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The Illness Narratives of Children and Young People With Spinal Muscular Atrophy: A Scoping Review
Marcela González-Agüero1, Constanza Quezada2, Valentina Turén1
1School of Nursing, Pontificia Universidad Católica de Chile, Santiago de Chile, Chile.
Insights
Children with Spinal Muscular Atrophy (SMA) have their stories often told by parents, highlighting challenges in healthcare access. Patient-centered strategies are needed to improve their health journey.
Area of Science:
- Pediatric Health
- Medical Sociology
- Health Humanities
Background:
- Illness narratives offer insights into pediatric healthcare experiences.
- Spinal Muscular Atrophy (SMA) presents unique challenges for children and young people.
- Understanding patient trajectories is crucial for improving care.
Purpose of the Study:
- To explore illness narratives of children and young people with SMA.
- To examine their healthcare trajectories and the right to health.
- To analyze the stories told about their experiences.
Main Methods:
- A scoping review using a narrative approach.
- Analysis of literature on Spinal Muscular Atrophy (SMA).
- Inclusion of sociocultural and historical dimensions beyond biomedical aspects.
Main Results:
- Twenty-one articles were reviewed, primarily from the Global North.
- Key themes include parents as storytellers, everyday life tropes in SMA, and the right to health.
- Difficulties in accessing medical treatment, information, and healthcare coverage were identified.
Conclusions:
- Children with SMA are often represented by their parents, with limited personal voice.
- A rights-based, intersectional, and family-centered approach is needed to enhance care experiences.
- Further research on the right to health in the Global South and caregiver support is recommended.
Aim(S):
This review seeks to explore the illness narratives of children and young people focusing on their healthcare trajectories; the right to health; and the kind of stories told about them.
Design:
This scoping review adopts a narrative approach to analyse how the illness experience of Spinal Muscular Atrophy is represented in the literature, moving beyond biomedical descriptions to consider sociocultural and historical dimensions. We explore how global and local forces shape everyday life and therapeutic possibilities for people with this condition.
Methods:
Four online databases were used to identify papers published between 2014 and 2024 in English and Spanish. The analysis process was guided by the PAGER Framework.
Results:
Twenty-one articles met the criteria for the review, mainly published in the Global North. Following organisation of Patterns, findings were categorised into three themes: (1) Parents as storytellers of young people's life trajectories; (2) Tropes about everyday life with Spinal Muscular Atrophy; and (3) The right to health as a narrative terrain. Findings show that access to medical treatment, information, and healthcare coverage poses difficulties when navigating the healthcare system with little institutional support.
Conclusions:
The voices of individuals with Spinal Muscular Atrophy are rarely reported, often represented by their parents. There are opportunities to develop strategies that enhance the experiences of children and young people when seeking care, which should have a rights-based, intersectional, and family-centred approach.
Impact:
This review highlights the need to listen to children and young people's voices, offer support to caregivers, and further explore the right to health in the Global South.
Patient Or Public Contribution:
The interpretation of the findings was enriched by the involvement of patients, who participated as advisors for the research team. Their contributions ensured the research remained aligned with concerns and priorities informed by lived experience of the disease.
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