Understanding the Determinants of Well-Being: Self-Management and Quality of Life in Children Undergoing Hemodialysis
DOI:
https://doi.org/10.48047/y0q9mm22Keywords:
Hemodialysis, Pediatric Nursing, Health-Related Quality of life, Self-ManagementAbstract
Background: Children undergoing hemodialysis face significant challenges that impair their health-related quality of life (HRQoL). Self-management is considered crucial for improving outcomes, but its specific relationship with HRQoL in this population remains underexplored.
Aim: This study aimed to assess the relationship between self-management practices and HRQoL in children undergoing maintenance hemodialysis.
Methods: A descriptive, cross-sectional correlation study was conducted with 51 pediatric hemodialysis patients. Data were collected using a structured interview questionnaire, a validated pediatric self-management scale, and the Parent Proxy version of the Pediatric Quality of Life Inventory 3.0 End-Stage Renal Disease module.
Results: The majority of children (98.1%) reported poor or fair self-management levels. Child-reported total self-management demonstrated a strong positive correlation with parent-reported total HRQoL (r= 0.81, p<0.001). In multiple linear regression analysis, controlling family income and dialysis frequency, the child's total self-management score was the strongest and most significant predictor of HRQoL (β = 0.79, p<0.001), explaining 71.3% of the variance.
Conclusion: Self-management practices, particularly in nutrition and stress management, are the principal determinant of HRQoL for children on hemodialysis. The findings strongly advocate for integrating structured, competency-based self-management support into routine nursing care to enhance the well-being of this vulnerable population.
Downloads
References
Aier, A., Pais, P., & Raman, V. (2022). Psychological aspects in children and parents of children with chronic kidney disease and their families. Clinical and Experimental Pediatrics, 65(5), 222. https://doi.org/10.3345/CEP.2021.01004
Biagioli, V., Spitaletta, G., Kania, V., Mascolo, R., Gawronski, O., Liburdi, A., Manzi, G., Salata, M., Vellone, E., Tiozzo, E., & Dall’Oglio, I. (2022). Instruments Measuring Self-Care in Children and Young Adults With Chronic Conditions: A Systematic Review. Frontiers in Pediatrics, 10, 832453. https://doi.org/10.3389/FPED.2022.832453/FULL
Billany, R. E., Thopte, A., Adenwalla, S. F., March, D. S., Burton, J. O., & Graham-Brown, M. P. M. (2023). Associations of health literacy with self-management behaviours and health outcomes in chronic kidney disease: a systematic review. Journal of Nephrology, 36(5), 1267–1281. https://doi.org/10.1007/S40620-022-01537-0/TABLES/3
Bravo, L., Killela, M. K., Reyes, B. L., Santos, K. M. B., Torres, V., Huang, C. C., & Jacob, E. (2020). Self-Management, Self-Efficacy, and Health-Related Quality of Life in Children With Chronic Illness and Medical Complexity. Journal of Pediatric Health Care, 34(4), 304–314. https://doi.org/10.1016/J.PEDHC.2019.11.009
Catarino, M., Charepe, Z., & Festas, C. (2021). Promotion of Self-Management of Chronic Disease in Children and Teenagers: Scoping Review. Healthcare, 9(12), 1642. https://doi.org/10.3390/HEALTHCARE9121642
Clavé, S., Tsimaratos, M., Boucekine, M., Ranchin, B., Salomon, R., Dunand, O., Garnier, A., Lahoche, A., Fila, M., Roussey, G., Broux, F., Harambat, J., Cloarec, S., Menouer, S., Deschenes, G., Vrillon, I., Auquier, P., & Berbis, J. (2019). Quality of life in adolescents with chronic kidney disease who initiate haemodialysis treatment. BMC Nephrology, 20(1), 1–10. https://doi.org/10.1186/S12882-019-1365-3/TABLES/4
Dryjańska, N., & Kiliś-Pstrusińska, K. (2023). Depression in Children and Adolescents with Chronic Kidney Disease—Review of Available Literature. Journal of Clinical Medicine 2023, Vol. 12, Page 3554, 12(10), 3554. https://doi.org/10.3390/JCM12103554
Flythe, J. E., Chang, T. I., Gallagher, M. P., Lindley, E., Madero, M., Sarafidis, P. A., Unruh, M. L., Wang, A. Y. M., Weiner, D. E., Cheung, M., Jadoul, M., Winkelmayer, W. C., Polkinghorne, K. R., Adragão, T., Anumudu, S. J., Chan, C. T., Cheung, A. K., Costanzo, M. R., Dasgupta, I., … Wilkie, M. (2020). Blood pressure and volume management in dialysis: conclusions from a Kidney Disease: Improving Global Outcomes (KDIGO) Controversies Conference. Kidney International, 97(5), 861–876. https://doi.org/10.1016/J.KINT.2020.01.046
Goldstein, S. L., Graham, N., Warady, B. A., Seikaly, M., McDonald, R., Burwinkle, T. M., Limbers, C. A., & Varni, J. W. (2008). Measuring Health-Related Quality of Life in Children With ESRD: Performance of the Generic and ESRD-Specific Instrument of the Pediatric Quality of Life Inventory (PedsQL). American Journal of Kidney Diseases, 51(2), 285–297. https://doi.org/10.1053/J.AJKD.2007.09.021
Harada, R., Hamasaki, Y., Okuda, Y., Hamada, R., & Ishikura, K. (2021). Epidemiology of pediatric chronic kidney disease/kidney failure: learning from registries and cohort studies. Pediatric Nephrology 2021 37:6, 37(6), 1215–1229. https://doi.org/10.1007/S00467-021-05145-1
Kamath, N., Iyengar, A., George, N., & Luyckx, V. A. (2019). Risk Factors and Rate of Progression of CKD in Children. Kidney International Reports, 4(10), 1472–1477. https://doi.org/10.1016/J.EKIR.2019.06.004
Lee, M. C., Wu, S. F. V., Hsieh, N. C., & Tsai, J. M. (2016). Self-Management Programs on eGFR, Depression, and Quality of Life among Patients with Chronic Kidney Disease: A Meta-Analysis. Asian Nursing Research, 10(4), 255–262. https://doi.org/10.1016/j.anr.2016.04.002
Lee, S. Y., & Shin, H. (2018). [Self-Management Experiences of the Adolescents with Chronic Kidney Disease]. Journal of Korean Academy of Nursing, 48(3), 266–278. https://doi.org/10.4040/JKAN.2018.48.3.266
Mizerska-Wasiak, M., Adamczuk, D., Cichoń-Kawa, K., Miklaszewska, M., Szymanik-Grzelak, H., Pietrzyk, J. A., Pukajło-Marczyk, A., Zwolińska, D., Rybi-Szumińska, A., Wasilewska, A., Bieniaś, B., Sikora, P., Firszt-Adamczyk, A., Stankiewicz, R., Szczepańska, M., & Pańczyk-Tomaszewska, M. (2021). Health-related quality of life in children with immunoglobulin A nephropathy – results of a multicentre national study. Archives of Medical Science : AMS, 17(1), 84. https://doi.org/10.5114/AOMS.2020.100367
Modi, A. C., Pai, A. L., Hommel, K. A., Hood, K. K., Cortina, S., Hilliard, M. E., Guilfoyle, S. M., Gray, W. N., & Drotar, D. (2012). Pediatric self-management: a framework for research, practice, and policy. Pediatrics, 129(2). https://doi.org/10.1542/PEDS.2011-1635
Morris, A., & Lycett, D. (2021). Behavioural strategies to self-manage low-potassium diets in chronic kidney disease. Journal of Renal Care, 47(3), 160–168. https://doi.org/10.1111/JORC.12361
Peruzzi, L., & Coppo, R. (2020). IgA vasculitis nephritis in children and adults: one or different entities? Pediatric Nephrology 2020 36:9, 36(9), 2615–2625. https://doi.org/10.1007/S00467-020-04818-7
Pungchompoo, W., Parinyajittha, S., Pungchompoo, S., & Kumtan, P. (2020). Effectiveness of a self-management retraining program improving the quality of life of people receiving continuous ambulatory peritoneal dialysis. Nursing & Health Sciences, 22(2), 406–415. https://doi.org/10.1111/NHS.12672
Riegel, B., Westland, H., Iovino, P., Barelds, I., Bruins Slot, J., Stawnychy, M. A., Osokpo, O., Tarbi, E., Trappenburg, J. C. A., Vellone, E., Strömberg, A., & Jaarsma, T. (2021). Characteristics of self-care interventions for patients with a chronic condition: A scoping review. International Journal of Nursing Studies, 116, 103713. https://doi.org/10.1016/J.IJNURSTU.2020.103713
Russo, K. (2022). Assessment and Treatment of Adolescents With Chronic Medical Conditions. Journal of Health Service Psychology, 48(2), 69. https://doi.org/10.1007/S42843-022-00059-4
Sezer, T. A., Çavuşoğlu, H., & Düzova, A. (2021). Self-management program for adolescents with chronic kidney disease: A randomized controlled trial. Journal of Renal Care, 47(3), 146–159. https://doi.org/10.1111/jorc.12357
Stern-Zimmer, M., Calderon-Margalit, R., Skorecki, K., & Vivante, A. (2021). Childhood risk factors for adulthood chronic kidney disease. Pediatric Nephrology, 36(6), 1387–1396. https://doi.org/10.1007/S00467-020-04611-6/METRICS
Tavri, V., Mihopoulos, A., Perdikaris, P., Tavri, V., Mihopoulos, A., & Perdikaris, P. (2023). Quality of life of children and adolescents with chronic kidney disease: A review of the literature. Https://Wjarr.Com/Sites/Default/Files/WJARR-2023-0153.Pdf, 17(2), 266–274. https://doi.org/10.30574/WJARR.2023.17.2.0153
Tharwat, H., El-Shahat, M., Farouk Mohamed, M., & Kafl, R. H. (2023). Effect of Educational Program regarding Self-Care Health Behavior on knowledge and practices of Hemodialysis’ Adolescents. Egyptian Journal of Health Care, 14(3), 805–820. https://doi.org/10.21608/EJHC.2023.321708
Thompson, A. L., Schaefer, M. R., McCarthy, S. R., Hildenbrand, A. K., Cousino, M. K., Marsac, M. L., Majeski, J., Wohlheiter, K., & Kentor, R. A. (2023). Competencies for Psychology Practice in Pediatric Palliative Care. Journal of Pediatric Psychology, 48(7), 614–622. https://doi.org/10.1093/JPEPSY/JSAD007
Town, R., Hayes, D., March, A., Fonagy, P., & Stapley, E. (2023). Self-management, self-care, and self-help in adolescents with emotional problems: a scoping review. European Child & Adolescent Psychiatry 2023 33:9, 33(9), 2929–2956. https://doi.org/10.1007/S00787-022-02134-Z
Varni, J. W., Delamater, A. M., Hood, K. K., Driscoll, K. A., Wong, J. C., Adi, S., Yi-Frazier, J. P., Grishman, E. K., Faith, M. A., Corathers, S. D., Kichler, J. C., Miller, J. L., Raymond, J. K., Doskey, E. M., Aguirre, V., Heffer, R. W., & Wilson, D. P. (2018). Diabetes management mediating effects between diabetes symptoms and health-related quality of life in adolescents and young adults with type 1 diabetes. Pediatric Diabetes, 19(7), 1322–1330. https://doi.org/10.1111/PEDI.12713
Wee, L. X., Tan, P. S. T., & Chen, H. C. (2022). Experiences and Needs of Families Caring for Children and Adolescents With Chronic Kidney Disease: A meta-Synthesis. Journal of Pediatric Nursing, 63, 52–63. https://doi.org/10.1016/J.PEDN.2021.12.028
Wiemann, C. M., & Zimmerman, C. T. (2023). Parent-Proxy Health-Related Quality of Life: Assessment Considerations and Clinical Implications for Improving Health-Related Quality of Life. The Journal of Adolescent Health : Official Publication of the Society for Adolescent Medicine, 72(1), 1–2. https://doi.org/10.1016/J.JADOHEALTH.2022.09.015
World Health Organization. (2022). World mental health report: Transforming mental health for all. World Mental Health Report: Transforming Mental Health for All. https://www.who.int/publications/i/item/9789240049338
Downloads
Published
Issue
Section
License
Copyright (c) 2025 Sara Mohamed Ali Fayed, Amal Ahmed Khalil, Rehab Hanie EL-Kazaz, Hanaa Mohamed Ibrahim Nassar (Author)
This work is licensed under a Creative Commons Attribution 4.0 International License.
You are free to:
- Share — copy and redistribute the material in any medium or format for any purpose, even commercially.
- Adapt — remix, transform, and build upon the material for any purpose, even commercially.
- The licensor cannot revoke these freedoms as long as you follow the license terms.
Under the following terms:
- Attribution — You must give appropriate credit , provide a link to the license, and indicate if changes were made . You may do so in any reasonable manner, but not in any way that suggests the licensor endorses you or your use.
- No additional restrictions — You may not apply legal terms or technological measures that legally restrict others from doing anything the license permits.
Notices:
You do not have to comply with the license for elements of the material in the public domain or where your use is permitted by an applicable exception or limitation .
No warranties are given. The license may not give you all of the permissions necessary for your intended use. For example, other rights such as publicity, privacy, or moral rights may limit how you use the material.
