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Larkin, Mary; Milne, Alisoun; Henwood, Melanie; Croisdale-Appleby, David and Clark, Michael (2017). IncludingFamily Carers: Adding Value and Impact to Research. The NIHR School for Social Care Research The School forSocial Care Research, London.

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School for Social Care Research

REPORT OF A SEMINAR HELD ON 21 FEBRUARY 2017 AT THE LONDON SCHOOL OF ECONOMICS AND POLITICAL SCIENCE

Independent Advisory Group on Carers

NIHR School for Social Care Research

INCLUDING FAMILY CARERS ADDING VALUE AND IMPACT TO RESEARCH

The NIHR School for Social Care ResearchThe School for Social Care Research was set up by the NationalInstitute for Health Research (NIHR) to develop and improve theevidence base for adult social care practice in England in 2009. Itconducts and commissions high-quality research.

Independent Advisory Group on Carers The IAGC was established in 2016 as the successor to the StandingCommission on Carers (2007–2016), independent advisoryorganisations established by government to provide expert advice to ministers and to the Carers Strategy Cross Government Board in formulating the national carers strategy.

This is independent work in part supported by the NIHR School forSocial Care Research and in part by the Department of Health. Theviews expressed in the work and this report are those of the authors,and not necessarily those of the NIHR School for Social CareResearch or the Department of Health/NIHR.

© School for Social Care Research, 2017

FOR

EW

OR

D

As family carers we are not a homogeneous group butcome in all shapes and sizes, and play an invaluablerole in society. We have a variety of experiences, andexpertise in the needs of the person or people we care foror have cared for as well as our own experiences of beingcarers. Across the diverse group of carers and caringsituations, we each have our own individual voice whichmay differ from that of the person we care for.

Yet, in research studies our voices are sometimes excludedor only sought when the cared for person is unable to givetheir own views. The focus on services or the cared forperson can sometimes ignore the experience and expertisecarers bring to an issue. Often the symbiotic nature of thecaring relationship is not recognised; so when the focus ison interventions for the cared for person the resultingimpact on their carers is overlooked. There is no doubtthat more research is needed on the role, needs andsupport for carers. But there is also no doubt that thevoice of carers needs to be captured across all health andsocial care studies even when the focus is on the cared forperson.

This report, from a workshop organised by theIndependent Advisory Group on Carers and the NIHRSchool for Social Care Research, highlights the pivotal rolecarers play in the effectiveness of future health and socialcare-related research. Carers can be valuable partners,providing unique inputs into all stages of research design,from forming the research question to the methodology,analysis and in sharing the findings.

Our voice as carers needs to become an integral part of allhealth or social care-related research studies. There areactions that research funders, research teams, the healthand social care sectors, and carers can take to make thishappen. This report highlights some of these but it isimportant that actions follow. The first step is to recognisecarers as a distinct, diverse and valuable group in research.

We welcome positive steps being taken to achieve thepriorities set out in this report.

Jeanne Carlin and Margaret DangoorNIHR SSCR User, Carer and Practitioner Reference Group

CONTENTS

Including family carers: adding value and impact to research

NIHR School for Social Care Research

Introduction

Personal and relationship rationale for including carers in research Summary of a presentation by the Rt Hon Norman Lamb MP 3

Including family carers: Economic considerations Summary of a presentation by Professor Martin Knapp 5

Including family carers: Indispensable in dementia research Summary of a presentation by Professor Sube Banerjee 7

Group discussion questions: Towards prioritising carersHow can value be added by including carers in your field of research? 10

What might be the opportunities to do so? 10

What are the challenges/barriers and how do we overcome them? 11

Plenary session summaryAdding value by including carers 14

Challenges 14

Actions needed 14

Conclusions and reflections The value of including carers 16

Genuine involvement 16

Learning from social care experience 16

Next steps 17

INCLUDING FAMILYCARERS

IntroductionA seminar on adding value and impact toresearch through the wider inclusion of familycarers took place on 21 February 2017 at theLondon School of Economics and PoliticalScience (LSE). It was funded jointly by theDepartment of Health and the NationalInstitute for Health Research School for SocialCare Research (NIHR SSCR), and organised bymembers of the Independent Advisory Groupon Carers (IAGC) and the NIHR SSCR. Thisreport provides an overview and reflectionson the event.

The aims of the event were to showcase andexplore the benefits and ‘added value’ ofincluding family carers in health- and socialcare-related research, and to explore howsuch inclusion can contribute towardsincreasing the evidence base, maximising theimpact of research in terms of theeffectiveness and cost-effectiveness ofsupport and interventions. The processesinvolved in broadening organisational and/orfunding mandates to include family carerswere also explored. This included discussionof the nature of support available to seminardelegates following the event itself to helpthem work to widen the involvement ofcarers in research, including advice frommembers of the IAGC and NIHR SSCR, andvia networking opportunities betweendelegates.

The event was a ‘by-invitation only’symposium and delegates were selected fortheir particular expertise as carers orrepresentatives of relevant organisations,including those responsible for funding ordelivering research programmes that areoften relevant to carers’ issues, and couldinclude family carers. The number ofdelegates was deliberately limited to 30 toensure meaningful engagement and

participation. Those who attended included:carers; leading carer researchers (from KingsCollege London, Bristol University, LSE,Sheffield University and the NIHR SSCR), and representatives from the followingorganisations:

• Association of Directors of Adult SocialServices (ADASS)

• Age UK

• Carers Trust

• Carers UK

• Dementia UK

• Department of Health

• Economic and Social Research Council(ESRC)

• Greater Manchester CVS

• Health Education England

• Health Services & Delivery Research(HS&DR) Programme at the NationalInstitute for Health Research, Evaluation,Trials and Studies Coordinating Centre

• Joint University Council Social WorkEducation Committee (JUC-SWEC)

• MENCAP

• MS Society

• NHS England

• National Institute for Health and CareExcellence (NICE)

• Office of the Chief Social Worker forAdults

• Parkinson's UK

• Public Health England

• Skills for Care

2NIHR School for Social Care Research


THE EVENT WAS ORGANISED AND FACILITATED BY

Dr Mary Larkin (IAGC)

Professor Alisoun Milne (IAGC)

Dr Melanie Henwood (IAGC)

Professor David Croisdale-Appleby (Chair, IAGC)

Dr Michael Clark (NIHR SSCR)

PERSONAL ANDRELATIONSHIPRATIONALE FORINCLUDING CARERSIN RESEARCH

The Rt Hon Norman Lamb MP

Presentation by the Liberal DemocratSpokesperson on Health and former Ministerof State, Department of Health

The relationship between the carer and thecared-for is embedded in the shared life-course of both the carer and the cared forperson. There are good relationships and badrelationships, constructive and destructive,and these will be amplified in caringsituations.

Many carers have provided care for manyhours a week, over many years. They knowthe person best and are experts in thesituation, how the situation is developing,what seems to help and what seems to causedistress or detriment. Is this knowledge andinformation not essential to the wellbeing ofthe cared-for person? And, if not captured in research information, then importantknowledge is being routinely ignored.

The duration and intensity of caring isincreasing and is likely to continue to do so in the future because of the move to self-management and to more care beingdelivered at home. The latter is aided bytechnical developments such as telemedicineand telecare as part of the digital revolution.Therefore, carers, already central to theeffective care of the cared-for person, arebecoming increasingly involved in providingcomplex care and treatments etc. Indeed, aswe move to compliance with a newtreatment or intervention, we may beincreasingly reliant on the cooperation andsupport of the carer, and on their capability to deliver such care.

The ‘burden’ on carers is increasing at analarming rate. More and more carers findthemselves as multi-generational, sequentialand/or serial carers, caring for grandparents,parents, siblings and children. Diseases suchas dementia often require years, evendecades, of caring for someone with ever-increasing needs and often with increasinglyirrational and sometimes violent incidents.Some caring situations, such as those ofparents caring for children with learningdisabilities, can extend over the majority of a

carer’s lifespan. Thus, building the resilienceand coping strategies of carers can be vital inenabling them to continue caring. Howshould research best address such issues?

We already know from research conductedamongst carers, that the activity of caringfrequently has a direct and damaging impacton their health and well-being. But simplyeliciting the views of carers in pre-designedresearch information-seeking is, in itself, notenough. We need to include carers in thetriangulation of assessing the effectiveness ofinterventions, engaging them as part ofevaluation methodology and seeking theirinput in all stages of research design, from itsinception onwards. This is an essential movewe want to see as ‘normal’ or standardresearch activity.

It is important too, that we assess the impactof interventions or treatment on the carer aswell as on the cared-for person. The carerneeds to be able to cope for interventions tobe successful, so we need to ask – dointerventions to support a person also benefitthe carer, or are there dis-benefits to the carerto be identified and considered? Lookingbeyond this, what about situations where thebenefit is to the carer but may make littleobjective difference to the person cared for?What are the trade-offs or tensions, and howshould these be dealt with in future research?

We see research in a paradigm of looking forthe potential benefit to the cared-for, but weshould be seeking to consider, and wherepossible ensure, equality of opportunity bothfor the carer and the cared-for person.

I hope that the outcomes of today’sinnovative symposium will see researchersensure the presence of carers in their researchdesign considerations, and research fundersinsisting that this be a condition of providingfunding. It is not so very long ago that themeaningful inclusion of service users becamea mandatory feature of healthcare and socialcare research; let us ensure that today, we firethe starting gun to ensure the same becomestrue for inclusion of carers.



INCLUDING FAMILYCARERS:ECONOMICCONSIDERATIONS

Professor Martin Knapp

Summary of a presentation by Martin Knapp, Professor of Social Policy, London School ofEconomics and Political Science, Director of the Personal Social Services Research Unit, LSE, andDirector of the NIHR School for Social Care Research

Professor Knapp outlined the work of theNIHR School for Social Care Research. It hasfunded over 100 research projects to-date,some of which directly concern carers, andwill add substantially to the evidence base.

Economic evidence is needed becauseresources are limited and decision-makersneed to be informed about how to get thebest out of available resources in terms ofwhat is most effective, affordable, and cost-effective. If the core policy/practice questionis: “Does this intervention work?” Theeconomic question is: “Is it worth it?”. So, anevaluation must define outcomes and costs,and there may be difficult trade-offs betweenthese.

He drew attention to the evidence onprojections of future demand/need for care,and supply of carers. A model developed atLSE has been used to explore differentassumptions, which suggests the emergenceof a growing gap between supply of, anddemand for, family carers.

In looking at evidence on interventionsProfessor Knapp drew on a recent(forthcoming) review of internationalevidence undertaken at LSE. This identifiedfour main types of intervention:

• Services aimed at the care-recipient

• Services aimed directly at the carer

• Work conditions

• Cash benefits.

Robust, quantifiable evidence to use inmodelling could only be found in relation tocarer employment status, suggesting thatinterventions around statutory care leave,

flexible working arrangements and formalcare can all make a difference to improvingemployment outcomes for carers.

The START Study

In looking at economic evidence, ProfessorKnapp used the example of the START(STrAtegies for RelaTives) intervention, amulti-centre Randomised Control Trial (RCT)involving 260 family carers*. The interventionuses a manual-based coping strategy forfamily carers of people with dementia,providing an individual programme of eightsessions over 8–14 weeks delivered bypsychology graduates. The programmeteaches carers techniques for understandingand coping with the behaviour of the personthey care for.

Outcomes at eight months:

• START improved carer mental health andhealth-related quality of life.

• Carers receiving usual support were fourtimes more likely to have clinicallysignificant depression than carers withSTART.

• The cost was off-set by reduced use ofother services by carers.

Outcomes at 24 months showed:

• Carers with usual support were seventimes more likely to have clinicallysignificant depression.

• Carers with START had significantly betterquality of life.

For the people with dementia there were nodifferences in health status or quality of life,but some delay to care home admission.



* Knapp M, King D, Romeo R, Schehl B, Barber J, Griffin M, Rapaport P, Livingston D, Mummery C, Walker Z,How JL, Cooper C, Livingston G (2013) Cost effectiveness of a manual based coping strategy programme inpromoting the mental health of family carers of people with dementia (the START (STrAtegies for RelaTives)study): a pragmatic randomised controlled trial, British Medical Journal, 347, f6342, 1–12.

START produces better outcomes; does notcost more; it is clearly cost-effective.

Further evaluation is being undertaken at five-year follow up and results will be availablelater in 2017.

Conclusion

In conclusion, Professor Knapp remarked that

it was essential to include economic evidence:

• Evidence on the economic consequencesof ‘carer interventions’ is scarce.

• Ideally, every new evaluative study wouldinclude an economics component.

• Robust studies (e.g. RCTs etc.) are needed,but quicker, cheaper, yet still robust,studies also have a contribution to make.

INCLUDING FAMILYCARERS: INDISPENSABLE INDEMENTIA RESEARCH


Professor Sube Banerjee

Summary of a presentation by Sube Banerjee, Professor of Dementia, Director of the Centre forDementia Studies, and Associate Dean, University of Sussex

Professor Banerjee outlined the globalincidence of dementia, and projections on theincrease in numbers likely to be affected infuture. He pointed out that the NationalDementia Strategy had recognized that:

• Family carers are the most importantresource available for people withdementia (and this is recognized indementia strategies around the world);

• The availability of a carer is a vitaldeterminant of positive outcomes forpeople with dementia; and

• Having a co-resident carer is a 20-foldprotective factor on the risk ofinstitutionalization.

At present, not enough is known about whatworks to support carers supporting peoplewith dementia.

Training healthcare professionals

Professor Banerjee described the ‘Time forDementia’programme, run by HealthEducation England, which focuses on thetraining of healthcare professionals, helpingthem to understand the impact of dementiaon people and their family carers.

The programme involves the Brighton andSussex Medical School, the Alzheimer’sSociety and the University of Surrey, to buildan understanding in students of:

• What it is to be old and ill in society.

• What it is to have a long-term condition.

• The role of family and carers.

• Dementia.

• Compassion, empathy andunderstanding.

The Alzheimer’s Society is managing anetwork of 300 families, and the medicalstudent intakes of 2014, 2015 and 2016undertake visits in pairs four times a year tofamilies affected by dementia. The aim is todeliver the programme across allundergraduate healthcare in the region withinthree years.

The programme is being evaluated, looking atthe impact both on students, and on peoplewith dementia and their families. Outcomesso far indicate positive benefits.

Supporting carers

Turning to consider interventions to supportcarers, Professor Banerjee also cited theSTART programme, and highlighted theimplementation gap in getting suchprogrammes taken up and adopted morewidely.

Professor Banerjee also referred to a study todevelop a measure of quality of life of carersof people with dementia (C-DEMQOL study).*The voice of carers was an integral element ofthe study from design onwards, and includeda carer as a co-applicant, and theestablishment of a Lived Experience AdvisoryPanel (LEAP) which influenced both thedirection and findings of the research.



* www.bsms.ac.uk/research/cds/research/quality-of-life-in-dementia.aspx

http://www.bsms.ac.uk/research/cds/research/quality-of-life-in-dementia.aspx

GROUP DISCUSSION: TOWARDSPRIORITISINGCARERS

Group discussion

Informed by the three presentations, delegates were allocated to small groups and invited toconsider three key questions:

n How can value be added by including carers in your field of research?

n What might be the opportunities to do so?

n What are the challenges/barriers and how do we overcome them?

The key points of discussion and reflection on each of these themes are captured below.

How can value be added by includingcarers in your field of research?

The discussion groups were clear that there isvalue to be gained from appropriatelyincluding carers in health- and social care-relatedresearch. They stressed that the carer’sperspective is different from that of theservice user/patient, and is often veryimportant to the lives of the dyad and toservices and, hence, ought to be similarlyimportant to research. Discussions indicatedthat in the right circumstances carers canbring a ‘broader lens’ to research than iscurrently often the case. Carers can bringtheir own distinctive perspectives and, insome circumstances, also act as a voice forthe people they care for.

By contributing to research carers can:

• Help ensure research is relevant to the realworlds of many people, and resonateswith their lived experiences of caring anddealing with care needs, disability andillness.

• Assist in ensuring research is robust by, forexample, helping to make sure that itaddresses the right questions andcircumstances of people’s lives, and helpidentify the right data to collect, especiallythat pertaining to outcomes.

• Support in helping to make the researchpracticable and deliverable by helping toplan, for example, data collection that fitsbest with people’s lives. This may also helpto make the delivery of research moreefficient.

• Ensure research is relevant and therebyhelp it have impact on improving care,services and outcomes for people. Carersspeaking about the findings and relevanceof research can be an importantadditional voice in communicatingimportant messages from research torelevant audiences, includingpractitioners, managers of services,commissioners and policy makers.

• There are good examples of carers beinginvolved in all stages of research, andthese can be adopted more widely. Forexample, the NIHR SSCR routinely includescarers in the running of the School and itsresearch projects. Parkinson’s UK alsoinvolves carers in the development ofresearch projects and reviewing proposals.

• Members of the discussion groups alsofelt that involving carers in research canhelp to send an important public policyand societal message about the value ofcarers.

• People were very clear that involvementmust be done in the right way, a point wewill elaborate on in the next sections ofthis report.

What might be the opportunities todo so?

Participants were asked to identifyopportunities to include carers in research andconsidered that:

• The demographic changes society is goingthrough, notably the ageing population



and more young people living longer withcomplex needs and the challenges theseare likely to bring, present an opportunityto highlight the importance of carers,their value to society and the need toinclude them in research.

• People need to be creative aboutincluding carers and not assume they cancontribute in the same ways or at thesame time as others, but ensure suitableopportunities are made available. Use oftechnology, including video conferencingand online systems for contributing tosurveys and documents, are goodexamples. Another creative idea may beto run an event for service users andenable carers to contribute to research ata parallel event.

• People can be involved in all stages ofresearch, from the earliest stages ofdeveloping proposals, and there arelessons to be drawn together and sharedto spread good practice. When carers areinvolved in reviewing research proposalsand on research funding panels, theyought to be allowed to contribute todiscussions about all the aspects of theresearch proposals that they feelcomfortable discussing andknowledgeable about.

• There are networks of carers to work withand develop their capacity and skills tocontribute to research. This may includebuilding relationships between researchersand carer networks, and training aboutinvolvement in research for both groups.Longer term partnerships with carers arenecessary and will be more beneficial thanseeking one-off engagements with them.

In order to maximise the ability of carers tocontribute to projects in the ways identifiedabove, they need to be involved in theformulation of projects at an early stage. It isthen that they can have the most impact inensuring the questions are relevant and thatmethods will fit with the lives of carers andcollect the most suitable data, especially interms of outcomes.

What are the challenges/barriers andhow do we overcome them?

Participants were also asked to identify whatthey saw as the main challenges and barriersto wider involvement of carers in research.They identified the following:

• People too often think of involving carerslate in the process. Sometimes this may be merely an inappropriate ‘tick box’,tokenistic process of involvement.

• It should not be assumed that carers wantspecific things from being involved orexpect particular treatment. Equally, itshould not be assumed they will do it forfree and the expectation should be thatappropriate payment is available for theirtime and input. The main thing is to askthem, and to be respectful of them andwhat they want and expect. Longer-termpartnerships with carers will make thiseasier.

• The diversity of carers and caringsituations can be a challenge. It is notpossible to develop a representative groupof carers to be involved and they shouldnot be seen in that role. They are there tooffer their distinctive experiences as anadditional perspective when consideringthe research project.

• There are groups of people who are morelikely to be overlooked, notably formercarers (those recently bereaved, or whohave ceased to be carers because theperson being cared for has moved to acare home). They should not be excluded,and, indeed, including people with recentcaring experience but who now havemore flexibility over their time can bebeneficial. Longer-term partnerships with carers would help to identify theseopportunities.

• There is a primary challenge to includethose who do not identify themselves as a ‘carer’, but who nevertheless undertakecaring for someone. Finding the rightlanguage and channels of communicationwill help to include this group of people.


11 NIHR School for Social Care Research

• Third sector organisations are sometimesseen as a means of recruiting carers andthere are risks that these groups can betaken for granted or treated as‘handmaidens’ rather than engaged asfull partners.

• Wider social expectations and stigma canmean that carers are not seen as alegitimate group in terms of research.There was a view expressed that researchoften mirrors societal unwillingness toface trade-offs or difficult decisions withregard to carers.

• There was a perception that in somequarters carer-related issues are seen assoft, ‘fluffy’ and not core concerns tohealth and social care practice or policy,and, hence, not to research. In reality, theissues are tangible, with measurableimpacts on people’s lives, and policydecisions.

• There were certain views expressed aboutresearch and methods that, in part, arereal challenges to researchers and in partmay represent lack of communicationabout approaches to research. Forexample, there was a view that includingcarers can make it harder to conductrandomised control trials, but this is notthe case. In fact, involving carers can helpto ensure that a trial addresses pertinentquestions in its design, the outcomemeasures used, and the analysis of data.Another concern was that research is notvery good at capturing things that are notspecific interventions. Research canexplore many types of questions. It can beharder to explore more complex or lesstangible issues, but it is not impossibleand progress has been made in a numberof ways to address methodologicalchallenges. One such is the use of theframework for evaluating complexinterventions developed by the MedicalResearch Council.

• The concern was raised that it is difficultto obtain funding for longitudinalresearch about carers.

• Research systems can make it harder toinclude carers in research. For example,

it is not easy to obtain the additionalresources to undertake research in carehomes and people’s own homescompared with what might be availablefor research in hospitals.

• Carers may not fully understand theobjectives of research and the uses ofdata, and may be fearful about why somedata are being collected or that it may beshared inappropriately.

• For some there may be barriers in terms oftensions between payment forinvolvement in research and impact onreceipt of welfare benefits. There areexperiences and good practice to draw onhere from involvement of patients/serviceusers to help address these issues.

• It can be difficult to make alternative carearrangements to free up the time forcarers to be involved. Similarly, involvingworking carers may be difficult because ofthe demands on their time (some of theideas above on being creative aboutinvolvement may potentially overcomesome of these challenges, such as withSkype, phone calls, emails etc.).

• There is a need to acknowledge thatwhen the views of the carer and the‘cared-for’ are entwined in a researchproject, it is important to separate viewsand experiences at all stages of theresearch programme and not assume theyare always consistent.

• Involvement is not always an easy processand this needs to be recognised andmanaged when it is not going smoothlyor as planned, and lessons need to belearnt where possible. The purpose ofinvolving carers needs to be made clearthroughout to set and manageappropriate expectations.

• There is a need to help carers to beinvolved. One example is avoiding the useof jargon. Another is explaining researchprocesses that carers may not be familiarwith; also, ensuring payments are madefor time and travel and for any substitutecare needed.



PLENARY SESSION: INCLUDING CARERS,CHALLENGES ANDACTIONS

Plenary session summary

Reflecting on the discussions of the event, delegates prioritised the following:

Adding value by including carers

n Ensuring research funding panels give adequate weighting to carers;funders should include the voice of carers and involvement of carersshould be a full partnership and not a mere tick-box exercise.

n Involving carers throughout the research process and from as early astage as possible i.e. when thinking about the research project designand identifying research questions.

n It should not be assumed that the carer is a derivative of the cared-forperson or that views are shared and interests coincide.

Challenges

n Accessing harder to reach groups, including carers who don’t define orview themselves as such.

n Acknowledging and reflecting the variety and complexity of caringsituations.

n Getting funders, especially health research funders, to prioritise carers’issues, and understand how issues could benefit from a carers’perspective and their inclusion.

Actions needed

n Drawing on the lessons from ‘PPI’ (Patient and Public Involvement) toinvolve carers as a group with a specific role, remit and contribution anda clear ‘set of voices’ and perspectives.

n Recognising that carer involvement is complex and, whilst ultimatelyrewarding, can at times be challenging and, hence, needs appropriatetime, resources and planning to make it work for everyone.

n Building an infrastructure and knowledge-base to enable more and betterresearch partnerships with carers and resource their involvement properly.

n Providing support and training for carers to be involved, includingappropriate financial support.

n Avoiding jargon and unhelpful assumptions to promote goodinvolvement.



CONCLUSIONS ANDREFLECTIONS

Conclusions and reflections

The objectives of this event, as stated in the introduction, were to look at the added value ofincluding and involving family carers in health- and social care-related research. While there hasbeen greater recognition of carers in social care research, and in service development too, it isapparent that this has been slower to gain traction in health-related research and health carematters. The seminar was therefore especially concerned to address this dimension.

The value of including carers

Involving family carers, and valuing their roleand contribution, is not only morally right butis pivotal to the future effectiveness of health-related research. Most people with long termhealth conditions live in the community and agrowing number receive support from arelative. Until recently – where carers havebeen included in research – it has tended tobe as proxies for the service user or patient.This not only risks inappropriate assumptionsabout proxy voices, but also fails to recognisethat carer’s views are valid in their own rightand that they can add significantly to thedepth, breadth and efficacy of research andits ultimate impact.

Expecting carers to ‘represent’ a service user is inappropriate. Many ‘health careinterventions’ for patients can also affectcarers and the patient/carer dyad andrelationship. For a health-related service orintervention to be sustainable it almostcertainly needs to have carer ‘buy in’ andsupport, especially if the patient lacks capacityor needs help to make use of the service. It isperhaps surprising that it has taken us so longto engage with the need to meaningfullyinclude carers in health-related research.

Carers are a hugely valuable source ofexperience and expertise about the patient,themselves, the caring relationship and thedelivery of effective health care to best fittheir circumstances. They typically have adetailed knowledge about the healthcondition’s trajectory and how it has affectedthe person’s care needs, well-being andquality of life, as well as their own. Carers are a significant source of research evidenceincluding: data on service effectiveness,health and quality of life; ability to undertakea range of activities; and on the livedexperience, the difference an intervention has

made to their lives, their relative and to theirrelationship. Carers can help research to bebetter; to change the way it is undertaken,inform research questions, design andmethods, analysis and reporting, and helpensure impact is captured in the round and ina meaningful way. It makes no sense not tomake the best use of this rich experience andknowledge.

Genuine involvement

One of the key messages that came out of the day was the importance of genuineinvolvement. For carer’s perspectives andknowledge to benefit research, they need to be involved early: at the research designstage, and to be included at all subsequentstages. Their time and input needs to beadequately recognised, including financially,and they need to be treated as partners, asexperts in their own lives and (often) the lifeof the person with the health condition. Thisis not only respectful but is about genuineinvolvement, not a token last minute tick-boxexercise or afterthought. Longer-termresearch partnerships with carers would makeall this more realistic.

Learning from social care experience

Social care research has been working withcarers for some time. It hasn’t always donethis well, and not always fully, but it hasengaged with some of the challengesidentified by participants, and lessons can be drawn to inform the health field. Gainingcarers’ views on how to best capture theimpact of a service or intervention is oneexample, and incorporating tools and/ormeasures to evaluate carers’ perspectives isanother. Recognising that every carer, everyrelationship, every experience of a health



condition and of care needs is different is a third challenge that social care hasacknowledged, if not fully addressed (yet!)and this is an issue that more health-relatedresearch now needs to routinely take seriousaccount of too.

We heard at the event about at least twoexamples of well designed, robust health-related research that involved carers, andabout interventions that benefited carers andthe people they care for. Dementia is one ofthe key health challenges facing patients,carers and care services, and is a conditionthat has a profound impact on bothindividuals’ lives as well as on relationships. It is probably no coincidence that this is one of the conditions that has begun tomeaningfully involve carers, shifting from the proxy model to more sophisticatedmodels of involvement and inclusion.Routinely gathering the views of users andcarers about research proposals is one of thekey ways in which funders, including somehealth-related funders, are taking carerinvolvement onboard.

There is a long way to go and carers oftenreport feeling ‘dumped on’ or expected torespond to a researcher’s questions withouthaving been consulted about the study designor objectives. Good practice in carer inclusionand involvement needs to be collated andadded to and then embedded in all stages ofcommissioning and conducting research. Forthis to happen it needs to be disseminatedwidely amongst funders of health-relatedresearch, health-related researchers andcentres and among those who design, fund,commission or engage with research in thehealth care field.

There was clearly an appetite amongstparticipants at the event to learn fromexisting good practice and engage fully with

carers as research partners. Models frompatient and public involvement initiativeswere also seen as important to draw on.

Research methods can struggle to capture thecomplexity of ‘research impact’ and of users’and carers’ lives and relationships, but captureit they must if we are to genuinely includecarers in research. Work in this arena isgrowing but it needs investment. Otherbarriers can include the additional costs ofinvolving carers in research, and there aresome concerns about how to do‘involvement’ properly, capture impact in acoherent and sufficiently ‘gold standard’ way,sensitively including those who do not viewthemselves as ‘carers’, and acquireorganisational ‘sign up’ to multi-level carerinvolvement for longer-term researchpartnerships.

Next steps

The event was infused with genuineenthusiasm, commitment, creativity, energyand a spirit of ‘can do’. There was recognitionthat carers can add significantly to theeffectiveness and cost effectiveness ofresearch. Some participants were alreadydoing work that involved carers and hadexamples to share.

There was wide acceptance that carers needto play a much bigger role in, and be valuedby, health-related research. This is thebeginning of an exciting and engagingjourney for the health research communityand we hope the event will be a catalyst inshifting thinking, engaging hearts and mindsand (further) firing up participants toimplement changes in their domain(s), andinvolve carers in current and future healthresearch for all our benefit.


17 NIHR School for Social Care Research

The NIHR

Since its establishment in 2006, the National Institute for Health Research (NIHR) has contributed significantly to the health and wealth of the nation and is now the most comprehensive research system in the world.

The National Institute for Health Research (NIHR) is funded through the Department of Health to improvethe health and wealth of the nation through research. It works with patients and the public to shape itsresearch agenda, finds new ways of preventing, identifying and treating ill health, evaluates theeffectiveness and impact of new healthcare treatments and ensures that the best possible evidence isavailable to inform decisions about health and social care. The NIHR provides world-class infrastructure in the NHS and attracts investment into the UK by supporting partnerships with life science companies,including small and medium enterprises, and charities, and builds capacity and leadership in the researchworkforce.

To find out more about the NIHR, and research commissioned through its various programmes and Schools,visit www.nihr.ac.uk

NIHR SCHOOL FOR SOCIALCARE RESEARCH

The NIHR School for Social CareResearch was established in2009 to commission world-class research to improve theevidence base for adult socialcare in England, and renewed in 2014. Since then, the Schoolhas commissioned 124 researchstudies – many of which look atthe needs of, and/or supportfor, carers. Many of its studiesengage with carers, and all havebeen reviewed by members ofthe School's User, Carer,Practitioner Reference Group.

To find out more visit theSchool's website atwww.sscr.nihr.ac.uk

NIHR DISSEMINATIONCENTRE

The NIHR Dissemination Centreaims to put good researchevidence at the heart ofdecision making in the NHS,public health and social care.

The Centre's work helpsclinicians, commissioners andpatients to make evidence-based decisions about whichtreatments and practices aremost effective and provide the best use of resources.

Read more about the Centre'sresearch Signals, Highlights and Themed Reviews atwww.dc.nihr.ac.uk

NIHR INVOLVE

Involve was established in 1996 and is part of, and fundedby, the NIHR to support activepublic involvement in NHS,public health and social careresearch. It is one of the few government-fundedprogrammes of its kind in the world. Involve's AdvisoryGroup includes a broad mix of individuals who use healthand social care services, carers,people from voluntaryorganisations, and healthservice and social carepractitioners, managers andresearchers.

Read more about NIHR Involveat www.invo.org.uk

http://www.nihr.ac.ukhttp://www.sscr.nihr.ac.ukhttp://www.dc.nihr.ac.ukhttp://www.invo.org.uk

NIHR School for Social Care ResearchLondon School of Economics and Political ScienceHoughton StreetLondonWC2A 2AE

Email: [email protected]

Tel: +44 (0)20 7955 6238

Website: www.sscr.nihr.ac.uk
mailto:[email protected]://www.sscr.nihr.ac.uk

open research onlineoro.open.ac.uk/52256/1/sscr iagc carers seminar report.pdf · 2020. 12. 19. ·...

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