A Comprehensive Model for Understanding the Emotional Strain on Caregivers of Children with Cancer in Malaysia

Nurul Hasyimah Mat Rani; Nur Shuhana Mohd Sansuddin; Mazita Ahmad; Norsayyidatina Che Rozubi

doi:10.21834/e-bpj.v10iSI37.7628

Authors

Nurul Hasyimah Mat Rani Department of Guidance & Counselling, Faculty of Human Development, Sultan Idris Education University, Perak, Malaysia
Nur Shuhana Mohd Sansuddin Department of Guidance & Counselling, Faculty of Human Development, Sultan Idris Education University, Perak, Malaysia
Mazita Ahmad Department of Guidance & Counselling, Faculty of Human Development, Sultan Idris Education University, Perak, Malaysia
Norsayyidatina Che Rozubi Department of Guidance & Counselling, Faculty of Human Development, Sultan Idris Education University, Perak, Malaysia

DOI:

https://doi.org/10.21834/e-bpj.v10iSI37.7628

Keywords:

Counselling, Emotional challenges, Caregivers, Pediatric Cancer

Abstract

Parents of children with cancer face significant emotional challenges that impact their well-being. This study examines the emotional difficulties experienced by parents during their child's cancer treatment using a Design and Development Research approach. Semi-structured interviews with nine parents identified 44 emotional factors which were systematically refined into a final model consisting of 28 components through expert review by Interpretive Structural Modelling and the Fuzzy Delphi Method. The findings highlight the need for structured emotional support, counseling interventions and effective communication from healthcare providers. The study provides an evidence-based framework for psychosocial support services in pediatric oncology setting.

References

Ahmadnia, S., Ghalibaf, A. K., Kamkar, S., Mohamadzadeh, Z., & Ghalibafian, M. (2021). Survivor and parent engagement in childhood cancer treatment in Iran. ecancermedicalscience,15.

Amin, S. M., Khedr, M. A., Mansy, A. M. A., El-Monshed, A. H., Malek, M. G. N., & El-Ashry, A. M. (2024). Assessing caregiver stress and resource needs in pediatric cancer care. BMC nursing, 23(1), 911. https://doi.org/10.1186/s12912-024-02483-x

Anwar, Asiya & Afzal, Afzaal. (2024). Caregiver Distress and Burden among Parents of Children with Cancer.

Ashcraft, L. E., Asato, M., Houtrow, A. J., Kavalieratos, D., Miller, E., & Ray, K. N. (2019). Parent empowerment in pediatric healthcare settings: a systematic review of observational studies. The Patient-Patient-Centered Outcomes Research, 12, 199-212.

Atkins, J. C., & Padgett, C. R. (2024). Living with a Rare Disease: Psychosocial Impacts for Parents and Family Members–a Systematic Review. Journal of Child and Family Studies, 33(2), 617-636.

Blazin, L. J., Cecchini, C., Habashy, C., Kaye, E. C., & Baker, J. N. (2018). Communicating effectively in pediatric cancer care: translating evidence into practice. Children, 5(3), 40.

Bodryzlova, Y., Kim, A., Michaud, X., André, C., Bélanger, E., & Moullec, G. (2023). Social class and the risk of dementia: A systematic review and meta-analysis of the prospective longitudinal studies. Scandinavian journal of public health, 51(8), 1122–1135.

Cheung, A. T., Li, W. H. C., Ho, L. L. K., Chan, G. C. F., & Chung, J. O. K. (2021). Parental perspectives on promoting physical activity for their children surviving cancer: A qualitative study. Patient Education and Counselling, 104(7), 1719-1725.

Chu, H. C., & Hwang, G. J. (2008). A Delphi-Based Approach to Developing Expert Systems with the Cooperation of Multiple Experts. Expert Systems with Applications, 34, 26-40. https://doi.org/10.1016/j.eswa.2007.05.034

Dawson-Hahn, E., Koceja, L., Stein, E., Farmer, B., Grow, H. M., Saelens, B. E., Mendoza, J., & Pak-Gorstein, S. (2020). Perspectives of Caregivers on the Effects of Migration on the Nutrition, Health and Physical Activity of their Young Children: A Qualitative Study with Immigrant and Refugee Families. Journal of immigrant and minority health, 22(2), 274–281.

Efendi, D., Hasan, F., Natalia, R., Utami, A. R., Sonko, I., Asmarini, T. A., ... & Sari, D. (2022). Nursing care recommendation for pediatric COVID-19 patients in the hospital setting: A brief scoping review. Plos one, 17(2), e0263267.

Hajal, N. J., & Paley, B. (2020). Parental emotion and emotion regulation: A critical target of study for research and intervention to promote child emotion socialization. Developmental Psychology, 56(3), 403.

Joshi Poonam, L Gopichandran, Agrawal Uma Shanker, Parveen, Garg Rakesh, Tiwari Surya Kant (2025) Psychological distress and coping strategies among caregivers of children with cancer: a cross-sectional study ecancer 19 1872

Karimi Moghaddam, Z., Rostami, M., Zeraatchi, A., Mohammadi Bytamar, J., Saed, O., & Zenozian, S. (2023). Caregiving burden, depression, and anxiety among family caregivers of patients with cancer: An investigation of patient and caregiver factors. Frontiers in psychology, 14, 1059605. https://doi.org/10.3389/fpsyg.2023.1059605

Lewandowska A. (2022). The Needs of Parents of Children Suffering from Cancer-Continuation of Research. Children (Basel, Switzerland), 9(2), 144.

Lichtman, M. (2006). Qualitative research in education: A user’s guide. Thousand Oaks, CA: SAGE.

May, K., Van Hooff, M., Doherty, M., & Iannos, M. (2023). Experiences and perceptions of family members of emergency first responders with post-traumatic stress disorder: a qualitative systematic review. JBI Evidence Synthesis, 21(4), 629-668.

Ng, N. K. Y., Dudeney, J., & Jaaniste, T. (2023). Parent–Child Communication Incongruence in Pediatric Healthcare. Children, 11(1), 39.

Noh JY, Song JY, Yoon JG, Seong H, Cheong HJ, Kim WJ (2020) Safe hospital preparedness in the era of COVID-19: The Swiss cheese model. Int J Infect Dis 98:294–296.

Omer T. Y. (2024). Impact of Childhood Cancer on Family Functioning and Family Quality of Life in the Western Region of Saudi Arabia. Nursing research and practice, 2024, 6667978.

Polakova, K., Ahmed, F., Vlckova, K., & Brearley, S. G. (2024). Parents' experiences of being involved in medical decision making for their child with a life-limiting condition: A systematic review with narrative synthesis. Palliative medicine, 38(1), 7–24.

Polanco, A., Al-Saadi, R., Tugnait, S., Scobie, N., & Pritchard-Jones, K. (2022). Setting international standards for patient and parent involvement and engagement in childhood, adolescent and young adult cancer research: A report from a European Collaborative Workshop. Cancer reports (Hoboken, N.J.), 5(6), e1523.

Pollack, D. L. (2024). Maternal ambivalence in session: Helping mothers face mixed feelings toward their children with intensive short-term dynamic psychotherapy. Women & Therapy, 47(1), 58-88.

Richey, R. C. & Klein J. D. 2007. Design and development research: Methods, strategies, and issues. Mahwah, New Jersey: Lawrence Erlbaum.

Tan, W. L., Sambhi, S. K., & Shorey, S. (2024). Experiences of paediatric terminal oncology patients and their parents in palliative care: A qualitative systematic review. Journal of Pediatric Nursing.