Assessment of intervention to promote resilience in families of children with Down Syndrome
DOI:
https://doi.org/10.15448/1980-8623.2021.4.33962Keywords:
family resilience, intervention, family, down syndromeAbstract
This study aims to evaluate effects of an intervention to promote resilience in eight families of children with Down syndrome (DS) up to 2 years of age. These families were classified according to arrangements and income, then, they were randomly distributed into experimental and control groups. Home visits occurred in three steps: pre-test, post-test and follow up. All participants answered a sociodemographic questionnaire and a family resilience interview; in addition, parents responded to Lipp Stress Inventory and Beck Depression Inventory. A field diary and an evaluation interview for the families were conducted during intervention. No statistically significant differences were found between family resilience values at different steps (p = 0,77). However, some participants perceive changes in their family after intervention, for example, improvements in communication and knowledge about DS. Studies with more participants and extended period of time are needed.
Downloads
References
Abbasi, S., Sajedi, F., Hemmati, S., Najafi Fard, T., Azadchehr, M. J., & Poursadoghi, A. (2016). Evaluation of quality of life in mothers of children with Down syndrome. Journal of Practice in Clinical Psychology, 4(2), 81-88. http://dx.doi.org/10.15412/J.JPCP.06040202
Aburawi, E. H., Nagelkerke, N., Deeb, A., Abdulla, S., & Abdulrazzaq, Y. M. (2015). National growth charts for United Arab Emirates children with Down syndrome from birth to 15 years of age. Journal of Epidemiology, 25(1), 20-29. https://doi.org/10.2188/jea.JE20130081
Alexander, T., & Walendzik, J. (2016). Raising a child with Down syndrome: Do preferred coping strategies explain differences in parental health? Psychology, 7, 28-39. http://dx.doi.org/10.4236/psych.2016.71005
American Psychological Association, APA (2002). Criteria for evaluating treatment guidelines. American Psychologist, 57(12), 1052-1059. http://dx.doi.org/10.1037/0003-066X.57.12.1052
Azevedo, A. P. S., & Damke, A. S. (2017). A criança com síndrome de Down: O sentido da inclusão no contexto da exclusão. Revista Educação Especial, 30(57), 103-114. http://dx.doi.org/10.5902/1984686X17862
Baptista, M. N., & Morais, P. R. (2007). Delineamento experimental. In M. N. Baptista, & D. C. Campos (Orgs.), Metodologias de pesquisa em ciências: Análises quantitativa e qualitativa (pp.122-138). LTC.
Bardin, L. (2011). Análise de conteúdo. Lisboa: Edições 70.
Beck, A. T., Steer, R. A., & Brown, G. H. (1996). BDI-II: Beck depression inventory manual. Psychological Corporation.
Caples, M., Martin, A-M., Dalton, C., Marsh, L., Savage, E., Knafl, G., & Van Riper, M. (2018). Adaptation and resilience in families of individuals with Down syndrome living in Ireland. British Journal of Learning Disabilities, 1-9. https://doi.org/10.1111/bld.12231
Card, N. A., & Barnett, M. A. (2015). Methodological considerations in studying individual and family resilience. Family Relations, 64, 120-133. https://doi.org/10.1111/fare.12102
Choi, E. K., Lee, Y. J., & Yoo, I. Y. (2011). Factors associated with emotional response of parents at the time of diagnosis of Down syndrome. Journal for Specialists in Pediatric Nursing, 16, 113-120. https://doi.org/10.1111/j.1744-6155.2011.00276.x
Choi, H., & Van Riper, M. (2016). Maternal perceptions to open-ended questions about life with Down syndrome in Korea. The Qualitative Report, 21(2), 288-298. https://nsuworks.nova.edu/tqr/vol21/iss2/7
Choi, E. K., & Yoo, I. Y. (2015). Resilience in families of children with Down syndrome in Korea. International Journal of Nursing Practice, 21, 532-541. https://doi.org/10.1111/ijn.12321
Crnic, K. A., Neece, C. L., McIntyre, L. L., Blacher, J., & Baker, B. L. (2017). Intellectual disability and developmental risk: Promoting intervention to improve child and family well-being. Child Development, 1-10. https://doi.org/10.1111/cdev.12740
Dempsey, I., & Keen, D. (2008). A review of processes and outcomes in family-centered services for children with a disability. Topics in Early Childhood Special Education, 28, 42-52. https://doi.org/10.1177/0271121408316699
Dessen, M. A., & Braz, M. P. (2005). A família e suas inter-relações com o desenvolvimento humano. In M. A. Dessen, & A. L. Costa Jr. (Orgs.), A ciência do desenvolvimento humano: tendências atuais e perspectivas futuras (pp. 113-131). Artmed.
Dessen, M. A., & Cerqueira-Silva, S. (2009). Desenvolvendo sistemas de categorias com dados de entrevistas. In L. Weber & M. A. Dessen (Eds), Pesquisando a Família: Instrumentos para coleta e análise de dados (pp. 43-56) Curitiba: Juruá.
Durgante, H., & Dell’Aglio, D. D. (2018). Critérios metodológicos para a avaliação de programas de intervenção em psicologia. Avaliação Psicológica, 17(1), 155-162. http://dx.doi.org/10.15689/ap.2017.1701.15.13986
Field, A. (2009). Descobrindo a estatística usando o SPSS (L. Viali, Trad.). Artmed.
Gerstein, E. D., Crnic, K. A., Blacher, J., & Baker, B. L. (2009). Resilience and the course of daily parenting stress in families of young children with intellectual disabilities. Journal of Intellectual Disability Research, 53(12), 981-997.
Goff, B. S. N., Monk, J. K., Malone, J., Staats, N., Tanner, A., & Springer, N. P. (2016). Comparing parents of children with Down syndrome at different life span stages. Journal of Marriage and Family, 78(4), 1131-1148. https://doi.org/10.1111/jomf.12312
Gorenstein, C., Pang, W. Y., Argimon, I. L., & Werlang, B. S. G. (2011). Manual do inventário de depressão de Beck – BDI-II. Casa do Psicólogo.
Grant, S., Cross, E., Wraith, J. E., Jones, S., Mahon, L., Lomax, M., … Hare, D. (2013). Parental social support, coping strategies, resilience factors, stress, anxiety and depression levels in parents of children with MPS III (Sanfilippo syndrome) or children with intellectual disabilities (ID). Journal of Inherited Metabolic Disease, 36, 281-291.
Koros, E. J., & Harrahs, M. (2017). Coping with Down’s Syndrome: A Case Study of Parents with Children Suffering from Down’s Syndrome in Kenya. Journal of Special Needs and Disabilities Studies, 1(3), 1-21.
Lipp, M. E. N. (2000). Inventário de Sintomas de Estresse para Adultos. Casa do Psicólogo.
Marchal, J. P., van Oers, H. A., Maurice-Stam, H., Grootenhuis, M. A., van Trotsenburg, A. S. P., & Haverman, L. (2017). Distress and everyday problems in Dutch mothers and fathers of young adolescents with Down syndrome. Research in Developmental Disabilities, 67, 19-27. https://doi.org/10.1016/j.ridd.2017.05.005
Mazzeo, V. (2007). Los cambios en la organización familiar: El incremento de las familias monoparentales en la Ciudad de Buenos Aires a partir de los ochenta. Población de Buenos Aires, 4(5), 63-74.
Nussbaum, R. L., McInnes, R. R., & Willard, H. F. (2015). Thompson and Thompson genetics in medicine. Elsevier Health Sciences.
Oñate, L., & Calvete, E. (2017). Una aproximación cualitativa a los factores de resiliencia en familiares de personas con discapacidad intelectual en España. Psychosocial Intervention, 26(2), 93-101. https://doi.org/10.1016/j.psi.2016.11.002
Padesky, C. A., & Mooney, K. A. (2012). Strengths-based cognitive-behavioural therapy: A four-step model to build resilience. Clinical Psychology and Psychotherapy, 19, 283-290. https://doi.org/10.1002/cpp.1795
Pereira-Silva, N. L., & Almeida, B. R. (2014). Reações, sentimentos e expectativas de famílias de pessoas com necessidades educacionais especiais. Psicologia Argumento, 32(79), 111-122. http://dx.doi.org/10.7213/psicol..argum.32.s02.AO10
Raposo, H. S., Figueiredo, B. F. C., Lamela, D. J. P. V., Nunes-Costa, R. A., Castro, M. C., & Prego, J. (2009). Ajustamento da criança à separação ou divórcio dos pais. Revista de Psiquiatria Clínica, 38(1), 29-33. http://dx.doi.org/10.1590/S0101-60832011000100007
Roizen, N. J., Magyar, C. I., Kuschner, E. S., Sulkes, S. B., Druschel, C., van Wijngaarden, E., Rodgers, L., Diehl, A., Lowry, R. & Hyman, S. L. (2014). A community cross-sectional survey of medical problems in 440 children with Down syndrome in New York state. Journal of Pediatrics, 164, 871-875. https://doi.org/10.1016/j.jpeds.2013.11.032
Rooke, M. I. (2014). Famílias com filho com síndrome de Down: Investigando a resiliência familiar [Dissertação de mestrado, Universidade Federal de Juiz de Fora]. http:// repositorio.ufjf.br:8080/jspui/bitstream/ufjf/863/1/mayseitagibarooke.pdf
Rooke, M. I. (2019). Resiliência em famílias de crianças com síndrome de Down: Desenvolvimento, implementação de uma intervenção e avaliação de seus efeitos [Tese de doutorado, Universidade Federal de Juiz de Fora, Juiz de Fora]. https://repositorio.ufjf.br/jspui/bitstream/ufjf/9980/2/mayseitagibarooke.pdf
Rooke, M. I., Almeida, B. R., & Mejía, C. F. (2017). Intervenção com famílias de pessoas com deficiência intelectual: Análise da produção científica. Revista de Psicologia, 8(2), 92-100.
Rooke, M. I., & Pereira-Silva, N. L. (2016). Indicativos de resiliência familiar em famílias de crianças com síndrome de Down. Estudos de Psicologia, 33, 117-126. http://dx.doi.org/10.1590/1982-027520160001000012
Sánchez-Teruel, D., & Robles-Bello, M. A. (2015). Respuesta a un programa de resiliencia aplicado a padres de niños con Síndrome de Down. Universitas Psychologica, 14(2), 645-658. https://doi.org/10.11144/Javeriana.upsy14-1.rpra
Santos, A. A. A. (2007). Delineamento quase-experimental. In M. N. Baptista & D. C. Campos (Orgs.), Metodologias de pesquisa em ciências: Análises quantitativa e qualitativa (pp.139-146). LTC.
Scorgie, K., & Sobsey, D. (2000). Transformational outcomes associated with parenting children who have disabilities. Mental Retardation, 38(3), 195-206. https://doi.org/10.1352/0047-6765(2000)038<0195:TOAWPC>2.0.CO;2
Van Riper, M. (2007). Families of children with Down syndrome: Responding to “a change in plans” with resilience. Journal of Pediatric Nursing, 22, 116-128. https://doi.org/10.1016/j.pedn.2006.07.004
Walsh, F. (2016). Applying a family resilience framework in training, practice, and research: Mastering the art of the possible. Family Process, 55, 616-632. https://doi.org/10.1111/famp.12260
Downloads
Published
How to Cite
Issue
Section
License
Copyright (c) 2022 Psico
This work is licensed under a Creative Commons Attribution 4.0 International License.
Copyright
The submission of originals to Psico implies the transfer by the authors of the right for publication. Authors retain copyright and grant the journal right of first publication. If the authors wish to include the same data into another publication, they must cite Psico as the site of original publication.
Creative Commons License
Except where otherwise specified, material published in this journal is licensed under a Creative Commons Attribution 4.0 International license, which allows unrestricted use, distribution and reproduction in any medium, provided the original publication is correctly cited.
