Abstract
A large body of literature has emerged over the past three decades examining the psychosocial functioning of children and adolescents undergoing dialysis. Advances in diagnosis, treatment, and disease outcomes have been associated with changes in psychosocial adjustment as children live longer with renal disease. Dialysis can significantly impact all domains of a child’s life, including their emotional, behavioral, and social functioning. Studies examining adult outcomes (i.e., studies of adults who received dialysis in childhood and/or adolescence) suggest difficulties originating in childhood are maintained or even escalate as this population enters adulthood [1–4]. Therefore, understanding how to recognize and address psychosocial issues as early as possible is a necessary component of comprehensive patient care.
Access this chapter
Tax calculation will be finalised at checkout
Purchases are for personal use only
References
Groothoff JW, Grootenhuis MA, Offringa M, Stronks K, Hutten GJ, Heymans HSA. Social consequences in adult life of end-stage renal disease in childhood. J Pediatr. 2005;146(4):512–7.
Morton MJS, Reynolds JM, Garralda ME, Postlethwaite RJ, Goh D. Psychiatric adjustment in end-stage renal disease: a follow up study of former paediatric patients. J Psychosom Res. 1994;38(4): 293–303.
Reynolds JM, Morton MJ, Garralda ME, Postlethwaite RJ, Goh D. Psychosocial adjustment of adult survivors of a paediatric dialysis and transplant programme. Arch Dis Child. 1993;68(1):104–10.
Roscoe JM, Smith LF, Williams EA, et al. Medical and social outcome in adolescents with end-stage renal failure. Kidney Int. 1991;40(5):948–53.
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(6):846–50.
Loghman-Adham M. Medication noncompliance in patients with chronic disease: issues in dialysis and renal transplantation. Am J Manag Care. 2003;9(2): 155–71.
Rosenkranz J, Bonzel K-E, Bulla M, et al. Psychosocial adaptation of children and adolescents with chronic renal failure. Pediatr Nephrol. 1992;6(5):459–63.
Simoni JM, Asarnow JR, Munford PR, Koprowski CM, Belin TR, Salusky IB. Psychological distress and treatment adherence among children on dialysis. Pediatr Nephrol. 1997;11(5):604–6.
Bakr A, Amr M, Sarhan A, et al. Psychiatric disorders in children with chronic renal failure. Pediatr Nephrol. 2007;22(1):128–31.
Shulman R, Price JD, Spinelli J. Biopsychosocial aspects of long-term survival on end-stage renal failure therapy. Psychol Med. 1989;19(4):945–54.
Fukunishi I, Kudo H. Psychiatric problems of pediatric end-stage renal failure. Gen Hosp Psychiatry. 1995;17(1):32–6.
Amr M, Bakr A, El Gilany AH, Hammad A, El-Refaey A, El-Mougy A. Multi-method assessment of behavior adjustment in children with chronic kidney disease. Pediatr Nephrol. 2009;24(2):341–7.
Brownbridge G, Fielding DM. Psychosocial adjustment and adherence to dialysis treatment regimes. Pediatr Nephrol. 1994;8(6):744–9.
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(1):55–61.
Brem AS, Brem FS, McGrath M, Spirito A. Psychosocial characteristics and coping skills in children maintained on chronic dialysis. Pediatr Nephrol. 1988;2(4):460–5.
Brownbridge G, Fielding DM. Psychosocial adjustment to end-stage renal failure: comparing haemodialysis, continuous ambulatory peritoneal dialysis and transplantation. Pediatr Nephrol. 1991;5(5):612–6.
Garralda ME, Jameson RA, Reynolds JM, Postlethwaite RJ. Psychiatric adjustment in children with chronic renal failure. J Child Psychol Psychiatry. 1988;29:79–90.
Fukunishi I, Honda M. School adjustment of children with end-stage renal disease. Pediatr Nephrol. 1995; 9(5):553–7.
Reinhart JB, Kemph JP. Renal transplantation for children: another view. JAMA. 1988;260(22):3327–8.
Kazak AE, Simms S, Rourke MT. Family systems practice in pediatric psychology. Pediatr Psychol. 2002;27(2):133–43.
Snethen JA, Broome ME, Bartels J, Warady BA. Adolescents’ perception of living with end stage renal disease. Pediatr Nurs. 2001;27(2):159.
Fielding D, Moore B, Dewey M, Ashley P, McKendrick T, Pinkerton P. Children with end-stage renal failure: psychological effects on patients, siblings and parents. J Psychosom Res. 1985;29(5):457–65.
Cimete G. Stress factors and coping strategies of parents with children treated by hemodialysis: a qualitative study. J Pediatr Nurs. 2002;17(4):297–306.
Tsai TC, Liu SI, Tsai JD, Chou LH. Psychosocial effects on caregivers for children on chronic peritoneal dialysis. Kidney Int. 2006;70(11):1983–7.
Reynolds JM, Garralda ME, Jameson RA, Postlethwaite RJ. How parents and families cope with chronic renal failure. Arch Dis Child. 1988;63(7): 821–6.
Haffner JC, Schurman SJ. The technology dependent child. Pediatr Clin North Am. 2001;48(3):751–64.
Heaton J, Noyes J, Sloper P, Shah R. Families’ experiences of caring for technology-dependent children: a temporal perspective. Health Soc Care Community. 2005;13(5):441–50.
Soliday E, Kool E, Lande MB. Family environment, child behavior, and medical indicators in children with kidney disease. Child Psychiatry Hum Dev. 2001;31(4):279–95.
Batte S, Watson A, Amess K. The effects of chronic renal failure on siblings. Pediatr Nephrol. 2006;21(2):246–50.
Quittner AL, Opipari LC. Differential treatment of siblings: interview and diary analyses comparing two family contexts. Child Dev. 1994;65(3):800–14.
Birmaher B, Ryan ND, Williamson DE, et al. Childhood and adolescent depression: a review of the past 10 years (Part I). Focus. 1996;35:1427–39.
James A, Soler A, Weatherall R. Cognitive behavioural therapy for anxiety disorders in children and adolescents. Cochrane Database Syst Rev. 2005;4: CD004690.
Weersing VR, Brent DA. Cognitive behavioral therapy for depression in youth. Child Adolesc Psychiatr Clin N Am. 2006;15(4):939–57.
Wysocki T, Harris MA, Buckloh LM, et al. Effects of behavioral family systems therapy for diabetes on adolescents’ family relationships, treatment adherence, and metabolic control. J Pediatr Psychol. 2006;31(9):928–38.
Rapoff MA. Adherence to pediatric medical regimens. New York: Springer; 1999.
Kennard BD, Stewart SM, Olvera R, et al. Nonadherence in adolescent oncology patients: preliminary data on psychological risk factors and relationships to outcome. J Clin Psychol Med Settings. 2004;11(1):31–9.
Fredericks EM, Magee JC, Opipari-Arrigan L, Shieck V, Well A, Lopez MJ. Adherence and health-related quality of life in adolescent liver transplant recipients. Pediatr Transplant. 2008;12(3):289–99.
Ekberg H, Kyllonen L, Madsen S, Grave G, Solbu D, Holdaas H. Clinicians underestimate gastrointestinal symptoms and overestimate quality of life in renal transplant recipients: a multinational survey of nephrologists. Transplantation. 2007;84(8):1052–954.
Cloutier MM, Wakefield DB, Sangeloty-Higgins P, Delaronde S, Hall CB. Asthma guideline use by pediatricians in private practices and asthma morbidity. Pediatrics. 2006;118(5):1880–7.
Lewis CE, Rachelefsky G, Lewis MA, de la Sota A, Kaplan M. A randomized trial of A.C.T. (asthma care training) for kids. Pediatrics. 1984;74(4):478–86.
USGA Office. End-stage renal disease: characteristics of kidney transplant recipients, frequency of transplant failures, and cost to medicare. Washington, DC: United States Government Accountability Office; 2007. p. 1–27.
Dunbar-Jacob J, Mortimer-Stephens MK. Treatment adherence in chronic disease. J Clin Epidemiol. 2001;54(12S1):57–60.
DiMatteo MR, Giordani PJ, Lepper HS, Croghan TW. Patient adherence and medical treatment outcomes: a meta-analysis. Med Care. 2002;40(9):794–811.
Sabaté E. Adherence to long-term therapies: evidence for action. Geneva: World Health Organization; 2003.
Haynes RB, Sackett DL. Compliance with therapeutic regimens. Baltimore: Johns Hopkins University Press; 1976.
Cramer JA, Roy A, Burrell A, et al. Medication compliance and persistence: terminology and definitions. Value Health. 2008;11(1):44.
Rand CS. Patient adherence with COPD therapy. Eur Respir Rev. 2005;14(96):97–101.
Hesse UJ, Roth B, Knuppertz G, Wienand P, von Lilien T. Control of patient compliance in outpatient steroid treatment of nephrologic disease and renal transplant recipients. Transplant Proc. 1990;22(4):1405–6.
Hudson J, Fielding D, Jones S, McKendrick T. Adherence to medical regime and related factors in youngsters on dialysis. Br J Clin Psychol. 1987;26(Pt 1):61–2.
Anderson BJ, Laffel LMB. Behavioral and psychosocial research with school-aged children with type 1 diabetes. Diabetes Spectrum. 1997;10:281–5.
Mellins CA, Brackis-Cott E, Dolezal C, Abrams EJ. The role of psychosocial and family factors in adherence to antiretroviral treatment in human immunodeficiency virus-infected children. Pediatr Infect Dis J. 2004;23(11):1035.
Zindani GN, Streetman DD, Streetman DS, Nasr SZ. Adherence to treatment in children and adolescent patients with cystic fibrosis. J Adolesc Health. 2006;38(1):13–7.
Ferris ME, Gipson DS, Kimmel PL, Eggers PW. Trends in treatment and outcomes of survival of adolescents initiating end-stage renal disease care in the United States of America. Pediatr Nephrol. 2006; 21(7):1020–6.
Greenstein S, Siegal B. Compliance and noncompliance in patients with a functioning renal transplant: a multicenter study. Transplantation. 1998;66(12): 1718–26.
Bawden HN, Acott P, Carter J, et al. Neuropsychological functioning in end-stage renal disease. Br Med J. 2004;89(7):644.
La Greca AM. Issues in adherence with pediatric regimens. J Pediatr Psychol. 1990;15(4):423–36.
Tebbi CK, Cummings KM, Zevon MA, Smith L, Richards M, Mallon J. Compliance of pediatric and adolescent cancer patients. Cancer. 1986;58(5): 1179–84.
Modi AC, Quittner AL. Barriers to treatment adherence for children with cystic fibrosis and asthma: what gets in the way? J Pediatr Psychol. 2006;31(8): 846–58.
McQuaid EL, Kopel SJ, Klein RB, Fritz GK. Medication adherence in pediatric asthma: reasoning, responsibility, and behavior. J Pediatr Psychol. 2003; 28(5):323–33.
Shemesh E, Lurie S, Stuber ML, et al. A pilot study of posttraumatic stress and nonadherence in pediatric liver transplant recipients. Pediatrics. 2000;105(2): e29.
Maikranz JM, Steele RG, Dreyer ML, Stratman AC, Bovaird JA. The relationship of hope and illness-related uncertainty to emotional adjustment and adherence among pediatric renal and liver transplant recipients. J Pediatr Psychol. 2007;32(5):571–81.
Shaw RJ, Palmer L, Blasey C, Sarwal M. A typology of non-adherence in pediatric renal transplant recipients. Pediatr Transplant. 2003;7(6):489–93.
Miller-Johnson S, Emery RE, Marvin RS, Clarke W, Lovinger R, Martin M. Parent-child relationships and the management of insulin-dependent diabetes mellitus. J Consult Clin Psychol. 1994;62(3):603–10.
Walders N, Drotar D, Kercsmar C. The allocation of family responsibility for asthma management tasks in African-American adolescents. J Asthma. 2000;37(1): 89–99.
Allen DA, Tennen H, McGrade BJ, Affleck G, Ratzan S. Parent and child perceptions of the management of juvenile diabetes. J Pediatr Psychol. 1983;8(2): 129–41.
Anderson BJ, Vangsness L, Connell A, Butler D, Goebel-Fabbri A, Laffel LM. Family conflict, adherence, and glycaemic control in youth with short duration type 1 diabetes. Diabet Med. 2002;19(8): 635–42.
Boland EA, Grey M, Mezger J, Tamborlane WV. A summer vacation from diabetes: evidence from a clinical trial. Diabetes Educ. 1999;25(1):31–40.
Kahana SY, Frazier TW, Drotar D. Preliminary quantitative investigation of predictors of treatment nonadherence in pediatric transplantation: a brief report. Pediatr Transplant. 2008;12:656–60.
La Greca AM, Auslander WF, Greco P, Spetter D, Fisher Jr EB, Santiago JV. I get by with a little help from my family and friends: adolescents’ support for diabetes care. J Pediatr Psychol. 1995;20(4):449–76.
Martin S, Elliott-DeSorbo DK, Wolters PL, et al. Patient, caregiver and regimen characteristics associated with adherence to highly active antiretroviral therapy among HIV-infected children and adolescents. Pediatr Infect Dis J. 2007;26(1):61–7.
Dobbels F, Van Damme-Lombaert R, Vanhaecke J, De Geest S. Growing pains: non-adherence with the immunosuppressive regimen in adolescent transplant recipients. Pediatr Transplant. 2005;9(3):381–90.
Ettenger RB, Rosenthal JT, Marik JL, et al. Improved cadaveric renal transplant outcome in children. Pediatr Nephrol. 1991;5(1):137–42.
Jarzembowski T, John E, Panaro F, et al. Impact of non-compliance on outcome after pediatric kidney transplantation: an analysis in racial subgroups. Pediatr Transplant. 2004;8(4):367–71.
Berber I, Tellioglu G, Yigit B, Turkmen F, Titiz MI, Altaca G. Pediatric renal transplantation: clinical analysis of 28 cases. Transplant Proc. 2006;38(2):430–1.
Michelon TF, Piovesan F, Pozza R, et al. Noncompliance as a cause of renal graft loss. Transplant Proc. 2002;34(7):2768–70.
Nevins TE, Kruse L, Skeans MA, Thomas W. The natural history of azathioprine compliance after renal transplantation. Kidney Int Suppl. 2001;60(4):1565–70.
Vidhun JR, Sarwal MM. Corticosteroid avoidance in pediatric renal transplantation. Pediatr Nephrol. 2005;20(3):418–26.
Vlaminck H, Maes B, Evers G, et al. Prospective study on late consequences of subclinical non-compliance with immunosuppressive therapy in renal transplant patients. Am J Transplant. 2004;4(9):1509–13.
Warady BA, Mudge C, Wiser B, Wiser M, Rader B. Transplant allograft loss in the adolescent patient. Adv Ren Replace Ther. 1996;3(2):154–65.
De Geest S, Borgermans L, Gemoets H, et al. Incidence, determinants, and consequences of subclinical noncompliance with immunosuppressive therapy in renal transplant recipients. Transplantation. 1995;59(3):340–7.
Kahana S, Drotar D, Frazier T. Meta-analysis of psychological interventions to promote adherence to treatment in pediatric chronic health conditions. J Pediatr Psychol. 2008;33(6):590–611.
Juergensen PH, Gorban-Brennan N, Finkelstein FO. Compliance with the dialysis regimen in chronic peritoneal dialysis patients: utility of the pro card and impact of patient education. Adv Perit Dial. 2004;20:90–2.
Neri L, Viglino G, Cappelletti A, Gandolfo C, Barbieri S. Compliance in automated peritoneal dialysis. Adv Perit Dial. 2002;18:72–4.
Lee AJ, Kho K, Chia KS et al. Simulating inadequate dialysis and its correction using an individualized patient-derived nomogram. Pediatr Nephrol. 2009;24:1–10.
La Greca AM, Follansbee D, Skyler JS. Developmental and behavioral aspects of diabetes management in youngsters. Child Health Care. 1990;19(3):132.
Spirito A, Kazak AE. Effective and emerging treatments in pediatric psychology. New York: Oxford University Press; 2006.
Author information
Authors and Affiliations
Corresponding author
Editor information
Editors and Affiliations
Rights and permissions
Copyright information
© 2012 Springer Science+Business Media, LLC
About this chapter
Cite this chapter
Pai, A.L.H., Ingerski, L.M. (2012). Psychosocial Adjustment and Adherence of Children and Adolescents on Dialysis. In: Warady, B., Schaefer, F., Alexander, S. (eds) Pediatric Dialysis. Springer, Boston, MA. https://doi.org/10.1007/978-1-4614-0721-8_30
Download citation
DOI: https://doi.org/10.1007/978-1-4614-0721-8_30
Published:
Publisher Name: Springer, Boston, MA
Print ISBN: 978-1-4614-0720-1
Online ISBN: 978-1-4614-0721-8
eBook Packages: MedicineMedicine (R0)