Do clinical guidelines support person-centred care for women affected by dementia: A content analysis.

BACKGROUND: Dementia disproportionately affects women including persons living with dementia and caregivers. Person-centered care, rather than disease-focused, is recommended to improve care for affected persons including caregivers. General practitioners play a central role in dementia care but find it challenging due to inadequate training. The study aimed to assess if and how dementia guidelines provide clinicians with guidance on person-centred care for women affected by dementia. METHODS: We searched for publicly available English-language guidelines on the overall management of dementia in MEDLINE, EMBASE and the Guidelines International Network repository. We employed deductive and summative content analysis, and categorized person-centered care guideline content based on established frameworks, and conveyed our results using summary statistics, text, and tables. RESULTS: We reviewed 15 guidelines published from 2006 to 2020 in eight countries. Few (4, 23%) involved persons living with dementia or caregivers in guideline development. Regarding general person-centred care, guidelines mostly addressed the domains of exchange information (93%), share decisions (93%), enable self-management (93%) and address emotions (87%), while few offered content on manage uncertainty (33%) or foster a healing relationship (13%). Regarding dementia-specific person-centred care, most guidelines addressed intersectionality (tailoring care for diverse characteristics) (80%), but few included content on the domains of quality of life (67%), dignity (53%) or sex/gender issues (20%). Even when mentioned, the guidance was typically brief. We identified 32 general and 18 dementia-specific strategies to achieve person-centered care by compiling information from these guidelines. CONCLUSIONS: This study identified inconsistent and insufficient guideline content on person-centred care for women with dementia. Compiled strategies for achieving person-centred care could be used by developers to enhance existing and future dementia guidelines; and inform the development of policies or programs, education, tools for clinicians, and quality improvement measures for evaluating dementia care. Future research is crucial for promoting person-centred dementia care for women living with dementia.

Consensus on how to optimise patient/family engagement in hospital planning and improvement: a Delphi survey.

OBJECTIVE: Patient and family engagement (PE) in health service planning and improvement is widely advocated, yet little prior research offered guidance on how to optimise PE, particularly in hospitals. This study aimed to engage stakeholders in generating evidence-informed consensus on recommendations to optimise PE. DESIGN: We transformed PE processes and resources from prior research into recommendations that populated an online Delphi survey. SETTING AND PARTICIPANTS: Panellists included 58 persons with PE experience including: 22 patient/family advisors and 36 others (PE managers, clinicians, executives and researchers) in round 1 (100%) and 55 in round 2 (95%). OUTCOME MEASURES: Ratings of importance on a seven-point Likert scale of 48 strategies organised in domains: engagement approaches, strategies to integrate diverse perspectives, facilitators, strategies to champion engagement and hospital capacity for engagement. RESULTS: Of 50 recommendations, 80% or more of panellists prioritised 32 recommendations (27 in round 1, 5 in round 2) across 5 domains: 5 engagement approaches, 4 strategies to identify and integrate diverse patient/family advisor perspectives, 9 strategies to enable meaningful engagement, 9 strategies by which hospitals can champion PE and 5 elements of hospital capacity considered essential for supporting PE. There was high congruence in rating between patient/family advisors and healthcare professionals for all but six recommendations that were highly rated by patient/family advisors but not by others: capturing diverse perspectives, including a critical volume of advisors on committees/teams, prospectively monitoring PE, advocating for government funding of PE, including PE in healthcare worker job descriptions and sharing PE strategies across hospitals. CONCLUSIONS: Decision-makers (eg, health system policy-makers, hospitals executives and managers) can use these recommendations as a framework by which to plan and operationalise PE, or evaluate and improve PE in their own settings. Ongoing research is needed to monitor the uptake and impact of these recommendations on PE policy and practice.

How to implement person-centred care and support for dementia in outpatient and home/community settings: Scoping review.

BACKGROUND: Little prior research focused on person-centred care and support (PCCS) for dementia in home, community or outpatient care. We aimed to describe what constitutes PCCS, how to implement it, and considerations for women who comprise the majority of affected persons (with dementia, carers). METHODS: We conducted a scoping review by searching multiple databases from 2000 inclusive to June 7, 2020. We extracted data on study characteristics and PCCS approaches, evaluation, determinants or the impact of strategies to implement PCCS. We used summary statistics to report data and interpreted findings with an existing person-centred care framework. RESULTS: We included 22 studies with qualitative (55%) or quantitative/multiple methods design (45%) involving affected persons (50%), or healthcare workers (50%). Studies varied in how PCCS was conceptualized; 59% cited a PCC definition or framework. Affected persons and healthcare workers largely agreed on what constitutes PCCS (e.g. foster partnership, promote autonomy, support carers). In 4 studies that evaluated care, barriers of PCCS were reported at the affected person (e.g. family conflict), healthcare worker (e.g. lack of knowledge) and organizational (e.g. resource constraints) levels. Studies that evaluated strategies to implement PCCS approaches were largely targeted to healthcare workers, and showed that in-person inter-professional educational meetings yielded both perceived (e.g. improved engagement of affected persons) and observed (e.g. use of PCCS approaches) beneficial outcomes. Few studies reported results by gender or other intersectional factors, and none revealed if or how to tailor PCCS for women. This synthesis confirmed and elaborated the PCC framework, resulting in a Framework of PCCS for Dementia. CONCLUSION: Despite the paucity of research on PCCS for dementia, synthesis of knowledge from diverse studies into a Framework provides interim guidance for those planning or evaluating dementia services in outpatient, home or community settings. Further research is needed to elaborate the Framework, evaluate PCCS for dementia, explore determinants, and develop strategies to implement and scale-up PCCS approaches. Such studies should explore how to tailor PCCS needs and preferences based on input from persons with dementia, and by sex/gender and other intersectional factors such as ethnicity or culture.

Impacts of patient and family engagement in hospital planning and improvement: qualitative interviews with patient/family advisors and hospital staff.

BACKGROUND: Patient engagement (PE) in hospital planning and improvement is widespread, yet we lack evidence of its impact. We aimed to identify benefits and harms that could be used to assess the impact of hospital PE. METHODS: We interviewed hospital-affiliated persons involved in PE activities using a qualitative descriptive approach and inductive content analysis to derive themes. We interpreted themes by mapping to an existing framework of healthcare performance measures and reported themes with exemplar quotes. RESULTS: Participants included 38 patient/family advisors, PE managers and clinicians from 9 hospitals (2 < 100 beds, 4 100 + beds, 3 teaching). Benefits of PE activities included 9 impacts on the capacity of hospitals. PE activities involved patient/family advisors and clinicians/staff in developing and spreading new PE processes across hospital units or departments, and those involved became more adept and engaged. PE had beneficial effects on hospital structures/resources, clinician staff functions and processes, patient experience and patient outcomes. A total of 14 beneficial impacts of PE were identified across these domains. Few unintended or harmful impacts were identified: overextended patient/family advisors, patient/family advisor turnover and clinician frustration if PE slowed the pace of planning and improvement. CONCLUSIONS: The 23 self reported impacts were captured in a Framework of Impacts of Patient/Family Engagement on Hospital Planning and Improvement, which can be used by decision-makers to assess and allocate resources to hospital PE, and as the basis for ongoing research on the impacts of hospital PE and how to measure it.

The design and impact of culturally-safe community-based physical activity promotion for immigrant women: descriptive review.

BACKGROUND: Immigrant women have low rates of physical activity (PA), placing them at risk for chronic diseases. Some research suggests that strategies targeting this group must be culturally-safe and community-based. This study aimed to identify the design (i.e. characteristics) and impact of culturally-safe community-based PA promotion for immigrant women. METHODS: We conducted a descriptive review by searching MEDLINE, EMBASE, SPORTDiscus, CINAHL, SCOPUS, Cochrane Library and Joanna Briggs Institute Database of Systematic Reviews from inception to June 9, 2021 for English language studies that assessed community-based PA promotion strategies targeting adult immigrants and involved at least 50% women. We compiled findings in a preliminary context-mechanisms-outcomes conceptual framework. RESULTS: We included 13 studies published from 2004 to 2020. Three included women-only; the remainder included a median of 63% women (range 50 to 98%). Studies included immigrants from Brazil, Dominican, Columbian, Haiti, Mexico, China, Vietnam, Bangladesh, India, Pakistan, Somalia, Sudan and Turkey. All but one study (89%) significantly improved one or more outcomes: PA knowledge, PA participation and anthropometric measures (e.g. weight, BMI, blood pressure). Most (89%) strategies were multi-faceted: in-person group educational sessions reinforced by take-home educational material and/or follow-up reminder phone calls. Single strategies (e.g. mailed educational material, group educational session) also achieved beneficial outcomes. We identified 17 culturally-safe characteristics of PA promotion strategies: language of choice, based in community settings or organizations, led by lay health workers, reflected ethno-cultural linguistic expressions and PA norms, and recognized and offered solutions to barriers of PA. Findings were captured in a preliminary theory of how contextual factors (gender, intersectionality) and mechanism (culturally-safe PA promotion) may influence PA-related outcomes (PA knowledge, self-efficacy and participation; anthropometric measures, quality of life). CONCLUSIONS: This study revealed the characteristics of PA promotion strategies that significantly improved PA-related outcomes among immigrants. Given that few studies focused solely on immigrant women or reported sub-analyses, the conceptual framework generated by this study can be used in future research to more definitively establish the design and impact of culturally-safe, community-based PA promotion for immigrant women.

Organizational capacity for patient and family engagement in hospital planning and improvement: interviews with patient/family advisors, managers and clinicians.

BACKGROUND: Patient and family engagement (PE) in healthcare planning and improvement achieves beneficial outcomes and is widely advocated, but a lack of resources is a critical barrier. Little prior research studied how organizations support engagement specifically in hospitals. OBJECTIVE: We explored what constitutes hospital capacity for engagement. METHODS: We conducted descriptive qualitative interviews and complied with criteria for rigour and reporting in qualitative research. We interviewed patient/family advisors, engagement managers, clinicians and executives at hospitals with high engagement activity, asking them to describe essential resources or processes. We used content analysis and constant comparison to identify themes and corresponding quotes and interpreted findings by mapping themes to two existing frameworks of PE capacity not specific to hospitals. RESULTS: We interviewed 40 patient/family advisors, patient engagement managers, clinicians and corporate executives from nine hospitals (two < 100 beds, four 100 + beds, three teaching). Four over-arching themes about capacity considered essential included resources, training, organizational commitment and staff support. Views were similar across participant and hospital groups. Resources included funding and people dedicated to PE and technology to enable communication and collaboration. Training encompassed initial orientation and project-specific training for patient/family advisors and orientation for new staff and training for existing staff on how to engage with patient/family advisors. Organizational commitment included endorsement from the CEO and Board, commitment from staff and continuous evaluation and improvement. Staff support included words and actions that conveyed value for the role and input of patient/family advisors. The blended, non-hospital-specific framework captured all themes. Hospitals of all types varied in the availability of funding dedicated to PE. In particular, reimbursement of expenses and compensation for time and contributions were not provided to patient/family advisors. In addition to skilled engagement managers, the role of clinician or staff champions was viewed as essential. CONCLUSION: The findings build on prior research that largely focused on PE in individual clinical care or research or in primary care planning and improvement. The findings closely aligned with existing frameworks of organizational capacity for PE not specific to hospital settings, which suggests that hospitals could use the blended framework to plan, evaluate and improve their PE programs. Further research is needed to yield greater insight into how to promote and enable compensation for patient/family advisors and the role of clinician or staff champions in supporting PE.

Development, characteristics and impact of quality improvement casebooks: a scoping review.

BACKGROUND: Quality improvement (QI) casebooks, compilations of QI experiences, are one way to share experiential knowledge that healthcare policy-makers, managers and professionals can adapt to their own contexts. However, QI casebook use, characteristics and impact are unknown. We aimed to synthesize published research on QI prevalence, development, characteristics and impact. METHODS: We conducted a scoping review by searching MEDLINE, EMBASE, CINAHL and SCOPUS from inception to 4 February 2021. We extracted data on study characteristics and casebook definitions, development, characteristics (based on the WIDER [Workgroup for Intervention Development and Evaluation Research] framework) and impact. We reported findings using summary statistics, text and tables. RESULTS: We screened 2999 unique items and included five articles published in Canada from 2011 to 2020 describing three studies. Casebooks focused on promoting positive weight-related conversations with children and parents, coordinating primary care-specialist cancer management, and showcasing QI strategies for cancer management. All defined casebooks similarly described real-world experiences of developing and implementing QI strategies that others could learn from, emulate or adapt. In all studies, casebook development was a multistep, iterative, interdisciplinary process that engages stakeholders in identifying, creating and reviewing content. While casebooks differed in QI topic, level of application and scope, cases featured common elements: setting or context, QI strategy details, impacts achieved, and additional tips for implementing strategies. Cases were described with a blend of text, graphics and tools. One study evaluated casebook impact, and found that it enhanced self-efficacy and use of techniques to improve clinical care. Although details about casebook development and characteristics were sparse, we created a template of casebook characteristics, which others can use as the basis for developing or evaluating casebooks. CONCLUSION: Future research is needed to optimize methods for developing casebooks and to evaluate their impact. One approach is to assess how the many QI casebooks available online were developed. Casebooks should be evaluated alone or in combination with other interventions that support QI on a range of outcomes.

Medical student exposure to women's health concepts and practices: a content analysis of curriculum at Canadian medical schools.

BACKGROUND: Women's health (WH) includes a broad array of concerns and challenges that affect health across the lifespan. Considerable research shows that women continue to experience disparities in access to and quality of care. Apart from surveys of medical trainees and faculty, little research and none in Canada examined medical curriculum for WH. This study assessed how Canadian medical schools integrate WH in their curriculum. METHODS: We used deductive and summative content analysis to describe instances and the nature of WH topics in program and course descriptions that were publicly-available on web sites of Canadian medical schools. We reported results using summary statistics and text examples. We employed a framework, tested in our prior research, that included mention of women's health principles and practices relevant to any health concern or condition including factors (e.g. sex, gender, social determinants) that influence health, and access to or quality of care. RESULTS: We retrieved 1459 documents from 16 medical schools (median 49.5, range 16 to 301). Few mentioned WH (125, 8.6 %), and the quantity of mentions varied by school (range 0.0-37.5 %). Pre-clerkship course documents more frequently mentioned WH (61/374, 17.3 %, chi square 43.2, p < 0.00001) compared with clerkship course documents (58/1067, 5.4 %). Core course documents more frequently mentioned WH (72/542, 13.3 %, chi square 29.0, p < 0.00001) compared with elective course documents WH (47/899, 5.2 %). Overall, documents more frequently referred to the WH domain of social determinants of health (88, 70.4 %). Few documents addressed women's health (21, 16.8 %), sex or gender (19, 15.2 %), other considerations (15.2 %) or principles/components of women's health (2, 1.6 %). Most documents that mentioned WH provided little detail about what those concepts referred to or how to optimize WH. CONCLUSIONS: Based on program and course descriptions, WH may not be well-integrated at Canadian medical schools, and future physicians may not be consistently exposed to the full breadth of WH. This reveals opportunities for enhancing WH in the medical curriculum. Future research is needed to engage stakeholders including women in developing, implementing and evaluating competencies and corresponding curriculum that reflect the full range of WH concepts and practices.

Unclear if future physicians are learning about patient-centred care: Content analysis of curriculum at 16 medical schools.

PURPOSE: Given barriers of patient-centred care (PCC) among physicians and trainees, this study assessed how medical schools addressed PCC in curriculum. METHOD: The authors used content analysis to describe PCC in publicly-available curriculum documents of Canadian medical schools guided by McCormack's PCC Framework, and reported results using summary statistics and text examples. RESULTS: The authors retrieved 1459 documents from 16 medical schools (median 49.5, range 16-301). Few mentioned PCC (301, 21.2%), and even fewer thoroughly or accurately described PCC. Significantly more clerkship versus pre-clerkship (24.0% vs 12.6%, p < 0.00001), and elective compared with core course descriptions (24.7% vs 14.9%, p < 0.00001) mentioned PCC. The domain of foster a healing relationship was common (79.0%) compared with other domains: address concerns (16.5%), exchange information (14.9%), enable self-care (10.4%), share decisions (4.5%), and manage uncertainty (1.3%). CONCLUSIONS: Overall, few documents mentioned or described PCC or related concepts. This varied by school, and was more frequent in clerkship and elective courses, suggesting that student exposure may be brief and variable. Thus, it remains unclear if medical students are fully exposed to what PCC means and how to implement it. Future research is needed to confirm if PCC content in medical curriculum is lacking.

Approaches to optimize patient and family engagement in hospital planning and improvement: Qualitative interviews.

BACKGROUND: Patient engagement (PE) in health-care planning and improvement is a growing practice. We lack evidence-based guidance for PE, particularly in hospital settings. This study explored how to optimize PE in hospitals. METHODS: This study was based on qualitative interviews with individuals in various roles at hospitals with high PE capacity. We asked how patients were engaged, rationale for approaches chosen and solutions for key challenges. We identified themes using content analysis. RESULTS: Participants included 40 patient/family advisors, PE managers, clinicians and executives from 9 hospitals (2 < 100 beds, 4 100 + beds, 3 teaching). Hospitals most frequently employed collaboration (standing committees, project teams), followed by blended approaches (collaboration + consultation), and then consultation (surveys, interviews). Those using collaboration emphasized integrating perspectives into decisions; those using consultation emphasized capturing diverse perspectives. Strategies to support engagement included engaging diverse patients, prioritizing what benefits many, matching patients to projects, training patients and health-care workers, involving a critical volume of patients, requiring at least one patient for quorum, asking involved patients to review outputs, linking PE with the Board of Directors and championing PE by managers, staff and committee/team chairs. CONCLUSION: This research generated insight on concrete approaches and strategies that hospitals can use to optimize PE for planning and improvement. On-going research is needed to understand how to recruit diverse patients and best balance blended consultation/collaboration approaches. PATIENT OR PUBLIC CONTRIBUTION: Three patient research partners with hospital PE experience informed study objectives and interview questions.