Empowering Ontarios long-term care residents to shape the place they call home: a codesign protocol

Introduction

Long-term care (LTC) homes, commonly known as nursing homes or care homes, are places where people receive 24-hour care and support with activities of daily living.1 Nearly 200 000 Canadians live in over 2000 LTC homes across the country.2 3 In the province of Ontario, approximately 80 000 people reside in 626 LTC homes.4 Most LTC residents are older adults with complex health needs, including sensory, mobility and cognitive impairments.4 5

LTC homes were built and modelled on an acute care system, not a ‘home’ or social model.6 Residents are not typically regarded as contributors; rather, they are seen as vulnerable, passive recipients of care. Despite efforts to formalise and protect the residents’ roles in their LTC homes, the negative effects of ageism and ableism persist. Engaging LTC residents will inform education, policy, service delivery and governance within LTC homes and the broader healthcare system. Yet, little is known about effective approaches to engagement of this population. Reviews of research have examined quality improvement in LTC homes7 8 or ways LTC residents can engage in research9 and health practice guideline development.10 To our knowledge, previous reviews have not addressed the role of residents in the organisational design and governance of their LTC homes. This includes strategies and contextual factors that enable engagement, and outcomes or experiences for LTC residents and homes.

We are interested in exploring resident engagement at the home level and as described in Carman et al’s patient engagement framework (table 1), such as where LTC residents might contribute as advisors, committee members or other similar capacities (ie, involvement) or residents colead LTC home committees (ie, partnership).11 Three key factors motivate our focus on resident engagement in organisational design and governance. First, residents identify engagement as a priority. Previous research reports that LTC residents seek opportunities for meaningful activity, including making contributions to their LTC homes12 and communities. These opportunities for engagement and autonomy encompass a critical domain in their quality of life.13 Second, the proposed project is timely in light of new legislative requirements for LTC homes in Ontario (Fixing Long-Term Care Act, 2021). This legislation requires LTC licensees to formalise a process to engage residents in quality improvement and operational planning. Third, the focus on engagement aligns with the culture change movement, which emphasises resident-centred and resident-directed values and practices. The voices of older adults and the people who work with them need to be valued and respected.14 15

Table 1

Adaptation of Carman et al’s11 patient engagement framework to LTC homes and residents

The current project aims to inspire transformation in LTC homes’ culture by exploring, consolidating and promoting ways for residents to be engaged in their LTC homes’ organisational design and governance. Within the knowledge-to-action framework,16 the current project represents collaborative ‘knowledge creation’ that is supported by an ‘action cycle’, or application, led by our community partner, the Ontario Association of Residents’ Councils (OARC). The specific objectives are to:

  1. Synthesise existing knowledge on approaches to engaging LTC home residents in organisational design and governance of their LTC homes.

  2. Assess community capacity to implement and sustain a programme to engage LTC residents in organisational design and governance of their LTC homes.

  3. Codesign toolkit(s)/resource(s) to enable the engagement of LTC residents in the organisational design and governance of their LTC homes.

Methods and analysis

Our community-based participatory research17 project integrates cocreation18 19 and aligns with concepts of patient-oriented research20 and integrated knowledge translation.19 Stakeholders will guide the research project, including dissemination methods. We have integrated codesign, a methodology to engage end-users to assist in developing products or services through knowledge sharing.21–23 By incorporating stakeholder feedback, this methodology enhances the impact, usefulness and benefit of the research.24 25 Cocreation allows the project team to integrate the end-users’ perspectives and experiences and develop shared values.26

This three-part codesign project consists of a scoping review, qualitative interviews and focus groups, and toolkit/resource development. These components are situated within the codesign steps of engage, plan, explore, develop, decide and change (figure 1).22 We have engaged with our key stakeholder groups: LTC residents, staff (hereafter referred to as ‘team members’) and administrators by establishing relationships through OARC. Authentic relationships underpin the work because these partnerships will help guide all subsequent steps in the codesign process. Collectively, with stakeholders, we have planned the current project’s objectives by obtaining peer-reviewed research funding and preparing the project protocol. We will explore the end-user experience through the scoping review (part 1) and interviews and focus groups (part 2).22 For the latter three steps, develop, decide and change, we will codevelop toolkit(s)/resource(s) to facilitate the engagement of residents in LTC homes.

Figure 1
Figure 1

Overview of project components in alignment with the codesign steps and application of the PRISM/RE-AIM model. Step 1: ENGAGE. In this step, the research team builds relationships with OARC and their resident volunteers. Step 2: PLAN. In this step, we define the research scope, objectives and methods. The PRISM contextual factors are used as an integrated framework to guide how to plan for the creation of a toolkit/ resource. Step 3: EXPLORE: We explore existing resident engagement practices that are documented in the literature through a scoping review, as well as current practice and community readiness through interviews/ focus groups. We apply components of the PRISM/REAIM framework to analyse the scoping review questions. Steps 4–6: DEVELOP, DECIDE and CHANGE. At this step, we will iteratively cocreate and prototype a toolkit/ resource. We will apply the RE-AIM planning tool to guide the cocreation process. PRISM, Practical Robust Implementation and Sustainability Model; RE-AIM, Reach, Effectiveness, Adoption, Implementation, Maintenance.

Patient/public involvement

This project is being conducted in partnership with the OARC, a non-profit organisation funded by the Ontario government to provide support, education and resources to residents, Residents’ Councils and LTC home workers. This community organisation, which has a direct connection with residents living in LTC homes across Ontario, is engaged through all steps of the project, including priority-setting, conduct and knowledge dissemination.27 OARC was involved in determining the key concept of research and continues to inform and engage others, including LTC residents, team members and administrators, in defining the direction of the research. The project team includes researchers, trainees, OARC’s team members and residents of LTC homes; all members will be offered opportunities to become involved in different aspects of the project, but with the flexibility to accommodate individual strengths, needs and preferences.

We will involve four OARC groups (see table 2) during the conduct of the project: the Education Committee, the Resident Expert Advisors and Leaders group, Resident Forums and the Residents’ Council Assistants Forum. These groups will assist with refining the research questions, interpreting the findings and contextualising the findings for different audiences. The groups will also inform the development and dissemination methods of the corresponding toolkit(s)/resource(s). Approaches to involvement were informed by a guide for promising practices in engaging LTC communities in research.28

Table 2

Description of Ontario Association of Residents’ Council (OARC) groups involved in the project

Key concepts

In all stages of the project, our focus is on three key areas:

Population: adult LTC home residents

Other approaches, for example, exclusively engaging team members or families, are not considered in the current study.

Concept: evidence of resident engagement in LTC home organisational design and governance

Our project focuses on integrating resident values, experiences and perspectives into the design, delivery and evaluation of LTC homes. Analogous to Bombard et al’s review of health services,29 we apply Carman et al’s model of patient engagement.11 This framework recognises three critical aspects of engagement: (1) engagement activities range along a continuum (consultation, involvement and partnership); (2) engagement occurs at different levels (resident, home and system) and (3) multiple factors affect the willingness and ability of residents to engage. We focus on examining involvement and partnership in organisational design and governance (see table 1). Within the LTC home, such involvement may be through serving on councils and committees, participating in designing and executing quality improvement projects, assisting with team member hiring, training and development, and contributing to the design of their LTC homes’ physical environment.11 Surveys of residents conducted by LTC homes (ie, consultation) are not within the scope nor are studies of engagement in direct care (resident level) or policy-making (system level).

Context: LTC homes

LTC homes are settings that provide ongoing functional support and care for people who require assistance with daily living activities.1 In part 1, our scoping review, we will focus on LTC homes and include other congregate living settings that are primarily for older adults (eg, assisted living or retirement homes). We draw on evidence from these other contexts to acknowledge the diverse definitions and categorisations assigned to the different types of supportive housing, and, despite the differences in the systems in which they operate (including funding and care models), the commonalities for the populations who live in them.30–32 In parts 2 and 3, we will focus exclusively on LTC homes. Although, the findings may have implications for similar types of supportive housing.

Part 1: scoping review

The scoping review will follow the six steps by Arksey and O’Malley33 and extended by Levac et al,34 as outlined with the modifications below.

Step 1: identifying the research question

The research questions were developed and refined through deliberations with OARC:

  1. How have LTC residents been engaged in the organisational design and governance of LTC homes?

  2. What are the reported barriers and enablers to this engagement?

  3. How have considerations of diversity (eg, related to age, gender expression and identity, culture, disability, education, ethnicity, language, religion, race, sexual orientation and socioeconomic status) been integrated into this engagement?

  4. How have considerations of dementia and cognitive impairment been integrated into this engagement?

  5. How has the impact of this engagement been evaluated, including with resident-centred outcomes, resident-centred experiences, resident/family/team member satisfaction or health economic outcomes?

Step 2: identifying relevant studies

Information sources

We will search electronic databases for grey and academic literature. An information specialist will create, refine and execute a search strategy (see online supplemental appendix A) in consultation with the project team. The information specialist will conduct the search in Medline followed by translation to other databases. We will search eight databases: MEDLINE, CINAHL (EBSCO), PsycINFO, Web of Science, Sociological Abstracts (ProQuest), Embase and Embase Classic (Ovid), Emcare Nursing (Ovid), AgeLine (EBSCO). These databases were chosen for their focus on biomedical science, behavioural, life and social sciences, nursing or ageing. We will include studies that engage residents in organisational design and governance (see the Key concepts section). We will not apply restrictions on language, publication location, publication date or study design. We will include reports of original data and exclude protocols, reviews, letters and editorials (unless they report small-scale studies). Articles without full-text availability will be excluded. Eligible grey literature types include conference proceedings, theses and dissertations, and association and government reports. Due to project feasibility, news articles, blogs and social media will be excluded from our grey literature search.

Supplemental material

We will identify relevant association, government or stakeholder reports via keyword searches on websites of Canadian and American organisations that are reputable to the LTC sector (see online supplemental appendix B). When searching the organisations’ websites, we will record the keywords used, the website or organisation’s name, the URL and the date of the search. Allowance was made to include other relevant literature identified through stakeholder feedback or scanning through the reference list of relevant reviews and eligible grey or academic references.

Supplemental material

Step 3: study selection

Sources retrieved through the database searches will be deduplicated in EndNote35 and collated into Covidence for the title and abstract screening, followed by a full-text review. All reviewers will first meet to discuss their decisions on a pilot set of fifteen references to optimise congruence. Each reference will then be independently screened by two reviewers. Any discrepancies when screening the titles and abstracts will be resolved through discussion and consensus. Discrepancies during full-text screening will be resolved through discussion and consensus. We will screen the grey literature found on key organisations’ websites for relevance in two stages: first, by previewing executive summaries or tables of contents, followed by a full-text review.36

Step 4: charting the data

Two reviewers will independently extract data for each reference using Covidence. We will collect the recommended information: author(s), year of publication, study location, a description of the study population and setting (eg, demographic characteristics of residents and characteristics of the home), aims of the study, outcome measures and relevant results.33 The project team will design a data extraction form (see online supplemental appendix C) and then test the form on a set of ten references and modify it as needed.

Supplemental material

Step 5: collating, summarising and reporting results

We will summarise the study characteristics in tables and analyse the qualitative data using the framework method.37 The engagement methods will be described, including according to the residents they engage and the settings in which they take place. Relevant qualitative findings will be quoted from the reference and inductively coded to identify initial themes informed by the extended PRISM (Practical Robust Implementation and Sustainability Model)/RE-AIM (Reach, Effectiveness, Adoption, Implementation, Maintenance) model.38 The PRISM/RE-AIM model will guide the review of all scoping review questions except the first, which describes the engagement approach. PRISM/RE-AIM is an integrated model developed to improve the external validity of research findings39 by considering multilevel contextual factors both external and internal, such as policies, incentives, resources, and the characteristics and beliefs of organisations and individuals. These PRISM contextual factors predict RE-AIM outcomes: reach, effectiveness, adoption, implementation and maintenance.38 We will use the PRISM contextual factors as a framework to analyse and report our second scoping review question on barriers and enablers. Aspects of reach will guide the analysis of the third and fourth scoping review questions regarding considerations of diversity and cognitive ability. We will use all five RE-AIM dimensions to frame the analysis of the final scoping review question on evaluation (see table 3). We will report the findings in a narrative synthesis. Reporting of the scoping review procedure and findings will be guided by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses–Extension for Scoping Reviews.40

Table 3

Scoping review questions according to application of PRISM/RE-AIM

Part 2: qualitative interviews and focus groups

Engaging LTC residents in the organisational design and governance of LTC homes will introduce change for many LTC homes. Successful development, implementation and sustainability of tools/products will require a good understanding of the barriers and needs from the perspectives of LTC residents, team members and administrators.41 We will conduct individual qualitative interviews or focus groups with LTC residents, team members (including those who provide care in and/or support to LTC homes) and administrators to assess the LTC community’s capacity to implement and sustain a toolkit/resource that engages LTC residents in organisation design and governance. We will assess community capacity using PRISM as a framework to identify and describe internal and external contextual factors (see table 4).42

Table 4

PRISM contextual factors to be collected during the interviews and focus groups

Participants will be recruited through the OARC’s communication channels and other LTC networks within Ontario, Canada. We will use purposive sampling to recruit residents, team members and administrators from diverse backgrounds. Our interviews and focus groups will be led by topic guides which we will prepare based on PRISM, the findings of the scoping review and in consultation with the project team. We anticipate asking participants about knowledge, attitudes and perceived barriers and needs related to engaging LTC residents in the organisational design and governance of LTC homes (see online supplemental appendix D). We will also collect individual and home-level information from each participant, for example, demographic information, role(s) in LTC and home characteristics. All participants will be required to provide informed consent.

Supplemental material

One or more project team member(s) will conduct the interviews and focus groups . They will be conducted online (via videoconference or phone) or in-person according to the preference of the participant and logistical considerations (eg, travel distance). We will incorporate different interviewing techniques to engage with a diverse range of participants, such as incorporating accessibility aids like pocket talkers. The project will leverage OARC’s experience facilitating online and in-person meetings with LTC residents (eg, see table 2).

Interviews and focus groups will be audiorecorded and transcribed. We will follow a thematic analysis process, whereby we familiarise ourselves with the data and generate codes to identify, refine and analyse themes. Data will be deductively coded using the PRISM contextual factors as a framework and then combine codes into subthemes.43 We will use Dedoose software to analyse the anonymised transcripts. The preliminary results will be discussed with the OARC groups (see table 2) who will be involved in interpreting the findings. The final results will be presented in a narrative synthesis.

Part 3: toolkit/resource development

We will follow the codesign approach to integrate scientific evidence, expert knowledge and experience to design the toolkit(s)/resource(s) for meaningful engagement.44 45 The project team and other stakeholders will engage in a series of workshops to codesign the toolkit/resource prototype(s); participants will include LTC residents, team members and administrators as well as other stakeholders, including OARC team members, researchers and decision-makers (see table 2). First, we will present results from parts one and two and then ask for views on critical elements for toolkit/resource design and implementation. We will use the RE-AIM framework46 as a planning tool to establish key elements of the toolkit/resource (https://re-aim.org/applying-the-re-aim-framework/re-aim-guidance/use-when-planning-a-project/)) although critical application of the RE-AIM framework may entail focusing on a pragmatic use of key dimensions rather than all elements.46 Second, we will obtain views on the toolkit’s/resource’s principles, content and format, including developing a logic model for the programme to provide a graphical representation of the theorised processes and outcomes.47 Third, we will brainstorm resources to support and facilitate the use of the toolkit/resource. Ultimately, the outcome of the codesign process will be prototypes of evidence-informed and resident-oriented toolkit/resource that will be disseminated through academic and non-academic channels.

Ethics and dissemination

Research ethics board approval is being obtained for part 2 (qualitative interviews) through the University Health Network (Toronto, Canada).

The project team will disseminate the findings of the scoping review (part 1) and qualitative data collection (part 2) through publications in academic journals and presentations at conferences. Presentations will be codelivered by a researcher or an OARC team member with an LTC resident whenever possible. The focus of the presentations will be tailored to the specific audience. We will coauthor non-academic project outputs, including the final toolkit/resource) and lay summaries or infographics of other findings, with OARC team members. OARC will disseminate these non-academic project outputs using their communication channels to their network of knowledge users.

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