RecRuiting paRticipants foR adult social caRe studies

Recruiting participants for adult social carestudies: challenges and mitigating strategies

METHODS REVIEW

www.sscr.nihr.ac.uk

Eva Cyhlarova, Michael Clark and Martin Knapp

Care Policy and Evaluation Centre, LondonSchool of Economics and Political Science

about the authoRsdr eva cyhlarova is a research consultant within the Care Policy and EvaluationCentre at the London School of Economics and Political Science (LSE).

dr Michael clark is Research Programme Manager for the NIHR School for SocialCare Research based at the LSE.

professor Martin Knapp is Director for the NIHR School for Social Care Researchbased at the LSE, and Professorial Research Fellow within the Care Policy andEvaluation Centre at LSE.

RecRuiting paRticipants foR adult social caRe studies

acknowledgments

The authors would like to thank all interviewees who contributed to this review aswell as the NIHR SSCR reviewers who provided their comments on the report.

Key words

Social care, research, recruitment, research participation

disclaimer

The views expressed in this review are those of the authors and do not necessarilyrepresent the views of the National Institute for Health Research (NIHR) or theDepartment of Health and Social Care.

Copyright: NIHR School for Social Care Research, 2020

RecRuiting paRticipants foR adult social caRe studies

abstRactChallenges are often encountered in recruiting participants into adult social careresearch studies, while strategies to overcome them are not widely understood orshared.

This Methods Review aimed to describe the challenges in recruiting organisationsand individuals for adult social care research and identify possible strategies toaddress them.

In semi-structured interviews, 17 senior researchers in the social care field wereasked about their experiences of recruitment of research participants.

One of the main barriers to recruitment was variation among providerorganisations, so recruitment strategies needed to be adjusted for differentorganisations, many of which lacked capacity for research participation. The rapidlychanging nature of adult social care organisation and delivery in England alsomeans that recruitment strategies often need to be adapted while research is inprogress. Building partnerships between researchers and providers and offeringfinancial and other incentives were suggested as mitigating strategies. In recruitingindividuals, a lack of understanding of research benefit and organisations’gatekeeping arrangements were common difficulties. Interviewees suggested:raising public awareness of adult social care research; building relationships withuser/carer groups; using a variety of recruitment strategies and offering a range ofparticipation routes. Researchers and funding bodies should allow sufficient timeand resources to recruit representative samples. Researchers should sharerecruitment knowledge.

A limitation in this review is that the individuals who participated in the review maynot be representative of all adult social care researchers.

This review highlights opportunities for developing recruitment in adult social careresearch, such as improving recruitment and participation methods; investing inresearch support and research capacity and increasing public engagement withadult social care research.

RecRuiting paRticipants foR adult social caRe studies

RecoMMendations foR ReseaRch on adultsocial caRe pRactice

general

n Increase public engagement with adult social care research and awareness ofresearch benefits.

n Secure advanced consent for use of data from individuals using adult social careservices, and from current participants.

Research funders

n Invest in research capacity-building, including from professional groups.

n Support building networks and relationships to exchange knowledge (includeresearchers, practitioners, user/carer organisations and groups).

n Support partnerships with non-academic organisations, include holding budgets.

n Provide research support costs for adult social care organisations.

n Ensure adequate compensation for time provided by individuals/participants.

n Allow sufficient time allocation for planning/recruitment tasks.

n Ensure appropriate methods/measures are used and also tested.

n Ensure involvement is effective throughout projects.

Researchers

n Communicate research aims to emphasise their relevance to practice and toorganisations.

n Build relationships/partnerships with individuals, groups and organisations.

n Offer benefits to organisations for participation, including quick wins orfeedback early on, and tangible outcomes at project end (e.g.workshops/training), where appropriate.

n Involve people/organisations from the beginning and throughout projects andretain their engagement.

n Make is as easy as possible for volunteers to participate, offer different ways oftaking part.

n Allocate realistic timelines and resources to recruitment activities.

n Use a range of recruitment methods to overcome a range of biases of differentapproaches.

n Set realistic recruitment targets.

n Report recruitment issues (including reasons for non-participation) andstrategies to overcome them.

RecRuiting paRticipants foR adult social caRe studies

1. introduction 1

1.1 Literature review 1

2. Methods 3

2.1 Sample 3

2.2 Interviews 3

2.3 Ethical review 3

2.4 Procedure 3

2.5 Analysis 3

3. Results 3

3.1 Participants 3

3.2 Clusters 3

3.3 Recruitment of social care organisations 3

3.4 Recruitment of individuals to studies 6

3.5 Research funding bodies 9

3.6 Research governance and ethics 10

3.7 Research community 10

4. discussion 12

5. limitations 13

6. conclusions 14

References 14

contents

1. intRoductionSince the 1980s, local authorities (LAs) inEngland gradually moved from delivering mostof their adult social care services ‘in house’ tothe majority being provided by privatecompanies, charities or social enterprises. Morerecently, further changes in the organisation,delivery and funding of adult social care haveincluded the development of directpayments/personal budgets for eligible citizensand arrangements with the NHS to pool somebudgets, develop joint commissioning andintegrate some services. The Care Act 2014reorganised the overarching legal framework formuch of adult social care and introduced newresponsibilities for local authorities, includingthe prevention of need and of delay indeterioration. More recently, difficulties incontracting adult social care services (such aslocal commissioning not being in line with therising cost of service provision) have led to morethan half of private providers returning contractsto LAs because of funding pressures (SectorPulse Check 2019). These changes are takingplace in the context of a reduction of nearly50% in central government funding for LAssince 2010/11 (NOS 2018), while the NHS hashad the largest reduction in spending in itshistory (as a proportion of GDP; Appleby 2018).

Arguably, using robust research evidence toinform decisions about adult social care is morecrucial than ever given these reforms andmounting pressures facing the sector (Woolhamet al. 2016). However, adult social care researchhas been recognised as a sector in need ofgreater investment and capacity-building if it isto respond to the rising need for robust researchevidence to help improve policy, practice andoutcomes (Corbett et al., 2017, NIHR TraineesCoordinating Centre 2017, Knapp andRichardson 2012, Marsh and Fisher 2005). Forexample, it has been argued that adult socialwork needs to move to an approach moreengaged with, and grounded on, researchevidence (Croisdale-Appleby 2014). Over thelast decade, adult social care research hasbenefitted from some additional investment,most notably the establishment by the NationalInstitute for Health Research of the School forSocial Care Research (NIHR SSCR). Morerecently, NIHR has begun to move moreresources to support adult social care research.The regionally organised NIHR Research DesignServices have been developing theirunderstanding of the sector to supportresearchers to develop better grant and

fellowship applications. The Clinical ResearchNetwork (CRN1) now provides support to adultsocial care research, for example, withrecruitment to studies. The NIHR Academy hasbegun to support work to further developcapacity in research in the adult social caresector. Different funding streams of NIHR havealso begun to commission more research inadult social care. Other funders, such as theEconomic and Social Research Council of UKResearch and Innovation and some charitablefunders of research have also begun to takemore interest in supporting research in the field.

It is in this context of need for more high-qualityresearch, and low but growing investment andlevels of infrastructure support for research inadult social care, that we sought to identify thekey issues facing recruitment of participants intostudies in the sector. If the sector is to makeproductive use of the growing investment,researchers and aligned infrastructure need tomake evidence-informed decisions about whatworks for recruitment to studies, what we knowis of limited value, and what are the key issuesthat remain to be better understood andaddressed.

Our starting point was to examine the existingliterature concerning recruitment to adult socialcare studies in the UK as well as evidence onthe (much larger) healthcare research sector.Next, we interviewed a sample of seniorresearchers in adult social care to expand theknowledge gained from the literature, and tofind out their views on what works in researchrecruitment in the changing social carelandscape. We describe the recruitment issuesthat researchers found challenging and presentthe strategies they suggested for mitigatingthem.

1.1 literature review

We searched PubMed and PsychINFO forliterature on recruitment to social care research.We included papers on recruitment inhealthcare studies if they were relevant to adultsocial care, for example, studies reporting onrelationships with gatekeepers or collaborationswith partner organisations. We also conducted aGoogle Scholar search to find ‘grey’ literaturesuch as reports and policy papers. No

1 www.nihr.ac.uk/explore-nihr/support/clinical-research-network.htm

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geographical restriction was applied but onlyEnglish language publications since 2000 wereincluded.

Recruiting participants is a challenge in moststudies (e.g. Newington and Metcalfe 2014,Walters et al. 2017), but these difficulties areheightened in adult social care research andapply to individuals (e.g. service users, carers,care staff), care settings (e.g. home care and carehomes), private providers and LAs.

Recruiting specific groups of users, carers andprofessionals and developing recruitmentstrategies appropriate for the context of adultsocial care provision can be particularlychallenging (McAveavey and Das 2013). Forexample, difficulties recruiting participants fromdiverse backgrounds have been reported insocial work and population surveys (Rugkåsaand Canvin 2011).

Some groups have been consistentlyunderrepresented in adult social care research,such as people from black, Asian and minorityethnic (BAME) communities (McLean andCampbell 2003). It has been shown thatdifferent recruitment strategies attract differentcategories of participants (Rugkåsa and Canvin2011) and should be adapted to take account ofthe gender, ethnic and socioeconomiccharacteristics of the target groups (Renert et al.2013, Amador et al. 2006). It has also beenreported that study accessibility and recruiters’skills can have a greater impact on recruitmentand retention rates than the characteristics ordemographics of the target group (Feldman etal. 2008, Rugkåsa and Canvin 2011).

To ensure that participation is accessible to allpopulation groups, recruitment methods needto be flexible, multi-faceted and, wherenecessary, targeted towards under-representedgroups (Renert et al. 2013, Feldman et al. 2008).For example, social media may reach specificpopulation groups better than traditionalrecruitment methods (Kurtzke et al. 2013). Also,research registers where volunteers can indicatetheir interest in research participation have beenrecommended as a recruitment tool. Registershave been shown to provide good infrastructureand reduce recruitment barriers, such asgeographical distance, but their usefulnessdepends on their design and on-goingmaintenance (Krysinska et al. 2017).

Also, recruiters’ experience and relationshipswith gatekeepers and potential participants have

been shown to affect recruitment (e.g. Miller etal. 2003, Archibald and Munce 2015).Organisations’ gatekeepers have been shown tooften control access to a particular group,community or institution, and may eitherfacilitate or inhibit recruitment (Miller et al.2003, Namageyo-Funa et al. 2014).Gatekeepers can enhance researchers’ credibilityand some groups are more likely to participatewhen the study is accessed through trustedorganisations (Miller et al. 2003, Brett et al.2014).

Also, gatekeepers can influence individuals’decisions to participate. It has been suggestedthat developing collaborative relationships withpartner organisations, especially theirgatekeepers, may save research time andresources (McAveavey and Das 2013). Previoushealth studies proposed that partnerorganisations (such as providers) should beinvolved from a project’s planning stages tounderstand their recruitment role andresponsibilities (Miller et al. 2003), otherwiseresearchers must rely on staff availability andgoodwill.

Some studies reported providing financialincentives to healthcare organisations inexchange for their participation, or establishingreciprocal relationships, such as offering adviceor expertise in exchange for assistance (Rugkåsaand Canvin 2011). For example, someresearchers have sought additional funding tocover recruitment costs by increasing capacity ofhome care staff (Miller et al. 2003). However, itmay be difficult to quantify the staff time andresources required to support recruitment(Goodman et al. 2011).

Previous healthcare studies found thatresearchers have difficulties estimating theresources required for recruitment, asrecruitment challenges and the strategies usedto remedy those are often not reported(Rugkåsa and Canvin 2011, Archibald andMunce 2015). Consequently, researchers mayunderestimate the time and resources neededfor their empirical work, while overestimatingthe willingness of participants or the ability ofrecruiters (Gul et al. 2010, Archibald and Munce2015).

The aim of this review was to describerecruitment challenges in adult social careresearch and identify possible strategies toaddress them.

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2. Methods

2.1 sample

A total of 23 senior adult social care researcherswere identified as potential participants by theirexperience in the field (e.g. being principalinvestigators of medium- or large-scale studies)and by snowball sampling.

2.2 interviews

A semi-structured interview schedule wasdeveloped, based on our literature review andconsultation with experts in adult social careresearch. Interviewees were asked aboutrecruitment of organisations, such as localauthorities and private or voluntary serviceproviders; care settings, such as residential orcommunity care; and individuals, such as peoplewho use social care services, carers, paid carestaff and managers of organisations or caresettings. Interviewees’ experiences ofrecruitment planning, methodologies, measures,and user/carer involvement were also explored.They were asked about any strategies they hadused or would recommend, to improve thenumber and representativeness of participants.

2.3 ethical review

The review underwent ethics review in keepingwith the London School of Economic andPolitical Science’s Research Ethics Policy andProcedures.

2.4 procedure

Potential participants were contacted by emailand invited to participate in telephoneinterviews. If they agreed, an interview wasarranged.

All interviewees provided consent by email.Electronic notes were taken during theinterviews and, immediately afterwards, typedinto a detailed record of each interview.

2.5 analysis

Interview data were coded and categorised, andan initial analysis framework was developed bythe interviewer (EC). Additional categories werecreated as new topics emerged. The data wereanalysed using the revised framework and anynew topics were noted.

3. Results

3.1 participants

Of the 23 researchers contacted, 17 agreed tobe interviewed after email contact. By theseventeenth interview, no new information wasbeing generated and therefore no furtherinterviews were pursued (Saunders et al. 2018).

The interviewees were employed by eightresearch institutions in England (16 were fromseven universities and one from a social careimprovement agency); eight were professors orequivalent grade (of those, four were directorsof research units); 11 were women.

3.2 clusters

The results are organised by the clusters ofchallenges raised by interviewees, along withtheir suggested strategies for overcoming them.

Inevitably, some themes span more than onecluster. The clusters are as follows: recruitmentof social care organisations; approaches torecruiting individuals; the influence of fundingbodies; the impact of research governance andethical review; and the role of the researchcommunity.

3.3 Recruitment of social careorganisations

For the purposes of this review, adult social careorganisations include LAs, as providers and/orcommissioners of services; and privatecompanies, voluntary sector providers or socialenterprises contracted by LAs to provideservices.

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challenges to recruitment to studies

n Variation in social care provision, funding andgovernance – Most interviewees noted that theshifting landscape of adult social careorganisation and funding presented a challengefor researchers. Some pointed out thatproviders’ funding was less secure thanpreviously, and services were often undergoinga reorganisation or suffering high staff turnover.Consequently, it was difficult to developconstructive relationships with staff as potentialgatekeepers or participants.

Fluctuations in the use of private and voluntarysector providers versus LA provision meant thatresearchers often had to adapt their projectsand recruitment strategies while in progress,particularly for those projects covering longerperiods.

It is often hard to find out who we shouldbe speaking to, the titles changes, churn isbig in LAs. You thought you had someoneand then they change.

n Variation among social care providers –Variation in LA processes and hierarchies maderecruitment complicated. The widespread use ofprivate providers meant wide variations in theways that providers collect and manage data, soeach participating organisation may require abespoke approach to sampling and contactingpotential participants.

n lack of dedicated research funding – Nineinterviewees said that most organisations didnot have a budget or staff support to helprecruit participants, and that they did notreceive such funding from funding bodies ofeither services or research.

[It would help] if there was this support cost- both the financial compensation and theacceptance that research is legitimateactivity for them to be involved in.

n lack of capacity for research – In some LAs,the teams who might collaborate in researchmay also be responsible for dealing with crises(for example, linked to failing private providers),and understandably they may not prioritiseresearch when these crises arise. Smallorganisations were thought less likely to havethe capacity to participate and the poorestservices were seen as much less likely to engage

in research. This can affect therepresentativeness of organisational samples.

A lot of providers are having crises; thereisn’t enough supply in the market for the LAto say OK, collapse. The entire contractteam ends up sucked into dealing with theproviders. It can be managed in a big LA,but in small ones it is a disaster. It affectshow representative our sample is. We mayend up losing them anyway as they can’t doit in the timescale.

Four interviewees pointed out that individualsmay be willing but not able to help. For example,numbers of eligible service users may not be ashigh as envisaged, or they may not be able togain the co-operation of others within theirorganisation.

In addition, private and charitable providers arenot usually contractually obliged to participate inresearch. This is in contrast to health research,where organisations are more likely to havecontractual requirements to support research,financial incentives to do so, and existingstructures and policies to facilitate researchparticipation.

Nine interviewees commented on differencesbetween health research and adult social careresearch. For example, variations in the wayadult social care support is organised anddelivered were perceived to make recruitmentmore expensive than in some health careresearch.

If you have a team in hospital, they are usedto gaining access, they can do it well, butthe model doesn’t transfer that well tosocial care settings. In a hospital outpatientclinic, you can hang out as a researcher, butyou can’t do that in social care, you have goout to each person.”

There isn’t a mechanism that would just runsmoothly; you always have to push [in adultsocial care research].

There has been less investment in routine datacollection in adult social care compared to theNHS, and researchers thought that availabledata in adult social care were poor quality interms of facilitating recruitment, and for otheranalyses.

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n perceived lack of benefit for organisations –Almost all interviewees thought that one keybarrier to recruiting organisations was that bothLAs and providers did not believe that theywould benefit from participating in research.Interviewees felt that, often, research was notperceived as a legitimate use of time or apriority in LAs. Interviewees thought thatsuccessful recruitment often depended onindividuals’ willingness to help.

n perceived risk to reputation or funding – Sixinterviewees mentioned that organisations werereluctant to participate if they perceived a riskthat the research would highlight poorstandards. Both LAs and providers may, forexample, have concerns about cost comparisonswith other services, or not want to supportresearch that could identify or promote cheaperways of service delivery. LAs were perceived asoften not motivated or wanting to share datawith researchers due to concerns aboutreputation.

strategies

n Research time allocation – Ten intervieweesrecommended that researchers should allocatesufficient time in their plans to allow them toadjust and negotiate recruitment strategies, andto accommodate any changes in care provisionduring a research project. They also emphasisedthe need to include the time taken to:

• identify the sample/data source; identifyaccess to the sample/the owners of thedata;

• make contact with gatekeepers/individualswho control the data;

• build a relationship to gain their trust andprovide them with the information theywould need to feel confident to promote orrecruit to the research/to supply the data;

• ensure compliance with the Data ProtectionAct 2018 (Great Britain 2018);

• deal with any queries about the way the dataare collected; supply the collaborators withany reports/feedback that were offered aspart of the agreement.

The interviewees’ experiences suggested thatthese processes may take many months.

n financial incentives for social careorganisations – Eight interviewees thought thatfinancial incentives would be useful for engagingorganisations, not only to reimburse their costs,

but also to acknowledge their contribution. Itwas strongly suggested that payments should beoffered to referrers (e.g. service providers), as isthe case in NHS trusts, who get accruals forcompleted consents or interviews. However,one interviewee thought that current funding inadult social care research would not stretch tosuch incentives.

n non-financial incentives – Interviewees alsosuggested that researchers could encourageorganisations to participate in research byensuring that their research is relevant to carepractice. Other suggestions includedestablishing reciprocal relationships, quickfeedback during projects, and tangible outcomesat the end of projects, such as workshops ortraining. Ensuring that participation is not tooonerous was seen as a deciding factor inorganisations’ participation.

n contractual arrangements – Twointerviewees said that research would benefit ifLAs’ contracts with providers included arequirement that, under agreed conditions, theyco-operate with research projects and facilitateresearch, e.g. by providing timely and accuratedata for research purposes.

n building relationships – Most intervieweesthought that every opportunity should be usedto build relationships with all potentially usefulcontacts and organisations, as this could pavethe way to successful collaborations later on.Working reciprocally with LAs was seen as a wayof maintaining relationships.

Face-to-face contact as much you can withthe people who you need to do therecruitment or with gatekeepers. If you takethe time to go out and see them, youincrease that network, it shows that it isimportant to you, that can be a big change;it makes a difference.

[You have] got to do it in advance, the moreyou can do, the more successful you are.You get buy-in at the early stage. The oldway to scramble around for a partner, it ishit and miss.

n flexibility – Eight interviewees emphasisedthe importance of flexibility and creativity inrecruitment as important strategies formanaging uncertainty in adult social careresearch.

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3.4 Recruitment of individuals to studies

challenges

n limited public engagement with social careresearch – Several interviewees thought thatthe benefits of adult social care research werenot obvious to most potential participants. Inaddition, some commented that some care usershad research fatigue or were not keen toparticipate, especially if they had had a poorexperience of care.

n participant diversity – Securing participantdiversity and sample representativeness werenoted as challenges. Interviewees thought thatthe majority of participants were middle class,white British, English-speaking, while very fewwere from BAME groups (unless they were thespecific target group). Current recruitmentstrategies to include BAME participants werethought to be ineffective, resulting in skewedsamples.

We had information sheets in variouslanguages, a phone line translating service,and still we didn’t recruit anybody who wasnot English-speaking.

n gatekeepers – In general, having to rely on athird party for recruitment was seen as a studycomplication. Gatekeepers were experienced asgenerally hindering access to potentialparticipants in adult social care studies, creatinga recruitment bias.

You can get gatekeeping in a residentialsetting, not having a direct contact: [Peoplethink] “they may not tell a good story aboutus.”

Some care practitioners were reported asscreening out potential participants. Forexample, people with dementia or learningdisabilities might be excluded by gatekeepers.

Recruiting practitioners screen people out,[they] give us people with good capacity,more recently referred, with less needs,even if we offer to check capacity on theday of the interview.

The service manager at social services said,“I’m not sure I am happy that you are goingout interviewing this person with dementia.You might upset them, they don’t havecapacity”.

n few structures for user/carer involvement –Public involvement in research has been definedas research being carried out ‘with’ or ‘by’members of the public rather than ‘to’, ‘about’ or‘for’ them (INVOLVE 2019). Involvement ofpeople with lived experience of social careneeds or as a carer was seen by somerespondents as less established in adult socialcare than in some health research, although thatwould not be a universal view. Eightinterviewees said that user/carer involvementwas too limited or tokenistic, often comprisingonly reading materials or attending a meeting.

We try hard to [include service users] in thebeginning, but some of it happens too late.Depending on funding, they make you domore of that. [Universities] don’t alwaysmake people [involve service users], theyare keen to get started.

However, it should be noted that interviewing adifferent group of respondents might haveresulted in a different experience of involvementin research, as some researchers ensureextensive and meaningful involvement in theirstudies.

n Recruitment networks and research registers– Eight interviewees mentioned recruitmentnetworks and research registers of peopleinterested in participating in social care research,but they expressed concerns about biases in thegroup of people who sign up. It was advised byinterviewees that registers should be usedalongside other recruitment methods.

Mixed experiences were reported with the JoinDementia Research (JDR2) register; some foundit helpful, others did not recruit the desiredparticipants.

I used JDR. I think it is a fantastic idea, butthe quality depends on the currency of theinformation it holds.

2 www.joindementiaresearch.nihr.ac.uk/

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Only two researchers expressed views about theEnabling Research In Care Homes (ENRICH3)network, which is designed to link researcherswith care homes that are said to be ready tohost research. They did not find the networkhelpful, as some of ENRICH’s care homes werenot prepared to participate in research.

Similarly, only four interviewees discussed theCRN, which was said to be “not working in someplaces”, “not understanding non-NHS research”or “getting in the way”. One interviewee thoughtthat CRNs were helping. As noted above, theCRN is a diverse ‘network of local networks’ andhas only recently started supporting adult socialcare research, whilst some of these commentsfrom researchers reflected experience from alonger period.

strategies

n Raising public understanding of social careresearch – Interviewees suggested that raisingawareness of the benefits of adult social careresearch and publicising its potential impactcould attract participants. Learning about themotivations of individuals and organisations toparticipate could help to overcome somebarriers to participation.

n using various strategies to reach potentialparticipants – Researchers stressed theimportance of using a range of recruitmentstrategies and offering different ways toparticipate. For example, using social media toavoid pre-selection by gatekeepers wasrecommended where appropriate and subject toappropriate ethical approval.

A family member told us to advertise onsocial media, because [the organisationthrough which they received care] mightcherry-pick who they told about theresearch.

In addition to face-to-face contact, conductingresearch via telephone, text messaging or Skypewere seen as important for broadeningparticipation.

n financial compensation for participants –Offering payments to individuals ascompensation for their time, cost and travel wasfelt to be essential for recruitment ofrepresentative samples. Payments toorganisations to incentivise them to release staff

for research participation were also suggested,or payments directly to staff so that they couldparticipate outside of working hours.

n inclusion of user/carer organisations –Including user/carer organisations as activecollaborators or research leads was thought tobe one way of improving recruitment. Twointerviewees said that the inclusion of userorganisations gave them credibility with thetarget group. However, it also involved passingsome of the control over the project to theorganisation, and some researchers found thisdifficult.

Working with user organisations can help. Inone case, we recruited via their Facebookpage, although I wasn’t allowed to join theFacebook group. The group gauged interest,then people were sent my email address, ortheir contact details were passed on to me.It was a very effective way. Some peoplesaid they were more likely to take part[because the first approach was from theuser group].

Interviewees thought that involving users, carersand practitioners in projects from the earlyplanning stages helped with recruitment.

I have contacts in a few ADASS [Associationof Directors of Adult Social Services]regional groups. I can attend their meetings.They will send out information to people foryou. I found them useful for recruitment.

Two interviewees thought that users’ and carers’capacity for involvement needed to bedeveloped, and that more options for people toinfluence adult social care research should be onoffer.

[Researchers should] have users or carersleading research. There may be difficultiesabout where funders allow money to beheld, but [we should] find ways of a farmore influential role [for users and carers],for example, setting research questions,controlling the study more.

n improving research registers – Researchregisters were perceived as potentially veryhelpful, especially for accessing some groups(e.g. self-funders). However, it was emphasisedthat they needed continuous development.

3 https://enrich.nihr.ac.uk/

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n advanced consent – Three intervieweesproposed securing advanced consent frompotential participants, making future recruitmenteasier. Researchers could ask participants incurrent projects if they would consent to beingcontacted about future research.

One interviewee suggested that everyoneentering the (state-funded) care system could beasked about the use of their data for research;this would increase data availability and accessto participants.

Currently, if people sign up to one study,they cannot [automatically] be approachedfor another. It is a GDPR [General DataProtection Regulation] problem, I don’t thinkservice users have a problem with that, tobe approached again.

n collaborations with health organisations –Three interviewees recommended collaborationwith NHS trusts, as some have lists ofparticipants from previous studies who hadconsented to be contacted about futureresearch.

populations harder to engage in research

Interviewees found it particularly difficult torecruit participants from some populations. Thechallenges and suggested strategies forovercoming barriers to recruitment varyaccording to the population group (Table 1).

It was thought some groups will remainchallenging to recruit, for example, people withwhat were described as ‘chaotic’ lives, peoplewith dementia who have no carers, or peopleunknown to adult social care. No specificstrategies were suggested for improvingrecruitment of people in these groups.

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table 1. specific groups reported as difficult to recruit

Population group Challenges and barriers Strategies and mitigating actions

Service user groups

People who may lack mentalcapacity

Mental capacity issues may impacton their ability to provide informedconsent. Gatekeepers may beconcerned about the wellbeing ofparticipants.

Adjust the consent process to facilitatethose with capacity issues to provideinformed consent. Provide easy-readmaterials. Use proxy consenters.

Build rapport and trust withgatekeepers; demonstrate training inseeking informed consent from peoplewith capacity issues.

Residents in care homes Residents can be frail and oftenhave dementia or are physicallyunwell.

Personal budgets/Directpayments (PB/DP) recipients

LA lists may not be accurate; somePB/DP recipients do not use socialcare services, so cannot berecruited via those.

Recruit through local organisations (i.e.services for people with PB/DP or homecare agencies) and community groups.

Self-funders There are no central registers orlists of people who privately fundtheir own social care.

Unpaid carer groups

Family carers, dementiacarers

Carers are often struggling andexhausted, although they are keento give their views.

Offer flexible times, including eveningsand weekends, and a variety ofmethods, such as telephone, textmessaging and email.

Offer incentives and provide substitutecare (or childcare) during participation.

Young carers Young carers often have multipleissues to manage which canchange frequently.

3.5 Research funding bodies

challenges

n focus on research impact – Someinterviewees expressed frustration about whatthey saw as research funders’ unrealistically highexpectations of what researchers could do interms of recruitment with limited resources andcapacity. One felt that there was too muchfocus on research impact, which may not alwaysbe possible to demonstrate, although the sameperson thought there was a reason to bepositive about the landscape of funding foradult social care research.

[social care researchers] like to go on abouthow bad it is, but we have never had it sogood.

n lack of long-term planning – Manyresearchers in adult social care have fixed-termcontracts focused on current projects andtherefore cannot dedicate sufficient time toplanning and preparing future projects.

n contrast with health research – Oneinterviewee highlighted the contrast betweenadult social care and some healthcare, andthought that research funding bodies shouldtake account of the extra challenges in theformer.

It works in [NHS] hospitals as they aredrawing money, but not in social care. It’smore complicated [in social care] than inhealth; it’s not as clear-cut to rewardorganisations for helping recruit for a study.NIHR need to think about that, not just takethe model from health.

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table 1. specific groups reported as difficult to recruit (continued)

Population group Challenges and barriers Strategies and mitigating actions

Social care professionals

Formal paid carers Paid carers’ time is largely directedby their employers. They may haveconcerns about their work beingcriticised.

Offer flexible times and a variety ofmethods, such as telephone, textmessaging and email.

Offer incentives.

Build rapport and trust withgatekeepers.

Find ways of making staff comfortableto speak openly.

Care home workers Care home workers may be toobusy. Their responses areinfluenced by concerns about theiremployers’ approval.

Home care workers They are not accessible at theirplace of work (they have justoffices).

Offer flexible times and a variety ofmethods, such as telephone, textmessaging and email.

Offer incentives.

Recruit through their employers (i.e.home care agencies or the disabledpeople they care for).

Personal assistants (PAs) fordisabled people who work

There is no professionalorganisation for PAs and they areindividually employed by theirclients.

LA workers, social workers Willingness to participate dependson how busy they are and whetherthey consider research important.

Raise awareness of research benefit.

Offer incentives.

Offer flexible times and a variety ofmethods, such as telephone, textmessaging and email.

strategies

n increasing research capacity – Someinterviewees thought that funders couldstimulate social care research by focussing onincreasing capacity, for example, by fundingmore PhDs or incentivising professional groupsto be involved in research.

n understand need for recruitment time –Interviewees suggested that funders shouldrecognise the need to allocate sufficient fundingand time for recruitment of research partnersand participants.

My message to funders is: in some studies,researchers are asked to cut the preparationtime, but they take longer than you expect.[Funders] need to accept it and allow ifresearchers need longer time, not to ask tocut it.

n funding for organisations – Support andfunding for user/carer groups or organisationsand providers to undertake research wouldfacilitate user and carer involvement and reachplaces researchers find difficult to access orseldom-heard groups.

[Funding bodies should] financially supportplaces, compensate places for helping toidentify people, approaching people. UntilLAs receive funding that is on the par withthe NHS research, we will always try to doresearch with one hand tied.

n financial incentives for individuals – It wassuggested that individuals should be offeredcompensation for participation.

3.6 Research governance and ethics

challenges

Several interviewees mentioned difficulties withresearch governance and ethics, potentiallycontributing to recruitment delays.

n delays in securing approvals – Approvalsfrom the Association of Directors of Adult SocialServices (ADASS) were perceived as taking toolong and the variation among LAs in researchapproval times hindered recruitment progress.The national, Health Research AuthorityResearch Ethics Committee approval process

was also perceived as inefficient by fourinterviewees.

n burdens imposed by ethical review – Seveninterviewees perceived ethical review processesto be putting excessive burdens on researchers,or promoting gatekeepers’ restrictions on accessto participants, thereby making recruitmentmore difficult.

Ethics can make it difficult as well. Theyinsist on gatekeepers that can make orbreak the study. If they insist, you have togo through someone who is not on board[with the research].

n unclear review policies – Some intervieweesmentioned occasions when organisations wereafraid to make decisions and did not haveguidance about who could provide assurance oncorrect procedures for sharing data.

There are huge difficulties recruiting in carehomes: they are subject to a lot of scrutinythrough regulation. Managers don’t feelempowered to make that decision anddidn’t know how to find out.

In addition, concerns about data protectionmade LAs excessively risk-averse aboutapproaching potential participants.

strategies

n time allocation for approvals – Allowingsufficient time for ethical approvals wassuggested, as was increasing research funders’awareness of time needed for approvals and ofthe difficulties of keeping to timescales (e.g.when dealing with organisations).

3.7 Research community

challenges

n planning and preparation – Some researcherswere aware of their own shortcomings regardingplanning recruitment.

It always takes longer. It’s time-consuming. Inever had a project finish on time.

Eight interviewees thought they seldomallocated sufficient time for recruitment and

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consent. For example, more time is needed forconsent with people with learning disabilitiesthan with most other groups.

None of it is easy. It is always more difficultand time consuming than one thinks.

One interviewee said researchers should takemore personal responsibility for recruitment.

If someone comes to me [with worries aboutrecruitment], I say: Do your homework andwork hard to make it as positive anexperience for people as possible.

n study design – Recruitment for experimentaldesign studies was thought to be particularlydifficult. Randomisation was thought to beexceptionally challenging in adult social careresearch because the methodology was oftennot sufficiently clear to potential participants. Forexample, it needs to be explained thatparticipants might not directly benefit (or loseout) from taking part in research.

Some common methods of reaching individualswere criticised, such as using posters ornewsletters and expecting potential participantsto get in contact with researchers, as theseapproaches do not engage many potentialresearch participants.

There are things we know don’t work andwe still do them.

Also, two interviewees thought that adult socialcare researchers have little experience ofcollecting primary data on a large scale, and,hence, of the recruitment issues involved.

n testing and validating research tools – Threeinterviewees mentioned that some measurementtools, which can have an impact on recruitmentand retention to studies, were often not suitablefor some settings and that questionnaires wereoften too long or difficult to complete. Fourinterviewees said that pilot tests usingmeasurement tools were often absent,insufficient or were carried out with a differentgroup than the group being researched.

Time gets in the way [of running pilotstudies].

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You need to test [questionnaires] with actualrespondents to spot problems.

We’ve got to go to the people who will beconcerned. In health research we wouldexpect that.

n sharing knowledge – It was also noted thatexchange of knowledge about recruitmentstrategies among researchers was limited.

Even in a small research unit, you don’talways hear what worked.

strategies

n Realistic research timetables – Adequate timeallocation to all stages of projects, allowing forflexibility and frequent contact with potentialparticipants (e.g. organisations), was seen ascrucial. One interviewee said they found ituseful to pretend that their recruitment targetwas 20% higher.

I have over-recruited effectively, by beingreally cautious, doing loads of work upfront.All was ok.

n building effective relationships –Interviewees felt that building trustingrelationships and partnerships with services andinvolving user/carer groups and practitioners inresearch would advance recruitment.

I don’t think recruitment is a problem. It’s allabout relationships.

You can’t underestimate the importance ofstaying engaged with the service.

Three interviewees thought researchers shouldbe more willing to share control and leadershipof research with user/carer organisations.

Researchers need to improve their skills forappropriately involving users, carers andpractitioners in research and improveinvolvement, for example by user-ledresearch or coproduced research.

Two interviewees had recruited peer-researchers and provided them with training andsupport to conduct interviews; both thoughtthat having peer-researchers on their teamimproved recruitment.

n Methodological expertise – Researcherscould improve their methodological rigour,which can impact on recruitment success anddata availability. For example, by ensuringquestionnaires are in an accessible format,potential participants are not discouraged bydifficult materials. Another example could be

securing advanced consent from service users,so that existing data could be utilised as muchas possible, including health care data, whichmay help to answer some questions in careresearch, especially for people not known toservices in that sector but who may use healthservices.

n sharing knowledge – Sharing ideas andsupporting relationships among researchers andpractitioners were thought to be important, andcould be supported, e.g. by NIHR SSCR.

4. discussionAlmost all interviewees had experienceddifficulties in recruitment for adult social careresearch studies, and some described ways theyhad used to mitigate them. Our findings areconsistent with healthcare studies that concludethat recruitment often takes longer and is moreexpensive than anticipated (e.g. Miller et al.2003). Adult social care researchers have to dealwith additional challenges, such as variationsand frequent changes in the organisation andpatterns of provision.

The senior researchers in this sample reportedthat because adult social care organisations lacktheir own infrastructure or external researchsupport, research engagement was not a priorityfor them, so it was often difficult to secure theirparticipation. As shown in healthcare research,providers may either facilitate or inhibitrecruitment as they often control access topotential participants (Miller et al. 2003,Namageyo-Funa et al. 2014).

Face-to-face contact with organisational leadersand gatekeepers was recommended, consistentwith the literature showing that ‘less personal’recruitment methods such as newsletters orposters were usually less effective, especially inmulti-cultural contexts (Eide and Allen 2005).Interviewees reported benefits of buildingrelationships with gatekeeper organisations aspartners, consistent with previous reports ofpositive recruitment outcomes fromcollaborative relationships with organisations inhealthcare (Miller et al. 2003, Namageyo-Funaet al. 2014). However, long-term research plans,including investment, would be needed tosupport the development of lasting relationshipswith organisations.

Some of the issues concerning a betterinfrastructure to support adult social careresearch are the subject of action by the NIHR,notably CRN support. Very few respondentscommented on the impact of the CRN inproviding support for recruitment to adult socialcare research, but interviews were conducted inwhat were early days (formally speaking) indeveloping working relationships between adultsocial care researchers, providers, LAs and theCRN. Other aspects of the research supportinfrastructure remain to be developed, such ascapacity in LAs and providers; contractualrequirements; and financial incentives.

Interviewees reported persistent sample biasesin adult social care research. One difficulty wasthat care practitioners, who are oftengatekeepers, may not be fully cooperative inrecruitment processes, and, for example, screenout potentially eligible participants who theyjudge to be ‘unsuitable’. One researcherbypassed this selection bias by using socialmedia, thus reaching a larger and more diversepopulation than when they tried to recruit via acare provider; however, this may also beproblematic in terms of recruitment bias.Recently, social media have been promoted asefficient and cost-effective recruitment tools,although they have other limitations (Kurtzke etal. 2013, Arigo et al. 2018). Additionally,research registers such as JDR can facilitateeffective recruitment and reduce recruitmentbarriers (Krysinska et al. 2017). This highlightsthe need for flexibility and the use of variousrecruitment pathways and methods and for carein planning recruitment strategies.

Recruiting specific groups of users, carers andprofessionals may present particular challenges.

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For example, people from BAME groups havebeen under-represented in adult social careresearch and may require targeted recruitmentmethods; people with dementia and fluctuatinglevels of capacity need adjustment to theconsent process; or groups with no clear accessroute, such as self-funders or personal assistantsfor working disabled people, require flexible andcreative recruitment strategies. However, someinterviewees demonstrated successfulrecruitment outcomes. There seems to be aneed here, as in other aspects of recruitment toadult social care studies, to build a betterevidence base to guide practice in futurestudies.

Some interviewees said that user/carer inclusionin research as active collaborators had led toincreased participation and access toparticipants, including seldom-heard groups, asreported elsewhere (Staley 2009, Brett et al.2014). They said that user/carer groups ororganisations promoting their research addedcredibility to their projects and their participantsconfirmed that they were more likely to engagethan if the research was promoted by auniversity. This result confirms previous reportsof recruitment benefits when studies wereaccessed through trusted community agencies(Miller et al. 2003, Brett et al. 2014).

The comments about greater involvement ofservice users and carers in studies reflectcontinuing discussion about approaches to co-production of research in adult social care (e.g.Allen et al. 2019) and user-led research(Beresford and Croft 2012). It is an area thatrequires further empirical investigation as to itsimpact on research and improving researchpractice. We should also add the importance ofinvolving practitioners in adult social careresearch, given the lack of a comparable groupof professionals to the clinical academics inhealthcare whose roles straddle the researchand the practice worlds.

Interviewees thought that researchers should

improve planning and preparation ofrecruitment, including setting realistic targets fortime and resources needed, as suggested inhealth research (Gul et al. 2010, Archibald andMunce 2015). Interviewees suggested thatfunders should allow sufficient time andresources for recruitment and provide financialincentives and practical support for providersand user/carer organisations. Financialincentives for organisations have been shown toimprove recruitment in health research (Miller etal. 2003, Rugkåsa and Canvin 2011).

Recruitment for some study designs wasidentified as particularly difficult. This isconsistent with previous studies reportingrecruitment for randomised trials in healthresearch as challenging, as participants’preferences for particular interventions can playa role in recruitment (Miller et al. 2003, Walterset al. 2017). Better understanding amongst allstakeholders in adult social care research aboutrandomised trials and different approaches tothem may help improve recruitment to studies(Woods and Russell 2014).

Furthermore, interviewees suggested buildingresearch capacity, a need which has beenrecognised previously (Manthorpe and Moriarty2016). As noted above, this is another area thathas become the focus of improvement, namelywork by the NIHR through its SSCR andAcademy to develop support for more researchcapacity in adult social care. It is hoped thatlearning from this work can quickly cascade intomore rapid and widespread research capacitydevelopment in the sector. Various commentsabout the arrangements for ethics and researchgovernance were made by interviewees. Ofcourse, these fall under the UK policyframework for health and social care research(Health Research Authority 2017) and here weonly have the views of the researchers.However, this might be an area for closerscrutiny to see what changes might be made tohelp with recruitment to adult social careresearch.

5. liMitations The main limitation of this review is that theindividuals who participated may not berepresentative of the wider adult social careresearch field. We have to bear that in mindwhen interpreting the results of the interviews.

Also, it should be noted that the viewspresented here have not been triangulated withthose of other stakeholders, such as providerorganisations, and this could be helpful to do infuture.

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6. conclusionsInterviewees were eager to share theirexperiences of recruitment challenges in adultsocial care research and to find strategies toovercome them. They were keen to see theexisting knowledge drawn together, and toshare successful approaches and build upon

them. Strengthening the capabilities of the adultsocial care research community, influencingfunding bodies and increasing publicengagement were seen as opportunities forsignificant developments in adult social careresearch in the near future.

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further informationInformation on all NIHR SSCR-funded studies and reviewsare available on the School's website (www.sscr.nihr.ac.uk).

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The NIHR School for Social Care Research is funded by theNational Institute for Health Research. www.nihr.ac.uk