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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
Heath, Gemma Shaw, Karen Baldwin, Lydia
Heath, Gemma
Shaw, Karen
Baldwin, Lydia
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2020-06-30
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Abstract
Transitional care for young people with long-term conditions emphasises 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 care-giving role during their child’s transition to adult services, to identify parents’ needs and 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 mid-life adults. Finding a balance between protecting immediate health and long-term wellbeing was a major theme. Participants called for improved support, including improved service organisation. 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.
Citation
Heath, G., Shaw, K. and Baldwin, L. (2020) “A confident parent breeds a confident child.” Understanding the experience and needs of parents whose children will transition from paediatric to adult care, Journal of Child Health Care. https://doi.org/10.1177/1367493520936422
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Journal article
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en
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This is an accepted manuscript of an article published by SAGE in Journal of Child Health Care on 30/06/2020 which can be accessed via the following link: https://doi.org/10.1177/1367493520936422
The accepted version of the publication may differ from the final published version.
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1367-4935