Recovering from stroke can be a complex and confronting process – and the transition from hospital to home represents an especially challenging period for people with stroke and their caregivers.
Taking charge of adequate care becomes even more challenging due to shortened hospital stays and complex care needs – but research being driven by Flinders’ Caring Futures Institute is exploring myriad ways to improve the care of everyone dealing with the aftermath of stroke.
To better understand the care needs and expectations of hospital-to-home transition from the perspectives of people with stroke, their caregivers and health professionals in South Australia, Langduo Chen is investigating their individual and collective care needs and expectations as her PhD study at Flinders University’s College of Nursing and Health Sciences, supervised by Professor Lily Xiao and Professor Di Chamberlain.
Data has been collected through interviews with people with stroke and caregivers before hospital discharge, at 3 and 6 months after discharge, and further interviews undertaken with stroke care clinicians.
The research showed that perceived preparedness to manage post-discharge care for people with stroke was influenced by their psychological and emotional state, resilience and level of engagement in discharge planning – and they saw that returning home was a significant milestone in their post-stroke trajectory. However, by comparison, caregivers expressed profound uncertainties about their role and how to take over care after discharge from hospital, as a consequence of them not being fully engaged in discharge planning.
“After discharge, people with stroke and their caregivers can experience setbacks due to physical and psychosocial factors,” says Langduo. “They perceived dyadic interdependence which generated positive impacts on their adaptation to challenging situations.”
Caregivers play a key role in providing psychological support for people with stroke, but their role is not fully recognised or supported in the health care system. They expect enhanced communication, engagement in discharge planning and needs-driven service provision.
Additionally, the research found that health professionals believe that prioritising safety and continuity of care enhanced the transition, and also helped them cope with work-related challenges.
This subject has been explored further in more of Langduo’s published research – “Exploring the shared experiences of people with stroke and caregivers in preparedness to manage post-discharge care: A hermeneutic study” – which identifies similarities and differences in perceived preparedness to manage post-discharge care between people with stroke and caregivers. This reinforces the call to co-design the development and implementation of discharge plans that can enhance post-discharge care.
“To ensure effective hospital-to-home transition, we must understand the shared experiences of people with stroke and their caregivers in preparedness for post-discharge care, because this enables nurses to take proactive actions that facilitate the management of post-discharge care,” says Langduo.
Early identification of those at risk of developing psychological stress will enable nurses to co-develop appropriate and effective stress-coping strategies – and these will have a positive influence on both people with stroke and their caregivers when facing setbacks due to stroke-related complications.
This builds on Langduo’s earlier research – “First-time stroke survivors and caregivers’ perceptions of being engaged in rehabilitation” – as well as her systematic review to identify enablers and barriers in hospital-to-home transitional care for people with stroke and caregivers, published in the Journal of Clinical Nursing.
This review identified three major findings. Firstly, partnerships between people with stroke and caregivers empower their discharge preparation, foster their competence to navigate health and social care systems and help them to activate self-management capabilities.
Secondly, gaps in discharge planning and the lack of timely support after discharge contribute to unmet care needs and affect ability to cope with post-stroke changes for people with stroke and caregivers.
Thirdly, people with stroke and caregivers expect integrated transitional care that promotes shared decision-making and enables long-term self-management at home.
“This all shows that protocols and clinical guidelines relating to discharge planning and transitional care need to be reviewed to ensure a partnership approach for people with stroke and caregivers in the design and delivery of individualised transitional care,” says Langduo.
“To achieve this, stroke nurses are in a unique position to lead timely support for people with stroke and caregivers, and to bridge service gaps in hospital-to-home transitional care.”