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Self-reported needs after pediatric stroke

Gordon, AL; Nguyen, L; Panton, A; Mallick, AA; Ganesan, V; Wraige, E; McKevitt, C; (2018) Self-reported needs after pediatric stroke. European Journal of Paediatric Neurology , 22 (5) pp. 791-796. 10.1016/j.ejpn.2018.06.003. Green open access

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Abstract

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.

Type: Article
Title: Self-reported needs after pediatric stroke
Location: England
Open access status: An open access version is available from UCL Discovery
DOI: 10.1016/j.ejpn.2018.06.003
Publisher version: https://doi.org/10.1016/j.ejpn.2018.06.003
Language: English
Additional information: This version is the author accepted manuscript. For information on re-use, please refer to the publisher’s terms and conditions.
Keywords: Caregivers, Child, Health care utilization, Rehabilitation, Stroke
UCL classification: UCL
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > UCL GOS Institute of Child Health
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > UCL GOS Institute of Child Health > Developmental Neurosciences Dept
URI: https://discovery.ucl.ac.uk/id/eprint/10052151
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