TITLE:
Lived Experiences of Mothers with Children Suffering from Down Syndrome at Mbarara Regional Referral Hospital, Uganda
AUTHORS:
Kyomukama Rhudovic, Josephine Gbobbo, Olayinka A. Onasoga
KEYWORDS:
Chromosome, Down Syndrome, Emotions, Intellectual Disability, Lived Experiences
JOURNAL NAME:
Psychology,
Vol.17 No.9,
September
30,
2026
ABSTRACT: Globally, an estimated 1.6 to 5.4 million individuals live with Down Syndrome, with each mother’s journey shaped by unique factors like culture, socioeconomic status, and resource access. This study explored the lived experiences of mothers with children diagnosed with Down Syndrome (DS) at Mbarara Regional Referral Hospital in Uganda, a facility serving over four million people in Western Uganda and neighboring regions. A cross-sectional phenomenological design was employed, which utilized a semi-structured, face-to-face interview guide conducted in March 2025 in English and Runyankole to capture the personal narratives of 15 mothers, selected via convenience sampling until data saturation was achieved. Data were collected from the hospital’s paediatric neurological clinic and analyzed thematically, revealing five key themes: emotional experiences, social support and relationships, healthcare experiences, coping strategies and resilience, and hopes and fears for the future. Mothers described initial shock and grief that evolved into acceptance, bolstered by faith and family, yet tempered by persistent stigma and limited healthcare resources. Challenges included long wait times, inadequate equipment, and poor provider communication, while resilience emerged through spiritual beliefs and practical caregiving routines. Hopes centered on the children’s health and inclusion, contrasted by fears of future care and societal rejection. This study highlighted the interplay of cultural resilience and systemic gaps, and offered novel insights into Ugandan mothers’ realities compared to Western contexts. Findings underscored the need for enhanced healthcare training, formal support networks, and stigma reduction initiatives to support these mothers and their children effectively.