The Employment and Caregiving Experiences of Child Caring for a person with Mild Cognitive Impairment/Early On-Set Dementia (MCI/EOD): A Scoping Review Protocol
Creators: name: Kokorelias, Kristina
name: Astell, Arlene
Publisher: name: Open Science Framework
Year: 2022
Subjects: subject: Social and Behavioral Sciences

description: The Employment and Caregiving Experiences of Child Caring for a person with Mild Cognitive Impairment/Early On-Set Dementia (MCI/EOD): A Scoping Review Protocol Abstract: Introduction: Persons with mild-cognitive impairment and early on-set dementia (MCI/EOD) are becoming an increasing amount of the population. Many caregivers to persons with MCI/EOD are child caregivers. This means we can expect a rise in the number of people caring for persons with MCI/EOD in the workforce and the number of people MCI/EOD in the workforce, presenting a new host of challenges for them, their employers and society in general. This will require a shift in perspective for caregiver support to also include the management of persons with MCI/EOD’s vocational situation as well as the situation of the caregiver themselves. Methods and analysis: Arksey and O’Malley’s scoping review methodology framework and the Preferred Reporting Items for Systematic Reviews and MetaAnalyses extension for Scoping Reviews Checklist will guide the conduct of this scoping review. This scoping review will consist of published and grey literature. Comprehensive searches of relevant electronic databases (e.g., MEDLINE, EMBASE) will be used to search for academic literature. We will review the reference lists of included materials to identify other literature appropriate for inclusion. Two reviewers will pilot-test the screening criteria and data abstraction form. They will then screen all citations, full articles and abstract data in duplicate independently. The results of the scoping review will be synthesised thematically. Specifically, we will report on 1)the support and service needs of child caregivers to persons with MCI/EOD 2) existing interventions to support child caregivers to persons with MCI/EOD 3) the employment experiences of child caregivers to persons with MCI/EOD (including support strategies). Additional information may also be reported on. Ethics and dissemination: This scoping review will synthesise the information around the support and service needs of child caregivers to MCI/EOD, the characteristics and outcomes of existing interventions as described in the literature. As this is a scoping review ethics approval is not indicated. Findings from this review will be useful to clinicians and health service researchers and published in a scientific journal and conference presentations. Strengths and Limitations of this Study • This review is guided by a well-known methodological framework. • This review includes a comprehensive literature search including grey literature. • Inclusion criteria are broad to give the review breadth and comprehensiveness. • We will use two independent investigators for all phases of the review. • We will only be including English-language articles published since 1990. Introduction: Current predictions suggest that by 2030 there will be 75 million people across the world living with dementia, almost double the number in 2015 (1). Another substantial proportion will be living with Mild Cognitive Impairment (MCI), which has an estimated prevalence of 16 to 20% in the general population (2) . The term MCI has been used to describe the transitional phase between normal functioning and Alzheimer’s disease (AD) or other forms of dementia (3). Alongside these developments, the identification of cognitive impairment, including MCI/EOD is improving such that people are being identified earlier and at younger ages ass(4-6). As the majority of people with MCI/EOD are supported by family members (7), this means that we can expect a rise in the number of child caregivers who provide care to parents with MCI/EOD (8). While there has been extensive recent literature on spousal and child caregiver experiences for persons with AD (e.g. Kokorelias et al (9), Ar et al. (10), Miller et al (11)), there is a much smaller body of research examining the experiences among adult children of parents with MCI./EOD. In particularly, there is a lack of information on their support and service needs (12). Appropriate support to child caregivers may help offset the physical, emotional, and financial costs incurred as a result of increased caregiving responsibilities following an MCI/EOD diagnosis (13). However, there needs to be an understanding of child caregivers’ experiences and their support needs to inform support services and interventions (12, 14). An existing review aimed to explore the needs of family caregivers to persons with MCI (12), but did not focus exclusively on child caregivers who may have different needs than spousal caregivers. A recent review by Poole et al. (15) that did focus exclusively on the experiences and needs of child caregivers to MCI did not include those with EOD. This review also only included qualitative studies and thus did not include intervention studies focused on addressing caregiver needs.The reviews did not also explore interventions or services to help meet these support needs. The greater awareness and testing for age-related cognitive changes and age eligibility increases for state pensions, and removal of default retirement ages all increase the potential for individuals to develop MCI/EOD while in employment (16, 17). Similarly, the majority of child caregivers to persons with cognitive impairments are in employment themselves. Working family caregivers to persons with cognitive impairments tend to have physical and mental health problems (e.g., depression) (18, 19). Child caregivers must manage conflicts between their job and family responsibilities (18, 20). Consequently, working caregivers experience increasing work productivity loss miss opportunities for advancement, and quit their jobs (18, 21, 22). Yet, the employment of child caregivers and their care recipients with MCI/EOD have been largely overlooked in research, policy, and the development of support services and interventions. Specifically, the employment opportunities of child caregivers and their consequential support needs are unknown. The experiences of them supporting their parent’s employment and related support needs to help them sustain that aspect of their caregiving role is not known. Objectives: The objectives for this scoping review on caregiver experiences, support needs and interventions to support child caregivers to persons with MCI/EoD are as follows: 1) Map and categorise the extent, range and nature of evidence available in peer-reviewed and grey literature examining the employment experiences, caregiving experiences, services and support needs of child caregivers to persons with MCI/EoD 2) Identify service interventions aimed at supporting child caregivers to persons with MCI/EoD, as well as treatment gaps to guide future research, policy development and service provisions. Methods and analysis: Study Design A scoping review methodology, which is a type of knowledge synthesis used to identify areas of consensus and gaps in knowledge, was chosen as the study design (23). Unlike systematic reviews, scoping reviews do not aim to assess the rigour of given research findings and allow for a more expansive, exploratory approach (23). The protocol for this scoping review is drafted based on Arksey and O’Malley’s five-stage methodological framework statement (24) and the Preferred Reporting Items for Systematic Review and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) (25). Arksey and O'Malley’s method includes the following steps (1) identifying the research question, (2) identifying relevant studies, (3) screening and selecting studies, (4) charting the data, (5) collating, summarising and synthesising the results and finally, (6) consulting with stakeholders (24). Step 1: Identifying the Research Question Scoping reviews traditionally comprise of broad research questions(24). Through consultation with our research team, we identified the following broad research questions: 1) What are the support needs of child caregivers to persons with MCI/EOD ? 2) What types of support services and interventions are child caregivers to persons with MCI/EOD? 3) What do we know about the employment experiences of child caregivers to persons with MCI/EOD (including support strategies) 4) What do we know about the experiences of child caregivers to persons with MCI/EOD in supporting their parents’ employment? Step 2: Identifying relevant studies The comprehensive search strategy will be developed in collaboration with the study’s principal (AA) and coinvestigators (KK), a hospital informational specialist/ librarian at the University Health Network (JB) in Toronto and the research assistants who will help conduct the scoping review. Searches for academic literature will be conducted in Ageline, CINAHL, Embase, Ovid MEDLINE(R) (including Epub Ahead of Print, In-Process and Other Non-Indexed Citations, Ovid MEDLINE(R) Daily), Pubmed, OTSeeker, PeDRO, PsycINFO and Scopus. A cross section of databases that include the range of literature spanning healthcare, occupational therapy, social work and other social sciences was selected. To ensure that the scoping review captures the breadth of literature, the research team will also extensively hand-search reference lists of all included studies. We define grey literature as theses and conference presentations and proceedings. The search will cover 1990 up to the present. This limited date range was selected as we are interested in recent or current interventions involving families in order for this to be most relevant for stakeholders. The final search strategy will be peer reviewed using Peer Review of Electronic Search Strategies guidelines (26). Bibliographic information of all references will be managed using EndNote X10 (27). Systematic de-duplication will be carried out using the Bramer method for Endnote users (28). Step 3: Screening and selecting studies We will use a transparent, iterative team approach to refine the search strategy and this will be an iterative process to finalise inclusion and exclusion criteria (29). First, we will screen the titles and abstracts, followed by full-text review of the selected articles. In both levels of screening, two investigators will independently screen the title and abstract of all retrieved citations for inclusion against the set of predefined inclusion criteria. Weekly meetings will occur between the two reviewers to discuss any ongoing concerns and discuss any conflicts. In the case agreement cannot be made between the reviewers in the selection process, a third team member will be consulted to form a consensus. Once all articles are reviewed, the reference lists of all included articles will be searched by the two reviewers. For the purpose of this review, articles will be included if: 1. The majority of participants were child caregivers to persons with MCI/EOD AND 2. Discussed the employment or caregiving experiences of child caregivers to persons with MCI/EOD OR 3. Discussed the support needs of child caregivers to persons with MCI/EOD OR 4. Discussed an implemented service or intervention to support child caregivers to persons with MCI/EOD. Studies will be excluded if they: 1. Focus primarily on the experiences of spousal or other family caregivers and therefore limit the voices of child caregivers to persons with MCI/EOD 2. Involve the experiences of caregivers to other types of dementia (e.g., Alzheimer’s disease, frontal temporal dementia) 3. Describe a hypothetical intervention or service that has not yet been implemented. Systematic, scoping and literature reviews will be excluded. Covidence online software will guide the process of screening and selecting of studies (30). Step 4:Charting Data Our data will be charted and sorted according to key themes using a qualitative thematic analysis approach (31). To ensure consistency amongst the reviewers, a data extraction form will be developed and piloted on a subset of studies. Two independent reviewers will use Covidence software to chart data from all included studies and reports. Charting the data is an iterative process (24, 29), and therefore changes to the form may be necessary prior to the extraction of all articles. Data to be extracted includes, but is not limited to, publication type (e.g., journal article or grey literature), experiences of caregivers, support needs of caregivers, intervention characteristics (e.g., professional designation of the patient navigator, components and services provided), intervention primary setting (e.g., primary care), caregiver characteristics (e.g., age, sex, gender, employment status, employment status), care recipient characteristics (e.g., age, sex, gender, employment status, employment status), intervention delivery method (e.g., face-to-face), intervention outcomes. Step 5: Collating, summarising and synthesising the results We will follow the advice of Levac et al (29). First we will (1) analyse extracted data using a numerical summary analysis and qualitative thematic analysis; (2) we will disseminate the results of the scoping review; and (3) within our dissemination and afterwards, we will discuss implications for future research, policy and practice(29). We will also report on noteworthy gaps in the literature. Step 6: Consulting with Stakeholders Caregivers and persons with MCI/EOD were not involved during the design and development of this scoping review protocol. However, our research team regularly meets with advisory members that consist of caregivers and persons with MCI/EOD as well as employers to persons with MCI/EOD. We may consult upon this advisory member network during ‘Stage 6’ to provide insights into supplement our literature review findings. We anticipate holding regular stakeholder consultation meetings to present preliminary findings and to solicit feedback to support the development of future caregiver and employment support programs. Ethics and dissemination: Results from this review will be published in a peer-reviewed journal. Results may also be reported at local, national and international conferences on dementia. Ethics approval is not indicated as we are not collecting primary data. Authors’ contributions: KMK and AA conceived of the idea. AA, KMK and JB refined the study aims and study methods. KMK wrote the first draft of the protocol. AA and JB contributed meaningfully to the drafting, editing and approval of the final manuscript