Family Perspectives Research Initiatives: Amplifying the Voices of Families in the Deafblind and CHARGE Communities
The College of New Jersey (TCNJ) is leading two important research studies that highlight the lived experiences of families raising children with complex sensory needs. These projects seek to deepen our understanding of family perspectives, strengthen professional practice, and guide the development of more inclusive supports for children who are deafblind or have CHARGE Syndrome. Together, these studies give voice to families whose insights can inspire change, promote inclusion, and inform the future of education and support for children with sensory and communication differences.
Fathers of Children and Youth with Deafblindness Study
The College of New Jersey is conducting a web-based research study exploring the experiences of fathers of children and youth with deafblindness, ages 3–21. This study seeks to better understand fathers’ perspectives on their children’s school experiences, as well as related factors such as employment, family supports, and engagement in their child’s education.
There is currently very little research focusing specifically on fathers—particularly those of children with disabilities—and this project aims to fill that gap. By sharing their experiences, fathers can help inform future programs, resources, and supports for families and educators.
Participation involves completing a brief 20-minute online questionnaire. All fathers, stepfathers, and father figures of school-aged children (ages 3–21) with deafblindness are encouraged to participate. Responses will remain confidential, and participation is completely voluntary.
For more information or questions about the study, please contact Dr. Nadya Pancsofar at (609) 771-3150.
Notes to My Younger Self Project
The Notes to My Younger Self Project is a global research initiative led by Dr. Jerry G. Petroff and researchers at The College of New Jersey, in collaboration with international partners. The goal of this study is to collect the wisdom, perspectives, and encouragement of parents, grandparents, and guardians of individuals with CHARGE Syndrome, regardless of the child’s age.
By reflecting on their past experiences, participants provide valuable insight into the journey of raising a child with CHARGE Syndrome—offering lessons that can guide newly diagnosed families and inform professionals in education, medicine, and family support. The collective reflections will contribute to a deeper understanding of family resilience, adaptation, and advocacy within the CHARGE community.
Participants are invited to complete a brief online survey consisting of demographic questions and two open-ended reflections, including the opportunity to write a message or “note” to their younger self at the beginning of their parenting journey. Participation takes approximately 20–30 minutes, is voluntary and confidential, and complies with The College of New Jersey’s Institutional Review Board and the EU General Data Protection Regulations (GDPR).
Respondents may also choose to share contact information if they wish to participate in a future interview related to this project.
For questions about this research, please contact Dr. Jerry G. Petroff at petroff@tcnj.edu