Families Experience and Deal With Palliative Care Provided To Their Family Members

Nilawati Nilawati; Rados Kristian Nazara

doi:10.55606/ijhs.v4i2.3988

Authors

Nilawati Nilawati Sekolah Tinggi Ilmu Kesehatan Columbia Asia Medan
Rados Kristian Nazara Sekolah Tinggi Ilmu Kesehatan Columbia Asia Medan

DOI:

https://doi.org/10.55606/ijhs.v4i2.3988

Keywords:

Experience, Family, Palliative Care

Abstract

This study aims to explore the experiences of families who have members undergoing palliative care. Using a phenomenological approach, we conducted in-depth interviews with six families involved in home palliative care. Data were analyzed using Colaizzi analysis to identify the main themes that emerged from the family's experiences. The study results show that families' experiences with palliative care patients are complex and emotionally charged. The main themes that emerged included: 1) Family emotional feelings, 2) Family obstacles in facing the treatment process and 3) Family support. This study provides in-depth insight into families' experiences with palliative care patients, highlighting the complexities, challenges, and needs involved in caring for an ill family member. Clinical implications of these findings include the importance of supporting families with appropriate resources and services, improving family communication and engagement in care, and recognizing the importance of emotional and social support in strengthening family well-being throughout the palliative care journey.

Downloads

Download data is not yet available.

References

Harrop, E., Byrne, A., Nelson, A., & Fielding, K. (2020). Informal caregivers’ experiences of formal end-of-life care: A systematic review of qualitative evidence. Palliative Medicine, 34(7), 914-929.

Hendricks, B. A., et.al. (2019). The project ENABLE Cornerstone randomized pilot trial: Protocol for lay navigator-led early palliative care for African-American and rural advanced cancer family caregivers. Contemporary Clinical Trials Communications, 16, 100485. https://doi.org/10.1016/j.conctc.2019.100485

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

Mahrer-Imhof, R., Jaggi, S., & Roe, C. (2019). Palliative care during the care of elderly people in nursing homes: A qualitative exploration of the experiences of formal caregivers. Scandinavian Journal of Caring Sciences, 33(3), 600-608.

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

Misgiyanto, Misgiyanto, and Dwi Susilawati. "Hubungan antara Dukungan Keluarga dengan Tingkat Kecemasan Penderita Kanker Serviks Paliatif." Jurnal Keperawatan, vol. 5, no. 1, Jan. 2014, doi:10.22219/jk.v5i1.1855.

Tang, J. Y. M., Ho, A. H. Y., Luo, N., Wong, K. Y. K., Lim, S. T., Choo, P. Y., ... & Neimeyer, R. A. (2019). Factors associated with congruence between preferred and actual place of death among Hong Kong Chinese adult patients receiving palliative care. Journal of Pain and Symptom Management, 58(5), 773-782.

Tarigan, R. (2020). Experiences Of Cancer Patients With Palliative Care At The Reference Hospital In Medan City. 07(10), 1360–1367.

Taylor, P., Fettes, L., & Griffiths, A. (2021). A phenomenological study exploring family caregiver experiences of palliative care during COVID-19. BMJ Supportive & Palliative Care, bmjspcare-2021-003318.

The Economist Intelligence Unit. (2015). Quality of death index. Lien Foundation

WHO. (2020). Palliative Care. Retrieved from https://www.who.int/news-room/fact-sheets/detail/palliative-care

Wright, B., & Forbes, K. (2020). The experiences of family carers in home-based palliative care: A qualitative systematic review and thematic synthesis. Palliative Medicine, 34(9), 1162-1176.

Xu, J., Zhao, M., Vrosgou, A., Chin, N., Yu, W., Liu, C., Zhang, H., Ding, C., Roth, N. W., Pan, Y., Liu, L., Wang, Y., & Wang, Y. (2021). Barriers to Medication Adherence in a Rural- Urban Dual Cconomy : A Multi-Stakeholder Qualitative Study. BMC Health Services Research, 21(799), 1-9. https://doi.org/10.1186/s12913-021-06789-3

Zhuang, Q., et.al. (2022). Longitudinal patterns and predictors of healthcare utilization among cancer patients on home-based palliative care in Singapore: a group-based multi-trajectory analysis. BMC Medicine, 20(1), 1–16. https://doi.org/10.1186/s12916-022-02513-y