Abstract
Objectives
To evaluate the social consequences of dialysis on children and their parents.
Methods
From January through June 2012 short structured interviews with parents or caregivers of children on peritoneal dialysis (PD) or hemodialysis (HD) who were followed up at King Abdulaziz University Hospital, King Faisal Specialty Hospital and Research Center, or the Kidney Center at King Fahad Hospital were conducted. Data were analyzed using the Statistical Package for the Social Sciences.
Results
Thirty six children (22 boys and 16 girls) and their families were included. The mean (SD) age of the children was 11.5 ± 6.87 y, and the mean (SD) duration of dialysis was 28 ± 11.32 mo. Only one third of the families had the opportunity to choose the modality of dialysis. Both modalities of dialysis had a negative effect on fathers’ jobs in over 50 % of the cases. Similarly, both modalities of treatment had a considerable impact on the quality of care provided by the mothers to other family members. There was no difference between the two modalities on the frequency of admissions.
Conclusions
Both PD and HD had a negative impact on fathers’ jobs and on the level of care provided by mothers to the rest of the family.
This is a preview of subscription content, log in via an institution to check access.
Similar content being viewed by others
References
McDonald SP, Craig JC; Australian and New Zealand Paediatric Nephrology Association. Long-term survival of children with end-stage renal disease. N Engl J Med. 2004;350:2654–62.
Groothoff JW, Gruppen MP, Offringa M, Hutten J, Lilien MR, Van De Kar NJ, et al. Mortality and causes of death of end-stage renal disease in children: A Dutch cohort study. Kidney Int. 2002;61:621–9.
Reiss J. Managing chronic diseases: Care of children with chronic illness teaches some lessons. BMJ. 2005;330:963–4. discussion 964–5.
Gerson AC, Furth SL, Neu AM, Fivush BA. Assessing associations between medication adherence and potentially modifiable psychosocial variables in pediatric kidney transplant recipients and their families. Pediatr Transplant. 2004;8:543–50.
Manificat S, Dazord A, Cochat P, Morin D, Plainguet F, Debray D. Quality of life of children and adolescents after kidney or liver transplantation: Child, parents and caregiver’s point of view. Pediatr Transplant. 2003;7:228–35.
Eiser C. Psychological effects of chronic disease. J Child Psychol Psychiatry. 1990;31:85–98.
Varni JW, Limbers CA. The pediatric quality of life inventory: Measuring pediatric health-related quality of life from the perspective of children and their parents. Pediatr Clin North Am. 2009;56:843–63.
Goldstein SL, Graham N, Warady BA, Seikaly M, McDonald R, Burwinkle TM, et al. 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). Am J Kidney Dis. 2008;51:285–97.
Park KS, Cho MH, Ha IS, Kang HG, Cheong HI, Park YS, et al. Validity and reliability of the Korean version of the pediatric quality of life ESRD module. Health Qual Life Outcomes. 2012;10:59.
Cimete G. Stress factors and coping strategies of parents with children treated by hemodialysis: A qualitative study. J Pediatr Nurs. 2002;17:297–306.
Kärrfelt HM, Berg UB, Lindblad FI. Renal transplantation in children: Psychological and donation-related aspects from the parental perspective. Pediatr Transplant. 2000;4:305–12.
Baines LS, Beattie TJ, Murphy AV, Jindal RM. Relationship between donors and pediatric recipients of kidney transplants: A psychosocial study. Transplant Proc. 2001;33:1897–9.
Korevaar JC, Feith GW, Dekker FW, van Manen JG, Boeschoten EW, Bossuyt PM, et al. Effect of starting with hemodialysis compared with peritoneal dialysis in patients new on dialysis treatment: A randomized controlled trial. Kidney Int. 2003;64:2222–8.
Peritoneal dialysis in the treatment of stage 5 chronic kidney disease. National Institute for Healthy and Clinical Excellence. http://www.nice.org.uk/guidance/CG125. Accessed December 11, 2012.
Mason J, Khunti K, Stone M, Farooqi A, Carr S. Educational interventions in kidney disease care: A systematic review of randomized trials. Am J Kidney Dis. 2008;51:933–51.
Friedman AL. The broader burden of end-stage renal disease on children and their families. Kidney Int. 2006;70:1893–4.
Tong A, Lowe A, Sainsbury P, Craig JC. Experiences of parents who have children with chronic kidney disease: A systematic review of qualitative studies. Pediatrics. 2008;121:349–60.
de Paula ES, Nascimento LC, Rocha SM. The influence of social support on strengthening families of children with chronic renal failure. Rev Lat Am Enfermagem. 2008;16:692–9.
SCOT Data (Saudi Center of Organ Transplantation). Organ transplantation in Saudi Arabia. Saudi J Kidney Dis Transpl. 2010;21:1179–87.
Albar M. Organ transplantation: A Sunni Islamic perspective. Saudi J Kidney Dis Transpl. 2012;23:817–22.
Acknowledgments
The authors acknowledge with thanks Deanship of Scientific Research for their technical and financial support. The authors also thank the Clinical Research Unit at King Abdulaziz University Hospital for their assistance with the statistics and writing up of this paper.
Conflict of Interest
None.
Role of Funding Source
This project was funded by the Deanship of Scientific Research (DSR), King Abdulaziz University, Jeddah under the grand number (432/003/d) for pediatric nephrology research.
Author information
Authors and Affiliations
Corresponding author
Rights and permissions
About this article
Cite this article
Kari, J.A., Alzahrany, M., El-Deek, B. et al. Social Impact of Dialysis on Children and Their Families. Indian J Pediatr 81, 1020–1026 (2014). https://doi.org/10.1007/s12098-013-1236-z
Received:
Accepted:
Published:
Issue Date:
DOI: https://doi.org/10.1007/s12098-013-1236-z