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Table 5 Summary of key behavioural and environmental factors and determinants that influence carer burden

From: Supporting carers of stroke survivors to reduce carer burden: development of the Preparing is Caring intervention using Intervention Mapping

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