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"Have we done enough?" A cross-condition exploration of the experiences of parents caring for a child with an appearance-affecting condition or injury

Thornton, Maia; Harcourt, Diana; Deave, Toity; Kiff, James; Williamson, Heidi

"Have we done enough?" A cross-condition exploration of the experiences of parents caring for a child with an appearance-affecting condition or injury Thumbnail


Authors

Maia Thornton maia.thornton@uwe.ac.uk

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Toity Deave Toity.Deave@uwe.ac.uk
Associate Professor in Child & Family Health

James Kiff James.Kiff@uwe.ac.uk
Occasional Associate Lecturer - HAS HSS

Heidi Williamson Heidi3.Williamson@uwe.ac.uk
Associate Professor in Applied Health Research



Abstract

Children and young people (CYP) with appearance-affecting conditions/injuries report common pervasive psychosocial difficulties, regardless of cause, nature or extent of their visible differences. Parents or carers can also experience psychosocial difficulties and challenges specific to having CYP with a visible difference. Current literature is confined to exploring condition-specific concerns of parents, typically in more prevalent appearance-affecting conditions/injuries, whilst the experiences of parents of CYP with other visible differences are unknown. Thirty-one interviews (parents n =20, health and support professionals n =11) and 4 parent focus groups (n=25) were conducted. Three overarching themes were constructed: “Appearance does(n’t) matter” describes the impact of having a child with a socially undesirable appearance; “Being ‘battle’ ready” reflects parents’ desire to arm their child with resources to manage challenges, whilst “Walking the tightrope” reflects parents’ lack of clarity about how best to approach this. Findings highlight shared and common cross-condition psychosocial difficulties among parents and carers.

Citation

Thornton, M., Harcourt, D., Deave, T., Kiff, J., & Williamson, H. (in press). "Have we done enough?" A cross-condition exploration of the experiences of parents caring for a child with an appearance-affecting condition or injury. Developmental Neurorehabilitation, https://doi.org/10.1080/17518423.2021.1901150

Journal Article Type Article
Acceptance Date Mar 5, 2021
Online Publication Date Apr 14, 2021
Deposit Date Mar 8, 2021
Publicly Available Date Jun 2, 2021
Journal Developmental Neurorehabilitation
Print ISSN 1751-8423
Electronic ISSN 1751-8431
Publisher Informa Healthcare
Peer Reviewed Peer Reviewed
DOI https://doi.org/10.1080/17518423.2021.1901150
Keywords Visible difference, Parents, Families, Qualitative, Healthcare professionals
Public URL https://uwe-repository.worktribe.com/output/7190836

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