A Lifelong Responsibility: A Transcendental Phenomenological Study of Mothers of Children with Disabilities

Raising a child with a disability is a complex and enduring experience that can reshape mothers’ psychological, social, relational, and future-oriented lives. Although qualitative research on maternal caregiving is growing, less is known about how mothers’ concerns about their children’s futures are intertwined with their own life course and how culturally grounded meaning-making shapes this experience. This study aimed to explore the lived experiences of mothers of children with disabilities and the meanings they attribute to motherhood and their children’s futures. A qualitative study guided by Moustakas’s transcendental phenomenological approach was conducted with six mothers of children with disabilities. Participants were selected through criterion sampling. Data were generated through an online focus group and analyzed by distinguishing individual experiential accounts from interactional contributions, followed by phenomenological synthesis across participants. Four interrelated dimensions emerged: finding new meaning in life, motherhood at the center of life, living with uncertainty, and the need to be seen and understood. Mothers described motherhood as an enduring responsibility involving personal transformation, self-deprioritization, emotional demands, and continuous adaptation. Major concerns involved education, independent living, and life after parents. Understanding, acceptance, and peer support were also emphasized. The findings highlight the need for family-centered psychosocial services that address mothers’ well-being alongside their children’s developmental needs, including peer support and future-oriented planning.