Social life experiences of mothers of children with autism spectrum disorder: A phenomenological study


SEZGİN E., GÜVEN G., Ersal H., Dura E.

JOURNAL OF PEDIATRIC NURSING-NURSING CARE OF CHILDREN & FAMILIES, cilt.90, ss.563-573, 2026 (SCI-Expanded, SSCI, Scopus)

  • Yayın Türü: Makale / Tam Makale
  • Cilt numarası: 90
  • Basım Tarihi: 2026
  • Doi Numarası: 10.1016/j.pedn.2026.07.020
  • Dergi Adı: JOURNAL OF PEDIATRIC NURSING-NURSING CARE OF CHILDREN & FAMILIES
  • Derginin Tarandığı İndeksler: Science Citation Index Expanded (SCI-EXPANDED), Social Sciences Citation Index (SSCI), Scopus, CINAHL, EMBASE, MEDLINE, Health Research Premium Collection (ProQuest)
  • Sayfa Sayıları: ss.563-573
  • Gazi Üniversitesi Adresli: Evet

Özet

Purpose: Autism spectrum disorder (ASD) affects not only individuals but also their families, particularly mothers who often assume the primary caregiving role. This study aimed to explore the social life experiences of mothers of children with ASD through a phenomenological approach. Design and methods: The study was conducted with 20 mothers selected through purposive sampling among mothers of children with ASD receiving services at a public special education school. Data were collected through semi-structured interviews and analyzed using thematic analysis. Results: As a result of the analysis, five main themes were identified: restriction of social life, social reactions and stigma, emotional burden, search for solidarity and support, and acceptance and social expectations. The findings revealed that mothers' social participation decreased, they tended to avoid public environments, and their daily lives became largely child-centered. Negative social reactions were found to increase mothers' feelings of loneliness, burnout, and anxiety about the future. However, relationships established with parents who had similar experiences and professional support were considered important coping resources. Conclusions: The findings indicate that mothers' social isolation is related not only to caregiving burden but also to social stigma and insufficient support systems. These findings highlight the need for comprehensive strategies to reduce social isolation and promote family well-being. Implications for Practice: Healthcare professionals, particularly pediatric nurses, should develop family-centered psychosocial interventions for mothers experiencing caregiving-related stress and social isolation while caring for children with ASD. Strengthening inclusive support systems and societal awareness may enhance family well-being. (c) 2026 Published by Elsevier Inc.