From 45 homes recruited to the DACHA study,(17) twenty-seven care homes (60%) were represented in focus groups, of which ten homes were represented in both waves. Twenty-four staff representing 22 homes participated in five W1 focus groups (Table 2). Groups included between two and nine participants, grouped according to care home type (e.g. single/multiple care home providers) or staff role. Sixteen senior staff representing 15 homes participated in four W2 focus groups (Table 2). Groups included between two and six participants. A further 25 interested individuals (13 and 12 from W1 and W2 respectively) cancelled due to unforeseen commitments within their care home.
Table 2
Summary of care home staff participant characteristics per wave
| Wave 1 Five focus groups 24 participants | Wave 2 Four focus groups 16 participants |
| Number of participants (%) | Number of participants (%) |
Sex Female Male | 22 (91.7) 2 (8.3) | 16 (100.0) 0 |
Age group 21–30 years 31–40 years 41–50 years 51–60 years 60 years and over | 2 (8.3) 10 (41.7) 6 (25.0) 3 (12.5) 3 (12.5) | 2 (12.5) 8 (50.0) 3 (18.8) 3 (18.8) 0 |
Ethnicity White ethnic group Asian/Asian British Black/Black British Other ethnic group | 15 (62.5) 7 (29.2) 0 2 (8.3) | 12 (75.0) 1 (6.3) 1 (6.3) 2 (12.5) |
Years in workplace Mean [Standard Deviation] | 3.7 [3.5] | 3.7 [5.8] |
Job title Care home manager/director Deputy manager Registered nurse Activities co-ordinator Administrator Senior care assistant Team lead Clinical service manager | 13 (54.2) 4 (16.7) 3 (12.5) 1 (4.2) 2 (8.3) 1 (4.2) 0 0 | 9 (56.3) 4 (25.0) 0 1 (6.3) 0 0 1 (6.3) 1 (6.3) |
Ten ICS participants from two of the three study regions participated in three individual interviews and one focus group.
While many managers volunteered their homes’ involvement, in larger chains, participation could be determined by senior staff working remotely from the home, which may have influenced within home engagement in data collection. Some managers, new to post, inherited a decision to participate from a predecessor. In these situations, researchers provided additional support to explain and promote the study and stress participation was an individual’s choice.
The additional measures added to the DCR were not routinely collected and represented new work for care home staff to input. Experience of completing the additional measures ranged from the home manager completing them for all residents, to named staff members being allocated the task, taking account of concerns including workload, consistency of approach and accuracy.
The presentation of an example MDS output to ICS participant interviews and focus group enabled active engagement, interpretation and reflection and peer-peer interaction within the focus groups that went beyond ICS participants’ experience, predominantly, of working with care homes to resolve concerns or difficulties in care provision.
Three main themes were developed from the data concerning professional perspectives on implementation and use of data from the pilot MDS: care home context and the importance of an MDS for care; appropriateness and relevance of QoL measures to resident care; and MDS data quality and purpose of data collection (see Fig. 1).
Care home context and the importance of an MDS for care
Care home staff operated against a backdrop of workforce pressures and rapid post pandemic change towards digitalisation and reporting. Care homes from one chain had introduced new DCR Software in the year leading up to the research project. Comments to the research team suggested that for some staff completing the MDS was affected by how familiar they were using DCR. Staff turnover during the study period influenced uptake, for example, when managers and/or staff members co-ordinating study involvement in some of the homes changed. This affected how the MDS was prioritised. The most marked example was that a large corporate chain of care homes withdrew from the study because of a change in ownership and changes in how their DCR software was implemented. Elsewhere, completion was influenced by the equipment, digital literacy, and the culture of how residents’ needs were documented for example, if DCRs were the basis for staff handovers and discussion of residents’ needs. This staff member from the outset could anticipate how the MDS would be incorporated into the routine of the care home:
…I think if it was to be rolled out, it would just get included in the monthly review of the care plans. It wouldn't be our nurses saying, well, I'm not doing that bit, it would actually form part of the monthly or the review of the care plan (Deputy Manager 4, W1 Focus Group)
Unsurprisingly, staff accounts reflected an overlay between the experience of implementing the care home part of the MDS, and the experience of being involved in a research study. There was willingness to support the research, but without mandate or additional resources for staff time, even with researcher support, managers had to prioritise front line care. These, to an extent, reflect the wider experience of conducting research in care homes, but also reflect the challenges that would accompany MDS implementation in real life. For those who did persevere and became familiar with the format the inputting required was considered to be simple. It was an artefact of the study timeline that to ensure comparable and meaningful data were extracted for all participating residents, homes needed to collect, collate, and enter additional measures within a month. One participant noted that if collecting these measures became routine, completion could be spread out and more manageable.
It was just the fact that we were getting so much information in a short space of time. If it was somebody moving into the home, you'd be doing that set of questions with them and then reviewing it every month on more of a one-to-one basis. Rather than it being like right, I need all 30 people to answer these questions now (Manager 18, W2 Focus Group)
If data capture became routine, and data were entered contemporaneously, then care home staff saw the possibility that data could inform resident care planning forming a positive-feedback loop. Staff would be motivated by the available data and the ways in which it had helped them to deliver and improve care. This, in turn, would lead staff to emphasise the importance of data entry as part of their wider routine. However, this was threatened by the specification and availability of digital and handheld devices and the accessibility of residents’ data. Some of the additional measures were too detailed for a small screen and required a desktop computer. Desktops, meanwhile, were limited in number, sometimes in places away from direct care and could be used by multiple staff for different competing activities. The ability to access information and data when needed during care delivery was suggested as a likely reinforcer of completion if an MDS became routine – but only if these issues of data accessibility and device availability were addressed:
Hopefully, by having easier access to information and quicker access, rather than having to kind of ring round the houses to find out information that hopefully would, you know, you could just log on to a system and see there. (Manager 5, W1 Focus Group)
There were wider concerns about how the sector could address worries about knowledge, skills, and confidence of care home staff, ensuring staff were equipped to administer the care home element of the MDS. Training was seen as one way to address this:
A bit more teaching of how to use the information, how to extract the information.....And then hopefully getting them to understand it's not a foreign concept and yes, it can be adopted, or adapted in care homes I should say. (Manager 18, W2 Focus Group)
The number of residents lacking mental capacity placed pressure on how resident data were collected and who was accountable. Managers and staff felt responsible for making decisions in residents’ best interests and ensuring 'the right people' were involved. This seemed to be a particular concern regarding QoL measures with staff acting as a resident proxy. There were two issues: whether these fitted with their understanding of how to represent the resident; and staff confidence completing new measures. In some cases, this related to the quantitative nature of the data. Thinking ahead, this manager could see staff would need support as part of phased implementation:
You know, some of the decisions we’re inputting, it has to be clear we’re inputting as a best interest rather than the individual.....So it is more of our views, the relative view, and it's really, unless they have a full mental capacity that it's quite difficult to capture that. (Manager 8, W1 Focus Group)
So, I think everyone at the start will be nervous about it …. anytime I throw numbers, even if they have to do observations, they’re like oh, oh I'm not sure. So, you would have to really take small steps introducing it. (Manager 18, W2 Focus Group)
Appropriateness and relevance of QoL measures to resident care
Care home staff highlighted that QoL measure content directly affected their completion and use, especially the perceived appropriateness of some QoL items, whether they felt it possible to quantify QoL, and whether and how staff should or could address the domains included.
Though the pilot did not recruit residents considered to be at the end-of-life, concerns about the appropriateness of asking older or unwell residents about their QoL were shared. This raised an important issue around which measures are collected and when, given the short time that many people spend living in care homes. Whether carers felt they could or should respond to QoL domains influenced staff engagement with the MDS. One participant was uncomfortable about the ICECAP-O item on love and friendship and its measurability. Appropriateness was challenged, whilst they accepted, they were responsible for enjoyment (another ICECAP-O item), they questioned if ensuring love should be care homes’ responsibility:
The group of people we look after are of a very old age with a lot of end-of-life care here and sometimes it can feel a bit inappropriate to ask these questions as well, like how do you feel? Well, how do you want me to feel, I'm dying [laugh]. (Manager 6, W1 Focus Group)
I found it's quite hard to measure love. That might just be how someone feels and that, affected by whether they've got family, whether they've got a good relationship with their family and things like that. Enjoyment sort of feels like it's more our responsibility, if that makes sense. (Manager 17, W2 Focus Group)
ICS participants highlighted wider influences when interpreting data on QoL of residents which need to be considered. They recognised the value of reframing care to focus on the person, their individual needs and perspectives, bringing in concepts of person- and relationship-centred care. For example, enabling homes to evidence the rationale for care plans that reinforced positive risk taking and acknowledging what they can and cannot influence such as how someone feels about being in a care home.
Care home staff reflected how some questions, such as the ICECAP-O item ‘thinking about the future’, could trigger different ways of discussing care by prompting conversations about the future not solely about preferences and priorities for end of life. It encouraged staff to consider what could be done to improve QoL for residents in the present:
that person’s dignity, their control over their life, safety, it [the QoL measure] all presumes that that comes from the care home. But actually, we [ICS commissioners] know that there are multiple factors that impact on a person's safety and risk taking…....we've got to see people as that holistic being, with multiple factors impacting on them. (ICS participant 3, Focus Group)
If I'm honest in terms of a care home, future planning and future preparing, all we do is look at what people's wishes are at the end of their life......There's not as much that we do in terms of well actually, what do you want to do.....So yeah, shines a bit of a light on how we can look at that differently. (Manager 17, W2 Focus Group)
Believing data could impact on residents QoL was seen as key facilitator towards completion – triangulating with the point made earlier about positive feedback loops inspiring data completion. This was also the case where data informed care home teams ideas about what they were good at, and where further training and staff development were needed.
....maybe if it’s something you had on a monthly basis, you'd be able to then look ahead and say right, well, we've got this training planned, is there something that we need to add in because this has all of a sudden shot up? (Manager 7, W2 Focus Group)
Several care home participants discussed how QoL measures fostered a wider view of care beyond medical or physical needs, or environment. Care home participants suggested that QoL measures, ASCOT-Proxy in particular, not only provided a more structured in-depth account of residents’ lives but could also facilitate person-centred approaches to care that enhanced their care work involving staff and providing opportunities for family and friends to contribute:
.....we can sit with them and discuss things with them that we wouldn't normally discuss with them. The care plans, on a whole are becoming so person centred it warms my heart. Our residents are getting much, much better looked after, and this is all because of the DACHA study.... It's changed the way I look at things, and I'm sure if CQC comes out we’ll be able to say to them, look, we've been involved in this study and we've noticed that this has improved our level of care, and the input from our residents and their families
It would definitely contribute to the evidence that we would be providing to CQC to say what we do is outstanding. It's definitely what we would use. Because a lot in (Software name) as well, all the risk assessments and stuff that we already do on there are very, very clinical. It's all based on how someone, how your body works, that's what it is. And so....adding all of these additional things in, we're looking at people holistically, it’s so person centred, it's beautiful. (Manager 16 and Manager 17, W2 Focus Group)
There was evidence that participating homes used the QoL data to inform changes in practice. Some participants were hopeful that continued use could positively impact residents’ lives. They recognised the process did not necessarily lead to “answers” but triggered important conversations. Part of this was that QoL data could present details about how residents regarded their lives, or day-to-day care, that care home staff found distressing, but that they also found it important to hear to deliver care that met residents’ needs.
This is quite heart breaking for me in the setting that I work in, quite devastating. How do you feel about your future, when someone can't remember what day of the week it…..it's great that we are capturing what's important to people, but this was quite difficult. (Manager 4, W1 Focus Group)
Balanced against these views was the sense, for some participants that quantitative summaries of QoL were reductive and driven more by measurement than care concerns. For participants who espoused these views, they couldn’t cite examples from their own care homes where QoL data had facilitated reflection or improvement. It is not clear the extent to which negative baseline views about QoL measures cultivated disengagement, or whether these staff had tried to work with the measures and found them of limited use in practice.
MDS data quality and purpose of data collection
Care home and ICS participants recognised the importance of data quality, as it would influence uptake and data use. Care staff are expected to deliver care and it is a role that carries much responsibility. Managers expressed concerns over the expectations being placed on a low-paid workforce:
you want all that accurate data straight away. But I mean this with no disrespect to absolutely anybody, we employ an unskilled labour force that are being paid minimum wage, and yet we want the highest of standards in the most regulated industry that I know of. (Manager 11, W1 Focus Group)
There was an extended discussion between ICS participants that they needed to be more trusting, recognising that their opinions were often prejudiced by having to focus on the (minority) of care homes who were not performing well. This related to two areas of data collection, reporting on residents’ unmet need and the use of proxy assessments.
For some ICS participants, what emerged was a belief that care homes and their staff were likely to be biased in their reporting. They wondered if care home staff might feel exposed by highlighting unmet needs and be tempted to frame data entry in a way that portrayed care in the home in a positive light. This was based largely upon supposition and no respondents gave examples where care homes had done this in the past.
... it's going to reflect on the overall care of the care home. So, part of me would be questioning the validity of the data from the care staff who've completed it. You're not going to want to say that they've got safety unmet needs in a care home necessarily. (ICS participant 1, Interview)
The ICS focus groups also expressed concerns about using proxies to understand QoL, with a preference for measures based on resident self-report QoL, exposing a lack of understanding about care home residents’ capacity to complete such measures. Balanced against this was a recognition that data about care home residents’ lives, experiences and QoL are scarce. Proxy data are better than the current inability to meaningfully describe these:
It’s not like we're not trusting them or not that we think that they're fudging the data or the results. I just don't understand how you can make that analysis of somebody else's quality of life.....Even if you ask my partner, my family, what they would say, and the answers they would give would be different to what I would give. (ICS participant 8, Focus Group)
QoL metrics....are something that are lacking within datasets, not just in care homes, I think generally across data that we collect. So, I think this is very welcome. (ICS participant 9, Interview)
Care home staff shared this sense that proxies somehow fell short of the aspiration of individualised person-centered care. There were examples of staff despite being asked to complete QoL measures in a resident-proxy format, describing how they would engage in additional conversations with residents to try and validate their interpretation of the measures.
Despite ICS participants’ concerns around data accuracy, they were able to propose ways data could add value to care. An example around aggregating resident level data to describe the health of the local care home population, and how they used hospitals services over time, illustrated how an MDS could support wider ICS work on population health, resource use and trends. Both care home and ICS participants understood that an MDS has different purposes for different people. For care home representatives, a secondary use of the data could be to evidence their interactions with other parts of the health and social care system. For example, data from the MDS could demonstrate a care home requires more support from visiting health services. These two quotes from an ICS and care home staff participant respectively, demonstrate how aggregate data could inform service review:
I think most ICSs are doing, is looking at population health management. So, this isn't about necessarily tackling individual residents and the issues that they face, but it's looking at care homes. And actually, are there clusters of care homes, and a lot of them are provided by the same provider for instance, or in the same patch, or they have the same GP linked to them, for instance. (ICS participant 9, Interview)
...that could be a possibility, to start the conversation with your local authority, CCG to actually identify that there is a lack here, the GP is not supporting.....We can have a conversation and evidence to say that this is the problem comparatively. You know, our home is not receiving the sufficient support, so is there anything that you can actually bring us, give us, something along those lines, yeah. (Manager 9, W2 Focus Group)
Both care home and ICS participants said that care homes would want to use data to show regulators how well they supported residents, supporting the case their home provided outstanding care:
It's really hard to say what you do and how you do it and be able to prove that. ... I'm thinking for the homes and the workforce in that home, to be able to go and say actually we do a really good job. Our score reflects that we are good at what we do. (ICS participant 5, Focus Group)
Using data outside of care homes to create national and local averages would, according to ICS participants, enable benchmarking against other providers. It was hoped this could stimulate “a bit of healthy competition” (ICS participant 9, Interview) and improve performance across the sector. Other ICS participants suggested that QoL could be seen as a marker of care quality and used by the public to value care homes.
If [MDS data] went to the public domain......to say that they've got a two [for] QoL or whatever. Then actually, I'd look at CQC rating and it’d be good to have that as well.....So, I think we do compare at the minute just on that ratings and I think it would be good to understand, to have a QoL [score] would be great for all of us. (ICS participant 3, Focus Group)
There was discussion of using MDS data to sanction or motivate care homes. The data were attractive to ICSs who were considering how to support quality in their regions. A focus on quality improvement, however, was defined more negatively as “scrutiny” by another ICS participant (ICS participant 4, Focus Group) demonstrating how underlying beliefs and assumptions about the role of ICS when working with care homes could affect how MDS findings are perceived.
There were contrasting views about if the data should be widely available. Using data to make judgements without understanding the context of care or the variation of provision was a recurring concern for some care home participants:
I think if it's freely available, I think that's not really good. I think if you're able to take different aspects of it to use to promote or develop your care and things, that's fine. But not for all and sundry to have full access to everything, because it's judgments again, isn't it? It's making those judgments on the different areas, different homes. (Manager 15, W2 Focus Group)