Ana Moura1,2,3, Filipa Teixeira4,5, Mariana Amorim4,5, Ana Henriques4,5, Conceição Nogueira6, Elisabete Alves4,5. 1. EPIUnit-Instituto de Saúde Pública, Universidade do Porto, Porto, Portugal. ana.moura@ispup.up.pt. 2. Faculty of Psychology and Education Sciences, Centre for Research and Intervention in Education (CIIE), University of Porto, Porto, Portugal. ana.moura@ispup.up.pt. 3. Laboratório para a Investigação Integrativa e Translacional em Saúde Populacional (ITR), Porto, Portugal. ana.moura@ispup.up.pt. 4. EPIUnit-Instituto de Saúde Pública, Universidade do Porto, Porto, Portugal. 5. Laboratório para a Investigação Integrativa e Translacional em Saúde Populacional (ITR), Porto, Portugal. 6. Faculty of Psychology and Education Sciences, Center for Psychology at University of Porto, University of Porto, Porto, Portugal.
Abstract
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.
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.