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Parents' Perspectives on Home Care for Children With Nemaline Myopathy: A Qualitative Study
Raúl Merchán Arjona1, Juan Francisco Velarde-García1,2,3, Enrique Pacheco Del Cerro4,5
1Red Cross Nursing School, Research Group in Social Health Care Needs for the Population at Risk of Exclusion, School of Nursing, Red Cross University, Universidad Autónoma de Madrid, Madrid, Spain.
Insights
Caring for children with nemaline myopathy (NM) significantly impacts parents, requiring constant adaptation to the disease and caregiving demands. Coordinated, parent-centered support is crucial for family well-being and sustainable care.
Area of Science:
- Neurology
- Pediatrics
- Psychology
Background:
- Nemaline myopathy (NM) is a rare, childhood-onset neuromuscular disorder.
- It necessitates extensive, long-term home care, placing a substantial burden on families.
Purpose of the Study:
- To explore the lived experiences of parents caring for children with nemaline myopathy.
- To identify the challenges and needs of caregivers in the context of NM.
Main Methods:
- A descriptive phenomenological study was employed.
- Data were gathered through semi-structured interviews with 17 parents in Spain.
- Thematic analysis using Giorgi's method was applied to transcribed interviews.
Main Results:
- Parents face continuous adaptation to unpredictable disease progression and intense caregiving demands.
- Formal support services offer relief but are perceived as unstable, creating uncertainty.
- Caregiving responsibilities significantly reshape parents' work, social life, and daily routines.
Conclusions:
- Parenting a child with NM profoundly transforms family dynamics and individual lives.
- There is a critical need for coordinated, parent-centered support systems.
- Such support is essential for ensuring sustainable care and safeguarding caregiver well-being.
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.
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