The "invisible" world of mothers of children with special needs: a phenomenological study of caregiving experiences and stigmatization.

Purpose

This phenomenological study explored mothers' caregiving experiences for children with special needs, focusing on stigmatization and how they make sense of these experiences in daily life.

Design

AND

Methods

A descriptive phenomenological study was conducted with 15 mothers serving as primary caregivers of children with moderate to severe autism spectrum disorder and/or intellectual disability. Participants were recruited through purposive criterion sampling. Data were collected through semi-structured interviews and analyzed using Colaizzi's seven-step phenomenological method.

Results

Four themes emerged: motherhood experience and identity transformation, caregiving burden and continuous responsibility, stigmatization and social interaction, and future-related concerns and coping. Mothers described caregiving as a continuous responsibility extending beyond physical care and involving substantial invisible labor and mental load related to planning, monitoring, anticipating risks, and coordinating care. Their experiences were marked by physical and emotional exhaustion, social isolation, and stigma. Concerns about their children's future, particularly who would care for them after their death, emerged as a major source of anxiety. Spousal support, peer relationships, and rehabilitation services were identified as important coping resources.

Conclusions

Caring for a child with special needs is a multidimensional experience characterized by invisible labor, constant vigilance, social challenges, and uncertainty about the future. Nursing care should address not only the child's needs but also mothers' psychosocial burden. RELEVANCE TO CLINICAL PRACTICE Nurses should assess mothers' less visible cognitive and emotional caregiving demands, including constant vigilance, care coordination, social restrictions, and future uncertainty, to better understand their needs and provide appropriate support.