Ike Wuri Winahyu Sari, Sri Warsini, Christantie Effendy

DOI: https://doi.org/10.33546/bnj.479


Background: There have been various studies into the family caregivers’ experiences in taking care of advanced-cancer patients. But a study exploring the burden among family caregivers has not yet been conducted in Indonesia, a country which has strong family bonds among family members.

Objective: This present study aimed to identify the burden among family caregivers of advanced cancer patients.

Methods: This study was a cross-sectional study conducted from December 2016 to February 2017 on 178 consenting family caregivers and advanced cancer patients, selected using a purposive sampling technique. The Caregiver Reaction Assessment (CRA) was used to measure their burden. Data were analyzed using descriptive analyzes and bivariate analyzes.

Results: The burden among family caregivers was 2.38 ± 0.38 (mean range 1-5). The highest burden was in the disrupted schedule domain.

Conclusion: Our findings identified that the burden among family caregivers was at the medium level. The length of care per day and family support are potential targets for preventative intervention strategies to reduce the burden among the family caregivers.


burden; cancer; family caregivers; Indonesia; palliative care

Full Text:



ACS American Cancer Society. (2016). If treatment for cervical cancer stops working. Retrieved from https://www.cancer.org/cancer/cervical-cancer/after-treatment/no-longer-working.html

Anderson, F., Downing, G. M., Hill, J., Casorso, L., & Lerch, N. (1996). Palliative performance scale (PPS): a new tool. Journal of Palliative Care, 12(1), 5-11.

Braun, M., Mikulincer, M., Rydall, A., Walsh, A., & Rodin, G. (2007). Hidden morbidity in cancer: spouse caregivers. Journal of Clinical Oncology, 25(30), 4829-4834.

Burton, A. M., Sautter, J. M., Tulsky, J. A., Lindquist, J. H., Hays, J. C., Olsen, M. K., . . . Steinhauser, K. E. (2012). Burden and well-being among a diverse sample of cancer, congestive heart failure, and chronic obstructive pulmonary disease caregivers. Journal of Pain and Symptom Management, 44(3), 410-420.

Chou, K.-R. (2000). Caregiver burden: a concept analysis. Journal of Pediatric Nursing, 15(6), 398-407.

Effendy, C., Vernooij‐Dassen, M., Setiyarini, S., Kristanti, M. S., Tejawinata, S., Vissers, K., & Engels, Y. (2015). Family caregivers' involvement in caring for a hospitalized patient with cancer and their quality of life in a country with strong family bonds. Psycho‐Oncology, 24(5), 585-591.

Francis, L. E., Worthington, J., Kypriotakis, G., & Rose, J. H. (2010). Relationship quality and burden among caregivers for late-stage cancer patients. Supportive Care in Cancer, 18(11), 1429-1436.

Given, B. A., Given, C. W., & Kozachik, S. (2001). Family support in advanced cancer. CA: A Cancer Journal for Clinicians, 51(4), 213-231.

Given, C. W., Given, B., Stommel, M., Collins, C., King, S., & Franklin, S. (1992). The caregiver reaction assessment (CRA) for caregivers to persons with chronic physical and mental impairments. Research in Nursing and Health, 15(4), 271-283.

Goldstein, N. E., Concato, J., Fried, T. R., & Kasl, S. V. (2004). Factors associated with caregiver burden among caregivers of terminally ill patients with cancer. Journal of Palliative Care, 20(1), 38.

Govina, O., Kotronoulas, G., Mystakidou, K., Katsaragakis, S., Vlachou, E., & Patiraki, E. (2015). Effects of patient and personal demographic, clinical and psychosocial characteristics on the burden of family members caring for patients with advanced cancer in Greece. European Journal of Oncology Nursing, 19(1), 81-88.

Grov, E. K., Fosså, S. D., Tønnessen, A., & Dahl, A. A. (2006). The caregiver reaction assessment: psychometrics, and temporal stability in primary caregivers of Norwegian cancer patients in late palliative phase. Psycho‐Oncology, 15(6), 517-527.

Harding, R., Gao, W., Jackson, D., Pearson, C., Murray, J., & Higginson, I. J. (2015). Comparative analysis of informal caregiver burden in advanced cancer, dementia, and acquired brain injury. Journal of Pain and Symptom Management, 50(4), 445-452.

Higginson, I. J., & Gao, W. (2008). Caregiver assessment of patients with advanced cancer: concordance with patients, effect of burden and positivity. Health and Quality of Life Outcomes, 6(1), 42.

Lee, K.-C., Yiin, J.-J., & Chao, Y.-F. (2016). Effect of integrated caregiver support on caregiver burden for people taking care of people with cancer at the end of life: A cohort and quasi-experimental clinical trial. International Journal of Nursing Studies, 56, 17-26.

National Cancer Institute. (2016). NCI dictionary of cancer terms: National Cancer Institute.

Papastavrou, E., Charalambous, A., & Tsangari, H. (2009). Exploring the other side of cancer care: the informal caregiver. European Journal of Oncology Nursing, 13(2), 128-136.

Papastavrou, E., Charalambous, A., & Tsangari, H. (2012). How do informal caregivers of patients with cancer cope: A descriptive study of the coping strategies employed. European Journal of Oncology Nursing, 16(3), 258-263.

Rafiyah, I. (2011). burden on family caregivers caring for patients with schizophrenia and its related factors. Nurse Media Journal of Nursing, 1(1), 29-41.

Ratnawati, D., & Loebis, H. (2014). Relationship of burden with characteristic sociodemographic caregiver in schizophrenic patients. Journal of Biology, 21, 56-59.

Rha, S. Y., Park, Y., Song, S. K., Lee, C. E., & Lee, J. (2015). Caregiving burden and the quality of life of family caregivers of cancer patients: the relationship and correlates. European Journal of Oncology Nursing, 19(4), 376-382.

Riskesdas. (2013). Basic health research report. Jakarta: Ministry of Health of Indonesia

Smilkstein, G. (1978). The Family APGAR: A proposal for family function test and its use by physicians. The Journal of Family Practice. 6(6), 1231-1239.

Vahidi, M., Mahdavi, N., Asghari, E., Ebrahimi, H., Ziaei, J. E., Hosseinzadeh, M., . . . Kermani, I. A. (2016). Other side of breast cancer: Factors associated with caregiver burden. Asian nursing research, 10(3), 201-206.

Vernooij-Dassen, M. J., Osse, B. H., Schadé, E., & Grol, R. P. (2005). Patient autonomy problems in palliative care: systematic development and evaluation of a questionnaire. Journal of Pain and Symptom Management, 30(3), 264-270.

WHO. (2016). Cancer. Retrieved from http://www.who. int/en/news-room/fact-sheets/detail/cancer

Yoon, S.-J., Kim, J.-S., Jung, J.-G., Kim, S.-S., & Kim, S. (2014). Modifiable factors associated with caregiver burden among family caregivers of terminally ill Korean cancer patients. Supportive Care in Cancer, 22(5), 1243-1250.


  • There are currently no refbacks.

Copyright (c) 2018 Ike Wuri Winahyu Sari, Sri Warsini, Christantie Effendy

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