Childbearing migrant women and equal access to research participation Amy Low BSc MSc (c), Anita Gagnon RN MPH PhD, Lisa Merry RN MSc( A ), Franco Carnevale

Childbearing migrant women and equal access to

research participation

Amy Low BSc MSc (c), Anita Gagnon RN MPH PhD,

Lisa Merry RN MSc(A) , Franco Carnevale RN PhD

McGill University and McGill University Health Centre

Canadian Public Health Association June 4 2008

Introduction Health is a human right (WHO & UN High Commissioner for Human Rights)

“governments must generate conditions in which everyone can be healthy as possible”

Availability, Accessibility, Acceptability, Quality Respect, Protect, Fulfill

Research needs to address means of fulfilling this right Especially for vulnerable populations

Childbearing migrant women face reduced access to research participation Marginalized position seems to limit their participation

Introduction

Childbearing migrant women are more vulnerable to harmful health outcomes Migration history Infections, nutritional deficiencies, PTSD, depression Reduced access to care, language barriers, low SES

There are challenges that limit their research participation It is unethical to deny them research that could improve their

health status Existing ethical guidelines have limitations

None specifically addressing childbearing migrant women Little guidance on the procedures for upholding these ethics

Scenario 1 Researcher wants to conduct a

study addressing the health concerns in the early post-partum period of childbearing refugees and asylum seekers in Canada

Methods proposed: Consultations with NGO’s for the

development of questionnaires Recruitment from post-partum unit

Submitted to hospital and universities Research Ethics Boards (REBs)

Scenario 2

Asylum-seeking woman from Afghanistan only speaks Dari, the husband is present and speaks English and Dari

Recruiter asks mother if she would like to participate in a study and hands her a consent form, which she directly hands to her husband

Her husband reads it and asks if this will help with their asylum seeking application

Research Question

What are the challenges that contribute to inequities of childbearing migrant women participating in research?

How may these challenges be addressed in an ethical manner?

Methods

Step 1 Ethics’ guidelines

reviewed: The Declaration of Helsinki The Belmont Report Tri-Council Policy Statement:

Ethical conduct for research involving humans

CIHR Guidelines for Health Research Involving Aboriginal People

Guidelines for the conduct of research involving human subjects at the NIH

Common ethical principles Respect for justice and inclusiveness Respect for free and informed

consent Respect for privacy and

confidentiality Respect for vulnerable persons Balance of harm and benefit Minimizing harm Maximizing benefits

Methods

Step 2 Review of the literature

Identified challenges Strategies to overcome challenges

Step 3 Consultation with researchers and ethicists

Indentified challenges and strategies

ResultsChallenges and strategies to overcome challenges

Challenges and strategies to overcome challenges (Scenario 1)

Ethical principles & Guidelines

Challenges Overcoming challenges

Respect for justice and inclusiveness:

Benefit from research

REB conduct

Unfair burden of research

Identifying beneficiaries REBs may not be equipped to evaluate protocols

Burden of research

REBs used external resources to evaluate

Scientific support for recruitment

Respect for vulnerable population:

Community input

Involvement of NGO necessitate time

Paid NGO’s for their time






REB conduct



Burden of research




Community input








REB conduct



Burden of research




Community input








REB conduct



Burden of research




Community input








REB conduct



Burden of research




Community input






Respect for free and informed consent:

Information understanding voluntariness

Language barriers

Husband answers for wife

Familiarity with research and rights

Translation, back-translation, cultural validation

Use simple language

Obtain consent from husband and wife

Take time for explanations

Respect for privacy and confidentiality

Precarious immigration status Strict code of confidentiality

Information is not relayed to government immigration officials


Culturally appropriate

Culturally appropriate method of data collection and subject matter

Address both husband and wife

Explain methods and why questions are being asked






Language barriers




Use simple language
















Language barriers




Use simple language
















Language barriers




Use simple language
















Language barriers




Use simple language
















Language barriers




Use simple language















Information

understanding voluntariness

Language barriers




Use simple language











Discussion

Challenges: Maintaining confidentiality

Family members present Small ethnic/cultural community

Costs burden of implementing strategies

Conclusion

Recommendations Hiring and training of experienced staff

researchers Cultural sensitivity Trauma training Strict code of confidentiality

Further development of strategies Collaboration

Thank you

Thanks to Jane Chambers-Evans and Dr. Carolyn Ells for their contributions to the strategies to overcome challenges, Zeinab

Jeambey for the development of the scenarios & to Diane Habbouche, Marie-Pier Joly and Praem Mehta for their general support.

E-mail: [email protected]

Documents

Childbearing migrant women and equal access to research participation Amy Low BSc MSc (c), Anita Gagnon RN MPH PhD, Lisa Merry RN MSc( A ), Franco Carnevale