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Adolescents and young adults (AYAs; 15-39 years) diagnosed with cancer have unique medical and psychosocial needs. These needs could be better addressed through research that is focused on the topics that matter most to them. However, there is currently no patient-oriented research agenda for AYA cancer in Canada. This manuscript describes the early development and project protocol for a priority-setting partnership (PSP) for establishing the top 10 research priorities for AYA cancer in Canada. This project follows the PSP methodology outlined by the James Lind Alliance (JLA) to engage patients, caregivers, and clinicians in research prioritization. The steps of a JLA PSP include establishing a steering group and project partners, gathering uncertainties, data processing and verifying uncertainties, interim priority setting, and a final priority setting workshop. The AYA cancer PSP will result in a top 10 list of research priorities identified by Canadian AYA patients, caregivers, and clinicians that will be published and shared broadly with the research community. The first steering group meeting was held in April 2023, and the project is ongoing. The establishment of a patient-oriented research agenda for AYA cancer will catalyze a long-term and impactful research focus and ultimately improve outcomes for AYA patients with cancer in Canada.
Assuntos
Neoplasias , Humanos , Adolescente , Canadá , Adulto Jovem , Adulto , Pesquisa , Feminino , Pesquisa Biomédica , Prioridades em Saúde , MasculinoRESUMO
Interest in AYA cancer care has increased globally over the recent past; however, most of this work disproportionately represents white, heterosexual, middle-income, educated, and able-bodied people. There is recognition in the literature that cancer care systems are not structured nor designed to adequately serve people of colour or other equity-denied groups, and the structural racism in the system prevents prevention, treatment, and delivery of care. This work seeks to examine structural racism and the ways that it permeates into the lived experiences of AYAs in their cancer care. This article represents the first phase of an 18-month, patient-oriented, Participatory Action Research project focused on cancer care for racialized AYAs that is situated within a broader program of research focused on transforming cancer care for AYAs. Semi-structured interviews were completed with 18 AYAs who self-identify as racialized, have lived experiences with cancer, and have received treatment in Canada. Following participant review of their transcripts, the transcripts were de-identified, and then coded by three separate authors. Five main themes were identified using thematic analysis, including the need to feel supported through experiences with (in)fertility, be heard and not dismissed, advocate for self and have others advocate for you, be in community, and resist compliance.
Assuntos
Neoplasias , Humanos , Adolescente , Adulto Jovem , Neoplasias/terapia , CanadáRESUMO
The field of health leadership is shifting rapidly, and there is an opportunity to learn with health leaders about what is needed to support health leadership education, research, and practice. In 2022, to augment student feedback and faculty praxis, Royal Roads University (RRU) conducted 12 virtual interviews with senior health system leaders across various settings to learn how health leaders can better respond to emerging and future leadership needs and priorities facing health systems. Findings from this study informed the development of a health-specific elective for the MAL-H program entitled Considerations for Health Systems Renewal. This elective explores the following topics that emerged from this research study: (1) an orientation to possibility; (2) emerging strategic HR concerns; (3) healthcare innovation; (4) relational and social systems leadership; (5) polarity thinking; (6) trauma-informed leadership; and (7) Canadian healthcare networks. In this article, we share our research process and findings to arrive at these recommendations.
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Place attachment is important for children and youth's disaster preparedness, experiences, recovery, and resilience, but most of the literature on place and disasters has focused on adults. Drawing on the community disaster risk reduction, recovery, and resilience literature as well as the literature on normative place attachment, children and youth's place-relevant disaster experiences are examined. Prior to a disaster, place attachments are postulated to enhance children and youth's disaster preparedness contributions and reinforce their pre-disaster resilience. During a disaster, damage of, and displacement from, places of importance can create significant emotional distress among children and youth. Following a disaster, pre-existing as well as new place ties can aid in their recovery and bolster their resilience moving forward. This framework enriches current theories of disaster recovery, resilience, and place attachment, and sets an agenda for future research.