Introduction: Stroke survivors (SS) and their family caregivers (CG) often disagree about how well the survivor is regaining function. This disagreement (or “incongruence”) may contribute to poor outcomes. This study explored the extent to which incongruence: (1) Differs by survivor function domain (memory/thinking, communication, IADLs, mobility, social participation); (2) Increases or decreases over time without intervention, and; (3) Is associated with emotional distress, subjective stress, and depressive symptoms in both SS and CG.
Methods: Structured survey interviews based on valid measures were conducted with 31 SS and CG separately, at 3 and 6 months post-stroke (enrollment and follow-up). Paired sample t-tests were used to examine incongruence in each domain, at enrollment and follow-up, as well as changes in incongruence over time. Bivariate correlations were used to examine the association between incongruence at enrollment and SS and CG outcomes at follow-up. A less stringent alpha (p=.10) was used due to the exploratory nature of the study.
Results: SS generally perceived their function as better than CG perceived it at each time point, with significant differences in the memory/thinking (p<.05) and communication (p<.05) domains. Incongruence did not change naturally over time, except for social participation incongruence which showed a marginal increase (p<.10). For SS: IADL incongruence at enrollment was associated with follow-up emotional distress (p<.05) and depressive symptoms (p<.10). For CG: IADL incongruence at enrollment was associated with follow-up emotional distress (p<.10), stress (p<.01), and depressive symptoms (p<.01); communication incongruence was associated with emotional distress (p<.10) and stress (p<.10); and mobility incongruence was associated with depressive symptoms (p<.10).
Conclusions: This study supports previous research showing that SS and CG often have incongruent perceptions about survivor function. Additionally, it demonstrates that incongruence generally does not improve by itself and that it may be detrimental for both SS and CG outcomes. Further research with larger samples should be directed at the mitigation of incongruence and strategies to improve outcomes for both SS and CG.