Amaç: Bu araştırma afazili birey yakınlarının bilgi ve farkındalık düzeylerini, afaziye ilişkin yaşam deneyimlerini ve dil ve konuşma terapisine dair beklentilerini incelemeyi amaçlamaktadır.
Yöntem: Nitel araştırma deseni ile yürütülen bu çalışmaya 28 afazili birey yakını (15 kadın, 13 erkek) dahil edilmiştir. Veriler araştırmacılar tarafından geliştirilen yarı yapılandırılmış açık uçlu görüşmeler yoluyla toplanmıştır. Görüşmeler sessiz bir ortamda Zoom platformu üzerinden gerçekleştirilmiş ve katılımcıların izniyle kayıt altına alınmıştır. Görüşme süreleri 8 ila 24 dakika arasında değişiklik göstermiştir. Elde edilen veriler Braun ve Clarke’ın (2006) altı aşamalı tematik analiz yaklaşımı kullanılarak değerlendirilmiştir. Analiz sürecinde veriler kodlanmış, benzer içerikler bir araya getirilerek ana temalar ve alt temalar oluşturulmuştur. Araştırmanın raporlanmasında Birleşik Nitel Araştırma Raporlama Kriterleri (ing. Consolidated Criteria for Reporting Qualitative Research, COREQ) dikkate alınmıştır.
Bulgular: Verilerin tematik analizi sonucunda üç ana tema ve 11 alt tema belirlenmiştir: Afazi Bilgi ve Farkındalık Düzeyi (afaziye ilişkin bilgi, bilgilendirilme süreci), Afazi ile Yaşamak (yakınlar, afazili bireyler, ortak yaşam, duygular, başa çıkma ve stratejiler) ve Dil ve Konuşma Terapisi (terapi sürecinde bilgilendirilme, ödevlendirilme, terapi ile gelen değişim, terapi süreci ile ilgili beklentiler ve planlar). Bulgular katılımcıların çoğunun afazi hakkında sınırlı bilgiye sahip olduğunu ve bu durumun yetersizlik hissi ile duygusal yük oluşturduğunu göstermiştir. Afazi sonrasında hem bireysel hem de ortak yaşamda önemli değişimler yaşanmış; sosyal izolasyon, artan sorumluluklar ve iletişim güçlükleri öne çıkmıştır. Dil ve konuşma terapisi, katılımcılar için sürecin kritik bir destek unsuru olarak değerlendirilmiş ve iletişim becerilerinin gelişmesi yönünde güçlü beklentiler ifade edilmiştir.
Sonuç: Afazi tanısı sonrası yaşanan değişimler aile dinamiklerini derinden etkileyerek sosyal izolasyon ve yüksek stres düzeylerine yol açmaktadır. Bu nedenle afazili bireylerin müdahale süreçlerinde disiplinler arası ekip çalışması, profesyonel destek ve aile içi dayanışma önem taşımaktadır.
afazi, aile merkezli rehabilitasyon, bakım verenler, dil ve konuşma terapisi, psikososyal etkiler
Adikari, A., Hernandez, N., Alahakoon, D., Rose, M. L. & Pierce, J. E. (2023). From concept to practice: a scoping review of the application of AI to aphasia diagnosis and management. Disability and Rehabilitation, 46(7), 1288-1297. https://doi.org/10.1080/09638288.2023.2199463
Avent, J., Glista, S., Wallace, S., Jackson, J., Nishioka, J., & Yip, W. (2005). Family information needs about aphasia. Aphasiology, 19(3-5), 365-375. https://doi.org/10.1080/02687030444000813
Baker, C., Worrall, L., Rose, M., Hudson, K., Ryan, B., & O’Byrne, L. (2018). A systematic review of rehabilitation interventions to prevent and treat depression in post-stroke aphasia. Disability and rehabilitation, 40(16), 1870-1892. https://doi.org/10.1080/09638288.2017.1315181
Baker, C., Worrall, L., Rose, M., & Ryan, B. (2019). ‘It was really dark’: the experiences and preferences of people with aphasia to manage mood changes and depression. Aphasiology, 34(1), 19–46. https://doi.org/10.1080/02687038.2019.1673304
Bersano, A., Burgio, F., Gattinoni, M., & Candelise, L. (2009). Aphasia burden to hospitalised acute stroke patients: need for an early rehabilitation programme. International Journal of Stroke, 4(6), 443-447. https://doi.org/10.1111/j.1747-4949.2009.00349.x
Blom Johansson, M., Carlsson, M., Östberg, P., & Sonnander, K. (2022). Self-reported changes in everyday life and health of significant others of people with aphasia: a quantitative approach. Aphasiology, 36(1), 76-94. https://doi.org/10.1080/02687038.2020.1852166
Rady, M. C., Kelly, H., Godwin, J., Enderby, P., & Campbell, P. (2016). Speech and language therapy for aphasia following stroke. Cochrane Data Base of Systematic Reviews, 6. https://doi.org/10.1002/14651858.CD000425.pub4
Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101. https://doi.org/10.1191/1478088706qp063oa
Brown, K., Worrall, L., Davidson, B., & Howe, T. (2011). Living successfully with aphasia: Family members share their views. Topics in Stroke Rehabilitation, 18(5), 536-548. https://doi.org/10.1310/tsr1805-536
Brown, K., Worrall, L. E., Davidson, B., & Howe, T. (2012). Living successfully with aphasia: A qualitative meta-analysis of the perspectives of individuals with aphasia, family members, and speech-language pathologists. International Journal of Speech-Language Pathology, 14(2), 141-155. https://doi.org/10.3109/17549507.2011.632026
Cheng, B. B., Ryan, B., Copland, D. A., & Wallace, S. J. (2022). Prognostication in post-stroke aphasia: Speech pathologists’ clinical insights on formulating and delivering information about recovery. Disability and Rehabilitation, 44(18), 5046-5059. https://doi.org/10.1080/09638288.2021.1922514
Croteau, C., McMahon‐Morin, P., Le Dorze, G., & Baril, G. (2020). Impact of aphasia on communication in couples. International Journal of Language & Communication Disorders, 55(4), 547-557. https://doi.org/10.1111/1460-6984.12537
Cruice, M., Worrall, L., & Hickson, L. (2006). Perspectives of quality of life by people with aphasia and their family: Suggestions for successful living. Topics in Stroke Rehabilitation, 13(1), 14-24. https://doi.org/10.1310/4JW5-7VG8-G6X3-1QVJ
Denman, A. (1998). Determining the needs of spouses caring for aphasic partners. Disability and Rehabilitation, 20(11), 411-423. https://doi.org/10.3109/09638289809166103
Draper, B., Bowring, G., Thompson, C., Van Heyst, J., Conroy, P., & Thompson, J. (2007). Stress in caregivers of aphasic stroke patients: a randomized controlled trial. Clinical Rehabilitation, 21(2), 122-130. https://doi.org/10.1177/0269215506071251
Fotiadou, D., Northcott, S., Chatzidaki, A., & Hilari, K. (2014). Aphasia blog talk: How does stroke and aphasia affect a person’s social relationships? Aphasiology, 28(11), 1281-1300. https://doi.org/10.1080/02687038.2014.928664
Harmon, T. G. (2020). Everyday communication challenges in aphasia: Descriptions of experiences and coping strategies. Aphasiology, 34(10), 1270-1290. https://doi.org/10.1080/02687038.2020.1752906
Hersh, D., Worrall, L., Howe, T., Sherratt, S., & Davidson, B. (2011). SMARTER goalsetting in aphasia rehabilitation. Aphasiology, 26(2), 220–233. https://doi.org/10.1080/02687038.2011.640392
Hilton, R., Leenhouts, S., Webster, J., & Morris, J. (2014). Information, support and training needs of relatives of people with aphasia: Evidence from the literature. Aphasiology, 28(7), 797-822. https://doi.org/10.1080/02687038.2014.906562
Howe, T., Davidson, B., Worrall, L., Hersh, D., Ferguson, A., Sherratt, S., & Gilbert, J. (2012). ‘You needed to rehab… families as well’: family members’ own goals for aphasia rehabilitation. International Journal of Language & Communication Disorders, 47(5), 511-521. https://doi.org/10.1111/j.1460-6984.2012.00159.x
Kao, S. K., & Chan, C. T. (2024). Increased risk of depression and associated symptoms in poststroke aphasia. Scientific Reports, 14(1), 21352. https://doi.org/10.1038/s41598-024-72742-z
Kniepmann, K., & Cupler, M. H. (2014). Occupational changes in caregivers for spouses with stroke and aphasia. British Journal of Occupational Therapy, 77(1), 10-18. https://doi.org/10.4276/030802214X13887685335463
Knight, K, Worrall, L., & Rose, T. (2006) The provision of health information to stroke patients within an acute hospital setting: What actually happens and how do patients feel about it? Topics in Stroke Rehabilitation. 13(1), 78–97. https://doi.org/10.1310/FC6M-P7L0-W3XD-4WAE
Le Dorze, G., & Signori, F. H. (2010). Needs, barriers and facilitators experienced by spouses of people with aphasia. Disability and Rehabilitation, 32(13), 1073-1087. https://doi.org/10.3109/09638280903374121
Manders, E., Mariën, A., & Janssen, V. (2011). Informing and supporting partners and children of persons with aphasia: A comparison of supply and demand. Logopedics Phoniatrics Vocology, 36(4), 139-144. https://doi.org/10.3109/14015439.2011.562534
Matos, M. A. C., Jesus, L. M., & Cruice, M. (2014). Consequences of stroke and aphasia according to the ICF domains: Views of Portuguese people with aphasia, family members and professionals. Aphasiology, 28(7), 771-796. https://doi.org/10.1080/02687038.2014.906561
Michallet, B., Le Dorze, G., & Tétreault, S. (2001). The needs of spouses caring for severely aphasic persons. Aphasiology, 15(8), 731-747. https://doi.org/10.1080/02687040143000087
Michallet, B., Tétreault, S., & Le Dorze, G. (2003). The consequences of severe aphasia on the spouses of aphasic people: A description of the adaptation process. Aphasiology, 17(9), 835-859. https://doi.org/10.1080/02687030344000238
Moss, B., Northcott, S., Behn, N., Monnelly, K., Marshall, J., Thomas, S., Simpson, A., Goldsmith, K., McVicker, S., Flood, C., & Hilari, K. (2021). ‘Emotion is of the essence.… Number one priority’: A nested qualitative study exploring psychosocial adjustment to stroke and aphasia. International Journal of Language & Communication Disorders, 56(3), 594-608. https://doi.org/10.1111/1460-6984.12616
Off, C. A., Griffin, J. R., Murray, K. W., & Milman, L. (2019). Interprofessional caregiver education, training, and wellness in the context of a cohort model for aphasia rehabilitation. Topics in Language Disorders, 39(1), 5-28. https://doi.org/10.1097/TLD.0000000000000171
Ramazanu, S., Chisale, M. R., Baby, P., Wu, V. X., & Mbakaya, B. C. (2022). Meta‐synthesis of family communication patterns during post‐stroke vascular aphasia: Evidence to guide practice. Worldviews on Evidence‐Based Nursing, 19(4), 282-296. https://doi.org/10.1111/wvn.12580
Rayner, H., & Marshall, J. (2003). Training volunteers as conversation partners for people with aphasia. International Journal of Language & Communication Disorders, 38(2), 149-164. https://doi.org/10.1080/1368282021000060308
Rose, T. A., Balse, A., Osmond, S., Poon, A., Simons, N., & Wallace, S. J. (2018). Aphasia education: Speech-language pathologists’ perspectives regarding current and optimal practice. Aphasiology, 32(8), 967-988. https://doi.org/10.1080/02687038.2018.1472366
Rose, T. A., Wallace, S. J., & Leow, S. (2019). Family members’ experiences and preferences for receiving aphasia information during early phases in the continuum of care. International Journal of Speech-Language Pathology, 21(5), 470-482. https://doi.org/10.1080/17549507.2019.1651396
Rose, T., Worrall, L., Hickson, L., & Hoffmann, T. (2010). Do people with aphasia want written stroke and aphasia information? A verbal survey exploring preferences for when and how to provide stroke and aphasia information. Topics in Stroke Rehabilitation, 17(2), 79-98. https://doi.org/10.1310/tsr1702-79
Rose T. A., Worrall L. E., McKenna K. T., Hickson L. M., & Hoffmann T. C. (2009). Do people with aphasia receive written stroke and aphasia information? Aphasiology. 23(3), 364–392. https://doi.org/10.1080/02687030802568108
Shafer, J. S., Haley, K. L., & Jacks, A. (2023). Accessing information and adapting to the role of care partner for stroke survivors with aphasia during the early Covid-19 pandemic. Aphasiology, 37(6), 907-928. https://doi.org/10.1080/02687038.2022.2059055
Simmons-Mackie, N., Code, C., Armstrong, E., Stiegler, L., & Elman, R. J. (2002). What is aphasia? Results of an international survey. Aphasiology, 16(8), 837-848. https://doi.org/10.1080/02687030244000185
Simmons-Mackie N., & Kagan A. (2007). Application of the ICF in aphasia. Seminars in Speech Language, 28(4), 244–253. https://doi.org/10.1055/s-2007-986521
Simmons-Mackie, N., Kagan, A., Le Dorze, G., Shumway, E., & Chan, M. T. (2024). Aphasia and acute care: a qualitative study of family perspectives. Aphasiology, 1-13. https://doi.org/10.1080/02687038.2024.2373431
Simmons-Mackie, N., Kearns, K., & Potechin, G. (2005). Treatment of aphasia through family member training. Aphasiology, 19(6), 583-593. https://doi.org/10.1080/02687030444000408
Simmons-Mackie, N., Raymer, A., & Cherney, L. R. (2016). Communication partner training in aphasia: An updated systematic review. Archives of Physical Medicine and Rehabilitation, 97(12), 2202-2221. https://doi.org/10.1016/j.apmr.2016.03.023
Sjöqvist Nätterlund, B. (2010). Being a close relative of a person with aphasia. Scandinavian Journal of Occupational Therapy, 17(1), 18-28. https://doi.org/10.3109/11038120902833218
Smith, J. A., Flowers, P., & Larkin, M. (2009). Interpretative phenomenological analysis: Theory, Method and Research. SAGE Spaccavento, S., Craca, A., Del Prete, M., Falcone, R., Colucci, A., Di Palma, A., & Loverre, A. (2013). Quality of life measurement and outcome in aphasia. Neuropsychiatric Disease and Treatment, 10, 27-37. https://doi.org/10.2147/NDT.S52357
Tong, A., Sainsbury, P., & Craig, J. (2007). Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. International Journal for Quality in Health Care, 19(6), 349-357. https://doi.org/10.1093/intqhc/mzm042
Winkler, M., Bedford, V., Northcott, S., & Hilari, K. (2014). Aphasia blog talk: How does stroke and aphasia affect the carer and their relationship with the person with aphasia? Aphasiology, 28(11), 1301-1319. https://doi.org/10.1080/02687038.2014.928665
World Health Organization. (2001). International classification of functioning, disability and health: ICF. World Health Organization.
Worrall, L. (2019). The seven habits of highly effective aphasia therapists: The perspective of people living with aphasia. International Journal of Speech-Language Pathology, 21(5), 438-447. https://doi.org/10.1080/17549507.2019.1660804