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Please Please

​Request to researchers

The “Discovery” of Siblings by Kathryn Edmundson (Source: Mental Retardation, Volume 23 No.2, April, 1985, 49-51pps, American Association on Mental Deficiency) published in the United States in 1985. In the paper "American Association on Mental Retardation", there is the following description.

   Another development is siblings' determination to change their relationships with professionals. Siblings' resentment and anger at professionals is striking. It is related to what siblings perceive as professionals' ignorance – both in the sense of not seeing, and in not understanding – of siblings 'needs; and to siblings' frustration at what they perceive as professionals' handicap-as-illness mentality. Siblings know the problem of handicap can't be fixed or cured. How professionals listen to and help siblings cope over the long term is a major sibling concern. Further, although there is a need of humanistic research on siblings' need and concerns, real, live siblings resent some professionals' rush into this research area and their “use” of siblings' situations and feelings.


Another development is that siblings are determined to change their relationships with professionals. The resentment and anger of siblings towards experts is remarkable. This has to do with what the siblings perceive as ignorance of the expert-in terms of not seeing or understanding the needs of the sibling-and also the obstacles of the expert. It is related to the sibling's frustration with the idea of being ill. Siblings know that problems caused by disabilities cannot be fixed or cured. How can an expert (who sees a disability as an illness) listen to and help his siblings when dealing with problems over the long term is a major concern for his siblings? In addition, human research is needed on what the siblings need and worry about, but some experts have broke into this area of research and are taking advantage of their siblings' positions and feelings. The real siblings are indignant at that.

The reason why I want to clarify the research ethics at the "sibling support promotion society" is to focus on "siblings", and along with the practice of sibling support, "sibling" research and "siblings" We are grateful for the prosperity of "support" research, but we want to reduce the number of specialists who "use the position and feelings of our siblings" as much as possible. Therefore, I would like to first consider informed consent.
Also, if the subject is an adult, it is not impossible to tell the researcher about the recorded conversation, such as "Please stop the tape here", but it seems to be extremely difficult for children. .. Therefore, we would like to collect and consider information on the ethics of research on children as well as information on informed consent.

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