Palavras-chave
Cerebral palsy
Informal carers
Quality of life of parents
Emotional well-being
Social support.
Informal carers
Quality of life of parents
Emotional well-being
Social support.
Como Citar
LETOVANCOVÁ, Katarína Molnárová; SLANÁ, Miriam; HROMKOVÁ, Michaela. Emotional well-being and social support as important factors affecting the quality of life of parents of a child with cerebral palsy. 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: 19 abr. 2024.
Resumo
The birth of a child with cerebral palsy is an enormous challenge for the parents which has a direct impact on their quality of life. Therefore, we believe it is important to pay attention to this topic. To that end, we conducted research on the quality of life of parents of children with cerebral palsy in 2018. To achieve our goal, we applied quantitative research strategy and used a valid research tool, i.e. a standardized quality of life questionnaire – Family Quality of Life Scale ("FQOL"). The average score reached by respondents was 94.0918 points which indicates a higher quality of life in respondents than expected. The evaluation of the average score for each dimension of the scale showed that respondents scored the lowest in the "Emotional Well-Being" dimension (13.2551 points) and "Social Support" (15.6429 points). The research further confirmed that there were statistically significant differences in the quality of life of respondents depending on their age (t = -2.341, p = 0.021), marital status (F = 3.476, p = 0.019) and the territorial region (χ2 = 15.39, p = 0.031). A statistically significant relationship between the quality of life of respondents and the age of the child with cerebral palsy (0.288 **, p = 0.004) was confirmed. Despite a relatively high score that indicated a higher quality of life in respondents, the research identified two areas in which parents of children with cerebral palsy had a lower quality of life, namely, their emotional well-being and social support.
Referências
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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.
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