Öz
Multiple skleroz, kronik ve dejeneratif bir hastalık olarak tanımlanmaktadır. Multiple skleroz tanılı çocuk hastalarda bazı belirti ve bulguların ortaya çıkması ve bu bulguların hastalığa özgü olmaması, belirsizliğin öncüleri olarak görülmektedir. Bu belirsizlikle büyümek çocuklarda ikincil sağlık problemlerine ve yetişkinlik döneminde bazı krizlerin ortaya çıkmasına neden olmaktadır. Bu olgu sunumunda, 14 yaşında multiple skleroz tanısı almış ve şu anda 21 yaşında olan hastanın, çocukluktan erişkinliğe yaşamış olduğu deneyimleri ortaya çıkartılması ve bu deneyimlerin Hastalıkta Belirsizlik Kuramına göre açıklanması amaçlanmıştır. Buna yönelik olarak, olgu ile iki kez derinlemesine bireysel görüşme yapılmış ve bu görüşmelerde yarı yapılandırılmış görüşme formu kullanılmıştır. Görüşmeler sonucu elde edilen veriler fenomenolojik kuramsal temelde ele alınmış ve Maxqda Plus v10 nitel veri analiz programı kullanılarak analiz edilmiştir. Sonuç olarak, olgunun, çocukluk döneminde yaşadığı belirsizliği tehlike olarak anlamlandırdığı ve öfke, kaçınma, içe kapanma, uyumsuzluk gibi etkisiz baş etme stratejilerini kullandığı belirlenmiştir. Erişkin dönemde ise, mevcut durumunu büyüme fırsatı olarak gördüğünü, hastalığı ve tedaviyi kabul ederek daha anlamlı bir yaşam sürmeye başladığını belirtmiştir.
Anahtar Kelimeler
Çocuk Multiple skleroz Hastalıkta belirsizlik kuramı Fenomolojik Nitel çalışma
Destekleyen Kurum
Yoktur.
Proje Numarası
Yoktur.
Teşekkür
Yoktur
Kaynakça
- Chitnis, T, Arnold, D.L, Banwell, B, Brück W, Ghezzi A, Giovannoni, G, et al., Trial of fingolimod versus ınterferon beta-1a in pediatric multiple sclerosis, The New England Journal of Medicine, 2018, 379(11), 1017–1027. https://doi.org/10.1056/NEJMoa1800149
- Hebert, D, Geisthardt, C, Hoffman, H, Insights and recommendations from parents receiving a diagnosis of pediatric multiple sclerosis for their child, Journal of Child Neurology, 2019, 34(8), 464–471.
- Spiro, D.B, Early onset multiple sclerosis: a review for nurse practitioners, Journal of pediatric health care: official publication of National Association of Pediatric Nurse Associates & Practitioners, 2012, 26(6), 399-408.
- Ünsal, M.A, Trial of fingolimod versus ınterferon beta-1a in pediatric multiple sclerosis, Turkish Journal of Neurology, 2019, 5(1), 50-51.
- Reinhardt, K, Weiss, S, Rosenbauer, J, Gärtner, J, Von Kries, R, Multiple sclerosis in children and adolescents: Incidence and clinical picture - new insights from the nationwide German surveillance (2009-2011), European Journal of Neurology, 2014, 21(4), 654–659.
- Conk, Z, Başbakkal, Z, Yardımcı, F, Çocuk Sağlığına Genel Bakış, Pediatri Hemşireliği, İçinde Conk Z, Başbakkal Z, Yılmaz BH, Bolışık B, (Ed), 2. Baskı, Akademisyen Tıp Kitabevi, Ankara, 2018, 33-43.
- Meleis, A.I, Sawyer, L.M, Im, E.O, Hilfinger, Messias, D,K, Schumacher, K, Experiencing transitions: an emerging middle-range theory, Advances in Nursing Science, 2000, 23(1), 12–28.
- Eppel-Meichlinger, J, Kobleder, A, Mayer, H, Developing a theoretical definition of self-organization: A principle-based concept analysis in the context of uncertainty in chronic illness, Nursing Forum, 2022, 57(5), 954–962.
- Yılmaz Yükse,l D, Yardımcı, F, Erdemir, E, Karabudak, R, Defining The Experiences Of Adolescent Patients With Multiple Sclerosis İntransition From Pediatric Care To Adult Care, Multiple Sclerosis and Related Disorders, 2022, 68, 104123, 1-6.
- Braun, V, Clarke, V, Using Thematic Analysis in Psychology, Qualitative Research in Psychology, 2006, 3(2), 77–101.
- Tong, A, Sainsbury, P, Craig, J, Consolidated criteria for reporting qualitative research (COREQ): A 32-item checklist for interviews and focus groups, Journal of the International Society for Quality in Health Care, 2007, 19(6), 349–357.
- Bora, T. S, Buldukoglu, K, Using the uncertainty in illness theory to provide care for the caregiver: A case report, Journal of Psychıatrıc Nursıng, 2020, 11(1), 70-77.
- Zhang, Y, Uncertainty in illness: Theory review, application, and extension, Oncology Nursing Forum, 2017, 44(6), 645- 649.
- Lindmark, U, Bülow, P, H, Mårtensson, J, Rönning, H, & A.D.U.L.T Research Group, The use of the concept of transition in different disciplines within health and social welfare: An integrative literature review, Nursing Open, 2019, 6(3), 664–675.
- Ostlie, I. L, Dale, O, Möller, A, From childhood to adult life with juvenile idiopathic arthritis (JIA): a pilot study, Disability and Rehabilitation, 2007, 29(6), 445–452.
- Fegran, L, Hall, E.O, Uhrenfeldt, L, Aagaard, H, Ludvigsen, M.S. Adolescents’ and young adults’ transition experiences when transferring from paediatric to adult care: a qualitative metasynthesis, International Journal of Nursing Studies, 2014, 51(1), 123–135.
Öz
Multiple sclerosis is defined as a chronic and degenerative disease. Pediatric patients with multiple sclerosis are considered uncertain precursors of some of the sign and symptoms dominance of this group. Growing up with this uncertainty, without knowing what the outcome will be causes secondary health problems for children and some crises in their adulthood. In this case study, past experiences of a patient, from childhood to adulthood, who was diagnosed with sclerosis at the age of 14 and is now 21 years old, are revealed, and these experiences are explained according to the Uncertainty in Illness Theory. For this purpose, the individual interview done twice with the case and a semi-structured interview form were used. The phenomenological theoretical basis obtained as a result of the interviews was handled and analyzed through the Maxqda Plus v10 qualitative data analysis program. As a result, our case interpreted uncertainty as a danger for childhood, and used ineffective coping strategies such as anger, avoidance, introversion, and disharmony. To sum up, the case considered her current situation as an opportunity to grow up and started to lead a more meaningful life by accepting the disease and treatment.
Anahtar Kelimeler
Child Multiple sclerosis Uncertainty theory in disease Phenomenological Qualitative study
Proje Numarası
Yoktur.
Kaynakça
- Chitnis, T, Arnold, D.L, Banwell, B, Brück W, Ghezzi A, Giovannoni, G, et al., Trial of fingolimod versus ınterferon beta-1a in pediatric multiple sclerosis, The New England Journal of Medicine, 2018, 379(11), 1017–1027. https://doi.org/10.1056/NEJMoa1800149
- Hebert, D, Geisthardt, C, Hoffman, H, Insights and recommendations from parents receiving a diagnosis of pediatric multiple sclerosis for their child, Journal of Child Neurology, 2019, 34(8), 464–471.
- Spiro, D.B, Early onset multiple sclerosis: a review for nurse practitioners, Journal of pediatric health care: official publication of National Association of Pediatric Nurse Associates & Practitioners, 2012, 26(6), 399-408.
- Ünsal, M.A, Trial of fingolimod versus ınterferon beta-1a in pediatric multiple sclerosis, Turkish Journal of Neurology, 2019, 5(1), 50-51.
- Reinhardt, K, Weiss, S, Rosenbauer, J, Gärtner, J, Von Kries, R, Multiple sclerosis in children and adolescents: Incidence and clinical picture - new insights from the nationwide German surveillance (2009-2011), European Journal of Neurology, 2014, 21(4), 654–659.
- Conk, Z, Başbakkal, Z, Yardımcı, F, Çocuk Sağlığına Genel Bakış, Pediatri Hemşireliği, İçinde Conk Z, Başbakkal Z, Yılmaz BH, Bolışık B, (Ed), 2. Baskı, Akademisyen Tıp Kitabevi, Ankara, 2018, 33-43.
- Meleis, A.I, Sawyer, L.M, Im, E.O, Hilfinger, Messias, D,K, Schumacher, K, Experiencing transitions: an emerging middle-range theory, Advances in Nursing Science, 2000, 23(1), 12–28.
- Eppel-Meichlinger, J, Kobleder, A, Mayer, H, Developing a theoretical definition of self-organization: A principle-based concept analysis in the context of uncertainty in chronic illness, Nursing Forum, 2022, 57(5), 954–962.
- Yılmaz Yükse,l D, Yardımcı, F, Erdemir, E, Karabudak, R, Defining The Experiences Of Adolescent Patients With Multiple Sclerosis İntransition From Pediatric Care To Adult Care, Multiple Sclerosis and Related Disorders, 2022, 68, 104123, 1-6.
- Braun, V, Clarke, V, Using Thematic Analysis in Psychology, Qualitative Research in Psychology, 2006, 3(2), 77–101.
- Tong, A, Sainsbury, P, Craig, J, Consolidated criteria for reporting qualitative research (COREQ): A 32-item checklist for interviews and focus groups, Journal of the International Society for Quality in Health Care, 2007, 19(6), 349–357.
- Bora, T. S, Buldukoglu, K, Using the uncertainty in illness theory to provide care for the caregiver: A case report, Journal of Psychıatrıc Nursıng, 2020, 11(1), 70-77.
- Zhang, Y, Uncertainty in illness: Theory review, application, and extension, Oncology Nursing Forum, 2017, 44(6), 645- 649.
- Lindmark, U, Bülow, P, H, Mårtensson, J, Rönning, H, & A.D.U.L.T Research Group, The use of the concept of transition in different disciplines within health and social welfare: An integrative literature review, Nursing Open, 2019, 6(3), 664–675.
- Ostlie, I. L, Dale, O, Möller, A, From childhood to adult life with juvenile idiopathic arthritis (JIA): a pilot study, Disability and Rehabilitation, 2007, 29(6), 445–452.
- Fegran, L, Hall, E.O, Uhrenfeldt, L, Aagaard, H, Ludvigsen, M.S. Adolescents’ and young adults’ transition experiences when transferring from paediatric to adult care: a qualitative metasynthesis, International Journal of Nursing Studies, 2014, 51(1), 123–135.
Ayrıntılar
| Birincil Dil | Türkçe |
|---|---|
| Konular | Hemşirelik |
| Bölüm | Olgu Sunumu |
| Yazarlar | |
| Proje Numarası | Yoktur. |
| Yayımlanma Tarihi | 31 Mart 2023 |
| Yayımlandığı Sayı | Yıl 2023 Cilt: 10 Sayı: 1 |
