Hi everyone
I needed to have ethical approval for research on Student's mental health
and disclosure. I agree mostly with the advice Rea has explained below.
I didn't have any problems in gaining ethical approval.
I did however, have to change the way I wanted to approach the study. I
wanted to allow the 'subjects' to maintain complete anonimity which meant
I really didn't want it to be neccessary to have a person sign a consent
form which discloses their name. I would also need to post it which
discloses their address.
I imgagined trying to explain this on an ethics application and decided that
a compromise was best. I ended up using consent forms but was careful
how it was done.
The use of narrative never really concerned me (perhaps thats just
naivety) I did however write a large amount of detail when talking about
the capability of subjects giving informed consent; the (sometimes)
cathartic nature of writing narratives; pointing out that the research
process does have potential to cause people to become emotionally
distressed but this is natural considering that people are disclosing
emotional aspects of their lives (rather than it being my method that would
cause such distress); and that I had given thought to referral agencies
should someone become distressed.
Mental illness is different to intellectual disability obviously, but I am not
sure that the ethics committee will be as knowlegable of certain issues as
we are. It seemed from my experience that they were happy to see me
explain with caution and sensitivity, the strategies I would use to maintain
the well-being of the 'subjects'. Thats just my impression. The issue of
narrative was never an issue with the people I sought advice from. I did
not consult any scientists or other positivists though.
> Hi Alex
> I too am currently grappling with how to approach the ethics
> committee here regarding my proposed research exploring narrative
> method use with individuals who are labeled as having a severe or
> profound intellectual disability for the purposes of hearing their
> stories, with particular emphasis on meaning making and self-
> developed idenitites.
>
> From the literature I have consulted to date there is no tangible 'self'
> representeations of individuals with severe intellectual disability.
> However I have found pertinent discussion of the ethical constraints
> and necessary considerations when considering any form of
> participatory reserach with this group, see especially Kirsten Stalker
> (1998) and Swain, Heyman & Gillman (1998). (I am sure you would
> have sourced these papers, both published in Disabilty & Society).
>
> But to the point at hand: ethical clearance. The strongest advice I
> received from my school when I broached my dilemmas reagrding
> the exploration of narrative methods with this group during a recent
> seminar series was:
> - don't position myself to oppositional to traditional reseach protocols
> - rather argue for subtleties and understanding
> - therefore I was encouraged to make my argument within the
> ethical processes. That is, not to focus on the somewhat limiting and
> exclusionary positions of informed consent and competence
> generally, but rather elaborate how these concepts are
> operationalised in the process I intend to undertake.
> - I was also encouraged to to be careful to think through
> relationships & intimacy, access to people and safety versus
> exploitation, and be sure to think carefully about my assumptions
> (based on prior relationships with people so labeled, and my belief
> that telling stories is 'good') as those on the ethics committee
> generally will not have personal experience of this.
>
> Finally, I was urged to be specific, ie spell out how an individual
> might indicate their willingness to proceed, etc.
>
> While these guidelines might seem overly simplistic, they were a
> useful re-starting point when gaining ethical clearance was
> appearing more and more futile. I hope what I have shared assists
> you. I am also keen to hear from you about how things went and
> what thinking you have undertaken both prior and since the meeting.
> This reserach is profoundly important - we must find ways to
> uncover more of the ordinary aspects of the lives of individuals
> labeled as having a severe or profound intellectual disability, and
> reframing ethical constraints is a necessary step.
>
> all the best
> Rea
>
> Rea Dennis
> Post-graduate student
> School of Social Work and Social Policy
> The University of Queensland
> Brisbane Australia
>
> +61 7 3365 2634
> +61 7 3365 1788 (fax)
> 0416 186 557
Best regards
Laurence Bathurst
School of Occupation and Leisure Sciences
Faculty of Health Sciences
University of Sydney
P.O. Box 170
Lidcombe NSW 2141
Australia
Phone: (62 1) 9351 9509
Fax: (62 1) 9351 9166
e-mail: [log in to unmask]
Please visit the School's web site at
http://www.ot.cchs.usyd.edu.au
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Not one shred of evidence supports the notion that life is serious
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