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Self-reported needs after pediatric stroke
Anne L Gordon1, Loan Nguyen2, Anna Panton3
1Evelina London Children's Hospital, Guy's & St Thomas' NHS Foundation Trust, UK; King's College London, UK.
Insights
Pediatric stroke survivors and their families report significant unmet needs in health and care, impacting school, leisure, and social life. Addressing these needs is crucial for improving well-being post-stroke.
Area of Science:
- Pediatric Neurology
- Rehabilitation Medicine
- Child Health Services
Background:
- Pediatric stroke significantly impacts children and families long-term.
- Understanding self-reported needs is vital for child-centered interventions.
- Current knowledge on pediatric stroke patient and family needs is limited.
Purpose of the Study:
- To identify and quantify the met and unmet needs of pediatric stroke patients and their families.
- To compare the needs of pediatric stroke survivors with those of adult stroke survivors.
Main Methods:
- A questionnaire adapted from an adult stroke study was used.
- Participants included parents of children (0-18 years) and young people (12-18 years) with ischemic or hemorrhagic stroke.
- Data collected from three UK tertiary pediatric stroke clinics.
Main Results:
- Over two-thirds of participants reported at least one unmet need.
- More than half experienced difficulties with school activities, and over a third with leisure and social relationships.
- Higher neurological impairment correlated with a greater number of needs.
Conclusions:
- Pediatric stroke survivors and their families experience substantial unmet needs across various health domains.
- A needs-based strategy is essential for optimizing health and well-being after pediatric stroke.
- Findings highlight the necessity for tailored support systems for pediatric stroke.
Background:
Pediatric stroke has the potential for long term impact on the lives of children and their families. Child-centred intervention depends on understanding of needs from diagnosis onwards. However, little is known about the health and care support self-reported needs of this population.
Aims:
This study aimed to describe the nature and extent of needs (met and unmet) of pediatric stroke patients and their families and compare these with previously reported adult stroke needs.
Methods:
The questionnaire, adapted from a previously published adult stroke study, was conducted with parents of children who had an ischemic or haemorrhagic stroke between birth - 18 years, and young people with stroke now aged between 12 and 18 years. Participants were recruited from three tertiary pediatric stroke clinics in England. Levels and type of needs, and self-reported neurological impairment were captured. Comparisons of needs was reported descriptively and explored using Chi-square test.
Results:
Of 44 participants (39 parents, 5 young people), over two thirds reported at least one unmet need. Over half had difficulties in school-related activities, and over one-third in leisure activities and social relationships. Participants reported similar nature and extent of need when compared to previously reported adult stroke needs. Higher severity of neurological impairment was associated with higher number of needs.
Conclusions:
Children and young people and their parents have high levels of unmet need across a range of health domains in the months and years after pediatric stroke. This information supports the importance of a needs-based approach to maximising health and well-being.
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