Key Determinants of Family-Centered Care for Children with Leukemia
DOI:
https://doi.org/10.55927/ijcs.v1i12.12039Keywords:
Family-Centered Care, Health Status, Parental Knowledge, Parental Attitudes, Pediatric LeukemiaAbstract
This study examines the relationship between health status, parental knowledge, and parental attitudes with the application of family-centered care (FCC) for children with leukemia at Abdul Moelok Regional Hospital, Lampung Province. Using a quantitative approach with a cross-sectional design, 92 respondents were selected from a population of 1,200 leukemia patients treated between 2021 and 2022. Data were collected through a validated questionnaire that measured parental knowledge, attitudes, and health status, with analysis conducted using the gamma correlation test. The results indicate significant relationships between health status, parental knowledge, and parental attitudes with the implementation of FCC. Factors such as age, education, income, caregiving duration, and disease length influenced the health status and FCC application. The study also reveals that caregivers face challenges in providing care, particularly due to financial burdens and physical strain, impacting their quality of life. Additionally, cultural factors affect how parents communicate the diagnosis to children, with some families delaying disclosure based on cultural norms.
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Al Omari, O., Roach, E. J., Shakman, L., Al Hashmi, A., Sunderraj, S. J., Francis, F., & Joseph, M. A. (2021). The Lived Experiences of Mothers Who Are Parenting Children With Leukemia. Cancer Nursing, 44(6), E374–E381. https://doi.org/10.1097/NCC.0000000000000898
Allen, D., Scarinci, N., & Hickson, L. (2022). Effects of Patient- and Family-Centered Care for Young Adults With Chronic Health Conditions and Their Family Members: A Systematic Review. Emerging Adulthood, 10(3), 689–701. https://doi.org/10.1177/2167696819883458
Boshagh, F., & Hakim, A. (2022). Effect of Family-Centered Empowerment Model on Knowledge and Caring Performance of Mothers of Children with Leukemia : A Randomized Clinical Trial. 11(3).
Budiarty, S., & Nafianti, S. (2020). Menilai Kualitas Hidup Anak Penyandang Hemofilia. 47(6), 466–470.
Camiré-Bernier, É., Nidelet, E., Baghdadli, A., Demers, G., Boulanger, M. C., Brisson, M. C., Michon, B., Lauzier, S., & Laverdière, I. (2021). Parents’ experiences with home-based oral chemotherapy prescribed to a child diagnosed with acute lymphoblastic leukemia: A qualitative study. Current Oncology, 28(6), 4377–4391. https://doi.org/10.3390/curroncol28060372
dos Santos, L. G., & Mandetta, M. A. (2024). Information manual for the family of the child with leukemia: reception study. Africa Journal of Nursing and Midwifery, 37, 1–11. https://doi.org/10.37689/acta-ape/2024AO0022511
Ekman, I., Swedberg, K., Taft, C., Lindseth, A., Norberg, A., Brink, E., Carlsson, J., Dahlin-Ivanoff, S., Johansson, I. L., Kjellgren, K., Lidén, E., Öhlén, J., Olsson, L. E., Rosén, H., Rydmark, M., & Sunnerhagen, K. S. (2011). Person-centered care - Ready for prime time. European Journal of Cardiovascular Nursing, 10(4), 248–251. https://doi.org/10.1016/j.ejcnurse.2011.06.008
Guo, F., Li, L., Jiang, H., Yu, J., & Wang, Y. (2024). Effectiveness of a family empowerment program on caregiving capacity and adverse mood in caregivers of children with acute leukemia: a quasi-experimental study. BMC Nursing, 23(1), 1–9. https://doi.org/10.1186/s12912-024-01973-2
Han, J., Zhang, L., Yang, F., & Wang, L. (2024). Illness cognition and associated socio-demographic and clinical factors in parents of children with leukemia. BMC Psychology, 12(1), 1–10. https://doi.org/10.1186/s40359-024-01798-3
Hill, C., Knafl, K. A., & Santacroce, S. J. (2018). Family-Centered Care From the Perspective of Parents of Children Cared for in a Pediatric Intensive Care Unit: An Integrative Review. In Journal of Pediatric Nursing (Vol. 41, pp. 22–33). W.B. Saunders. https://doi.org/10.1016/j.pedn.2017.11.007
Hodgson, C. R., Mehra, R., & Franck, L. S. (2024). Child and Family Outcomes and Experiences Related to Family-Centered Care Interventions for Hospitalized Pediatric Patients: A Systematic Review. Children, 11(8). https://doi.org/10.3390/children11080949
Inhestern, L., Nasse, M. L., Krauth, K. A., Kandels, D., Rutkowski, S., Escherich, G., & Bergelt, C. (2024). Reintegration into school, kindergarten and work in families of childhood cancer survivors after a family-oriented rehabilitation program. Frontiers in Pediatrics, 12(March), 1–10. https://doi.org/10.3389/fped.2024.1288567
Jin, F., Tian, W., Xia, L., Yang, M., Chen, Y., Li, J., & Liu, L. (2024). Knowledge, attitude, and practice toward leukemia in the general population and among family members of patients with leukemia: A cross-sectional study. Heliyon, 10(5), e26276. https://doi.org/10.1016/j.heliyon.2024.e26276
Kemenkes RI. (2022). Profil Kesehatan Indonesia 2021. In Pusdatin.Kemenkes.Go.Id.
Lin, N., Jin, C., Zhu, J., Xu, H., & Zhou, H. (2023). Factors Affecting Family Management Among Chinese Parents of Children With Leukemia: A Multisite Study. Cancer Nursing, 46(4), 284–293. https://doi.org/10.1097/NCC.0000000000001154
Lin, Y. C., Liu, P. C., Gau, B. S., Tung, H. H., Hu, S. H., & Chen, C. W. (2023). Corrigendum to “Association between lifestyle-related, psychosocial factors and obesity among female adolescents in Taiwan” [Journal of Pediatric Nursing 68 (2023) E58–E68, (S0882596322002913), (10.1016/j.pedn.2022.11.011)]. Journal of Pediatric Nursing, 71, 150. https://doi.org/10.1016/j.pedn.2023.03.016
LoCastro, M., Sanapala, C., Wang, Y., Jensen-Battaglia, M., Wittink, M., Norton, S., Klepin, H. D., Richardson, D. R., Mendler, J. H., Liesveld, J., Huselton, E., O’Dwyer, K., Cortes, A. M., Rodriguez, C., Dale, W., & Loh, K. P. (2023). Patient-centered communication tool for older patients with acute myeloid leukemia, their caregivers, and oncologists: A single-arm pilot study. Cancer Medicine, 12(7), 8581–8593. https://doi.org/10.1002/cam4.5547
Lösemi, T. De, Sonra, T., Hastaların, Ç., Yaşar, Y., Kaya, Z., Güney, E., & Kirkiz, S. (2023). Assessment of the Knowledge , Attitudes , Anxiety , and Coping Strategies of Pediatric Patients and Parents after Leukemia Diagnosis in Türkiye. 139–140. https://doi.org/10.4274/tjh.galenos.2023.2023.0043
Maaoui, F., Moumni, I., Arboix-Calas, F., Safra, I., & Menif, S. (2022). Emotional and behavioral attitudes of Tunisian youth towards childhood leukemia: health education and primary prevention in perspective. BMC Public Health, 22(1), 1–12. https://doi.org/10.1186/s12889-022-14596-6
Marcia, T. S., & Nancy, C. Y. (2024). Review on Influencing factors of caregiver burden in parents of children with leukemia A descriptive review.
Najafi, K., & Rabari, D. (n.d.). Original Article The Effect of Family-Centered Empowerment Model on the Mothers ’ Knowledge and Attitudes about Thalassemia Disorder Background Key words.
Nopitasari, Eflin;et, A. (2024). Family Centered Care Berhubungan dengn Kecemasan Anak Usia Prasekolah yang Menjalani Hospitalisasi di UPTD RSUD Jen.Akhmad Yani Metro.Pdf.
Pemberton-Whiteley, Z., Nier, S., Geissler, J., Wintrich, S., Verhoeven, B., Christensen, R. O., Salek, S., Oliva, E. N., Ionova, T., & Bradley, J. (2023). Understanding Quality of Life in Patients With Acute Leukemia, a Global Survey. Journal of Patient-Centered Research and Reviews, 10(1), 21–30. https://doi.org/10.17294/2330-0698.1951
Punaglom, N. (2022). Integrative Review for a Family-centered Care Intervention to Promote Family Functioning in Families Living with Children with Chronic Illness. The Bangkok Medical Journal, 18(2), 131–140. https://doi.org/10.31524/bkkmedj.2022.23.001
Rafieemehr, H., Calhor, F., Esfahani, H., & Gholiabad, S. G. (2019). Risk of acute lymphoblastic leukemia: Results of a case-control study. Asian Pacific Journal of Cancer Prevention, 20(8), 2477–2483. https://doi.org/10.31557/APJCP.2019.20.8.2477
Rajabi, R., Forozy, M., Fuladvandi, M., & Asadabady, A. (2016). The Effect of Family-Centered Empowerment Model on the Knowledge , Attitudes and Self-efficacy of Mothers of Children with Asthma. 5(4). https://doi.org/10.21859/jne-05046
Seniwati, T., Rustina, Y., Nurhaeni, N., & Wanda, D. (2023). Patient and family-centered care for children: A concept analysis. Belitung Nursing Journal, 9(1), 17–24. https://doi.org/10.33546/bnj.2350
Seniwati, T., Wanda, D., & Nurhaeni, N. (2023). Effects of Patient and Family-Centered Care on Quality of Care in Pediatric Patients: A Systematic Review. Nurse Media Journal of Nursing, 13(1), 68–84. https://doi.org/10.14710/nmjn.v13i1.48114
Son, H. (2024). Family-Related Factors Influencing Resilience of Korean Adolescents and Young Adults with Childhood Cancer : A cross-sectional study. Reseach Square, 1–10. https://doi.org/DOI: https://doi.org/10.21203/rs.3.rs-4266688/v1
Sonkola, K., Kvalsvig, J. D., Brouwer, I., Holding, P., & Taylor, M. (2021). Parental Attitudes, Roles and Influences on Decision Making for Child Well-being on the South Coast of Kenya—a Descriptive Study. Child Care in Practice, 27(1), 54–71. https://doi.org/10.1080/13575279.2019.1626804
Tebbi, C. K. (2021). Etiology of acute leukemia: A review. In Cancers (Vol. 13, Issue 9). https://doi.org/10.3390/cancers13092256
Tremolada, M., Taverna, L., Bonichini, S., Putti, M. C., Pillon, M., & Biffi, A. (2020). Health locus of control in parents of children with leukemia and associations with their life perceptions and depression symptomatology. Children, 7(5), 1–12. https://doi.org/10.3390/children7050040
Woods, W. G., Roloff, J. S., Lukens, J. N., & Krivit, W. (1981). The occurrence of leukemia in patients with the Shwachman syndrome. The Journal of Pediatrics, 99(3), 425–428. https://doi.org/10.1016/S0022-3476(81)80336-8
World Health Organization. (2022). International Childhood Cancer Day 2022 – IARC. International Agency for Research on Cancer.
Wu, T., Fu, W., Xue, Y., Zhu, L., Ma, X., Wei, Y., Li, H., Wang, Y., Kang, M., Fang, Y., & Zhang, H. (2024). Health-related quality of life in children with childhood acute myeloid leukemia in China: A five-year prospective study. Heliyon, 10(11), e31948. https://doi.org/10.1016/j.heliyon.2024.e31948
Yamaji, N., Nagamatsu, Y., Kobayashi, K., Hasegawa, D., Yuza, Y., & Ota, E. (2022). Information needs of children with leukemia and their parents’ perspectives of their information needs: a qualitative study. BMC Pediatrics, 22(1), 1–9. https://doi.org/10.1186/s12887-022-03478-w
Yang, M. M., Liang, W., Zhao, H. H., & Zhang, Y. (2020). Quality analysis of discharge instruction among 602 hospitalized patients in China: A multicenter, cross-sectional study. BMC Health Services Research, 20(1), 1–8. https://doi.org/10.1186/s12913-020-05518-6
Yu, H., Li, L., Liu, C., Huang, W., Zhou, J., Fu, W., Ma, Y., Li, S., Chang, Y., Liu, G., & Wu, Q. (2017). Factors associated with the quality of life of family caregivers for leukemia patients in China. Health and Quality of Life Outcomes, 15(1). https://doi.org/10.1186/s12955-017-0628-6
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