The Best Experts : The Narratives of Those Who Have a Genetic Condition  

Oleh:

Petersen, Alan

Jenis: Article from Journal - ilmiah internasional
Dalam koleksi: Social Science & Medicine (www.elsevier.com/locate/sosscimed) vol. 63 no. 1 (Jul. 2006), page 32-42.
Topik: GENETICS; genetic condition; genetic literacy; lay expertion; illness narratives; suppoprt groups; australia

Ketersediaan

Perpustakaan Pusat (Semanggi) Nomor Panggil: SS53.5 Non-tandon: 1 (dapat dipinjam: 0) Tandon: tidak ada

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In recent years, there have been growing expectations about the future benefits deriving from the uptake of genetics knowledge in health care. At the same time, there have been increasing calls to make greater use of patient expertise in treatment. However relatively little is known about the experiences, neeeds and expertise of those who currently have a genetic condition. Drawing on the findings form an australia study involving 21 semi structured interviews with members of support groups which represent those with various genetic conditions (cystic fibrosis, haemochromatosis, haemophilia, and thalassaemia) this article discusses how individuals larn about, live with and manage their condition, and assesses the extent to which their experiences differ from those with other chronic illness conditions. It argues that while experiences if individuals who have a genetic condition would appear to be similar in many respects to those with other chronic illnessses, they tend to encounerparticular challenge in managing their condition due to its inheritable nature.

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