Information, Involvement, Self-care and Support - The Needs of Caregivers of People with Stroke: A Grounded Theory Approach

Abstract

Background: Globally, stroke is a leading cause of death and disability, with most care undertaken by caregivers who are generally family and friends without prior experience of care. The lack of experience or unpreparedness results in feelings of uncertainty, burnout, anxiety, burden, etc. Hence, it is necessary to identify the needs of caregivers to support them in their caregiving journey better and improve the quality of care delivered. Methods: The study employed a grounded theory methodology that utilizes information gathered from literature reviews and social media to represent the needs and create a storyline visually. The storyline is further refined and evaluated using an online survey of 72 participants recruited through online stroke caregiving communities. Results: The study identified four core categories of needs, i.e., information, involvement, self-care and support that need to be delivered at appropriate times to ensure the caregivers feel prepared to assume their role of care and are supported throughout the care trajectory. Conclusions: There is a need to create a caregiver-centered approach in stroke recovery to ensure limited obstruction to care and reduced uncertainty in recovery. Moreover, through the inclusion of caregivers in the recovery process, it may be possible to reduce the burden of care to the caregiver and ensure the satisfaction of the healthcare system throughout recovery.

mHealth intervention for carers of individuals with a history of stroke: Heuristic evaluation and user perspectives

“… 16 , 17 Initially, the authors understood the needs of family carers in their daily care activities based on data collected from literature, social media and surveys, reported and submitted elsewhere. 18 Using a grounded theory approach for interpreting such data, 19 the mHealth intervention was developed and evaluated in a real-world setting as presented in this study.…”

“…This mobile intervention technology was developed by understanding carers’ needs in their daily care activities as described above. 18 This mobile intervention technology prototype consists of four key features: (i) information delivery, (ii) survivor and carer health monitoring, (iii) social communication and (iv) task scheduling and sharing, as shown in Figure 1 and are described below: The information delivery feature consists of a personalized recommendation system that uses ontologies consisting of user profiles, activities and interests. The algorithm combines a domain-based inference method and semantic reasoning method, which provides a measure of affinity between the user and the item described by the ontology to provide information more effectively and accurately. The survivor and carer health monitoring feature consists of tools to monitor health vitals such as blood pressure, blood glucose, physical activity, heart rate and weight.…”

“…This mobile intervention technology was developed by understanding carers' needs in their daily care activities as described above. 18 This mobile intervention technology prototype consists of four key features: (i) information delivery, (ii) survivor and carer health monitoring, (iii) social communication and (iv) task scheduling and sharing, as shown in Figure 1 and are described below:…”

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

“…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).…”

“…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).…”