Understanding the Multifaceted Roles of Families in Caring for Palliative Patients in the Community: A Systematic Literature Review
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Enhancing family support in community-based palliative care is a growing global priority given the family's role as the primary caregiver for long-term palliative care patients in the community. This is a systematic literature review that aimed to synthesize recent evidence on the roles and contributions of families in caring for palliative patients in the community. A literature search was conducted through PubMed and ScienceDirect databases using the keywords “family role” OR “family support” AND “palliative” OR “palliative care.” The PEO framework guided the selection process, focusing on Population: families of palliative patients; Exposure: family caregiving roles; and Outcome: fulfillment of palliative care needs. Nine articles published between 2020 and 2025 met the inclusion criteria. The review identified diverse and interrelated family roles, including providing emotional and social support, delivering direct care, coordinating with healthcare professionals, engaging in decision-making and communication, and facilitating health education. Families also carried significant social and cultural responsibilities while adopting protective and adaptive coping strategies. The findings highlight that families are not merely companions but act as care managers, communicators, and educators who critically influence the quality of home-based palliative care. A unique insight from this review is the emphasis on the transitional phase from hospital to home as a crucial period requiring enhanced family capacity, structured coordination, and psychosocial support. Strengthening family education, telemedicine-based coordination, and community linkages emerges as a vital strategy to ensure holistic and sustainable palliative care delivery within community settings. Community nurses need to involve and meet the needs of families as clients in a nursing care plan that does not only focus on the needs of palliative patients
Abdel-aziz, H. R., Elsaid, D., Zaghamir, F., & Ibrahim, A. M. (2025). Enhancing nursing’s role in community- based palliative care : closing gaps to improve patient outcomes. BMC Nursing, 24. https://doi.org/https://doi.org/10.1186/s12912-025-02959-4
Agustini, N. L. P. I. B., Swarjana, I. K., Israfil, I., & Suyasa, I. G. P. D. (2025). Development of a palliative end-of-life care ( PEOLC ) model based on transcultural nursing for patients in need of long-term care. Jurnal Ners, 20(2), 164–172. https://doi.org/https://orcid.org/0000-0001-9362-1540
Azhar, S., Herrmann-Johns, A., Wolff, D., Rechenmacher, M., Kaiser, U., & Wasner, M. (2025). “ I can’t do it anymore”: a qualitative study on the emergence of crisis in outpatient palliative care—the perspective of family caregivers. BMC Palliative Care, 24(1). https://doi.org/10.1186/s12904-025-01664-y
Bork-Zalewska1, J., Jarych, W., & Pawłowski, L. (2024). An overview of the role of family support in palliative care : a quasi-systematic review. Palliative Medicine in Practice, 1–13. https://doi.org/10.5603/pmp.102546
Capili, B. (2020). How Does Research Start? American Journal of Nursing, 120(10), 41–44. https://doi.org/10.1097/01.NAJ.0000718644.96765.b3
Dasat, M., Mulyono, S., Khasanah, U., & Hermawan, S. M. (2024). Family Perceptions of Palliative Care for Advanced-Stage Cancer Patients at Home. Jurnal Keperawatan Indonesia, 27(3), 175–185. https://doi.org/10.7454/jki.v27i3.1231
Do Prado, E., da Silva, M. M., Barreto, M. da S., da Silva, R. S., Kalinke, L. P., Ferreira, P. C., Dos Santos, M. J., & Marcon, S. S. (2024). Home-Based Palliative Care: Challenges Between Desire and the Reality of Returning Home. Texto e Contexto Enfermagem, 33, 1–17. https://doi.org/10.1590/1980-265X-TCE-2024-0090en
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(104). https://doi.org/10.1186/s12904-022-00986-5
Ghosh, M., Connell, B. O., Nguyen, H. T., Coventry, L., Towell-Barnard, A., Gallagher, O., Gullick, K., Gent, L., & Saunders, R. (2025). Patient and Family Involvement in Nursing Bedside Handover : A Qualitative Descriptive Study of Consumer Perceptions of Nursing Care. Nursing Reports, 15(51). https://doi.org/https://doi.org/10.3390/nursrep15020051
Gonçalves, B., Lusher, J., Cund, A., Sime, C., & Harkess-Murphy, E. (2025). Understanding the psychosocial burden of living with advanced COPD in the context of palliative care: A mixed methods study. Journal of Health Psychology. https://doi.org/10.1177/13591053251316504
Israfil, I., Luh, N., Inca, P., Agustini, B., & Swarjana, I. K. (2025). Developing a culture-based palliative nursing care model in hospitals : a phenomenological study. Healthcare in Low-Resource Settings, 13(S1). https://doi.org/10.4081/hls.2025
Jacob, S. L., Nayak, M. G., George, L. S., Macaden, L., & Braggs, P. L. (2025). Experiences and perspectives by family caregivers on a palliative care journey: A case report from India. Palliative Care and Social Practice, 19. https://doi.org/10.1177/26323524251355286
Kallis, G., Hodge, G., Wheat, H., Oh, T. M., & Pearce, S. (2025). Exploring the challenges experienced by patients and families using palliative and end-of-life care services: A qualitative focus group study. Palliative & Supportive Care, 23(May), e70. https://doi.org/10.1017/S1478951525000057
Kemenkes RI. (2023). Pedoman Penyelenggaraan Pelayanan Paliatif. Kemenkes RI, 4–37.
Kim, Y., & Kim, D. H. (2024). Interventions for family involvement enhance end-of-life care for hospitalized patients: an integrative review. BMC Nursing, 23(1). https://doi.org/10.1186/s12912-024-02538-z
Kishino, M., Ellis-Smith, C., Afolabi, O., & Koffman, J. (2022). Family involvement in advance care planning for people living with advanced cancer : A systematic mixed-methods review. Palliative Medicine, 36(3), 462–477. https://doi.org/10.1177/02692163211068282
Kreyer, C., Stecher, B., Pleschberger, S., & Ewing, G. (2024). What individual needs do family caregivers have in palliative home care, and how are they supported? A qualitative study of a supportive intervention. Supportive Care in Cancer, 32(11), 1–14. https://doi.org/10.1007/s00520-024-08904-6
Libório, M. P., Martins, C. A. P. S., Laudares, S., & Ekel, P. I. (2023). Method of preparing an international and national literature review for novice researchers. MethodsX, 10(March). https://doi.org/10.1016/j.mex.2023.102165
Maguraushe, K., & Ndlovu, B. M. (2024). The use of smart technologies for enhancing palliative care: A systematic review. Digital Health, 10. https://doi.org/10.1177/20552076241271835
Martina, D., Kustanti, C. Y., Dewantari, R., Sutandyo, N., Putranto, R., Shatri, H., Effendy, C., Heide, A. Van Der, Rijt, C. C. D. Van Der, & Rietjens, J. A. C. (2022). Advance care planning for patients with cancer and family caregivers in Indonesia : a qualitative study. BMC Palliative Care, 21(204). https://doi.org/10.1186/s12904-022-01086-0
McCauley, R., Ryan, K., McQuillan, R., & Foley, G. (2023). Mutual support between patients and family caregivers in palliative care: A qualitative study. Palliative Medicine, 37(10), 1520–1528. https://doi.org/10.1177/02692163231205130
Milberg, A., Liljeroos, M., Wåhlberg, R., & Krevers, B. (2020). Sense of support within the family: A cross-sectional study of family members in palliative home care. BMC Palliative Care, 19(1), 1–16. https://doi.org/10.1186/s12904-020-00623-z
Nysaeter, T. M., Olsson, C., Sandsdalen, T., Hov, R., & Larsson, M. (2024). Family caregivers’ preferences for support when caring for a family member with cancer in the late palliative phase who wishes to die at home – a grounded theory study. BMC Palliative Care, 23(1), 1–11. https://doi.org/10.1186/s12904-024-01350-5
Page, M. J., McKenzie, J. E., Bossuyt, P. M., Boutron, I., Hoffmann, T. C., Mulrow, C. D., Shamseer, L., Tetzlaff, J. M., Akl, E. A., Brennan, S. E., Chou, R., Glanville, J., Grimshaw, J. M., Hróbjartsson, A., Lalu, M. M., Li, T., Loder, E. W., Mayo-Wilson, E., McDonald, S., … Moher, D. (2021). The PRISMA 2020 statement: An updated guideline for reporting systematic reviews. Bmj, 372. https://doi.org/10.1136/bmj.n71
Paul, J., & Barari, M. (2022). Meta ‐ analysis and traditional systematic literature reviews — What , why , when , where , and how ? Psychology & Marketing, 39, 1099–1115. https://doi.org/https://doi.org/10.1002/mar.21657
Piamjariyakul, U., Smothers, A., Wang, K., Shafique, S., Wen, S., Petitte, T., Young, S., Sokos, G., & Smith, C. E. (2024). Palliative care for patients with heart failure and family caregivers in rural Appalachia: a randomized controlled trial. BMC Palliative Care, 23(1), 1–14. https://doi.org/10.1186/s12904-024-01531-2
Tan, A., Spice, R., & Sinnarajah, A. (2021). Family physicians supporting patients with palliative care needs within the patient medical home in the community: An appreciative inquiry study. BMJ Open, 11(12), 1–12. https://doi.org/10.1136/bmjopen-2021-048667
Tan, Y. H., Liang, X., Ming, W., Xing, H. M., Wang, Y., & Gao, Y. (2024). A scoping review of digital technology applications in palliative care. BMC Palliative Care, 23(1). https://doi.org/10.1186/s12904-024-01626-w
Tripodoro, V. A., Veloso, V. I., Víbora Martín, E., Kodba-Čeh, H., Bakan, M., Rasmussen, B. H., Zambrano, S. C., Joshi, M., Hálfdánardóttir, S. Í., Ásgeirsdóttir, G. H., Romarheim, E., Haugen, D. F., McGlinchey, T., Yildiz, B., Barnestein-Fonseca, P., Goossensen, A., Lunder, U., & van der Heide, A. (2024). ‘Someone must do it’: multiple views on family’s role in end-of-life care – an international qualitative study. Palliative Care and Social Practice, 18, 1–16. https://doi.org/10.1177/26323524241260425
WHO. (2020). Palliative Care. World Health Organization, 5 August. https://doi.org/https://www.who.int/news-room/fact-sheets/detail/palliative-care
WHPCA. (2020). Global Atlas of Palliative Care 2nd Edition. In The Worldwide Palliative Care Alliance. https://cdn.who.int/media/docs/default-source/integrated-health-services-(ihs)/csy/palliative-care/whpca_global_atlas_p5_digital_final.pdf?sfvrsn=1b54423a_3
Xu, Y., Liu, Y., Kang, Y., Wang, D., Zhou, Y., Wu, L., & Yuan, L. (2024). Experiences of family caregivers of patients with end-of-life cancer during the transition from hospital to home palliative care: a qualitative study. BMC Palliative Care, 23(1). https://doi.org/10.1186/s12904-024-01559-4
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