A scoping review on studies about the quality of life of informal caregivers of stroke survivors

Purpose To assess the available evidence regarding the quality of life (QoL) of informal caregivers of stroke survivors, by identifying the instruments used to assess QoL, and its associated characteristics. Methods A scoping review was performed, following PRISMA-ScR guidelines. The electronic databases PubMed, ISI Web of Science, PsycINFO, and SciELO were searched for empirical, peer-reviewed, original, and full-length studies on the characteristics influencing the QoL of informal caregivers of stroke survivors. Eligibility and data extraction were conducted by two independent researchers. The main quantitative findings were synthesized, and qualitative data were explored by thematic content analysis. Results The included studies, 56 quantitative, 1 qualitative, and 1 mixed methods, were published between 1999 and 2020. A high heterogeneity was found regarding the assessment of QoL, and the characteristics influencing it. Only one study used an instrument specifically designed to assess the stroke caregivers' QoL. The QoL of informal caregivers was inversely associated with physical and mental health of stroke survivors and caregivers, while stroke characteristics with a better prognosis, caregivers' positive relationships, and a more supportive and participative social context were positively associated to QoL. Conclusion There is a need for standardizing the assessment of the QoL of informal caregivers of stroke survivors, as well as for investing in cross-country/cultural studies with robust mixed methods designs to allow a deeper understanding of the experiences of caregivers. Further research, policies, and practices should consider the diversity and complexity of the characteristics influencing QoL, to empower informal caregivers and improve their QoL.