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

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.