Needs of Stroke Survivors as Perceived by Their Caregivers

Krishnan, Shilpa; Pappadis, Monique R.; Weller, Susan C.; Stearnes, Marsja; Kumar, Amit; Ottenbacher, Kenneth J.; Reistetter, Timothy

doi:10.1097/phm.0000000000000717

Cited by 50 publications

(33 citation statements)

References 93 publications

(397 reference statements)

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“…We summarised information extracted from included studies in tables, and narratively described the main characteristics, methodological quality and study results. Reported unmet needs were categorised under three meta-themes: body functional needs, activity/participatory needs and environmental needs,9 according to the International Classification of Functioning, Disability and Health (ICF) Core Sets for Stroke framework 13. Proportions with 95% CIs of unmet needs were calculated using the Freeman-Tukey transformation methods 14.…”

Section: Methodsmentioning

confidence: 99%

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Long-term unmet needs after stroke: systematic review of evidence from survey studies

et al. 2019

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ObjectivesTo synthesise evidence on longer term unmet needs perceived by stroke survivors, and psychometric properties of the tools used to evaluate unmet care needs after stroke.DesignSystematic review.SettingCommunity or patients’ home.ParticipantsStroke survivors.MethodsWe searched PubMed, PsycINFO, CINAHL, EMBASE from inception to 31 March 2018 to identify survey studies that evaluated unmet needs perceived by stroke survivors after hospital discharge. Reported unmet needs were categorised under three domains: body functioning, activity/participation and environmental factors. Ranges of prevalence rates of unmet needs reported in studies were presented.ResultsWe included 19 eligible studies, with considerable heterogeneity in patients, survey methods and results. Psychometric properties of two stroke-specific tools were formally evaluated, indicating their moderate reliability and content/concurrent validity. The median number of reported unmet needs per stroke survivor was from two to five, and the proportion of stroke survivors with at least one unmet needs was on average 73.8% (range 19.8%– 91.7%). Unmet needs perceived by stroke survivors included 55 records of unmet body functioning needs, 47 records of unmet activities/participatory needs and 101 records of unmet environmental needs. Common unmet service needs were unmet information needs (3.1%– 65.0%), transport (5.4%–53.0%), home help/personal care (4.7%–39.3%) and therapy (2.0%–35.7%).ConclusionsThe prevalence of unmet long-term needs is high among stroke survivors, and there is considerable heterogeneity in type and frequency of specific unmet needs. More research is required to link regular assessment of long-term unmet needs of stroke survivors with the provision of cost-effective patient-centred health and social care services.

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Section: Methodsmentioning

confidence: 99%

“…Well-conducted survey studies provide quantitative estimates of unmet needs after stroke to inform health and social care policies. Existing systematic reviews focused mainly on specific types of unmet needs or that perceived by carers 9 10. Furthermore, there was no systematic assessment of tools used to evaluate unmet needs after stroke.…”

Section: Introductionmentioning

confidence: 99%

Long-term unmet needs after stroke: systematic review of evidence from survey studies

et al. 2019

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“…The vast majority of research identifies the needs of stroke survivors through both a caregiver's [11] and clinicians' [12] perspective. A recent scoping review conducted by the National Institute of Health on research concerning needs of stroke survivors have highlighted the need for and importance of new studies which primarily use the perspective of stroke survivors directly, as well as integrates caregiver perspectives in instances where survivors may suffer cognitive deficiencies which impair them from an effective response [13]. In addition, additional research notes the need for research concerning the needs of survivors within stroke support group populations [14].…”

Section: Introductionmentioning

confidence: 99%

Stroke Survivors: Needs, Wellness and Warning Signs in a Stroke Support Group Population

Nagar¹,

Ashaye²

2018

J Neurol Exp Neurosci

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Aim: This study was designed to investigate needs of stroke survivors in stroke support groups, including their knowledge of warning signs, and the effectiveness of their care provider in acquiring rehabilitation services, from the perspective of the stroke survivor. Background: According to the Centers for Disease Control and Prevention (CDC), almost 800,000 patients have a stroke each year, with 140,000 patients dying annually. Survivors are at high risk of a second stroke. Patients may have a host of differing needs to both maintain wellness and acquire the necessary knowledge to identify and prevent a secondary stroke. Research about the perspective of stroke survivors in a stroke support group concerning their needs, caregiver satisfaction, and wellness, is limited and in need of further study. Design: A five-question pilot survey. Methods: This study was conducted in the Stroke Survivors Empowering Each Other (SSEEO) stroke support group, a national stroke support network. Questions asked about patient knowledge of stroke warnings signs, their wellness needs, and the helpfulness of their caregivers in acquiring both. The study had 52 participants from 80 total invitees, a response rate of 65%, evenly distributed from ages 20 to 83. Forty-two respondents were survivors of an ischemic stroke, while 10 were survivors of a hemorrhagic stroke. There were 25 women and 27 males who participated in the study, and all were computer-literate and active members of the stroke survivor network. Forty-eight of the participants directly responded while a caregiver aided four respondents in accessing the study. Members suffered from a broad range of disabilities, including motor and minor language deficits. Results: Patients reported a high level of knowledge of warning signs (95%); however only about half (53%) had ever had warning signs discussed with a care provider. Patients reported physical therapy (26%) and increased support group interaction (17%) as their primary needs. A majority of patients (52%) were somewhat or not-at-all satisfied with the assistance of their caregiver in achieving their wellness needs. Conclusions: Patients reported a general lack of satisfaction with caregiver information about warning signs and in achieving wellness needs. However, patients said that they knew the warning signs of a stroke irrespective of their caregiver helpfulness. Patients reported primary needs for physical, speech and occupational therapy. Clinical Implementation: Caregivers should consider increasing the amount of time spent discussing stroke warning signs with their patients. Caregivers should also consider attempting to ask stroke survivors as to their perceived needs actively and try to resolve them.

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“…9 Therefore, in addition to the specific medical and rehabilitative interventions, preventing stroke recurrence is an essential element of post-stroke patient care. 10 Secondary stroke prevention comprises of several approaches, including nutritional interventions, anti-hypertensive measures, anticoagulation, antiplatelet therapy, lipidlowering therapy, and management of intracranial stenosis. 11 The key to select the best managemental approach is to identify the cause of the event.…”

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confidence: 99%

Secondary stroke prevention among stroke survivors in Riyadh city, Saudi Arabia

Alhusayni

Abanmi

Abanemai

et al. 2020

NSJ

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Objectives: To assess knowledge about secondary stroke and adherence to stroke discharge medication and prevention strategies among stroke survivors, and to identify possible causes of poor adherence. Methods: A cross-sectional study that involved 82 stroke survivors who were treated at Prince Mohammed Bin Abdulaziz Hospital (PMAH) in Riyadh, Saudi Arabia, from July 2015 to August Original Article 2018. Patient adherence level (PAL) was assessed using a tool developed by Sidorkiewicz et al (2016). Results: Of the 82 participants, 63.4% believed that the risk of secondary stroke is higher and 70.7% believed it would results in worse outcome, compared to primary stroke. Out of a list of 7 preventive strategies, treating risk factors (80.5%), keeping a healthy diet (65.9%) and regular exercise (63.4%) were the most frequently identified. Forgetfulness (51.2%), polypharmacy (18.3%) and patientperceived improvement (17.1%) were the most frequently reported causes for nonadherence. At the patients' level, PAL was adequate among 46.8%, and was higher among females (60.0% versus 35.7%, p=0.033) and married (52.2% versus 0.0%, p=0.006) ones, and lower among smokers (22.2% versus 54.2%, p=0.029), compared to their counterparts. No correlation of adherence level with knowledge was observed. Regression showed approximation to statistical significance for smoking (OR=4.28 [0.99, 18.41], p=0.051) as a predictor for inadequate adherence. Conclusion: Stroke survivors have suboptimal adherence to discharge prescriptions and preventive strategies, despite a relatively sound knowledge, which exposes them to high risk of secondary stroke. It is part of the healthcare providers' role to identify eventual barriers to adherence and to implement efficacious strategies to alleviate such barriers and improve patients' adherence.

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Needs of Stroke Survivors as Perceived by Their Caregivers

Cited by 50 publications

References 93 publications

Long-term unmet needs after stroke: systematic review of evidence from survey studies

Long-term unmet needs after stroke: systematic review of evidence from survey studies

Stroke Survivors: Needs, Wellness and Warning Signs in a Stroke Support Group Population

Secondary stroke prevention among stroke survivors in Riyadh city, Saudi Arabia

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