This blog was written by Cristyana Farias.
Research plays an important role in shaping how we understand fetal alcohol spectrum disorder (FASD). It can influence services, supports, policies, funding, and public awareness. However, research is most meaningful when it reflects the real needs and priorities of the people it is intended to support.
For FASD research, this means listening to individuals with FASD, caregivers, families, service providers, clinicians, researchers, and community partners. These voices offer knowledge that can be missed through academic literature alone. Many people in the FASD community encourage the use of terms such as living experience, lived and living experience, or in-home and in-body experience, because these experiences are not only historical; they are ongoing and connected to everyday life.
Community-based research is not about replacing research expertise with community experience, or ignoring questions that researchers bring forward. Rather, it asks researchers to balance academic, clinical, and community priorities so the work is more ethical, useful, and connected to real-world change. This reflects the spirit of CanFASD’s work as a national research network that brings together different voices to improve policy and practice.
Why lived and living experience matters
Individuals with FASD and their caregivers often have deep knowledge of the systems connected to FASD, including health care, education, child welfare, justice, mental health, disability services, and community supports. They know where services work well, where gaps remain, and where families may feel unheard, misunderstood, or blamed—they also have insight into what is practical and directly applicable.
When lived and living experience is included, research questions can become more relevant. Instead of only asking what researchers want to know, community-based research also asks what communities need to know, what problems feel most urgent, and what kinds of supports would make a meaningful difference for individuals and families.
This shift helps move research away from studying people from a distance and toward working with people in a collaborative way. It also helps researchers notice strengths, needs, context, and systems-level barriers that might otherwise be missed.
Questions researchers can ask themselves
- Who is most affected by my research question, and how have their perspectives shaped it?
- What kinds of expertise am I valuing: academic, clinical, caregiving, community, and lived/living experience?
- How could community input change the wording, focus, or usefulness of my research question?
What community-based research can look like
Community-based research means involving community members in meaningful parts of the research process. This can include helping to choose research questions, reviewing study materials, shaping recruitment plans, interpreting results, and sharing findings in ways that people can actually use.
In FASD research, this might mean asking caregivers what topics feel most important to them, inviting individuals with FASD to share what makes research participation easier or harder, or working with advisory groups, community organizations, and service providers who understand the realities of FASD across the lifespan. CanFASD’s resources for caregivers and families can also help researchers understand the kinds of information and supports families may be seeking.
Community-based research does not mean that every person has to be involved in every step. It means researchers make space for meaningful input, respect different kinds of knowledge, and value community expertise alongside academic expertise.
Questions researchers can ask themselves
- Who do I hope this research will affect, and are those people included at more than one stage of the project?
- What community partnerships or advisory structures can be built in from the beginning?
- What decisions can be shared with community partners rather than simply presented to them after they are already made?
Ethical and considerate community-based research
Community participation is more than recruitment. A study can appear collaborative on the surface while still leaving participants with little power, unclear information, or limited control over how their stories and data are used. Ethical community-based research requires researchers to be transparent about the purpose of the work, what participation involves, how information will be used, and what participants can expect after the study ends.
This matters because research has not always treated communities with care. One well-known example is the Havasupai Tribe case, where community members believed their DNA samples were being used for diabetes research, but the samples were later used for other, different studies without community consent. Examples like this remind researchers that consent must be specific, understandable, ongoing, and grounded in trust. It also reminds researchers that community worries are rooted in real-world examples of this trust being betrayed, and that the onus is on researchers to ease those worries.
For FASD research, ethical practice also means recognizing stigma. Participants may worry about being blamed, labelled, or having their experiences taken out of context. Researchers need to create conditions where people know their participation is voluntary, their boundaries will be respected, and their stories will be handled with dignity.
Questions researchers can ask themselves
- How will I explain the study purpose, risks, benefits, and limits in language that is easy to understand?
- How will I check that consent is ongoing, not just collected once on a form?
- How will participants know what they can decline/skip questions, pause the data collection process, or withdraw from the study entirely without penalty?
- What will I do if community feedback challenges my original research plan?
Barriers to taking part in research
Even when people want to take part in research, there can be many barriers. Some people may not hear about research opportunities. Others may not trust researchers because of past experiences where they felt judged, misunderstood, or used. For some families, time, transportation, technology, childcare, work schedules, or caregiving demands can make participation difficult.
Research materials can also create barriers. Long consent forms, unclear language, online surveys, or interviews that take too much time may make participation harder. Some individuals with FASD may need information presented in different ways, extra time to respond, reminders, breaks, or support from someone they trust.
Researchers can also think creatively about methods. Not every question is best answered through a long survey or a structured interview. Participatory methods, including approaches such as photovoice, can create opportunities for participants to share experiences visually and in their own words.
Questions researchers can ask themselves
- What barriers might prevent people from even hearing about my study?
- What accommodations can I offer to reduce the burden of participation?
- Is my method flexible enough for the people I am inviting to participate?
- Could another method (such as visual, conversational, or arts-based approaches) be more accessible?
Making research more accessible
Researchers can reduce barriers by designing studies with accessibility in mind from the beginning. These steps should not be treated as extras. They are part of the preparation needed to make sure a study can meaningfully answer its research question.
Accessibility can include using plain language, offering flexible participation times, providing different ways to take part, sending reminders, allowing breaks, and welcoming support people when appropriate. Plain language means more than using shorter words. It means explaining the study clearly, avoiding unnecessary jargon, checking for understanding, and giving people enough time to ask questions before and during participation.
Accessibility also means thinking carefully about communication. Researchers should avoid deficit-based language and use language that recognizes strengths, needs, context, and supports. This does not mean ignoring challenges. Many people with FASD and caregivers need research, services, and systems to take challenges seriously. A strengths-based approach helps correct the imbalance created when research focuses only on deficits and misses the knowledge that can help people move forward. CanFASD’s Common Messages Guide and language resources offer helpful guidance for respectful communication.
Questions researchers can ask themselves
- What does a participant need to understand before deciding whether to take part?
- How will I check for understanding throughout the study, not only at the beginning?
- Who can review my materials to make sure they are clear, respectful, and accessible?
- How will I describe challenges without reducing people to deficits?
Moving toward shared priorities
One of the goals of community-based FASD research is to better understand shared research priorities. Individuals with FASD, caregivers, clinicians, researchers, service providers, and community organizations may all see different needs. Bringing these perspectives together can help identify research questions that are useful, ethical, and connected to real-world change.
For example, communities may want more research on diagnosis, mental health, caregiver support, school experiences, adult services, stigma, substance use, housing, justice involvement, or culturally safe care. These topics are not separate from everyday life. They shape how people access support and how systems respond to FASD.
Shared priorities do not require everyone to agree on everything. They require researchers to listen carefully, name differences respectfully, and look for areas where research can respond to what matters most.
Questions researchers can ask themselves
- Whose priorities are centered in my project, and whose priorities might be missing?
- How will I balance researcher-driven questions with community-identified needs?
- What would make the findings useful beyond an academic audience?
Research should give back
A key part of respectful research is making sure it gives back to the community. This does not always mean immediate change, but it does mean researchers should be clear about the purpose of the work, how findings will be used, and how participants can learn about the results.
Knowledge translation is one way research can give back. In practice, this might include community presentations, webinars, conference posters, infographics, short reports, social media posts, plain-language summaries, emails to participants, or resources shared through community organizations. The format should fit the audience, not just the researcher’s usual way of sharing information.
Research should not only collect stories. It should help build understanding, improve supports, and create space for people with lived and living experience to shape the future of FASD work. CanFASD’s broader research and resource pages show how research can be connected to tools, information, and knowledge sharing.
Questions researchers can ask themselves
- How will participants and community partners learn about the results?
- What knowledge translation formats will be most useful for the people I hope to reach?
- How will I avoid taking community knowledge without returning something meaningful?
- What will I do after data collection to maintain trust and accountability?
Closing thoughts
When community voices are included, FASD research becomes stronger. It becomes more practical, more respectful, and more connected to the people it is meant to serve. Community-based research reminds us that good research is not only about asking questions. It is about listening carefully, building trust, and working together.
Cristyana Farias is a Master of Arts student in Applied Psychology in the Clinical stream at Laurentian University. Her research interests include FASD, neurodivergence, lived experience, and community-based research. Her thesis focuses on research priorities and participation barriers among individuals with FASD, caregivers, families, and researchers.