Applying a Participatory Action Research Approach to Engage an Australian Culturally and Linguistically Diverse Community around Human Papillomavirus Vaccination: Lessons Learned

"[A] flexible PAR [participatory action research] approach...generated new theoretical knowledge through Cafés and trialled a process to develop and broadly disseminate a co-designed health information website."

Globally, migrant, and culturally and linguistically diverse (CALD) communities face several barriers to human papillomavirus (HPV) vaccination that contribute to health inequities and poorer health outcomes. One participatory research approach used to engage CALD communities around vaccination is participatory action research (PAR). This paper details the lessons learned through a partnership between University of Wollongong and the local Multicultural Health Service to understand how the largest CALD group in New South Wales, Australia, engages with their local school and HPV vaccination programme.

The paper describes the process, which involved regular communication among the team members through regular email, face-to-face, and virtual meetings. All the team members' ideas were openly discussed and considered, with disagreements discussed until a team consensus was reached. Over three and a half years, a total of 31 Macedonian community members, 6 research team members, and 4 local health district stakeholders participated in or were consulted about the project. They followed the usual five phases of PAR, including:

1. Phase 1: Health Needs Identification - November 2019: To identify community health needs and support new knowledge generation from a community point of view, the team organised two World Café events (Cafés) for local Macedonian community members. Cafés are a participatory research method designed around seven (adaptable) design principles to host conversations and create possibilities for action. Though unfamiliar with Cafés, the Multicultural Health Service agreed to trial the method if their cultural safety concerns were addressed (e.g., they requested that CALD Café diversity be limited to one community; mixing CALD groups could compromise participant comfort and open discussion).

Overarching themes that emerged showed that most participants saw themselves and their community as supportive of childhood and adolescent vaccination and had high trust in the school vaccination programme. The team learned that vaccination attitudes and views are passed down through the generations, and tailored health communications are necessary to strengthen positive community attitudes towards vaccines. In a survey, all participants "strongly agreed" (n = 14) that Cafés are useful for consulting with their community about important health topics. Participants agreed they liked how they learned about the health topic (HPV prevention through vaccination) and could converse with others about what they thought. Gocus group participants all agreed that while they liked the Café format, others in their community (e.g., men or more conservative community members) may not speak at Cafés.

2.  Phase 2: Planning for Action - December 2019 to July 2021: At the Cafés, participants asked questions about vaccination, many of which could not be answered that night. The team agreed to develop a question and answer (Q&A) brochure to cover those issues, but pandemic-related social restrictions led to the movement of the Q&A brochure content to an online website. As PAR supports community participants to direct the PAR "action", the first author summarised and presented all the participants' website suggestions and requests for consideration to members of the university-Multicultural Health Service research team. 

3. Phase 3: Action - December 2021 to April 2022: Based on the suggestions made by the Multicultural Health Service partners and the Café participants, the first author developed a social media strategy, which involved maximising opportunities to reach schools with higher Macedonian student bodies. 

4. Phase 4: Evaluating the Action - January to April 2022: The evaluation phase of a PAR action supports a better understanding of the experiential and practical knowledge gained from interacting with people and conducting an action. To evaluate the action (broad engagement and traffic to the website), every dissemination link included a unique Bitly tag. Over the dissemination reporting period (January 27 to April 3 2022), there were 95 new users of the website, which resulted in 106 engaged sessions and a 533% increase in traffic and website engagement compared to the previous year, when no dissemination strategy took place. Over the entire reporting period, two Facebook posts directed 64% (61/95) of website traffic.

5. Phase 5: Project Reflection - November 2022: The PAR reflection phase evaluates the actions and broader social interactions of the project. This reflection informs future actions and changes in practice. The first author shared the project findings in a short online presentation. During the presentation, the first author took breaks to ask attendees their thoughts, insights, suggestions, and reflections about the various project findings and phases. When presented with the Café findings, Multicultural Health Service partners reiterated the known digital literacy barriers for CALD communities that limit their access to and interest in online information. They thought the exception to this was young people, whom they could reach through social media platforms.

The discussion section shares lessons learned, which may contribute to a wider conversation about the benefits, challenges, and practicalities of using PAR to engage a priority CALD community around HPV vaccination. For example, the team did not formally measure or evaluate how (or if) our Cafés and co-designed website impacted participant or community vaccination knowledge, initiation, or acceptance. Whilst from an academic or community outsider perspective, this lack of impact assessment is a limitation of the PAR project, the approach taken was to use freely available online analytic platforms to monitor what channels (e.g., social media, school flyers, or participant networks) that were most used by the local community so as to identify where future efforts should be targeted when disseminating online health information. To maximise the available project resources and time, academic-community partnerships may need to prioritise what information is collected, estimate the potential impact, and balance the reasons to spend time and effort to collect individual-level data (which in the cases of surveys may need to be validated and translated), versus choosing approaches that provide broader community sentiment but less specific community-level data.

The team reflects on how certain partnership decisions potentially compromised their community-engaged approach. For example:
 

• The project empowered Macedonian participants in addressing health literacy access barriers by raising health awareness, improving social learning, fostering culture, and strengthening trust in community health promotion. These project outcomes highlight the broader transformative potential of a PAR approach, where small-scale empowerment can be achieved for both the research team and community participants. However, when the small-scale project is matched against the wider ideals of PAR, it is not clear that the approach achieved social justice and broader system-level impacts.
• Participatory researchers speak about the importance of partnership processes and respecting the knowledge of non-academic research partners. As the university researchers in this project were community outsiders, many team members believe they achieved better partnership results by prioritising the Multicultural Health Service's insider community knowledge around how best, and when, to engage with local community members. For example, by building relationships and providing culturally safe spaces to explore sensitive health topics, community members have opportunities to approach university researchers (e.g., community outsiders) with other important health topics. Team members suggest that "This trust and relationship building will be critical post-COVID-19 as international research shows that confidence in the importance of childhood vaccines has recently dropped..."

The team members conclude by noting that, whilst all PAR projects may follow similar steps and aim for similar ideals, the strategies community members decide on are unique to the different motivations, conditions, contexts, and processes of the community partnership. They write, "To keep improving our PAR approaches, PAR practitioners will need to continuously reflect on and report if the community empowerment and social justice ideals have been met. If we do not do this, it becomes difficult to understand what participatory processes work in what setting and how we can improve for the future..."