Burden and quality of life of informal caregivers of children with cerebral palsy





Caregivers; Patient Care; Burnout, Psychological; Quality of Life; Cerebral Palsy.


Objective: to analyze the caregiver burden and the quality of life of informal caregivers of children with cerebral palsy. Methods: the cross-sectional survey involved 109 caregivers of children with cerebral palsy recruited from physiotherapy clinic at a tertiary hospital. The quality of life and caregiver burden were assessed using the Personal Wellbeing Index Scale and the Modified Caregivers’ Strain Index, respectively. Data were analysed using descriptive and inferential statistics. Results: the mean strain index and quality of life scores of the participants were 11.85 ± 5.72 and 64.68 ± 8.03 respectively. The majority (67.9%) of the caregivers had fair personal well-being, while about one-third (33.0%) had high caregiver’s strain. Child’s age (B=2.454; p<0.005) and caregivers’ occupation (B= -2.547; p=0.001) were predictors of caregiver strain. Conclusion: caring for children with cerebral palsy imposed a substantial burden on the caregivers and child’s age and caregivers’ occupation were predictor variables.


Stavsky M, Mor O, Mastrolia SA, Greenbaum S, Than NG, Erez O. Cerebral palsy-trends in epidemiology and recent development in prenatal mechanisms of disease, treatment, and prevention. Front Pediatr. 2017; 5:21. doi: https://dx.doi.org/10.3389/fped.2017.00021

Patel DR, Neelakantan M, Pandher K, Merrick J. Cerebral palsy in children: a clinical overview. Transl Pediatr. 2020; 9(Suppl 1):125-35. doi: https://dx.doi.org/10.21037/tp.2020.01.01

Glinac A, Matović L, Delalić A, Mešalić L. Quality of life in mothers of children with cerebral palsy. Acta Clin Croat. 2017; 56(2):299-307. doi: https://doi.org/10.20471/acc.2017.56.02.14

Barros ALO, Gutierrez GM, Barros AO, Santos MTBR. Quality of life and burden of caregivers of children and adolescents with disabilities. Spec Care Dentist. 2019; 39(4):380-8. doi: https://doi.org/10.1111/scd.12400

Klutse KD, Naab F. Caregivers burden as risk factor against quality of life of caregivers of cerebral palsy patients: moderating role of social support. Int Neuropsychiatr Dis J. 2017; 10(4):1-8. doi: https://dx.doi.org/10.9734/INDJ/2017/39050

Garip Y, Ozel S, Tuncer OB, Kilinc G, Seckin F, Arasil T. Fatigue in the mothers of children with cerebral palsy. Disabil Rehabil. 2017; 39(8):757-62. doi: https://doi.org/10.3109/09638288.2016.1161837

Farajzadeh A, Maroufizadeh S, Amini M. Factors associated with quality of life among mothers of children with cerebral palsy. Int J Nurs Pract. 2020; 26(3):e12811. doi: https://doi.org/10.1111/ijn.12811

Albayrak I, Biber A, Çalışkan A, Levendoglu F. Assessment of pain, care burden, depression level, sleep quality, fatigue and quality of life in the mothers of children with cerebral palsy. J Child Health Care. 2019; 23(3):483-94. doi: https://doi.org/10.1177/1367493519864751

Ogunlana M, Oyewole O, Falola J, Davis A, Lateef A, Adepoju M. Psychosocial problems among mothers of children with cerebral palsy attending physiotherapy outpatient department of two selected tertiary health centres in Ogun state: a pilot study. AIMS Med Sci. 2019; 6(2):158-69. doi: https://dx.doi.org/10.3934/medsci.2019.2.158

Dezoti AP, Alexandre AMC, Freire MHS, Mercês NNA, Mazza VA. Social support to the families of children with cerebral palsy. Acta Paul Enferm. 2015; 28(2):172-6. doi: https://dx.doi.org/10.1590/1982-0194201500029

Marrón EM, Redolar-Ripol D, Boixadós M, Nieto R, Guillamón N, Hernández E, et al. Burden on caregivers of children with cerebral palsy: predictors and related factors. Uni Psychol [Internet]. 2013 [cited Jan 13, 2021]; 12(3):767-77. Available from: https://www.scielo.org.co/pdf/rups/v12n3/v12n3a10.pdf

Westphal-Guitti AC, Alonso NB, Migliorini RCVP, Silva TI, Azevedo AM, Caboclo LOSF, et al. Qua- lity of life and burden in caregivers of patients with epilepsy. J Neurosci Nurs. 2007; 39(6):354-60. doi: https://dx.doi.org/10.1097/01376517-200712000-00006

Al-Hassan MA, Al-Akour NA, Aburas MM. Relationship between motivational style and glycemic control in Jordanian patients with type 2 diabetes mellitus. J Diabetes. 2017; 9(1):93-101. doi: https://dx.doi.org/10.1111/1753-0407.12389

McIntyre E, Saliba A, McKenzie K. Subjective wellbeing in the Indian general population: a validation study of the Personal Wellbeing Index. Qual Life Res. 2020; 29(4):1073-81. doi: https://dx.doi.org/10.1007/s11136-019-02375-7

Ribeiro O, Brandão D, Oliveira AF, Martín I, Teixeira L, Paúl C. The modified caregiver strain index: portuguese version. J Health Psychol. 2019; 1359105319883933. doi: https://dx.doi.org/10.1177/1359105319883933

Xu N, Matsumoto H, Hyman J, Roye B, Kim H, Roye DP. Evaluation of assessment of caregiver experience with neuromuscular disease: reliability and responsiveness of a new caregiver-reported outcome measure in patients with cerebral palsy. Transl Pediatr. 2020; 9(4):507-12. doi: https://dx.doi.org/10.21037/tp-19-176

Masefield SC, Prady SL, Sheldon TA, Small N, Jarvis S, Pickett KE. The caregiver health effects of caring for young children with developmental disabilities: a meta-analysis. Matern Child Health J. 2020; 24(5):561-74. doi: https://dx.doi.org/10.1007/s10995-020-02896-5

Chan YH, Lim CZ-R, Bautista D, Malhotra R, Østbye T. The health and well-being of caregivers of technologically dependent children. Glob Pediatr Health. 2019; 6. doi: https://dx.doi.org/10.1177/2333794X18823000

Cady RG, Belew JL. Parent perspective on care coordination services for their child with medical complexity. Children (Basel). 2017; 4(6). doi: https://dx.doi.org/10.3390/children4060045

Mitchell LA, Hirdes J, Poss JW, Slegers-Boyd C, Caldarelli H, Martin L. Informal caregivers of clients with neurological conditions: profiles, patterns and risk factors for distress from a home care prevalence study. BMC Health Serv Res. 2015; 15:350. doi: https://dx.doi.org/10.1186/s12913-015-1010-1



How to Cite

Davis, A. O., Olagbegi, O. M., Orekoya, K. ., Adekunle, M. ., Oyewole, O. O., Adepoju, M. ., & Soetan, O. . (2021). Burden and quality of life of informal caregivers of children with cerebral palsy. Rev Rene, 22, e61752. https://doi.org/10.15253/2175-6783.20212261752



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