Skip to main content

Advertisement

Log in

The impact of newly diagnosed chronic paediatric conditions on parental quality of life

  • Published:
Quality of Life Research Aims and scope Submit manuscript

Abstract

Objective: Parental functioning and well-being are important aspects of a family’s adaptation to chronic paediatric conditions. This study investigates the effects of diagnosis (cancer vs. diabetes/epilepsy) and time since diagnosis on parental quality of life (PQL). Methods: 122 parents (66 mothers, 56 fathers), whose children were diagnosed and treated for one chronic disease, filled in the Ulm Quality of Life Inventory for Parents twice within the first three months after the initial diagnosis. The effects of diagnosis and time (1–2 weeks and 2–3 months after diagnosis) on PQL were analysed separately for mothers and fathers. Results: Parents of a child with cancer consistently reported lower PQL compared with parents of a child with diabetes/epilepsy. Only the fathers’ well-being increased significantly within the first three months after the child was diagnosed for a chronic disease. However, in most of the PQL domains there was a persistent impairment within the time-frame of this study. Parents of children with a chronic disease were more satisfied with their family situation than healthy controls. Age of the child was positively correlated with PQL. Conclusions: A diagnosis of cancer, especially in young children, has a strong negative effect on PQL. Measuring PQL in a preventive approach would help to identify vulnerable parents and to provide psychosocial support in time.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Similar content being viewed by others

Abbreviations

PQL:

Parental Quality of Life

QL:

Quality of life

ULQIE:

Ulm Quality of Life Inventory for Parents

References

  1. Stein REK and Silver EJ (1999). Operationalizing a conceptually based noncategorial definition. Arch Pediatr Adolesc Med 153: 68–74

    PubMed  CAS  Google Scholar 

  2. Silver EJ, Westbrook LE and Stein REK (1998). Relationship of parental psychological distress to consequences of chronic health conditions in children. J Pediatr Psychol 23: 5–15

    Article  PubMed  CAS  Google Scholar 

  3. Quittner AL, Espelage D, Opipari L, Carter B, Eid N and Eigen H (1998). Role strain in couples with and without a child with chronic illness: Associations with marital satisfaction, intimacy, and daily mood. Health Psychol 17: 112–124

    Article  PubMed  CAS  Google Scholar 

  4. Cohen MS (1999). Families Coping with Childhood Chronic Illness: A Research Review. Families Systems Health 17: 149–164

    Article  Google Scholar 

  5. Dahlquist LM, Czyzewski DI, Copeland KG, Jones CJ, Taub E and Vaughan JK (1993). Parents of children newly diagnosed with cancer: anxiety, coping, and marital distress. J Pediatr Psychol 18: 365–376

    Article  PubMed  CAS  Google Scholar 

  6. Mastroyannopoulou K, Stallard P, Lewis M and Lenton S (1997). The impact of childhood non-malignant life-threatening illness on parents: gender differences and predictors of parental adjustment. J Child Psychol Psychiat 38: 823–829

    Article  PubMed  CAS  Google Scholar 

  7. Quittner AL, Glueckauf RL and Jackson DN (1990). Chronic parenting stress: moderating versus mediating effects of social support. J Personal Soc Psychol 59: 1266–1278

    Article  CAS  Google Scholar 

  8. Sloper P (2000). Predictors of distress in parents of children with cancer: a prospective study. J Pediatr Psychol 25: 79–91

    Article  PubMed  CAS  Google Scholar 

  9. Kazak AE (1992). The social context of coping with childhood illness: family systems and social support. In: Siegel, LJ, Wallander, JL and Walker, CE (eds) Stress and Coping in Child Health, pp 262–278. The Guilford Press, New York

    Google Scholar 

  10. Drotar D (1997). Relating parent and family functioning to the psychological adjustment of children with chronic health conditions: what have we learned? what do we need to know?. J Pediatr Psychol 22: 149–165

    Article  PubMed  CAS  Google Scholar 

  11. Lemanek KL (1996). Assessment as a process in pediatric psychology. J Pediatr Psychol 21: 137–151

    Article  PubMed  Google Scholar 

  12. Kazak AE and Barakat L (1997). Brief report: Parenting stress and quality of life during treatment for childhood leukemia predicts child and parent adjustment after treatment ends. J Pediactr Psychol 22: 749–758

    Article  CAS  Google Scholar 

  13. Streisand R, Branieckie S, Tercyak KP and Kazak AE (2001). Childhood illness-related parenting stress: the pediatric inventory for parents. J Pediatr Psychol 26: 155–162

    Article  PubMed  CAS  Google Scholar 

  14. Phares V, Lopez E, Fields S, Kamboukos D and Duhig AM (2005). Are Fathers Involved In Pediatric Psychology Research and Treatment?. J Pediatr Psychol 30: 631–643

    Article  PubMed  Google Scholar 

  15. Hoekstra-Weebers JEHM, Jaspers JPC, Kamps WA and Klip EC (1998). Gender differences in psychological adaptation and coping in parents of pediatric cancer patients. Psycho-Oncol 7: 26–36

    Article  CAS  Google Scholar 

  16. Landolt MA, Vollrath M, Ribi K, Gnehm HE and Sennhauser FH (2003). Incidence and associations of parental and child posttraumatic stress symptoms in pediatric patients. J Child Psychol Psychiat 44: 1199–1207

    Article  PubMed  Google Scholar 

  17. Gill TM and Feinstein AR (1994). A critical appraisal of the quality-of-life measurements. JAMA 272: 619–626

    Article  PubMed  CAS  Google Scholar 

  18. Krener Knapp P and Harris ES (1998). Consultation-liaison in child psychiatry: a review of the past 10 years. Part I: clinical findings. J Am Acad Child Adolesc Psychiatr 37: 17–25

    Article  Google Scholar 

  19. Boman KK, Viksten J, Kogner P and Samuelsson U (2004). Serious illness in childhood: The different threats of cancer and diabetes from a parent perspective. J Pediatr 145: 373–379

    Article  PubMed  Google Scholar 

  20. Lawoko S and Soares JJF (2003). Quality of life among parents of children with congenital heart disease, parents of children with other diseases and parents of healthy children. Qual Life Res 12: 655–666

    Article  PubMed  CAS  Google Scholar 

  21. Holden EW, Chmielewski D, Nelson CC, Kager VA and Foltz L (1997). Controlling for general and disease-specific effects in child and family adjustment to chronic childhood illness. J Pediatr Psychol 22: 15–27

    Article  PubMed  CAS  Google Scholar 

  22. Lowes L, Lyne P and Gregory JW (2004). Childhood diabetes: parents’ experience of home management and the first year following diagnosis. Diabet Med 21: 531–538

    Article  PubMed  CAS  Google Scholar 

  23. Kovacs M, Iyengar S, Goldston D, Obrosky DS, Stewart J and Marsh J (2001). Psychological functioning among mothers of children with insulin-dependent diabetes mellitus: a longitudinal study. J Consult Clin Psychol 58: 189–195

    Google Scholar 

  24. Goldbeck L, Braun J, Storck M, Tönnessen D, Weyhreter H and Debatin K-M (2001). Adaptation von Eltern an eine chronische Erkrankung ihres Kindes nach der Diagnosestellung. Psychother Psychosom med Psychol 51: 62–67

    Article  PubMed  CAS  Google Scholar 

  25. Hoekstra-Weebers JEHM, Jaspers JPC, Kamps WA and Klip EC (2001). Psychological adaptation and social support of parents of pediatric cancer patients: a prospective longitudinal study. J Pediatr Psychol 26: 225–236

    Article  PubMed  CAS  Google Scholar 

  26. Ware JE, Snow KK, Kosinski M and Gandek B (1993). SF-36 Health Survey Manual. J.E. Ware, Boston

    Google Scholar 

  27. Terk C. Lebensqualität und Alltagsbewältigung mit cystischer Fibrose. unveröffentlichte Diplomarbeit, Fakultät für Kulturwissenschaften der Universität Klagenfurt, Institut für Psychologie, 2004

  28. Goldbeck L and Storck M (2001). Das Ulmer Lebensqualitäts-Inventar für Eltern chronisch kranker Kinder (ULQIE): Entwicklung und psychometrische Eigenschaften. Z Klin Psychol Psychoth 31: 31–39

    Article  Google Scholar 

  29. Wright PS (1993). Parents’ perceptions of their quality of life. J Pediatr Onc Nurs 10: 139–145

    CAS  Google Scholar 

  30. Enskar K, Carlsson M, Kreuger A and Hamrin E (1997). Development of a tool to measure the life situation of parents of children with cancer. Qual Life Res 6: 248–256

    Article  PubMed  CAS  Google Scholar 

  31. Kazak AE, Stuber M, Barakat L, Meeske K, Guthrie D and Meadows A (1998). Predicting posttraumatic stress symptoms in mothers and fathers of survivors of childhood cancer. J Am Acad Child Adolesc Psychiatry 37: 823–831

    Article  PubMed  CAS  Google Scholar 

  32. Byrne J, Fears TR and Steinhorn SC (1989). Marriage and divorce after childhood and adolescent cancer. JAMA 262: 2693–2699

    Article  PubMed  CAS  Google Scholar 

  33. McCubbin NHI, McCubbin NM, Cauble NM and Nevin R (1979). CHIP – Coping Health Inventory for Parents. University of Minnesota, Minnesota

    Google Scholar 

  34. Speechley KN and Noh S (1992). Surviving Childhood Cancer, Social Support and Parents’ Psychological Adjustment. J Pediatr Psychol 17: 15–31

    Article  PubMed  CAS  Google Scholar 

  35. Kazak AE, Boyer Bret A, Brophy P and Johnson K (1995). Parental perceptions of procedure-related distress and family adaptation in childhood leukemia. Children’s Health Care 24: 143–158

    Article  PubMed  CAS  Google Scholar 

  36. Seiffge-Krenke I, Boeger A, Hürter A, Moormann D, Nilles D and Suckow A (1994). Die Bewältigung chronischer Krankheiten im Jugendalter: Individuelle und familiäre Bewältigungsformen. In: Schüßler, G and Leibing, E (eds) Coping, pp 75–82. Verlaufs- und Therapiestudien chronischer Krankheit, Göttingen

    Google Scholar 

  37. Goldbeck L (2001). Parental coping with the diagnosis of childhood cancer: Gender effects, dissimilarity within couples and quality of life. Psycho-Oncology 10: 325–335

    Article  PubMed  CAS  Google Scholar 

  38. Adams-Greenly M (1991). Psychosocial Assessment and Intervention at Initial Diagnosis. Pediatrician 18: 3–10

    PubMed  CAS  Google Scholar 

  39. Bauman LJ, Drotar D, Leventhal JM, Perrin EC and Pless IB (1997). A review of psychosocial interventions for children with chronic health conditions. Pediatrics 100: 244–251

    Article  PubMed  CAS  Google Scholar 

Download references

Author information

Authors and Affiliations

Authors

Corresponding author

Correspondence to Lutz Goldbeck.

Rights and permissions

Reprints and permissions

About this article

Cite this article

Goldbeck, L. The impact of newly diagnosed chronic paediatric conditions on parental quality of life. Qual Life Res 15, 1121–1131 (2006). https://doi.org/10.1007/s11136-006-0068-y

Download citation

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s11136-006-0068-y

Keywords

Navigation