Search

Cognitive deficits are common among stroke survivors and impact their functional independence. Despite the prevalence of cognitive deficits after stroke, cognitive function is largely overlooked in post-stroke care. The aim of this qualitative study was to explore the experiences of individuals living with post-stroke cognitive changes to understand the impact of these changes on their daily lives. Semi-structured interviews were conducted with a purposeful sample of thirteen community-dwelling adults 50 years and older with chronic stroke who self-identified cognitive changes post-stroke. Interviews were transcribed and an inductive thematic analysis was completed. Four key themes were identified: 1) inability to maintain everyday activities; 2) experiencing emotional responses to living with post-stroke cognitive changes; 3) a shrinking social world and; 4) seeking care for cognitive health post-stroke. Post-stroke cognitive changes were described by participants as a driving force behind negative shifts in their daily lives, emotional health, and social connections after stroke. Despite seeking care for their post-stroke cognitive changes, many participants were unable to find support in mainstream healthcare. There is a demonstrated need to further elucidate the gaps in care for post-stroke cognitive deficits and implement community interventions targeting cognitive health post-stroke. Clinicians should consider how cognitive changes post-stroke may affect daily life and the uptake in support services to help improve accessibility and alter the delivery of care accordingly. Clinicians should regularly complete cognitive screenings among their clients living with stroke and probe them for the effects of cognitive deficits within their daily life. There is a demonstrated need for community interventions that target cognitive health for individuals living with stroke, and clinicians should consider advocating for and spearheading such programs within the community. [ABSTRACT FROM AUTHOR]

Introduction: Public and health professional involvement (PHPI) is essential in healthcare research yet uncommonly integrated into systematic reviews. We incorporated and evaluated PHPI in a mixed methods review of occupational therapy for self-management of rheumatoid arthritis (RA). Methods: Public partners were living with or caring for someone with RA. Our steering group comprised two public, two professionals (one occupational therapist, one rheumatologist), and one reviewer who planned the review's PHPI (August 2021). Involvement was evaluated from public and health professional (PHP) perspectives using a survey and workshops (August–October 2022) exploring reasons for involvement, challenges and learning opportunities. Results: Alongside the steering group, 16 public and 6 professionals were involved throughout the review. Five public refined the search strategy, with three assisting in subsequent review activities. PHPs helped interpret findings during three public (n = 12) and one professional workshop (n = 4). Three occupational therapists and one public co-authored (ED) publications. In evaluation, PHPs felt valued and that their involvement was well-integrated. The researchers underestimated the time required for communicating and conducting PHPI in the review. Conclusions: PHPI is worthwhile, feasible and can be integrated within a systematic review. PHP partners considered participation valuable; researchers must prioritise time to prepare and communicate PHPI activities. [ABSTRACT FROM AUTHOR]

Objective: To determine the impact of occupational therapy (OT) on the self‐management of function, pain, fatigue, and lived experience for people living with rheumatoid arthritis (RA). Methods: Five databases and gray literature were searched up to June 30, 2022. Three reviewers screened titles and abstracts, with two independently extracting and assessing full texts using the Cochrane risk of bias (quantitative) and Critical Appraisal Skills Programme (qualitative) tools to assess study quality. Studies were categorized into four intervention types. Grading of Recommendations, Assessment, Development and Evaluations (GRADE) (quantitative) and GRADE‐ Confidence in Evidence from Reviews of Qualitative research (qualitative) were used to assess the quality of evidence for each intervention type. Results: Of 39 eligible papers, 29 were quantitative (n = 2,029), 4 qualitative (n = 50), and 6 mixed methods (n = 896). Good evidence supports patient education and behavior change programs for improving pain and function, particularly group sessions of joint protection education, but these do not translate to long‐term improvements for RA (>24 months). Comprehensive OT had mixed evidence (limited to home OT and an arthritis gloves program), whereas limited evidence was available for qualitative insights, splints and assistive devices, and self‐management for fatigue. Conclusion: Although patient education is promising for self‐managing RA, no strong evidence was found to support OT programs for self‐managing fatigue or patient experience and long‐term effectiveness. More research is required on lived experience, and the long‐term efficacy of self‐management approaches incorporating OT, particularly timing programs to meet the individual's conditional needs (i.e., early or established RA) to build on the few studies to date. [ABSTRACT FROM AUTHOR]

Objectives: Incorporating the perspectives of patients and public into the conduct of research has the potential to make scientific research more democratic. This paper explores how being a patient partner on an arthritis patient advisory board shapes the patienthood of a person living with arthritis. Methods: An analysis was undertaken of the narratives of 22 patient research partners interviewed about their experiences on the Arthritis Patient Advisory Board (APAB), based in Vancouver, Canada. Results: Participants' motivations to become involved in APAB stemmed largely from their desire to change their relationship with their condition. APAB was a living collective project in which participants invested their hope, both for their own lives as patients and for others with the disease. Conclusions: Our findings highlight how the journeys of patient partners connect and integrate seemingly disparate conceptions of what it means to be a patient. One's experience as a clinical 'patient' transforms into the broader notion of civic patienthood. [ABSTRACT FROM AUTHOR]

Background: Occupational therapists can support people with rheumatoid arthritis to self‐manage their disease symptoms and engage in daily activities. This protocol reports a review to broaden understanding of what is known about the role of occupational therapy in the self‐management of rheumatoid arthritis. Methods: Studies involving adults with rheumatoid arthritis, having participated in self‐management involving occupational therapy, will be included. Patient involvement will help develop the search strategy by identifying patient‐centred interventions and outcomes to complement those identified by researchers. An electronic search will be performed using several bibliographic databases, including grey literature from subject‐specific, health‐related, and social care databases. Searches will run from the database inception until the date that the search is conducted (December 2021–May 2022). Retrieved studies will be de‐duplicated, and the remaining titles and abstracts will be screened by three reviewers. Full texts of all eligible studies will be independently reviewed by the reviewers to select papers for data extraction and quality assessment. Outcomes are function, pain, fatigue and lived experience. For quantitative studies, data will be synthesised using descriptive statistics in text and tables, whereas for qualitative studies, data will be synthesised using thematic synthesis. Discussion: This review will synthesise current evidence on how occupational therapy can help the self‐management of rheumatoid arthritis. It will include evidence of best practice, including advice, education and training provided by occupational therapists. These findings can inform future research and the selection of strategies to promote quality of life for people with rheumatoid arthritis. Systematic review registration: PROSPERO CRD42022302205 [ABSTRACT FROM AUTHOR]

Background: Processes of the patient and public involvement (PPI) in health research shifted quickly during 2020. Faced with large‐scale issues, such as the COVID‐19 pandemic, the need to adapt processes of PPI to uphold commitments to nurturing the practice of 'nothing about us without us' in research has been urgent and profound. We describe how processes of PPI in research on patient‐oriented methods of knowledge translation and implementation science were adapted by four teams in a Canadian setting. Methods: As part of an ongoing quality improvement self‐study to enhance PPI within these teams, team members shared their experiences of PPI in the context of this pivotal year during interviews and facilitated discussions. Drawing on these experiences, we outline challenges and reflections for adapting processes of PPI in health research on methods in times of urgency, conflict and fast‐moving change. Discussion: Our reflections offer insight into common issues encountered across teams that may be amplified during times of rapid change, including handling change and uncertainty, sustaining relationship‐building and hearing differing perspectives in processes of PPI. Conclusion: These learnings present an opportunity to help others active in or planning patient‐oriented methods research to reflect on the changing nature of PPI and how to adapt PPI processes in response to turbulent situations in the future. Patient and Public Contributions: The key reflections presented draw heavily from perspectives shared by eight patient and public partners in interviews and facilitated discussions (the conduct and analysis of data in the quality improvement self‐study). [ABSTRACT FROM AUTHOR]

Objectives: This study aimed to explore the impact of the coronavirus disease 2019 (COVID‐19) pandemic on self‐care of individuals living with rheumatoid arthritis (RA). Methods: Guided by a constructivist, qualitative design, we conducted one‐to‐one in‐depth telephone interviews between March and October 2020 with participants with RA purposively sampled for maximum variation in age, sex and education, who were participating in one of two ongoing randomized‐controlled trials. An inductive, reflexive thematic analysis approach was used. Results: Twenty‐six participants (aged 27–73 years; 23 females) in British Columbia, Canada were interviewed. We identified three themes: (1) Adapting to maintain self‐care describes how participants took measures to continue self‐care activities while preventing virus transmissions. While spending more time at home, some participants reported improved self‐care. (2) Managing emotions describes resilience‐building strategies such as keeping perspective, positive reframing and avoiding negative thoughts. Participants described both letting go and maintaining a sense of control to accommodate difficulties and emotional responses. (3) Changing communication with health professionals outlined positive experiences of remote consultations with health professionals, particularly if good relationships had been established prepandemic. Conclusion: The insights gained may inform clinicians and researchers on ways to support the self‐care strategies of individuals with RA and other chronic illnesses during and after the COVID‐19 pandemic. The findings reveal opportunities to further examine remote consultations to optimize patient engagement and care. Patient or Public Contribution: This project is jointly designed and conducted with patient partners in British Columbia, Canada. Patient partners across the United Kingdom also played in a key role in providing interpretations of themes during data analysis. [ABSTRACT FROM AUTHOR]

Objective To better understand, based on patient partners' experiences, benefits and risks in patient partner-researcher relationships in a health research setting. Design Qualitative interviews with thematic analysis informed by a relational ethics lens. Setting A multidisciplinary health research centre in Vancouver, Canada. This study was codeveloped by patient partners and researchers at the centre. Participants 22 people living with arthritis, with experience as members of a patient advisory board at the research centre from 1 month to 10 years. Results We identified three main themes: (1) Being Heard: Participants had experienced uncomfortable emotions (eg, feelings of insecurity) in their relationships with researchers. The discomfort, however, was minimised by the demonstration of mutual respect in their interactions. Specifically, participants valued environments without a hierarchy between patient partners and researchers, where contributions of each party were considered equally important, and where patients' voices were heard; (2) Cobuilding social relations: Participants valued building social relations with researchers beyond their expected interactions as partners in research and (3) Adding another spinning plate to an already busy life: Participants valued relationships with researchers who had cocreated environments that minimised the risks of physical and emotional impacts (eg, fatigue, stress, guilt) on them while juggling multiple obligations, priorities and their health. Conclusions Findings provide valuable insights to guide relationship building between patient partners and researchers. Informed by a relational ethics lens, these findings are a critical step in supporting an ethically sound practice of patient engagement in research that prioritises patients' perspectives. [ABSTRACT FROM AUTHOR]