Ethics Governance
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| Article - Abstract. To view full article click on the article title. | |
eMJA: Does research into sensitive areas do harm? Experiences of research participation after a child's diagnosis with Ewing's sarcoma Does research into sensitive areas do harm? Experiences of research participation after a child's diagnosis with Ewing's sarcoma. Objective: To investigate family members' experiences of involvement in a previous study (conducted August 1995 to June 1997) following their child's diagnosis with Ewing's sarcoma. Design: Retrospective survey, conducted between 1 November and 30 November 1997, using a postal questionnaire. Participants: Eighty-one of 97 families who had previously completed an in-depth interview as part of a national case–control study of Ewing's sarcoma. Main outcome measures: Participants' views on how participation in the previous study had affected them and what motivated them to participate. Results: Most study participants indicated that taking part in the previous study had been a positive experience. Most (n = 79 [97.5%]) believed their involvement would benefit others and were glad to have participated, despite expecting and finding some parts of the interview to be painful. Parents whose child was still alive at the time of the interview recalled participation as more painful than those whose child had died before the interview. Full Article: http://www.mja.com.au/public/issues/177_09_041102/sco10203_fm.html |
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2006 Ethics-Governance.com |
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