The NIHR funded Dementia-Person Aligned Care Team (D-PACT) project https://www.plymouth.ac.uk/research/primarycare/dementia/dementia-person-aligned-care-team, aims to develop and evaluate a person-centred Dementia Support Worker (DSW) intervention based in primary care. The project is based across two sites in the South West (SW) and North West (NW) of England, with a small number of GP practices involved in a current feasibility phase at each site. We are two Research Fellows (Hannah and Sarah) and a DSW (Hayley) involved in this study. The ongoing development of the intervention has been (and continues to be) substantially informed by the ‘on the ground’ perspectives of the D-PACT DSWs, as well as insights from people with dementia and carers, and real-time recordings of intervention sessions.
Pre covid-19, we were solely using face-to-face (F2F) interview data to capture practitioner perspectives. However, as Covid-19 hit, we quickly recognised we would require additional approaches to develop a shared understanding, with practitioners, of the complexities, challenges and opportunities encountered when adapting to remote intervention delivery in the context of a global pandemic. We were also aware that by the time we interviewed practitioners (towards the end of the feasibility phase of the project), they may be less able to recall feelings, concerns, and practical issues (barriers and facilitators) experienced when adjusting to remote delivery.
Therefore, we obtained ethical approval to gather additional sources of data, and made more time for researcher-DSW contact during this difficult time. This blog details our experiences of these new initiatives, and aims to spark further discussions about adapting qualitative approaches and increasing researcher-practitioner contact to help capture and support substantial transitions in complex intervention studies.
Reflective Diaries
During the initial lockdown, Hayley was able to continue delivering the intervention in the SW, whilst NW intervention delivery had to pause due, in part, to staff redeployment. We asked Hayley to start to record diary reflections of working remotely, as things unfolded, to aid her own processing of their experiences, and for us to use as data. No structure was imposed to how the diary entries were captured initially. However, based on discussions with Hayley it was agreed that it would be beneficial for there to be a designated section for positive reflections, due to a tendency to focus on what didn’t go so well.
These reflections have helped us gain a more thorough understanding of what DSWs need right at the start, to support role adoption, and what changes to the intervention could enhance remote delivery. For example, DSWs are currently less embedded into their GP surgeries as the intervention design planned, due to remote working. Consequently, they are less able to have regular contact with GPs. One diary entry gave a detailed account of how not having access to a carer’s GP medical records (EMIS) to review current actions on substantial mental health issues, had caused Hayley great concern. She wasn’t sure how much the primary care team were already aware of the carer’s issues or whether her emails outlining the issues were being followed up. Consequently, she felt quite alone and unsupported. Difficulties communicating via EMIS potentially delayed useful shared learning between the GP and the DSW, although contact was finally made with the GP in this case. This diary entry led to the research team’s decision to advocate access and use of both the carer’s and person with dementia’s medical records, whereas previously the focus had just been on the person with dementia’s medical record.
There are now two DSWs in our NW site who have begun to deliver the intervention, and take part in the data collection methods described above. In addition to aiding changes to the intervention design, the critical reflection carried out is supporting ongoing DSW supervision and development, especially as DSWs are adopting a coaching approach, which is not only new to them but also potentially more difficult to deliver remotely with this population. By taking the time to review what they did, why and what impact it had, the reflections may help them identify communication approaches that best support a coaching approach and those that work less well. Once data collection has been completed for the reflective diaries, it is hoped that the DSWs still opt to record their reflections to support their own development and to potentially help inform supervision sessions.
Increasing researcher-practitioner contact
Right at the onset of the pandemic Hayley’s supervisor was redeployed and was consequently, less on hand for informal D-PACT supervision. During this time, we (D-PACT researchers) stepped in to provide additional support, which has continued since the supervisor returned to her usual D-PACT work. This involved helping Hayley to feel part of a wider team, providing her with a sounding board to talk about the day to day challenges and successes of individual cases, and ensuring she felt supported with the research project requirements. We felt this support was important, as it was coming at a point where she was offering invaluable support to people who had suddenly become even more vulnerable due to Covid-19, but was also potentially feeling less connected to colleagues herself at the start of a new role. We appreciate, however, that providing this type of support may not have been possible if we were in the trial phase of the project, where researcher involvement in intervention delivery is kept to a minimum to reflect real life settings.
The increase in Informal meetings with Hayley during Covid-19 has provided the D-PACT research team with opportunities to quickly trouble shoot emerging issues relating to remote working that were not initially planned for within the project design. For example, in one meeting it transpired that Hayley was extremely concerned that if she was redeployed, her clients would be left in the lurch and not contacted for ages, and if her supervisor was redeployed she would not receive the necessary support for safeguarding. As a result of sharing these worries, a back-up plan for both scenarios was put in place. Opportunities for co-design have been supported through these informal meetings. For instance, researchers and practitioners developed guidance together, for managing the end of the intervention and a closing letter template for intervention recipients and GPs, after the need for these resources arose during DSW-researcher conversations.
As we had obtained ethical approval to use our field notes from these informal meetings as data, they have also given us an opportunity to explore initial analytic ideas with Hayley, gradually introducing and then increasing the use of ‘realist’ type questions and discussions into meetings, to probe her perceptions of potential causal links. For instance, we might explore how the support resources offered to people with dementia and carers are responded to and why; how she thinks that she is adapting components of the intervention based on circumstances/peoples’ characteristics (context); and her own responses to the opportunities offered/not offered in terms of DSW training, supervision and support to become an embedded primary care practitioner. In this way, we have started a process of encouraging practitioners to engage in realist thinking, which we intend to continue into the next project phase. The additional data collection opportunities (the diaries and notes from extended researcher-practitioner meetings) have also enabled us to also clarify and expand on our initial analyses of other data sources (such as appreciating contextual aspects of video/audio recorded intervention sessions) thereby triangulating our findings.
Practitioner experiences of additional methods for enhancing practitioner-researcher understanding during covid-19 by the SW D-PACT DSW, Hayley
Prior to D-PACT I worked on an inpatient ward and I have never worked within a community team. When I first started the secondment onto D-PACT, we went straight into lockdown and I have worked from home since. I was not able to shadow anyone who was already delivering the intervention remotely, so this was a huge learning curve for me. Not only was I learning my new role, I was learning about the community and learning how to work remotely, even learning about new parts of a computer! This was very daunting and I did feel under pressure – was I doing it right? I have never worked in research, so this was all new to me.
Throughout the pandemic I had regular meetings with D-PACT researchers and this really helped me, not only in terms of support with the remote delivery of the intervention, but also because it gave me a chance to learn about the research side of things – what they are looking for, what they need and how I can alter my work for me to be able to do that. Several times something has popped in my head, which I think could be helpful to the study, and been able to share it with the researchers, who have listened and when possible, done something about it. Knowing that I am listened to and that my role is understood, helps keep me motivated, especially when I am working so hard.
I also have really benefitted from meeting with the researchers more often because it has been a huge adjustment from being part of a day-to-day hospital team, to working on my own – so having the chance to have a catch up and chat about study has been lovely. This really makes me feel part of a team and that I belong somewhere, which has been important because during the pandemic not many people knew about D-PACT. I also find that when I meet up with them, they update me on anything I need to know with regards to any actions being taken, manual, training, participants etc. Once, when I was having a tough week, they read aloud to me the latest anonymised feedback from the participants and this really helped me see how much of my hard work is being seen by the participants and the team.
At the start of the interventions I was keeping a weekly reflection diary and a time record sheet, which I found really helpful as a means of identifying where I could benefit from adapting my approach and of what positive results had occurred. After time I struggled to keep up with weekly reflections, as things got busy and my work load was substantial, so then we agreed monthly. Now we have agreed for me to just do reflections if I feel that something significant has happened or if I would benefit from doing so. I tried using a dictaphone, to record my reflections, but I find that writing them down helps me to reflect better. For me personally, reflection is key to being able to see where changes are needed and to identify where skill development could be helpful – for example I recently identified that I would benefit from training on bereavement.
Future directions
We continue to deliver D-PACT remotely and are currently in the process of reviewing how we can adjust our paper based tools to support conversations between DSWs, people with dementia and carers. We are also currently writing a journal article presenting the shared understanding gleaned from our original and extended practitioner data sources, as well as interview data from people with dementia and carers. This will explore factors that can facilitate and hinder the remote delivery of a support intervention for this population during Covid-19.