NorthBEAT: exploring the service needs of youth experiencing early psychosis in Northern Ontario.

Introduction: Early Psychosis Intervention (EPI) is critical for best outcomes. Among 369 diseases, psychosis is among those causing the greatest disability. Evidence-based interventions for youth in early stages of psychosis (EPI programs) have prevented chronic disability. Yet, EPI is frequently inaccessible for youth living in rural communities. Moreover, Indigenous youth often face more precipitous situations given inadequate staffing, and culturally unsafe care. The NorthBEAT (Barriers to Early Assessment and Treatment) project sought to understand the service needs of youth with psychosis in Northern Ontario. The goals were: (1) to describe the mental health of a subset of adolescents receiving EPI care; (2) examine Indigenous youth as a significant and vulnerable population; (3) to understand the barriers and facilitators for Indigenous and non-Indigenous youth receiving EPI. Methods: Mixed methods (structured and narrative interviews) included: psychometric scales interviews with youth, and narrative interviews with youth, their family, and service providers Data validation workshops were held with participants. Results: Structured interviews with 26 youth (M = 17 years) found the participants functioning moderately well with duration of untreated psychosis ranging from 1 to 96 months (M = 26 months). No significant differences were found in functioning or duration of psychosis between Indigenous and non-Indigenous youth. Narrative interviews were conducted with 18 youth, 11 family members, and 14 service providers. Identified barriers were a lack of knowledge about psychosis among service providers, a disconnected system leading to delays in treatment, help not wanted by youth, expansive geographical context. Service needs were: finding the right point of access, support for families, pre-crisis intervention, reduced stigma for youth and their families, and an EPI approach to care. Discussion: Rural and northern youth face similar barriers to accessing EPI as urban youth. However, northern youth face additional unique challenges due to expansive geographical context, limited resources and lack of knowledge about services.

Culturally responsive evaluation: A scoping review of the evaluation literature.

Evaluators have become increasingly aware of the influence of culture in evaluation, leading to new evaluation approaches that account for the cultural considerations in which evaluations are situated. This scoping review sought to explore how evaluators understand culturally responsive evaluation and identify promising practices. A search of nine evaluation journals yielded 52 articles that were included in this review. Nearly two-thirds of the articles stated that community involvement was essential to culturally responsive evaluation. Power differentials were discussed in almost half of the articles, and the majority used participatory or collaborative approaches to community engagement. Findings from this review suggest that in culturally responsive evaluation, evaluators prioritize community involvement and have an awareness and attentiveness to power differentials. Yet, gaps exist in how culture and evaluation are defined and interpreted, and consequently, inconsistency in how culturally responsive evaluation is practiced.

"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.

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.

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.

Implementation and evaluation of a quality improvement project: carepaths for Early Psychosis Intervention Programmes in Northeastern Ontario.

AIM: This study aims to describe the implementation and evaluation of a quality improvement project, which aimed to standardize services and documentation across several district Early Psychosis Intervention Programmes in a rural region of Canada (Northeastern Ontario). METHOD: A Carepath for early psychosis intervention (EPI), which outlined best practice EPI care pathways, was implemented across 12 EPI programme sites. It was hypothesized that the proportion of best practice interventions provided across the district programmes would increase after the implementation of the Carepath initiative and that documentation would be standardized. Pre-Carepath and post-Carepath chart audits evaluated the provision and documentation of EPI best practices that were specified in the Carepath. RESULTS: Pre-audits and post-audits were completed on 110 and 108 client files, respectively. Chi-squared tests revealed that the post-audit frequencies were significantly higher than the pre-audit frequencies for two of the 12 EPI best practices that were evaluated (i.e. assessed impact on family and assessment of substance use). Standardization of documentation did not improve significantly. CONCLUSIONS: The results are discussed in the context of barriers to implementing and evaluating the Carepaths. Various individual and agency level barriers are identified (e.g. staff resistance, resources and agency documentation parameters), and strategies to overcome them are discussed. It is concluded that, despite barriers to implementation and evaluation, Carepaths can be a useful tool for standardizing services and documentation across a network of EPI programmes and guiding programme evaluation and quality assurance.

It takes a whole community: the contribution of rural hospice volunteers to whole-person palliative care.

Although volunteers are widely acknowledged as important members of the palliative care team, their unique contribution to whole-person care has not been well documented or theorized, especially in rural communities. We conducted a focused ethnography in a small rural community, asking key community informants about their understanding of the role of hospice volunteers with dying people and their families. Our results show that these volunteers inhabit a unique third culture of care that fuses elements of formal care with the informal visiting of friends and neighbours. Their role is shaped to a community context where dying is not a private medical event, but rather a whole-person-in-community event, and where care is offered as a natural expression of the interdependence and reciprocity that characterizes rural community life. Our results are a reminder that it takes an entire community to care for the dying, and that hospice volunteers are a crucial link in the network of care that allows people to die with dignity and quality of life.