What do a Group of Young Chilean with Down Syndrome Know about Puberty, Relationships and Reproduction?
Abstract
Introduction: living sexuality and affectivity fully is fundamental in every human being, however, people with Down syndrome (DS) have few instances of sexual education and few spaces for socialization to experience it. Objectives: describe the knowledge that young people with DS have on basic issues of puberty, relationships and reproduction. Methodology: qualitative, descriptive, exploratory study in two focus groups of young people with DS, between 13 and 18 years old, separated by gender. The information was recorded, coded according to categories. Results: regarding the word “sexuality”, the women declared that they had not heard it and the men referred to “sex”, “couple relationships”, “love” and “family”. For “pubertal changes”, both groups reported the most visible changes, but nothing regarding reproduction. Only one participant understood the concept of “sexual relationship”. Women considered the “beginning of human life” as a spontaneous generation event and the men came up with a fanciful theory. The family was the main source of information. Discussion: participants showed deficient and infantilized handling of information. Research and development of Sex Education programs are urgent to dignify the sexuality and affectivity of people with DS, from a rights’ perspective.
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AMOR PAN, J. R. (2000). Afectividad y sexualidad en la persona con deficiencia mental (vol. 2). Universidad Pontificia Comillas.
BAINES, S., EMERSON, E., ROBERTSON, J. y HATTON, C. (2018). Sexual activity and sexual health among young adults with and without mild/moderate intellectual disability. BMC Public Health, 18(1), 667. https://doi.org/10.1186/s12889-018-5572-9
BARRIO, E. y MORENO, B. (2014). Sexualidad en personas con síndrome de Down: prácticas, actitudes y conocimientos: un estudio empírico exploratorio. Revista Española sobre Discapacidad Intelectual, 45(252), 8-21.
BORAWSKA CHARKO, M., ROHLEDER, P. y FINLAY, W. (2017). The sexual health knowledge of people with intellectual disabilities: a review. Sexuality Research and Social Policy, 14. https://doi.org/10.1007/s13178-016-0267-4
BROWN, M. y MCCANN, E. (2018). Sexuality issues and the voices of adults with intellectual disabilities: a systematic review of the literature. Research in Developmental Disabilities, 74, 124-138. https://doi.org/10.1016/j.ridd.2018.01.009
BROWN, M. y MCCANN, E. (2019). The views and experiences of families and direct care support workers regarding the expression of sexuality by adults with intellectual disabilities: a narrative review of the international research evidence. Research in Developmental Disabilities, 90, 80-91. https://doi.org/10.1016/j.ridd.2019.04.012
CANALES, M. (2006). Metodologías de investigación social. Lom Ediciones.
CHENG, M. M. y UDRY, J. R. (2003). How much do mentally disabled adolescents know about sex and birth control? Adolescent and Family Health, 3, 28-38.
CLARKE, V. y BRAUN, V. (2014). Thematic analysis. En T. TEO (Ed.), Encyclopedia of Critical Psychology (pp. 1947-1952). Springer. https://doi.org/10.1007/978-1-4614-5583-7_311
COCCHI, G., GUALDI, S., BOWER, C., HALLIDAY, J., JONSSON, B., MYRELID, A. et al. (2010). International trends of Down syndrome 1993-2004: births in relation to maternal age and terminations of pregnancies. Birth defects research. Part A. Clinical and Molecular Teratology, 88(6), 474-479. https://doi.org/10.1002/bdra.20666
COPPUS, A. M. (2013). People with intellectual disability: what do we know about adulthood and life expectancy? Developmental Disabilities Research Reviews, 18(1), 6-16. https://doi.org/10.1002/ddrr.1123
COTTINGHAM, J., KISMODI, E., HILBER, A. M., LINCETTO, O., STAHLHOFER, M. y GRUSKIN, S. (2010). Using human rights for sexual and reproductive health: improving legal and regulatory frameworks. Bulletin of the World Health Organization, 88(7), 551-555. https://doi.org/10.2471/BLT.09.063412
COUWENHOVEN, T. (2007). Teaching children with Down syndrome about their bodies, boundaries, and sexuality. Woodbine House.
ESQUERDA ARESTÉ, M., RUIZ, S., SEGURA, A., PIFARRE, J. y FABREGAT, G. (2021). Espai de Reflexió ètica assistencial de Sant Joan de Déu Terres de Lleida. Recomendaciones éticas con relación a la gestión de la dimensión afectivo-sexual en las personas con discapacidad. Revista Iberoamericana de Bioética, 15, 01-12. https://doi.org/10.14422/rib.i15.y2021.002
GLASSER, B. y STRAUSS, A. (1969). The discovery of grounded theory estrategies for qualitative research. Ed. Aldine Publishing Company.
HERNÁNDEZ, R., FERNÁNDEZ, C. y BAPTISTA, P. (2003). Metodología de la investigación. 3.a ed. McGraw-Hill.
ISLER, A., TAS, F., BEYTUT, D. y CONK, Z. (2009). Sexuality in adolescents with intellectual disabilities. Sexuality and Disability, 27, 27-34.
KAHONDE, C. K., McKENZIE, J. y WILSON, N. J. (2019). Discourse of needs versus discourse of rights: family caregivers responding to the sexuality of young South African adults with intellectual disability. Culture, Health and Sexuality, 21(3), 278-292. https://doi.org/10.1080/13691058.2018.1465202
MCCANN, E., LEE, R. y BROWN, M. (2016). The experiences and support needs of people with intellectual disabilities who identify as LGBT: a review of the literature. Research in Developmental Disabilities, 57, 39-53. https://doi.org/10.1016/j.ridd.2016.06.013
MORRIS, J. K. y ALBERMAN, E. (2009). Trends in Down’s syndrome live births and antenatal diagnoses in England and Wales from 1989 to 2008: analysis of data from the National Down Syndrome Cytogenetic Register. BMJ - Clinical Research, 339, b3794. https://doi.org/10.1136/bmj.b3794
MURPHY, N. A. y ELIAS, E. R. (2006). Sexuality of children and adolescents with developmental disabilities. Pediatrics, 118(1), 398-403. https://doi.org/10.1542/peds.2006-1115
NACIONES UNIDAS. (2006). Convencio?n sobre los Derechos de las Personas con Discapacidad. Disponible en: https://www.un.org/development/desa/disabilities-es/convencion-sobre-los-derechos-de-las-personas-con-discapacidad-2.html
NACIONES UNIDAS. (2016). Comité sobre los Derechos de las Personas con Discapacidad. Observaciones finales sobre el informe inicial de Chile. Disponible en: https://acnudh.org/load/2016/04/CRPD_C_CHL_CO_1_23679_S.pdf
NAZER, H. J. y CIFUENTES, O. L. (2011). Estudio epidemiológico global del síndrome de Down. Revista Chilena de Pediatría, 82(2), 105-112. https://doi.org/10.4067/S0370-41062011000200004
NAZER, H. J. y CIFUENTES, O. L. (2014). Prevalencia al nacimiento de malformaciones congénitas en las maternidades chilenas participantes en el ECLAMC en el período 2001-2010. Revista Médica de Chile, 142(9), 1150-1156. https://doi.org/10.4067/S0034-98872014000900009
PATTON, M. (2002). Qualitative research and evaluation methods. Sage Publications.
RAMOS, B. (2008). Atención integral a personas con discapacidad intelectual en la Orden Hospitalaria. Labor Hospitalaria: Organización y Pastoral de la Salud, 288, 21-26. Disponible en: https://www.ohsjd.es/atencion-integral-personas-discapacidad-intelectual-orden-hospitalaria
RODEN, R. C., SCHMIDT, E. K. y HOLLAND-HALL, C. (2020). Sexual health education for adolescents and young adults with intellectual and developmental disabilities: recommendations for accessible sexual and reproductive health information. The Lancet. Child and Adolescent Health, 4(9), 699-708. https://doi.org/10.1016/S2352-4642(20)30098-5
RODRÍGUEZ MAYORAL, J. M., MORENTIN, R., ARIAS, B. y LÓPEZ SÁNCHEZ, F. (2006). Afectividad y sexualidad en personas con discapacidad intelectual: una propuesta de trabajo. Siglo Cero, 37, 217, 23-40.
SCHALOCK, R. L. y VERDUGO, M. Á. (2007). El concepto de calidad de vida en los servicios y apoyos para personas con discapacidad intelectual. Siglo Cero, 38, 224, 21-36.
SERVICIO NACIONAL DE LA DISCAPACIDAD, DEPARTAMENTO DE ESTUDIOS, MINISTERIO DE DESARROLLO SOCIAL, GOBIERNO DE CHILE. (2015). II Estudio Nacional de la Discapacidad. Disponible en www.senadis.gob.cl
STOFFELEN, J., HERPS, M. A., BUNTINX, W., SCHAAFSMA, D., KOK, G. y CURFS, L. (2017). Sexuality and individual support plans for people with intellectual disabilities. Journal of Intellectual Disability Research - JIDR, 61(12), 1117-1129. https://doi.org/10.1111/jir.12428
STRAUSS, A. y CORBIN, J. (2002). Bases de la investigación cualitativa. Técnicas y procedimientos para desarrollar la teoría fundamentada. Editorial Universidad de Antioquia. 1.ª edición en español.
SZOLLOS, A. A. y MCCABE, M. P. (1995). The sexuality of people with mild intellectual disability: perceptions of clients and caregivers. Australia and New Zealand Journal of Developmental Disabilities, 20(3), 205-222. https://doi.org/10.1080/07263869500035561
VALLES, M. (1999). Técnicas cualitativas de investigación social. Editorial Síntesis.
WALTERS, F. P. y GRAY, S. H. (2018). Addressing sexual and reproductive health in adolescents and young adults with intellectual and developmental disabilities. Current Opinion in Pediatrics, 30(4), 451-458. https://doi.org/10.1097/MOP.0000000000000635
WORLD HEALTH ORGANIZATION. (2005). Strategy to accelerate progress towards the attainment of international development goals and targets related to reproductive health. Reproductive Health Matters, 13(25), 11-18. https://doi.org/10.1016/s0968-8080(05)25166-2
ZAENZ, N. y MORA, M. P. (2019). Limitaciones sociales en los derechos a la sexualidad de las personas con síndrome de Down. Sexualidad, Salud y Sociedad (Rio de Janeiro), 33, 101-117. Epub February 10, 2020. https://doi.org/10.1590/1984-6487.sess.2019.33.06.a
BAINES, S., EMERSON, E., ROBERTSON, J. y HATTON, C. (2018). Sexual activity and sexual health among young adults with and without mild/moderate intellectual disability. BMC Public Health, 18(1), 667. https://doi.org/10.1186/s12889-018-5572-9
BARRIO, E. y MORENO, B. (2014). Sexualidad en personas con síndrome de Down: prácticas, actitudes y conocimientos: un estudio empírico exploratorio. Revista Española sobre Discapacidad Intelectual, 45(252), 8-21.
BORAWSKA CHARKO, M., ROHLEDER, P. y FINLAY, W. (2017). The sexual health knowledge of people with intellectual disabilities: a review. Sexuality Research and Social Policy, 14. https://doi.org/10.1007/s13178-016-0267-4
BROWN, M. y MCCANN, E. (2018). Sexuality issues and the voices of adults with intellectual disabilities: a systematic review of the literature. Research in Developmental Disabilities, 74, 124-138. https://doi.org/10.1016/j.ridd.2018.01.009
BROWN, M. y MCCANN, E. (2019). The views and experiences of families and direct care support workers regarding the expression of sexuality by adults with intellectual disabilities: a narrative review of the international research evidence. Research in Developmental Disabilities, 90, 80-91. https://doi.org/10.1016/j.ridd.2019.04.012
CANALES, M. (2006). Metodologías de investigación social. Lom Ediciones.
CHENG, M. M. y UDRY, J. R. (2003). How much do mentally disabled adolescents know about sex and birth control? Adolescent and Family Health, 3, 28-38.
CLARKE, V. y BRAUN, V. (2014). Thematic analysis. En T. TEO (Ed.), Encyclopedia of Critical Psychology (pp. 1947-1952). Springer. https://doi.org/10.1007/978-1-4614-5583-7_311
COCCHI, G., GUALDI, S., BOWER, C., HALLIDAY, J., JONSSON, B., MYRELID, A. et al. (2010). International trends of Down syndrome 1993-2004: births in relation to maternal age and terminations of pregnancies. Birth defects research. Part A. Clinical and Molecular Teratology, 88(6), 474-479. https://doi.org/10.1002/bdra.20666
COPPUS, A. M. (2013). People with intellectual disability: what do we know about adulthood and life expectancy? Developmental Disabilities Research Reviews, 18(1), 6-16. https://doi.org/10.1002/ddrr.1123
COTTINGHAM, J., KISMODI, E., HILBER, A. M., LINCETTO, O., STAHLHOFER, M. y GRUSKIN, S. (2010). Using human rights for sexual and reproductive health: improving legal and regulatory frameworks. Bulletin of the World Health Organization, 88(7), 551-555. https://doi.org/10.2471/BLT.09.063412
COUWENHOVEN, T. (2007). Teaching children with Down syndrome about their bodies, boundaries, and sexuality. Woodbine House.
ESQUERDA ARESTÉ, M., RUIZ, S., SEGURA, A., PIFARRE, J. y FABREGAT, G. (2021). Espai de Reflexió ètica assistencial de Sant Joan de Déu Terres de Lleida. Recomendaciones éticas con relación a la gestión de la dimensión afectivo-sexual en las personas con discapacidad. Revista Iberoamericana de Bioética, 15, 01-12. https://doi.org/10.14422/rib.i15.y2021.002
GLASSER, B. y STRAUSS, A. (1969). The discovery of grounded theory estrategies for qualitative research. Ed. Aldine Publishing Company.
HERNÁNDEZ, R., FERNÁNDEZ, C. y BAPTISTA, P. (2003). Metodología de la investigación. 3.a ed. McGraw-Hill.
ISLER, A., TAS, F., BEYTUT, D. y CONK, Z. (2009). Sexuality in adolescents with intellectual disabilities. Sexuality and Disability, 27, 27-34.
KAHONDE, C. K., McKENZIE, J. y WILSON, N. J. (2019). Discourse of needs versus discourse of rights: family caregivers responding to the sexuality of young South African adults with intellectual disability. Culture, Health and Sexuality, 21(3), 278-292. https://doi.org/10.1080/13691058.2018.1465202
MCCANN, E., LEE, R. y BROWN, M. (2016). The experiences and support needs of people with intellectual disabilities who identify as LGBT: a review of the literature. Research in Developmental Disabilities, 57, 39-53. https://doi.org/10.1016/j.ridd.2016.06.013
MORRIS, J. K. y ALBERMAN, E. (2009). Trends in Down’s syndrome live births and antenatal diagnoses in England and Wales from 1989 to 2008: analysis of data from the National Down Syndrome Cytogenetic Register. BMJ - Clinical Research, 339, b3794. https://doi.org/10.1136/bmj.b3794
MURPHY, N. A. y ELIAS, E. R. (2006). Sexuality of children and adolescents with developmental disabilities. Pediatrics, 118(1), 398-403. https://doi.org/10.1542/peds.2006-1115
NACIONES UNIDAS. (2006). Convencio?n sobre los Derechos de las Personas con Discapacidad. Disponible en: https://www.un.org/development/desa/disabilities-es/convencion-sobre-los-derechos-de-las-personas-con-discapacidad-2.html
NACIONES UNIDAS. (2016). Comité sobre los Derechos de las Personas con Discapacidad. Observaciones finales sobre el informe inicial de Chile. Disponible en: https://acnudh.org/load/2016/04/CRPD_C_CHL_CO_1_23679_S.pdf
NAZER, H. J. y CIFUENTES, O. L. (2011). Estudio epidemiológico global del síndrome de Down. Revista Chilena de Pediatría, 82(2), 105-112. https://doi.org/10.4067/S0370-41062011000200004
NAZER, H. J. y CIFUENTES, O. L. (2014). Prevalencia al nacimiento de malformaciones congénitas en las maternidades chilenas participantes en el ECLAMC en el período 2001-2010. Revista Médica de Chile, 142(9), 1150-1156. https://doi.org/10.4067/S0034-98872014000900009
PATTON, M. (2002). Qualitative research and evaluation methods. Sage Publications.
RAMOS, B. (2008). Atención integral a personas con discapacidad intelectual en la Orden Hospitalaria. Labor Hospitalaria: Organización y Pastoral de la Salud, 288, 21-26. Disponible en: https://www.ohsjd.es/atencion-integral-personas-discapacidad-intelectual-orden-hospitalaria
RODEN, R. C., SCHMIDT, E. K. y HOLLAND-HALL, C. (2020). Sexual health education for adolescents and young adults with intellectual and developmental disabilities: recommendations for accessible sexual and reproductive health information. The Lancet. Child and Adolescent Health, 4(9), 699-708. https://doi.org/10.1016/S2352-4642(20)30098-5
RODRÍGUEZ MAYORAL, J. M., MORENTIN, R., ARIAS, B. y LÓPEZ SÁNCHEZ, F. (2006). Afectividad y sexualidad en personas con discapacidad intelectual: una propuesta de trabajo. Siglo Cero, 37, 217, 23-40.
SCHALOCK, R. L. y VERDUGO, M. Á. (2007). El concepto de calidad de vida en los servicios y apoyos para personas con discapacidad intelectual. Siglo Cero, 38, 224, 21-36.
SERVICIO NACIONAL DE LA DISCAPACIDAD, DEPARTAMENTO DE ESTUDIOS, MINISTERIO DE DESARROLLO SOCIAL, GOBIERNO DE CHILE. (2015). II Estudio Nacional de la Discapacidad. Disponible en www.senadis.gob.cl
STOFFELEN, J., HERPS, M. A., BUNTINX, W., SCHAAFSMA, D., KOK, G. y CURFS, L. (2017). Sexuality and individual support plans for people with intellectual disabilities. Journal of Intellectual Disability Research - JIDR, 61(12), 1117-1129. https://doi.org/10.1111/jir.12428
STRAUSS, A. y CORBIN, J. (2002). Bases de la investigación cualitativa. Técnicas y procedimientos para desarrollar la teoría fundamentada. Editorial Universidad de Antioquia. 1.ª edición en español.
SZOLLOS, A. A. y MCCABE, M. P. (1995). The sexuality of people with mild intellectual disability: perceptions of clients and caregivers. Australia and New Zealand Journal of Developmental Disabilities, 20(3), 205-222. https://doi.org/10.1080/07263869500035561
VALLES, M. (1999). Técnicas cualitativas de investigación social. Editorial Síntesis.
WALTERS, F. P. y GRAY, S. H. (2018). Addressing sexual and reproductive health in adolescents and young adults with intellectual and developmental disabilities. Current Opinion in Pediatrics, 30(4), 451-458. https://doi.org/10.1097/MOP.0000000000000635
WORLD HEALTH ORGANIZATION. (2005). Strategy to accelerate progress towards the attainment of international development goals and targets related to reproductive health. Reproductive Health Matters, 13(25), 11-18. https://doi.org/10.1016/s0968-8080(05)25166-2
ZAENZ, N. y MORA, M. P. (2019). Limitaciones sociales en los derechos a la sexualidad de las personas con síndrome de Down. Sexualidad, Salud y Sociedad (Rio de Janeiro), 33, 101-117. Epub February 10, 2020. https://doi.org/10.1590/1984-6487.sess.2019.33.06.a
Palomer Music, M., Berger Correa, B., Romero Rojas, V., & Lizama, M. (2022). What do a Group of Young Chilean with Down Syndrome Know about Puberty, Relationships and Reproduction?. Siglo Cero, 53(2), 21–39. https://doi.org/10.14201/scero20225322139
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