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Objectives: This explorative cross-country qualitative study aims to describe experiences of receiving a dementia diagnosis and experiences of support following a diagnosis in Australia, Canada, the Netherlands and Poland. Method: Qualitative study using projective techniques during online focus groups, online and telephone interviews with people with dementia and caregivers. Results: Twenty-three people with dementia and 53 caregivers participated. Qualitative content analysis revealed five themes; (1) 'Coming to terms with dementia' helped people deal with complex emotions to move forward. (3) 'The social network as a source of support' and (4) 'The challenges and realities of formal support' and impacted 'Coming to terms with dementia'. (2) 'Navigating life with dementia as a caregiver' highlights caregiver burden and was impacted by (4) 'The challenges and realities of formal support'. People were (5) 'Self-caring and preparing for tomorrow' as they focused on maintaining current health whilst planning the future. Despite differences in healthcare and post-diagnostic support systems, there were more similarities across countries than differences. Conclusion: Across countries, formal support and support from friends and family are crucial for people with dementia and caregivers to come to terms with dementia and maintain carer wellbeing to ultimately live well with dementia. [ABSTRACT FROM AUTHOR]

Introduction: Growing evidence supports patient engagement (PE) in health implementation research to improve the quality, relevance and uptake of research. However, more guidance is needed to plan and operationalize PE before and throughout the research process. The aim of the study was to develop a logic model illustrating the causal links between context, resources, activities, outcomes and impact of PE in an implementation research programme. Methods: The Patient Engagement in Health Implementation Research Logic Model (hereafter the Logic Model) was developed using a descriptive qualitative design with a participatory approach, in the context of the PriCARE programme. This programme aims to implement and evaluate case management for individuals who frequently use healthcare services in primary care clinics across five Canadian provinces. Participant observation of team meetings was performed by all team members involved in the programme and in‐depth interviews were conducted by two external research assistants with team members (n = 22). A deductive thematic analysis using components of logic models as coding categories was conducted. Data were pooled in the first version of the Logic Model, which was refined in research team meetings with patient partners. The final version was validated by all team members. Results: The Logic Model highlights the importance of integrating PE into the project before its commencement, with appropriate support in terms of funding and time allocation. The governance structure and leadership of both principal investigators and patient partners have significant effects on PE activities and outcomes. As an empirical and standardized illustration that facilitates a shared understanding, the Logic Model provides guidance for maximizing the impact of patient partnership in various contexts for research, patients, providers and health care. Conclusion: The Logic Model will help academic researchers, decision makers and patient partners plan, operationalize, and assess PE in implementation research for optimal outcomes. Patient or Public Contribution: Patient partners from the PriCARE research programme contributed to developing the research objectives and designing, developing and validating data collection tools, producing data, developing and validating the Logic Model and reviewing the manuscript. [ABSTRACT FROM AUTHOR]

Interprofessional education (IPE) allows students in health professional programs to practice providing collaborative patient care before graduating. Understanding the perceptions and experiences of health care professionals' IPE received prior to entering the workforce is key for improving IPE programs. This study investigated participants' post-licensure interprofessional collaboration (IPC) experiences, how IPE helped prepare them for IPC post-licensure, their perceptions of the IPE they received as students, and their suggestions for improving IPE. This qualitative descriptive study included 20 healthcare workers from seven professions who graduated from two of three co-located post-secondary educational institutions. Data were collected using semi-structured interviews, which were audiotaped and transcribed verbatim. Inductive thematic analysis revealed five themes and six sub-themes: (a) Quality of care; (b) Role clarification; (c) Interpersonal skills (sub-themes: communication and self-confidence); (d) Co-location; and (e) Need for IPE improvements (sub-themes: additional IPE exposures, shadowing experiences, mandatory IPE, and informal peer learning). These findings appear to reinforce the perception that pre-licensure IPE may support the development of skills for IPC among practicing health professionals. [ABSTRACT FROM AUTHOR]

Background: Studies have highlighted common challenges and barriers to patient engagement in research, but most were based on patient partners' or academic researchers' experiences. A better understanding of how both groups differentially experience their partnership could help identify strategies to improve collaboration in patient engagement research. Aim: This study aimed to describe and compare patient partners' and academic researchers' experiences in patient engagement research. Methods: Based on a participatory approach, a descriptive qualitative study was conducted with patient partners and academic researchers who are involved in the PriCARE research programme in primary health care to examine their experience of patient engagement. Individual semi‐structured interviews with patient partners (n = 7) and academic researchers (n = 15) were conducted. Academic researchers' interview verbatims, deidentified patient partners' summaries of their interviews and summaries of meetings with patient partners were analysed using inductive thematic analysis in collaboration with patient partners. Results: Patient partners and academic researchers' experiences with patient engagement are captured within four themes: (1) evolving relationships; (2) creating an environment that fosters patient engagement; (3) striking a balance; and (4) impact and value of patient engagement. Evolving relationships refers to how partnerships grew and improved over time with an acceptance of tensions and willingness to move beyond them, two‐way communication and leadership of key team members. Creating an environment that fosters patient engagement requires appropriate structural support, such as clear descriptions of patient partner roles; adequate training for all team members; institutional guidance on patient engagement; regular and appropriate translation services; and financial assistance. For patient partners and academic researchers, striking a balance referred to the challenge of reconciling patient partners' interests and established research practices. Finally, both groups recognized the value and positive impact of patient engagement in the programme in terms of improving the relevance of research and the applicability of results. While patient partners and academic researchers identified similar challenges and strategies, their experiences of patient engagement differed according to their own backgrounds, motives and expectations. Conclusion: Both patient partners and academic researchers highlighted the importance of finding a balance between providing structure or guidelines for patient engagement, while allowing for flexibility along the way. Patient or Public Contribution: Patient partners from the PriCARE research programme were involved in the following aspects of the current study: (1) development of the research objectives; (2) planning of the research design; (3) development and validation of data collection tools (i.e., interview guides); (4) production of data (i.e., acted as interviewees); (5) validation of data analysis tools (code book); (6) analysis of qualitative data; and (7) drafting of the manuscript and contributing to other knowledge translation activities, such as conference presentations and the creation of a short animated video. [ABSTRACT FROM AUTHOR]

Background: Caring for a youth with complex care needs (CCN) who is transitioning from paediatric to adult healthcare can produce many challenges. For example, caregivers must often manage their youth's care at home, coordinate care and advocate for their youth. Experiences of fragmented and uncoordinated care often result in caregivers feeling ill‐prepared and uncertain about the transition process. The current study explores caregiver experiences with the transition from paediatric to adult healthcare for youth with CCN in a semi‐rural Canadian province. Methods: This study used a cross‐sectional qualitative descriptive design, involving semi‐structured interviews with caregivers of youth with CCN who were preparing for, in the process of, or completed a transition from paediatric to adult healthcare within the province of New Brunswick, Canada. Thematic analysis focused on describing caregiver experiences with the transition from paediatric to adult healthcare. Results: Seventeen caregivers completed interviews for this study. Four key themes emerged relating to caregiver experiences with the transition from paediatric to adult healthcare for these youth: (1) lack of caregiver support, (2) lack of continuity of care, (3) need for collaborative care and (4) difficulty navigating transition. Conclusion: There is a clear need to address the challenges experienced by youth with CCN and their caregivers throughout the transition from paediatric to adult healthcare. An effective transition strategy should involve early and coordinated planning between the paediatric and adult care team; continued communication across the care team throughout the transition process; and coordination among health, education and social services. [ABSTRACT FROM AUTHOR]

Objectives: To explore the roles of patient navigators in different settings and situations for various patient populations and to understand the rationale for implementing lay and professional models of patient navigation in a Canadian context. Methods: A qualitative descriptive design was applied, using interviews with 10 patient navigators from eight Canadian provinces, and Braun and Clarke's six phases of thematic analysis to guide the analysis of interview transcripts. Results: Findings indicate that a patient navigator's personality and experience (personal and work-related) may be more important than their specific designation (i.e. lay or professional). Conclusions: Lay and professional navigators in Canada appear to be well suited to provide navigational services across populations. This study has the potential to inform future research, policy, and the delivery of navigation programmes in Canada. [ABSTRACT FROM AUTHOR]

Objectives: (1) To provide other organizations with useful information when implementing paediatric navigation programs and (2) to inform the implementation of a navigation care centre in New Brunswick for children with complex health conditions. Methods: This environmental scan consisted of a literature review of published and grey literature for paediatric patient navigation programs across Canada. Additional programs were found following discussions with program coordinators and navigators. Interviews were conducted with key staff from each program and included questions related to patient condition; target population and location; method delivery; navigator background; and navigator roles. Data analysis included analysis of interviews and identification of common themes across the different programs. Results: We interviewed staff from 19 paediatric navigation programs across Canada. Programs varied across a number of different themes, including: condition and disease type, program location (e.g., hospital or clinic), navigator background (e.g., registered nurse or peer/lay navigator) and method of delivery (e.g., phone or face-to-face). Overall, navigator roles are similar across all programs, including advocacy, education, support and assistance in accessing resources from both within and outside the health care system. Discussion: This scan offers a road map of Canadian paediatric navigation programs. Knowledge learned from this scan will inform stakeholders who are either involved in the delivery of paediatric patient navigation programs or planning to implement such a program. Specifically, our scan informed the development of a navigation centre for children with complex health conditions in New Brunswick. [ABSTRACT FROM AUTHOR]