Seeking normality: Parents' experiences of childhood stroke.
Access to Information
Activities of Daily Living
Adolescent
Adult
Child
Child, Preschool
Continuity of Patient Care
/ statistics & numerical data
Disabled Children
/ psychology
England
/ epidemiology
Female
Health Knowledge, Attitudes, Practice
Health Services Needs and Demand
Health Surveys
Humans
Infant
Infant, Newborn
Male
Middle Aged
Parents
/ education
Physical Therapy Modalities
/ statistics & numerical data
Qualitative Research
Quality of Life
School Health Services
/ statistics & numerical data
School Teachers
Social Support
Stroke
/ epidemiology
Stroke Rehabilitation
/ psychology
caregivers
needs
qualitative
stroke
Journal
Child: care, health and development
ISSN: 1365-2214
Titre abrégé: Child Care Health Dev
Pays: England
ID NLM: 7602632
Informations de publication
Date de publication:
01 2019
01 2019
Historique:
received:
24
05
2018
revised:
20
08
2018
accepted:
16
09
2018
pubmed:
27
9
2018
medline:
19
12
2019
entrez:
27
9
2018
Statut:
ppublish
Résumé
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. 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. 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. 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.
Sections du résumé
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.
Types de publication
Journal Article
Research Support, Non-U.S. Gov't
Langues
eng
Sous-ensembles de citation
IM
Pagination
89-95Informations de copyright
© 2018 John Wiley & Sons Ltd.