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

聆听影子孩子的声音:健康兄弟姐妹经历囊性纤维化和其他危及生命的疾病

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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.

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