Abstract
In this article, we present a scoping review of the evidence and discussions in the extant literature on long-term care for older people in Southern Africa, focusing particularly on patterns of knowledge production in the region. Findings indicate that while the number of publications has increased over recent years, empirical research in countries outside of South Africa is extremely sparse and underfunded, and there is no clear research agenda. Drawing on a political ethics of care perspective, we reflect on the lack of attention to issues of care and the positioning of care for older people within societies in the region.
Introduction
In the context of population ageing, a small but rapidly growing literature on the health, economic and social position, and needs of older people in the African region has emerged over the past decade (Aboderin and Hoffman, 2015). Much of this literature is focused on four issues and related policy agendas: economic vulnerability and the need for social protection; the social position of older people in the context of urbanisation and ‘modernisation’; the health status and needs of older people; and the provision of care by older people to younger generations. Issues around care provision for older people with long-term care (LTC) needs, whether by family (where the vast majority of care is provided) or institutions, seem at first glance to be largely absent from the literature and also largely invisible in policy debates in the region, where care appears to be viewed as outside of the state’s domain.
Given its important role in knowledge production and therefore agenda setting and policymaking, research work performs an important political function. It is therefore important to address the question of attention given by researchers and those who fund it to the needs for care by older adults and the degree to which research outputs provide the information and analytical frameworks necessary to drive conversations on care systems.
In this article, we present a scoping review of the evidence and discussions in the extant literature on LTC provision for older people in Southern Africa (Angola, Botswana, Eswatini, Lesotho, Malawi, Mozambique, Namibia, South Africa, Zambia and Zimbabwe). We have defined older persons as those aged 60 and above, in line with definitions used by the African Union (AU) and United Nations (UN). The review uses the World Health Organization’s (WHO’s) broad definition of LTC, which includes ‘all activities undertaken by others to ensure that people with, or at risk of, a significant ongoing loss of capacity can maintain a level of functional ability consistent with their basic rights, fundamental freedoms and human dignity’ (WHO, 2015), and incorporates both formal institutional and community care, and informal care provided by family and friends to people with capacity limitations.
Rather than focusing on research findings, as a systematic review would, this article focuses particularly on patterns of knowledge production and research focus in the region. Our intention is to understand what types of evidence and data are being gathered in this area, where and by whom they are being generated, and how (and if) they have been funded, and to pinpoint major areas – both substantive and geographical – where further evidence generation is required. Drawing on a political ethics of care perspective (Tronto, 1993), we also reflect on the politics and issues of representation in knowledge production in order to understand why we do or do not have certain knowledge, and how this is linked to broader priorities, discourses and ways of thinking (or not thinking) about care in societies in the region.
A lack of attention to the care of older persons
Given the African continent’s relative youth and other major competing challenges, development efforts by governments and development partners have mainly focused on younger populations, overlooking older people’s needs and vulnerabilities, as well their contributions to social and economic development in the region (Aboderin et al, 2020). LTC for older people in Africa is positioned within policy and popular discourse as falling within the domain and responsibility of the family and community, rather than the state. As Aboderin (2019) points out, policymakers are well aware that there are gaps in systems to support older persons, and the needs of older people (in areas from social protection to social support and LTC) are discussed in existing regional and national policy documents. However, this is largely framed in the discourse of a ‘breakdown’ of tradition and the failure of families to provide care in line with expected norms and values. Despite these discussions, a policy impasse continues due to prevailing gender norms, perceptions that formal LTC is culturally and normatively ‘un-African’, and a prioritisation of younger populations, who are seen as more likely to contribute to the development agenda (Aboderin, 2019).
As a result, the development and implementation of policies and systems around LTC for older people have been particularly neglected, and although Southern Africa has made more progress on addressing older people’s needs (most notably, in terms of pension provision), policies and residential and community-based services for older people and carers remain limited. Only South Africa has a formal LTC framework in place in the region (WHO, 2017; Aboderin, 2019).
Despite a clear normative preference for family- and community-based LTC, government efforts to support these forms of care are also very limited, and much of the support to families at the household or community level is provided through the initiatives of older persons organisations like HelpAge International, with very limited or no government funding (WHO, 2017; Nzima and Maharaj, 2020). The COVID-19 pandemic has also highlighted significant gaps in social protection and health and care provision for older people in Africa (WHO Regional Office for Africa, 2021).
Increasing pressure, however, is being placed on governments in the region to respond to the care needs of older people as part of their commitments to the Sustainable Development Goals (SDGs). In response to the 2002 Madrid Action Plan on Ageing (MIPAA) and the more recent UN Decade for Healthy Ageing 2021–30, the United Nations Department of Economic and Social Affairs (UNDESA), WHO, United Nations Population Fund (UNFPA), AU and other actors are actively encouraging and supporting policy development and implementation around ageing in the African region. Other regional initiatives led by the AU have also emerged, such as the African Charter on Human and Peoples’ Rights on the Rights of Older Persons in Africa, which is not in effect at the time of writing because, to date, it has only been ratified by Lesotho, Benin, Kenya and Ethiopia.
One major barrier to understanding and responding to the needs of older people and people who care for them in the region has been a lack of demographic, health and research data. There have been some important efforts to increase data availability on older persons through, for example, the WHO Study of Global AGEing and Adult Health (SAGE) and SAGE and International Network for the Demographic Evaluation of Populations and their Health (SAGE–INDEPTH) studies, which include South Africa (and Ghana in West Africa), and the Malawi Multiple Indicator Survey on Ageing (MISA). There is very limited data available on older people outside of these countries. Hamington (2018: 310) argues that ‘caring is a form of enquiry’, that ‘anything but the most superficial forms of care require knowledge’ and that the process of learning also motivates further care. If governments in the region are to achieve the goals of the UN Decade for Healthy Ageing, one of which is to provide and support responsive and effective LTC, knowledge (and therefore research) is needed. Significantly more evidence on the type, dynamics and contexts of care is essential for the design of appropriate policies and interventions that respond to a growing need for care that is culturally and contextually appropriate.
Re-prioritising the care of older persons with a political ethics of care
Tronto (1993) and others (Fisher and Tronto, 1990; Sevenhuijsen, 2000, 2003; Bozalek and Hooyman, 2012; Koggel, 2012; Fitzgerald, 2020) position care as a moral, social and political practice and disposition, and recognise society as inherently relational and interdependent. A political ethics of care within a society is constructed ‘through the way the state regulates and administers its subjects and through the discourses it constructs around care issues’ (Gouws and Van Zyl, 2015: 167). Rather than denigrating and fearing care dependency, an ethic of care acknowledges that dependency is, as (Kittay, 2011: 54) describes it, ‘a feature of all human life’. Despites its essential nature, care ethics theorists argue that care is undervalued in society and often invisible. They also argue that given the centrality of care in life, care work should occupy a more prominent position in society and that it is the responsibility of society to enable and support the work that takes place and dependent relationships that exist in care settings. In other words, states have a moral obligation to provide adequate care (Tronto, 1993).
Tronto’s four components of care (attentiveness, responsibility, competence and responsiveness), which has been extended by Sevenhuijsen (2003) to include trust, provides a useful framework for answering the question of how we can best provide care and grounds our engagement with knowledge production on care. Attentiveness refers to ‘noticing’ a need for care and, in the context of our work, what level of attention has been given to research to inform understandings around the need for care among older people. The notion of responsibility is defined in terms of responding to care needs and who is tasked by society as being responsible for these needs. Tronto (1993) positions the state as having not only a limited legal obligation, but also a moral responsibility, to provide care given the role that structural factors play in the need for care. For the purpose of this article, this concerns the extent to which governments are driving and funding research around care, and thus taking responsibility for care provision, as well as the extent to which research is exploring issues and discourses related to care responsibility in the region. Competence refers to the actual capacity of caregivers to provide adequate care within their context. Responsiveness is tied closely to attentiveness, in that it requires understanding, but specifically refers to listening and understanding the position of others (specifically the care receiver). Again, responsiveness requires information and, in the case of research data, data that are generated in participatory ways.
The article outlines the methodology employed for the scoping review, including the process of identifying, selecting sources and the data-charting process. It then presents an overview of the findings and discusses some of the implications for research and policy development in the region.
Methodology
A scoping review is a method used to assess the potential size and scope of available research literature, and can serve numerous purposes, including: mapping how research is conducted in a certain area or field; clarifying concepts in the literature; identifying key factors or issues related to a concept; analysing and identifying knowledge gaps; and examining how research is conducted in a particular field of study (Khalil et al, 2021). To confirm that no other work has been conducted to map the extant body of literature on LTC for older people in Southern Africa, a preliminary search for existing scoping reviews or protocols, as well as systematic reviews or protocols, on the topic was conducted using the International Prospective Register of Systematic Reviews (PROSPERO), JBI Evidence Synthesis, the Cochrane Database of Systematic Reviews, Cumulated Index to Nursing and Allied Health Literature (CINAHL), PubMed, SocINDEX, Africa-Wide Information, Evidence for Policy and Practice Information (EPPI) and Google Scholar. Two synthesis articles on research in the region have been published recently (Awuviry-Newton et al, 2021; Adonteng-Kissi et al, 2022), but they are limited in their scope and focus, and do not include studies from contexts outside of South Africa and Botswana.
Our scoping review framework is based on the Preferred Reporting Items for Systematic Reviews and Meta-analyses guidelines extension for scoping reviews (PRISMA-ScR). It also employs the five-stage process laid out by Arksey and O’Malley (2005): (1) identifying the research question; (2) identifying relevant studies; (3) study selection; (4) charting the data; and (5) collating, summarising and reporting the results. These stages and the relevant reporting items are described in the following.
Protocol and registration
A scoping review protocol was developed for use by the research team using the scoping review outline provided in the JBI Manual for Evidence Synthesis developed by the Joanna Briggs Institute (JBI) (Aromataris and Munn, 2020). Unlike systematic reviews, scoping reviews are not eligible for the PROSPERO or JBI systematic review registers, but the protocol and emerging findings were shared within the Care of Older Persons in Southern African Network so that other researchers were aware of ongoing work.
Stage 1: Identifying the review question
Given the breadth of the study’s focus in terms of countries included and the types of care provided, this article focuses purely on the profile of research produced, rather than on summarising research findings, and is based on the following research question: how has the body of research on care for older people in Southern Africa evolved over the past two decades, and what is its present profile in terms of trends in volume, geography, focus, discipline, research approaches, funding and African-led inquiry?
Stage 2: Identifying relevant studies
Eligibility criteria and information sources
Table 1 outlines the screening criteria used to identify articles for use in the review.
Screening criteria
| Phenomenon of interest | Provision of LTC to older persons with, or at risk of, a significant ongoing loss of capacity |
|---|---|
| Sample | Older persons (age 60+), care providers, families of older persons |
| Context/setting | • Care settings: LTC facilities for older persons, community-care settings, households where a need for home-based care exists
• Geographic location: countries in Southern Africa (AU definition): Angola, Botswana, Eswatini, Lesotho, Malawi, Mozambique, Namibia, South Africa, Zambia, Zimbabwe |
| Types of evidence sources | • Peer-reviewed literature
o Qualitative, quantitative and mixed-methods primary studies; systematic reviews; meta-analyses o Years included: 2000–21 o Languages: English and Portuguese • Grey literature o Dissertations, theses and published reports o Years included: 2020–21 o Languages: English and Portuguese |
A decision was made to include grey literature because we expected that a lot of the literature would have been produced by students or via commissioned or NGO reports. We also included commissioned reports published by institutions or governments that are likely to have undergone some sort of review process before publication. We acknowledge that we may not have captured all reports, despite a thorough search and consultation with our network. We did not include conference papers or any other unpublished materials that are unlikely to have been subjected to any meaningful review process.
Information sources
The following databases were searched for published literature, as well as theses and dissertations. A variety of databases were used that combined searches with large databases with smaller databases that focused on the region: EBSCO Host (Medline, CINAHL, SocINDEX with Full-Text, Africa-Wide Information, Humanities International Complete and Abstracts in Social Gerontology); African Research on Ageing Network (AFRAN) database; UN Directory of Research on Ageing in Africa 2004–15; Oxford, University of Cape Town and North-West University online library databases; Web of Science; ProQuest; JSTOR; Sabinet; Scopus; and SciELO.
The bibliographic database EndNote X9 was used to store, manage and de-duplicate the large number of records. The use of multiple databases resulted in a very high numbers of duplicates, but this was resolved via the duplicates filter function in EndNote, as well as via manual checking in cases where there were minor differences in names of titles that were not picked up by the filter function. Websites of key organisations working in the field of ageing were used to search for published reports. Reference lists of suitable articles, books, dissertations or theses were scanned for studies to be included and were added as the study progressed and we came across new publications. We shared the list of included articles with others in the field, who sent through some additional articles for inclusion.
Search strategy
Table 2 lists the search terms used with the Boolean operators ‘OR’ or ‘AND’.
Search terms
| Location of care | ‘Long-term care’, ‘Family care’, ‘Formal care’, ‘Informal care’, ‘Nursing care’, ‘Residential care’, ‘Social care’, ‘Community care’, ‘Institutional care’, ‘Social support’, ‘Elder care’, ‘Home care’, ‘Old age home’, ‘Nursing home’, ‘Care home’ |
| OR Activity/phenomenon of interest | ‘Caring’, ‘Burden of care’, ‘Care provision’ |
| AND Population of interest | ‘Older adult’, ‘Older adults’, ‘Older people’, ‘Older person’, ‘Elder*’, ‘Seniors’, ‘Senior citizens’, ‘Old age’, ‘Caregiver’ |
| AND Region/country of focus | ‘Southern Africa’, ‘Angola’, ‘Botswana’, ‘Lesotho’, ‘Malawi’, ‘Mozambique’, ‘Namibia’, ‘South Africa’, ‘Swaziland’, ‘Eswatini’, ‘Zambia’, ‘Zimbabwe’ |
Stage 3: Study selection – selection of sources of evidence
Two researchers carried out the screening of articles based on the criteria outlined earlier, and conflicts were resolved via discussion between the two researchers, as we did not have a third party for arbitration. Both authors reviewed all titles, abstracts and full texts using Rayyan, an open-source systematic review management software programme similar to Cochrane’s COVIDENCE platform. Rayyan enables collaboration within research teams and simplifies the review process by facilitating simultaneous blind review of all texts by reviewers who must categorise each text as include, exclude or maybe. When all reviewers have completed the review, the programme highlights any disagreements between reviewers or indecision on the part of reviewers so that these can be resolved, and a decision is made on whether to include or exclude a text. Prior to full execution of the strategy, the research team piloted the source-selection process on 25 random texts using the inclusion criteria and then met to discuss discrepancies and align their individual review processes. The team also met on two other occasions to discuss discrepancies and make modifications to the inclusion criteria and process.
The PRISMA flow diagram (see Figure 1) shows the process of selecting studies for inclusion. The review initially focused on sub-Saharan Africa, and the initial large number of results found was based on the inclusion of countries outside of Southern Africa. The use of the word ‘care’ resulted in the inclusion of a very large number of irrelevant studies related to the health status and medical care of older adults, but it was difficult not to search for care or to exclude ‘health’ from searches without excluding potentially useful articles. This resulted in a long and rather arduous process of manually removing irrelevant studies during the title review and again in the abstract review.
PRISMA flow diagram
Citation: International Journal of Care and Caring 7, 2; 10.1332/239788221X16740581601153
Also excluded were: general articles on the demographic phenomenon and experiences of ageing in Africa that did not focus on care; general policy responses to ageing; and literature on care provided by older people to sick people, orphans and vulnerable children in the context of the HIV pandemic. As no time frame had initially been set for the review, a very large number of articles remained, so a second round of refinement took place, limiting the time frame to 2000–21 and limiting the focus of the review to countries in Southern Africa and reviews focused on sub-Saharan Africa that were applicable, eventually leaving 78 sources focused on both informal care provided by families or friends, and formal care provision in facilities or in community or home settings by service providers.
A wide range of sources were included in the review, which employed both qualitative and quantitative methods. We decided to include conceptual studies and those that synthesised existing research, rather than only focusing on original empirical research, because they provide an indication of trends and topics in the field, making a note of this in our summary of the literature. We did not conduct a formal critical appraisal of sources of evidence as part of our inclusion or exclusion process, as this is not considered essential for a scoping review and the main focus of our review is to map the production of knowledge, rather than to synthesise or draw any conclusions from the data or analyses presented.
Stage 4: Charting and summarising the data
Data-charting process
The process of ‘charting’ involves extracting and synthesising information from the 78 included texts, and sorting it into key themes. The researchers each worked through half the studies, populating an excel spreadsheet and each verifying the work of the other reviewer. Data on the categories indicated in Table 3 were collected. In addition to data gathered from the texts themselves, additional data on authors’ origins, affiliations and history of work in the field of ageing were sourced from university profiles, ResearchGate, LinkedIn and targeted literature searches.
Categories used for charting data
| Author details | |
|---|---|
| Author(s) | Authors’ institution (location) |
| Author affiliation | Author country of origin/residence |
| Source of funding | |
| Publication details | |
| Title | Year of publication |
| Publication (book title/journal title/grey literature) | |
| Research details | |
| Research country of origin (where conducted) | Aims/purpose/area of intervention |
| Type of care (community, residential, family, mixed/general) | Population/sample |
| Methodology/methods | |
Critical appraisal of sources of evidence
We performed a basic appraisal of the quality of all sources, not for the purpose of inclusion, but rather as part of our mapping of the production of knowledge in the region. Relevant Critical Appraisal Skills Programme (CASP) and JBI critical quality appraisal checklists were used to inform our categorisation of quality, broadly focusing on the validity of results, rigour of the research process and usefulness of results in the case of empirical studies. These checklists are not intended to be used as scoring systems, but they were used to guide the review team in their evaluations of quality. In the case of reviews, the Scale for Assessment of Narrative Review Articles was used, and we were informed by the views of other authors on what constitutes a good review or conceptual piece (Short, 2009; Gilson and Goldberg, 2015).The extent to which the source was peer reviewed and published in a reputable or highly ranked journal was also considered in the assessment.
We categorised the sources as follows in terms of quality: low, low-to-medium, medium-to-high, high, high-to-very high and very high. The two reviewers discussed their decisions to review their approach, but given the wide range of sources, this was a difficult process; we acknowledge that it was highly impressionistic and open to bias. In our results, we only cautiously highlight what proportion of the sources could be considered meaningful or less valuable contributions to the literature.
Stage 5: Collating, summarising and reporting the results – synthesis of results
After the charting process, we carried out a basic descriptive analysis of the Excel database of extracted data, classifying research based on: (1) the type of care studied (informal family care and community-based care; formal community-based care services; formal residential care services; and the general care mix); (2) the countries and settings where research is taking place; (3) who is producing the research and who is funding it; and (4) the research methods used. This database is available in the supplementary material (see https://figshare.com/articles/dataset/List_of_articles_used_in_scoping_review_of_literature_on_care_for_older_persons_in_Southern_Africa_xlsx/22182307). While we have not conducted a systemic review of findings, we also identified the broad themes, discourses and constructs employed in the literature as they relate to understanding the ethics of care and the conversations that research outputs are contributing to in the region.
Results: descriptive summary of the literature
Our findings show that there was a significant increase in the number of publications focused on the care of older people in the Southern African region between 2010 and 2021 compared to the previous decade (2000–10), indicating a growing interest in the area and reflective of the increased attention being paid to the area as the issue of population ageing in the region is recognised as a significant policy concern (see Figure 2).
Number of publications in Southern Africa, 2000–21
Citation: International Journal of Care and Caring 7, 2; 10.1332/239788221X16740581601153
Growing interest in ageing and care for older people in the region reflects a broader trend in sub-Saharan Africa, which could be clearly observed from our initial screening of articles prior to limiting the study exclusively to Southern Africa. This brief review of the literature also showed that most of the literature on older people in sub-Saharan Africa is emerging from South Africa, Ghana, Nigeria, Kenya, Tanzania and Ethiopia.
Our more refined results, focused on the Southern African sub-region, clearly show that by far the most studies on caring for older people in the sub-region have been carried out in South Africa (37) by South African-based researchers. There has been little to no research focused on LTC issues for older people in other countries since 2000. This is not to say that other work on ageing has not taken place, for instance, in Malawi, reports and publications have emerged from the MISA (Government of Malawi and UNDESA, 2018) and Longitudinal Study of Families and Health. These provide a more general description of the population of older persons that highlights the need for care but do not focus on care provision specifically. Other work has taken place in Angola and Mozambique that is focused on healthy ageing and social protection, but that did not meet the criteria for inclusion in terms of a focus on LTC. There is some grey literature on Mozambique, mainly produced by HelpAge International, which has a local office in the country, but again this focuses on social protection and health services, not care issues.
Most of the research was carried out by scholars either permanently based in, or originating from, Southern Africa. However, seven of the studies involved collaboration with international researchers, and 15 did not have an African scholar among the co-authors (see Table 4).
Country of focus and type of publication
| Country of focus | Peer-reviewed journal article/chapters in edited volumes | PhD thesis | Other grey literature |
|---|---|---|---|
| Botswana | 3 | 1 | 0 |
| Eswatini | 1 | 0 | 0 |
| Malawi | 1 | 0 | 0 |
| Namibia | 5 | 0 | 0 |
| South Africa | 38 | 0 | 8 |
| Zambia | 2 | 0 | 0 |
| Zimbabwe | 4 | 1 | 0 |
| Lesotho and Zimbabwe | 1 | 0 | 0 |
| South Africa and Norway | 1 | 0 | 0 |
| Ghana, India, Mexico, Russia and South Africa | 1 | 0 | 0 |
| Regional | 9 | 0 | 2 |
| TOTAL: 78 | 66 | 2 | 10 |
Note: In cases where publications were produced from a PhD thesis, the PhD thesis has not been included to avoid double counting.
A total of 42 of the included sources (54 per cent) were unfunded studies or did not acknowledge any source of funding in the publication, indicating that it was not part of a specifically funded project. Of published articles or book chapters, at least 12 were developed from master’s or PhD thesis research, and (with two exceptions) none of the researchers appear to focus on matters related to older persons, suggesting a lack of funding for the topic. Only 11 researchers from Southern Africa appear to have sustained ongoing research in the field, and in two cases, PhD students appeared not to have entered academia or to have published their PhD research. Funding for the ten internationally funded projects came mainly from the US, Norway, Sweden and the UK, with regional funding for 14 projects coming primarily from university research funds or grants for small-scale projects, plus three government-funded projects in South Africa. Three of the South African studies included are from the SAGE–INDEPTH collaboration, a large study collecting longitudinal data in the Agincourt district. There have been over 30 other studies emerging from the SAGE and INDEPTH work on the population aged 50+ in South Africa, but these focus mainly on health and functional issues, rather than on the provision or dynamics of care, and have therefore not been included in the present study.1
Most of the literature included was published as peer-reviewed journal articles (60), although the quality of the journals in which articles were published varied, from higher-impact international journals (26) to regional journals (33); at least five of these were obscure and appeared to have low publication standards (see Table 5). Of the sources published in books, all seven appeared in edited volumes; two were confirmed as having been subject to peer review as part of this process. Papers included from the grey literature were mostly based on PhD studies; there were also a small number of programme evaluations or commissioned studies that specifically focused on care issues. While international organisations like HelpAge International have carried out multiple funded studies on the needs and status of older people, these have mainly focused on human rights issues and needs assessments, with little explicit focus on LTC. We also found that regional publications on older people published by the UN and other development agencies tend to be quite broad and high level, focusing on sub-Saharan Africa and multiple issues related to age and ageing, making them less useful for the purpose of understanding the specific issues and debates related to care in Southern Africa.
Origin of authors
| Publications by authors from Southern Africa only | 54 (40 exclusively from Southern Africa) |
|---|---|
| Publications by authors from Africa but not Southern Africa | 5 |
| Collaborations including both Southern Africa and international scholars | 5 |
| Publications by scholars from international authors that do not include African co-authors | 14 |
The sources included are representative of a wide range of disciplines, and many are interdisciplinary in nature. A total of 24 studies are published by authors working in disciplines in the health field, split evenly between nursing, occupational therapy and rehabilitation science, and public health. We determined the authors’ discipline through the departmental affiliations of listed authors. The majority of publications (53) are by authors in the social sciences. Within the social sciences, most of the work produced has been affiliated with academic departments or institutes in the following fields: psychology (ten), gerontology (seven), sociology (six), social work (seven) and population studies/geography (five).
While the broader literature on ageing and older people in the African region is dominated by health-focused quantitative studies, the literature specifically focused on care provision in Southern Africa is largely comprised of small-scale qualitative studies; 34 of these studies used qualitative methods, such as interviews, focus groups or ethnographic methods. These studies were of mixed quality, with around half (17) rated as good or excellent and eight categorised as low-to-average; the remaining 26 per cent fell somewhere between average and good quality on our rudimentary rating scale. Only 15 of the 78 texts were classified as quantitative studies. Of these, a third (five) had very small sample sizes, and only one publication (emanating from the SAGE study) could be considered nationally representative; this study (plus two other studies that were statistically representative of the older population in one district) used longitudinal data. Ten of the studies included a mix of quantitative and qualitative methods, all with very small, non-representative sample sizes and using non-probability sampling methods. There were no intervention studies that could provide guidance regarding the best practices applicable to the region that policymakers could adapt and use to improve the quality of care.
Around 23 per cent (18) of the sources included were classified as literature and/or policy reviews; these do not include any original empirical research, but either synthesised or reviewed the literature or existing policies (or would be considered ‘conceptual’ pieces). While 11 of these were considered to offer a valuable contribution to debates on care within the region, seven would be considered descriptive and summaries of existing literature or information. One report was based on information gathered through an investigative public hearing (South African Human Rights Commission, 2015) and did not fit the categories used; this was included, however, as it is widely cited as a source of evidence in the South African literature.
In terms of the area of focus, most of the literature (33 texts) since 2000 is concentrated on family-based care provision (see Table 6). This is to be expected given that the vast majority of care given to older people in the region is provided by family in home settings. In South Africa, there appears to be increased interest in informal care in the South African post-apartheid context. This presents a change from the apartheid period, when most of the literature was focused on residential care facilities and community services catering to the needs of older white adults. There has not, however, been a corresponding focus on formal community-based services to support older people and their families, with only four texts focusing on the topic in South Africa. There is also no focus on community care in the literature on contexts outside of South Africa, which is unsurprising given the lack of formal services in this area; however, it would be useful in demonstrating gaps or identifying valuable community-driven initiatives that could be better supported by governments. In Namibia, Ananias et al (2015; 2016) have published two studies based on social work interventions to support family carers, while Leuning et al (2000), over 20 years ago, studied the cultural dynamics of home-based nursing care for older people.
Country of focus and type of care
| Country | Literature focused on formal residential care | Literature focused on family and other providers of informal care | Literature focused on formal community services | Literature focused on the care mix or care system more broadly |
|---|---|---|---|---|
| Botswana | 0 | 3 | 0 | 1 |
| Eswatini | 1 | 0 | 0 | 0 |
| Malawi | 0 | 1 | 0 | 0 |
| Namibia | 2 | 0 | 3 | 0 |
| South Africa | 12 | 22 | 3 | 9 |
| Zambia | 2 | 0 | 0 | 0 |
| Zimbabwe | 4 | 1 | 0 | 0 |
| Lesotho and Zimbabwe | 0 | 0 | 0 | 1 |
| South Africa and Norway | 1 | 0 | 0 | 0 |
| Ghana, India, Mexico, Russia and South Africa | 0 | 1 | 0 | 0 |
| Regional | 0 | 5 | 0 | 6 |
| TOTAL | 22 | 33 | 6 | 17 |
Whether focused on informal or formal care, family responsibility is a central theme across the discussions in the care literature in the region. The lack of formal LTC and policy is explained as a function of the assumed familial responsibility for care, undergirded by African norms and values around respect for elders and notions of reciprocity. While some articles reflect critically on these assumptions, many operate from the underlying assumption that families should be providing care.
Topics of focus and discussions around family care are centred around two main issues: (1) recognition of growing care deficits in the context of population ageing and changing socio-economic dynamics (11 sources); and (2) experiences of care provision (16 sources). The former set of texts speak to the ethical elements of ‘attentiveness’ and ‘responsibility’ in Tronto’s model, and raise issues related to the erosion of family willingness and capacity to provide care in the context of socio-economic challenges, modernisation and urbanisation, and changing cultural norms, and the need for formal support for household care or the provision of care outside the household (which tends to be presented as the least desirable option). They do not, however, provide empirical evidence on the care needs of older people or the needs of carers. Only Awuviry-Newton et al (2021) explore the adequacy of care in terms of meeting instrumental activities of daily living (IADL) and activities of daily living (ADL) needs, and the literature they draw on in this meta-synthesis only includes two studies from Southern Africa. The latter set of 16 texts focus on the caregiving experiences of informal carers (16 texts), concentrate mainly on care for people with dementia and Alzheimer’s (12 of 16 articles), and are based on South African data. These focus mainly on the realities of carers’ experiences and the pressures they face, and less on their competence to provide care or the quality of care provided. Outside of South Africa, only one study (from Namibia) focused on informal carers’ experiences.
The main focus of study in formal care settings is on issues related to care competence: quality of care and perceptions of care in formal caregiving settings. With the exception of three articles that explicitly discuss the ‘un-Africanness’ of institutional care, the 16 articles addressing these issues focus on the practicalities of care and are largely published in nursing and occupational and physical therapy journals. There is little focus on the experiences of care workers in these settings, with only one South African and one Zambian study investigating this topic. This is an important gap because, as Mapira et al (2019) point out in the South African case, care workers are often poorly trained and badly paid, and can face significant challenges in carrying out their work, which, in turn, affects care quality in LTC facilities.
There are also some texts that focus more broadly on care systems and policies (12), considering their histories, organisational structures and underlying norms and values, and the value attributed to care work. These focus explicitly on issues related to the political ethics of care and reflect on existing gender and traditional roles and discourses, as well as on governments’ inattentiveness and failure to take responsibility for older people. One of the articles by Bozalek and Hooyman (2012) directly employs the political ethics of care and a feminist gerontology as normative frameworks, arguing for redefining care for older persons as a societal responsibility requiring adequate resources, rather than the responsibility of a particular group of people (namely, women) or something that should only take place in the private sphere.
Discussion
The results of this scoping review provide insights into research on LTC in Southern Africa in terms of the focus of recent studies and who is conducting and funding research in the area. The introductions of almost all publications included in the scoping review argue that there is a lack of evidence on the LTC of older people in the Southern African region. Our findings indeed show that there is no clear and well-funded research agenda driving research on LTC for older people in Southern Africa. This is particularly notable in countries outside of South Africa where little to no good-quality empirical research on the topic has been published. This is not to say that older people are not the subjects of increasing focus and study, particularly in the areas of health and social protection; however, as the literature included in this review has shown, the actual structures and practices of care are not an area that has attracted significant research attention or funding.
The lack of adequate empirical evidence to demonstrate the need and political will to invest in care systems stymies progress in policy development. This lack of interest or prioritisation of the area by governments and many funders also speaks to a lack of attentiveness around LTC and reduces the likelihood of research funding. This is visible in terms of who is producing research – most of the publications produced outside South Africa are from student researchers who produced zero to two papers from their theses before moving on to other topics or leaving academia altogether, indicating a lack of funding and capacity building for emerging researchers in the area. South African research institutions have significantly more capacity than others in the region and a more developed LTC system, and this is clearly reflected in the amount and quality of published research emerging from the country relative to others. External funding, regional collaborations and mentorship programmes that strengthen grant writing and research capacity are of great importance in attracting and retaining researchers to the field, and increasing the amount and quality of research on LTC. Reflecting on the politics of care, this demonstrates limited attentiveness and sense of responsibility towards the care of older adults.
Where there is limited evidence of the realities of care provision and receipt, it can be hard for policymakers to recognise or address the need for care, or to understand issues around competence (or lack thereof) and how to support this. While this article has not focused on the findings of the sources included in our review, our reading of sources shows that there are many arguments and assumptions – particularly about family care – that are made but not supported by adequate or robust data. Responsibility for care, in particular, the family’s responsibility, is highlighted extensively in the literature reviewed, but the dynamics and actual capacity of family to provide care are overlooked. Of the studies focused on family care or describing the landscape of care in countries or the region more broadly, very few presented concrete evidence to support or interrogate assumptions about: norms and values; the adequacy of care for older people by families; decision-making around care; and the need and demand for alternate forms of care. Overall, there is a lack of thematic focus on what Tronto would call care competence, the responsiveness of care and the relational and structural drivers of this work in existing empirical work. Similar observations have been made by Aboderin and Hoffman (2015).
A failure to focus on competence and the practicalities of care in many countries ignores the needs of both providers and receivers of family care, and likely contributes to and fuels policy and public discourse on family failure, the breakdown of traditional values, abuse and neglect. While the latter two issues are, of course, valid concerns, focusing exclusively on more extreme forms of ‘lack of care’ makes it easier to blame families and loses sight of the structural underpinnings of abuse and neglect, as well as more widespread forms of inadequate care provision in a context of high poverty and poor service provision by governments.
The low number of studies focused on community-based services reveals another important gap, both in the academic literature and (most likely) in service provision. Research is also needed on informal carers’ experiences and support needs, particularly in countries outside South Africa, where almost no research has been conducted, but where care is almost exclusively provided by informal carers. Also largely absent across all countries in the region are data on the experiences and needs of the care workers who provide care and shape the quality of care provided in residential care facilities.
The neglect in funding for research, interventions and the development of scholars interested in gerontology identified in this review indicates that care for older persons in the region has been ignored and is not considered a political concern. To some extent, this is a function of the small proportion of populations aged over 60 in the region and even smaller fraction aged over 70 (around 1 per cent in some countries), which – in the context of fiscal constraints – results in limited drive or will to invest in older people in the context of the many other pressing concerns related to larger younger populations. South Africa has a significantly larger number of people aged 60+ in its population (around 5.6 million, or 9.2 per cent) relative to other countries in the region with more youthful and/or smaller populations, which partially explains the disproportionate amount of research emerging from this country relative to others. Budgetary constraints are also a consideration in terms of policy interest in older populations, as most countries in the region are categorised as low-income (Malawi and Mozambique) or lower-middle-income (Angola, Eswatini, Lesotho and Zimbabwe) countries. It is important to note, however, that elsewhere in sub-Saharan Africa, there exists a much more substantial literature on older people, emerging from such countries as Ghana, Ethiopia, Uganda and Kenya, which also have youthful populations and face similar fiscal constraints. These countries do, however, have larger populations overall and may have more research capacity than some smaller countries in Southern Africa.
Over the first 10–15 years of the period under review (2000–21), health systems, funders and researchers in Southern Africa were focused on HIV/AIDS and its health, social and economic impacts, which is unsurprising given that Southern Africa has the highest HIV/AIDS prevalence rates in the world. Over this period, much literature on care and intergenerational relationships in the region focused on older persons as providers of care to younger populations (none of which is included in this review).
As attention has shifted away from HIV/AIDS to such areas as non-communicable disease, and with rapid population ageing being acknowledged as a concern, interest in care for older persons appears to be increasing, as seen in the growing number of publications in the area. This work seems to be driven by external development agendas and focused on the achievement of the UN SDGs; thus far, it has been focused mainly on the healthy ageing agenda (targeted at reducing the future care ‘burden’) and social protection.
Conclusion
Evidence provided in this scoping review shows that there is a significant lack of empirical evidence on care for older adults in Southern Africa. We argue that the lack of funded research highlights the invisibility of care from political and social perspectives. A lack of evidence limits opportunities to make care issues more visible to the state and other actors through advocacy, or to make the case for care interventions in the region. It also constrains evidence-based policy, programme development and budget allocation for implementation. The lack of funding or allocation of resources also suggests that governments are not only shying away from their responsibilities in terms of service provision or supporting family-based care, but also not attentive to those involved in caring, who are mainly women.
The findings reported in this article reveal and challenge the position of care in the political realm. We argue that tackling the structural invisibility of the care of older persons in the region requires a fundamental repositioning of the care of older persons and reframing of government norms (Koggel, 2012). Research enquiry has an important political role to play in reframing care and the value societies place upon it; a political ethics of care should drive the development of a research agenda in the region. Doing this also requires researchers to interrogate existing ideals of care and to reframe the conversations about care in the region. We need to focus on understanding needs, desires and experiences, so that older persons and their caregivers can be heard in locally appropriate ways. There is also a need to document the experiences of women who are providing care to understand and support their needs.
Note
The SAGE is a longitudinal study collecting data on adults aged 50 years and older from nationally representative samples in China, Ghana, India, Mexico, the Russian Federation and South Africa. The SAGE–INDEPTH collaboration uses a shortened version of the SAGE questionnaire in eight health and demographic surveillance system field sites from the INDEPTH network, four of which are in Africa (South Africa (Agincourt), United Republic of Tanzania (Ifakara), Kenya (Nairobi) and Ghana (Navrongo).
Funding
This work was supported by a Global Challenges Research Fund grant, ‘Care of Older People in Southern Africa: A Network to Improve Understanding of Challenges to Elderly Care in Southern Africa’ (Grant Number GCRFNGR6/1038).
Acknowledgements
Thank you to the members of the COPSAN, some of whom provided detailed reviews of the article, while others provided valuable feedback during workshops.
Conflict of interest
The authors declare that there is no conflict of interest.
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