Developing a compassionate community: a Canadian conceptual model for community capacity development.

The purpose of this article is to share a Canadian model called Developing a Compassionate Community (DCC) in which aging, dying, caregiving, and grieving are everyone's responsibility. The model provides a research-informed practice guide for people who choose to adopt a community capacity development approach to developing a compassioante community. Based on 30 years of Canadian research by the author in rural, urban, First Nations communities, and long-term care homes, the DCC model offers a practice theory and practical tool. The model incorporates the principles of community capacity development which are as follows: change is incremental and in phases, but nonlinear and dynamic; the change process takes time; development is essentially about developing people; development builds on existing resources (assets); development cannot be imposed from the outside; and development is ongoing (never-ending). Community capacity development starts with citizens who want to make positive changes in their lives and their community. They become empowered by gaining the knowledge, skills, and resources they need. The community mobilizes around finding solutions rather than discussing problems. Passion propels their action and commitment drives the process. The strategy for change is engaging, empowering, and educating community members to act on their own behalf. It requires mobilizing networks of families, friends, and neighbors across the community, wherever people live, work, or play. Community networks are encouraged to prepare for later life, and for giving and getting help among themselves. This Canadian model offers communities one approach to developing a compassionate community and is a resource for implementing a public health approach to end-of-life care in Canada. The model is also available to be evaluated for its applicability beyond Canada and is designed to be adapted to new contexts if desired.

Examining Influences on Problem Recognition and Help-Seeking for Child Externalizing Behaviors Among African American Mothers.

Childhood behavior problems are one of the most common clinical referrals. If left untreated, these behaviors can result in detrimental consequences to the child's development (Wehmeier et al., 2010; Scholtens et al., 2012). Behavior parent training has been identified as first-line treatment for oppositional behavior; however, many racial minority families fail to enroll in behavior parent training. The current study examines maternal help-seeking for children displaying oppositional behavior in hopes to delineate variables that might influence parent training enrollment among African American families. Participants were 112 African American mothers who were provided child behavior vignettes and completed measures assessing factors related to problem recognition, parental attributions, child rearing values, mental health stigmatization, racial identity, and treatment utilization. Results found that when presented with a child displaying clinically significant externalizing child behaviors, slightly more than half of African American mothers recognized clinically significant child behavior problems. Mothers were more likely to engage in behavioral parent training if problematic behavior was recognized. Additionally, mothers' attributions of child behavior, cultural values, and mental health stigmatization were influential to help seeking. This study supports the importance of considering cultural variables that impact problem recognition and subsequent treatment utilization among African American families.

Young Adult Routines Inventory (YARI): Development and Initial Validation.

Young adulthood is characterized by important life transitions (e.g., college, employment, relocation, marriage), where time management skills and routines help promote positive adjustment. Routines are observable, repetitive behavior that are context specific and automate aspects of daily life (e.g., personal hygiene, health, occupational, academic). Although measures of routines exist for children, adolescents, and older adults, similar measures assessing young adult routines are lacking. The purpose of this study was to develop and initially validate The Young Adult Routines Inventory (YARI). Analyses revealed a four-factor measure reflecting daily routines, social routines, time management, and procrastination. The YARI demonstrates good internal consistency, construct, and convergent validity, and was positively correlated with measures of emotional well-being and perceived life satisfaction. The YARI was negatively correlated with self-reported symptoms of Attention-Deficit/Hyperactivity Disorder (ADHD) and successfully distinguished individuals with and without ADHD symptomatology. Preliminary evidence suggests the YARI is a promising measure of young adult routines.

Building Palliative Care Capacity for Generalist Providers in the Community: Results From the Capaciti Pilot Education Program.

Objective: Primary care providers play an important role in providing early palliative care, however they often lack practical supports to operationalize this approach in practice. CAPACITI is a virtual training program aimed at providing practical tips, strategies, and action plans to help primary care providers offer an early palliative approach to care. The CAPACITI pilot program consisted of 10 facilitated, monthly training sessions, covering identification and assessment, communication, and engaging caregivers and specialists. We present the findings of an evaluation of the pilot program. Method: We conducted a single cohort study of primary care providers who participated in CAPACITI. Study outcomes were the change in the percentage of caseload reported as requiring palliative care and improved confidence in competencies measured on a 20-item, study-created survey. Pre and post survey data were analyzed using paired t-tests. Results: Twenty-two teams representing 127 care providers (including 36 physicians and 28 Nurse Practitioners) completed CAPACITI. Paired comparisons showed a moderate improvement in confidence across the competencies covered (.6 to 1.3 mean improvement across items using seven-point scales, all P < .05). Pre-CAPACITI, clinician prescribers (N = 32) identified a mean of 1.2% of their caseload requiring a palliative approach to care, which increased to 1.6% post-program (P = .02). Said differently, the total group of paired clinician prescribers identified 338 patients as requiring palliative care in their caseloads at baseline vs 482 patients following the intervention, for an overall increase of 144 patients in their collective caseloads. Conclusion: CAPACITI improved self-assessed palliative care identification and provider confidence in core competencies. The program demonstrated potential for building palliative care capacity in primary care teams.

Trajectories of Posttraumatic Stress in Youths After Natural Disasters.

Importance: Disaster exposure is associated with the development of posttraumatic stress (PTS) symptoms in youths. However, little is known about how to predict which youths will develop chronic PTS symptoms after disaster exposure. Objective: To evaluate PTS symptom trajectories among youths after 4 major US hurricanes and assess factors associated with those trajectories. Design, Setting, and Participants: This cohort study used integrative data analysis to combine data from 4 studies of youths' responses to natural disasters (hurricanes Andrew [1992], Charley [2004], Ike [2005], and Katrina [2008]) at time points ranging from 3 to 26 months after the disasters. Those studies recruited and surveyed youths aged 6 to 16 years at schools via convenience sampling of schools near the path of destruction for each hurricane. This study was conducted from August 2017 to August 2020, and pooled data were analyzed from February 2019 to October 2020. Exposure: Experience of a natural disaster during the ages of 6 to 16 years. Main Outcomes and Measures: Posttraumatic stress symptoms were assessed using the University of California, Los Angeles, Posttraumatic Stress Disorder Reaction Index (UCLA PTSD-RI) and the UCLA PTSD-RI-Revised. Latent class growth analyses were used to evaluate the youths' PTS symptom trajectories and associated factors. Results: Among 1707 youths included in the study, the mean (SD) age was 9.61 (1.60) years, 922 (54%) were female, and 785 (46%) self-identified as White non-Hispanic. Four PTS symptom trajectories were identified: chronic (171 participants [10%]), recovery (393 [23%]), moderate-stable (563 [33%]), and low-decreasing (580 [34%]). Older youths were less likely to be in the chronic group; compared with the chronic group, each 1-year increase in age was associated with increased odds of being in the other groups (recovery: odds ratio [OR], 1.78 [95% CI, 1.29-2.48]; moderate-stable: OR, 1.94 [95% CI, 1.43-2.62]; and low-decreasing: OR, 2.71 [95% CI, 1.99-3.71]). Compared with males, females had higher odds of being in the chronic group than in any other group (recovery group: OR, 0.48 [95% CI, 0.26-0.91]; moderate-stable group: OR, 0.37 [95% CI, 0.21-0.64]; and low-decreasing group: OR, 0.25 [95% CI, 0.14-0.44]). Conclusions and Relevance: In this cohort study, few youths reported chronic distress, and trajectories among most youths reflected recovery or low-decreasing PTS symptoms. Older age and identification as male were factors associated with decreased odds of a chronic trajectory. Youths with chronic or moderate-stable trajectories may benefit from intervention.

Common care practices among effective community-based specialist palliative care teams: a qualitative study.

OBJECTIVE: Evidence has shown that, despite wide variation in models of care, community-based specialist palliative care teams can improve outcomes and reduce acute care use at end of life. The goal of this study was to explore similarities in care practices among effective and diverse specialist teams to inform the development of other community-based teams. METHODS: Interviews with 78 providers and administrators from 11 distinct community-based specialist palliative care teams from Ontario, Canada were conducted. Interviews were audio-recorded, transcribed and analysed using an inductive approach to identify common themes. RESULTS: 3 key themes across all teams emerged. First, the distinct models of care were generally summarised into 3 models: primary care and specialist providers either collaborated by transferring, sharing or consulting in care. Second, teams explicitly or implicitly followed 7 common care practices related to: specialised expertise 24/7; intrateam communication; timeliness; physical symptom and psychosocial-spiritual management; education; peace and fulfilment; and advocacy for patient preferences. Third, all teams emphasised the importance of team building, even more than using clinical tools and processes. CONCLUSIONS: Despite wide variation in models of care among community-based specialist palliative care teams, this large qualitative study identified several common themes in care practices that can guide the development of other teams.

"If you understand you cope better with it": the role of education in building palliative care capacity in four First Nations communities in Canada.

BACKGROUND: In Canada, there is a growing need to develop community-based, culturally appropriate palliative care for Indigenous people living in First Nations communities. The public health approach to palliative care, which emphasizes community-based initiatives, is especially relevant in First Nations communities because care is grounded in their distinct social and cultural context. Central to the public health approach are educational strategies that strengthen communities' capacity to care for their vulnerable members as they die. This paper presents community-based research conducted with First Nations communities in Canada that aimed to assess and address local palliative care educational needs to improve community capacity in palliative care. METHODS: Participatory action research (PAR) was conducted with four First Nations communities in Canada over a six-year period (2010-2016). The research occurred in three phases. Phase 1: focus groups, interviews and surveys were employed to assess community specific needs and resources. Phase 2: recommendations were developed to guide the PAR process. Phase 3: educational resources were created to address the identified educational needs. These resources were implemented incrementally over 4 years. Ongoing process evaluation was employed, and revisions were made as required. RESULTS: Educational needs were identified for patients, families, community members and internal and external health care providers. A wide and comprehensive range of educational resources were created to address those needs. Those culturally appropriate educational resources are available in a very accessible and useable workbook format and are available for use by other Indigenous people and communities. CONCLUSIONS: This research provides an example of the public health approach and offers implementation strategies around palliative care education. This paper contributes to the international literature on the public health approach to palliative care by presenting a case study from Canada that includes: conducting a culturally appropriate assessment of educational needs, creating recommendations, facilitating development and implementation of educational resources in the community to improve community capacity in palliative care.

'That just breaks my heart': Moral Concerns of Direct Care Workers Providing Palliative Care in LTC Homes.

ABSTRACTThe literature on ethics in health care that explores the moral concerns of care providers typically focuses on registered health professionals and ethical dilemmas in acute and primary care. Far less attention has been paid to the long-term care (LTC) environment and non-registered, direct care workers. To address this gap, this research examined the moral concerns of personal support workers (PSWs) who provide direct care to residents. Data were collected during a 5-year participatory action research project to formalize palliative care programs in LTC homes. Eleven focus groups explored PSWs' experiences providing palliative care in LTC homes, their challenges and learning needs (n = 45). In-depth secondary analysis of these focus groups found that PSWs experienced moral dilemmas. Two main moral dilemmas were ensuring that residents don't die alone; and providing the appropriate care based on residents' wishes. Their organizational constraints coalesced around policies, hierarchy, time, and balancing residents' needs.

The Influence of Race and Income on Community Mothers' Acceptance of Child Management Methods.

The consideration of diverse family factors on parents' acceptance of behavioral parent training (BPT) components aids in the development and delivery of culturally sensitive parenting programs. Perceptions of acceptability are particularly important to investigate among low-income and racial-minority families, as they are less likely to engage in nonadapted BPT programs. Therefore, the current study examines the synergistic effects of race and income on mothers' acceptance of five common child management methods relevant to BPT. The relationship between mothers' acceptability ratings and self-reported parenting practices was also explored. Participants were 106 White and Black mothers from different income levels who completed measures related to the acceptability of response cost, positive reinforcement, time-out, spanking, and medication. The results indicated that mothers from varying backgrounds differed in their acceptance of child management methods, particularly with regard to corporal punishment. Additionally, a relationship was found between parents' acceptability ratings and their self-reported parenting behavior. The findings support the consideration of parents' perceptions of child discipline methods when recommending and delivering BPT programs to diverse parents.

Trauma-informed schools: Child disaster exposure, community violence and somatic symptoms.

BACKGROUND: Given the increasing prevalence of natural disasters, trauma-informed school settings should include efficient methods for assessing child health and mental health in post-disaster environments. To develop such methods, factors that contribute to children's vulnerability and key signs of distress reactions after disasters need to be understood. To address these issues, we evaluated pre-disaster community violence exposure as a vulnerability factor for children's post-disaster reactions and somatic symptoms as a key post-disaster outcome. METHODS: We evaluated 426 children exposed to Hurricane Katrina at two timepoints (3-7 months and 13-17 months post-disaster). Structural equation models evaluated community violence exposure, hurricane exposure, and posttraumatic stress and somatic symptoms. RESULTS: Community violence exposure was associated with increased levels of posttraumatic stress symptoms among disaster-impacted youth, and did not moderate the relationship between disaster exposure and posttraumatic stress symptoms. Posttraumatic stress symptoms were associated with somatic symptoms in the short-term recovery period (3-7 months), but not associated with somatic symptoms during the longer-term recovery period (13-17 months). LIMITATIONS: This study did not include school-level factors, and somatic symptoms were based on parent reports. The study did not include parent functioning information or distinguish between whether somatic symptoms were medical or functional in nature. CONCLUSIONS: Post-disaster school-based screeners may need to incorporate questions related to children's past exposure to community violence and their somatic symptoms to provide trauma-informed care for children.

Developing palliative care programs in Indigenous communities using participatory action research: a Canadian application of the public health approach to palliative care.

BACKGROUND: The Indigenous people of Canada include First Nations, Inuit and Metis. This research focused on four diverse First Nations communities located in Ontario and Manitoba. First Nations communities have well-established culturally-based social processes for supporting their community members experiencing dying, loss, grief and bereavement. However, communities do not have formalized local palliative care (PC) programs and have limited access to medical services, especially pain and symptom management. METHODS: Researchers conducted participatory action research (PAR) in partnership with four First Nations communities to create local PC programs. A conceptual framework for community capacity development (Kelley model) and an integrative framework for PC research with First Nations communities guided the research over 6 years. Based on a community assessment, Elders and Knowledge Carriers, community leaders and First Nations health care providers created PC programs grounded in the unique social, spiritual and cultural practices of each community, and integrated them into local health services. Maintaining local control, community members engaged external health care organizations to address gaps in health services. Strategies such as journey mapping clarified roles and strengthened partnerships between community and external health care providers. Finally, community members advocated for needed funding, medication and equipment to provide palliative home care. The research team provided mentorship, facilitation, support, education and resources to the community leaders and documented and evaluated their capacity development process. RESULTS: Our findings contribute to PC practice, policy and research. Four unique PC programs were created that offered First Nations people the choice to receive PC at home, supported by family, community and culture. A workbook of culturally relevant resources was developed for use by interested First Nations communities across Canada, including resources for program development, direct care, education, and engaging external partners. Policy recommendations and a policy framework to guide PC program development in First Nations communities were created. All research outcomes were published on a website and disseminated nationally and internationally. Our work also contributes to furthering discussions of research methods that can advance public health and PC initiatives. We demonstrated the achievements of PAR methods in strengthening community action, developing the personal skills of community health care providers and creating more supportive environments for First Nations people who wish to die at home. The Kelley model was adapted for use by First Nations communities. We also identified keys to success for capacity development. CONCLUSIONS: This research provides a Canadian example of implementing a public health approach to PC in an Indigenous context using PAR. It provides evidence of the effectiveness of a community capacity development as a strategy and illustrates how to implement it. This approach, fully grounded in local culture and context, has potential to be adapted to Indigenous communities elsewhere in Canada and internationally.

Wiisokotaatiwin: development and evaluation of a community-based palliative care program in Naotkamegwanning First Nation.

INTRODUCTION: Approximately 474 000 Indigenous people live in 617 First Nations communities across Canada; 125 of those communities are located in Ontario, primarily in rural and remote areas. Common rural health challenges, including for palliative care, involve quality and access. The need for culturally relevant palliative care programs in First Nations communities is urgent because the population is aging with a high burden of chronic and terminal disease. Because local palliative care is lacking, most First Nations people now leave their culture, family and community to receive care in distant hospitals or long-term care homes. Due to jurisdictional issues, a policy gap exists where neither federal nor provincial governments takes responsibility for funding palliative care in First Nations communities. Further, no Canadian program models existed for how different levels of government can collaborate to fund and deliver palliative care in First Nations communities. This article describes an innovative, community-based palliative care program (Wiisokotaatiwin) developed in rural Naotkamegwanning, and presents the results of a process evaluation of its pilot implementation. The evaluation aimed to (i) document the program's pilot implementation, (ii) assess progress toward intended program outcomes and (iii) assess the perceived value of the program. METHODS: The Wiisokotaatiwin Program was developed and implemented over 5 years using participatory action research (http://www.eolfn.lakeheadu.ca). A mixed-method evaluation approach was adopted. Descriptive data were extracted from program documents (eg client registration forms). Client tracking forms documented service provision data for a 4-month sample period. Quantitative and qualitative data were collected through client and family member questionnaires (n=7) and healthcare provider questionnaires (n=22). A focus group was conducted with the program leadership team responsible for program development. Quantitative data were summarized using descriptive statistics. An inductive approach was used to identify themes in the qualitative data related to the evaluation questions. RESULTS: The findings demonstrated the program was implemented as intended, and that there was a need for the program, with six clients on the 10-month pilot. The findings also indicated achievement of program-level outcomes and progress toward system-level outcomes. Clients/families and healthcare providers were satisfied with the program and perceived it to be meeting its objectives. The program model was also perceived to be transferrable to other First Nations communities. The results demonstrate how a rural First Nations community can build capacity and develop a palliative care program tailored to their unique culture and context that builds upon and is integrated into existing services. CONCLUSIONS: The Wiisokotaatiwin Program allowed community members to receive their palliative care at home, improved client experience and enhanced service integration. This article provides a First Nations specific model for a palliative care program that overcomes jurisdictional issues at the local level, and a methodology for developing and evaluating community-based palliative care programs in rural First Nations communities. The article demonstrates how local, federal and provincial healthcare providers and organizations collaborated to build capacity, fund and deliver community-based palliative care. The described process of developing the program has applicability in other First Nations (Indigenous) communities and for healthcare decisionmakers.

The relationship between social support and posttraumatic stress symptoms among youth exposed to a natural disaster.

Background: Children are a vulnerable population following a natural disaster, due to their age and dependence on adults. The primary presenting problem children report after disasters is posttraumatic stress symptoms (PTSS). Prior research suggests that PTSS is inversely related to social support, which is often disrupted after a disaster. Objective: This study examined the relationship between social support (from parents, teachers, and peers) and PTSS in children affected by Hurricane Katrina. The research contributes to the literature by examining the mechanisms that drive this relationship over time. Methods: In this study, 426 children were followed over four timepoints, beginning 3-7 months after Hurricane Katrina and concluding 25-27 months post-hurricane. Three path models analysed the relationship between social support (from parents, teachers, and peers, measured by the Social Support Scale for Children) and PTSS (measured by the UCLA PTSD Reaction Index). Covariates included child age, minority status, gender, perceived life threat, and actual life threat. Nonsignificant paths were trimmed from the final models. Global fit indices were examined to determine model fit. Results: In the parent and peer social support models, PTSS exhibited statistically significant effects on social support from one wave to the next. In the teacher model, this was only true between Waves 2 and 3. Social support showed a statistically significant effect on PTSS between Wave 2 and Wave 3 in the peer model (standardized estimate = -0.26, p < .0001). No paths from social support to PTSS were significant in the parent and teacher models. Conclusion: Findings support a social selection model in which PTSS undermine social support, particularly in the first two years post-disaster. If these findings are replicated, this suggests that, in cases of limited funding, PTSS should be prioritized, given their cascading effects on social support.

Planteamiento: Los niños son una población vulnerable después de un desastre natural, debido a su edad y a su dependencia de los adultos. El principal problema que presentan los niños después de los desastres son síntomas de estrés postraumático (SEPT). La investigación previa sugiere que los SEPT están inversamente relacionados con el apoyo social, que a menudo se ve afectado después de un desastre. Objetivo: Este estudio examinó la relación entre el apoyo social (de padres, maestros y compañeros) y los SEPT en niños afectados por el huracán Katrina. La investigación contribuye a la literatura mediante el examen de los mecanismos en los que se basa esta relación a lo largo del tiempo. Métodos: En este estudio, se siguió a 426 niños a lo largo de cuatro puntos en el tiempo, comenzando 3-7 meses después del huracán Katrina y concluyendo 25-27 meses después del huracán. Tres modelos de pautas analizaron la relación entre el apoyo social (de padres, maestros y compañeros, medido por la Escala de apoyo social para niños) y los SEPT (medido por el índice de reacción de TEPT de UCLA). Las covariables incluyeron la edad del niño, el estatus de minoría, el género, la amenaza de muerte percibida y la amenaza de muerte real. Las pautas no significativas fueron excluidas de los modelos finales. Se examinaron los índices de ajuste global para determinar el ajuste del modelo. Resultados: En los modelos de apoyo social para padres e iguales, los SEPT mostraron efectos estadísticamente significativos en el apoyo social de una onda a la siguiente. En el modelo de maestros, esto solo fue cierto entre las ondas 2 y 3. El apoyo social mostró un efecto estadísticamente significativo en los SEPT entre la onda 2 y la onda 3 en el modelo de iguales (estimación estandarizada = −0.26, p < .0001). Ninguna pauta desde el apoyo social a los SEPT fue significativa en los modelos de padres y maestros. Conclusión: Los hallazgos apoyan un modelo de selección social en el que los SEPT socavan el apoyo social, especialmente en los dos primeros años después del desastre. Si se replican estos hallazgos, esto sugiere que, en casos de financiación limitada, se debe priorizar los SEPT, dados sus efectos en cascada sobre el apoyo social.

The evolution of the Kelley community capacity development model for palliative care.

This oral presentation will describe the conceptual evolution of the Kelley model for Community Capacity Development [2000-2016]. It will illustrate how and why the model changed to become a powerful Canadian example of a public health approach to developing community based palliative care programs. Based on conducting participatory action research in rural, First Nations communities and long-term care homes, the perspective of "community" gradually expanded beyond health care professionals to include natural helpers, front line care providers, formal and informal community leaders, and social services. The Kelley model has potential to be applied internationally since it builds a context specific palliative care program that is grounded in the local community and uses existing informal and formal resources. The Kelley model is a theory of change and can be used to guide a process of developing community-based palliative care programs. The model includes a series of four incremental but non-linear phases. Development is a bottom-up process that is grounded in the unique needs, vision, culture and values of a specific community. Community change is made from inside the community and not from outside. Development builds on existing resources, relationships, strengths and assets. Based on participatory action research and applying the model in rural communities, First Nations communities and long term care homes, the definition of the "community" in the model gradually expanded from registered health care providers and health services only. Supportive community members, often taken for granted by health care professionals but critical to the success of community palliative care, gradually became more visible through the research. The Kelley model of the palliative care community grew to include natural helpers, front line providers such as personal support workers, formal and informal community leaders, and social services. The Kelley model is a Canadian model that can be used to guide community based palliative care development in many diverse geographic, organizational or cultural communities. It can be applied internationally since it creates a palliative care program that is grounded in a unique local community and uses existing informal and formal resources.

An Analysis of Journey Mapping to Create a Palliative Care Pathway in a Canadian First Nations Community: Implications for Service Integration and Policy Development.

Providing palliative care in Indigenous communities is of growing international interest. This study describes and analyzes a unique journey mapping process undertaken in a First Nations community in rural Canada. The goal of this participatory action research was to improve quality and access to palliative care at home by better integrating First Nations' health services and urban non-Indigenous health services. Four journey mapping workshops were conducted to create a care pathway which was implemented with 6 clients. Workshop data were analyzed for learnings and promising practices. A follow-up focus group, workshop, and health care provider surveys identified the perceived benefits as improved service integration, improved palliative care, relationship building, communication, and partnerships. It is concluded that journey mapping improves service integration and is a promising practice for other First Nations communities. The implications for creating new policy to support developing culturally appropriate palliative care programs and cross-jurisdictional integration between the federal and provincial health services are discussed. Future research is required using an Indigenous paradigm.

Measuring Family Members' Satisfaction with End-of-Life Care in Long-Term Care: Adaptation of the CANHELP Lite Questionnaire.

RATIONALE: Improving end-of-life care (EOLC) in long-term care (LTC) homes requires quality measurement tools that assess families' satisfaction with care. This research adapted and pilot-tested an EOLC satisfaction measure (Canadian Health Care Evaluation Project (CANHELP) Lite Questionnaire) for use in LTC to measure families' perceptions of the EOLC experience and to be self-administered. METHODS AND RESULTS: Phase 1. A literature review identified key domains of satisfaction with EOLC in LTC, and original survey items were assessed for inclusiveness and relevance. Items were modified, and one item was added. PHASE 2: The revised questionnaire was administered to 118 LTC family members and cognitive interviews were conducted. Further modifications were made including reformatting to be self-administered. PHASE 3: The new instrument was pilot-tested with 134 family members. Importance ratings indicated good content and face validity. Cronbach's alpha coefficients (range: .88-.94) indicated internal consistency. CONCLUSION: This research adapted and pilot-tested the CANHELP for use in LTC. This paper introduces the new, valid, internally consistent, self-administered tool (CANHELP Lite Family Caregiver LTC) that can be used to measure families' perceptions of and satisfaction with EOLC. Future research should further validate the instrument and test its usefulness for quality improvement and care planning.

The role of unregulated care providers in managing heart failure patients in long-term care facilities.

AIMS AND OBJECTIVES: Heart failure is a complex syndrome in which abnormal heart function results in clinical symptoms and signs of low cardiac output and/or pulmonary or systemic congestion. Heart failure is common among long-term care residents, and is associated with significant morbidity and acute care utilisation. Heart failure guidelines endorse standard therapies, yet long-term care residents are less likely to receive recommended treatments. The objective of this study is to understand the perceptions and potential role of unregulated care providers in contributing to better heart failure management among long-term care residents. DESIGN: Focus group interviews. METHODS: This qualitative study employed focus groups to explore perceptions from 24 unregulated care providers in three Ontario, Canada long-term care homes, about barriers to the optimal management of heart failure. RESULTS: Three overarching concepts emerged characterising unregulated care providers' experiences in caring for residents with heart failure in long-term care: (1) the complexity of providing heart failure care in a long-term care setting, (2) striving for resident-centred decision making and (3) unregulated care providers role enactment nested within an interprofessional team in long-term care. These concepts reflect the complex interplay between individual unregulated care providers and residents, and heart failure-related, socio-cultural and organisational factors that influence heart failure care processes in the long-term care system. CONCLUSIONS: Optimising the management of heart failure in long-term care is contingent on greater engagement of unregulated care providers as active partners in the interprofessional care team. Interventions to improve heart failure management in long-term care must ensure that appropriate education is provided to all long-term care staff, including unregulated care providers, and in a manner that fosters greater and more effective interprofessional collaboration. RELEVANCE TO CLINICAL PRACTICE: Active and collaborative engagement unregulated care providers has the potential to improve the management of heart failure in long-term care residents.

Managing Heart Failure in Long-Term Care: Recommendations from an Interprofessional Stakeholder Consultation.

Heart failure (HF) affects up to 20 per cent of residents in long-term care (LTC) and is associated with substantial morbidity, mortality, and health service utilization. Our study objective was to formulate recommendations on implementing HF care processes in LTC. A three-phase and iterative stakeholder consultation process, guided by expert panel input, was employed to develop recommendations on implementing care processes for HF in LTC. This article presents the results of the third phase, which consisted of a series of interdisciplinary workshops. We developed 17 recommendations. Key elements of these recommendations focus on improving interprofessional communication and improving HF-related knowledge among all LTC stakeholders. Engaging frontline staff, including personal support workers, was stated as an essential component of all recommendations. System-level recommendations include improving communication between LTC homes and acute care and other external health service providers, and developing facility-wide interventions to reduce dietary sodium intake and increase physical activity.

Dying With Carolyn: Using Simulation to Improve Communication Skills of Unregulated Care Providers Working in Long-Term Care.

This article examines the development, implementation, and evaluation of a pilot project utilizing high-fidelity simulation (HFS) to improve frontline staff members' confidence and skills to communicate about death and dying in long-term care homes. The target group was unregulated care providers who provide palliative care for residents and their families. Eighteen participants engaged in the educational intervention and evaluation. Results supported the effectiveness of HFS as an educational tool for unregulated health care providers. Quantitative data showed statistically significant improvements in participants' self-efficacy scores related to communicating about death and dying and end-of-life care. Qualitative data indicated that the experience was a valuable learning opportunity and helped participants develop insights into their own values, beliefs, and fears providing end-of-life care. HFS is therefore recommended as an innovative training strategy to improve palliative care communication in long-term care homes.

OA21†The power to choose: developing community capacity to provide palliative care in four first nations communities in canada.

BACKGROUND: First Nations people in Canada are ageing with a high burden of chronic, progressive, and life-limiting illness. The majority now die in urban hospitals or long term care homes far away from family and culture. Today, First Nations community leaders are working to build local community capacity to support people and their families who choose to die at home. AIM: This presentation describes a five year participatory action research project that has enhanced local palliative care capacity in four First Nations communities using innovative strategies for collaboration, education, and advocacy (www.eolfn.lakeheadu.ca). METHODS: The process of community capacity development was locally driven and controlled. A local leader and advisory committee implemented a palliative care community assessment that identified resources and needs for community awareness, health provider education, service development and improved partnerships with external health care providers (physicians, hospitals etc) providing care to community members. Innovative strategies to address these needs were developed, implemented and evaluated. RESULTS: If services and community supports were available, 87% of the FN community participants would prefer to die at home. Each of the four participating FN communities developed a unique palliative care program model responsive to community culture and context. Culturally appropriate videos and print resources for education and community development were created to share internationally. CONCLUSION: First Nations communities have the desire and capacity to care for community members to the end of their lives. Community development and advocacy are required to support First Nations in addressing existing barriers and gaps in education, policy and service delivery.