Despite the increasing application of qualitative interviewing and analysis approaches, individuals with expressive language difficulties are still frequently excluded from such research. In this article, the authors seek to clarify the role for and importance of conducting qualitative interviews with respondents with impaired expressive language. They review current research with reference to studies conducted with individuals with intellectual disabilities or dementia, or those who have experienced stroke or traumatic brain injury, and identify deficits within existing research. They consider the challenges and difficulties that contribute to the limited inclusion of individuals with impaired expressive communication in qualitative interviews and discuss the way forward with suggestions of possible means of overcoming these obstacles. They argue that a willingness to adapt methods appropriately and to modify expectations is an important factor in ensuring that researchers hear the voice of respondents with expressive language deficits.
Abbeduto, I., & Hagerman, R. J. (1997). Language and communication in fragile X syndrome. Mental Retardation and Developmental Disabilities Research Reviews, 3, 313-322.
2.
Aggarwal, N., Vass, A. A., Minardi, H. A., Ward, R., Garfield, C., & Cybyr, B. (2003). People with dementia and their relatives: Personal experiences of Alzheimer’s and of the provision of care. Journal of Psychiatric and Mental Health Nursing, 10, 187-197.
3.
Bamford, C. (1998). Consulting older people with dementia: Cash and care. York, UK: University of York Press.
4.
Banister, P., Burman, E., Parker, I., Taylor, M., & Tindall, C. (1994). Qualitative methods in psychology: A research guide. Buckingham, UK: Open University Press.
5.
Barker, C., Pistrang, N., & Elliott, R. (2002). Research methods in clinical psychology: An introduction for students and practitioners. Chichester, UK: John Wiley Press.
6.
Barnes, C. (1992). Qualitative research: Valuable or irrelevant?Disability, Handicap, and Society, 7, 115-124.
7.
Bays, C. L. (2001). Older adults’ descriptions of hope after a stroke. Rehabilitation Nursing, 26, 18-27.
8.
Beard, R. L. (2004). In their voices: Identity preservation and experiences of Alzheimer’s disease. Journal of Aging Studies, 18, 415-428.
9.
Beattie, A., Daker-White, G., Gilliard, J., & Means, R. (2004). “How can they tell?” A qualitative study of the views of younger people about their dementia and dementia care services. Health and Social Care in the Community, 12, 359-368.
10.
Bedrosian, J. L. (1993). Making minds meet: Assessment of conversational topic in adults with mild to moderate mental retardation. Topics in Language Disorders, 13, 36-46.
11.
Biklen, S., & Moseley, C. (1988). “Are you retarded?” “No I’m Catholic”: Qualitative methods in the study of people with severe handicaps. Journal of the Association of Severe Handicaps, 13, 155-162.
12.
Booth, T., & Booth, W. (1996). Sounds of silence: Narrative research with inarticulate subjects. Disability and Society, 11, 55-69.
13.
Bourgeois, M. (1991). Communication treatment for adults with dementia. Journal of Speech and Hearing Research, 34, 831-844.
14.
Brinton, B., & Fujiki, M. (1993). Communication skills and community integration in adults with mild to moderate mental retardation. Topics in Language Disorders, 13, 9-19.
15.
Brinton, B., & Fujiki, M. (1994). Ability of institutionalised and community-based adults with retardation to respond to questions in an interview context. Journal of Speech and Hearing Research, 37, 369-377.
16.
Burton, A. (1997). Dementia: A case for advocacy? In S. Hunter (Ed.), Dementia: Challenges and new directions (pp. 194-211). London: Jessica Kingsley.
17.
Carnaby, S. (1997). “What do you think?”: A qualitative approach to evaluating individuals planning services. Journal of Intellectual Disability Research, 41, 225-231.
18.
Cheston, R., Bender, M., & Byatt, S. (2000). Involving people who have dementia in the evaluation of services: A review. Journal of Mental Health, 9, 471-479.
19.
Cinamon, R. G., & Gifsh, L. (2004). Conceptions of work among adolescents and young adults with mental retardation. Career Development Quarterly, 52, 212-224.
20.
Clare, L. (2002a). Developing awareness about awareness in early-stage dementia: The role of psychosocial factors. Dementia: The International Journal of Social Research and Practice, 1, 295-312.
21.
Clare, L. (2002b). We’ll fight it as long as we can: Coping with the onset of Alzheimer’s disease. Aging and Mental Health, 6, 139-148.
22.
Clare, L. (2003). Managing threats to self: Awareness in early stages of Alzheimer’s disease. Social Science and Medicine, 57, 1017-1029.
23.
Clarke, P. (2003). Towards a greater understanding of stroke: Integrating quantitative and qualitative methods. Journal of Aging Studies, 17, 171-187.
24.
Cohen, D. (1991). The subjective experience of Alzheimer’s disease: The anatomy of an illness as perceived by patients and families. American Journal of Alzheimer’s Care and Related Disorders and Research, 6, 6-11.
25.
Cohen, D., & Eisdorfer, C. (1986). The loss of self: A family resource for the care of Alzheimer’s disease and related disorders. London: W. W. Norton.
26.
Cohen, L. (1994). Old age: Cultural and critical perspectives. Annual Review of Anthropology, 23, 137-158.
27.
Cohen, L. (1995). Towards an anthropology of senility: Anger, weakness and Alzheimer’s in Banaras, India. Medical Anthropology Quarterly, 9, 314-334.
28.
Conneeley, A. L. (2003). Quality of life and traumatic brain injury: A one-year longitudinal qualitative study. British Journal of Occupational Therapy, 66, 440-446.
29.
Cox, E. O., Dooley, A., Liston, M., & Miller, M. (1998). Coping with stroke: Perceptions of elderly who have experienced stroke and rehabilitation interventions. Topics in Stroke Rehabilitation, 4, 76-88.
30.
Darragh, A. R., Sample, P. L., & Krieger, S. R. (2001). “Tears in my eyes ’cause somebody finally understood”: Client perceptions of practitioners following brain injury. American Journal of Occupational Therapy, 55, 191-199.
31.
Davies, C. A., & Jenkins, R. (1997). “She has different fits to me”: How people with learning disabilities see themselves. Disability and Society, 12, 95-109.
32.
Docherty, S., & Sandelowski, M. (1998). Focus on qualitative methods: Interviewing children. Research in Nursing and Health, 77, 177-185.
33.
Dowswell, G., Dowswell, T., Lawler, J., Green, J., & Young, J. (2002). Patients’ and caregivers’ expectations and experiences of a physiotherapy intervention 1 year following stroke: A qualitative study. Journal of Evaluation in Clinical Practice, 8, 361-365.
34.
Faircloth, C. A., Rittman, M., Boylstein, C., Young, M. E., & Van Puymbroeck, M. (2004). Energizing the ordinary: Biographical work and the future in stroke recovery narratives. Journal of Aging Studies, 18, 399-413.
35.
Finlay, W. M. L., & Lyons, E. (2001). Methodological issues in interviewing and using self-report questionnaires with people with mental retardation. Psychological Assessment, 13, 319-335.
36.
Flynn, M. (1986). Adults who are mentally handicapped as consumers: Issues and guidelines for interviewing. Journal of Mental Deficiency Research, 30, 369-377.
37.
Garro, L., & Mattingly, C. (1994). Narrative representations of illness and healing. Social Science and Medicine, 38, 118-127.
38.
Gilleard, C., Gilleard, E., Gledhill, K., & Whittick, J. (1984). Caring for the elderly mentally infirm at home: A survey of the supporters. Journal of Epidemiology and Community Health, 38, 310-325.
39.
Gillies, B. (2000). A memory like clockwork: Accounts of living through dementia. Aging and Mental Health, 4, 366-374.
40.
Gillman, M., Swain, J., & Heyman, B. (1997). Life history or “case” history: The objectification of people with learning disabilities through the tyranny of professional discourses. Disability and Society, 12, 675-693.
41.
Good, B. J. (1994). Medicine, rationality and experience: An anthropological perspective. Cambridge, UK: Cambridge University Press.
42.
Goodley, D. (1996). Tales of hidden lives: A critical examination of life history research with people who have learning difficulties. Disability and Society, 11, 333-348.
43.
Haeggstroem, T., Axelsson, K., & Norberg, A. (1994). The experience of living with stroke sequelae illuminated by means of stories and metaphors. Qualitative Health Research, 4, 321-337.
44.
Hagner, D., & Davies, T. (2002). “Doing my own thing”: Supported self-employment for individual with cognitive disabilities. Journal of Vocational Rehabilitation, 17, 65-74.
45.
Hagner, D., Helm, D. T., & Butterworth, J. (1996). “This is your meeting”: A qualitative study of person-centered planning. Mental Retardation, 34, 159-171.
46.
Hamil, L. B. (2003). Going to college: The experiences of a young woman with Down syndrome. Mental Retardation, 41, 340-353.
47.
Harker-Longton, W., & Fish, R. (2002). “Cutting doesn’t make you die”: One woman’s views on the treatment of her self-injurious behaviour. Journal of Learning Disabilities, 6, 137-151.
48.
Harris, P. B., & Sterin, G. J. (1999). Insider’s perspective: Defining and preserving the self in dementia. Journal of Mental Health and Aging, 5, 241-256.
49.
Heal, L. W., & Sigelman, C. K. (1995). Response bias in interviews of individuals with limited mental ability. Journal of Intellectual Disability Research, 39, 331-340.
50.
Higgins, E. L., Raskind, M. H., Goldberg, R. J., & Herman, K. L. (2002). Stages of acceptance of a learning disability: The impact of labelling. Learning Disability Quarterly, 25, 3-18.
51.
Holst, G., & Hallberg, I. R. (2003). Exploring the meaning of everyday life for those suffering from dementia. American Journal of Alzheimer’s Disease and Other Dementias, 18, 359-365.
52.
Howorth, P., & Saper, J. (2003). The dimensions of insight in people with dementia. Aging and Mental Health, 7, 113-122.
53.
Hubbard, G., Downs, M. G., & Tester, S. (2003). Including older people with dementia in research: Challenges and strategies. Aging and Mental Health, 7, 351-362.
54.
Kane, M. N. (1998). Consent and competency in elders with Alzheimer’s disease. American Journal of Alzheimer’s Disease, 13(4), 179-188.
55.
Katsuno, T. (2003). Personal spirituality of persons with early-stage dementia. Dementia: The International Journal of Social Research and Practice, 2, 315-335.
56.
Keady, J. (1996). The experience of dementia: A review of the literature and implications for nursing practise. Journal of Clinical Nursing, 5, 275-288.
57.
Keady, J., Nolan, M., & Gilliard, J. (1995). Listen to the voices of experience. Journal of Dementia Care, 13, 15-17.
58.
King, C. (1997). Cultural dimensions of dementia and care-giving. In B. M. L. Miesen & G. M. M. Jones (Eds.), Care-giving in dementia: Research and applications (Vol. 2, pp. 269-286). London: Routledge.
59.
Kitwood, T. (1990). The dialectics of dementia: With particular reference to Alzheimer’s disease. Ageing and Society, 10, 177-196.
60.
Kitwood, T. (1993). Towards the reconstruction of an organic mental disorder. In A. Radley (Ed.), Worlds of illness: Biographical and cultural perspectives on health and disease (pp. 143-160). London: Routledge.
61.
Kitwood, T., & Bredin, K. (1992a). Person to person: A guide to the care of those with failing mental powers. Loughton, UK: Gale Centre.
62.
Kitwood, T., & Bredin, K. (1992b). Towards a theory of dementia care: Personhood and well-being. Ageing and Society, 12, 269-287.
63.
Kleinman, A. (1988). The illness narratives: Suffering, healing and the human condition. New York: Basic Books.
64.
Koch, T., Marks, J., & Tooke, E. (2001). Evaluating community nursing service: Listening to the voices of clients with an intellectual disability and/or their proxies. Journal of Clinical Nursing, 10, 352-363.
65.
Kroese, B. S., Hussein, H., Clifford, C., & Ahmed, N. (2002). Social support networks and psychological well-being of mothers with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities, 15, 324-340.
66.
Kvigne, K., & Kirkevold, M. (2003). Living with bodily strangeness: Women’s experiences of their changing and unpredictable body following a stroke. Qualitative Health Research, 13, 1291-1310.
67.
Levin, E., Sinclair, I., & Gorbach, P. (1989). Families, services and confusion in old age. Avebury, UK: Aldershot.
68.
Li, E. P. (2004). Self perceived equal opportunities for people with intellectual disability. International Journal of Geriatric Research, 27, 241-245.
69.
Lilley, S., Lincoln, N. B., & Francis, V. M. (2003). A qualitative study of stroke patient’s and carer’s perceptions of the stroke family support organizer service. Clinical Rehabilitation, 17, 540-547.
70.
Lofgren, M. L. (2004). “May I?”: About sexuality and love in the new generation with intellectual disabilities. Sexuality and Disability, 22, 197-207.
71.
Macdonald, J., Sinason, V., & Hollins, S. (2003). An interview study of people with learning disabilities’ experience of and satisfaction with group analytic therapy. Psychology and Psychotherapy: Theory, Research and Practice, 76, 433-453.
72.
MacLean, N., Pound, P., Wolfe, C., & Rudd, A. (2000). Qualitative analysis of stroke patient’s motivation for rehabilitation. British Medical Journal, 321, 1051-1054.
73.
Mactavish, J. B., Mahon, M. J., & Lutfiyya, Z. M. (2000). “I can speak for myself”: Involving individuals with intellectual disabilities as research participants. Mental Retardation, 38, 216-227.
74.
McLean, L. K., Brady, N. C., & McLean, J. F. (1996). Reported communication difficulties of individuals with severe mental retardation. American Journal of Mental Retardation, 100, 580-591.
75.
McVilly, K. R. (1996). Interviewing people with learning disability about their residential service. British Journal of Learning Disabilities, 23, 138-142.
76.
Meadan, H., & Halle, J. W. (2004). Social perceptions of students with learning disabilities who differ in social status. Learning Disabilities Research and Practice, 19, 71-82.
77.
Menne, H. L., Kinney, J. N., & Morhardt, D. J. (2002). “Trying to continue to do as much as they can do”: Theoretical insights regarding continuity and meaning making in the face of dementia. Dementia: The International Journal of Social Research and Practice, 1, 367-382.
78.
Miceli, G., Capasso, R., Daniele, A., Esposito, T., Magarelli, M., & Tomaiulo, F. (2000). Selective deficit for people’s names following left temporal damage: An impairment of domain-specific conceptual knowledge. Cognitive Neuropsychology, 17, 489-516.
79.
Mishna, F. (1996). In their own words: therapeutic factors for adolescents who have learning disabilities. International Journal of Group Psychotherapy, 46, 265-273.
80.
Morningstar, M. E., Turnbull, A. P., & Turnbull, H. R. (1996). What do students with disabilities tell us about the importance of family involvement in the transition from school to adult life?Exceptional Children, 62, 249-260.
81.
Morris, J. (1992). Personal and political: A feminist perspective on researching physical disability. Disability, Handicap and Society, 7, 157-166.
82.
Mozley, C. G., Huxley, P., Sutcliffe, C., Bagley, H., Burns, A., Challis, D., et al. (1999). “Not knowing where I am doesn’t mean I don’t know what I like”: Cognitive impairment and quality of life responses in elderly people. International Journal of Geriatric Psychiatry, 14, 776-783.
83.
Murray, C. D., & Harrison, B. (2004). The meaning and experience of being a stroke survivor: An interpretative phenomenological analysis. Disability and Rehabilitation, 26, 808-816.
84.
Myers, F., Ager, A., Kerr, P., & Myles, S. (1998). Outside looking in?: Studies of the community integration of people with learning disabilities. Disability and Society, 13, 389-413.
85.
Nochi, M. (1998a). “Loss of self” in the narratives of people with traumatic brain injuries: A qualitative analysis. Social Science & Medicine, 46, 869-878.
86.
Nochi, M. (1998b). Struggling with the labelled self: People with traumatic brain injuries in social settings. Qualitative Health Research, 8, 665-681.
87.
Nochi, M. (2000). Reconstructing self-narratives in coping with traumatic brain injury. Social Science & Medicine, 51, 1795-1804.
88.
Nygard, L., & Borell, L. (1998). A life-world of altering meaning: Expressions of illness experience of dementia in everyday life over 3 years. Occupational Therapy Journal of Research, 18, 109-136.
89.
O’Flaherty, C. A., & Douglas, J. M. (1997). Living with cognitive-communicative difficulties following traumatic brain injury: Using a model of interpersonal communication to characterize the subjective experience. Aphasiology, 11, 889-911.
90.
Oliver, M. (1992). Changing the social relations of research production. Disability, Handicap and Society, 7, 101-114.
91.
Paterson, B., & Scott-Findlay, S. (2002). Critical issues in interviewing people with traumatic brain injury. Qualitative Health Research, 12, 399-409.
92.
Patton, M. Q. (2002). Qualitative research and evaluation methods (3rd ed.). Thousand Oaks, CA: Sage.
93.
Pearce, A., Clare, L., & Pistrang, N. (2002). Managing sense of self: Coping in the early stages of Alzheimer’s disease. Dementia, 1, 173-192.
94.
Perry, J., & Felce, D. (2002). Subjective and objective quality of life assessment: Responsiveness, response bias and resident proxy concordance. Mental Retardation, 40, 445-456.
95.
Phinney, A. (2002). Fluctuating awareness and the breakdown of the illness narrative in dementia. Dementia: The International Journal of Social Research and Practice, 1, 329-344.
96.
Phinney, A., & Chesla, C. A. (2003). The lived body in dementia. Journal of Aging Studies, 17, 283-299.
97.
Pilgrim, D., & Waldron, L. (1998). User involvement in mental health service development. Journal of Mental Health, 7, 95-104.
98.
Poston, D., Turnbull, A., Park, J., Mannan, H., Marquis, J., & Wang, M. (2003). Family quality of life: A qualitative inquiry. Mental Retardation, 41, 313-328.
99.
Pottie, C., & Sumarah, J. (2004). Friendships between persons with and without developmental disabilities. Mental Retardation, 42, 55-66.
100.
Pound, P., Bury, M., Gompertz, P., & Ebrahim, S. (1994). Views of survivors of stroke on benefits of physiotherapy. Quality in Health Care, 3, 69-74.
101.
Pound, P., Bury, M., Gompertz, P., & Ebrahim, S. (1995). Stroke patients’ views on their admission to hospital. British Medical Journal, 311, 18-22.
102.
Proctor, G. (2001). Listening to older women with dementia: Relationships, voices and power. Disability and Society, 16, 361-376.
103.
Prout, H. T., & Strohmer, D. C. (1994). Assessment in counselling and psychotherapy. In D. C. Strohmer & H. T. Prout (Eds.), Counselling and psychotherapy with persons with mental retardation and borderline intelligence (pp. 79-118). Brandon, VT: Clinical Psychology Press.
104.
Quayhagen, M. P., & Quayhagen, M. (1996). Discovering life quality in coping with dementia. Western Journal of Nursing Research, 18, 120-135.
105.
Rapley, M., & Antaki, C. (1996). A conversation analysis of the “acquiescence” of people with learning disabilities. Journal of Community and Applied Social Psychology, 6, 207-227.
106.
Reid, D., Ryan, T., & Enderby, P. (2001). What does it mean to listen to people with dementia?Disability and Society, 16, 377-392.
107.
Rey, G. J., Feldman, E., Hernandez, D., Levin, B. E., Rivas-Vasquez, R., Nedd, K. G., et al. (2001). Application of the Multilingual Aphasia Examination-Spanish in the evaluation of Hispanic patients post closed-head trauma. Clinical Neuropsychologist, 15, 13-18.
108.
Robinson, P., Ekman, S. L., & Wahlund, L. O. (1998). Unsettled, uncertain and striving to understand: Toward an understanding of the situation of persons with suspected dementia. International Journal of Aging and Human Development, 47, 143-161.
109.
Rogers, N. B., Hawkins, B. A., & Eklund, S. J. (1998). The nature of leisure in the lives of older adults with intellectual disability. Journal of Intellectual Disability Research, 42, 122-130.
110.
Rogler, L. H. (1999). Methodological sources of cultural insensitivity in mental health research. American Psychologist, 54, 424-433.
111.
Ross, K. B., & Wertz, R. T. (2001). Types and severity of aphasia during the first seven months post stroke. Journal of Medical Speech Language Pathology, 9, 31-53.
112.
Ruef, M. B., & Turnbull, A. P (2002). The perspectives of individuals with cognitive disabilities and/or autism on their lives and their problem behavior. Research Practice for Persons with Severe Disabilities, 27, 125-140.
113.
Sabat, S. R., & Harré, R. (1992). The construction and deconstruction of self in Alzheimer’s disease. Ageing and Society, 12, 443-461.
114.
Scior, K. (2003). Using discourse analysis to study the experiences of women with learning disabilities. Disability and Society, 18, 779-795.
115.
Shakespeare, T. (1996). Rules of engagement: Doing disability research. Disability and Society, 11, 115-120.
116.
Sigelman, C. K., Budd, E. C., Spanhel, C. L., & Schoenrock, C. J. (1981a). Asking questions of mentally retarded persons: A comparison of yes-no and either-or formats. Applied Research in Mental Retardation, 2, 347-357.
117.
Sigelman, C. K., Budd, E. C., Spanhel, C. L., & Schoenrock, C. J. (1981b). When in doubt, say yes: Acquiescence in interviews with mentally retarded persons. Mental Retardation, 19, 53-58.
118.
Sigelman, C. K., Schoenrock, C. J., Spanhel, C. L., Hromas, S. G., Winer, J. L., Budd, E. C., et al. (1980). Surveying mentally retarded persons: Responsiveness and response validity in three samples. American Journal of Mental Deficiency, 84, 479-486.
119.
Simons, K., Booth, T., & Booth, W. (1989). Speaking out: User studies and people with intellectual disabilities. Research, Policy and Planning, 7, 1-17.
120.
Sinason, V. (1992). Mental handicap and the human condition: New approaches from the Tavistock. London: Free Association.
121.
Smith, J. A. (2003). Qualitative psychology: A practical guide to research methods. London: Sage.
122.
Smith, J. A., & Osborn, M. (2003). Interpretative phenomenological analysis. In J. A. Smith (Ed.), Qualitative psychology: A practical guide to research methods (pp. 51-80) London: Sage.
123.
Stalker, K., Gilliard, J., & Downs, M. G. (1999). Eliciting user perspectives on what works. International Journal of Geriatric Psychiatry, 14, 120-134.
124.
Svanstrom, R., & Dahlberg, K. (2004). Living with dementia yields a heteronomous and lost existence. Western Journal of Nursing Research, 26, 671-687.
125.
Swain, J., Heyman, B., & Gillman, M. (1998). Public research, private concerns: Ethical issues in the use of open-ended interviews with people who have learning disabilities. Disability and Society, 13, 21-36.
126.
Szivos-Bach, S. E. (1993). Social comparisons, stigma and mainstreaming: The self esteem of young adults with a mental handicap. Mental Handicap Research, 6, 217-236.
127.
Taylor, S. J., & Bogdan, R. (1998). Introduction to qualitative research methods: A guideline and resource. New York: John Wiley.
128.
Thompson, D. (2002). “Well we’ve all got to get old haven’t we?”: Reflections of older people with intellectual disabilities on aging and change. Journal of Gerontological Social Work, 37, 7-23.
129.
Thorne, S. E., & Paterson, B. L. (2000). Two decades of insider research: What we know and don’t know about chronic illness experience. Annual Review of Nursing Research, 18, 3-12.
130.
Usher, K. J., & Arthur, D. (1998). Process consent: A model for enhancing informed consent in mental health nursing. Journal of Advanced Nursing, 27, 692-697.
131.
Whitehouse, P., Orgogozo, J., Becker, R., Gauthier, S., Pontecorvo, M., Erzigkeit, H., et al. (1997). Quality of life assessment in dementia drug development. Alzheimer Disease and Related Disorders, 11, 56-60.
132.
Willig, C. (2001). Introducing qualitative research in psychology: Adventures in theory and method. Buckingham, UK: Open University Press.
133.
Worth, A., & Tierney, A. J. (1993). Conducting telephone research interviews with elderly people by telephone. Journal of Advanced Nursing, 18, 1977-1984.
134.
Yardley, L. (2000). Dilemmas in qualitative health research. Psychology and Health, 15, 215-228.
135.
Zigman, W., Schupf, N., Haveman, M., & Silverman, W. (1997). The epidemiology of Alzheimer’s disease in mental retardation: Results and recommendations from an international conference. Journal of Intellectual Disabilities, 41, 76-80.
