Keywords
Paralisia-cerebral
Qualidade de vida dos pais
Bem-estar emocional
Suporte social.
Qualidade de vida dos pais
Bem-estar emocional
Suporte social.
How to Cite
LETOVANCOVÁ, Katarína Molnárová; SLANÁ, Miriam; HROMKOVÁ, Michaela. Bem-estar emocional e apoio social como fatores importantes que afetam a qualidade de vida de pais de crianças com paralisia cerebral. Serviço Social e Saúde, Campinas, SP, v. 18, p. e019002, 2019. DOI: 10.20396/sss.v18i0.8656805. Disponível em: https://periodicos.sbu.unicamp.br/ojs/index.php/sss/article/view/8656805. Acesso em: 6 jul. 2024.
Abstract
O nascimento de uma criança com paralisia cerebral é um enorme desafio para os pais que tem um impacto direto sobre a sua qualidade de vida. Portanto, acreditamos que é importante prestar atenção a este tópico. Para tanto, realizamos pesquisas sobre a qualidade de vida de pais de crianças com paralisia cerebral em 2018. Para atingir nosso objetivo, aplicamos uma estratégia de pesquisa quantitativa e utilizamos uma ferramenta de pesquisa válida, ou seja, um questionário padronizado de qualidade de vida - Family Quality of Life Scale ("FQOL"). A pontuação média alcançada pelos entrevistados foi de 94,0918 pontos, o que indica uma maior qualidade de vida nos entrevistados do que o esperado. A avaliação da pontuação média para cada dimensão da escala mostrou que os entrevistados obtiveram menor pontuação na dimensão "bem-estar emocional" (13.2551 pontos) e "Apoio Social" (15.6429 pontos). A pesquisa confirmou ainda que houve diferenças estatisticamente significantes na qualidade de vida dos entrevistados em função de sua idade (t = -2,341, p = 0,021), estado civil (F = 3,476, p = 0,019) e região territorial (χ2 = 15,39, p = 0,031). Foi confirmada uma relação estatisticamente significativa entre a qualidade de vida dos entrevistados e a idade da criança com paralisia cerebral (0,288 **, p = 0,004). Apesar de uma pontuação relativamente alta indicando uma maior qualidade de vida nos entrevistados, a pesquisa identificou duas áreas em que pais de crianças com paralisia cerebral apresentaram uma qualidade de vida menor, a saber, seu bem-estar emocional e apoio social.
References
BAKER, B. L., MCINTYRE, L. L., BLACHER, J. et al. Pre-school children with and without developmental delay: behavior problems and parenting stress over time. Journal of Intellectual Disability Research, 2003, v. 47, p. 217-230.
BENSON, P. R. The impact of child symptom severity on depressed mood among parents of children with ASD: The mediating role of stress proliferation. Journal of Autism and Developmental Disorders, 2006, v. 36, p. 685-695.
BRITNER, P. A., MOROG, M. C., PIANTA, R. C. et al. 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. 2003, v. 12, p. 335-348.
BROWN, I. R., MACADAM-CRISP, J., WANG, M. et al. (2006). Family quality of life when there is a child with a developmental disability. Journal of Policy and Practice in Intellectual Disabilities, 2006, 3 (4), p. 238–245.
BUTCHER, P. R.; WIND, T.; BOUMA, A. Parenting stress in mothers and fathers of a child with hemiparesis: sources of stress, intervening factors and long-term expressions of stress. Child: Care, Health and Development. 2008, v. 34, p. 530-541.
COOPER, E. In my opinion…helping parents cope with the reality of parenting a child with a disabling condition. Children's Health Care. 1991, v. 20, p. 189-190.
COWEN, P. S; REED, D. A. Effects of respite care for children with developmental disabilities: evaluation of an intervention for at risk families. Public Health Nursing, 2002, 19 (4), p. 272-283.
DAVIS, E., SHELLY, A., WATERS, E. The impact of caring for a child with cerebral palsy: quality of life for mothers and fathers. Child: Care, Health and Development, 2009, 36 (1), p. 63-73.
ELLIS, N., UPTON, D., THOMPSON, P. Epilepsy and the family: a review of current literature. European journal of epilepsy (Seizure). 2000, 9 (1), p. 22-30.
ELMSTAHL, S., MALMBERG, B., ANNERSTEDT, L. Caregiver's burden of patients 3 years after stroke assessed by a novel caregiver burden scale. Archives of Physical Medicine and Rehabilitation. 1996, 77, p. 177-182.
GLENN, S., CUNNINGHAM, C., POOLE, H., et al. (2008). Maternal parenting stress and its correlates in families with a young child with cerebral palsy. Child: Care, Health and Development, 2008, 35 (1), p. 71–78.
CHESHIRE, A., BARLOW, J. H., POWELL, L. A. The psychosocial well-being of parents of children with cerebral palsy: a comparison study. Disability and Rehabilitation. 2010, 32 (20), p. 1673-1677.
JUHÁSOVÁ, A. (2015). Comparison of quality of life of families with children with disability and families with children without disability. Procedia-Social and Behavioral Sciences. 2015, v. 174, p. 3378-3384.
KOTZAMPOPOULOU, I. (2015). Quality of life in families having children with disabilities: the parents’ perspective (thesis). Oslo: University in Oslo. 2015.
KOUČOVÁ, J., SIKOROVÁ, L. (2014). Dopady tělesného postižení dítěte na psychickou pohodu rodičů. Ošetrovateľstvo. Teória – výskum – vzdelávanie, 2014, v. 4 (1), p. 26-32.
LEUNG, S. Y. C, LI-TSANG, P. W. C. (2003). Quality of life of parents who have children with disabilities. Hong Kong Journal of Occupational Therapy, 2013, v. 13 (1), 19-24.
MOBARAK, R. Predictors of stress in mothers of children with cerebral palsy in Bangladesh. Journal of Pediatric Psychology. 2000, v. 25 (6), p. 427-433.
NICHD Early Child Care Research Network. Child-Care Structure → Process → Outcome: Direct and Indirect Effects of Child-Care Quality on Young Children's Development. Psychological Science. 2002, v. 13 (3). p. 199-206
OKUROWSKA–ZAWADA, B., KUŁAK, W., WOJTKOWSKI, J. et al. Quality of life of parents of children with cerebral palsy. Progress in Health Sciences, 2011, v. 1 (1), p. 116-123.
OLAWALE, A. O., DEIH, N. A., YAADAR, K. K. R. Psychological impact of cerebral palsy on families: the African perspective. Journal of Neurosciences in Rural Practice. 2013, 4 (2), p. 159-163.
ONES, K., YILMAZ, E., CETINKAYA, B. et al. Assessment of the quality of life of mothers of children with cerebral palsy (primary caregivers). Neurorehabilitation and Neural Repair. 2005, 19 (3), p. 232-237.
PARKES, J., CARAVALE, B., MARCELLI, M. et al. Parenting stress and children with cerebral palsy: a European cross-sectional survey. Developmental Medicine & Child Neurology. 2011, 53 (9), p. 815-821.
PETALAS, M. A., HASTINGS, R. R., NASH, S. et al. (2009). Emotional and behavioral adjustment in siblings of children with intellectual disability with and without autism. Autism, 2009, 13 (5), p. 471-483.
POUSADA, M., GUILLAMÓN, N., ENCUENTRA, H. E. et al. (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, 2013, v. 25 (5), p. 545-577.
RAINA, P., O’DONNELL, M., ROSENBAUM, P. et al. The health and well-being of caregivers of children with cerebral palsy. Pediatrics. 2005, v. 115, p. 626-636.
RAO, R. A., BEIDEL, D. G. (2009). The impact of children with high-functioning autism on parental stress, sibling adjustment, and family functioning. Behavior Modification. 2009, v. 33 (4), p. 437-451.
ROMEO, D. M., CIONI, M., DISTEFANO, A. et al. Quality of life in parents of children with cerebral palsy: is it influenced by the child's behavior? Neuropediatrics, 2010, v. 41 (3), p. 121-126.
SKOK, A., HARVEY, D., REDDIHOUGH, D. Perceived stress, perceived social support, and wellbeing among mothers of school-aged children with cerebral palsy. Journal of Intellectual and Developmental Disability. 2006, v. 31, p. 53-57.
SLANÁ, M., HROMKOVÁ, M., MOLNÁROVÁ LETOVANCOVÁ, K. Včasná intervencia. Vývoj, súčasný stav a teoretické východiská. Trnava: Váry s.r.o, 2017.
SMITH, B. T., OLIVER, N. M., INNOCENTI, S. M. Parenting stress in families of children with disabilities. American Journal of Orthopsychiatry. 2001, v. 71, p. 257-261.
VIJESH, P. V., SUKUMARAN, P. S. (2007). Stress among mothers of children with Cerebral Palsy attending special schools. Asia Pacific Disability Rehabilitation Journal, 2007, v. 18 (1), p. 76-92.
WANG, H. Y., JONG Y. J. Parental stress and related factors in parents of children with cerebral palsy. Kaohsiung Journal of Medical Sciences, 2004, v. 20, p. 334-340.
WARFIELD, M. E., KRAUSS, M. W., HAUSER-CRAM, P. et al. (1999). Adaptation during early childhood among others of children with disabilities. Journal of Developmental & Behavioral Pediatrics. 1999, v. 20, p. 9-16.
WERNER, S., EDWARDS, M., BAUM, N. et al. (2009). Family quality of life among families with a member who has an intellectual disability: an exploratory examination of key domains and dimensions of the revised FQOL Survey. Journal of Intellectual Disability Research, 2009, v. 53 (6), p. 501-511.
BENSON, P. R. The impact of child symptom severity on depressed mood among parents of children with ASD: The mediating role of stress proliferation. Journal of Autism and Developmental Disorders, 2006, v. 36, p. 685-695.
BRITNER, P. A., MOROG, M. C., PIANTA, R. C. et al. 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. 2003, v. 12, p. 335-348.
BROWN, I. R., MACADAM-CRISP, J., WANG, M. et al. (2006). Family quality of life when there is a child with a developmental disability. Journal of Policy and Practice in Intellectual Disabilities, 2006, 3 (4), p. 238–245.
BUTCHER, P. R.; WIND, T.; BOUMA, A. Parenting stress in mothers and fathers of a child with hemiparesis: sources of stress, intervening factors and long-term expressions of stress. Child: Care, Health and Development. 2008, v. 34, p. 530-541.
COOPER, E. In my opinion…helping parents cope with the reality of parenting a child with a disabling condition. Children's Health Care. 1991, v. 20, p. 189-190.
COWEN, P. S; REED, D. A. Effects of respite care for children with developmental disabilities: evaluation of an intervention for at risk families. Public Health Nursing, 2002, 19 (4), p. 272-283.
DAVIS, E., SHELLY, A., WATERS, E. The impact of caring for a child with cerebral palsy: quality of life for mothers and fathers. Child: Care, Health and Development, 2009, 36 (1), p. 63-73.
ELLIS, N., UPTON, D., THOMPSON, P. Epilepsy and the family: a review of current literature. European journal of epilepsy (Seizure). 2000, 9 (1), p. 22-30.
ELMSTAHL, S., MALMBERG, B., ANNERSTEDT, L. Caregiver's burden of patients 3 years after stroke assessed by a novel caregiver burden scale. Archives of Physical Medicine and Rehabilitation. 1996, 77, p. 177-182.
GLENN, S., CUNNINGHAM, C., POOLE, H., et al. (2008). Maternal parenting stress and its correlates in families with a young child with cerebral palsy. Child: Care, Health and Development, 2008, 35 (1), p. 71–78.
CHESHIRE, A., BARLOW, J. H., POWELL, L. A. The psychosocial well-being of parents of children with cerebral palsy: a comparison study. Disability and Rehabilitation. 2010, 32 (20), p. 1673-1677.
JUHÁSOVÁ, A. (2015). Comparison of quality of life of families with children with disability and families with children without disability. Procedia-Social and Behavioral Sciences. 2015, v. 174, p. 3378-3384.
KOTZAMPOPOULOU, I. (2015). Quality of life in families having children with disabilities: the parents’ perspective (thesis). Oslo: University in Oslo. 2015.
KOUČOVÁ, J., SIKOROVÁ, L. (2014). Dopady tělesného postižení dítěte na psychickou pohodu rodičů. Ošetrovateľstvo. Teória – výskum – vzdelávanie, 2014, v. 4 (1), p. 26-32.
LEUNG, S. Y. C, LI-TSANG, P. W. C. (2003). Quality of life of parents who have children with disabilities. Hong Kong Journal of Occupational Therapy, 2013, v. 13 (1), 19-24.
MOBARAK, R. Predictors of stress in mothers of children with cerebral palsy in Bangladesh. Journal of Pediatric Psychology. 2000, v. 25 (6), p. 427-433.
NICHD Early Child Care Research Network. Child-Care Structure → Process → Outcome: Direct and Indirect Effects of Child-Care Quality on Young Children's Development. Psychological Science. 2002, v. 13 (3). p. 199-206
OKUROWSKA–ZAWADA, B., KUŁAK, W., WOJTKOWSKI, J. et al. Quality of life of parents of children with cerebral palsy. Progress in Health Sciences, 2011, v. 1 (1), p. 116-123.
OLAWALE, A. O., DEIH, N. A., YAADAR, K. K. R. Psychological impact of cerebral palsy on families: the African perspective. Journal of Neurosciences in Rural Practice. 2013, 4 (2), p. 159-163.
ONES, K., YILMAZ, E., CETINKAYA, B. et al. Assessment of the quality of life of mothers of children with cerebral palsy (primary caregivers). Neurorehabilitation and Neural Repair. 2005, 19 (3), p. 232-237.
PARKES, J., CARAVALE, B., MARCELLI, M. et al. Parenting stress and children with cerebral palsy: a European cross-sectional survey. Developmental Medicine & Child Neurology. 2011, 53 (9), p. 815-821.
PETALAS, M. A., HASTINGS, R. R., NASH, S. et al. (2009). Emotional and behavioral adjustment in siblings of children with intellectual disability with and without autism. Autism, 2009, 13 (5), p. 471-483.
POUSADA, M., GUILLAMÓN, N., ENCUENTRA, H. E. et al. (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, 2013, v. 25 (5), p. 545-577.
RAINA, P., O’DONNELL, M., ROSENBAUM, P. et al. The health and well-being of caregivers of children with cerebral palsy. Pediatrics. 2005, v. 115, p. 626-636.
RAO, R. A., BEIDEL, D. G. (2009). The impact of children with high-functioning autism on parental stress, sibling adjustment, and family functioning. Behavior Modification. 2009, v. 33 (4), p. 437-451.
ROMEO, D. M., CIONI, M., DISTEFANO, A. et al. Quality of life in parents of children with cerebral palsy: is it influenced by the child's behavior? Neuropediatrics, 2010, v. 41 (3), p. 121-126.
SKOK, A., HARVEY, D., REDDIHOUGH, D. Perceived stress, perceived social support, and wellbeing among mothers of school-aged children with cerebral palsy. Journal of Intellectual and Developmental Disability. 2006, v. 31, p. 53-57.
SLANÁ, M., HROMKOVÁ, M., MOLNÁROVÁ LETOVANCOVÁ, K. Včasná intervencia. Vývoj, súčasný stav a teoretické východiská. Trnava: Váry s.r.o, 2017.
SMITH, B. T., OLIVER, N. M., INNOCENTI, S. M. Parenting stress in families of children with disabilities. American Journal of Orthopsychiatry. 2001, v. 71, p. 257-261.
VIJESH, P. V., SUKUMARAN, P. S. (2007). Stress among mothers of children with Cerebral Palsy attending special schools. Asia Pacific Disability Rehabilitation Journal, 2007, v. 18 (1), p. 76-92.
WANG, H. Y., JONG Y. J. Parental stress and related factors in parents of children with cerebral palsy. Kaohsiung Journal of Medical Sciences, 2004, v. 20, p. 334-340.
WARFIELD, M. E., KRAUSS, M. W., HAUSER-CRAM, P. et al. (1999). Adaptation during early childhood among others of children with disabilities. Journal of Developmental & Behavioral Pediatrics. 1999, v. 20, p. 9-16.
WERNER, S., EDWARDS, M., BAUM, N. et al. (2009). Family quality of life among families with a member who has an intellectual disability: an exploratory examination of key domains and dimensions of the revised FQOL Survey. Journal of Intellectual Disability Research, 2009, v. 53 (6), p. 501-511.
A Serviço Social e Saúde utiliza a licença do Creative Commons (CC), preservando assim, a integridade dos artigos em ambiente de acesso aberto.
Downloads
Download data is not yet available.
