Lanie Stockman The voices of Pacific children with disabilities


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  • 1. Gap in knowledge:We don’t know what children with disabilities in the Pacific identify as important in their life or areas for change, and we know nothing about their human rights. This is because:-has not been a priority area-Lack of research practitioner knowledge on disability and inclusive tools- Children with disabilities are frequently excluded from mainstream children’s research –and children with disabilities are hidden from view in the Pacific‘experts’ have traditionally held the space in speaking for what children with disabilities in development need, want and will benefit from.The UNICEF Pacific 2010 MTR report: Pacific Children with Disabilities acknowledges some of the difficulties the team faced in considering whether to interview children: Lack of time to build up rapport and trust of the children, caregivers and teachers Having methods that address communication difficulties owing to disabilities and languages Given these factors the research team found it difficult to speak meaningfully with children without appearing tokenistic2. Understanding more about the priorities, concerns and dreams of children with disabilities in the Pacific will enable the Government, other service providers and donors will be able to improve how they work. Research will be underpinned by 3 core questions:What is important to you in your life? Why? Or what do you like and why? What are your hopes and dreams for the future? Why?What would make your life better or happier? Why?
  • Partnership approach: SC (skilled in working with children) and DPOs (skilled in working with people with disabilites)Co-researcher: locals that have a good understanding of context and use local language, more effectiveRights based/strengths based: Draws upon, respects and promotes human rights of children with disabilities. Strengths based approach acknowledges children’s attributes and skills and promotes questioning that safeguards children –focusing on what they can change in their life –rather than needs, thereby avoiding setting up expectations.Context: this research is sensitive to context, cultural understandings and beliefs around disability along with relationship building techniques and participatory tools. All methods will be culturally sensitive, translated into local language and useable to the researchers and trialed with children to ensure they are relevant. These four aspects continue right throughout the research and in the development of method as we will discuss now..
  • Ethics: process as per standard requirements –universityDeveloping principles for researchers to draw upon and practice, based on SC practice standards of child participation which includes standards such as children participate voluntarily and that activities are child friendly (ie: resources etc adapted, different forms of expression are encouraged and adults are sensitised to the value of children’s participation. Consent: Development of inclusive tools to help ensure consent is fully informed and includes complexities such as limited confidentiality that are explained in ways that are as straightforward as possible, including translation in national languages. Drew upon tools used in literature that was suitable to children with disabilities.
  • Description of Washington city group tool – which is questionnaire tool used to identify people who have difficulty with functional activities such as walking, remembering, seeing hearing.During the week-long research training partners adapted this to suit the Vanuatu context, beginning with identifying terms related to function in Bislama.Cultural context was discussed in detail with DPO leaders in both countries.-rationale against use of more lengthy assessments –not the purpose, may not be culturally suitable , want to focus on strenghts etc..-Video of discussion of cultural aspects /understandings of disability
  • One of the purposes of this research is to trial a variety of tools to communicate with children, both to ask the research questions and to better understand the types of tools themselves and the appropriateness of the tools depending on the individual child’s unique abilities and communication methods. One of the outcomes of the research is the development, use and refinement of data collection tools and methods suitable for self-report of children with disabilities with the hope of these tools being applied to further research and in development practice.Drawing on the existing literature, we have developed a register of tools that we began to trial with our team in Vanuatu. This included adapting one of the tools – the photo library – for use by children who are blind as can be seen in this photo where Willie is using a ‘story in a bag’ – everyday objects that can be used to prompt discussion according to the 3 key research questions.
  • In the researcher training we trialled working with 2 methods that we have drawn on from the literature review to ask the 3 research questions:Picture librarya picture library tool has been found to be of value in assisting people with disabilities to identify areas that were significant to them. In Prain’s research, a picture library covered pictures according to each life domain mentioned in the CRPD for example, spiritual life. DollsThe use of a rag doll has been used with pre-school children with and without disabilities as a participatory method. Gray and Winter report that this method worked with children with a range of impairments.
  • Ongoing support to researchers to develop skills and try new methods. EG; in Vanuatu we are working with a core group of researchers, working with a support team of people from VSDP and DPA who will work on aspects of the research from time to time.We expect the research outputs to include reports on:Data collection methods/tools for self-reportEthical issues and strategies for self report Recommended actions from findings: policy and design and delivery of programs
  • Lanie Stockman The voices of Pacific children with disabilities

    1. 1. Voices of Pacific children with disabilities: overview
    2. 2. What’s the research about and why is it important  Current gap in knowledge  Gain in knowledge will have practical implications for government, services and donors.  Example: Development of disability inclusive participatory tools can be replicated.
    3. 3. Approach • Partnerships • Co-researchers • Rights-based, strengths-based • Contextual
    4. 4. Research principles  Ethics  Consent  Child protection code  UNCRC, UNCRPD
    5. 5. Identifying disability  WCG6 - adapted and translated
    6. 6. Communication tools
    7. 7. Communication tools  Description of tools, adaption of tools and new method.  Visual and storytelling tools: photo library and doll
    8. 8. Where to from here…  Research plan: trialing and developing tools, and develop resources that can be replicated  Collect and share data about what’s important to children with disabilities.