What are the barriers and facilitators to physical activity in unpaid / informal carers in the UK

Horne, Joanna

Kentzer, Nichola

Smith, Lee

Trott, Mike

Vseteckova, Jitka

English

Horne, Jo

Open Research Online (The Open University)

Open Research OnlineThe Open University’s repository of research publicationsand other research outputsA systematic review on the barriers and facilitators tophysical activity in informal / unpaid carers in the UKOtherHow to cite:Horne, Jo; Vseteckova, Jitka; Smith, Lee; Trott, Mike and Kentzer, Nichola (2020). A systematic review onthe barriers and facilitators to physical activity in informal / unpaid carers in the UK. Prospero.For guidance on citations see FAQs.c© 2020 The AuthorsVersion: Version of RecordLink(s) to article on publisher’s website:https://www.crd.york.ac.uk/PROSPERO/display_record.php?RecordID=167742Copyright and Moral Rights for the articles on this site are retained by the individual authors and/or other copyrightowners. For more information on Open Research Online’s data policy on reuse of materials please consult the policiespage.oro.open.ac.ukPROSPEROInternational prospective register of systematic reviewsA systematic review on the barriers and facilitators to physical activity in informal / unpaidcarers in the UKJoanna Horne, Jitka Vseteckova, Lee Smith, Mike Trott, Nichola KentzerTo enable PROSPERO to focus on COVID-19 registrations during the 2020 pandemic, this registrationrecord was automatically published exactly as submitted. It has not been checked for eligibility or for senseby the PROSPERO team. CitationJoanna Horne, Jitka Vseteckova, Lee Smith, Mike Trott, Nichola Kentzer. A systematic review onthe barriers and facilitators to physical activity in informal / unpaid carers in the UK. PROSPERO2020 CRD42020167742 Available from: https://www.crd.york.ac.uk/prospero/display_record.php?ID=CRD42020167742 Review questionWhat are the barriers and facilitators to physical activity in unpaid / informal carers in the UK? SearchesArticles and reports related to the topic of physical activity of carers will be identified through searches usingelectronic databases. The purpose of the current systematic review is to synthesize all relevant availableknowledge. To provide a comprehensive overview of this research topic, all existing literature will beincluded, e.g. primary research studies, systematic reviews, meta-analyses, letters, guidelines, websites etc.The search will be limited to literature written in English and based on carers in the UK. No date restrictionswill be applied.The following electronic databases will be searched:1. PubMed 2. SPORTDiscus3. PsycINFO4. CINAHLAdditionally, grey literature will be searched in OpenGrey, Google and Google Scholar. In addition, referencelists of all relevant studies, reviews and reports will be searched.  Types of study to be includedThe search will include both quantitative and qualitative studies. There will be no restrictions on study design. Condition or domain being studiedPhysical activity of carers. Participants/populationEligible participants include:i) Carers for individuals suffering from any condition requiring careii) Carers must not be caring for the individual as part of their professional vocation i.e. they will be unpaidfamily members or friends                               Page: 1 / 5PROSPEROInternational prospective register of systematic reviewsiii) Carers can be from any age group (including ageing carers of 65+, working age carers aged 25-65, andyoung carers <25)iv) Carers must be based in the UK Intervention(s), exposure(s)Correlates of physical activity - all physical activity (both outside of their caring role and/or carried out as partof their caring role) will be included. Comparator(s)/controlNone. Context Main outcome(s)The primary outcomes of interest relate to the perceived barriers and facilitators to taking part in physicalactivity by unpaid carers within the UK. It is expected that outcomes will be diverse and context-specific,therefore it is not possible to produce an exhaustive list at the outset. However, examples of primaryoutcomes may include:• Perceived barriers to physical activity stated / selected by unpaid carers (e.g. lack of time, lack of availablerespite care, lack of energy, lack of suitable space, lack of money, medical conditions, lack of social support)• Perceived facilitators to physical activity stated / selected by unpaid carers (e.g. suitable respite care,support from family / friends, health concerns, nearby parks / trails).Physical activity has been shown to provide clear health benefits including reduced risk of cardiovasculardisease, certain cancers, stress and depression, and improved mental / cognitive health, wellbeing and sleep(Reiner et al., 2013; Warburton et al., 2006). Therefore, knowing the barriers and facilitators to physicalactivity for carers allows researchers to develop targeted interventions to improve the mental and physicalwellbeing of this specific population. Furthermore, physical activity per se is now recognised as a healthoutcome by major funding councils and government organisations. * Measures of effectNot applicable. Additional outcome(s)Secondary outcomes relate to the levels of barriers and facilitators to physical activity experienced by unpaidcarers in the UK. Again, these are expected to be context-specific, but secondary outcomes may include:• Experience of barriers (e.g. percentage of participants who perceive there to be barriers preventing themfrom undertaking physical activity)• Availability of support to engage in physical activity (e.g. percentage of participants who have experiencedsome support to engage in physical activity)* Measures of effectNot applicable. Data extraction (selection and coding)Study selection (both at title/abstract screening and full text screening) will be performed by two reviewers.Any disagreements will be solved by consensus or by the decision of a third reviewer where necessary. After                               Page: 2 / 5PROSPEROInternational prospective register of systematic reviewseliminating the duplicates, an initial screening of titles, abstracts, and summaries (if applicable) will beundertaken to exclude records that clearly do not meet the inclusion criteria. Each record will be classified as‘include’ or ‘exclude’ or ‘maybe’ with comments to identify relevant and exclude irrelevant literature. Theresearchers will be inclusive at this stage and, if uncertain about the relevance of a publication or report, itwill be left in. The full text will be obtained for all the records that potentially meet the inclusion criteria (basedon the title and abstract/summary only). In a second step, all the full text papers will be screened against theinclusion criteria, using a standardized tool. Studies that do not meet the inclusion criteria will be listed withthe reasons for exclusion. An adapted PRISMA flow-chart of study selection will be included in the review.At least two reviewers will independently extract data from each included study and insert this into the Excelspreadsheet. Disagreements between the reviewers will be resolved by discussion, or by a third reviewer.Study authors will be contacted to resolve any uncertainties. The extraction sheet will include authors, yearof study/report, aim/purpose, type of paper (e.g. journal article, annual evaluation report, etc), geographicalarea, study population (e.g. age of carers and condition of individuals being cared for), sample size, studydesign, and key findings that relate to the systematic review question. Two reviewers will independentlyextract data using a structured data extraction form. Disagreements between review authors will be resolvedby discussion or a third author. Risk of bias (quality) assessmentTwo reviewers will independently assess the risk of bias using the Cochrane risk of bias tool, which includesthe following domains: random sequence generation, allocation concealment, blinding of outcome assessors,completeness of outcome data, and selective outcome reporting. We also plan to assess the followingadditional sources of bias: baseline imbalance and inappropriate administration of an intervention asrecommended by the Cochrane Handbook for Systematic Reviews of Interventions. Studies will be judged athigh risk of bias if there was a high risk of bias for 1 or more key domains and at unclear risk of bias if theyhad an unclear risk of bias for at least 2 domains. Authors of papers will be contacted if information ismissing. Strategy for data synthesisFindings from included studies will be synthesized narratively. The ‘Guidance on the Conduct of NarrativeSynthesis in Systematic Reviews’ will advise the narrative synthesis. A preliminary synthesis will beconducted to develop an initial description of the findings and to organize them so that patterns acrossrecords can be identified. Thematic analysis will then be used to analyse the findings. The following fivesteps of thematic analysis will be followed adopting a recursive process:a) Familiarization with the extracted datab) Generation of initial codesc) Searching for themesd) Reviewing themese) Defining and naming themesDepending on the findings available, the reviewers will aim to provide a flow chart mapping the physicalactivity of carers. This review will highlight the current and desired levels of physical activity of carers, as wellas the need for more high-quality research in this field. The information presented in this review may beconsidered, in the future, by primary care providers and funding bodies when planning future support for thisgrowing population of carers.Meta-analysis will be conducted if data is found to be sufficiently homogeneous. We will decide if it isappropriate to pool our measures of effect by assessing if the included studies are similar enough (in termsof their population, intervention characteristics, and reported outcomes) to draw meaningful conclusions. If ameta-analysis of the included studies is indicated, we will assess statistical heterogeneity by visualinspection of the scatter of effect estimates in the forest plot and by calculating the I² statistic, after using theinverse variance method. In the case of a high degree of heterogeneity (I² greater than 50%), we will explore                               Page: 3 / 5PROSPEROInternational prospective register of systematic reviewspossible reasons for variability by conducting subgroup analysis. Where we detect substantial clinical,methodological or statistical heterogeneity across included studies, we will not report pooled results frommeta-analyses.  Analysis of subgroups or subsetsNone planned Contact details for further informationDr Joanna Hornejo.horne@open.ac.uk Organisational affiliation of the reviewThe Open Universitywww.open.ac.uk Review team members and their organisational affiliationsDr Joanna Horne. The Open UniversityDr Jitka Vseteckova. The Open UniversityDr Lee Smith. Anglia Ruskin UniversityMr Mike Trott. Anglia Ruskin UniversityDr Nichola Kentzer. The Open University Type and method of reviewNarrative synthesis, Systematic review Anticipated or actual start date02 March 2020 Anticipated completion date30 June 2020 Funding sources/sponsorsThe School of Education, Childhood, Youth and Sport and The School of Health, Wellbeing and Social Careat the Open University funded the time of academic staff to design and conduct this review. No otherexternal funding was received. Conflicts of interestNone known LanguageEnglish CountryEngland Stage of reviewReview Ongoing Subject index terms statusSubject indexing assigned by CRD Subject index termsCaregivers; Exercise; Humans; Social Support; United Kingdom Date of registration in PROSPERO28 April 2020 Date of publication of this version28 April 2020                                Page: 4 / 5PROSPEROInternational prospective register of systematic reviewsDetails of any existing review of the same topic by the same authors Stage of review at time of this submissionThe review has not started Stage Started CompletedPreliminary searches No NoPiloting of the study selection process No NoFormal screening of search results against eligibility criteria No NoData extraction No NoRisk of bias (quality) assessment No NoData analysis No NoThe record owner confirms that the information they have supplied for this submission is accurate andcomplete and they understand that deliberate provision of inaccurate information or omission of data may beconstrued as scientific misconduct.The record owner confirms that they will update the status of the review when it is completed and will addpublication details in due course. Versions28 April 2020 PROSPEROThis information has been provided by the named contact for this review. CRD has accepted this information in goodfaith and registered the review in PROSPERO. The registrant confirms that the information supplied for this submissionis accurate and complete. CRD bears no responsibility or liability for the content of this registration record, anyassociated files or external websites. Powered by TCPDF (www.tcpdf.org)                               Page: 5 / 5

A systematic review on the barriers and facilitators to physical activity in informal / unpaid carers in the UK

Open Research OnlineThe Open University’s repository of research publicationsand other research outputsA systematic review on the barriers and facilitators tophysical activity in informal / unpaid carers worldwideOtherHow to cite:Vseteckova, Jitka; Horne, Joanna; Smith, Lee; Trott, Mike and Kentzer, Nichola (2020). A systematic reviewon the barriers and facilitators to physical activity in informal / unpaid carers worldwide. Prospero - Internationalprospective register of systematic reviews, CRD42020184196.For guidance on citations see FAQs.c© [not recorded]Version: Version of RecordLink(s) to article on publisher’s website:https://www.crd.york.ac.uk/PROSPERO/display_record.php?RecordID=184196Copyright and Moral Rights for the articles on this site are retained by the individual authors and/or other copyrightowners. For more information on Open Research Online’s data policy on reuse of materials please consult the policiespage.oro.open.ac.ukPROSPEROInternational prospective register of systematic reviewsA systematic review on the barriers and facilitators to physical activity in informal / unpaidcarers worldwideJitka Vseteckova, Joanna Horne, Lee Smith, Mike Trott, Nichola Kentzer CitationJitka Vseteckova, Joanna Horne, Lee Smith, Mike Trott, Nichola Kentzer. A systematic review onthe barriers and facilitators to physical activity in informal / unpaid carers worldwide. PROSPERO2020 CRD42020184196 Available from: https://www.crd.york.ac.uk/prospero/display_record.php?ID=CRD42020184196 Review questionWhat are the barriers and facilitators to physical activity in unpaid / informal carers worldwide? SearchesThe search will include both quantitative and qualitative studies. There will be no restrictions on study designor date. Language will be limited to English only. The search strategy will be created by an expert insystematic review searching, in collaboration with the authors. A draft PubMed search is shown in the tablebelow. Once this strategy is finalised, it will be adapted to the syntax and subject headings of the otherdatabases.Draft PubMed search:Key words: (‘Carer’ OR ‘caregiver’ OR ‘family member’ OR ‘informal carer’) AND (‘physical activity’)Syntax: (carer[Title/Abstract] OR caregiver[Title/Abstract] OR family member[Title/Abstract] OR informalcarer[Title/Abstract]) AND (physical activity[Title/Abstract])The following electronic databases will be searched:1. PubMed 2. SPORTDiscus3. PsycINFO4. CINAHLAdditionally, grey literature will be searched in OpenGrey, Google and Google Scholar. The search term“physical activity of carers” will be used to identify grey literature because they were identified as the mostrelevant terms in the exploratory and database searches. In addition, reference lists of all relevant studies,reviews and reports will be searched.  Types of study to be includedArticles and reports related to the topic of physical activity of carers will be identified through searches usingelectronic databases. The purpose of the current systematic review is to synthesize all relevant availableknowledge. To provide a comprehensive overview of this research topic, all existing literature will beincluded, e.g. primary research studies, systematic reviews, meta-analyses, letters, guidelines, websites etc.The search will be limited to literature written in English and based on carers outside of the UK. No daterestrictions will be applied.                                Page: 1 / 5PROSPEROInternational prospective register of systematic reviewsCondition or domain being studiedThis review will focus on informal (unpaid carers). The New Policy Institute states that “Informal carersprovide care on an unpaid basis, often to family members… Formal care, in contrast, is provided in return forpayment” [1]. However, although frequently used, there are objections to the term ‘informal carers’ as “thecaring service provided by ‘informal’ carers is formal in everything but the receipt of pay, and many carersfeel that they have had little choice in taking on their role” (p. 1) and so the term ‘unpaid carer’ is often usedinstead [2]. This review will utilise both the terms ‘informal’ and ‘unpaid’ carer and will include anyone“who looks after a family member, partner or friend who needs help because of their illness, frailty, disability,a mental health problem or an addiction and cannot cope without their support. The care they give is unpaid”[3]. Participants/populationParticipants Eligible participants include:i) Carers for individuals suffering from any condition requiring careii) Carers must not be caring for the individual as part of their professional vocation i.e. they will be unpaidfamily members or friendsiii) Carers can be from any age group (including ageing carers of 65+, working age carers aged 25-65, andyoung carers <25)iv) Carers must be based outside of the UK Intervention(s), exposure(s)InterventionsCorrelates of physical activity - all physical activity (both outside of their caring role and/or carried out as partof their caring role) will be included. Comparator(s)/controlNot applicable Main outcome(s)The primary outcomes of interest are the barriers and facilitators to physical activity in unpaid / informalcarers for individuals with any condition requiring care. To be included in the review, records will be requiredto report at least one of the following outcome measures:1. Carers’ perception of barriers to them taking part in physical activity2. Carers’ perception of facilitators to them taking part in physical activityPhysical activity has been shown to provide clear health benefits including reduced risk of cardiovasculardisease, certain cancers, stress and depression, and improved mental / cognitive health, wellbeing and sleep(Reiner et al., 2013; Warburton et al., 2006). Therefore, knowing the barriers and facilitators to physicalactivity for carers allows researchers to develop targeted interventions to improve the mental and physicalwellbeing of this specific population. Furthermore, physical activity per se is now recognised as a healthoutcome by major funding councils and government organisations.* Measures of effectNot applicable Additional outcome(s)The primary outcomes of interest relate to the perceived barriers and facilitators to taking part in physicalactivity by unpaid carers outside of the UK. It is expected that outcomes will be diverse and context-specific,therefore it is not possible to produce an exhaustive list at the outset. However, examples of primary                               Page: 2 / 5PROSPEROInternational prospective register of systematic reviewsoutcomes may include:• Perceived barriers to physical activity stated / selected by unpaid carers (e.g. lack of time, lack of availablerespite care, lack of energy, lack of suitable space, lack of money, medical conditions, lack of social support)• Perceived facilitators to physical activity stated / selected by unpaid carers (e.g. suitable respite care,support from family / friends, health concerns, nearby parks / trails)Secondary outcomes relate to the levels of barriers and facilitators to physical activity experienced by unpaidcarers outside of the UK. Again, these are expected to be context-specific, but secondary outcomes mayinclude:• Experience of barriers (e.g. percentage of participants who perceive there to be barriers preventing themfrom undertaking physical activity)• Availability of support to engage in physical activity (e.g. percentage of participants who have experiencedsome support to engage in physical activity)* Measures of effectNot applicable Data extraction (selection and coding)After eliminating the duplicates (studies that are identified more than once by the search engines), an initialscreening of titles, abstracts, and summaries (if applicable) will be undertaken to exclude records that clearlydo not meet the inclusion criteria. Each record will be classified as ‘include’ or ‘exclude’ or ‘maybe’ withcomments to identify relevant and exclude irrelevant literature. The researchers will be inclusive at this stageand, if uncertain about the relevance of a publication or report, it will be left in. The full text will be obtainedfor all the records that potentially meet the inclusion criteria (based on the title and abstract/summary only).In a second step, all the full text papers will be screened against the inclusion criteria, using a standardizedtool. Studies that do not meet the inclusion criteria will be listed with the reasons for exclusion. An adaptedPRISMA (Preferred Reporting Items for Systematic Reviews and Meta-analyses) flow-chart of studyselection will be included in the review. A data extraction sheet will be developed which will be tailored to therequirements of the review. The data extraction sheet will be tested on three included papers and, wherenecessary, it will be revised to ensure it can be reliably interpreted and can capture all relevant data fromdifferent study designs. We plan to extract data on the participants, interventions, comparators, andoutcomes. In addition to that the extraction sheet will include authors, year of study/report, aim/purpose, typeof paper (e.g. journal article, annual evaluation report, etc), geographical area, study population (e.g. age ofcarers and condition of individuals being cared for), sample size, study design, and key findings that relate tothe systematic review question. Disagreements between review authors will be resolved by discussion or athird author. Risk of bias (quality) assessmentTwo reviewers will independently assess the risk of bias using the Cochrane risk of bias too, which includesthe following domains: random sequence generation, allocation concealment, blinding of outcome assessors,completeness of outcome data, and selective outcome reporting. We also plan to assess the followingadditional sources of bias: baseline imbalance and inappropriate administration of an intervention asrecommended by the Cochrane Handbook for Systematic Reviews of Interventions. Studies will be judged athigh risk of bias if there was a high risk of bias for 1 or more key domains and at unclear risk of bias if theyhad an unclear risk of bias for at least 2 domains. Authors of papers will be contacted if information ismissing. Strategy for data synthesisFindings from included studies will be synthesized narratively. The ‘Guidance on the Conduct of NarrativeSynthesis in Systematic Reviews’ will be used to advise the narrative synthesis. First, a preliminarysynthesis will be conducted to develop an initial description of the findings of included records and toorganize them so that patterns across records can be identified. In a second step, thematic analysis will beused to analyse the findings. The following five steps of thematic analysis will be followed adopting arecursive process:                               Page: 3 / 5PROSPEROInternational prospective register of systematic reviewsa) Familiarization with the extracted datab) Generation of initial codesc) Searching for themesd) Reviewing themese) Defining and naming themesDepending on the findings available, the reviewers will aim to provide a flow chart mapping the correlates ofphysical activity of unpaid carers. This review will highlight the barriers and facilitators to physical activityamongst unpaid carers, as well as the need for more high-quality research in this field. The informationpresented in this review may be considered, in the future, by primary care providers and funding bodieswhen planning future support for this growing population of carers.Meta-analysis will be conducted if data is found to be sufficiently homogeneous. We will decide if it isappropriate to pool our measures of effect by assessing if the included studies are similar enough (in termsof their population, intervention characteristics, and reported outcomes) to draw meaningful conclusions. Analysis of subgroups or subsetsNot applicable Contact details for further informationJitka Vseteckovajitka.vseteckova@open.ac.uk Organisational affiliation of the reviewThe Open university Review team members and their organisational affiliationsDr Jitka Vseteckova. The Open universityDr Joanna Horne. The Open UniversityDr Lee Smith. Anglia Ruskin UniversityMr Mike Trott. Anglia Ruskin UniversityDr Nichola Kentzer. The Open University Type and method of reviewNarrative synthesis, Systematic review Anticipated or actual start date01 April 2020 Anticipated completion date31 December 2021 Funding sources/sponsorsNot applicable Conflicts of interest LanguageEnglish CountryEngland Stage of reviewReview Ongoing                               Page: 4 / 5PROSPEROInternational prospective register of systematic reviews Subject index terms statusSubject indexing assigned by CRD Subject index termsCaregivers; Dementia; Exercise; Humans Date of registration in PROSPERO26 June 2020 Date of first submission04 May 2020 Stage of review at time of this submission Stage Started CompletedPreliminary searches Yes NoPiloting of the study selection process No NoFormal screening of search results against eligibility criteria No NoData extraction No NoRisk of bias (quality) assessment No NoData analysis No NoThe record owner confirms that the information they have supplied for this submission is accurate andcomplete and they understand that deliberate provision of inaccurate information or omission of data may beconstrued as scientific misconduct.The record owner confirms that they will update the status of the review when it is completed and will addpublication details in due course. Versions26 June 2020 PROSPEROThis information has been provided by the named contact for this review. CRD has accepted this information in goodfaith and registered the review in PROSPERO. The registrant confirms that the information supplied for this submissionis accurate and complete. CRD bears no responsibility or liability for the content of this registration record, anyassociated files or external websites.Powered by TCPDF (www.tcpdf.org)                               Page: 5 / 5

A systematic review on the barriers and facilitators to physical activity in informal / unpaid carers worldwide

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A systematic review on the barriers and facilitators to physical activity in informal / unpaid carers worldwide

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