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

Authors: Cox, A. and Pritchard, C.

Journal: J Patient Exp

Volume: 7

Issue: 6

Pages: 878-881

ISSN: 2374-3735

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.

http://eprints.bournemouth.ac.uk/35100/

Source: PubMed

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

Authors: Cox, A. and Pritchard, C.

Journal: JOURNAL OF PATIENT EXPERIENCE

Volume: 7

Issue: 6

Pages: 878-881

eISSN: 2374-3735

ISSN: 2374-3743

DOI: 10.1177/2374373520948652

http://eprints.bournemouth.ac.uk/35100/

Source: Web of Science (Lite)

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

Authors: Cox, A. and Pritchard, C.

Journal: J Patient Exp

Volume: 7

Issue: 6

Pages: 878-881

ISSN: 2374-3735

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.

http://eprints.bournemouth.ac.uk/35100/

Source: Manual

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

Authors: Cox, A. and Pritchard, C.

Journal: Journal of patient experience

Volume: 7

Issue: 6

Pages: 878-881

eISSN: 2374-3743

ISSN: 2374-3735

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.

http://eprints.bournemouth.ac.uk/35100/

Source: Europe PubMed Central