Methodological issues in interviewing and using self-report questionnaires with people with mental retardation.

Abstract

In this article the authors review methodological issues that arise when interviews and self-report questionnaires are used with people with mental retardation and offer suggestions for overcoming some of the difficulties described. Examples are drawn from studies that use qualitative methodology, quantitative studies assessing different question types, and studies reporting on the development of instruments measuring psychiatric symptoms, self-concept, and quality of life. Specific problems that arise with respect to item content (e.g., quantitative judgments, generalizations), question phrasing (e.g., modifiers), response format (e.g., acquiescence, multiple-choice questions), and psychometric properties (factor structure and validity) are discussed. It is argued that because many self-report questionnaires include questions that have been found to be problematic in this population, more attention needs to be paid to establishing the validity of such measures and to clearly defining the population for which the instrument is designed. The importance of obtaining information from people with mental retardation 1 is increasingly stressed by researchers, clinicians, and those involved in service development. This is a result of the limitations of informant reports for many psychological phenomena (such as subjective states), as well as a change in the philosophy of services toward user consultation and a greater emphasis on people with mental retardation making decisions about their own lives. Structured or semistructured interviews are used in the formulation stage of many psychological therapies, in the assessment of abilities, IQ, and neuropsychology, as well as in forensic, research, and individual planning contexts. Verbal selfreport questionnaires are used in clinical assessment (e.g., to assess psychopathology, self-esteem, personality), research, and service evaluation. However, difficulties in conducting interviews and using self-report questionnaires with this population are widely reported. Such difficulties have been described in psychiatric and psychological assessments (e.g.

Health‐promoting physical activity of adults with mental retardation

“…These issues are particularly troublesome when attempting to apply self-report techniques to examine physical activity in people with MR. Problems with acquiescence and comprehension in self-report research with this population have been well-documented [Bogdan and Taylor, 1994;Finlay and Lyons, 2001]. Proxy respondents (e.g., caregivers) are typically used as self-report resources to assess physical activity in this group [Messent et al, 1998b[Messent et al, , 1999Robertson et al, 2000Draheim et al, 2002a,, 2002b], but there are some concerns regarding the reliability of this approach because secondary sources may not accurately report primary source behavior [Finlay and Lyons, 2001].…”

“…There was a strong association between physical activity and certain cardiovascular disease risk factors such as abdominal obesity [Draheim et al, 2002a[Draheim et al, , 2003. The authors noted that the seemingly inflated activity estimates may be attributed to overestimation by proxy or secondary sources [Lunsky and Benson, 1999;Finlay and Lyons, 2001]. …”

Serious leisure and people with intellectual disabilities: benefits and opportunities

“…Sigelman et al (1983) reported that interviews are a potentially viable method of data collection among people with a mild to moderate disability, even though some limitations still exist. Finlay and Lyons (2001) reviewed a number of methodological issues with the interviewing process for people with intellectual disability, and offered several suggestions to help overcome some of the difficulties described. Based on their recommendations, a semi-structured interview schedule that included a number of open-ended questions was designed to guide the interviewing process.…”

Sexual health care in persons with intellectual disabilities

“…Proxy reports from caregivers or parents are often used to extract information, but there are concerns regarding the reliability of this approach because secondary sources may not accurately report primary source behavior or feelings [Finlay and Lyons, 2001]. Timmers et al [1981] studied the sexual experiences of 13 men and 12 women with ID living in the community; 65% of the men and 82% of women had experienced sexual intercourse.…”