Unmet care needs of community-dwelling stroke survivors: a systematic review of quantitative studies.
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ABSTRACT: Objectives
Understanding the unmet needs of community-dwelling stroke survivors is essential for further intervention. This systematic review was performed to summarise their unmet needs from a quantitative viewpoint.Design
Systematic review using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines.Data sources
A comprehensive search of six databases was conducted from inception to February 2020: PubMed, EMBASE, CINAHL, PsycINFO, SCOPUS and CBM. The methodological quality of the studies was assessed. Unmet needs were categorised, and a pooled analysis of the main outcomes was conducted.Eligibility criteria for selecting studies
We included quantitative studies focused on the unmet needs of stroke survivors who live at homes rather than in any other institutionalised organisation.Results
In total, 32 of 2660 studies were included, and 1980 unmet needs were identified. The prevalence of patients with unmet needs ranged from 15.08% to 97.59%, with a median of 67.20%; the median number of unmet needs per patient ranged from 2 to 8 (0-31). The prevalence of unmet needs was high at 6 months post-stroke (62.14%) and 2 years post-stroke (81.37%). After categorisation, the main concerns among these patients were revealed to be information support, physical function and mental health; a few studies reported unmet needs related to leisure exercise, return to work and so on. Additionally, differences in the measurement tools used across studies affect what unmet needs participants report.Conclusions
Sufficient, accurate, individualised and dynamic information support is a priority among community-dwelling stroke survivors. Physical function and mental health are also the most significant concerns for re-achieving social participation. It is essential to design and disseminate standard, effective and time-saving tools to assess unmet needs.Trial registration number
CRD42018112181.
SUBMITTER: Lin BL
PROVIDER: S-EPMC8061855 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:IntroductionStroke is a leading cause of disability worldwide. The average hospital length of stay ranges from 3 to 28 days, and after discharge home the stroke survivors will live with physical, cognitive, even psychological disorders for the rest of their lives. It is essential to review the unmet needs of stroke survivors.Methods and analysisA systematic review of previous quantitative and qualitative studies reporting the unmet needs of stroke survivors in their homes will be conducted. The following six databases will be searched from inception to December 2018 for relevant articles: PubMed, EMBASE, CINAHL, PsycINFO, SCOPUS and China Biology Medicine. We will include studies limited to human and published in English or Chinese, and the patients with stroke should discharge home rather than any other professional organisations including nursing homes or community rehabilitation units and so on. Data of quantitative research will be standardised for comparison, thematic analysis will be used for qualitative data and a narrative synthesis and pooled analysis of the main outcomes will be reported.Ethics and disseminationThis review will be submitted to an international professional journal, and the detailed search strategies and analysis flowchart will be openly included as supplements. This study does not require ethical approval as no patient's identifiable data will be used. Our findings will give a new look at the aspect of stroke survivors' unmet needs in their long-term recovery stage, especially the trajectories of unmet needs at different timepoints. What is more, this review will demonstrate the long-term unmet needs of stroke survivors from different countries, will compare any variations between high-income and low-income regions, and the geographical differences of needs will be mapped if necessary. We will endeavour to provide as much information as possible to healthcare professionals and public health policy makers in order to promote further medical reform.Trial registration numberCRD42018112181.
| S-EPMC6596939 | biostudies-literature
Project description:The unmet needs perceived by community-dwelling stroke survivors may truly reflect the needs of patients, which is crucial for pleasant emotional experiences and a better quality of life for community-dwelling survivors not living in institutionalized organizations. The purpose of the study is to identify the scope of unmet needs from the perspectives of stroke patients in the community. A qualitative meta-synthesis was performed according to the Joanna Briggs Institute method. Six electronic databases were searched from inception to February 2020. A total of 24 articles were involved, providing data on 378 stroke survivors. Eight categories were derived from 63 findings, and then summarized into four synthesized findings based on the framework of ICF: (1) unmet needs regarding with the disease-related information; (2) unmet physical recovery and activity/participation needs; (3) unmet needs for social environmental resources; (4) unmet psycho-emotional support needs. We found the framework of ICF mostly complete, but unmet information needs still remain. The needs that are mainly unsatisfied include physical, psychosocial and informational, as well as the practical support from professional or environment resources. The ever-present unmet needs perceived by community-dwelling stroke survivors who do not live in institutions are discoverable and mitigable. Future studies should focus on quantifying unmet needs comprehensively derived from experiential domains, assessing the rationality of the unmet needs expressed by patients' perspectives and developing flexible strategies for long-term and changing needs.
| S-EPMC7926407 | biostudies-literature
Project description:INTRODUCTION:Stroke events deeply affect not only the stroke survivor but also often the quality of life and physical and psychological health of the family and friends who care for them. There is a need for further information about the unmet needs of these informal carers in order to develop support services and interventions. The primary objective of this review is to report and synthesise the research describing the unmet needs of carers of stroke survivors. METHODS AND ANALYSIS:A systematic review of quantitative and qualitative studies that report on the unmet needs of carers will be conducted. The following databases will be searched for relevant articles: MEDLINE, Cumulative Index to Nursing and Allied Health Literature, PsycINFO, EMBASE, Allied and Complementary Medicine Database and Scopus. No publication date constraints will be applied. Studies will be limited to those published in English and conducted among humans. Eligible studies will report on the unmet needs of informal carers of stroke survivors, defined as family members, friends and other unpaid caregivers. Studies which focus on formal, clinical or medical caregivers will be excluded. A narrative synthesis and pooled analysis of the main outcomes will be reported. ETHICS AND DISSEMINATION:This review will be submitted to a peer-reviewed journal. Our findings are expected to provide new insights into the unmet needs of stroke survivors' carers. Knowledge about the unmet needs of carers will inform the development and refinement of interventions and services to address these needs and better support carers of stroke survivors. The findings of this systematic review will be disseminated publicly and in peer-reviewed journals and may be the topic of research presentations. TRIAL REGISTRATION NUMBER:CRD42017067391.
| S-EPMC5878248 | biostudies-literature
Project description:Stroke survivors encounter significant limitations in daily life activities and face increased risk of health complications such as stroke recurrence. Considering the escalating demand for personalised community rehabilitation services, this qualitative study was conducted to understand the current recovery experiences, needs, and expectations of community-dwelling stroke survivors. Fifty stroke survivors were recruited from two tertiary teaching hospitals and community centres in two provinces in mainland China. Semi-structured interviews were carried out, and participants were asked to describe their experiences of stroke, current lifestyles, exercise habits, and rehabilitation needs and expectations. Resulting data were thematically analysed. The majority of participants were first-time stroke survivors (80%) and lived with their family or caregivers (92%). Four main themes and twelve sub-themes emerged from the data: (1) shifts in social life, (2) shaken sense of self and perceived helplessness, (3) complex rehabilitation needs, and (4) perceptions and patterns of physical activity. Findings suggest that though survivors recognised their need for further rehabilitation, their demands remained unmet due to a combination of personal and external factors such as limited mobility and the absence of supportive companions and accessible facilities. The enhancement and diversification of home rehabilitation strategies are therefore necessary to make community rehabilitation more accessible and equitable.
| S-EPMC9741278 | biostudies-literature
Project description:OBJECTIVES:To 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. DESIGN:Systematic review. SETTING:Community or patients' home. PARTICIPANTS:Stroke survivors. METHODS:We 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. RESULTS:We 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%). CONCLUSIONS:The 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.
| S-EPMC6530326 | biostudies-literature
Project description:BackgroundStroke survivors constantly feel helpless and unprepared after discharge from hospitals. More flexible and pragmatic support are needed for their optimized recovery. We examined the effects of a virtual multidisciplinary stroke care clinic on survivors' health and self-management outcomes.MethodsA randomized controlled trial was conducted. Survivors were recruited from 10 hospitals and randomized at 1:1 ratio into the intervention or the control groups. Intervention group participants received the Virtual Multidisciplinary Stroke Care Clinic service (monthly online consultations with a nurse, follow-up phone calls, and access to an online platform). Control group participants received the usual care. Outcomes of self-efficacy (stroke self-efficacy questionnaire; primary), self-management behaviors (Stroke Self-Management Behaviors Performance Scale), social participation (reintegration to normal living index), and depression (Geriatric Depression Scale; secondary) were measured at baseline, and 3 and 6 months after commencing the intervention (post-randomization). A generalized estimating equations model was used to compare the differential changes in outcomes at 3 and 6 months with respect to baseline between 2 groups.ResultsBetween July 2019 and June 2022, 335 eligible participants were enrolled in the study. Participants (intervention group; n=166) showed significantly greater improvements in outcomes of self-efficacy (group-by-time interaction regression coefficient, B=4.60 [95% CI, 0.16 to 9.05]), social participation (B=5.07 [95% CI, 0.61 to 9.53]), and depression (B=-2.33 [95% CI, -4.06 to -0.61]), and no significant improvement in performance of self-management behaviors (B=3.45, [95% CI, -0.87 to 7.77]), compared with the control group (n=169) right after the intervention (6 months after its commencement). Hedges' g effect sizes of the intervention on outcomes: 0.19 to 0.36.ConclusionsThe results provide some positive evidence on the usefulness of the Virtual Multidisciplinary Stroke Care Clinic service. The effect sizes are regarded as small to medium, which may not be of clinical relevance. The baseline levels in outcomes were in favor of the control group, the intervention effects might be overestimated. The service must be tested further to determine its effectiveness.RegistrationURL: https://www.chictr.org.cn; Unique identifier: ChiCTR1800016101.
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Project description:OBJECTIVES:To design a questionnaire and use it to explore unmet needs with practical aspects of medicine taking after stroke, predictors of medicine taking and to estimate the proportion of survivors who get support with daily medication taking. DESIGN:Four workshops with stroke survivors and caregivers to design the questionnaire.A cross-sectional postal questionnaire in primary care. SETTING:18 general practitioner practices in the East of England and London. Questionnaires posted between September 2016 and February 2017. PARTICIPANTS:1687 stroke survivors living in the community outside institutional long-term care. PRIMARY OUTCOME MEASURES:The proportion of community stroke survivors receiving support from caregivers for practical aspects of medicine taking; the proportion with unmet needs in this respect; the predictors of experiencing unmet needs and missing taking medications. RESULTS:A five-item questionnaire was developed to cover the different aspects of medicine taking. 596/1687 (35%) questionnaires were returned. 56% reported getting help in at least one aspect of taking medication and 11% needing more help. 35% reported missing taking their medicines. Unmet needs were associated with receiving help with medications (OR 5.9, P<0.001), being on a higher number of medications (OR 1.2, P<0.001) and being dependent for activities of daily living (OR 4.9, P=0.001). Missing medication was associated with having unmet needs (OR 5.3, P<0.001), receiving help with medications (OR 2.1, P<0.001), being on a higher number of medicines (OR 1.1, P=0.008) and being older than 70 years (OR 0.6, P=0.006). CONCLUSIONS:More than half of patients who replied needed help with taking medication, and 1 in 10 had unmet needs in this regard. Stroke survivors dependent on others have more unmet needs, are more likely to miss medicines and might benefit from focused clinical and research attention. Novel primary care interventions focusing on the practicalities of taking medicines are warranted.
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Project description:ObjectiveAdvance directives (ADs) are integral to health care, allowing patients to specify surrogate decision-makers and treatment preferences in case of loss of capacity. The present study sought to identify determinants of ADs among stroke survivors.MethodsIn this cross-sectional study (Care Attitudes and Preferences in Stroke Survivors [CAPriSS]), community-dwelling stroke survivors were surveyed on ADs; validated scales were used to query palliative care knowledge and attitudes towards life-sustaining treatments. Logistic regression was used to determine variables associated with ADs.ResultsAmong 562 community-dwelling stroke survivors who entered the survey after screening questions confirmed eligibility, 421 (74.9%) completed survey components with relevant variables of interest. The median age was 69 years (IQR 58-75 years); 53.7% were male; and 15.0% were Black. Two hundred and fifty-one (59.6%) respondents had ADs. Compared to stroke survivors without ADs, those with ADs were more likely to be older (median age 72 vs. 61 years; p<0.001), White (91.2% vs. 75.9%, p<0.001), and male (58.6% vs. 46.5%, p = 0.015), and reported higher education (p<0.001) and income (p = 0.011). Ninety-eight (23.3%) participants had "never heard of palliative care". Compared to participants without ADs, participants with ADs had higher Palliative Care Knowledge Scale (PaCKS) scores (median 10 [IQR 5-12] vs. 7 [IQR 0-11], p<0.001), and lower scores on the Attitudes Towards Life-Sustaining Treatments Scale (indicating a more negative attitude towards life-sustaining treatments; median 23 [IQR 18-28] vs. 29 [IQR 24-35], p<0.001). Multivariable logistic regression identified age (OR 1.62 per 10 year increase, 95% CI 1.30-2.02; p<0.001), prior advance care planning discussion with a physician (OR 1.73, 95% CI 1.04-2.86; p = 0.034), PaCKS scores (OR 1.06 per 1 point increase, 95% CI 1.01-1.12; p = 0.018), and Attitudes Towards Life-Sustaining Treatments Scale scores (OR 0.91 per 1 point increase, 95% CI 0.88-0.95; p<0.001) as variables independently associated with ADs.ConclusionsAge, prior advance care planning discussion with a physician, palliative care knowledge, and attitudes towards life-sustaining treatments were independently associated with ADs.
| S-EPMC10581473 | biostudies-literature
Project description:Community-based healthcare delivery systems frequently lack cancer-specific survivorship support services. This leads to a burden of unmet needs that is magnified in rural areas. Using sequential mixed methods we assessed unmet needs among rural cancer survivors diagnosed between 2015 and 2021. The Supportive Care Needs Survey (SCNS) assessed 5 domains; Physical and Daily Living, Psychological, Support and Supportive Services, Sexual, and Health Information. Needs were analyzed across domains by cancer type. Survey respondents were recruited for qualitative interviews to identify care gaps. Three hundred and sixty two surveys were analyzed. Participants were 85% White (n = 349) 65% (n = 234) female and averaged 2.03 years beyond cancer diagnosis. Nearly half (49.5%) of respondents reported unmet needs, predominantly in physical, psychological, and health information domains. Needs differed by stage of disease. Eleven interviews identified care gap themes regarding; Finding Support and Supportive Services and Health Information regarding Care Delivery and Continuity of Care. Patients experience persistent unmet needs after a cancer diagnosis across multiple functional domains. Access to community-based support services and health information is lacking. Community based resources are needed to improve access to care for long-term cancer survivors.
| S-EPMC10949551 | biostudies-literature
Project description:Backgroundundertaking comprehensive geriatric assessments (CGAs) combined with long-term health and social care management can improve the quality of life of older people [ 1]. The EASY-Care tool is a CGA instrument designed for assessing the physical, mental and social functioning and unmet health and social needs of older people in community settings or primary care. It has also been used as a frailty assessment tool and for gathering population-level data.Objectiveto review the evidence of reliability, validity and acceptability of EASY-Care and its appropriateness for assessing the needs of community-dwelling older people.Methodssystematic search of literature databases using pre-defined search terms (January 1994-May 2014) for English language articles reporting on the reliability, validity, acceptability and implementation of EASY-Care in primary care and community settings. Eligible articles were critically reviewed. Discussion papers mapping professionals' use of the tool were also included as these could be considered an aspect of validity.Resultstwenty-nine papers met the inclusion criteria and underwent data extraction. A narrative synthesis was performed, because there was a variety of quantitative and qualitative outcomes and characteristics. Reliability evidence for EASY-Care is minimal. Evidence for validity is good, and it has received numerous positive endorsements of acceptability in international settings from older people and practitioners.Conclusionevidence supports the use of EASY-Care for individual needs assessment; further research is needed for other uses. Of the papers that made statements about who should administer EASY-Care, the majority indicated that nurses were preferable to self-completion.
| S-EPMC4476847 | biostudies-literature