Family Perspectives on the Parent-Child Experience of Intellectual Disability: A Phenomenological View
Abstract Background: A review of the scientific literature has shown that having a child with a disability has a heterogeneous impact at the family level. Method: The present study aims to analyse in depth the experience of intellectual disability between parents and children. Due to the qualitative nature of the research, it was decided to stick to the phenomenological method approached from the interpretive hermeneutical perspective proposed by Heidegger. Data was collected through in-depth not-structured interviews conducted with 15 parents of 9 children with intellectual disabilities. Results: The results show that the experience of intellectual disability in family systems does not respond to a common pattern, despite being able to identify a series of central categories that allow the consideration of these experiences: “the first news and the impact of the diagnosis”; “the experience of disability from the heterogeneity of family structures”; “the processes of personal, family and social acceptance”; “the educational experience”, and “uncertainty about the future”. Conclusions: Research on how parents understand parenting of their children with disabilities is fundamental and strategic for the subsequent development and implementation of family-focused intervention programs.
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BENITO, L. y CARPIO, C. (2017). Families with a disabled member: impact and family education. Procedia-Social and Behavioral Sciences, 237, 418-425. https://doi.org/10.1016/j.sbspro.2017.02.084
BOEHM, T. L. y CARTER, E. W. (2019). Family quality of life and its correlates among parents of children and adults with intellectual disability. American Journal on Intellectual and Developmental Disabilities, 124(2), 99-115. https://doi.org/10.1352/1944-7558-124.2.99
BRENNAN, D., MURPHY, R., McCALLION, P. y McCARRON, M. (2017). “What’s going to happen when we’re gone?” Family caregiving capacity for older people with an intellectual disability in Ireland. Journal of Applied Research in Intellectual Disabilities, 31(2), 226-235. https://doi.org/10.1111/jar.12379
CADWGAN, J. y GOODWIN, J. (2018). Helping parents with the diagnosis of disability. Paediatrics and Child Health, 28(8), 357-363. https://doi.org/10.1016/j.paed.2018.06.006
CHAKRABORTY, B., RAO, A., SHENOY, R. K., DAVDA, L. y SUPRABHA, B. S. (2019). Stress?mediated quality of life outcomes in parents of disabled children: a case-control study. Journal of Indian Society of Pedodontics and Preventive Dentistry, 37(3), 237-244. https://doi.org/10.4103/JISPPD.JISPPD_266_18
CRETTENDEN, A., LAM, J. y DENSON, L. (2018). Grandparent support of mothers caring for a child with a disability: impacts for maternal mental health. Research in Developmental Disabilities, 76, 35-45. https://doi.org/10.1016/j.ridd.2018.02.004
CRNIC, K. A., NEECE, C. L., McINTYRE, L. L., BLACHER, J. y BAKER, B. L. (2017). Intellectual disability and developmental risk: promoting intervention to improve child and family well–being. Child Development, 88(2), 1-10. https://doi.org/436-445. 10.1111/cdev.12740
CROMBAG, N. M., PAGE–CHRISTIAENS, G. C., SKOTKO, B. G. y DE GRAAF, G. (2019). Receiving the news of Down syndrome in the era of prenatal testing. American Journal of Medical Genetics Part A, 182(2), 374-385. https://doi.org/10.1002/ajmg.a.61438
DUCCA, L. V., GONZÁLEZ, D. y CORTÉS, J. (2022). Investigación Acción Participativa: una experiencia con jóvenes con discapacidad intelectual y sus familias. Itinerarios de Trabajo Social, 2, 45-56. https://doi.org/10.1344/its.i2.35684
FERREIRA, M., PEREIRA, C. R. R., SMEHA, L. N., PARABONI, P. y WEBER, A. S. (2019). Repercusiones del diagnóstico del síndrome de Down desde la perspectiva paterna. Psicologia: Ciência e Profissão, 39, 1-14. https://doi.org/10.1590/1982-3703003181365
FRIESE, S. (2019). Qualitative data analysis with ATLAS.ti. SAGE Publications Limited.
GUEVARA, Y. y GONZÁLEZ, E. (2012). Las familias ante la discapacidad. Revista Electrónica de Psicología Iztacala, 15(3), 1023-1050. https://revistas.unam.mx/index.php/repi/article/viewFile/33643/30711
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HSIAO, Y. J. (2018). Parental stress in families of children with disabilities. Intervention in School and Clinic, 53(4), 201-205. https://doi.org/10.1177/1053451217712956
HUERTA, Y. y RIVERA, M. E. (2017). Resiliencia, recursos familiares y espirituales en cuidadores de niños con discapacidad. Journal of Behavior, Health and Social Issues, 9(2), 70-81. https://doi.org/10.1016/j.jbhsi.2018.01.005
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IZQUIERDO, G. M., RODRÍGUEZ, J. C. R. y FUERTE, J. A. (2015). La fenomenología desde la perspectiva hermenéutica de Heidegger: una propuesta metodológica para la salud pública. Facultad Nacional de Salud Pública: el Escenario para la Salud Pública desde la Ciencia, 33(3), 435-443. https://doi.org/10.17533/udea.rfnsp.v33n3a14
KRUITHOF, K., OLSMAN, E., NIEUWENHUIJSE, A. y WILLEMS, D. (2021). “I hope I’ll outlive him”: a qualitative study of parents’ concerns about being outlived by their child with profound intellectual and multiple disabilities. Journal of Intellectual and Developmental Disability, 1-11. https://doi.org/10.3109/13668250.2021.1920377
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LINCOLN, Y. S. y GUBA, E. G. (1985). Naturalistic inquiry. SAGE Pub.
LUIJKX, J., van der PUTTEN, A. A. y VLASKAMP, C. (2019). A valuable burden? The impact of children with profound intellectual and multiple disabilities on family life. Journal of Intellectual and Developmental Disability, 44(2), 184-189. https://doi.org/10.3109/13668250.2017.1326588
LYOTARD, J. F. (1989). La fenomenología. Paidós.
MAÑAS, M., GONZÁLEZ, B. y CORTÉS, P. (2020). Historias de vida de personas con discapacidad intelectual: entre el acoso y exclusión en la escuela como moduladores de la identidad. Revista Educación, Política y Sociedad, 5(1), 60-84. https://repositorio.uam.es/bitstream/handle/10486/689680/REPS_5_1_4.pdf?sequence=1
MAULIK, P. K., MASCARENHAS, M. N., MATHERS, C. D., DUA, T. y SAXENA, S. (2011). Prevalence of intellectual disability: a meta-analysis of population-based studies. Research in Developmental Disabilities, 32(2), 419-436. https://doi.org/10.1016/j.ridd.2010.12.018
MAULIK, P. K., MASCARENHAS, M. N., MATHERS, C. D., DUA, T. y SAXENA, S. (2013). Prevalence of intellectual disability: a meta-analysis of population-based studies: Corrigendum. Research in Developmental Disabilities, 34(2), 729. https://doi.org/10.1016/j.ridd.2012.10.013
McCONKEY, R., CRAIG, S. y KELLY, C. (2019). The prevalence of intellectual disability: A comparison of national census and register records. Research in Developmental Disabilities, 89, 69-75. https://doi.org/10.1016/j.ridd.2019.03.009
McKINLAY, J., WILSON, C., HENDRY, G. y BALLANTYNE, C. (2022). “It feels like sending your children into the lions’ den” – a qualitative investigation into parental attitudes towards ASD inclusion, and the impact of mainstream education on their child. Research in Developmental Disabilities, 120, 104128. https://doi.org/10.1016/j.ridd.2021.104128
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BOEHM, T. L. y CARTER, E. W. (2019). Family quality of life and its correlates among parents of children and adults with intellectual disability. American Journal on Intellectual and Developmental Disabilities, 124(2), 99-115. https://doi.org/10.1352/1944-7558-124.2.99
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CADWGAN, J. y GOODWIN, J. (2018). Helping parents with the diagnosis of disability. Paediatrics and Child Health, 28(8), 357-363. https://doi.org/10.1016/j.paed.2018.06.006
CHAKRABORTY, B., RAO, A., SHENOY, R. K., DAVDA, L. y SUPRABHA, B. S. (2019). Stress?mediated quality of life outcomes in parents of disabled children: a case-control study. Journal of Indian Society of Pedodontics and Preventive Dentistry, 37(3), 237-244. https://doi.org/10.4103/JISPPD.JISPPD_266_18
CRETTENDEN, A., LAM, J. y DENSON, L. (2018). Grandparent support of mothers caring for a child with a disability: impacts for maternal mental health. Research in Developmental Disabilities, 76, 35-45. https://doi.org/10.1016/j.ridd.2018.02.004
CRNIC, K. A., NEECE, C. L., McINTYRE, L. L., BLACHER, J. y BAKER, B. L. (2017). Intellectual disability and developmental risk: promoting intervention to improve child and family well–being. Child Development, 88(2), 1-10. https://doi.org/436-445. 10.1111/cdev.12740
CROMBAG, N. M., PAGE–CHRISTIAENS, G. C., SKOTKO, B. G. y DE GRAAF, G. (2019). Receiving the news of Down syndrome in the era of prenatal testing. American Journal of Medical Genetics Part A, 182(2), 374-385. https://doi.org/10.1002/ajmg.a.61438
DUCCA, L. V., GONZÁLEZ, D. y CORTÉS, J. (2022). Investigación Acción Participativa: una experiencia con jóvenes con discapacidad intelectual y sus familias. Itinerarios de Trabajo Social, 2, 45-56. https://doi.org/10.1344/its.i2.35684
FERREIRA, M., PEREIRA, C. R. R., SMEHA, L. N., PARABONI, P. y WEBER, A. S. (2019). Repercusiones del diagnóstico del síndrome de Down desde la perspectiva paterna. Psicologia: Ciência e Profissão, 39, 1-14. https://doi.org/10.1590/1982-3703003181365
FRIESE, S. (2019). Qualitative data analysis with ATLAS.ti. SAGE Publications Limited.
GUEVARA, Y. y GONZÁLEZ, E. (2012). Las familias ante la discapacidad. Revista Electrónica de Psicología Iztacala, 15(3), 1023-1050. https://revistas.unam.mx/index.php/repi/article/viewFile/33643/30711
HEIDEGGER, M. (1927). Sein und Zeit. SCM Press.
HODGSON, J. y McCLAREN, B. J. (2018). Parental experiences after prenatal diagnosis of fetal abnormality. Seminars in Fetal and Neonatal Medicine, 23(2), 150-154. https://doi.org/10.1016/j.siny.2017.11.009
HSIAO, Y. J. (2018). Parental stress in families of children with disabilities. Intervention in School and Clinic, 53(4), 201-205. https://doi.org/10.1177/1053451217712956
HUERTA, Y. y RIVERA, M. E. (2017). Resiliencia, recursos familiares y espirituales en cuidadores de niños con discapacidad. Journal of Behavior, Health and Social Issues, 9(2), 70-81. https://doi.org/10.1016/j.jbhsi.2018.01.005
IMSERSO. (2020). Base estatal de datos de personas con valoración del grado de discapacidad (Informe a 31/12/2018). Ministerio de Derechos Sociales y Agenda. https://www.imserso.es/InterPresent1/groups/imserso/documents/binario/bdepcd_2018.pdf
IZQUIERDO, G. M., RODRÍGUEZ, J. C. R. y FUERTE, J. A. (2015). La fenomenología desde la perspectiva hermenéutica de Heidegger: una propuesta metodológica para la salud pública. Facultad Nacional de Salud Pública: el Escenario para la Salud Pública desde la Ciencia, 33(3), 435-443. https://doi.org/10.17533/udea.rfnsp.v33n3a14
KRUITHOF, K., OLSMAN, E., NIEUWENHUIJSE, A. y WILLEMS, D. (2021). “I hope I’ll outlive him”: a qualitative study of parents’ concerns about being outlived by their child with profound intellectual and multiple disabilities. Journal of Intellectual and Developmental Disability, 1-11. https://doi.org/10.3109/13668250.2021.1920377
LEYVA-LÓPEZ, A., CUPUL-UICAB, L., MELGAR-LEYVA, O., SALDAÑA-MEDINA, C., PIEDRAGIL-GALVÁN, I., ATRIÁN-SALAZAR, M. L., EGUILUZ, I., RIVERA-RIVERA, L. y MÁRQUEZ-CARAVEO, M. E. (2020). Intellectual development disorders: a review of the literature of studies conducted in Mexico between 1999 and 2020. Archivos en Medicina Familiar, 23(1), 45-48. https://www.medigraphic.com/pdfs/medfam/amf-2021/amf211e.pdf
LINCOLN, Y. S. y GUBA, E. G. (1985). Naturalistic inquiry. SAGE Pub.
LUIJKX, J., van der PUTTEN, A. A. y VLASKAMP, C. (2019). A valuable burden? The impact of children with profound intellectual and multiple disabilities on family life. Journal of Intellectual and Developmental Disability, 44(2), 184-189. https://doi.org/10.3109/13668250.2017.1326588
LYOTARD, J. F. (1989). La fenomenología. Paidós.
MAÑAS, M., GONZÁLEZ, B. y CORTÉS, P. (2020). Historias de vida de personas con discapacidad intelectual: entre el acoso y exclusión en la escuela como moduladores de la identidad. Revista Educación, Política y Sociedad, 5(1), 60-84. https://repositorio.uam.es/bitstream/handle/10486/689680/REPS_5_1_4.pdf?sequence=1
MAULIK, P. K., MASCARENHAS, M. N., MATHERS, C. D., DUA, T. y SAXENA, S. (2011). Prevalence of intellectual disability: a meta-analysis of population-based studies. Research in Developmental Disabilities, 32(2), 419-436. https://doi.org/10.1016/j.ridd.2010.12.018
MAULIK, P. K., MASCARENHAS, M. N., MATHERS, C. D., DUA, T. y SAXENA, S. (2013). Prevalence of intellectual disability: a meta-analysis of population-based studies: Corrigendum. Research in Developmental Disabilities, 34(2), 729. https://doi.org/10.1016/j.ridd.2012.10.013
McCONKEY, R., CRAIG, S. y KELLY, C. (2019). The prevalence of intellectual disability: A comparison of national census and register records. Research in Developmental Disabilities, 89, 69-75. https://doi.org/10.1016/j.ridd.2019.03.009
McKINLAY, J., WILSON, C., HENDRY, G. y BALLANTYNE, C. (2022). “It feels like sending your children into the lions’ den” – a qualitative investigation into parental attitudes towards ASD inclusion, and the impact of mainstream education on their child. Research in Developmental Disabilities, 120, 104128. https://doi.org/10.1016/j.ridd.2021.104128
McMAHON, M. y HATTON, C. (2021). A comparison of the prevalence of health problems among adults with and without intellectual disability: a total administrative population study. Journal of Applied Research in Intellectual Disabilities, 34, 316-325. https://doi.org/10.1111/jar.12785
MESSIOU, K., BUI, L. T., AINSCOW, M., GASTEIGER-KLICPERA, B., BEŠI, E., PALECZEK, L., HEDEGAARD-SØRENSEN, L., ULVSETH, H., VITORINO, T., SANTOS, J., SIMON, C., SANDOVAL, M. y ECHEITA, G. (2020). Student diversity and student voice conceptualisations in five
European countries: implications for including all students in schools. European Educational Research Journal, 1-22. https://doi.org/10.1177/1474904120953241
NAVAS, P., ALONSO, M. Á. V., MARTÍNEZ, S., SAINZ, F. y AZA, A. (2017). Derechos y calidad de vida en personas con discapacidad intelectual y mayores necesidades de apoyo. Siglo Cero, 48(4), 7-66. https://doi.org/10.14201/scero2017484766
NOREÑA-PEÑA, A., MORENO, N. A., ROJAS, J. G. y REBOLLEDO-MALPICA, D. M. (2012). Aplicabilidad de los criterios de rigor y éticos en la investigación cualitativa. Aquichan, 12(3), 263-274. https://www.scielo.org.co/scielo.php?script=sci_arttext&pid=S1657-59972012000300006
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