Despite improved survival among children with congenital heart disease (CHD), the risk of psychosocial difficulties remains largely unchanged with an increased emphasis of improving support for parents as a mechanism to optimize outcomes.
Objective
Using qualitative and quantitative methods, the current cross-sectional study examined parents' experiences at the time of their child's diagnosis, what they thought helped their child recover, barriers to support, and identified needs for future models of care.
Method
The sample included 26 parents (22 mothers, 3 fathers, and 1 mother/father pair) of children with CHD, ranging in age between 6 months and 4 years with a mean age of 2 years.
Results
Qualitative results were organized around five themes: (a) They (medical team) saved my child's life, (b) My child is going to be okay, (c) Not out of the woods, (d) Optimizing support for my child and myself, and (e) What still gets in the way. Parents uniformly expressed a need for greater mental health support for their children as well as programs to improve parents' skill and confidence, with no difference between age groups (< 2 years and > 2 years of age). Common barriers to service included distance and time off work.
Conclusion
Parents' experiences informed both acute and long term implications following CHD diagnoses, and highlight current gaps in mental health care. Direction for clinical care and improved intervention opportunities are discussed.
This cross-sectional retrospective clinical research study examines a large group of children followed within a pediatric stroke program and a developmental attention-deficit/hyperactivity disorder (ADHD) clinic at the Hospital for Sick Children, between May 2004 and June 2016. All children with a history of stroke who participated in a neuropsychological assessment between the ages of 4 and 18 years were considered for inclusion. From a sample of 275 participants with a history of stroke, 36 children (13.1%) received a diagnosis of secondary ADHD. Children with secondary ADHD were younger at the time of stroke and more likely to be identified as having a presumed perinatal stroke and persistent seizures than children without secondary ADHD diagnoses. There were no differences in pattern of lesion, size, or laterality between children who developed secondary ADHD and those who did not. Children with secondary ADHD had the lowest scores across all cognitive and academic measures compared to children with stroke-only and developmental ADHD. Findings highlight the added risk of receiving a diagnosis of secondary ADHD following pediatric stroke. Implications for future research and directed intervention are discussed.
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