Impact of Parenting a Child with Cerebral Palsy on the Quality of Life of Parents: A Systematic Review of Literature

Dr. Vivek H Ramanandi, Dr. Trupti Rudra Parmar, Dr. Juhi Kalpesh Panchal, Dr. M M Prabhakar

Abstract


Purpose: The implications of parenting a child with cerebral palsy (CP) are multifaceted, as parents have to cope with their child’s functional limitations and specific needs, and prepare for the possibility of long-term dependence. There has been significant research on the consequences of managing these parenting tasks. This article reviews the literature on the effects of parenting children with CP, and summarises the related factors.

Methods: A systematic search of online databases was conducted and, based on the reference lists of selected articles, further studies were identified. Thirty-six articles that met the inclusion criteria were analysed.

Conclusion & Implication: Parents of children with CP were found to have lower quality of life, associated with high levels of stress and depression, due to factors such as child behaviour and cognitive problems, low caregiver self-efficacy and low social support. The implications of these findings in relation to the planning and development of interventions addressing the family as a whole are discussed. The aim is to enhance parents’ competence and resources so that they are better able to cope with the demands of parenting their children.


Keywords


Cerebral palsy; parenting; care giving; stress; well-being; quality of life

Full Text:

PDF

References


Alaee N, Shahboulaghi FM, Khankeh H, Kermanshahi SMK (2015). Psychosocial challenges for parents of children with cerebral palsy: A qualitative study. Journal of Child and Family Studies; 24(7): 2147-54. https://doi.org/10.1007/s10826-014-0016-3

Allen R, Petr CG (1996). Towards developing standards and measurements for family-centred practice in family support programmes. In: Singer GH, Powers LE, & Olson AL (Eds.), Redefining family support: Innovations in public-private partnerships. Baltimore, Brookes, 57-86.

Barlow JH, Cullen-Powell LA, Cheshire A (2006). Psychological well-being among mothers of children with cerebral palsy. Early Child Development and Care; 176(3-4): 421-428. https://doi.org/10.1080/0300443042000313403

Bax M, Goldstein M, Rosenbaum P, Leviton A, Paneth N, Dan B, Jacobsson B, Damiano D (2005). Proposed definition and classification of cerebral palsy, April 2005. Developmental Medicine & Child Neurology; 47(08): 571-576. https://doi.org/10.1017/S001216220500112X

Blair E (2010). Epidemiology of the Cerebral Palsy. Orthopaedic Clinics of North America; 41(4): 441- 455. https://doi.org/10.1016/j.ocl.2010.06.004. PMid:20868877

Bottcher L (2010). Children with spastic cerebral palsy, their cognitive functioning, and social participation: a review. Child Neuropsychology; 16(3): 209-228. https://doi.org/10.1080/09297040903559630. PMid:20209416

Brehaut JC, Kohen DE, Raina P, Walter SD, Russell DJ, Swinton M, O'Donnell M, Rosenbaum P (2004). The health of primary caregivers of children with cerebral palsy: how does it compare with that of other Canadian caregivers? Paediatrics; 114(2): e182-e191. https://doi.org/10.1542/peds.114.2.e182. PMid:15286255

Britner PA (2003). Stress and coping: a comparison of self-report measures of functioning in families of young children with cerebral palsy or no medical diagnosis. Journal of Child and Family Studies; 12(3): 335-348. https://doi.org/10.1023/A:1023943928358

Byrne MB, Hurley DA, Daly L, Cunningham CG (2010). Health status of caregivers of children with cerebral palsy. Child: Care, Health and Development; 36(5): 696-702. https://doi.org/10.1111/j.1365-2214.2009.01047.x. PMid:20074250

Cheng AL, Kang YK, Chen Z, Tsao CJ, Qin S, Kim JS, Luo R, Feng J, Ye S, Yang T-S, Tak WY, Pan H, Burock K, Zou J, Voliotis D, Guan Z (2009). Efficacy and safety of sorafenib in patients in the Asia-Pacific region with advanced hepatocellular carcinoma: a phase III randomised, double-blind, placebo-controlled trial. The Lancet Oncology; 10(1): 25-34. https://doi.org/10.1016/S1470-2045(08)70285-7

Cheshire A, Barlow JH, Powell LA (2010). The psychosocial well-being of parents of children with cerebral palsy: A comparison study. Disability and Rehabilitation; 32(20): 1673-1677. https://doi.org/10.3109/09638281003649920. PMid:20178413

Colineau N, Paris C (2010). Talking about your health to strangers: understanding the use of online social networks by patients. New Review of Hypermedia and Multimedia; 16(1): 141. https://doi.org/10.1080/13614568.2010.496131

Crowe M, Sheppard L (2011). A review of critical appraisal tools show they lack rigor: alternative tool structure is proposed. Journal of Clinical Epidemiology; 64(1): 79-89. https://doi.org/10.1016/j.jclinepi.2010.02.008. PMid:21130354

Cunningham CC (2000). Familias con niños con Síndrome de Down. In M. A. Verdugo (Ed.), Familias y Discapacidad intellectual, Madrid: Feaps: 41-71.

Davis E, Shelly A, Waters E, Boyd R, Cook K, Davern M (2010). The impact of caring for a child with cerebral palsy: quality of life for mothers and fathers. Child: Care, Health and Development; 36: 63-73. https://doi.org/10.1111/j.1365-2214.2009.00989.x. PMid:19702639

Dellve L, Samuelsson L, Tallbonr A, Fasth A, Hallberg LRM (2005). Stress and wellbeing among parents of children with rare diseases: a prospective intervention study. Journal of Advanced Nursing; 53(4): 392-402. https://doi.org/10.1111/j.1365-2648.2006.03736.x PMid:16448482

Diwan S, Chovatiya H, Diwan J (2011). Depression and quality of life in mothers of children with cerebral palsy. National Journal of Integrated Research in Medicine; 2(4): 11-13.

Dunst C, Trivette CM, Deal A(1988). Enabling and empowering families: principles and guidelines for practice. Cambridge: Brookline Books.

Dunst CJ, Trivette CM, Hamby DW (2007). Meta-analysis of family-centred help giving practices research. Mental Retardation and Development Disabilities Research Reviews; 13(4): 370- 378. https://doi.org/10.1002/mrdd.20176. PMid:17979208

Eisenhower AS, Baker BL, Blacher J (2005). Preschool children with intellectual disability: syndrome specificity, behaviour problems and maternal well-being. Journal of Intellectual Disability Research; 49(9): 657-671. https://doi.org/10.1111/j.1365-2788.2005.00699.x PMid:16108983 PMCid:PMC3072759

Eker L, Tüzün EH (2004). An evaluation of quality of life of mothers of children with cerebral palsy. Disability and Rehabilitation; 26(23): 1354-1359. https://doi.org/10.1080/09638280400000187 PMid:15742980

Fox S (2011). Peer-to-peer healthcare: Many people - especially those living with chronic or rare diseases - use online connections to supplement professional medical advice. Resource document. Washington, DC: The Pew Internet &American Life Project, 28th Feb. http://pewinternet.org/Reports/2011/P2PHealthcare.aspx.

Glenn S, Cunningham C, Poole H, Reeves D, Weindling M (2009). Maternal parenting stress and its correlates in families with a young child with cerebral palsy. Child: Care, Health and Development; 35(1): 71-78. https://doi.org/10.1111/j.1365-2214.2008.00891.x PMid:18991973

Guillamón N, Armayones M, Hernández E, Gómez-Zúñiga B (2010). The role of patient organizations in participatory medicine: can virtual health communities help participatory medicine accomplish its objectives? Journal of Participatory Medicine; 2: e21.

Guyard A, Fauconnier J, Mermet MA, Cans C (2011). Impact sur les parents de la paralysie cérébrale chez l'enfant: revue de la littérature. Archives de Pédiatrie; 18: 204-214. https://doi.org/10.1016/j.arcped.2010.11.008 PMid:21196101

Hamzat TK, Mordi EL (2007). Impact of caring for children with cerebral palsy on the general health of their caregivers in an African community. International Journal of Rehabilitation Research; 30(3): 191-194. https://doi.org/10.1097/MRR.0b013e3281e5af46 PMid:17762763

Hastings RP, Daley D, Burns C, Beck A (2006). Maternal distress and expressed emotion: cross-sectional and longitudinal relationships with behaviour problems of children with intellectual disabilities. American Journal on Mental Retardation; 1(111): 48-61. https://doi.org/10.1352/0895-8017(2006)111[48:MDAEEC]2.0.CO;2

Ho SMY, Fung BKK, Fung ASM, Chow SP, Ip WY, Lee SFY, Leung EYP, Ha KW (2008). Overprotection and the psychological states of cerebral palsy patients and their caretakers in Hong Kong: A preliminary report. Hong Kong Medical Journal; 14(4): 286-291.

HuangY, Kellett U, St John W (2011). Being concerned: Caregiving for Taiwanese mothers of a child with cerebral palsy. Journal of Clinical Nursing; 21(1-2): 189-197. https://doi.org/10.1111/j.1365-2702.2011.03741.x. PMid:21702863

Kaya K, Unsal-Delialioglu S, Ordu-Gokkaya NK, Ozisler Z, Ergun N, Ozel S, Ucan H (2010). Musculo-skeletal pain, quality of life and depression in mothers of children with cerebral palsy. Disability and Rehabilitation; 32(20): 1666-1672. https://doi.org/10.3109/09638281003649912 PMid:20170278

Ketelaar M, Volman MJM, Gorter JW, Vermeer A (2008). Stress in parents of children with cerebral palsy: what sources of stress are we talking about? Child: Care, Health and Development; 34(6): 825-829. https://doi.org/10.1111/j.1365-2214.2008.00876.x PMid:18959579

Krstić T, Mihić L, Mihić I (2015). Stress and resolution in mothers of children with cerebral palsy. Research in Developmental Disabilities; 47: 135-143. https://doi.org/10.1016/j.ridd.2015.09.009 PMid:26421350

Lima MBS, Cardoso VDS, Silva SSDC (2016). Parental stress and social support of caregivers of children with cerebral palsy. Paidéia (Ribeirão Preto); 26(64): 207-214. https://doi.org/10.1590/1982-43272664201608

Magill-Evans J, Darrah J, Galambos NL (2011). The parenting journey of mothers of young adults with multiple impairments. Journal of Developmental and Physical Disabilities; 23(3): 183-193. https://doi.org/10.1007/s10882-010-9214-0

Majnemer A, Shevell M, Law M, Poulin C, Rosenbaum P (2012). Indicators of distress in families of children with cerebral palsy. Disability and Rehabilitation; 34(14): 1202-1207. https://doi.org/10.3109/09638288.2011.638035 PMid:22235883

Manuel J, Naughton MJ, Balkrishnan R, Paterson Smith B, Koman LA (2003). Stress and adaptation in mothers of children with cerebral palsy. Journal of Paediatric Psychology; 28(3): 197-201. https://doi.org/10.1093/jpepsy/jsg007 PMid:12654945

Nimbalkar S, Raithatha S, Shah R, Panchal DA (2014). A qualitative study of psychosocial problems among parents of children with cerebral palsy attending two tertiary care hospitals in western India. ISRN family medicine; 2014. https://doi.org/10.1155/2014/769619 PMid:24967331 PMCid:PMC4041266

Odding E, Roebroeck ME, Stam HJ (2006). The epidemiology of cerebral palsy: incidence, impairments and risk factors. Disability and Rehabilitation; 28(4): 183-191. https://doi.org/10.1080/09638280500158422 PMid:16467053

Okurowska-Zawada B, Kulak W, Wojtkowsku J, Sienkiewicz D, Paszko-Patej G (2011). Quality of life of parents of children with cerebral palsy. Progress in Health Sciences; 1(1): 116-123.

Ones K, Yilmaz E, Cetinkaya B, Caglar N (2005). Assessment of the quality of life of mothers of children with cerebral palsy (primary caregivers). Neurorehabilitation and Neural Repair; 19(3): 232- 237. https://doi.org/10.1177/1545968305278857 PMid:16093414

Palisandro R, Rosenbaum P, Walter S, Russell D, Wood E, Galupi B (1997). Development and reliability of a system to classify gross motor function in children with cerebral palsy. Developmental Medicine and Child Neurology; 39: 214-223. https://doi.org/10.1111/j.1469-8749.1997.tb07414.x

Parkes J, McCullough N, Madden A, McCahey E (2009). The health of children with cerebral palsy and stress in their parents. Journal of Advanced Nursing; 65(11): 2311-2323. https://doi.org/10.1111/j.1365-2648.2009.05089.x PMid:19737327

Parkes J, Caravale B, Marcelli M, Franco F, Colver A (2011). Parenting stress and children with cerebral palsy: A European cross-sectional survey. Developmental Medicine and Child Neurology; 53(9): 815-821. https://doi.org/10.1111/j.1469-8749.2011.04014.x PMid:21707599

Pushpalatha R, Shivakumara K (2016). Stress, burden and coping between caregivers of Cerebral Palsy and Autism children. International Journal of Indian Psychology; 4(1): 2348-5396 (e).

Raina P, O'Donnell M, Rosenbaum P, Brehaut J, Walter SD, Russell D, Swinton M, Wood E (2005). The health and well-being of caregivers of children with cerebral palsy. Paediatrics; 115(6): e626-e36. https://doi.org/10.1542/peds.2004-1689 PMid:15930188

Ramanandi VH, Rao B (2015). Comparison of stress levels in the parents of children with cerebral palsy and parents of normal children in Vadodara region of Gujarat. International Journal of Physiotherapy; 2(2): 421-428. https://doi.org/10.15621/ijphy/2015/v2i2/65252

Rentinck ICM, Ketelaar M, Jongmans MJ, Gorter JW (2007). Parents of children with cerebral palsy: A review of factors related to the process of adaptation. Child: Care, Health and Development; 33(2): 161-167. https://doi.org/10.1111/j.1365-2214.2006.00643.x PMid:17291320

Risdal D, Singer GHS (2004). Marital adjustment in parents of children with disabilities: a historical review and meta-analysis. Research and Practice for Persons with Severe Disabilities; 29(2): 95-103. https://doi.org/10.2511/rpsd.29.2.95

Romeo DM, Cioni M, Distefano A, Battaglia LR, Costanzo L, Ricci D, De Sanctis R, Romeo MG, Mazzone D, Mercuri E (2010). Quality of life in parents of children with cerebral palsy: Is it influenced by the child's behaviour? Neuropaediatrics; 41(3): 121-126. https://doi.org/10.1055/s-0030-1262841 PMid:20859830

Sajedi F, Alizad V, Malekkhosravi G, Karimlou M, Vameghi R (2010). Depression in mothers of children with cerebral palsy and its relation to severity and type of cerebral palsy. Acta Medica Iranica; 48(4): 250-254.

Sawyer MG, Bittman M, La Greca AM, Crettenden AD, Borojevic N, Raghavendra P, Russo R (2011). Time demands of caring for children with cerebral palsy: what are the implications for maternal mental health? Developmental Medicine and Child Neurology; 53(4): 338-343. https://doi.org/10.1111/j.1469-8749.2010.03848.x PMid:21232052

Sipal RF, Schuengel C, Voorman JM, Van Eck M, Becher JG (2010). Course of behaviour problems of children with cerebral palsy: the role of parental stress and support. Child: Care, Health and Development; 36(1): 74-84. https://doi.org/10.1111/j.1365-2214.2009.01004.x PMid:19702640

Skok A, Harvey D, Reddihough D (2006). Perceived stress, perceived social support, and wellbeing among mothers of school-aged children with cerebral palsy. Journal of Intellectual & Developmental Disability; 31(1): 53-57. https://doi.org/10.1080/13668250600561929 PMid:16766323

Ström H, Kreuter M, Rosberg S (2011). Quality of life in parents/caretakers of children with cerebral palsy in Kampong Cham, Cambodia. Journal of Tropical Pediatrics; 58(4): 303-306. https://doi.org/10.1093/tropej/fmr077 PMid:21921106

Trivette C, Dunst CJ, Deal A, Hamer W (1990). Assessing family strengths and family functioning style. Topics in Early Childhood Special Education; 10(1): 367-385. https://doi.org/10.1177/027112149001000103

Turnbull A (2005). La calidad de vida de la familia como resultado de los servicios: el nuevo paradigma. In M. A. Verdugo & F. B. Jordán de Urríes Vega (Eds.), Investigación, innovación y cambio. V Jornadas científicas de investigación sobre personas con discapacidad (pp. 61-82). Salamanca: Amarú Ediciones.

Turnbull AP, Turbibville V, Turnbull HR (2000). Evolution of family-professional partnership collective empowerment as the model for the early twenty-first century. In J. P. Sonkoff & S. J. Meisels (Eds.), Handbook of early childhood intervention. New York: Cambridge University Press.

Unsal-Delialioglu S, Kaya K, Ozel S, Gorgulu G (2009). Depression in Mothers of children with cerebral palsy and related factors in Turkey: a controlled study. International Journal of Rehabilitation Research; 32(3): 199-204. https://doi.org/10.1097/MRR.0b013e32832607b6 PMid:19322102

Wanamaker CE, Glenwick DS (1998). Stress, coping, and perceptions of child behaviour in parents of preschoolers with cerebral palsy. Rehabilitation Psychology; 43(4): 297-312. https://doi.org/10.1037//0090-5550.43.4.297

Wang H, Jong Y (2004). Parental stress and related factors in parents of children with cerebral palsy. The Kaohsiung Journal of Medical Sciences; 20(7): 334-340. https://doi.org/10.1016/S1607-551X(09)70167-6

Wang Y, Huang Z, Kong F (2016). Parenting stress and life satisfaction in mothers of children with cerebral palsy: The mediating effect of social support. Journal of Health Psychology; 1359105317739100. https://doi.org/10.1177/1359105317739100 PMid:29129110




DOI: https://doi.org/10.5463/dcid.v30i1.793



Copyright (c) 2019 Dr. Vivek H. Ramanandi, Dr. Trupti Rudra Parmar, Dr. Juhi Kalpesh Panchal, Dr. M. M. Prabhakar

Creative Commons License
This work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.

Supported by:

netherlandsleprosyrelief_logo_rgb_-_new_logo_2014_120CBMlightfortheworld_logo_rgb_-_new_logo_2014_120     

© Disability, CBR & Inclusive Development