Self-Transformation of Lay Workers through Field-Based Learning Experiences on Cancer Palliative Care
Abstract
Palliative care is essential in improving quality of life for cancer patients, especially in community settings where access to specialist care is limited. In Indonesia, lay workers play a vital role in bridging formal health services and patients requiring psychosocial and emotional support. This study explores the self-transformation experiences of palliative care lay workers following an advanced palliative cancer training program in Jakarta. Using a qualitative approach with interpretative phenomenological analysis, the study involved 14 participants selected through purposive sampling. Data were collected via in-depth interviews and analysed thematically. Findings reveal four main themes: (1) increased confidence and competence after training, (2) challenges in implementing palliative care in the community, (3) the importance of social and institutional support, and (4) recommendations for improving future training. The study concludes that experiential, context-based training enhances lay workers’ ability to provide holistic care, though systemic support and mentorship are crucial for sustainable impact. This research contributes to the growing evidence on community lay workers in palliative care and offers insights for designing programs that empower lay workers as reliable care agents in community-based cancer management.
References
Adhisty, K., Maulida, M. N., & Aprilia, Z. (2024). Pemberdayaan Masyarakat dalam Kaderisasi Program Relawan Paliatif Bidang Biopsikososial Spiritual. Jurnal Peduli Masyarakat, 6 (4), 1887–1892. http://jurnal.globalhealthsciencegroup.com/index.php/JPM
Bandieri, E., Borelli, E., Gilioli, F., Bigi, S., Mucciarini, C., Ferrari, U., Eliardo, S., Pinto, L., Porro, C. A., Efficace, F., Luppi, M., & Potenza, L. (2023). Stigma of Palliative Care among Patients with Advanced Cancer and Their Caregivers on Early Palliative Care. Cancers, 15 (14), 1. https://doi.org/10.3390/cancers15143656
Campbell, S., Greenwood, M., Prior, S., Shearer, T., Walkem, K., Young, S., Bywaters, D., & Walker, K. (2020). Purposive sampling: complex or simple? Research case examples. Journal of Research in Nursing, 25 (8), 652–661. https://doi.org/10.1177/1744987120927206
Czerwik-Kulpa, M., & Chylińska, J. (2010). Quality of life in palliative care. Acta Neuropsychologica, 8 (3), 244–262. https://doi.org/10.1080/23809000.2017.1400911
Dahniar, D., Ibrahim, J., & Rahmawati, R. (2023). Pelatuhan Kader Community-Based Palliative Care. JMM (Jurnal Masyarakat Mandiri), 7 (3), 2183–2193. https://doi.org/10.31764/jmm.v7i3.14117
Dasat, M., Mulyono, S., Khasanah, U., & Hermawan, S. M. (2024). Support Obtained by Families in Running Palliative Care Programs for Advanced Cancer Patients at Home. Indonesian Journal of Global Health Research, 6 (4), 1891–1902. https://doi.org/10.37287/ijghr.v6i4.3394
Gadsden, T., Mabunda, S. A., Palagyi, A., Maharani, A., Sujarwoto, S., Baddeley, M., & Jan, S. (2021). Performance-based incentives and community health workers’ outputs, a systematic review. Bulletin of the World Health Organization, 99 (11), 805–818. https://doi.org/10.2471/BLT.20.285218
Gondhowiardjo, S., Nurhidayat, W., Zhafirah, N. F., Jayalie, V. F., Sekarutami, S. M., Koesmedi Priharto, R., & Widyastuti, W. (2023). Cancer Profile in Jakarta: A 5-year Descrpiptive Study. Access Macedonian Journal of Medical Sciences, 11 (E), 17–22. https://doi.org/10.3889/oamjms.2022.8200
Handayani, A., Yuliani, E., & Anggraeni, S. (2023). Efektivitas Pelatihan Kader Terhadap Pengetahuan dan Keterampilan Deteksi Dini Kehamilan Resiko Tinggi. PREPOTIF Jurnal Kesehatan Masyarakat, 7 (3), 16545–16553.
Haris, Pabanne, F. U., & Syamsiah. (2022). Pelatihan Kader Kesehatan dan Aplikasi Edukasi Faktor Risiko Penyakit Tidak Menular. Media Karya Kesehatan, 5 (2), 137–150.
Hermawan, S. M., Anggraini, D., Zendrato, M. L. V., & Ernawati. (2025). Penguatan Kader PKK dalam Pelayanan Pasien Kanker Melalui Pelatihan Paliatif Dasar. Jurnal Peduli Masyarakat, 7 (1), 87–98. http://jurnal.globalhealthsciencegroup.com/index.php/JPM
Hermawan, S. M., & Wihardja, H. (2024). Barriers to Palliative Kader in Assisting Cancer Patients and Families at Home. Indonesian Journal Og Global Health Research, 6 (2), 679–688. https://doi.org/10.37287/ijghr.v6i2.2719
Indrawati, P. A., Sulistiowati, N. M. D., & Nurhesti, P. O. Y. (2018). Pengaruh Pelatihan Kader Kesehatan Jiwa terhadap Persepsi Kader dalam Merawat Orang dengan Gangguan Jiwa. Jurnal Keperawatan Jiwa, 6 (2), 71–75.
Johnson, L. J., Schopp, L. H., Waggie, F., & Frantz, J. M. (2022a). Challenges experienced by community health workers and their motivation to attend a self-management programme. African Journal of Primary Health Care and Family Medicine, 14 (1), 9. https://doi.org/10.4102/phcfm.v14i1.2911
Johnson, L. J., Schopp, L. H., Waggie, F., & Frantz, J. M. (2022b). Challenges experienced by community health workers and their motivation to attend a self-management programme. African Journal of Primary Health Care and Family Medicine, 14 (1), 1–9. https://doi.org/10.4102/phcfm.v14i1.2911
Kagarmanova, A., Mwesiga, M. D., Sisk, M. L., Kabagambe, C., Nyakaisiki, S., Marentette, T., & Ahern, L. N. (2022). Palliative care in Uganda: quantitative descriptive study of key palliative care indicators 2018-2020. BMC Palliative Care, 21 (1), 1–11. https://doi.org/10.1186/s12904-022-00930-7
Ligita, T., Yulanda, N. A., Balqis, B., & Maharani, D. (2024). How Were Palliative Care Assessments Performed by Students During a Clinical Nursing Experience? A Study in Interpretive Phenomenology Analysis. Indian Journal of Palliative Care, 30 (3), 200–206. https://doi.org/10.25259/IJPC_328_2023
Macrae, M. C., Fazal, O., & O’Donovan, J. (2020). Community health workers in palliative care provision in low-income and middle-income countries: A systematic scoping review of the literature. BMJ Global Health, 5 (5), 1–10. https://doi.org/10.1136/bmjgh-2020-002368
Mawoko, T. (2022). Peran Relawan Paliatif dalam Perawatan Paliatif Pasien Stroke. Media Husada Journal of Nursing Science, 3 (3), 273–281. https://mhjns.widyagamahusada.ac.id
Mehra, R., Boyd, L. M., Lewis, J. B., & Cunningham, S. D. (2020). Considerations for Building Sustainable Community Health Worker Programs to Improve Maternal Health. Journal of Primary Care and Community Health, 11 (1), 1–8. https://doi.org/10.1177/2150132720953673
Morgan, D. L., & Nica, A. (2020). Iterative Thematic Inquiry: A New Method for Analyzing Qualitative Data. International Journal of Qualitative Methods, 19 (1), 1. https://doi.org/10.1177/1609406920955118
Noorikhsan, F. F., Muharry, A., Annashr, N. N., Yogaswara, D., & Nurohman, T. (2024). Strengthening and Improving Interpersonal Communication Skills of Health Care Workers in Preventing Non-Communicable Diseases in Cipakat Village, Singaparna Subdistrict. Abdimas Galuh, 6 (2), 1590–1601.
Pedersen, L. M., Jakobsen, A. L., Buttenschøn, H. N., & Haagerup, A. (2023). Positive association between social capital and the quality of health care service: A cross-sectional study. International Journal of Nursing Studies, 137, 1–9. https://doi.org/10.1016/j.ijnurstu.2022.104380
Persson, H. Å., Ahlström, G., & Ekwall, A. (2022). Professionals´ readiness for change to knowledge-based palliative care at nursing homes: a qualitative follow-up study after an educational intervention. BMC Palliative Care, 21(1), 1–14. https://doi.org/10.1186/s12904-022-01018-y
Pornrattanakavee, P., Srichan, T., Seetalarom, K., Saichaemchan, S., Oer-areemitr, N., & Prasongsook, N. (2022). Impact of interprofessional collaborative practice in palliative care on outcomes for advanced cancer inpatients in a resource-limited setting. BMC Palliative Care, 21 (1), 1–9. https://doi.org/10.1186/s12904-022-01121-0
Powell, C., Brown, T., Yap, Y., Hallam, K., Takac, M., Quinlivan, T., Xenos, S., & Karimi, L. (2024). Emotional intelligence training among the healthcare workforce: a systematic review and meta-analysis. Frontiers in Psychology, 15, 1–18. https://doi.org/10.3389/fpsyg.2024.1437035
Putranto, R., Mudjaddid, E., Shatri, H., Adli, M., & Martina, D. (2017). Development and challenges of palliative care in Indonesia: Role of psychosomatic medicine. BioPsychoSocial Medicine, 11 (1), 1–5. https://doi.org/10.1186/s13030-017-0114-8
Rodríguez-Prat, A., Pergolizzi, D., Crespo, I., Balaguer, A., Porta-Sales, J., & Monforte-Royo, C. (2022). Control in patients with advanced cancer: an interpretative phenomenological study. BMC Palliative Care, 21 (1), 1–10. https://doi.org/10.1186/s12904-022-00984-7
Smith, J. A. ., Flowers, Paul., & Larkin, Michael. (2022). Interpretative phenomenological analysis : theory, method and research. In The Teoretical Foundation of IPA (2nd ed., Vol. 1, pp. 1–29). SAGE.
Sultan, M. A., Miller, E., Tikkanen, R. S., Singh, S., Kullu, A., Cometto, G., Fitzpatrick, S., Ajuebor, O., Gillon, N., Edward, A., Moleman, Y. P., Pandya, S., Park, I., Shen, J. Y., Yu, Y., Perry, H., Scott, K., & Closser, S. (2025). Competency-based education and training for Community Health Workers: a scoping review. BMC Health Services Research, 25 (1), 1–18. https://doi.org/10.1186/s12913-025-12217-7
Sun, G., Lemonde, M., & Tremblay, D. (2023). Experience of oncology nurses with cancer survivors during transition from acute oncology treatment to primary care. Canadian Oncology Nursing Journal, 33 (3), 336–341. https://doi.org/10.5737/23688076333336
WHO. (2018). Integrating Palliative Care and Symptom Relief into Primary Health Care: A WHO Guide for Planners, Implementers and Managers. I, 1–88.
Copyright (c) 2025 Indonesian Journal of Global Health Research

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



