Table 5 Summary of key behavioural and environmental factors and determinants that influence carer burden
Behavioural factors | • Avoiding asking for support from family and friends • Engaging in care role/ duties restricts time to self • Focusing on the stroke survivor means little time for engaging in own activities/time to self |
Personal determinants (carers) | • Build-up of strain over time (stroke) • Reluctance to ask family and friends for support due to feeling bothersome, not wanting to burden them • Lack of knowledge around who to ask and where to access support and information • Difficulties thinking about the future/worries about the future • Fears of stroke survivor safety, falling and setbacks, reoccurrence of stroke |
Environmental factors | • Rehabilitation support that lacks continuity at home and in the community (stroke) • Services and organisations that fail to engage in adequate planning as part of the stroke survivors’ rehabilitation (stroke) • Lack of support provided by professionals initially, influences coping with changed relationships, coping and managing practically • Lack of information provided about cause of stroke, extent of recovery, expectations before and during the transition from hospital to home, access to support, available support (before and following the return to home) |
Personal determinants (professionals, family, friends, peers) | • Professionals lack time to professionally prepare carers for the transition from hospital to home • Friends and family struggle to understand the situation |