Engaging Families in Research

By Carrie Davenport, PhD and Tina Pudelski, Ohio H&V

When Caelan was diagnosed through her newborn hearing screening, we were fortunate to have a strong early intervention experience, where we were first introduced to the world of research opportunities. Over the past 15 years, we have participated in several research projects through many great organizations and institutions, and every opportunity that we have taken part in has helped us to feel more informed, engaged, and empowered. 

The majority of studies conducted with deaf and hard-of-hearing (DHH) children use a traditional approach, one that is directed by scientists. Researchers develop research questions, determine methods for collecting and analyzing data, interpreting results, and disseminating findings. This approach has produced important knowledge about how DHH children develop language, cognition, and social-emotional skills. It has also produced important knowledge about families’ interactions with early hearing detection and intervention (EHDI) systems.

There is another approach to research, one called Community Based Participatory Research (CBPR). This research engages and encourages input from community partners in each step of the process. Recently, a small group of parents with DHH children participated in a CBPR project we will describe here.  

CBPR is well-suited for tackling some of the challenges that families with DHH children face, such as reducing barriers to early intervention services given the complex and often intersectional issues specific to families of DHH children in addition to existing family challenges (e.g., job loss, financial instability). CBPR is a collaborative research approach. Collaboration is a relationship-based endeavor requiring time to develop a sense of trust between community partners and researchers. Researchers must listen and learn from communities to develop an understanding of their challenges, strengths and resources.  

Several foundational principles lie at the heart of CBPR. The approach recognizes the unique strengths of community partners, such as families of DHH children and DHH adults. CBPR elevates community knowledge and depends on a shared power structure between researchers and communities. This approach is also frequently used to address inequities in health outcomes in public health research. CBPR is about doing research with communities rather than only conducting research on or about communities. The broad goal is to improve the “3 R’s” of research: (1) rigor – Are we practicing and promoting “good science”? (2) relevance – Are we asking the right research questions? and (3) reach – Are we disseminating findings to a broad audience and translating science into useful tools?

Our project goal was to develop the capacity for parents/caregivers of DHH children to engage in research. To achieve this goal, we carried out the following: 

• Formed a family advisory council by convening a group of parents/caregivers of DHH children and early intervention providers. 
• Provided training to the council to give them the tools to engage in the research process. 
• Held a series of iterative discussions to generate, refine, and prioritize research topics.
• Developed and disseminated a research agenda reflective of what is most important to families of DHH children that other researchers and parent groups might use as future directions for CBPR projects.  

Our process 

In the first year, we invited ten parents to participate in a Family Advisory Council and provided them with a three-part educational training:

1. Ohio EHDI 101
2. Research fundamentals (“how research works”) and
3. An overview of the kinds of research studies previously done with DHH children and their families. During the second year, the project lead (C.D.) ran a series of focus-group style discussions with the council. With this background, the council worked together to generate a list of research topics related to parenting a DHH child and then prioritized the topics into a final list. 

Who served on the Family Advisory Council 

The Family Advisory Council included parents from a range of backgrounds (i.e., Black/African American, Asian, and White), educational levels (ranging from high school graduate to graduate/professional degree), and hearing status (i.e., hearing, Deaf, hard-of-hearing). In addition, several members had DHH children with additional disabilities or diagnoses. Families used a range of communication methods, including only spoken language to families who use some signs with their children and families using American Sign Language (ASL) and English. We invited two early intervention providers, each with over 20 years of experience working with families of children who are DHH, to provide input based on the families they serve. The project lead (C.D.), a researcher with a background in deaf education, family support, and a co-founder of Ohio Hands & Voices, facilitated all meetings and discussions. Parents were recruited mostly through personal connections.  

Based on our focus group style discussions, this particular group of parents agreed on the following research topics: 

1. Support for families new to the community. Families are often overwhelmed in the beginning of their journey. More studies are needed that focus on how parent-to-parent support can impact families new to the community. 
2. Peer social interactions. Peer interactions can be a valuable experience for DHH children. More work is needed to understand how social interactions develop and how they can support language and other developmental outcomes.  
3. ASL support. For families who are interested in learning and using ASL with their DHH children, support is inconsistent. Some early intervention providers do not have the competency to support families. Not all speech-language pathologists receive training that allows them to fully support DHH children in acquiring ASL. While not all families choose to use ASL, more research is needed to identify ways to effectively support families who do.  
4. Parent and child self-efficacy and empowerment. Parent and child self-efficacy and empowerment can positively influence developmental outcomes, including social-emotional development. More research is needed to understand the specific mechanisms of these findings. 
5. Access to deaf and hard-of-hearing role models. DHH children need to see and interact with DHH role models. More research on the impact that role models can have on self-efficacy, empowerment, and outcomes is needed to support a child’s sense of identity and community.

In conclusion

CBPR served as an excellent approach to expanding our understanding of how DHH children develop, and the kinds of support families need to be successful in facilitating their child’s development. Based on our project, there are multiple pathways forward for research topics. We hope that researchers, family-based organizations, and DHH adults will utilize this work as a jumping-off point to pursue their own projects using a CBPR approach. As Tina notes, after each experience, we take away new hope that the information gathered will go on to help others.  Our bonus that we take with us will always be the people that we have met, from researchers to fellow parents. We added so many strong friends and advocates to our village.

Interested in learning more about CBPR? Check out the following resources.

Academic journal articles:

• Participatory research methods–Choice points in the research process. Authors: Lisa Vaughn, Farrah Jacquez. Published in: Journal of Participatory Research Methods
• Partnering with insiders: A review of peer models across community‐engaged research, education and social care. Authors: Lisa M. Vaughn, Crystal Whetstone, Alicia Boards, Melida D. Busch, Maria Magnusson, Sylvia Määttä. Published in: Health & Social Care in the Community
• The three Rs: How community-based participatory research strengthens the rigor, relevance, and reach of science. Authors: Carolina Balazs, Rachel Morello-Frosch. Published in: Environmental Justice
• For more, go to https://www.pcori.org/engagement-research/engagement-resources. Check out Building Effective Multi-Stakeholder Research Teams and Research Fundamentals.   ~

Editor’s note: Carrie Davenport is the founder of Building Bridges Consulting, LLC and a co-founder of Ohio Hands & Voices. Tina Pudelski is the president of Ohio Hands & Voices.

If you are interested in viewing additional research opportunities they are posted here at Hands & Voices:  https://www.handsandvoices.org/resources/research_opps.htm

H&V Communicator – Spring 2025