Challenges in the Daily Living Activities of Patients with Multiple Sclerosis: A Qualitative Content Analysis

Document Type : Original Article

Authors

1 Department of Nursing, School of Nursing and Paramedical, Jahrom University of Medical Sciences, Jahrom, Iran

2 Research Center for Noncommunicable Diseases, Jahrom University of Medical Sciences, Jahrom, Iran

Abstract

Background: Multiple sclerosis (MS) is a chronic nervous system disease with a wide range of symptoms that affect the self-care ability of patients in daily activities of life; the patients afflicted with this disease face with many challenges. This study was conducted to explore the activities of daily living (ADL) challenges of these patients.
Methods: In this conventional content analysis study, fourteen MS patients who were selected purposively from Iran MS Society in Jahrom (Iran) participated in 2018. Data were gathered using semi-structured and in-depth interviews. A total of 14 interviews were conducted.  These data were analyzed using MAXQDA 10 Software and the Graneheim and Lundman method.
Results: Analysis of data led to extraction of the main theme “fear of ambiguous future of diseases” as the most important daily living challenge in MS patients. This challenges were categorized in four main categories: 1) confrontation to physical, emotional, psychological and behavioral changes, 2) fear of becoming crippled, 3) tolerance of financial burden of the disease, and 4) confrontation to cultural-social wrong beliefs.
Conclusion: The results of this study showed that people with MS face a number of ADL challenges. Fear of an ambiguous future leads to problems in ADL of patients. Therefore, considering the ADL challenges, health care personnel especially nurses, family members and social organizations can improve ADL and compromise patients with the disease as much as possible by providing conditions for application of the self-care activities and their implementation by patients.

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    Reference

     

    1. Kinnett-Hopkins D, Adamson B, Rougeau K, Motl RW. People with MS are less physically active than healthy controls but as active as those with other chronic diseases: an updated meta-analysis. Multiple Sclerosis and Related Disorders. 2017;13:38-43.
    2. Dehghani A, Dehghan Nayeri N, Ebadi A. Development and validation of the coping with multiple sclerosis questionnaire. Multiple Sclerosis and Related Disorders. 2017;18:49-55.
    3. Dehghani A, Dehghan Nayeri N, Ebadi A. Features of coping with disease in Iranian multiple sclerosis patients: a qualitative study. Journal of Caring Sciences. 2018;7:35-40.
    4. Belbasis L, Bellou V, Evangelou E, et al. Environmental risk factors and multiple sclerosis: an umbrella review of systematic reviews and meta-analyses. The Lancet Neurology. 2015;14:263-73.
    5. Etemadifar M, Sajjadi S, Nasr Z, et al. Epidemiology of multiple sclerosis in Iran: a systematic review. European Neurology. 2013;70:356-63.
    6. Rahn AC, Köpke S, Backhus I, et al. Nurse-led immunotreatment Decision Coaching In people with Multiple Sclerosis (DECIMS)-Feasibility testing, pilot randomised controlled trial and mixed methods process evaluation. International Journal of Nursing Studies. 2018;78:26-36.
    7. Stadelmann C. Multiple sclerosis as a neurodegenerative disease: pathology, mechanisms and therapeutic implications. Current Opinion in Neurology. 2011;24:224-9.
    8. Schüz J, Fored M. Chronic Disease Registries–Trends and Challenges. Methods of Information in Medicine. 2017;56:328-9.
    9. Etemadifar M, Izadi S, Nikseresht A, et al. Estimated prevalence and incidence of multiple sclerosis in Iran. European Neurology. 2014;72:370-4.
    10. Ghanati E, Hadiyan M, Daghighi Asli AR. Economic expenditures of multiple sclerosis medications and feasibility of providing health insurance policies for medications. Journal of Health Administration. 2011;14:37-54. [In Persian]
    11. Basak T, Unver V, Demirkaya S. Activities of Daily Living and Self-Care Agency in Patients with Multiple Sclerosis for the First 10 Years. Rehabilitation Nursing. 2015;40:60-5.
    12. Soleimani MA, Bastani F, Negarandeh R. Exploraing of challenges of self-care in people with Parkinson’s disease: Resulting from qualitative research study. Journal of Gerontology. 2016:1:63-78. [In Persian]
    13. Einarsson U, Gottberg K, Fredrikson S, et al. Activities of daily living and social activities in people with multiple sclerosis in Stockholm County. Clinical Rehabilitation. 2006;20:543-51.
    14. Masoudi R, Kheiri F, Ahmadi F, Mohammadi I. The effect of Self-Care Program Base on the Orem Frame Work on Fatigue and Activity of Daily Living in Multiple Sclerosis Patients. Journal of Rehabiliation. 2009;10:43-52.
    15. Roudi O, Tirgari B, Cheraghi MA, et al. “Tender Care”: Iranian Women’s Needs to Cope with Hysterectomy and Oophorectomy- A Qualitative Content Analysis Study. International Journal of Community Based Nursing and Midwifery. 2019;7:63-74.
    16. Valizadeh L, Zamanzadeh V, Habibzadeh H, et al. Experiences of Iranian nurses that intent to leave the clinical nursing: a content analysis. Journal of Caring Sciences. 2016;5:169-78.
    17. Graneheim UH, Lundman B. Qualitative content analysis in nursing research: concepts, procedures and measures to achieve trustworthiness. Nurse Education Today. 2004;24:105-12.
    18. Sanders SL, Bantum EO, Owen JE, et al. Supportive care needs in patients with lung cancer. Psycho‐oncology. 2010;19:480-9.
    19. Garrido MM, Balboni TA, Maciejewski PK, et al. Quality of life and cost of care at the end of life: the role of advance directives. Journal of Pain and Symptom Management. 2015;49:828-35.
    20. Motl RW, McAuley E, Snook EM, Gliottoni RC. Physical activity and quality of life in multiple sclerosis: intermediary roles of disability, fatigue, mood, pain, self-efficacy and social support. Psychology, Health & Medicine. 2009;14:111-24.
    21. Elliott TR, Berry JW, Grant JS. Problem-solving training for family caregivers of women with disabilities: A randomized clinical trial. Behaviour Research and Therapy. 2009;47:548-58.
    22. Reynolds R, Dennis S, Hasan I, et al. A systematic review of chronic disease management interventions in primary care. BMC Family Practice. 2018;19:11.
    23. Oliveira M, Campos M, Padilha J, et al. Exploring the family caregiving phenomenon in nursing documentation. Online Journal of Nursing Informatics. 2011;15(1).
    24. Finlayson M. Concerns about the future among older adults with multiple sclerosis. American Journal of Occupational Therapy. 2004;58:54-63.
    25. Kaba E, Bellou P, Iordanou P, et al. Problems experienced by hemodialysis patients in Greece. British Journal of Nursing. 2007;16:868-72.
    26. Kayes NM, McPherson KM, Taylor D, et al. Facilitators and barriers to engagement in physical activity for people with multiple sclerosis: a qualitative investigation. Disability and Rehabilitation. 2011;33:625-42.
    27. Alnazly EK. Burden and coping strategies among Jordanian caregivers of patients undergoing hemodialysis. Hemodialysis International. 2016;20:84-93.
    28. Towle A, Bainbridge L, Godolphin W, et al. Active patient involvement in the education of health professionals. Medical Education. 2010;44:64-74.
    29. Palmer AJ, Colman S, O’Leary B, et al. The economic impact of multiple sclerosis in Australia in 2010. Multiple Sclerosis Journal. 2013;19:1640-6.
    30. Dehghani A, Dehghan*Nayeri N, Ebadi A. Antecedents of coping with the disease in patients with multiple sclerosis: a qualitative content analysis. International Journal of Community Based Nursing and Midwifery. 2017;5:49-60.
    31. Langdon DW, Amato MP, Boringa J, et al. Recommendations for a brief international cognitive assessment for multiple sclerosis (BICAMS). Multiple Sclerosis Journal. 2012;18:891-8.
    32. Maghsoodi S, Mohammadi N. Qualitative analysis of the process of restoring social esteem by the women with multiple sclerosis. Quality & Quantity. 2018;52:2557-75.
    33. Nikbakht Nasrabadi A, Sabzevari S, Negahban Bonabi T. Iranian women’s experiences of health information seeking barriers: a qualitative study in Kerman. Iranian Red Crescent Medical Journal. 2015;17:e25156.
    34. Plow MA, Resnik L, Allen SM. Exploring physical activity behavior of persons with multiple sclerosis: a qualitative pilot study. Disability and Rehabilitation. 2009;31:1652-65.