Types of Support Among Informal Caregivers of Cancer Patients to Cancer Patients: A Case Study at the Tunku Laksamana Johor Cancer Foundation (YKTLJ)/ Bentuk Sokongan Penjaga Tidak Formal Pesakit Kanser kepada Pesakit Kanser: Kajian Kes Di Yayasan Kanser Tunku Laksamana Johor (YKTLJ)

Authors

  • Ahmad Khirul Nizam Ali School of Applied Psychology, Social Work and Policy, Universiti Utara Malaysia, 06010 Sintok, Kedah, Malaysia;
  • Fatimah Zailly Ahmad Ramli School of Applied Psychology, Social Work and Policy, Universiti Utara Malaysia, 06010 Sintok, Kedah, Malaysia; https://orcid.org/0000-0003-1004-7542 (unauthenticated)
  • Azlinda Sulaiman School of Applied Psychology, Social Work and Policy, Universiti Utara Malaysia, 06010 Sintok, Kedah, Malaysia

DOI:

https://doi.org/10.11113/sh.v18n3.2313

Keywords:

Informal caregivers, types of support, cancer patients, caregiving needs

Abstract

Informal caregivers of cancer patients play a critical role in supporting the patients’ daily needs, yet they often face significant physical, emotional, and social pressures. Maslow's Theory of Needs is applied to evaluate the fulfillment of informal caregivers' basic needs, while Caregiving Dynamics Theory is used to examine the balance between caregiving responsibilities and their personal needsThis qualitative study aims to explore the forms of support received and required by informal caregivers of cancer patients registered with the Tunku Laksamana Johor Cancer Foundation (YKTLJ). A total of seven caregivers were selected through purposive sampling, and data were collected using semi-structured interviews before being analysed through thematic analysis. The findings identify four main themes of support needed by caregivers, namely emotional and psychological support, family and social support, community and peer support, as well as knowledge-based support. The study shows that emotional pressure and psychological burden are the most dominant challenges, while family support is the most crucial element in ensuring effective caregiving. Community and peer support help caregivers reduce feelings of isolation and enhance their coping abilities when dealing with daily challenges. Access to knowledge and caregiving information significantly influences caregivers’ confidence and ability to manage the cancer patient. This study concludes that a comprehensive and well-structured support system is essential to strengthen the well-being of informal caregivers, thereby improving the quality of care provided to cancer patients. The study recommends that health agencies, NGOs, and community organisations collaborate to develop more accessible and holistic training, counselling, and social support programmes.

References

Abdullah, F., Hajar, S., & Mohamad, M. S. (2015). Cabaran dalam penjagaan tidak formal di Malaysia. Journal of the Faculty of Arts and Social Sciences, University of Malaya, 30, 41-56.

Ahmad, A. S., Doss, J. G., Ismail, S. M., Chen Kiong, S., Jelon, M. A., Thangavalu, L., & Lay Ling, C. N. (2023). Quality of life vs. supportive care needs for oral cancer caregivers: Are they related? Current Oncology, 30(2), 1733-1744.

Ali, A., Lim, H. L., Puslan, R. Z., Razali, N. H., & Lim, C. S. (2026). Validation of the Malay Version of the Caregiver Quality of Life Index–Cancer (MCQoL) among caregivers of cancer patients in Malaysia. PloS one, 21(1), e0335681.

Ali, A. K. N., Ahmad Ramli, F. Z., & Sulaiman, A. (2025). Cabaran penjagaan penjaga tidak formal pesakit kanser: Kajian kes di negeri Johor. The Malaysian Journal of Social Administration, 20(1). 109-127. DOI: https://doi.org/10.22452/20/109.127

Badger, T. A., Segrin, C., Sikorskii, A., Pasvogel, A., Weihs, K., Lopez, A. M., & Chalasani, P. (2019). Randomized controlled trial of supportive care interventions to manage psychological distress and symptoms in Latinas with breast cancer and their informal caregivers. Psychology and Health, 35(1), 87– 106.

Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77-101.

Baobaid, M. F., Saraf, M. A., Al-Mahdi, A. Y., Al-Goshae, H. A. A., Abdulghani, M. A., Jayaram, J., Anwar, H., Gazi, T.M., & Alabed, A. A. A. (2024). Mental health and care burden of informal caregivers for palliative patients in Selangor. Malaysian Journal of Public Health Medicine, 24(3), 262-271.

Cai, Y., Simons, A., Toland, S., Zhang, J., & Zheng, K. (2021). Informal caregivers’ quality of life and management strategies following the transformation of their cancer caregiving role: A qualitative systematic review. International Journal of Nursing Sciences, 8(2), 227-236.

Chan, S. L., Matsah, N. S. B., Yusuf, A. a. B., Khaidir, A. S. B. M., Hamdan, N. H. B., & Kamizi, Z. N. B. (2022). A review on family caregiving challenges in Malaysia. ProGCouns Journal of Professionals in Guidance and Counseling, 3(1), 1–9.

Cooper, R. A. (2021). “I am a caregiver”: Sense-making and identity construction through online caregiving narratives. Journal of Family Communication, 21(2), 77-89.

Dave, R., Friedman, S., Miller-Sonet, E., Moore, T., Peterson, E., Fawzy Doran, J., Wolf, G.B., Schuler, K.W., & Wilson, T. (2024). Identifying and addressing the needs of caregivers of patients with cancer: evidence on interventions and the role of patient advocacy groups. Future Oncology, 20(33), 2589-2602.

Dahlberg, M., Wannheden, C., Andersson, S., & Bylund, A. (2025). “Try to keep things going”–Use of various resources to balance between caregiving and other aspects of life: An interview study with informal caregivers of persons living with brain tumors in Sweden. European Journal of Oncology Nursing, 74, 102779.

Draman, Z. (2018). Pengurusan sokongan emosi terhadap penjaga pesakit kanser kanak-kanak di Hospital Universiti Sains Malaysia (HUSM). South East Asia Journal of Contemporary Business, Economics and Law, 17(3), 20-25.

Eldh, A. C., Årestedt, L., & Berterö, C. (2020). Quotations in qualitative studies: Reflections on constituents, custom, and purpose. International Journal of Qualitative Methods, 19, 1-6. DOI: https://doi.org/10.1177/1609406920969268

Filipponi, C., Masiero, M., Chichua, M., Traversoni, S., & Pravettoni, G. (2025). Navigating the emotional landscape: exploring caregivers’ journey alongside breast cancer survivors with chronic pain. Supportive Care in Cancer, 33(1), 32.

Fisher, C. L., Mullis, M. D., Kastrinos, A., Wollney, E., Weiss, E. S., Sae-Hau, M., & Bylund, C. L. (2020). “Home wasn’t really home anymore”: Understanding caregivers’ perspectives of the impact of blood cancer caregiving on the family system. Supportive Care in Cancer, 29(6), 3069–3076.

Frechette, J., Bitzas, V., Aubry, M., Kilpatrick, K., & Lavoie-Tremblay, M. (2020). Capturing lived experience: Methodological considerations for interpretive phenomenological inquiry. International Journal of Qualitative Methods, 19, 1-12. DOI: https://doi.org/10.1177/1609406920907254

Fu, L., Kim, S. H., Garcia, D. D., Lambert, M., Rivera, L. R., Hayward, M., Vieira, C., Parikh, A., Yu, P., & Song, L. (2025). Supportive Care Needs and Related Interventions in Patients with Pancreatic Cancer and Their Informal Caregivers: A Scoping Review. Journal of Gastrointestinal Cancer, 56(1), 98-114.

García‐Carmona, M., García‐Torres, F., Jabłoński, M. J., Solís, Á. G., Jaén‐Moreno, M. J., Moriana, J. A., Moreno-Díaz, M. J., & Aranda, E. (2021). The influence of family social support on quality of life of informal caregivers of cancer patients. Nursing Open, 8(6), 3411–3419.

Gjerset, G. M., Kiserud, C. E., Wisløff, T., McCarthy, J. B., & Thorsen, L. (2023). Perceived burden and need for support among caregivers of cancer patients. Acta Oncologica, 62(7), 794-802.

Gray, T. F., Azizoddin, D. R., & Nersesian, P. V. (2019). Loneliness among cancer caregivers: A narrative review. Palliative & Supportive Care, 18(3), 359–367.

Hagedoorn, E. I. (2019). Collaborative partnership between family caregivers and nurses in the care of older hospitalized persons. [Thesis fully internal (DIV), University of Groningen]. Rijksuniversiteit Groningen.

Haier, J., & Schaefers, J. (2022). Economic perspective of cancer care and its consequences for vulnerable groups. Cancers, 14(13), 3158.

Hennink, M. M., Kaiser, B. N., & Marconi, V. C. (2016). Code saturation versus meaning saturation. Qualitative Health Research, 27(4), 591 608.

Hughes, M. C., Afrin, S., & Hamlish, T. (2023). Effectiveness of skill-building interventions for informal caregivers of adults with cancer: A systematic review. Journal of Cancer Education, 38(2), 390-397.

Husić, S., Miletić, B., Boskovic, S., Jerlekovic, M., Friganovic, A., & Vejzovic, V. (2025). Invisible But Essential: A Qualitative Study on the Experiences of Informal Caregivers in Home-based Palliative Care. INQUIRY: The Journal of Health Care Organization, Provision, and Financing, 62, 1-13.

Kedia, S. K., Collins, A., Dillon, P. J., Akkus, C., Ward, K. D., & Jackson, B. M. (2019). Psychosocial interventions for informal caregivers of lung cancer patients: A systematic review. Psycho-Oncology, 29(2), 251–262.

Khera, N., Kumbamu, A., Langer, S. L., Jatoi, A., Kamath, C. C., Mathew, E., Zafar, Y.S., & Griffin, J. M. (2020). Developing an educational intervention to address financial hardship in cancer patients. Mayo Clinic Proceedings Innovations Quality & Outcomes, 4(4), 424–433.

Kroll, J. L., Kim, S., Cho, D., Weathers, S., Chen, A. B., Smith, G., Bruera, E., & Milbury, K. (2022).Financial distress and its associated burden in couples coping with an advanced cancer. Supportive Care in Cancer, 30(5), 4485–4495.

Lindt, N., van Berkel, J., & Mulder, B. C. (2020). Determinants of overburdening among informal carers: A systematic review. BMC Geriatrics, 20(1), 304.

Lütscher, J., Siegenthaler, C. H., Hertler, C., Blum, D., Windisch, P., Shaker, R. G., Schröder, C., & Zwahlen, D. R. (2022). Retrospective analysis of emotional burden and the need for support of patients and their informal caregivers after palliative radiation treatment for brain metastases. Current Oncology, 29(6).

Malaysia National Cancer Registry Report (2024) Cancer Statistics in Malaysia. Retrieved from https://www.nci.moh.gov.my/ Retrieved on 12 January 2025

Maslow, A. H. (1943). A theory of human motivation. Psychological Review, 50(4), 370–396.

Molassiotis, A., & Wang, M. (2022). Understanding and supporting informal cancer caregivers. Current Treatment Options in Oncology, 23(4), 494–513.

Morgan, S. P., Lengacher, C. A., & Rodriguez, C. S. (2022). Caregiver burden in caregivers of patients with advanced stage cancer: A concept analysis. European Journal of Oncology Nursing, 60, 102152.

Oechsle, K. (2024). Family caregivers-challenging or valuable resource? Onkologie, 30 (SUPPL 1), 7-12.

Papadakos, J., Ugas, M., Quartey, N. K., Papadakos, C., & Giuliani, M. E. (2023). Assessing the comprehensive training needs of informal caregivers of cancer patients: a qualitative study. Current Oncology, 30(4), 3845-3858.

Pasek, M., Goździalska, A., Jochymek, M., & Caruso, R. (2023). Social Support in a Cancer Patient-Informal Caregiver DYAD: A Scoping review. Cancers, 15(6), 1754.

Ratnapradipa, K. L., Ranta, J., Napit, K., Luma, L. B., Robinson, T., Dinkel, D., Schabloske, L., & Watanabe‐Galloway, S. (2022). Qualitative analysis of cancer care experiences among rural cancer survivors and caregivers. The Journal of Rural Health, 38(4), 876–885.

Robbins, R., Cole, R., Ejikeme, C., Orstad, S. L., Porten, S., Salter, C. A., Nolasco, T. S., Vieira, D., & Loeb, S., (2022). Systematic review of sleep and sleep disorders among prostate cancer patients and caregivers: a call to action for using validated sleep assessments during prostate cancer care. Sleep Medicine, 94, 38– 53.

Saimaldaher, Z. H., & Wazqar, D. Y. (2019). Relationships between caregiving stress, mental health and physical health in family caregivers of adult patients with cancer: implications for nursing practice. Scandinavian Journal of Caring Sciences, 34(4), 889–898.

Sandelowski, M. (1995). Sample size in qualitative research. Research in nursing & health, 18(2), 179-183.

Smith, M., Brown, M., Ritchie, L., Papadopoulou, C., & Tolson, D. (2021). Living with dementia in supported housing: A systematic review and thematic synthesis of qualitative research. Health & Social Care in the Community, 30(3), e589-e604.

Su, Z., McDonnell, D., Liang, B., Kue, J., Li, X., Šegalo, S., Advani, S., Flores, B. E., & Wang, J. (2021). Technology-based Health Solutions for Cancer Caregivers to Better Shoulder the Impact of COVID-19: A Systematic Review Protocol. Research Square, rs.3.rs-66218.

Tranberg, M., Andersson, M., Nilbert, M., & Rasmussen, B. H. (2021). Co-afflicted but invisible: A qualitative study of perceptions among informal caregivers in cancer care. Journal of Health Psychology, 26(11), 1850-1859.

Treanor, C.J. (2020). Psychosocial support interventions for cancer caregivers: Reducing caregiver burden. Current Opinion in Supportive and Palliative Care, 14 (3), 247 - 262

Too, W., Lelei, F., Adam, M., & Halestrap, P. (2023). Preparedness, resilience and unmet needs of informal caregivers of advanced cancer patients in a Regional Mission Hospital in Kenya: Qualitative Study. BMC Palliative Care, 22(1).

Weiss, C. R., Baker, C., Gillespie, A., & Jones, J. (2023). Ambiguous loss in family caregivers of loved ones with cancer, a synthesis of qualitative studies. Journal of Cancer Survivorship, 17(2), 484-498.

Williams, L. A. (2008). Theory of caregiving dynamics. Middle range theory for nursing, 261-276.

Young, D. S., & Casey, E. A. (2019). An examination of the sufficiency of small qualitative samples. Social Work Research, 43(1), 53-58.

Zubaidi, A. Z. S., Ariffin, F., Oun, C. T. C., & Katiman, D. (2020). Caregiver burden among informal caregivers in the largest specialized palliative care unit in Malaysia: a cross-sectional study. BMC Palliative Care, 19(1). 186-201.

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2026-09-16

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Types of Support Among Informal Caregivers of Cancer Patients to Cancer Patients: A Case Study at the Tunku Laksamana Johor Cancer Foundation (YKTLJ)/ Bentuk Sokongan Penjaga Tidak Formal Pesakit Kanser kepada Pesakit Kanser: Kajian Kes Di Yayasan Kanser Tunku Laksamana Johor (YKTLJ). (2026). Sains Humanika, 18(3), 141-151. https://doi.org/10.11113/sh.v18n3.2313