Research Article

Assessment of the Quality of Life of the Caregiver of Pediatric Patients with Chronic Kidney Disease in a Tertiary Health Care Facility

Asma Hamoud Alruwaili* and Khaled Abdulaziz Alsaran and Abdulaziz Abdullah Alshathri

Published: 06 March, 2024 | Volume 8 - Issue 1 | Pages: 032-038

Background: Long-term care for patients with chronic kidney disease, whether in the pre or post-dialysis period, has a destructive impact on patients and their caregivers that can significantly worsen their quality of life. 
Objectives: To assess the quality of life (QOL) among caregivers of children suffering from chronic kidney disease and to identify the possible factors affecting their quality of life. 
Subjects and methods: Between March 2023 and May 2023, a cross-sectional questionnaire-based study was conducted at King Saud Medical City for caregivers of all pediatric patients aged from 6 months to 14 years with CKD stage-3B and beyond who have been followed up for at least three months in the pre or post-dialysis period since 2015. The study applied the World Health Organization Quality of Life Questionnaire (WHOQOL-BREF) to evaluate the caregivers’ quality of life. 
Result: A total of 95 caregivers were involved in the study. The age ranged between 24 and 53 years, with an arithmetic mean of 39.3 and a standard deviation of (± 6.6) years, and almost two-thirds (65.3%) were Saudi nationals. Most pediatric patients were on peritoneal renal dialysis (41%), whereas 29.5% were on hemodialysis. The mean and SD of the overall score was 56.10 ± 17.40 out of a possible range of 0-100. Regarding its domains, the highest score was observed regarding the social domain (62.11 ± 21.12), whereas the lowest was the physical domain (49.55 ± 18.42). After controlling for confounding, married, high socio-economic, and more educated caregivers have higher QOL scores than singles, low socio-economic, and lower knowledgeable caregivers, and the three factors together were responsible for approximately 41% variability of the QOL score (r – square = 0.406). Bivariate Pearson correlation showed significant correlations among different quality-of-life domains (p < 0.001). 
Conclusion: There was a significant association between quality-of-life scores and demographic characteristics of chronic kidney disease caregivers; they need the highest support to cope with their delicate patients. 

Read Full Article HTML DOI: 10.29328/journal.jcn.1001123 Cite this Article Read Full Article PDF


QOL: Quality of Life; PD: Peritoneal Dialysis; HD: Hemodialysis; CKD: Chronic Kidney Disease; HRQOL: Health-Related Quality of Life


  1. Abbasi A, Rahmani H, Shariati A, Asayesh H, Ashrafrezaee N, Mollaei E. The relationship between caring burden and coping strategies in hemodialysis patients caregivers. J Urmia Nurs Midwifery Faculty.2012; 10(4):533–9.
  2. Warady BA. Peritoneal dialysis and the pediatric patient. Perit Dial Int. 2012 Jul-Aug;32(4):393-4. doi: 10.3747/pdi.2012.00168. PMID: 22859838; PMCID: PMC3524849.
  3. Neu AM, Sander A, Borzych-Duzalka D, Watson AR, Vallés PG, Ha IS, Patel H, Askenazi D, Balasz-Chmielewska I, Lauronen J, Groothoff JW, Feber J, Schaefer F, Warady BA; IPPN investigators. Comorbidities in chronic pediatric peritoneal dialysis patients: a report of the International Pediatric Peritoneal Dialysis Network. Perit Dial Int. 2012 Jul-Aug;32(4):410-8. doi: 10.3747/pdi.2012.00124. PMID: 22859841; PMCID: PMC3524853.
  4. Levey AS, Eckardt KU, Dorman NM, Christiansen SL, Hoorn EJ, Ingelfinger JR, Inker LA, Levin A, Mehrotra R, Palevsky PM, Perazella MA, Tong A, Allison SJ, Bockenhauer D, Briggs JP, Bromberg JS, Davenport A, Feldman HI, Fouque D, Gansevoort RT, Gill JS, Greene EL, Hemmelgarn BR, Kretzler M, Lambie M, Lane PH, Laycock J, Leventhal SE, Mittelman M, Morrissey P, Ostermann M, Rees L, Ronco P, Schaefer F, St Clair Russell J, Vinck C, Walsh SB, Weiner DE, Cheung M, Jadoul M, Winkelmayer WC. Nomenclature for kidney function and disease: report of a Kidney Disease: Improving Global Outcomes (KDIGO) Consensus Conference. Kidney Int. 2020 Jun;97(6):1117-1129. doi: 10.1016/j.kint.2020.02.010. Epub 2020 Mar 9. PMID: 32409237.
  5. Basiri Moghadam M, Madadkar Dehkordi S, Mohammadpour A, Vaezi AA. Effect of Progressive Muscle Relaxation Technique on Fatigue in Patients Undergoing Hemodialysis. Prev Care Nurs Midwifery J. 2013;3(2):24-32.
  6. Abbasi A, Asayesh H, Rahmani H, Shariati A, Hosseini S, Rouhi G. The burden on caregivers from hemodialysis patients and related factors. J Res Develop Nursing Midwifery. 2011; 8(1): 2633.CONACyT2016:82.
  7. Abu-Aisha H, Elamin S. Peritoneal dialysis in Africa. Perit Dial Int. 2010 Jan-Feb;30(1):23-8. doi: 10.3747/pdi.2008.00226. PMID: 20056975.
  8. Sinnakirouchenan R, Holley JL. Peritoneal dialysis versus hemodialysis: risks, benefits, and access issues. Adv Chronic Kidney Dis. 2011 Nov;18(6):428-32. doi: 10.1053/j.ackd.2011.09.001. PMID: 22098661.
  9. Luxardo R, Kramer A, González-Bedat MC, Massy ZA, Jager KJ, Rosa-Diez G, Noordzij M; collaborators. The epidemiology of renal replacement therapy in two different parts of the world: the Latin American Dialysis and Transplant Registry versus the European Renal Association-European Dialysis and Transplant Association Registry. Rev Panam Salud Publica. 2018 Sep 7;42:e87. doi: 10.26633/RPSP.2018.87. PMID: 31093115; PMCID: PMC6386019.
  10. Moghadasian S, Sahebi Hagh MH, Aghaallah Hokmabadi L. Lifestyle of hemodialysis patients in comparison with outpatients. J Caring Sci. 2012 May 27;1(2):101-7. doi: 10.5681/jcs.2012.015. PMID: 25276683; PMCID: PMC4161069.
  11. Grapsa E, Gerogianni G. Caregivers of Patients on Haemodialysis. In: Mollaoğlu M, editor. Caregiving and Home Care. Intech Open. 2017; 75-84.
  12. Gilbertson EL, Krishnasamy R, Foote C, Kennard AL, Jardine MJ, Gray NA. Burden of Care and Quality of Life Among Caregivers for Adults Receiving Maintenance Dialysis: A Systematic Review. Am J Kidney Dis. 2019 Mar;73(3):332-343. doi: 10.1053/j.ajkd.2018.09.006. Epub 2018 Nov 16. PMID: 30454885.
  13. Barnieh L, King-Shier K, Hemmelgarn B, Laupacis A, Manns L, Manns B. Views of Canadian patients on or nearing dialysis and their caregivers: a thematic analysis. Can J Kidney Health Dis. 2014 Apr 7;1:4. doi: 10.1186/2054-3581-1-4. PMID: 25780599; PMCID: PMC4346298.
  14. Figueiredo AE, Bernardini J, Bowes E, Hiramatsu M, Price V, Su C, Walker R, Brunier G. A Syllabus for Teaching Peritoneal Dialysis to Patients and Caregivers. Perit Dial Int. 2016 11-12;36(6):592-605. doi: 10.3747/pdi.2015.00277. Epub 2016 Feb 25. PMID: 26917664; PMCID: PMC5174866.
  15. Alnazly EK. Burden and coping strategies among Jordanian caregivers of patients undergoing hemodialysis. Hemodial Int. 2016 Jan;20(1):84-93. doi: 10.1111/hdi.12318. Epub 2015 May 21. PMID: 25998798.
  16. Suri RS, Larive B, Hall Y, Kimmel PL, Kliger AS, Levin N, Kurella Tamura M, Chertow GM; Frequent Hemodialysis Network (FHN) Trial Group. Effects of frequent hemodialysis on perceived caregiver burden in the Frequent Hemodialysis Network trials. Clin J Am Soc Nephrol. 2014 May;9(5):936-42. doi: 10.2215/CJN.07170713. Epub 2014 Apr 10. PMID: 24721892; PMCID: PMC4011443.
  17. Alnazly E. Predictors of the burden on family carers of patients on haemodialysis in Jordan. East Mediterr Health J. 2020 May 21;26(5):565-572. doi: 10.26719/emhj.19.097. PMID: 32538450.
  18. Kang A, Yu Z, Foo M, Chan CM, Griva K. Evaluating Burden and Quality of Life among Caregivers of Patients Receiving Peritoneal Dialysis. Perit Dial Int. 2019 Mar-Apr;39(2):176-180. doi: 10.3747/pdi.2018.00049. PMID: 30858285.
  19. Patel R, Wong C. Illness-related parental stress and quality of life in children with kidney diseases. Pediatr Nephrol. 2023. https://doi.org/10.1007/s00467023-06041-6.
  20. Beaudoin W, Moore H, Bliss L, Souster J, Mehta V. Prevalence of posttraumatic stress disorder in caregivers of pediatric neurosurgical patients. Childs Nerv Syst. 2020; 35:1575–83. doi: 10.1007/s00381-020-04938-3
  21. Toledano-Toledano F, Luna D. The psychosocial profile of family caregivers of children with chronic diseases: a cross-sectional study. Biopsychosoc Med. 2020 Oct 22;14:29. doi: 10.1186/s13030-020-00201-y. PMID: 33110443; PMCID: PMC7583305.
  22. Pars H, Soyer Ö, Şekerel BE. The experiences, perceptions and challenges of mothers managing asthma in their children: a qualitative study. Turk J Pediatr. 2020;62(5):734-745. doi: 10.24953/turkjped.2020.05.004. PMID: 33108075.
  23. Cousino MK, Hazen RA. Parenting stress among caregivers of children with chronic illness: a systematic review. J Pediatr Psychol. 2013 Sep;38(8):809-28. doi: 10.1093/jpepsy/jst049. Epub 2013 Jul 10. PMID: 23843630.
  24. Hock-Long LE. Pediatric home ventilator care: family caregivers’ perspectives [dissertation]. University of Pennsylvania, Philadelphia, Pennsylvania, United States. 1997. https://repository.upenn.edu/ dissertations/AAI9814857
  25. Affinito J, Paterson W. Recognizing burden in unpaid caregivers of ESRD patients. University of New Jersey, Wayne, New Jersey, USA. NKF, spring clinical meetings abstracts. 2017.
  26. Kubiak N, Fehrenbach C, Prüfe J, Thumfart J. Do We Need Palliative Care in Pediatric Nephrology? Patients’ and Caregivers’ Disease Experience. Children. 2023; 10(2):324. https://doi.org/10.3390/children10020324
  27. Srinath S, Jacob P, Sharma E, Gautam A. Clinical Practice Guidelines for Assessment of Children and Adolescents. Indian J Psychiatry. 2019 Jan;61(Suppl 2):158-175. doi: 10.4103/psychiatry.IndianJPsychiatry_580_18. PMID: 30745694; PMCID: PMC6345125.
  28. Bhide A, Chakraborty K. General Principles for Psychotherapeutic Interventions in Children and Adolescents. Indian J Psychiatry. 2020 Jan;62(Suppl 2):S299-S318. doi: 10.4103/psychiatry.IndianJPsychiatry_811_19. Epub 2020 Jan 17. PMID: 32055072; PMCID: PMC7001347.
  29. Abd El-Azem DI, Fouad NA, Seif El-Nasr EM. Quality of life among family caregivers of patients undergoing hemodialysis. Med. J. Cairo Univ. 2018; 86(7): 41374144.
  30. Alnjadat M. Predicting factors affecting the Quality of Life among Malaysian caregivers of cancer patients. Journal of Medicine and Medical Sciences. 2017; 5 (6): 2948.
  31. Mahmoud DA, Saad A, Abdelhamid YH, El Hawary Y. Depression and psychosocial burden among caregivers of children with chronic kidney disease. Middle East Current Psychiatry 2021; 28:12. https://doi.org/10.1186/s43045-021-00092-x
  32. Alvarez-Ude F, Valdés C, Estébanez C, Rebollo P; FAMIDIAL Study Group. Health-related quality of life of family caregivers of dialysis patients. J Nephrol. 2004 Nov-Dec;17(6):841-50. PMID: 15593060.
  33. Zhao R, Gu Y, Shen X, Mai X, Zhou C, Zhang Y, Zhai Y, Shen Q, Xu H, Zhou Q. Money matters: a multicenter cross-sectional study of depressive symptoms among the caregivers of children on peritoneal dialysis in Mainland China. BMC Nephrol. 2020 Nov 10;21(1):472. doi: 10.1186/s12882-020-02147-3. PMID: 33172416; PMCID: PMC7653820.
  34. Sari D, Allenidekaniab, Afiyanti Y. Family experience in treating children with chronic renal failure undergoing hemodialysis therapy. Enferm Clin. 2018; 28(Supl 1 Part B):321-324
  35. Opoku-Boateng YN, Kretchy IA, Aryeetey GC, Dwomoh D, Decker S, Agyemang SA, Tozan Y, Aikins M, Nonvignon J. Economic cost and quality of life of family caregivers of schizophrenic patients attending psychiatric hospitals in Ghana. BMC Health Serv Res. 2017 Dec 4;17(Suppl 2):697. doi: 10.1186/s12913-017-2642-0. PMID: 29219074; PMCID: PMC5773918.
  36. Amendola F, Oliveira MA, Alvarenga MR. Influência do apoio social na qualidade de vida do cuidador familiar de pessoas com dependência [Influence of social support on the quality of life of family caregivers while caring for people with dependence]. Rev Esc Enferm USP. 2011 Aug;45(4):884-9. Portuguese. doi: 10.1590/s0080-62342011000400013. PMID: 21876888.
  37. Winahyu K, Hemchayat M, Charoensuk S. Factors affecting the quality of life among family caregivers of patients with schizophrenia in Indonesia. Journal of Health Research. 2015; 29 (1): 77-82. tci-thaijo.org/index.php/jhealthres/ article/view/ 79895.
  38. Vanz AP, Félix TM, da Rocha NS, Schwartz IV. Quality of life in caregivers of children and adolescents with Osteogenesis Imperfecta. Health and Quality of Life Outcomes. 2015; 13:41. Doi: 10.1186/s12955-015-0226-4.
  39. Ajitpal G, Amandeep S, Prithpal M, Ashwani G, Navtej S, Prem K. Assessment of the quality of life of caregivers of patients suffering from chronic kidney disease. Bantao. 2011; 9. 31-35.
  40. Monárrez-Espino J, Delgado-Valles JA, Ramírez-García G. Quality of life in primary caregivers of patients in peritoneal dialysis and hemodialysis. J Bras Nefrol. 2021 Oct-Dec;43(4):486-494. doi: 10.1590/2175-8239-JBN-2020-0229. PMID: 34096964; PMCID: PMC8940119.


Similar Articles

Recently Viewed

Read More

Most Viewed

Read More

Help ?