Incongruence Between Stroke Survivor and Spouse Perceptions of Survivor Functioning and Effects On Spouse Emotional Health: A Mixed-Methods Study

Background and purpose. Stroke is the leading cause of serious, long-term disability in the U.S. and affects four out of five American families. After initial treatment, approximately 80% of survivors return to the community where they rely on informal caregivers, primarily spouses, for support in contending with the multiple challenges associated with stroke recovery. The impact of caregiving on the emotional health of spouses is profound. For example, spousal caregivers experience up to three times the rate of depression found in the general population. Although we currently have some understanding about risk factors for poor emotional outcomes among spousal caregivers, there is limited understanding about how dynamics of the survivor-spouse relationship, particularly with respect to differing perceptions about survivor functioning following stroke, can impact spouses. The purpose of this mixed methods study is to examine survivors’ and spouses’ unique perspectives on survivor cognitive and functional capacity and the extent to which incongruence in partners’ ratings of survivor functioning affects spouses’ emotional health. 

Methods. In-depth interviews were conducted with 36 stroke survivor-spouse dyads (N = 72). Survivors and spouses were interviewed separately. Each partner also completed a series of standardized quantitative measures assessing survivor memory and thinking, survivor ability to perform common activities of daily living (ADLs), and survivor and spouse depressive symptoms. Constant comparative analysis was used to distill themes from interview transcripts. Discrepancy scores were calculated (i.e., the difference between partners’ individual ratings of survivor functioning) and used in multiple regression models predicting spouse depressive symptoms.

Results. Spouses described being concerned and worried about survivors having unrealistic and potentially dangerous views about their own abilities post-stroke. Spouses consistently rated survivor memory and thinking and ADL functioning as worse than survivors rated themselves. After controlling for spouse gender, age, and individual rating of survivor ADL functioning, discrepancy scores for ADL functioning were found to significantly predict spouse depressive symptoms (β = .472, p = .007).

Conclusions and implications. These qualitative and quantitative findings are complementary and provide a nuanced picture of how incongruence in partners’ perceptions about survivor functioning can tangibly impact spouse emotional health. Social work practitioners should be aware of the complex dynamics involved in recovering from stroke in the context of a spousal relationship and work to reconcile partners’ perceptions about survivor functioning.