Caregiver Burden And Quality Of Life Of Parents Of Children With Hemophilia
Özet
This academic text explores the multi-dimensional impact of chronic childhood illnesses, specifically hemophilia, on informal caregivers, focusing on caregiver burden and quality of life. Hemophilia, an X-linked recessive genetic disorder causing bleeding tendencies, places an immense physical, social, emotional, and economic strain on families, particularly mothers who predominantly shoulder caregiving duties. The subjective and objective components of caregiver burden arise from constant medical supervision, management of unpredictable bleeding episodes, joint pain, and potential treatment complications like factor inhibitors. These challenges lead to severe disruptions in caregivers' daily routines, forcing many to abandon careers, which induces significant financial distress and social isolation. Consequently, the caregivers' overall quality of life is heavily compromised, manifesting as chronic fatigue, depression, insomnia, and neglect of their personal well-being. Within a family-centered care framework, pediatric nurses fulfill a pivotal role. Beyond evaluating the child's physiological symptoms, they act as counselors and educators who comprehensively systematically assess caregiver burden using objective scales. Pediatric nurses establish vital social support networks, formulate tailored training programs for complex home care, and implement evidence-based interventions designed to minimize complications, maximize parental self-care, and ultimately restore the holistic well-being of the family unit.
Referanslar
Abdel-Rahman, R. A., Ismail, G. M., Sayed, H. A., Sharaa, H. M. (2015). Stressors and coping strategies among family caregivers having children with lymphoma at children’s cancer hospital Egypt. Med. J. Cairo Univ, 83 (1), (s. 35-43).
Alahan NA, Aylaz R, Yetiş G. (2015). Kronik Hastalığı olan çocuğa sahip ebeveynlerin bakım verme yükü. İnönü Üniversitesi Sağlık Bilimleri Dergisi, 4 (2): 1-5.
Berwig, M., Dichter, M.N., Albers, B., Wermke, K., Trutschel, D., Petersen, S.S., Halek, M. (2017). Feasibility and effectiveness of a telephone-based social support ıntervention for ınformal caregivers of people with dementia: study protocol of the Talking Time Project. BMC Health Services Research, 17, (s. 280).
Borjalilu, S., Shahidi, S., Mazaheri, M. A., Emami, A. H. (2016). Spiritual care training for mothers of children with cancer: Effects on quality of care and mental health of caregivers. Asian Pac J Cancer Prev, 17 (2), (s. 545-552).
Can, T. (2010). BAKAS caregiving outcomes scale’in (BAKAS bakım verme etki ölçeği) Türkçe’ye uyarlanması, geçerlilik ve güvenirliği (Yayınlanmamış doktora tezi). Pamukkale Üniversitesi Sağlık Bilimleri Enstitüsü, Denizli.
Çavuşoğlu H. (2019). Çocuk Sağlığı Hemşireliği, 13. Baskı. Ankara, Sistem Ofset Basımevi, 113-27.
Çevik Özdemir, H. N., & Şenol, S. (2019). Bakım yükü değerlendirme ölçeklerine sistematik bir bakış. İzmir Katip Çelebi Üniversitesi Sağlık Bilimleri Fakültesi Dergisi, 4(2), 61-68.
Chaves, M. O., Ribeiro, G. P., Amorim, K. A. (2018). The role of the nurse in caring for the child with cancer: integration review. Hospital & Palliative Medicine International Journal, 2 (4), (s. 225-229).
Chou, K. R. (2000). Caregiver burden: a concept analysis. Journal of pediatric nursing, 15(6), 398-407.
DeKoven M, Karkare S, Lee WC, Kelley LA, Cooper DL, Pham H, Powers J, Wisniewski T. (2014). Impact of haemophilia with inhibitors on caregiver burden in the United States. Haemophilia, 20 (6): 822-30.
Demirtepe, D., Bozo, Ö. (2009). Bakıcı iyilik ölçeği’nin uyarlama güvenirlik ve geçerlik çalışması. Türk Psikoloji Yayınları, 12 (23), (s. 28-37).
Green D. (2006). The management of acquired haemophilia. Haemophilia. 12:32-36.
Gringeri A, von Mackensen S, Auerswald G, et al. (2004). Health status and health-related quality of life of children with haemophilia form six West European countries. Haemophilia, 10(Suppl 1): 26- 33.
İnceoğlu, Ş.(2019). Kanserli çocuğu olan annelerin bakım verme yükü ve yaşam kalitesi (Master's thesis, Lisansüstü Eğitim Enstitüsü).
İnci, F., Erdem, M. (2008). Bakım verme yükü ölçeği’nin Türkçe’ye uyarlanması geçerlilik ve güvenilirliği. Atatürk Üniversitesi Hemşirelik Yüksek Okulu Dergisi, 11 (4), (s. 85-95).
Kantarcıoğlu AÇ, Evim MS. (2018). Bursa’da pediatrik talasemi, hemofili ve lösemili olgu annelerinin aşırı koruyucu ebeveyn tutumları ve duygu durumlarının değerlendirilmesi. Güncel Pediatri, 16 (3): 37-50.
Kavaklı K. (2011). Hemofililer. İçinde: Anak SS, Aydoğan G, Çetin M, İrken G, Kemahlı S, Öztürk G, Yeşilipek MA editörler. Pediatrik Hematoloji, 1 nci baskı, İstanbul, İstanbul Tıp Kitabevi, 479-494.
Khair, K., & Chaplin, S. (2016). The impact on parents of having a child with haemophilia. The Journal of Haemophilia Practice, 3(2), 4-14.
Koch, K.D., Jones, B.L. (2018). Supporting parent caregivers of children with life-limiting illness. Children, 5, (s. 85).
Kodra Y, Cavazza M, Schieppati A, Santis MD, Armeni P, Arcieri R, Calizzani G, Fattore G, Manzoli L, Mantovani L, Taruscio D. (2014). The social burden and quality of life of patients with haemophilia in Italy. Blood Transfus, 12 (3): 567-75.
Lindvall K, Von Mackensen S, Elmstahl S, Khair K, Stain AM, Ljung R, Berntorp E. Increased burden on caregivers of having a child with haemophilia complicated by inhibitors. Pediatr Blood Cancer 2014, 61 (4): 706-11.
Liu, Z., Heffernan, C., & Tan, J. (2020). Caregiver burden: A concept analysis. International journal of nursing sciences, 7(4), 438-445.
Memik, N. Ç., Ağaoğlu, B., Coşkun, A., Üneri, Ö. Ş., & Karakaya, I. (2007). Çocuklar için yaşam kalitesi ölçeğinin 13-18 yaş ergen formunun geçerlik ve güvenilirliği. Türk Psikiyatri Dergisi, 18(4), 353-363.
Montgomery RR, Scott JP. (2008). Hemorajik ve trombotik hastalıklar. İçinde: Behrman RE, Kliegman RM, Jenson HB, eds. (Çeviri ed. Akçay T.) Nelson Pediatri, Cilt 3, Ünite 7, Bölüm 468. Nobel Tıp Kitabevleri,.
Myrin-Westesson L, Baghaei F, Friberg F. (2013). The experience of being a female carrier of haemophilia and the mother of a haemophilic child. Haemophilia, 19(2): 219- 224.
Nagelhout, E.S., Linder, L.A., Austin, T., Parsons, B.G., Scott, B., Gardner, E., Spraker- Perlman, H., Verma, A., Fluchel, M.N., Wu, Y.P. (2018). Social media use among parents and caregivers of children with cancer. Journal of Pediatric Oncology Nursing, 35 (6), (s. 339-405).
Rubira, EA., Marcon, S.R., Belasco, AG., Gaiva, M.A., Espinosa, MM. (2012). Burden and quality of life of caregivers of children and adolescents with chemotherapy treatment for cancer. Acta Pau Enferm, 25 (4), (s. 567-73).
Schulz, R., Sherwood, PR. (2008). Physical and mental health effects of family caregiving. American Journal of Nursing, 108(9), (s. 23-27).
Sevgi, T. (2021). Hemofilili çocuğa sahip ebeveynlerin bakım yükünün algılanan sosyal destek ve yaşam kalitelerine etkisinin incelenmesi(Yayınlanmamış doktora tezi). İnönü Üniversitesi Sağlık Bilimleri Enstitüsü, Malatya.
Şenol S, Seyfioğlu U, Kavaklı K.( 2008). Hemofili hastalarına bakım verenlerin umutsuzluk ve depresyon düzeylerinin incelenmesi. Ege Pediatri Bülteni, 15(3): s. 187- 196. 11.
Şenol S. (2006). Hemofili hastalarında kapsamlı bakım ve hemşirelik rolü. Türkiye Klinikleri J. Int. Med. Sci. 2(2).
Şenol S. (2016). Hemofili tanılı çocukta tedavinin uygulanması ve bakım ilkeleri. Turkiye Klinikleri J Pediatr Nurs-Special Topics, 2(2):8-14.
Şenol, S. (2018). Tarih boyunca pediatri hemşiresinin rol ve işlevleri. Türkiye Klinikleri J Pediatr Nurs-Special Topics, 4(1), (s. 1-7).
Sezer, T. A. (2019). Kronik hastalığa sahip çocuk-ergen ve ebeveynlerinin yaşam kalitesi algıları. Sürekli Tıp Eğitimi Dergisi, 28(2), 127-136.
Shaw D, Riley GA. (2008). The impact on parents of developments in the care of children with bleeding disorders. Haemophilia, 14: 65- 67.
Sullivan, M. T. (2004). Caregiver strain index. Dermatol Nurs, 16(4), (s. 385-386).
Toledano-Toledano, F., & Luna, D. (2020). The psychosocial profile of family caregivers of children with chronic diseases: A cross-sectional study. BioPsychoSocial medicine, 14(1), 1-9.
Varni, J., Burnwinkle, T. M., Katz, E. R., Kathy, M., ve Dickinson, P. (2002). The PedsQL in Pediatric Cancer. American Cancer Society.
von Mackensen, S., Myrin Westesson, L., Kavakli, K., Klukowska, A., Escuriola, C., Uitslager, N., ... & Khair, K. (2019). The impact of psychosocial determinants on caregivers’ burden of children with haemophilia (results of the BBC study). Haemophilia, 25(3), 424-432.
Wagner B., Krüger S., Hilberg T., Ay C., Hasenoehrl T., Huber D. F. X, Crevenna R. (2020). The effect of resistance exercise on strength and safety outcome for people with haemophilia: A systematic review. Haemophilia. 26(2):200-215.
Wallander JL, Schmitt M, Koot HM (2001) Quality of life measurement in children and adolescents: issues, instruments and applications. J Clin Psychol, 57:571-585.
Warner, B. E. L., Kirchhoff, A. C., Nam, G. E., Fluchel. M. (2014). Financial burden of pediatric cancer for patients and their families. Journal of Oncology Practice, 11(1), (s. 12-18).
Wharfe G, Buchner-Daley, L, Gibson T, Hilliard P, Usuba K, Abad A, BomaFischer L, Bouskill V, Floros G et al. (2018). The Jamaican haemophilia registry: Describing the burden of disease. Haemophilia, 24 (4): 179-86.
WhoQol Group. (1995). The World Health Organization quality of life assessment (WHOQOL): position paper from the World Health Organization. Social science & medicine, 41(10), 1403-1409.
Wisniewski T, Petrilla A, Holot N. et al. (2013). Health-related quality of life in haemophilia patients with inhibitors and their caregivers. Haemophilia, 19: 287– 293.
Yüzer S, Yiğit R, Taşdelen B. (2010).Çocuğu hastanede yatan annelerin aldığı sosyal destek ile depresyon düzeyleri arasındaki ilişki. Anadolu Hemşirelik ve Sağlık Bilimleri Dergisi, 9 (4): 54-62.
Zarit, S. H., Reever, K. E., Bach-Peterson, J. (1980). Relatives of the impaired elderly: Correlates of feelings of burden. Gerontologist, 20, (s. 649-655).
