Working Together: Collaborative learning inspired by community-based participatory research

Women living with HIV, in their capacity as peer researchers and community advisors, worked with academic and community-based researchers, Child and Family Service workers (CAS), and HIV/AIDS service providers to co-create a training tool aimed at supporting social work professionals and students to more effectively support service users living with HIV. This case illustrates some challenges and benefits of participatory research.

Project

Positive Parenting Pilot Project (P4)

Research Lead

Dr. Saara Greene

Associate Professor, Social Work

Doe Obrien-Teengs, (PhD student)

Gary Dumbrill

Associate Professor, Social Work

Case Contributor

Dr. Saara Greene

Marisol Des Biens

Peer Researcher

Partners

Family and Children Services

Research funded by

Ontario HIV Treatment Network (OHTN)

Impacts

Both students and professionals participating in the training module said they were more confident in providing proper support and care for families affected by HIV/AIDS.

Knowledge Exchange Strategy

Peer researchers; training module; multi-sectoral team; personal stories

Goals

Increase knowledge and awareness of HIV/AIDS in professionals and learners receiving professional training in order to reduce barriers to service for women living with HIV/AIDS.

Activities

  • Selected and shared research findings through personal stories to inspire reflection on professional practice and increase competency.
  • Delivered a 3-hour module to professionals in Child and Family Services and to fourth-year students in the Bachelor of Social Work program, McMaster University.

Keys to making it work

  • Engage people through identifying areas of improvement, and emphasize the positive learning outcomes when people work together.

Resources

Greene, S. (2013). Peer Research Assistantships and the Ethics of Reciprocity in Community-Based Research. Journal of Empirical Research on Human Research Ethics: An International Journal, 8(2), 141–152. http://doi.org/10.1525/jer.2013.8.2.141

Greene, S., O’Brien Teengs D., Dumbrill G., Ion, A., Beaver K., Porter, M., & Desbiens M. (2016). A Community-Based Research Approach to Developing an HIV Education and Training Module for Child and Family Service Workers in Ontario. In H.M. Montgomery, D Badry, D Fuchs (Eds) Transforming Child Welfare. Interdisciplinary Practices, Field Education, and Research (pp. 163-186). Regina, SK: University of Regina Press.

Research exploring the experiences of mothers living with HIV has highlighted the ways in which HIV related stigma and discrimination negatively impact their interactions with Child and Family Services (CAS). HIV-related stigma and discrimination in this context can present a barrier to voluntarily accessing support and, in situations where child welfare involvement has been mandated, exacerbates feelings of distrust and fears about the consequences of disclosing their HIV status to their CAS worker. In response to these findings, Dr. Saara Greene and her community-based research team of peer researchers (mothers living with HIV), social workers, HIV service providers and researchers, identified the need to improve social service professionals’ knowledge of HIV/AIDS and of the services that exist to support people living with HIV. The research team took a mixed method approach to understanding the knowledge and values that underpin social work practices in the context of HIV and developed a three-hour training module to better equip professionals who serve families impacted by HIV/AIDS. The module was delivered to professionals working in child and family service agencies, which are responsible for child welfare and protection in Ontario, and fourth-year Social Work students.

Why Work Together?

The impetus for the P4 project emerged from two studies, the HIV, Housing and Families study and the HIVMothering Study. In these earlier studies, the peer researchers, who were themselves mothers living with HIV, interviewed pregnant women and mothers living with HIV. The findings from both studies provided robust real-life examples of the challenges experienced by mothers living with HIV, and their need to be better served by social work professionals, particularly those based in Child and Family Service agencies. As a community-based researcher, Dr. Greene recognized that in order to ensure that these findings influenced social work practice, any further research would need to include mothers living with HIV and professionals at CAS. Greene refers to this as “Action-oriented” research.

We wanted to make sure to engage mothers living with HIV. So right from the very beginning, before we even broke the ground, we had service providers, researchers, and we asked other people living with HIV to be involved… Essentially we ended up having a large team that wanted to be part of the project before we even submitted the grant.
Saara Greene

The team worked out a committee structure that ensured that these different perspectives informed the final outcome—a training module for social work students and CAS professionals. The activities of the core team—which included mothers living with HIV, university researchers, peer researchers, and university research assistants—were informed and guided by two advisory boards: a positive parenting advisory board and a service provider advisory board. The team developed survey and focus group questions that would result in identifying what practicing and student social workers knew (and didn’t know) about HIV and the ideas they carried with regard to people living with HIV. These candid self-evaluations, together with the input from the advisory boards, informed the final product.

The resulting training module provided students and CAS professionals with new knowledge which they themselves identified as necessary to their practice. In this way, the community-based approach of P4 enhanced the quality and impact of the research—and benefited those involved. The training module includes training on HIV transmission, the social and emotional realities of living with HIV, and socio-legal contexts of HIV in Canada. The training also provides evidence-based information and stimulates learning among researchers, researcher-participants, students, service agencies, and working professionals. Social service organisations benefited from training which will help them provide resources more effectively to the populations they serve.

Social workers recognized that when they say they’re not working with families who are living with HIV it may be because people don’t want to disclose their status and that may be why they [social workers] think that they’re not working with those families. And having that knowledge is really important in the event that they suspect that may be the case. Now, rather than coming at it with ‘I need to deal with this issue’ they come at it with ‘I need to support you in navigating a whole range of services,’

Personal experiences can help address a knowledge gap

The training module includes case studies co-created by mothers living with HIV. The case studies were initiated and developed by the Positive Parenting Advisory Board, and were based, in part, on the experiences that mothers living with HIV have with social workers working in CAS in Ontario. Case studies proved to be one of the more important, if sometimes difficult and provoking, elements of the modules. In their draft form, they sometimes conflicted with the practices that social work professionals believed they engaged in. This was a challenge which the team needed to navigate. They found that facilitating opportunities for in-person connection and conversation helped.

What was most effective was having a mother, living with HIV, talk about her experiences with the child welfare system—more so than the actual case studies. And that’s because that’s so incredibly powerful. And we need to think more deeply about how we convey these case studies …. We don’t want to alienate people through the process.
Saara Greene

How To Make It Work

Bringing together many groups of people with differing perspectives can be difficult and situations where groups may feel singled out for scrutiny can arise – especially when the focus is on transferring knowledge to one group.

“There was a lot of tension with the Children's AID workers, so we had to find a good balance between the good and the bad. We were not saying that Children’s Aid workers were heartless; but it was more so inviting them to partnership to learn together and to grow together.”
Marisol Des Biens

The model that worked for this project was inviting all participants – researchers and students, service providers and service users – into a space of mutual learning where they could share knowledge across divides. These participants interact in other contexts on a daily basis, and it was important for people to set aside their preconceptions. Researcher awareness of the broader contexts and sensitivity to how others may perceive opinions different from their own were important for navigating this new and potentially bumpy terrain. This project was communicated in a way that did not target a single group, but began by identifying an area of growth and working toward solutions collaboratively.

“[I] was there to tell them [students and/or professionals] yes, these bad things did happen; but these good things also did happen … people are trying to help you out, and not put you down.”
Marisol Des Biens

The researchers learned that building relationships was important to creating a safe space for all

Using peer researchers can help to build that safe space, but this brings its own challenges, including ethical ones. In community-based participatory research, where peer researchers and people with lived experience are included in the process, care needs to be taken to ensure that the peer researcher is supported. Peer researchers can be challenged or triggered by listening to difficult or traumatic experiences that recall their own histories. Greene has created support systems and processes for peer researchers to ensure they have resources and support as needed throughout projects. For example, there is a need for regular debriefing with all project members.

When the researcher is from the community being studied, or has lived experiences related to the project there is a need to acknowledge this other layer that impacts the research project… Researchers needed to be mindful to respond to the personal needs of the women before doing research.