Bereavement process of people with intellectual disability
Abstract The main goal of this work is focused on detecting the support needs of people with intellectual disabilities during the bereavement process in order to guide about professional interventions and practices aimed to provide more adequate individualized support to their real needs. The sample consists of 93 adults with ID, with ages ranging from 21 to 72 years old (M = 49.9; SD = 11.79), who have suffered the loss of a significant person. The professionals who worked with them and knew them well completed two questionnaires: Staff Attitude Questionnaire (SAQ) and Bereavement Needs Assessment (BNAT). Beside descriptive analyses, results were analyzed according to several variables (i.e., gender, age, level of intellectual disability, and level of dependency). Level of intellectual disability and level of dependency were the ones that resulted significant. In order to provide the best answer to their needs, good practices are suggested such as facilitating the understanding of loss, helping them express feelings and emotions, dealing with each case individually, and encouraging to continue education about death.
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BLACKMAN, N. (2008). The development of an assessment tool for the bereavement needs of people with learning disabilities. British Journal of Learning Disabilities, 36 (3), 165-170. https://doi.org/10.1111/j.1468-3156.2008.00514.x
BLACKMAN, N. (2013). The Use of Psychotherapy in Supporting People with Intellectual Disabilities who Have Experienced Bereavement (Tesis doctoral). Recuperado de https://uhra. herts.ac.uk/bitstream/handle/2299/9801/07165752%20Blackman%20Noelle%20-%20 final%20PhD%20submission.pdf?sequence=1.
BRICKELL, C. y MUNIR, K. (2008). El duelo y sus complicaciones en las personas con discapacidad intelectual. Revista Síndrome de Down: Revista Espa-ola de Investigación e Información sobre el Síndrome de Down, 25 (97), 68-76.
CONBOY-HILL, S. (1992). Grief, loss and learning disabilities. En A. Waitman y S. Conboyhill (Eds.), Psychotherapy and Mental Handicap (pp. 150-170). Londres: Sage.
COCHRANE, V. (1995). Bereavement and people with learning disabilities: a review of the literature and implications for clinical psychologists. Clinical Psychology Forum, 79, 6-10.
DELORME, M. (1999). Ageing and people with developmental disabilities. En I. brown y M. Percy (Eds.), Developmental Disabilities in Ontario (pp. 189-195). Toronto: Front Porch Publishing.
DODD, P., DOWLING, S. y HOLLINS, S. (2005). A review of the emotional, psychiatric and behavioural responses to bereavement in people with intellectual disabilities. Journal of Intellectual Disability Research, 49 (7), 537-543. https://doi.org/10.1111/j.1365-2788.2005.00702.x
FINDLAY, L., WILLIAMS, A. C. de C., BAUM, S. y SCIOR, K. (2015). Caregiver experiences of supporting adults with intellectual disabilities in pain. Journal of Applied Research in Intellectual Disabilities, 28, 111-120. https://doi.org/10.1111/jar.12109
FORRESTER-JoneS, R. (2013). The road barely taken: funerals, and people with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities, 26 (3), 243-256. https://doi.org/10.1111/jar.12022
HANDLEY, E. y HUTCHINSON, N. (2013). The experience of careers in supporting people with intellectual disabilities through the process of bereavement: an interpretative phenomenological analysis. Journal of Applied Research in Intellectual Disabilities, 26 (3), 186-194. https://doi.org/10.1111/jar.12025
HERRERO, P. R., Gascón, A. D. L. H. y Gasset, D. I. (2013). Orientaciones pedagógicas para el acompa-amiento educativo por duelo a personas adultas con discapacidad intelectual. Teoría de la Educación. Revista Interuniversitaria, 25 (1), 173-189.
HOLLINS S. y ESTERHUYZEN, A. (1997). Bereavement and grief in adults with intellectual disabilities. British Journal of Psychiatry, 170, 497-501. https://doi.org/10.1192/bjp.170.6.497
HOLLINS, S. y KLOEPPEL, D. A. (1989). Double handicap: mental retardation and death in the family. Death Studies, 13 (1), 31-38. https://doi.org/10.1080/07481188908252277
JAMES, I. A. (1995). Helping people with learning disability to cope with bereavement. British Journal of Learning Disabilities, 23, 74-78. https://doi.org/10.1111/j.1468-3156.1995.tb00168.x
MCEVOY, J. (1989). Investigating the concept of death in adults who are mentally handicapped. The British Journal of Mental Subnormality, 35, 115-121. https://doi.org/10.1179/bjms.1989.016
MCEVOY, J., GUERIN, S., DODD, P. y HILLERY, J. (2010). Supporting adults with an intellectual disability during experiences of loss and bereavement: staff views, experiences and suggestions for training. Journal of Applied Research in Intellectual Disabilities, 23 (6), 585-596. https://doi.org/10.1111/j.1468-3148.2010.00557.x
MCEVOY, J., MACHALE, R. y TIERNEY, E. (2012). Concept of death and perceptions of bereavement in adults with intellectual disabilities. Journal of Intellectual Disability Research, 56 (2), 191-203. https://doi.org/10.1111/j.1365-2788.2011.01456.x
MACHALE, R., MCEVOY, J. y TIERNEY, E. (2009). Care giver perceptions of the understanding of death and need for bereavement support in adults with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities, 22 (6), 574-581. https://doi.org/10.1111/j.1468-3148.2009.00513.x
MCRITCHIE, R., MCKENZIE, K., QUAYLE, E., HARLIN, M. y NEUMANN, K. (2014). How adults with an intellectual disability experience bereavement and grief: a qualitative exploration. Death studies, 38 (3), 179-185. https://doi.org/10.1080/07481187.2012.738772
MURRAY, G. C., MCKENZIE, K. y QUIGLEY, A. (2000). An examination of the knowledge and understanding of health and social care staff about the grieving process in individuals with a learning disability. Journal of Intellectual Disabilities, 4 (1), 77-90. https://doi.org/10.1177/146900470000400106
PARKES, C. M. (2003, marzo). Attachment patterns in childhood relationships, coping and psychological states in adults seeking psychiatric help after bereavement. Comunicación en AGM of West Hertfordshire Bereavement Network, St Albans, Reino Unido.
READ, S. y ELLIOTT, A. (2007). Exploring a continuum of support for bereaved people with intellectual disabilities: A strategic approach. Journal of Intellectual Disabilities, 11, 167-181. RODRÍGUEZ, P. (2012). Pedagogía de la muerte en personas con discapacidad intelectual. Elaboración, aplicación y evaluación de un programa educativo (Tesis doctoral). Recuperado de https://repositorio.uam.es/handle/10486/9104.
RODRÍGUEZ, P., HERRÁN, A. D. L. e IZUZQUIZA, D. (2013). "Y si me muero... ¿dónde está mi futuro?". Hacia una educación para la muerte en personas con discapacidad intelectual. Recuperado de http://revistas.uned.es/index.php/educacionXX1/article/view/729.
Rodríguez, P., Izuzquiza, D. y De la Herrán, A. (2015). Concept of death in young people with intellectual disability: a contribution to the pedagogy on death. Siglo Cero, 46 (1), 67-80.
RUIZ, M. N. S. y SAINZ, F. (2008). Apoyo en el proceso de duelo de personas con discapacidad intelectual. Recuperado de http://www.asociacionceom.org/feaps/FeapsDocumentos.NS F/08db27d07184be50c125746400284778/dddb2979a1e7d585c12578fe003361fc/$FILE/ Apoyoalduelo_pdi.pdf.
SIMÓN, M. N. (2008). Apoyo en el proceso de duelo de personas con discapacidad intelectual. Recuperado de http://www.asociacionceom.org/feaps/FeapsDocumentos.NSF/08db27d 07184be50c125746400284778/dddb2979a1e7d585c12578fe003361fc/$FILE/Apoyoalduelo_pdi.pdf.
STANCLIFFE, R., WIESE, M., READ, S., JELTES, G. y CLAYTON, J. (2016). Knowing, planning for and fearing death: Do adults with intellectual disability and disability staff differ? Research in Developmental Disabilities, 49-50, 47-59. https://doi.org/10.1016/j.ridd.2015.11.016
Stylianos, S. K. y Vachon, M. L. S. (1993). The role of social support in bereavement. En M. S. Stroebe, W. Stroebe y R. O. Hansson (Eds.), Handbook of bereavement: Theory, research, and intervention (pp. 397-410). Cambridge: Cambridge University Press. https://doi.org/10.1017/CBO9780511664076.027
TIZÓN, J. L. (2004). Pérdida, pena, duelo. Vivencias, investigación y asistencia. Barcelona: Paidós.
URIBE-RODRÍGUEZ, A. F., VALDERRAMA, L., DURÁN, D. M., GALEANO-MONROY, C. y GAMBOA, K. (2008). Diferencias evolutivas en la actitud ante la muerte entre adultos jóvenes y adultos mayores. Acta Colombiana de Psicología, 11 (1), 119-126.
WATTERS, L., McKenzie, K. y WRIGHT, R. (2012). The impact of staff training on the knowledge of support staff in relation to bereavement and people with an intellectual disability. British Journal of Learning Disabilities, 3 (40), 194-200. https://doi.org/10.1111/j.1468-3156.2011.00693.x
WIESE, M., DEW, A., STANCLIFFE, R. J., HOWARD, G. Y BALANDIN, S. (2012). 'If and when': experiences of community living staff engaging older people with intellectual disability to know about dying. Journal of Intellectual Disability Research, 57 (10), 980-992. https://doi.org/10.1111/j.1365-2788.2012.01593.x
BLACKMAN, N. (2013). The Use of Psychotherapy in Supporting People with Intellectual Disabilities who Have Experienced Bereavement (Tesis doctoral). Recuperado de https://uhra. herts.ac.uk/bitstream/handle/2299/9801/07165752%20Blackman%20Noelle%20-%20 final%20PhD%20submission.pdf?sequence=1.
BRICKELL, C. y MUNIR, K. (2008). El duelo y sus complicaciones en las personas con discapacidad intelectual. Revista Síndrome de Down: Revista Espa-ola de Investigación e Información sobre el Síndrome de Down, 25 (97), 68-76.
CONBOY-HILL, S. (1992). Grief, loss and learning disabilities. En A. Waitman y S. Conboyhill (Eds.), Psychotherapy and Mental Handicap (pp. 150-170). Londres: Sage.
COCHRANE, V. (1995). Bereavement and people with learning disabilities: a review of the literature and implications for clinical psychologists. Clinical Psychology Forum, 79, 6-10.
DELORME, M. (1999). Ageing and people with developmental disabilities. En I. brown y M. Percy (Eds.), Developmental Disabilities in Ontario (pp. 189-195). Toronto: Front Porch Publishing.
DODD, P., DOWLING, S. y HOLLINS, S. (2005). A review of the emotional, psychiatric and behavioural responses to bereavement in people with intellectual disabilities. Journal of Intellectual Disability Research, 49 (7), 537-543. https://doi.org/10.1111/j.1365-2788.2005.00702.x
FINDLAY, L., WILLIAMS, A. C. de C., BAUM, S. y SCIOR, K. (2015). Caregiver experiences of supporting adults with intellectual disabilities in pain. Journal of Applied Research in Intellectual Disabilities, 28, 111-120. https://doi.org/10.1111/jar.12109
FORRESTER-JoneS, R. (2013). The road barely taken: funerals, and people with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities, 26 (3), 243-256. https://doi.org/10.1111/jar.12022
HANDLEY, E. y HUTCHINSON, N. (2013). The experience of careers in supporting people with intellectual disabilities through the process of bereavement: an interpretative phenomenological analysis. Journal of Applied Research in Intellectual Disabilities, 26 (3), 186-194. https://doi.org/10.1111/jar.12025
HERRERO, P. R., Gascón, A. D. L. H. y Gasset, D. I. (2013). Orientaciones pedagógicas para el acompa-amiento educativo por duelo a personas adultas con discapacidad intelectual. Teoría de la Educación. Revista Interuniversitaria, 25 (1), 173-189.
HOLLINS S. y ESTERHUYZEN, A. (1997). Bereavement and grief in adults with intellectual disabilities. British Journal of Psychiatry, 170, 497-501. https://doi.org/10.1192/bjp.170.6.497
HOLLINS, S. y KLOEPPEL, D. A. (1989). Double handicap: mental retardation and death in the family. Death Studies, 13 (1), 31-38. https://doi.org/10.1080/07481188908252277
JAMES, I. A. (1995). Helping people with learning disability to cope with bereavement. British Journal of Learning Disabilities, 23, 74-78. https://doi.org/10.1111/j.1468-3156.1995.tb00168.x
MCEVOY, J. (1989). Investigating the concept of death in adults who are mentally handicapped. The British Journal of Mental Subnormality, 35, 115-121. https://doi.org/10.1179/bjms.1989.016
MCEVOY, J., GUERIN, S., DODD, P. y HILLERY, J. (2010). Supporting adults with an intellectual disability during experiences of loss and bereavement: staff views, experiences and suggestions for training. Journal of Applied Research in Intellectual Disabilities, 23 (6), 585-596. https://doi.org/10.1111/j.1468-3148.2010.00557.x
MCEVOY, J., MACHALE, R. y TIERNEY, E. (2012). Concept of death and perceptions of bereavement in adults with intellectual disabilities. Journal of Intellectual Disability Research, 56 (2), 191-203. https://doi.org/10.1111/j.1365-2788.2011.01456.x
MACHALE, R., MCEVOY, J. y TIERNEY, E. (2009). Care giver perceptions of the understanding of death and need for bereavement support in adults with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities, 22 (6), 574-581. https://doi.org/10.1111/j.1468-3148.2009.00513.x
MCRITCHIE, R., MCKENZIE, K., QUAYLE, E., HARLIN, M. y NEUMANN, K. (2014). How adults with an intellectual disability experience bereavement and grief: a qualitative exploration. Death studies, 38 (3), 179-185. https://doi.org/10.1080/07481187.2012.738772
MURRAY, G. C., MCKENZIE, K. y QUIGLEY, A. (2000). An examination of the knowledge and understanding of health and social care staff about the grieving process in individuals with a learning disability. Journal of Intellectual Disabilities, 4 (1), 77-90. https://doi.org/10.1177/146900470000400106
PARKES, C. M. (2003, marzo). Attachment patterns in childhood relationships, coping and psychological states in adults seeking psychiatric help after bereavement. Comunicación en AGM of West Hertfordshire Bereavement Network, St Albans, Reino Unido.
READ, S. y ELLIOTT, A. (2007). Exploring a continuum of support for bereaved people with intellectual disabilities: A strategic approach. Journal of Intellectual Disabilities, 11, 167-181. RODRÍGUEZ, P. (2012). Pedagogía de la muerte en personas con discapacidad intelectual. Elaboración, aplicación y evaluación de un programa educativo (Tesis doctoral). Recuperado de https://repositorio.uam.es/handle/10486/9104.
RODRÍGUEZ, P., HERRÁN, A. D. L. e IZUZQUIZA, D. (2013). "Y si me muero... ¿dónde está mi futuro?". Hacia una educación para la muerte en personas con discapacidad intelectual. Recuperado de http://revistas.uned.es/index.php/educacionXX1/article/view/729.
Rodríguez, P., Izuzquiza, D. y De la Herrán, A. (2015). Concept of death in young people with intellectual disability: a contribution to the pedagogy on death. Siglo Cero, 46 (1), 67-80.
RUIZ, M. N. S. y SAINZ, F. (2008). Apoyo en el proceso de duelo de personas con discapacidad intelectual. Recuperado de http://www.asociacionceom.org/feaps/FeapsDocumentos.NS F/08db27d07184be50c125746400284778/dddb2979a1e7d585c12578fe003361fc/$FILE/ Apoyoalduelo_pdi.pdf.
SIMÓN, M. N. (2008). Apoyo en el proceso de duelo de personas con discapacidad intelectual. Recuperado de http://www.asociacionceom.org/feaps/FeapsDocumentos.NSF/08db27d 07184be50c125746400284778/dddb2979a1e7d585c12578fe003361fc/$FILE/Apoyoalduelo_pdi.pdf.
STANCLIFFE, R., WIESE, M., READ, S., JELTES, G. y CLAYTON, J. (2016). Knowing, planning for and fearing death: Do adults with intellectual disability and disability staff differ? Research in Developmental Disabilities, 49-50, 47-59. https://doi.org/10.1016/j.ridd.2015.11.016
Stylianos, S. K. y Vachon, M. L. S. (1993). The role of social support in bereavement. En M. S. Stroebe, W. Stroebe y R. O. Hansson (Eds.), Handbook of bereavement: Theory, research, and intervention (pp. 397-410). Cambridge: Cambridge University Press. https://doi.org/10.1017/CBO9780511664076.027
TIZÓN, J. L. (2004). Pérdida, pena, duelo. Vivencias, investigación y asistencia. Barcelona: Paidós.
URIBE-RODRÍGUEZ, A. F., VALDERRAMA, L., DURÁN, D. M., GALEANO-MONROY, C. y GAMBOA, K. (2008). Diferencias evolutivas en la actitud ante la muerte entre adultos jóvenes y adultos mayores. Acta Colombiana de Psicología, 11 (1), 119-126.
WATTERS, L., McKenzie, K. y WRIGHT, R. (2012). The impact of staff training on the knowledge of support staff in relation to bereavement and people with an intellectual disability. British Journal of Learning Disabilities, 3 (40), 194-200. https://doi.org/10.1111/j.1468-3156.2011.00693.x
WIESE, M., DEW, A., STANCLIFFE, R. J., HOWARD, G. Y BALANDIN, S. (2012). 'If and when': experiences of community living staff engaging older people with intellectual disability to know about dying. Journal of Intellectual Disability Research, 57 (10), 980-992. https://doi.org/10.1111/j.1365-2788.2012.01593.x
Muñiz Fernández, V., Alcedo Rodríguez, M. Ángeles, & Gómez Sánchez, L. E. (2017). Bereavement process of people with intellectual disability. Siglo Cero, 48(3), 7–25. https://doi.org/10.14201/scero2017483725
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