Parenteral interventions to support families of children with neurodisability in low resource settings

Lead Research Organisation: University of Oxford
Department Name: Psychiatry

Abstract

There are few services to support children with neurological disabilities and their families in resource poor settings, such as those found in sub-Saharan Africa. The parents and carers report that the two main features that impair their child's and family's quality of life are difficulties with their child's behaviour and communicating with the child. Recent reviews of the literature have supported that parent interventions may be the most acceptable and feasible way to improve communication and behaviour. In particular, the Stepping Stones parenting programme, which has been developed for parents of children with disabilities was suggested as an appropriate intervention, since it does not require specialised therapists, does not involve hours of therapy and empowers the parents and carers. This programme has been used in over 23 countries, shown to be effective in improving behaviour and communication in children with disabilities; but has not been tested in low-resource settings. The World Health Organization has also recognised these interventions, and promotes them through the mental health treatment gap interventions for children with developmental disorders. In addition the WHO has developed a a parent based intervention i.e. Parent Skills Training to improve communication and behaviour, but this intervention has not been tested in the field.

The objectives of this grant are to examine the cultural acceptability and feasibility of administering two interventions i.e. Stepping Stones Programme and Patent Skills Training delivered through parents or carers to improve the communication, behaviour and quality of life of children with neurological disabilities. In particular we will identify the barriers to the administration of a parent intervention. In addition we will examine the reliability, validity and responsiveness of tools to measure behaviour, communication, parenting, stress and quality of life in these settings.

This data of this project will be used to develop an intervention to be tested in a randomised control trial. Testing the interventions are likely to provide some support to the children with disabilities and their families. The data will also be fed back to non-government organisations, the Ministrys of Health, Education and Social Services who support children with disabilities in Kenya.

Technical Summary

With the reduction in childhood survival in Africa, many more children are living with neurological disabilities. There are few services to support these children or their families in resource poor settings, such as in sub-Saharan Africa, since there are few therapists. The parents and carers report that the two main features that impair their child's and family's quality of life are difficulties with behaviour and communication. Recent reviews of the literature have supported that parent interventions may be the most acceptable and feasible way to improve communication and behaviour. In particular, the Stepping Stones parenting programme, which has been developed for parents of children with disabilities was suggested as an appropriate intervention, since it does not require specialised therapists, does not involve hours of therapy and empowers the parents and carers. This programme has been used in over 23 countries, shown to be effective in improving behaviour and communication; but has not been tested in low-resource settings. The World Health Organization has also recognised these interventions, and promotes them through the mental health treatment gap interventions for children with developmental disorders. In addition the WHO has developed a a parent based intervention i.e. Parent Skills Training to improve communication and behaviour, but this intervention has not been tested in the field.

We plan to examine the cultural acceptability and feasibility of administering two interventions i.e. Stepping Stones Programme and Patent Skills Training delivered through parents or carers to improve the communication, behaviour and quality of life of children with neurological disabilities. These studies will be conducted in two poor areas of Kenya ie informal settlements in Nairobi and rural Kilifi.

Planned Impact

This preliminary research will directly affect the children with disabilities and their families, provide training to a few facilitators/practitioners, and data to the Kenyan Ministry's of Health, Education and Social Services. In addition the data collected will be fed back to the Non-Governmental Organisations supporting children and their families with disabilities, the World Health Organization and Triple-P International.

The families involved in stage III, will benefit from further knowledge about strategies to help improve behaviour and communication in their children with disabilities. One of the tools (Stepping Stones Triple-P) that is being studied has a strong evidence base, albeit in high income countries, but there is no data from resource poor areas. The other intervention (Parenting Skills Training) has a strong theoretical basis and is being developed by the WHO, but at present there is no published literature on it. Both of these interventions are likely to improve the quality of life of the affected families.
The people chosen as facilitators and practitioners will be from the local communities and the training will enhance their skills in supporting children with disabilities.

The information on the challenges encountered by carers and families of children with disabilities will be fed back to the NGO organisations, local departments of Health, Education and Social Services. This data may be useful for local planning, but we will ensure that is sent to the Kenyan Ministry's of Health, Education and Social Services.

The properties of the tools used to measure tools to measure behaviour, communication, parenting and family quality of life (QOL) will be published in Open Access international scientific journals, and thus be available to academics and the general public.

The primary goal of this Development grant is to identify a parental intervention to improve behaviour and communication in children with disabilities that can be tested in a rigorous randomised clinical trial. The results of this trial are likely to a significant impact on children with disabilities and their families, living in resource poor areas. If the intervention is shown to be cost-effective, then it will be discussed with the Kenyan Ministry's of Health, Education and Social Services, and international organisations such as the WHO, Unicef and Plan International.

Publications

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Title Database of Children with Neurodevelopmental Disorders in Kilifi, Kenya 
Description We have established a database of all children with Neurodevelopmental Disorders, who are seen in the Developmental clinics at Kilifi County Hospital, identified through previous surveys of neurological impairment, epilepsy or neurodevelopmental disorders in the Kilifi Demographic System and those children with autism identified in Kilifi and Mombasa. 
Type Of Material Database/Collection of data 
Provided To Others? No  
Impact This database has allowed us to identify families who may benefit from a parent skills training programme. 
 
Description Collaboaration with Dr Rosa Hoekstra Institute of Psychiatry, Kings College London. 
Organisation King's College London
Department Institute of Psychiatry, Psychology & Neuroscience
Country United Kingdom 
Sector Academic/University 
PI Contribution We have held face-to-face and Skype meetings with Dr Rosa Hoekstra to work on the Parenting Skills Training (PST) intervention in collaboration with colleagues at Addis Ababa University where she leads a range of autism studies in Ethiopia.
Collaborator Contribution Dr Hoeskstra has shared her development of the WHO PST, in particular the cultural modifications that she has had to conduct.
Impact Sharing material on the PST. This has involved psychologists, ehtnic researchers and paediatricians.
Start Year 2017
 
Description Parent Skills Training in low resource settings 
Organisation World Health Organization (WHO)
Department Maternal, Newborn, Child and Adolescent Health
Country Switzerland 
Sector Public 
PI Contribution We have started a collaboration with Chiaria Sevilla at the World Health Organization to collect data on the WHO parent skills training tool in Kenya. This tool will be used in the final trial design.
Collaborator Contribution Dr Sevilla has provided access to the WHO parent skills training programme and also will provide trainers in the programme.
Impact This is a collaboration between psychologists, child and adolescent psychiatrists and neurologists.
Start Year 2016
 
Description Meeting with Stakeholders in Nairobi 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Supporters
Results and Impact We held a meeting with the major stakeholders, which included national organisations that look after children with neurodevelopmental disorders (in particular Autism Society of Kenya, Cerebral Palsy Society of Kenya, Association for Physical Disability in Kenya), the Ministry of Health, a parents of children with cerebral palsy and members of the African Population Health Research Centre.
Year(s) Of Engagement Activity 2016
 
Description Meeting with different partners working with children with disability 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Supporters
Results and Impact This was a meeting intended to agree on the some of the activities that we can use to raise awareness on needs of children with disability.
Year(s) Of Engagement Activity 2018
 
Description Stakeholder workshops 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Around 40 participants attend 2 workshops where we discussed and agreed on the key targets for interventions for families with children with neurodisability
Year(s) Of Engagement Activity 2016