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The Unmet Needs of Stroke Survivors and Stroke Caregivers: A Systematic Narrative Review

Zawawi NSM, Aziz NA, Fisher R, Ahmad K, Walker MF

J Stroke Cerebrovasc Dis, 2020 Aug;29(8):104875.
PMID: 32689648 DOI: 10.1016/j.jstrokecerebrovasdis.2020.104875

INTRODUCTION: Facilitating stroke survivors and their caregivers to lead a fulfilling life after stroke requires service providers to think about their different needs. Poor post stroke care may lead to unmet needs in stroke survivors and stroke caregivers. This may compromise them in leading their lives optimally after stroke.
OBJECTIVES & METHODOLOGY: This systematic narrative review examines articles published from 1990 to 2017, generated from Ovid, MEDLINE, CINAHL, and PubMed. The search was also supplemented by an examination of reference lists for related articles via Scopus. We included 105 articles.
FINDINGS: We found that the type of unmet needs in stroke survivors and the contributing factors were substantially different from their caregivers. The unmet needs in stroke survivors ranged from health-related needs to re-integration into the community; while the unmet needs in stroke caregivers ranged from information needs to support in caring for the stroke survivors and caring for themselves. Additionally, the unmet needs in both groups were associated with different factors.
CONCLUSION: More research is required to understand the unmet needs of stroke survivors and stroke caregivers to improve the overall post-stroke care services.
Fulltext Therapy-based rehabilitation services for patients living at home more than one year after stroke

Aziz NA, Leonardi-Bee J, Phillips M, Gladman JR, Legg L, Walker MF

Cochrane Database Syst Rev, 2008 Apr 16.
PMID: 18425928 DOI: 10.1002/14651858.CD005952.pub2

BACKGROUND: Current practice of rehabilitation intervention mainly concentrates on the first six months of stroke. At present, there is no agreed consensus about the benefits of such a service more than one year after stroke.
OBJECTIVES: To ascertain whether therapy-based rehabilitation services can influence outcome one year or more after stroke.
SEARCH STRATEGY: We searched the trials registers of the following Cochrane Review Groups: Stroke Group (last searched September 2007), Effective Practice and Organisation of Care Group (last searched October 2006) and Dementia and Cognitive Improvement Group (last searched October 2006). We also searched the Cochrane Central Register of Controlled Trials (CENTRAL) (The Cochrane Library Issue 4, 2006), MEDLINE (1966 to October 2006), EMBASE (1980 to October 2006), CINAHL (1982 to October 2006), AMED (1985 to October 2006), PEDro (1952 to October 2006), British Nursing Index (1993 to October 2006), DARE (1994 to October 2006), HMIC (1979 to October 2006) and NHS EED (1991 to October 2006). We also searched dissertation databases and ongoing trials and research registers, scanned reference lists and contacted researchers and experts in the field.
SELECTION CRITERIA: All randomised controlled trials of community-based stroke patients, in which at least 75% were recruited one year after stroke and received a therapy-based rehabilitation intervention that was compared with conventional care.
DATA COLLECTION AND ANALYSIS: Two review authors independently selected trials and extracted data on a number of pre-specified outcomes. The primary outcomes were the proportion of participants who had deteriorated or were dependent in personal activities of daily living at the end of scheduled follow up.
MAIN RESULTS: We identified five trials of 487 participants that were eligible for the review. Overall, there was inconclusive evidence as to whether therapy-based rehabilitation intervention one year after stroke was able to influence any relevant patient or carer outcome. Trials varied in design, type of interventions provided, quality, and outcomes assessed.
AUTHORS' CONCLUSIONS: This review highlights the dearth of evidence investigating long-term therapy-based rehabilitation interventions for patients with stroke.
Fulltext The Unmet Needs of Caregiving Skills, Support, Emotions, and Finances of Stroke Caregivers: A Multicenter Study

Mohd Zawawi NS, Abd Aziz NA, Fisher R, Ahmad K, Omar MA, Walker MF

Cureus, 2023 Aug;15(8):e44346.
PMID: 37779760 DOI: 10.7759/cureus.44346

Background Informal stroke caregivers in Malaysia play an important role in supporting stroke survivors following acute care. Nevertheless, there is a lack of available data to inform the sufficiency of help and resources available to address the needs of local stroke caregivers. This study aimed to determine the unmet needs in caregiving skills, support, emotions, and finances as well as the associated factors of stroke caregivers in Malaysia. Methodology This multicenter, cross-sectional study used a self-administered survey developed and validated for the Malaysian population. It was prepared in paper-based and web-based formats, and it was distributed via direct contact with the respondents, post, and email. Respondents were recruited from different sites in Malaysia. In this study, unmet needs were defined as "help that was needed more or was not provided to assist caregivers and address their specific needs." This article only presents the quantitative data of this study. Data were analyzed using descriptive analysis and logistic regression to determine factors associated with unmet needs. Results Almost all study respondents (91%) reported having unmet needs. Unmet needs ranged from 1 to 10, while the mean unmet needs was 5. The highest unmet need was related to financial support (72.5%), followed by support from professionals to address their own needs (59.2%), skills to care for stroke survivors, i.e., skills in caring for stroke survivors with their daily activities (57.9%), and skills in supporting stroke survivors to perform rehabilitation at home (53.1%). The lowest unmet need was related to support in transporting stroke survivors from place to place (45.3%). Additionally, this study did not identify an association between the reported unmet needs and gender, age, ethnicity, duration of caregiving, and site of participation. Conclusions This study reported a range of unmet needs perceived by stroke caregivers in Malaysia. Further research is warranted to understand the gaps in supporting local stroke caregivers to inform future post-stroke support and services in the country.
Fulltext Criteria and Indicators for Centers of Clinical Excellence in Stroke Recovery and Rehabilitation: A Global Consensus Facilitated by ISRRA

Stockley RC, Walker MF, Alt Murphy M, Azah Abd Aziz N, Amooba P, Churliov L, et al.

Neurorehabil Neural Repair, 2024 Feb;38(2):87-98.
PMID: 38212946 DOI: 10.1177/15459683231222026

BACKGROUND: The aim of the International Stroke Recovery and Rehabilitation Alliance is to create a world where worldwide collaboration brings major breakthroughs for the millions of people living with stroke. A key pillar of this work is to define globally relevant criteria for centers that aspire to deliver excellent clinical rehabilitation and generate exceptional outcomes for patients.
OBJECTIVES: This paper presents consensus work conducted with an international group of expert stroke recovery and rehabilitation researchers, clinicians, and people living with stroke to identify and define criteria and measurable indicators for Centers of Clinical Excellence (CoCE) in stroke recovery and rehabilitation. These were intentionally developed to be ambitious and internationally relevant, regardless of a country's development or income status, to drive global improvement in stroke services.
METHODS: Criteria and specific measurable indicators for CoCE were collaboratively developed by an international panel of stroke recovery and rehabilitation experts from 10 countries and consumer groups from 5 countries.
RESULTS: The criteria and associated indicators, ranked in order of importance, focused upon (i) optimal outcome, (ii) research culture, (iii) working collaboratively with people living with stroke, (iv) knowledge exchange, (v) leadership, (vi) education, and (vii) advocacy. Work is currently underway to user-test the criteria and indicators in 14 rehabilitation centers in 10 different countries.
CONCLUSIONS: We anticipate that use of the criteria and indicators could support individual organizations to further develop their services and, more widely, provide a mechanism by which clinical excellence can be articulated and shared to generate global improvements in stroke care.