Personal dignity of a patient with multiple sclerosis: interpretative phenomenological analysis

Česká verze

Authors: J. Čáp ¹; K. Žiaková ¹; E. Gurková ²; R. Kurucová ¹; J. Grossmann ³
Authors place of work: Univerzita Komenského v Bratislave, Jesseniova lekárska fakulta v Martine, Ústav ošetrovateľstva, Vedúca ústavu: prof. Mgr. Katarína Žiaková, PhD. ¹; Univerzita Palackého v Olomouci, Fakulta zdravotnických věd, Ústav ošetřovatelství, Přednosta: Mgr. Zdeňka Mikšová, Ph. D. ²; Univerzitná nemocnica v Martine, Neurologická klinika, Prednosta: prof. MUDr. Egon Kurča, PhD., FESO ³
Published in the journal: Prakt. Lék. 2019; 99(1): 21-27
Category: Z různých oborů

Summary

Objectives:

Find out how the patient with multiple sclerosis thinks about her personal dignity and impact of illness on this phenomenon.

Method:

The study has design of a pilot phenomenological interpretive case study. A semi-structured interview was used to collect empirical data which were analysed by interpretative phenomenological analysis (IPA).

Participant:

Adela, 53-year-old woman with a relapse-remitting form of multiple sclerosis participated in the study. Patient´s name has been changed.

Results:

Eight main themes describing patient’s experience with personal dignity has been identified: To be able to do what I want – everyday life. The diagnosis; it is crucial to accept and get used to it gradually – acceptance and adjustment. You are disabled and there isn’t any good for you – life without perspective labelled MS. Hospitalization (discomfort examinations, small rooms, bathrooms; overbearing roommate patients) – loss of privacy. Weak body to perform daily routines – difficulty with mobility. Help with daily activities – loss of independence. Health care professionals, great service – information and support. Patient’s dignity has been undermined by the disease and its symptoms, loss of normal life and independence (autonomy), loss of identity, confrontation with other people, and limitation of privacy during hospitalization. On the contrary, supportive agents for the preservation of her personal dignity were as follows: health care professionals, information provided by them and assistance, as well as own acceptance of the disease.

Conclusion:

The analysis of the case study shows that MS has had a significant impact on the sense of the patient's personal dignity. From the point of view of understanding the patient perspective, it is necessary to carry out qualitative research that would describe and interpret their life experience with their own dignity.

Keywords:

dignity – multiple sclerosis – case study – interpretative phenomenological analysis

Zdroje

1. Dehghani A, Dehghan Nayeri N, Ebadi A. Antecedents of coping with the disease in patients with multiple sclerosis: a qualitative content analysis. Int J Community Based Nurs Midwifery 2017; 5(1): 49–60.

2. Ghafari S, Fallahi Khoshknab M, Nourozi K, Mohammadi E. Patients’ experiences of adapting to multiple sclerosis: qualitative study. Contemp Nurse 2015; 50(1): 36–49.

3. Goldenberg MM. Multiple sclerosis review. P T. 2012; 37(3): 175–184.

4. Gurková E. Nemocný a chronické onemocnění. Edukace, motivace a opora pacienta. Praha: Grada Publishing 2017.

5. Hudáková A, Majerníková Ľ. Kvalita života seniorů v kontextu ošetřovatelství. Praha: Grada Publishing 2013.

6. Isaksson AK, Gunnarsson LG, Ahlström G. The presence and meaning of chronic sorrow in patients with multiple sclerosis. J Clin Nurs 2007; 16(11): 315–324.

7. Jacobson N. Dignity and health. Nashville, TN: Vanderbilt University Press 2012.

8. Joachim G, Acorn S. Stigma of visible and invisible chronic conditions. J Adv Nurs 2000; 32(1): 243–248.

9. Kantorová E, Kurča E, Michalik J. Hodnotenie kvality života pacientov so sclerosis multiplex. Neurol prax 2012; 13(4): 213–215.

10. Kralik D, Brown M, Koch T. Women’s experiences of “being diagnosed” with a long-term illness. J Adv Nurs 2001; 33(5): 594–602.

11. Lee J, Dunn J. Mobility concerns in multiple – sclerosis – studies and surveys on US patient populations of relevance to nurses. US Neurology 2013; 9(1): 18–23.

12. Lin Y-P, Watson R, Tsai Y-F. Dignity in care in the clinical setting: a narrative review. Nursing Ethics 2013; 20(2): 168–177.

13. Lohne V, Aasgaard T, Caspari S, et al. The lonely battle for dignity: individuals struggling with multiple sclerosis. Nursing Ethics 2010; 17(3): 301–311.

14. Mansson E, Lexell J. Performance of activities of daily living in multiple sclerosis. Disabil Rehabil 2009; 26(10): 576–585.

15. Matiti MR, Trorey G. Perceptual adjustment levels: patients’ perception of their dignity in the hospital setting. Int J Nurs Stud 2004; 41(7): 735–744.

16. Miertová M, Pľutová A, Ovšonková A, Čáp J. Vybrané problémy u pacientiek s relaps-remitujúcou formou sclerosis multiplex. Prakt. Lék. 2017; 97(5): 227–233.

17. Mitchell AJ, Benito-León J, Mordes Gonzáles JM, Rivera-Navarro J. Quality of life and its assessment in multiple sclerosis: integrating physical and psychological components of wellbeing. Lancet Neurol 2005; 4(9): 556–566.

18. Nordenfelt L. The four notions of dignity. Qual Ageing Older Adults 2005; 6(1): 17–21.

19. Nordenfelt L. The concept of dignity. In: Nordenfelt, L. Dignity in care for older people. Oxford: Blackwell Publishing 2009; 26–53.

20. Olsson M, Lexell J, Soderberg S. The meaning of fatigue for women with multiple sclerosis. J Adv Nurs 2008; 49(1): 7–15.

21. Randers I, Mattiasson A. Autonomy and integrity: upholding older adult patients’ dignity. J Adv Nurs 2004; 45(1): 63–71.

22. Sharifi S, Borhani F, Abbaszadeh A. Factors affecting dignity of patients with multiple sclerosis. Scand J Caring 2016; 30(4): 731–740.

23. Smith JA, Flowers P, Larkin M. Interpretative phenomenological analysis: Theory, method and research. London: Sage Publications 2009.

24. Smith JA. Evaluating the contribution of interpretative phenomenological analysis. Health Psychol Rev 2011; 5(1): 9–27.

25. Vališ M, Pavelek Z. Základní diagnostika a léčba roztroušené sklerózy. Via practica 2015; 12(4): 171–174.

26. Van Gennip IE, Pasman HRW, Oosterveld-Vlug MG, et al. The development of a model of dignity in illness based on qualitative interviews with seriously ill patients. Int J Nurs Stud 2013; 50(8): 1080–1089.

27. Wainwright P, Gallagher A. On different types of dignity in nursing care: a critique of Nordenfelt. Nurs Philos 2008; 9(1): 46–54.