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'A confident parent breeds a confident child': Understanding the experience and needs of parents whose children will transition from paediatric to adult care.

Authors :
Shaw KL
Baldwin L
Heath G
Source :
Journal of child health care : for professionals working with children in the hospital and community [J Child Health Care] 2021 Jun; Vol. 25 (2), pp. 305-319. Date of Electronic Publication: 2020 Jun 30.
Publication Year :
2021

Abstract

Transitional care for young people with long-term conditions emphasizes the importance of supporting parents, particularly in relation to promoting adolescent healthcare autonomy. Yet, little practical guidance is provided, and transitional care remains suboptimal for many families. This study aimed to examine how parents understand and experience their caregiving role during their child's transition to adult services, to identify parents' needs, and to inform service improvements. Focus groups were undertaken with parents of young people with brittle asthma, osteogenesis imperfecta, or epilepsy. Data were analysed using interpretative phenomenological analysis. Participants ( n = 13) described how their parenting roles extended beyond what they consider usual in adolescence. These roles were presented as time consuming, stressful, and unrelenting but necessary to protect children from harm in the face of multiple risks and uncertainties. Such protective strategies were also perceived to hinder adolescent development, family functioning, and their own development as midlife adults. Finding a balance between protecting immediate health and long-term well-being was a major theme. Participants called for improved support, including improved service organization. Recommendations are provided for working with parents and young people to manage the risks and uncertainties associated with their condition, as part of routine transitional care.

Details

Language :
English
ISSN :
1741-2889
Volume :
25
Issue :
2
Database :
MEDLINE
Journal :
Journal of child health care : for professionals working with children in the hospital and community
Publication Type :
Academic Journal
Accession number :
32602355
Full Text :
https://doi.org/10.1177/1367493520936422