BACKGROUND
Incidence of stroke in children is low and pediatric stroke rehabilitation services are less developed than adult ones. Young stroke survivors may suffer from long-term impairments and encounter barriers to recovery, as they have a long post-stroke life expectancy. However, there are relatively few studies characterising these impairments, and what factors facilitate or counteract recovery.
OBJECTIVE
To identify short-term and long-term factors that impact recovery from pediatric stroke.
METHODS
This qualitative thematic analysis is based on posts from a population of participants from a UK-based online stroke community, active between 2004-2011. The analysis focused on users who talked about experiences of pediatric stroke, identified by a previous study. The posts were read by three authors and factors influencing recovery from pediatric stroke mapped into four areas: medical, physical, emotional and social, according to the framework proposed by the UK Clinical Guidelines for Stroke in Childhood, using a data driven approach. Factors influencing recovery were divided into short term and long term.
RESULTS
There were 425 posts relating to 52 paediatric stroke survivors. Some stroke survivors posted for themselves whilst others were talked about by a third party (mostly parents, 31/35 mothers). 41 stroke survivors were ≤18 years old and 11 were >18 years old at the time of posting. Medical factors included co-morbidities as a barrier to recovery. Exercise, particularly swimming, was reported to be beneficial in stroke recovery. Speech and language therapy and physiotherapy were also deemed useful, despite the current lack of evidence of their effectiveness in paediatric stroke. Among physical factors, fatigue and chronic pain could persist decades post-stroke, with both reported as a barrier to feeling fully recovered. Tiredness could worsen existing stroke-related impairments. Other long-standing impairments were memory loss, confusion and dizziness. In terms of emotional factors, fear and uncertainty surrounding the future was a short term barrier, while positivity was cited as a major facilitator in recovery both short and long term. Playing and listening to music were facilitators to recovery. Social restrictions (i.e. keeping children at home) were associated with negative emotional effects. Grief and behavioral problems also hindered recovery. Social barriers were loneliness, exclusion, anxiety-triggering events and hidden disabilities not acknowledged by third-parties. A good support network and third-party support facilitated recovery. Educational services were important in reintegrating survivors into society. Participants reported that worrying about losing financial support, such as disability allowances and difficulties in obtaining travel insurance and driving licenses impacted recovery.
CONCLUSIONS
The lived experience of survivors of pediatric stroke includes long term hidden disabilities and barriers to rehabilitation. These present in different settings such as healthcare, schools, workplaces, and driving centers. Greater awareness of these issues by relevant professional groups may help ameliorate them.
CLINICALTRIAL
n/a