Parental experiences in fostering self-determination for children with congenital deafblindness and co-occurring disabilities

Research focusing on self-determination and individuals with deafblindness (DB) is limited, with self-determination often having a narrow focus for this population. The present phenomenological study explored the self-determination, from their parents’ perspective, of young adults with congenital DB and co-occurring disabilities, with a reflection on both early childhood and current experiences. Eight parents of young adults, aged 18–29 with congenital DB and co-occurring disabilities, were interviewed. The researchers analyzed verbatim transcripts using Moustakas’ modified van Kaam method of thematic analysis, with seven major themes identified from the interview data. Themes included impact of sensory impairments, importance of communication, accommodations and adaptations that facilitated independence during the early years as well as adaptations and accommodations contributing to independence as young adults, helpful therapies, parental flexibility and honoring children’s preferences, and continued supports that foster self-determination.