Abstract
The implications of caring for a child with cerebral palsy (CP) are considerable, and parents have to cope with many changing demands related to the specific needs of their child. A new research field, devoted to the consequences of these caring tasks, has recently emerged. However, an overall vision is lacking, one that would enable us to understand how research is evolving and the relevant data that should be taken into account when planning interventions with these families. In this paper, we review the literature on the effects of caregiving on parents of children with CP, and summarize the factors related to these effects. A systematic search of online databases was performed and further studies were identified based on the reference lists of selected articles. Forty six articles that met the inclusion criteria were analysed. The review shows that caregivers of children with CP tend to have high levels of stress and depression and lower quality of life than parents of healthy children. We identify child behaviour and cognitive problems, low caregiver self-efficacy and low social support as factors that are consistently related with higher levels of stress and depression. The implications of these findings are discussed, especially those related to interventions that should be addressed to the family as a whole and which should aim to enhance parents’ competence and resources to better cope with the demands of the caring task.
Similar content being viewed by others
References
Allen, R., & Petr, C. G. (1996). Toward developing standards and measurements for family-centered practice in family support programs. In G. H. S. Singer, L. E. Powers, & A. L. Olson (Eds.), Redefinning family support: innovations in public-private partnerships (pp. 57–86). Baltimore: Brookes.
Amosun, S. L., Ikuesan, B. A., & Oloyede, I. J. (1995). Rehabilitation of the handicapped child. What about the caregiver? Papua New Guinea Medical Journal, 38(3), 208–214.
Baird, G., McConachie, H., & Scrutton, D. (2000). Parents’ perceptions of disclosure of the diagnosis of cerebral palsy. Archives of Disease in Childhood, 83, 475–480.
Barlow, J. H., Cullen-Powell, L. A., & Cheshire, A. (2006). Psychological well-being among mothers of children with cerebral palsy. Early Child Development and Care, 176(3–4), 421–428.
Bauerle, S. (2003). How will internet use affect the patient. A review of computer network and closed Internet-based system studies and the implications in understanding how the use of the internet affects patient populations. Journal of Health Psychology, 8(1), 25–38.
Bella, G. P., Garcia, M. C., & Spadari-Bratfisch, R. C. (2011). Salivary cortisol, stress, and health in primary caregivers (mothers) of children with cerebral palsy. Psychoneuroendocrinology, 36(6), 834–842.
Belsky, J., & Kelly, J. (1994). The transition to parenthood. New York: Delacorte.
Blair, E. (2010). Epidemiology of the Cerebral Palsy. Orthopedic Clinics of North America, 41(4), 441–455.
Blue-Banning, M., Summers, J. A., Frankland, H. C., Nelson, L., & Beegle, G. (2004). Dimensions of family and professional partnerships: constructive guidelines for collaboration. Exceptional Children, 2(70), 167–184.
Bottcher, L. (2010). Children with spastic cerebral palsy, their cognitive functioning, and social participation: a review. Child Neuropsychology, 16(3), 209–228.
Brehaut, J. C., Kohen, D. E., Raina, P., Walter, S. D., Russell, D. J., Swinton, M., O’Donnell, M., et al. (2004). The health of primary caregivers of children with cerebral palsy: how does it compare with that of other Canadian caregivers? Pediatrics, 114(2), e182–e191.
Britner, P. A. (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.
Button, S., Pianta, R. C., & Marvin, R. S. (2001). Partner support and maternal stress in families raising young children with cerebral palsy. Journal of Developmental and Physical Disabilities, 13(1), 61–81.
Byrne, M. B., Hurley, D. A., Daly, L., & Cunningham, C. G. (2010). Health status of caregivers of children with cerebral palsy. Child: Care, Health and Development, 36(5), 696–702.
Cheshire, A., Barlow, J. H., & Powell, L. A. (2010). The psychosocial well-being of parents of children with cerebral palsy: a comparison study. Disability and Rehabilitation, 32(20), 1673–1677.
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.
Cowan, C. P., & Cowan, P. A. (1997). Becoming a parent. In A. S. Skolnick & J. H. Skolnick (Eds.), Family in transition (pp. 201–213). New York: Longman.
Crowe, M., & Sheppard, L. (2011). A review of critical appraisal tools show they lack rigor: alternative tool structure is proposed. Journal of ClinicalEpidemiology, 64(1), 79–89.
Cunningham, C. C. (2000). Familias con niños con Síndrome de Down. In M. A. Verdugo (Ed.), Familias y Discapacidad intelectual (pp. 41–71). Madrid: Feaps.
Dagenais, L., Hall, N., Majnemer, A., Birnbaum, R., Dumas, F., Gosselin, J., Koclas, L., et al. (2006). Communicating a diagnosis of cerebral palsy: caregiver satisfaction and stress. Pediatric Neurology, 35(6), 408–414.
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.
Dellve, L., Samuelsson, L., Tallbonr, A., Fasth, A., & Hallberg, L. R. M. (2005). Stress and wellbeing among parents of children with rare diseases: a prospective intervention study. Journal of Advanced Nursing, 53(4), 392–402.
Dunst, C., Trivette, C. M., & Deal, A. (1988). Enabling and empowering families: principles and guidelines for practice. Cambridge: Brookline Books.
Dunst, C. J., Trivette, C. M., & Hamby, D. W. (2007). Meta-analysis of family-centered help giving practices research. Mental Retardation and Development Disabilities Research Reviews, 13(4), 370–378.
Eisenhower, A. S., Baker, B. L., & Blacher, J. (2005). Preeschool children with intellectual disability: sundrome specificity, behaviour problems and maternal well-being. Journal of Intellectual Disability Research, 49(9), 657–671.
Eker, L., & Tüzün, E. H. (2004). An evaluation of quality of life of mothers of children with cerebral palsy. Disability and Rehabilitation, 26(23), 1354–1359.
Florian, V., & Findler, L. (2001). Mental health and marital adaptation among mothers of children with cerebral palsy. The American Journal of Orthopsychiatry, 71(3), 358–367.
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.
Glasscock, R. (2000). A phenomenological study of the experience of being a mother of a child with cerebral palsy. Paediatric Nursing, 26(4), 407–410.
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.
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, M. A., & Cans, C. (2011). Impact sur les parents de la paralysie cérébrale chez l’enfant: revue de la littérature. Archives de Pédiatrie, 18, 204–214.
Hamzat, T. K., & Mordi, E. L. (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.
Hastings, R. P., Daley, D., Burns, C., & Beck, A. (2006). Maternal distress and expressed emotion: cross-sectional and longitudinal relatioinships with behaviour problems of children with intellectual disabilities. American Journal on Mental Retardation, 1(111), 48–61.
Ho, S. M. Y., Fung, B. K. K., Fung, A. S. M., Chow, S. P., Ip, W. Y., Lee, S. F. Y., Leung, E. Y. P., et al. (2008). Overprotection and the psychological states of cerebral palsy patients and their caretakers in Hong Kong: a preliminary report. Hong Kong Medical Journal = Xianggang Yi XueZaZhi/Hong Kong Academy Of Medicine, 14(4), 286–291.
Huang, Y. (2010). Cerebral palsy: experiences of mothers after learning their child’s diagnosis. Journal of Advanced Nursing, 66(6), 1213.
Huang, Y., 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.
Kaya, K., Unsal-Delialioglu, S., Ordu-Gokkaya, N. K., 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.
Ketelaar, M., Volman, M. J. M., Gorter, J. W., & 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.
Lin, S. (2000). Coping and adaptation in families of children with cerebral palsy. Exceptional Children, 66(2), 201–218.
Magill-Evans, J., Pain, K., Adkins, R., & Kratochvil, M. (2001). Are families with adolescents and young adults with cerebral palsy the same as other families? Developmental Medicine and Child Neurology, 43, 466–472.
Magill-Evans, J., Darrah, J., & Galambos, N. L. (2011). The parenting journey of mothers of young adults with multiple impairments. Journal of Developmental and Physical Disabilities, 23(3), 183–193.
Manuel, J., Naughton, M. J., Balkrishnan, R., Paterson Smith, B., & Koman, L. A. (2003). Stress and adaptation in mothers of children with cerebral palsy. Journal of Pediatric Psychology, 28(3), 197–201.
Mobarak, R., Khan, N. Z., Munir, S., Zaman, S. S., & McConachie, H. (2000). Predictors of stress in mothers of children with cerebral palsy in Bangladesh. Journal of Pediatric Psychology, 25(6), 427–433.
Murray, E., Burns, J., See, T. S., Lai, R., & Nazareth, I. (2004). Interactive health communication applications for people with chronic disease. Cochrane Database System Review, 4, CD004274.
Odding, E., Roebroeck, M. E., & Stam, H. J. (2006). The epidemiology of cerebral palsy: incidence, impairments and risk factors. Disability and Rehabilitation, 28(4), 183–191.
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.
Ong, L. C., Afifah, I., Sofiah, A., & Lye, M. S. (1998). Parenting stress among mothers of Malaysian children with cerebral palsy: predictors of child-and-parent-related-stress. Annals of Tropical Paediatrics, 18(4), 301–307.
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.
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.
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.
Pelchat, D., Levert, M.-J., & Bourgeois-Guérin, V. (2009). How do mothers and fathers who have a child with a disability describe their adaptation/transformation process? Journal of Child Health Care: For Professionals Working With Children In The Hospital And Community, 13(3), 239–259.
Pimm, P. L. (1996). Some of the implications of caring for a child or adult with cerebral palsy. British Journal of Occupational Therapy, 59(7), 335–341.
Prudente, C. O. M., Barbosa, M. A., & Porto, C. C. (2010). Relation between quality of life of mothers of children with cerebral palsy and the children’s motor functioning, after ten months of rehabilitation. Revista Latino-Americana de Enfermagem, 18(2), 149–155.
Raina, P., O’Donnell, M., Rosenbaum, P., Brehaut, J., Walter, S. D., Russell, D., et al. (2005). The health and well-being of caregivers of children with cerebral palsy. Pediatrics, 115(6), e626–e636.
Rentinck, I. C. M., Ketelaar, M., Jongmans, M. J., & Gorter, J. W. (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.
Risdal, D., & Singer, G. H. S. (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.
Rodrigues dos Santos, M. T. B., Bianccardi, M., Celiberti, P., & de Oliveira Guaré, R. (2009). Dental caries in cerebral palsied individuals and their caregivers’ quality of life. Child: Care, Health and Development, 35(4), 475–481.
Rodrigues dos Santos, M. T. B., Biancardi, M., Guare, R. O., & Jardim, J. R. (2010). Caries prevalence in patients with cerebral palsy and the burden of caring for them. Special Care In Dentistry: Official Publication Of The American Association Of Hospital Dentists, The Academy Of Dentistry For The Handicapped, And The American Society For Geriatric Dentistry, 30(5), 206–210.
Romeo, D. M., Cioni, M., Distefano, A., Battaglia, L. R., Costanzo, L., Ricci, D., De Sanctis, R., et al. (2010). Quality of life in parents of children with cerebral palsy: is it influenced by the child’s behaviour? Neuropediatrics, 41(3), 121–126.
Rosenbaum, P., Paneth, N., Leviton, A., Goldstein, M., Bax, M., Damiano, et al. (2007). A report: the definition and classification of cerebral palsy April 2006. Developmental Medicine and Child Neurology, 109(Supplement), 8–14.
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, M. G., Bittman, M., La Greca, A. M., Crettenden, A. D., 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.
Sipal, R. F., Schuengel, C., Voorman, J. M., Van Eck, M., & Becher, J. G. (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.
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.
Smith, T. B., Innocenti, M. S., Boyce, G. C., & Smith, C. S. (1993). Depressive symptomatology and interaction behaviours of mothers having a child with disabilities. Psychological Reports, 73, 1184–1186.
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. doi:10.1093/tropej/fmr077.
Summers, J. A., Marquis, J., Mannan, H., Turnbull, A., Fleming, K., Poston, D., et al. (2007). Relationship of perceiving of adequacy of services, family-profesional partnerships, and family quality of life in early childhood service programs. International Journal of Developmental Disability and Education, 54(3), 319–338.
Svedberg, L. E., Englund, E., Malker, H., & Stener-Victorin, E. (2010). Comparison of impact on mood, health, and daily living experiences of primary caregivers of walking and non-walking children with cerebral palsy and provided community services support. European Journal Of Paediatric Neurology: EJPN: Official Journal of the European Paediatric Neurology Society, 14(3), 239–246.
Terra, V. C., Cysneiros, R. M., Schwartzman, J. S., Teixeira, M. C. T. V., Arida, R. M., Cavalheiro, E. A., Scorza, F. A., et al. (2011). Mothers of children with cerebral palsy with or without epilepsy: a quality of life perspective. Disability and Rehabilitation, 33(5), 384–388.
Trivette, C., Dunst, C. J., Deal, A., & Hamer, W. (1990). Assessing family strenghs and family functioning style. Topics in Early Childhood Special Education, 10(1), 367–385.
Tuna, H., Ünalan, H., Tuna, F., & Kokino, S. (2004). Quality of life of primary caregivers of children with cerebral palsy: a controlled study with short form-36 questionnaire. Developmental Medicine and Child Neurology, 46(09), 647–648.
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, A. P., Turbibville, V., & Turnbull, H. R. (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.
Turnbull, A., Brown, I., & Turnbull, R. (Eds.). (2004). Families and people with mental retardation and quality of life. International perspectives. Washington: AAMR.
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.
Wanamaker, C. E., & Glenwick, D. S. (1998). Stress, coping, and perceptions of child behaviour in parents of preschoolers with cerebral palsy. Rehabilitation Psychology, 43(4), 297–312.
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.
Weiss, J. B., Lorenzi, N. M., & Lorenzi, N. (2008). Synthesizing community wisdom: a model for sharing cancer-related resources through social networking and collaborative partnerships. AMIA Annual Symposium Proceedings, 793–7.
Acknowledgments
This work has been funded by the Spanish Ministry of Science and Technology (PSI2008-01124; Plan Nacional of I + D). Funds were used to pay the translation of the draft.
The authors of this article are members of PSiNET Research Group, which is recognized and supported by the Catalan Government (SGR09-197).
We thank Gerardo Ontiveros for his assistance with the search through the databases.
Author information
Authors and Affiliations
Corresponding author
Rights and permissions
About this article
Cite this article
Pousada, M., Guillamón, N., Hernández-Encuentra, E. et al. Impact of Caring for a Child with Cerebral Palsy on the Quality of Life of Parents: A Systematic Review of the Literature. J Dev Phys Disabil 25, 545–577 (2013). https://doi.org/10.1007/s10882-013-9332-6
Published:
Issue Date:
DOI: https://doi.org/10.1007/s10882-013-9332-6