Kontakt 2017, 19(1):e17-e23 | DOI: 10.1016/j.kontakt.2016.12.001

The care burden and social support levels of caregivers of patients with multiple sclerosisNursing - Original article

Nuray Dayapoğlu*, Mehtap Tan
Atatürk University, Faculty of Health Sciences, Department of Medical Nursing, Erzurum, Turkey

Aim: This study aims to identify the relationship between social support, level of disability of patients and burden of care perceived by caregivers of individuals with multiple sclerosis.

Methods: This descriptive and cross-sectional study was conducted with family caregivers of patients with multiple sclerosis admitted to the neurology clinic of a university hospital in eastern Turkey. Of the family caregivers of patients with MS, 98 family members participated in the study. The study data were collected using the "Zarit Caregiver Burden Inventory (ZCBI)", "Expanded Disability Status Scale (EDSS)" and "Multidimensional Scale of Perceived Social Support (MSPSS)".

Results: The mean burden of care score of the family members was 30.67 ± 15.66, and the mean social support score was found to be 54.88 ± 20.02. A negative significant correlation was found between the mean social support and burden of care scores of caregivers (r = -0.38, p < 0.01). Furthermore, a positive correlation between mean burnout scores of caregivers and the loss of ability of the patients was found (r = 0.32, p < 0.01).

Conclusion: The burden of care decreases as the social support perceived by the caregivers increases. The burden of caregivers increases with the increasing disability of the patients.

Keywords: Multiple sclerosis; Caregivers; Burden; Social support; Disability

Received: July 25, 2016; Revised: October 31, 2016; Accepted: December 8, 2016; Published: March 28, 2017  Show citation

ACS AIP APA ASA Harvard Chicago Chicago Notes IEEE ISO690 MLA NLM Turabian Vancouver
Dayapoğlu N, Tan M. The care burden and social support levels of caregivers of patients with multiple sclerosis. Kontakt. 2017;19(1):e17-23. doi: 10.1016/j.kontakt.2016.12.001.
Share...
Download citation
  • BibTeX (.bib)
  • Bookends (.ris)
  • EasyBib (.ris)
  • EndNote (.enw)
  • EndNote 8 (.xml)
  • ISI WoS (.isi)
  • Medlars (.medlars)
  • Mendeley (.ris)
  • MODS (.xml)
  • Papers (.ris)
  • RefWorks (.txt)
  • RefManager (.ris)
  • RIS (.ris)
  • MS Word (.xml)
  • Zotero (.ris)
    • Open full article

    References

    1. Bakshi R. Fatigue associated with multiple sclerosis: Diagnosis, impact and management. Mult Scler 2003;9(3):219-27. Go to original source... Go to PubMed...
    2. Mollaoglu M. Multiple Skleroz ve Bakim. In: Durna Z (Eds). Kronik Hastaliklar ve Bakim. Istanbul: Nobel Medical Publishing; 2012, pp. 261-76.
    3. Woodward S, Mestecky AM. Neuroscience Nursing. Evidence-Based Practice. Oxford: Wiley-Blackwell; 2011.
    4. Terzi M, Ünal AN. Multipl Skleroz'un Orta Karadeniz Bölgesi'ndeki Prevelansi ve Hastalarin Demografik Özellikleri. Erişim tarihi: 21 Mayis 2013. [online] [cit. 2013-05-21]. Available from: http://www.samsunsempozyumu.org/Makaleler/1187417715_06_Yrd.Do%c3%a7.Dr.Murat%20Terzi.pdf
    5. Einarsson U, Gottberg K, Fredrikson S, von Koch L, Holmqvist LW. Activities of daily living and social activities in people with multiple sclerosis in Stockholm County. Clin Rehabil 2006;20(6):543-51. Go to original source... Go to PubMed...
    6. Reinhard SC, Given B, Huhtala Petlick N, Bemis A. Supporting family caregivers in providing care, family caregiving-caregiver assessment. In: Hughes RG (Ed.). Patient safety and quality: An evidence-based handbook for nurses. Rockville: Agency for Healthcare Research and Quality; 2008, pp. 1-64.
    7. Minden SL, Frankel D, Hadden LS, Srinath KP, Perloff JN. Disability in elderly people with multiple sclerosis: an analysis of baseline data from the Sonya Slifka longitudinal multiple sclerosis study. Neuro Rehabil 2004;19(1):55-67. Go to original source...
    8. Buchanan RJ, Radin D, Chakravorty B, Tyry T. Informal care giving to more disabled people with multiple sclerosis. Disabil Rehabil 2009;31(15):1244-56. Go to original source... Go to PubMed...
    9. Kucukguclu O, Esen A, Yener G. The reliability and validity of the caregiver burden inventory in Turkey. Journal of Neurological Science 2009;26:60-73.
    10. Pozzilli C, Palmisano L, Mainero C, Tomassini V, Marinelli F, Ristori G et al. Relationship between emotional distress in caregivers and health status in persons with multiple sclerosis. Mult Scler 2004;10(4):442-6. Go to original source... Go to PubMed...
    11. Alshubaili AF, Ohaeri JU, Awadalla AW, Mabrouk AA. Family caregiver quality of life in multiple sclerosis among Kuwaitis: a controlled study. BMC Health Serv Res 2008;8:206. Go to original source... Go to PubMed...
    12. Buhse M. Assessment of caregiver burden in families of persons with multiple sclerosis. Journal Neurosci Nurs 2008;40(1):25-31. Go to original source... Go to PubMed...
    13. Figved N, Myhr KM, Larsen JP, Aarsland D. Caregiver burden in multiple sclerosis: the impact of neuropsychiatric symptoms. J Neurol Neurosurg Psychiat 2007;78(10):1097-102. Go to original source... Go to PubMed...
    14. Buchanan RJ, Radin D, Huang C. Burden among male caregivers assisting people with multiple sclerosis. Gender med 2010;7(6):637-46. Go to original source... Go to PubMed...
    15. Rivera-Navarro J, Benito-León J, Oreja-Guevara C, Pardo J, Bowakim Dib W, Orts E, Belló M and Caregiver Quality of Life in Multiple Sclerosis (CAREQOL-MS) Study Group. Burden and health-related quality of life of Spanish caregivers of persons with multiple sclerosis. Mult Scler 2009;15(11):1347-55. Go to original source... Go to PubMed...
    16. Khan F, Pallant J, Brand C. Caregiver strain and factors associated with caregiver self-efficacy and quality of life in a community cohort with multiple sclerosis. Disabil Rehabil 2007;29(16):1241-50. Go to original source... Go to PubMed...
    17. Kouzoupis AB, Paparrigopoulos T, Soldatos M, Papadimitriou GN. The family of the multiple sclerosis patient: A psychosocial perspective. Int Rev Psychiatr 2010;22(1):83-9. Go to original source... Go to PubMed...
    18. Pearlin LI, Mullan JT, Semple SJ, Skaff MM. Caregiving and the stress process: an overview of concepts and their measures. Gerontologist 1990;30(5):583-94. Go to original source... Go to PubMed...
    19. Sahin D. Social Support and Health. In: Okyavuz ÜH (eds). Health psychology. Ankara: Turkish Psychologists Association Publications; 1999, pp.79-106.
    20. Tutar H. Management in crisis and stress environment. Istanbul: Life Publications; 2000.
    21. Zarit SH, Orr NK, Zarit JM. Understanding the stress of caregivers: Planning an intervention. In: Zarit SH, Orr N, Zarit J (eds). Hidden victims of alzheimer's disease: Families under stress. New York: NYU Press; 1985, pp. 69-86.
    22. Ozer N, Yurttaş A, Akyil RÇ. Psychometric evaluation of the Turkish version of the Zarit Burden Interview in family caregivers of inpatients in medical and surgical clinics. J Transc Nurs 2012;23(1):65-71. Go to original source... Go to PubMed...
    23. Zimet GD, Dahlem NW, Zimet SG, Farley GK. The multidimensional scale of perceived social support. J Pers Assess 1988;52:30-41. Go to original source...
    24. Eker D, Arkar H, Yaldiz H. Factorial structure, validity, and reliability of revised form of the multidimensional scale of perceived social support. Turk Psikiyatri Derg 2001;12(1):17-25. Go to original source...
    25. Rudick RA, Cohen JA, Weinstock-Guttman B, Kinkel RP, Ransohoff RM. Management of multiple sclerosis. N Engl J Med 1997;27(11):1604-11. Go to original source... Go to PubMed...
    26. Bulut S, Kiliç H, Demir CF. Yukari Firat Bölgesinde Multipl Skleroz Tanisi İle İzlenen Hastalarin Klinik ve Demografik Özellikleri. Firat Tip Dergisi 2011;16:84-90.
    27. Dedeoglu S. Eşitlik mi Ayrimcilik mi? Türkiye'de Sosyal Devlet, Cinsiyet Eşitliği Politikalari ve Kadin İstihdami. Çalişma ve Toplum 2009;2(21):41-54.
    28. Forbes A, While A, Mathes L. Informal care activities, care burden and health status in multiple sclerosis. Clin Rehabil 2007;21(6):563-75. Go to original source... Go to PubMed...
    29. Aronson KJ, Cleghorn G, Goldenberg E. Assistance arrangements and use of services among persons with multiple sclerosis and their caregivers. Disabil Rehabil 1996;18(7):354-61. Go to original source... Go to PubMed...
    30. Akkus Y. Multiple sclerosis patient caregivers: the relationship between their psychological and social needs and burden levels. Disabil Rehabil 2011;33(4):326-33. Go to original source... Go to PubMed...
    31. Waldron-Perrine B, Rapport LJ, Ryan KA, Telmet Harper K. Predictors of life satisfaction among caregivers of individuals with multiple sclerosis. Clin Neuropsychol 2009;23(3):462-78. Go to original source... Go to PubMed...
    32. Tan M. Social support and coping in Turkish patients with cancer. Cancer Nurs 2007;30(6):498-504. Go to original source... Go to PubMed...
    33. Greenwood N, Mackenzie A, Cloud GC, Wilson N. Informal carers of stroke survivors - factors influencing carers: a systematic review of quantitative studies. Disabil Rehabil 2008;30(18):1329-49. Go to original source... Go to PubMed...
    34. Patti F, Amato MP, Battaglia MA, Pitaro M, Russo P, Solaro C, Trojano M. Caregiver quality of life in multiple sclerosis: a multicentre Italian Study. Mult Scler 2007;13(3):412-19. Go to original source... Go to PubMed...
    35. Tuna M, Olgun N. The role of perceived social support on stroke patients' caregivers who have the burnout syndrome. Hacettepe University Faculty of Health Sciences Nursing Journal 2010;17(1):41-52.

    Return to the content