The authors, a mother who has had breast cancer and her daughter (aged 16 yrs) who was born with Beckwith-Wiedemann Syndrome, a rare genetic disorder, propose that a family's ability to cope with the illness of a member is mediated by the degree to which the illness is understood by the family's networks of healthcare, friendship, and extended family. It is stated that factors such as the family member's role, severity and chronicity of the illness, and treatment regimen, have received less attention than other illness factors. The impact of having a poorly or well understood condition is discussed in terms of one's ability to cope and to involve others in coping with the experience of disease. Mother and daughter each describe their own illness experiences and responses to the other's illness in order to reveal differences of experience in terms of how well their illnesses are understood. Three narrative concepts, coherence, closure, and interdependence, are introduced to analyze these experiences and to guide the development of coping strategies to mitigate the daughter's illness-induced isolation. A team ceremony of witnessing and creation to "oppose despair and nourish hope" is described.
Available at: http://works.bepress.com/miranda_worthen/8/