Clinicians such as clinical geneticists and genetic counselors know that the best way to learn about the impact of a genetic disorder or a genetic test result on a patient and their family is to ask ''how has this been for you?'', and then listen carefully for the answer. We may find that although our patients appear to be doing well, on deeper probing, we learn that they have needed to engage in a great deal of emotional or spiritual work in order to be whole and psychologically fit. In a similar way, researchers can use qualitative methods to learn about the impact of a genetic disorder on groups of people by listening to their collective stories, analyzing their responses, and summarizing their experiences, even when those voices are from children as reported in an article in this issue [see below, Meulenkamp et al., 2008].
Qualitative research has been defined as ''an inquiry process of understanding based on distinct methodological traditions of inquiry that explore a social or human problem. The researcher builds a complex, holistic picture, analyzes words, reports detailed views of informants, and conducts the study in a natural setting'' [Cresswell 1998, page 15]. Qualitative methods derive from multiple disciplines (anthropology, sociology, history, psychology, nursing, etc.) and are represented by many research traditions including ethnography, discourse analysis, phenomenology, case study, and grounded theory. Qualitative research can be used to help researchers generate theories and conceptual frameworks, articulate testable hypotheses, put concepts into operation, and interpret results. Because quantitative research can only address issues that have been identified already, qualitative research is an important adjunct to the development and improvement of quantitative measurement instruments by capturing the broadest view possible of the phenomenon of interest [Beeson 1997;Mills et al., 2005].