ArticlePloS one2023
Information, involvement, self-care and support-The needs of caregivers of people with stroke: A grounded theory approach.
Article in PloS one, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 19 papers, 2 of them syntheses that pooled it.
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Who cites it
19 citing papers in PubMed, 2 syntheses or guidelines pooled it, 52 citations in OpenAlex.
- Optimising support for stroke caregiver burden: a systematic review and meta-analysis of randomised clinical trials on occupational therapy-related interventions.BMC neurology · 2026Pooled it
- Influences on the physical activity behaviour of inpatients after stroke outside of staff-led rehabilitation sessions: a systematic review.Clinical rehabilitation · 2025Pooled it
- Improving the quality of life and resilience of family caregivers of stroke survivors through education based on the Roy's adaptation model: a randomized controlled trial.Aging clinical and experimental research · 2025Trial
- Article
- Social connection and sociodemographic predictors of stroke caregivers' burden during COVID-19 pandemic lockdown.Frontiers in health services · 2026Article
- Knowledge, Attitudes and Practice of Informal Caregivers of People Living With Stroke: A Scoping Review of Recent Literature.Journal of advanced nursing · 2026Article
- The mediating role of caregiver guilt in the relationship between stroke patients' functional status and caregiver burden: A correlational study.International journal of nursing studies advances · 2025Article
- Knowledge, attitudes, and practices of healthcare workers on preventing postoperative deep vein thrombosis.Scientific reports · 2025Article
- Community-involved care transition interventions to support essential care partners of stroke survivors: a rapid review protocol.BMJ open · 2025Article
- Acute Stroke Management and Nursing Intervention.Cureus · 2025Review
- Influence of Partnership Relationships on Long-Term Neurological Rehabilitation in Germany: Protocol for a Qualitative Retrospective Study.JMIR research protocols · 2025Article
- Technology Use for Home-Based Stroke Rehabilitation in Switzerland From the Perspectives of Persons Living With Stroke, Informal Caregivers, and Therapists: Qualitative Interview and Focus Group Study.JMIR rehabilitation and assistive technologies · 2024Article
- Primary care management of mild cognitive impairment in a stroke survivor: A case report on facilitating return to work.Malaysian family physician : the official journal of the Academy of Family Physicians of Malaysia · 2024Article
- Transition experiences of patients with post stroke dysphagia and family caregivers: A longitudinal, qualitative study.PloS one · 2024Article
- Effects of a self-care educational program via telerehabilitation on quality of life and caregiver burden in amyotrophic lateral sclerosis: a single-blinded randomized clinical trial protocol.Frontiers in psychology · 2023Article
- Detecting user experience issues from mHealth apps that support stroke caregiver needs: an analysis of user reviews.Frontiers in public health · 2023Article
- Caregiver Engagement in Stroke Care: Opportunities and Challenges in Australia and Denmark.Frontiers in public health · 2021Article
- mHealth intervention for carers of individuals with a history of stroke: Heuristic evaluation and user perspectives.Digital healthArticle
- An Exploration of the Experiences of Informal Caregivers of Stroke Patients in Saudi Arabia; A Qualitative Study.SAGE open nursingArticle
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
8 authors at 3 institutions in 2 countries.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundGlobally, 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.
methodsThe 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.
resultsThe 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.
conclusionsThere 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.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.