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Rapid Responses: Rapid Responses published:
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Parents appreciate honesty from those they are forced to trust
- Deborah Millicent Henshall (6 July 1998)
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Re: Parents appreciate honesty - begs further questions about the research.
- Brian Morgan (10 July 1998)
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Deborah Millicent Henshall, Carer Home
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Dear CS: how refreshing to read your study and how nice for you to consider a parent's point of view, a rare moment when dealing with researchers in my experience. I agree with the majority of what is concluded in the publication and would add that, to many parents, honesty is appreciated even if it is distressing. I speak from the heart; two of my premature children were used in a research project without my knowledge or understanding that the treatment they would recieve was only experimental and not the best ,proven, safe and effective treatment we had been led to believe it was. My first child died as a result of the "complications" of the technique and the second acquired cerebral palsy (double hemi parisis)due to a slow suffocation secondary to impaired cerebral blood flow and a small bleed to the top of the left ventricle. She developed PVL. I found out by accident 4 years later that the treatment they had recieved for their RDS ,CNEP, had been a trial and was discontinued after 4 years as it had been proven to have serious side effects considered as secondary parameters . These were that CNEP was associated with a higher incidence of mortality, morbidity , cerebral ultrasound abnormalities, Renal failure, NEC, PDA and pneumothoraces. Needless to say this information was not offered to any of the participants representitives and although it was distressing it is generally felt by all the mothers who have since contacted me that it was indeed common curtesy to inform parents of results even when they are negative. Those parents do have full responsibility to the children and have to know when mistakes are made to avoid repitition and retribution. True there is a risk to those researchers whom stand as guarantors for the study when things go wrong for legal implications but these are justified and provision should be made to compensate those that are harmed as a direct result of unforseen technicalities that give rise to injury or death. It is unethical when things go wrong for researchers to move on without a second thought to how that child and it`s family will manage with a very reduced quality of life in total dispair and never ending struggle. The world needs research and support from parents willing to be "the first" in order to advance in medicine to the good of humanity. If it is executed bearing the patients best interest in mind then it is justifiable and valid. Thankyou for your obvious forsight , I wish there were more like you and your colleagues who realise that only honest research gives worthy and valuable clinical information for evidence based good practice. |
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Brian Morgan, Freelance Journalist Cardiff, UK
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Mrs Henshall's account of the research trial involving her children is disturbing, and if substantiated merits urgent investigation by the authorities. Questions that need addressing initially include these- how did Mrs Henshall discover there had been a research trial if she was not told at the time? Was this trial written up and published and if so where? Perhaps Mrs henshall could advise us through your response section. Brian Morgan Freelance Journalist 4 Rawden Place Riverside Cardiff CF1 8LF 01222 222656 fax 01222 221551 |
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