Transformations in the family system after the birth of a child with disability
DOI:
https://doi.org/10.1590/1982-4327e3124Keywords:
Family, People with disabilities, DiagnosisAbstract
The arrival of a child with disability causes changes in the family structure and dynamics. The objective of this study was to identify the parents’ reactions after the transmission of the diagnosis of disability of their child and its repercussions on the family. A semi-structured interview was carried out with three couples with a child, which identified the profile and the transformations in the family system. The data analysis, with the aid of the IRaMuTeQ program (lexographic analysis and Descending Hierarchical Classification), resulted in the classs/categories: birth and mourning, pregnancy and care, routine and overload, spirituality and intrafamily relationships. The transformations in the family dynamics provoked feelings of mourning, overload of the couples, the need for a support network and, in some cases, the connection with spirituality. In conclusion, there is a need for interprofessional and intersectoral research in view of the communication of the diagnosis and the changes throughout the life of the family.
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References
Bowlby, J. (1990). Apego e perda: Vol. 1. Apego: A natureza do vínculo Attachment and loss: Vol. 1. Attachment: The nature of the bond (A. Cabral, Trans.). São Paulo, SP: Martins Fontes.
Bucher-Maluschke, J. S. N. F. (2007). Lei, transgressões, famílias e instituições: Elementos para uma reflexão sistêmica Law, transgressions, families and intitutions: Elements for a systemic reflection. Psicologia: Teoria e Pesquisa, 23(Spe), 83-87. doi:10.1590/S0102-37722007000500016
Bucher-Maluschke, J. S. N. F., & Parreira, C. M. S. F. (2017). Família e deficiência no contexto contemporâneo Family and disability in the contemporary context. In E. M. Bernardi, E. Fernandes Neto, & J. R. Pilger (Orgs.), Documento norteador: Autogestão, autodefensoria e família: Orientações para o trabalho com as famílias no contexto da Rede Apae Guiding document: Self-management, self-defense and family: Guidelines for working with families in the context of the Apae Network (pp. 20-31). Brasília, DF: APAE Brasil. Retrieved from https://media.apaebrasil.org.br/DOCUMENTO-NORTEADOR-FAMILIA-FINAL-3.pdf
Carcreff, L., Gerber, C. N., Paraschiv-Ionescu, A., De Coulon, G., Newman, C. J., Aminian, K., & Armand, S. (2020). Comparison of gait characteristics between clinical and daily life settings in children with cerebral palsy. Scientific Reports, 10(1), 2091. doi:10.1038/s41598-020-59002-6
Cerqueira-Silva, S., & Dessen, M. A. (2018). Programas de Educação Familiar para famílias de crianças com deficiência: Uma proposta promissora Family Education Programs for families of children with disabilities: A promising proposal. Contextos Clínicos, 11(1), 59-71. doi:10.4013/ctc.2018.111.05
Creswell, J. W. (2013). Qualitative inquiry research design: Choosing among five approaches (4th ed.). New York, NY: SAGE.
Fiamenghi Junior, G. A., & Messa, A. A. (2007). Pais, filhos e deficiência: Estudos sobre as relações familiares Parents of children and disability: Studies on family relationships. Psicologia: Ciência e Profissão, 27(2), 236-245. doi:10.1590/s1414-98932007000200006
Harvey, C. (2020). The uncanny effect of disability: Uncomfortable maternal love for a disabled child. Contemporary Psychoanalysis, 56(1), 1-28. doi:10.1080/00107530.2020.1717218
Kaslow, F. W. (2001). Families and family psychology at the millennium: Intersecting crossroads. American Psychologist, 56(1), 37-46. doi:10.1037/0003-066X.56.1.37
Mandleco, B., & Webb, A. E. M. (2015). Sibling perceptions of living with a young person with Down syndrome or autism spectrum disorder: An integrated review. Journal for Specialists in Pediatric Nursing, 20(3), 138-156. doi:10.1111/jspn.12117
Marquis, S. M., McGrail, K., & Hayes, M. V. (2020). Mental health outcomes among parents of a child who has a developmental disability: Comparing different types of developmental disability. Disability and Health Journal, 13(2), 100874. doi:10.1016/j.dhjo.2019.100874
McKechnie, A. C., Rogstad, J., Martin, K. M., & Pridham, K. F. (2018). An exploration of co-parenting in the context of caring for a child prenatally diagnosed and born with a complex health condition. Journal of Advanced Nursing, 74(2), 350-363. doi:10.1111/jan.13415
Namkung, E. H., Mitra, M., & Nicholson, J. (2019). Do disability, parenthood, and gender matter for health disparities?: A US population-based study. Disability and Health Journal, 12(4), 594-601. doi:10.1016/j.dhjo.2019.06.001
Oliveira, I. G., & Polleto, M. (2015). Vivências emocionais de mães e pais de filhos com deficiência Emotional experiences of mothers and fathers of children with disabilities. Revista da SPAGESP, 16(2), 102-119. Retrieved from http://pepsic.bvsalud.org/scielo.php?script=sci_arttext&pid=S1677-29702015000200009
Ortiz-Quiroga, D., Ariza-Araújo, Y., Pachajoa, H., & Ramirez-Botero, A. F. (2018). Intimidación escolar en niños y adolescentes con discapacidad como resultado de mielomeningocele School bullying in children and adolescents with disabilities as a result of myelomeningocele. Rehabilitación, 52(2), 93-99. doi:10.1016/j.rh.2017.11.004
Ratinaud, P. (2009). IRAMUTEQ: Interface de R pour les analyses multidimensionnelles de textes et de questionnaires IRAMUTEQ: R interface for multidimensional analysis of texrts and questionnaires. Retrieved from http://www.iramuteq.org
Reinert, M. (1990). Alceste une méthodologie d’analyse des données textuelles et une application: Aurelia De Gerard De Nerval Alceste a methodology for analyzing textual data and an application: Aurelia De Gerard De Nerval. Bulletin de Méthodologie Sociologique, 26(1), 24-54. doi:10.1177/075910639002600103
Silva, C. C. B., & Ramos, L. Z. (2014). Reações dos familiares frente à descoberta da deficiência dos filhos Reactions of two family members to the discovery of their children’s disability. Cadernos de Terapia Ocupacional da UFSCar, 22(1), 15-23. doi:10.4322/cto.2014.003
Syed, I. H., Awan, W. A., & Syeda, U. B. (2020). Caregiver burden among parents of hearing impaired and intellectually disabled children in Pakistan. Iranian Journal of Public Health, 49(2), 249-256. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7231703/
United Nations Convention on the Rights of the Child. (2015). Concluding observations on the combined second to fourth periodic reports of Brazil. Retrieved from http://tbinternet.ohchr.org/_layouts/treatybodyexternal/Download.aspx?symbolno=CRC%2FC%2FBRA%2FCO%2F2-4&Lang=en
Yin, R. K. (2004). Estudo de caso: Planejamento e métodos Case study: Planning and methods (D. Grassi, Trans.). Porto Alegre, RS: Bookman.
Zornig, S. M. A.-J. (2010). Tornar-se pai, tornar-se mãe: O processo de construção da parentalidade Becoming a father, becoming a mother: The process of building parenting. Tempo Psicanalítico, 42(2), 453-470. Retrieved from http://pepsic.bvsalud.org/scielo.php?script=sci_arttext&pid=S0101-48382010000200010
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