Adaptaciones Culturales y Lingüísticas: Accesibilidad Equitativa a una Intervención Basada en Evidencia Para Cuidadores Diversos
Palabras clave:
entrenamiento de padres, adaptaciones culturales, sensibilidad cultural, accesibilidad equitativa, servicios en españolResumen
Las familias de orígenes minoritarizados sufren disparidades en la atención médica, incluyendo la falta de intervenciones y servicios basados en evidencia y culturalmente relevantes. El siguiente estudio proporciona documentación de los procesos de adaptación llevados a cabo para brindar acceso equitativo a una intervención integral para padres latinos de habla hispana, Padres Manejando Efectivamente el Comportamiento Desafiante en Español (Proyecto PEACE, por sus siglas en inglés). El proceso de adaptación sigue el Modelo de Proceso de Adaptaciones Culturales y el Modelo de Validez Ecológica, y detalla la fase inicial en el proceso para desarrollar una intervención de capacitación para padres con sensibilidad cultural con el fin de replicarla en el futuro. El estudio también proporciona más evidencia sobre cómo implementar las adaptaciones culturales dentro de un modelo de intervención para la capacitación de padres.
Citas
Aarons, G. A., Green, A. E., Palinkas, L. A., Self-Brown, S., Whitaker, D. J., Lutzker, J. R., & Chaffin, M. J. (2012). Dynamic adaptation process to implement an evidence-based child maltreatment intervention. Implementation Science, 7, 32. https://doi.org/10.1186/1748-5908-7-32
Bach, P. A., & Moran, D. J. (2008). ACT in practice: Case conceptualization in acceptance and commitment therapy. New Harbinger Publications.
Barrera, M., Jr., & Castro, F. G. (2006). A heuristic framework for the cultural adaptation of interventions. Clinical Psychology: Science and Practice, 13, 311–316. https://doi.org/10.1111/j.1468-2850.2006.00043.x
Baumann, A. A., Powell, B. J., Kohl, P. L., Tabak, R. G., Penalba, V., Proctor, E. K., Domenech-Rodriguez, M.M., & Cabassa, L. J. (2015). Cultural adaptation and implementation of evidence-based parent-training: A systematic review and critique of guiding evidence. Children and Youth Services Review, 53, 113–120. https://doi.org/10.1016/j.childyouth.2015.03.025
Bearss, K., Johnson, C. R., Handen, B. L., Butter, E., Lecavalier, L., Smith, T., & Scahill, L. (2018). Parent training for disruptive behavior: The RUBI autism network, clinician Manual. Oxford University Press.
Bearss, K., Johnson, C., Smith, T., Lecavalier, L., Swiezy, N., Aman, M., McAdam, D. B., Butter, E., Stillitano, C., Minshawi, N., Sukhodolsky, D. G., Mruzek, D. W., Turner, K., Neal, T., Hallett, V., Mulick, J. A., Green, B., Handen, B., Deng, Y., … Scahill, L. (2015). Effect of parent training vs parent education on behavioral problems in children with autism spectrum disorder: a randomized clinical trial. Journal of the American Medical Association, 313(15), 1524–1533. https://doi.org/10.1001/jama.2015.3150
Benson, P. R. (2010). Coping, distress, and well-being in mothers of children with autism. Research in Autism Spectrum Disorders, 4(2), 217-228. https://doi.org/10.1016/j.rasd.2009.09.008
Bernal, G., & Adames, C. (2017). Cultural adaptations: Conceptual, ethical, contextual, and methodological issues for working with ethnocultural and majority-world populations. Prevention Science, 18(6), 681–688. https://doi.org/10.1007/s11121-017-0806-0
Bernal, G., Bonilla, J., & Bellido, C. (1995). Ecological validity and cultural sensitivity for outcome research: Issues for the cultural adaptation and development of psychosocial treatments with Hispanics. Journal of Abnormal Child Psychology, 23(1), 67–82. https://doi.org/10.1007/BF01447045
Burrow-Sánchez, J. J., & Hops, H. (2019). A randomized trial of culturally accommodated versus standard group treatment for Latina/o adolescents with substance use disorders: Post-treatment through 12-month outcomes. Cultural Diversity & Ethnic Minority Psychology, 25(3), 311–322.
Domenech Rodríguez, M. M., Baumann, A. A., & Schwartz, A. L. (2011). Cultural adaptation of an evidence based intervention: From theory to practice in a Latino/a community context. American Journal of Community Psychology, 47(1-2), 170–186. https://doi.org/10.1007/s10464-010-9371-4
Domenech-Rodríguez, M. M., & Wieling, E. (2004). Developing culturally appropriate, evidence-based treatments for interventions with ethnic minority populations. In M. Rastogi & E. Wieling (Eds.), Voices of color: First-person accounts of ethnic minority therapists (pp. 313–333). Sage.
Gould, E. R., Tarbox, J., Coyne, L. (2018). Evaluating the effects of acceptance and commitment training on the overt behavior of parents of children with autism. Journal of Contextual Behavioral Science, 81-88.
Iadarola, S., Pérez-Ramos, J., Smith, T., & Dozier, A. (2019). Understanding stress in parents of children with autism spectrum disorder: A focus on under-represented families. International Journal of Developmental Disabilities, 65(1), 20–30. https://doi.org/10.1080/20473869.2017.1347228
Johnson, C. R., Handen, B. L., Butter, E., Wagner, A., Mulick, J., Sukhodolsky, D. G., Williams, S., Swiezy, N. A., Arnold, L. E., Aman, M. G., Scahill, L., Stigler, K., A., McDougle, C. J., Vitiello, B., & Smith, T. (2007). Development of a parent training program for children with pervasive developmental disorders. Behavioral Interventions, 22, 201–221. https://doi.org/10.1002/bin.237
Kashdan, T. B., Rottenberg, J. (2010). Psychological flexibility as a fundamental aspect of health. Clinical Psychology Review, 30(7), 865-878. https://doi.org/10.1016/j.cpr.2010.03.001
Lecavalier, L., Leone, S., & Wiltz, J. (2006). The impact of behavior problems on caregiver stress in young people with autism spectrum disorders. Journal of Intellectual Disability Research, 50(3), 172-183.
López, M., Hofer, K., Bumgarner, E., & Taylor, D. (2017). Developing culturally responsive approaches to serving diverse populations: A resource guide for community-based organizations. www.hispanicresearchcenter.org/wp-content/uploads/2018/04/Cultural-Competence-Guide-V2.pdf
López, K., Magaña, S., Morales, M., & Iland, E. (2019). Parents taking action: Reducing disparities through a culturally informed intervention for Latinx parents of children with autism. Journal of Ethnic and Cultural Diversity in Social Work, 28(1), 31-49. https://doi.org/10.1080/15313204.2019.1570890
Magaña, S., López, K., & Machalicek, W. (2017). Parents taking action: A psycho-educational intervention for latino parents of children with autism spectrum disorder. Family Process, 56(1), 59–74. https://doi.org/10.1111/famp.12169
Muroff, J., Robinson, W., Chassler, D., López, L. M., Gaitan, E., Lundgren, L., & Gustafson, D. H. (2017). Use of a smartphone recovery tool for Latinos with co-occurring alcohol and other drug disorders and mental disorders. Journal of Dual Diagnosis, 13(4), 280–290. https://doi.org/10.1080/15504263.2017.1348649
Postorino, V., Gillespie, S., Lecavalier, L., Smith, T., Swiezy, N., Aman, M. G., McDougle, C. J., Bearss, K., Andridge, R. R., Vitiello, B., & Scahill. L. (2019). Clinical correlates of parenting stress in children with autism spectrum disorder and serious behavioral problems. Journal of Child and Family Studies, 28, 2069-2077. https://doi.org/10.1007/s10826-019-01423-7
Rovane, A. M., Hock, R. M., & January, S. A. (2020). Adherence to behavioral treatments and parent stress in families of children with ASD. Research in Autism Spectrum Disorders, 77, 1-11. https://doi.org/10.1016/j.rasd.2020.101609
Sairanen, E., Lappalainen, R., Lappalainen, P., Kaipainen, K., Carlstedt, F., Anclair, M., & Hiltunen, A. (2019). Effectiveness of a web-based Acceptance and Commitment Therapy intervention for wellbeing of parents whose children have chronic conditions: A randomized controlled trial. Journal of Contextual Behavioral Science, 13, 94-102. https://doi.org/10.1016/j.jcbs.2019.07.004
Scahill, L., Aman, M. G., McDougle, C. J., Arnold, L. E., McCracken, J. T., Handen, B., Johnson, C., Dziura, J., Butter, E., Sukhodolsky, D., Swiezy, N., Mulick, J., Stigler, K., Bearss, K., Ritz, L., Wagner, A., & Vitiello, B. (2009). Trial design challenges when combining medication and parent training in children with pervasive developmental disorders. Journal of autism and developmental disorders, 39(5), 720–729. https://doi.org/10.1007/s10803-008-0675-2
Scahill, L., Bearss, K., Lecavalier, L., Smith, T., Swiezy, N., Aman, M. G., Sukhodolsky, D. G., McCracken, C., Minshawi, N., Turner, K., Levato, L., Saulnier, C., Dziura, J., & Johnson, C. (2016). Effect of parent training on adaptive behavior in children with autism spectrum disorder and disruptive behavior: Results of a randomized trial. Journal of the American Academy of Child and Adolescent Psychiatry, 55(7), 602–609.e3. https://doi.org/10.1016/j.jaac.2016.05.001
Singh, N. N., Lancioni, G. E., Karazsia, B. T., Myers, R. E., Hwang, Y.-S., & AnAlayo, B. (2019). Effects of Mindfulness-Based Positive Behavior Support (MBPBS) training are equally beneficial for mothers and their children with autism spectrum disorder or with intellectual disabilities. Frontiers in Psychology, 10, 1-13.
Substance Abuse and Mental Health Services Administration. (2015). Racial/Ethnic Differences in Mental Health Service Use among Adults. HHS Publication No. SMA-15-4906. Rockville, MD.
Valdez, C. R., Ramirez, S. A., Martinez, E., D’Costa, S., & Chavez, T. (2017). A community-responsive adaptation to reach and engage Latino families affected by maternal depression. Family Process, 57(2), 539–556. https://doi.org/10.1111/famp.12310
van Dyck, P. C., Kogan, M. D., McPherson, M. G., Weissman, G. R., & Newacheck, P. W. (2004). Prevalence and characteristics of children with special health care needs. Archives of Pediatrics & Adolescent Medicine, 158(9), 884–890. https://doi.org/10.1001/archpedi.158.9.884
Vespa, J., Medina, L., & Armstrong, D. M. (2018, March). Demographic turning points for the United States: Population projections for 2020 to 2060. https://www.census.gov/library/publications/2020/demo/p25-1144.html
Weeks, A. (2022). Culturally adapting evidence-based and informed practices to meet client population needs and ensure appropriate allocation of scarce resources: A systematic review. Human Service Organizations: Management, Leadership & Governance, https://doi.org/10.1080/23303131.2022.2033902
Whittingham, K., Coyne, L. W. (2019). Acceptance and Commitment Therapy: The Clinician's Guide for Supporting Parents. Academic Press.
Zaidman-Zait, A., Mirenda, P., Duku, E., Vaillancourt, T., Smith, I. M., Szatmari, P., Bryson, S., Fombonne, E., Volden, J., Waddell, C., Zwaigenbaum, L., Georgiades, S., Bennett, T., Elsabaggh, M., & Thompson, A. (2017). Impact of personal and social resources on parenting stress in mothers of children with autism spectrum disorder. Autism, 21(2), 155–166. https://doi.org/10.1177/1362361316633033
Zuckerman, K. E., Lindly, O. J., Reyes, N. M., Chavez, A. E., Macias, K., Smith, K. N., & Reynolds, A. (2017). Disparities in diagnosis and treatment of autism in Latino and non-Latino White families. Pediatrics, 139(5), e20163010. https://doi.org/10.1542/peds.2016-3010