The Experience of Being a Parent of a Child Who Stutters and Subsequent Involvement in Support Groups: A Narrative Study

INTRODUCTION: Developmental stuttering generally begins after a period of typical fluency and is highly variable in its presentation and persistence. This variability along with the lack of a definitive cause and social stigma often negatively impact both children who stutter (CWS) and their caregivers. However, research on the specific effects of stuttering on the caregiver is quite sparse compared to research into the caregiver experience in other disorders. Additionally, although social support has been identified as a primary protective factor for other caregivers, little evidence exists to show how support groups benefit caregivers of CWS. METHOD: Five parents participated in narrative interviews where they were asked vi to describe their involvement in support groups as well as their overall experience as a parent of a CWS. Interviews were analyzed using a modified version of Carol Gilligan’s Listening Guide. RESULTS: Parents shared many commonalities including their approach to their child’s stutter, therapy experiences, and support group benefits. Support groups provided connection, reduced feelings of isolation, fostered acceptance, and encouraged a shift in parental mindset and attitude away from a focus on fluency toward a focus on communication. IMPLICATIONS: Therapists should support the family alongside the child by providing resources, encouraging and providing social supports, and involving the family in treatment decisions. Therapy should seek to address the social-emotional aspects of stuttering and support effective communication regardless of fluency