Hambatan yang Dialami Keluarga dalam Menjalankan Program Pelayananan Paliatif Pasien Kanker Stadium Lanjut
Abstract
This study aims to explore the obstacles experienced by families in providing palliative services to advanced cancer patients. The method used is a qualitative research design with a phenomenological approach. The research results showed that there were three themes found in the family's perception of undergoing a palliative care program for advanced cancer patients, namely that the patient should not be accompanied during examinations, the patient's companion cared for him while working, and was financially burdened. In conclusion, the obstacles experienced by families in undergoing palliative care for advanced cancer patients are caused by the family's low socioeconomic status, so even though the government provides free treatment and care, transportation to home is your responsibility. Apart from that, when the patient was undergoing treatment at the hospital, he was in COVID-19.
Keywords: Family Barriers, Palliative Services, Cancer.
References
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Arya, A., Buchman, S., Gagnon, B., & Downar, J. (2020). Pandemic Palliative Care: Beyond Ventilators and Saving Lives. Cmaj, 192(15), E400–E404. https://doi.org/10.1503/cmaj.200465
Barlund, A. S., André, B., Sand, K., & Brenne, A. T. (2021). A Qualitative Study of Bereaved Family Caregivers: Feeling of Security, Facilitators and Barriers for Rural Home Care and Death for Persons with Advanced Cancer. BMC Palliative Care, 20(1), 7. https://doi.org/10.1186/s12904-020-00705-y
Chua, G. P., Pang, G. S. Y., Yee, A. C. P., Neo, P. S. H., Zhou, S., Lim, C., Wong, Y. Y., Qu, D. L., Pan, F. T., & Yang, G. M. (2020). Supporting the Patients with Advanced Cancer and Their Family Caregivers: What are Their palliative Care Needs? BMC Cancer, 20(1), 1–15. https://doi.org/10.1186/s12885-020-07239-9
Dehbozorgi, R., Fereidooni-Moghadam, M., Shahriari, M., & Moghimi-Sarani, E. (2022). Barriers to Family Involvement in the Care of Patients with Chronic Mental Illnesses: A Qualitative Study. Frontiers in Psychiatry, 13. https://doi.org/10.3389/fpsyt.2022.995863
Effendy, C., Uligraff, D. K., Sari, S. H., Angraini, F., & Chandra, L. (2022). Experiences of Family Caregivers of Children with Cancer While Receiving Home-Based Pediatric Palliative Care in Indonesia: A Qualitative study. BMC Palliative Care, 21(1), 1–10. https://doi.org/10.1186/s12904-022-00986-5
Glajchen, M., Goehring, A., Johns, H., & Portenoy, R. K. (2022). Family Meetings in Palliative Care: Benefits and Barriers. Current Treatment Options in Oncology, 23(5), 658–667. https://doi.org/10.1007/s11864-022-00957-1
Hassankhani, H., Rahmani, A., Best, A., Taleghani, F., Sanaat, Z., & Dehghannezhad, J. (2020). Barriers to Home-Based Palliative Care in People with Cancer: A Qualitative Study of the Perspective of Caregivers. Nursing Open, 7(4), 1260–1268. https://doi.org/10.1002/nop2.503
Jaji, J. (2019). Pengalaman Keluarga Merawat Anggota Keluarga dengan Palliative Care (Studi Fenomenologi). Jurnal Keperawatan Sriwijaya, 6(2), 18–25. https://ejournal.unsri.ac.id/index.php/jk_sriwijaya/article/view/9663
Keramatikerman, M. (2020). A Systematic Review on Challenges Faced by Family Caregivers of Cancer Patients. Open Access Journal of Biomedical Science, 2(4), 421–424. https://doi.org/10.38125/oajbs.000191
Knobloch, C. S., Nauck, F., Ostgathe, C., Grüne, B., & Bausewein, C. (2021). Adaptation of the Australian Palliative Care Phase Concept to the German Palliative Care Context : A Mixed ‑ Methods Approach Using Cognitive Interviews and Cross ‑ Sectional Data. BMC Palliative Care, 1–11. https://doi.org/10.1186/s12904-021-00825-z
Koerner, J., Johnston, N., Samara, J., Liu, W. M., Chapman, M., & Forbat, L. (2021). Context and Mechanisms That Enable Implementation of Specialist Palliative Care Needs Rounds in Care Homes: Results from a Qualitative Interview Study. BMC Palliative Care, 20(1), 1–11. https://doi.org/10.1186/s12904-021-00812-4
Mallon, A., Hasson, F., Casson, K., Slater, P., & McIlfatrick, S. (2021). Young Adults Understanding and Readiness to Engage with Palliative Care: Extending the Reach of Palliative Care Through a Public Health Approach: A Qualitative Study. BMC Palliative Care, 20(1), 1–13. https://doi.org/10.1186/s12904-021-00808-0
Mayland, C. R., Doughty, H. C., Rogers, S. N., Gola, A., Mason, S., Hubbert, C., Macareavy, D., & Jack, B. A. (2021). A Qualitative Study Exploring Patient, Family Carer and Healthcare Professionals’ Direct Experiences and Barriers to Providing and Integrating Palliative Care for Advanced Head and Neck Cancer. Journal of Palliative Care, 36(2), 121–129. https://doi.org/10.1177/0825859720957817
Owoo, B., Ninnoni, J. P., Ampofo, E. A., & Seidu, A. A. (2022). Challenges Encountered by Family Caregivers of Prostate Cancer Patients in Cape Coast, Ghana: A Descriptive Phenomenological Study. BMC Palliative Care, 21(1), 1–11. https://doi.org/10.1186/s12904-022-00993-6
Pai, R., Nayak, M., & Sangeetha, N. (2020). Palliative Care Challenges and Strategies for the Management Amid COVID-19 Pandemic in India: Perspectives of Palliative Care Nurses, Cancer Patients, and Caregivers. Indian Journal of Palliative Care, 26(5), S121–S125. https://doi.org/10.4103/IJPC.IJPC_182_20
Reblin, M., Ketcher, D., & Vadaparampil, S. T. (2022). Care for the Cancer Caregiver: A Qualitative Study of Facilitators and Barriers to Caregiver Integration and Support. Journal of Cancer Education, 37(6), 1634–1640. https://doi.org/10.1007/s13187-021-02001-6
Schoenmaekers, J. J. A. O., Hendriks, L. E. L., & van den Beuken-van Everdingen, M. H. J. (2020). Palliative Care for Cancer Patients During the COVID-19 Pandemic, with Special Focus on Lung Cancer. Frontiers in Oncology, 10(July), 1–5. https://doi.org/10.3389/fonc.2020.01405
Yılmaz, N. G., Sungur, H., van Weert, J. C. M., van den Muijsenbergh, M. E. T. C., & Schouten, B. C. (2022). Enhancing Patient Participation of Older Migrant Cancer Patients: Needs, Barriers, and eHealth. Ethnicity and Health, 27(5), 1123–1146. https://doi.org/10.1080/13557858.2020.1857338
Yoon, S. J. (2020). Barriers to Early Palliative Care. The Korean Journal of Hospice and Palliative Care, 23(4), 252–255. https://doi.org/10.14475/kjhpc.2020.23.4.252
Arya, A., Buchman, S., Gagnon, B., & Downar, J. (2020). Pandemic Palliative Care: Beyond Ventilators and Saving Lives. Cmaj, 192(15), E400–E404. https://doi.org/10.1503/cmaj.200465
Barlund, A. S., André, B., Sand, K., & Brenne, A. T. (2021). A Qualitative Study of Bereaved Family Caregivers: Feeling of Security, Facilitators and Barriers for Rural Home Care and Death for Persons with Advanced Cancer. BMC Palliative Care, 20(1), 7. https://doi.org/10.1186/s12904-020-00705-y
Chua, G. P., Pang, G. S. Y., Yee, A. C. P., Neo, P. S. H., Zhou, S., Lim, C., Wong, Y. Y., Qu, D. L., Pan, F. T., & Yang, G. M. (2020). Supporting the Patients with Advanced Cancer and Their Family Caregivers: What are Their palliative Care Needs? BMC Cancer, 20(1), 1–15. https://doi.org/10.1186/s12885-020-07239-9
Dehbozorgi, R., Fereidooni-Moghadam, M., Shahriari, M., & Moghimi-Sarani, E. (2022). Barriers to Family Involvement in the Care of Patients with Chronic Mental Illnesses: A Qualitative Study. Frontiers in Psychiatry, 13. https://doi.org/10.3389/fpsyt.2022.995863
Effendy, C., Uligraff, D. K., Sari, S. H., Angraini, F., & Chandra, L. (2022). Experiences of Family Caregivers of Children with Cancer While Receiving Home-Based Pediatric Palliative Care in Indonesia: A Qualitative study. BMC Palliative Care, 21(1), 1–10. https://doi.org/10.1186/s12904-022-00986-5
Glajchen, M., Goehring, A., Johns, H., & Portenoy, R. K. (2022). Family Meetings in Palliative Care: Benefits and Barriers. Current Treatment Options in Oncology, 23(5), 658–667. https://doi.org/10.1007/s11864-022-00957-1
Hassankhani, H., Rahmani, A., Best, A., Taleghani, F., Sanaat, Z., & Dehghannezhad, J. (2020). Barriers to Home-Based Palliative Care in People with Cancer: A Qualitative Study of the Perspective of Caregivers. Nursing Open, 7(4), 1260–1268. https://doi.org/10.1002/nop2.503
Jaji, J. (2019). Pengalaman Keluarga Merawat Anggota Keluarga dengan Palliative Care (Studi Fenomenologi). Jurnal Keperawatan Sriwijaya, 6(2), 18–25. https://ejournal.unsri.ac.id/index.php/jk_sriwijaya/article/view/9663
Keramatikerman, M. (2020). A Systematic Review on Challenges Faced by Family Caregivers of Cancer Patients. Open Access Journal of Biomedical Science, 2(4), 421–424. https://doi.org/10.38125/oajbs.000191
Knobloch, C. S., Nauck, F., Ostgathe, C., Grüne, B., & Bausewein, C. (2021). Adaptation of the Australian Palliative Care Phase Concept to the German Palliative Care Context : A Mixed ‑ Methods Approach Using Cognitive Interviews and Cross ‑ Sectional Data. BMC Palliative Care, 1–11. https://doi.org/10.1186/s12904-021-00825-z
Koerner, J., Johnston, N., Samara, J., Liu, W. M., Chapman, M., & Forbat, L. (2021). Context and Mechanisms That Enable Implementation of Specialist Palliative Care Needs Rounds in Care Homes: Results from a Qualitative Interview Study. BMC Palliative Care, 20(1), 1–11. https://doi.org/10.1186/s12904-021-00812-4
Mallon, A., Hasson, F., Casson, K., Slater, P., & McIlfatrick, S. (2021). Young Adults Understanding and Readiness to Engage with Palliative Care: Extending the Reach of Palliative Care Through a Public Health Approach: A Qualitative Study. BMC Palliative Care, 20(1), 1–13. https://doi.org/10.1186/s12904-021-00808-0
Mayland, C. R., Doughty, H. C., Rogers, S. N., Gola, A., Mason, S., Hubbert, C., Macareavy, D., & Jack, B. A. (2021). A Qualitative Study Exploring Patient, Family Carer and Healthcare Professionals’ Direct Experiences and Barriers to Providing and Integrating Palliative Care for Advanced Head and Neck Cancer. Journal of Palliative Care, 36(2), 121–129. https://doi.org/10.1177/0825859720957817
Owoo, B., Ninnoni, J. P., Ampofo, E. A., & Seidu, A. A. (2022). Challenges Encountered by Family Caregivers of Prostate Cancer Patients in Cape Coast, Ghana: A Descriptive Phenomenological Study. BMC Palliative Care, 21(1), 1–11. https://doi.org/10.1186/s12904-022-00993-6
Pai, R., Nayak, M., & Sangeetha, N. (2020). Palliative Care Challenges and Strategies for the Management Amid COVID-19 Pandemic in India: Perspectives of Palliative Care Nurses, Cancer Patients, and Caregivers. Indian Journal of Palliative Care, 26(5), S121–S125. https://doi.org/10.4103/IJPC.IJPC_182_20
Reblin, M., Ketcher, D., & Vadaparampil, S. T. (2022). Care for the Cancer Caregiver: A Qualitative Study of Facilitators and Barriers to Caregiver Integration and Support. Journal of Cancer Education, 37(6), 1634–1640. https://doi.org/10.1007/s13187-021-02001-6
Schoenmaekers, J. J. A. O., Hendriks, L. E. L., & van den Beuken-van Everdingen, M. H. J. (2020). Palliative Care for Cancer Patients During the COVID-19 Pandemic, with Special Focus on Lung Cancer. Frontiers in Oncology, 10(July), 1–5. https://doi.org/10.3389/fonc.2020.01405
Yılmaz, N. G., Sungur, H., van Weert, J. C. M., van den Muijsenbergh, M. E. T. C., & Schouten, B. C. (2022). Enhancing Patient Participation of Older Migrant Cancer Patients: Needs, Barriers, and eHealth. Ethnicity and Health, 27(5), 1123–1146. https://doi.org/10.1080/13557858.2020.1857338
Yoon, S. J. (2020). Barriers to Early Palliative Care. The Korean Journal of Hospice and Palliative Care, 23(4), 252–255. https://doi.org/10.14475/kjhpc.2020.23.4.252
