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      ’Who Cares?' The experiences of caregivers of adults living with heart failure, chronic obstructive pulmonary disease and coronary artery disease: a mixed methods systematic review

      systematic-review

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          Abstract

          Objective

          To assess the experiences of unpaid caregivers providing care to people with heart failure (HF) or chronic obstructive pulmonary disease (COPD) or coronary artery disease (CAD).

          Design Mixed methods systematic review including qualitative and quantitative studies.

          Data sources Databases searched: Medline Ebsco, PsycInfo, CINAHL Plus with Full Text, Embase, Web of Science, Ethos: The British Library and ProQuest. Grey literature identified using: Global Dissertations and Theses and Applied Sciences Index and hand searches and citation checking of included references. Search time frame: 1 January 1990 to 30 August 2017.

          Eligibility criteria for selecting studies

          Inclusion was limited to English language studies in unpaid adult caregivers (>18 years), providing care for patients with HF, COPD or CAD. Studies that considered caregivers for any other diagnoses and studies undertaken in low-income and middle-income countries were excluded. Quality assessment of included studies was conducted by two authors.

          Data analysis/synthesis

          A results-based convergent synthesis was conducted.

          Results

          Searches returned 8026 titles and abstracts. 54 studies—21 qualitative, 32 quantitative and 1 mixed method were included. This totalled 26 453 caregivers who were primarily female (63%), with median age of 62 years. Narrative synthesis yielded six concepts related to caregiver experience: (1) mental health, (2) caregiver role, (3) lifestyle change, (4) support for caregivers, (5) knowledge and (6) relationships. There was a discordance between paradigms regarding emerging concepts. Four concepts emerged from qualitative papers which were not present in quantitative papers: (1) expert by experience, (2) vigilance, (3) shared care and (4) time.

          Conclusion

          Caregiving is life altering and complex with significant health implications. Health professionals should support caregivers who in turn can facilitate the recipient to manage their long-term condition. Further longitudinal research exploring the evolution of caregiver experiences over time of patients with chronic cardiopulmonary conditions is required.

          Trial registration number

          CRD42016053412

          Related collections

          Most cited references61

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          Preferred reporting items for systematic reviews and meta-analyses: the PRISMA statement.

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            Convergent and sequential synthesis designs: implications for conducting and reporting systematic reviews of qualitative and quantitative evidence

            Background Systematic reviews of qualitative and quantitative evidence can provide a rich understanding of complex phenomena. This type of review is increasingly popular, has been used to provide a landscape of existing knowledge, and addresses the types of questions not usually covered in reviews relying solely on either quantitative or qualitative evidence. Although several typologies of synthesis designs have been developed, none have been tested on a large sample of reviews. The aim of this review of reviews was to identify and develop a typology of synthesis designs and methods that have been used and to propose strategies for synthesizing qualitative and quantitative evidence. Methods A review of systematic reviews combining qualitative and quantitative evidence was performed. Six databases were searched from inception to December 2014. Reviews were included if they were systematic reviews combining qualitative and quantitative evidence. The included reviews were analyzed according to three concepts of synthesis processes: (a) synthesis methods, (b) sequence of data synthesis, and (c) integration of data and synthesis results. Results A total of 459 reviews were included. The analysis of this literature highlighted a lack of transparency in reporting how evidence was synthesized and a lack of consistency in the terminology used. Two main types of synthesis designs were identified: convergent and sequential synthesis designs. Within the convergent synthesis design, three subtypes were found: (a) data-based convergent synthesis design, where qualitative and quantitative evidence is analyzed together using the same synthesis method, (b) results-based convergent synthesis design, where qualitative and quantitative evidence is analyzed separately using different synthesis methods and results of both syntheses are integrated during a final synthesis, and (c) parallel-results convergent synthesis design consisting of independent syntheses of qualitative and quantitative evidence and an interpretation of the results in the discussion. Conclusions Performing systematic reviews of qualitative and quantitative evidence is challenging because of the multiple synthesis options. The findings provide guidance on how to combine qualitative and quantitative evidence. Also, recommendations are made to improve the conducting and reporting of this type of review.
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              Epidemiology of COPD.

              Chronic obstructive pulmonary disease (COPD) is responsible for early mortality, high death rates and significant cost to health systems. The projection for 2020 indicates that COPD will be the third leading cause of death worldwide (from sixth in 1990) and fifth leading cause of years lost through early mortality or handicap (disability-adjusted life years) (12th in 1990). Active smoking remains the main risk factor, but other factors are becoming better known, such as occupational factors, infections and the role of air pollution. Prevalence of COPD varies according to country, age and sex. This disease is also associated with significant comorbidities. COPD is a disorder that includes various phenotypes, the continuum of which remains under debate. The major challenge in the coming years will be to prevent onset of smoking along with early detection of the disease in the general population.
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                Author and article information

                Journal
                BMJ Open
                BMJ Open
                bmjopen
                bmjopen
                BMJ Open
                BMJ Publishing Group (BMA House, Tavistock Square, London, WC1H 9JR )
                2044-6055
                2018
                11 July 2018
                : 8
                : 7
                : e020927
                Affiliations
                [1 ] departmentEuropean Centre for Environment and Human Health , University of Exeter Medical School, Knowledge Spa, Royal Cornwall Hospital , Truro, UK
                [2 ] Royal Cornwall Hospitals NHS Trust, Research, Development and Innovation, F37, Knowledge Spa, Royal Cornwall Hospital, Truro, Cornwall & University of Exeter , Exeter, UK
                [3 ] University of Exeter Medical School , Exeter, UK
                Author notes
                [Correspondence to ] Miriam Catherine Noonan; mn354@ 123456exeter.ac.uk
                Author information
                http://orcid.org/0000-0003-1102-1600
                http://orcid.org/0000-0002-3342-1202
                Article
                bmjopen-2017-020927
                10.1136/bmjopen-2017-020927
                6082485
                29997137
                f1222c58-23e8-4140-bd36-feb6c6373991
                © Author(s) (or their employer(s)) 2018. Re-use permitted under CC BY. Published by BMJ.

                This is an open access article distributed in accordance with the Creative Commons Attribution 4.0 Unported (CC BY 4.0) license, which permits others to copy, redistribute, remix, transform and build upon this work for any purpose, provided the original work is properly cited, a link to the licence is given, and indication of whether changes were made. See: https://creativecommons.org/licenses/by/4.0/.

                History
                : 01 December 2017
                : 30 May 2018
                : 07 June 2018
                Funding
                Funded by: University of Exeter Postgraduate Studentship;
                Categories
                Patient-Centred Medicine
                Research
                1506
                1722
                Custom metadata
                unlocked

                Medicine
                caregivers,heart failure,coronary heart disease,chronic obstructive pulmonary disease,mixed methods systematic review

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