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
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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.
KEY WORDS:MEN1 information empowerment genetic counseling quality of life sense of coherence.
We acknowledge the Norwegian Cancer Society, the Functional Genomics (FUGE) network and the University of Uppsala for financial support. Special thanks also to the two anonymous reviewers and the editor for their helpful comments.
- Anderson, J. M. (1996). Empowering patients: Issues and strategies. Social Science and Medicine, Sept, 43.Google Scholar
- Antonovsky, A. (1987). Unraveling the mystery of health: How people manage stress and stay well. San Francisco: Jossey Bass.Google Scholar
- Baker, D. L., Schuette, L., & Uhlman, W. R. (1998). A guide to genetic counseling. Wiley-Liss, Inc.Google Scholar
- Giorgi, A. (ed.). (1985). Phenomeology and psychological research. Pittsburgh: Duquesne University Press.Google Scholar
- Glanz, K., Rimer, B. K., & Lewis, F. M. (2002). Health behavior and health education: Theory, research, and practice. 3rd edition.Google Scholar
- Griffin, J. (1986). Well-being. Its meaning, measurement and moral importance. Oxford: Clarendon Press.Google Scholar
- Kvale, S. (1996). InterViews. An introduction to qualitative research interviewing. Sage Publcations.Google Scholar
- Resta, R. G. (2000). Psyche and helix. Psychological aspects of genetic counseling. Essays by Seymor Kessler, Wiley-Liss Inc.Google Scholar
- Shumaker, S. A., & Naughton, M. J. (1995). The international assessment of health-related quality of life: A theoretical perspective. Oxford: Rapid Communication of Oxford Ltd.Google Scholar
- Thakker, R. V. (1998). Multiple endocrine neoplasia: Syndromes of the twentieth century. (Editorial). J Clin Endocrinol Metabol, 83, 2617–2620.Google Scholar
- Thesen, J., & Malteud, K. (2001). “Empowerment” og pasientstyrking- et undervisningsopplegg. Tidsskrift for den Norske Legeforening, Nr. 13, 121, 1624–1628.Google Scholar
- Westerlund, K. (2002). The meaning of Context: An empirical study of Views of Life in Perceptions of Gene Technology and in Narratives about Childlessness, Assisted onception and Adoption. Acta Universitas Upsaliensis, Uppsala Studies in Faiths and Ideologies 10, 296pp, Uppsala, ISBN 91–554-5360–0.Google Scholar