Successfully reported this slideshow.
We use your LinkedIn profile and activity data to personalize ads and to show you more relevant ads. You can change your ad preferences anytime.

How can community-based participatory research contribute to Program Science

971 views

Published on

How can community-based research contribute to Program Science?

Published in: Education
  • Be the first to comment

  • Be the first to like this

How can community-based participatory research contribute to Program Science

  1. 1. 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
  2. 2. 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
  3. 3. Systemic and dynamic model for the mobilization of knowledge and communities towards an integrated approach to prevention and health promotion © Joanne Otis, 2015, all rights reserved 3
  4. 4. 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). © Joanne Otis, 2015, all rights reserved 4
  5. 5. Systemic and dynamic model for the mobilization of knowledge and communities towards an integrated approach to prevention and health promotion © Joanne Otis, 2015, all rights reserved Cycle 1: Mobilization of knowledge and communities to assess needs and resources (2002-2005) 5
  6. 6. Cycle 1: Mobilization of knowledge and communities to assess needs and resources © Joanne Otis, 2015, all rights reserved 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
  7. 7. © Joanne Otis, 2015, all rights reserved Cycle 1: Mobilization of knowledge and communities to assess needs and resources 7
  8. 8. © Joanne Otis, 2015, all rights reserved 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 Cycle 1: Mobilization of knowledge and communities to assess needs and resources 8
  9. 9. © Joanne Otis, 2015, all rights reserved Cycle 2: Mobilization of knowledge and communities to develop and validate the pilot project (2006-2007) Systemic and dynamic model for the mobilization of knowledge and communities towards an integrated approach to prevention and health promotion 9
  10. 10. Cycle 2: Mobilization of knowledge and communities to develop and validate the pilot project (2006-2007) © Joanne Otis, 2015, all rights reserved • 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
  11. 11. © Joanne Otis, 2015, all rights reserved 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 Cycle 2: Mobilization of knowledge and communities to develop and validate the pilot project (2006-2007) 11
  12. 12. © Joanne Otis, 2015, all rights reserved  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. Cycle 2: Mobilization of knowledge and communities to develop and validate the pilot project (2006-2007) 12
  13. 13. © Joanne Otis, 2015, all rights reserved  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). Cycle 2: Mobilization of knowledge and communities to develop and validate the pilot project (2006-2007) 13
  14. 14. © Joanne Otis, 2015, all rights reserved  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). Cycle 2: Mobilization of knowledge and communities to develop and validate the pilot project (2006-2007) 14
  15. 15. © Joanne Otis, 2015, all rights reserved 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). Cycle 2: Mobilization of knowledge and communities to develop and validate the pilot project (2006-2007) 15
  16. 16. © Joanne Otis, 2015, all rights reserved Cycle 2: Mobilization of knowledge and communities to develop and validate the pilot project (2006-2007) 16
  17. 17. © Joanne Otis, 2015, all rights reserved Cycle 3: Mobilization of knowledge and communities to support scale-up (2008-2011) Systemic and dynamic model for the mobilization of knowledge and communities towards an integrated approach to prevention and health promotion 17
  18. 18. Cycle 3: Mobilization of knowledge and communities to support scale-up (2008-2011) © Joanne Otis, 2015, all rights reserved 18
  19. 19. © Joanne Otis, 2015, all rights reserved  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. Cycle 3: Mobilization of knowledge and communities to support scale-up (2008-2011) 19
  20. 20. © Joanne Otis, 2015, all rights reserved ** 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) Cycle 3: Mobilization of knowledge and communities to support scale-up (2008-2011) 20
  21. 21. © Joanne Otis, 2015, all rights reserved 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) Cycle 3: Mobilization of knowledge and communities to support scale-up (2008-2011) 21
  22. 22. « 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… © Joanne Otis, 2015, all rights reserved Cycle 3: Mobilization of knowledge and communities to support scale-up (2008-2011) 22
  23. 23. 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 Cycle 3: Mobilization of knowledge and communities to support scale-up (2008-2011) 23
  24. 24. 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 © Joanne Otis, 2015, all rights reserved Cycle 3: Mobilization of knowledge and communities to support scale-up (2008-2011) 24
  25. 25. © Joanne Otis, 2015, all rights reserved English version is currently being translated Cycle 3: Mobilization of knowledge and communities to support scale-up (2008-2011) 25
  26. 26.  Mobilizing community workers and WLHIV towards a common project  Sharing knowledge and experiences  80-90 participants from different regions of Quebec (community workers/WLHIV) © Joanne Otis, 2015, all rights reserved Cycle 3: Mobilization of knowledge and communities to support scale-up (2008-2011) 26
  27. 27. • « 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 © Joanne Otis, 2015, all rights reserved Cycle 3: Mobilization of knowledge and communities to support scale-up (2008-2011) 27
  28. 28.  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 © Joanne Otis, 2015, all rights reserved Cycle 3: Mobilization of knowledge and communities to support scale-up (2008-2011) 28
  29. 29. © Joanne Otis, 2015, tous droits réservés Cycle 3: Mobilization of knowledge and communities to support 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
  30. 30.  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. © Joanne Otis, 2015, all rights reserved Cycle 3: Mobilization of knowledge and communities to support scale-up (2008-2011) 30
  31. 31. "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!) © Joanne Otis, 2015, all rights reserved Cycle 3: Mobilization of knowledge and communities to support scale-up (2008-2011) 31
  32. 32. From Mali to Quebec, cultural adaptation of PLURIELLES, a program aimed at improving the emotional and sexual health of WLHIV © Joanne Otis, 2015, all rights reserved Cycle 3: Mobilization of knowledge and communities to support scale-up (2008-2011) 32
  33. 33. Cycle 4: Mobilization of knowledge and communities to support the sustainability of the project (2011- …) © Joanne Otis, 2015, all rights reserved Systemic and dynamic model for the mobilization of knowledge and communities towards an integrated approach to prevention and health promotion 33
  34. 34. 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 © Joanne Otis, 2015, all rights reserved 34
  35. 35. 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 © Joanne Otis, 2015, all rights reserved 35
  36. 36. More on the model... © Joanne Otis, 2015, all rights reserved 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
  37. 37. Partners © Joanne Otis, 2015, all rights reserved 37
  38. 38. Thank you! Correspondence otis.joanne@uqam.ca Questions, comments, thoughts? © Joanne Otis, 2015, all rights reserved 38

×