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Developing patient-centered care for multiple sclerosis (MS). Learning from patient perspectives on the process of MS diagnosis Learning from Patient Perspectives on the process of MS diagnosis.

Arhie de Ceuninck van Capelle, Leo H Visser, Frans Vosman

Abstract


Rationale, aims and objectives: The recent history of practices of disclosure of MS diagnoses reflects the transition from paternalistic to patient-centred care (PCC). Numerous concepts have been developed to implement this model of medicine in clinical practice. In PCC, the importance of the patient perspective is paramount. This paper aims to provide a phenomenological examination of the patient perspective on testing for MS.

Methods: Ten people diagnosed with MS were interviewed in open, in-depth interviews. Transcriptions were analysed using a phenomenological approach.

Results: One main theme “Varying perceptions of the diagnosis” and 4 subthemes were identified. The subthemes are: (a) increased awareness of the body, (b) alienating spaces, (c) intensified perceptions of time and (d) intensified perceptions of medical personnel.

Conclusions: The analysis of the patient perspective on the process of MS diagnosis shows intensified and wavering perceptions of body, place, time and medical employees. Accepting patient perceptions as constitutive elements of the doctor-patient relationship may help clinicians make care for persons that are being tested for MS more patient-centred. As a concrete proposal for improvement of current practices we suggest avoiding the transmission of the test results at the first meeting of patient and doctor. Doctor and patient should get acquainted with each other and each other’s perspectives at the beginning of the diagnostic trajectory and together journey towards its conclusion.


Keywords


Diagnostic techniques and procedures, disclosure, ethics, patient-centered care, perception, person-centered healthcare, qualitative research, relapsing-remitting multiple sclerosis

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References


Raphael, A., Hawkes, C. & Bernat, J. (2013). To tell or not to tell? Revealing the diagnosis in multiple sclerosis. Multiple Sclerosis and Related Disorders 2 (3) 247-251.

Morgan, S. & Yoder, L.H. (2012). A concept analysis of person-centered care. Journal of Holistic Nursing 30 (1) 6-15.

Elian, M. & Dean, G. (1985). To tell or not to tell the diagnosis of multiple sclerosis. Lancet 326 (8445) 27-28.

Sencer, W. (1988). Suspicion of multiple sclerosis: to tell or not to tell? Archives of Neurology 45 (4) 441-442.

Burnfield, A. (1984). Doctor-patient dilemmas in multiple sclerosis. Journal of Medical Ethics 10 (1) 21-26.

Toombs, S.K. (1988). Illness and the paradigm of lived body. Theoretical Medicine 9 (2) 201-226.

Levine, C. (1983). Delaying the diagnosis: truth-telling and multiple sclerosis. Hastings Center Report 13 (3) 2.

McLaughlin, H. (2009). What’s in a name: “client”, “patient”, “customer”, “consumer” ,“expert by experience”, “service user” - what’s next? British Journal of Social Work 39 (6) 1101-1117.

Newman, J. & Tonkens, E. (2011). Participation, responsibility and choice: summoning the active citizen in western European welfare states. Amsterdam: Amsterdam University Press.

Barry, M.J. & Edgman-Levitan, S. (2012). Shared decision making - the pinnacle of patient-centered care. New England Journal of Medicine 366 (9) 780-781.

Fisher, P. (2007). Experiential knowledge challenges “normality” and individualized citizenship: towards another way of being. Disability & Society 22 (3) 283-298.

Greenfield, B. & Jensen, G.M. (2010). Beyond a code of ethics: Phenomenological ethics for everyday practice. Physiotherapy Research International 15 (2) 88-95.

Krahn, T.M. (2013). Care ethics for guiding the process of multiple sclerosis diagnosis. Journal of Medical Ethics 40 (12) 802-806.

Martinsen, E. (2011). Harm in the absence of care: Towards a medical ethics that cares. Nursing Ethics 18 (2) 174-183.

Martinsen, E.H. (2011). Care for nurses only? Medicine and the perceiving eye. Health Care Analysis 19 (1) 15-27.

van Capelle de Ceuninck, A.M., Visser, L.H. & Vosman, F. (2015). Multiple Sclerosis and Work. An Interpretative Phenomenological Analysis of the Perspective of Persons with early stage MS. Journal of Multiple Sclerosis 2, 4.

Murray, S.J. & Holmes, D. (2014). Interpretive Phenomenological Analysis (IPA) and the Ethics of Body and Place: Critical Methodological Reflections. Human Studies 37 (1) 1-16.

Smith, J.A., Flowers, P. & Larkin, M. (2009). Interpretative Phenomenological Analysis: Theory, Method and Research.New York: Sage Publications.

Hodge, N. (2008). Evaluating Lifeworld as an emancipatory methodology. Disability & Society 23 (1) 29-40.

Sakellariou, D., Boniface, G. & Brown, P. (2013). Using Joint Interviews in a Narrative-Based Study on Illness Experiences. Qualitative Health Research 23 (11) 1563-1570.

Barker-Collo, S., Cartwright, C. & Read, J. (2006). Into the unknown: the experiences of individuals living with multiple sclerosis. Journal of Neuroscience Nursing 38 (6) 435-441.

Koopman, W. & Schweitzer, A. (1999). The journey to multiple sclerosis: a qualitative study. Journal of Neuroscience Nursing 31 (1) 17-26.

Miller, C.M. (1997). The lived experience of relapsing multiple sclerosis: a phenomenological study. Journal of Neuroscience Nursing 29 (5) 294-304.

Solari, A., Acquarone, N., Pucci, E., Martinelli, V., Marrosu, M., Trojano, M., Borrean I, C. & Messmer Uccelli, M. (2007). Communicating the diagnosis of multiple sclerosis - a qualitative study. Multiple Sclerosis 13 (6) 763-769.

van Heijst, J. (2011). Professional loving care: An ethical view of the health care sector. Leuven: Peeters Publishers.




DOI: http://dx.doi.org/10.5750/ejpch.v4i4.1191

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