Getting a diagnosis v. learning to live with it? the case of the progressive ataxias

Chronic Illness

Volumn 7, Issue 2, 2011, Pages 120-133

  Daker White, Gavin ^a   Sanders, Caroline ^a   Greenfield, Julie ^b   Ealing, John ^c   Payne, Katherine ^a  

^a UNIVERSITY OF MANCHESTER   (United Kingdom)

^b Ataxia UK   (United Kingdom)

^c HOPE HOSPITAL   (United Kingdom)

Author keywords

Ataxia; diagnosis; Internet data; neurology; qualitative study

Indexed keywords

ARTICLE; ATAXIA; ATTITUDE TO DISABILITY; ATTITUDE TO ILLNESS; COPING BEHAVIOR; DISABILITY SEVERITY; EXPLORATORY RESEARCH; INTERNET PROTOCOL; PROGRESSIVE ATAXIA; RARE DISEASE;

ATAXIA; CHRONIC DISEASE; DIAGNOSIS, DIFFERENTIAL; DISEASE PROGRESSION; HUMANS; INTERNET; ORGANIZATIONS, NONPROFIT; PATIENT SATISFACTION; PROFESSIONAL-PATIENT RELATIONS;

EID: 79957587828     PISSN: 17423953     EISSN: 17459206     Source Type: Journal    
DOI: 10.1177/1742395310390532     Document Type: Article

References (32)

1. Ataxia UK Management of the ataxias: towards best clinical practice. London, UK: Ataxia 2009.
2. Wardle M. and Robertson N. Progressive late-onset cerebellar ataxia. Adv Clin Neurosci Rehabil 2007 ; 2: 6-12.
3. Hadjivassiliou M., Boscolo S., Tongiorgi E., Grünewald RA, Sharrack B., Sanders DS, et al. Cerebellar ataxia as a possible organ-specific autoimmune disease. Mov Disord 2008 ; 23: 1370-1377.
4. Pinder R. Coherence and incoherence: doctors and patients' perspectives on the diagnosis of Parkinson's Disease. Sociol Health Illn 1992 ; 14: 1-22.
5. Mol A. and Elsman B. Detecting disease and designing treatment. Duplex and the diagnosis of diseased leg vessels. Sociol Health Illn 1996 ; 18: 609-631.
6. Brown P. Naming and framing: the social construction of diagnosis and illness. J Health Soc Behav 1995 ; 35 (extra issue): 34-52.
7. Balint M. The doctor, his patient, and the illness. New York, NY: International Universities Press, 1957.
8. Huibers MJH and Wessely S. The act of diagnosis: pros and cons of labelling chronic fatigue syndrome. Psychol Med 2006 ; doi:10.1017/ S0033291705006926.
9. Barsky AJ and Borus JF Functional somatic syndromes. Ann Intern Med 1999 ; 130: 910-921. (Pubitemid 29239586)
10. Sandaunet A-G.. A space for suffering? Communicating breast cancer in an online self-help context. Qual Health Res 2008 ; 18: 1631-1641.
11. Radin P. ''To me, it's my life'': Medical communication, trust, and activism in cyberspace. Soc Sci Med 2006 ; 62: 591-601. (Pubitemid 41797016)
12. Barker KK Electronic support groups, patient-consumers, and medicalization: The case of contested illness. J Health Soc Behav 2008 ; 49: 20-36.
13. Lasker JN, Sogolow ED and Sharim RR The role of an online community for people with a rare disease: content analysis of messages posted on a primary Biliary Cirrhosis Mailinglist. J Med Internet Res 2005 ; 7: e10.
14. Seale C., Charteris-Black J., MacFarlane A. and McPherson A. Interviews and Internet forums: a comparison of two sources of qualitative data. Qual Health Res, Online First published December 15, 2009 as doi:10.1177/ 1049732309354094.
15. Robinson KM Unsolicited narratives from the Internet: a rich source of qualitative data. Qual Health Res 2001 ; 11: 706-714. (Pubitemid 33707751)
16. Netteleton S., Watt I., O'Malley L. and Duffey P. Understanding the narratives of people who live with medically unexplained illness. Patient Educ Couns 2005 ; 56: 205-210. (Pubitemid 40093819)
17. Nettleton S. 'I just want permission to be ill': towards a sociology of medically unexplained symptoms. Soc Sci Med 2006 ; 62: 1167-1178. (Pubitemid 43129581)
18. Dutton WH, Helsper EJ and Gerber MM The internet in Britain 2009. Oxford: Oxford Internet Institute, University of Oxford, 2009.
19. Seale C., Ziebland S. and Charteris-Black J. Gender, cancer experience and internet use: a comparative akeyword analysis of interviews and online cancer support groups. Soc Sci Med 2006 ; 62: 2577-2590.
20. Critical Appraisal Skills Programme: making sense of evidence: 10 questions to help you make sense of qualitative research. www.pdptoolkit.co.uk/ Files/.../new%2010%20qual%20questionsdoc, downloaded 13th October 2010.
21. Lincoln YS and Guba EG Naturalistic inquiry. Beverly Hills: Sage, 1985.
22. Denzin NK The logic of naturalistic inquiry. Soc Forces 1971 ; 50: 166-182.
23. King SA Researching internet communities: proposed ethical guidelines for the reporting of results. Info Soc 1996 ; 12: 119-128. (Pubitemid 126098397)
24. Pitts V. Illness and Internet empowerment: writing and reading breast cancer in cyberspace. Health (London) 2004 ; 8: 33.
25. Dumit J. Illnesses you have to fight to get: facts as forces in uncertain, emergent illnesses. Soc Sci Med 2006 ; 62: 577-590. (Pubitemid 41797015)
26. Jutel A. Sociology of diagnosis: a preliminary review. Sociol Health Illn 2009 ; 31: 278-299.
27. Chew-Graham C., Dowrick C., Wearden A., Richardson V. and Peters S. Making the diagnosis of Chronic Fatigue Syndrome/Myalgic Encephalitis in primary care: a qualitative study. BMC Fam Pract 2010 ; 11: 16.
28. Johnson J. On receiving the diagnosis of multiple sclerosis: managing the transition. Mult Scler 2003 ; 9: 82-88. (Pubitemid 36253701)
29. Boutté MI The stumbling disease: a case study of stigma among Azorean-Portuguese. Soc Sci Med 1987 ; 24: 209-217. (Pubitemid 17014754)
30. Boutté MI Waiting for the family legacy: the experience of being at risk for Machado-Joseph disease. Soc Sci Med 1990 ; 30: 839-847. (Pubitemid 20121235)
31. Payne K. Editorial: fish and chips all round? Regulation of DNA-based genetic diagnostics. Health Econ 2009 ; 18: 1233-1236.
32. Stempsey WE The geneticization of diagnostics. Med Health Care Philos 2006 ; 9: 193-200. (Pubitemid 44088852)