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Abstract
Introduction The prevalence of dementia among the elderly population in South Korea was 9.94% in 2017, and the number of people living with dementia is estimated to increase up to one million by 2024. Considering that approximately 55%–85% of people with dementia are taken care of by family members in South Korea, the phenomenon of resilience for family caregivers with patients with dementia should be understood within a Korean cultural context. The purpose of this paper is to describe the protocol of a scoping review addressing the resilience of family caregivers for Koreans with dementia.
Methods and analysis Arksey and O'Malley’s scoping review framework and Joanna Briggs Institute’s manual for scoping reviews will guide the review methods. Multiple databases, including Ovid-MEDLINE, Ovid-EMBASE, PsycINFO, Cumulative Index for Nursing and Allied Health Literature and Korean databases will be identified using controlled vocabulary and text words. Two review authors will independently screen and select studies based on predefined eligible criteria. The extracted data will undergo descriptive analysis of the contextual data and a quantitative analysis using the appropriate descriptive statistics.
Ethics and dissemination Because the scoping review methodology consists of reviewing and collecting data from the published literature, this study does not require ethics approval. This scoping review will serve to highlight existing gaps within the literature to guide further research and to develop future strategies to measure and improve the resilience of family caregivers for patients with dementia in South Korea.
- protocols & guidelines
- public health
- quality in health care
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Strengths and limitations of this study
This will be the first scoping review to describe the resilience of Korean family caregivers for people with dementia.
Our scoping review will follow Arksey and O’Malley’s methodological framework and the methodology manual published by the Joanna Briggs Institute for scoping reviews.
The searched database will be limited to Ovid-MEDLINE, Ovid-EMBASE, PsycINFO, CINAHL (Cumulative Index to Nursing and Allied Health Literature) and Korean databases (KoreaMed, Korean Medical Database (KMbase), Korean Studies Information Service System (KISS) and Korea Institute of Science Technology Information (DBpia)).
Introduction
The number of people with dementia globally is projected to increase from 55 million in 2021 to 139 million by 2050.1 The prevalence of dementia among the elderly population, people aged 65 years and over, in South Korea is 9.94% (702 436 people) in 2017 and those living with dementia is estimated to increase up to one million in 2024 and will be two times that, 2 million, by 2041.2 In addition, the total national cost of dementia care in South Korea was approximately US$10 billion in 2015 and is estimated to be more than US$82 billion by 2050.3 To make matters worse, South Korea is facing a super-aged society within a decade, making dementia is one of the top public health issues that should be prioritised.3
According to the Ministry of Health Welfare in South Korea, the COVID-19 resulted in 13 375 818 patients and 16 590 deaths in South Korea as of 1 April 2022.4 Those aged over 70 years accounted for approximately 82% of deaths from COVID-19. In particular, this global pandemic put patients with dementia in a vulnerable situation.5–7 Social distancing and self-isolation during COVID-19 have had a serious effect on worsening cognitive symptoms and behavioural disturbances to patients with dementia.8 9 In addition, dementia was a significant risk factor for mortality of COVID-19 patients in South Korea.5 6 10 Taken together, family caregivers of patients with dementia are facing new challenges due to COVID-19.
Dementia is a clinical syndrome that encompasses a variety of neurological disorders, including cognitive, behavioural, emotional and social impairment, that require high caregiving demands in long-term care.11 People with dementia and their family caregivers can experience psychological, physical and economic difficulties.12 During the COVID-19 pandemic, family caregivers with dementia experienced higher levels of anxiety, depression, stress and caregiver burden than before the pandemic.8 13–15 In addition, caregivers of a person with dementia experienced more caregiving burden than those of a person without dementia.16 More specifically, most family caregivers of people with dementia suffer significantly high levels of emotional stress, poor mental and physical health, as well as economic burden.16 17 On the other hand, some family caregivers experience a sense of personal accomplishment and gratification, feelings of mutuality, a family cohesiveness and functionality, and personal growth and purpose in life.18 19 Throughout the illness trajectory, healthcare providers play an important role for family caregivers of people with dementia to promote their well-being by enhancing positive adaptation to family caregiving in chronic illness.16 That is to say, healthcare providers can encourage them to promote a high level of family resilience, which results in a better quality of life and favourable health outcomes to family caregivers.
Because resilience is a complex, multidimensional construct, it may not be clearly delineated.16 17 20 Depending on biological, psychological, sociocultural and environmental factors, the definitions of resilience are diverse.21 22 There are three dominant theoretical models that address resilience, and those summarise resilience as a personal trait that enables an individual to overcome adversity, as a dynamic process to promote positive adaptation, and as an outcome itself as a consequence of a stressful event.16 17 20 23
In South Korea, the concept of resilience was introduced in the late 1990s and has been studied across disciplines, mostly among Koreans with specific health problems.24 Because resilience is influenced by diverse sociocultural factors,25 it is especially crucial to understand the phenomenon of resilience from a cultural perspective. Caretaking role for parents varies from country to country and people in some cultures often take care of elderly family members without Confucianism.7 8 11 12 However, Confucianism has a strong impact on caregiving in Korean culture. Confucianism adds an extra level of expectation of responsibility in caretaking and also adds to the caregiver burden. For example in South Korea, resilience among family caregivers for people with dementia is dominated by Confucian values and beliefs. The family is regarded as the first agent of care for the elderly, an idea based on the traditional Confucian practice of filial piety, moral and ethical norms for parent–child relationships.26 27 Adult children view taking care of older parents as an obligation and responsibility, according to traditional Confucian beliefs.28–30 Due to the traditional Confucian value of strong family bonds, approximately 55%–85% of people with dementia are taken care of by family members in South Korea.31 32 As a result, when older parents are sent to residential facility care, Korean children experience depression, helplessness and guilty feelings about ‘abandoning’ their parents.33–35 Thus, the phenomenon of resilience for Korean family caregivers with patients with dementia also needs to be understood within a Korean cultural context.
Numerous family resilience studies conducted with diverse population in western cultures have brought enormous insight to the phenomenon of resilience for family caregivers.17 20 36 In a recent review of studies to identify existing theoretical models and measures of resilience in caregivers living with patients with dementia, there was significant variability and inconsistency in definitions and measures of resilience.17 37 Researchers identified three comprehensive theoretical frameworks that regard resilience as a personal trait, process and outcome, and these frameworks require additional validation and conceptualisation for the circumstance of dementia caregiving. In addition, the researchers highlighted a lack of a widely accepted resilience theory or a conceptual framework. In a recent systematic review of resilience in dementia caregiving, various factors such as caring, social and cultural characteristics, and psychological dimensions of caring had an effect on the adaptation and resilience of family caregivers.16 However, most of the studies included in the review were conducted among Caucasian populations in Western countries.16 17 20 37 As a result, we do not know how caregiver resilience may be conceptualised and theorised in other cultures. Due to a lack of review research regarding definitions and theories of resilience in the context of dementia caregiving, we do not know what theoretical perspectives have been used in Korean research of resilience.
As a result, the review findings might limit the understanding of resilience among family caregivers of Koreans with dementia. Although the research regarding this topic has been studied over the last few decades,38–44 there is little Korean research that synthesises an extensive review of research regarding resilience based on the uniqueness of family caregiving for a chronic illness like dementia. More specifically, information available in theories, measurements, correlates and outcomes, and interventions for the resilience of Korean family caregivers of individuals with dementia has not been systematically identified, and that information may help examine, evaluate and integrate the phenomenon of resilience among that cultural population.
In order to most effectively delineate research evidence on a topic to find the conceptual framework, theories, measurements of evidence and gaps in existing studies,45 we chose a scoping review as the best methodological approach to guide our understanding of resilience among Korean family caregivers with dementia. The purpose of this paper is to describe the protocol of a scoping review addressing resilience among family caregivers for Koreans with dementia.
Methods and analysis
The scoping review is an appropriate methodological approach for drawing a blueprint of a research phenomenon, as it provides valuable insight to a research topic widely and systematically from available evidence while also identifying gaps in the existing research.46 The reasons that we used a scoping review were as follows. First, it can explain the findings in detail and demonstrate the range of research in resilience of Korean family caregivers for individuals with dementia, which leads to a method for summarising and disseminating research findings to healthcare providers and researchers. Second, it can draw conclusions from existing research literature by identifying gaps in the research evidence where no research has been conducted in resilience of Korean family caregivers for individuals with dementia.46
This study aims to present a protocol for a scoping review of resilience among Korean family caregivers for people with dementia. This scoping review followed the methodological framework introduced by Arksey and O’Malley in 200546 and the methodology manual published by the Joanna Briggs Institute for scoping reviews.47 The present protocol and future corresponding scoping review are reported in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Review guidelines.48 We followed the process of the framework that Arksey and O’Malley46 adopted for conducting a scoping review for this protocol study. The process involves five methodological stages: (1) identification of the research question, (2) identification of relevant studies (search for relevant studies), (3) selection of studies, (4) charting the data and (5) collating, summarising and disseminating the results. Each stage will be described in detail below. Although the framework includes an optional stage 6 (consultation exercise), we did not include stage 6 due to time constraints. We planned to start the study in October 2021 and finish it by September 2022.
Stage 1: identification of the research questions
The first stage of this study is to identify the research questions. Based on the guidelines that Arksey and O’Malley46 suggested at this stage, we maintained a broad approach to develop a breadth of coverage in resilience of Korean family caregivers for people with dementia. In order to create specific research questions, we used an adaptation of the Population, Concept, Context (PCC) framework suggested by the Joanna Briggs Institute.47 Therefore, we generated the following research questions through consensus from the research team. The research questions are:
What research theories have been used to study the resilience of family caregivers for Koreans with dementia?
What instruments have been used to measure the resilience of family caregivers for Koreans with dementia?
What are the correlates and health outcomes of resilience within this population?
What interventions improve resilience of family caregivers for Koreans with dementia?
Stage 2: identifying relevant studies
At this stage, the research team discussed search strategies, the eligibility criteria and electronic databases. In order to construct a systematic plan for the database search and to consider the research questions, we employed the PCC framework recommended by the Joanna Briggs Institute47 for scoping reviews (table 1).
PCC framework of our scoping review
The authors will search the following electronic databases: Ovid-MEDLINE, Ovid-EMBASE, PsycINFO, CINAHL (Cumulative Index to Nursing and Allied Health Literature) and Korean databases (KoreaMed, Korean Medical Database (KMbase), Korean Studies Information Service System (KISS) and Korea Institute of Science Technology Information (DBpia)). Grey literature will be searched using Research Information Sharing Service for searching dissertations or public reports published in South Korea. Search strategies have been created by review authors with expertise in scoping and systematic review searching using MeSH or text words related to dementia, caregiver and resilience in conjunction with database-controlled vocabulary. In addition, in order to search studies published in Korean contexts, the limit of ‘exp Republic of Korea’ or Korean-related terms have been applied. A search strategy has been developed for Ovid-MEDLINE and is shown in online supplemental appendix A.
Supplemental material
Stage 3: selection of eligible studies
The reference software programme, EndNote (EndNote X9, Thomson Reuters, New York, USA), will be used to manage articles and remove duplicate references. Two independent researchers (H-jS, S-IP) will select studies according to the eligibility criteria. The selection process will be as follows: (1) titles and abstracts of retrieved records were screened to identify relevant studies and (2) full text of eligible articles were retrieved and assessed. Disagreements will be discussed and consensus will be achieved by the research team. Successful consensus processes on the criteria for selection of eligible studies will follow the guiding principles:
Domain being studied: dimensions of resilience in family caregivers of people with dementia, regardless of the type of dementia. That is, various types of dementia may include Alzheimer’s disease, vascular dementia, dementia with Lewy Bodies and so on.
Participants/population: family caregivers characterised as a family member who provides informal care to a person with dementia. Studies about resilience in professional caregivers will be excluded.
Intervention(s): interventions to improve resilience or address hardiness for caregivers caring for patients with dementia.
Main outcome(s): (1) definitions/concepts (or dimensions of) resilience in family caregivers of people with dementia, (2) reliability and validity of any measurement instrument that has been used in informal family caregivers with dementia, (3) factors associated with resilience and (4) the resilience or coping responses improved through the intervention.
Types of sources of evidence: this scoping review will consider quantitative studies. Grey literature will include dissertations or theses published in the databases. Inclusion criteria will be the following criteria: empirical and theoretical studies, published in English or Korean, and only studies published in 2000 or later in order to reflect current Korean healthcare and social contexts. Research regarding qualitative studies, commentaries, review documents, case studies, systematic reviews, integrative reviews and literature reviews will be excluded.
Stage 4: charting the data
Data charting, referred to as the data extraction process, provides insight into an analytical and descriptive summary of the results consistent with the objectives of the scoping review.47 We will use structured data charting forms to gather pertinent information, including study design, sample size, conceptual/theoretical framework, instruments used to measure resilience, reliability and validity of resilience measures, factors significantly affecting family resilience, intervention, control, outcomes and study findings. One researcher will extract data and another researcher will recheck data charting. Any disagreement will be resolved through discussions with two other researchers.
The data extraction table produced will include at least the following key elements:
Author(s).
Year of publication.
Study design (eg, cross-sectional study, non-equivalent control group pre–post test design, one group pre–post test design).
Studied population(s) (eg, dementia type, severity of the dementia, relationship with the patient).
Methodology/methods (eg, sample size, conceptual/ theoretical framework).
Properties of measurement instruments used to measure resilience (eg, name of scale, number of items, number of dimensions, type of response, factors and subscale, reliability, validity).
Contents of resilience intervention programme for family caregivers.
Key findings that relate to the scoping review questions (eg, factors affecting resilience, factors influenced by resilience and feasibility or efficacy of intervention programme).
Stage 5: collating, summarising and reporting of the results
The purpose of this scoping review is to describe the findings in detail and summarise the research49 regarding resilience among Korean family caregivers for people with dementia. Additionally, gaps in the research will be identified and reported. This scoping review will also offer recommendations for future research, identify where more detailed investigations are required, and disseminate the information by drawing conclusions from existing literature. Based on the scoping review methodology described by Arksey and O’Malley,46 47 the risk of bias assessment will not be conducted.
For data synthesis, the main points from existing literature will be extracted and then compared. A descriptive summary will accompany the tabulated and/or charted results in order to describe the results of our scoping review questions. The tables will display the results based on study publication year and study designs, care recipient characteristics (diagnosis, severity), properties of resilience measures, factors significantly affecting resilience with family caregivers, interventions to improve resilience of Korean family caregivers, control group, outcomes and study findings. In addition, a narrative description of study results will accompany the descriptive presentation of the results by grouping the data into summaries of review questions for better exposition of the findings.
Patient and public involvement
No patients will be involved in the scoping review.
Ethics and dissemination
The purpose of this scoping review is to provide an overview of the existing literature with a focus on identifying, examining and evaluating research information regarding theories, measurements, correlates and outcomes, and contents of interventions for resilience of Korean family caregivers for people with dementia. South Korea, the fastest ageing country, faces a rapid growth of dementia—a major public health concern. In addition, Korean families and society must deal with the physical, psychological and economic burden of caring for people with dementia. Therefore, improving the resilience of family caregivers with patients with dementia is essential for strengthening family adaptation in chronic illness. In addition, improving resilience can also improve the physical, psychological, and mental health and quality of life for people with dementia and their family caregivers.
The results of this scoping review will summarise healthcare research regarding resilience in Korean family caregivers for people with dementia. This study will serve as important evidence for the development of culturally appropriate resilience measurements and interventions for Korean family caregivers of people with dementia in the future. It will also be informative for researchers, healthcare providers, public health agencies and government agencies interested in the issue of dementia. Because the scoping review methodology consists of reviewing and collecting data from the published literature, this study does not require ethics approval. The results of this scoping review will be submitted for publication in a scientific journal.
Ethics statements
Patient consent for publication
References
Supplementary materials
Supplementary Data
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Footnotes
H-JS and M-JC contributed equally.
Contributors All authors read and approved the final manuscript. H-JS, M-JC, S-IP and J-hP: Conceptualised the study. H-JS: Analysed the data. H-JS, M-JC, S-IP and J-hP: Interpreted the data. H-JS and M-JC: Wrote the first draft. J-hP: Administrated the study and revised the draft. J-hP takes responsibility for the decision to publish and attests that all listed authors meet authorship criteria.
Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.
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.
Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.