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Living with Cystic Fibrosis: The Well Sibling's Perspective

Bluebond Langner, M; (1991) Living with Cystic Fibrosis: The Well Sibling's Perspective. Medical Anthropology Quarterly , 5 (2) pp. 133-152. 10.1525/maq.1991.5.2.02a00020.

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Abstract

While anthropologists have long been interested in how adults perceive illness and death and the role these misfortunes play in social relationships, little attention has been given to the effects of illness and death on children's perceptions and social relationships. In 1985 I began a two‐year study of families of children with cystic fibrosis, a genetic disease marked by slow pulmonary deterioration and a fatal outcome. I was particularly interested in the well siblings. What is it like to grow up with a brother or sister who does not fit comfortably into the culturally prescribed category of “normal, healthy child”? How do well siblings regard the disease from which their sibling suffers? In this article I provide an overview of well siblings' views of both cystic fibrosis and their own sibling's condition at critical points in the disease trajectory. I also consider the effects that these views have on communication among siblings, as well as on healthy siblings' demands for attention. Finally, I suggest some of the implications of these findings for clinical practice. 1991 American Anthropological Association

Type: Article
Title: Living with Cystic Fibrosis: The Well Sibling's Perspective
DOI: 10.1525/maq.1991.5.2.02a00020
UCL classification: UCL > School of Life and Medical Sciences
UCL > School of Life and Medical Sciences > Faculty of Population Health Sciences > Institute of Child Health
URI: http://discovery.ucl.ac.uk/id/eprint/1352504
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