Introduction by Croakey: The devastating impacts of COVID-19 are being keenly felt in south and south-west Sydney. It’s here that a large proportion of the city’s culturally diverse population live, highlighting the importance of culturally appropriate and well-targeted information and support.
In Croakey last week, Atem Atem, president of the NSW Refugee Communities Advocacy Network (RCAN), criticised the NSW Government’s “us and them” COVID messaging, saying the approach had sparked fear and anger within the diverse communities living in the Sydney suburbs with tighter lockdown restrictions.
And speaking on the How Science Matters podcast this week, the Burnet Institute’s Professor Margaret Hellard noted the financial impact that COVID-19 testing and vaccination may have on casual workers.
“If you’re in casualised work, [the time taken to have a COVID test or vaccination may] cost you a large amount of your income. Why wouldn’t we support somebody who needs that?” she said. “It’s not a bribe; it is appropriately reimbursing people for their time to participate in a public health response.”
A team of NSW researchers has recently surveyed culturally and linguistically diverse communities to better understand their key challenges and have called for community-led, comprehensive local approaches to give “communities a voice, and the necessary resources to put ideas into action”.
Dr Danielle Marie Muscat, Dr Julie Ayre, Olivia Mac, Dana Mouwad, Dipti Zachariah Una Turalic, Yvonne Santalucia, Gordana Vasic and Professor Kirsten McCaffery outline their findings below.
Danielle Marie Muscat and colleagues write:
Too often, research excludes the voices of culturally and linguistically diverse communities. This is true of COVID-19 research both in Australia and internationally. But as the recent outbreak continues to plague Sydney’s most diverse Local Government Areas, the necessity of hearing those voices is thrown into stark relief.
Our recent COVID-19 survey included more than 700 people living in Greater Western Sydney who speak a language other than English at home. It is the largest survey of its kind in Australia to date, enabled through partnership with Western Sydney, South Western Sydney and Nepean Blue Mountains Local Health Districts’ Multicultural Health and Healthcare Interpreter services, community engagement, and recruitment and data collection methods that were necessarily inclusive.
The survey was translated into 11 languages*, participants were engaged via a range of recruitment methods (including through community champions, events, and networks), and there were several ways to complete the survey, including with the support of an interpreter or bilingual health officer.
We listened. And this is what we heard.
Diverse information sources
The most common way to find out about COVID-19 reported in our survey was through official Australian sources and public broadcasters (such as Australian government websites and healthcare professionals; 60%, 421 people).
While encouraging, our recent review, which has been accepted for publication in the Medical Journal of Australia, shows that official government information about COVID-19 is often too complex to read, understand and act upon, particularly information about vaccines.
It is unsurprising then that participants in our study who were older, had poor English proficiency and/or lower health literacy reported significantly greater difficulty finding easy to understand COVID-19 information in English compared to others.
We also found a huge diversity of sources used by community members, beyond official government websites. In addition to official sources, people also turned to commercial TV and news articles (59%, 417 people) and social media (56%, 397 people), with wide variation based on several factors.
Older participants (>70 years), for example, more often relied on friends or family living in Australia (66%, 47 people), community information sources (including religious or community leaders, community TV and radio) (59%, 42 people), as well as information from overseas (59%, 42 people).
Oliver Slewa, CEO and Founder of the Shayna Humanitarian Services Inc, told Croakey:
The study has helped us recognise that it is important to continually publish and distribute health information to culturally and linguistically diverse communities, guided by an understanding of the way in which information is accessed by various community groups.”
Translated resources miss mark
Participants with low health literacy obtained most of their information in a language other than English.
However, we know that translated information and communications about COVID-19 have been sparse, intermittent and often low quality. The original source materials in English are too complex, official translators are not used, and/or translations are not reviewed to make sure the information makes sense.
Participants in our study echoed these sentiments, reinforcing that “currently there is too much information available that is badly translated and not targeting my community appropriately … It is written for [the] highly educated and it is too wordy”.
Testing, vaccination intentions
We also explored testing and vaccination intentions. From 21 March to 9 July 2021, when the survey was conducted, three quarters of participants (77%, 546 people) responded that they would ‘get tested no matter what’ if they developed COVID-19 symptoms in the next four weeks.
The most common barrier to testing was concern about infection at the testing clinic (26%, 42 people), followed by concerns that testing was painful (25%, 41 people).
On average, 53% of participants (375 people) said that they would get a COVID-19 vaccine if it was recommended to them, 29% (205 people) indicated they were not sure, and 18% (127 people) responded that they would not get the vaccine.
Of the 335 participants who reported not wanting or feeling hesitant about the vaccine, the top barriers were concern about vaccine side effects and vaccine safety, with an additional 12% (38 people) saying that they needed more information before deciding.
Turning to the impacts of COVID-19, more than one quarter of participants reported feeling nervous or stressed most or all of the time, and 22 percent felt lonely or alone most or all of the time.
Even before the current COVID-19 outbreak in New South Wales and the imposition of the most extensive restrictions Greater Sydney has seen to date, more than half of those who completed our survey were worried about financial problems and reported difficulty meeting their weekly expenses.
One quarter of participants reported negative impacts on their relationship with their partner or spouse, and the majority of participants with children under 18 years reported that their children were less physically active (64%), had more screen time (63%) and spent less time with friends (69%) as a result of the pandemic.
We consistently observed distinct patterns of COVID-19 impacts for different language groups.
Culturally and linguistically diverse communities are exactly that – diverse. These communities are composed of individuals, families, and other groups with different socio-economic circumstances, migration histories, patterns of health literacy and education, values, expectations and experiences.
A top-down, one-size-fits-all approach is not inclusive, and risks leaving many behind. Policymakers need to understand this diversity and adopt comprehensive local approaches that give communities a voice, and the necessary resources to put ideas into action.
Such community-led strategies can ensure diverse local voices are heard, map local concerns and alliances, and co-design programs that are fit for purpose. In particular, our research highlights the need to meaningfully engage communities at the outset not as an after-thought.
Efforts are needed to work with communities to develop and implement:
- Tailored public communication efforts that meet the needs of people in the community and resources to establish, support and strengthen community-based communication channels including through bilingual/bicultural health workers.
- Innovative solutions to ensure information shared amongst friends and family is of high quality and accuracy.
- Targeted approaches to COVID-19 vaccine communication and rollout, including but not limited to, accurately translated and simple English communication with ample opportunity for people in these communities to ask questions.
- Interventions and support packages of high standard that respond to the unique psychological, financial and social impacts for each community.
Where to from here?
Governments must commit to support ongoing research with culturally and linguistically diverse communities, with resources to enable effective research partnerships between communities, health and research sectors.
The rhetoric is there. NSW Health’s own policy directive states that it will “encourage research projects to understand evidence gaps for culturally and linguistically diverse consumers and communities”.
Unfortunately, what we are yet to see is action. Limited funding and a lack of centralised infrastructure to date has impacted the type of research being done in Australia. A recent analysis of the current landscape of clinical trials addressing the COVID-19 pandemic in Australia found few non-pharmaceutical trials, no trials on public health communication and limited research including populations at high risk of poor outcomes from COVID-19.
Without funding, our team found creative ways to make this research happen alongside their full-time clinical workloads. Translations were done on an in-kind basis, and recruitment and data collection (including via interpreters, bilingual community educators, and multicultural health staff) were embedded within work plans which were already bursting at the seams.
Gordana Vasic, Manager of the Health Care Interpreter Service in Western Sydney Local Health District, told Croakey:
We made an effort because we believe in research.”
However, the reality is that funding would have enabled faster rollout and faster recruitment through protected staff time and could have opened up opportunities for the inclusion of more language groups and longitudinal data collection necessary to track changes over time.
But, more often than not, these challenges are insurmountable without dedicated research funding, centralised infrastructure and recurrent resourcing of positions within local health districts to implement and support research involving culturally and linguistically diverse communities as equal partners.
Change is needed now to ensure that we can listen meaningfully and make impactful change both in response to COVID-19 and beyond. Communities need to be part of the solution and all efforts made to equip them to contribute effectively.
* Arabic, Assyrian, Chinese, Croatian, Dari, Dinka, Hindi, Khmer, Samoan, Tongan, Spanish
Dr Danielle Marie Muscat, Dr Julie Ayre, Olivia Mac and Professor Kirsten McCaffery are from the Sydney Health Literacy Lab, University of Sydney.
Dana Mouwad, Dipti Zachariah, and Gordana Vasic are from Western Sydney Health District.
Una Turalic is from Nepean Blue Mountains Local Health District.
Yvonne Santalucia is from Southwestern Sydney Local Health District.
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