Efficacy of a personal development and well-being intervention for families of people with intellectual disabilities | Eficacia de una intervención en desarrollo personal y bienestar para familiares de personas con discapacidad intelectual
Abstract
The well-being and personal development of families of people with intellectual disabilities is influenced, as available studies show, by their ongoing role as caregivers. The proposed intervention programs have specifically focused in offering strategies to reduce the burden and responding to their manifested needs, mostly related to psychological problems and stress and not to the promotion of well-being. A ten-session group intervention with the goal of cultivating well-being and personal development is proposed for members of a families’ association. Seventeen individuals completed the intervention. Compared with a control waiting list group, and despite noted methodological limitations, results indicate a promising line of intervention and research that could be expanded to other groups of caregivers, support professionals and people with disabilities themselves.
References
Bagnato, M. J. y Barboza, E. (2019). El bienestar emocional en madres de hijos con diagnóstico de TEA. Revista de Psicología 18(1), 46-60. https://revistas.unlp.edu.ar/revpsi/article/view/7438/6550.
Beach, B., Bélanger-Hardy, L., Harding, S., Rodrigues-Perracini, M., García, L., Tripathi, I., Gillis, M. y Dow, B. (2022). Caring for the caregiver: why policy must shift from addressing needs to enabling caregivers to flourish. Frontiers in Public Health, 10, 997981. https://doi.org/10.3389/fpubh.2022.997981.
Bekhet, A. B., Johnson, N. L. y Zauszniewski, J.A. (2012). Resilience in family members of persons with autism spectrum disorders: a review of the literature. Issues in Mental Health Nursing, 33, 650-656. https://doi.org/10.3109/01612840.2012.671441.
Blacher, J. (1984). A dynamic perspective on the impact of a severely handicapped child on the family. En J. Blacher (Ed.), Severely handicapped children and their families (pp. 3-50). FL Academic Press.
Blanco, A. y Díaz, D. (2005). El bienestar social: su concepto y medición. Psicothema, 17(4), 582-589.
Cabezas, D. (2022). La vida en el ámbito familiar. En J. Florez (Coord.), La vida adulta en el síndrome de Down (pp. 83-104). Fundación Iberoamericana Down.
Carr, A., Cullen, K., Keeney, C., Canning, C., Mooney, O., Chinseallaigh, E. y O’Dowd, A. (2021). Effectiveness of positive psychology interventions: a systematic review and meta-analysis. The Journal of Positive Psychology, 16(6), 749-769. https://doi.org/10.1080/17439760.2020.1818807.
Chadwick, D. D., Mannan, H., García-Iriarte, E., McConkey, R., O’Brien, P., Finlay, F. y Harrington, G. (2013). Family voices: life for family carers of people with intellectual disabilities in Ireland. Journal of Applied Research in Intellectual Disabilities, 26(2), 119-132. http://doi.org/10.1111/jar.12003.
Chakhssi, F., Kraiss, J. T., Sommers-Spijkerman, M. y Bohlmeijer, E. T. (2018). The effect of positive psychology interventions on well-being and distress in clinical samples with psychiatric or somatic disorders: a systematic review and meta-analysis. BMC Psychiatry, 18, 1-17. http://doi.org/10.1186/s12888-018-1739-2.
Chou, Y. C., Pu, C. Y., Fu, L. Y. y Kröger, T. (2010). Depressive symptoms in older female carers of adults with intellectual disabilities. Journal of Intellectual Disability Research, 54(12), 1031-1044. http://doi.org/10.1111/j.1365-2788.2010.01332.x.
Cohen, J. (1988). Statistical power analysis for the behavioral sciences. Routledge Academic.
Da Paz, N. S. y Wallander, J. L. (2017). Interventions that target improvements in mental health for parents of children with autism spectrum disorders: a narrative review. Clinical Psychology Review, 51, 1-14. https://doi.org/10.1016/j.cpr.2016.10.006.
Díaz, D., Rodríguez-Carvajal, R., Blanco, A., Morena-Jiménez, B., Gallardo, I., Valle, C. y van Dierendonk, D. (2006). Adaptación española de las escalas de bienestar psicológico de Ryff. Psicothema, 18(3), 572-577. https://www.redalyc.org/pdf/727/72718337.pdf.
Díaz Alzate, M. V. y Ramírez Taborda, M. M. (2022). Experiencias de cuidado y configuraciones subjetivas de madres de niños y niñas con discapacidad. Siglo Cero, 53(1), 51-69. https://doi.org/10.14201/scero20225315169.
Diener, E., Emmons, R., Larsen, R. J. y Griffin, S. (1985). The satisfaction with life scale. Journal of Personality Assessment, 49(1), 71-75. https://doi.org/10.1207/s15327752jpa4901_13.
Diener, E., Wirtz, D., Tov, W., Kim-Prieto, C., Choi, D., Oishi, S. y Biswas-Diener, R. (2010). New well-being measures: short scales to assess flourishing and positive and negative feelings. Social Indicators Research, 97(2), 143-156. https://doi.org/10.1007/s11205-009-9493-y.
Dunst, C. J., Boyd, K., Trivette, C. M. y Hamby, D. W. (2002). Family-oriented program models and professional helpgiving practices. Family Relations, 51(3), 221-229. https://doi.org/10.1111/j.1741-3729.2002.00221.x.
Eden-Piercy, G. V., Blacher, J. B. y Eyman, R. K. (1986). Exploring parents´ reactions to their young child with severe handicaps. Mental Retardation, 24(5), 285-291.
Espejo, B., Checa, I., Perales-Puchalt, J. y Lisón, J. F. (2020). Validation and measurement invariance of the Scale of Positive and Negative Experience (SPANE) in a Spanish general sample. International Journal of Environmental Research and Public Health, 17(22), 1-15. https://doi.org/10.3390/ijerph17228359.
Fernández-Ávalos, M. I., Pérez-Marfil, M. N., Ferrer-Cascales, R., Cruz-Quintana, F., Clement-Carbonell, V. y Fernández-Alcántara, M. (2020). Quality of life and concerns in parent caregivers of adult children diagnosed with intellectual disability: a qualitative study. International Journal of Environmental Research and Public Health, 17(22), 8690. https://doi.org/10.3390/ijerph17228690.
Fernández González, A., Montero Centeno, D., Martínez Rueda, N., Orcasitas García, J. R. y Villaescusa Peral, M. (2015). Calidad de vida familiar: marco de referencia, evaluación e intervención. Siglo Cero, 46(2), 7-29. https://dx.doi.org/10.14201/scero2015462729.
Fernández Suárez, M. P. y Espinoza Soto, A. E. (2019). Salud mental e intervenciones para padres de niños con trastorno del espectro autista: una revisión narrativa y la relevancia de esta temática en Chile. Revista de Psicología, 317(2), 643-682. http://dx.doi.org/10.18800/psico.201902.011.
Freixa, M. (2000). Familia y deficiencia mental. Amarú Ediciones.
García Ortiz, K. D., Quintero Acosta, S. M., Trespalacios Andrade, S. K. y Fernández-Delgado, M. K. (2021). Sobrecarga y calidad de vida en cuidadores familiares de personas con discapacidad intelectual. Gaceta Médica Caracas, 129(1), 65-73. https://saber.ucv.ve/ojs/index.php/rev_gmc/article/view/21271.
García Toro, M. y Sánchez Gómez, M. C. (2020). Experiencias de apego en madres de niños con retraso madurativo: análisis de contenido. Siglo Cero, 51(1), 89-109. https://doi.org/10.14201/scero202051189109.
Ghosh, A. y Deb, A. (2017). Positive psychology interventions for chronic physical illnesses: a systematic review. Psychological Studies, 62, 213-232.
Giné, C. (2000). Las necesidades de la familia a lo largo del ciclo vital. En M. A. Verdugo (Ed.), Familias y discapacidad intelectual. FEAPS.
Giné, C., Mas, J. M., Balcells-Balcells, A., Baqués, N. y Simón, C. (2019). Escala de Calidad de Vida Familiar para familias con hijos/as mayores de 18 años con discapacidad intelectual y/o en el desarrollo. Versión Revisada. CdVF-ER (>18). Plena Inclusión.
Giné, C., Vilaseca, R., Gràcia, M., Simón, C., Montalà, M. D., Salvador-Beltrán, F., Balcells, A., Pró, M. T., Simó, D., Adam, A. L., González, A., Cagigal, V. y Mas, J. M. (2013). Las escalas de calidad de vida familiar (CDVF-E): apoyo y orientación para la intervención. Siglo Cero, 44(247-3), 21-36.
Goitia Añorga, A., Darretxe Urritxi, L. y Berasategi Sancho, N. (2019). Historias de vida de familias con hijos e hijas con síndrome de Angelman. Siglo Cero, 50(4), 23-37. https://doi.org/10.14201/scero20195042337.
Goldberg, D. P. y Hillier, V. F. (1979). A scaled version of the General Health Questionnaire. Psychological Medicine, 9(1), 139-145. https://doi.org/10.1017/S0033291700021644.
González-del-Yerro, A., Simón-Rueda, C., Cagigal-Gregorio, V. y Blas-Gómez, E. (2013). La calidad de vida de las familias de personas con discapacidad intelectual. Un estudio cualitativo realizado en la Comunidad de Madrid. REOP, 24(1), 93-109. https://doi.org/10.5944/reop.vol.24.num.1.2013.11273.
Gorbeña, S., Govillard, L., Gómez, I., Sarrionandia, S., Macía, P., Penas, P. e Iraurgi, I. (2021). Design and evaluation of a positive intervention to cultivate mental health: preliminary findings. Psicología, Reflexão e Crítica, 34(7), 1-10. https://doi.org/10.1186/s41155-021-00172-1.
Gorbeña, S., Gomez, I., Govillard, L., Sarrionandia, S., Macia, P., Penas, P. e Iraurgi, I. (2022). The effects of an intervention to improve mental health during the COVID-19 quarantine: comparison with a COVID control group, and a pre-COVID intervention group. Psychology & Health, 37(2), 178-193. https://doi.org/10.1080/08870446.2021.1936520.
Gorbeña, S., Gómez, I., Sarrionandia, S., Penas, P., Amillano, A., López de Letona, O. e Iraurgi, I. (2025). Ongizate. Programa de intervención psicológica en desarrollo personal y bienestar. Ediciones Deusto. http://www.deusto-publicaciones.es/deusto/pdfs/otraspub/otraspub21.pdf.
Grey, J. M., Totsika, V. y Hastings, R. P. (2018). Physical and psychological health of family carers co-residing with an adult relative with an intellectual disability. Journal of Applied Research in Intellectual Disabilities, 31, 191-202. https://doi.org/10.1111/jar.12353.
Huppert, F. A. (2014). The state of wellbeing science: concepts, measures, interventions and policies. En F. A. Huppert y C. Cooper (Eds.), Wellbeing: a complete reference guide, interventions and policies to enhance wellbeing (pp 1-49). John Wiley & Sons.
Keyes, C. L. M. (1998). Social well-being. Social Psychology Quarterly, 61(2), 121-140. https://doi.org/10.2307/2787065.
Keyes, C. L. M. (2002). The mental health continuum: from languishing to flourishing in life. Journal of Health and Social Behavior, 43(2), 207-222. https://doi.org/10.2307/3090197.
Keyes, C. L. M. (2003). Complete mental health: an agenda for the 21st century. En C. L. M. Keyes y J. Haidt (Eds.), Flourishing: positive psychology and the life well-lived (pp. 293-312). American Psychological Association.
Lakens, D. (2013). Calculating and reporting effect sizes to facilitate cumulative science: a practical primer for t-tests and ANOVAs. Frontiers in Psychology, 4, 112. https://doi.org/10.3389/fpsyg.2013.00863.
Leyva-López, A., Rivera-Rivera, L, Márquez-Caraveo, M. E, Toledano-Toledano, F., Saldaña-Medina, C., Chavarría-Guzmán, K, Delgado-Gallegos, J. L., Katz-Guss, G. y Lazcano-Ponce, E. (2022). Estudio de la calidad de vida en cuidadores familiares de personas con discapacidad intelectual. Salud pública de México, 64(4), 397-405. https://doi.org/10.21149/13325.
Lima-Rodríguez, J. S., Baena-Ariza, M. T. Domínguez-Sánchez, I. y Lima-Serrano, M. (2018). Discapacidad intelectual en niños y adolescentes: influencia en la familia y la salud familiar. Revisión sistemática. Enfermería Clínica, 28(2), 89-102. https://doi.org/10.1016/j.enfcli.2017.10.005.
Lobo, A., Pérez-Echeverría, M. J. y Artal, J. (1986). Validity of the scaled version of the General Health Questionnaire (GHQ-28) in a Spanish population. Psychological Medicine, 16(1), 135-140. https://doi.org/10.1017/S0033291700002579.
Lunsky, Y., Robinson, S., Reid, M. y Palucka, A. (2015). Development of a mindfulness-based coping with stress group for parents of adolescents and adults with developmental disabilities. Mindfulness, 6(6), 1335-1344. https://doi.org/10.1007/s12671-015-0404-9.
Martínez Rueda, N., Fernández González, A., Orcasitas García, J. R., Montero Centeno, D. y Villaescusa Peral, M. (2016). Diseño de un programa de apoyo a la calidad de vida de familias con jóvenes y adultos con discapacidad intelectual. Siglo Cero, 47(3), 47-67. https://doi.org/10.14201/scero20164734767.
Montalvo, A., Flórez, I. E. y Stavro, D. (2008). Cuidando a cuidadores familiares de niños en situación de discapacidad. AQUICHAN, 8(2), 197-211.
Moro Gutiérrez, L., Jenaro Río, C. y Solano Sánchez, M. (2015). Miedos, esperanzas y reivindicaciones de padres de niños con TEA. Siglo Cero, 46(4), 7-24. https://doi.org/10.14201/scero2015464724.
Mumbardó-Adam, C., Arellano, A., Vicente, E. y Berástegui, A. (2023). How should we support families of people with intellectual disability to promote their self-determination? A Delphi study on critical components for intervention. Journal of Intellectual & Developmental Disability, 48(4), 357-369. https://doi.org/10.3109/13668250.2023.2234547.
Muñoz Valdés, J. A., Poblete Toloza, Y. P. y Jiménez Figueroa, A. E. (2012). Calidad de vida familiar y bienestar subjetivo en jóvenes con discapacidad intelectual de un establecimiento con educación especial y laboral de la Ciudad de Talca. Interdisciplinaria, 29(2), 207-221.
Oñate, L. y Calvete Zumalde, E. (2017). Una aproximación cualitativa a los factores de resiliencia en familiares de personas con discapacidad intelectual en España. Psychosocial Intervention, 26, 93-101. https://doi.org/10.1016/j.psi.2016.11.002.
Papageorgiou, V. y Kalyva, E. (2010). Self-reported needs and expectations of parents of children with autism spectrum disorders who participate in support group. Research in Autism Spectrum Disorders, 4(4), 653-660. https://doi.org/10.1016/j.rasd.2010.01.001.
Parks, A. C. y Biswas-Diener, R. (2013). Positive interventions: past, present, and future. En T. B. Kashdan y J. Ciarrochi (Eds.), Mindfulness, acceptance, and positive psychology: the seven foundations of well-being (pp. 140-165). Context Press.
Rodríguez, M. (2022). Los hermanos: compañeros de viaje. En J. Florez (Coord.), La vida adulta en el síndrome de Down (pp.105-124). Fundación Iberoamericana Down21.
Romero Martínez, A., Ruiz Robledillo, N., Sariñana González, P., de Andrés García, S, Vitoria Estruch, S. y Moya Albiol, L. (2017). A cognitive-behavioural intervention improves cognition in caregivers of people with autism spectrum disorder: A pilot study. Psychosocial Intervention, 26, 165-170. http://dx.doi.org/10.1016/j.psi.2017.06.002.
Ru-Lan, H., Wen-Huei, H. y Wen-Chung, L. (2016). Short-term family-centered workshop for children with developmental delays enhances family functioning and satisfaction: a prospective clinical trial. Medicine, 95(31), e4200. https://doi.org/10.1097/MD.0000000000004200.
Ryff, C. D. (1989). Happiness is everything, or is it? Explorations on the meaning of psychological well-being. Journal of Personality and Social Psychology, 57(6), 1069-1081. https://doi.org/10.1037/0022-3514.57.6.1069.
Sánchez-López, M. P. y Dresch, V. (2008). The 12-Item General Health Questionnaire (GHQ-12): reliability, external validity and factor structure in the Spanish population. Psicothema, 20(4), 839-843. https://www.psicothema.com/pdf/3564.pdf.
Sánchez-Teruel, D. y Robles-Bello, M. A. (2015). Respuesta a un programa de resiliencia aplicado a padres de niños con síndrome de Down. Universitas Psychologica, 14(2), 645-657. https://doi.org/10.11144/Javeriana.upsy14-1.rpra.
Sarrionandia, S., Gorbeña, S., Gómez, I., Penas, P., Macía, P. e Iraurgi, I. (2023). Effects of a multi-component psychological intervention to cultivate mental health in older adults. Clinical Interventions in Aging, 17, 1493-1502. https://doi.org/10.2147/CIA.S376894.
Seligman, M. E. P. (2011). Flourish: a visionary new understanding of happiness and well-being. Free Press.
Serrano Fernández, L. (2022). Perspectivas familiares sobre la vivencia paternofilial de la discapacidad intelectual: una mirada fenomenológica. Siglo Cero, 53(3), 9-27. https://doi.org/10.14201/scero202253927.
Serrano Fernández, L. e Izuzquiza, L. (2017). Percepciones parentales sobre el impacto del síndrome de Down en la familia. Siglo Cero, 48(2), 81-98. https://doi.org/10.14201/scero20174828198.
Sin, N. y Lyubomirsky, S. (2009). Enhancing well-being and alleviating depressive symptoms with positive psychology interventions: a practice-friendly meta-analysis. Journal of Clinical Psychology, 65(5), 467-487. https://doi.org/10.1002/jclp.20593.
Skotko, B. G., Levine, S. P. y Goldstein, R. (2011). Having a brother or sister with Down syndrome: perspectives from siblings. American Journal of Medical Genetics, 155A(10), 2348-2359. https://doi.org/10.1002/ajmg.a.34228.
Sutipan, P., Intarakamhang, U. y Macaskill, A. (2017). The impact of positive psychological interventions on wellbeing in healthy elderly people. Journal of Happiness Studies, 18, 269-291. https://doi.org/10.1007/s10902-015-9711-z.
Tejada-Gallardo, C., Blasco-Belled, A., Torrelles-Nadal, C. y Alsinet, C. (2020). Effects of school-based multicomponent positive psychology interventions on well-being and distress in adolescents: a systematic review and meta-analysis. Journal of Youth and Adolescence, 49(10), 1943-1960. https://doi.org/10.1007/s10964-020-01289-9.
Torres-Lista, V. (2019). Impacto psicosocial del diagnóstico del trastorno del espectro autista (TEA) en los principales cuidadores. Investigación y Pensamiento Crítico, 7(1), 27-39. https://doi.org/10.37387/ipc.v7i1.13.
Vázquez, C., Duque, A. y Hervás, G. (2013). Satisfaction with life scale in a representative sample of Spanish adults: validation and normative data. The Spanish Journal of Psychology, 16(E82), 1-15. https://doi.org/10.1017/sjp.2013.82.
Villaescusa Peral, M., Martínez-Rueda, N. y Yurrebaso Atutxa, G. (2022). Enfoque centrado en la familia en las entidades de personas con discapacidad intelectual y del desarrollo: conceptualización y orientaciones para la puesta en práctica. Zerbitzuan, 76, 47-58. https://doi.org/10.5569/1134-7147.76.03.
Wehmeyer, M. L. (2021). The future of positive psychology and disability. Frontiers in Psychology, 12, 790506. https://doi.org/10.3389/fpsyg.2021.790506.
Wong, P. T. P. y Roy, S. (2018). Critique of positive psychology and positive interventions. En N. J. L. Brown, T. Lomas y F. J. Eiroa-Orosa (Eds.), The Routledge International Handbook of Critical Positive Psychology (pp. 142-160). Routledge/Taylor & Francis Group.
As an open access journal, access to the contents of the journal will be free of charge and the property rights are subject to a Creative Commons license. More specifically, the magazine will be licensed under the 'Attribution - Non-Commercial - No Derivative Works (by-nc-nd') license. This license allows free use of the content, but does not allow commercial use of the original work or the generation of derivative works.
