Seeking normality: Parents' experiences of childhood stroke.

BACKGROUND: Incidence of paediatric stroke has been estimated to range from 1.2 to 13 per 100,000 children under 18 years of age. It is a significant cause of long-term morbidity in children with long-term impacts on physical, cognitive, psychological, and social outcomes. However, little is known about the experiences of parents caring for a child with stroke. Such information is needed to inform the development of child- and family-centred care. METHODS: We conducted in-depth interviews with parents of children with stroke. Participants were purposively sampled from three regional specialist services in England, based on the age of the child at stroke onset and time since first stroke. Interviews used a topic guide and were audio recorded and transcribed in full. Thematic analysis was conducted to develop an account that reflected patients' experiences from their own perspectives. RESULTS: Twelve parents participated with five children classified as having no to mild deficits and seven with moderate to severe deficits. Parents were concerned about the effects of stroke on the child's psychological, cognitive, and social well-being. Significant impacts on parents own well-being and on the family were reported. Although most experienced good quality acute care, meeting the child's needs after hospital discharge was problematic, with low levels of awareness of paediatric stroke among professionals and difficulties accessing relevant information and services. Meeting special education needs was variable. Parents were proactive in seeking to establish a sense of normality for the child and themselves. CONCLUSIONS: The findings illuminate a wider picture of paediatric stroke than indicated by clinical outcomes alone. Parents' experiences varied according to the child's needs but also family's situation and geographical location. Particular attention should be paid to co-ordinating services to meet multiple needs after discharge from hospital.

Self-reported needs after 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.