PURPOSE: The purpose of this study was to explore how survivors of stroke define their quality of life (QOL) and to compare the participants’ subjective understanding of QOL with the popular QOL outcome measure for life after stroke, the Stroke Impact Scale Version 3.0^© (SIS v3.0). The research questions explored during this study were to identify how individuals who have experienced a stroke perceive their QOL in the continuing adjustment phase of recovery and to determine whether the SIS v3.0 is an adequate representation of QOL in continuing adjustment to life after stroke.

BACKGROUND: There is a paucity of literature exploring the long-term effects of stroke on QOL and what intervention this population may need. Understanding how individuals perceive their QOL throughout their long-term recovery can yield information that is pertinent for discerning a need for future interdisciplinary intervention so that individuals can engage in familiar or novel meaningful occupations.

DESIGN: Exploratory nonexperimental design

PARTICIPANTS: Participants were selected using a nonprobability, nominated sampling method that yielded 8 participants. Participants from the Salvadia et al. convenience sample were combined with participants from this year’s study. Inclusion criteria were as follows: participants must be age 18 yr or older, have a documented history of stroke, and live independently in the community.

DATA COLLECTION: SIS v3.0 and a qualitative semistructured interview

ANALYSIS: A modified content analysis of the qualitative interviews revealed five themes regarding QOL in the continuing adjustment stage of stroke recovery.

RESULTS: Themes were redefining self, helping others, fatigue, depression, and support from the community. Each participant defined QOL beyond the traditional health-related QOL (HR-QOL) domains (Strength; Memory and thinking; Hand use; Communication; Daily activities; Emotions; Participation in activities; Mobility; Stroke recovery percentage) that are assessed in the SIS v3.0.

Overall, the SIS v3.0 is a valid assessment for gathering data on the factors that contribute to individuals’ QOL; however, without the qualitative interview to allow participants to elaborate on the results, QOL cannot be fully understood based solely on the SIS v3.0 domains alone.

Throughout the recovery process, individuals define their QOL by what they find important in life and activities they find to be meaningful and can still participate in, despite their history of stroke.

DISCUSSION: Overall, the SIS v3.0 is an adequate representation of impairments that affect individuals’ QOL; however, a qualitative interview was necessary to determine individuals’ subjective views beyond traditional HR-QOL measures and to obtain a holistic picture of how survivors of stroke perceive their QOL in the continuing adjustment stage.

After gaining insight as to how those who have experienced stroke perceive their QOL, the question of how stroke affects QOL in the continuing adjustment stage of recovery can be better understood, and additional research can be done to explore how occupational therapy services can be rendered for this population.

IMPACT STATEMENT: It is necessary to research and understand QOL in the continuing adjustment phase of stroke recovery so that individuals who survive a stroke can engage in preexisting or new meaningful occupations to a degree that is personally satisfactory to them, an effort that can be achieved with the assistance of occupational therapy.