Cameron, A., Johnson, E. K., Lloyd, L., Evans, S., Smith, R., Porteus,J., Darton, R., & Atkinson, T. (2019). Using Longitudinal qualitativeresearch to explore extra care housing. International Journal ofQualitative Studies on Health and Well-being, 14(1), [1593038].https://doi.org/10.1080/17482631.2019.1593038

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International Journal of Qualitative Studies on Healthand Well-being

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Using longitudinal qualitative research to exploreextra care housing

Ailsa Cameron, Eleanor K. Johnson, Liz Lloyd, Simon Evans, Randall Smith,Jeremy Porteus, Robin Darton & Teresa Atkinson

To cite this article: Ailsa Cameron, Eleanor K. Johnson, Liz Lloyd, Simon Evans, Randall Smith,Jeremy Porteus, Robin Darton & Teresa Atkinson (2019) Using longitudinal qualitative research toexplore extra care housing, International Journal of Qualitative Studies on Health and Well-being,14:1, 1593038, DOI: 10.1080/17482631.2019.1593038

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Using longitudinal qualitative research to explore extra care housingAilsa Cameron a, Eleanor K. Johnson a, Liz Lloyd a, Simon Evans b, Randall Smith a, Jeremy Porteusc,Robin Darton d and Teresa Atkinson b

aSchool for Policy Studies, University of Bristol, Bristol, UK; bAssociation for Dementia Studies, University of Worcester, Institute of Healthand Society, Worcester, UK; cHousing Learning and Improvement Network, London, UK; dPersonal Social Services Research Unit,University of Kent, Kent, UK

ABSTRACTPurpose: The process of individual ageing in the context of a care environment is marked bycontinuity and change. It is shaped by individual, health-related factors as well as by diversesocial and environmental factors, including characteristics of the places where older peoplelive. The aim of this paper was to explore how longitudinal qualitative research, as a researchmethod, could be used to explore older people’s changing care needs.Methods: The study used a longitudinal design to examine how the care and support needsof residents and their expectations of services developed over time and how these wereinfluenced by changes in the organisation of their housing as well as in the make-up of theresident population. Residents were interviewed on four occasions over 20 months.Results: The study highlighted the complex ways in which some participants proactivelymanaged the care and support they received, which we argue would have been difficult todiscern through other methods.Conclusion: The study adds to the growing evidence base that supports the use of qualita-tive longitudinal research; the approach enables the researcher to capture the diverse andmutable nature of older people’s experiences at a time of profound change in their lives.

ARTICLE HISTORYAccepted 3 March 2019

KEYWORDSQualitative longitudinalresearch; older people; extracare housing; housing withcare; care needs

Introduction

In the UK, the increase in life expectancy is frequentlyassociated with long-term health conditions, disabilitiesand a loss of ability to manage self-care, which have ledto increased demand for health and social care services(Atkinson et al., 2014; King’s Fund, 2014). Extra carehousing (ECH) is a form of housing with care builtspecifically for older people, often known as “assistedliving” or “senior housing” in the USA, Canada andAustralia (Atkinson et al., 2014). ECH has a particularplace in the range of social care services. It offersa distinct model which facilitates independent livingfor older adults with access to care and support whennecessary. There is therefore a social and temporaldimension to the study discussed in this paper, withattention to the lifecourse experiences of older resi-dents, their perceptions of their health and wellbeingas it changes over time, their experiences of living inECH, and how these interacted and influenced theirperceptions of ageing and receiving care services.

The context of ECH

The concept of the lifecourse focuses attention on time,change and continuity within individual lives and theinterrelationship of individual lives and social contexts

(Dannefer & Stettersten, 2010; Haraven & Adams, 1982).Individual experiences are shaped by historical period aswell as by social and economic inequalities. Moving intoan ECH “scheme” (or facility) is a major event in anindividual’s life but this event also needs to be under-stood in the wider social context of housing and care.ECH represents a particular contemporary perception ofthe optimal conditions for living when in need of care inold age (Shaw, West, Hagger, & Holland, 2016). At thesame time, it is undergoing significant changes asa result of contemporary political and economic pres-sures faced in England (Yeandle, 2016). For example,there is an increase in the number of schemes forolder people who wish to purchase a place, buta shrinking number for those who rely on state supportto rent (LaingBuisson, 2016) giving rise to concernsamong providers and commissioners about the futureof ECH for economically disadvantaged older people.

ECH offers those who need support the possibility ofobtaining this in a way that maximizes their capacity forindependent living. It thus reflects the paramount cul-tural values of independence and choice, which areubiquitous in social policies although severely testedin practice by cuts in public expenditure (Bligh,Cairncross, & Porteus, 2015). Unlike the more communalarrangements of a care home, residents of ECH schemeshave their own apartment behind their own front door,

CONTACT Ailsa Cameron A.Cameron@bris.ac.uk School for Policy Studies, University of Bristol, 8 Priory Road, Bristol BS8 1TZ, UK

INTERNATIONAL JOURNAL OF QUALITATIVE STUDIES ON HEALTH AND WELL-BEING2019, VOL. 14, 1593038https://doi.org/10.1080/17482631.2019.1593038

© 2019 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group.This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/4.0/), which permitsunrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

which signifies their control over the space they occupy,how they wish to live and who comes and goes. At thesame time, care is provided as and when it is needed sothat residents can avoid the pitfalls of “staying put,” suchas social isolation and “inappropriate housing”(Callaghan & Towers, 2014, p. 1429). Care needs areassessed prior to admission and/or when new needsappear to have emerged. Usually, each individual resi-dent has a plan for care and support provided routinely.In addition, amember of staff is available 24 hours a day,7 days a week, should unexpected needs arise (Atkinsonet al., 2014; Darton et al., 2012). “Care” typically includespersonal care, for example help with washing and dres-sing or taking medication, while “support” refers to helpwith domestic chores, such as cleaning, shopping orsocial activities within the schemes or in local commu-nities (Evans et al., 2017). Care and support is typicallyprovided by an on-site care team or, occasionally inkeeping with the personalisation agenda, by an externalprovider if arranged by the resident themselves or bytheir family members.

Balancing care needs

An important question facing the providers and com-missioners of ECH concerns the combination of indi-vidual residents with diverse care needs and howparticular combinations shape the overall characterof a scheme and its ability to function asa community. Managers of individual schemes gener-ally seek a balance of different levels of dependencyamong residents: those with no or minimal careneeds; those with medium-level care needs andthose with high-level care needs (Baker, 2002; Wrightet al., 2010). The widespread assumption underpin-ning this approach is that growing dependency willoccur over the course of a person’s residency andthat, as they age in place at the end of life or moveinto different settings, new residents with no or mini-mum care needs will move in. In theory, through thisapproach, the composition of schemes would be ina state of constant change in terms of the individualresidents while maintaining continuity in terms of theoverall profile. Not surprisingly, however, sucha balance is difficult to achieve in practice (Baker,2002; Wright et al., 2010). Extended life expectancyat the oldest ages has tended to reduce the deathrates of residents and increase the number with high-level care needs, while pressure on public resourceshas meant that people with high-level care needs aregiven priority access to publicly-funded schemes overthose with lower-level needs. An important elementof this research was to investigate how such changesplayed out in the lives of individual residents andinfluenced their experiences of ageing and receivingcare.

As a way of enabling older people to adapt to theirchanging health and capacity for self-care, ECHappears to offer a flexible and supportive option, anideal compromise between the struggle to cope aloneand the dread of traditional residential care. Yet, ques-tions arise about how its implied flexibility actuallyworks in practice, how responsive different schemesare to the changing needs of individuals over timeand how ECH can retain its ideal as a way of maximiz-ing older people’s independence and control when itsresidents have more complex needs as a result of illhealth and disability.

Contribution

Using a longitudinal qualitative research (LQR)approach, the aim of The Provision of Social Care inExtra Care Housing (ECHO) project was to investigatehow care is negotiated and delivered in ECH. Focusingon the “extra care” element of extra care housingservices, the ECHO project explored the perspectivesof residents on their changing care needs and theirexperiences of being cared for. Data were gatheredthrough a range of methods in four “rounds” over thecourse of one and a half years. The aim of this paper isto explore how longitudinal qualitative research, asa research method, could be used to explore olderpeople’s changing care needs. We reflect on the valueof the LQR approach for exploring continuity andchange at the individual and organisational levels aswell as considering its particular strengths in enablingus to identify the interconnections between thesedifferent levels. This paper focuses particularly onthe perspectives of the residents and draws on datagathered from them directly. The findings contributeto a better understanding of ageing and care as wellas providing useful information about the potential ofcare provision in specialist housing.

Rationale for the research design

A longitudinal qualitative approach was adopted as themost appropriate for an exploration of processes involvedin the giving and receiving of care through a period ofindividual and organizational change. Longitudinal quali-tative research focuses the researcher’s attention on bothindividual and social levels and the interactions betweenthese (Neale & Flowerdew, 2003). It provides a means ofunderstanding how experiences and processes changeover time (Corden & Millar, 2007a) and, as Thomson(2007) suggests, allows the researcher to explore the out-comes of changes. Consequently, LQR has particular reso-nance for policy researchers, athe “long” view offered byqualitative longitudinal research offers the possibility ofdeveloping more complex and thus realistic understand-ings of how and why individuals and communities live asthey do as well as the intended and unintended

2 A. CAMERON ET AL.

consequences of thepolicies themselves (Thomson, 2007,p. 572).

Corden and Millar (2007b) note the importance of life-course approacheswhich address the significance of timeand change, especially in periods of transition. The deci-sion to move to ECH is deeply significant in terms ofindividual ageing andmight be regarded as a major tran-sition in the lifecourse (Grenier, 2012). Moreover, ourresearch focused not only on the individual residentsbut also on the ECH schemes as organizations, whoseapproach and capacity to care is shaped by broadereconomic and political contexts. There were, therefore,interconnections between individual experiences and thelife of the organization where the research took place.

In the context of ageing and social care, the transitionsthat participants are living through can be difficult todiscuss, especially when participants are in need of per-sonal care and when their ability to manage their dailyroutines independently has diminished. A major advan-tage of LQR methods is that interviews carried out overtime promote familiarity and trust between participantand researcher and enable a researcher to raise sensitivetopics at a more opportune moment, so avoiding thepossibility of raising feelings of embarrassment thatwould be more likely in a one-off interview (Lloyd et al.,2017).

There is no accepted standard concerning thedurationof longitudinal research (Corden & Millar, 2007b). What issignificant is that there should be an expectation thatchange will occur over the timeframe selected. For thisstudy, an 18-month period for fieldwork was selectedbased on previous experience of longitudinal researchwith older people (Lloyd, et al., 2014), which suggestedthat changes in care needs would be evident among oursample within this time frame. Additionally, we expectedthat within this time frame there would be significantchanges in the social care policy and practice contextswithin which ECH operates and we were confident thatwe would be able to obtain evidence on the impact ofthese changes on the schemes in our fieldwork.

Methods

We recruited four ECH schemes to take part in the study,one of which provided specialist support to peopleliving with dementia. These schemes were based intwo areas: a unitary authority (Area 1), and a countycouncil, two-tier authority (Area 2). Each scheme wasvisited on four occasions, at six-month intervals anddata were gathered through semi-structured interviews(with residents, managers, care staff and local commis-sioners of housing and care); analysis of documents andunstructured observations. The analysis of documents,such as annual reports, provided valuable contextualinformation about organizational priorities and values.The observational data helped shape questions asked inthe interviews with residents, for example in relation to

opportunities to take part in social activities. This paperreports data gathered primarily from the interviews withresidents.

Our intention was to recruit 10 residents at eachsite and interview them four times over 18 months.Mindful of the potential for high attrition rates (Modyet al., 2008), we recruited between 12 and 15 resi-dents at each site, see Table 1 for detail. In total, 51residents took part in the first round of interviews.They ranged in age from 54 to 97 years. There wassome diversity in the ages of participants betweensites, with the majority of participants at site A beingin their 60s while the majority of participants at siteD were in their 80s or 90s. In order to reflect thediversity of existing ECH residents, we spoke to both“new” and established residents with the length oftime that participants had spent living in ECH at thepoint of our first interview ranging from one month to19 years. The majority of participants had lived in ECHfor less than two years, reflecting the fact that siteC was a newly established ECH site and site D hadrecently been extended to accommodate more resi-dents. Ten male residents and 41 female residentsparticipated in interviews. While the majority of parti-cipants were widowed (n = 22), 14 were divorced orseparated, seven were single, and eight were married.All eight participants who were married lived in ECHwith their partners. Every resident whom we spoke todisclosed some form of illness or chronic condition.Many had issues with poor mobility and/or arthritisand some had a history of mental health problems,a stroke, cancer, and/or heart problems. Despite this,19 participants reported that they did not receive anycare provision at the time of our first interview. Othersreceived care or support ranging from short “welfarecheck visits” to four prolonged visits per day. Thetable below reports how many residents took part ineach round of interviews.

Interviews in round 1 covered biographical details(including age, relationship status, and the length oftime that they had lived in their ECH scheme) as wellas residents’ reasons for moving into ECH, their parti-cipation in social activities, their social contacts, healthstatus, their care plans, their experiences of care andwhether their needs and experiences had changedover time. These interviews lasted between 20 and75 minutes with the average at approximately

Table 1. Number of completed and missing resident interviewsin each round.

Round 1 Round 2 Round 3 Round 4 All Rounds

Missing Complete(M) (C) M C M C M C M C

Site A 0 14 4 10 4 10 5 9 13 43Site B 0 12 3 9 1 11 4 8 8 40Site C 0 11 9 2 5 6 5 6 19 25Site D 0 14 0 14 0 14 0 14 0 56All Sites 0 51 16 35 10 41 14 37 40 164

INTERNATIONAL JOURNAL OF QUALITATIVE STUDIES ON HEALTH AND WELL-BEING 3

50 minutes. Subsequent interviews (rounds 2–4)explored any changes in their need for or provisionof care and the factors that lay behind any changes.These interviews were usually shorter than interviewsin round 1, lasting between 21 and 37 minutes.Analysis of data from each round yielded themesthat were followed up in subsequent rounds. Forexample, loneliness and isolation emerged as themesto be followed up and explored in greater depth. Twoof the interviewers (AC, EJ) had experience of LQRwhile the third (TA) had research experience withpeople living with dementia. After each visit theresearchers made brief fieldnotes, for example notingchanges in the activities provided for residents. Thesefieldnotes informed the analysis of interview data aswell as the subjects explored during subsequentrounds of interviews. None of the participants wasknown to the interviewers prior to the start of theresearch.

All interviews were audio recorded and transcribed infull by a university-approved transcription service or byamember of the research team. Thematic analysis of thetranscripts was led and managed by (EJ). A sample ofeight transcripts from the first round were read andindependently coded by members of the researchteam using a priori codes drawn from the literature aswell as thematic codes which emerged inductively fromthe data. Discussion of these led to the development ofthe initial coding frame which was used to code the firstround of resident interviews using NVivo software. Thecoding frame was supplemented with additional codesas they emerged inductively both during the course ofcoding and following each subsequent round of inter-views. Analysis of longitudinal qualitative data isa complex process and can be carried out both cross-sectionally, in this case considering all residents’ experi-ences at a specific moment in time, or longitudinally tounderstand each individual resident’s experiences overtime (Calman, Brunton, & Molassiotis, 2013). Data canalso be analysed thematically over time. Our approachcombined longitudinal and thematic approaches. Forexample, we analysed how an individual resident’sneeds for care changed over time and specific themesover time as they emerged. These themes included, forexample, residents’ perceptions of the resident profile oftheir schemes and changes in staffing. The themes pre-sented in this paper were chosen to illustrate the con-tribution that a longitudinal approach can make to ourunderstanding of ECH.

Ethical issues

The ethical issues faced by researchers undertakingLQR studies are, in the main, the same as those facedin any social research project, although they may beintensified because of the additional demands placedon participants’ time and attention (Corden & Millar,

2007b). In our study, the potential ethical issues weremade more complex because of the age of our resi-dent participants and their health conditions through-out the study. Ethical approval was provided by theNational Social Care Research Ethics Committee, refer-ence 15/IEC08/0047.

We visited each site to introduce the study beforebeginning fieldwork. This enabled us to explain the aimsand objectives of the study to managers and to securetheir personal support for the research. We left informa-tion sheets to be circulated to residents and staff. Anyresident who wished to participate approached theirscheme manager who organized interview dates. Werecruited approximately two- thirds of our sample ateach scheme through this approach and relied onword of mouth among residents to recruit the remain-ing participants.

Informed consent, anonymity/confidentiality and safe-guarding were all important ethical considerations. Allparticipants were informed about how data would bestored and used anonymously, as well as the limits toconfidentiality, and their written consent was given priorto the commencement of each interview. Anonymity andconfidentiality are key issues in ensuring the ethical prob-ity of research. Participants’ agreement to take part in thestudy was based on our agreement to maximize theanonymity of individuals as well as that of the ECHschemes where they lived. Given the potential for parti-cipants to reveal that they might be at risk of harm—tothemselves, or from a care worker or fellow resident—weoffered all participants limited confidentiality and devel-oped a protocol by which members of the team wouldreview and, where appropriate, report any concernsraised. On one occasion, we followed up with a residentan issue that they had spoken about to us and reportedto the schememanager as wewished tomake sure that ithad been dealt with to their satisfaction.

Asking residents to reflect on changes in their lifecircumstances can cause distress. To manage this even-tuality, we agreed that if a resident became upset duringan interviewwewould change the line of questioning orterminate the interview. Although we never had to endan interview, we did, on occasion, change the line ofquestioning when we thought participants werebecoming upset, usually in response to questionsabout loneliness but, sometimes, as they reflected onchanges in their health.

Although we wanted to include the experiences ofpeople living with dementia in ECH, we decided toinclude only those who had the capacity to consent totake part in the research. In these cases, our approachwas informed by Dewing’s (2008) five-step processconsent method. This involved considering how par-ticipants with dementia might communicate andexpress their wishes to engage in the research indistinct ways, such as through verbal and non-verbalindicators and through implied meanings rather than

4 A. CAMERON ET AL.

intellectually correct language. The process consentmethod required that we engaged with managers,care workers and/or residents’ families to establishthe usual level of wellbeing of participants withdementia and, in turn, the basis for consent for eachindividual. We monitored consent in this way on anongoing basis, both re-establishing the basis for con-sent on each of our four visits and during interviews ifit appeared that a participant’s ability to communicatehad become severely reduced. Over the course of thestudy, we determined that participating in the studywas no longer in the best interests of three partici-pants because their dementia had progressed and, inconsequence, their ability to communicate how theyfelt about engaging in the research was severelyreduced. These three participants took no furtheractive part in the study. Additionally, seven partici-pants were lost to the study. Three died, two enterednursing homes and two decided to withdraw.A further six participants were unable to take part inall four rounds of interviewing, due to ill-health orhospital stays.

Results

To illustrate how a longitudinal design informs ourunderstanding of ECH, we present below data addres-sing our first objective in three key themes, which relateto the experiences of residents: the changing care needsof residents; residents’ perspectives on the mix of resi-dents in ECH schemes where they lived, and residents’perspectives on organizational changes.

Changing care needs

Over the course of the study, 13 out of the total sampleof 51 residents reported that their care or support needshad changed, such that the total number of hours ofcare which they received had increased or decreased,either on a temporary or permanent basis. For example,at site D, resident D4 [aged 75] reported at our first visitin January 2016 that having recently recovered froma fall she had stopped receiving the temporary addi-tional care which began following her fall. She said:

I needed help then and they were brilliant then, butI had to go to hospital in the end. … then I came outof hospital and they [care staff] helped me again fora little while but now I’m able to do things for myselfbut I will need them again because me leg is get-ting… I’ve had ulcers on my leg and I’m going toneed someone to help me with stockings.

During our second and third visit, the same residenttold us that she was still managing without any“extra” care. However, by the time of our final visitin the spring of 2017, her health had deteriorated andshe was receiving care on a permanent basis to:

put a stocking on for me because I can’t do thatmyself. I can take it off and you know cream my legand everything but I can’t get the stocking on. Sothey come in and do that but that’s the only care I getreally.

At site B, resident B2 [aged 97, with heart problemsand receiving chemotherapy for lymphoma] told uson our first visit that she didn’t receive any care orsupport, she said “Whatever I do, I do myself.” By thetime of our second visit, however, the picture hadchanged and she told us:

I used to do everything myself and now I’ve got myniece doing my washing and just tidying up roundhere for me so I haven’t got that to do and I’ve gota carer come in every night at six o’clock to see if I’malright but it’s foreign to me you see because I usedto do everything myself. I just can’t do it. I just haven’tgot the energy.

The idea of having a daily visit from a care worker wassuggested to resident B2 by her general practitioner,who suggested that care workers visited her everyevening. At this stage, she was also being visited bya district nurse. During our third interview, resident B2told us that she had “sacked” the care worker aftera matter of weeks, resisting the need for a daily visit,and had told the scheme manager “I don’t want themanymore and I didn’t have them anymore.” At thetime of our fourth and final visit to site B, this residenthad moved into a nursing home following a furtherdecline in health.

A small number of residents at the specialistdementia scheme, site C, also told us about theirchanging care needs. During our first round of inter-views, resident C11 [92 years old] told us “I’m alrightat the moment the way I go on. I mean there willcome a time when I shall need more care and I shallhave to pay more you know, fair enough.” By ourfourth visit, resident C11 told us “everything’s chan-ged”, she said:

now the carers have to do the cleaning and I pay forhalf an hour’s cleaning, £8.00, and that’s been hap-pening about the last three or four weeks, but they’rehere for ten minutes … well unless I stand over them,I’m about to grumble about paying for that.

The majority of residents from the four schemes whotook part in the study received care and support fromthe on-site care team but six residents told us thatthey had chosen to receive all, or part of, their careand support from an alternative provider. While thesearrangements remained in place for most residents,a small number of participants reported that they hadchanged providers over the course of the study. Atsite A, resident A1 [aged 57, with epilepsy anda history of heart attacks and strokes] received careand support from the on-site team as well as from anindependent agency, who cleaned her flat. During her

INTERNATIONAL JOURNAL OF QUALITATIVE STUDIES ON HEALTH AND WELL-BEING 5

first interview, she told us that she had recently beenin hospital and that, on her return, she had hadregular visits from the on-site carers who would popin “to check on me and then they’d ring me and askme if I was alright on the phone and if I wasn’t wellI just had to press the buzzer.” During her third inter-view, she told us that she continued to have four visitsa day from the on-site care team to help her withadministering medication but that she had recentlydecided to discontinue support visits from the exter-nal agency, inferring that the service was expensiveand deciding that, given her improved health, shewould clean her flat herself. She said:

I don’t have my cleaning done no more because theycharge £12 for washing and other things. I couldn’tdo it before, but I am moving my legs and my backa bit. I know they are going to give me some steroidsin my back and give me a course of things to do soI don’t mind doing my own [cleaning]. So I got onwith doing things. If I can I do it.

In this sense, taking a longitudinal approach allowedus to demonstrate how some residents decided tomanage how their changing care and support needswere responded to and by whom. Residents gavea number of reasons for making changes to the tim-ing, content, and/or provider of their care and sup-port. While, most often, these changes were born outof a change in the nature or degree of a resident’scare needs, other residents described making changesdue to the costs of care or support (resident A1), thepoor quality of care provided by an external agency(resident A6), or because the on-site care team wouldnot be able to provide the specialized support whichwas required, such as counselling (resident B4).

The changing mix of residents

In common with previous research on ECH (Callaghan,Netten, & Darton, 2009; West, Shaw, Hagger, & Holland,2017), the changing mixture of residents living in ECHwas a topic that most participants talked about. Many ofthe participants at sites A, B and D thought that newresidents were moving into ECH with higher and morecomplex needs than they had done previously. Theseperspectives were borne out in an interview with a localcommissioner of housing with care in sites A and B. Thiscommissioner told us that the local authority hadrecently decided to change their practice so that, to beeligible for a publicly funded place in ECH, an individualmust be in need of a minimum of five hours of care perweek. Although this change in practice is not uncom-mon (see Wright et al., 2010), our LQR approach wasable to capture its unintended consequences on theeveryday experiences of residents living in ECH.

At our first visit to site B, resident B5 [aged89 years] told us that she had moved in 12 years

ago, at the same time as four other people from thesame estate where she had lived, which was due to bedemolished. She described how, alongside these fourindividuals, she had formed a residents’ committeeand organized events:

We had holidays away, sort of [name of place] andplaces. No, it was a very full life when I came herefirst … but then of course it petered out gradually,because as I said, we’re all getting older and thingsbecame more difficult for people.

Also during her first interview, resident B5 describedhow, although there were still activities organized forresidents, fewer people attended these. She attribu-ted this poor attendance partly to the death of heroriginal group of friends but, also, to her perceptionthat there was an increased number of residents atsite B who had dementia. She said that these resi-dents “don’t take part … we don’t get any new facesbecause they seem to want to stay in their flats.”Similar findings have been highlighted in other stu-dies (see West et al., 2017).

The picture had changed a little at the time ofour second interview with resident B5, who notedthat, although it was “a different set up to whenI came,” two new residents had recently moved in,both of whom attended activities:

and they’re a boon because they are a lot youngerand you know, sort of with their ideas and that, butthat’s good, that’s good, but until then it was thesame people all the time.

By our third visit to site B, there were new organizedactivities, partly at the behest of the new youngerresidents, with the result that these events weremore vibrant and more residents took part, residentB5 noted:

We’ve had some younger people come in, big differ-ence, you know but they seem to join in, more sothan the older ones that come in … So yes, we gotquite a few groups of things … So there’s somethinggoing on most days.

The increase in organized social activities clearly hada positive impact on resident B5’s wellbeing, shenoted, “so my time’s really filled. I’m so pleasedabout it really… Yes, so I’m not moping or anythinglike that. I got plenty to do and see, so I don’t knowwhere the time goes sometimes.”

So, although all new publicly funded residents atsite B were now required to have care needs, somenew residents at the scheme were younger than exist-ing residents which, for resident B5, had positivelyaffected the scheme’s community. Adoptinga longitudinal approach allowed us to explore howthe residents’ relationships and social life within thefour sites waxed and waned over time and affectedindividual residents’ wellbeing.

6 A. CAMERON ET AL.

Participants from across the four sites reflected ontheir changing relationships with other residents.Some focused on their experiences of moving intoECH and meeting new neighbours. At site D, a newextension had opened shortly before our researchbegan and an influx of newer residents had an impacton social relationships. At the first round, resident D8[aged 87 and had lived in ECH for eight months] toldus he did not know many of the well-establishedresidents, but he had come to know some of thosewho had recently moved in who were “possibly a bityounger overall and I’m very young in my ways.” Atour second visit, resident D8 told us:

It’s always a bit hard work when you first come toa place you don’t know anybody and I think I said lasttime it’s the new people I’ve got friendly with ratherthan the people who have been here a long time.They tend to stick to themselves, their little groupswhen they’re eating and so on and I never manage tomerge with any of them when I’ve tried sitting ondifferent tables and didn’t get much of a response,but I’ve done much better with people that moved inat the same time as I did.

By our third visit this resident thought that integrationbetween residents living in the new and older parts ofthe scheme had improved. He went on to describethat the problems of integration were accentuated bythe layout of the building, with the new apartmentsquite a long way from the main social spaces but healso said “I think there’s partly an age thing in it. Mostof the new people are probably a bit younger thanthe ones who’ve been here a long time, and they’vegot more energy to do things.”

Organisational changes

The impact of changes in the wider national and localpolicy contexts was evident in the data we obtainedfrom interviews. For example, residents and staffreferred to the higher levels of need of incomingresidents, reinforcing evidence from previous studiesof ECH and residential care homes (see for exampleWest et al., 2017). Policies in England have tended toemphasize keeping people in their own homes for aslong as possible and this has led to higher levels ofdisability among care home residents. At the sametime, there has been a knock-on effect on ECH,which now accepts fewer people who are able tomanage with minimal levels of care and support. Asour LQR approach was able to highlight, such devel-opments have an impact on the experiences of resi-dents living in ECH.

Organizational changes were evident at all foursites and, not surprisingly, residents reflected uponthese changes over the course of the study. The long-itudinal nature of the study enabled us to follow

participants’ feelings over time, capturing howchange was unsettling for many residents. As in pre-vious research (Netten, Darton, Bäumker, & Callaghan,2011), in three of the sites new managers and careworkers were appointed and residents talked abouttheir feelings as they anticipated and lived throughthese changes. When we first visited site A, the man-ager had been in post for less than one year andresidents felt that she was still finding her feet, withseveral remarking that she wasn’t very communicativeor receptive to suggestions from residents. By thetime of our second round of interviews, site A’s man-ager had left and a new manager had beenappointed. Residents were hopeful that this new man-ager would be more approachable than her predeces-sor and listen to their complaints, one of whichconcerned a lack of social activities. Resident A5, forexample, said:

I hope the new manager is going to be a bit betterthan the old one, because the old one wasn’t muchwith us… But this one seems to be, she come and satwith us a couple of times and I’ve chatted with her.And I hope she’s going to pick up the complaintswe got.

During our third visit to site A, resident A5 said“[name of manager] is trying hard to get thingsgoing.” The new manager had begun arrangingevents, such as a Halloween party, and there wastalk of a new “activities champion” being appointed.At our final visit, resident A5 said:

When you’ve got three different managers in a shorttime you’ve got to go with the flow as I say, you knowlike I’ve got to get used to her and she’s got to getused to us like. She’s different. Totally different butshe is doing big changes to the building and she’sbrightening things up. I admire her for that.

Changes in management could prove very unsettlingfor ECH residents, particularly when managers hadbeen in post for a long time and were well regarded.During our third visit to site D we learnt that themanager, who had been in post for several yearsand was very popular among residents for her friend-liness and professionalism, was leaving. Anticipatingthis change was troubling for many residents. Asresident D12 said “We are losing [name] of course,she’s leaving at the end of the year. I shall miss herbecause with [name] as a manager your problem isher problem.” Resident D1, who had been living in thescheme for just over a year by that stage, was veryapprehensive, she said:

I dread her going. It’s very unsettling when some ofthe main people you know go … It’s just not like justsort of one of the carers or one of the cleaners orsomeone like that going. But when it’s one of themanagers who’s the head of this place … then it canmake a lot of difference to a place can’t it?

INTERNATIONAL JOURNAL OF QUALITATIVE STUDIES ON HEALTH AND WELL-BEING 7

At our final visit, site D’s new manager was settling in,but residents were finding it hard to get used to herand were inevitably making comparisons between herand her predecessor. For example, resident D5 said“She doesn’t speak to anyone, and we are all com-plaining … she won’t even say good morning, goodafternoon, she’ll walk straight by you.”

At sites A, C, and D, it was changes in managementthat prompted residents to reflect on the importanceof certain managerial practices and styles in promot-ing positive experiences of ECH. Similar commentswere made by residents in relation to care staff at allsites. Our ability to gather this important data withregard to the impact of staff changes on residents’experiences of ECH was greatly enhanced by the LQRmethod. A single round of interviews at theseschemes would not have yielded such detailed insightinto how managerial approaches and organizationalchanges impact upon residents’ experiences of ECH.

Discussion

This study differs from previous studies of ECH in thatthe LQR design enhanced our understanding of howresidents’ health and needs for care fluctuated overan 18-month period. Additionally, we were able toexplore how their experiences of living in ECH chan-ged during this time, including the impact of changesin the organizational context. The findings of thisstudy reflect the precarious position that older peopleare in when their need for care and support increasesand how practices of care can either exacerbatea sense of precariousness or provide a sense of secur-ity (Grenier, Lloyd and Phillipson, 2017). The findingsalso demonstrate how changes in local ECH eligibilitypolicy were impacting not just on the mix of residentsbut also on their experience of communal life. Indeed,the findings from this study suggest that contempor-ary conditions make it harder to promote a sense ofsecurity in ECH.

Using a LQR approach allowed us to explore howflexible care and support services were in practice. Wewere able to demonstrate how changes in need for careand support, on a temporary or permanent basis, wereresponded to. Across the study, residents were appre-ciative of ECH’s flexibility, indeed it was often the reasonwhy they chose to enter ECH in the first place. In addi-tion, our LQR approach allowed us to explore the waysin which some residents proactively managed the careand support they received. For example, choosing tostop having additional support to clean their apartmentin favour of having more care or making the decision toend their contract with an external agency in favour ofusing the on-site care team. In this sense, we got amuchbetter appreciation of how care needs are negotiatedand responded to within ECH over time.

Like all social settings, ECH schemes are not staticentities and our study was able to explore the perceivedimpact of some organizational changes that happenedduring our fieldwork. For example, resident interviewsexplored some of the tensions resulting from the chan-ging nature of the “balance of care” within ECH.Significantly, we were able to explore residents’ percep-tions of the impact which new residents, often withhigher and more complex needs, had upon the com-munal life of the schemes.

Over the course of the 18-month study, partici-pants placed an increasing emphasis on howchanges in resident mix had impacted upon partici-pation in social activities. Like previous research(Shaw et al., 2016), this study illustrates the signifi-cance attached to the social activities organized forresidents within ECH settings. It also demonstrateshow changes in the frequency of social activitiesoften reflect changes to the organizational context,for example the availability of funding to supportactivities, the availability of someone to organizeevents and whether there are residents willing andable to take part in them. Additionally, examiningthe perspectives of residents longitudinally revealedthat relationships between residents in ECH taketime to build, as they do in any setting. New resi-dents, with or without care needs, may require timeto adjust to their new environments before theyengage with social activities. Many residents alsoexperience the loss of friendships as their neighboursmove to other settings, become unwell, or die. Thesechanges demonstrate the significance of a lifecourseapproach to understanding friendships, both the lossof old friends as well as the advent of new friend-ships. Taken together, these factors suggest that,over time, the nature of social life within ECH ebbsand flows and that these changes are part of the“life” of ECH. Consequently, there is a need fordynamic management within ECH, including thecapacity for managers to intervene at specificmoments to bolster social activities and/or networks,particularly during periods when the resident mixhas changed. Our findings also suggest that there isa need for managers to ensure that new residents, aswell as existing residents, have a “realistic picture ofthe diversity of need that is being catered for andperiodically reminding existing residents of that fact”(West et al., 2017, p. 1889).

Methodological considerations

While this study demonstrates the value that LQR canbring to research in social care settings, we did encoun-ter some challenges. For example, at the specialistdementia setting, not only did we struggle to recruitsufficient residents who were able to communicatetheir consent to take part in the research but, over the

8 A. CAMERON ET AL.

course of the interviews, three residents were with-drawn from the study due to an inability to commu-nicate that they wanted to take part, two died and onechose to withdraw. In addition, the quality of qualitativedata collected in interviews with the remaining partici-pants in this setting diminished over successive rounds,leading the interviewers to adopt a more informal styleof interview, focusing on key questions as a means toenhance engagement while reducing any potentialburden. These challenges do not negate the impor-tance of using LQR with people who have dementiabut, rather, suggest the need for reflexivity, flexibility,adequate resources and innovation on the part ofresearchers (McKeown, Clarke, Ingleton, & Repper,2010) as well as the need for continuous engagementwith managers, care workers and/or families to estab-lish participants’ usual level of wellbeing and, in turn,their basis for consent (Dewing, 2008).

As in previous studies, the ongoing relationship builtup between participants and individual researchers dur-ing a longitudinal study presented some ethical chal-lenges (Calman et al., 2013). Building rapport is key toany research encounter but, in LQR particularly, there isa fine balance between building a sufficiently trustingrelationship that supports repeat in-depth interviewsand participants mistaking the research encounter forongoing friendship. In this study, we kept in contactwith participants between interviews by sendinga thank you card and/or a Christmas card to each partici-pant after each round and kept in email contactwith eachscheme, but we did notmake contact with participants inany other way. Additionally, the ending of LQR has to benegotiated sensitively. In our final interviews, wereminded participants that this was the last time that wewould be speaking to them individually, although wewould return to the scheme to tell them what wefound out.

Finally, Thomson reminds us of the significance of“perspective” in our analysis of longitudinal data and“the lack of analytic closure and the significance of theposition in time and space fromwhere the interpretationof a particular case is made” (Thomson, 2007, p. 572).This is an important reminder that, in our efforts to fullyunderstand ECH, we must be reflexive about how ourparticipants’ accounts and, likewise, our own interpreta-tions of them are situated in a particular context. This is,perhaps, more pertinent given that this piece of LQRtook place during a period of relentless economic andpolitical pressure on adult social care and an increasingdemand on health and care services. While these pres-sures may well have affected the experiences of indivi-dual residents, they also had an impact on theorganizational context, particularly in those schemesthat were home to a high number of publicly fundedresidents. Using an LQR approach allowed us to explorehow these changes impacted upon the experiences andperspectives of residents over time.

Conclusion

This paper used data collected across four rounds ofinterviews with older people living in ECH to illustratethe benefits of using a LQR approach to understandresidents’ own experiences of their changing careneeds, as well as their experiences of changes withinthe schemes in which they lived. The approach was notwithout difficulty, particularly in respect of its use withpeople living with dementia, as well as in terms of themanagement of boundaries in the relationships built upwith individual participants. However, despite these chal-lenges, this paper demonstrates the detailed nature ofthe longitudinal data which we collected: data that sup-ports a more nuanced understanding of the experiencesof residents living in ECH. Using LQR techniques hassupported the emergence of a more dynamic picture ofECH which complements and reinforces existing litera-ture in this field.

Disclosure statement

This article presents independent research funded by theNIHR School for Social Care Research. The viewsexpressed in this publication are those of the authorsand not necessarily those of the NIHR School for SocialCare Research or the Department of Health and SocialCare, NIHR or NHS.

Funding

This work was supported by the National Institute for HealthResearch, School for Social Care Research [CO88/CM/UBDA-P73];

Notes on contributors

Ailsa Cameron is a senior lecturer in the School for PolicyStudies, University of Bristol and a member of the Centre forResearch in Health and Social Care. Her research interestsare in social care research, ageing, housing and the integra-tion of services.

Eleanor K Johnson is a senior research associate in theSchool for Policy Studies, University of Bristol and a memberof the Centre for Research in Health and Social Care. Herresearch interests are in social care research, care work andageing.

Liz Lloyd is a professor of Social Gerontology in the Schoolfor Policy Studies, University of Bristol and a member of theCentre for Research in Health and Social Care. Her researchinterests are in ageing, health and social care policies andpractices and the ethics of care.

Simon Evans is a principal research fellow at the Associationfor Dementia Studies, University of Worcestershire. Hisresearch interests include dementia, ageing, housing, healthand social care, care homes, and communities.

Randall Smith is a senior research fellow in the School forPolicy Studies, University of Bristol and a member of theCentre for Research in Health and Social Care. His research

INTERNATIONAL JOURNAL OF QUALITATIVE STUDIES ON HEALTH AND WELL-BEING 9

interests are in the policies and practices related to ageing,social care and housing.

Jeremy Porteus is the director of the Housing Learning andImprovement Network (LIN), a network for the promotion ofinnovative housing solutions for an ageing population.

Robin Darton is a senior research fellow at the PSSRU at theUniversity of Kent. His research interest include housing,care homes and health and social services provision forolder people.

Teresa Atkinson is a senior research fellow in the Associationfor Dementia Studies, University of Worcestershire. Herresearch interests are in understanding the lived experiencesof people affected by cognitive impairment

ORCIDAilsa Cameron http://orcid.org/0000-0003-0201-0993Eleanor K. Johnson http://orcid.org/0000-0003-0968-3859Liz Lloyd http://orcid.org/0000-0002-9624-9614Simon Evans http://orcid.org/0000-0002-2919-8167Randall Smith http://orcid.org/0000-0002-7997-5104Robin Darton http://orcid.org/0000-0002-8242-790XTeresa Atkinson http://orcid.org/0000-0003-2020-7239

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