Emotional and social repercussions of stroke on patient-family caregiver dyads: Analysis of diverging attitudes and profiles of the differing dyads

For patients, the social and emotional repercussions of stroke include shame, personality
changes, and upheavals experienced by the couple (i.e. patient and main family caregiver).
These impacts on the couple ‘patient/family caregiver’ are scarcely documented. Focusing
on the perceptions of the patients and the family caregivers living at home, two years after a
stroke occurrence, the aims of the study were to analyse the concordance of attitudes
towards the emotional and social repercussions of stroke and to determine the profiles of
the differing dyads. Two researchers conducted separate face-to-face structured interviews
with stroke survivors and their family caregivers. Eleven items, identified through a content
analysis of interviews and after a qualitative process of generating questionnaire items,
assessed the commonly experienced impact of stroke on the family, the social repercussions
of stroke, and its emotional effects on the stroke survivors. The kappa concordance
coefficient was used to determine the response convergence between patients and family
caregivers. Four items, selected by a panel of experts, were included in logistic regressions
(i.e., demographic characteristics and patients’ impaired functions) to identify the differing
dyadic profiles. Family caregivers’ and patients’ attitudes towards the social repercussions
of stroke were similar. Patients with motor deficiencies tended to underestimate the
upheaval brought to their couple by stroke, whereas caregivers of language-impaired
patients tended to underestimate their feelings of shame and demeaning. Communication
disturbances, but also residual physical disabilities in stroke survivors, may affect the understanding of each other’s attitudes within dyads. In order to avoid dysfunctional relationships between family caregivers and patients, healthcare professionals need to pay special attention to this issue, especially in cases of aphasia and motor deficiencies.