Clinical and Experimental Pediatrics

The Korean Pediatric Society (대한소아청소년과학회)
권호 표지
DOI QR코드

DOI QR Code

Psychological aspects in children and parents of children with chronic kidney disease and their families

  • Aier, Alemsungla (Department of Psychiatry, St. John's Medical College) ;
  • Pais, Priya (Department of Paediatric Nephrology, St. John's Medical College) ;
  • Raman, Vijaya (Department of Psychiatry, St. John's Medical College)
  • Received : 2021.07.21
  • Accepted : 2021.10.13
  • Published : 2022.05.15
Download PDF
⟨ Previous Next ⟩

Abstract

Pediatric chronic kidney disease (CKD) is a chronic illness that affects the overall quality of life of patients during childhood. This article highlights the psychological and social burden of CKD in patients and their families. Patients with CKD and their families require comprehensive treatment for psychosocial problems. Therefore, it is crucial for pediatricians to screen for these issues and refer patients and their families for therapy. Tools that are short, easy to administer, and easy to score, such as the Pediatric Quality of Life Inventory or the Childhood Depression Inventory, can be utilized during routine clinical appointments. Reducing the negative impact of CKD on the family will improve the well-being and coping skills of patients and their families.

Keywords

References

  1. Aoto H, Nakatani H, Kanayama S, Okada SI, Fukada M, Hanaki K. Qualitative analysis of the psychosocial adaptation process in children with chronic kidney disease: toward effective support during transition from childhood to adulthood. Yonago Acta Med 2018;61:166-74. https://doi.org/10.33160/yam.2018.09.004
  2. Watson AR. Psychosocial support for children and families requiring renal replacement therapy. Pediatr Nephrol 2014;29:1169-74. https://doi.org/10.1007/s00467-013-2582-9
  3. Lavigne JV, Faier-Routman J. Psychological adjustment to pediatric physical disorders: a meta-analytic review. J Pediatr Psychol 1992;17:133-57. https://doi.org/10.1093/jpepsy/17.2.133
  4. Pinquart M, Shen Y. Behavior problems in children and adolescents with chronic physical illness: a meta-analysis. J Pediatr Psychol 2011;36:1003-16. https://doi.org/10.1093/jpepsy/jsr042
  5. Levey AS, Eckardt KU, Dorman NM, Christiansen SL, Hoorn EJ, Ingelfinger JR, et al. Nomenclature for kidney function and disease: report of a Kidney Disease: Improving Global Outcomes (KDIGO) Consensus Conference. Kidney Int 2020;97:1117-29. https://doi.org/10.1016/j.kint.2020.02.010
  6. Warady BA, Chadha V. Chronic kidney disease in children: the global perspective. Pediatr Nephrol 2007;22:1999-2009. https://doi.org/10.1007/s00467-006-0410-1
  7. Harambat J, van Stralen KJ, Kim JJ, Tizard EJ. Epidemiology of chronic kidney disease in children. Pediatr Nephrol 2012;27:363-73. Erratum in: Pediatr Nephrol 2012;27:507. https://doi.org/10.1007/s00467-011-1939-1
  8. Vivante A, Hildebrandt F. Exploring the genetic basis of early-onset chronic kidney disease. Nat Rev Nephrol 2016;12:133-46. https://doi.org/10.1038/nrneph.2015.205
  9. Becherucci F, Roperto RM, Materassi M, Romagnani P. Chronic kidney disease in children. Clin Kidney J 2016;9:583-91. https://doi.org/10.1093/ckj/sfw047
  10. 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. https://doi.org/10.1056/NEJMoa031643
  11. Mitsnefes MM, Laskin BL, Dahhou M, Zhang X, Foster BJ. Mortality risk among children initially treated with dialysis for end-stage kidney disease, 1990-2010. JAMA 2013;309:1921-9. https://doi.org/10.1001/jama.2013.4208
  12. Greenbaum LA, Warady BA, Furth SL. Current advances in chronic kidney disease in children: growth, cardiovascular, and neurocognitive risk factors. Semin Nephrol 2009;29:425-34. https://doi.org/10.1016/j.semnephrol.2009.03.017
  13. Groothoff JW, Grootenhuis MA, Offringa M, Stronks K, Hutten GJ, Heymans HS. Social consequences in adult life of end-stage renal disease in childhood. J Pediatr 2005;146:512-7. https://doi.org/10.1016/j.jpeds.2004.10.060
  14. Lewis H, Marks SD. Differences between paediatric and adult presentation of ESKD in attainment of adult social goals. Pediatr Nephrol 2014;29:2379-85. https://doi.org/10.1007/s00467-014-2864-x
  15. Manti P, Giannakopoulos G, Giouroukou E, Georgaki-Angelaki H, Stefanidis CJ, Mitsioni A, et al. Psychosocial and cognitive function in children with nephrotic syndrome: association with disease and treatment variables. Biopsychosoc Med 2013;7:10. https://doi.org/10.1186/1751-0759-7-10
  16. Bignall ON 2nd, Goldstein SL. Childhood CKD affects the entire family. Am J Kidney Dis 2015;65:367-8. https://doi.org/10.1053/j.ajkd.2014.11.013
  17. 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. https://doi.org/10.1542/peds.2006-3470
  18. Alderfer MA, Labay LE, Kazak AE. Brief report: does posttraumatic stress apply to siblings of childhood cancer survivors? J Pediatr Psychol 2003;28:281-6. https://doi.org/10.1093/jpepsy/jsg016
  19. Redshaw S, Wilson V. Sibling involvement in childhood chronic heart disease through a bead program. J Child Health Care 2012;16:53-61. https://doi.org/10.1177/1367493511423649
  20. Fukunishi I, Honda M. School adjustment of children with end-stage renal disease. Pediatr Nephrol 1995;9:553-7. https://doi.org/10.1007/BF00860928
  21. Fielding D, Brownbridge G. Factors related to psychosocial adjustment in children with end-stage renal failure. Pediatr Nephrol 1999;13:766-70. https://doi.org/10.1007/s004670050695
  22. Madden SJ, Ledermann SE, Guerrero-Blanco M, Bruce M, Trompeter RS. Cognitive and psychosocial outcome of infants dialysed in infancy. Child Care Health Dev 2003;29:55-61. https://doi.org/10.1046/j.1365-2214.2003.00311.x
  23. Bakr A, Amr M, Sarhan A, Hammad A, Ragab M, El-Refaey A, et al. Psychiatric disorders in children with chronic renal failure. Pediatr Nephrol 2007;22:128-31. https://doi.org/10.1007/s00467-006-0298-9
  24. Duquette PJ, Hooper SR, Wetherington CE, Icard PF, Gipson DS. Brief report: intellectual and academic functioning in pediatric chronic kidney disease. J Pediatr Psychol 2007;32:1011-7. https://doi.org/10.1093/jpepsy/jsm036
  25. Gerson AC, Wentz A, Abraham AG, Mendley SR, Hooper SR, Butler RW, et al. Health-related quality of life of children with mild to moderate chronic kidney disease. Pediatrics 2010;125:e349-57. https://doi.org/10.1542/peds.2009-0085
  26. Lande MB, Gerson AC, Hooper SR, Cox C, Matheson M, Mendley SR, et al. Casual blood pressure and neurocognitive function in children with chronic kidney disease: a report of the children with chronic kidney disease cohort study. Clin J Am Soc Nephrol 2011;6:1831-7. https://doi.org/10.2215/CJN.00810111
  27. Wiedebusch S, Konrad M, Foppe H, Reichwald-Klugger E, Schaefer F, Schreiber V, et al. Health-related quality of life, psychosocial strains, and coping in parents of children with chronic renal failure. Pediatr Nephrol 2010;25:1477-85. https://doi.org/10.1007/s00467-010-1540-z
  28. Tong A, Lowe A, Sainsbury P, Craig JC. Parental perspectives on caring for a child with chronic kidney disease: an in-depth interview study. Child Care Health Dev 2010;36:549-57. https://doi.org/10.1111/j.1365-2214.2010.01067.x
  29. Kilis-Pstrusinska K, Medynska A, Adamczyk P, Balasz-Chmielewska I, Grenda R, Kluska-Jozwiak A, et al. Disease-related social situation in family of children with chronic kidney disease--parents' assessment. A multicentre study. Ann Agric Environ Med 2014;21:876-81. https://doi.org/10.5604/12321966.1129951
  30. Geense WW, van Gaal BGI, Knoll JL, Cornelissen EAM, van Achterberg T. The support needs of parents having a child with a chronic kidney disease: a focus group study. Child Care Health Dev 2017;43:831-8. https://doi.org/10.1111/cch.12476
  31. Nicholas DB. Examining the roles and experiences of fathers of children with chronic kidney disease. Glob Qual Nurs Res 2017;4:2333393617705035.
  32. Batte S, Watson AR, Amess K. The effects of chronic renal failure on siblings. Pediatr Nephrol 2006;21:246-50. https://doi.org/10.1007/s00467-005-2064-9
  33. Velasco J, Ferraris V, Eymann A, Coccia PA, Ghezzi LR, Sanchez MC, et al. Quality of life among siblings of patients with chronic conditions. Arch Argent Pediatr 2020;118:252-7.
  34. Agerskov H, Thiesson HC, Pedersen BD. The significance of relationships and dynamics in families with a child with end-stage kidney disease: a qualitative study. J Clin Nurs 2020;29:987-95. https://doi.org/10.1111/jocn.15170
  35. Drotar D. Psychological interventions for children with chronic physical illness and their families. In: Russ SW, Ollendick TH, editors. Handbook of psychotherapies with children and families. Boston: Springer, 1999:447-61.
  36. Bronfenbrenner U. The ecology of human development: experiments by nature and design. Cambridge (MA): Harvard University Press, 1979.
  37. Kazak A, Nachman G. Family research on childhood chronic illness: pediatric oncology as an example. J Family Psychol 1991;4:462-83. https://doi.org/10.1037/0893-3200.4.4.462
  38. Srinath S, Jacob P, Sharma E, Gautam A. Clinical practice guidelines for assessment of children and adolescents. Indian J Psychiatry 2019;61:158-75. https://doi.org/10.4103/psychiatry.indianjpsychiatry_580_18
  39. Bhide A, Chakraborty K. General principles for psychotherapeutic interventions in children and adolescents. Indian J Psychiatry 2020;62:S299-318.
  40. Achenbach TM, Rescorla LA. Manual for the ASEBA school-age forms & profiles: an integrated system of multi-informant assessment. Burlington (VT): University of Vermont, Research Center for Children, Youth & Families, 2001.
  41. Goodman R. The Strengths and Difficulties Questionnaire: a research note. J Child Psychol Psychiatry 1997;38:581-6. https://doi.org/10.1111/j.1469-7610.1997.tb01545.x
  42. Rosenberg M. Society and the adolescent self-image. Princeton (NJ): Princeton University Press, 1965.
  43. Battle J. Culture-free self-esteem inventories: examiner's manual. 3rd ed. Austin (TX): Pro-Ed, 2002.
  44. Kovacs M. Children's depression inventory 2nd edition (CDI 2): technical manual. North Tonawanda (NY): Multi-Health Systems, 2011.
  45. Birmaher B, Brent DA, Chiappetta L, Bridge J, Monga S, Baugher M. Psychometric properties of the Screen for Child Anxiety Related Emotional Disorders (SCARED): a replication study. J Am Acad Child Adolesc Psychiatry 1999;38:1230-6. https://doi.org/10.1097/00004583-199910000-00011
  46. Speilberger CD. Manual for the state-trait anxiety inventory for children. Palo Alto (CA): Consulting Psychologists' Press, 1973.
  47. Varni JW, Burwinkle TM, Seid M, Skarr D. The PedsQL 4.0 as a pediatric population health measure: feasibility, reliability, and validity. Ambul Pediatr 2003;3:329-41. https://doi.org/10.1367/1539-4409(2003)003<0329:TPAAPP>2.0.CO;2
  48. Goldstein SL, Graham N, Burwinkle T, Warady B, Farrah R, Varni JW. Health-related quality of life in pediatric patients with ESRD. Pediatr Nephrol 2006;21:846-50. https://doi.org/10.1007/s00467-006-0081-y
  49. Goldberg D. Use of the general health questionnaire in clinical work. Br Med J (Clin Res Ed) 1986;293:1188-9. https://doi.org/10.1136/bmj.293.6556.1188
  50. Zarit SH, Zarit JM. The memory and behavior problems checklist: 1987R and the burden interview (technical report). University Park (PA): Pennsylvania State University, 1987.
  51. Moos RH, Moos BS. Family environment scale manual. 3rd ed. Palo Alto (CA): Consulting Psychologists Press,1994.
  52. Barlow JH, Ellard DR. Psycho-educational interventions for children with chronic disease, parents and siblings: an overview of the research evidence base. Child Care Health Dev 2004;30:637-45. https://doi.org/10.1111/j.1365-2214.2004.00474.x
  53. Pielech M, Sieberg CB, Simons LE. Connecting parents of children with chronic pain through art therapy. Clin Pract Pediatr Psychol 2013;1:214-26. https://doi.org/10.1037/cpp0000026
  54. Freeman M. Therapeutic use of storytelling for older children who are critically ill. Child Health Care 1991;20:208-15. https://doi.org/10.1207/s15326888chc2004_3
  55. Treurnicht Naylor K, Kingsnorth S, Lamont A, McKeever P, Macarthur C. The effectiveness of music in pediatric healthcare: a systematic review of randomized controlled trials. Evid Based Complement Alternat Med 2011;2011:464759.
  56. Gariepy N, Howe N. The therapeutic power of play: examining the play of young children with leukaemia. Child Care Health Dev 2003;29:523-37. https://doi.org/10.1046/j.1365-2214.2003.00372.x
  57. VanLeeuwen JJ, Matthews DE. Comprehensive mental health care in a pediatric dialysis-transplantation program. Can Med Assoc J 1975;113:959-62.
  58. Warady BA. Therapeutic camping for children with end-stage renal disease. Pediatr Nephrol 1994;8:387-90. https://doi.org/10.1007/BF00866373
  59. Meade MA, Creer TL, Mahan JD. A self-management program for adolescents and children with renal transplantation. J Clin Psycho Med Settings 2003;10:165-71. https://doi.org/10.1023/A:1025406711313
  60. Hashim B, Vadnais M, Miller A. Improving adherence in adolescent chronic kidney disease: a dialectical behavior therapy (DBT) feasibility trial. Clin Pract Pediatr Psychol 2013;1:369-79. https://doi.org/10.1037/cpp0000024