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Moving beyond prevalence studies: Screening and interventions for children with
disabilities in low- and middle-income countries
Aisha K Yousafzai,1* Paul Lynch,2 Melissa Gladstone3
1Department of Paediatrics and Child Health, Aga Khan University, Karachi, Pakistan
2 Department of Inclusion, Special Needs, School of Education, University of Birmingham,
Birmingham, UK
3 Department of Women and Children’s Health, Institute of Translational Medicine, University of
Liverpool, Liverpool, UK
*Corresponding Author:
Department of Paediatrics and Child Health,
Aga Khan University,
Stadium Road, PO Box 3500,
Karachi, Pakistan,
Email: [email protected]
Tele: +92 213 486 4733
Fax: +92 213 493 4293
1
ABSTRACT
Research understanding the lives of children with disabilities in low- and middle-income
countries has predominantly focused on prevalence studies with little progress on evidence based
service development. At the same time, global attention in child health has shifted from child
survival strategies to those that bring child survival and development together. This review
examines whether intervention research can be better aligned with current theoretical constructs
of disability and international guidelines that advocate for the realization of rights for children
with disabilities and inclusive early childhood development.
2
INTRODUCTION
This year, the ‘State of the World’s Children’ report published by UNICEF was dedicated to
children with disabilities (CWD) who represent an estimated 1 in 20 children aged less than 14
years.1 This paper, like several others, draws attention to the lack of inclusion of CWD in the
development agenda and the negligible attention given to service development and legislation
promoting wellbeing and opportunities for this population.1-4 Research understanding children
with disabilities in low- and middle-income countries (LMIC) has predominantly focused on
epidemiological questions,3 while related research on effective interventions has been sparse.
The purpose of this review was to describe and critique intervention research on CWD living in
LMIC in light of current debates and theoretical constructs on disability in order to make
recommendations about future research directions that may increase inclusion and participation
of this population. Peer reviewed articles on interventions for CWD in LMIC published since
2000 were sought from electronic databases (BEI, ERIC, ProQuest, PsycInfo, PubMed and
Google Scholar). The primary objective of this paper was to describe the breadth and quality of
intervention research about CWD in LMIC. The secondary objectives of this paper were to: (1)
describe the challenges of intervention research and make recommendations about how future
research can better utilize current disability constructs; and (2) discuss how the research agenda
for CWD can be better aligned in existing child health and development priorities. Given the
paucity of intervention research for this population, the recommendations in this paper also
incorporate the discussions and field observations of the 3 authors who have researched
childhood disability in LMIC over the last 10 years. A list of abbreviations and acronyms used in
this paper is shown in Box 1.
3
UNDERSTANDING THE RIGHTS OF CHILDREN WITH DISABILITIES:
IMPLICATIONS FOR STRATEGY DEVELOPMENT
The United Nations Convention on the Rights of Persons with Disabilities5 (UNCRPD) enshrines
a social model of disability, which focuses on reducing or eliminating actions that discriminate
and therewith hinder access for persons with disabilities (PWD). These barriers could be the
result of the built environment, but moreover the result of social and attitudinal barriers such as
stereotypes, prejudices and other forms of paternalistic and patronising treatment. The UNCRPD
states a clear need to recognise the valued existing and potential contributions made by PWD to
the overall wellbeing and diversity of their communities, and ensure the promotion of the full
enjoyment by PWD of their human rights, fundamental freedoms and of full participation to
advance human, social and economic development.
The International Classification of Functioning, Disability and Health5 (ICF) provides a practical
way of understanding the complexity of disability and offers a way forward for researching and
advancing rights for PWD.7 Disability is defined by impairments (structure and the functions in
the body that are affected), which result in activity limitations and participation restrictions (e.g.
barriers to going to school). The framework recognises that an individual’s functioning is an
interaction between health, environment and personal factors. For example, assessment and
design of interventions are based on the child’s profile of functioning defined by activities and
participation influenced by barriers and facilitators in the child’s environment.8 The framework
encourages the collection of data to inform strategies, which support a child’s (re)habilitation
needs and promotes opportunities and quality of life through reducing barriers to participation.9
4
Similarly, the capability approach10-11 assesses the relevance of impairment and disability in
designing fair and inclusive institutional and social arrangements. In capability terms, it does not
matter whether a disability is biologically or socially caused; it is the scope of capabilities a
person can choose from and the role the impairment plays in this set of choices which is more
important. In many respects it considers what people are actually able to do and how they can be
enabled to achieve their objectives.11
Community-based rehabilitation (CBR) has been a recommended approach for adults and
children with disabilities promoted by the Word Health organization (WHO) since the 1970s.
Previously, CBR was criticized for not adequately addressing the medical rehabilitation needs of
PWD, focusing on economic development, neglecting the psychosocial wellbeing of individuals
and not having adequate participation of PWD. The focus on care in the community failed to
recognize the importance of partnership with services (e.g. health, education).12 The updated
WHO Guidelines for CBR13 considers a twin-track approach ensuring (i) disability issues are
integrated in mainstream development work, and (ii) more targeted activities for PWD are
implemented where necessary.
It is important to establish a conceptual framework for research to inform policies and practices
that draw on the ICF, the capability approach, the UNCRPD and the guidelines for CBR which
focus on identifying CWD, and enhancing quality of life, developmental potential and
participation in society.
APPROACHES TO THE IDENTIFICATION OF CHILDREN WITH DISABILITIES
5
Identifying CWD is the first step in providing interventions. Researchers debate over best
methods of identifying CWD at population level.14
General screening and survey methods for childhood disability
Survey methods used to identify CWD include the Ten Questions Questionnaire (TQQ). 15-17 The
TQQ identifies seizures and impairments in cognition, motor, vision and hearing and seizures for
children aged 2-9 years by caregiver report. There have been concerns that the TQQ over-
identifies children with hearing difficulties and seizures, but also that it only reliably detects
moderate to severe disability and milder conditions may not be identified or understood as a
problem by the family. For example, items such as “does the child learn to do things like other
children his or her age?” is an item that relies on the awareness of families to detect milder
learning difficulties and therefore may underestimate levels of impairment. Good sensitivity and
specificity is demonstrated particularly if paired up in a two-stage approach where first screening
and then more extensive assessment is conducted. The TQQ has been incorporated into the
‘Early Child Development’ module in the third round of the UNICEF Multiple Indicator Cluster
Survey Programme. This has proved effective in comparing countrywide rates of childhood
disability and has the potential for determining investment in programmes that target specific
needs of CWD or their inclusion in mainstream services.
Incorporating the ICF principles in user friendly and globally applicable screens are emerging.
Teams in Nepal and Bangladesh have created the Ten Questions Plus18 and the Washington
Group of Disability Statistics are piloting a tool with 14 questions which identify PWD in terms
of functional limitations and limits to independent participation in society.19
6
Key informant methods
The key informant method (KIM) is an approach where knowledgeable members of the
community (key informants) are trained to effectively identify children with moderate-severe
physical impairments, sensory impairments and epilepsy.20-21 These children are then screened by
medical professionals and referred on for appropriate health or educational interventions. A
recent study in Bangladesh demonstrated KIM as having high rates for case detection, but low
specificity particularly for hearing impairment.22 Many proponents of KIM advise that it allows
a direct connection to appropriate referral services, which survey and screening methods may not
do. In this way, KIM allows for a pre-emptive mapping of referral services by collating
information on service availability and affordability. Through its reliance on community
volunteers and networking it can engage local stakeholders and build capacity and knowledge
sharing.14, 23 Through community involvement, the KIM and similar participatory rural appraisal
approaches encourage strategy planning that is locally feasible and relevant.
Developmental screening
Identifying children at risk of developmental difficulties can be done using developmental
screening tools where simple questionnaires are used to assess normal attainment of milestones.
These can be parent-reported (Ages and Stages Questionnaire (ASQ)/Parents Evaluation of
Developmental Status (PEDS))24-25 or observed (Denver II).26 Children found to have delay on
age appropriate standardized norms are then referred for further assessment. This is not often
possible in low resource settings and it is disputed as to whether developmental screening tools
7
fulfill screening criteria and should be promoted for universal use. There is often a balance
between high sensitivity (identifying all children with delays) and erroneously identifying
children who do not have true delays (specificity).27 Furthermore, the definition of abnormal is
not always clear and may depend on the availability of diagnostic and remedial services in
countries.
Although , there is evidence of benefit in early intervention programmes for children with
hearing loss, intellectual disabilities and autistic spectrum disorders,28-29 it is still not entirely
clear what effect early intervention has on all childhood disabilities. Early intervention may
lessen the impact of a disability on the functioning of the child and family, and early diagnoses
may allow families to adapt to difficulties their child faces.30 Many argue that screening is not
effective but surveillance (where primary care practitioners opportunistically ask flexible
questions about a child’s development at every visit and children identified as at risk are then
provided with advice and referred) is what is needed. Some countries such as the US still
advocate using a screening tool as part of this approach.31
There have been a number of developmental screening or surveillance tools adapted or
specifically created for LMIC. The Denver II was adapted and translated for WHO studies in in
many LMIC,32-37 but may not be sensitive and specific enough.38 Parental report measures such as
the ASQ or the PEDS39-42are popular and are good detectors of developmental delay.43-49 These
tools are beneficial as they enable parents to be actively involved in the evaluation of their
children. Often tools are not adequately adapted or validated for a local population.50-53 A small
8
number of developmental tools have been created or adapted specifically for developing country
settings 54-55 some with good measures of validity and reliability.
The challenge with many tools is that they do not link screening to services; therefore, limiting
the advantage of screening. The Guide for Monitoring Child Development in Turkey is an
example of a screening tool using open‐ended interviewing to gain information on child
development followed by appropriate advice.56
INTERVENTIONS FOR CHILDREN WITH DISABILITIES: IMPACT ON CHILDREN
AND FAMILIES AND IMPLICATIONS FOR RESEARCH AND SERVICES
Evidence based strategies for screening and appropriate advice in LMIC will require innovative
and feasible models given the resource limitations. One such innovation in Bangladesh was the
creation of ‘Developmental Therapists’ to address the multiple therapeutic needs of CWD in a
context where access to specialists was limited.57 However, the design of the interventions must
also consider that many families are unlikely to make frequent visits to rehabilitation facilities;
therefore, a greater focus on home and community based interventions is needed.
Six intervention studies for CWD in LMIC were identified (table 1).58-63 The studies, from
Bangladesh,58,61 India,62 Kenya,59 Malawi66 and Vietnam63 are diverse with respect to disability
and intervention content (e.g. addressing issues of feeding communication, development and
self-help) making comparisons difficult. However, a common feature across each intervention
strategy is the involvement of primary caregivers to support home-based care of CWD. Kelly
and colleagues,60 report that some of the challenges faced by primary caregivers are at the
community level (e.g. stigma), and that intervention design must consider community level
9
enablers and barriers such as those reported in a combined community-based and family-based
model implemented in a slum community in India.62
Drawing conclusions about the external validity for the six studies is challenging. There is only
one randomized controlled trial,61 and only two studies include a control comparison in the
analysis.61,63 Two of the studies include a pre and post measure from either quantitative58 or
qualitative data,59 and the remainder are descriptive evaluations based on case studies or a case
series. All have relatively small study samples, and where reported, the attrition rate is high. 58, 61
Finally, the categories of outcome measures are variable; a direct measure of child outcome is
reported in three studies,58, 61-62 a caregiver report of child progress is reported in two studies,59-60
and most studies report some outcome related to the caregiver’s wellbeing or perception of
support. However, little information is available on the reliability and validity constructs of the
assessment tools used for these populations. In sum, as pilot interventions to guide trials and
future evidence-based practice, authors should report information on compliance, dosage, quality
(e.g. skills of the trainer) and challenges and enablers for the intervention. Multiple levels of
outcome measures will be useful that address change at the level of the child, family, trainer and,
if relevant, the community. Box 2 describes the potential challenges when undertaking
intervention research for CWD.
Impact of caring for children with disabilities on caregivers
Understanding the impact of caring for CWD on caregivers and the extent to which current
services consider the role and the context of caregivers is critical. Seventeen studies were found
that explored the impact of caring for CWD on caregivers (table 2).64-80 A common set of themes
10
were reported in qualitative studies, which highlight the need for interventions to raise awareness
on childhood disability, reduce social stigma, build support networks, and support mothers who
were often taking the greater caregiving responsbility.64, 66, 74, 80 In all settings, families reported
inadequate services and resources. In Pakistan, parents of children with intellectual disabilities
reported the major barrier to care seeking was not availability of services, but lack of information
or money. On average, there was a 2-4 year gap between the child initially being identified and
contact with a health care provider.74
Consistent with findings from high income countries, studies in LMIC report high levels of stress
among caregivers of CWD.65, 68, 75-76, 79 Child characteristics associated with stress include caring
for a girl with disability,75 caring for older CWD 75 and child behavioural problems.76 Caregiver
characteristics associated with stress include being a younger mother65 and poor maternal
adaptation to the child.76 In Pakistan, mothers were found to have significantly higher levels of
stress compared with fathers;74 however, no significant differences were reported between
parents in Lebanon where the degree of social support, stress and paternal education status were
associated with coping capacity.65 Similarly in Vietnam, community participation (e.g. contact
with relatives or friends, participation in religious gatherings) were also associated with stress
and coping.79 Mixed findings were reported from the intervention studies for CWD on the
treatment effect on parental stress. In an intervention to improve child feeding skills, maternal
stress was reduced,58 while in another study caregiver participation in a training programme
increased stress.61 In the former, stress may be highly associated with the feeding challenges of
the child whereas in the latter case, increased knowledge and time on interventions may have
contributed to stress.
11
Physical health and wellbeing of the caregivers is of particular importance for those caring for
children with physical disabilities; however, there has been little research on exploring the
impact of caring for CWD on the physical health of caregivers, especially in contexts with
limited access to assistive devices. An exploratory study in Kenya found all caregivers caring for
children with moderate-severe motor impairments reported chronic pain.68
The implications for intervention strategies from these studies about caregiver experiences
highlight the need for focus to shift from the child alone to the child, family and wider
community. Community awareness strategies about childhood disability are needed in order to
mitigate the stigmatization of CWD and their families. Interventions that reduce some of the
daily stress experienced by caregivers include approaches to harness family support strategies to
increase social and family support.
Previous research from LMIC has consistently described the caregivers’ need for information
about the child’s condition.3 Importantly, more recent work has examined the range of
information required by caregivers; for example, in Iran, learning from the experiences of other
families who cared for a child with a similar condition was important.73, 77-78 In Bangladesh,
despite having information from health workers; care seeking practices by mothers of CWD
were influenced by the elder generation who preferred to seek traditional or spiritual
treatments.71 Knowledge dissemination requires a strategy that ensures consistency across
sources of information, conflict resolution between contradictory sources of information, peer
learning and access to information in a local language. Finally, studies about caregivers also
impart important learning about the delivery strategies of interventions that should take into
consideration the circumstances of caregivers which impact on uptake of potential services.70, 72
12
CONCLUSIONS
Considerable progress has been made over the last decade in recognizing the significant numbers
of CWD globally and the associated risks and consequences for life outcomes. Opportunities to
include the reporting of childhood disability have been capitilised upon in national surveys.
However, this has not resulted in a significant shift in political commitment and investment in
programmes. It is now justified to go beyond counting CWDs. International agreements such as
the UNCRPD in combination with the ICF, the Capabilities Approach and CBR provide a
framework for intervention design and delivery. By using these frameworks and approaches we
have opportunities to link screening with services. It is recognised that a combination of formal
services (with family based approaches) and family participation is needed in intervention
design. For too long, the care for CWD in LMIC has been family led with little professional
support. Learning from the experiences and solutions of these families may enhance the support
and advice provided in formal services. These strategies need to be combined with community
awareness to reduce the challenges families experience as a result of stigma and remove barriers
to participation in health, education and community life. Robust studies are required to inform
policy and practice resulting in external validity of findings, analysis of process, and information
on cost savings. Box 3 outlines the ways forward for intervention research.
Finally, international guidelines have been advocating for twin-track approaches for the inclusion
of PWD in the mainstream development agenda, in addition to targeted interventions.
Unfortunately, few research studies have taken the opportunity to review subsets of data on
CWD in child health and nutrition studies. Within the child health agenda, global attention has
13
been shifting from survival alone to strategies that enable children to thrive and develop
healthily. Addressing the needs of CWD in mainstream early childhood development
programmes is an opportunity for childhood development and disability researchers to work
together for common goals.81 Inclusive early childhood systems have the potential to serve as
foundations for a diverse and fair society.
Funding: No funding
Competing Interests: None
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Box 1: List of abbreviations and acronyms
ASQ: Ages and StagesCBR: Community Based RehabilitationCWD: Children with DisabilitiesICF: International Classification of Functioning, Disability and HealthKIM: Key Informant MethodLMIC: Low- and Middle-Income CountriesPEDS: Parents Evaluation of Developmental StatusTQQ: Ten Questions QuestionnaireUNCRPD: United Nations Convention on the Rights of Persons with DisabilityWHO: World Health Organization
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Table 1: A summary of intervention studies for children with disabilities in low- and middle-income countries
ReferenceCountry
Objectives Design Sampling and Population
Intervention (content, delivery approach and duration, delivery personnel)
Outcomes Measured
Key Results Limitations
Adams et al. (2011)58
Bangladesh (urban slum)
To evaluate a low cost feeding intervention for children with moderate-severe cerebral palsy (CP)
Quasi-experimental -with time lagged control
Opportunistic sampling37 children with moderate-severe CP 1-11y (average 3y 11m)
Training and support of mothers to improve child’s dietary intake, ease and efficiency of feeding. Techniques: supervised feeding practice, videos, discussions and traditional pedagogy. Children provided with low cost seat, plastic tea spoon and cup
6 group sessions of 4-5 mother/child pairs every 2 wks
Facilitator: Generic therapist
Pre and Post measures.Child: Chest health (maternal report on frequency of respiratory illness every 3m), nutritional status (weight-for-age (WAZ), mid upper arm circumference (MUAC)), Video observation of feeding skills and affect during mealtime.Mother: Stress (Self-reporting questionnaire, SRQ 20), report on time spent on feeding
Significant improvements pre and post training for child:Chest health (p0.05), nutritional status (WAZ p0.02, MUAC p.001), Mean fluid intake (p0.01), affect during feeding (p0.06), feeding skills (maturity of oral feeding p<0.001).
Significant reduction in maternal stress (p<0.001) and time spent on feeding (p0.005)
60% attrition
No control comparison
Small sample
Gona et al (2013).59
Kenya (rural)
To explore the effects and development potential of a home-based intervention using augmentative and alternative communication (ACC) for
Case series(Pilot study)
Purposive-convenience sampling10 children with complex communication needs (limited or no functional communication or a recognized
Individualized interventions determined by child’s communication profile and care environment. Caregiver is agent of change. Options for approaches: (1)
Qualitative interviews pre and post intervention with caregivers to explore: Child’s
communication with caregiver and with other
Interview Themes Communication
Process: Pre INT- Caregivers made trial and error attempts to support communication. Post INT, new ways of communication
No objective measure of effect on child
No control comparison
Small sample
26
children with complex communication needs.
condition, e.g. CP)4-12y
Objects of reference (items in a box to reference a meaning- e.g. cup for thirst), (2) Total communication (mix of signs, speech and referencing), (3) Graphic symbols (e.g use of picture boards), (4)Intensive-interaction (broaden communication with caregiver through playful interactions)Delivered at home for 6m
Information on delivery personnel not reported
people Caregiver’s
communication with the child
Available support
caregiver’s view of the future
were explored. Normality: Pre
INT- Caregivers desired child to communication ‘as other children’ but post INT, had realistic expectations.
Struggle: Pre INT- perceived isolation, post INT- sense of support with family members, positive shift of language about caring for child, and less superstition
Kelly et al. (2012)60
Malawi (rural)
To explore the role of Community Health Visitors (CHVs) to support parents between home visits by Portage staff.
Case series (Pilot study)
Convenience sample of families from a Pilot Portage programmea delivered at a Child Development Centre10 families with CWDs, aged 1-5y4 CHV3 Portage Trainers
CHVs trained to make home visits to train parents in Portage (demonstration, observation and feedback), discuss activities with parents and help to adapt in daily routine, and write visit reportPortage Trainers supervised CHVs in weekly meetings and fortnightly home
Mixed methods interviews 9m after start of home visiting with parents and CHVs
Parents: Happy with CHV support, perceived some progress in child’s progress, lower satisfaction needs of child being met. CHVs: Personal satisfaction, perceived relationship of trust with family and in provision of support. Challenges with inclusion and dealing with stigma at the community level.
No objective measure of progress in child or CHVs skills
No control comparison
Small sample
27
visit observationsMcConachie et al. (2000)61
Bangladesh (urban and rural)
To determine whether an outreach parent training programme is effective in promoting adaptive skills in children with CP.To determine whether an outreach parent training programme would be more beneficial than minimum intervention for rural families
Randomized controlled trial evaluating 3 INT: (1) Distance Training Package, (2) Mother-child Groups, (3) Health Advice (minimum INT)
92 children with CP aged 1.5-5y. Randomly assigned to INT: Urban population to Distance Training (n=24) or Mother-child Groups (n=21). Rural population to Distance Training (n=23) or Health Advice (n=17)
Distance Training: Parents receive 1-2hr training to use a pictorial manual illustrating activities, positions and learning materials. Mother-Child Group: Parents and children attend a group session led by a physiotherapist to practice activities of daily living and promote development activities. Health Advice: Onetime session on basic health education and care for child with CP. Parents were provided with early learning materials.
Child: Nutrition status, Behaviour (Independent Behavioural Assessment Scale- locally adapted)
Maternal: Stress (SRQ-20), Adaptation to the child (Judson Scale), Family Support Scale, Parental Knowledge
Rural: NS decrease in maternal stress, improved maternal adaptation over time in Distance Training and Health Advice (p<0.02), improved formal support in Distance Training and Health Advice (p<0.02), no change in maternal knowledgeUrban: Increase in maternal stress, improved maternal adaptation overtime in Distance Training and Mother-Child Groups (p<0.02), improved support in Mother-Child Group (p=0.025), improved maternal knowledge in Distance Training and Mother-Child Groups (p<0.02)Overtime, lease progress in child’s adaptation in Health Advice Group
29% attritionRole of malnutrition not addressed
Sen et al (2009).62
India (urban slum)
To introduce and evaluate a needs based intervention for children with disabilities involving family and community
Case study:A community participatory strategy to develop, implement and evaluate a community-based strategy to support
22 CWD identified in community-based strategy and received INT.
Community participatory strategy: community awareness meetings, training of field workers and community volunteers, identification of CWD and needs
Case study documentation of strategy over implementation period (e.g. number of community meetings held, CWD identified, home visits made,
Lessons learned on development, implementation, feasibility, enablers and challenges of a community based strategy to support CWD.
Impact not evaluated on CWD
No control comparison
28
children with disabilities in an urban slum
assessment, home intervention, evaluation.
success stories, challenges)
Shin et al. (2009)63
Vietnam (urban)
To assess the efficacy of a home-based intervention for children with intellectual disabilities (ID)
Controlled experimental design.
30 children with ID identified by kindergarten teachers and randomly assigned to INT or CTRL (except 2 cases who self-elected group).
Children aged 3-6y
Portage Programme
1 hr weekly sessions over 1 year.
Delivered by trained special education teachers
Pre INT, 6m and 12m (endline) assessment of child using Vineland Adaptive Behavior Scales (VABS).
VABS translated and culturally modified and tested for study population
Motor skills and personal care skills significantly improved over time more in INT group than CTRL (p<0.05)
Small sample
Random assignment was limited.
a Portage: Early intervention programme for children with disabilities to help families promote child’s development and skills for activities of daily livingAbbreviations: ACC- Augmentative and Alternative Communication, CDC- Child Development Centre, CHV- Community Health Visitor, CP-Cerebral Palsy, CTRL-Control, CWD- Children with Disability, ID- Intellectual Disabilities, INT- Intervention, NS-Non significant
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Box 2 Challenges for intervention research
Adequate sample size and level of homogeneity within impairment groups is frequently difficult to achieve for studies. The creation of multisite networks for research in low- and middle-income countries may be a way forward.
A study population may comprise children with a wide range of complex needs; therefore, it may be difficult to draw conclusions about specific interventions and impairments (e.g. child with autism using one type of intervention and another child with Downs Syndrome using another type of intervention). It is necessary to be able to identify the underlying features of effective intervention strategies from less effective strategies through an analysis of the process (e.g. effective techniques to work with families and resolve problems, types of materials and resources that are useful for families), which may contribute to a set of generic guiding principles for intervention design.
The human resource constraint in many low-and middle-income countries, often means a reliance of training of ‘unskilled personnel’ to undertake family visits. These need good training not only on the intervention for the child, but also around disability awareness and on reducing prejudices towards families who are considered to be unresponsive or uncaring towards children with disabilities. Adequate documentation of lessons learned from these training strategies is necessary.
The selection of outcomes requires careful consideration of the implications of using standardised tests and assessments developed in high income settings that may not be appropriate in different social, cultural and economic settings. Appropriate adaptation and reporting of reliability and validity of measures used is necessary.
More robust intervention studies are required. Most intervention studies have been pre and post evaluation designs, with only one randomized controlled trial. It is timely and necessary to seek opportunities for controlled experimental designs.
The cost of interventions should be evaluated as a component of research. Few studies have considered the formal systems in the settings in which they have been implemented. A
greater focus is necessary on how family and community-partnerships engage with the formal systems in order to provide information for sustainability and scaling up effective strategies. Such data will also help donor organisations to decide on what areas they should invest more money.
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Table 2: The scope of studies about caregivers of children with disabilities
ReferenceCountry
Description of Caregivers Objective Methodological Approach
Ambikile & Outwater (2012)64
Tanzania
Caregivers (parent or grandparent) of children with learning disabilities
To identify the challenges experiences by caregivers caring for children with learning disabilities
Qualitative
Azar & Badr (2010)65
Lebanese
Mothers and fathers of children with learning disabilities
To describe how mothers and fathers differ in their experience of stress, informal social support and coping
To determine the associations between informal social support, parental stress and coping?
To identify the predictors of coping of parents?
Quantitative
Bilgin & Kucuk (2010)66
Turkey
Mothers of children with autism
To explore and categorize the experiences of mothers caring for a child with autism.
Qualitative
Dhar (2009)67
India
Family members (parent or sibling) of children with developmental disabilities
To explore the experiences of living with a child with developmental disabilities
Qualitative
Geere et al (2012)68
Kenya
Caregivers of children with moderate-severe motor impairments
To explore the potential links between providing care for a child with moderate-severe motor impairments and the physical health of caregivers
Mixed Methods
John (2012)69
India
Mothers of children with learning disabilities
To describe the stress experienced by mothers, and the predictors.
To explore the challenges and strengths experienced by mothers
Mixed methods
Juneja et al(2012)70
India
Parents of children with developmental disabilities
To identify the problems parents faced in accessing services for children with developmental disabilities
Quantitative
Maloni et al (2010)71
Bangladesh
Mothers of children with disabilities
To explore the perceptions regarding disability, and caregiving experiences.
Qualitative
McConachie et al (2001)72
Bangladesh
Mothers of children with moderate-severe cerebral palsy following participation in an intervention trial.
To identify factors that might affect uptake of a Distance Training package to support care of children with cerebral palsy
Mixed Methods
McConkey & Samadi (2013)73
Iran
Parents of children with autism who had participated in a training programme (long term follow up)
To document any change pre and post training with respect to informal support
To assess whether parental well-being, coping and management had improved post training
To evaluate whether parents who remained in touch with other parents
Quantitative
31
from the training programme had better well-being indicators
Mirza et al (2009)74
Pakistan
Caregivers of children and young adults with learning disabilities
To explore pathways to formal care, barriers to receiving formal care, and experiences of those caring for persons with learning disabilities
Mixed Methods
Mobarak et al (2000)75
Bangladesh
Mothers of children with moderate-severe cerebral palsy following participation in an intervention trial.
To identify predictors of stress in mothers of children with cerebral palsy
Quantitative
Park et al (2010)76
Vietnam
Mothers of children with learning disabilities
To assess the social support among mothers of children with learning disabilities, and the impact of the social support
Quantitative
Samadi et al (2013)77
Iran
Parents of children with autism
To evaluate the impact of participation on a training programme on parental well-being
Mixed Methods
Samadi et al (2012)78
Iran
Parents of children with autism
To identify the information and support needs of parents of children with autism
Qualitative
Thuy & Berry (2013)79
Vietnam
Mothers of children with disabilities
To explore the relationship between mental health and social capital among mothers of children with disabilities, and to explore how social capital might be promoted to enhance their well-being
Quantitative
Yousafzai et al (2011)80
Pakistan
Mothers of children with disabilities
To explore the influences of children with disabilities on the daily lives of their mothers, and to describe the factors that influence the caregiving capacity of mothers.
Qualitative
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Box 3 Ways forward in intervention research for children with disabilities in low- and middle-income countries
Screening Linked to Intervention Integrated designs connecting screening with service are both ethically important and necessary in developing
services for children with disabilities. Partnership between formal services and caregivers in screening approaches provides an opportunity to develop
strategies that are contextually relevant, needed and feasible.
Whole Family Approach to Intervention Intervention content and delivery must not look at the child alone, but focus on a whole family approach. Identifying and further exploring supportive strategies for caregivers need to be evaluated (e.g. encouragement
of other family members to help with daily care, incorporation of a problem solving approach, opportunities to engage with other families in the same situation, information sharing, and exploration of coping strategies). The theories of change for these strategies need to be documented in research dissemination.
Intervention designs which depend on family involvement must measure parent’s willingness to change events or circumstances in their lives through formative research and intervention evaluation. Addressing questions such as whether the intervention will lead to more time for parents to do other things such as chores or earn income will be helpful in ‘hooks’ for the intervention success.
Training and supervision strategies for delivery agents must be evaluated. What are the critical skills and how can these skills be translated in to practice for effective intervention delivery (e.g. tailoring generic interventions for individual needs).
Evaluation Framework for Intervention The International Classification for Functioning, Disability and Health, the Capabilities Approach, the
Community-based Rehabilitation Approach and the United Nations Convention on the Rights of Persons with Disabilities provide frameworks for both intervention design and evaluation.
It is critical for intervention programmes to measure outcomes in children with disabilities across different domains of development, and to examine how these interventions may impact activity limitations, participation restrictions at the personal and environment level.
Broader intervention strategies need to think about how the interventions encompass broader skill sets that will enable children to become more independent and participate in their communities more. How does the training increase parents’ capacity to problem solve and ‘generalise’ skill sets to family daily routines?
Evaluations should have specific outcomes that measure outcomes of parents’ training with variability associated with parents’ knowledge, skills and performance of the techniques they were trained in as well as their performance of the techniques; against the complexity of the child’s impairment, functioning and behaviours.
The cost and cost benefits of interventions should be evaluated to enable programme implementers to make informed investment choices
Characteristics of interventions need to be identified from studies on a range of disabilities in order to develop guidelines for intervention development based on common features and distinct features for specific groups and contexts.
Collaborative Child Health and Development Partnerships Opportunities for collaboration on large scale child health interventions are needed to enable analysis of
inclusion, targeting and impact of mainstream interventions on children with disabilities. Capacity development for high quality services and research for children with disabilities should be
considered through partnerships with centres for health personnel (e.g. doctors, nurses, developmental therapists, physical therapists) both pre-service and in-service.
A case for research investment in disability research with funders needs to be leveraged. A starting point for the research community is to convene a research priority setting exercise using the ‘Child Health and Nutrition Research Initiative’ model (CHNRI, http://www.chnri.org/ ).
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