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Strategies for engaging senior citizens and their informal caregivers in health policy development: a scoping review protocol
  1. Opeyemi Kolade1,
  2. Joshua Porat-Dahlerbruch1,
  3. Theo van Achterberg2,
  4. Moriah Ellen1,3
  1. 1Department of Health Policy and Management, Guilford Glazer Faculty of Business and Management and Faculty of Health Sciences, Ben-Gurion University of the Negev, Be'er Sheva, Israel
  2. 2Department of Public Health and Primary Care, Academic Centre for Nursing and Midwifery, KU Leuven, Leuven, Belgium
  3. 3Institute of Health Policy Management and Evaluation, University of Toronto Dalla Lana School of Public Health, Toronto, Ontario, Canada
  1. Correspondence to Dr Moriah Ellen; ellenmo{at}bgu.ac.il

Abstract

Introduction Care for senior citizens is a global policy issue. There has been limited focus on senior citizen and informal caregiver engagement in policy development. Encouraging senior citizen participation through active engagement in the policymaking process enhances the provision of better services and the creation of responsive policies and is critical to better healthcare. Accordingly, this review aims to map the available evidence to provide an overview of strategies for engaging senior citizens and informal caregivers in health policy development.

Methods and analysis A scoping review will be conducted. This study will use the updated methodological guidance for conducting a scoping review developed by the Joanna Briggs Institute. This review aims to answer the question: ‘What is known in the literature about strategies for engaging senior citizens and informal caregivers in health policy development?’ Titles and abstracts will be screened to determine eligibility for full-text review based on already established eligibility criteria. Data will be extracted from relevant articles. A summary of extracted data will be presented. The results will be interpreted within the Multidimensional Framework for Patient and Family Engagement in Health and Healthcare.

Ethics and dissemination Ethical review is not required as scoping reviews are a form of secondary data analysis that synthesises data from publicly available sources. Findings from this proposed review will be disseminated in conferences and to the global scientific community through published academic papers in reputable health policy-related journals.

  • Health policy
  • QUALITATIVE RESEARCH
  • PUBLIC HEALTH
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This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.

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STRENGTHS AND LIMITATIONS OF THIS STUDY

  • This is the first known review that seeks to address knowledge and evidence gaps on strategies for engaging senior citizens and informal caregivers in health policy development from existing literature.

  • The review will build on the Multidimensional Framework for Patient and Family Engagement in Health and Healthcare, thus a theoretical contribution to the literature.

  • Publications will be searched from multiple electronic databases with peer-reviewed literature and a broad range of grey literature sources, using a comprehensive search strategy, thus an opportunity to retrieve all potentially relevant publications.

  • All languages will be included, thereby reducing publication bias based on the language of publication.

  • According to scoping review methods, the optional quality assessment of articles will not be performed.

Introduction

Around 16% of the world’s population is predicted to be 65 years or older in 2050.1 Care needs increase with age, and senior citizens have unmet care needs related to their physical and psychological health, social life, and the environment in which they live and interact.2 Senior citizens are extensive users of health and social care services and are greatly affected by health policy decisions across all care settings. Similarly, informal caregivers assume many different roles in providing care support for senior citizens, thus constituting a heavy burden on them.3 Their input or that of their informal caregivers in health policy development is under-represented.4 Little is known about strategies used to engage them in designing or implementing policies that matter to them.5 Yet senior citizens and their informal caregivers should have a voice in decisions associated with them since involving their perspectives in all stages of policymaking can improve the success and ownership of policies and sustainability of the outputs.6 As most previous research on engagement at the policy level focuses on the general population, this does not often reflect senior citizens' unique and complex social and healthcare needs .

Citizen engagement and deliberative methods can change knowledge and attitudes,7 promote active citizenship, and improve relationships between the government and citizens.8 9 Effective citizen engagement and public deliberation can also lead to improved outcomes for citizens, policymakers and policymaking. When citizens are engaged, policymakers are better aware of what outcomes need to be addressed. Citizen engagement can improve multiple types of outcomes such as instrumental, developmental and democratic outcomes. Instrumental outcomes mean generating awareness of lived experience and improving the quality of policymaking by ensuring that policies, programmes, and services align with the values and needs of citizens, provision of better services, healthcare and improved quality of care,10 11 and the creation of responsive policies.12–14 Developmental outcomes mean providing education and raising awareness about pressing health issues and developing citizens’ capacity to take part in public policy matters,15 and democratic outcomes mean supporting transparency, accountability, trust and empowerment.9 16–18 Citizen engagement benefits individuals, organisations, and society by increasing knowledge, power, and problem-solving ability.19 Finally, involving citizens in policy decisions can increase the legitimacy and transparency of decision-making processes and help inform health policy decisions.20 Senior citizen and informal caregiver engagement in policy is pivotal as health policy decisions are not only relevant to them but also impact the healthcare system.

Previous research has tried to understand mechanisms needed to engage senior citizens in healthcare decision-making, research and planning.21 22 However, there is limited published literature specifically focused on senior citizen and informal caregiver engagement in health policy development. Most existing research focuses on all citizens’ engagement in research and at point of care. Similarly, there is a dearth of literature on caregiver engagement in health policy development. Few examples for caregiver engagement in health policy development exist. For example, Keogh et al23 described the use of an innovative approach, being Carers assembly to increase the involvement of caregivers of people with dementia in the policymaking process in Ireland.

Thus, this current scoping review aims to provide an overview of available research evidence on strategies for senior citizens’ and informal caregivers’ engagement in health policy decision-making. This research synthesis aims to map the literature on strategies for senior citizens and informal caregiver engagement in health policy and to provide an opportunity to understand key concepts and identify knowledge gaps on engagement strategies. The review will provide an evidence-based foundation to guide senior citizen engagement in health policy development and demonstrate how engagement strategies have been used in health policy development in different contexts.

This scoping review will be the first to synthesise the existing evidence on strategies for senior citizen and informal caregiver engagement in health policy development as described in peer-reviewed and grey literature. It is thus a novel scoping review to identify and describe engagement strategies for senior citizens and informal caregivers as used in different contexts.

Methods

Scoping review design

This scoping review will follow the approach recommended by the Joanna Briggs Institute.24 The scoping review methodology was chosen for its suitability for addressing our proposed topic as it will provide an opportunity to assess the extent of the available evidence on engagement strategies for senior citizens and informal caregivers in health policy development, as well as identify and analyse knowledge gaps.

Senior citizens will refer to persons aged 65 years and above for this review. The term citizen will be used more comprehensively without discrimination to refer to every person in a society or country.25 Informal caregiver is an unpaid individual (for example, a spouse, partner, family member, friend or neighbour) involved in assisting others with activities of daily living and medical tasks.26 Citizen engagement is defined as the meaningful involvement of individual citizens in policy or programme development, from agenda setting and planning to decision-making, implementation and review.27

Conceptual model

This scoping review will use the Multidimensional Framework for Patient and Family Engagement in Health and Healthcare proposed by Carman et al28 (figure 1), which was influenced by Arnstein’s “ladder of citizen participation.”29 This framework presents engagement in three elements: continuum, levels and factors influencing engagement. These three elements will guide in mapping evidence from the literature. It outlines a continuum of engagement activities (consultation, partnership and shared decision-making) across three levels of the healthcare system (individual care, organisational governance and government policy) and describes factors influencing engagement. The framework presents engagement at the personal level of care as considering patients’ preferences and values in treatment decisions. At the organisational care and governance level, patients’ and families’ perspectives are considered in the design and governance of healthcare organisations and projects. Engagement at the policymaking level is centred on developing, implementing, and evaluating healthcare programmes and policies through collaborations between citizens and policymakers.28 Engagement occurs at the lower end of the continuum but with a limited effect on decision-making. In contrast, there is active partnership, signified by a bidirectional flow of information at the higher end and shared decision-making responsibility. Furthermore, this study will expand on the Multidimensional Framework for Patient and Family Engagement in Health and Healthcare28 by including components in the extraction table specific to senior citizen and informal caregiver engagement in health policy development. The scoping review will identify and describe different strategies/methods for senior citizen and informal caregiver engagement in health policymaking. More specifically, this review will extract and synthesise data on items relevant to the framework: continuum of engagement, phase of policy development in which engagement occurs, factors influencing engagement and engagement outcomes. Additionally, outcomes of engagement, comparisons of engagement strategies, and efforts to involve minority groups will also be extracted and synthesised.

Figure 1

A Multidimensional Framework for Patient and Family Engagement in Health and Healthcare.28

Search strategy

In line with the Joanna Briggs Institute recommendations,24 a three-step search strategy will be used. An initial limited search of two online databases (MEDLINE (through PubMed) and Embase) will be conducted. This search will use the search strategy in table 1. This will be followed by an analysis of the keywords in the title and abstract of retrieved papers and the index terms used to describe the articles. A second search will use all identified keywords and index terms across other databases: Health Systems Evidence, Health Evidence and CINAHL. Third, the reference lists of identified reports and articles will be searched for additional sources. We will work with a librarian for the refinement of the search strategy and conducting the search on all relevant databases. Authors of primary sources or reviews will also be contacted when necessary for further information. With consultation from stakeholder groups and major international organisations, sources that would hold grey literature on practices for engaging senior citizens and their informal caregivers in health policy development will be identified. A search will be conducted, and all available information will be retrieved.

Search results will be imported into EndNote V.20 where duplicates will be removed, then into an online systematic review software, Covidence (www.covidence.org). Titles and abstracts will be screened to determine eligibility for full-text review based on the eligibility criteria described in the following section. All research team members will first screen a sample together using the eligibility criteria, then two researchers will independently screen all titles and abstracts. Disagreements will be discussed and resolved through discussion or involving a third team member, and consensus will be reached. A Preferred Reporting Items for Systematic Reviews and Meta-Analyses flow diagram of the literature search and selection process will be presented. The study is being conducted between April and November 2022.

Table 1

Search strategy

Inclusion/exclusion criteria

Empirical studies, for example, qualitative, quantitative, and mixed-methods research, systematic and scoping reviews, and grey literature reports will be included if they report on policy development in the areas of health and well-being; address the use or evaluation of a method/practice for engaging senior citizens and informal caregivers in health policy development; focus on senior citizens defined as persons with a minimum age of 65 years (or a majority of participants are aged 65 years and above), and/or their informal caregivers or addressed with proxy words such as chronically ill, dementia, and frail elderly; and address policy development at regional, national, or international level.

Due to a dearth of literature on senior citizen engagement in health policy development, there will be no limit to publication year. There will be no language restrictions included in the eligibility criteria and in the search strategy. This means that search results in every language (of the world/where an article on the subject has been written) generated from our search strategy will be included for review, if they meet all other eligibility criteria. Abstracts of studies in languages other than English will first be translated using the help of a colleague who is proficient in the language. If considered relevant, the full texts will then be translated using the help of a translation firm. Studies discussing senior citizen and informal caregiver engagement in research or at the point of care will be excluded. Studies addressing all citizen engagement with no particular attention to senior citizens will be excluded.

Data charting, summarising and reporting the results

A preliminary data charting table (see box 1) has been developed and will be piloted to familiarise with results, based on the elements presented in the engagement framework by Carman et al.28 This Multidimensional Framework for Patient and Family Engagement in Health and Healthcare will be used to guide analysis and data will be categorised based on its elements. We will first capture information on engagement approaches used in the included relevant articles, their characteristics and how they were used to engage senior citizens and/or informal caregivers in health policy development. Then, we will interpret these findings based on the elements in the framework. We will extract data on continuum of engagement, phase of policy development, factors influencing policymakers to create opportunities for engagement, outcomes of engagement, comparisons of engagement strategies, and efforts/initiatives to ensure engagement of senior citizens of minority groups, if stated. Two researchers will pilot the data extraction table. The table will be further refined and updated as required in accordance with the review’s objectives. A descriptive summary of the findings will be presented. Data on authors, sources of evidence, year of publication, country/origin/setting of study, and engagement frameworks will be extracted and presented. Regardless of the study designs of the included studies, the descriptions of the engagement strategies reported in the included studies will be the focus of the analysis, and this will be guided by the Multidimensional Framework for Patient and Family Engagement in Health and Healthcare.

Box 1

Scoping Review Details

Article title

Review objectives

Review questions

Study type (case, empirical, review)

Study design (quantitative, qualitative)

Evidence source details and characteristics

Citation details

Country/geographical setting

Context participants/population studied (age, sex, number)

Inclusion/Exclusion Criteria

Population

Includes senior citizens aged 65 and above and/or their informal caregivers

Concept

Describes strategies for senior citizen and informal caregiver engagement

Context

Describes strategies for senior citizen and informal caregiver engagement in policies around health and well-being

Details/results extracted from publications

Name of engagement strategies discussed

Description of strategy

Stated continuum of engagement (consultation, involvement, partnership, and shared leadership)

Stated phase of policy development (e.g. policy formulation, implementation, or evaluation)

Stated factors influencing policy makers to create opportunities for engagement in health policy development

Stated outcome(s) of engagement strategies:

Change in knowledge and attitude of engaged senior citizens and informal caregivers

Promotion of active citizenship (e.g., do senior citizens and informal caregivers feel a sense of citizenship and participation in decision making)

Impact on relationship between the government and the citizens

Senior citizens’ and informal caregivers' awareness of one-another’s lived experiences

Increased knowledge about care transitions and engagement

Developed capacity to take part in public policy matter

Any other reported outcomes

Data on comparisons of different engagement approaches

Data on efforts/initiatives to ensure engagement of senior citizens of minority groups, if stated

How strategy was used for engagement in health policy development

Health policy topics discussed using engagement approaches

Stated engagement frameworks discussed

Patient and public involvement

There was no patient nor public involvement.

Ethics and dissemination

This study does not require ethical approval as it will use publicly available data and does not involve human subjects’ research. This study will constitute the first step in a research plan aimed at identifying engagement strategies and comparing them for variation, content, and breadth and depth of insights. The findings of this review will guide researchers, stakeholders, government and non-governmental organisations as well as policymakers in conversations around engagement in this context.

Data sharing statement

This is an open-access article distributed in accordance with the Creative Commons Attribution Non-Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build on this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial (see http://creativecommons.org/licenses/by-nc/4.0/).

Ethics statements

Patient consent for publication

Acknowledgments

Thomas Vandendriessche and Chayenne Van Meel, librarians at KU Leuven, and Ruth Suhami, a librarian at Tel-Aviv University

References

Footnotes

  • Twitter @opeyemilas, @JPoratDahler, @MoriahEllen

  • Contributors OK drafted the scoping review protocol. JP-D, TvA and ME revised and reviewed the protocol.

  • Funding This project has received funding from the European Union’s Horizon 2020 Research and Innovation Programme under the Marie Sklodowska-Curie grant agreement no 812656.

  • Competing interests None declared.

  • Patient and public involvement Patients and/or the public were not involved in the design, or conduct, or reporting, or dissemination plans of this research.

  • Provenance and peer review Not commissioned; externally peer reviewed.