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Information, involvement, self-care and support—The needs of caregivers of people with stroke: A grounded theory approach
journal contribution
posted on 2023-03-30, 03:00 authored by Elton LoboElton Lobo, Anne Frølich, Mohamed AbdelrazekMohamed Abdelrazek, Lene J Rasmussen, John Grundy, Patricia M Livingston, Shariful IslamShariful Islam, Finn KensingBackground
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 better support them in their caregiving journey 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) Information: sufficient information delivered in layman’s terms based on the individual situation of the caregiver and survivor through oral and hands-on demonstrations, (ii) Involvement: inclusion in the decision-making processes at different stages of recovery through face-to-face communication at the hospital, (iii) Self-care: ability to engage in work and leisure activities, (iv) Support: receive support in the form of resources, services and finances from different other stakeholders.
Conclusions
There is a need to create a caregiver-centered approach in stroke recovery to ensure limited obstruction to care and reduced uncertainty in stroke recovery. Moreover, through the inclusion of caregivers in stroke recovery, it may be possible to reduce the burden of care to the caregiver and ensure the satisfaction of the healthcare system throughout stroke recovery.
History
Journal
PLOS ONEVolume
18Article number
e0281198Pagination
1-25Location
United StatesPublisher DOI
ISSN
1932-6203eISSN
1932-6203Language
enPublication classification
C1 Refereed article in a scholarly journalEditor/Contributor(s)
Jutai JIssue
1Publisher
Public Library of Science (PLoS)Usage metrics
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