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Living with Multiple Endocrine Neoplasia Type 1: Decent Care-Insufficient Medical and Genetic Information A Qualitative Study of MEN 1 Patients in a Swedish Hospital
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences. (Caring Sciences)
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences. (Caring Sciences)
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2007 (English)In: Journal of Genetic Counseling, ISSN 1059-7700, E-ISSN 1573-3599, Vol. 16, no 1, p. 105-117Article in journal (Refereed) Published
Abstract [en]

This qualitative study explores how 29 Swedish patients with Multiple Endocrine Neoplasia type 1 (MEN1) experience living with the condition, appraisal of the clinical follow-up program, and surveys their future expectations. The aim of this study is to build knowledge about this patient group in order to provide optimal care. The participants describe physical, psychological, and social limitations in their daily activities and how these limitations influence quality of life. Our findings indicate that a majority of patients have adjusted to their situation, describing themselves as being healthy despite physical symptoms and treatment. The participants received decent care in the clinical follow-up program, - however, greater effort should be put into patient information. These patients might benefit from genetic counseling. Health professionals involved should recognize their potential impact and influence on a patient’s ability to adjust to these circumstances. Antonovsky`s Sense of Coherence theory is used to discuss these findings.

Place, publisher, year, edition, pages
2007. Vol. 16, no 1, p. 105-117
Keyword [en]
MEN1, information, empowerment, genetic counseling, quality of life, sense of coherence
National Category
Medical and Health Sciences
Identifiers
URN: urn:nbn:se:uu:diva-10400DOI: 10.1007/s10897-006-9047-2PubMedID: 17277996OAI: oai:DiVA.org:uu-10400DiVA: diva2:38168
Available from: 2007-03-22 Created: 2007-03-22 Last updated: 2017-12-11Bibliographically approved

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Publisher's full textPubMedhttp://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed&cmd=Retrieve&list_uids=17277996&dopt=Citation

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Nordin, KBerglund, GHansson, M G

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