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تجربه زیسته افراد مبتلا به میاستنی | ||
روانشناسی سلامت | ||
دوره 11، شماره 43، آذر 1401، صفحه 107-130 اصل مقاله (1.07 M) | ||
نوع مقاله: علمی- پژوهشی | ||
شناسه دیجیتال (DOI): 10.30473/hpj.2022.60284.5299 | ||
نویسندگان | ||
محجوبه میرناصری1؛ مونا چراغی* 2؛ لیلی پناغی3 | ||
1کارشناس ارشد، گروه مشاوره توانبخشی، دانشگاه شهید بهشتی. | ||
2دکتری، گروه روانشناسی بالینی، دانشگاه شهید بهشتی. | ||
3دانشیار، گروه پزشکی اجتماعی، دانشگاه شهید بهشتی. | ||
چکیده | ||
مقدمه: بیماری خودایمنی است که منجر به اختلال در محل اتصالات عصبی عضلانی میشود. ضعف بی ثبات در اثر حرکت، مشخصه این بیماری است. از آنجا که میاستنی یک بیماری مزمن با عوارض ناتوانکننده و پیشرفت غیرقابلپیشبینی است واکنشهای روانشناختی در این بیماران قابل انتظار است. بنابراین پژوهش حاضر بررسی تجربه زیسته افراد مبتلا به میاستنی میباشد تا از دیدگاه بیماران به مسائل روانشناختی آنها بنگرد و زمینهای برای درک بهتر مسائل آنان برای متخصصان را فراهم کند. روش: در این مطالعه با 11 نفر از افراد مبتلا به میاستنی مصاحبه عمیق نیمه ساختاریافته انجام گرفت که مصاحبهها با روش کلایزی تحلیل شدند. مطالعه حاضر به روش کیفی از نوع پدیدارشناسی توصیفی میباشد. یافتهها: این مطالعه شامل 4 خوشه اصلی شامل: 1) تجربه استفاده از خدمات تخصصی پزشکی، 2) تاثیرات درونی و بیرونی بیماری، 3) روشهای کنارآمدن، 4) دوران رضایتمندی بعد از کنترل بیماری بود. نتیجهگیری: نتایج بهدستآمده نشان داد ناتوانیها و محدودیتها و شرایط غیرقابلپیشبینی زندگی منجر به به ارزیابی منفی افراد از خود شده است و این موضوع منجر کاهش احساس کنترل ادراکشده آنها میشود. بهدین ترتیب زمینه برای افزایش هیجانات منفی از جمله افسردگی، اضطراب و استرس افزایش می یابد. از سوی دیگر بسیار از بیماران پس کنارآمدن با بیماری تجربه رشد پس از ضربه را تجربه کرده اند. | ||
کلیدواژهها | ||
بیماری خودایمنی؛ بیماری نادر؛ تجربه زیسته؛ راههای کنارآمدن؛ میاستنی | ||
عنوان مقاله [English] | ||
Lived Experience of People with Myasthenia Gravis | ||
نویسندگان [English] | ||
mahjube mirnaseri1؛ mona cheraghi2؛ leili panaghi3 | ||
1M.A in Rehabilitation Counseling, Shahid Beheshti University | ||
2Ph.D in Clinical Psychology, Shahid Beheshti University. | ||
3Associate Professor, Department of Social Medicine, Shahid Beheshti University. | ||
چکیده [English] | ||
Objective: Myasthenia is an autoimmune disease that leads to disorder of the neuromuscular junctions. Unstable weakness due to movement is characteristic of this disease. Because myasthenia is a chronic disease with debilitating complications and unpredictable progression, psychological reactions are expected in these patients. Therefore, the present study examines the lived experience of people with myasthenia to look at their psychological issues from the perspective of patients. To provide a platform for professionals to better understand their issues. Method: In this study, 11 people with myasthenia had in-depth semi-structured interviews, which were analyzed by colaizzi method. The present study is a qualitative method of descriptive phenomenology. Findings: This study included 4 main clusters including: 1) experience of using specialized medical services, 2) internal and external effects of the disease, 3) coping methods, 4) satisfaction period after disease control. Conclusion: The results showed that disabilities and limitations and unpredictable living conditions lead to a decrease in the perceived control in individuals and this leads to a negative self-assessment of individuals and increases negative emotions such as depression, anxiety and stress. many patients with post-traumatic stress disorder have experienced post-traumatic growth. | ||
کلیدواژهها [English] | ||
Autoimmune disease, Rare disease, lived experience, copping methods, Psychological problems Myasthenia | ||
مراجع | ||
کرسول، جان دبلیو (2007). پویش کیفی و طرح پژوهش. ترجمه حسن داناییفر و حسین کاظمی (1396) . تهران: انتشارات صفار.
Andersen, J. B., Heldal, A. T., Engeland, A., & Gilhus, N. E. (2014). Myasthenia gravis epidemiology in a national cohort; combining multiple disease registries. Acta Neurologica Scandinavica, 129, 26-31. Aragones, J. M., Altimiras, J., Roura, P., Alonso, F., Bufill, E., Munmany, A., ... & Illa, I. (2017). Prevalence of myasthenia gravis in the Catalan county of Osona. Neurología (English Edition), 32(1), 1-5. Ambrosio, L., Senosiain García, J. M., Riverol Fernández, M., Anaut Bravo, S., Díaz De Cerio Ayesa, S., Ursúa Sesma, M. E., ... & Portillo, M. C. (2015). Living with chronic illness in adults: a concept analysis. Journal of Clinical Nursing, 24(17-18), 2357-2367. Boyce, C., & Neale, P. (2006). Conducting In-Depth Interview: A Guide for Designi and Conducting In-Depth Interviews for Evaluation Input. Watertown: Pathfinder International Tool Series. Bosma, H., Van Jaarsveld, C. H., Tuinstra, J., Sanderman, R., Ranchor, A. V., Van Eijk, J. T., & Kempen, G. I. (2005). Low control beliefs, classical coronary risk factors, and socio-economic differences in heart disease in older persons. Social Science & Medicine (1982), 60(4), 737-745. doi:S0277953604002850. Bogdan, A., Barnett, C., Ali, A., AlQwaifly, M., Abraham, A., Mannan, S., ... & Bril, V. (2020). Chronic stress, depression and personality type in patients with myasthenia gravis. European Journal of Neurology, 27(1), 204-209. Chen, Y. T., Shih, F. J., Hayter, M., Hou, C. C., & Yeh, J. H. (2013). Experiences of living with Myasthenia Gravis: A qualitative study with Taiwanese people. Journal of Neuroscience Nursing, 45(2), E3-E10. Colaizzi, P. F. (1978). Psychological research as the phenomenologist views it. Carr, A. S., Cardwell, C. R., McCarron, P. O., & McConville, J. (2010). A systematic review of population based epidemiological studies in Myasthenia Gravis. BMC neurology, 10(1), 46. Chen, Y. T., Chang, Y., Chiu, H. C., & Yeh, J. H. (2011). Psychosocial aspects in myasthenic patients treated by plasmapheresis. Journal of neurology, 258(7), 1240-1246. EC, W. J. K. R., Nicole LeBlanc RN, M., & Nicolle, M. W. (2016). Hope, coping, and quality of life in adults with myasthenia gravis. Canadian journal of neuroscience nursing, 38(1), 56. Ehsan, S., Amirzargar, A., Yekaninejad, M. S., Mahmoudi, M., Mehravar, S., Moradi, B., & Nafissi, S. (2015). Association of HLA class II (DRB1, DQA1, DQB1) alleles and haplotypes with myasthenia gravis and its subgroups in the Iranian population. Journal of the neurological sciences, 359(1-2), 335-342. Fisher, J., Parkinson, K., & Kothari, M. J. (2003). Self-reported depressive symptoms in myasthenia gravis. Journal of clinical neuromuscular disease, 4(3), 105-108. Gallacher, R. (2017). Altered body image. Nurs stand. 31(50):64-65. House, J. S., Landis, K. R., & Umberson, D. (1988). Social relationships and health. Science, 241(4865), 540-545. Hehir, M. K., & Silvestri, N. J. (2018). Generalized myasthenia gravis: Classification, clinical presentation, natural history, and epidemiology. Neurologic clinics, 36(2), 253-260. Iyigün, T., Kaya, M., Gülbeyaz, S. Ö., Fıstıkçı, N., Uyanık, G., Yılmaz, B., ... & Erkanlı, K. (2017). Patient body image, self-esteem, and cosmetic results of minimally invasive robotic cardiac surgery. International Journal of Surgery, 39, 88-94. Infurna, F. J., Ram, N., & Gerstorf, D. (2013). Level and change in perceived control predict 19-year mortality: Findings from the americans' changing lives study. Developmental Psychology, 49(10), 1833-1847. doi:10.1037/a0031041. Jeong, A., Shin, D. W., Kim, S. Y., Yang, H. K., Shin, J. Y., Park, K., ... & Park, J. H. (2016). The effects on caregivers of cancer patients' needs and family hardiness. Psycho‐Oncology, 25(1), 84-90.Keesey, J. C. (1999). Does myasthenia gravis affect the brain?. Journal of the neurological sciences, 170(2), 77-89. Jeong, A., Min, J. H., Kang, Y. K., Kim, J., Choi, M., Seok, J. M., & Kim, B. J. (2018). Factors associated with quality of life of people with Myasthenia Gravis. PloS one, 13(11), e0206754. Jeong, A., Shin, D. W., Kim, S. Y., Yang, H. K., & Park, J. H. (2016). Avoidance of cancer communication, perceived social support, and anxiety and depression among patients with cancer. Psycho‐oncology, 25(11), 1301-1307. Krause-Bachand, J., & Koopman, W. (2008). Living with oculopharyngeal muscular dystrophy: a phenomenological study. Canadian journal of neuroscience nursing, 30(1), 35-39. Kotan, V. O., Kotan, Z., AYDIN, B., TAŞKAPILIOĞLU, Ö., Karli, H. N., Yalvac, H. D., ... & Kirli, S. (2016). Psychopathology, Psychosocial Factors and Quality of Life in Patients with Myasthenia Gravis. Journal of Neurological Sciences, 33(3). Keer-Keer, T. (2013). The lived experience of adults with myasthenia gravis: A phenomenological study (Doctoral dissertation, University of Otago). Kohler,W. (2007). Psychosocial aspects in patients with myasthenia gravis. Journal of Neurology, 254 (Suppl 2), II/90YII92. Larsen, P. D. (2006). Chronicity. In I. M. Lubkin & P. D. Larsen (Eds.), Chronic illness:Impact and interventions (pp. 3-22). Sudbury, MA: Jones and Bartlett. Leonardi, M., Raggi, A., Antozzi, C., Confalonieri, P., Maggi, L., Cornelio, F., & Mantegazza, R. (2010). The relationship between health, disability and quality of life in myasthenia gravis: results from an Italian study. Journal of neurology, 257(1), 98-102. LaDonna, K. A. (2011). A literature review of studies using qualitative research to explore chronic neuromuscular disease. Journal of Neuroscience Nursing, 43(3), 172-182. Martin, R. D., & Flegenheimer, W. V. (1971). Psychiatric aspects of the management of the myasthenic patient. The Mount Sinai journal of medicine, New York, 38(6), 594-601. Mooney, C. J. (2015). Perceived control, chronic stress, and geriatric frailty: explicating frailty's psychosocial etiology. University of Rochester. Mamarabadi, M., Razjouyan, H., & Moghaddasi, M. (2011). Hypothyroidism, the main thyroid dysfunction in Iranian patients with myasthenia gravis: A case serie. Iranian journal of neurology, 10(1-2), 22. MacKenzie, K. R., Martin, M. J., & Howard, F. M. (1969). Myasthenia gravis: Psychiatric concomitants. Canadian Medical Association Journal, 100, 988-991. Mendo-Lázaro, S., Polo-del-Río, M. I., Amado-Alonso, D., Iglesias-Gallego, D., & León-del-Barco, B. (2017). Self-concept in childhood: the role of body image and sport practice. Frontiers in psychology, 8, 853. McGrogan, A., Sneddon, S., & De Vries, C. S. (2010). The incidence of myasthenia gravis: a systematic literature review. Neuroepidemiology, 34(3), 171-183. Notash, A. Y., Salimi, J., Ramezanali, F., Sheikhvatan, M., & Habibi, G. (2009). Clinical features, diagnostic approach, and therapeutic outcome in myasthenia gravis patients with thymectomy. Acta Neurol Taiwan, 18(1), 21-5. Shosha, G. A. (2012). Employment of Colaizzi's strategy in descriptive phenomenology: A reflection of a researcher. European Scientific Journal, 8(27). Suzuki, Y., Utsugisawa, K., Suzuki, S., Nagane, Y., Masuda, M., Kabasawa, C., ... & Suzuki, N. (2011). Factors associated with depressive state in patients with myasthenia gravis: a multicentre cross-sectional study. BMJ open, 1(2), e000313. Smith, C. A., Dobbins, C. J., & Wallston, K. A. (1991). The mediational role of perceived competence in psychological adjustment to rheumatoid arthritis 1. Journal of Applied Social Psychology, 21(15), 1218-1244. Seyfari, B., Fatehi, F., Shojaiefard, A., Jafari, M., Ghorbani-Abdehgah, A., Nasiri, S., ... & Mir, A. (2018). Clinical outcome of thymectomy in myasthenia gravis patients: A report from Iran. Iranian journal of neurology, 17(1), 1. Sitek, E. J., Bilicska, M. M., Wieczorek, D., & Nyka, W. M. (2009). Neuropsychological assessment in myasthenia gravis. Neurological Science, 30,9 -14. Paul, R. H., & García-Egan, P. (2018). Predictors of Psychological Health in Myasthenia Gravis. In Myasthenia Gravis and Related Disorders (pp. 299-306). Humana Press, Cham. Polit, D. F., & Beck, C. T. (2014). Essentials of nursing research: appraising evidence for nursing practice. 8th ed. Philadelphia: Wolters Kluwer Health /Lippincott Williams & Wilkins. PHILLIPS, L. H. (2003). The epidemiology of myasthenia gravis. Annals of the New York Academy of Sciences, 998(1), 407-412. Tollefson, G. D. (1981). Distinguishing myasthenia gravis from conversion. Psychosomatic, 22(7), 611-621. Richards, H. S., Jenkinson, E., Rumsey, N., & Harrad, R. A. (2014). The psychosocial impact of ptosis as a symptom of myasthenia gravis: a qualitative study. Orbit, 33(4), 263-269. Raggi, A., Leonardi, M., Mantegazza, R., Casale, S., & Fioravanti, G. (2010). Social support and self-efficacy in patients with Myasthenia Gravis: a common pathway towards positive health outcomes. Neurological sciences, 31(2), 231-235. World Health Organization. (2006). WHO Collaborating Centre for Drug Statistics Methodology. Norwegian Institute of Public Health. Anatomical-Therapeutic-Chemical Classification Index (ATC, 2006). Wirihana, L., Welch, A., Williamson, M., Christensen, M., Bakon, S., & Craft, J. (2018). Using Colaizzi’s method of data analysis to explore the experiences of nurse academics teaching on satellite campuses. Nurse Researcher,25(4), 30. Wilkinson, H. R., & Nair, R. D. (2013). The psychological impact of the unpredictability of multiple sclerosis: a qualitative literature meta-synthesis. British Journal of Neuroscience Nursing, 9, 172-178. http://dx.doi.org/10.12968/bjnn.2013.9.4.172 Ybarra, M. I., Kummer, A., Frota, E. R. C., Oliveira, J. T. D., Gomez, R. S., & Teixeira, A. L. (2011). Psychiatric disorders in myasthenia gravis. Arquivos de Neuro-psiquiatria, 69(2A), 176-179. | ||
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