Research with Persons with Intellectual Disability. Methodological and Ethical Questions
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Published:
Jan 16, 2020
This work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.
Keywords:
persons with intellectual disability, self-report instruments, interviews, reliability, validity, research consent
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Abstract
The article analyzes selected methodological and ethical problems that may accompany research with persons with intellectual disabilities. The article has a review form. Issues such as errors appearing in self-report research and related difficulties that may be experienced by people with intellectual disabilities are discussed. The general methods of counteracting them are also presented. Some ethical issues in the field of research with the participation of representatives of this group were indicated, among others expressing informed consent, the way of recruiting respondents.
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References
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Assessment of older adults with diminished capacity: a handbook for psychologist. (2008), AP, https:// www.apa.org/pi/aging/.../assessment/capacity-psychologist-handbook.pdf (dostęp: 24.05.2015).
Balboni, G., Coscarelli, A., Giunti, G., Schalock, R.L. (2013). The assessment of the quality of life of adults with intellectual disability: the use of self-report and report of others assessment strategies. Research in Developmental Disabilities, 34(11), 4248-4254.
Bigby, C. (2008). Know well by no-one: trends in the informal social networks of middle-aged and older people with intellectual disability five years after moving to the community. Journal of Intellectual and Developmental Disability, 33(2), 148-157.
Bond, J.R. (2009). How adults with learning disabilities view living independently. British Journal of Learning Disabilities, 38(4), 286-292.
Brewster, S.J. (2004). Putting words into their mouths? Interviewing people with learning disabilities and little/no speech. British Journal of Learning Disabilities, 32(4), 166-169.
Caldwell, K. (2014). Dyadic interviewing: a technique valuing interdependence in interviews with individuals with intellectual disabilities. Qualitative Research, 14(4), 488-507.
Cameron, L., Murphy, J. (2006). Obtaining consent to participate in research: the issues involved in including people with a range of learning and communication disabilities. British Journal of Learning Disabilities, 35(2), 113-120.
Claes, C., Vandevelde, S., Van Hove, G., van Loon, J., Verschelden, G. (2012). Relationship between self-report and proxy ratings on assessed personal quality of life-related outcomes. Journal of Policy and Practice in Intellectual Disabilities, 9(3), 159-165.
Clare, I.C., Gudjonsson, G.H. (1993). Interrogative suggestibility, confabulation, and acquiescence in people with mild learning disabilities (mental handicap): Implications for reliability during police interrogations. British Journal of Clinical Psychology, 32(3), 295-301.
Coons, K.D., Watson, S.L. (2013). Conducting research with individuals who have intellectual disabilities: ethical and practical implications for qualitative research. Journal on Developmental Disabilities, 19(2), 14-24.
Cummins, R.A., Lau, A.D. (2003). Community integration or community exposure? A review and discussion in relation to people with an intellectual disability. Journal of Applied Research in Intellectual Disabilities, 16(2), 145-157.
Demetriou,C., Uzun Ozer, B., Essau, C.A. (2015) Self-report questionnaires. W: R.L. Cautin, S.O. Lilienfeld (red.), The encyclopedia of clinical psychology (s. 1-6). First Edition. https://www. researchgate.net/profile/Bilge_Oezer/publication/313966621_SelfReport_Questionnaires/links/5a0ab 61da6fdcc2736dec750/Self-Report-Questionnaires.pdf (dostęp: 28.11.2018).
Everington, C., Fulero, S.M. (1999). Competence to confess: measuring understanding and suggestibility of defendants with mental retardation. Mental Retardation, 37(3), 212-220.
Finlay, W.M.L., Lyons, E. (2001). Methodological issues in interviewing and using self-report scales with people with mental retardation. Psychological Assessment, 13(3), 319-335.
Finlay, W.M.L., Lyons, E. (2002). Acquiescence in interviews with people with mental retardation. Mental Retardation, 40(1), 14-29.
Hays, S-J., Murphy, G., Sinclair, N. (2003). Going ethical approval for research into sensitive topics: ‘two strikes and you’re out?’ British Journal of Learning Disabilities, 31, 181-189.
Harris, J. (2003). Time to make up your mind: why choosing is difficult. British Journal of Learning Disabilities, 3(1), 3-8.
Hartley, S.L., MacLean, W.E. (2006). A review of the reliability and validity of Likert-type scales for people with intellectual disability. Journal of Intellectual Disability Research, 50(11), 813-827.
Holland, A.J., Hon, J., Huppert, F.H., Stevens, F. (2005). Incidence and course of dementia in people with Down’s syndrome: findings form a population based study. Journal of Intellectual Disability Research, 44(2), 138-146.
Hollomotz, A. (2018). Successful interviews with people with intellectual disability. Qualitative Research, 18(2), 153-170.
Irvine, A. (2010). Conducting qualitative research with individuals with developmental disabilities: methodological and ethical considerations. Developmental Disabilities Bulletin, 38(1-2), 21-34.
Johnson, K., Minogue, G., Hopklins, R. (2014). Inclusive research: making a difference to policy and legislation. Journal of Applied Research in Intellectual Disabilities, 27(1), 76-84.
Kamstra, A., van der Putten, A.A.J., Vlaskamp, C. (2015). The structure of informal social networks of persons with profound intellectual and multiple disabilities. Journal of Applied Research in Intellectual Disabilities, 28(3), 249-256.
Kishore, M.T., Nizamie, S.H., Nizamie, A. (2005). The behavioural profile of psychiatric disorders in persons with intellectual disability. Journal of Intellectual Disability Research, 49(11), 852-857.
Kittelsaa, A.M. (2003). Żyjąc w Norwegii z umiarkowaną niepełnosprawnością intelektualną W: A. Gustavsson, J. Tøssebro, E. Zakrzewska-Manterys (red.), Niepełnosprawność intelektualna a style życia. Perspektywy podmiotowe, wybory życiowe, systemy usług w Szwecji, Norwegii i w Polsce (s. 57-88). Warszawa: Wydawnictwo Instytutu Filozofii i Socjologii PAN.
Langlois, L., Martin, L. (2008). Relationship between diagnostic criteria, depressive equivalents and diagnosis of depression among older adults with intellectual disability. Journal of Intellectual Disability Research, 52(11), 896-904.
Lesseliers, J., Van Hove, G., Vandevelde, S. (2009). Regranting identity to the outgraced: narratives of persons with learning disabilities: methodological considerations. Disability and Society, 24(4), 411-423.
Lunsky, Y., Bramston, P. (2006). A preliminary study of perceived stress in adults with intellectual disabilities according to self-report and informant ratings. Journal of Intellectual and Developmental Disability, 31(1), 20-27.
Matikka, L.M., Vesala, H.T. (1997). Acquiescence in quality-of-life interviews with adults who have mental retardation. Mental Retardation, 35(2), 75-82.
Murphy, J., Cameron, L., Watson, J., Markova, I. (b.r.). Evaluating the effectiveness of Talking Mats as a communication resource to enable people with an intellectual disability to express their views on Life Planning. Final report form. http://www.talkingmats.com/wp-content/ uploads/2013/09/Effectiveness-of-TM-and-LD-final-report.pdf. (dostęp: 5.01.2019).
Nind, M. (2008). Conducting qualitative research with people with learning, communication and other disabilities: methodological challenges. National Centre for Research Methods. http:// eprints.ncrm.ac.uk/491/1/MethodsReviewPaperNCRM-012.pdf (dostęp: 28.11.2018)
Parchomiuk, M. (2014). „Nic o nas bez nas”. Udział osób z niepełnosprawnością intelektualną w badaniach. Człowiek – Niepełnosprawność – Społeczeństwo, 3(25), 35-54.
Parchomiuk, M. (2016). Seksualność człowieka z niepełnosprawnością intelektualną. Kraków: Impuls.
Perkins, E.A. (2007). Self- and proxy reports across three populations: older adults, persons with Alzheimer’s Disease, and persons with intellectual disabilities. Journal of Policy and Practice in Intellectual Disabilities, 4(1), 1-10.
Perry, J., Felce, D. (2002). Subjective and objective quality of life assessment: responsiveness. Response bias, and resident: proxy concordance. Mental Retardation, 40(6), 445-456.
Rapley, M., Antaki, C. (1996). A conversation analysis of the ‘‘acquiescence’’ of people with learning disabilities. Journal of Community and Applied Social Psychology, 6(3), 207-227.
Rose, J., Willner, P., Shead, J. (2013). Different factors influence self-reports and third-party reports of anger by adults with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities, 26(5), 410-419.
Sigelman, C.K., Winer, J.L., Schoenrock, C.J. (1982). The responsiveness of mentally retarded persons to questions. Education and Training of the Mentally Retarded, 17(2), 120-124.
Stalker, K. (1998). Some ethical and methodological issues in research with people with learning difficulties. Disability and Society, 13(1), 5-19.
Stancliffe, R.J., Wilson, N.J., Bigby, C., Balandin, S., Craig, D. (2014). Responsiveness to self-report questions about loneliness: a comparison of mainstream and intellectual disability-specific instruments. Journal of Intellectual Disability Research, 58(5), 399-405.
Yan, E.G., Munir, K.M. (2004). Regulatory and ethical principles in research involving children and individuals with developmental disabilities. Ethics and Behavior, 14(1), 31-49.
Assessment of older adults with diminished capacity: a handbook for psychologist. (2008), AP, https:// www.apa.org/pi/aging/.../assessment/capacity-psychologist-handbook.pdf (dostęp: 24.05.2015).
Balboni, G., Coscarelli, A., Giunti, G., Schalock, R.L. (2013). The assessment of the quality of life of adults with intellectual disability: the use of self-report and report of others assessment strategies. Research in Developmental Disabilities, 34(11), 4248-4254.
Bigby, C. (2008). Know well by no-one: trends in the informal social networks of middle-aged and older people with intellectual disability five years after moving to the community. Journal of Intellectual and Developmental Disability, 33(2), 148-157.
Bond, J.R. (2009). How adults with learning disabilities view living independently. British Journal of Learning Disabilities, 38(4), 286-292.
Brewster, S.J. (2004). Putting words into their mouths? Interviewing people with learning disabilities and little/no speech. British Journal of Learning Disabilities, 32(4), 166-169.
Caldwell, K. (2014). Dyadic interviewing: a technique valuing interdependence in interviews with individuals with intellectual disabilities. Qualitative Research, 14(4), 488-507.
Cameron, L., Murphy, J. (2006). Obtaining consent to participate in research: the issues involved in including people with a range of learning and communication disabilities. British Journal of Learning Disabilities, 35(2), 113-120.
Claes, C., Vandevelde, S., Van Hove, G., van Loon, J., Verschelden, G. (2012). Relationship between self-report and proxy ratings on assessed personal quality of life-related outcomes. Journal of Policy and Practice in Intellectual Disabilities, 9(3), 159-165.
Clare, I.C., Gudjonsson, G.H. (1993). Interrogative suggestibility, confabulation, and acquiescence in people with mild learning disabilities (mental handicap): Implications for reliability during police interrogations. British Journal of Clinical Psychology, 32(3), 295-301.
Coons, K.D., Watson, S.L. (2013). Conducting research with individuals who have intellectual disabilities: ethical and practical implications for qualitative research. Journal on Developmental Disabilities, 19(2), 14-24.
Cummins, R.A., Lau, A.D. (2003). Community integration or community exposure? A review and discussion in relation to people with an intellectual disability. Journal of Applied Research in Intellectual Disabilities, 16(2), 145-157.
Demetriou,C., Uzun Ozer, B., Essau, C.A. (2015) Self-report questionnaires. W: R.L. Cautin, S.O. Lilienfeld (red.), The encyclopedia of clinical psychology (s. 1-6). First Edition. https://www. researchgate.net/profile/Bilge_Oezer/publication/313966621_SelfReport_Questionnaires/links/5a0ab 61da6fdcc2736dec750/Self-Report-Questionnaires.pdf (dostęp: 28.11.2018).
Everington, C., Fulero, S.M. (1999). Competence to confess: measuring understanding and suggestibility of defendants with mental retardation. Mental Retardation, 37(3), 212-220.
Finlay, W.M.L., Lyons, E. (2001). Methodological issues in interviewing and using self-report scales with people with mental retardation. Psychological Assessment, 13(3), 319-335.
Finlay, W.M.L., Lyons, E. (2002). Acquiescence in interviews with people with mental retardation. Mental Retardation, 40(1), 14-29.
Hays, S-J., Murphy, G., Sinclair, N. (2003). Going ethical approval for research into sensitive topics: ‘two strikes and you’re out?’ British Journal of Learning Disabilities, 31, 181-189.
Harris, J. (2003). Time to make up your mind: why choosing is difficult. British Journal of Learning Disabilities, 3(1), 3-8.
Hartley, S.L., MacLean, W.E. (2006). A review of the reliability and validity of Likert-type scales for people with intellectual disability. Journal of Intellectual Disability Research, 50(11), 813-827.
Holland, A.J., Hon, J., Huppert, F.H., Stevens, F. (2005). Incidence and course of dementia in people with Down’s syndrome: findings form a population based study. Journal of Intellectual Disability Research, 44(2), 138-146.
Hollomotz, A. (2018). Successful interviews with people with intellectual disability. Qualitative Research, 18(2), 153-170.
Irvine, A. (2010). Conducting qualitative research with individuals with developmental disabilities: methodological and ethical considerations. Developmental Disabilities Bulletin, 38(1-2), 21-34.
Johnson, K., Minogue, G., Hopklins, R. (2014). Inclusive research: making a difference to policy and legislation. Journal of Applied Research in Intellectual Disabilities, 27(1), 76-84.
Kamstra, A., van der Putten, A.A.J., Vlaskamp, C. (2015). The structure of informal social networks of persons with profound intellectual and multiple disabilities. Journal of Applied Research in Intellectual Disabilities, 28(3), 249-256.
Kishore, M.T., Nizamie, S.H., Nizamie, A. (2005). The behavioural profile of psychiatric disorders in persons with intellectual disability. Journal of Intellectual Disability Research, 49(11), 852-857.
Kittelsaa, A.M. (2003). Żyjąc w Norwegii z umiarkowaną niepełnosprawnością intelektualną W: A. Gustavsson, J. Tøssebro, E. Zakrzewska-Manterys (red.), Niepełnosprawność intelektualna a style życia. Perspektywy podmiotowe, wybory życiowe, systemy usług w Szwecji, Norwegii i w Polsce (s. 57-88). Warszawa: Wydawnictwo Instytutu Filozofii i Socjologii PAN.
Langlois, L., Martin, L. (2008). Relationship between diagnostic criteria, depressive equivalents and diagnosis of depression among older adults with intellectual disability. Journal of Intellectual Disability Research, 52(11), 896-904.
Lesseliers, J., Van Hove, G., Vandevelde, S. (2009). Regranting identity to the outgraced: narratives of persons with learning disabilities: methodological considerations. Disability and Society, 24(4), 411-423.
Lunsky, Y., Bramston, P. (2006). A preliminary study of perceived stress in adults with intellectual disabilities according to self-report and informant ratings. Journal of Intellectual and Developmental Disability, 31(1), 20-27.
Matikka, L.M., Vesala, H.T. (1997). Acquiescence in quality-of-life interviews with adults who have mental retardation. Mental Retardation, 35(2), 75-82.
Murphy, J., Cameron, L., Watson, J., Markova, I. (b.r.). Evaluating the effectiveness of Talking Mats as a communication resource to enable people with an intellectual disability to express their views on Life Planning. Final report form. http://www.talkingmats.com/wp-content/ uploads/2013/09/Effectiveness-of-TM-and-LD-final-report.pdf. (dostęp: 5.01.2019).
Nind, M. (2008). Conducting qualitative research with people with learning, communication and other disabilities: methodological challenges. National Centre for Research Methods. http:// eprints.ncrm.ac.uk/491/1/MethodsReviewPaperNCRM-012.pdf (dostęp: 28.11.2018)
Parchomiuk, M. (2014). „Nic o nas bez nas”. Udział osób z niepełnosprawnością intelektualną w badaniach. Człowiek – Niepełnosprawność – Społeczeństwo, 3(25), 35-54.
Parchomiuk, M. (2016). Seksualność człowieka z niepełnosprawnością intelektualną. Kraków: Impuls.
Perkins, E.A. (2007). Self- and proxy reports across three populations: older adults, persons with Alzheimer’s Disease, and persons with intellectual disabilities. Journal of Policy and Practice in Intellectual Disabilities, 4(1), 1-10.
Perry, J., Felce, D. (2002). Subjective and objective quality of life assessment: responsiveness. Response bias, and resident: proxy concordance. Mental Retardation, 40(6), 445-456.
Rapley, M., Antaki, C. (1996). A conversation analysis of the ‘‘acquiescence’’ of people with learning disabilities. Journal of Community and Applied Social Psychology, 6(3), 207-227.
Rose, J., Willner, P., Shead, J. (2013). Different factors influence self-reports and third-party reports of anger by adults with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities, 26(5), 410-419.
Sigelman, C.K., Winer, J.L., Schoenrock, C.J. (1982). The responsiveness of mentally retarded persons to questions. Education and Training of the Mentally Retarded, 17(2), 120-124.
Stalker, K. (1998). Some ethical and methodological issues in research with people with learning difficulties. Disability and Society, 13(1), 5-19.
Stancliffe, R.J., Wilson, N.J., Bigby, C., Balandin, S., Craig, D. (2014). Responsiveness to self-report questions about loneliness: a comparison of mainstream and intellectual disability-specific instruments. Journal of Intellectual Disability Research, 58(5), 399-405.
Yan, E.G., Munir, K.M. (2004). Regulatory and ethical principles in research involving children and individuals with developmental disabilities. Ethics and Behavior, 14(1), 31-49.