Ethics and research among persons with disabilities in long-term care.
In this article, I reveal the arguments used to gain ethics approval to do research among persons with disabilities in adult residential care in New Brunswick and the specific ways I planned to act in their best interests. I also discuss the unexpected dilemmas encountered in the field and my efforts to resolve them. These dilemmas included determining the capacity of the persons in care to assent to be interviewed, addressing the propensity for acquiescence, dealing with anonymity and confidentiality issues, finding the optimum contexts for interviews, preparing participants for when I would leave the field, negotiating full disclosure as the mother of an adult with disabilities in long-term care, and ensuring that no persons under the auspices of the Office of the Public Trustee in New Brunswick participated in this research. I conclude that specific efforts should continue to be made to include persons with disabilities in future research.
Department of Sociology, University of New Brunswick, Fredericton, New Brunswick, Canada. u2nmz@unb.ca
Barbara
B
Morrisey
D000328:Adult; D000368:Aged; D003219:Confidentiality / Q000523:psychology*; D003657:Decision Making; D006233:Persons with Disabilities / Q000523:psychology / Q000534:rehabilitation*; D032984:Ethics, Research; D005260:Female; D006302:Health Services Research / Q000379:methods*; D006801:Humans; D007406:Interview, Psychological; D008134:Long-Term Care / Q000941:ethics / Q000523:psychology*; D008297:Male; D008875:Middle Aged; D036301:Qualitative Research; D012112:Residential Facilities; D018570:Risk Assessment; D014342:Truth Disclosure / Q000941:ethics*; D055815:Young Adult