How can community-based participatory research contribute to Program Science

How can community-based participatory research
contribute to Program Science ?
The example of Pouvoir Partager/Pouvoirs Partagés (PP/PP),
a program developed with, by and for women living with HIV
REACH 2.0 Program Science Symposium
24th Annual Canadian Conference on HIV/AIDS Research, Toronto, 2015
This study was made possible with funding from the
CIHR community-based HIV/AIDS research program
Otis, Joanne, professor, Department of Sexology, UQAM
and the PP/PP and Gundo So partners.
1

Program science and community mobilization
© Joanne Otis, 2015, all rights reserved
• Program science offers a response to the growing
complexity of the epidemic
– Combination prevention, prevention cascade, treatment
cascade, etc.
• The importance of community mobilization has been
recognized within program science
– « Practice informs science and vice versa »
• Program science models are not sufficiently explicit
about how to integrate community mobilization
2

Systemic and dynamic model for the mobilization of knowledge and communities
towards an integrated approach to prevention and health promotion
3

PP/PP : a program aimed at empowerment
• General objective: Offer tools to women living with HIV (WLHIV) on the issue of
disclosure (or non-disclosure) their HIV status.
• Use of various pedagogical methods: exercises to facilitate reflection through
drawing, impact techniques using motion or an object, group discussions.
• Specific objectives:
make a proactive and thoughtful decisions regarding disclosure / non-disclosure
of HIV status in different contexts,
Develop strategies to support decisions to disclose or to keep HIV status private
Be able to better manage difficult situations or negative experiences in the
context of planned or unwanted disclosure
• Nine 3-hour workshops to address the following topics:
the process of adapting to living with HIV;
contexts in which to disclose HIV status or keep this information private;
issues raised by disclosure and non-disclosure
potential strategies (to support disclosure or the decision not to disclose).
4

Cycle 1:
Mobilization of
knowledge and
communities to
assess needs and
resources
(2002-2005)
5

Cycle 1: Mobilization of knowledge and communities to assess needs
and resources
DAILY LIFE ON TREATMENT:
Interactions with health care providers
Biological and clinical side effects
Adherence
Treatment (starting, adapting,
changing stopping)
Social representation of treatment
SOCIAL CONTEXT OF DAILY LIFE:
Socio-economic aspects
Relational aspects
Professionnal aspects
Occupationnal aspects
Legal aspects
Relationships with community
organizations
DAILY LIFE WITH SELF AND PARTNER(S)
(identity-intimacy):
Relationship with self
(feminine identity,body image, health)
Relationship with partner(s)
(affection, sexuality, prevention)
DAILY LIFE IN FAMILY/HOUSEHOLD:
Parental aspirations (desire for
children,,pregnancy)
Relationship to children
(maternal care, health of children)
Relation to immediate and extended
family
HIV
New
treatments
6

and resources
7

DAILY LIFE WITH THERAPIES:
Interactions with health care providers
Biological and clinical side effects
Observance
Treatment (beginning, adaptation,
stop, change)
Representation of medication
SOCIAL DAILY LIFE:
Socio-economic aspects
Relational aspects
Professionnal aspects
Occupationnal aspects
Legal aspects
Relationships with community
organizations
DAILY LIFE WITH SELF AND PARTNER(S)
(identity-intimacy):
Relationship with self
(feminine identity,body image, health)
Relationship with partner(s)
(affection, sexuality, prevention)
DAILY FAMILY AND HOUSEHOLD LIFE:
Parenting projet (child desire,
pregnancy)
Relation to child
(motherness, health of child)
Relation to immediate and extended
family
HIV
New
therapies
DISCLOSURE
and resources
8

Cycle 2:
Mobilization of
knowledge and
communities to
develop and
validate the pilot
project
(2006-2007)
9

Cycle 2: Mobilization of knowledge and communities to develop and
validate the pilot project (2006-2007)
• Establishment of three committees with evolving mandates and composition:
o Monitoring committee:
 composed of researchers (academic and community)
 supervision of the study coordinator
 scientific direction of research and evaluation
 identification funding opportunities
 dissemination and sharing of knowledge.
o Implementation committee :
 composed of executives directors of community organizations (project partners)
 political and decisional role, ensuring the feasibility, implementation, and
sustainability of the project.
o Technical committee:
 composed of WLHIV and community workers with expertise on this topic and acting as
consultants
 operational role to support development of the program (validation of intervention
matrix, help in planning educational activities and holding workshops).
Designing, testing, and validating a pilot project to empower women to
manage the disclosure (or non-disclosure) of their HIV status in
a proactive and though-out manner.
10

Program development guided by Intervention Mapping, a power-sharing
approach that brings together the knowledge of various stakeholders inluding
WLHIV, community organizations, and researchers.
Diverse data collection methods allow for formative evaluation and the
development of an improved version of the PP/PP program
Logbooks after each workshop
Pre- and post-test questionnaires
Focus groups at the end of the program
Implemented in 5 sites in Montreal as a pilot project with the collaboration of
4 community organizations , 38 WLHIV, and 5 community workers
11

 Participant satisfaction is very high (M = 4.39, scale of 1 to 5).
 Pre- and post-test results indicate that PP/PP improves the ability of
women to disclose (or not to disclose, if that is their decision) their HIV-
positive status in a though-out and proactive manner (p = 0.001).
 PP/PP has achieved the objective of helping WLHIV to gain better control
over situations where disclosure arises, contributing to their
empowerment. Given these promising results, the program was a good
candidate for implementation on a wider scale and more rigorous
evaluation.
12

 Difficulties in reaching women who
are isolated.
 Few WLHIV using services of
community organizations.
 Geographical distance (area served
by community organization is large).
 Topic discourages some women from
attending workshops (fear, lack of
interest, etc.).
1. Promotion of the intervention as simply a
group discussion to exchange experiences
and reflect on the topic of HIV status.
2. Diversification of recruitment strategies
(through doctors, pharmacists, CLSCs).
13

 Difficulties in understanding the
activities (complex instructions,
participants with little or no
schooling, first language other than
French, reading difficulties, etc.).
 Difficulties experienced by
community workers and
volunteers related to group
management (gossip, conflicts
between participants, personal
attacks, etc.).
1. A preliminary meeting with future
participants to discuss the program allowed
community workers to confirm
participants’ eligibility and commitment
2. The program was enhanced to be less
structured and more flexible.
3. Small closed groups was identified at the
preferred format (maximum of 4-6
participants).
4. The program was adapted to the needs of
the target population (possibility for one-
on-one intervention, in person or by
phone).
14

Difficulties with mobilizing
participants on a regular basis
(engagement).
Absences and delays (lack of
motivation, poor health, daily
preoccupations, etc.).
Needs other than those related
to the issue of disclosure that
participants wished to discuss at
the workshop.
Beyond acquiring strategies for
managing disclosure / non-
disclosure, participants felt the
need to reduce isolation and
share experiences.
1. Incentives were offered to participants : meals,
transportation, childcare expenses, financial
compensation $$$.
2. Workshops were offered based on a schedule
that suited participants.
3. Support was provided to participants after each
workshop.
4. Format of workshops could vary (weekly,
intensive weekend, "lodge" formula )
5. Workshops were facilitated by a trained
community worker and volunteer who had
previously completed the program.
6. More time was included for discussion among
participants (e.g. to share experiences of living
with HIV).
15

16

Cycle 3:
Mobilization of
knowledge and
communities to
support scale-up
(2008-2011)
17

Cycle 3: Mobilization of knowledge and communities to support
scale-up (2008-2011)
18

 Training : Training was planned and offered in collaboration with some of the WLHIV
who participated in PP/PP (2006-2007) and with the « Women’s Committee » of the
Coalition des organismes communautaires québécois de lutte contre le sida
• During an « Outillons-nous » training session
• October 2008
• Community workers / volunteers / WLHIV from 17 community organizations and institutions in the
province of Quebec
• A total of 26 women participated to the training
 Data collection (October 2008 to November 2008) :
• A total of 26 women who participated in the provincial training completed a pre-test self-
administered questionnaire and participated the evaluative plenary session.
• 21 completed the post-test self-administered questionnaire.
 Analyses :
• Nonparametric tests (t-test) were performed to compare the difference between the pre-test and
post-test scores of the experimental group.
• Thematic content analysis was used to analyze the content of the evaluative plenary session.
scale-up (2008-2011)
19

** p<0,001
Scale varying from (1) totally disagree to (7) totally agree
** p<0,05
5.34
5.71
5.43
6.13
 After the training session, the level of satisfaction among participants was high (M = 6,15)
scale-up (2008-2011)
20

In 2009-2010, 84 WLHIV (15 organizations) were recruited from different
regions of Quebec.
A mixed design was implemented to evaluate program effects: pre-test,
post-test, and follow-up, participant focus groups, logbooks completed by
community worker and study coordinator.
Pre-Experimental Design
Experimental group O1 (n=84) X O2 (n=68) O3 (n=55)
scale-up (2008-2011)
21

« This allowed me to equip myself, and to meet and share with other women living the same
things as me. » (Charlotte, Quebecker, 30-39 years)
« It gave me courage and self-esteem. I know to whom, where and when to disclose or not.
This encouraged me to continue attending the support group, organizations, etc. » (Simone,
Congolese, 40-49 years)
« Before, I thought I had to tell everyone but it allowed me to know to whom I really could
say it, and how. » (Marie, Burundian, 20-29 years)
« I’m in less of a hurry to disclose, I take my time, I question it further and I ask myself if it’s
necessary that this person know my HIV status and especially, how to not make it that I’m a
liar if I don’t disclose. » (Dominique, Quebecker, 40-49 years)
« When I plan a disclosure, I am calmer, less stressed to get it over with quickly. The fact
that everything does not happen exactly as I expected does not matter because I have a
sense of control. » (Lucie, Vietnamese, 40-49 years)
 What participants had to say about the effects of the program…
scale-up (2008-2011)
22

Medium-term effects of the program (n=55)
Scales range from 1 « totally disagree » to 5 « totally in agreement »
***p≤0,001
SE = Self-efficacy © Joanne Otis, 2015, all rights reserved
scale-up (2008-2011)
23

Absence or lack of support from management
and peers;
Insufficient human and material resources;
Recruitment difficulties (especially in remote
areas);
Communities already overstretched
Difficulties with respect to the management of
a discussion group (lateness, absence, lack of
discipline);
Turn-over of trained staff;
Methodological compromises;
Lack of mutual recognition of roles (expertise
and knowledge specific to each stakeholder);
No recognition of requirements for
partnership in various institutions,
organizations, and among funders;
A joint project
University-community / community-
community partnership ;
Interaction;
Taking the time (2002-2012);
At the right time (main actors ready);
Beliefs and attitudes towards intervention
(policy makers);
Sense of competence;
Structuring effect of research (timeline, $)
Barriers and strengths
scale-up (2008-2011)
24

English version is currently
being translated
scale-up (2008-2011)
25

 Mobilizing community workers and
WLHIV towards a common project
 Sharing knowledge and experiences
 80-90 participants from different regions
of Quebec (community workers/WLHIV)
scale-up (2008-2011)
26

• « Gundo-So » is a name in « Bambara »
• « Gundo » means confidentiality and « So » means
room or compartment.
 From PP/PP to Gundo So…
Step 0: Assess needs
Step 1: Review matrix (objectives) and logic model
(FIDELITY)
Step 2: Identify theoretical foundations and choose
appropriate methods
Step 3: Develop content of the program
Step 4: Establish conditions for adoption and
implementation
Step 5: Develop evaluation plan
 Cultural adaptation process
scale-up (2008-2011)
27

 Testing phase
 Weekly meetings with a Malian anthropologist for monitoring and preparation
for each of the 10 meetings.
 Animation with two groups of 10 women.
 Pilot phase
 Training community workers from six towns and readjusting the guide.
 Animation with 12 groups of 8 women.
 Use of monitoring data on the different tools that were implemented:
logbooks, pre- and post-test questionnaires, plenary meetings.
 Decisions on modifications to the intervention based on participants’ and
community workers’ responses, and production of the final version of the
guide.
 Scale-up and integration in the services is in progress
 Evaluative research is being considered
scale-up (2008-2011)
28

© Joanne Otis, 2015, tous droits réservés
scale-up (2008-2011)
Short term results
A: Perceived support from the other women
B: Capacity to make a free and informed decision regarding (non) disclosure
C: Self-efficacy regarding planning and implementation of strategies to keep the secret
D: Self-efficacy regarding planning and implementation of strategies to share
E: Sense of control over one’s life
F: Sense of being crushed by the weight of the secret
Difference between pre- and post-intervention is significant (p<0,001) on all scales
29

 After participating to the program, women :
 felt encouraged to achieve better adherence to treatment
 felt motivated to encourage their partners to get tested for HIV
 The program has strengthen the bonds of trust between women and the care centre in which they
have participated. The desire to maintain these new relationships has resulted in the creation of a
group that meets to share a sum of money that is given once a month to a member of the group
(TONTINE).
 As for the team of ARCAD-SIDA (decision makers and community workers), activities have helped
strengthen their program evaluation skills and a greater understanding of the challenges and
obstacles of the cultural adaptation of a program.
scale-up (2008-2011)
30

"The program has supported me a lot. I encourage
others to participate."
"This project gives us back our lives."
"One finger cannot hold a rock ! "
" Boloden n’goni kélé tè gabakuru tâ ! "
(Strength in unity!)
scale-up (2008-2011)
31

From Mali to Quebec, cultural adaptation of PLURIELLES, a program
aimed at improving the emotional and sexual health of WLHIV
scale-up (2008-2011)
32

Cycle 4:
Mobilization of
knowledge and
communities to
support the
sustainability of
the project
(2011- …)
33

Cycle 4: Mobilization of knowledge and communities to support the
sustainability of the project (2011- …)
 Implementation of strategies for KT and capacity building
Web portal
pouvoirpartager.uqam.ca
Anthology
Animation guide
Webinars
34

Conclusion
• This example shows that the mobilization of
knowledge and communities can be a powerful
catalyst for effective and sustainable action
• Individual, organizational, and community
empowerment and capacity-building can also be
used to support implementation of more integrated
and complex interventions
• The explicit inclusion and operationalization of this
mobilization process must be included in program
science models
35

More on the model...
CAHR 2015:
Poster EPH41 - Program Science and the
Mobilization of Knowledge and Communities:
Towards an Integrated Model for HIV Prevention
and Health Promotion
Available on August 26th, 2015
36

Partners
37

Thank you!
Correspondence
otis.joanne@uqam.ca
Questions, comments, thoughts?
38

How can community-based participatory research contribute to Program Science

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