RESUMO
BACKGROUND: Inuit experience the highest cancer mortality rates from lung cancer in the world with increasing rates of other cancers in addition to other significant health burdens. Inuit who live in remote areas must often travel thousands of kilometers to large urban centres in southern Canada and negotiate complex and sometimes unwelcoming health care systems. There is an urgent need to improve Inuit access to and use of health care. Our study objective was to understand the experiences of Inuit in Canada who travel from a remote to an urban setting for cancer care, and the impacts on their opportunities to participate in decisions during their journey to receive cancer care. METHODS: We are an interdisciplinary team of Steering Committee and researcher partners ("the team") from Inuit-led and/or -specific organizations that span Nunavut and the Ontario cancer health systems. Guided by Inuit societal values, we used an integrated knowledge translation (KT) approach with qualitative methods. We conducted semi-structured interviews with Inuit participants and used process mapping and thematic analysis. RESULTS: We mapped the journey to receive cancer care and related the findings of client (n = 8) and medical escort (n = 6) ("participant") interviews in four themes: 1) It is hard to take part in decisions about getting health care; 2) No one explains the decisions you will need to make; 3) There is a duty to make decisions that support family and community; 4) The lack of knowledge impacts opportunities to engage in decision making. Participants described themselves as directed, with little or no support, and seeking opportunities to collaborate with others on the journey to receive cancer care. CONCLUSIONS: We describe the journey to receive cancer care as a "decision chain" which can be described as a series of events that lead to receiving cancer care. We identify points in the decision chain that could better prepare Inuit to participate in decisions related to their cancer care. We propose that there are opportunities to build further health care system capacity to support Inuit and enable their participation in decisions related to their cancer care while upholding and incorporating Inuit knowledge.
Assuntos
Inuíte , Neoplasias , Canadá , Tomada de Decisões , Atenção à Saúde , Humanos , Neoplasias/terapia , Ontário , Pesquisa QualitativaRESUMO
BACKGROUND: Regionalization promotes planning and coordination of services across settings and providers to meet population needs. Despite the potential advantages of regionalization, no regional hospice palliative care program existed in Ontario, Canada, as of 2010. This paper describes the process and early results of the development of the first regional hospice palliative care program in Ontario. The various activities and processes undertaken and the formal agreements, policies and documents are described. METHODS: A participative approach, started in April 2009, was used. It brought together over 26 health service providers, including residential hospices, a palliative care unit, community and hospital specialist consultation teams, hospitals, community health and social service agencies (including nursing), individual health professionals, volunteers, patients and families. An extensive stakeholder and community vetting process was undertaken that included work groups (to explore key areas such as home care, the hospital sector, hospice and palliative care unit beds, provision of care in rural settings, e-health and education), a steering committee and input from over 320 individuals via e-mail and town-halls. A Transitional Leadership Group was elected to steer the implementation of the Regional Program over the summer of 2010. This group established the by-laws and details regarding the governance structure of the Regional Program, including its role, responsibilities, reporting structures and initial performance indicators that the Local Health Integration Network (LHIN) approved. RESULTS: The Regional Program was formally established in November 2010 with a competency-based Board of 14 elected members to oversee the program. Early work involved establishing standards and performance indicators for the different sectors and settings in the region, and identifying key clinical needs such as the establishment of more residential hospice capacity in Ottawa and a rural framework to ensure access for citizens in rural and remote regions. Challenges encountered are explored as are the process enablers and facilitators. The paper views the development and implementation process from the perspectives of several frameworks and models related to change management. CONCLUSIONS: Following on several initial achievements, the long term success of the Regional Program will depend on consolidating the early gains and demonstrating changes based on key measurable outcomes.
Assuntos
Cuidados Paliativos na Terminalidade da Vida/organização & administração , Cuidados Paliativos/organização & administração , Implementação de Plano de Saúde/organização & administração , Humanos , Ontário , Regionalização da Saúde/organização & administraçãoRESUMO
Patients, families, healthcare providers and funders face multiple comparable treatment options without knowing which provides the best quality of care. As a step towards improving this, the REthinking Clinical Trials (REaCT) pragmatic trials program started in 2014 to break down many of the traditional barriers to performing clinical trials. However, until other innovative methodologies become widely used, the impact of this program will remain limited. These innovations include the incorporation of near equivalence analyses and the incorporation of artificial intelligence (AI) into clinical trial design. Near equivalence analyses allow for the comparison of different treatments (drug and non-drug) using quality of life, toxicity, cost-effectiveness, and pharmacokinetic/pharmacodynamic data. AI offers unique opportunities to maximize the information gleaned from clinical trials, reduces sample size estimates, and can potentially "rescue" poorly accruing trials. On 2 May 2023, the first REaCT international symposium took place to connect clinicians and scientists, set goals and identify future avenues for investigator-led clinical trials. Here, we summarize the topics presented at this meeting to promote sharing and support other similarly motivated groups to learn and share their experiences.
Assuntos
Neoplasias , Qualidade de Vida , Humanos , Inteligência Artificial , Pessoal de Saúde , Neoplasias/terapia , Qualidade da Assistência à Saúde , Ensaios Clínicos como AssuntoRESUMO
BACKGROUND: Cancer among Indigenous people is increasing faster than overall Canadian rates. Lack of survivorship support, including screening and follow-up for recurrences, contributes to poor health outcomes and low 5-year survival rates. Historical trauma from colonization and lack of culturally safe and responsive healthcare has negatively affected Indigenous peoples' access to survivorship supports. Nurses are typically the sole practitioners of health services in rural and remote Indigenous communities and can enhance the development, implementation, and delivery of culturally safe survivorship supports. However, the implementation of culturally safe healthcare in Indigenous communities is not well developed.This is the third study in a larger program of research with an overarching goal to improve healthcare delivery and outcomes with Indigenous people in Canada. In this study, we will field test nurses' implementation of cancer survivorship care with Indigenous people in Ontario, Canada. METHODS: The study is a descriptive participatory mixed methods research design involving a systematic review, field testing implementation of cancer survivorship supports in two communities, focus groups, and qualitative interviews. Outcomes include feasibility of implementation, acceptability of the strategies, and perceived impact on healing and psychosocial support. DISCUSSION: Results will advance knowledge about implementing culturally safe cancer survivorship supports with Indigenous people in Ontario. A toolkit will be developed to inform nursing practices, programs, and policies to improve cancer survivorship supports and strategies with Indigenous people. Findings will inform a large-scale implementation study to reduce healthcare disadvantages and disparities within Indigenous communities across Canada.