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Hearing the Voice of a Shadow Child: Healthy Siblings Experience of Cystic Fibrosis and Other Life-Threatening Conditions.

Cox, A. and Pritchard, C., 2020. Hearing the Voice of a Shadow Child: Healthy Siblings Experience of Cystic Fibrosis and Other Life-Threatening Conditions. Journal of Patient Experience, 7 (6), 878 - 881.

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DOI: 10.1177/2374373520948652

Abstract

Cystic fibrosis (CF) is a chronic, life-threatening disease, similar to other chronic life-disrupting pediatric conditions, and this creates physical and psychosocial problems for parents and the healthy sibling/s of the sick child, who often become sibling carers. It is feared that, despite good intentions, professionals fail to hear the authentic voice of those intimately involved, especially these sibling carers, who can feel they became a "shadow child." This study is a partnership between an academic and a former CF sibling carer, who wrote a "fairy story" for his children about the Uncle they never knew. It is an effort to hear the "voice of shadow children" who can feel left behind and unseen as families and professionals focus upon their ill sibling.

Item Type:Article
ISSN:2372-0247
Uncontrolled Keywords:caregiving ; medical education ; patient feedback ; patient perspectives/narratives ; patient/relationship centered skills ; relationships in health care
Group:Faculty of Health & Social Sciences
ID Code:35100
Deposited By: Unnamed user with email symplectic@symplectic
Deposited On:25 Jan 2021 15:25
Last Modified:27 May 2021 07:56

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