ICW: Guidelines on ethical participatory research with HIV positive women

[Guest guest]

Draft guidelines on ethical participatory research with HIV positive

women By:ICW on:6 August 2003

ICW believes that, insofar as it is possible, all HIV positive women

should be offered meaningful opportunities to be actively involved in

all medical, socio-economic or other research which is undertaken

concerning women living with the virus, regardless of our age,

religion, culture, socio-economic background, parental status, length

of knowledge of HIV positive status, or sexuality.

We believe that, as women living with this virus, we are uniquely

placed to contribute our knowledge, skills and experience to all

research conducted on this issue, as well as to all research which

explores more effective ways of preventing acquisition or further

transmission of the virus.

_________________

Guidelines on ethical participatory research with HIV positive women.

July 2003. DRAFT FIVE - consultation document

This document is still in draft form and is open for consultation. If

you have any comments or suggestions about the document, do please

send them to us at info@... by 1st October 2003.

These guidelines have been adapted from those developed by the Royal

Society of Canada regarding participatory research.

Background

ICW believes that, insofar as it is possible, all HIV positive women

should be offered meaningful opportunities to be actively involved in

all medical, socio-economic or other research which is undertaken

concerning women living with the virus, regardless of our age,

religion, culture, socio-economic background, parental status, length

of knowledge of HIV positive status, or sexuality.

We believe that, as women living with this virus, we are uniquely

placed to contribute our knowledge, skills and experience to all

research conducted on this issue, as well as to all research which

explores more effective ways of preventing acquisition or further

transmission of the virus.

Much current research on HIV ignores gender-related differences with

regard to transmission, the effects of the virus on the individual

concerned, and appropriate forms of care or treatment for that

individual. Much current research also ignores the effects of the

research process itself on the psychological and economic well-being

of the individual women concerned.

Below we present some guidelines and categories for classifying

participatory research protocols for your consideration in developing

socio-economic research programmes. We have not had room here to

consider issues regarding biomedical research programmes also,

although there are many similar issues to address. (Readers

interested in ethical considerations in biomedical research are

encouraged to read the two articles on the websites below. The first

outlines the pros and cons of the proposed amendments to the Helsinki

declaration.

http://www.mja.com.au/public/issues/172_06_200300/stockhausen/stockhau

sen.html The second document is on the CIOMS website

http://www.cioms.ch/frame_guidelines_nov_2002.htm and is long and

comprehensive.)

We believe that only through involving HIV positive women in all

stages of research will a clearer picture emerge of the issues facing

HIV positive women.

This information is long overdue. It is also critical, if we are

together to find a way of reducing the effects of the virus on women

in the future, and ultimately to eradicate the spread of the virus to

future generations.

Instructions

The following guidelines can serve to appraise the extent to which

research projects align with principles of participatory research.

We propose that you set up a " stakeholders' research advisory group "

which consists of diverse members of the community(ies) concerned and

others who wish to conduct the research with them. Together you could

then go through these guidelines. This process may enable you to

identify areas where your opinions differ and will, we trust, enable

you to discuss and resolve them, before proceeding further.

For each guideline, check only one bullet point. Some of the

guidelines may not be applicable to the research project, in which

case no bullet point should be checked, or bullet points labeled " not

applicable " should be added to all the guidelines for users to check

when appropriate. The categories identified by bullet points for most

guidelines increase in appropriateness to participatory research from

top to bottom, but the most appropriate level for some projects on

some guidelines might be more toward the middle or even to the top of

the row of bullet points.

Guidelines

1. Participants and the nature of their involvement:

a) how have the researchers arrived at their definition of the

community/ies concerned in the research?

no consultation with potential participants

inexplicit/general consultation with potential participants

general but explicit consultation with potential participants

general/detailed consultation with potential participants

detailed consultation with potential participants

Is the community interest clearly described or defined?

no description

inexplicit/general description

general description but explicit

general/detailed description

detailed description

c) Are different sections of the community and the likely diversity

of their experiences and perspectives going to be acknowledged and

upheld during the research process (on the basis of eg age, parental

status, socio-economic well being, ethnicity, religion, sexuality,

awareness of positive HIV status, length of time of knowing HIV

positive status, death of children, etc)?

no acknowledgement of issues of difference

little acknowledgement of issues of difference

moderate acknowledgement of issues of difference

much acknowledgement of issues of difference

high acknowledgement of issues of difference

d) Do members of the defined community participating in the research

have concern or experience with the issue to be investigated?

no concern or experience with the issue

little concern or experience with the issue

moderate concern or experience with the issue

much concern or experience with the issue

high concern or experience with the issue

e) Are interested members of the defined community provided

opportunities to participate in the research process?

no opportunity to participate

little opportunity to participate

more than one opportunity to participate

several opportunities to participate

many opportunities to participate

f) Is attention given to barriers to participation, with

consideration of those who have been under-represented in the past?

no attention to offsetting barriers

low degree of attention to offsetting barriers

moderate degree of attention to offsetting barriers

moderate/high degree of attention to offsetting barriers

high degree of attention to offsetting barriers

g) Has attention been given to establishing within the community an

understanding of the researchers' commitment to the issue?

no attention to the researchers' commitment

low attention to the researchers' commitment

moderate attention to the researchers' commitment

high attention to the researchers' commitment

explicit agreement on the researchers' commitment

h) Are community participants enabled to contribute their physical

and/or intellectual resources to the research process?

no enabling of contribution from participants (researchers do it all)

mostly researcher effort; some support for contribution from

participants

about equal contributions from participants and researcher

mostly resources and efforts of participants; researchers have some

direct input

full enabling of participants' resources (researchers act only as

facilitators)

2. Origin of the research question:

a) Did the impetus for the research come from the defined community?

issue posed by researchers or other external bodies

impetus originated mainly from researchers; some input from community

impetus shared about equally between researchers and community

impetus originated mainly from community; some impetus from

researchers

issue posed by the community

Is an effort to research the issue supported by members of the

defined community?

support for research from very few, if any, community members

less than half of the community supports research on this issue

community is roughly divided on whether the issue should be

researched

more than half of the community supports research on this issue

support for research from virtually all community members

3. Purpose of the research:

a) Can the research facilitate learning among community participants

about individual and collective resources for self-determination?

no provision for learning process

low provision for learning process

moderate provision for learning process

moderate/high provision for learning process

high provision for learning process

Can the research facilitate collaboration between community

participants and resources external to the community?

no potential for collaboration

low potential for collaboration

moderate potential for collaboration

moderate/high potential for collaboration

high potential for collaboration

c) Is the purpose of the research to empower the community to address

determinants of health and well-being?

purpose devoid of empowerment objective

low priority empowerment objective

moderate priority empowerment objective

moderate/high empowerment objective

high priority empowerment objective

d) Does the scope of the research encompass some combination of

gender-related, age-related, political, social and economic

determinants of health?

no consideration of political, social or economic determinants

only one or two determinants are considered

limited consideration of combined determinants of health

moderate consideration of combined determinants of health

comprehensive consideration of combined determinants

4. Process and context-methodological implications:

a) Does the research process apply the knowledge of community

participants in the phases of planning, implementation, and

evaluation?

no use of community knowledge in any phase

use of community knowledge in one or two phases only

limited use of community knowledge in all three phases

moderate use of community knowledge in all three phases

comprehensive use of community knowledge in all three phases

Are the methods used for research accessible by non-literate as

well as literate community participants (eg " participatory learning

approaches " (PLA) including role-play and drawing etc.)?

no use of PLA methods

low use of PLA methods

moderate use of PLA methods

moderate/high use of PLA methods

high use of PLA methods

c) For community participants, does the process allow for learning

about these research methods?

no opportunity for learning about research methods

low opportunity for learning about research methods

moderate opportunity for learning about research methods

moderate/high opportunity for learning about research methods

high opportunity for learning about research methods

d) For researchers, does the process allow for learning about the

community's visions and potential barriers to achieving those

visions?

no opportunity for learning about the community visions and barriers

low opportunity for learning about the community visions and barriers

moderate opportunity for learning about the community visions and

barriers

moderate/high opportunity for learning about the community visions

and barriers

high opportunity for learning about the community visions and

barriers

e) Does the process allow for flexibility or change in research

methods and focus, as necessary?

methods and focus are pre-determined; no potential for flexibility

mostly pre-determined methods and focus; limited flexibility

about equal blend of pre-determined methods and focus with

flexibility

high flexibility; some pre-determined methods and focus

complete flexibility; methods and focus not predetermined

f) Are procedures in place for appraising experiences during

implementation of the research?

no procedures for appraising experiences

few procedures for appraising experiences

some procedures for appraising experiences

many procedures for appraising experiences

comprehensive procedures for appraising experiences

g) Are community participants involved in analytical issues:

interpretation, synthesis and the verification of conclusions?

no involvement of participants in any analytic issue

involvement in one or two analytic issues

only limited involvement of participants in all three analytic issues

moderate involvement of participants in all three analytic issues

comprehensive involvement all three analytic issues

5. Opportunities to address the issues of interest:

a) Is the potential of the defined community for individual and

collective learning reflected by the research process?

research process not aligned with potential for learning

limited alignment of research process with potential for learning

moderate alignment of research process with potential for learning

moderate/high alignment of research process with potential for

learning

comprehensive alignment of research process with potential for

learning

Is the potential of the defined community for action reflected by

the research process?

research process not aligned with potential for action

limited alignment of research process with potential for action

moderate alignment of research process with potential for action

moderate/high alignment of research process with potential for action

comprehensive alignment of research process with potential for action

c) Does the process reflect a commitment by researchers and community

participants to social, individual or cultural actions consequent to

the learning acquired through research?

no commitment to action beyond data collection and analysis and

writing report for funding agencies

low commitment to social actions based on learning through research

moderate commitment to social actions based on learning through

research

moderate/high commitment to social actions based on learning through

research

comprehensive commitment to social actions based on learning through

research

6. Nature of the research outcomes:

a) Do community participants benefit from the research outcomes?

research benefits researchers or external bodies only

research benefits researchers/ external bodies primarily; community

benefit is secondary

about equal benefit of research for both researchers/external bodies,

and community

research benefits community primarily; benefit is secondary for

researchers/ external bodies

explicit agreement on how the research will benefit the community

Is there attention to or an explicit agreement for acknowledging

and resolving in a fair and open way any differences between

researchers and community participants in the interpretation of the

results?

no attention to or any agreement regarding interpretation issues

low attention to interpretation issues

moderate consideration of interpretation issues

high attention to interpretation issues; no explicit agreement

explicit agreement on interpretation issues

c) Will HIV positive women be able to review any written or oral

reports, for content, language and style, before any public

presentation?

no opportunity for HIV positive women to review the reports

low opportunity for HIV positive women to review the reports

moderate opportunity for HIV positive women to review the reports

high opportunity for HIV positive women to review the reports; no

explicit agreement

explicit agreement for HIV positive women to review the reports

d) Is there attention to or an explicit agreement between researchers

and community participants with respect to ownership of the research

data?

no attention to or any agreement regarding ownership issues

low attention to ownership issues

moderate consideration of ownership issues

high attention to ownership issues; no explicit agreement

explicit agreement on ownership issues

e) Is there attention to or an explicit agreement between researchers

and community participants with respect to the dissemination of the

research results? (For instance, is it planned that HIV positive

women should present the research at public fora? Is it planned that

HIV positive women should be included as co-authors of any published

documents relating to the research? Is it intended that other HIV

positive women should be included amongst the recipients of the

publications and at presentations regarding the research?)

no attention to or any agreement regarding dissemination issues

low attention to dissemination issues

moderate consideration of dissemination issues

high attention to dissemination issues; no explicit agreement

explicit agreement on dissemination issues

ADAPTED FROM L.W. Green, M.A. , M. , C.J. ish, C.P.

Herbert, W.R. Bowie, M. O'Neill, Study of Participatory Research in

Health Promotion. Royal Society of Canada, Ottawa, Ontario, 1995, pp

43-50. Reproduced with the kind permission of the Royal Society of

Canada and the authors.

NB For more information on participatory research processes, please

view

http://www.ids.ac.uk/ids/particip/research/index.html

We welcome any comments or feedback which you have on these

guidelines. Please contact us on info@...

http://www.icw.org/tiki-read_article.php?articleId=29