Child: care, health and development · 2026
Parents' Perspectives on Home Care for Children With Nemaline Myopathy: A Qualitative Study.
СтатьяНазвание и аннотация: Перевод в очереди
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Arjona Raúl Merchán, Velarde-García Juan Francisco, Del Cerro Enrique Pacheco, Monroy Alfonso Meneses
Аннотация
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.
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.