Strategies for involving patients and the public in scaling initiatives in health and social services: A scoping review.

BACKGROUND: Scaling in health and social services (HSS) aims to increase the intended impact of proven effective interventions. Patient and public involvement (PPI) is critical for ensuring that scaling beneficiaries' interests are served. We aimed to identify PPI strategies and their characteristics in the science and practice of scaling in HSS. METHODS: In this scoping review, we included any scaling initiative in HSS that used PPI strategies and reported PPI methods and outcomes. We searched electronic databases (e.g., Medline) from inception to 5 February 2024, and grey literature (e.g., Google). Paired reviewers independently selected and extracted eligible reports. A narrative synthesis was performed and we used the PRISMA for Scoping Reviews and the Guidance for Reporting Involvement of Patients and the Public (GRIPP2). FINDINGS: We included 110 unique reports out of 24,579 records. In the past 5 years, the evidence on PPI in scaling has increased faster than in any previous period. We found 236 mutually nonexclusive PPI strategies among 120 scaling initiatives. Twenty-four initiatives did not target a specific country; but most of those that did so (n = 96) occurred in higher-income countries (n = 51). Community-based primary health care was the most frequent level of care (n = 103). Mostly, patients and the public were involved throughout all scaling phases (n = 46) and throughout the continuum of collaboration (n = 45); the most frequently reported ethical lens regarding the rationale for PPI was consequentialist-utilitarian (n = 96). Few papers reported PPI recruitment processes (n = 31) or incentives used (n = 18). PPI strategies occurred mostly in direct care (n = 88). Patient and public education was the PPI strategy most reported (n = 31), followed by population consultations (n = 30). CONCLUSIONS: PPI in scaling is increasing in HSS. Further investigation is needed to better document the PPI experience in scaling and ensure that it occurs in a meaningful and equitable way. PATIENT AND PUBLIC CONTRIBUTION: Two patients were involved in this review. They shared decisions on review questions, data collection instruments, protocol design, and findings dissemination. REVIEW REGISTRATION: Open Science Framework on 19 August 2020 (https://osf.io/zqpx7/).

The Impact of Advance Care Planning on Healthcare Professionals' Well-being: A Systematic Review.

CONTEXT: Advance care planning (ACP) improves care for patients with chronic illnesses and reduces family stress. However, the impact of ACP interventions on healthcare professionals' well-being remains unknown. OBJECTIVE: To systematically review the literature evaluating the impact of ACP interventions on healthcare professionals' well-being. METHODS: We followed the Joanna Briggs Institute methodology for systematic reviews and registered the protocol in PROSPERO (CRD42022346354). We included primary studies in all languages that assessed the well-being of healthcare professionals in ACP interventions. We excluded any studies on ACP in psychiatric care and in palliative care that did not address goals of care. Searches were conducted on April 4, 2022, and March 6, 2023 in Embase, CINAHL, Web of Science, and PubMed. We used the Mixed Methods Appraisal Tool for quality analysis. We present results as a narrative synthesis because of their heterogeneity. RESULTS: We included 21 articles published in English between 1997 and 2021 with 17 published after 2019. All were conducted in high-income countries, and they involved a total of 1278 participants. Three reported an interprofessional intervention and two included patient partners. Studies had significant methodological flaws but most reported that ACP had a possible positive impact on healthcare professionals' well-being. CONCLUSION: This review is the first to explore the impact of ACP interventions on healthcare professionals' well-being. ACP interventions appear to have a positive impact, but high-quality studies are scarce. Further research is needed, particularly using more rigorous and systematic methods to implement interventions and report results.

Predictors of Decision Regret among Caregivers of Older Canadians Receiving Home Care: A Cross-Sectional Online Survey.

Background. In Canada, caregivers of older adults receiving home care face difficult decisions that may lead to decision regret. We assessed difficult decisions and decision regret among caregivers of older adults receiving home care services and factors associated with decision regret. Methods. From March 13 to 30, 2020, at the outbreak of the COVID-19 pandemic, we conducted an online survey with caregivers of older adults receiving home care in the 10 Canadian provinces. We distributed a self-administered questionnaire through Canada's largest and most representative private online panel. We identified types of difficult health-related decisions faced in the past year and their frequency and evaluated decision regret using the Decision Regret Scale (DRS), scored from 0 to 100. We performed descriptive statistics as well as bivariable and multivariable linear regression to identify factors predicting decision regret. Results. Among 932 participants, the mean age was 42.2 y (SD = 15.6 y), and 58.4% were male. The most frequently reported difficult decisions were regarding housing and safety (75.1%). The mean DRS score was 28.8/100 (SD = 8.6). Factors associated with less decision regret included higher caregiver age, involvement of other family members in the decision-making process, wanting to receive information about the options, and considering organizations interested in the decision topic and health care professionals as trustworthy sources of information (all P < 0.001). Factors associated with more decision regret included mismatch between the caregiver's preferred option and the decision made, the involvement of spouses in the decision-making process, higher decisional conflict, and higher burden of care (all P < 0.001). Discussion. Decisions about housing and safety were the difficult decisions most frequently encountered by caregivers of older adults in this survey. Our results will inform future decision support interventions. Highlights: This is one of the first studies to assess decision regret among caregivers of older adults receiving home and community care services and to identify their most frequent difficult decisions.Difficult decisions were most frequently about housing and safety. Most caregivers of older adults in all 10 provinces of Canada experienced decision regret.Factors associated with less decision regret included higher caregiver age, the involvement of other family members in the decision-making process, wanting to receive information about the options, considering organizations interested in the decision topic, and health care professionals as trustworthy sources of information. Factors associated with more decision regret included mismatch between the caregiver's preferred option and the decision made, the involvement of spouses in the decision-making process, higher decisional conflict, and higher burden of care.

Strategies for involving patients and the public in scaling-up initiatives in health and social services: protocol for a scoping review and Delphi survey.

BACKGROUND: The scale-up of evidence-based innovations is required to reduce waste and inequities in health and social services (HSS). However, it often tends to be a top-down process initiated by policy makers, and the values of the intended beneficiaries are forgotten. Involving multiple stakeholders including patients and the public in the scaling-up process is thus essential but highly complex. We propose to identify relevant strategies for meaningfully and equitably involving patients and the public in the science and practice of scaling up in HSS. METHODS: We will adapt our overall method from the RAND/UCLA Appropriateness Method. Following this, we will perform a two-prong study design (knowledge synthesis and Delphi study) grounded in an integrated knowledge translation approach. This approach involves extensive participation of a network of stakeholders interested in patient and public involvement (PPI) in scaling up and a multidisciplinary steering committee. We will conduct a systematic scoping review following the methodology recommended in the Joanna Briggs Institute Reviewers Manual. We will use the following eligibility criteria: (1) participants-any stakeholder involved in creating or testing a strategy for PPI; (2) intervention-any PPI strategy proposed for scaling-up initiatives; (3) comparator-no restriction; (4) outcomes: any process or outcome metrics related to PPI; and (5) setting-HSS. We will search electronic databases (e.g., Medline, Web of Science, Sociological Abstract) from inception onwards, hand search relevant websites, screen the reference lists of included records, and consult experts in the field. Two reviewers will independently select and extract eligible studies. We will summarize data quantitatively and qualitatively and report results using the PRISMA extension for Scoping Reviews (PRISMA-ScR) checklist. We will conduct an online Delphi survey to achieve consensus on the relevant strategies for PPI in scaling-up initiatives in HSS. Participants will include stakeholders from low-, middle-, and high-income countries. We anticipate that three rounds will allow an acceptable degree of agreement on research priorities. DISCUSSION: Our findings will advance understanding of how to meaningfully and equitably involve patients and the public in scaling-up initiatives for sustainable HSS. SYSTEMATIC REVIEW REGISTRATION: We registered this protocol with the Open Science Framework on August 19, 2020 ( https://osf.io/zqpx7/ ).