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

在资源匮乏的环境中，很少有服务支持神经性残疾儿童及其家庭，例如撒哈拉以南非洲地区的服务。父母和照顾者报告说，影响孩子和家庭生活质量的两个主要特征是孩子的行为和与孩子沟通的困难。最近对文献的回顾表明，父母干预可能是改善沟通和行为的最可接受和最可行的方式。特别是，为残疾儿童的父母制定的Steps Stones育儿方案被认为是一种适当的干预措施，因为它不需要专门的治疗师，不涉及数小时的治疗，并赋予父母和照顾者权力。该方案已在23个以上的国家使用，证明在改善残疾儿童的行为和沟通方面是有效的；但尚未在资源匮乏的环境中进行测试。世界卫生组织也认识到了这些干预措施，并通过针对患有发育障碍的儿童的心理健康治疗差距干预措施来推广这些干预措施。此外，世卫组织还制定了一种以家长为基础的干预措施，即父母技能培训，以改善沟通和行为，但这种干预措施尚未在现场进行测试。这笔赠款的目的是研究实施两种干预措施的文化接受度和可行性，即通过父母或照顾者提供的Step Stones计划和专利技能培训，以改善神经残疾儿童的沟通、行为和生活质量。特别是，我们将确定家长干预管理的障碍。此外，我们还将检查这些工具的可靠性、有效性和响应性，以衡量这些环境中的行为、沟通、育儿、压力和生活质量。该项目的这些数据将被用于开发干预措施，并在随机对照试验中进行测试。测试这些干预措施可能会为残疾儿童及其家人提供一些支持。这些数据还将反馈给支持肯尼亚残疾儿童的非政府组织--卫生、教育和社会服务部。

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.