Quality of Life in Parents of Children with Cerebral Palsy: Is it Influenced by the Child's Behaviour?

Abstract

The aims of the present study were: to examine the quality of life (QOL) of parents of children with cerebral palsy (CP) and to establish the possible effect of behaviour problems on their QOL. One-hundred children with CP, aged between 4 and 10 years, and both their parents were included in the study. Both parents completed the WHOQOL-BREF, to assess their QOL. A sample of 60 parents of healthy children was used as control group. The primary caregiver also completed the child behaviour checklist (CBCL). Parents of children with CP showed lower scores on physical and psychological domains than the control group on QOL. In the psychological domain the mothers of children with hemiplegia had the lowest scores. The mothers reported lower scores than the fathers for the physical domain in the group of children with diplegia and quadriplegia and for the psychological domain in the group of children with hemiplegia. Children with hemiplegia showed externalizing scores at CBCL higher than the other groups, that could explain the poorer QOL scores of their mothers. In conclusions our results provide useful information on the QOL in families with different forms of CP, useful in planning interventions for the family of children with CP.

Key words

quality of life - cerebral palsy - CBCL - behavioural problems

References

• 1 Achenbach TM. Manual for the CBCL/4–18 and Profile.. Department of Psychiatry: University of Vermont; 1991
• 2 Bax M, Goldstein M, Rosenbaum P. et al . Proposed definition and classification of cerebral palsy, April 2005.  Dev Med Child Neurol. 2005;  47 571-576
• 3 Brehaut JC, Kohen DE, Raina P. et al . The health of primary caregivers of children with cerebral palsy: how does it compare with that of other Canadian caregivers?.  Pediatrics. 2004;  114 182-191
• 4 Breslau N, Staruch KS, Mortimer EA. Psychological distress in mothers of disabled children.  Am J Dis Child. 1982;  136 682-686
• 5 Davis E, Shelly A, Waters E. et al . The impact of caring for a child with cerebral palsy: quality of life for mothers and fathers.  Child Care Health Dev. 2010;  36 63-73
• 6 De Girolamo G, Rucci P, Scocco P. et al . Quality of life assessment; validation of the Italian version of the WHOQOL-Brief.  Epidemiol Psichiatr Soc. 2000;  9 45-55
• 7 Development of the World Health Organization . WHO-QOL-BREF Quality of life assessment. The WHOQOL Group.  Psichol Med. 1998;  28 551-558
• 8 Eker L, Tüzün EH. An evaluation of quality of life of mothers of children with cerebral palsy.  Disabil Rehabil. 2004;  26 1354-1359
• 9 Goodman R, Graham P. Psychiatric problems in children with hemiplegia: cross sectional epidemiological survey.  BMJ. 1996;  312 1065-1068
• 10 Goodman R. Brain disorders.. In Rutter M and Taylor E, Child and adolescent psychiatry 4th Ed. Malden, MA Blackwell Publishing; 2002
• 11 Himmelmann K, Hagberg G, Beckung E. et al . The changing panorama of cerebral palsy in Sweden. IX. Prevalence and origin in the birth-year period 1995–1998.  Acta Paediatr. 2005;  94 287-294
• 12 Howard J, Soo B, Graham HK. et al . Cerebral palsy in Victoria: motor types, topography and gross motor function.  J Paediatr Child Health. 2005;  41 479-483
• 13 King G, King S, Rosenbaum P. et al . Family-centered caregiving and well-being of parents of children with disabilities: linking process with outcome.  J Pediatr Psychol. 1999;  24 41-53
• 14 McDermott S, Coker AL, Mani S. et al . A population-based analysis of behaviour problems in children with cerebral palsy.  J Ped Psychol. 1996;  21 447-463
• 15 Mugno D, Ruta L, Genitori V. et al . Impairment of quality of life in parents of children and adolescents with pervasive developmental disorder.  Health and Quality of Life Outcomes. 2007;  5 22
• 16 Palisano R, Rosenbaum P, Walter S. et al . Development and reliability of a system to classify gross motor function in children with cerebral palsy.  Dev Med Child Neurol. 1997;  39 214-223
• 17 Raina P, O’Donnell M, Rosenbaum P. et al . The health and well-being of caregivers of children with cerebral palsy.  Pediatrics. 2005;  115 e626-e636
• 18 Sen E, Yurtsever S. Difficulties experienced by families with disabled children.  J Spec Pediatr Nurs. 2007;  12 238-252
• 19 Stanley F, Blair E, Alberman E. Cerebral palsies: epidemiology & causal pathways.. Cambridge, Mac Keith Press; 2000
• 20 Wechsler D. Wechsler Pre-school and Primary scale of Intelligence, WPPSI.. The psychological corporation, Harcourt Brace Jovanavich, UK; 1967
• 21 Wechsler D. Wechsler Intelligence Scale for children-Revised, WISC-R.. The psychological corporation, Harcourt Brace Jovanavich, UK; 1976
• 22 World Health Organisation's Quality of Life Group .WHOQOLBREF. Introduction, administration and scoring, field trial version.. Geneva: World Health Organisation; 1996
• 23 Yude C, Goodman R. Peer problems of 9 to 11 year old children with hemiplegia in mainstream school. Can these be predicted?.  Dev Med Child Neurol. 1999;  41 4-8

Correspondence