Community-Based Participatory Research for Hard-to-Reach Populations: A Collaborative Approach

 
COMMUNITY-BASED
PARTICIPATORY RESEARCH FOR
HARD-TO-REACH POPULATIONS:
A PARTNERSHIP WITH
AN NGO
 
NUR AFIQAH MOHD SALLEH, PHD
DEPT. OF SOCIAL AND PREVENTIVE MEDICINE, FACULTY OF MEDICINE, UM
CENTRE OF EXCELLENCE FOR RESEARCH IN AIDS, UM
 
IMOHDSALLEH@UM.EDU.MY
 
OUTLINE
 
Date
 
Q&A
(5mins)
Q&A
(5mins)
 
1.45 – 2.05: Community-based participatory research for hard-to
reach populations  (Iqa Mohd Salleh) (20mins)
 
GROUP ACTIVITY (20 MINS)
 
Date
 
In recent years,  there has been an increase in the number of amphetamine-type
stimulants (ATS) use. The use of ATS can give rise to risky sexual behaviours, and the
number of HIV and Hepatitis C infections. You are a part of a community advisory
board that seeks to implement harm reduction for ATS use (i.e. safer smoking kits to
prevent sharing).
 
In your group,
 
1)
Discuss members of the community advisory board.  Who should you involve?
How will each member contribute?
2) What is your positionality statement(s)?
3) What are your plans to implement harm reduction for ATS use. (i.e. Specific key
activities)
 
 
 
 
 
Outreach work to one of the hidden sites where
people are injecting drugs
 
WHY ARE
THEY
HIDDEN
 
Criminalization of drug use
Moral model of drug use (Societal
perceptions, poor lifestyle choice)
Internal and external stigma
Mistrust of the health care system
Living on the margins of society
 
WHO ARE HARD TO REACH
POPULATIONS
 
 
Resource: 
Lambert EY, Wiebel WW, editor. 
The Collection and Interpretation of Data from
Hidden Populations.
 Washington, DC: United States National Institute on Drug Abuse;
1990. from 
http://www.drugabuse.gov/pdf/monographs/download98.html
. [
Google
Scholar
]
 
Ethnic/racial groups (e.g. Latino,
Hispanics, Asian, or mixed)
Substance abusers
General - ‘vulnerable’,
‘minority’, ‘disadvantaged’
Indigenous people
Low income, disadvantaged
area
HIV (alone or with drug
addiction or ethnic)
 
Gay, lesbian, bisexual and
transgender (LGBT)
Low literacy group
Homeless people
High risk Youth
Survivors of violence
Sex workers
Mental illness
People with disability
 
CHALLENGES WITH HEALTH RESEARCH
 
 
Sampling: 
population-based probability sampling tends to be a time
and cost inefficient strategy for sampling socially disadvantaged groups
Participation
: Low response rates in research due to mistrust in
research or researcher, fear of authority; fear of being publicly exposed,
particularly if they engaged in illegal behaviours
Data collection
: Language, lack of education and low literacy barriers
may prohibit the collection of certain types of data such as self-
administered survey data.
Intervention delivery & uptake
: interventions that do not align with
the perceived needs or priorities of the targeted groups
 
 
 
 
 
 
 
OVERCOMING
CHALLENGES
 
Partnerships with local community-
based organizations, non-governmental
organizations
 help researchers gain access to an otherwise
hard-to-reach groups;
a reciprocal relationship in which community
members and researchers have knowledge
and learn from the other;
community-initiated research projects that
seek academic partnerships and use the
outcomes to direct policy and program
delivery.
 
SPECIFIC ROLES OF
NGOS
 
collaborate with community organizations with
access to those groups to draw a 
convenience
sample 
through NGOs; community groups can be
involved in recruitment process
engagement of local peer or known
community members 
as ‘recruiters’ will increase
trust and response rates; for promotion and
education about the research including ‘cultural
brokers’ to liaise between participants and
researcher
community advisory groups is likely to be beneficial
and increase the 
perception that the research
is community-driven and responsive
 
 
 
 
 
In RDS, starting with an initial convenience sample
(“seeds”), researchers incentivise respondents to recruit
their peers to also participate in the survey.
 
COMMUNITY ENGAGEMENT IN
RESEARCH
 
Date
 
Your Footer Here
 
 
 
 
Community-based participatory research
in community engagement in research is
BEYOND engaging the community as study
participants
 
 
 
COMMUNITY BASED PARTICIPATORY
RESEARCH
 
https://georgiactsa.org/news-events/news/2017/community/cerp-pub/index.html
 
Sprague, L., Afifi, R., Ayala, G., & El-Nasoor, M. L. (2019). Participatory praxis as an
imperative for health-related stigma research. 
BMC medicine
17
(1), 1-8.
The partners contribute 
unique strengths and
shared responsibilities
 to enhance
understanding of a given phenomenon and the
social and cultural dynamics of the community/
…a collaborative approach to research that
equitably involves community members,
organizational representatives, and researchers
in all aspects of the research process.
 
(The partners) integrate the knowledge gained
with 
action to improve the health and well-
being of communities
.
 
10 KEY ELEMENTS OF CBPR
 
Date
 
Israel, B. A., Schulz, A. J., Parker, E. A., Becker, A. B., Allen, A. J.,
Guzman, J. R., & Lichtenstein, R. (2017). Critical issues in developing
and following CBPR principles. 
Community-based participatory research
for health: Advancing social and health equity
3
, 32-35.
 
 
COMMUNITY ENGAGEMENT IN RESEARCH
 
Where is CBPR in the continuum of Community Engagement in Research?
 
Key, K. D., Furr-Holden, D., Lewis, E. Y., Cunningham, R., Zimmerman, M. A., Johnson-Lawrence, V., &
Selig, S. (2019). The continuum of community engagement in research: a roadmap for understanding and
assessing Progress. 
Progress in community health partnerships: research, education, and action
13
(4), 427-434.
 
CONTEXTUAL FACTORS
 
Date
 
 
Contextual factors: 
history, trust, relationship building,
respect and transparency
influence and affect the points of engagement listed on th
e
continuum
may affect the type of engagement and the overall results of
the research
 
 
EQUITY INDICATORS
 
Date
 
Equity indicators: 
ownership, decision-making, resource-
sharing, mutual benefit, responsibility
Critical discussions around control, ownership, and decision-
making processes make CBPR distinct from traditional
research
This continuum holds the promise of encouraging researchers
to become more open to engaging community in research.
 
 
PERSPECTIVE AND EXPERIENCE
(COMMUNITY VS RESEARCHERS)
 
Key, K. D., Furr-Holden, D., Lewis, E. Y., Cunningham, R., Zimmerman, M. A., Johnson-Lawrence, V., & Selig, S. (2019). The continuum of community engagement in
research: a roadmap for understanding and assessing Progress. 
Progress in community health partnerships: research, education, and action
13
(4), 427-434.
 
KEY ACTIVITIES IN CBPR
 
Date
 
Needs Assessment
-
Articulate the importance of problem. 
Data can include federal, state and local level
data. Sources should be reputable sources such as federal, state and local level health
agencies, datasets led by scientists, peer-reviewed articles, and policy reports
. Data
collection can involve surveys and FGDS.
 
Researcher Positionality
 
 
 
 
POSITIONALITY STATEMENT
 
Date
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.
 
A PARTNERSHIP WITH PIMM:
THE SEMARAK STUDY
A STUDY TO ENGAGE MALAYSIAN
PEOPLE WHO
INJECT DRUGS (PWID) TO
COMPREHENSIVE HIV KEY SERVICES
 
 
Date
 
Your Footer Here
 
 
 
KEY AREAS OF INSAF MURNI’S
INVOLVEMENT
 
Date
 
-
Shared resources
(material, expertise)
-
Shared decisions
 
-
Study setting
-
Structuring research
flow
-
Questionnaires
-
Training of RAs
 
-
Stakeholders
meeting with JKN
and KK Pandamaran
 
-
Talks and Research
Carnival
 
 
Date
 
CHALLENGES WITH CBPR
 
Maintaining the boundaries between researcher and researched,  academic and
activist
Tensions between research benefit and potential harm, including obligations to
produce benefits for community identified issues
 
 
T
E
A
M
 
M
E
M
B
E
R
S
C
Your Footer Here
Iqa Mohd Salleh, SPM; CERiA
‘Abqariyah Yahya, SPM
Adeeba Kamarulzaman, Dept of Medicine; CERiA
Ahmad Shamsuri Muhamad, Faculty of Education
Azmawaty Mohamad Nor, Faculty of Education
Norfaezah Md Khalid, Faculty of Education
Norsafatul Aznin A. Razak, Faculty of Education
Nurul Husna Mansor,  API
Don Des Jarlais, New York University
Dr Noor Harzana Harun, KK Pandamaran
Abdul Muizz, Persatuan Insaf Murni
Siti Rosyati, Persatuan Insaf Murni              Joselyn Pang, CERiA
Saifullizam, Persatuan Insaf Murni               Nur Adilah, Faculty of Education
Rohaizat, Persatuan Insaf Murni                 Farid Aiman, Faculty of Medicine
Salahuddin, Persatuan Insaf Murni.              
Weng H. Siew
  Faculty of Medicine
Ikmal, Persatuan Insaf Murni.                      Ahmad Idzwan, Community
Alyah, Persatuan Insaf Murni
Fitri Sharizat, Persatuan Insaf Murni
 
Q&A
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This presentation focuses on community-based participatory research for hard-to-reach populations, particularly on implementing harm reduction strategies for amphetamine-type stimulant (ATS) use. It addresses community engagement, outreach to hidden sites, societal perceptions of drug use, and the challenges faced by marginalized groups. The importance of involving diverse community advisory board members, developing harm reduction plans, and understanding the needs of hard-to-reach populations is highlighted.


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  1. COM M U NI T Y - B A SE D PA RT I CI PAT ORY R E SE A R CH F OR HA R D - T O- R E ACH POPUL ATI ONS: A PA RT NE R SHI P W I T H A N NGO N U R A F I Q A H M O H D S A L L E H , P H D D E P T. O F S O C I A L A N D P R E V E N T I V E M E D I C I N E , FAC U LT Y O F M E D I C I N E , U M C E N T R E O F E X C E L L E N C E F O R R E S E A R C H I N A I D S , U M I M O H D S A L L E H @ U M . E D U . M Y

  2. OUTLINE 1.45 2.05: Community-based participatory research for hard-to reach populations (Iqa Mohd Salleh) (20mins) Q&A (5mins) 2.10 2.30: Promoting community engagement in implementation Science resources from the NIH and the HPTN (Sten Vermund) (20mins) Q&A (5mins) 2.35 2.55: Group Activity Small group discussion (20 mins) 2.55 3.15: Large group discussion & Conclusion (20 mins) Date

  3. GROUP ACTIVITY (20 MINS) In recent years, there has been an increase in the number of amphetamine-type stimulants (ATS) use. The use of ATS can give rise to risky sexual behaviours, and the number of HIV and Hepatitis C infections. You are a part of a community advisory board that seeks to implement harm reduction for ATS use (i.e. safer smoking kits to prevent sharing). In your group, 1) Discuss members of the community advisory board. Who should you involve? How will each member contribute? 2) What is your positionality statement(s)? 3) What are your plans to implement harm reduction for ATS use. (i.e. Specific key Date activities)

  4. Outreach work to one of the hidden sites where people are injecting drugs

  5. Criminalization of drug use Moral model of drug use (Societal perceptions, poor lifestyle choice) Internal and external stigma Mistrust of the health care system Living on the margins of society WHY ARE THEY HIDDEN

  6. WHO ARE HARD TO REACH POPULATIONS Ethnic/racial groups (e.g. Latino, Hispanics, Asian, or mixed) Substance abusers General - vulnerable , minority , disadvantaged Indigenous people Low income, disadvantaged area HIV (alone or with drug addiction or ethnic) Gay, lesbian, bisexual and transgender (LGBT) Low literacy group Homeless people High risk Youth Survivors of violence Sex workers Mental illness People with disability Resource: Lambert EY, Wiebel WW, editor.The Collection and Interpretation of Data from Hidden Populations.Washington, DC: United States National Institute on Drug Abuse; 1990. from http://www.drugabuse.gov/pdf/monographs/download98.html.[Google Scholar]

  7. CHALLENGES WITH HEALTH RESEARCH Sampling: population-based probability sampling tends to be a time and cost inefficient strategy for sampling socially disadvantaged groups Participation: Low response rates in research due to mistrust in research or researcher, fear of authority; fear of being publicly exposed, particularly if they engaged in illegal behaviours Data collection: Language, lack of education and low literacy barriers may prohibit the collection of certain types of data such as self- administered survey data. Intervention delivery & uptake: interventions that do not align with the perceived needs or priorities of the targeted groups

  8. OVERCOMING CHALLENGES Partnerships with local community- based organizations, non-governmental organizations help researchers gain access to an otherwise hard-to-reach groups; a reciprocal relationship in which community members and researchers have knowledge and learn from the other; community-initiated research projects that seek academic partnerships and use the outcomes to direct policy and program delivery.

  9. SPECIFIC ROLES OF NGOS collaborate with community organizations with access to those groups to draw a convenience sample through NGOs; community groups can be involved in recruitment process engagement of local peer or known community members as recruiters will increase trust and response rates; for promotion and education about the research including cultural brokers to liaise between participants and researcher In RDS, starting with an initial convenience sample ( seeds ), researchers incentivise respondents to recruit their peers to also participate in the survey. community advisory groups is likely to be beneficial and increase the perception that the research is community-driven and responsive

  10. COMMUNITY ENGAGEMENT IN RESEARCH Community-based participatory research in community engagement in research is BEYOND engaging the community as study participants Date Your Footer Here

  11. COMMUNITY BASED PARTICIPATORY RESEARCH a collaborative approach to research that equitably involves community members, organizational representatives, and researchers in all aspects of the research process. The partners contribute unique strengths and shared responsibilities to enhance understanding of a given phenomenon and the social and cultural dynamics of the community/ (The partners) integrate the knowledge gained with action to improve the health and well- being of communities. https://georgiactsa.org/news-events/news/2017/community/cerp-pub/index.html Sprague, L., Afifi, R., Ayala, G., & El-Nasoor, M. L. (2019). Participatory praxis as an imperative for health-related stigma research. BMC medicine, 17(1), 1-8.

  12. 10 KEY ELEMENTS OF CBPR integrates and achieves a balance between research and action for the mutual benefit of all partners builds on strengths and resources within the community facilitates collaborative, equitable partnership in all research phases promotes co-learning and capacity building among all partners recognizes community as a unit of identity emphasizes public health problems of local relevance and ecological perspectives involves systems development through a cyclical and iterative process requires a long-term process and commitment to sustainability disseminates findings and knowledge gained to all partners Israel, B. A., Schulz, A. J., Parker, E. A., Becker, A. B., Allen, A. J., Guzman, J. R., & Lichtenstein, R. (2017). Critical issues in developing and following CBPR principles. Community-based participatory research for health: Advancing social and health equity, 3, 32-35. Date

  13. COMMUNITY ENGAGEMENT IN RESEARCH Where is CBPR in the continuum of Community Engagement in Research? Key, K. D., Furr-Holden, D., Lewis, E. Y., Cunningham, R., Zimmerman, M. A., Johnson-Lawrence, V., & Selig, S. (2019). The continuum of community engagement in research: a roadmap for understanding and assessing Progress. Progress in community health partnerships: research, education, and action, 13(4), 427-434.

  14. CONTEXTUAL FACTORS Contextual factors: history, trust, relationship building, respect and transparency influence and affect the points of engagement listed on the continuum may affect the type of engagement and the overall results of the research Date

  15. EQUITY INDICATORS Equity indicators: ownership, decision-making, resource- sharing, mutual benefit, responsibility Critical discussions around control, ownership, and decision- making processes make CBPR distinct from traditional research This continuum holds the promise of encouraging researchers to become more open to engaging community in research. Date

  16. PERSPECTIVE AND EXPERIENCE (COMMUNITY VS RESEARCHERS) Key, K. D., Furr-Holden, D., Lewis, E. Y., Cunningham, R., Zimmerman, M. A., Johnson-Lawrence, V., & Selig, S. (2019). The continuum of community engagement in research: a roadmap for understanding and assessing Progress.Progress in community health partnerships: research, education, and action,13(4), 427-434.

  17. KEY ACTIVITIES IN CBPR Conduct needs assessment Sources should be reputable sources such as federal, state and local level health agencies, datasets led by scientists, peer-reviewed articles, and policy reports. Data collection can involve surveys and FGDS. What has been done before? Explain what interventions or programs have been created to solve this problem? Activity Articulate the importance of problem. Data can include federal, state and local level data. Cultural competence/ humility Identify ways to work with the community to learn about their values, cultural and traditions Needs Assessment - Articulate the importance of problem. Data can include federal, state and local level data. Sources should be reputable sources such as federal, state and local level health agencies, datasets led by scientists, peer-reviewed articles, and policy reports. Data collection can involve surveys and FGDS. Capacity building Describe the key partners that will work with researchers to solve the issue Researcher Positionality Clarify researcher positionality Provide information about researchers identities. How does their race/gender/age/sexual orientation/religion (if applicable) and overall positionality relate to the work they intend to do with this community? Issues of shared/non-shared experience. Date

  18. POSITIONALITY STATEMENT I am a female, Muslim researcher from Kuala Lumpur, Malaysia. Since the last one decade, I have been involved in numerous studies on HIV and illicit drug use, in both my home country, Malaysia and Vancouver, Canada, where I have been fortunate to complete my doctoral degree. The socio-cultural context in Malaysia has posed unique challenges to effectively address issues surrounding drug use, gender and sexual orientation, that are further exacerbated by the avoidance of discussions on these topics. I do not identify myself as a person who use drugs, therefore do not have lived experience. I remain cognizant of my personal biases, and I hope to do well to continue engaging in meaningful conversations by acknowledging the principles of human rights protection and do no harm. My interest in this work is born out of a desire to rebuild structures of power in ways that make room for people on the margins- PWUD and other minorities- to have equal access to opportunities, acquisition of capital, and wellbeing. Date

  19. A P A R T N E R S H I P W I T H P I M M : T H E S E M A R A K S T U D Y A STUDY TO ENGAGE MALAYSIAN PEOPLE WHO INJECT DRUGS (PWID) TO COMPREHENSIVE HIV KEY SERVICES

  20. A study to engage Malaysian People Who Inject Drugs (PWID) to Comprehensive HIV Services (SEMARAK) Comprehensive Treatment and Prevention HIV services consider a patient s social, economic and family priorities as important facets of health Treatment Needle and Syringe Exchange Program Social support and family- focused interventions Medication Assisted Therapy for substance use Improved PWID health outcomes Treatment for HIV and HIV-related comorbidities Sub-program 2 Prevention Families of PWID Optimizing the role of local community-based organizations in linking PWID to appropriate services though a patient navigation model Family focused intervention Sub-program 1 Phase 1: Cross-sectional, respondent-driven sampling study (n = 400) Community-based organization Research Impact: At least 60% of PWID and their family members are engaged to comprehensive HIV services, encompassing health and psychosocial components to improve health outcomes and overall well-being of PWID. Phase 2: Longitudinal, interventional cohort (n = 150) PWID Community -based research (SP1 and SP2) Sub-program 3 Integrated, data management infrastructure Clinical variables from treatment centers Date Your Footer Here

  21. KEY AREAS OF INSAF MURNIS INVOLVEMENT PLANNING AND DESIGN IMPLEMENTATION ENGAGEMENT RESEARCH DISSEMINATION - - Study setting Structuring research flow Questionnaires Training of RAs - Shared resources (material, expertise) Shared decisions - Talks and Research Carnival - Stakeholders meeting with JKN and KK Pandamaran - - - Date

  22. Date

  23. CHALLENGES WITH CBPR Maintaining the boundaries between researcher and researched, academic and activist Tensions between research benefit and potential harm, including obligations to produce benefits for community identified issues

  24. TEAM MEMBERS Abdul Muizz, Persatuan Insaf Murni Siti Rosyati, Persatuan Insaf Murni Joselyn Pang, CERiA Saifullizam, Persatuan Insaf Murni Nur Adilah, Faculty of Education Rohaizat, Persatuan Insaf Murni Farid Aiman, Faculty of Medicine Salahuddin, Persatuan Insaf Murni. Weng H. Siew Faculty of Medicine Ikmal, Persatuan Insaf Murni. Ahmad Idzwan, Community Alyah, Persatuan Insaf Murni Fitri Sharizat, Persatuan Insaf Murni Iqa Mohd Salleh, SPM; CERiA Abqariyah Yahya, SPM Adeeba Kamarulzaman, Dept of Medicine; CERiA Ahmad Shamsuri Muhamad, Faculty of Education Azmawaty Mohamad Nor, Faculty of Education Norfaezah Md Khalid, Faculty of Education Norsafatul Aznin A. Razak, Faculty of Education Nurul Husna Mansor, API Don Des Jarlais, New York University Dr Noor Harzana Harun, KK Pandamaran C Your Footer Here

  25. Q&A

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