Review
BibTex RIS Cite

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

Year 2023, Volume: 16 Issue: 2, 234 - 246, 15.04.2023
https://doi.org/10.46483/deuhfed.1057807

Abstract

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.

References

  • 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
  • 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.
  • 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
  • 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
  • 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
  • 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
  • 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
  • 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
  • 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
  • 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
  • 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.
  • 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
  • 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
  • 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
  • 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
  • Lösemili Çocuklar Vakfı. (2019). Lösemi Nedir? https://www.losev.org.tr/v6/sayfa/losemi-nedir-31
  • 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
  • National Cancer Society. (2015). Children with Cancer: A Guide for Parents. In National Cancer Institute.
  • 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
  • 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
  • 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
  • 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
  • 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
  • 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)
  • 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.
  • 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
  • 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
  • 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.
  • 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.
  • 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

Kanserli Çocuğa Bakım Veren Ebeveynlerin Yaşadıkları Bakım Yükü ve Zorluklar

Year 2023, Volume: 16 Issue: 2, 234 - 246, 15.04.2023
https://doi.org/10.46483/deuhfed.1057807

Abstract

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.

References

  • 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
  • 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.
  • 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
  • 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
  • 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
  • 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
  • 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
  • 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
  • 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
  • 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
  • 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.
  • 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
  • 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
  • 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
  • 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
  • Lösemili Çocuklar Vakfı. (2019). Lösemi Nedir? https://www.losev.org.tr/v6/sayfa/losemi-nedir-31
  • 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
  • National Cancer Society. (2015). Children with Cancer: A Guide for Parents. In National Cancer Institute.
  • 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
  • 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
  • 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
  • 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
  • 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
  • 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)
  • 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.
  • 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
  • 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
  • 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.
  • 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.
  • 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
There are 30 citations in total.

Details

Primary Language Turkish
Subjects Nursing
Journal Section Review
Authors

Recep Kara 0000-0001-5742-9842

Merve Gümüş 0000-0001-8648-594X

Zümrüt Başbakkal 0000-0002-7937-7518

Publication Date April 15, 2023
Published in Issue Year 2023 Volume: 16 Issue: 2

Cite

APA Kara, R., Gümüş, M., & Başbakkal, Z. (2023). Kanserli Çocuğa Bakım Veren Ebeveynlerin Yaşadıkları Bakım Yükü ve Zorluklar. Dokuz Eylül Üniversitesi Hemşirelik Fakültesi Elektronik Dergisi, 16(2), 234-246. https://doi.org/10.46483/deuhfed.1057807

E-Journal of Dokuz Eylul University Nursing Faculty was indexed by ULAKBİM Turkish Medical Index, Turk Medline, Turkiye Atıf Dizini, (since february 2021) EBSCO HOST, (since 26th of october 2021) DOAJ and (since 18th of January) Index Copernicus. 

349202.svg   images?q=tbn:ANd9GcTC_Z6flldw7Iux_67Kj0jpnG3JXgLIkuz_wGPQY8ASBMFcFxq0O32dYiYK6b1u-sbd6L8&usqp=CAU       wp-logo.png       ici2.png     Scopus_logo.svg



Creative Commons License
E-Journal of Dokuz Eylul University Nursing Faculty is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.