Despite the higher prevalence rate of intellectual disability (ID) in low- and middle-income countries (LMIC) compared with high-income countries (Maulik et al. 2011), there has been limited research in LMIC and in Africa specifically (Adnams 2010; Mckenzie, McConkey & Adnams 2013). A number of studies have reported that parents and caregivers of children with ID report negative experiences compared with those raising children without ID (Bristol, Gallagher & Schopler 1988; Dyson 1997; Hayes & Watson 2013; Lloyd & Hastings 2009; Olsson & Hwang 2001). Some studies reported that parents of children with ID may experience anxiety, post-traumatic stress disorder (PTSD) and even depression when told about the diagnosis of their children. Other studies have demonstrated that parents may experience high levels of stress during the caring process, especially when a child presents with a challenging behaviour (Hassall, Rose & McDonald 2005). This situation is exacerbated for parents and caregivers living in low-income countries, with parents reporting more severe levels of stress, severe sadness, family difficulties, financial difficulties, stigma, shame and discrimination (Azar & Badr 2010; McKenzie & McConkey 2016; Sen & Yurtsever 2007; Tilahun et al. 2016). Some studies have demonstrated the role played by culture and religious beliefs in shaping caregiver and parental experiences in caring for a child with ID. Whilst significant contributions and strides have been made in the literature on caregivers’ and parents’ experiences in various contexts, little is known about the experiences of black African caregivers and parents of children with ID in Africa, where specialised services for people with intellectual disability (PWID) and their families are limited or non-existent. A scoping review on services for children with disabilities in LMIC (Magnusson, Sweeney & Landry 2019) indicates the paucity of services and consequent impact on families. It is clear that access to rehabilitation services in Africa is a challenge (Morris et al. 2019).

For African caregivers and parents, experiences and outcomes of raising or caring for PWID are expected to be worse, in part because of the legacies of colonialism (and in some countries, apartheid), poverty and poor living conditions in Africa. In addition to other challenges, these families have been reported to have high rates of single parenthood, child-headed households, fatherlessness, alcohol abuse and domestic violence (Scior et al. 2015). In Southern Africa and other parts of the continent, the effects of migrant labour, where men have to leave their wives and children to seek employment, usually in the cities, have also significantly affected black African families. The displacement of family members during political struggles in a number of countries might have also contributed to the current functioning and structure of the African family system (Siwella 2011).

Most work in the field of ID in Africa has been conducted in South Africa. However, important publications from the continent at large do exist. Gona et al. (2015) write about the perceptions of professionals and parents on the causes and treatment options for autism in Kenya. The authors conducted a qualitative study in a multicultural context and found that, regardless of culture, participants held similar perceptions regarding the causes of, and treatment options for, autism. Similar to that what has been found in other contexts (McKenzie & McConkey 2016), in Kenya, caregiver perceptions about the causes of autism ranged from supernatural beliefs, such as evil spirits, witchcraft and curses, to biomedical causes related to infections, drug abuse, birth complications, malnutrition and hereditary conditions (Gona et al. 2015). Perceptions regarding treatment options encompassed both biomedical and traditional and spiritual methods of healing (Gona et al. 2015). Indeed, across the continent, it has been reported that it is common in African cultures to use both Western and traditional healing systems (Kromberg et al. 2008).

Whilst it has been suggested that, in different cultural contexts, negative reactions may be moderated by cultural support systems or may be exacerbated by cultural beliefs and taboos (Empson 2015; Serpell, Mariga & Harvey 1993), the evidence, either in favour of or against this view in urban settings, is sparse in urban African settings (Empson 2015). One country where African cultural beliefs were found to be associated with negative reactions in some instances, but promoted the social inclusion of people with disabilities in others, is Swaziland (Ndlovu 2016). A global review on stigma and awareness raising by Scior et al. (2015) reported that in LMIC, including countries in Africa, children and adults with ID continue to experience high levels of stigma and are denied many rights and freedoms enjoyed by people without ID. Scior et al. (2015) observed the invisibility of PWID:

These studies indicate that cultural beliefs, as well as religious belief systems, may offer important contributions to our understanding of how people with ID are perceived in Africa.

When considering the South African context (the African country with the highest research output), specifically with regard to the question of disability, it becomes clear that, despite the fact that South Africa is an upper middle-income country, serious challenges resulting from lack of resources and inherent socio-economic inequalities continue to prevail in black African communities (Makiwane 2010). In addition, the majority of black Africans remain trapped in extreme poverty, with many still lacking access to basic resources and infrastructure (Pillay 2008). Furthermore, broader studies on mental health on the continent suggest that mental health services for children are extremely limited in some African countries (Yoder et al. 2016). These challenges further complicate and frustrate parental efforts to provide care and support for their child with ID (Ataguba, Akazili & McIntyre 2011). As such, raising a child in a black African family that experiences an overwhelming psychological reaction associated with discovering that the child has ID, in a context of widespread poverty and deprivation, may be complex (Mbazima 2016). Some studies on African families have reported strong traditional belief systems and it is important to understand how these beliefs are shaped or challenged by the birth of a child with ID. It is also important to understand how African families cope with the reported stigma associated with the birth of a child with ID (UNICEF 2012).

In light of the above discussion, it is imperative that we understand how the birth of a child with ID affects the family system in a complex low-income African context. In order to address this need, we conducted a narrative synthesis of qualitative studies on the subjective experiences of caregivers and parents of children with ID regarding their caregiving experiences in order to identify gaps in the literature regarding caregiver or parent and family experiences in Africa. We chose to focus on qualitative research owing to the paucity of information and the lack of validated quantitative instruments in the African context (Christianson et al. 2002). Qualitative research is likely to provide detailed in-depth descriptions on which further work can be based. Our primary aim in this article is to review what is known about the experience of being a family caregiver for a child with ID in Africa. We believe that the imbalance of knowledge between wealthier and less wealthy countries regarding disability and specifically caring for a child with disabilityrequires more careful and thoughtful consideration, especially given the fact that disability is more prevalent in low-income contexts (Swartz 2014; Swartz & Marchetti-Mercer 2018).

To our knowledge, there is no review that has attempted to examine the experiences of caregivers and parents of children with ID in Africa. A review from Africa examined human rights of individuals with intellectual disabilities in South Africa. Although in their review (Swartz & Marchetti-Mercer 2018), they make a distinction between a social and a medical model of disability, the review does not apply a socio-ecological approach. In the current review, we examine the experiences of caregivers and parents of children with ID in Africa using the socio-ecological model (Bronfenbrenner 1992) in order to identify potential targets for change in the provision of ID services in Africa across various systems.

Evidence suggests that most caregivers and parents of children with ID report a number of negative experiences across all levels of care. Bronfenbrenner’s socio-ecological model is helpful in exploring experiences of various sectors of care and support (Bronfenbrenner 1992). In line with this framework, caregivers and parents may have both positive and negative experiences of caring for a child with ID through their day-to-day interactions with different levels of healthcare and other systems.

Bronfenbrenner (1992) describes the social context as characterised by five dynamic interdependent and interrelated systems. These are the micro-, meso-, exo-, macro- and chrono-systems. Our key interest in this review is on the micro-system at the family or household level, but as Bronfenbrenner (1992) observed individuals have continuous interactions across different levels of the social context. Individuals might be influenced by, or might have influence through their continuous interaction with various systems. In order to develop a nuanced understanding of the caregivers’ and parents’ experiences, it is important to gain a deeper insight into the types of individuals’ lived experiences, the level of the social context at which experiences occurred and the consequent impact.

Bronfenbrenner’s (1992) framework takes due account of both material and cultural factors and facilitates an understanding of caregivers’ experiences of ID and its management at various levels and within different healthcare systems (Swartz 1998). Although our own approach to the field is influenced by a contextual understanding of local explanatory models and practices (Mkabile & Swartz 2020), we did not select articles based on any specific theoretical orientation. Indeed, we show here that there is a paucity of research on our topic of interest; an aspect of our motivation for undertaking the review is to demonstrate the scant state of current knowledge in the area and to encourage further research.

The results demonstrate both positive and negative experiences of those caring for PWID in Africa across all levels of the social system. The studies reveal the poignant reality of the daily struggles faced by PWID and their families.

In terms of Bronfenbrenner’s ecological framework, it is clear that caregivers and parents’ experiences are generally negative across a number of levels, from the micro-level of the family, through community and religious levels, to issues of care provision in African economies, all within the framework of global inequality. Themes associated with the micro-level included worries about the future and the burden of care having negatively affected their life experiences. Most participants across all nine studies expressed concerns about the future of their children with ID in the event that they should pass away. Others complained about not being supported by their extended family members, thus increasing the burden of care. Studies investigating parenting in the context of a family member with ID have reported similar findings where caregivers and parents of children with ID had to rely on their internal attributes, such as resilience, to cope rather than relying on others (Breitkreuz 2014).

In addition, at the micro-level, caregivers and parents struggled with mental health difficulties, including anxiety and stress, again in common with studies elsewhere. Perhaps more in the African context than elsewhere, given lack of access to resources and lack of custodial care, caregivers’ anxieties seem to be rooted in their perceived treatment by society, especially as this relates to society’s beliefs regarding the causes of ID. Lack of residential and day-care facilities result in PWID being cared for at home and in the community, thus unable to hide away from stigma, whereas some families, as in wealthier contexts, hide their family members with ID from the public eye (Aldersey et al. 2014; Haley & Perkins 2004; MacDonald & Hastings 2010).

Themes identified within the meso-system associated with services for PWID reveal the plight of caregivers and families of PWID in relation to accessing specialised services for their loved ones, as well as supportive services for themselves. The majority of studies reviewed have reported on the underdevelopment of ID and mental health services in Africa in general.

It is also clear from the articles we reviewed that the macro-system has a significant influence on caregivers’ and parents’ experiences of raising a child with ID. Most of the studies we reviewed reported on cultural or spiritual beliefs and the local resource context. There is a risk that beliefs that are viewed as superstitions are overemphasised in the literature, with more practical concerns being given less attention. In this regard, it is interesting that most recent of the articles reviewed (Lamptey 2019) open with a discussion of superstition and reliance on religious interventions, but the primary focus of the article is on the lack of access to resources, including healthcare resources. If people have not had access to all that biomedicine has to offer, then it is not surprising that their beliefs centre on explanations from other paradigms. In other words, what is presented as a difference in world view or belief system may in part be attributable to a difference in terms of access to resources.

In this regard, it is interesting that in the studies cited, there was a general understanding that the causation of ID was both supernatural and biomedical. It is clear that beliefs regarding the causes of ID, such as punishment from God, bewitchment, witchcraft and demon possession, do occur and need to be taken seriously; however, these are not the only views held in Africa.

These findings are consonant with those from previous studies from various parts of the world, showing, in multiple contexts, that there are a range of explanations for the causes of ID (Aldersey et al. 2014; Scior & Furnham 2011; Scior et al. 2015; Treloar 2002). Participants in the studies we reviewed used both western and indigenous health systems, but this is not a feature of African parents in particular – throughout the world, people seek to understand ID in a range of ways and may make use of a range of help, including services based on spiritual beliefs quite at odds with biomedical services (Sango & Forrester-Jones 2017).

Perhaps what is most striking, then, in our review, is not that parents relied on many systems of belief and help (this is in fact universal), but that the issues that parents and caregivers face are so similar to those reported in the literature in other parts of the world. The studies we reviewed showed evidence, which is common in the literature, of issues of shattered expectations, difficulties in adjustment and search for meaning in the context of the diagnosis of ID. What was strikingly different from the rest of the literature is the impoverished context of these parents and lack of access to the kinds of resources sometimes taken for granted elsewhere. Religion and spiritual beliefs are relied on heavily in this context, not necessarily because these are inherently more important here, but possibly because there is in reality little else on which people can rely.

An important implication of our study is that for the field of ID research to move forward globally, it is important to pay close attention to contextual and social factors. The experiences of caregivers in Africa are profoundly influenced by context and especially by lack of resources. For ID research to move forward, it is important to understand that the challenges faced by African parents are the rule rather than the exception in the global context.

The findings of this review present a number of practical implications for service provision in the field of ID. In particular, the review highlights the need for support services for caregivers of children with ID. Support services can be in the form of counselling and practical guidance from professionalised ID services. There is also a need to understand and leverage the informal forms of support caregivers identified as crucial support systems. These include spiritual and faith healers, prayer groups and churches. Finally, this review has identified the lack of specialised health, education and social services for PWID. It is clear from our study that much research is urgently needed on this topic, paying due regard to contextual issues and cross-cutting themes. Given the paucity of research, it is difficult to make arguments for policy changes, but accessibility of services and stigma are two clear emergent policy concerns.

A limitation of the review is that it does not provide a detailed in-depth analysis of the experiences of caregivers of children with ID, as there were very few studies, conducted in vastly different settings, employing different methodologies. However, it does provide an important starting point to understanding this topic within the African context. The paucity of research on this topic is a major problem; with hindsight, conducting a grey literature search on this topic might have provided a more in-depth analysis.

A particular strength of this review is that it is the first of its kind in the African context, exploring caregivers’ experiences of raising and caring for a child with ID and thus addressing a gap in research into PWID and their caregivers. Findings of the review reveal that caregivers of children with ID in Africa face challenges regarding the lack of critically required specialised services for PWID in their countries. These services include education, health and social services. Findings indicate a need for formal and alternative healthcare sectors to work together in the understanding and management of ID in Africa. Furthermore, these findings raise important implications for research. Too few studies on ID have been conducted in the African context. Even fewer have been conducted on the particular experiences of those living with ID or caring for someone with ID. Only nine studies were suitable for inclusion in this review and even these studies did not demonstrate a uniform methodology, which is a key feature of a rigorous systematic review. Thus, a key implication for research is the need for more studies, particularly qualitative studies, to be conducted in the field of ID in different African contexts, exploring the role of culture, cultural beliefs, informal support systems and coping in the management of ID. What is also noteworthy is that despite the focus on cultural issues in the research that are on ID in Africa, there is relatively little engagement with questions related to the implications for African people of collectivist rather than individualist ideology and patterns of care. In disability studies more generally, there is increasing discussion of questions of Africanisation and decolonisation of knowledges (Mbazzi et al. 2020; Mji 2019; Owusu-Ansah & Mji 2013), but there has been less discussion of this in ID and family research. Future studies may well explore whether this is a fruitful line of research, helpful to children with ID in Africa and those who care for them.