Cent Eur J Nurs Midw 2016, 7(4):534-541 | DOI: 10.15452/CEJNM.2016.07.0026

Associations between the quality of life of children with chronic diseases, their parents' quality of life and family coping strategies

Lucie Sikorová*, Radka Bužgová
Department of Nursing and Midwifery, Faculty of Medicine, University of Ostrava, Czech Republic

Aim: The survey aimed at determining the associations between the quality of life of children with chronic diseases, the quality of life of their parents and coping strategies used in the family.

Design: A cross-sectional study.

Methods: The study was performed as quantitative research using a questionnaire survey in chronically ill children (n = 288) aged 2-12 years and their parents. The following instruments were used: Pediatric Quality of Life Inventory, Pediatric Quality of Life Inventory Family Impact Module and Family Crisis Oriented Personal Evaluation Scales.

Results: The association between the quality of life of diabetic children and their parents' quality of life, family functioning and the impact of the illness on the family was weak. Children with diabetes had the highest quality of life but the quality of life of their parents was lowest among all disease groups in the study. The lowest overall quality of life of children was noted among those with juvenile idiopathic arthritis. The strongest positive associations between internal coping strategies (i.e. reframing and passive appraisal) and children's and parents' quality of life was observed in the families of children with asthma.

Conclusions: The weak association between children's and parents' quality of life and coping strategies pointed to their low effectiveness. The results suggest that relevant interventions should be used that promote selection of new coping strategies.

Keywords: quality of life, child, family, coping, asthma, juvenile idiopathic arthritis, diabetes mellitus

Received: November 1, 2016; Accepted: November 30, 2016; Published: September 30, 2016  Show citation

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Sikorová L, Bužgová R. Associations between the quality of life of children with chronic diseases, their parents' quality of life and family coping strategies. Central European Journal of Nursing and Midwifery. 2016;7(4):534-541. doi: 10.15452/CEJNM.2016.07.0026.
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References

  1. Adams RJ, Wilson D, Smith BJ, Ruffin RE. Impact of coping and socioeconomic factors on quality of life in adults with asthma. Respirology. 2004;9(1):87-95. Go to original source... Go to PubMed...
  2. American Academy of Pediatrics. Family-centered care and the pediatricianʼs role. Committee on Hospital Care. Pediatrics. 2003;112(3):691-697. Go to original source... Go to PubMed...
  3. Auslander FW, Bubb J, Rogge M, Santiago JV. Family stress and resources: potential areas of intervention in children recently diagnosed with diabetes. Health and Social Work. 1993;18(2):101-113. Go to original source... Go to PubMed...
  4. Azar R, Solomon CR. Coping strategies of parents facing child diabetes mellitus. Journal of Pediatric Nursing. 2001;16(6):418-428. Go to original source... Go to PubMed...
  5. Brown ES, Gan V, Jeffress J, Mullen-Gingrich K, Khan DA, Wood BL, Miller BD, Gruchalla R, Rush AJ. Psychiatric symptomatology and disorders in caregivers of children with asthma. Pediatrics. 2006;118(6):e1715- 1720. Go to original source... Go to PubMed...
  6. Cavallo S, Feldman DE, Swaine B, Meshefedjian G, Malleson PN, Duffy CM. Is parental coping associated with quality of life in juvenile idiopathic arthritis? Pediatric Rheumatology Online Journal. 2009;7:7. Go to original source... Go to PubMed...
  7. Compas BE, Jaser SS, Dunn MJ, Rodriguez EM. Coping with chronic illness in childhood and adolescence. Annual Review of Clinical Psychology. 2012;8:455-480. Go to original source... Go to PubMed...
  8. Crespo C, Carona C, Silva N, Canavarro MC, Dattilio F. Understanding the quality of life for parents and their children who have asthma: family resources and challenges. Contemporary Family Therapy. 2011;33(2):179-196. Go to original source...
  9. Gerson R. The family life cycle: Phases, stages, and crises. In: Mikesell RH, Lusterman DD, McDaniel SH, editors. Integrating family therapy. Washington, DC: American Psychological Association; 1995. p. 90-111. Go to original source...
  10. Grey M. Coping and psychological adjustment in mothers of young children with type 1 diabetes. Childrenʼs Health Care. 2009;38(2):91-106. Go to original source... Go to PubMed...
  11. Guᵭmundsdóttir HS, Guᵭmundsdóttir D, Elklit A. Risk and resistance factors for psychological distress in icelandic parents of chronically ill children: an application of Wallander and Varni's Disability-Stress-Coping Model. Journal of Clinical Psychology in Medical Settings. 2006;13(3):299-306.
  12. Gutierrez-Suarez R, Pistorio A, Cespedes Cruz A, Norambuena X, Flato B, Rumba I, Harjacek M, Nielsen S, Susic G, Mihaylova D, Huemer C, Melo-Gomes J, Andersson-Gare B, Balogh Z, De Cunto C, Vesely R, Pagava K, Romicka AM, Burgos-Vargas R, Martini A, Ruperto N; Pediatric Rheumatology International Trials Organisation (PRINTO). Health-related quality of life of patients with juvenile idiopathic arthritis coming from 3 different geographic areas: the PRINTO multinational quality of life cohort study. Rheumatology (Oxford). 2007;46(2):314-320. Go to original source... Go to PubMed...
  13. Hanson MJ, Hanline MF. Parenting a child with disability: a longitudinal study of parental stress and adaptation. Journal of Early Intervention. 1990;14(3):234-248. Go to original source...
  14. Hatzmann J, Heymans HS, Ferrer-i-Carbonell A, van Praag BM, Grootenhuis MA. Hidden consequences of success in pediatrics: parental health-related quality of liferesults from the Care Project. Pediatrics. 2008;122(5):e1030-1038. Go to original source... Go to PubMed...
  15. Haverman L, Grootenhuis MA, van den Berg JM, van Veenendaal M, Dolman KM, Swart JF, Kuijpers TW, van Rossum MA. Predictors of health-related quality of life in children and adolescents with juvenile idiopathic arthritis: results from a Web-based survey. Arthritis Care and Research (Hoboken). 2012;64(5):694-703. Go to original source... Go to PubMed...
  16. Hodaňová L, Hlaváčová E, Čermáková E, Csémy L, Šmejkalová J. Sledování kvality života u českých dětí. In: Koukola B, Mareš J, editors. Psychologie zdraví a kvalita života. Brno: MSD; 2008. s. 70-74. (in Czech)
  17. Jafari P, Forouzandeh E, Bagheri Z, Karamizadeh Z, Shalileh K. Health related quality of life of Iranian children with type 1 diabetes: reliability and validity of the Persian version of the PedsQL™ Generic Core Scales and Diabetes Module. Health and Quality of Life Outcomes. 2011;9:104. Go to original source... Go to PubMed...
  18. Janse AJ, Sinnema G, Uiterwaal CS, Kimpen JL, Gemke RJ. Quality of life in chronic illness: children, parents and paediatricians have different, but stable perceptions. Acta Paediatrica. 2008;97(8):1118-1124. Go to original source... Go to PubMed...
  19. Kalyva E, Malakonaki E, Eiser C, Mamoulakis D. Healthrelated quality of life (HRQoL) of children with type 1 diabetes mellitus (T1DM): self and parental perceptions. Pediatric Diabetes. 2011;12(1):34-40. Go to original source... Go to PubMed...
  20. Lebovidge JS, Lavigne J, Donenberg G, Miller M. Psychological adjustment of children and adolescents with chronic arthritis: a meta-analytic review. Journal of Pediatric Psychology. 2003;28(1):29-39. Go to original source... Go to PubMed...
  21. McCubbin HI, Thomson AI, McCubbin MA. Family assessment: resiliency, coping and adaptation - Inventories for research and practice. 1 st ed. Wisconsin: University of Wisconsin system Publishers; 1996.
  22. Meltzer LJ, Moore M. Sleep disruptions in parents of children and adolescents with chronic illnesses: prevalence, causes, and consequences. Journal of Pediatric Psychology. 2008;33(3):279-291. Go to original source... Go to PubMed...
  23. Miller H, Curran A, Hameed B, Sharples P. Relationship between parental coping strategies and family functioning and behavioural outcome and quality of life in children with severe, moderate, and mild traumatic brain injury. Archives of Disease in Childhood. 2006;91:39-41. Go to PubMed...
  24. Moreira H, Frontini R, Bullinger M, Canavarro MC. Family cohesion and health-related quality of life of children with type 1 diabetes: the mediating role of parental adjustment. Journal of Child and Family Studies. 2014;23(2):347-359. Go to original source...
  25. Murphy NA, Christian B, Caplin DA, Young PC. The health of caregivers for children with disabilities: caregiver perspectives. Child: Care, Health and Development. 2007;33(2):180-187. Go to original source... Go to PubMed...
  26. Nansel TR, Weisberg-Benchell J, Wysocki T, Laffel L, Anderson B; Steering Committee of the Family Management of Diabetes Study. Quality of life in children with type 1 diabetes: a comparison of general and diabetes-specific measures, and support for a unitary diabetes quality of life construct. Diabetic Medicine. 2008;25(11):1316-1323. Go to original source... Go to PubMed...
  27. Norrby U, Nordholm L, Andersson-Gäre B, Fasth A. Health-related quality of life in children diagnosed with asthma, diabetes, juvenile chronic arthritis or short stature. Acta Paediatrica. 2006;95(4):450-456. Go to original source... Go to PubMed...
  28. Pettoello-Mantovani M, Campanozzi A, Maiuri L, Giardino I. Family-oriented and family-centered care in pediatrics. Italian Journal of Pediatrics. 2009;35(1):12. Go to original source... Go to PubMed...
  29. Rodriguez-Orozco AR, Núñez-Tapia RM, Ramírez-Silva A, Gómez-Alonso C. No direct association among respiratory function, disease control and family functioning in a sample of mexican children with intermittent asthma. Iranian Journal of Allergy, Asthma, and Immunology. 2013;12(2):129-135. Go to PubMed...
  30. Sales J, Fivush R, Teague GW. The role of parental coping in children with asthmaʼs psychological well -being and asthma-related quality of life. Journal of Pediatric Psychology. 2008;33(2):208-219. Go to original source... Go to PubMed...
  31. Sand P, Kljajić M, Schaller J, Forsander G. The reliability of the Health Related Quality of Life questionnaire PedsQL 3.0 Diabetes Module ™ for Swedish children with Type 1 diabetes. Acta Paediatrica. 2012;101(8):e344-349. Go to original source... Go to PubMed...
  32. Sawyer MG, Whitham JN, Roberton DM, Taplin JE, Varni JW, Baghurst PA. The relationship between health-related quality of life, pain and coping strategies in juvenile idiopathic arthritis. Rheumatology (Oxford). 2004;43(3):325-330. Go to original source... Go to PubMed...
  33. Smith CC. The biopsychosocial revolution: interviewing and provider-patient relationships becoming key issues for primary care. Journal of General Internal Medicine. 2002;17(4):309-310. Go to original source...
  34. Summers JA, Poston DJ, Turnbul AP, Marquis J, Hoffman L, Mannan H, Wang M. Conceptualizing and measuring family quality of life. Journal of Intellectual Disability Research. 2005;49(Pt 10):777-783. Go to original source... Go to PubMed...
  35. Vágnerová M. Psychopatologie pro pomáhající profese. Praha: Portál; 2008. (in Czech)
  36. van den Tweel XW, Hatzmann J, Ensink E, van der Lee JH, Peters M, Fijnvandraat K, Grootenhuis M. Quality of life of female caregivers of children with sickle cell disease: a survey. Haematologica. 2008;93(4):588-593. Go to original source... Go to PubMed...
  37. Van De Ven MO, Engels RC, Sawyer SM, Otten R, Van Den Eijnden RJ. The role of coping strategies in quality of life of adolescents with asthma. Quality of Life Research. 2007;16(4):625-634. Go to original source... Go to PubMed...
  38. Varni WJ. PedsQLTM Dotazník o pediatrické kvalitě života, verze 4.0 - česky. Zpráva rodičů o batolatech (2 - 4 roky). 1998a. (in Czech)
  39. Varni WJ. PedsQLTM Dotazník o pediatrické kvalitě života, verze 4.0 - česky. Zpráva o malém dítěti (5 - 7 let). 1998b. (in Czech)
  40. Varni WJ. PedsQLTM Dotazník o pediatrické kvalitě života, verze 4.0 - česky. Zpráva o dítěti (8 - 12 let). 1998c. (in Czech)
  41. Varni WJ. PedsQLTMDotazník o pediatrické kvalitě života. Modul Vliv na rodinu, verze 2.0. - česky, zpráva rodičů. 1998d. (in Czech)
  42. Varni WJ. Scaling and scoring of the Pediatric Quality of Life Inventory™ PedsQLTM Generic Core scales. 2012.
  43. Verhoof EJA, Maurice-Stam H, Heymans HSA, Evers AWM, Grootenhuis MA. Psychosocial well-being in young adults with chronic illness since childhood: the role of illness cognitions. Child and Adolescent Psychiatry and Mental Health. 2014;8:12. Go to original source... Go to PubMed...
  44. Walders N, Kercsmar C, Schluchter M, Redline S, Kirchner HL, Drotar D. An interdisciplinary intervention for undertreated pediatric asthma. Chest. 2006;129(2):292-299. Go to original source... Go to PubMed...
  45. Wiedebusch S, Pollmann H, Siegmund B, Muthny FA. Quality of life, psychosocial strains and coping in parents of children with haemophilia. Haemophilia. 2008;14(5):1014-1022. Go to original source... Go to PubMed...
  46. Willems DC, Joore MA, Nieman FH, Severens JL, Wouters EF, Hendriks JJ. Using EQ-5D in children with asthma, rheumatic disorders, diabetes, and speech/language and/or hearing disorders. International Journal of Technology Assessment in Health Care. 2009;25(3):391-399. Go to original source... Go to PubMed...

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