Fatores associados à qualidade de vida dos cuidadores de crianças com transtorno do neurodesenvolvimento
DOI:
https://doi.org/10.70597/vozes.v12i25.1202Keywords:
Quality of life, Caregivers, Neurodevelopmental disorders, Intellectual disability, Autism Spectrum DisorderAbstract
Introduction: Parents and caregivers of children with neurodevelopmental disorders (NDD) can be affected in their well-being by the caregiving experience. Objective: To assess the quality of life (QOL) of caregivers of children with NDD and identify associated factors. Methodology: The functional abilities and gross motor function of ninety-six children with NDD who were followed up at a rehabilitation center were assessed. The respective caregivers answered the Short-Form Health Survey (SF-36) and a structured questionnaire on the sociodemographic profile. The analytical strategy for testing associations was the Generalized Estimating Equations (GEE) model. Results: All the caregivers were mothers and had a mean age of 37.1 years (Standard Deviation [SD]=10.5 years). The physical domain of QoL was associated with poorer child mobility and lower family socioeconomic status. The mental domain of QoL was associated with a greater amount of assistance provided in the social function and the child's better gross motor function in the standing domain. Conclusion: The results suggest that the care of children with NCD should go beyond their individual limitations and include caregivers in the therapeutic process, not only to ensure a good QoL, but also with a view to the quality of care.
References
American Psychiatric Association. Manual diagnóstico e estatístico de transtornos mentais: DSM-5. 5. ed. Porto Alegre: Artmed; 2014.
Ahn, S., & Hwang, S. Cognitive rehabilitation with neurodevelopmental disorder: A systematic review. NeuroRehabilitation. 2017; 41(4): 707-719.
Andrews, G., Pine, D. S., Hobbs, M. J., Anderson, T. M., & Sunderland, M. Neurodevelopmental disorders: Cluster 2 of the proposed meta-structure for DSM-V and ICD-11: Paper 3 of 7 of the thematic section: ‘A proposal for a meta-structure for DSM-V and ICD-11’. Psychological medicine. 2009; 39(12): 2013-2023.
Zablotsky B, Black LI, Maenner MJ, Schieve LA, Danielson ML, Bitsko RH, et al.
Prevalence and trends of developmental disabilities among children in the United States: 2009–2017. Pediatrics. 2019; 144(4):2009–17.
Instituto Brasileiro de Geografia e Estatística (Brasil). Censo Demográfico 2010: Características Gerais da População, Religião e Pessoas Com Deficiência. 2010; 1–215.
Ooi KL, Ong YS, Jacob SA, Khan TM. A meta-synthesis on parenting a child with autism. Neuropsychiatr Dis Treat. 2016;12:745–62.
Gomes PTM, Lima LHL, Bueno MKG, Araújo LA, Souza NM. Autismo no Brasil, desafios familiares e estratégias de superação: revisão sistemática. J Pediatr (Rio J.). 2015; 92(2):111–21.
Yıldız A, Tarakcı D, Hajebrahimi F, Mutluay F. Disabled children’s functionality and maternal quality of life and psychological status. Pediatr Int. 2016; 58(12):1291–6.
Wang Y, Xiao L, Chen R Sen, Chen C, Xun GL, Lu XZ, et al. Social impairment of children with autism spectrum disorder affects parental quality of life in different ways. Psychiatry Res. 2018; 266:168–74.
Khanna R, Madhavan SS, Smith MJ, Patrick JH, Tworek C, Becker-Cottrill B. Assessment of health-related quality of life among primary caregivers of children with Autism Spectrum Disorders. J Autism Dev Disord. 2011; 41(9):1214–27.
Ji B, Zhao I, Turner C, Sun M, Yi R, Tang S. Predictors of health-related quality of life in chinese caregivers of children with autism spectrum disorders: A cross sectional study. Arch Psychiatr Nurs. 2014;28(5):327–32.
Alhazmi A, Petersen R, Donald KA. Quality of life among parents of South African children with autism spectrum disorder. Acta Neuropsychiatr. 2018; 30(4): 226–31.
Aktan O, Orakcı Ş, Durnalı M. Investigation of the relationship between burnout, life satisfaction and quality of life in parents of children with disabilities. European Journal of Special Needs Education. 2020; 35(5), 679-695.
Dalvand, H., Rassafiani, M., & Bagheri, H. Family Centered Approach: A literature review. Modern Rehabilitation. 2014; 8(1):1.
Simeonsson RJ, Pereira S, Scarborough AA. Documenting delay and disability in early development with the WHO-ICF. Psicol Rev da Assoc Port Psicol [Internet]. 2003; 17(1):
–41.
Poletto, M, Koller, SH. Contextos ecológicos: promotores de resiliência, fatores de risco e de proteção. Estudos de Psicologia (Campinas). 2008; 25(3): 405-416.
Seidl EMF, Zannon CML da C. Quality of life and health: conceptual and methodological issues. Cad saúde pública / Ministério da Saúde, Fundação Oswaldo Cruz, Esc Nac Saúde Pública. 2004; 20(2): 580–8.
Whoqol Group. The World Health Organization Quality Of Life Assessment (WHOQOL): Position Paper From The World Health Organization. 1995; 41(10): 1403–9.
Estanieski II, Guarany NR. Qualidade de vida, estresse e desempenho ocupacional de mães cuidadoras de crianças e adolescentes autistas. Rev Ter Ocup da Univ São Paulo. 2015; 26(2): 194.
Kuhlthau K, Payakachat N, Delahaye J, Hurson J, Pyne JM, Kovacs E, et al. Quality of life for parents of children with autism spectrum disorders. Res Autism Spectr Disord [Internet]. 2014;8(10):1339–50.
Mchorney CA, Ware JE, Raczek AE, Care SM, Mar N. The MOS 36-Item Short-Form Health Survey ( SF-36 ): II. Psychometric and Clinical Tests of Validity in Measuring Physical and Mental Health Constructs Stable. Med Care. 1993; 31(3):247–63.
Russel, D.J., Rosembaum, P.L., Lisa, M. W., Avery, L., Cyrillo, L. T., Galvão MC dos S. Medida da Função Motora Grossa (GMFM-66 & GMFM-88): Manual do usuário. São Paulo; 2015.
Russell D, Palisano R, Walter S, Rosenbaum P, Gemus M, Gowland C, et al. Evaluating motor function in children with Down syndrome: validity of the GMFM. Dev Med Child Neurol. 1998;40(10):693–701.
Paicheco R, Matted J Di, Cucolicchio S, Gomes C. Inventário de Avaliação Pediátrica de Incapacidade (PEDI): aplicabilidade no diagnóstico de transtorno invasivo do desenvolvimento e retardo mental. Med Reabilil. 2010;29(2):9–12.
Haley, S., Andrellos. P.J, Coster, W., Haltiwanger, J.T. & Ludlow LH. Pediatric evaluation of disability inventory: development, standartization and administration manual. 1.0. New Engl Med Center. 1992.
Mancini M.C. Inventário de avaliação pediátrica de incapacidade (PEDI). Manual da versão brasileira adaptada. Belo Horiz Ed UFMG. 2005.
Almeida D, Oliveira S. Análise de Fatores sociodemográficos de duplas cuidador-criança/ Adolescente com deficiência: um estudo caso-controle. Rev Bras Ed Esp. 2018;389–406.
Macedo EC, Da Silva LR, Paiva MS, Ramos MNP. Sobrecarga e qualidade de vida de mães de crianças e adolescentes com doença crônica: Revisão integrativa. Rev Lat Am Enfermagem. 2015;23(4):769–77.
AlShatti A, AlKandari D, AlMutairi H, AlEbrahim D, AlMutairi A, AlAnsari D, ... & Ahmed J. Caregivers’ perceptions and experience of caring for persons with Down syndrome in Kuwait: A qualitative study. International Journal of Developmental Disabilities. 2021; 67(5):381-390.
Oliveira I, Poletto M. Vivências emocionais de mães e pais de filhos com deficiência. Rev da SPAGESP. 2015;16(2):102–19.
Marsack CN, Hopp FP, Pruchno R. Informal Support, Health, and Burden among Parents of Adult Children with Autism. Gerontologist. 2019;59(6):1112–21.
Lovell B, Elliot H, Liu CCS, Wetherell MA. Memory failures for everyday tasks in caregivers of children with autism. Res Dev Disabil [Internet]. 2014;35(11):3057–61.
Barros ALO, de Gutierrez GM, Barros AO, Santos MTBR. Quality of life and burden of caregivers of children and adolescents with disabilities. Spec Care Dent. 2019;(May):380– 8.
Alenazi, D. S., Hammad, S. M., and Mohamed AE. Effect of autism on parental quality of life in Arar city, Saudi Arabia. J Fam Community Med. 2020;27(1):15–22.
Miller A, Shen J, Mâsse LC. Child functional characteristics explain child and family outcomes better than diagnosis: Population-based study of children with autism or other neurodevelopmental disorders/disabilities. Heal Reports. 2016;27(6):9–18.
Ingersoll B, Hambrick DZ. The relationship between the broader autism phenotype, child severity, and stress and depression in parents of children with autism spectrum disorders. Res Autism Spectr Disord. 2011;5(1):337–44.
Lu MH, Wang GH, Lei H, Shi ML, Zhu R, Jiang F. Social Support as Mediator and Moderator of the Relationship Between Parenting Stress and Life Satisfaction Among the Chinese Parents of Children with ASD. J Autism Dev Disord [Internet]. 2018;48(4):1181–8.
Gallagher S, Whiteley J. The association between stress and physical health in parents caring for children with intellectual disabilities is moderated by children’s challenging behaviours. J Health Psychol. 2013;18(9):1220–31.
Pozo P, Sarriá E, Brioso A. Family quality of life and psychological well-being in parents of children with autism spectrum disorders: A double ABCX model. J Intellect Disabil Res. 2014;58(5):442–58.
ORGANIZAÇÃO MUNDIAL DE SAÚDE (OMS). CIF: Classificação Internacional de Funcionalidade, Incapacidade e Saúde. EDUSP SP, editor. 2003.
Wang R, Liu Q, Zhang W. Coping, social support, and family quality of life for caregivers of individuals with autism: Meta-analytic structural equation modeling. Personality and Individual Differences. 2022; 186:111351.
Guimarães Pozzato MG, Cianciarullo Minett TS, Masruha MR, Pereira Vilanova LC. Global Functional Performance and Caregiver Assistance in Autism and Asperger Syndrome. Neurosci Med. 2014;05(01):42–8.
Shavers VL. Measurement of socioeconomic status in health disparities research. J Natl Med Assoc. 2007;99(9):1013–23.
Grillo E, Silva RJM da. Manifestações precoces dos transtornos do comportamento na criança e no adolescente. J Pediatr (Rio J). 2004;80(2):21–7.
Currie G, Szabo J. Social isolation and exclusion: the parents’ experience of caring for children with rare neurodevelopmental disorders. Int J Qual Stud Health Well-being [Internet]. 2020;15(1).
Amaral LA. Deficiência: questões conceituais e alguns desdobramentos. Cad Psicol. 1996; 2(1), 3-12.
Lach LM, Kohen DE, Garner RE, Brehaut JC, Miller AR, Klassen AF, et al. The health and psychosocial functioning of caregivers of children with neurodevelopmental disorders. Disabil Rehabil. 2009;31(9):741–52.
Snipstad ØIM. Concerns regarding the use of the vulnerability concept in research on people with intellectual disability. British journal of learning disabilities. 2022; 50(1):107114.
Ritu Raj Gogoi, Ranjan Kumar Deuri SP. Anxiety, depression, and quality of life in mothers of children with intellectual disability. Open J Psychiatry Allied Sci. 2016; 8(1), 71-75.
Larson E. Ever vigilant: Maternal support of participation in daily life for boys with autism. Phys Occup Ther Pediatr. 2010;30(1):16–27.
Hoefman R, Payakachat N, Van Exel J, Kuhlthau K, Kovacs E, Pyne J, et al. Caring for a child with autism spectrum disorder and parents’ quality of life: Application of the CarerQol. J Autism Dev Disord. 2014;44(8):1933–45.
Enkelaar L, Smulders E, van Schrojenstein Lantman-de Valk H, Geurts ACH, Weerdesteyn V. A review of balance and gait capacities in relation to falls in persons with intellectual disability. Res Dev Disabil [Internet]. 2012;33(1):291–306.
Lee LC, Harrington RA, Chang JJ, Connors SL. Increased risk of injury in children with developmental disabilities. Res Dev Disabil. 2008;29(3):247–55.
Scherer N, Verhey I, Kuper H. Depression and anxiety in parents of children with intellectual and developmental disabilities: A systematic review and meta-analysis. PLoS One. 2019;14(7):1–18.
Kheir NM, Ghoneim OM, Sandridge AL, Hayder SA, Al-Ismail MS, Al-Rawi F. Concerns and considerations among caregivers of a child with autism in Qatar. BMC Res Notes. 2012;5:1–7.
Russell DJ, Rosenbaum PL, Cadman DT, Gowland C, Hardy S, Jarvis S. the Gross Motor Function Measure: a Means To Evaluate the Effects of Physical Therapy. Dev Med Child Neurol. 1989;31(3):341–52.
Downloads
Published
How to Cite
Issue
Section
License
This work is licensed under a Creative Commons Attribution 4.0 International License.
A Revista proporciona acesso público - Open Access - a todo seu conteúdo protegidos pela Licença Creative Commons (CC-BY).
