Ethics of the relationship between the researcher and the informant in observational study of children with developmental disabilities - theoretical considerations
Department of Nursing Science University of Turku Finland,
Department of Nursing Science University of Turku Turku, Finland
This presentation reviews the ethical questions of the relationship between the researcher and the informant in observational study of children with developmental disabilities. Ethically sound methodological solutions are discussed.
The most important ethical principles of researcher are principles of beneficence and non-maleficence. However, it is not easy to put into practice or even define those principles in observation studies of children with developmental disabilities. Every human being's right to freedom, safety, privacy and equality in treatment must be taken into consideration when these principles are defined and practiced. The researcher must also pay attention to the child's level of development. Basically ethical behaviour of a researcher is about a respecting attitude towards the informant. Therefore, the relationship between the researcher and the informant is an important subject of examination in observational research.
The relationship between an adult and a child is usually imbalanced power relationship at a basis. In an observation study children must be treated like children, but not in a way that adults normally do treat children. Ordinarily adults are the ones that give information and permissions on behalf of the child, but actually in observation study the child is the informant, who should be asked for permission. Carrying out an observational study is always somehow intrusive, thus the child's assent is important. Even a small child's participation in a research should be voluntary. The child's refusal should be respected, even if his/her reaction would not seem as rational behaviour. It is possible to get an assent from a child in pre-linguistic level with non-verbal methods. Getting an assent is not a one-time performance, but should happen continuously during the observation period. The researcher should regard the child with respect during the whole observation period. The child with developmental disabilities needs preparation for the ending of the research relationship, because changes are difficult and because the end of the relationship might cause sorrow to the child. In conclusion, an observational study of children with developmental disabilities requires of researcher as follows: experience of working with children, sensitivity of perceiving child's reactions and thorough examination of own attitudes.