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ISSUES IN RESEARCH WITH CHILDREN WITH DISABILITIES. Jean Whyte The Children’s Research Centre, TCD, For The National Disability Authority. ISSUES. Elements to be clarified before initiating a project Elements within the research process which give rise to difficulties.

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  1. ISSUES IN RESEARCH WITH CHILDREN WITH DISABILITIES Jean Whyte The Children’s Research Centre, TCD, For The National Disability Authority

  2. ISSUES • Elements to be clarified before initiating a project • Elements within the research process which give rise to difficulties

  3. Issues to clarify before initiating project • Theoretical standpoint • Constructions of childhood • Models of disability • Regard for children with disabilities • Approach to research

  4. Constructions of childhood • These vary in space and time • In Ireland up to 1960, NB socialization in line with adult-defined goals • 1960-90 attention to needs of children innocence and vulnerability stressed • 1990 + heightening awareness of child care issues; more recognition of rights of children

  5. Children’s rights(UN Convention,1989 ) • Survival, development and protection • Freedom of expression • Religion • Conscience • Association • Information • Physical integrity • Participation in decisions concerning them

  6. Child as participant rather than subject/object • Knowledge gains from perspectives of children • Recognition of diversity of children’s experiences

  7. Models of disability • Disability as a positive trait • Medical model • Social Model • International Classification of Function

  8. Children with disabilities • Need for protection vs. right to autonomy • Strengths not always recognized or nurtured

  9. Research with children with disabilities • Their voices absent • Need for qualitative research • Need also for quantitative research

  10. New approaches to research • Participative • Empowering • Emancipatory • Guidelines for inclusion (NDA,2002) • NB not blanket inclusion

  11. Issues which may arise in the course of the research • A. Initiating the research • B. Participants • C. The Researchers • D. The data • E. The outcomes

  12. Core principles • Beneficence • Non-maleficence • Autonomy • Fidelity • Inclusivity

  13. Ethical concerns • Adults • respect in interactions • in the tasks set • in treatment of information • Researchers • Competent, seeking support when necessary • Scientific responsibility and social responsibility

  14. Ethical concerns • Children • Informed valid consent and how obtained • Inclusion in decision-making • No unnecessary research • Minimal intrusion

  15. Key supports • Peer Review • Advisory Group • Ethics Committee • ‘the application of a system of moral principles to prevent harming or wronging others, to promote the good, to be respectful, to be fair’ (Sieber, 1993, p. 14)

  16. A. Initiating the Research • Theoretical perspectives • Methodological principles • Funding

  17. A. Initiating the research I) Theoretical perspectives • Constructions of childhood and disability • Theories of learning

  18. A. Initiating the researchii) Methodological principles • Scale and type of research project • Quantitative pros and cons • Measurement issues • Qualitative pros and cons

  19. A. Initiating the researchiii) Funding • Realistic budgeting • Input by funding agency • Agreement re aims • Link with needs of children with disabilities

  20. B. Participants • Considerations re child’s competence • Status of the child in the research context • Access and consent

  21. B. ParticipantsI) Considerations re child’s competence • Social and communicative competence affected by a number of factors • Issue around extent of facilitation and supports required to enable participation • Issue around maximizing self-esteem and self-confidence

  22. B. Participantsii) The status of the child • How child is viewed by researcher • Degree of participation in research process • How power relationship is addressed • How children construe the research process • How respect is shown for the child’s views

  23. B. Participantsiii) Access and consent • Identifying appropriate gatekeepers • Accessing those not in receipt of services • Preparing for informed and voluntary consent - appropriate materials etc • Confidentiality and anonymity • Rights of children and of parents, guardians

  24. C. The researchers • Knowledge • Communicative competence • Awareness of language • Experience and access to support • Skills- augmentative and alternative communication; adapting tools • Employing proxies

  25. D. Issues in data collection and management - I • Selection of data collection methods - once-off, multiple data points, repeated or adapted for maturation? Triangulation • Space and time • Location • Timing of sessions • Time schedule of project

  26. D. Issues in data collection and management - 2 • Confidentiality • Anonymity • Drawing attention to problems • Recording sensitive information • Privacy and child protection

  27. D. Issues in data collection and management - 3 • Reliability • Validity • Suggestibility • Compliance • Falsehoods

  28. E. Outcomes of the research • NB Finding ways to disseminate findings • To participating children, their parents, teachers etc • Discussing possible implications with service providers and policy makers • Sharing with other professionals • NB Ownership of data, access and future use

  29. Conclusions • NB Supports for researcher • Reference group • Big task - but research vital • Potential in Ireland • Hope for progress

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