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      Does the carer support needs assessment tool cover the established support needs of carers of patients with chronic obstructive pulmonary disease? A systematic literature search and narrative review

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          Abstract

          Background:

          Informal carers play a key supportive role for patients with chronic obstructive pulmonary disease. However, caring can have a considerable impact on health and wellbeing. Carers may have unidentified support needs that could be a target for intervention. Literature on the support needs of informal carers has not been fully synthesised, and our knowledge of the comprehensiveness of the Carer Support Needs Assessment Tool for these individuals is limited.

          Aim:

          To explore whether the Carer Support Needs Assessment Tool covers the support needs of carers of patients with chronic obstructive pulmonary disease identified in published literature.

          Design:

          English language studies were identified against predetermined inclusion/exclusion criteria through database searching. Further studies were identified through searching reference lists and citations of included papers. Papers were critically appraised and data extracted and synthesised by two reviewers. Identified needs were mapped to Carer Support Needs Assessment Tool questions.

          Data sources:

          MEDLINE, CINAHL, EMBASE, CDSR, ASSIA, PsycINFO and Scopus databases (Jan 1997–Dec 2017).

          Results:

          Twenty-four studies were included. Results suggest that carers have support needs in a range of domains including physical, social, psychological and spiritual. Many of these needs are unmet. Particular areas of concern relate to prolonged social isolation, accessing services, emotional support and information needs. Findings also suggest amendment of the Carer Support Needs Assessment Tool may be required relating to difficulties within relationship management.

          Conclusion:

          Evidence suggests that carers of patients with chronic obstructive pulmonary disease would benefit from identification and response to their support needs by healthcare professionals but to enable this, the Carer Support Needs Assessment Tool requires an additional question. Future planned work will explore this with carers of patients with chronic obstructive pulmonary disease.

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          Most cited references51

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          Gray literature: An important resource in systematic reviews

          Systematic reviews aide the analysis and dissemination of evidence, using rigorous and transparent methods to generate empirically attained answers to focused research questions. Identifying all evidence relevant to the research questions is an essential component, and challenge, of systematic reviews. Gray literature, or evidence not published in commercial publications, can make important contributions to a systematic review. Gray literature can include academic papers, including theses and dissertations, research and committee reports, government reports, conference papers, and ongoing research, among others. It may provide data not found within commercially published literature, providing an important forum for disseminating studies with null or negative results that might not otherwise be disseminated. Gray literature may thusly reduce publication bias, increase reviews' comprehensiveness and timeliness, and foster a balanced picture of available evidence. Gray literature's diverse formats and audiences can present a significant challenge in a systematic search for evidence. However, the benefits of including gray literature may far outweigh the cost in time and resource needed to search for it, and it is important for it to be included in a systematic review or review of evidence. A carefully thought out gray literature search strategy may be an invaluable component of a systematic review. This narrative review provides guidance about the benefits of including gray literature in a systematic review, and sources for searching through gray literature. An illustrative example of a search for evidence within gray literature sources is presented to highlight the potential contributions of such a search to a systematic review. Benefits and challenges of gray literature search methods are discussed, and recommendations made.
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            Clinical trials: the challenge of recruitment and retention of participants.

            This article, based on the available literature, attempts to discuss the importance of recruitment and retention of research participants, the associated barriers and challenges, and various strategies to overcome these barriers. The inability to recruit and retain the required participants in a research project poses serious threats to both the internal and the external validity of a research study. Despite serious implications, the issues of recruitment and retention do not receive due attention in research and publications. Literature suggests a lack of coordinated efforts to collect information on the outcomes of recruitment experiences in clinical trials and population studies. Studies often mention the number of participants who refuse to participate; however, the majority of the studies often fail to mention the specific reasons insufficient recruitment or retention of the participants. A methodological paper. Various participant-, context-, environment- and research-related factors are examined that affect the phenomenon of recruitment and retention of the participants in a study. Delayed or inefficient recruitment also has financial and ethical implications. Although there are many pieces of information scattered throughout academic journals on recruitment and retention of participants in research, few authors have dealt with the issue holistically. It is imperative for researchers to understand the importance of recruitment and retention of research participants, the associated barriers and challenges, and various strategies to overcome these barriers. Appropriate recording and reporting of the problems faced while recruiting and retaining the participants in research studies can help not only in understating the challenge, but will also help in devising the strategies to overcome this problem. This article was an attempt to synthesise and review the available literature on recruitment and retention issues, which demand extensive theoretical and conceptual thinking as part of the research design. An understanding of the challenges and issues related to recruitment and retention can help researchers to think ahead about the strategies to overcome these issues and consequently save the time and energy of the participants, researchers and funding agencies.
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              A mismatch between population health literacy and the complexity of health information: an observational study.

              Low health literacy is associated with poorer health and higher mortality. Complex health materials are a barrier to health.
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                Author and article information

                Journal
                Palliat Med
                Palliat Med
                PMJ
                sppmj
                Palliative Medicine
                SAGE Publications (Sage UK: London, England )
                0269-2163
                1477-030X
                16 July 2020
                December 2020
                : 34
                : 10
                : 1305-1315
                Affiliations
                [1-0269216320939243]School of Health Sciences, University of East Anglia, Norwich, UK
                Author notes
                [*]Morag Farquhar, School of Health Sciences, University of East Anglia, Edith Cavell Building, Norwich Research Park, Norwich NR4 7TJ, UK. Email: M.Farquhar@ 123456uea.ac.uk
                Author information
                https://orcid.org/0000-0002-7559-5219
                https://orcid.org/0000-0001-7991-7679
                Article
                10.1177_0269216320939243
                10.1177/0269216320939243
                7543023
                32669040
                347b12f3-7f0f-44ef-950f-7bd58cbab8ff
                © The Author(s) 2020

                This article is distributed under the terms of the Creative Commons Attribution 4.0 License ( https://creativecommons.org/licenses/by/4.0/) which permits any use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access page ( https://us.sagepub.com/en-us/nam/open-access-at-sage).

                History
                Funding
                Funded by: Research Capability Funding from the Norfolk and Waveney CCGs, ;
                Funded by: National Institute for Health Research (NIHR) Applied Research Collaboration (ARC EoE) programme, ;
                Categories
                Review Articles
                Custom metadata
                ts1

                Anesthesiology & Pain management
                palliative care,caregivers,chronic obstructive pulmonary disease,systematic review

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