This review adopts a narrative synthesis approach. Narrative synthesis approaches systematic reviews by using words and texts to synthesize and explain findings from a combination of disparate study designs [40]. As a systematic approach which favours the presentation of findings from theoretically established literature within an area of interest, it is useful in summarising the current state of knowledge about a review question [40]. In this review, the aim is to identify any existing literature and current knowledge about the experience of informal caregivers who provide care to people with moderate to advanced dementia within a domestic home setting.
In consistency with addressing areas within the scope of interest, exploration of the key review question will be conducted within the contexts of dementia, informal caregivers and domestic home setting. The main findings from the synthesis of identified studies will then be used in exploring these experiences within the moderate to advanced stages of the disease within the domestic home setting. By adopting an iterative approach in the process, the link between the data from the findings and the individual studies identified will be mapped [40]. The criteria for identifying which studies to include will also be guided by the different components within the review question.
Review aims and question
The aim of this review is to explore informal caregivers’ experiences of home-based caregiving for people with a moderate to advanced dementia as the review question is “How do informal caregivers describe their experience of providing home-based care for people with moderate to advanced dementia?”. Many tools have been suggested on how reviews such as this may be conducted. This review seeks to explore a broader account of informal caregivers’ experiences of dementia home-based caregiving. As such, the question coverage needs to be extensive within this scope of interest [35]. The SPIDER (Sample, Phenomenon of Interest, Design, Experience, Research type) approach, a qualitative tool for evidence synthesis will therefore be used in question definition and systematic literature interrogation. The selection of this tool is based on its specificity in investigating a defined sample’s experience of a phenomenon [32], and the possibility of achieving results of more heterogeneous nature [11].
Inclusion and exclusion criteria
Domain
Studies will be included if they are related to experiences of informal caregiving for moderate to advanced dementia.
Study characteristics
This review will consider all research types including evidence from qualitative, quantitative and mixed-methods studies. Only qualitative evidence from studies of qualitative or mixed methods design are of interest, but no exclusion will be defined based on study type. All research evidence published in the English language from 1984 to present will be eligible for inclusion, given the reported increase in the diagnosis of dementia within that period. However, the possibility of achieving review objectives is dependent on the development of a clear review question and setting inclusion criteria [2,42,45]. Precision in framing the question therefore ensures that the population of interest are included [7], and the review question coverage is broad and extensive within the scope of interest [35]. See table 1.
Table 1: Inclusion and exclusion criteria
Inclusion Criteria
|
Exclusion Criteria
|
Type of papers: peer-reviewed empirical papers, qualitative papers including case studies and mixed-methods (both telephone and postal surveys are acceptable only if open-ended questions are asked)
|
Papers that are not primary research e.g. systematic reviews, meta-analysis
|
Language of papers: English
|
Papers in other languages
|
Date: published between 1984 and present
|
Papers were written before 1984
|
Population of focus: unpaid family members or informal caregiver
|
Population of focus relates to other groups of carers e.g. paid carers, professionals
|
Age group: 18 and above
|
Below 18
|
Primary illness of interest: moderate to advanced dementia
|
Other illnesses
|
Setting: domestic home-setting, unpaid home-based care
|
Other formal care establishments where care provision is paid for
|
Focus of papers: current experiences or views or needs of family caregiver
|
Focus on the views of others, or where death has already occurred
|
Sample
Informal caregivers are described as the family members, friends, relatives or anyone who provide significant care for an ill person [52]. These may be people related through committed heterosexual or same-sex partnerships, birth or adoption and others who have strong emotional and social bonds with the person receiving care. Only those acting as caregivers in an unpaid capacity will be considered. Other carers who may, or may not be family members, will be defined as lay, unpaid people in a close supportive role, who share in the illness experience of the person receiving care. Literature on other carers who do not fall within this broad definition will be excluded.
Phenomenon of interest
The context of interest is specific to dementia caregiving at the moderate to advanced stage within a domestic home setting. As such, it is necessary to distinguish between the home setting as a place where the person with dementia lives primarily, and other establishments where care provision may also be given, such as care homes. For the review, the informal caregiver may or may not be co-resident with the person with dementia within the home setting. Therefore, only literature on informal caregivers caring for people with a moderate to advanced dementia within this defined setting will be reviewed.
Design
Qualitative evidence collected from interviews, observations and surveys from studies adopting either a qualitative or mixed-method design.
Experience
Subjective experiences, such as views, opinions, attitudes and informal caregivers’ reasons for continued caregiving within the home setting for people with a moderate to advanced dementia will be explored. Accounts of the duration of time spent caregiving and caregivers’ feelings or emotions during care provision will also be of interest. Examples of these may include the duration of time spent providing care, relationship-based factors, isolation and feelings of guilt experienced. Only those experiences relevant to caring for people with moderate to advanced dementia will be reviewed and other experience aimed at the general population or other illnesses will be excluded.
Research type
Research adopting either a qualitative or mixed methods design which is described in terms of exposure to specific elements of caregiving responsibilities leading to a noticeable change in behaviour or wellbeing of the sample [44]. For example, this may include an indication of the duration of the exposure to which the informal caregivers were subjected, which may or may not cause a change to their health status.
Data sources
An initial scoping search of potentially relevant literature will be conducted to determine the distribution of relevant studies from available sources. Additional search will be conducted to identify literature in the following databases: MEDLINE Complete, CINAHL, EMBASE, PsycINFO, Web of Science, and Academic Search Complete from 1984 to present. Reference lists of included papers will also be manually searched for additional relevant citations. Further searches will also be conducted on the internet for grey literature, dissertations and theses.
Search strategy and process
A search will be conducted by the author. The search terms and strategy will be checked by two reviewers (CW and KF), who are familiar with the domain of dementia and care provision. The search strategy will be tailored for use with each database, using Boolean operators, truncations and Medical Subject Heading (MESH) as appropriate for each database. This strategy will use a combination of relevant keywords and period covered in all searches will be from 1984 to the present day (see table 2). The search terms used are shown in table 3.
Table 2: Search strategy
Search strategy
|
MH “Dementia+” OR TX dement* OR TX alzheimer * OR TX “lew* bod*” OR TX FTLD OR FTD OR frontotemporal OR vascular dement* OR mixed dement*
|
AND TX carer* OR TX caregiv* OR TX care-giver OR TX spouse-caregiver*
|
AND MH “Qualitative Research+” OR MH “qualitative studies” OR MH “Focus Groups” OR MH “exploratory+” OR MH “qualitative interview+” OR MH “ethnography+” OR MH “ethnographic research” OR MH “content analysis” OR MH “Grounded theory*
|
Table 3: Search terms
Caregiver terms
|
Dementia terms
|
Carer*
|
Dementia
|
Caregiv*
|
Dement*
|
Care-giver
|
Alzheimer*
|
Spouse-caregiver*
|
Lew* bod*
|
|
FTLD
|
|
FTD
|
|
Frontotemporal
|
|
Mixed
|
|
Vascular
|
FTLD: Frontotemporal lobar degeneration; FTD: Frontotemporal dementia
Study selection process
The criteria for paper selection will follow the stipulated inclusion and exclusion criteria. Only the author will be involved in the initial paper selection. All citations will be imported to Endnote and duplicates removed before screening. Identified studies will be screened by the two reviewers, CW and KF to ascertain that the stated inclusion criteria are met. Reviewers will not be blinded to the author’s detail and further assistance will be sought from the librarian at Lancaster University if required. Titles and abstracts will be screened in the first stage of the selection process, to exclude ineligible studies and remove duplications. Full text of identified papers will then be retrieved by the author, and a PRISMA-P (Preferred Reporting Items for Systematic Reviews and Meta-Analysis Protocols) flowchart will be generated as recommended by [33]. This is a comprehensive approach for showing the different stages of searches and how papers were selected for inclusion in the review.
Data extraction
Guidance from [40] will be followed in data extraction as well as in appraising the quality and robustness of the synthesis. In line with the search process, the decision on which data to extract would be guided by the review question, as the definition of these elements differentiates between interpretations across disparate settings and populations [40]. Key data such as author’s name, publication origin and year, setting, population and sample size, aim and objectives, illness stage, research design, data collection method and main findings, which clearly show the caregivers’ experiences would be extracted from each paper selected by the review author as in table 4. A narrative summary of the synthesis will also be given as a critical reflection on the findings of each study. This would include the methodological approach followed in the synthesis, as well as the quality of data used. Any assumptions made would also be declared to ensure the credibility of the review findings.
Table 4: Data extraction table
Field
|
Description
|
Author, date, country
|
- First author’s name, date of publication and country of origin
|
Setting
|
- The setting of care provision
|
Population/sample size/sampling method/illness stage
|
- Caregiver’s distinctive characteristics of
- Sampling method
- Stage of illness
|
Aim/
Objectives
|
- Stated aims and objectives of the study
|
Research type/ research design
|
- Research design type
|
Data collection & analysis
|
- Data collection method employed
|
Findings
|
- Study findings showing caregiver’s experiences
|
Quality and bias appraisal
Selected studies will be appraised by the author using the Hawker et al. [21] tool to evaluate the risk of selection bias. It is considered that the conclusions reached in reviews may be influenced by the results of individual studies [40]. It is suggested that grounds for appraising the quality of individual studies considered for review may, therefore, be defined by individual reviewers. The Hawker et al. [21] tool is selected based on its non-discriminatory capability in assessing the quality of included papers, as well as the adaptability of its structure to a variety of methodologically distinctive designs. It uses a checklist of 9 categories for assessing the quality of selected papers. The first 7 categories evaluate the trustworthiness of the paper being assessed, while the last 2 represent individual paper’s relevance. The score allocated to each study represents its weight and demonstrates the relevance, validity and appropriateness of each paper in comparison to others also selected.
On the Hawker et al. [21] tool, a maximum of 36 points is possible as a range for categorising and determining paper’s quality according to their methodological rigour. Each paper will be assigned a rating of ‘good’ (4 points), ‘fair’ (3 points), ‘poor’ (2 points) or ‘very poor’ (1 point) in the nine categories. It is considered that allocating the ratings as ‘A’, ‘B’, ‘C’, and ‘D’ instead will bring more clarity. As suggested by [20], a high-quality paper may be rated ‘A’ and scored between 30 and 36 points, a medium-quality paper may be rated ‘B’ and scored between 24 and 29, and a low-quality paper may be rated ‘C’ and scored between 9 and 24. To reduce ambiguity in this review, however, grading for a low-quality paper will be modified to a range between 9 and 23. It is not envisaged that this adaption will impact on the gradings as originally guided by [21] (see Additional file 1). The two reviewers, CW and KF will check the result of the appraisal process to ensure the appropriateness of this tool.
Data synthesis
This review adopts a narrative synthesis approach following the guidance by Popay et al. [40] for all study types identified. The use of Nvivo software will be enlisted to manage the synthesis of the data into themes. Narrative description of patterns derived from the findings from reviewed literature will be used in understanding what influences the descriptions attributed to the experiences of informal caregivers. This will involve grouping of studies and making commentary comparisons between them, using their characteristics such as their data collection methods, authors, aims and their reported findings. For clarity, the steps to undertaking the narrative synthesis by [40], suggests that the synthesis of literature be conducted by (a) identifying the review focus, (b) specifying the review question, (c) identifying studies to include (d) data extraction and quality appraisal (e) synthesising of the findings and (f) reporting of findings.
Data management
Endnote bibliographic management software will be used in managing all searches. Using this software, all identified papers can be directly imported and duplicates can be easily identified and removed.
Potential strengths and limitations
This review considers that variation of accounts contributes to how the caregivers’ experience is explored in future research. As such:
- This may enable gaps in current knowledge to be highlighted within the wider context of caregiving in the domestic home setting.
- As a qualitative endeavour, the review will provide a rich understanding of people’s accounts. Transferability of those accounts across clearly defined settings and contexts may therefore be appropriate
- Full justification of accounts may be difficult as accounts of experiences will be extrapolated from a wider context of discussions within the reviewed literature.
- Generalisation of findings at either of the moderate or the advanced stages may also be difficult.