Support for the practices of primary caregivers of children with cerebral palsy
DOI:
https://doi.org/10.34019/1982-1247.2022.v16.30274Keywords:
Family of children with disabilities, Health of caregivers, Social supportAbstract
The present study sought to identify the care practices among primary caregivers of children with cerebral palsy (CP) and the social supports that are made available to them. A sample of 101 caregivers of children aged 0 to 12 years participated. A sociodemographic inventory, the Care Beliefs and Practices Scale (E-CPPC), the Gross Motor Function Classification System (GMFCS) and the Medical Outcomes Study Social Support Survey (MOS) were applied. ANOVA, Chi-square and Pearson correlation tests were used. The sample consisted mostly of mothers, housewives, living on up to two salaries and most of the children were compromised (GMFCS levels IV and V).
Downloads
References
Alaee, N., Shahboulaghi, F. M., Khankeh, H., & Kermanshahi, S. M. K. (2014). Psychosocial challenges for parents of children with cerebral palsy: A qualitative study. Journal of Child and Family Studies, 24, 2147-2154. doi:10.1007/s10826-014-0016-3
Amendola, F., Oliveira, M. A. de C., & Alvarenga, M. R. M. (2011). Influência do apoio social na qualidade de vida do cuidador familiar de pessoas com dependência. Revista da Escola de Enfermagem da USP, 45(4), 884-889. doi:10.1590/S0080-62342011000400013
Anjos, K. F. dos, Boery, R. N. S. de O., Pereira, R., Pedreira, L. C., Vilela, A. B. A., Santos, V. Cruz, & Rosa, D. de O. S. (2015). Associação entre apoio social e qualidade de vida de cuidadores familiares de idosos dependentes. Ciência & Saúde Coletiva, 20(5), 1321-1330. doi:10.1590/1413-81232015205.14192014
Araújo, M. G. de O., Dutra, M. O. M., Freitas, C. C. S. L., Guedes, T. G., Souza, F. S. de., & Baptista, R. S. (2019). Cuidando de quem cuida: qualidade de vida e sobrecarga de mulheres cuidadoras. Revista Brasileira de Enfermagem, 72(3), 728-736. doi:10.1590/0034-7167-2018-0334
Araújo, Y. B., Reichert, A. P. da S., Vasconcelos, M. G. L., & Collet, N. (2013). Fragilidade da rede social de famílias de crianças com doença crônica. Revista Brasileira de Enfermagem, 66(5), 675-681. doi:10.1590/S0034-71672013000500006
Berge, J. M., Patterson, J. M., & Rueter, M. (2006). Marital satisfaction and mental health of couples with children with chronic health conditions. Families, Systems & Health, 24(3), 267-285. doi:10.1037/1091-7527.24.3.267
Costa, E. A., Pinto, N. M. A., Fiúza, A. L. C., & Pereira, E. T. (2013). Paralisia cerebral e cuidado: O que muda na vida de quem cuida?. Oikos: Família e Sociedade em Debate, 24(1), 236-264. Recuperado de https://locus.ufv.br//handle/123456789/13888
Cunningham, S. D., Warschausky, S., & Thomas, P. D. (2009). Parenting and social functioning of children with and without cerebral palsy. Rehabilitation Psychology, 54(1), 109-115. doi:10.1037 / a0014748
Cury, V. C. R., & Brandão, M. de B. (2011). Reabilitação em paralisia cerebral. Rio de Janeiro: MedBook.
Families Special Interest Research Group of IASSIDD. (2014). Families supporting a child with intellectual or developmental disabilities: The current state of knowledge. Journal of Applied Research in Intellectual Disabilities, 27(5), 420-430. doi:10.1111/jar.12078
Gallagher, S., & Whiteley, J. (2012). Social support is associated with blood pressure responses in parents caring for children with development disabilities. Research in Developmental Disabilities, 33, 2099-2105. doi:10.1016/j.ridd.2012.06.007.
Gibbs, V. A., Aeby, V. & Carpenter-Aeby, T. (2018). The effects of chronically-ill children on family subsystems. International. Journal of Current Research in Life Sciences, 7(12), 2872-2879. Recuperado de http://journalijcrls.com/sites/default/files/issues-pdf/01690.pdf
Guillamón, N., Nieto, R., Pousada, M., Rdelar, D., Muñoz, E., Hernández, E., . . . , & Gómez-Zúñiga, B. (2013). Quality of life and mental health among parents of children with cerebral palsy: the influence of self-efficacy and coping strategies. Journal of Clinical Nursing, 22, 1579-1590. doi:10.1111/jocn.12124
Harkness, S., & Super, C. M. (Eds.). (1996). Parents' cultural belief systems: Their origins, expressions, and consequences. New York: Guilford Press.
Huang, Y-P., Kellett, U. M., & St John, W. (2012). Being concerned: Caregiving for Taiwanese mothers of a child with cerebral palsy. Journal of Clinical Nursing, 21, 189-197. doi:10.1111/j.1365-2702.2011.03741.x
Keller, H. (2002). Development as the interface between biology and culture: A conceptualization of early ontogenetic experiences. In H. Keller, Y. H. Poortinga, & A. Schöolmerich (Eds.). Between culture and biology: Perspectives on ontogenetic development (pp. 215-235). Cambridge: Cambridge Press University.
Keller, H. (2007). Cultures of Infancy, NJ: Erlbaum.
Keller, H. (2009). The expression of positive emotions during early childhood. Anais do I Simpósio Internacional de Psicologia Evolucionista no Milênio: Plasticidade e Adaptação. Natal, Rio Grande do Norte, Brasil.
Keller, H. (2014). Introduction: Understanding relationships—What we would need to know to conceptualize attachment as the cultural solution of a universal developmental task. In H. Otto & H. Keller (Eds.), Different faces of attachment: Cultural variations on a universal human need (pp. 1-24). Cambridge, UK: Cambridge University Press.
Kyzar, K. B., Turnbull, A. P., Summers, J. A., & Gómez, V. A. (2012). The relationship of family support to family outcomes: A synthesis of key findings from research on severe disability. Research and Practice for Persons with Severe Disabilities, 37(1), 31-44. doi:10.2511/027494812800903247
Leiter, V. (2004). Dilemmas in sharing care: maternal provision of professionally driven therapy for children with disabilities. Social Science & Medicine, 58(4), 837-849. doi:10.1016/S0277-9536(03)00258-2
Lopes, C. R. M., Ramos del Rio, B., Rendón, M. T. R., González, L. D. M., & López, C. G. F. (2012). Carga y dependencia em cuidadores primarios informales de pacientes com parálisis infantil severa. Psicologia y Salud, 22(2), 275-282. doi:10.25009/pys.v22i2.551
Mann, J. (1992). Nurturance or negligence: Maternal psychology and behavioral preference among preterm twins. In J. H., Barkow, L. Cosmides, & J. Tooby (Eds.) The adapted mind: Evolutionary psychology and the generation of culture (pp.367-390). New York: Oxford Press University.
Marey-Sarwan, I., Keller, H., & Otto, H. (2015). Stay close to me: Stranger anxiety and maternal beliefs bout children’s socio-emotional development among bedouins in the unrecognized villages in the Naqab. Journal of Cross-Cultural Psychology, 47 (3), 1-14. doi:10.1177/0022022115619231.
Martins, G. D. F., Macarini, S. M., Vieira, M. L., Seidl-de-Moura, M. L., Bussab, V. S. R., & Cruz, R. M. (2010). Construção e validação da Escala de Crenças Parentais e Práticas de Cuidado (E-CPPC) na primeira infância. Psico-USF, 15(1), 23-34. doi:10.1590/S1413-82712010000100004
Miura, R. T., & Petean, E. B. L. (2012). Paralisia cerebral grave: O impacto na qualidade de vida de mães cuidadoras. Mudanças – Psicologia da Saúde, 20(1-2), 7-12. doi:10.15603/2176-1019/mud.v20n1-2p7-12.
Nogueira, P. C., Rabeh, S. A., Caliri, M. H. & Dantas, R. A. (2016) Health-related quality of life among caregivers of individuals with spinal cord injury. Journal of Neuroscience Nursing, 48(1), 28-34. doi:10.1097/JNN.0000000000000177.
Palisano, R., Rosenbaum, P., Walter, S., Russell, D., Wood, E., & Galuppi, B. (1997). Development and validation of a gross motor function classification system for children with cerebral palsy. Developmental Medicine and Child Neurology, 39, 214–223. doi:10.1111/j.1469-8749.1997.tb07414.x
Pousada, M., Guillamón, N., Hernández-Encuentra, E., Muñoz, E., Redolar, D., Boixadós, M., & Gómez-Zúñiga, B. (2013). Impact of caring for a child with cerebral palsy on the quality of life of parents: A systematic review of the literature. Journal of Developmental and Physical Disabilities, 25(5), 545-577. doi:10.1007/s10882-013-9332-6
Rogoff, B. (2005). A natureza cultural do Desenvolvimento Humano. (R. C. Costa, Trad.). Porto Alegre: Artmed.
Santos, B. A., Milbrath, V. M., Freitag, V. L., Gabatz, R. I. B., & Vaz, J. C. (2019). Social support network for the family of cerebral palsy bearing children /Rede de apoio social à família da criança com paralisia cerebral. Revista de Pesquisa: Cuidado é Fundamental, 11(5),1300-1306. doi:10.9789/2175-5361.2019.v11i5.1300-1306
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 & Child Neurology, 53, 338–343. doi:10.1111/j.1469-8749.2010.03848.x
Silva, S. S. C., & Pontes, F. A. R. (2016). Rotina de famílias de crianças com paralisia cerebral. Educar em Revista, 32(59), 65-78. doi:10.1590/0104-4060.44688
Silveira, C. L., Budó, M. de L. D., Ressel, L. B., Oliveira, S. G., & Simon, B. S. (2012) Apoio social como possibilidade de sobrevivência: Percepção de cuidadores familiares em uma comunidade remanescente de quilombos. Ciência Cuidado e Saúde, 10(3), 585-592. doi:10.4025/cienccuidsaude.v10i3.17190
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, 74–84. doi:10.1111/j.1365-2214.2009.01004.x
Smeha, L. N., Abaid, J. L. W., Martins, J. S., Weber, A. S., Fontoura, N. M., & Castagna, L. (2017). Cuidando de um filho com diagnóstico de paralisia cerebral: Sentimentos e expectativas. Psicologia em Estudo, 22(2), 231-242. doi:10.4025/psicolestud.v22i2.32584
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, 239–246. doi:10.1016/j.ejpn.2009.07.001
Thurston, S., Paul, L., Loney, P., Ye, C., Wong, M., & Browne, G. (2011). Associations and costs of parental symptoms of psychiatric distress in a multi-diagnosis group of children with special needs. Journal of Intellectual Disability Research, 55(3), 263–280. doi:10.1111/j.1365-2788.2010.01356.x
Zanini, D. S., Verolla-Moura, A., & Queiroz, I. P. de A. R. (2009). Apoio social: Aspectos da validade de constructo em estudantes universitários. Psicologia em Estudo, 14(1),195-202. doi:10.1590/S1413-73722009000100023
