QUALITY OF LIFE OF FAMILY CAREGIVERS OF CHILDREN WITH LEUKEMIA: A DESCRIPTIVE QUANTITATIVE STUDY
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Keywords

caregivers
quality of life
parents
leukemia
child
Indonesia

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Nurhidayah, I., Hendrawati, S., & Hasriyadhi, D. P. (2020). QUALITY OF LIFE OF FAMILY CAREGIVERS OF CHILDREN WITH LEUKEMIA: A DESCRIPTIVE QUANTITATIVE STUDY. Belitung Nursing Journal, 6(2), 52–58. https://doi.org/10.33546/bnj.1041
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Accepted for publication: 2020-02-29
Peer reviewed: Yes

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Abstract

Background: Treatment of children with cancer can affect daily lives of family caregivers. This can disrupt roles in social life, limit daily activities, disrupt health and physical and emotional balance as well as causing economic problems and creating poor quality of life.

Objective: To describe the quality of life of family caregivers of children with leukemia based on characteristics of parents and children.

Methods: This was a descriptive quantitative study. The population was all parents as the primary caregivers who had children aged 0-15 years diagnosed with leukemia in pediatric wards of Provincial General Hospital of Dr. Hasan Sadikin Bandung, Indonesia. Thirty-four respondents participated in this study selected using a total sampling. The quality of life of family caregivers was measured using the quality of life family version standard questionnaire, and the children's severity of leukemia was identified by the severity of illness scale standard questionnaire. Data were analyzed using frequency distribution, mean, and standard deviation.

Results: The study results showed that family caregivers had poor quality of life (58.8%), with the worst sub-dimension including physical and psychological health conditions (55.9%), followed by social conditions (52.9%), and spiritual health conditions (50.0%). The majority of family caregivers who had the poorer quality of life were at the older age, male, having a primary education level, caring for their children for less than 12 months with severe leukemia, and having an average monthly income of fewer than 1.5 million rupiahs.

Conclusion: Poor quality of life was identified among family caregivers of children with leukemia. Therefore, it is suggested for nurses to provide nursing care holistically not only for the children but also the families to increase their quality of life.

https://doi.org/10.33546/bnj.1041
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Copyright (c) 2020 Ikeu Nurhidayah, Sri Hendrawati, Dewi Pratiwi Hasriyadhi

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This work is licensed under a Creative Commons Attribution 4.0 International License.

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References

Alvin Rich, II (2012). Gender and spirituality: Are women really more spiritual? (Senior thesis), Liberty University, Virginia.

Duci, Veronika, & Tahsini, Izela. (2012). Perceived social support and coping styles as moderators for levels of anxiety, depression and quality of life in cancer caregivers: A literature review. European Scientific Journal, 8(11).

Dumont, Serge, Turgeon, Jean, Allard, Pierre, Gagnon, Pierre, Charbonneau, Cecile, & Vezina, Lucie. (2006). Caring for a loved one with advanced cancer: determinants of psychological distress in family caregivers. Journal of Palliative Medicine, 9(4), 912-921. https://doi.org/10.1089/jpm.2006.9.912

Durik, Amanda M., Hyde, Janet Shibley, Marks, Amanda C., Roy, Amanda L., Anaya, Debra, & Schultz, Gretchen. (2006). Ethnicity and gender stereotypes of emotion. Sex Roles, 54(7-8), 429-445. https://doi.org/10.1007/s11199-006-9020-4

Ferrell, B.R., & Grant, M. . (2005). Quality of life family version (QOLFV). California: Natıonal Medıcal Center And Beckman Research Instıtute.

Gamayanti, Priliana, Rakhmawati, Windy, Mardhiyah, A. I., & Yuyun, Siti. (2012). Gambaran Kualitas Hidup Keluarga Dalam Merawat Anak Dengan Leukemia yang Menjalani Kemoterapi di RSUP Dr. Hasan Sadikin, Bandung [Overview of quality of family life in caring for children with leukemia undergoing chemotherapy at RSUP Dr. Hasan Sadikin, Bandung]. Indonesian Journal of Cancer, 6(1). https://doi.org/10.33371/ijoc.v6i1.148

Hacialioglu, Nazlı, Özer, Nadiye, Erdem, Neşe, & Erci, Behice. (2010). The quality of life of family caregivers of cancer patients in the east of Turkey. European Journal of Oncology Nursing, 14(3), 211-217.

Hagedoorn, Mariët, Sanderman, Robbert, Bolks, Hilde N., Tuinstra, Jolanda, & Coyne, James C. (2008). Distress in couples coping with cancer: a meta-analysis and critical review of role and gender effects. Psychological Bulletin, 134(1), 1. https://doi.org/10.1037/0033-2909.134.1.1

Hedström, Mariann, Ljungman, Gustaf, & von Essen, Louise. (2005). Perceptions of distress among adolescents recently diagnosed with cancer. Journal of Pediatric Hematology/Oncology, 27(1), 15-22. https://doi.org/10.1097/01.mph.0000151803.72219.ec

Khoury, May Naifeh, Huijer, Huda Abu-Saad, & Doumit, Myrna Abi Abdallah. (2013). Lebanese parents’ experiences with a child with cancer. European Journal of Oncology Nursing, 17(1), 16-21. https://doi.org/10.1016/j.ejon.2012.02.005

Kim, Youngmee, & Given, Barbara A. (2008). Quality of life of family caregivers of cancer survivors: across the trajectory of the illness. Cancer, 112(S11), 2556-2568. https://doi.org/10.1002/cncr.23449

Kim, Youngmee, & Spillers, Rachel L. (2010). Quality of life of family caregivers at 2 years after a relative's cancer diagnosis. Psycho‐oncology, 19(4), 431-440. https://doi.org/10.1002/pon.1576

Klassen, Anne F., Raina, Parminder, McIntosh, Cameron, Sung, Lillian, Klaassen, Robert J., O'Donnell, Maureen, . . . Dix, David. (2011). Parents of children with cancer: Which factors explain differences in health‐related quality of life. International Journal of Cancer, 129(5), 1190-1198. https://doi.org/10.1002/ijc.25737

Kong, Eun Hi. (2007). The influence of culture on the experiences of Korean, Korean American, and Caucasian-American family caregivers of frail older adults: a literature review. Journal of Korean Academy of Nursing, 37(2), 213-220. https://doi.org/10.4040/jkan.2007.37.2.213

Kudubes, Asli Akdeniz, Bektas, Murat, & Ugur, Ozlem. (2014). Symptom frequency of children with cancer and parent quality of life in Turkey. Asian Pacific Journal of Cancer Prevention, 15(8), 3487-3493. https://doi.org/10.7314/apjcp.2014.15.8.3487

Lau, Samantha, Lu, Xiaomin, Balsamo, Lyn, Devidas, Meenakshi, Winick, Naomi, Hunger, Stephen P., . . . Kadan‐Lottick, Nina. (2014). Family life events in the first year of acute lymphoblastic leukemia therapy: a children's oncology group report. Pediatric Blood & Cancer, 61(12), 2277-2284. https://doi.org/10.1002/pbc.25195

Leow, Mabel Q. H., Chan, Moon-Fai, & Chan, Sally W. C. (2014). Predictors of change in quality of life of family caregivers of patients near the end of life with advanced cancer. Cancer Nursing, 37(5), 391-400. https://doi.org/10.1097/ncc.0000000000000101

Lim, Haikel A., Tan, Joyce Y. S., Chua, Joanne, Yoong, Russell K. L., Lim, Siew Eng, Kua, Ee Heok, & Mahendran, Rathi. (2017). Quality of life of family caregivers of cancer patients in Singapore and globally. Singapore Medical Journal, 58(5), 258-261. https://doi.org/10.11622/ smedj.2016083

Litzelman, Kristin, Catrine, Kris, Gangnon, Ronald, & Witt, Whitney P. (2011). Quality of life among parents of children with cancer or brain tumors: the impact of child characteristics and parental psychosocial factors. Quality of Life Research, 20(8), 1261-1269. https://doi.org/10.1007/s11136-011-9854-2

Mancini, J., Baumstarck‐Barrau, K., Simeoni, M‐C, Grob, J‐J, Michel, G., Tarpin, C., . . . Auquier, P. (2011). Quality of life in a heterogeneous sample of caregivers of cancer patients: an in‐depth interview study. European Journal of Cancer Care, 20(4), 483-492. https://doi.org/10.1111/j.1365-2354.2010.01227.x

Ministry of Health of the Republic of Indonesia. (2015). Situasi penyakit kanker [Cancer situation]. Jakarta: Ministry of Health of the Republic of Indonesia.

National Cancer Institute. (2009). A snapshot of pediatric cancer. Retrieved from http://www.cancer.gov/aboutnci/servingpeople/cancer-snapshot

Nursyamsyiah. (2018). Analisis faktor yang berhubungan dengan normalisasi pada orang tua yang memiliki anak usia 3-18 tahun dengan leukemia di Bandung [Analysis of factors associated with normalization in parents who have children aged 3-18 years with leukemia in Bandung]. (Thesis), Fakultas Keperawatan Universitas Padjadjaran, Indonesia.

Pai, Ahna L. H., Greenley, Rachel Neff, Lewandowski, Amy, Drotar, Dennis, Youngstrom, Eric, & Peterson, Catherine Cant. (2007). A meta-analytic review of the influence of pediatric cancer on parent and family functioning. Journal of Family Psychology, 21(3), 407. https://doi.org/10.1037/0893-3200.21.3.407

Pangkahila, Wimpie. (2007). Anti-aging medicine: Memperlambat penuaan meningkatkan kualitas hidup [Anti-aging medicine: Slowing aging increases the quality of life]. Jakarta: Kompas Media Nusantara.

Pathirana, Thanya I., Goonawardena, C. S. E., & Wijesiriwardane, I. (2015). Quality of life of caregivers and impact on the nuclear family of children with leukaemia in the National Cancer Institute of Sri Lanka. Journal of the Postgraduate Institute of Medicine, 2(E18), 1-5. https://doi.org/10.4038/jpgim.7863

Provincial General Hospital of Dr. Hasan Sadikin Bandung. (2017). The database of Provincial General Hospital of Dr. Hasan Sadikin Bandung in 2016. Bandung Indonesia: Provincial General Hospital of Dr. Hasan Sadikin Bandung.

Rohmah, Anis Ika Nur, & Bariyah, Khoridatul. (2015). Kualitas hidup lanjut usia [Quality of life of elderly]. Jurnal Keperawatan, 3(2), 120–132.

Santo, Elizete Aparecida Rubira do Espírito, Gaíva, Maria Aparecida Munhoz, Espinosa, Mariano Martinez, Barbosa, Dulce Aparecida, & Belasco, Angélica Gonçalves Silva. (2011). Taking care of children with cancer: evaluation of the caregivers' burden and quality of life. Revista Latino-Americana de Enfermagem, 19(3), 515-522. https://doi.org/10.1590/s0104-11692011000300010

Santrock, J.W. . (2013). Life-span development (14th ed.). New York: McGraw-Hill Companies.

Saputra, H.A. . (2017). WHO: Kasus kanker pada anak di seluruh dunia meningkat 13 persen [WHO: Cases of cancer in children globally increased 13%]. Retrieved from https://lifestyle.okezone.com

Song, Youngshin, Nam, Soohyun, Park, Seyeon, Shin, In-soo, & Ku, Bon Jeong. (2017). The impact of social support on self-care of patients with diabetes: What is the effect of diabetes type? Systematic review and meta-analysis. The Diabetes Educator, 43(4), 396-412. https://doi.org/10.1177/0145721717712457

Stark, Rodney. (2002). Physiology and faith: Addressing the “universal” gender difference in religious commitment. Journal for the Scientific Study of Religion, 41(3), 495-507. https://doi.org/10.1111/1468-5906.00133

Stenberg, Una, Ruland, Cornelia M., & Miaskowski, Christine. (2010). Review of the literature on the effects of caring for a patient with cancer. Psycho‐oncology, 19(10), 1013-1025. https://doi.org/10.1002/pon.1670

The Indonesian Pediatrician Association. (2017). Mengenal leukemia pada anak [Introducing leukemia in children]. Retrieved from www.idai.or.id/artikel/seputar-kesehatan-anak/mengenal-leukemia-pada-anak

Tsai, Ming-Horng, Hsu, Jen-Fu, Chou, Wen-Jiun, Yang, Chao-Ping, Jaing, Tang-Her, Hung, Iou-Jih, . . . Huang, Yu-Shu. (2013). Psychosocial and emotional adjustment for children with pediatric cancer and their primary caregivers and the impact on their health-related quality of life during the first 6 months. Quality of Life Research, 22(3), 625-634. https://doi.org/10.1007/s11136-012-0176-9

Turkoglu, Nihan, & Kilic, Dilek. (2012). Effects of care burdens of caregivers of cancer patients on their quality of life. Asian Pacific Journal of Cancer Prevention, 13(8), 4141-4145. https://doi.org/10.7314/apjcp.2012.13.8.4141

Van den Tweel, Xandra W., Hatzmann, Janneke, Ensink, Elske, van der Lee, Johanna H., Peters, Marjolein, Fijnvandraat, Karin, & Grootenhuis, Martha. (2008). Quality of life of female caregivers of children with sickle cell disease: a survey. Haematologica, 93(4), 588-593. https://doi.org/10.3324/haematol.11610

Wadhwa, Deepa, Burman, Debika, Swami, Nadia, Rodin, Gary, Lo, Christopher, & Zimmermann, Camilla. (2013). Quality of life and mental health in caregivers of outpatients with advanced cancer. Psycho‐oncology, 22(2), 403-410. https://doi.org/10.1002/pon.2104

Weaver, Andrew J., & Flannelly, Kevin J. (2004). The role of religion/spirituality for cancer patients and their caregivers. Southern Medical Journal, 97(12), 1210-1214. https://doi.org/10.1097/01.smj. 0000146492.27650.1c

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.

Widodo, R.I., & Amanda, G. . (2018). Pentingnya deteksi dini kanker pada anak [The importance of early detection of cancer in children]. Retrieved from https://www.republika.co.id/berita/gaya-hidup/info-sehat/18/02/15/p45irq423-pentingnya-deteksi-dini-kanker-pada-anak

Yayasan Onkologi Anak Indonesia. (2017). Kanker pada anak [Cancer in children]. Retrieved from https://www.republika.co.id/berita/gaya-hidup/info-sehat/18/02/15/p45irq423-pentingnya-deteksi-dini-kanker-pada-anak

Young-Saleme, Tammi K., & Prevatt, Frances F. (2001). Brief report: Psychometric evaluation of the severity of illness scale in a pediatric oncology sample. Journal of Pediatric Psychology, 26(1), 55-60. https://doi.org/10.1093/jpepsy/26.1.55


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