This Article Abstract Free Full Text (Free PDF) Free Alert me when this article is cited Alert me if a correction is posted Services Email this article to a friend Similar articles in this journal Alert me to new issues of the journal Add to Saved Citations Download to citation manager Request Permissions Request Reprints Add to My Marked Citations Citing Articles Citing Articles via Google Scholar Citing Articles via Scopus Google Scholar Articles by Fourie, R. J. Search for Related Content Social Bookmarking                         What's this?

A qualitative self-study of Retinitis Pigmentosa

University College Cork, Ireland, r.fourie{at}ucc.ie

Retinitis Pigmentosa (RP) is a retinal dege nerative disease causing progressive blindness. Most research on RP is biomedical, and mostly from an observer perspective, therefore poorly reflecting the lived experience of having RP. Accordingly, the researcher conducted a retrospective qualitative self-study, to analyse reflections on his own experience of diagnosis and receiving a mobility cane, as contained in emails sent to friends and colleagues. This analysis yielded a number of interesting themes significant to the RP experience, namely diagnosis, impact and dealing with RP. Reference is made to literature encouraging ophthalmologists to be actively involved in the facilitation of adjustment to loss of vision. Other significant issues relevant to visual impairment, such as the stigma associated with the long cane and challenging the dominant social discourse regarding disability, are discussed. In addition, the importance of qualitative research to elicit the stories of blind individuals is highlighted.

Key Words: adjustment • blindness • disability • qualitative research • Retinitis Pigmentosa • self-study

References

• Brody, B.L., Gamst, A.C., Williams, R.A., SMITH, B. A., LAU, M. A., DOLNAK, D., RAPAPORT, M. H., KAPLAN, R. M. & BROWN, S. I. (2001) `Depression, Visual Acuity, Comorbidity, and Disability Associated with Age-related Macular Degeneration', Ophthalmology 108(10): 1893—1900.[CrossRef][Medline] [Order article via Infotrieve]
• Bullough, R.V. & Pinnegar, S. (2001) `Guidelines for Quality in Autobiographical Forms of Self-Study Research', Educational Researcher 30(3): 13—21.[Abstract/Free Full Text]
• Charmaz, K. (1995) `Grounded Theory'. In J. A. Smith, R. Harré & L. Van Langenhoven (eds) Rethinking Methods in Psychology, pp. 27—48. London: SAGE.
• Cleary, M. (1989) `Coping with Vision Loss', Diabetes Forecast 42(7): 42—45.
• Davis, J.M. (2000) `Disability Studies as Ethnographic Research and Text: Research Strategies and Roles for Promoting Social Change', Disability & Society 15(2): 191—206.[CrossRef]
• Ducket, P.S. & Pratt, R. (2001) `The Researched Opinions on Research: Visually Impaired People and Visual Impairment Research', Disability and Society 16(6): 815—35.[CrossRef]
• Ellwein, L.B., Fletcher, A., Negrel, A.D. & Thulasiraj, R.D. (1994) `Quality of Life Assessment in Blindness Prevention Interventions', International Ophthalmology 18(5): 263—8.
• Freeman, R.D., Goetz, E., Richards, D.P. & Groenveld, M. (1991) `Defiers of Negative Prediction: A 14-year Follow up Study of Legally Blind Children', Journal of Visual Impairment and Blindness 85(9): 365—70.
• Giorgi, A. (2004) A Way to Overcome the Methodological Vicissitudes Involved in Researching Subjectivity', Journal of Phenomenological Psychology 35(1): 1—25.[CrossRef]
• Hayeems, R.Z., Geller, G., Finkelstein, D. & Faden, R.R. (2005) `How Patients Experience Progressive Loss of Visual Function: A Model of Adjustment using Qualitative Methods', British Journal of Ophthalmology 89(5): 615—20.
• Henwood, K.L. & Pidgeon, N. (1992) `Qualitative Research and Psychological Theorizing', British Journal of Psychology 83(1): 97—111.[Medline] [Order article via Infotrieve]
• Humphries, P., Farrar, G.J., Kenna, P. & Mcwilliam, P. (1990) `Retinitis Pigmentosa: Genetic Mapping in X-linked and Autosomal Forms of the Disease', Clinical Genetics 38(1): 1—13.[Medline] [Order article via Infotrieve]
• Husserl, E. (1983) Ideas Pertaining to a Pure Phenomenology and to a Phenomenological Philosophy. Book One (F. Kersten, trans.). Dordrecht: M. Nijhoff.
• Husserl, E. (1989) Ideas Pertaining to a Pure Phenomenology and to a Phenomenological Philosophy. Book Two. (R. Rojcewicz & A. Schuwer, Trans.) Dordrecht: Kluwer Academic Publishers.
• Jackson, W.T., Taylor, R.E., Palmatier, A.D., Elliot, T.R. & Elliot, J.L. (1998) `Negotiating the Reality of Visual Impairment: Hope, Coping and Functionality', Journal of Clinical Psychology 5(2): 173—85.[CrossRef]
• Jernigan, K. (1982) `Blindness, Handicap or Characteristic?', The Braille Monitor 21(2). Online: http://www.blind.net/bpg00001.htm [accessed September 2006].
• Mangione, C.M., Phillips, R.S., Seddon, J.M., Lawrence, M.G., Cook, E.F., Dailey, R. & Goldman, L. (1992) `Development of the "Activities of Daily Vision Scale". A Measure of Visual Functional Status', Medical Care 30(12): 1111—26.[Medline] [Order article via Infotrieve]
• Margalit, E. & Sadda, S.R. (2003) `Retinal and Optic Nerve Diseases', Artificial Organs 27(11): 963—74.[CrossRef][Medline] [Order article via Infotrieve]
• Maxwell, J.A. (1996) `Qualitative Research Design: An Interactive Approach ', Applied Social Research Methods Series 41. London: SAGE.
• Merabet, L.B., Rizzo, J.F., Amedi, A., Somers, D.C. & Pascual-Leone, A. (2005) `What Blindness Can Tell Us About Seeing Again: Merging Neuroplasticity and Neuroprostheses', Nature Reviews, Neuroscience, 6(1): 71—7.[CrossRef][Medline] [Order article via Infotrieve]
• Mills, C.W. (1959) The Sociological Imagination. New York: Oxford University Press.
• Moore, L.W. (2000) `Severe Visual Impairment in Older Women', Western Journal of Nursing Research 22(5): 571—88.[Abstract/Free Full Text]
• Mühr, T. (1997) Atlas TI, Berlin: Scientific Software Development.
• Murphy, R. (1990) The Body Silent. New York: W.W. Norton & Company.
• Walline, J.J., Bailey, M.D. & Zadnik, K. (2000) `Vision-Specific Quality of Life and Modes of Refractive Error Correction', Optometry and Vision Science 77(12): 648—52.[CrossRef][Medline] [Order article via Infotrieve]
• Warnath, C.F. (1989) `We are all TAPs (Temporarily Able Persons)', Journal of Counseling and Development 67(9): 518—19.
• Woodcock, A., Bradley, C., Plowright, R., Ffytche, T., Kennedy-Martin, T. & Hirsch, A. (2004) `The Influence of Diabetic Retinopathy on Quality of Life Interviews to Guide the Design of a Condition-specific, Individualized Questionnaire: The RetDQol', Patient Education and Counseling 53(3): 365—83.
• Zaborowski, B. (1997) `Adjustment to Vision Loss and Blindness: A Process of Reframing and Retraining', Journal of Rational Emotive and Cognitive Behavior Therapy 15(3): 215—21.[CrossRef]

British Journal of Visual Impairment, Vol. 25, No. 3, 217-232 (2007)
DOI: 10.1177/0264619607079794


CiteULike    Complore    Connotea    Del.icio.us    Digg    Reddit    Technorati    Twitter    What's this?

This Article Abstract Free Full Text (Free PDF) Free Alert me when this article is cited Alert me if a correction is posted Services Email this article to a friend Similar articles in this journal Alert me to new issues of the journal Add to Saved Citations Download to citation manager Request Permissions Request Reprints Add to My Marked Citations Citing Articles Citing Articles via Google Scholar Citing Articles via Scopus Google Scholar Articles by Fourie, R. J. Search for Related Content Social Bookmarking                         What's this?