This article examines qualitative research dilemmas encountered with participants who have communication, physical and cognitive impairments. A review of the extant literature indicates the importance of identifying and resolving these research conundrums. The author will describe a qualitative study on identity formation in individuals with developmental disabilities (IWDD) as a medium to identify and explore the various dilemmas encountered while utilizing in depth interviews. Issues which arose during the research process include concerns about the potential of participants to be vulnerable to coercion, upholding privacy/confidentiality, role confusion and expressive language barriers in participating in narrative discourse; access to participants was an additional concern. Findings from this study indicated that IWDD benefit from participation in qualitative research. Three overarching themes were manifested: being heard, helping others, and enjoying the process. Suggestions for addressing the various dilemmas which might inhibit IWDD from participating in qualitative research are discussed and implications for social work practice and social justice initiatives are delineated.
AmanM. G.HandenB. (2006). Reactions to “Ethical challenges and complexities of including people with intellectual disability as participants in research” by Dr Teresa Iancono. Journal of Intellectual & Developmental Disability, 31, 180–182. doi:10.1080/13668250600876400
2.
BalandinS.GoldbartJ. (2011). Qualitative research and AAC: Strong methods and new topics. Augmentative and Alternative Communication, 27, 227–228. doi:10.3109/07434618.2011.630409
3.
BiklenS. K.MoseleyC. R. (1988). “Are you retarded?” “No, I’m Catholic”: Qualitative methods in the study of people with severe handicaps. The Journal of the Association for the Severely Handicapped, 13, 155–162.
4.
BlaskaJ. (1991). The power of language: Speak and write using “person first”. In NaglerM. (Ed.), Perspectives on disability (2nd ed., pp. 25–32). Palo Alta, CA: Health Markets Research.
5.
BronkenB. A.KirkevoldM. (2013). Between the lines: Generating good qualitative data in studies involving persons with Aphasia. Advances in Nursing Science, 36, E14–E28. doi:10.1097/ANS.0b013e318290200a
6.
BurkhardtT. (2004). Capabilities and disability: The capabilities framework and the social model of disability. Disability & Society, 19, 735–751. doi:10.1080/0968759042000284213
7.
ChwaliszK.ShahS. R.HandK. M. (2008). Facilitating rigorous qualitative research in rehabilitation psychology. Rehabilitation Psychology, 53, 387–399. doi:10.1037/a0012998
8.
CorbinJ.StraussA. (2008). Basics of qualitative research (3 ed.). Los Angeles, CA: Sage.
9.
CousinsW.MilnerS. (2007). Small voices: Children’s rights and representations in social work research. Social Work Education, 26, 447–457. doi:10.1080/02615470601118589
10.
DaltonA. J.McVillyK. R. (2004). Ethics guidelines for international, multicenter research involving people with intellectual disabilities. Journal of Policy in Intellectual Disabilities, 1, 57–70.
11.
DeauxK. (1993). Reconstructing social identity. Personality and Social Psychology Bulletin, 19, 4–12.
12.
DyeL.HareD. J.HendyS. (2007). Capacity of people with intellectual disabilities to consent to take part in a research study. Journal of Applied Research in Intellectual Disabilities, 20, 168–174. doi:10.1111/j.1468-3148.2006.00310.x
13.
FinlayW. M. L.LyonsE. (2001). Methodological issues in interviewing and using self-report questionnaires with people with mental retardation. Psychological Assessment, 13, 319–335. doi:10.1037///1040-3590.13.3.319
14.
HigginsE. L.RaskindM. H.GoldbergR. J.HermanK. L. (2002). Stages of acceptance of a learning disability: The impact of labeling. Learning Disability Quarterly, 25, 3–18.
15.
HolburnS.CeaC. D.CoullL.GoodeD. (2007). Personal vs. proxy focus groups’ perspectives on quality of life. Journal of Policy and Practice in Intellectual Disabilities, 4, 210–212.
16.
JonesI.MarshallJ.LawthomR.ReadJ. (2013). Involving people with communication disability in research in Uganda: A response to the World Report on Disability. International Journal of Speech-Language Pathology, 15, 75–78. doi:10.3109/17549507.2012.743175
17.
KellettM.NindM. (2001). Ethics in quasi-experimental research on people with severe learning disabilities: Dilemmas and compromises. British Journal of Learning Disablities, 29, 51–55.
18.
KellyB. (2007). Methodological issues for qualitative research with learning disabled children. International Journal of Social Research Methodology, 10, 21–35. doi:10.1080/13645570600655159
19.
LloydV.KalsyS.GathererA. (2007). The subjective experience of individuals with Down syndrome living with dementia. Dementia, 6, 63–88. doi:10.1177/1049732306293846
20.
MactavishJ. B.MahonM. J.LutfiyyaZ. M. (2000). “I can speak for myself”: Involving individuals with intellectual disabilities as research participants. Mental Retardation, 38, 216–228.
21.
MarshallZ.NixonS.NepveuxD.WilsonC.FlickerS.McClellandA.ProudfootD. (2012). Navigating risks and professional roles, research with lesbian, gay, bisexual, trans, and queer young people with intellectual disabilities. Journal of Empirical Research on Human Research Ethics, 3, 20–35. doi:10.1525/jer.2012.7.4.20
22.
McCoydJ. L. M.ShdaimahC. S. (2007). Revisiting the benefits debate: Does qualitative social work research produce salubrious effects?Social Work, 52, 340–349. doi.10.1093/sw/52.4.340
23.
McDonaldK. E.KidneyC. A.PatkaM. (2013). “You need to let your voice be heard”: Research participants’ views on research. Journal of Intellectual Disability Research, 57, 216–225. doi:10.1111/j.1365-2788.2011.01527.x
24.
McDonaldK. E.RaymakerD. M. (2013). Paradigm shifts in disability and health: Toward more ethical public health research. American Journal of Public Health, 103, 2165–2173. doi:10.2105/AJPH.2013.301286
25.
MinklerM.FademP.PerryM.BlumK.MooreL.RogersJ. (2002). Ethical dilemmas in participatory action research: A case study from the disability community. Health Education & Behavior, 29, 14–29. doi:10.1177/109019810202900104
26.
MitchellW. (2010). “I know how I feel” listening to young people with life-limiting conditions who have learning and communication impairment. Qualitative Social Work, 9, 185–203. doi:10.1177/1473325009346460
27.
MountB. (1992). Person-centered planning: A sourcebook of values, ideas, and methods to encourage person-centered development (1992 ed.). New York, NY: Graphic Futures.
28.
NindM. (2008). Conducting qualitative research with people with learning, communication and other disabilities: Methodological challenges. ESRC National Centre for Research Methods Review Paper, pp. 1–24.
29.
OliverM. (1996). Understanding disability: From theory to practice. London, UK: Palgrave Publishers Ltd.
30.
OsbornJ. (2006). An overview of social role valorization theory. The SRV Journal, 1, 4–13.
31.
PerryJ.FelceD. (2002). Subjective and objective quality of life assessment: Responsiveness, response bias, and resident: Proxy concordance. Mental Retardation, 40, 445–456.
32.
RaceD.BoxallK.CarsonI. (2005). Towards a dialogue for practice: Reconciling social role valorization and the social model of disability. Disability & Society, 20, 507–521. doi:10.1080/09687590500156196
33.
SciorK. (2003). Using discourse analysis to study the experiences of women with learning disabilities. Disability & Society, 18, 779–795. doi:10.1080/0968759032000119514
34.
ShakespeareT. (2006). The social model of disability. In DavisL. J. (Ed.), The disability studies reader (2nd ed., pp. 197–204). New York, NY: Routledge.
35.
ShawI. (2008). Ethics and the practice of qualitative research. Qualitative Social Work, 7, 400–414. doi:10.1177/1473325008097137
36.
SullivanF.BowdenK.McKenzieK.QuayleE. (2013). ‘Touching people in relationships’: A qualitative study of close relationships for people with an intellectual disability. Journal of Clinical Nursing, 22, 3456–3466. doi:10.1111/jocn.12375
37.
SwainJ.HeymanB.GillmanM. (1998). Public research, private concerns: Ethical issues in the use of open-ended interviews with people who have learning disabilities. Disability & Society, 13, 21–36.
38.
TaylorR .R. (2005). Can the social model explain all of disability experience? Perspectives of persons with chronic fatigue syndrome. The American Journal of Occupational Therapy, 59, 497–506. doi:10.5014/jot.59.5.497
39.
ThoitsP. A. (2011). Resisting the stigma of mental illness. Social Psychology Quarterly, 74, 6–28. doi:10.1177/0190272511398019
40.
WelsbyJ.HorsfallD. (2011). Every day practices of exclusion/inclusion: Women who have an intellectual disability speaking for themselves?Disability & Society, 26, 795–807. doi:10.1080/09687599.2011.618731
41.
WolfensbergerW. (1983). Social role valorization: A proposed new term for the principle of normalization. Mental Retardation, 21, 234–239.
42.
World Health Organization and The World Bank. (2011). World report on disability. Geneva, Switzerland: World Health Organization. Retrieved fromwww.who.int
