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

Title

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

Creator

Shaw K L; Baldwin L; Heath G

Publisher

Journal of Child Health Care

Date

2020

Subject

chronic disease; focus groups; parents; transitional care

Description

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. Copyright © The Author(s) 2020.

Rights

Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).

Citation List Month

November 2020 List

Collection

Citation

Shaw K L; Baldwin L; Heath G, “A confident parent breeds a confident child': Understanding the experience and needs of parents whose children will transition from paediatric to adult care,” Pediatric Palliative Care Library, accessed July 31, 2021, https://pedpalascnetlibrary.omeka.net/items/show/17266.

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