Brainstorming.

The brainstorming phase allowed us to: a) identify in the ScR the most suitable type of study for answering our research questions; b) adjust and improve all the points enumerated above. To begin with, each author assessed the structuring level of our initial questions and goals independently of the others, based on the several available scoping reviews and his/her own previous knowledge; this was followed by a brainstorming session which helped us to discuss our opinions, especially in relation to the possibility of addressing systematic reviews. We were in agreement on the main lines, i.e. that such a set of non-stringent questions and goals could be appropriate for an extensive investigation of the reference literature. Moreover, when compared to the seven goals listed by Lockwood et al. (S2 Fig), our initial purposes turned out to be very appropriate for a scoping review. We were able to confirm that most of those seven goals could be pursued and that this type of study could be undertaken. The brainstorming phase, i.e. an in-depth debate about the extent to which our questions should be defined, also allowed us to refine these and generate a final list of questions, which are: 1) to what extent are such families impacted by socioeconomic deprivation? 2) how much does the cost of care for the old contribute to the economic hardship faced by care recipients or families? 3) how thoroughly does the reference literature deal with these issues? 4) what are the most commonly found definitions of the “socioeconomic deprivation” concept in the reference literature? Finally, our initial purposes were slightly revised and definitively fixed on the basis of these ‘new’ questions.

Definitive aims.

This study aims to: 1) identify the main key concepts and definitions used in the literature focused on the concepts described in S1 Fig; 2) pinpoint any little explored conceptual areas or countries where research needs to be strengthened; 3) examine how socioeconomic deprivation and related phenomena are conceptualized and debate whether the main definitions are consistent with our concept of “multidimensional deprivation”; 4) identify and report on the main existing results and insights provided, particularly those that stakeholders and policymakers can benefit from, e.g. in terms of social innovation.

This broad scope of objectives allowed us to filter through as many studies and evidence as possible, regardless of the countries in which the studies were conducted.

Initial keywords.

A list of keywords has also been identified in the planning stage, which included: Long-term care, older (elderly) people, caregiver, family caregiving, impoverishment, deprivation, socioeconomic deprivation, economic, economic impact, poverty, and multidimensional poverty, since many researchers frequently use the term “poverty” as a synonym for “socioeconomic deprivation” in their articles. As detailed in the chapter referring to the “Protocol”, these keywords were used to begin investigating all the relevant studies. The set of keywords is fully identified by the research team.

Writing the protocol.

This protocol is being drafted in accordance with the aforementioned guidelines. It mainly aims to illustrate the study’s methodological framework and the types of materials and data to be used or obtained, such as: variables to be analyzed, gaps to be identified, and summary charts to be created. To this end, every effort has been made to make the study’s content clear, methodologically reliable and adequately planned. The protocol also clarifies the link between questions and objectives (see previous paragraphs). Finally, it aims to describe how the unfinished steps will be completed.

Selection process and eligibility criteria.

Thus far, all articles were imported from the following databases (sorted by number of items found): PubMed, Wiley Online Library, Web of Science, and Scopus. We also consulted the main research library of the University of Cambridge (Cambridge University Library), which provided some useful references. All data is stored in cloud-based archives (Mendeley/EndNote X9).

The participants, concepts, context (PCC), and eligibility criteria that underpin this study are described below.

Participants. older adults in need of LTC and their family caregivers (both the family members who live with the older people and the ones who provide indirect assistance are included). We refer, in particular, to the so-called oldest-old people who cannot perform routine activities of daily living or self-care, regardless of their type of health problems. Moreover, the number of participants is not limited by the type of family or the country in which they live; both single-parent families (e.g. older people living alone) and married couples, with or without adult children, are included.

Concepts. a) the socioeconomic deprivation of impaired older people provided with LTC; b) the socioeconomic deprivation of their families. In detail: 1) “Older adults in need of (or provided with) LTC” are the ones affected by a reduced ability to perform routine activities, such as washing or bathing, dressing, feeding, transferring, and mobility, owing to age-related functional decline or chronic health problems. The fact that they depend on the treatment they need makes LTC indispensable; 2) LTC refers to services that help people in need of care, especially the old, with their physical and emotional needs over an extended period of time. LTC is by far the greatest health-care need of older adults and includes informal care [27]; 3) “informal care” is generally referred to as “unpaid care”, mainly provided by a person connected to the older adult being taken care of, e.g. a spouse, child, or other relative. Nevertheless, the growing need for care among home-dwelling older adults is leading to the involvement of a higher number of people to support the old; 4) the term “family caregiving” represents the situation in which older adults are cared for by one or more family members, defining families in the broad sense, i.e. as individuals with a specific personal (S1 Fig). Family caregivers, in fact, can manage and provide home-based LTC both directly and indirectly; 5) the term “socioeconomic conditions” synthesizes a host of detectable factors, i.e. family assets, income, in work-benefits (if any), and savings and social ties related to the socio-demographic characteristics of family members. All of these are elements to which we must attribute the worsening or containment of LTC’s economic burden. In the case of illness, the combined effect of a shortage or absence of these factors may alternatively lead to: a) “catastrophic health expenditure”, which occurs when out-of-pocket health expenditure exceeds a certain ratio of household income to health spending; b) “economic impoverishment”, which occurs when average household consumption falls below the international or national poverty threshold as a result of care expenses.

Context. all types of long-term care services for older people, especially informal care, in all geographical areas (both western and non-western countries). Nevertheless, the search process is conditioned by the considerable number of relevant studies conducted in low- and middle-income countries (respectively: LICs and MICs).

Eligibility criteria. in addition to the basic criteria illustrated above (PCC), it must be specified that: a) all studies investigating factors and policies that link activities, situations, or conditions such as old age, poor health, long-term care, health-related behaviours, and socioeconomic deprivation of families with older members affected by ADL limitations are included; b) studies proposing solutions to the economic problems triggered by health needs are particularly taken into account; c) special consideration is given to the ones outlining socially innovative solutions; d) all types of quantitative studies are included; e) qualitative studies and mixed methodologies, although scarce, are also included; f) all types of countries are considered in order to see whether there are any methodological differences that are somehow linked to the specific type of context; g) primary and secondary studies are considered; among the latter, systematic and scoping reviews are also taken into account; h) all selected relevant articles are no older than five years; exceptions to this rule are those selected due to the pertinence of the sources, of up to a maximum of ten years; i) empirical publications in peer-reviewed journals are preferred; j) all selected articles are written in English. Focus on English literature allows to include the main scientific literature, according to the most common strategy for literature review studies. The relevance of the topics studied for not English-speaking areas and countries represents however an invitation to realise future studies including different languages.

Scoping review and evidence source details.

The features characterising the scoping review and the sources referred to can be summarised as follows:

1. Scoping review title: Ageing, Long-Term Care, Poverty, and Socioeconomic Deprivation of Families: results from a scoping review;
2. Types of evidence sources: scientific journals; mainly research articles;
3. Details of evidence sources: we will list a number of items such as authors, publication dates, journal titles, volumes, and materials (if any) attached to the selected articles. All this information will be published at the end of the selection process;
4. The year of publication of the most recent sources among those selected: 2020;
5. Countries: we will also compile a list of countries where the selected studies were carried out. All this information will be published at the end of the selection process;
6. Types of evidence: most of the findings that we typically expect result from quantitative studies, often reinforced by the application of indicators (e.g. of disability or socioeconomic deprivation). For the most part, these studies turn out to be conducted on the basis of secondary data, resulting from both cross-sectional and longitudinal studies. Qualitative studies are uncommon. However, the research team will try to integrate qualitative and quantitative findings included in the study, in order to allow a more in-depth understanding of the phenomenon, as ensured by qualitative studies. As for quantitative studies, measurements of the probability of experiencing genuine economic impoverishment and social exclusion (after adjusting for age and income), as well as the degree of association between socio-relational deprivation and health problems, are generally the most common outputs;
7. Concepts and context of selected studies: the ways in which it is possible to care for older people in need of LTC in all countries, especially in middle- or low-income countries (MICs; LICs). The types of caregiver activities and the types of health problems of assisted persons are not indicated (bar a few exceptions). These studies mainly delve into: 1) the different shortcomings of national social protection systems; 2) the economic consequences that affect families; 3) the role played by social skills in order to avoid falling into material and social deprivation;
8. Participants in the selected studies: 1) caregivers: spouse or adult children (especially the ones cohabiting with the persons who need to be cared for, but this is not always specified); 2) care recipients: old, old-old and oldest-old impaired people; 3) families: all types of families (including those with adult children living elsewhere, although this is not clearly specified).
9. Details and results to be extracted from evidence sources:
   1. Measurement properties of Activities of Daily Living scales (ADLs) used by most national surveys [28, 29], e.g. need assistance, received assistance, duration, special equipment, and perceived level of difficulty; 2) Items and measurement properties of the Frailty Index used by some of the selected studies (56-items FI), e.g. disabilities, self-reported health conditions, hearing, eyesight, cognitive function, and depressive symptoms; 3) Measurement properties of the Index of Multiple Deprivation 2004, used to identify the most and the least deprived areas in the UK.

Initial selection outputs.

Thirty-five research articles were initially selected using PubMed and Scopus as a starting point, followed by Web of Science. This first selection included studies concerning the relationship between material and social deprivation and self-perceived well-being, or the connection between an early withdrawal from working life and family caregiving. The last articles offered us many insights into the economic situation of women in particular, and the level of decreased earning capacity of family caregivers in general. In any case, most of the selected articles deal with the issue of health inequalities among older people; others emphasise that it is easily possible to fall into material deprivation even in high-income countries (HICs), when faced with severe health problems. It also does not seem to us to be insignificant that some of the first articles we found indicated an urgent need to thoroughly revise the methods and techniques for measuring the impact of ageing on the economic situation of countries.

Second selection.

The additional keywords mentioned above turned out to be highly suitable as selection tools, since this second step allowed us to find many other relevant studies.

Together with those selected in the previous step, 63 research articles could be counted so far. The articles we are now finding are more focused on family economic difficulties and on how families act to ward off any type of economic impoverishment. What is striking is the fact that many older people around the world give up care or reduce it significantly. The drawing of a flow chart is planned in order to represent the entire search process in our final article. This graph will show how many articles were definitively selected, as well as how many were rejected and why.

Quality assessment: Data extraction.

Once the search process is finalised, we will begin to take note of the studies’ main features with the intention of identifying the extent to which the studies explain their aims, methods, and results. This process, which is referred to as “quality assessment”, consists of two sub-stages: 1) data extraction: data will initially be extracted as text variables using a dedicated data extraction instrument (S1 Table). All the main features of each article will be summarized on the basis of a classification grid made up of the following items: a) name of the authors; b) title; c) year of publication; d) keywords; e) type of study (e.g. national or government census, questionnaire-based survey); f) type of methodological framework (e.g. quantitative methods); g) type of techniques used in the data analysis phase (e.g. statistical analyses, type of interviews, focus groups); h) reporting of methods, i.e. how sampling methods and measurement tools are described; i) aims and type of results provided by the authors; j) type of country to refer to. Finally, all these articles will be labelled as “high relevance, medium relevance, or sufficiently relevant studies” (with respect to our purposes); 2) data coding: after being illustrated with a text string, each of the options of the aforementioned items will be summarized in a numeric code, or rather, paired off with a numerical label representative of a certain concept to refer to, e.g. “1” if the study is a questionnaire-based survey, “2” if the study is a secondary data-based survey, and so on (item 5). Item 6, which refers only to the methodological framework of the selected studies, will be represented like this: “1” if only quantitative methods are available, “2” if only qualitative methods are available, “3” if only mixed methods are available. This coding process transforms each item from a mere property to a variable. Such a process, which is usually referred to as “data coding”, is the most systematic way of synthesizing and re-presenting information and empirical objects. Once all the extracted information is each assigned a code, it will be possible to carry out a statistical-descriptive analysis. Microsoft Excel 2007 will be used to enter all coded data into a searchable database.

Data analysis.

We agreed to conduct a mixed method analysis, based on a descriptive quantitative analysis integrated by a qualitative (contents) analysis, with the intention of identifying and tracing the boundaries of overlapping or unexplored conceptual areas. We will also perform basic statistical analyses, such as univariate or bivariate analyses, in order to get the frequency distribution of some of the aforementioned variables and to obtain cross tabs, e.g. referring to the comparison between HIC care systems and LIC care systems. We will use the latest version of Maxqda to analyze all qualitative data. We will also try to conduct a meta-analysis, if possible, in order to combine all the main results concerning LICs (e.g. the tendency for health inequalities to rise) with the results of other countries, especially with regard to the problem of economic impoverishment as a result of the state of health.

Data synthesis and reporting.

To summarize the main findings, all data will be represented in table form and, when appropriate, in graphic form, in a manner that aligns with the purposes of this ScR. A narrative summary will describe how this study can be fully reproduced and how the data answers the research questions. Not too many images will be inserted, in accordance with Munn et al. The main significant differences between low-, high-, and middle-income countries, in terms of out-of-pocket medical expenses, life expectancy, and the working conditions of family caregivers, will be presented as a summary to help illustrate the different political contexts in which the problem of “unpaid care” can emerge (see “Table 3”).

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Table 3. Conducting and reporting: The third phase of the study and related outputs.

https://doi.org/10.1371/journal.pone.0273814.t003