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Research Challenges with Children with Disabilities: Ethical Considerations and Innovative Approaches

This publication addresses the complex issues that arise when conducting research with children with disabilities. It covers topics such as theoretical frameworks, ethical principles, participative research approaches, models of disability, and the importance of including children's voices in the research process. The text explores the ethical concerns related to interactions with adults, obtaining informed consent from children, minimizing intrusion, and ensuring inclusivity. Key supports such as peer review, advisory groups, and ethics committees are highlighted, emphasizing the importance of ethical research practices. The text also delves into practical considerations when initiating research, selecting participants, and managing data collection, with a focus on confidentiality, validity, and participant autonomy. It stresses the need for innovative and empowering research approaches that respect the rights and perspectives of children with disabilities.

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Research Challenges with Children with Disabilities: Ethical Considerations and Innovative Approaches

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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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