Caregiver Engagement in Stroke Care: Opportunities and Challenges in Australia and Denmark

Abstract

Globally, there is a rise in incident cases of stroke, particularly in low- and middle-income countries, due to obesity-related and lifestyle risk factors, including health issues such as high cholesterol, diabetes and hypertension. Since the early 20th century, stroke mortality has declined due to proper management of the risk factors and improved treatment practices. However, despite the decline in mortality, there is an increase in the levels of disability that requires long-term support. In countries such as Australia and Denmark, where most care is provided within the community; family members, generally spouses, assume the role of caregiver, with little to no preparation that affects the quality of care provided to the person living with stroke. While past research has highlighted aspects to improve caregiver preparedness of stroke and its impact on care; health planning, recovery, and public health policies rarely consider these factors, reducing engagement and increasing uncertainty. Hence, there is a need to focus on improving strategies during recovery to promote caregiver engagement. In this study, we, therefore, try to understand the needs of the caregiver in stroke that limit engagement, and processes employed in countries such as Australia and Denmark to provide care for the person with stroke. Based on our understanding of these factors, we highlight the potential opportunities and challenges to promote caregiving engagement in these countries.

Exploring the shared experiences of people with stroke and caregivers in preparedness to manage post‐discharge care: A hermeneutic study

“…Co‐design in healthcare is defined as a partnership between patients, their family/caregivers and health service providers to develop a person‐centred care plan/intervention with the aim of achieving better outcomes or improved efficiency (Ward et al, 2018). Engaging people with stroke and their caregivers in co‐designing post‐stroke care leads to better care outcomes (Jones et al, 2020; Lobo et al, 2021). Increased understanding of stroke dyads interdependent nature in post‐discharge care would encourage stroke nurses to lead the revision of conventional practice in discharge planning and advocate for a co‐design approach.…”

Information, involvement, self-care and support—The needs of caregivers of people with stroke: A grounded theory approach

“…For example, during the first few weeks at home the needs are more related to the practical aspects of providing care, while over longer periods the focus is towards community reintegration [ 60 ]. Hence, demonstrating for a need for change in delivery of healthcare in stroke recovery [ 61 ], with focus towards providing a more personalized, flexible and available support as much as required by the caregiver of the person living with stroke [ 62 ].…”

“…A study by Lobo et al [ 61 ] describes that to facilitate active engagement, caregivers often need to be informed about the disease, rehabilitation and decision making processes. The influence of actively engaging the caregiver in the recovery process is supported both in our findings and in the literature.…”

Stress in Caregivers of Stroke Patients During Rehabilitation: An Observational Study

“…In an experimental study by Farahani et Even though previous studies have highlighted elements that can help caregivers be better prepared for stroke and its effects on care, health planning, recovery, and public health policies seldom take these concerns into account, which lowers participation and increases uncertainty. Therefore, it is important to concentrate on developing recovery-related methods that encourage caregiver engagement [18].…”