Embedding the perceptions of people with dementia into quantitative research design.

ABSTRACT

PURPOSE: Patient perspectives about quality of life are often found in the results of qualitative research and could be applied to steer the direction of future research. The purpose of this paper was to describe how findings from a body of qualitative research on patient perspectives about quality of life were linked to a clinical administrative dataset and then used to design a subsequent quantitative study. METHODS: Themes from two systematic reviews of qualitative evidence (i.e., metasyntheses) identified what affects quality of life according to people with dementia. Selected themes and their sub-concepts were then mapped to an administrative dataset (the Resident Assessment Instrument 2.0) to determine the study focus, formulate nine hypotheses, and select a patient-reported outcome. A literature review followed to confirm existence of a knowledge gap, identify adjustment variables, and support design decisions. RESULTS: A quantitative study to test the association between conflict and sadness for people with dementia in long-term care was derived from metasynthesis themes. Challenges included (1) mapping broad themes to the administrative dataset; (2) decisions associated with inclusion of variables not identified by people with dementia from the qualitative research; and (3) selecting a patient-reported outcome, when the dataset lacked a valid subjective quality-of-life measure. CONCLUSIONS: Themes derived from a body of qualitative research capturing a target populations' perspective can be linked to administrative data and used to design a quantitative study. Using this approach, the quantitative findings will be meaningful with respect to the quality of life of the target population.