Peer-reviewed article

Parents' Perspectives on Home Care for Children With Nemaline Myopathy: A Qualitative Study.

Arjona RM, Velarde-García JF, Del Cerro EP, Monroy AM · 1 Jul 2026

Abstract

Introduction Nemaline myopathy (NM) is a rare childhood-onset neuromuscular disorder requiring long-term home care. Its progression places a significant emotional and physical burden on parents, especially without formal support. Methods A descriptive phenomenological study was conducted with 17 parents of children diagnosed with nemaline myopathy in Spain. Data were collected through semi-structured interviews, transcribed verbatim and analysed using Giorgi's thematic analysis method. Results Four central themes emerged: (1) adapting to the unpredictable changes of the disease, in which parents described the need for continuous adaptation to evolving clinical demands; (2) living under continuous caregiving demands, reflecting the temporal, physical and emotional intensity of uninterrupted caregiving; (3) relief and uncertainty in shared care, where formal support services were experienced as essential yet unstable; and (4) when caregiving reorganizes family life, illustrating how caregiving responsibilities progressively reshaped parents' work, social participation and daily routines. Conclusions Caring for a child with NM profoundly transforms family life. This study highlights the need for coordinated and parent-centered support to ensure sustainable care and protect parents' well-being in their role as caregivers.