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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: Adults with cystic fibrosis (CF) must continuously manage their condition, while working for a living, and want a normal life. Adherence rates to treatments/medications are less than optimal. Existing theory offers little to explain adherence rates. The purpose of this study was to develop a theory to further the understanding of how people with CF manage their condition in an adherence-driven health care system. METHODS: Constructivist Grounded Theory methodology was used to conduct 27 semistructured interviews with adults with CF, family members, and health care providers. Data collection and analysis were simultaneous, using constant comparative methods, initial and focused coding, and category identification and reduction to develop a theory. RESULTS: Doing what works to balance life and CF is the theory generated from this study. The main concern of participants was to be seen as normal. The theory depicts what participants with CF and their family members do about their concerns and involves 4 interrelated processes: working overtime, receiving support, passing as normal, and facing disease progression. CONCLUSION: Participants did not relate to the term nonadherent; rather they described working overtime to manage CF, to work, and to have a normal life. Health care provider and researcher perspectives on adherence differ from those of people with CF. Engaging adults with CF and health care providers in a dialogue in which expectations are shared may lead to individualized treatment regimens that work, because adults with CF will do what works. [ABSTRACT FROM AUTHOR]

Background: Patient safety is a national and international priority with medication safety earmarked as both a prevalent and high-risk area of concern. To date, medication safety research has focused overwhelmingly on institutional based care provided by paid healthcare professionals, which often has little applicability to the home care setting. This critical gap in our current understanding of medication safety in the home care sector is particularly evident with the elderly who often manage more than one chronic illness and a complex palette of medications, along with other care needs. This study addresses the medication management issues faced by seniors with chronic illnesses, their family, caregivers, and paid providers within Canadian publicly funded home care programs in Alberta (AB), Ontario (ON), Quebec (QC) and Nova Scotia (NS).Methods: Informed by a socio-ecological perspective, this study utilized Interpretive Description (ID) methodology and participatory photographic methods to capture and analyze a range of visual and textual data. Three successive phases of data collection and analysis were conducted in a concurrent, iterative fashion in eight urban and/or rural households in each province. A total of 94 participants (i.e., seniors receiving home care services, their family/caregivers, and paid providers) were interviewed individually. In addition, 69 providers took part in focus groups. Analysis was iterative and concurrent with data collection in that each interview was compared with subsequent interviews for converging as well as diverging patterns.Results: Six patterns were identified that provide a rich portrayal of the complexity of medication management safety in home care: vulnerabilities that impact the safe management and storage of medication, sustaining adequate supports, degrees of shared accountability for care, systems of variable effectiveness, poly-literacy required to navigate the system, and systemic challenges to maintaining medication safety in the home.Conclusions: There is a need for policy makers, health system leaders, care providers, researchers, and educators to work with home care clients and caregivers on three key messages for improvement: adapt care delivery models to the home care landscape; develop a palette of user-centered tools to support medication safety in the home; and strengthen health systems integration. [ABSTRACT FROM AUTHOR]

Objectives The objectives of this study were to document the incidence rate and types of adverse events (AEs) among home care (HC) clients in Canada; identify factors contributing to these AEs; and determine to what extent evidence of completion of incident reports were documented in charts where AEs were found. Methods This was a retrospective cohort study based on expert chart review of a random sample of 1200 charts of clients discharged in fiscal year 2009-2010 from publicly funded HC programmes in Manitoba, Quebec and Nova Scotia, Canada. Results The results show that 4.2% (95% CI 3.0% to 5.4%) of HC patients discharged in a 12-month period experienced an AE. Adjusting to account for clients with lengths of stay in HC of less than 1 year, the AE incidence rate per client-year was 10.1% (95% CI 8.4% to 11.8%); 56% of AEs were judged preventable. The most frequent AEs were injuries from falls, wound infections, psychosocial, behavioural or mental health problems and adverse outcomes from medication errors. More comorbid conditions (OR 1.15; 95% CI 1.05 to 1.26) and a lower instrumental activities of daily living score (OR 1.54; 95% CI 1.16 to 2.04) were associated with a higher risk of experiencing an AE. Clients' decisions or actions contributed to 48.4% of AEs, informal caregivers 20.4% of AEs, and healthcare personnel 46.2% of AEs. Only 17.3% of charts with an AE contained documentation that indicated an incident report was completed, while 4.8% of charts without an AE had such documentation. Conclusions Client safety is an important issue in HC, as it is in institutionalised care. HC includes the planned delivery of self-care by clients and care provision by family, friends and other individuals often described as 'informal' caregivers. As clients and these caregivers can contribute to the occurrence of AEs, their involvement in the delivery of healthcare interventions at home must be considered when planning strategies to improve HC safety. [ABSTRACT FROM AUTHOR]