Self-advocates with Down syndrome research the lived experiences of COVID-19 lockdowns in Aotearoa New Zealand

At the beginning of 2018, STRIVE, the New Zealand Down Syndrome Association’s self-advocacy leadership and advisory group, were interested in starting a new advocacy project. They were interested in finding out how to conduct research.

A researcher from Massey University, Franco Vaccarino, developed and presented a series of workshops focussing on different aspects of research. A research team was formed, comprising the six STRIVE members, Zandra and Averill from the NZDSA, and Franco.

Over a period of time, they looked at a few options of possible topics, and STRIVE collectively decided that they wanted to find out how other people with Down syndrome were coping during the lockdowns.

Drawing from previous experience, STRIVE designed a survey with questions they were interested in asking. Franco, Zandra and Averill worked closely with STRIVE to finalise these questions. It must be highlighted that the STRIVE members needed minimal input from Franco, Zandra, and Averill with these questions.

The STRIVE members decided to conduct face-to-face interviews using an interview schedule of structured questions, as they had in the previous project.

After the lockdown, they recruited people with Down syndrome nationally through Special Olympics sports, dance groups, social and leisure clubs, and regional Down Syndrome Associations. A total of 40 participants took part in this study, comprising 20 females and 20 males, ranging in age between 18 and 41.

STRIVE members conducted 36 face-to-face interviews. Four more participants were interested in being part of this research but could not be interviewed face-to-face, so the interview schedule was posted to them.

At a later workshop, STRIVE members received further training on how to analyse data and then had an opportunity to analyse some parts of the data. 

The members conducted a preliminary content analysis using qualitative data, looking for recurring themes and words. Franco and Zandra worked on the thematic analysis and discussed the findings with the STRIVE members.

The key themes highlighted from this research included access to information, emotional experiences, living conditions during lockdown, access to support, employment, and staying connected with others.

The research provided recommendations for government and service providers.

You can read the full published article in the Journal of Applied Research in Intellectual Disabilities (JARID) here:

READ THE ARTICLE

This is an example of a truly inclusive research project where people with Down syndrome initiated a research project, co-designed it, co-researched it, and ultimately were co-authors in a top academic journal.

We know that people with Down syndrome are often research assistants, but we are unaware of any research projects published in an academic journal where people with Down syndrome are co-authors.

Congratulations to the STRIVE members involved in this research project - Duncan Armstrong, Edward Borkin, Alexandra Hewitt, Andrew Oswin, Caroline Quick, and Erin Smith.

“I found it really interesting to be part of the research team and we had a lot of findings. This has now been published in an article by the Journal of Applied Research in Intellectual Disabilities which is known as JARID. I have really enjoyed taking part in this research very much!”

Andrew Oswin

“Research is about finding evidence. Part of our evidence came from interviewing people with Down Syndrome. I learnt how important it is to listen to people with DS, and also how to co-author our research.”

Duncan Armstrong

“The Covid Research was interesting and helpful for others as Covid was a difficult time for everybody especially those with a disability.”

Edward Borkin

“Erin Smith: “As A STRIVE member I helped design research questions, interviewed several people with Down syndrome about their experiences during COVID. I also worked with Franco and STRIVE members to look at research results including number crunching”.”

Erin Smith