This blog was written by Amy Johnson.

Hi, my name is Amy Johnson, and I am a research assistant at the Rehabilitation Centre for Children in Winnipeg, Manitoba. I have had the opportunity to work alongside Dr. Ana Hanlon-Dearman and Dr. Geoff Hicks on the Translating to the Community (T2C) study, which aims to improve diagnosis, treatment, services, and prevention of Fetal Alcohol Spectrum Disorder (FASD).  

Working on this research has been an incredibly rewarding experience. It has given me the opportunity to speak to families from across Manitoba and contribute to research that has the potential to improve outcomes for children with FASD. Like many research projects, however, it also comes with challenges. I wanted to share some of those experiences and the lessons we’ve learned along the way in hope that they may help others conducting community-based research. 

Study Background 

A little background on FASD in Manitoba – the Manitoba FASD Network provides service to all five regions in Manitoba. To receive an assessment, clients need confirmation of prenatal alcohol exposure (PAE). The entire assessment process can be quite long. There are lengthy waitlists for assessment, and clinicians often conduct multiple assessments before the final report. Our study hopes to find new ways to identify FASD early to address these diagnostic challenges. We do this by collecting data through questionnaires and a biological sample. 

Data Collection Using Questionnaires 

Parents/legal guardians complete two questionnaires – one about the parent, and one about the child. These questionnaires are quite long and comprehensive (approx. 45 pages each) and they ask questions to identify challenges that individuals with FASD experience. The data collected will be used to design more effective supports to allow for better treatment and long-term planning.  

Data Collection Using Biological Samples 

The biological sample involves a cheek swab and a saliva transfer. The cheek swab is like a little Q-Tip that you rub inside your cheek to collect cheek cells. We collect the saliva sample by having you spit in a tube. We collect these samples from both the child and biological parent. In situations where it is a foster child, we would only take samples from the child. The samples will be used to look for a “genetic signature”, or marker for FASD that we can see in our DNA. This will help with earlier identification of FASD, especially in situations where PAE is unknown.  

Challenges to Recruitment 

Research has the potential to make a real difference, but it doesn’t always go as planned. Challenges and unexpected obstacles are a normal part of the process. I think it’s important to talk about these experiences openly. Being open about the difficult parts creates opportunities to learn from one another and helps people realize that many others have faced similar struggles. 

With our study, challenges primarily stem from distance, time, and consent.  

Distance 

Families need to come to our clinic in Winnipeg to complete the study, however we are recruiting people from all over Manitoba. Some live in areas that are not road accessible, and many are over a three hour drive. It’s not realistic to expect families to come to us just to participate in the study. But in-person recruitment is necessary as it emphasizes data quality, ensuring that samples are collected and stored correctly, while also allowing us to clarify any questions they may have.   

Time 

Along with the time it takes to get to our clinic, the study itself takes 2-4 hours to complete, depending on how many children participate. The questionnaires are quite long, and you need to complete one child questionnaire for each child, along with the parent questionnaire. The questionnaires are lengthy because they collect information on a broad range of variables, allowing us to examine the many factors that may play a role. Participants are often juggling many commitments, including work and school, which can make it difficult to find a time that works. 

Obtaining consent 

For foster children, we need to obtain consent first from the legal guardian (typically a social worker) before contacting the foster parents. This can be challenging for two reasons: social workers are often difficult to reach by phone, and obtaining the required signed consent forms can take time. While they are generally supportive of the study, their demanding workloads and competing priorities delays or halts recruitment when we don’t receive the signed form back.  

Going Forward 

We’ve heard many suggestions to help address these recruitment challenges. In one phase of the study, the research team went out into communities to conduct the study, rather than having families come to us. Recruitment was much more successful in this stage, so revisiting this idea would help address barriers relating to distance and travel.  

Another idea to prevent delays in signing the consent form from social workers is to catch them at the final diagnostic assessment for the child so they can sign it in person. Overall, using in-person contact and consenting methods seems to be more successful.  

While recruitment challenges can be frustrating, they also provide valuable learning opportunities. By being open and adapting our approach, we can improve participation and ensure that important research continues to move forward. 

Amy Johnson is a Research Assistant at the Rehabilitation Centre for Children in Winnipeg, Manitoba under Dr. Ana Hanlon-Dearman. She received her Bachelors of Science in Genetics at the University of Manitoba and is pursuing a career in Medicine. Her current research focuses on pediatric autism and FASD.