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Abstract
Introduction Incidences of stroke are on the rise and approximately 80 million stroke survivors worldwide live with disabilities. Supportive care needs of stroke survivors are not adequately defined, and the assessment tools to help care service providers identify these needs are unclear. The overall aim of this scoping review will be to map the supportive care needs of stroke survivors against the Supportive Care Needs Framework.
Methods and analysis This scoping review will be conducted following Arksey and O’Malley’s methodological framework and Joanna Briggs Institute (JBI) updated methodological guidance for scoping review. This review will mainly use Arksey and O’Malley’s methodological framework as the basic framework. The review will also follow JBI’s updated methodological guidance for scoping reviews to optimise the review. For the search strategy, the three-step method recommended by the JBI will be used in the study. The review will be reported according to the Preferred Reporting Items for Systematic Reviews and Meta-Analysis extension for Scoping Reviews. Six English databases, including PubMed, CINAHL, Web of Science, Embase, Cochrane Library and PsycInfo, and four Chinese databases, including CNKI, Wanfang, VIP and China Biomedical Literature Database will be systematically searched from inception to the present. Studies published in English and Chinese will be included.
Ethics and dissemination Ethical approval is not required as this scoping review does not involve human participants. The findings shall be disseminated at scientific conferences and published in a peer-reviewed journal.
- Stroke
- Protocols & guidelines
- Quality in health care
- Aged
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STRENGTHS AND LIMITATIONS OF THIS STUDY
For this scoping review, a rigorous literature search strategy will be employed and the review report will follow the Preferred Reporting Items for Systematic Reviews and Meta-Analysis literature search extension.
The Joanna Briggs Institute Scope Review guidelines, updated in 2021, will be used in this scoping review as a methodological guidance framework and the review will be reported according to the Preferred Reporting Items for Systematic Reviews and Meta-Analysis extension for Scoping Reviews checklist. It can be replicated due to its clear methodological and transparent process.
In this scoping review, all cross-sectional and intervention studies will be considered in addition to the study protocol.
The effectiveness or the methodological quality of the included studies will not be reported.
In this review, only studies published in English or Chinese will be considered, and thus, potentially relevant papers could be missed.
Introduction
Stroke is the first leading cause of death and disability for adults in China.1 It is characterised by high morbidity, disability, mortality, recurrence and economic burden. Therefore, stroke has been recognised as an important problem threatening human health around the world, approximately 80 million stroke survivors worldwide live with disabilities.2 Analysis for the Global Burden of Disease Study 2019 demonstrated that the annual number of strokes and deaths due to stroke increased substantially from 1990 to 2019.3 Most stroke survivors are discharged from the hospital to the community with varying degrees of residual neurological deficits.2 3 It is essential to identify the supportive care needs (SCNs) and provide person-centred care for the rehabilitation and rebuilding of individuals with stroke.4 Previous studies have confirmed that stroke survivors live with a wide range of physical,3 psychological, emotional, practical issues,5 experience disease uncertainty6 and at a high risk of developing depression, especially in those who have poststroke aphasia.7 Unmet SCNs of patients who had a stroke will not only decrease their quality of life but also affect their health outcomes negatively.8
The needs of stroke survivors can be influenced by various sociocultural factors. Existing studies or reviews reported unmet care needs in stroke survivors from different countries.9–11 However, they did not synthesise all the needs met or unmet and did not map the needs based on the Supportive Care Needs Framework (SCNF) for this population. Moreover, fewer evidence-based tools were reported to assess the SCNs of stroke survivors. Some examples of evidence-based tools to measure care needs of stroke survivor are as follows: Longer-term Unmet Needs after Stroke,12 Greater Manchester Stroke Assessment Tool,13 Long-term Care Needs Questionnaire14 and Post Stroke Checklist.15 However, these tools, differ in domains and stroke stages, are not based on the foundations similar to SCNF focusing on holistic care needs of poststroke survivors. Such situations affect care service providers to identify and meet SCNs of poststroke survivors. It is essential to map the SCNs of stroke survivors based on the SCNF.
Supportive Care Needs Framework
The SCNF is used to guide data abstraction. It was originally developed to assess care needs for cancer survivors.16 17 The domains of needs include informational, emotional, psychosocial, physical, practical, social and spiritual needs (figures 1 and 2). The SCNF has been presented in various arenas, including but not limited to patients who had a stroke and their caregivers.18 We interpret the SCNF in the context of caring for stroke survivors as follows. Informational needs for stroke survivors are how to access the information on diagnosis, treatment and rehabilitation of diseases and how to handle the side effects. The emotional needs of stroke survivors are a sense of comfort, belonging and understanding when they are sad, anxious and stressed. Psychosocial needs are the needs related to the ability to cope with the illness experience and its consequences. Physical needs include, but not limited to, physical comfort and freedom. Practical needs are the direct assistance that can help them accomplish a task or activity. The definition of social needs are the needs related to family relationships, community acceptance and involvement in social relationships. Spiritual needs are related to the meaning and purpose of life and practicing religious beliefs. Effective supportive care programmes help healthcare providers assess patients’ needs, and require collaborative efforts of various disciplines with an integrated approach towards person-centred compassionate care.19 The SCNF will be used as an overall guide to identify the wide spectrum of needs of patients who had a stroke and to collect and analyse data.
Supportive Care Needs Framework.
Examples of needs of stroke survivors.
Methods and analysis
Review questions
The overall aim of this scoping review is to map the SCNs of stroke survivors against the SCNF. We state the review question as: What are SCNs of stroke survivors according to the SCNF? Are there needs that cannot be included in the SCNF? Under the overall aim, this scoping review will achieve the following five objectives:
To recognise and identify the definition of SCNs for patients who had a stroke.
To map the SCNs of patients who had a stroke to the SCNF.
To identify needs that do not fit within the seven domains of the SCNF.
To identify screening and assessment tools that have been used to measure SCNs among stroke survivor.
To identify the research gaps in this field.
Study design
This scoping review protocol have followed both the Preferred Reporting Items for Systematic Reviews and Meta-Analysis Protocols (PRISMA-P) checklist20 and the best guidance and checklist for the scoping review protocols which was developed by members of the Joanna Briggs Institute (JBI) Scoping Review Methodology Group.21 The scoping review will be conducted in accordance with both, Arksey and O’Malley’s methodological framework22 and the JBI’s updated methodological guidance for scoping reviews.23 The Preferred Reporting Items for Systematic Reviews and Meta-Analysis extension for Scoping Reviews (PRISMA-ScR) checklist24 will be followed to further improve scientific rigour (online supplemental appendix 1). This protocol has been registered through the Open Science Framework (https://osf.io/2zbpx). The data will be screened, selected and extracted by two researchers according to the established inclusion and exclusion criteria, independently, with a third reviewer available to resolve disagreements.
Supplemental material
Search strategy
A systematic search will be performed. The search strategy will use the three-step method recommended by the JBI.25 26 Six English databases such as PubMed, CINAHL, Web of Science, Embase, Cochrane Library, PsycInfo and four Chinese databases such as CNKI, Wanfang, VIP and China Biomedical Literature Database will be systematically searched from inception to the present. The keyword search terms containing both ‘stroke*’ and ‘supportive care needs’ (including all other related keyword subject terms and free text terms) will be used to identify the relevant studies (online supplemental appendix 2). First, a preliminary search on this topic was conducted in the databases of PubMed and CNKI. Then, a full final search strategy will be determined by analysing the title and abstract of the retrieved papers. The second search will be undertaken across all databases using all the identified keywords and index terms. In the last step, the reference lists of all included studies for this scoping review, forward citation and grey literatures will be screened to identify additional sources. The data will be screened, selected and extracted by two researchers, independently. The search process will be non-linear but iterative; the researchers will engage with each stage in a reflexive way, and if necessary, repeat the steps to ensure a comprehensive coverage of the literature.
Supplemental material
Eligibility criteria
Inclusion
Studies will be eligible if they are quantitative, qualitative, mixed-methods studies and dissertations, and if participants were aged 18 years or over with a stroke diagnosis.
Studies written in English and Chinese will be included.
Full-text conference proceedings will be included.
The search time limit for the database is from the creation of the database to 31 December 2022.
Exclusion
If the content of the article was not complete and the full text was not available.
If the article reported a study protocol.
Study screening
Following the search, all identified records will be uploaded on a reference management software named EndNote X9. Duplicate studies will be identified and removed. Next, two reviewers will independently screen the titles, abstracts and full texts, and review the studies for eligibility. Following the pilot test of three studies, researchers will first read the titles and abstracts to screen the studies, and then the full texts will be checked following the inclusion criteria by two researchers, independently. If disagreements regarding the inclusion of a study arise, the two review authors will make the decision together through discussion, or by inviting a third reviewer. Reference lists of included papers and relevant published reviews will be checked to identify potentially relevant articles. These additional articles will also be screened using the process described above. These results of the search process will be reported in the final scoping review and will be presented in a PRISMA flowchart.27
Data extraction
Following data screening, data extraction will be conducted by two reviewers using the data extraction tool developed by the protocol authors. A draft of the data extraction tool will be included, modified and revised as necessary during the data extraction process. We will use the supportive care framework and each category’s definition and its examples to analyse and present our findings. For example, the definition of Physical needs in Fitch’s framework (Fitch, 2008) is ‘Needs for physical comfort and freedom from pain, optimum nutrition, ability to carry out one’s usual day-to-day functions (ie, activities of daily living)’. The data extractions shall include the following: (1) author of the study, (2) year of publication, (3) country/region, (4) study object, (5) study method/design/sample size, (6) general condition of the patient, (7) research context and data analysis method, (8) assessment tools to identify support care needs, (9) SCNs, (10) areas of the SCNF and (11) influence factors that may influence SCNs (online supplemental appendix 3).
Supplemental material
Collating, summarising and reporting the results
The results will be reported in narrative form, and tables and figures will be used to synthesise the information, and organised according to the review questions outlined in the first stage. The definition of SCNs for stroke survivors in the included papers will be collated in tables. Then descriptive qualitative techniques (eg, comprehensive thematic synthesis) will be used to recognise, identify and summarise the comprehensive definition. The SCNs of stroke survivors from each paper will be collected following the SCNF and will be classified into the seven domains outlined in the SCNF. In this process, some needs may not be grouped into any domains; thus will be regarded as new discoveries. We will identify the gaps in this field through the literature review. We will also engage stakeholder in consultation in our review. Lastly, we will report our scoping review findings follow the PRISMA-ScR guidelines17 after the data are extracted, collated and summarised. The findings will be presented in a manner that aligns with the objective of the scoping review.
Patient and public involvement
Patients and/or the public were not involved in this study.
Ethics statements
Patient consent for publication
Acknowledgments
We would like to thank Editage (www.editage.cn) for English language editing.
References
Supplementary materials
Supplementary Data
This web only file has been produced by the BMJ Publishing Group from an electronic file supplied by the author(s) and has not been edited for content.
Footnotes
Contributors HZ and KX are joint first authors. HZ, KX and ST conceived the study protocol steps. HZ wrote the manuscript with support from ST. HZ and ST obtained funding. All authors (HZ, KX, JM, XZ, YS, DX, FY, YL and ST) reviewed several iterations of the manuscript and approved this manuscript’s final version.
Funding This work is supported by funds from the Philosophy and Social Science Planning Fund of Henan Province (grant number 2020BSH013), Soft Science Research Project of Xinxiang City (grant number RKX2021008), the Construction of Innovative Provinces in Hunan (grant number 2019SK2141) and the China Oceanwide Holding Group Project Fund (grant number H201910150780001).
Competing interests None declared.
Patient and public involvement Patients and/or the public were not involved in the design, or conduct, or reporting, or dissemination plans of this research.
Provenance and peer review Not commissioned; externally peer reviewed.
Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.