In the past few decades, there has been a shift in the overall global disease burden from infectious, nutritional, neonatal, and maternal causes to non-infectious diseases, with cardiovascular diseases and stroke being the predominant causes (1). Amongst cardiovascular disease and stroke, stroke remains a global health problem (2); as it is one of the leading causes of death and disability in the modern world (3). Recent data from the global burden of diseases study demonstrates that stroke accounts for 10% of deaths worldwide and 5% of disability-adjusted life-years (4). Moreover, the type of care provided to persons living with stroke over their lives depends on the type of stroke and its consequences (3). Over the years, ~3–4% of the total health expenditure in Western counties has been spent in stroke management and care. For example, the lifetime cost in the US for stroke inpatient care, rehabilitation and follow-up per person was estimated to be around US$ 140,048 (5). In Europe, the annual costs for stroke treatment and recovery were reported to be 27 billion euros (3). The increase in health care costs has resulted in the majority of care being conducted in the community rather than within health institutions (6) such as hospitals, rehabilitation centers etc. As a result, many family members, generally female spouses of the survivor with an average age of 58 years (7), take on the responsibility to become primary caregivers to people living with stroke (8) to ensure continuity of care.

The process of care in stroke is complex (9), and varies based on the needs, functional capabilities and support required by the person living with stroke (10). Most caregivers are often unprepared to assume their caregiving role immediately after stroke as it involves managing personal hygiene care, monitoring health and illness, administering medications, planning, and coordinating social activities and managing finances (11). Hence, several caregivers give up their dreams and aspirations to fulfill their new roles and responsibilities, which contributes to a significant burden (12). The burden of stroke caregiving is due to physical and financial strain, loneliness, confinement, and a myriad of mental and emotional strains that results in a negative health decline of the caregiver Camak (13). Furthermore, the disease is associated with long-term costs by the level of disability, with (14), estimating the cost per person in Spain to be around €17,618 per year, inclusive of informal care costs, medical costs and productivity-related costs. Another study by Taylor et al. (15) and Pucciarelli et al. (16) reported that individuals spent ~$3,700 on direct stroke-related (e.g., medical and non-medical) costs in Italy, with the highest cost incurred during the first 6 months of diagnosis. With most caregivers changing their work situations post-stroke, i.e., from full-time job to either a part-time job or leaving their job completely (17), there is a sudden loss of income due to the lack of work productivity. A previous study described the reduction in work productivity (18) amongst caregivers especially with older caregivers having children <18 years had resulted in a significant impact on the income levels (income < $25,000, P = 0.02; income between $25,000 and $49,999, P = 0.041 vs. those individuals with an income ≥75,000) (19). The loss of income and decreased work productivity makes it difficult to manage the financial aspects of stroke caregiving leading to additional stressors or burden (12).

Despite the burden involved in care, caregivers often want to be involved in recovery and provide tangible assistance and support for the person living with stroke (20). Engaging caregivers in the healthcare process is considered to be a key pillar in improving the effectiveness and sustainability of services (21). However, previous studies highlighted the lack of inclusion of caregivers in the recovery process; leading to the caregiver feeling neglected or abandoned by the healthcare team (22). Hence, there is a need to identify effective ways to engage the caregiver in the stroke recovery process to improve safety, quality and delivery of stroke care.

In an attempt to understand the process of engaging the caregiver in stroke within the community and recommend possible mechanisms to support the caregiver, we consider a multi-country perspective; including two developed countries (i.e., Denmark and Australia) with a publicly funded healthcare system (23). The process of stroke care in Denmark and Australia were reviewed as they have recently gained widespread public, political and academic interest for providing volunteer-based care in the community (24); with considerable differences. For example, in Denmark, people with stroke are provided professional and financial support for volunteer-based activities (25), which is not the same in Australia where people with stroke are often supported by the family members in coordination with the healthcare professional (26). Despite this difference, these volunteers may require support and training to manage the person living with stroke and perform self-support (27). Moreover, these countries allow for the individuals to access their health data; to promote self-management and care (28) that could be beneficial for long-term recovery of the patient and engagement for the caregiver (29).

Caregiver engagement refers to an active partnership between the patients, families, and health care providers at various levels to improve health outcomes (30), which is central for person-centered care (31). The caregiver engagement at direct level focuses on information seeking, consultation and involvement in decision making (21), while at an organization and societal level it focuses on shared leadership required to develop better health policies (32). Active engagement by the caregiver has the potential to reduce healthcare costs, reduce burnout, improve care processes and improve patient outcomes (30). Despite these advantages in transforming healthcare delivery and policy, very little is known about strategies to engage caregivers during the stroke care trajectory effectively. Hence, in this section, we identify means to improve caregiver engagement at different levels, i.e., planning, recovery and policymaking.

Findings from this perspective demonstrate both theoretical and practical implications. First, the importance of engagement in stroke caregiving has been defined as a means to promote better quality care in the community, while ensuring improved decision-making and satisfaction in care. However, this process would involve proper education, skill generation and communication to contribute to the recovery process (21). Traditionally, healthcare organizations are expected to provide support to the caregiver to facilitate development in these aspects that are evident in the literature based on Danish and Australian contexts (40, 50, 56). However, caregivers report being unaware of these services leading to uncertainty and isolation in care (51). Moreover, very little research has been conducted in stroke caregiving engagement to understand the influence of such factors on the activities of the caregiver during the recovery trajectory. Additionally, healthcare policies in Denmark and Australia for stroke, do not account for engagement of the caregiver, and thus results in an uncertainty amongst the caregiver and the person living with stroke.

This study, highlights the need to develop the evidence to support stroke caregiving engagement by addressing the possible factors affecting the caregiver at different stages of health planning, recovery, and policymaking. Additionally, a detailed understanding of the processes involved in stroke care, available services and individual needs and experiences to create a more practical approach toward engagement with whom.

Caregiver engagement in stroke that is targeted to the different levels of care have the potential to reduce unmet needs and promote interaction with medical professional in an on-going basis. However, this would require the formation of relationships between the various stakeholders in recovery. Hence, there is a need to include public health policies that can promote caregiver engagement; especially in countries such as Denmark and Australia, where the primary focus of stroke care occurs within the community. Furthermore, there is a need for theoretical and practical evidence to highlight the potential of caregiving engagement in improving quality of care outcomes for the person living with stroke.

The original contributions presented in the study are included in the article/supplementary material, further inquiries can be directed to the corresponding author/s.

EL initiated this study to identify the models of care in stroke recovery, the contributions of the various stakeholders in ensuring efficient care to the person living with stroke using evidence-based perspectives, and performed this study under the supervision of AF and SI. Further, EL drafted the manuscript that was revised by AF, SI, LR, PL, FK, MA, and JG. All authors approved the final version of the manuscript.

This study was supported through doctoral scholarships from the School of Information Technology, Deakin University, and the Department of Public Health, University of Copenhagen. JG was supported by an Australian Research Council Laureate Fellowship FL190100035.

The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.

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