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Group-based caregiver support interventions for children living with disabilities in low-and-middle-income countries: Narrative review and analysis of content, outcomes, and implementation factors

Christine He1, Natalie Evans2*, Hamish Graham3*, Kate Milner4*

1 Western Health, University of Melbourne, Victoria, Australia
2 Melbourne Children’s Global Health, Murdoch Children’s Research Institute, University of Melbourne, Melbourne, Australia
3 Melbourne Children’s Global Health, Murdoch Children’s Research Institute, University of Melbourne, Department of Pediatrics, Royal Children’s Hospital, Melbourne, Australia
4 Neurodisability & Rehabilitation Research Group, Murdoch Children’s Research Institute, University of Melbourne, Department of Pediatrics & Department of Neurodevelopment & Disability, Royal Children’s Hospital, Melbourne, Australia
* Joint senior authorship.

DOI: 10.7189/jogh.14.04055

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Abstract

Background

Caregivers of children with disabilities in low-and-middle-income countries (LMICs) face unique demands and challenges. Group education and support interventions can benefit parental and child well-being, however there is limited data from LMIC settings.

Methods

We systematically searched databases (Medline, Embase, PsycINFO) for English language publications reporting on group-education and support-interventions for caregivers of children living with disability in LMICs, published between April 2012 and April 2022 using pre-established inclusion and exclusion criteria. Data from included studies was extracted and descriptively analysed in an online form, covering population, intervention, outcomes, and factors affecting implementation with key findings reported using narrative synthesis.

Results

Of 1557 studies identified, 31 studies were included for full text review. The majority of these were qualitative (n = 15, 48%) and from middle-income countries (n = 26, 83.9%). A minority of studies were conducted in low-income-countries (n = 4, 12.9%). Recurring themes in caregiver support-intervention content include child behavioural management (n = 17, 54.8%) and child activities-of-daily-living (n = 16, 51.6%). Almost all interventions were facilitated by non-specialists (n = 23, 74.2%). Interventions mostly employed active learning strategies, including group discussion (n = 17, 54.8%) and hands on activities (n = 11, 35.5%). Outcomes across studies suggest interventions have the potential to improve many aspects of caregiver and child functioning. Major barriers to intervention implementation included lack of caregiver support from family members, time constraints on caregivers and poverty. The social support networks and education regarding childhood disability in a broader social context provided to caregivers during support group interventions reduce the social isolation and stigma experienced by caregivers of children living with disability in LMICs. Relevant appropriately targeted intervention content and supportive facilitators contributed to caregiver satisfaction toward support interventions. Caregiver support group interventions established in LMICs should prioritise sustainability through building strong partnerships with government and non-for-profit organisations.

Conclusions

Caregiver support group interventions provide a promising avenue of improving caregiver and child outcomes for children living with disability in LMIC settings. More research is needed in this area.

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Disability describes the complex interplay between health conditions, personal circumstances, and the environment, which results in impairment in bodily structure and function, limitation in activity or restriction in social participation [1]. Experience with disability is individualised, as disability encompasses a wide variety of conditions and a spectrum of condition severities [1]. This is especially true of disability in childhood which evolves and changes over time due to physical, psychological, and social changes over the life-course, with many impairments having substantial impacts on both the affected child and their family [2]. Children living with disability are more likely to have poorer health, education, and well-being compared to age-matched peers with normal development [2,3]. Caring for a child with disability can be associated with strain on family relationships, increased depression, anxiety, burnout, fatigue, social isolation, and prejudice [46].

Globally, an estimated 53 million children under the age of five years live with a disability, with 95% residing in low-and-middle-income-countries (LMICs) [2]. Previous studies have found a strong reciprocal association between poverty and disability, with poverty increasing the likelihood of disability and disability accentuating poverty [7]. Limited access to formal early childhood intervention services, education, health care, allied health, ancillary and social services in LMICs, also often leads to further disadvantage for families, with caregiving responsibilities typically falling upon caregivers without any professional guidance or support [8,9]. Given the inaccessibility of specialist disability services in many LMICs, there is a demand for research into alternative community-based approaches, which may be appropriate for providing increased support for children living with disability and their caregivers.

Support for caregivers of children with disability is vital in optimising well-being of children with disability and their families [3]. In high-income-countries (HICs) caregiver support and education interventions have demonstrated effectiveness in assisting parents of children with disability to cope positively in their daily caregiver responsibilities [1012]. These interventions have led to improvements in adaptive parenting skills, parental well-being, and child behaviour [1012]. Delivery of interventions in a group-based format may provide an additional benefit of providing social support to a vulnerable population, who often experience social isolation and discrimination from their communities [13,14]. Group-based interventions may also utilise fewer resources when upskilling and supporting caregivers [10]. Thus, it appears that caregiver support groups may be a promising avenue to support caregivers of children with disabilities in LMICs.

Despite established evidence on the effectiveness of group-based education and support for caregivers of children with disability in HICs, there is limited research on the implementation of caregiver support and education in LMIC settings. One previous review on support-groups in LMICs for intellectual-disability identified 13 studies dating back to 1989 [15], but no reviews have explored children with other neurodevelopmental disabilities (e.g. autism-spectrum-disorder (ASD), cerebral palsy) in LMIC settings. This review aimed to explore: a) content and composition of current group-based caregiver support and education interventions implemented in LMICs; b) impact of these interventions on caregiver and child outcomes; c) barriers and enablers to implementation of these interventions in LMICs.

METHODS

Search strategy

We searched online databases (Medline, PsycINFO and Embase) for articles published from April 2012 to April 2022, describing educational support-group interventions for caregivers of children living with disability. The search strategy was constructed based on previously published literature with a similar research focus [10,12] with search terms related to caregivers, children, disability, and group education (Table 1). A full search strategy is available in Table S1 in the Online Supplementary Document. The search was restricted to papers in English for feasibility and LMICs in keeping with our study question.

Table 1.  Key search terms

Inclusion criteria

We included peer-reviewed studies reporting on any interventions for caregivers of children with disability in LMICs conducted in a group setting with an educational component. We defined educational component as any exercise aimed at providing instruction about disability, caretaking, or coping skills. Caregivers were defined as anyone with parenting or caring responsibilities for children up to the age of 18 living with disability. Studies could be condition-specific or non-condition specific and could be undertaken in any setting (e.g. community, health care service). We defined disability broadly, aiming to capture populations with neurodevelopmental, intellectual, and physical impairment, and including specific search terms (e.g. cerebral palsy, autism, Down Syndrome) for common impairments to maximise results. We used the World Bank classification for LMICs; including studies conducted in countries having a Gross National income (GNI)<13 205 US dollars per capita [16].

We excluded studies focusing on a single symptom or behavioural concern (e.g. sexual health of children with intellectual disability, feeding practices of children with cerebral palsy). We also, excluded interventions focused on chronic medical conditions (e.g. asthma, diabetes, cystic fibrosis, epilepsy) and behavioural or mental health disorders (e.g. attention deficit hyperactivity disorder, oppositional defiant disorder (ODD)).

Data extraction and synthesis

We imported search results into an online review manager (Covidence, Melbourne, Australia). Two investigators (CH and NE) independently screened all titles and abstracts and then reviewed the full text of all potentially eligible articles for inclusion. Disagreement was resolved through discussion between CH and NE. A consensus was reached on all disagreements; so, an independent reviewer was not required.

CH completed the data extraction using a data extraction form on Covidence developed by the authors of this paper. The data extraction form included study objectives, intervention details including: group size, duration, location of support group, facilitator characteristics, parental outcomes, child outcomes. Qualitative data was analysed on a tabulated spreadsheet and main themes were identified. Quantitative data was analysed using R Studio. We selected support-intervention content and mode of delivery as the primary outcome due to its relevance to the study objective. Secondary outcomes of interest included primary effects of the support interventions on caregivers and their children, enablers and barriers to intervention implementation, facilitator characteristics and country of intervention implementation.

We categorised studies based on the primary population of focus and described the interventions narratively, with tabular summaries. We mapped all reported outcomes in tabular format for easy comparison, with narrative synthesis of findings. We synthesised reported barriers and enablers into themes, using tables and narrative description. We followed PRISMA reporting standards [17].

RESULTS

Our database search identified 1557 unique studies, 69 were subjected to full-text review and 31 met eligibility criteria and were included in qualitative synthesis (Figure 1).

Figure 1.  PRISMA flow diagram of study selection.

Study characteristics

Most of the included studies were qualitative (n = 13, 41.9%) or involved non-randomised quantitative comparisons (n = 12, 39%), with four included randomised controlled trials (12.9%) (Table 2, Figure S1 in the Online Supplementary Document. Most included studies had a small sample size of less than 50 participants (n = 15, 48%). Nine studies (48%) had a moderate sample size between 50 and 100 participants, whilst four studies (13%) had a large sample size >200. A large proportion of identified studies were for caregivers of children with ASD (n = 8, 26%) or cerebral palsy (CP) (n = 7, 23%), or broadly defined neurodevelopmental disorders/delays (n = 7, 23%) (Table 2, Figure S1 in the Online Supplementary Document). While age was not always specified (n = 8, 26%), five studies (16%) focussed exclusively on the early childhood period (aged under five years) while the remainder included older children and some included adolescents (Table 2, Figure S1 in the Online Supplementary Document). Most studies were conducted in UMICs (n = 12, 38.7%) [1829] and LMICs (n = 14, 45.2%) [8,14,3041]. Four studies (12.9%) [4245] were conducted in LICs, and one study was conducted across multiple regions (Figure 2).

Table 2.  Study characteristics

Figure 2.  World map of distribution of group-based caregiver education and support programmes. *Numbers indicate numbers of included studies per country. One intervention was conducted across multiple unspecified regions and was not included in Figure 2.

Content and facilitators of group-based support interventions

Intervention content

Detailed descriptions of intervention content and materials were included in 20 studies (64.5%) [8,1823,2529,31,33,38,40,41,44,46,47]. Detailed intervention descriptions were linked in the supplemental material of five studies (16.1%) [30,32,35,36,43] and six studies (19.4%) [24,34,37,39,42,45] did not include a detailed intervention description. 22 studies (71.0%) [8,18,2023,29,3134,3641,4347] described completely new interventions and nine studies (29.0%) [19,2428,30,35,42] described interventions adapted from previously established interventions.

The different interventions identified by our review varied greatly in terms of the content they included, who facilitated the groups, how frequently and for how long they met, and what activities they did together (Table 3). The intervention content and design of identified studies were generally tailored to the disability type (e.g. Cerebral Palsy, Congenital Zika syndrome) and influenced by the sociocultural context (e.g. political, and cultural beliefs), with negligible difference attributable to broad country wealth classification or geographical location. Despite differences between caregiver support-groups, there were some recurring themes in the content of the support group interventions identified in our review, with more than half of identified interventions targeting child behavioural management (n = 17, 54.8%) [820,22,2431,38,40,42,44,47] and child activities of daily living (ADLs) (n = 16, 51.6%) [8,19,23,2529,33,34,36,40,41,43,45,47](Table 3). Other recurring topics covered include information about child’s disability (n = 14, 45.2%) [20,2229,31,37,38,40,43], advocacy for children with disability (n = 13, 41.9%) [8,14,22,2529,33,34,38,39,44], child play and leisure (n = 13, 41.9%) [8,18,23,2528,33,34,40,41,43,47], child development (n = 11, 35.5%), feeding practices (n = 11, 35.5%) [8,23,2528,33,34,39,43,45], parenting skills (n = 9, 29.0%) [8,19,21,24,33,34,39,42,43], and parental stress reduction strategies (n = 9, 29.0%) [18,19,22,29,38,40,42,44,47](Table 3).

Table 3.  Summary of composition and implementation of caregiver support group interventions organised by primary disability of child

Intervention duration

The frequency of support group convenance and duration of support group interventions varied greatly across studies. The duration of support group sessions ranged from one to four hours. The mean duration of included support group interventions was 2.82 hours (SD = 1.15 hours). Eleven studies did not include information on support group duration and were not included in calculation of mean intervention duration [19,3032,35,3739,41,44,45]. The shortest-term intervention was two days [38] and the longest-term intervention spanned 14 months [41]. The median length of support group interventions was 10.5 weeks. Two support groups convened five days a week [18,36], 16 support groups convened weekly [14,1923,2531,40,43,45] and four support groups convened monthly [8,33,34,41]. The frequency of support groups was unspecified or not applicable (i.e. short-term intervention) in nine studies [24,32,35,3739,42,44,47].

Group facilitators

The ‘Baby Ubuntu Early Intervention Programme’ was the only support group intervention with explicit government involvement [43]. All other interventions were implemented by non-governmental organisations.

Most interventions included in our review were facilitated solely by allied health professionals (occupational therapists, physiotherapists, or social workers), expert parents or community volunteers (n = 21, 67.7%) [8,14,18,19,2428,30,3234,36,3841,43,45,47](Table 3). Three (9.7%) studies utilised a combination of medical specialist and allied health facilitators [31,37,42]. Two (6.5%) interventions were facilitated by psychologists [20,21]. Five (16.2%) studies did not specify the qualifications and skills of facilitators [22,23,29,35,44]. The qualifications and profession of facilitators did not appear to differ according to country income level. Three identified interventions utilised a cascade training model of facilitation [19,39,40]. 19 studies provided information regarding support group size. The mean support group size was 9.95 participants per facilitator, the median group size was eight to ten participants per facilitator. The support group sizes ranged from three to 25 participants.

Teaching methodology

Most interventions in our review included an element of group discussion (n = 17, 54.8%) [14,1820,2328,31,32,36,37,39,42,47]. Hands-on activities such as practicing parenting skills under supervision were also often utilised in interventions identified by our review (n = 11, 35.5%) [18,19,21,23,24,29,32,37,39](Table 3).

Mode of delivery

Almost all studies included in our review involved in-person support groups, sometimes accompanied by home-visits [8,36,38,42,43,45] or telephone follow-up [24,38]. The purpose of home visits varied across interventions, however recurring themes include individualised goal setting, provision of follow-up training, engagement of other family members and tailored rehabilitation. One intervention was delivered via social media [19]. Almost half of the identified interventions included the child with disability in intervention activities (n = 14, 45%), typically through play therapy and practice of parent-child interventions under facilitator supervision.

Outcomes of group-based caregiver support interventions

Studies included in our review used a variety of measurement tools (Table 4) and reported diverse outcomes. Of the 31 studies, 15 studies (48%) included a quantitative measure of intervention efficacy and most (n = 13) demonstrated significant improvements in at least one parental or child outcome measure. Three included randomised-controlled-trials (75%) demonstrated significant improvement in at least one parental or child outcome, which is comparable to findings from non-randomised-control-trials.

Table 4.  Quantitative caregiver and child outcome measures used in studies on group-based caregiver support interventions

ABC – Autism Behaviour Checklist, ASIQ – Aggression and Self-Injury Questionnaire, BAI – Beck Anxiety Inventory, BDI – Beck Depression Inventory, BHS – Beck Hopelessness Scale, CARS – Childhood Autism Rating Scale, CDP – Communication Disability Profile, CFCS – Communication Function Classification System, COPM – Canadian Occupational Performance Measure, CSI – Coping Strategy Index, DASS – Depression Anxiety Stress Scale, DD-CDAS – Developmental Disorders-Children Disability Assessment Schedule, ECBI – Eyberg Child Behaviour Inventory, FBAS-ID – Family Burden Assessment Scale for Families with Children with Intellectual Disabilities, FES – Family Empowerment Scale, GARS2 – Gillam Autism Rating Scale, GMFCS – Gross Motor Function Classification System, GMFM-66 – Gross Motor Function Measure, HDRS-17 – Hamilton Depression Rating Scale, ISE – Inventory of Stigmatizing Experiences, KBMAQ – Knowledge of Behavioural Management of Aggression Questionnaire, KCPQ – Knowledge of Cerebral Palsy Questionnaire, MCSI – Modified Caregiver Strain Index, MSPSS – Multi-dimensional Scale of Perceived Social Support, PSEM – Parenting Sense of Efficacy Measure, PedsQLFMI – PedsQL Family Impact Model, PPC – Parent Problem Checklist, PS – Parenting Scale, PSI – Parent Stress Index, PSS – Parental Stress Scale, SDQ – Strengths and Difficulties Questionnaire, VABS – Vineland Adaptive Behaviour Scale, VSS – Viking Speech Scale, WHO5 – World Health Organisation Well-being Index, WHODAS – Child- World Health Organisation Disability Assessment Schedule for Children

Parental outcomes

Studies included in our review found significant improvements in caregiver coping skills [20,38], parenting skills [24,31] and insight on child’s condition [29,37](Table 5). There were inconsistent findings on anxiety, depression, and quality-of-life (Table 5). One Turkish study reported an unexpected increase in caregiver emotional burden following participation in an educational intervention for caregivers of children with intellectual disability (three-week intervention addressing characteristics of intellectual disability, behavioural management, emotional regulation and communication through lectures, group discussion, role-playing and storytelling) [29]. Despite positive effects on parental outcomes not always being reflected quantitatively, caregivers reported many qualitative benefits from support-group interventions including increased social inclusion within the community [25,33,42], improved self-confidence in caretaking [27,34] and improved mental well-being [18,42,43].

Table 5.  Effect of caregiver support group intervention on quantitative outcomes

*Statistically significant (P < 0.05) positive effect (benefit) on measured outcome, i.e. improved coping or reduced depression, anxiety etc.

†No significant effect (neutral).

‡Statistically significant (P < 0.001) positive effect (benefit) on measured outcome, i.e. improved coping or reduced depression, anxiety etc.

§Statistically significant (P < 0.001) negative effect (detriment) on measured outcome, i.e. increased stress, anger etc.

‖Statistically significant (P < 0.05) negative effect (detriment) on measured outcome, i.e. increased stress, anger etc.

Child outcomes

Fewer studies included in this review reported on child outcomes. Of these, findings included a reduction in quantitative measures of children’s disability severity [14,22,30,39] and parental report of improved emotional and behaviour adaptation [18] and family relationships [42](Table 5). One study identified increased stunting across the timespan of the support group intervention [8](Table 5).

Identified barriers and enablers of support group implementation

Half the included studies (n = 17, 55%) reported on barriers or enablers to intervention implementation (Table 6). The main identified barriers included time restraints for caregivers due to domestic and occupational responsibilities [27,28,33,34,39,42], lack of support from family members not involved in the intervention [18,24,34,42,43] and poverty [33,34,43,44]. Supportive facilitators [19,27,34,43] and caregiver solidarity through peer support [19,27,28,34] were identified as enablers of the success of support-group implementation in LMICs. Limited data suggests that highly relevant intervention content [43] and skilled knowledgeable facilitators [45] also contributed to the success of interventions.

Table 6.  Identified barriers and enablers of intervention implementation

DISCUSSION

This review identified and systematically described a small but important emerging literature regarding the design, implementation, and impact of caregiver support interventions for children with disabilities in LMICs. There were limited studies conducted in the lowest resourced settings, where there may be the greatest need for education and support interventions.

However, despite these limitations, studies included in this review provide important evidence to guide development and implementation of care and support for children with disabilities and their families in LMICs, as limited access to formal early childhood intervention services, education, health care, allied health, ancillary and social services in LMICs often leaves primary caregivers feeling alone and unsupported [8]. Family support is often the weakest part of health service delivery for children with disability, often consisting of little more than brief counselling or education [4850]. In exploring the content, delivery, and implementation factors that may influence success, we highlight six key lessons for future implementation and scale-up.

Lessons for future caregiver support interventions

First, the content of caregiver support interventions should be relevant and appropriate to participants and delivered in a way to promote individual and group learning and growth. Our findings regarding intervention content valued by caregivers are consistent with previous literature, which has shown that supporting ADLs in children with disability helps promote optimal child development by providing them with a sense of normality [3,23] and that effective management of challenging behaviours can improve the mental well-being of children with disability and their caregivers [31,51,52]. Behavioural problems are an important issue to address in neurodevelopmental disorders, as children with developmental disabilities are up to three times more likely to exhibit significant behaviour problems [53]. In a LMIC context, interventions should also aim to dispel myths regarding the origin of disability and alleviate feelings of blame felt by primary caregivers. Religion and superstition have a dominant influence on many South-East-Asian and African cultures, where childhood neurodevelopmental disability is often attributed to a curse from God or past personal failings [34,54,55]. Working with caregivers to reframe childhood disability can be beneficial towards caregiver and child well-being.

Second, caregiver support groups are an opportunity to expand social understandings of disability and challenge prejudicial social norms [8,14,22,2529,33,34,38,39,44] and build caregivers’ psychosocial coping strategies [18,19,22,29,38,40,42,44,47]. Addressing caregiver and community understanding of disability promotes greater acceptance of children with disabilities in their families and the community, fostering a more positive environment for children with disabilities to prosper [3,43]. Whilst modules dedicated to parental upskilling and emotional well-being can combat the high prevalence of carer burnout in caregivers of children with disabilities and optimise parental health such that they can effectively care for their children [56].

Third, facilitators are crucial to successful implementation of caregiver support group interventions and while decentralisation and use of non-specialist facilitators is attractive for many reasons, they must be properly supported to avoid excessive volunteer attrition. Cascade facilitation models, in which a master trainer coaches less experienced trainers, who in turn pass on their knowledge to a larger group of community volunteers, have been used for community health promotion activities allowing for interventions to have broader reach and greater sustainability [19,29]. In LMIC settings, where access to specialist services is often limited, non-specialist intervention facilitation is essential for providing ongoing cost-effective accessible support to caregivers [8]. However, despite the high promise of non-specialist facilitators, intervention developers should also be mindful of community members’ lack of formal health care training and capacity for handling any emergencies such as concerns for child abuse [57]. Furthermore, targeted selection of facilitators with the most appropriate skillset to support specific aspects of children’s disability, such as the involvement of psychologists to address behavioural problems and physiotherapists to address physical rehabilitation can contribute to improved positive outcomes and acceptance of support interventions [36]. Regular upskilling workshops and ongoing supervision of intervention facilitators by a health care professional may also contribute to the long-term success of caregiver support interventions.

Fourth, some of the greatest benefits of support groups comes from active peer-to-peer learning [34]. This may be particularly important for stigmatised groups, such as those with disability, enabling caregivers to find comfort connecting with peers in similar circumstances and facilitating social inclusion [26,33,42]. Limited data suggests that remote intervention delivery may be possible and facilitates strong social connection despite the remote nature of delivery, with additional potential benefits to cost-efficacy and access but also real challenges – particularly regarding access to technology and digital literacy [19,58].

Fifth, the caregiver support interventions should be designed and implemented with the broader health and social structures in mind, and with a long view to sustainability. Many of the barriers and enablers identified in our review could be proactively addressed by building strong relationships with local service providers and community leaders and being transparent about ongoing government and funding support [3,45]. Currently few caregiver support interventions are implemented through non-government organisations. Implementation research in routine health services and cost-effectiveness analyses may be important for supporting further exploration of sustainability of caregiver support interventions in the future.

Sixth, LMICs are diverse in their cultures, thus interventions should be adapted for different cultural contexts to appropriately align with community values and lifestyle for maximal sustainability [59]. Testing of the feasibility and acceptability of culturally adapted interventions should also be undertaken when implementing pre-existing interventions in a new country. Successful scale-up of interventions in LMICs is influenced by multiple factors including effective leadership, the fiscal environment and community engagement [5961]. Thus, it is integral to involve community leaders and local governments to ensure interventions align with pre-existing policies and systems [62].

Measuring and understanding outcomes

The findings of generally beneficial effects of caregiver support group interventions, irrespective of geographical and socioeconomic strata, were consistent with studies in high-income regions [11,63].Group-based support interventions for caregivers with children with disabilities have the potential to improve child problem behaviour outcome measures and caregiver parenting skills and overall quality of life, which is consistent with findings of reviews conducted on caregiver support interventions for caregivers of children with CP and ASD conducted in HICs [12,64]. However, results from individual studies were often mixed and quantitative measures did not always reflect qualitative feedback from participants.

For example, in terms of caregiver outcomes the higher emotional strain caregivers reported in Cenk et al’s. (2016) study may have been caused by caregivers fully understanding the prognosis and consequences of their child’s disability following education on their child’s disability [29]. Zuurmond et al’s (2018) study also identified increased stunting in children with cerebral palsy following intervention participation. The authors suggested that this finding may be confounded by the natural progression of cerebral palsy [8].

These inconsistent and sometimes unexpected outcomes, highlight the importance of ongoing rigorous implementation research and intervention monitoring and evaluation to fully understand impact, including potential unintended consequences of caregiver support interventions across settings moving forward.

Currently, variable outcome measurement and limited description of intervention theories of change make it challenging to know how various caregiver support group interventions effect change for different populations and in different contexts.

Future implementation research will benefit from development of more standardised outcome measurement approaches, guided by relevant frameworks (e.g. the International Classification of Functioning Disability and Health for Child and Youth – ICF-CY and the Consolidated Advice for Reporting ECD implementation research (CARE) guidelines [65,66].

Limitations

Longer duration follow-up for outcome measurement and cost-effectiveness data are also needed. Our database search was restricted to the English language for feasibility. Meta-analysis of outcomes was not undertaken due to the great heterogeneity of investigated primary outcomes in included studies. Most identified studies were qualitative and reflected a small sample size. Very few studies were RCTs and even fewer followed CONSORT guidelines [67]. We were unable to perform a meta-analysis due to great variability in studied outcome measures. Generalisability of findings from this review were reduced by the great variability in study methodology and sociocultural contexts in which interventions were implemented.

CONCLUSIONS

A small but increasing body of literature demonstrates the benefits of group-based support interventions for caregivers of children with disabilities in LMICs in improving caregiver and child outcomes, as well as core intervention content, composition, and barriers and enablers to successful implementation. To better understand adaptation of caregiver support interventions across contexts as well as factors required for effective and sustainable impact at scale, further implementation research and intervention monitoring and evaluation is required including more clearly articulated intervention theory of change, greater standardisation of outcome measures, longer term follow-up and cost-effectiveness data to better inform policy and practice. Specifically, cohort studies investigating the long-term impact of interventions on caregivers of children living with disability and their communities may be beneficial.

Additional material

Online Supplementary Document

Acknowledgements

We are grateful to Poh Chua, the Academic Support Librarian at the Royal Children’s’ Hospital, Australia for her assistance in developing the search strategies.

[1] Funding: This research was supported by Grand Challenges Canada, through the “Creating Hope in Conflict: a Humanitarian Grand Challenge” scheme, sponsored by the US Agency for International Development (USAID), the UK department for international development (DFID), and the Ministry of Foreign Affairs of the Netherlands (Grant ID: R-HGC-POC-1904-24744). HRG received salary support from the National Health and Medical Research Council (NHMRC). HRG and KM received salary support from the Royal Children’s Hospital Foundation (Clinician-Scientist Fellowship scheme). The funding body did not have a role in the design, planning, implementation, or analysis of the Mighty Children program.

[2] Authorship contributions Christine He was involved in the acquisition, analysis, and interpretation of data for the work. Natalie Evans, Hamish Graham, and Kate Milner were involved in the conception of the work. All authors were involved in drafting the work and reviewing it critically for important intellectual content, final approval of the version to be published and agree to be accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved.

[3] Disclosure of interest: The authors completed the ICMJE Disclosure of Interest Form (available upon request from the corresponding author) and disclose no relevant interests.

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Correspondence to:
Kate Milner
Royal Children’s Hospital
50 Flemington Rd, Parkville, Victoria
Australia
[email protected]
Christine He
Western Hospital
160 Gordon Street, Footscray, Victoria
Australia
[email protected]