Department of Health Research, Sintef Technology and Society, Oslo, Norway
By: Plata Sofie Diesen, Ingrid Wiig and Lisbet Grut
References
- Ahring
, K., A., K., H., A. M., A., K., M., M., and M.. 2009. “ Dietary Management Practices in Phenylketonuria across European Centres.” Clinical Nutrition: 231– 236. doi: 10.1016/j.clnu.2009.03.004. - Balfe
, M., F., D., S., R., D., and R.. 2013. “ What's Distressing about Having Type 1 Diabetes? A Qualitative Study of Young Adults’ Perspectives.” BMC Endocrine Disorders: 25. doi: 10.1186/1472-6823-13-25. - Barnes
, C., G., and T.. 1999. Exploring Disability: A Sociological Introduction. Malden, MA: Blackwell. - Becker
, H. S.. Tricks of the Trade – How to Think about Your Research while You're Doing It. Chicago: The University of Chicago Press. - Berglund
, B., A.-C., and I.. 2010. “ Dignity Not Fully Upheld When Seeking Health Care: Experiences Expressed by Individuals Suffering from Ehlers–Danlos Syndrome.” Disability and Rehabilitation( 1): 1– 7. doi: 10.3109/09638280903178407. - Berry
, S. A., C., M., C. L., E., J., K., et al. 2014. “ Newborn Screening 50 Years Later: Access Issues Faced by Adults with PKU.” Genetics in Medicine( 8): 591– 599. doi: 10.1038/gim.2013.10. - Bilder
, D. A., B. K., H., L., J., B. D., H., A. V., and N.. 2013. “ Psychiatric Symptoms in Adults with Phenylketonuria.” Molecular Genetics and Metabolism( 3): 155– 160. doi: 10.1016/j.ymgme.2012.12.006. - Burton
, B. K., and L.. 2010. “ Reaching Out to the Lost Generation of Adults with Early Treated Phenylketonuria (PKU).” Molecular Genetics and Metabolism: 146– 148. doi: 10.1016/j.ymgme.2010.06.006. - Das
, A. M., K., U., N., S., S., T., et al. 2014. “ Dietary Habits and Metabolic Control in Adolescents and Young Adults with Phenylketonuria: Self-imposed Protein Restriction May Be Harmful.” JIMD Reports: 149– 158. doi: 10.1007/8904_2013_273. - Deal
, M.. “ Disabled People's Attitudes toward Other Impairment Groups: A Hierarchy of Impairments.” Disability & Society( 7): 897– 910. doi: 10.1080/0968759032000127317. - Di Ciommo
, V., E., and G.. 2012. “ Living with Phenylketonuria from the Point of View of Children, Adolescents, and Young Adults: A Qualitative Study.” Journal of Developmental Behavioral Pediatrics( 3): 229– 235. doi: 10.1097/DBP.0b013e3182460d8a. - Douglas
, M.. Purity and Danger. New York: Routledge and Kegan Paul. - Douglas
, M.. “Deciphering a Meal.” Implicit Meanings: Essays in Anthropology. London: Routledge and Kegan Paul. - Edge
, J. T., ed . 2007. The New Encyclopedia of Southern Culture, Vol. 7: Foodways. Chapel Hill: University of North Carolina Press. - Edwards
, S. D.. “ The Impairment/Disability Distinction: A Response to Shakespeare.” Journal of Medical Ethics: 26– 27. doi: 10.1136/jme.2006.019950. - Felde
, L. K. H.. “ ‘I Take a Small Amount of the Real Product’: Elevated Cholesterol and Everyday Medical Reasoning in Liminal Space.” Health( 6): 604– 619. - Foucault
, M.. The Birth of the Clinic. London: Routledge. - Frank
, N., R., and M.. 2007. “ Phenylketonuria – The Lived Experience.” The New Zealand Medical Journal( 1262): 43– 52. - Gentile
, J. K., A. E., and A. M.. 2010. “ Psychosocial Aspects of PKU: Hidden Disabilities – A Review.” Molecular Genetics and Metabolism: S64– S67. doi: 10.1016/j.ymgme.2009.10.183. - Giddens
, A.. Modernity and Self-identity: Self and Society in the Late Modern Age. Cambridge: Polity Press. - Glaser
, B. G.. Doing Grounded Theory: Issues and Discussions. Mill Valley, CA: Sociology Press. - Glaser
, B. G., and A. L.. 1967. The Discovery of Grounded Theory: Strategies for Qualitative Research. New York: Aldine. - Goffman
, E.. Stigma – Notes on the Management on Spoiled Identity. London: Penguin Books. - Grut
, L., and M. H.. 2013. “ Facing Ignorance: People with Rare Disorders and Their Experiences with Public Health and Welfare Services.” Scandinavian Journal of Disability Research( 1): 20– 32. doi: 10.1080/15017419.2011.645870. - Guptill
, A. E., D. A., and B.. 2013. Food & Society – Principles and Paradoxes. Cambridge: Polity Press. - Hoeks
, M. P. A., M., and M. C. H.. 2009. “ Adult Issues in Phenylketonuria.” The Netherlands Journal of Medicine( 1): 2– 7. - Jackson
, J. E.. “ Stigma, Liminality, and Chronic pain: Mind-body Borderlands.” American Ethnologists( 3): 332– 353. doi: 10.1525/ae.2005.32.3.332. - James
, A., and J.. 2007. Embodying Health Identities. New York: Palgrave Macmillan. - Kaufmann
, J.-C.. The Meaning of Cooking. Cambridge: Polity Press. - Lingsom
, S.. “ Invisible Impairments: Dilemmas of Concealment and Disclosure.” Scandinavian Journal of Disability Research( 1): 2– 16. doi: 10.1080/15017410701391567. - MacDonald
, A., H., M., and P.. 2010. “ The Reality of Dietary Compliance in the Management of Phenylketonuria.” Journal of Inherited Metabolic Disease: 665– 670. doi: 10.1007/s10545-010-9073-y. - Oliver
, M.. The Politics of Disablement. Basingstoke: Macmillan. - Olsson
, C., P., A., A., and Y. M.. 2009. “ Food that Makes You Different: The Stigma Experienced by Adolescents with Celiac Disease.” Qualitative Health Research( 7): 976– 984. doi: 10.1177/1049732309338722. - Parsons
, T.. The Social System. Glencoe: Free Press. - Persson
, D., L.-K., M., and S.. 2001. “ Value Dimensions, Meaning and Complexity in Human Occupation – A Tentative Structure for Analysis.” Scandinavian Journal of Occupational Therapy: 7– 18. doi: 10.1080/110381201300078447. - Polland
, M.. Cooked – A Natural History of Transformation. London: Penguin Books. - Quandt
, S. A.. “ Social and Cultural Influences on Food Consumption and Nutritional Status .” In Modern Nutrition in Health and Disease, edited by M. E., J. A., M., and A. C., 1783– 1792. Baltimore, MD: Williams & Wilkins. - Shakespeare
, T.. “ Disability, Identity and Difference .” In Chapter 6 in Exploring the Divide, edited by C.and G., 94– 113. Leeds: The Disability Press. - Shakespeare
, T.. Disability Rights and Wrongs. London: Routledge. - Sharman
, R., K., and M.. 2013. “ Qualitative Analysis of Factors Affecting Adherence to the Phenylketonuria Diet in Adolescents.” Clinical Nurse Specialist( 4): 205– 210. doi: 10.1097/NUR.0b013e31829555d5. - Simon
, E., M., J., N., M., J., G., and U.. 2008. “ Evaluation of Quality of Life and Description of the Sociodemographic State in Adolescent and Adult Patients with Phenylketonuria (PKU).” Health and Quality of Life Outcomes: 25. doi: 10.1186/1477-7525-6-25. - Sverker
, A., G., and C.. 2005. “‘ Controlled by Food’ – Lived Experience of Coeliac Disease.” Journal of Human Nutrition and Dietetics: 171– 180. doi: 10.1111/j.1365-277X.2005.00591.x. - ten Hoedt
, A. E., L. M. J., B., N. M., M. C., M. E., F. A., C. E., and A. M.. 2011. “ High Phenylalanine Levels Directly Affect Mood and Sustained Attention in Adults with Phenylketonuria: A Randomised, Double-blind, Placebo-controlled, Crossover Trial.” Journal of Inherited Metabolic Disease( 1): 165– 171. doi: 10.1007/s10545-010-9253-9. - Turner
, V.. “ Betwixt and Between: The Liminal Period in Rites de Passage .” In Symposium on New Approaches to the Study of Religion: Proceedings of the 1964 Annual Spring Meeting of the American Ethnological Society, edited by J., 4– 20. Seattle: American Ethnological Society. - Vegni
, E., L., E., M., and E. A.. 2009. “ How Individuals with Phenylketonuria Experience Their Illness: An Age-related Qualitative Study.” Child: Care, Health and Development( 4): 539– 548. doi: 10.1111/j.1365-2214.2009.01000.x. - Westbrook
, M. T., V., and M.. 1993. “ Attitudes towards Disabilities in a Multicultural Society.” Social Science & Medicine( 5): 615– 623. doi: 10.1016/0277-9536(93)90058-C.
DOI: https://doi.org/10.1080/15017419.2014.941003 | Journal eISSN: 1745-3011
Language: English
Page range: 321 - 334
Submitted on: Dec 13, 2013
Accepted on: May 19, 2014
Published on: Aug 4, 2015
Published by: Stockholm University Press
In partnership with: Paradigm Publishing Services
Keywords:
© 2015 Plata Sofie Diesen, Ingrid Wiig, Lisbet Grut, published by Stockholm University Press
This work is licensed under the Creative Commons Attribution 4.0 License.