A home‐based intervention using augmentative and alternative communication (<scp>AAC</scp>) techniques in rural <scp>K</scp>enya: what are the caregivers' experiences?

Gona, Joseph; Newton, Charles R.; Hartley, Sally; Bunning, Karen

doi:10.1111/cch.12031

Cited by 33 publications

(37 citation statements)

References 32 publications

(56 reference statements)

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“…One South African study observed that there were relatively few barriers to participating in ASD research and suggested that most of these barriers were poverty-related [42]. Additionally, a few very-small-scale studies (with participants ranging from 1 to 7) have looked at potential intervention strategies to enhance outcomes among children with ASD [59, 60]. For instance, Travis and Geiger investigated the efficacy of the Picture Exchange Communication System (PECS) to improve communication skills in two South African children with ASD [59].…”

Section: Resultsmentioning

confidence: 99%

A Systematic Review of Research on Autism Spectrum Disorders in Sub-Saharan Africa

Abubakar

Ssewanyana

Newton

2016

Behavioural Neurology

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The burden of autism spectrum disorders (ASDs) in sub-Saharan Africa (SSA) is not well known. We carried out a systematic review of the literature to identify published work from SSA. We have systematically searched four databases, namely, Medline, PsycINFO, CINAHL, and Child Development & Adolescent Studies, through EBSCO and identified studies from across SSA. Based on predefined inclusion criteria, 47 studies were included in this review. Most of the identified studies (74%) were conducted in only 2 African countries, that is, South Africa and Nigeria. Additionally, most of these studies (83%) were carried out in the last decade. These studies had four major themes: development of measurement tools of ASD in Africa, examining the prevalence of ASD, identifying risk factors and risk markers, and examining psychosocial issues. We identified only a single population level study aimed at documenting the prevalence of ASD and could not identify a single case-control study aimed at examining a comprehensive set of potential risk factors. All intervention studies were based on very small sample sizes. Put together, our findings suggest that current evidence base is too scanty to provide the required information to plan adequately for effective intervention strategies for children with ASD in Africa.

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Section: Resultsmentioning

confidence: 99%

A Systematic Review of Research on Autism Spectrum Disorders in Sub-Saharan Africa

Abubakar

Ssewanyana

Newton

2016

Behavioural Neurology

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“…The few studies which have included caregiver outcomes for home and community-based interventions, have generally focussed on one or two measures of improvements in maternal knowledge and stress, and parent satisfaction with services [43] [20] [44–46]. In our study, the reported improvement in knowledge and confidence in caring for their child is encouraging; and arguably, more importantly, the emphasis on problem solving and caregiver empowerment, within a support group setting, has the potential to offer a more sustainable mechanism for improving long term outcomes for the child and family.…”

Section: Discussionmentioning

confidence: 99%

Evaluating the impact of a community-based parent training programme for children with cerebral palsy in Ghana

et al. 2018

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BackgroundIn low and middle-income settings, where access to support and rehabilitation services for children with disabilities are often lacking, the evidence base for community initiatives is limited. This study aimed to explore the impact of a community-based training programme for caregivers of children with cerebral palsy in Ghana.MethodsA pre and post evaluation of an 11-month participatory training programme (“Getting to Know Cerebral Palsy”) offered through a parent group model, was conducted. Eight community groups, consisting of a total of 75 caregivers and their children with cerebral palsy (aged 18 months-12 years), were enrolled from 8 districts across Ghana. Caregivers were interviewed at baseline, and again at 2 months after the completion of the programme, to assess: quality of life (PedsQL™ Family Impact Module); knowledge about their child’s condition; child health indicators; feeding practices. Severity of cerebral palsy, reported illness, and anthropometric measurements were also assessed.ResultsOf the child-caregiver pairs, 64 (84%) were included in final analysis. There were significant improvements in caregiver quality of life score (QoL) (median total QoL 12.5 at baseline to 51.4 at endline, P<0.001). Caregivers reported significant improvements in knowledge and confidence in caring for their child (p<0.001), in some aspects of child feeding practices (p<0.001) and in their child’s physical and emotional heath (p< 0.001). Actual frequency of reported serious illness over 12-months remained high (67%) among children, however, a small reduction in recent illness episodes (past 2 weeks) was seen (64% to 50% p < 0.05). Malnutrition was common at both time points; 63% and 65% of children were classified as underweight at baseline and endline respectively (p = 0.5).ConclusionChildren with cerebral palsy have complex care and support needs which in low and middle-income settings need to be met by their family. This study demonstrates that a participatory training, delivered through the establishment of a local support group, with an emphasis on caregiver empowerment, resulted in improved caregiver QoL. Despite less effect on effect on child health and no clear effect on nutritional status, this alone is an important outcome. Whilst further development of these programmes would be helpful, and is underway, there is clear need for wider scale-up of an intervention which provides support to families.

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“…58–63 The studies, from Bangladesh,58 61 India,62 Kenya,59 Malawi60 and Vietnam63 are diverse with respect to disability and intervention content (eg, 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.…”

Section: Interventions For Cwd: Impact On Children and Families And Imentioning

confidence: 99%

“…There is only one randomised controlled trial,61 and only two studies include a control comparison in the analysis 61 63. Two of the studies include a premeasure and postmeasure 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.…”

Section: Interventions For Cwd: Impact On Children and Families And Imentioning

confidence: 99%

“…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 well-being or perception of support. However, little information is available on the reliability and validity constructs of the assessment tools used for these populations.…”

Section: Interventions For Cwd: Impact On Children and Families And Imentioning

confidence: 99%

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Moving beyond prevalence studies: screening and interventions for children with disabilities in low-income and middle-income countries

Yousafzai

Lynch

Gladstone

2014

Archives of Disease in Childhood

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Research understanding the lives of children with disabilities in low-income 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 realisation of rights for children with disabilities and inclusive early childhood development.

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A home‐based intervention using augmentative and alternative communication (AAC) techniques in rural Kenya: what are the caregivers' experiences?

Abstract: Background Caring for a child with complex communication needs associated with a

Cited by 33 publications

References 32 publications

A Systematic Review of Research on Autism Spectrum Disorders in Sub-Saharan Africa

A Systematic Review of Research on Autism Spectrum Disorders in Sub-Saharan Africa

Evaluating the impact of a community-based parent training programme for children with cerebral palsy in Ghana

Moving beyond prevalence studies: screening and interventions for children with disabilities in low-income and middle-income countries

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