Internationally, there is growing evidence suggesting that children and young people who assume the role of carer for ill relatives are negatively impacted. However, the evidence from low- and middle-income countries (LMICs) appear to be limited. This scoping review aimed to summarise and synthesise the available evidence on the experiences and outcomes of young carers (YCs) living in LMICs. CINAHL, MEDLINE, Scopus, PsycINFO, LILACS, AMED, and Google Scholar were searched until April 2023. Records were screened against predefined criteria and suitable articles were retrieved. Relevant information was then charted and summarised. Qualitative content analysis and a narrative synthesis was then conducted to identify overarching themes. From 776 records retrieved, 20 publications met our inclusion criteria. Most of the included studies were conducted in African countries, with the remaining studies in Malaysia, Pakistan, and Mexico. YCs included children and young people between 5 and 24 years who cared for parents, grandparents, and other elderly relatives. Six overarching themes describing the experiences and outcomes of YCs were identified. The themes described caring responsibilities, socio-cultural expectations, early employment and impact on education, social connections and mental, physical, and emotional health and wellbeing. Our findings highlight key factors that decision-makers should consider when developing policy and practice guidelines. More research is needed in underrepresented countries and understudied themes to help develop and evaluate suitable interventions and programmes.
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Introduction
The phrase ‘young carer (YC)’ has been extensively used to refer to children and young people who provide regular, unpaid, and considerable physical and emotional care to ill or disabled family members (Joseph, et al., 2019). There is growing evidence suggesting that a significant proportion of young people provide informal care to family members who are unable to care for themselves due to disabilities, mental or physical diseases, or other vulnerabilities (Leu, et al., 2018b). According to various studies conducted in high-income countries, YCs are estimated to be between 2% and 8% of the youth population (BBC, 2018; Joseph, et al., 2019). For example, in England, it is estimated that there are around 800,000 YCs, of which 376,000 are between the ages of 16 to 25 years (BBC, 2018; CarersTrust, 2016), and in Italy, around 391,000 carers are between the ages 15 to 24 years (Italian Institute of Statistics, 2019). Statistics also highlight a similar prevalence of YCs in Australia, Norway, Sweden, and the USA (Joseph, et al., 2019).
Research suggests that there are risks and protective factors associated with being a YC and the presence or absence and various combinations of these factors contribute to the mental health of YCs. Adverse effects on young informal carers include anxiety, depression, fatigue, sleeplessness, being overweight, backaches, and risky practices including illicit sex, drug abuse, and alcoholism (Grenard, et al., 2020; Haugland, et al., 2020). However, previous research also highlights that YCs sometimes feel effective and accomplished due to their distinctive caring skills and expertise (Jones, 2018). The literature suggests that YCs feel capable of providing care for both themselves and the care recipients, which boosts their resilience, adaptability, and strength. YCs are also seen as emotionally mature and better able to regulate their emotional states (Jones, 2018). In a systematic review by Lacey et al. (2022) the pooled evidence confirmed that YCs experience worse physical and mental health than their peers and further highlighted that YCs who provide intensive care experience reduced physical and emotional health.
Based on the above evidence, experts have consistently highlighted a need to develop specific support services for YCs (Lacey, et al., 2022). Some countries like the UK, Sweden, Australia, and Norway have started developing and implementing policies to help support YCs (Aldridge, 2018). In the UK, the Care Act 2014 and the Children and Families Act 2014 aim to strengthen the rights of YCs by protecting them from inappropriate or excessive caring activities and improving their transitions into adulthood (Care Act 2014 (2014); Children and Families Act 2014). Despite these efforts to support YCs internationally, some countries, especially low- and middle-income countries (LMICs) are lagging behind (Cluver et al., 2012). LMICs are defined as countries with limited access to infrastructure, healthcare, and a lower standard of living, and are usually categorised as having a low Gross National Income (GNI) (World Bank, 2023; Wellcome Trust, 2023).
Unlike developed and high-income countries, there is limited or unclear data or statistics about YCs in LMICs, especially in Africa and Asia (Leu & Becker, 2017). However, experts suggest that in African countries, the prevalence of caring may be higher because of the high number of families living with Human Immunodeficiency Virus/Acquired Immunodeficiency Syndrome (HIV/AIDS) and Malaria, which is further compounded by financial and social pressures (Elflein, 2022; Leu & Becker, 2017). In general, research shows that YCs in different countries carry out the same range of caring activities (Nagl-Cupal, et al., 2014); yet the disparities in available resources could result in different outcomes and experiences among YCs. For example, in the UK, it was reported that only 9% of adolescent carers contribute financially to their family, while over half of the YCs in LMICs are involved in income-generation activities, such as begging, farming or part-time employment (Joseph, et al., 2019). As a result of this, distress and other poor outcomes among YCs may be even more debilitating in LMICs compared to developed nations (Majeed, et al., 2018).
Emerging theories have contributed to a growing understanding around the experiences of young carers. Metzing-Blau and Schnepp (2008) describes two interlinked phenomena concerned with family cohesion and the desire to live a normal life. These aspects define a model in which children assume an active role in familial care. Other theories suggest that YCs from different countries share similar characteristics, experiences and needs, irrespective of geography (Leu, et al., 2018a). As such theoretical insights highlight the importance of communication between YCs and the immediate family members, extended family, health and other professionals including schools and peers.
Although some researchers have attempted to pool the global evidence on YCs, these reviews have limited or no representation from LMICs (Bou, 2023; Chevrier, et al., 2022; Chikhradze, et al., 2017; Fleitas Alfonzo, et al., 2022; Janes, et al., 2022; Lacey, et al., 2022; Leu & Becker, 2017; Marote, et al., 2012; Saragosa, et al., 2022). Notably, a number of promising interventions are being developed and implemented to support YCs, especially at the local level (Foley, et al., 2023; Kettell, et al., 2021; Masterson-Algar, et al., 2022). However, despite best efforts, any recommendations and conclusions drawn from those studies may not be readily translated to LMICs. To date, the limited evidence from LMICs suggests there is a need for more studies to better understand the nature, experiences, and consequences of caring among YCs. Public health professionals, policymakers, community workers and practitioners can benefit from this knowledge to ensure intervention programmes are appropriately co-designed with and for YCs in LMICs.
The overarching research question for this scoping review is, ‘What are the experiences and outcomes of YCs living in LMICs?’ The aims and objectives are to (1) explore the extent and nature of the body of literature, (2) provide a thematic summary of the available evidence, and (3) identify areas for future research.
Methods
This scoping review process was conducted following the recommendations from the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews (PRISMA- ScR, Supplementary material 1) and the guidelines from the Joanna Briggs Institute (Aromataris & Munn, 2020; Tricco, et al., 2018). The review protocol was registered on the Open Science Framework platform (Liverpool & Raji, 2023).
Search strategy and screening process
CINAHL, MEDLINE, Scopus, PsycINFO, LILACS, AMED, and Google Scholar were searched on April 13th, 2023. The search strategy included keywords related to “young carers” AND “low-and-middle-income countries” (Supplementary material 2). LMICs were selected based on internationally agreed categorisations (Wellcome Trust, 2023). Age categorisations for children and young people were based on the United Nation’s definitions for children and youth (Department of Economic and Social Affairs Youth, 2023). Therefore, for the purpose of this review, children refer to anyone below the age of 18 years, and young people refer to anyone below 24 years. The reference list of relevant articles and systematic reviews were also scanned for relevant records. Deduplication and selection were done electronically using Rayyan (Ouzzani, et al., 2016). The screening process was first piloted during team meetings with a small sample of papers (n = 5) to establish an acceptable level of inter-rater reliability (92%). Records were then independently screened by two reviewers, first by titles and abstracts and then by full-text using our predefined inclusion criteria (Table 1). Disagreements were discussed at bi-weekly team meetings. We included any study focused on children and young people up to 24 years caring for any adult or child and living in a LMIC. We excluded animal studies, review articles and letters to the editor.
Table 1
Study selection criteria
Inclusion criteria
Exclusion criteria
Studies conducted in any low or middle-income country.
Studies conducted in high-income countries even if they focused on obtaining views on young carers from LMICs.
Studies focused on children and young people up to the age 24 years caring for other humans.
Studies focused on adult carers over 24 years of age caring for other humans and studies focused on caring for animals.
Empirical studies published in English, French, Yoruba, and Tamil.
Literature reviews, editorials, and languages not within the scope of the review team or our network.
Quality appraisal
In line with established guidelines for scoping reviews, an assessment of methodological limitations or risk of bias of the evidence was not conducted (Peters, et al., 2015).
Data extraction and synthesis
For 50% of the reports (i.e., 10 articles), two of the reviewers independently extracted data on the publication type and title, date of publication, authors’ names, study type, aims, findings, country of focus, participants’ age and gender, recruitment information, sample size and information on health condition and the relationship between the care recipient and YC. The reviewers then cross-checked and verified the data from the remaining 50% of the reports after extraction was completed. A research assistant then cross-checked and verified the data from a randomly selected 20% (n = 5) of the reports. One author was contacted for further information. Discussions were held during bi-weekly team meetings to ensure consistency and consensus. The data was charted using Microsoft Excel. Qualitative content analysis (Erlingsson & Brysiewicz, 2017) and narrative synthesis (Popay, et al., 2006) were then conducted on the charted information. Since a meta-analysis was not planned (Liverpool & Raji, 2023), both qualitative and quantitative findings were analysed in a convergent synthesis design and then integrated in a narrative discussion (Hong, et al., 2017). Therefore, where possible, quantitative data were transformed into qualitative or descriptive themes. The reviewers collaborated to identify core consistencies and meanings across the reports. Overarching themes were constructed to illustrate the range of meanings from the individual reports.
Role of the funding source
This research did not receive any specific grant from funding agencies in the public, commercial, or not-for-profit sectors.
Results
776 records were retrieved from six databases and grey literature searching. After duplicates were removed, the remaining 507 records were screened against the eligibility criteria, of which 20 were eligible for inclusion in this review. Most records were excluded (Supplementary material 3) because of the population criteria (Fig. 1).
Fig. 1
PRISMA Flowchart of the study search and selection
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Description of the included reports
Table 2 provides details of the 20 reports (i.e., 18 journal articles, 1 book and 1 book chapter) published between 2000 and 2023 that were included in this review (Bauman, et al., 2006; Cluver et al. (2012); Cluver et al. (2009); De Jong, et al., 2023; Evans & Becker, 2009; Grugel, et al., 2020; Kavanaugh, et al., 2021; Lane, et al., 2015; Majeed, et al., 2018; Mokhzan, et al., 2023; Pufall, et al., 2014; Robson, & Ansell, 2000; Robson, et al., 2006; Robson, 2004; Skovdal, et al., 2009; Skovdal & Ogutu, 2009; Skovdal & Andreouli, 2011; Skovdal, 2011a, 2011b; Skovdal, et al., 2013). Most of the publications analysed quantitative and/or qualitative data from Kenya (n = 6, 30%), South Africa (n = 5, 25%), and Zimbabwe (n = 3, 15%). Sample sizes ranged from 6 to 5520 participants and included children and young people, care recipients and professionals. Generally, the studies used convenience sampling approaches adopting snowballing or purposive recruitment techniques to recruit participants through schools, health clinics and community settings. YCs ages ranged from 5 to 24 years and represented both males and females. YCs in the reviewed studies were mainly caring for parents, siblings, grandparents, and other elderly relatives. Most reports mentioned HIV/AIDS as a reason people needed care (n = 14, 70%).
Six overarching themes describing the experience and outcomes of YCs were identified (Fig. 2). These included (1) caring responsibilities, (2) socio-cultural expectations, (3) early employment, and impact on (4) education, (5) social connections and (6) mental, physical, and emotional health and wellbeing.
Fig. 2
Visual representation of the identified themes. *N(n) Number of reports contributing to each theme. †Low-and-middle-income countries
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Caring responsibilities
Almost all the reviewed studies described YCs’ caring responsibilities as encompassing a variety of tasks (Bauman, et al., 2006; Cluver et al. (2012); Cluver et al. (2009); De Jong, et al., 2023; Evans & Becker, 2009; Grugel, et al., 2020; Kavanaugh, et al., 2021; Lane, et al., 2015; Mokhzan, et al., 2023; Robson and Ansell (2000); Robson et al. (2006); Skovdal, et al., 2009; Skovdal & Ogutu, 2009; Skovdal & Andreouli, 2011; Skovdal, 2011b; Skovdal, et al., 2013). In addition to caring for the adult family member, YCs were sometimes responsible for caring for younger siblings. Therefore, caring responsibilities included practical tasks like cooking and housework alongside physical and personal care like helping sick family members with getting dressed and taking a shower. Personal care sometimes involved feeding others or administering medications. YCs also expressed having to provide emotional support and advice to adult ailing relatives (Bauman, et al., 2006; De Jong, et al., 2023; Evans & Becker, 2009; Mokhzan, et al., 2023; Skovdal, 2011b).
Socio-cultural expectations
YCs reported an unspoken expectation that came with their roles and responsibilities (Lane, et al., 2015). YCs expressed that this expectation came from family members and the wider community (De Jong, et al., 2023). This provided a level of invisible social pressure that made young people feel like they did not have a choice (Skovdal, 2011a). Consequently, being a YC was described as an involuntary sacrifice (Robson and Ansell (2000)). This expectation was also linked to religious beliefs, with some studies reporting that there is an expectation of spiritual blessings that could come from this sacrifice (Robson and Ansell 2000; Skovdal & Ogutu, 2009). There was also an expectation that YCs would be recognised or looked up to in the community as they appeared to be learning a lot at an early age (Robson and Ansell 2000; Skovdal & Andreouli, 2011).
Early employment
YCs were also more likely to start working from an early age (Evans & Becker, 2009; Skovdal & Ogutu, 2009; Skovdal, et al., 2009; Skovdal & Andreouli, 2011; Skovdal, 2011b). Studies reported that young people started working at around the age of 12 years (Skovdal, 2011b). The type of jobs varied, with some studies reporting that young people engaged in odd jobs like recycling rubbish and other income-generating activities (Evans & Becker, 2009; Grugel, et al., 2020). Young people often reported a need to work in order to earn money to help relieve poverty and support the family since the adults were too ill to work (De Jong, et al., 2023; Evans & Becker, 2009; Robson, et al., 2006).
Impact on education
Since YCs were often preoccupied with caring responsibilities, studies reported that this often resulted in poor grades at schools and eventual dropout (Cluver et al. (2012); De Jong, et al., 2023; Grugel, et al., 2020; Robson, et al., 2006). For example, YCs were less likely than their peers to attend secondary school (Pufall, et al., 2014; Robson, et al., 2006). The poor grades were also partly explained by the inability to concentrate in school due to constant worry about an ill family member (Lane, et al., 2015). Similarly, dropping out of school was partly explained by young people having to move homes to another area to care for family members or to earn money (Robson, et al., 2006).
Impact on social connections
There were mixed findings on the social connections of YCs (Robson, et al., 2006). Young people felt that the caring experience allowed them to create stronger bonds with their sick family members and develop prosocial behaviours and sharing attitudes (Skovdal & Ogutu, 2009). Conversely, moving away from home to take care of family members who lived in other areas contributed to the YCs losing contact with friends they made at school (Grugel, et al., 2020; Robson, 2004). YCs also expressed experiencing stigma from their peers sometimes because of the type of illness (e.g., HIV/AIDS) their family members faced (Cluver et al. 2012; Skovdal, et al., 2009). This sometimes led to YCs feeling socially isolated (Robson et al., 2006).
Impact on mental, physical, and emotional health and wellbeing
Several studies described aspects of psychological distress that YCs faced (Cluver, et al., 2009; Mokhzan, et al., 2023; Robson, et al., 2006). Although fewer studies labelled mental distress as anxiety, depression, or stress (Bauman, et al., 2006; Grugel, et al., 2020; Majeed, et al., 2018), most studies identified symptoms of mental health problems like constant worry, sadness, fear, anger, and frustration (Cluver, et al., 2012; Lane, et al., 2015; Robson and Ansell 2000). Other studies described the experience of being a YC as traumatic, with feelings of helplessness (Lane, et al., 2015; Robson & Ansell, 2000; Robson et al., 2006).
Conversely, there were also instances where the experience of being a YC was associated with a sense of pride, resilience, hope, and increased self-esteem (Cluver, et al., 2012; Robson and Ansell (2000); Robson et al., 2006; Skovdal & Ogutu, 2009; Skovdal & Andreouli, 2011).
There were also examples of how being a YC impacted the general health and wellbeing of young people. These included the potential impact on physical health through experiences of sleeplessness, hunger, and malnutrition (Grugel, et al., 2020; Lane, et al., 2015; Mokhzan, et al., 2023; Skovdal, et al., 2009).
Discussion
To the best of our knowledge, this is the first study in recent years to synthesise the experiences and outcomes of YCs from LMICs. The available evidence primarily came from qualitative and/or quantitative studies with YCs caring for HIV/AIDS-affected family members in African countries. Sample sizes were generally small ( < 40) with the exception of six larger studies ( > 200), and there were no explicit differences between YCs based on gender. The six themes we identified described experiences and outcomes related to caring responsibilities, socio-cultural expectations, mental, physical, and emotional health and wellbeing, education, employment, and social connections. Our findings add to the global knowledgebase providing complimentary themes and explanations to enhance existing theories relating to YCs. This review also highlights important areas like socio-cultural expectations that have not been fully explored in previous research.
Although socio-cultural expectations of becoming a YC appear unique to YCs in LMICs, South Asian and other ethnic minority communities living in the UK and the USA expressed similar norms (Warren, 2023). This further highlights a greater need to consider culture when implementing policies and interventions to support YCs. This knowledge can provide an understanding of some of the barriers and facilitators as to why some YCs are less likely to access support (James, 2019) and what works for whom, when and in what context (Warren, 2023). It is possible that not all learnings from the international evidence base will be readily applicable to LMICs, but the reverse may help understand YCs from ethnic minority communities living in high-income countries.
Owing to the limited policy and practice guidelines for YCs in LMICs (Leu & Becker, 2017), more attention is needed to support YCs with education and early employment issues. Our findings also highlight key issues that could impact the YCs’ future. If YCs leave schools before the required age to seek employment due to poverty and financial issues, there is a risk that this will directly impact YCs socioeconomic status in the future (Kaiser & Schulze, 2015). Our findings align with the wider literature in terms of education but only partly in terms of employment. For example, in the UK, Brimblecombe et al., (2020) found that YCs were more likely to be unemployed, but when YCs were employed, they had lower earnings, similar to LMICs. One possible explanation for this could be the types of jobs YCs are involved in.
Although the majority of the caring responsibilities identified in this review were similar to YCs in high-income countries (Nagl-Cupal, et al., 2014), Evans and Becker (2009) highlighted that YCs living in LMICSs were more likely to carry out these duties with the additional pressures of having to retrieve water from long distances and look after animals and crops. Similarly, care recipients varied and encompassed family members and relatives. However, our findings suggest that it is more common for these relatives to include aunts, uncles, and grandparents (Lane, et al., 2015; Majeed, et al., 2018; Mokhzan, et al., 2023; Robson. & Ansell, 2000; Robson et al., 2006; Skovdal & Ogutu, 2009; Skovdal, et al., 2009; Skovdal, 2011b). One study also highlighted that YCs in LMICs may even care for elderly neighbours (Robson & Ansell, 2000). Whereas in countries like the UK, YCs were more likely to be caring for parents and siblings (Warren, 2023). The care recipients also experienced a variety of illnesses that included dementia and mental health problems, while HIV/AIDS was the most common illness in LMICs.
Similar to studies conducted in high-income countries (Chevrier, et al., 2022; Chikhradze, et al., 2017; Fleitas Alfonzo, et al., 2022; Lacey, et al., 2022; Saragosa, et al., 2022), the reviewed studies also revealed that being a YC has a negative impact on children and young people’s mental, physical, and emotional health. In addition to similarities in physical health problems like sleep deprivation (Grenard, et al., 2020; Haugland, et al., 2020), YCs in LMICs also experienced malnutrition or undernourishment. Although this is a common problem faced by children and young people in LMICs, it is possible that YCs are disproportionately affected. As for mental and emotional health, our finding corroborates the impact of caring on YCs mental health and wellbeing as frequently highlighted in other studies. Resilience and a sense of pride and hope was also highlighted, suggesting that providing care for others enhances social and emotional development (McDougall, et al., 2018; Stamatopoulos, 2018). This corresponds to an increased sense of self-efficacy, empathy, and compassion. Nonetheless, symptoms of negative mental health outcomes among YCs appear common across regions.
The findings of this review also highlighted mixed experiences of social connections. YCs may establish closer connections with family members during the caring process while experiencing a breakdown in friendships with their peers. The latter aligns with previous studies suggesting that YCs are more likely than non-carers to experience loneliness (Chikhradze, et al., 2017; Wepf & Leu, 2022). Similar to international studies, the factors contributing to the breakdown in social connection with peers include stigma and the lack of understanding from others (Stamatopoulos, 2018). As for familial bonds, this is also common in the wider literature since YCs often report stronger connections with the care recipient (especially if this is a parent) due to growing interdependence (Bou, 2023). YCs become dependent on family members for social connections since there are limited opportunities for socialisation outside the household.
This review provides evidence that YCs in LMICs have a wealth of caring responsibilities which impact their mental, physical, and emotional health and wellbeing, education, employment and social connections. YCs are also influenced by socio-cultural expectations. Therefore, decision-makers should consider these factors when developing policy and practice guidelines to ensure YCs in LMICs are sufficiently supported. However, in line with evidence-based practice, more research is needed in this area, particularly in countries not well represented. More specifically, rigorous quantitative studies controlling for factors such as country-level socioeconomic status, culture, family structure, YCs’ age and gender, and the care recipient’s illness is urgently needed. To provide suitable interventions and programmes, another important next step will be to further understand emerging themes and identify the barriers and facilitators to supporting YCs in LMICs, such as the availability and costs of care homes. An understanding of this is essential to inform pathways to services.
Apart from the contribution of knowledge that this review provides from an understudied region, a clear strength of this scoping review is the synthesis of studies using a systematised search strategy and rigorous screening and data analytic process involving a lived-experience researcher (NAR). We also acknowledge some limitations of our study. First, some studies could have been missed during the review process due to restrictions in the search strategy and the application of the eligibility criteria. However, we worked with an experienced research assistant and research librarian and independently applied the eligibility criteria and coding framework to increase the accuracy, consistency, and quality of the study. Second, this review revealed that even among LMICs, there are still some countries where there is no or little research evidence on YCs. Therefore, despite similarities in terms of social and economic disadvantages, any attempts to generalise our findings to LMICs not represented in this review should be undertaken with caution. Third, a formal quality assessment was not conducted on the body of evidence. Although this is common among scoping reviews, this approach also allowed the team to review a range of publication types, including books and theses. It is also noted that our review is limited to data from studies conducted within the last 23 years from specific LMICs. While it could be argued that including data from high income countries could increase the generalisability of our findings, the approach outlined in this review ensures the evidence is relevant to LMICs, aligned with current standards and practices, and addresses contemporary issues.
Although this is an under-researched area, YCs in LMICs take on an overwhelming amount of caring tasks that have the potential to negatively impact their mental, physical and emotional wellbeing. Being a YC also impacts the young person’s capacity to remain in education, maintain their social connections, and increase their chances of having to seek employment opportunities at an earlier age. Notably, an unspoken socio-cultural norm is that children in LMICs are expected to become YCs to their sick family members. More research is needed to understand these emerging themes, develop suitable interventions and programmes, and inform policies.
We thank the two young adults with lived experience as young carers who provided insight and advice throughout the study. We also acknowledge the Research Internship for Minority Students Programme at Edge Hill University, which recruited one of the young adults who consulted on the project.
Compliance with ethical standards
Conflict of interest
The authors declare no competing interests.
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