followed by three probing open ended questions, was distributed in 20 family practices across 3 provinces in Canada. The free text responses were analyzed using thematic analysis and form the basis of this paper., Results: One hundred two participants provided an analyzable response to the survey when asked why they haven't talked to someone about ACP. Two hundred fifty-four answered the question about talking to their physician and 340 answered the question about talking to family members. Eight distinct themes emerged from the free text response analysis: 1. They were too young for ACP; 2. The topic is too emotional; 3. The Medical Doctor (MD) should be responsible for bringing up ACP 4. A fear of negatively impacting the patient-physician relationship; 5. Not enough time in appointments; 6. Concern about family dynamics; 7. It's not a priority; and 8. A lack of knowledge about ACP., Conclusions: Patients in our sample described many barriers to ACP discussions, including concerns about the effect these discussions may have on relationships with both family members and family physicians, and issues relating to patients' knowledge and interpretation of the importance, responsibility for, or relevance of ACP itself. Family physicians may be uniquely placed to leverage the longitudinal, person- centred relationship they have with patients to mitigate some of these barriers.

Background: Delirium is very common in critically ill patients admitted to the intensive care unit (ICU) and results in negative long-term outcomes. Family members are also at risk of long-term complications, including depression and anxiety. Family members are frequently at the bedside and want to be engaged; they know the patient best and may notice subtle changes prior to the care team. By engaging family members in delirium care, we may be able to improve both patient and family outcomes by identifying delirium sooner and capacitating family members in care., Methods: The primary aim of this study is to determine the effect of family-administered delirium prevention, detection, and management in critically ill patients on family member symptoms of depression and anxiety, compared to usual care. One-hundred and ninety-eight patient-family dyads will be recruited from four medical-surgical ICUs in Calgary, Canada. Dyads will be randomized 1:1 to the intervention or control group. The intervention consists of family-partnered delirium prevention, detection, and management, while the control group will receive usual care. Delirium, depression, and anxiety will be measured using validated tools, and participants will be followed for 1- and 3-months post-ICU discharge. All analyses will be intention-to-treat and adjusted for pre-identified covariates. Ethical approval has been granted by the University of Calgary Conjoint Health Research Ethics Board (REB19-1000) and the trial registered. The protocol adheres to the Standard Protocol Items: Recommendations for Interventional Trials (SPIRIT) checklist., Discussion: Critically ill patients are frequently unable to participate in their own care, and partnering with their family members is particularly important for improving experiences and outcomes of care for both patients and families., Trial Registration: Registered September 23, 2019 on Clinicaltrials.gov NCT04099472.

Background: Caregivers contribute substantially to patients' management of and recovery from cardiovascular disease (CVD). Yet, the distress that many caregivers experience in this role continues to be underresearched and their needs undersupported., Purpose: Situated within a patient engagement framework and adapted from experience-based co-design guidelines, the process of developing a comprehensive caregiver support resource with joint contributions from caregivers and healthcare providers representing multiple disciplines is described. A discussion of the challenges encountered during the development of the caregiver support resource and recommendations for future sites embarking on co-design work are noted., Conclusion: Developing feasible and relevant approaches, such as informational support instruments, to meet the needs of the growing population of CVD caregivers is essential., Clinical Implications: Although co-design processes are often complex, take more time and resources to implement, and involve multiple levels of an organization and community than traditional practices, these efforts may help to improve healthcare quality to stem the burden of CVD.

Problem/background: Limited empirical data are available on the experiences of women who have been a gestational surrogate., Question: What are the experiences of gestational surrogates along the surrogacy pathway?, Methods: An anonymous study-specific cross-sectional survey was used to evaluate participants' experience of being a surrogate. A total of 184 Canadian women who were recruited from Canadian surrogacy agencies and the Internet completed the online survey; 9446 words were collected from 110 participants who entered comments to one or more questions. The qualitative data were analyzed through thematic analysis., Findings: Seven main themes, and eighteen interrelated sub-themes grouped under the pre-, during, and post-surrogacy stages were identified. Many surrogates viewed surrogacy as a positive experience and as something meaningful and impactful to other people's lives. Most surrogates had harmonious relationships with their intended parents and maintained on-going contact with the surrogacy family post birth., Discussion: Surrogacy involves deliberate efforts to establish a trustful surrogate-parent partnership through relationship building, boundary negotiation, and management of expectations. The compatibility between surrogate and intended parents, regarding aspects such as communication and pregnancy management styles, was an important contributing factor to a positive experience., Conclusion: Our findings provide a deeper understanding of participants' reasons for and motivation to be a surrogate, the relationship dynamics with their intended parents and the gestated fetus during surrogacy, and their satisfaction on personal and relationship levels post surrogacy. The findings would be useful to mental health professionals in preparing new surrogates for the potential challenges along the surrogacy pathway., (Copyright © 2019 Australian College of Midwives. Published by Elsevier Ltd. All rights reserved.)

Spiritual care has been recognized as important to family members of critically ill patients, although it is often not integrated within clinical practice. We conducted focus groups and interviews with family members, spiritual health practitioners, and clinicians who work in the intensive care unit (ICU) to explore their experiences of working with family members experiencing spiritual distress in this setting. Challenges and factors that enable identification and support for spiritual distress were identified, as well as suggestions for improvement.

Interpretations of family carer empowerment in much nursing research, and in home-care practice and policy, rarely attend explicitly to families' choice or control about the nature, extent or length of their involvement, or control over the impact on their own health. In this article, structural empowerment is used as an analytic lens to examine home-care nurses' interactions with families in one Western Canadian region. Data were collected from 75 hrs of fieldwork in 59 interactions (18 nurses visiting 16 families) and interviews with 12 nurses and 11 family carers. Generally, nurses prioritized client empowerment, and their practice with families appeared oriented to supporting their role and needs as carers (i.e. rather than as unique individuals beyond the caring role), and reinforcing the caring role through validation and recognition. Although families generally expressed appreciation for these interactions, a structural empowerment lens illustrates how the broad context of home care shapes the interpretation and practice of empowerment in ways that can, paradoxically, be disempowering for families. Opportunities to effectively support family choice and control when a client is being cared for at home are discussed., (© 2019 John Wiley & Sons Ltd.)

Background: Decision-making in pediatric end-stage renal disease (ESRD) is a complex process for patients, families, and physicians. We evaluated the factors influencing the timing of initiation of renal replacement therapy (RRT) and choice of modality in children with ESRD., Methods: We retrospectively reviewed the RRT decision-making process for all children up to 19 years of age with ESRD, who underwent RRT over an 11-year period (2004 to 2014), at a Canadian pediatric tertiary care center. RRT modalities included peritoneal dialysis (PD), hemodialysis (HD), pre-emptive kidney transplant (PKT), and continuous renal replacement therapy (CRRT)., Results: Ninety-two patients progressed to ESRD. RRT was started electively for 58 patients, and urgently for 34 patients. For elective patients, modalities included PD (34%), HD (19%), and PKT (47%). The glomerular filtration rate at initiation of RRT was higher in patients who underwent PKT as opposed to dialysis (11.7 vs. 9.1 ml/min/1.73m 2 ). Medical and quality of life factors, including fatigue and poor concentration, influenced the timing of initiation of elective RRT. Medical factors were primarily important in urgent RRT, including oligoanuria and metabolic disturbances. Medical factors, patient/family preference, and contextual factors such as location of residence influenced choice of modality., Conclusions: Our study found that the decision-making process in ESRD is multifactorial and involves not only medical factors, but also assessment of social factors, quality of life, and patient/family preference. Bettering our understanding of this decision-making process will positively impact patients and families through more informed decision-making.

Introduction: Family based interventions are the standard for pediatric weight management programs (PWMPs), yet the details of how to involve additional family members, when youth are part of blended families (i.e., step families) or reside in multiple households is not well understood. The objective of this study is to describe how providers involve blended families and multiple households in PWMPs., Method: A cross-sectional exploratory survey was conducted of providers at PWMPs in the United States and Canada. The survey questions included had both multiple choice and open-ended responses. Univariate analyses were conducted., Results: 71 providers participated, representing 47 centers/clinics. The majority (96%) reported assessing multiple households, most often during the medical history. Providers reported including the primary caretakers at all known residences (59%), but not immediate family members beyond the primary caretakers. Providers reported adapting dietary (88%) and physical activity (77%) recommendations to accommodate multiple households. The most frequent adaptations included the goals at each family/household, adjustments on a per family basis or based on family resources, and making materials available to all family members. The most frequent challenges in extending treatment plans to multiple households included one caretaker/household not willing to participate or being present at visits, and inconsistency between households. Despite providers reporting that they assess multiple households, they did not have a formal interview template or form to use in assessments (27%)., Discussion: Providers recognize the challenges and complexity that blended families present with in obesity treatment. Further research is need to increase provider assessment and involvement of blended families and the extension of goals and treatment plans to multiple homes. (PsycINFO Database Record (c) 2019 APA, all rights reserved).

Background: In Canada, 8.1 million people informally provide care without payment, primarily to family members; 6.1 million of them are employed at a full-time or part-time job. Digital technologies, such as internet-based tools, can provide informal caregivers' access to information and support. This scoping review aimed to explore the role of internet-based digital tools in reducing social isolation and addressing support needs among informal caregivers., Methods: A systematic search for relevant peer-reviewed literature was conducted of four electronic databases, guided by Arksey and O'Malley's framework. An extensive search for relevant grey literature was also conducted., Results: The screening process yielded twenty-three papers. The following themes were generated from the reviewed studies: searching for and receiving support; gaining a sense of social inclusion and belonging; and benefits and challenges of web-based support. The studies noted that, to connect with peers and obtain social support, informal caregivers often turn to online platforms. By engaging with peers in online communities, these caregivers reported regaining a sense of social inclusion and belonging., Conclusions: The findings suggest that internet-based digital tools can be a cost-effective and convenient way to develop programs that help unpaid caregivers form communities, gain support, and access resources. Service providers can leverage digital tools to deliver support to caregivers within online communities.

Background: Cancer is a family disease, affecting the individual patient and the family. For Chinese patients and their families in Canada, adjusting to cancer may be particularly distressing when culture and language are not congruent with the mainstream model of care delivery., Objective: In view of the limited research on the cancer experience of Chinese families, this study aims to examine the interrelatedness of patients and family caregivers' distress among a Chinese-speaking cancer population in Canada., Methods: Semi-structured interviews were conducted with a purposive sample of 10 Chinese-speaking cancer patients and 6 family caregivers. Qualitative analysis of the interview data was conducted to construct cross-cutting themes regarding the experiences of distress after a cancer diagnosis., Results: Four overarching themes emerged from the analysis: (1) misconception about cancer, (2) tensions in disclosure, (3) patient and family caregiver distress, and (4) concealing emotion in patient and family caregiver. Notably, the interrelatedness of patients and family caregivers' distress was highlighted, as patients and family caregivers both sought to regulate their own emotions to protect one another's mental well-being., Conclusion: The study provides insights into the distress of living with cancer and the impact on family relationships. Understanding the patients and family members' cultural and social contexts also provides the foundation for patient- and family-centered care., Implications for Practice: Healthcare professionals can provide culturally appropriate care by recognizing the needs, values, and beliefs of cancer patients and their families. Furthermore, the patient-family-caregiver dyad needs to be considered as the unit of care.

Objective: This study sought to examine the association between early life stressors and adolescent headache in the Canadian population, and the potential mediating influence of symptoms of depression and anxiety., Background: Early life stress or adverse childhood experiences have a well-documented association with migraine and headache in adulthood, as do symptoms of depression and anxiety. However, there is limited evidence examining the relationship between early life environmental stressors and adolescent headache, and a lack of longitudinal research. Family-level factors including parenting behaviors and parental influences such as maternal distress have been implicated in pediatric chronic pain., Methods: This study used data from 2313 respondents of the National Longitudinal Survey of Children and Youth, followed prospectively from age 0 to 1 years at baseline (1994/1995) until age 14 to 15 years (2008/2009). The relationships between 4 measures of early life family level stressors, and outcomes of incident health professional-diagnosed migraine and self-reported, unclassified frequent headache (>1 per week) were examined. We conducted a series of mediation analyses of the indirect effect (IE) of family-level stressors on headache outcomes through symptoms of depression and anxiety in late childhood. The IE and 95% bias-corrected confidence interval (CI BC ) were estimated using maximum likelihood logistic regression methods (log odds scale)., Results: The proportion of respondents with incident migraine and frequent headache was 3.1% and 11.1%, respectively. There were no direct associations between distal early life family-level factors and adolescent headache. Symptoms of depression- and anxiety-mediated relationships between family dysfunction (IE 0.0181, 95% CI BC 0.0001-0.0570), punitive parenting (IE 0.0241, 95% CI BC 0.0015-0.0633), parental depressive symptomatology (IE 0.0416, 95% CI BC 0.0017-0.0861), and incident migraine but not frequent headache. Indirectly, presence of family dysfunction, punitive parenting, and higher parental depressive symptomatology in early life were associated with a greater likelihood of migraine in adolescence, through greater symptoms of depression and anxiety in late childhood., Conclusions: Findings provide support for the influence of early life family-level factors on prospective risk of developing migraine, through symptoms of depression and anxiety. Addressing family dynamics in clinical practice may reduce unnecessary stress-related burdens on children and adolescents, which could lead to improvements in their somatic complaints., (© 2019 American Headache Society.)

Background: Current guidelines support family members' participation in care, but little is known regarding their potential contribution to pain assessment using validated behavioral pain scales., Aims: This study aimed to describe family members' observations of pain behaviors with the Critical-Care Pain Observation Tool and their evaluation of the tool and its use, and to understand their experience and perceptions of their potential role in pain management in the intensive care unit., Design: A mixed methods cross-sectional explanatory design was used., Setting: A medical-surgical intensive care unit in Canada., Participants/subjects: Family members were eligible if they had a loved one admitted in the intensive care unit who was unable to self-report., Methods: Family members identified pain behaviors using the Critical-Care Pain Observation Tool after a brief training, completed a self-administered questionnaire, and participated in a follow-up individual interview regarding their experience and perceived potential role in pain management when their loved one is unable to self-report., Results: Ten family members participated. A 15-minute training appeared sufficient for family members to be comfortable with observing pain behaviors included in the Critical-Care Pain Observation Tool. The tool allowed them to confirm their observations of pain behaviors, to focus more on the patient, and to advocate for better pain management., Conclusions: Future research is needed to explore the views of more family members and to compare their Critical-Care Pain Observation Tool scores to the ones of nurses' for interrater reliability testing., (Copyright © 2019 American Society for Pain Management Nursing. Published by Elsevier Inc. All rights reserved.)

Objectives: To understand how bereaved spousal caregivers of persons with dementia perceive and respond to changes over the course of their spouse's disease, from diagnosis into bereavement., Design: Qualitative interview study with convenience sampling and thematic analysis approach., Participants: Participants included eight women and two men (n=10) who had been spousal caregivers for a person with dementia prior to his/her death. Participants were older adults who self-reported good health and were bereaved longer than a year., Setting: Data collected in a small Canadian prairie city between fall 2014 and winter 2015., Findings: Two overarching themes were developed as important components of participants' caregiving journey: emotional reactions to change and variation in social connectedness throughout the caregiving and bereavement journey. Four key sub-themes developed through the analysis of emotional reactions to events: memorable grief overshadows persistent grief, a progressive feeling of hopelessness and overwhelmed, relief is common but hidden and gratitude is a milestone in a constructive bereavement. Three key variations of social connectedness throughout the caregiving and bereavement journey were developed: the importance of social inclusion throughout a caregiving and bereavement journey, the repeated loss of companionship and withdrawing from social interactions is contingent on needs., Conclusions: The findings suggest that emotional changes throughout caregiving and bereavement are not linear. The need for support from family, friends and new social supports is influential in enabling the caregiver to move forward during caregiving and bereavement., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2019. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Background and Objectives: Although it is generally acknowledged that the changing behaviors of some people living with dementia can be emotionally exhausting for family members, there has been little research on how carers actually interpret and manage their emotional responses when interacting with persons with dementia in context and over time. Applying the concept of emotion work, this analysis examines when and where carers feel they are responding "the right way" to their kin and when and where they resist normative emotions around family care., Research Design and Methods: Semi-structured qualitative interviews (N = 20) and diaries (N = 11) were conducted with, and collected from, family carers in Manitoba, Canada to explore how they negotiate their emotions and emotional displays when caring for a family member whose behaviors are changing., Results: Carers expressed feelings of frustration, anger, and resentment and identified putting on a positive attitude, putting the person with dementia first, protecting the person with dementia, and avoiding conflict and arguing as the "right way" to respond to these feelings. They identified challenges responding the "right way," however, in relation to household chores, and situations that also involved isolation, fear, verbal aggression, and fatigue., Discussion and Implications: Programs and policies must recognize the complex emotion work of family carers. There is a need for more nuanced education materials, support with household tasks, inclusion of carers' emotional needs in transition planning, and support for carers to exit the caring role when necessary., (© The Author(s) 2019. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.)

Background: Families' experiences of assisted dying are under-investigated and families are rarely considered in clinical guidelines concerning assisted dying., Aim: To systematically review family experiences of assisted dying., Design: A systematic literature review using thematic synthesis., Data Sources: MEDLINE, Embase, CINAHL, AMED (Allied and Complementary Medicine) and PsycINFO databases (January 1992 to February 2019). Studies investigating families' experiences on the practice of legalised assisted dying were included. We excluded studies prior to legalisation within the jurisdiction, secondary data analysis and opinion papers., Results: Nineteen articles met the inclusion criteria. Publications were derived from four countries: The Netherlands, United States (Oregon, Washington and Vermont), Canada and Switzerland. Dutch studies predominately investigated family involvement in euthanasia, while Swiss and American studies only reported on assisted suicide. Eleven studies had a qualitative design, using predominately in-depth interviews; seven were retrospective surveys. Five analytical themes represented families' experiences in assisted dying: (1) context of the decision , (2) grounding the decision , (3) cognitive and emotional work , (4) experiencing the final farewell and (5) grief and bereavement . The results showed that families can be very involved in supporting patients seeking assisted dying, where open communication is maintained. Family involvement appeared to be influenced by the type of legislation in their country and the families' perception of the social acceptability of assisted dying., Conclusion: Our data confirm that families across all jurisdictions are involved in assisted suicide decision and enactment. Family needs are under-researched, and clinical guidelines should incorporate recommendations about how to consider family needs and how to provide them with evidence-based tailored interventions.

Background: Some people experience exceptionally severe bereavement grief, and this level of post-death grief could potentially be the result of a low quality dying process., Aims: A pilot study was conducted to determine if a relationship exists between perceived death quality and bereavement grief intensity., Methods: A questionnaire was developed and posted online for data on bereavement grief intensity, perceived death quality, and decedent and bereaved person characteristics. Data from 151 Canadian volunteers were analysed using bi-variate and multiple linear regression tests., Findings: Half had high levels of grief, and over half rated the death as more bad than good. Perceived death quality and post-death grief intensity were close to being negatively correlated., Conclusion: These findings indicate research is needed to explore possible connections between bereavement grief and the survivor's perceptions of whether a good or bad death took place. In the meantime, it is important for palliative care nurses to think of the quality of the dying process as being potentially very impactful on the people who will be left to grieve that death.

Purpose: Although family caregivers (FCs) of older adults with cancer (OACs) provide invaluable assistance by fulfilling multiple tasks along the cancer trajectory, evidence suggests that their needs are poorly assessed, and there is a scarcity of supportive interventions that influence their well-being. Viewing these issues as opportunities for improvement, we conducted this qualitative study to understand FCs' needs and identify promising needs-focused interventions., Methods: This descriptive interpretive qualitative study was conducted in Quebec, Canada, in a French Canadian Oncology Clinic. Participants were FCs who were spouses or adult children (n = 25) of OACs aged 70 years or older. Data were collected via focus groups and were analyzed using an ongoing analytic process following each interview., Results: Three types of needs were of particular importance: information, relationships between FC and others, and care for oneself. The need for information was described in terms of the content, timeliness, and modalities in which information should be verbalized and delivered. The need for relationships specifically targeted health care providers (HCPs), family members, and OACs. The need to care for oneself was recognized as important throughout the cancer trajectory but also represented a challenge. Participants proposed innovative ideas for interventions, resources, and strategies for each type of need., Conclusions: According to our results, HCPs should systematically include FCs into OACs' care plan through the use of concrete actions such as the "family systems approach" suggested by Duhamel, and integrate a systematic FC's needs assessment.

Background: Adults with cystic fibrosis (CF) must continuously manage their condition, while working for a living, and want a normal life. Adherence rates to treatments/medications are less than optimal. Existing theory offers little to explain adherence rates. The purpose of this study was to develop a theory to further the understanding of how people with CF manage their condition in an adherence-driven health care system., Methods: Constructivist Grounded Theory methodology was used to conduct 27 semistructured interviews with adults with CF, family members, and health care providers. Data collection and analysis were simultaneous, using constant comparative methods, initial and focused coding, and category identification and reduction to develop a theory., Results: Doing what works to balance life and CF is the theory generated from this study. The main concern of participants was to be seen as normal. The theory depicts what participants with CF and their family members do about their concerns and involves 4 interrelated processes: working overtime, receiving support, passing as normal, and facing disease progression., Conclusion: Participants did not relate to the term nonadherent; rather they described working overtime to manage CF, to work, and to have a normal life. Health care provider and researcher perspectives on adherence differ from those of people with CF. Engaging adults with CF and health care providers in a dialogue in which expectations are shared may lead to individualized treatment regimens that work, because adults with CF will do what works., (Copyright © 2019 by Daedalus Enterprises.)

Varying perceptions of who should be responsible for supporting individuals with mental health problems may contribute to their needs remaining unmet. A qualitative descriptive design was used to explore these perceptions among key stakeholders. Focus groups were conducted with 13 service users, 12 family members, and 18 treatment providers from an early psychosis intervention program in Montreal, Canada. Individual interviews were conducted with six mental health policy-/decision-makers. Participants across stakeholder groups assigned a range of responsibilities to individuals with mental health problems, stakeholders in these individuals' immediate and extended social networks (e.g., families), macro-level stakeholders with influence (e.g., government), and society as a whole. Perceived failings of the health care system and the need for greater sharing of roles and responsibilities also emerged as important themes. Our findings suggest that different stakeholders should collectively assume certain responsibilities and that systems-level failings may contribute to unmet needs for mental health support.

Introduction: This paper details a subset of the findings from a participatory action research project exploring a palliative intervention in long-term care sites across Canada. The findings presented in this paper relate to understanding compassion within the context of a palliative approach to long-term care., Methods: Findings presented are drawn from qualitative interviews and focus groups with residents, family members, healthcare providers, and managers from 4 long-term care sites across 4 provinces in Canada. In total, there were 117 individuals (20 residents, 16 family members, 72 healthcare providers, and 9 managers) who participated in one of 19 focus groups. Data was analyzed by multiple members of the research team in accordance with thematic analysis. Individual concepts were organized into themes across the different focus groups and the results were used to build a conceptual understanding of compassion within Long Term Care ., Findings: Two themes, each comprised of 5 sub-themes, emerged from the data. The first theme 'Conceptualizing Compassion in Long-Term Care generated a multidimensional understanding of compassion that was congruent with previous theoretical models. 'Organizational Compassion: resources and staffing', the second major theme, focused on the operationalization of compassion within the practice setting and organizational culture. Organizational Compassion subthemes focused on how compassion could support staff to enact care for the residents, the families, one another, and at times, recognizing their pain and supporting it through grief and mourning., Conclusions: Results suggest that compassion is an essential part of care and relationships within long-term care, though it is shaped by personal and professional relational aspects of care and bound by organizational and systemic issues. Findings suggest that compassion may be an under-recognised, but essential element in meeting the promise of person-centred care within long-term care environments.

Aim: To understand what service features would sustain patient engagement in early intervention mental health treatment., Methods: Mental health patients, family members of individuals with mental illness and mental health professionals completed a survey consisting of 18 choice tasks that involved 14 different service attributes. Preferences were ascertained using importance and utility scores. Latent class analysis revealed segments characterized by distinct preferences. Simulations were carried out to estimate utilization of hypothetical clinical services., Results: Overall, 333 patients and family members and 183 professionals (N = 516) participated. Respondents were distributed between a Professional segment (53%) and a Patient segment (47%) that differed in a number of their preferences including for appointment times, individual vs group sessions and mode of after-hours support. Members of both segments shared preferences for many of the service attributes including having crisis support available 24 h per day, having a choice of different treatment modalities, being offered help for substance use problems and having a focus on improving symptoms rather than functioning. Simulations predicted that 60% of the Patient segment thought patients would remain engaged with a Hospital service, while 69% of the Professional segment thought patients would be most likely to remain engaged with an E-Health service., Conclusions: Patients, family members and professionals shared a number of preferences about what service characteristics will optimize patient engagement in early intervention services but diverged on others. Providing effective crisis support as well as a range of treatment options should be prioritized in the future design of early intervention services., (© 2017 John Wiley & Sons Australia, Ltd.)

Objectives: To quantify agreement between patients and their family members on their own values and preferences for use or non-use of life-sustaining treatments for the patient., Methods: Hospitalised patients aged 55 years or older with advanced pulmonary, cardiac, liver disease or metastatic cancer or aged 80 years or older from medical wards at 16 Canadian hospitals and their family members completed a questionnaire including eight items about values related to life-sustaining treatment and a question about preferences for life-sustaining treatments., Results: We recruited a total of 313 patient-family member dyads. Crude agreement between patients and family members about values related to life-sustaining treatment was 42% across all eight items but varied widely: 20% when asking how important it was for the patient to respect the wishes of family members regarding their care; 72% when asking how important it was for the patient to be kept comfortable and suffer as little as possible. Crude agreement on preferences for life-sustaining treatment was 91% (kappa 0.60; 95%CI 0.45 to 0.75) when looking at preferences for cardiopulmonary resuscitation (CPR) versus no CPR but fell to 56% when including all five response options with varying degrees of resuscitative, medical or comfort options (kappa 0.39; 95%CI 0.31 to 0.47)., Conclusions: There is appreciable disagreement between seriously ill hospitalised patients and family members in their values and preferences for life-sustaining treatment. Strategies are needed to improve the quality of advance care planning, so that surrogates are better able to honour patient's wishes at the end of life., (© Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2019. All rights reserved. No commercial use is permitted unless otherwise expressly granted.)

Background: The purpose of this study was to gain an in-depth understanding on the subject of relapse from the perspectives of family members of young people receiving services for a first-episode psychosis (FEP)., Methods: A qualitative descriptive approach, using focus group methods, was used to elicit experiences, understandings, and knowledge of relapse in FEP. Family members were recruited from 4 specialized early intervention programmes for psychosis in Canada. A total of 24 (6 male, 18 female) family members participated in the study. Thematic analysis was used to examine the data., Results: The core underlying theme in all focus groups was worrying about relapse, which was often accompanied by significant levels of fear and anxiety, and was influenced by: (1) impact of an episode of psychosis; (2) limited confidence in recognizing and coping with relapse; (3) unmet needs for coping skills and emotional support and (4) unmet needs regarding frequency and continuity of communication with clinicians., Conclusions: Family members' unmet needs for relapse-focused education, support and communication with service providers and peers, can have a negative impact on relapse prevention. Addressing family members' education and support needs in a tailored manner (including preferences for types of peer support) can contribute positively to their confidence and ability to recognize and respond to relapse. This can help reduce fear and anxieties about relapse, and positively influence the ability to function as caregivers. Future research should focus on best approaches for providing education, sustained contact with the clinical team and family peer support., (© 2017 John Wiley & Sons Australia, Ltd.)

Objectives: Ethnic minority elders have high levels of social isolation and loneliness. Assumptions about the family providing enough social support exist in the literature, contradicting ethnic minority elders' reported levels of isolation and loneliness. While structural barriers influence feelings of isolation and loneliness, limited information exists about the role of cultural factors such as acculturation and family values. Accordingly, this study investigated the roles of acculturation and family values on loneliness and social isolation among ethnic minority elders., Methods: Ethnic minority elders (N = 123) completed a questionnaire that assessed their social connectedness, measured by social network and levels of loneliness, and structural factors such as income. Additionally, cultural and family values were assessed by acculturation and the 'family as referents' dimension of familism, which refers to the belief that family members' behaviour should meet with familial expectations., Results: Statistical analysis using hierarchical regression indicated that 'family as referents' and acculturation predicted loneliness, but not social network., Conclusions: This study raises the importance of considering cultural values when investigating predictors of loneliness among ethnic minority elders., Clinical Implications: Findings highlight the importance of addressing familial expectations in programs aimed at alleviating loneliness among ethnic minority elders.

Objectives: Critical illness can have a significant psychological impact on patients and their families. To inform the design of a larger trial, we assessed feasibility of ICU diaries and psychoeducation to prevent posttraumatic stress disorder, depression, and anxiety following ICU stays., Design: Four-arm pilot randomized controlled trial., Setting: A 10-bed tertiary ICU in Winnipeg, MB, Canada., Patients: Critically ill patients greater than 17 years old with predicted ICU stays greater than 72 hours and mechanical ventilation duration greater than 24 hours., Interventions: Patients were randomized to usual care, ICU diary, psychoeducation, or both ICU diary and psychoeducation., Measurements and Main Results: Our primary objective was to determine feasibility measured by enrollment/mo. Secondary outcomes included acceptability of the ICU diary intervention and psychological distress, including patients' memories 1 week post ICU using the ICU Memory Tool, posttraumatic stress disorder (Impact of Events Scale-Revised), depression, and anxiety symptoms (Hospital Anxiety and Depression Scale) 30 and 90 days post ICU. Over 3.5 years, we enrolled 58 patients, an average of 1.9 participants/mo. Families and healthcare providers wrote a mean of 3.2 diary entries/d (SD, 2.9) and indicated positive attitudes and low perceived burden toward ICU diary participation. A majority of patients reported distressing memories of their ICU stay. Those who received the diary intervention had significantly lower median Hospital Anxiety and Depression Scale anxiety (3.0 [interquartile range, 2-6.25] vs 8.0 [interquartile range, 7-10]; p = 0.01) and depression (3.0 [interquartile range, 1.75-5.25] vs 5.0 [interquartile range, 4-9]; p = 0.04) symptom scores at 90 days than patients who did not receive a diary., Conclusions: ICU diaries are a feasible intervention in a tertiary Canadian ICU context. Preliminary evidence supports the efficacy of ICU diaries to reduce psychological morbidity following discharge.

Background and Aims: Previous research on supported housing for people with serious mental illness focuses primarily on tenant/client experiences. The aim of this article is to present families' perspectives on the role of supported housing in recovery, utilizing the CHIME framework of personal recovery., Method: Qualitative interviews were conducted with 14 families of individuals with serious mental illness living in supported housing. Participants were across five supported housing sites in four Canadian provinces., Results: Families credited supported housing with helping tenants redefine a positive sense of identity, re-establish social relationships and regain control over their lives. Families were less confident about supported housing facilitating future employment or 'full' recovery, focusing on stability rather than continual improvement., Conclusion: This is one of the first studies to report family perspectives on the role of supported housing in their loved one's recovery processes - both strengths and weaknesses.

Background: Organ donation research has centered on improving donation rates rather than focusing on the experience and impact on substitute decision makers. The purpose of this study was to document donor and nondonor family experiences, as well as lasting impacts of donation., Methods: We used a qualitative exploratory design. Semistructured interviews of 27 next-of-kin decision makers were conducted, transcribed verbatim, and entered into qualitative software. We analyzed the process-based reflections using inductive coding and thematic analysis techniques., Results: Four broad and interrelated themes emerged from the data: empathetic care, information needs, donation decision, and impact and follow-up. The donation experience left lasting impacts on family members due to lingering, unanswered questions. Suggested solutions to improve the donor experience for families included providers employing multimodal communication, ensuring a proper setting for family meetings, and the presence of a support person., Discussion: We now have improved our understanding of the donation process from the perspective of and final impression from the next of kin. To our knowledge, this is the largest cohort interviewed in Canada. We have explored families' experiences, which included but did not end with donation. We learned that despite being appreciative of nurses, physicians, and organ and tissue donation coordinators, family members were often troubled by unanswered questions., Conclusion: This study described donor and nondonor family experiences with donation as well as lasting impacts. Addressing unanswered questions should be done in a place sufficiently remote from the donation event to enhance the family members' understanding and well-being.