PROSPERO International prospective register of systematic reviews

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1 PROSPERO International prospective register of systematic reviews A qualitative systematic review of the barriers and facilitators to self-management of chronic obstructive pulmonary disease (COPD): views of patients, carers, family members, and healthcare professionals: protocol Sian Russell Citation Sian Russell. A qualitative systematic review of the barriers and facilitators to self-management of chronic obstructive pulmonary disease (COPD): views of patients, carers, family members, and healthcare professionals: protocol. PROSPERO 2016:CRD Available from Review question(s) The review objectives are: To identify relevant qualitative research that has explored the perspectives and attitudes regarding self-management by patients with a diagnosis of COPD. To identify relevant qualitative research that has explored the perspectives and attitudes of carers/family members with regards to supporting patients with COPD in the adherence to the self-management of their condition. To identify qualitative research that has explored the perspectives and attitudes of healthcare providers in understanding, initiating, and maintaining adherence to self-management. To utilise these data to identify, explore, and explain the potential barriers and facilitators to COPD self-management for both patients with a diagnosis of COPD and the HCPs involved in the care of COPD patients. Searches The search strategy was designed in collaboration with an experienced information specialist, who used thesaurus headings and keywords relating to the concepts below, and translated them as appropriate for each database. The following databases were searched: MEDLINE (Ovid); ASSIA (ProQuest); CINAHL (EBSCO); PsycInfo (Ovid); ISI Web of Knowledge. The search was restricted to peer reviewed articles published in English, including published PhD theses. Date limits: None. Date of search: Types of study to be included Inclusion: 1. Studies with at least some qualitative data collection (e.g focus groups, interviews, workshops, diaries), analysis, and reporting that includes data excerpts; 2. Exploratory studies. Exclusion: 1. Randomised controlled trials, quasi-experimental studies, trial evaluations; Page: 1 / 7

2 2. Articles with only quantitative data collection, analysis, and reporting; 3. Studies with insufficient reporting of qualitative data (e.g no data excerpts); 4. First person narratives or single case studies; 5. Systematic and other literature-based reviews; 6. Thought/theoretical studies. Condition or domain being studied Within the International Classification of Diseases (ICD), chronic obstructive pulmonary disease (COPD) represents an umbrella term encompassing chronic bronchitis, emphysema, and chronic airway obstruction. COPD is characterised by irreversible airflow limitation, symptoms of breathlessness, abnormally high sputum production, a chronic cough, and by episodes of acute deterioration or exacerbation. Exacerbations are a key cause of hospitalization for COPD patients. COPD symptoms can negatively impact upon individuals ability to engage in exercise and activities of daily living, can result in reduced quality of life, and is associated with depression and anxiety. Ultimately those living with COPD have a wide array of psychosocial and healthcare needs that require help and support from healthcare providers and beyond. As such the provision of self-management education and selfmanagement support are priorities within primary healthcare delivery. Equipping patients with self-management skills and healthcare professionals (HCP) with self-management support skills can improve health status and reduce hospital admission. However, the ability of patients and HCPs to engage in self-management and self-management support can be problematized by a variety of potential structural, cultural, and psychosocial factors. It is therefore important to gain an in-depth understanding of what can act as either a barrier or facilitator to COPD self-management. There is no single definition of self-management, however the definition below from Barlow provides a comprehensive outline; Self-management refers to the individual s ability to manage the symptoms, treatment, physical and psychosocial consequences and life style changes inherent in living with a chronic condition. Efficacious self-management encompasses ability to monitor one s condition and to effect the cognitive, behavioural and emotional responses necessary to maintain a satisfactory quality of life. Thus, a dynamic and continuous process of self-regulation is established [1] This definition will be used for the purposes of this review. References [1] Barlow, et al. (2002) Self-management approaches for people with chronic conditions: a review Patient Education and Counselling, 48:2, pp Participants/ population Inclusion: 1. Patients with a diagnosis of COPD; 2. Carers/family members of COPD patients; 3. HCPs of any profession (e.g. practice nurse, respiratory nurse, GP) who care for patients with COPD. Exclusion: 1. COPD patients with receiving palliative or end of life care; 2. Patient group encompassing various chronic conditions with no sub-group reporting of COPD patients; Page: 2 / 7

3 3. Patient groups that are a composite of COPD and asthma patients with no sub-group reporting of COPD patients; 4. COPD patients involved in a trial/evaluating a trial, or experimental study. This includes trial and evaluations of interventions that are now part of usual care but were novel at the time of publication. Intervention(s), exposure(s) Intervention and trial studies and evaluations will not be included in this review. Comparator(s)/ control Not applicable. Context As explained above COPD can result in exacerbation and hospitalisation. As such recruitment and data collection settings could be community or hospital based and thus there will be no restriction on setting. Outcome(s) Primary outcomes A synthesis of qualitative findings in relation to the barriers and facilitators to COPD self-management from the perspectives of patients with a diagnosis of COPD, their families/carers, and healthcare professionals involved in the care of COPD patients. The focus of this review is on barriers and facilitators to COPD self-management and as such outcomes concerning the lived experience of the condition that is not within the context of self-management will be excluded. There will be no restrictions on type of self-management advice received, if any, or time since self-management advice was received. However, trial and evaluation populations will be excluded from this review. As such there will be no effect measures concerning self-management interventions. Secondary outcomes Not applicable. Not applicable. Data extraction, (selection and coding) Two reviewers will select studies eligible for the review, and any discrepancies between the two reviewers will be resolved by a third reviewer. Data from the included papers will be extracted by two reviewers. Criteria for data extraction will include: 1. Author(s), publication year, period of data collection, and country where research took place; 2. Type of study (e.g. exploratory, evaluation); 3. Aims, objectives, and/or research questions; 4. Type of participants included (e.g. COPD patients, family/carers of COPD patients, healthcare practitioners); 5. Ethical standards/approval; 6. Theoretical background or grounding; 7. Definition or description of self-management provided by authors; 8. Recruitment context/methods of sampling; 9. Methods of recruitment of participants; Page: 3 / 7

4 10. In/exclusion criteria; 11. Date(s)/time period of data collection; 12. Data collection methods and process; 13. Topic guide (if provided); 14. Data analysis procedure; 15. Attempts to establish validity and/or reliability; 16. Demographics of participants recruited (e.g. age, gender); 17. Themes presented by authors; 18. Data excerpts; 19. References of interest; 20. Participant understanding of self-management (if identifiable); 21. Key discussion points presented by authors; 22. Policy implications presented by authors; 23. Study limitations; 24. Author identified barriers and facilitators to self-management (if identifiable); 25. Reviewer identified barriers and facilitators to self-management. Risk of bias (quality) assessment Papers will be appraised for quality, however, quality will not be a means of exclusion. Quality will be taken into account to avoid low quality papers holding unnecessary weight in the review findings/discussion. The abstracts of articles retrieved from the search will be reviewed by two reviewers independently and any discrepancies will be resolved by discussion with a third reviewer. The full articles retrieved will be appraised for quality and the data extracted by two reviewers. Again discrepancies will be resolved through discussion, or with a third reviewer. The data will be analysed by two reviewers independently and discussed with the wider review team. The tool being used had been adapted from a pre-existing tool used by Atkins et al. (2012) and influenced by the work of Noyes & Popay (2007) and Popay, Rodgers, & Williams (1998) which advocate appraising qualitative work on whether authors have provided provide rich data and on the extent to which findings offer thick or thin descriptions. This tool assesses papers on whether the following criteria are clear, apparent, justified and/or well explained and given an assessment of Very good, Good, or Limited : Aims and scope; Rigour in research conduct; Ethical dimensions; Study design; Analysis procedure; Page: 4 / 7

5 Depth, detail & richness of findings; Credibility/interpretation; Relevance and transferability of findings; Contribution to knowledge. References Atkins et al. (2012) Including mixed methods research in systematic reviews: Examples from qualitative syntheses in TB and malaria control BMC Medical Research Methodology 12:62 Noyes & Popay (2007) Directly observed therapy and tuberculosis: how can a systematic review of qualitative research contribute to improving services? A qualitative meta-synthesis. Journal Advanced Nursing 57(3): Popay, Rodgers, & Williams (1998) Rationale and standards for the systematic review of qualitative literature in health services research. Qualitative Health Research 8(3): Strategy for data synthesis Both the qualitative findings presented by authors and the qualitative data excerpts will be analysed in parallel. In similar vein to meta-ethnography themes presented by authors will be compared and contrasted, grouped, and translated into superordinate themes via an iterative process. The reviewers will return to the original themes presented within the articles to confirm the meanings of the original themes are maintained within the superordinate themes. The superordinate themes thus represent cumulative findings and is maintains a crucial aspect of qualitative work: meaning in context. The core concern of this review is to gain an in-depth understanding of the barriers and facilitators to COPD self-management and as such the themes presented by authors will, if possible, also be coded, grouped, and translated in terms of whether they represent barriers or facilitators. This will be done using a framework approach, assisted by the use of NVivo software. The data excerpts will be analysed thematically to explore the potential for further themes masked by the authors themes and overall study focus which is unlikely to be in full concordance with the concerns of this review. The findings of this secondary analysis will be compared and contrasted to the superordinate themes to assess whether any novel themes have been produced. Analysis of subgroups or subsets It is not possible to specify the groups in advance. Dissemination plans The findings will be reported within a relevant peer reviewed journal. Contact details for further information Sian Russell Newcastle University, Institute of Health and Society, Baddiley-Clark Building, Richardson Road, Newcastle upon Tyne NE2 4AX Page: 5 / 7

6 Organisational affiliation of the review Newcastle University Review team Dr Sian Russell, Collaborators Dr Dapo Ogunbayo, Newcastle University Dr James Newham, Newcastle University Professor Eileen Kaner, Newcastle University Dr Karen Heslop, Newcastle Upon Tyne NHS Foundation Trust Professor Barbara Hanretty, Newcastle University Dr Paul Netts, Newcastle and Gateshead Clinical Commissioning Group Ms Fiona Beyer, Newcastle University Anticipated or actual start date 01 February 2016 Anticipated completion date 08 July 2016 Funding sources/sponsors Newcastle and Gateshead Clinical Commissioning Group Conflicts of interest None known Language English Country England Subject index terms status Subject indexing assigned by CRD Subject index terms Attitude; Attitude of Health Personnel; Caregivers; Disease Management; Family; Health Knowledge, Attitudes, Practice; Health Personnel; Humans; Pulmonary Disease, Chronic Obstructive; Self Care Stage of review Completed but not published Date of registration in PROSPERO 15 June 2016 Date of publication of this revision 09 August 2017 Stage of review at time of this submission Started Completed Preliminary searches Yes Yes Piloting of the study selection process Yes Yes Page: 6 / 7

7 Powered by TCPDF ( Formal screening of search results against eligibility criteria Yes Yes Data extraction Yes Yes Risk of bias (quality) assessment Yes Yes Data analysis Yes Yes PROSPERO International prospective register of systematic reviews The information in this record has been provided by the named contact for this review. CRD has accepted this information in good faith and registered the review in PROSPERO. CRD bears no responsibility or liability for the content of this registration record, any associated files or external websites. Page: 7 / 7