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The Unmet Needs of Community-Dwelling Stroke Survivors: A Systematic Review of Qualitative Studies.

ABSTRACT: 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.

SUBMITTER: Guo Y

PROVIDER: S-EPMC7926407 | biostudies-literature | 2021 Feb

REPOSITORIES: biostudies-literature

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The Unmet Needs of Community-Dwelling Stroke Survivors: A Systematic Review of Qualitative Studies.

Guo Yunfei Y Zhang Zhenxiang Z Lin Beilei B Mei Yongxia Y Liu Qingxuan Q Zhang Leyun L Wang Wenna W Li Yuan Y Fu Zhongrong Z

International journal of environmental research and public health 20210222 4

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 da ...[more]

PMID: 33671734

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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.

Project description:ObjectiveTo review and synthesise qualitative literature relating to the longer-term needs of community dwelling stroke survivors with communication difficulties including aphasia, dysarthria and apraxia of speech.DesignSystematic review and thematic synthesis.MethodWe included studies employing qualitative methodology which focused on the perceived or expressed needs, views or experiences of stroke survivors with communication difficulties in relation to the day-to-day management of their condition following hospital discharge. We searched MEDLINE, EMBASE, PsycINFO, CINAHL, The Cochrane Library, International Bibliography of the Social Sciences and AMED and undertook grey literature searches. Studies were assessed for methodological quality by two researchers independently and the findings were combined using thematic synthesis.ResultsThirty-two studies were included in the thematic synthesis. The synthesis reveals the ongoing difficulties stroke survivors can experience in coming to terms with the loss of communication and in adapting to life with a communication difficulty. While some were able to adjust, others struggled to maintain their social networks and to participate in activities which were meaningful to them. The challenges experienced by stroke survivors with communication difficulties persisted for many years poststroke. Four themes relating to longer-term need were developed: managing communication outside of the home, creating a meaningful role, creating or maintaining a support network and taking control and actively moving forward with life.ConclusionsUnderstanding the experiences of stroke survivors with communication difficulties is vital for ensuring that longer-term care is designed according to their needs. Wider psychosocial factors must be considered in the rehabilitation of people with poststroke communication difficulties. Self-management interventions may be appropriate to help this subgroup of stroke survivors manage their condition in the longer-term; however, such approaches must be designed to help survivors to manage the unique psychosocial consequences of poststroke communication difficulties.

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.

Project description:PurposeThe increasing recognition of the complex impacts of a cancer diagnosis and its treatment has led to efforts to develop instruments to reflect survivors' needs accurately. However, evidence regarding the content and quality of instruments used to evaluate the unmet needs of lymphoma survivors is lacking. This review aimed to evaluate the psychometric properties and comprehensiveness of available self-report instruments to assess unmet needs and quality of life with adult lymphoma survivors.MethodsA systematic search of five databases (CINAHL, EMBASE, Medline, PsycInfo and Scopus) was conducted to identify instruments measuring unmet needs or quality of life outcomes. Original articles reporting the instrument's validation or development via citation screening were retrieved and screened against eligibility criteria. An appraisal of the instrument's measurement properties was conducted, guided by the COSMIN methodology and reported in accordance with PRISMA guidelines. A content comparison using the Supportive Care in Cancer Framework was performed.ResultsTwelve instruments met the inclusion criteria; only one was explicitly developed for lymphoma (Functional Assessment of Cancer Therapy-Lymphoma). Four instruments focused on the construct of need, and eight focused on quality of life. The psychometric data in the published literature is not comprehensive; there is heterogeneity in their development, content and quality. No included instrument was examined for all COSMIN measurement properties, and methodological quality was variable; all instruments measured at least four domains of need. The emotional domain was reviewed by all instruments (n = 12), and the spiritual and informational domains received the least focus (n = 4 each).ConclusionThis review provides a platform for instrument comparison, with suggestions for important factors to consider in systematically selecting unmet needs and quality of life self-report measures for adult lymphoma survivors. Considering the various discrepancies and limitations of the available instruments, using more than one instrument is recommended. In selecting measurement instruments, researchers should consider research objectives, study design, psychometric properties and the pros and cons of using more than one measure. Evaluating the participant burden and feasibility of completing the selected instrument is important for lymphoma survivors, a group burdened by cancer-related fatigue and cognitive impairment.

Dataset Information

The Unmet Needs of Community-Dwelling Stroke Survivors: A Systematic Review of Qualitative Studies.

Publications

The Unmet Needs of Community-Dwelling Stroke Survivors: A Systematic Review of Qualitative Studies.

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