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

Abstract

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.

Interpersonal relationship challenges among stroke survivors and family caregivers

“…That is, spousal dyads tended to experience less or at least different forms of physical contact and intimacy after stroke (i.e., sexually) whereas adult child-parent dyads tended to experience more (i.e., assistance with bathing, toileting, and other personal care). Some studies in stroke include only spousal dyads (Anderson et al, 2017;Gillespie & Campbell, 2011;McCarthy et al, 2018;McCarthy & Bauer, 2015;McCarthy & Lyons, 2014), others include only adult child-parent dyads (Bastawrous et al, 2015;Hallé et al, 2011;Le Dorze et al, 2009), and others include both dyad types (Bergström et al, 2011;Bucki et al, 2019;Cramm et al, 2012;Twiddy et al, 2012). Similar to what we tell the dyads with whom we work, all cases of stroke and the relationships that follow are different.…”

“…However, no differences were found between spousal versus adult child-parent caregivers in perceptions of care recipient impairments, perceived quality of the relationship with the care recipient, or overall caregiving burden (Pinquart & Sorensen, 2011). Numerous studies about the psychosocial aspects of stroke have included both spousal and non-spousal caregivers (e.g., Bergström, Eriksson, von Koch, & Tham, 2011;Bucki, Spitz, & Baumann, 2019;Cramm, Strating, & Nieboer, 2012;Twiddy, House, & Jones, 2012). However, few have focused explicitly on relationship challenges.…”

mHealth applications to support caregiver needs and engagement during stroke recovery: A content review

“…It tends to abruptly affect individuals and caregivers in their daily life (Tsai et al, 2015). The impact of stroke on the patient and their caregiver can be physical, psychological, and social (Bucki et al, 2019). This impact can be mitigated by adhering to a set of clinical guidelines that might improve the quality-of-life of the patient and reduce the risk of a secondary occurrence.…”

“Loneliness can also kill:” a qualitative exploration of outcomes and experiences of the SUPERB peer-befriending scheme for people with aphasia and their significant others

“…It appears there are no other studies exploring the specific impact on significant others of their family member receiving a befriending intervention. It is notable that one recent qualitative study [34] observed discordance between stroke survivors and their caregivers when describing the social and emotional repercussions. This suggests the relative importance of an intervention to address these issues may be different to the two groups.…”