Date Published: April 23, 2019
Publisher: Public Library of Science
Author(s): Barbara Bucki, Elisabeth Spitz, Michèle Baumann, Michael McCarthy.
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.
Stroke is one of the main causes of acquired disability in most developed countries and considerably affects the life course of the victims . Depending on the affected brain area, stroke can leave long-term impairments of motor, sensory, and/or cognitive functions, but is also associated with social changes . At the occupational level, an average of two out of five stroke victims working at the time of occurrence were able to return to work; at the personal level, stroke can affect the relationships with children and the partners—including the sexual sphere—as well as deteriorate family dynamics and decrease participation in social activities [3, 4].
This study is part of a larger national survey on living at home two years after stroke in Luxembourg, conducted among all adult (≥18 years) survivors of stroke and their main family caregivers. Over a period of 18 months, the records of all the patients hospitalised two years earlier in Luxembourg (N = 797) were analysed (e.g., Fig 1).
Among the 57 patient-caregiver dyads, one patient did not respond to any of the items; thus, the sample size decreased to 56 dyads. Of these, 50 dyads were composed of couples (89.3%), and 32 (64%) had wife caregivers and 18 (36%) husband caregivers. In the six remaining dyads, five caregivers were women (83.3%), mainly daughters caring for a parent, and one was another family member—not specified. A majority of households had completed at least 12 years of education.
Our study analysed the concordance of attitudes between patients and their caregivers towards the emotional and social repercussions of stroke and determined the differing dyadic profiles. The attitudes of both family caregivers and stroke survivors towards the social repercussions of stroke were similar. Stroke patients with motor deficiencies tended to underestimate the upheaval brought to their couple relationship due to the event, whereas caregivers of language-impaired relatives tended to underestimate their feelings of shame and feeling demeaned. Caregivers generally tended to overestimate the upheaval on the couple and the patients’ personality change. Thus, communication disturbances, but also residual physical disabilities, may affect the understanding of each other’s attitudes within dyads.
In the chronic phase following stroke, family caregivers’ and survivors’ attitudes towards social repercussions of stroke are similar. The upheaval felt on the level of the couple was even higher for caregivers than for the survivors. Together, they have to cope with the social isolation potentially incurred by the stroke. Negative affects experienced by the survivors, such as shame and feeling demeaned, are not necessarily perceived by their caregivers, which may be associated with inadequate responses to the survivors’ needs. The dissimilarities in attitudes raise the question as to the quality of the relationship between two relatives where one takes care of the other. Further research may help in finding means to enhance the communication between the members of the dyads, which would help reinforce their respective health capability .