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

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.

Psychosocial issues and coping strategies in families affected by long‐chain fatty acid oxidation disorders

“… 21 In addition, healthy siblings of the sick child often become sibling carers and are at risk to become a “shadow child”, who can feel left behind and unseen as families and professionals focus upon their ill sibling. 22 The experienced impact of the child's lcFAOD on family life of the participants of this study is diverse. While the chronic disease was often the cause of conflicts, many caregivers also reported positive experiences with respect to their parental partnership such as better communication.…”

“…A child's chronic disease may disrupt family roles, relationships, function and parental involvement in family caregiving 21 . In addition, healthy siblings of the sick child often become sibling carers and are at risk to become a “shadow child”, who can feel left behind and unseen as families and professionals focus upon their ill sibling 22 . The experienced impact of the child's lcFAOD on family life of the participants of this study is diverse.…”