The Care Burden and Difficulties of Parents Caring for a Child with Cancer

Öz

Worldwide, one in 700 children up to the age of 14, or about 160,000 children, will be diagnosed with a new cancer. Complications caused by pediatric cancer treatments and the disease affect the quality of life of the child and his or her family. Parents of children with cancer have many tasks to perform, such as monitoring the child’s symptoms, controlling and ensuring the child’s well-being, providing emotional support to the child, planning and managing care, and landscaping to ensure the child’s safety. For this reason, families struggle with physical, psychological, social, and eco nomic issues when caring for children with cancer. This review addresses the problems caregiving burdens of parents caring for children with cancer.

Anahtar Kelimeler

• Childhood cancer
• Parents
• Care burden

Kanserli Çocuğa Bakım Veren Ebeveynlerin Yaşadıkları Bakım Yükü ve Zorluklar

Öz

Dünyada 14 yaşına kadar her 700 çocuktan birine, yaklaşık 160.000 çocuğa, yeni kanser tanısı konulmaktadır. Pediatrik kanser tedavilerinin ve hastalığın neden olduğu komplikasyonlar çocuk ve ailesinin yaşam kalitesini olumsuz yönde etkilemektedir. Kanserli çocuğa sahip ebeveynlerin, çocuğun semptomlarını izlemek, çocuğun kontrolünü ve rahatını sağlamak, duygusal açıdan çocuğa destek olmak, bakımını planlamak, yönetmek ve çocuğun güvenliğini sağlamak için çevre düzenlemesi yapmak gibi birçok sorumluluğu bulunmaktadır. Bu nedenle kanserli çocuğun bakımında aileler fiziksel, psikolojik, sosyal ve ekonomik sorunlar yaşamaktadır. Bu derlemede kanserli çocuklara bakım veren ebeveynlerin yaşadıkları sorunlar ve bakım yükleri ele alınmıştır.

Anahtar Kelimeler

• Çocukluk çağı kanseri
• Ebeveynler
• Bakım yükü

Kaynakça

1. Adelman, R. D., Tmanova, L. L., Delgado, D., Dion, S., & Lachs, M. S. (2014). Caregiver burden: A clinical review. Journal of the American Medical Association, 311(10), 1052–1059. https://doi.org/10.1001/jama.2014.304
2. Altundağ, B., Karaçam, E., Aydoğan, Y., Okyay, Ö., Ak, B., & Alpteker, H. (2016). Lösemili Çocuklara Yönelik Uygulanan Psikososyal Desteğin Etkileri. Kastamonu Eğitim Dergisi, 24(5), 2549–2560.
3. Bashore, L., & Hobbie, W. (2021). Emerging and Ongoing Survivorship Challenges Among Childhood Cancer Survivors and Providing Risk-Based Focused Follow-Up Care. Seminars in Oncology Nursing, 37(3), 151163. https://doi.org/10.1016/j.soncn.2021.151163
4. Beesley, V. L., Price, M. A., & Webb, P. M. (2011). Loss of lifestyle: health behaviour and weight changes after becoming a caregiver of a family member diagnosed with ovarian cancer. Supportive Care in Cancer, 19(12), 1949–1956. https://doi.org/10.1007/s00520-010-1035-2
5. Chan, H.-K., & Ismail, S. (2014). Side Effects of Chemotherapy among Cancer Patients in a Malaysian General Hospital: Experiences, Perceptions and Informational Needs from Clinical Pharmacists. Asian Pacific Journal of Cancer Prevention, 15(13), 5305–5309. https://doi.org/10.7314/apjcp.2014.15.13.5305
6. Dockerty, J. D., Williams, S. M., McGee, R., & Skegg, D. C. G. (2000). Impact of childhood cancer on the mental health of parents. Medical and Pediatric Oncology, 35(5), 475–483. https://doi.org/10.1002/1096-911X(20001101)35:5<475::AID-MPO6>3.0.CO;2-U
7. Dussel, V., Bona, K., Heath, J. A., Hilden, J. M., Weeks, J. C., & Wolfe, J. (2011). Unmeasured costs of a child’s death: Perceived financial burden, work disruptions, and economic coping strategies used by American and Australian families who lost children to cancer. Journal of Clinical Oncology, 29(8), 1007–1013. https://doi.org/10.1200/JCO.2009.27.8960
8. Gardner, M. H., Mrug, S., Schwebel, D. C., Phipps, S., Whelan, K., & Madan-Swain, A. (2017). Demographic, medical, and psychosocial predictors of benefit finding among caregivers of childhood cancer survivors. Psycho-Oncology, 26(1), 125–132. https://doi.org/10.1002/pon.4014

9. Given, B. A., Given, C. W., & Sherwood, P. (2012). The Challenge of Quality Cancer Care For Family Caregivers. Seminars in Oncology Nursing, 28(4), 205–212. https://doi.org/10.1016/j.soncn.2012.09.002
10. Jebin, F. M., Islam, M. S., Jobayer, T. Bin, Hossain, K. J., & Mamun, M. A. Al. (2021). Assessment of Parental Hopelessness For A Child With Cancer. KYAMC Journal, 11(4), 184–188. https://doi.org/10.3329/kyamcj.v11i4.51994
11. Jiles, B. C., Ph, R., Wu, E., Pharm, D., Bernhardt, M. B., Pharm, D., Kamalay, S., & Pharm, D. (2018). Pediatric Cancer Treatment Development. In M. L. Buck & K. B. Manasco (Eds.), Pediatric Oncology (1st ed., pp. 7–25). American Collage of Clinical Pharmacy.
12. Karataş, H., Özgönül, A., & Açar, A. (2021). Transplantasyon Yapılan Çocukların Ebeveynlerinin Yaşam Kalitesi ve Bakım Yükü. Genel Sağlık Bilimleri Dergisi, 3(1), 41–50. https://doi.org/10.51123/jgehes.2021.16
13. Klassen, A., Raina, P., Reineking, S., Dix, D., Pritchard, S., & O’Donnell, M. (2007). Developing a literature base to understand the caregiving experience of parents of children with cancer: a systematic review of factors related to parental health and well-being. Supportive Care in Cancer, 15(7), 807–818. https://doi.org/10.1007/s00520-007-0243-x
14. Köse, S., Türköz Arar, A., & Yıldırım, G. (2019). The Relationship Between Care Burden and Anxiety Levels of Parents Who Have Child Who were Diagnosed With Cancer. Journal of Education and Research in Nursing, 16(4), 282–287. https://doi.org/10.5222/HEAD.2019.282
15. Liu, Q., Petrini, M. A., Luo, D., Yang, B. X., Yang, J., & Haase, J. E. (2021). Parents’ Experiences of Having a Young Child With Acute Lymphoblastic Leukemia in China. Journal of Pediatric Oncology Nursing, 38(2), 94–104. https://doi.org/10.1177/1043454220975463
16. Lösemili Çocuklar Vakfı. (2019). Lösemi Nedir? https://www.losev.org.tr/v6/sayfa/losemi-nedir-31
17. Moridi, G., Valiee, S., Fathi, M., Nikbakht-nasrabadi, A., & Khaledi, S. (2018). Parents ’ experience of pediatric cancer: A qualitative study. Choronic Diseases Journal, 6(4), 214–224. https://doi.org/10.22122/cdj.v6i4.358
18. National Cancer Society. (2015). Children with Cancer: A Guide for Parents. In National Cancer Institute.
19. Neugebauer, C., & Mastergeorge, A. M. (2021). The Family Stress Model in the Context of Pediatric Cancer: A Systematic Review. Journal of Child and Family Studies, 30(5), 1099–1122. https://doi.org/10.1007/s10826-021-01928-0
20. Penner, L. A., Guevarra, D. A., Harper, F. W. K., Taub, J., Phipps, S., Albrecht, T. L., & Kross, E. (2016). Self-Distancing Buffers High Trait Anxious Pediatric Cancer Caregivers Against Short- and Longer-Term Distress. Clinical Psychological Science, 4(4), 629–640. https://doi.org/10.1177/2167702615602864
21. Salvador, A., Crespo, C., Martins, A. R., Santos, S., & Canavarro, M. C. (2015). Parents ’ Perceptions About Their Child ’ s Illness in Pediatric Cancer: Links with Caregiving Burden and Quality of Life. Journal of Child and Family Studies, 24, 1129–1140. https://doi.org/10.1007/s10826-014-9921-8
22. Şentürk, S., Bıçak, D., & Akça, D. (2018). Kanserli Hasta Yakınlarının Yaşadıkları Sorunlar ve Hemşirelik Yaklaşımı. Sağlık Akademisyenleri Dergisi, 5(1), 35–40. https://doi.org/10.5455/sad.13-1517408238
23. Shoghi, M., Shahbazi, B., & Seyedfatemi, N. (2019). The Effect of the Family-Centered Empowerment Model (FCEM) on the Care Burden of the Parents of Children Diagnosed with cancer. Asian Pacific Journal of Cancer Prevention, 20(6), 1757–1764. https://doi.org/10.31557/APJCP.2019.20.6.1757
24. T.C. Sağlık Bakanlığı Türkiye Halk Sağlığı Kurumu. (2016). Türkiye Kanser İstatistikleri. https://hsgm.saglik.gov.tr/tr/kanser-istatistikleri/yillar/2016-yili-turkiye-kanser-i-statistikleri.html (Erişim Tarihi: 29.09.2020)
25. Taşçıoğlu, G., Beyazıt, U., & Ayhan, A. B. (2017). Hastanede Tedavi Gören Çocukların Ebeveynlerinde Bakım Verme Yükünün İncelenmesi. Adnan Menderes Üniversitesi Sağlık Bilimleri Fakültesi Dergisi, 1(1), 10–19.
26. Türe, E., Yazar, A., Akın, F., & Aydın, A. (2018). Kronik Hastalık Nedeni İle Takip Edilen Çocukların Bakım Verenlerinin Bakım Verme Yükünün Değerlendirilmesi. Bozok Tıp Dergisi, 8(3), 46–53. https://doi.org/10.16919/bozoktip.403880
27. Warner, E. L., Kirchhoff, A. C., Nam, G. E., & Fluchel, M. (2015). Financial Burden of Pediatric Cancer for Patients and Their Families. Journal of Oncology Practice, 11(1), 12–18. https://doi.org/10.1200/JOP.2014.001495
28. Warner, E. L., Park, E. R., Stroup, A., Kinney, A. Y., & Kirchhoff, A. C. (2013). Childhood Cancer Survivors’ Familiarity With and Opinions of the Patient Protection and Affordable Care Act. American Society of Clinical Oncology, 1–5.
29. Yıldırım, G., Göktaş, S. B., Köse, S., & Yıldız, T. (2014). Kemoterapi Tedavisi Gören Çocukların Annelerindeki Kaygı Düzeyleri. International Journal of Basic and Clinical Medicine, 2(2), 69–76.
30. Yıldız, E., Dedeli, Ö., & Çınar Pakyüz, S. (2016). Kanser Hastalarına Bakım Veren Aile Üyelerinin Bakım Yükü ve Yaşam Kalitesinin İncelenmesi. Hemşirelikte Eğitim ve Araştırma Dergisi, 13(3), 216–225. https://doi.org/10.5222/HEAD.2016.216