Factors affecting psychological problems in primary caregivers of People with Multiple Sclerosis: a qualitative study
DOI:
https://doi.org/10.22317/jcms.v6i6.846Keywords:
multiple Scleroses, primary caregiver, family caregiver, qualitative research, psychological burden.Abstract
Objectives: The present research aimed to explore factors affecting psychological problems among primary caregivers of individuals with Multiple Sclerosis (PCIMS).
Methods: The present qualitative research employed a content analysis approach and was conducted in Isfahan, Iran in 2018-19. The participants were selected through purposive sampling method. Semi-structured interviews were conducted to explore psychological problems involved in providing care to MS patients and the factors affecting them with 8 patients, 10 caregivers and 3 healthcare providers. Conventional content analysis was used to analyze the data.
Results: The acquired data were put in 4 main categories of “isolation and lonelinessâ€, “caregiver’s concernsâ€, “frustration and hopelessness†and “Disruption in the family foundationâ€, each with certain sub-categories.
Conclusion: The present results can be helpful to manage psychological disorders and the underlying factors of PCIMS. Thus, healthcare providers and policy-makers should consider these areas and make special attempts to improve the performance and conditions of these caregivers to maximize the quality of care provided.
References
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28. Masoudi R, Abedi HA, Abedi P, Mohammadianinejad SE. Iranian family caregivers’ challenges and issues in caring of multiple sclerosis patients: A descriptive explorative qualitative study. Iranian journal of nursing and midwifery research. 2014;19(4):416.
29. Fukui S. Information needs and the related variables of Japanese family caregivers of terminally ill cancer patients. Nursing & health sciences. 2004;6(1):29-36.
30. Given B, Sherwood PR, Given CW. What knowledge and skills do caregivers need? Journal of Social Work Education. 2008;44(sup3):115-23.
31. Courts NF, Newton AN, McNeal LJ. Husbands and wives living with multiple sclerosis. Journal of Neuroscience Nursing. 2005;37(1):20.
32. Obiwuru O, Joseph S, Liu L, Palomeque A, Tarlow L, Langer-Gould AM, et al. Perceptions of Multiple Sclerosis in Hispanic Americans: Need for Targeted Messaging. International journal of MS care. 2017;19(3):131-39.
33. Eriksson M, Svedlund M. 'The intruder': spouses' narratives about life with a chronically ill partner. Journal of clinical nursing. 2006;15(3):324-33. Epub 2006/02/10.
34. Boeije HR, Van Doorne-Huiskes A. Fulfilling a sense of duty: how men and women giving care to spouses with multiple sclerosis interpret this role. Community, Work & Family. 2003;6(3):223-44.
35. Rollero C. The experience of men caring for a partner with Multiple Sclerosis. Journal of Nursing Scholarship. 2016;48(5):482-9.
36. Schulz R, Sherwood PR. Physical and mental health effects of family caregiving. Journal of Social Work Education. 2008;44(sup3):105-13.
37. Coleman J, Rath L, Carey J. Multiple sclerosis and the role of the MS nurse consultant. Australian Nursing Journal: ANJ, The. 2001;9(3):CU1.
38. Sherman T, Rapport L, Hanks R, Ryan K, Keenan P, Khan O, et al. Predictors of well-being among significant others of persons with multiple sclerosis. Multiple Sclerosis Journal. 2007;13(2):238-49.
2. Gafari S, Khoshknab MF, Nourozi K, Mohamadi E. Informal caregivers' experiences of caring of multiple sclerosis patients: A qualitative study. Iranian journal of nursing and midwifery research. 2017;22(3):243.
3. Izadi S, Nikseresht A, Sharifian M, Sahraian MA, Jahromi AH, Aghighi M, et al. Significant increase in the prevalence of multiple sclerosis in iran in 2011. Iranian journal of medical sciences. 2014;39(2):152.
4. Buhse M. Assessment of caregiver burden in families of persons with multiple sclerosis. Journal of Neuroscience Nursing. 2008;40(1):25-31.
5. Navab E, Negarandeh R, Peyrovi H, Navab P. Stigma among I ranian family caregivers of patients with A lzheimer's disease: A hermeneutic study. Nursing & health sciences. 2013;15(2):201-6.
6. Masoudi R, Abedi H, Abedi P, Mohammadianinejad SE. The perspectives of Iranian patients with multiple sclerosis on continuity of care: a qualitative study. Journal of Nursing Research. 2015;23(2):145-52.
7. Galushko M, Golla H, Strupp J, Karbach U, Kaiser C, Ernstmann N, et al. Unmet needs of patients feeling severely affected by multiple sclerosis in Germany: A qualitative study. Journal of palliative medicine. 2014;17(3):274-81.
8. Boyd MA. Psychiatric nursing: Contemporary practice: lippincott Williams & wilkins; 2008.
9. McKeown L, Porter-Armstrong A, Baxter G. Caregivers of people with multiple sclerosis: experiences of support. Multiple Sclerosis Journal. 2004;10(2):219-30.
10. Figved N, Myhr K-M, Larsen J-P, Aarsland D. Caregiver burden in multiple sclerosis: the impact of neuropsychiatric symptoms. Journal of Neurology, Neurosurgery & Psychiatry. 2007;78(10):1097-102.
11. Caputo J, Pavalko EK, Hardy MA. The Longâ€Term Effects of Caregiving on Women's Health and Mortality. Journal of Marriage and Family. 2016;78(5):1382-98.
12. Corbin J, Strauss A. Basics of Qualitative Research: Techniques and Procedures for Developing Grounded Theory: SAGE Publications; 2014.
13. Speziale HS, Streubert HJ, Carpenter DR. Qualitative research in nursing: Advancing the humanistic imperative: Lippincott Williams & Wilkins; 2011.
14. Estebsari F, Taghdisi MH, Mostafaei D, Jamshidi E, Latifi M. Determining the factors contributing to quality of life of patients at the last stage of life: a qualitative study. Iranian Red Crescent Medical Journal. 2013;15(12).
15. Grbich C. Qualitative data analysis: An introduction: Sage; 2012.
16. Hsieh H-F, Shannon SE. Three approaches to qualitative content analysis. Qualitative health research. 2005;15(9):1277-88.
17. Guba EG. Criteria for assessing the trustworthiness of naturalistic inquiries. Educational Technology Research and Development. 1981;29(2):75-91.
18. Estebsari F, Taghdisi MH, Mostafaei D, Rahimi Z. Elements of healthy death: a thematic analysis. Medical journal of the Islamic Republic of Iran. 2017;31:24.
19. Shapiro J, Wiglesworth A, Morrison EH. Views on disclosing mistreatment: A focus group study of differences between people with MS and their caregivers. Multiple sclerosis and related disorders. 2013;2(2):96-102.
20. Masoudi R, Khayeri F, Rabiei L, Zarea K. A study of stigma among Iranian family caregivers of patients with multiple sclerosis: A descriptive explorative qualitative study. Applied Nursing Research. 2017;34:1-6.
21. Ghafari S, Fallahi-Khoshknab M, Nourozi K, Mohammadi E. Patients’ experiences of adapting to multiple sclerosis: a qualitative study. Contemporary nurse. 2015;50(1):36-49.
22. Abolhassani S, Yazdannik A, Taleghani F, Zamani A. Social aspects of multiple sclerosis for Iranian individuals. Disability and Rehabilitation. 2015;37(4):319-26.
23. Bogosian A, Moss-Morris R, Yardley L, Dennison L. Experiences of partners of people in the early stages of multiple sclerosis. Multiple Sclerosis Journal. 2009;15(7):876-84.
24. Mutch K. In sickness and in health: experience of caring for a spouse with MS. British Journal of Nursing. 2010;19(4):214-9.
25. Kouzoupis AB, Paparrigopoulos T, Soldatos M, Papadimitriou GN. The family of the multiple sclerosis patient: a psychosocial perspective. International review of psychiatry. 2010;22(1):83-9.
26. Heward K, Molineux M, Gough B. A grounded theory analysis of the occupational impact of caring for a partner who has multiple sclerosis. Journal of Occupational Science. 2006;13(2-3):188-97.
27. Cheung J, Hocking P. The experience of spousal carers of people with multiple sclerosis. Qualitative health research. 2004;14(2):153-66. Epub 2004/02/11.
28. Masoudi R, Abedi HA, Abedi P, Mohammadianinejad SE. Iranian family caregivers’ challenges and issues in caring of multiple sclerosis patients: A descriptive explorative qualitative study. Iranian journal of nursing and midwifery research. 2014;19(4):416.
29. Fukui S. Information needs and the related variables of Japanese family caregivers of terminally ill cancer patients. Nursing & health sciences. 2004;6(1):29-36.
30. Given B, Sherwood PR, Given CW. What knowledge and skills do caregivers need? Journal of Social Work Education. 2008;44(sup3):115-23.
31. Courts NF, Newton AN, McNeal LJ. Husbands and wives living with multiple sclerosis. Journal of Neuroscience Nursing. 2005;37(1):20.
32. Obiwuru O, Joseph S, Liu L, Palomeque A, Tarlow L, Langer-Gould AM, et al. Perceptions of Multiple Sclerosis in Hispanic Americans: Need for Targeted Messaging. International journal of MS care. 2017;19(3):131-39.
33. Eriksson M, Svedlund M. 'The intruder': spouses' narratives about life with a chronically ill partner. Journal of clinical nursing. 2006;15(3):324-33. Epub 2006/02/10.
34. Boeije HR, Van Doorne-Huiskes A. Fulfilling a sense of duty: how men and women giving care to spouses with multiple sclerosis interpret this role. Community, Work & Family. 2003;6(3):223-44.
35. Rollero C. The experience of men caring for a partner with Multiple Sclerosis. Journal of Nursing Scholarship. 2016;48(5):482-9.
36. Schulz R, Sherwood PR. Physical and mental health effects of family caregiving. Journal of Social Work Education. 2008;44(sup3):105-13.
37. Coleman J, Rath L, Carey J. Multiple sclerosis and the role of the MS nurse consultant. Australian Nursing Journal: ANJ, The. 2001;9(3):CU1.
38. Sherman T, Rapport L, Hanks R, Ryan K, Keenan P, Khan O, et al. Predictors of well-being among significant others of persons with multiple sclerosis. Multiple Sclerosis Journal. 2007;13(2):238-49.
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Published
2020-12-26
How to Cite
Sadeghi, B., Estebsari, F., Rassouli, M., & Ebadi, A. (2020). Factors affecting psychological problems in primary caregivers of People with Multiple Sclerosis: a qualitative study. Journal of Contemporary Medical Sciences, 6(6), 267–274. https://doi.org/10.22317/jcms.v6i6.846
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