Beyond Sex and Gender: Making Research More Participatory for Vulnerable Populations The Health Researcher’s Toolkit: Why Sex & Gender Matter

  • Introduction
    • The Health Researcher’s Toolkit: Why Sex & Gender Matter
    • Introduction
    • Module Objectives
    • Presenter Profile
  • Content
    • Sex & Gender
    • Key Terms & Concepts
    • Module Overview
    • Diabetes
    • Tamil Health Association Healthy Food Program
    • Reflection
    • Community Partners
    • Diabetes Action Canada
    • Patient Partner: A Mother's Experience
    • Conducting Participatory Research
    • Experiential Knowledge and Lived Experiences
    • Indigenous Populations
    • Assessing the 13 Moon Model Journey
    • Challenges
    • Rewards
  • Conclusion
    • Module Quiz
    • Quiz Results
    • Resources
    • About Women's Xchange
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The Health Researcher’s Toolkit: Why Sex & Gender Matter

Developed by the Women’s Xchange

Learning objectives

  • Define sex and gender and know how to correctly apply these terms
  • Explain why sex and gender matter in health research
  • Identify and apply methods for integrating sex and gender in different types of studies


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Introduction

Beyond Sex and Gender: Making Research More Participatory for Vulnerable Populations

A module of The Health Researcher’s Toolkit: Why Sex and Gender Matter

Presenter: Dr Robin Mason

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Module Objectives

In this module, you will learn

  • About strategies to strengthen collaborative research with vulnerable, marginalized or socially excluded communities.
  • How to combine both academic aims for scholarly output and desires to collaborate in meaningful ways with vulnerable community members.
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Presenter Profile

Dr Robin Mason

Scientific Lead, Women’s Xchange, Women’s College Hospital


Download Dr. Robin Mason's biography

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Sex & Gender

Not interchangeable terms

Sex

  • Biological attributes
  • Associated with physical and physiological features
  • Often conceptualized as binary: female or male
    • However biological attributes and expression can vary as individuals may be born with reproductive anatomy that doesn’t fit the typical definition of female or male
  • Commonly understood as what was assigned at birth

Gender

  • Socially constructed and fluid
  • Culturally specific
  • Roles, behaviours, expressions, identities of girls, women, boys, men, gender diverse people
  • Gender identity
    • One’s innermost concept of self
    • May be same or differ from sex assigned at birth
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Key Terms & Concepts

Vulnerable Populations or Groups: Vulnerable individuals or groups are those at greater risk for experiencing disparities, poor health status and/or unequal access to healthcare due to individual intrinsic physical states or conditions; psychological challenges or social conditions.

Resilience: In psychology, resilience is used to describe an individual’s positive adaptation over time to adversity, trauma, tragedy, threats or other sources of stress including those that arise from serious health, relationship, or financial challenges.

Collaboration: The process through which a group of diverse actors undertakes a joint initiative to address shared concerns or achieve common goals.

Intersectionality: Sociological theory developed by Kimberlé Crenshaw describing the complex, cumulative way in which the effects of multiple forms of discrimination (such as racism, sexism, classicism) combine, overlap and intersect especially in the experiences of marginalized individuals or groups.

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Module Overview

Participation in research exits along a continuum:

Study Subject, Engagement on an advisory committee, full particption as aco-investigator

Vulnerability

Vulnerability will primarily be considered in relation to the experiences of individuals or groups with diabetes or at risk of developing diabetes. It is also important to recognize that vulnerable individuals or groups are also often very resilient - they have the capacity and ability to meet the circumstances of their vulnerability with strength and positive action.

people celebrating with arms upraised

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Diabetes

Diabetes:

Disease in which blood glucose levels are above normal, meaning that the insulin required to convert food to energy is either insufficient or absent.

Three main types of diabetes:

  • Gestational diabetes occurs during pregnancy and generally disappears once the baby is born.
  • Type 1 diabetes is a chronic disease in which the islet cells in the pancreas no longer produce insulin.
    • Individuals with Type 1 diabetes must frequently test their blood to determine the level of circulating glucose and acquire necessary insulin through injections, or a pump.
  • In Type 2 diabetes insulin is produced by the pancreas but the liver, muscle, and fat cells are “insulin resistant”, meaning they are unable to use that insulin.
    • Individuals susceptible to Type 2 diabetes are sometimes able to avoid or delay its manifestation by making changes to their diet, physical activity levels, and/or weight.

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Tamil Health Association Healthy Food Program

Tamil Health Association Healthy Food Program

The Tamil Health Association’s Healthy Food Program was a community-based research project funded by Women’s Xchange’s 15K Challenge.


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Reflection

What elements contributed to the project’s success?

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Community Partners

Can include relevant stakeholders including policymakers, care providers, advocates, as well as those most affected by an issue.

  • In this module, the word community is used to describe a formal or informal group of individuals who share a condition, disease or other common interest, but do not necessarily live in a common locale.
  • If the community shares a particular chronic condition or disease then avenues for accessing community members may include local, provincial or national groups that fundraise or advocate on behalf of those with the disease, patient support groups, as well as traditional clinical settings.
  • Some vulnerable communities are also highly stigmatized. Taking steps to become familiar with the community and working to build mutual trust between community members and researchers can result in greater participation by and meaningful inclusion of more vulnerable community members.

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Diabetes Action Canada

Diabetes Action Canada (DAC) is a large, national research network with multiple sites working on numerous studies designed to reduce diabetes-related complications.

Numerous individuals affected by diabetes have been recruited, encouraged and supported in becoming active partners in the research activities. Much of its success can be attributed to its active patient circles which meet regularly to discuss DAC network activities and provide input on the various studies.

In the video below, one of DAC’s patient partners, Howard English, explains why he is taking the time to participate as a patient partner in DAC.

Howard English Bio:

Howard is from Winnipeg, Manitoba. He currently lives with Type 2 diabetes. Howard is a member of the General Patient Circle of Diabetes Action Canada. Howard has been diagnosed with Type 2 diabetes for over 10 years and is very passionate about patient engagement.


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Patient Partner: A Mother's Experience

Sasha’s Story – “A Mother’s Experience”

Sasha, another DAC patient partner has a slightly different motivation behind her participation. Feeling both overwhelmed and isolated when her young son was diagnosed with Type 1 diabetes, she found support by reaching out and joining others with similar concerns.Her son too has benefitted from participating in group activities with other young people with diabetes.

Sasha Bio:

“My name is Sasha Delorme. I am 30 years old and was born in Yorkton, Saskatchewan but now reside in Regina, Saskatchewan. I am Metis, my mother was placed for adoption by a Metis family and my Father is Ukrainian and aboriginal as well. I am a member of Diabetes Action Canada Collective Patient Partner Circle (since October 2017), and recently became a member of the Indigenous Patient Partner Circle. As a family we are involved in events put on by Juvenile Diabetes Research Foundation. We fund raise for their annual Walk for the Cure, and I am a member of a Parents of Children with Type 1 Diabetes support group. Our family attends Diabetes Canada’s “Family D-Camp” in the fall, as it is a great opportunity for my son to meet other children who have Type 1 diabetes. We keep very busy and staying involved in the diabetes community is an important support for us.”



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Conducting Participatory Research

Considerations for Conducting Participatory Research:

Research Question Development

  • Research has its beginnings in a question, or a series of questions.
  • In participatory approaches, important questions may develop from a community or individual’s experience.

Research Design and Methods

  • Researchers may be approached for methodological assistance in answering the questions.
  • In more participatory research with vulnerable community members, a number of issues need careful consideration:
    • Decisions about the extent of participation by vulnerable community members requires consideration of the potential risks versus benefits to them and society.
    • Questions to consider to determine level of participation

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Experiential Knowledge and Lived Experiences

  • To minimize power imbalances that otherwise can derail the collaboration, it is important to create the space where both experiential knowledge and professional expertise are valued.
  • Processes to build consensus, or at minimum strategies to resolve disagreement on key issues, need to be developed.
  • Leaders with good communication and facilitation skills are required to ensure all perspectives are heard, particularly if some members are less comfortable with the processes of academic research and public speaking.
  • Addressing the questions important to vulnerable community members may require changes in the study design or additional data collection strategies.

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Indigenous Populations

Vulnerable Communities - Indigenous Populations

  • Many vulnerable communities have had poor past experiences with research and researchers, making it more challenging for those external to the community to engage participants.
  • For example, Canada’s Indigenous peoples are exploited when researchers parachute into a community and leave without sharing study results, damaging trust between researchers and the community.
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Assessing the 13 Moon Model Journey


  • Compared to other communities, Indigenous populations experience higher rates of diabetes, poorer overall health and challenges accessing health care. Compared to women in the general population, Indigenous women experience more diabetes, as well as circulatory problems, respiratory problems, hypertension, cervical cancer, and violence.
  • Assessing The Thirteen Moon Model Journey is one example of an Indigenous led study exploring changes to women’s health, well being and empowerment. Indigenous views, philosophy, learning methods and practices were integrated into the women’s monthly meetings and discussions.

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Challenges

Challenges to Consider:

  • More participatory forms of research can be more time consuming to get off the ground and take longer to complete
  • Sometimes the ethics review process adds to the time required to get a collaborative study up and running. Ethics review processes are particularly important when research involves vulnerable individuals or communities.
  • Determining potential risk is complicated; there are no standards for comparison or agreement on what constitutes an acceptable level of risk.
    • Some use the dangers of everyday life as the standard for comparison, but there is no agreement on what is considered dangerous in daily life. Importantly, dangers generally differ for women and men.
    • There is also the risk that being excluded from a particular study may cause more harm to vulnerable communities than the research activities themselves.
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Rewards

Rewards of Collaboration

For researchers: The research is grounded in the real world, “lived experience” of those with experiential knowledge.

  • Research findings are more likely to be accepted and experience rapid ‘uptake’.
  • Community partners’ views may open new insights not previously considered by researchers.
  • The resources and networks of community partners likely differ from those of academic researchers. These may provide other avenues for study recruitment and dissemination of findings.

For Community Partners:

  • Enhanced understanding of research and research processes.
  • Contributions to improving the health and well-being of others.
  • Possible gains in self-confidence, new networks, relationships, and experiences.
  • Other benefits may include publications or conference attendance, other types of academic credit, access to reference letters, etc.

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Module Quiz

Test Your Understanding

  • Five questions
  • Select the best response
  • When you have answered all questions, click submit

1. Vulnerable populations include:

2. Possible rewards of collaborating with vulnerable populations can include:

3. Patient circles and patient partners may provide participants:

4. In which ways did the 13 Moon Model Journey employ culturally sensitive participatory action research approaches?

5. In which ways did the Tamil Health Association produce culturally appropriate resources for knowledge dissemination?

Quiz Results

You got out of questions correct.



1. Vulnerable populations include:

A. Individuals at greater risk for experiencing disparities

B. Individuals with no sense of autonomy and lacking resilience

C. Individuals with unequal access to healthcare due to social conditions

D. Only A and C are correct

E. All of the above

2. Possible rewards of collaborating with vulnerable populations can include:

A. Knowledge that one’s research is grounded in real world, “lived experience”

B. Research findings are more likely to be accepted and experience rapid ‘uptake’.

C. New insights of understanding that researchers may have not considered.

D. Rapid review by Research Ethics Boards.

E. A, B and C

3. Patient circles and patient partners may provide participants:

A. The opportunity to work collaboratively with researchers may help break down patient/research barriers.

B. Social connections, reducing isolation and supporting healthier coping.

C. With rapid access to treatment.

D. A and B

E. All of the above.

4. In which ways did the 13 Moon Model Journey employ culturally sensitive participatory action research approaches?

A. Created a circle where everyone took turns speaking and all voices were heard

B. Used a medicine wheel to measure outcomes of well-being

C. All community members were listed as authors on the resulting publication.

D. A and B

E. None of the above

5. In which ways did the Tamil Health Association produce culturally appropriate resources for knowledge dissemination?

A. The Tamil Health Association produced a healthy eating cookbook addressing common myths

B. The Tamil Health Association worked with the community to identify healthcare gaps and need

C. The Tamil Health Association initiated exercise programs tailored to activities enjoyed by women in the community.

D. A and B

E. None of the above

Resources

Thank you for completing the module!

Please See Additional Resources Below

Examples of relevant search terms for two databases, Medline and CINAHL, were developed and can be found in the attached document.CLICK HERE FOR A DOWNLOADABLE PDF

Pittaway, E., Bartolomei, L., & Hugman, R. (2010). ‘Stop stealing our stories’: The ethics of research with vulnerable groups. Journal of human rights practice, 2(2), 229-251.

Wallerstein, N., & Duran, B. (2010). Community-based participatory research contributions to intervention research: the intersection of science and practice to improve health equity. American journal of public health, 100(S1), S40-S46.

Jagosh, J., Macaulay, A. C., Pluye, P., Salsberg, J., Bush, P. L., Henderson, J., ... & Seifer, S. D. (2012). Uncovering the benefits of participatory research: implications of a realist review for health research and practice. The Milbank Quarterly, 90(2), 311-346.

UyBico, S. J., Pavel, S., & Gross, C. P. (2007). Recruiting vulnerable populations into research: a systematic review of recruitment interventions. Journal of general internal medicine, 22(6), 852-863.

Mason R. & Berman H. Vulnerability, Risk, Harm and Benefit: The Business of Institutional Review Boards. Humanities & Social Sciences Review, 2014, 3(5):517-524

About Women's Xchange

Based at Women’s College Hospital, Women’s Xchange is a women’s health knowledge translation and exchange centre, designed to promote women’s health research across the province. Funded by the Ministry of Health and Long-Term Care’s Health Service Research Fund (HSRF), the centre supports women’s health research in both academic and community settings. In addition to supporting research, Women’s Xchange also provides women’s health researchers and trainees across the province with opportunities to gain new skills and develop new collaborations.

The Health Researcher’s Toolkit: Why Sex and Gender Matter

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