Round up for December 2019
Supporting the Focus on Dementia Portfolio
Welcome to the latest roundup about our key learnings from research and evaluation for quality improvement and implementation in health and social care. In this issue, we focus on the Evidence and Evaluation for Improvement Team’s (EEvIT) work supporting one of the ihub’s portfolios, Focus on Dementia.
Embedding evaluation in design
The Focus on Dementia team routinely involve EEvIT in planning their improvement work, and as a result we can often contribute at an early stage. A current example is a collaborative seeking to improve outcomes for people with dementia in hospital, whether their admission is directly related to dementia or not.
Being involved early helped EEvIT to appreciate the many aspects of this improvement project that the team need to manage, alongside our central interest of evaluation. This has enabled us (with the team) to tailor our input to be most helpful in ensuring the design and delivery of an appropriate, and also practical, evaluation, which is meaningful to stakeholders.
In the early stages of the project, the team say that they valued the EEvIT input, in particular in helping understand the process of logic modelling. Our reflection on this was also that our questions in these sessions, geared to ensuring the team will be able to answer "how did it, or did not work" type evaluation questions, also facilitated their gaining more clarity on the detail of the logic of the programme design. Through this, together we were able to identify aspects that were likely to be key to success, or that we were uncertain about. These aspects are of particular interest to an evaluation seeking to answer questions about success factors and lessons for spread, but also for formative evaluation enabling uncertain aspects to be monitored more closely. Early discussion on evaluation also offered an opportunity to plan for the practicalities of collecting data to support evaluation in a way that hopefully minimises additional effort for participants. For instance, where monthly project management calls are taking place, building some time in for participants to reflect on how the project is going overall.
EEvIT evidence briefings are also helping to inform key areas of development. Read more about two, one of which is informing the development of guidance for group work in post-diagnostic services and the other which directly supported practitioners in testing a different approach.
- Groupwork in Post-diagnostic Support (PDS)
One of Focus on Dementia’s programmes aims "to improve the quality of post-diagnostic support for people newly diagnosed with dementia in Scotland". As (a small) part of that work, practitioners proposed a guide to providing some aspects of PDS in a group setting (as opposed to one-to-one).
The Focus on Dementia team requested an evidence briefing from EEvIT identifying any relevant evidence for the effectiveness (or otherwise) of this approach for outcomes. The review found some evidence of the effectiveness of professionally-led groupwork following a structured programme (usually weekly over 2-4 months), although only where this is both suitable for and acceptable to individual participants.
The Focus on Dementia team have used the briefing to help frame the groupwork guide and also to cite the evidence on the pros and cons for such a model of care. They report that this work has helped give the information in the guide credibility among their many professional partners, and that the draft guide was well received at a recent PDS Leads meeting. It is awaiting further feedback from practitioners and it is expected will be finalised in spring 2020.
- Evidence with feeling
As part of our own efforts in EEvIT to improve our understanding of whether and how our work makes a difference, we recently had the chance to talk directly with a practitioner delivering dementia care services about an evidence briefing we provided to them. What struck us most of all was the strength of the enthusiasm and appreciation expressed. Appreciation of the effort we had put into retrieving and analysing the evidence and to presenting it in a way that was meaningful for them. And, great enthusiasm too about the difference it has made. From the practitioner’s perspective it had boosted their confidence that they could justify the change as well as their confidence in their own judgements - they had picked the right thing to improve. And through this, their commitment to sustaining the test of change had been strengthened.
So some of our learning from this is that, however dry research work can sometimes be, feelings play a part in how it can really make a difference to staff delivering health and care services.
The briefing we provided reviewed best available evidence for the effectiveness of staff sharing mealtimes with those living with dementia in inpatient settings. As researchers normally found in the background supporting ihub colleagues, it was really lovely to get the chance to hear, first-hand the difference it was felt our work had made to services.
Here's some quotes from our interviewee:
"what it did - it actually gave us evidence from the literature that improving mealtimes was the right thing to do. All the environment and social aspects, all evidenced"
"it reduced my anxiety around the whole eating together being seen as staff stealing. I wanted to protect staff. Gave us evidence that it was the right thing to be trialling"
"overwhelming, not what I expected, but lovely"
Evidence and complexity: understanding the benefits of coordinated care for dementia
The Focus on Dementia team is also running a collaborative on dementia care coordination and EEvIT is supporting the team with both evidence and evaluation design. The overarching aim of the project is to take a whole system approach to achieving coordinated care at any point in time, and through time for a person living with dementia, from the stage of being diagnosed through to end of life care.
The Focus on Dementia team is working with one health and social care partnership (Inverclyde) to trial a whole system approach to achieving this with the ultimate intention of spreading good practice and learning to other partnerships. The whole system in this case is large, involving care and community services and groups in all sectors as well as people with dementia. In The Focus on Dementia team’s spirit of a co-production approach, the early stages of this project have seen stakeholders and participants explore issues of quite some breadth and complexity, and this has illustrated the need for a wide-ranging evidence base to support work going forward.
The design and delivery of any care services should be informed by evidence as far as is possible, but where there is complexity, peer-reviewed evidence will answer some questions but is unlikely to provide all the answers needed. Decision-makers will need, in that case, to also draw on local understanding and experience from service providers, care professionals and service users, and consider this alongside peer-reviewed evidence and the reported/evaluated practical experience of others. Whilst these sources might provide a rationale for testing a change, ultimately it is this testing in situ that can provide the evidence for improved local practice. And this is where evaluation can also add considerable value in understanding whether and how an intervention worked locally to improve care and outcomes.
- Read more on the concept of care coordination
The Focus on Dementia team asked EEvIT to provide a summary of the peer-reviewed evidence of benefits of coordinated care for people with dementia in order to inform this work. For this we drew on a recently completed piece of work by EEvIT on care coordination for palliative and end of life care where we gleaned from the literature how complex a concept care coordination is. For instance, as well as coordination through time and at any point in time, arrangements are needed to coordinate within organisations and between health and social care organisations. The World Health Organisation (WHO) defines coordination as, “a proactive approach to bringing together care professionals and providers to meet the needs of service users to ensure that they receive integrated, person-focused care across various settings”. WHO also finds that continuity of care is essential to enabling care coordination, "by creating the conditions and relationships to support seamless interactions among multiple providers within interdisciplinary teams or across care settings or sectors". WHO's further literature review identifies 8 practices associated with coordinated care including, for example: continuity with a primary care professional, collaborative planning of care and shared decision-making, case management for people with complex needs, collocated services or a single point of access etc.
There are thus many dimensions to coordinated care and indeed, to care being perceived as coordinated by those in receipt of care. This poses challenges to those designing research that could provide evidence of the benefits of coordinated care to a standard that would be considered of high quality. The multidimensional nature of the concept means that even if an intervention can be standardised and implemented across various sites, local organisations will vary and so in practice implementation will differ - it is therefore difficult to build a body of comparable evidence. Add to that the difficulty of identifying "control" sites which are similar and where no changes across the dimensions of coordination are being made, and you can begin to understand some of the difficulties faced by researchers in coming to firm conclusions. Unsurprisingly then, in this review, we found that the higher quality evidence tended to be about the individual practices such as case management, advance care planning and continuity of primary care professional, and even this came with caveats.