Skip to main content
Top
Published in: Pediatric Nephrology 8/2010

01-08-2010 | Original Article

Health-related quality of life, psychosocial strains, and coping in parents of children with chronic renal failure

Authors: Silvia Wiedebusch, Martin Konrad, Helmut Foppe, Evelyn Reichwald-Klugger, Franz Schaefer, Vera Schreiber, Fritz A. Muthny

Published in: Pediatric Nephrology | Issue 8/2010

Login to get access

Abstract

Health-related quality of life (HRQOL) in parents of children suffering from renal disease is often diminished by the illness burden experienced in daily life and by unfavorable ways of coping. Our aim was to examine the relationship between psychosocial strains perceived by parents, their ways of coping, and HRQOL. In an anonymous cross-sectional study, parents completed a questionnaire concerning psychosocial strains, coping strategies, and HRQOL, as well as sociodemographic and illness parameters. Study participants were recruited in two outpatient dialysis centers. Participating in the study were 195 parents (105 mothers, 90 fathers; age 43 ± 8 years; representing 108 families) of children suffering from renal disease (age 12 ± 5 years). Parents of children with chronic renal failure reported moderate HRQOL with parents of children undergoing dialysis experiencing more limitations in quality of life than parents of children living with a kidney graft and parents of children undergoing conservative treatment. Mothers experienced lower HRQOL and higher psychosocial strains than fathers. HRQOL was predicted by the coping strategies “focusing on child” (β = –0.25), “improving marital relationship” (β = 0.24), “seeking social support” (β = –0.22) and “self-acceptation and growth” (β =0 .19) as well as parents′ perceived limitation by illness in daily life (β = –0.15; explained variance 57%). In the comprehensive care for families with a child suffering from a renal disease, screening for psychosocial strains and ways of coping, along with applying interventions to strengthen adaptive coping strategies, may be a preventative means of improving parents′ quality of life.
Literature
1.
go back to reference van der Heijden BJ, van Dijk PC, Verrier-Jones K, Jager KJ, Briggs JD (2004) Renal replacement therapy in children: data from 12 registries in Europe. Pediatr Nephrol 19:213–221CrossRefPubMed van der Heijden BJ, van Dijk PC, Verrier-Jones K, Jager KJ, Briggs JD (2004) Renal replacement therapy in children: data from 12 registries in Europe. Pediatr Nephrol 19:213–221CrossRefPubMed
2.
go back to reference Lewis MA, Shaw J, Sinha M, Adalat S, Hussain F, Inward C (2009) UK renal registry 11th annual report. Nephron Clin Pract 111(suppl 1):c257–c267CrossRefPubMed Lewis MA, Shaw J, Sinha M, Adalat S, Hussain F, Inward C (2009) UK renal registry 11th annual report. Nephron Clin Pract 111(suppl 1):c257–c267CrossRefPubMed
3.
go back to reference Aldridge MD (2008) How do families adjust to having a child with chronic kidney failure? A systematic review. Nephrol Nurs J 35:157–162PubMed Aldridge MD (2008) How do families adjust to having a child with chronic kidney failure? A systematic review. Nephrol Nurs J 35:157–162PubMed
4.
go back to reference Tong A, Lowe A, Sainsbury P, Craig JC (2008) Experiences of parents who have children with chronic kidney disease: a systematic review of qualitative studies. Pediatrics 121:349–360CrossRefPubMed Tong A, Lowe A, Sainsbury P, Craig JC (2008) Experiences of parents who have children with chronic kidney disease: a systematic review of qualitative studies. Pediatrics 121:349–360CrossRefPubMed
5.
go back to reference Zelikovsky N, Schast AP, Jean-Francois D (2007) Parent stress and coping: waiting for a child to receive a kidney transplant. J Clin Psychol Med Settings 14:320–329CrossRef Zelikovsky N, Schast AP, Jean-Francois D (2007) Parent stress and coping: waiting for a child to receive a kidney transplant. J Clin Psychol Med Settings 14:320–329CrossRef
6.
go back to reference Anthony SJ, Hebert D, Todd L, Korus M, Langlois V, Pool R, Robinson LA, Williams A, Pollock-Barziv SM (2010) Child and parental perspectives of multidimensional quality of life outcomes after kidney transplantation. Pediatr Transplant 14:249–256CrossRefPubMed Anthony SJ, Hebert D, Todd L, Korus M, Langlois V, Pool R, Robinson LA, Williams A, Pollock-Barziv SM (2010) Child and parental perspectives of multidimensional quality of life outcomes after kidney transplantation. Pediatr Transplant 14:249–256CrossRefPubMed
7.
go back to reference Young GS, Libman Mintzer L, Seacord D, Castaneda M, Mesrkhani V, Stuber ML (2003) Symptoms of posttraumatic stress disorder in parents of transplant recipients: incidence, severity, and related factors. Pediatrics 111:725–731CrossRef Young GS, Libman Mintzer L, Seacord D, Castaneda M, Mesrkhani V, Stuber ML (2003) Symptoms of posttraumatic stress disorder in parents of transplant recipients: incidence, severity, and related factors. Pediatrics 111:725–731CrossRef
8.
go back to reference Farley LM, DeMaso DR, D’Angelo E, Kinnamon C, Bastardi H, Hill CE, Blume ED, Logan DE (2007) Parenting stress and parental post-traumatic stress disorder in families after pediatric heart transplantation. J Heart Lung Transplant 26:120–126CrossRefPubMed Farley LM, DeMaso DR, D’Angelo E, Kinnamon C, Bastardi H, Hill CE, Blume ED, Logan DE (2007) Parenting stress and parental post-traumatic stress disorder in families after pediatric heart transplantation. J Heart Lung Transplant 26:120–126CrossRefPubMed
9.
go back to reference Tsai TC, Liu SI, Tsai JD, Chou LH (2006) Psychosocial effects on caregivers for children on chronic peritoneal dialysis. Kidney Int 70:1983–1987CrossRefPubMed Tsai TC, Liu SI, Tsai JD, Chou LH (2006) Psychosocial effects on caregivers for children on chronic peritoneal dialysis. Kidney Int 70:1983–1987CrossRefPubMed
10.
go back to reference Heaton J, Noyes J, Sloper P, Shah R (2005) Families′ experiences of caring for technology-dependent children: a temporal perspective. Health Soc Care Community 13:441–450CrossRefPubMed Heaton J, Noyes J, Sloper P, Shah R (2005) Families′ experiences of caring for technology-dependent children: a temporal perspective. Health Soc Care Community 13:441–450CrossRefPubMed
11.
go back to reference de Paula ES, Nascimento LC, Rocha SM (2008) Roles assessment in families of children with chronic renal failure on peritoneal dialysis. Int J Nurs Pract 14:215–220CrossRefPubMed de Paula ES, Nascimento LC, Rocha SM (2008) Roles assessment in families of children with chronic renal failure on peritoneal dialysis. Int J Nurs Pract 14:215–220CrossRefPubMed
12.
go back to reference Cimete G (2002) Stress factors and coping strategies of parents with children treated by hemodialysis: a qualitative study. J Pediatr Nurs 17:297–306CrossRefPubMed Cimete G (2002) Stress factors and coping strategies of parents with children treated by hemodialysis: a qualitative study. J Pediatr Nurs 17:297–306CrossRefPubMed
13.
go back to reference Douglas JE, Hulson B, Trompeter RS (1998) Psycho-social outcome of parents and young children after renal transplantation. Child Care Health Dev 24:73–83CrossRefPubMed Douglas JE, Hulson B, Trompeter RS (1998) Psycho-social outcome of parents and young children after renal transplantation. Child Care Health Dev 24:73–83CrossRefPubMed
14.
go back to reference Goldstein SL, Graham N, Burwinkle T, Warady B, Farrah R, Varni JW (2006) Health-related quality of life in pediatric patients with ESRD. Pediatr Nephrol 21:846–850CrossRefPubMed Goldstein SL, Graham N, Burwinkle T, Warady B, Farrah R, Varni JW (2006) Health-related quality of life in pediatric patients with ESRD. Pediatr Nephrol 21:846–850CrossRefPubMed
15.
go back to reference Chiu MC, Ng CF, Lee LP, Lai WM, Lau SC (2007) Automated peritoneal dialysis in children and adolescents-benefits: a survey of patients and parents on health-related quality of life. Perit Dial Int 27:138–142 Chiu MC, Ng CF, Lee LP, Lai WM, Lau SC (2007) Automated peritoneal dialysis in children and adolescents-benefits: a survey of patients and parents on health-related quality of life. Perit Dial Int 27:138–142
16.
go back to reference Goldstein SL, Rosburg NM, Warady BA, Seikaly M, McDonald R, Limbers C, Varni JW (2009) Pediatric end stage renal disease health-related quality of life differs by modality: a PedsQL ESRD analysis. Pediatr Nephrol 24:1553–1560CrossRefPubMed Goldstein SL, Rosburg NM, Warady BA, Seikaly M, McDonald R, Limbers C, Varni JW (2009) Pediatric end stage renal disease health-related quality of life differs by modality: a PedsQL ESRD analysis. Pediatr Nephrol 24:1553–1560CrossRefPubMed
17.
go back to reference Lai WM (2009) Quality of life in children with end-stage renal disease: does treatment modality matter? Perit Dial Int 29:190–191 Lai WM (2009) Quality of life in children with end-stage renal disease: does treatment modality matter? Perit Dial Int 29:190–191
18.
go back to reference Rosenkranz J, Reichwald-Klugger E, Oh J, Turzer M, Mehls O, Schaefer F (2005) Psychosocial rehabilitation and satisfaction with life in adults with childhood-onset of end-stage renal disease. Pediatr Nephrol 20:1288–1294CrossRefPubMed Rosenkranz J, Reichwald-Klugger E, Oh J, Turzer M, Mehls O, Schaefer F (2005) Psychosocial rehabilitation and satisfaction with life in adults with childhood-onset of end-stage renal disease. Pediatr Nephrol 20:1288–1294CrossRefPubMed
19.
go back to reference Ravens-Sieberer U, Morfeld M, Stein REK, Jessop DJ, Bullinger M, Thyen U (2001) Der Familien-Belastungs-Fragebogen (FaBel-Fragebogen). Testung und Validierung der deutschen Version der “Impact on family scale” bei Familien mit behinderten Kindern. Psychother Psychosom Med Psychol 51:384–393CrossRefPubMed Ravens-Sieberer U, Morfeld M, Stein REK, Jessop DJ, Bullinger M, Thyen U (2001) Der Familien-Belastungs-Fragebogen (FaBel-Fragebogen). Testung und Validierung der deutschen Version der “Impact on family scale” bei Familien mit behinderten Kindern. Psychother Psychosom Med Psychol 51:384–393CrossRefPubMed
20.
go back to reference Krause MP, Petermann F (1998) Konstruktion einer Bewältigungsskala für Eltern behinderter Kinder (Soziale Orientierungen von Eltern behinderter Kinder–SOEBEK). Kindheit und Entwicklung 7:112–120 Krause MP, Petermann F (1998) Konstruktion einer Bewältigungsskala für Eltern behinderter Kinder (Soziale Orientierungen von Eltern behinderter Kinder–SOEBEK). Kindheit und Entwicklung 7:112–120
21.
go back to reference Muthny FA (1989) FKV–Freiburger Fragebogen zur Krankheitsverarbeitung. Manual, Hogrefe Verlag, Göttingen Muthny FA (1989) FKV–Freiburger Fragebogen zur Krankheitsverarbeitung. Manual, Hogrefe Verlag, Göttingen
22.
go back to reference Goldbeck L, Storck M (2002) Das Ulmer Lebensqualitäts-Inventar für Eltern chronisch kranker Kinder (ULQIE): entwicklung und psychometrische Eigenschaften. Z Klin Psychol Psychother 31:31–39CrossRef Goldbeck L, Storck M (2002) Das Ulmer Lebensqualitäts-Inventar für Eltern chronisch kranker Kinder (ULQIE): entwicklung und psychometrische Eigenschaften. Z Klin Psychol Psychother 31:31–39CrossRef
23.
go back to reference Goldbeck L (2006) The impact of newly diagnosed chronic paediatric conditions on parental quality of life. Qual Life Res 15:1121–1131CrossRefPubMed Goldbeck L (2006) The impact of newly diagnosed chronic paediatric conditions on parental quality of life. Qual Life Res 15:1121–1131CrossRefPubMed
24.
go back to reference Frei U, Schober-Halstenberg HJ (2008) Nierenersatztherapie in Deutschland. QuaSi Niere gGmbH, Berlin Frei U, Schober-Halstenberg HJ (2008) Nierenersatztherapie in Deutschland. QuaSi Niere gGmbH, Berlin
25.
go back to reference Wiedebusch S, Muthny FA (2009) Eltern von chronisch kranken Kindern. Lebensqualität, psychosoziale Belastungen und Bedürfnisse. Monatsschr Kinderheilkd 157:903–910CrossRef Wiedebusch S, Muthny FA (2009) Eltern von chronisch kranken Kindern. Lebensqualität, psychosoziale Belastungen und Bedürfnisse. Monatsschr Kinderheilkd 157:903–910CrossRef
26.
go back to reference Burke ML, Eakes GG, Hainsworth MA (1999) Milestones of chronic sorrow: perspectives of chronically ill and bereaved persons and family caregivers. J Fam Nurs 5:374–387CrossRef Burke ML, Eakes GG, Hainsworth MA (1999) Milestones of chronic sorrow: perspectives of chronically ill and bereaved persons and family caregivers. J Fam Nurs 5:374–387CrossRef
27.
go back to reference Roos S (2002) Chronic sorrow: a living loss. Brunner-Routledge, New York Roos S (2002) Chronic sorrow: a living loss. Brunner-Routledge, New York
28.
go back to reference Simons L, Ingerski LM, Janicke DM (2007) Social support, coping, and psychological distress in mothers and fathers of pediatric transplant candidates: a pilot study. Pediatr Transplant 11:781–787CrossRefPubMed Simons L, Ingerski LM, Janicke DM (2007) Social support, coping, and psychological distress in mothers and fathers of pediatric transplant candidates: a pilot study. Pediatr Transplant 11:781–787CrossRefPubMed
29.
go back to reference Bottos AM, Zanon E, Sartori MT, Girolami A (2007) Psychological aspects and coping styles of parents with heamophilic child undergoing a programme of counselling and psychological support. Haemophilia 13:305–310CrossRefPubMed Bottos AM, Zanon E, Sartori MT, Girolami A (2007) Psychological aspects and coping styles of parents with heamophilic child undergoing a programme of counselling and psychological support. Haemophilia 13:305–310CrossRefPubMed
30.
go back to reference Friedman AL (2006) The broader burden of end-stage renal disease on children and their families. Kidney Int 70:1893–1894CrossRefPubMed Friedman AL (2006) The broader burden of end-stage renal disease on children and their families. Kidney Int 70:1893–1894CrossRefPubMed
Metadata
Title
Health-related quality of life, psychosocial strains, and coping in parents of children with chronic renal failure
Authors
Silvia Wiedebusch
Martin Konrad
Helmut Foppe
Evelyn Reichwald-Klugger
Franz Schaefer
Vera Schreiber
Fritz A. Muthny
Publication date
01-08-2010
Publisher
Springer-Verlag
Published in
Pediatric Nephrology / Issue 8/2010
Print ISSN: 0931-041X
Electronic ISSN: 1432-198X
DOI
https://doi.org/10.1007/s00467-010-1540-z

Other articles of this Issue 8/2010

Pediatric Nephrology 8/2010 Go to the issue