Transcript: Kinections: what community means for those in care homes

Podcast Episode: Kinections: what community means for those in care homes

What follows is a transcription of the audio recording. Due to differences between spoken and written English, the transcript may contain quirks of grammar and syntax.

MD - Michelle Drumm
ER - Edel Roddy
AJ - Dr Anna Jack-Waugh

MD Kinections was a three-year collaborative research project working with care homes across East Ayrshire to explore what community means for people who live, work and visit care homes with a particular focus on the experiences of people living with dementia. The project was a My Home Life Scotland initiative, lead by a team of researchers at the University of the West of Scotland and was funded by the Life Changes Trust. We had a conversation with Edel Roddy, the project lead at the University of the West of Scotland and Dr Anna Jack-Waugh from the Alzheimer’s Scotland Centre for Policy and Practice. A link to the Kinections project resources is available in the show notes.

MD Thank you both, Edel and Anna for speaking to me about the Kinections research. Can you just tell me first of all, where did the idea for Kinections come about?

AW Edel, I think I’ll hand that one to you.

ER Thanks Anna, and thanks Michelle. So, Kinnections sits within the My Home Life Scotland work and My Home Life is an international movement that seeks to enhance experience of life in care homes for people who live, work and visit and die in care homes. So, My Home Life England, a number of years ago initiated a project called Care Home FANS and FANS stands for Friends and Neighbours: so, this was a project that seeked to explore and enhance community engagement with care homes so, My Home Life Scotland were aware of this work with My Home Life England and decided to apply within the Life Changes Trust Dementia Friendly Communities funding stream to explore if a similar project could take place in Scotland. So, this application came from within UWS and thankfully and very gratefully was accepted by Life Changes Trust.

AW What was exciting about this was the partnership so, the project actually sat and sits within School of Health and Life Sciences at the University of the West of Scotland and the project board has actually been supported by social work team member and also by staff members from Alzheimer’s Scotland Centre for Policy and Practice so, there’s been a real network that this project has sat within and we’ve seen the network that the project has sat within come into it’s own during the pandemic but the initial starting point for the project was in partnership with UWS, Life Changes Trust and My Home Life Scotland.

MD And who was involved then, in terms of the care homes?

ER So our project proposal partnered with the East Ayrshire Health and Social Care Partnership, there had been an existing relationship there between My Home Life and that partnership. Care homes there were familiar with the approaches from My Home Life and so were keen to collaborate on further work together so we have been linking and engaging with the 19 care homes in East Ayrshire. Different care homes had different capacities in which they engaged in the project but the offer was extended to all 19 and so any events, any resources develop, all opportunities were put out to all the 19.

MD And that included the care home staff, the residents, and also family members then?

AW Yes.

ER Exactly so, I suppose I mentioned there that initially as was the inspiration for Kinections was this Care Home FANS project in England and then when we started to do some exploratory work in Scotland what people were saying to us about community was that they were really intrigued and interested in community within the care home as well as obviously links with the wider community or community engagement as we might traditionally understand it. So, very much from the beginning then there was this emphasis on and really exploring what it meant to be community within the care home and how the care home themselves welcome other people into their community. So, obviously that can be relatives but it can be wider health and social care partners, creative agencies, community agencies and networks that they link in with as well.

MD Okay, fantastic. Look tell me a little bit about the research methods then and the approaches because it seems like a really participatory project?

ER Absolutely, yeah so they, the central methodology used in Kinections is a appreciative inquiry which people might know as an organisation and development methodology and it’s also a research methodology so, that allowed us to take the approach of understanding that within every human system there’s something that it’s working well and that by delving more deeply into that finding out and learning as much as we can about what helps things to work well, it can then inform and enhance how we move forward so to apply that within Kinections our approach was very much to start with people and ask them how they understood community and how they understood what it looked and felt like when community was working well in the care home. So, I suppose rather than going in with a predefined definition of community or indeed even trying to arrive at a neatly defined definition of community so, from the very beginning allowing that within the Appreciative Inquiry really allowing for emergence so to really listen to what people had an interest in, had an energy for. What we could tell that they valued and cared about and that that then informed how the project developed so, it was very much that emergent model of listening to people and working with people and then using other frameworks like Relationship Centred Practice and Caring Conversations to inform our work.

MD Okay, so there was quite a number of different types of engagement approaches then around how to do the appreciative enquiry work?

AW Yes.

ER Yes, so I suppose in terms of what we might understand as traditional research methods like group discussions or interviews, the care homes were assigned to a cohort so, within a cohort the first cohort, there was four care homes. So, for the first nine months of Kinections we engaged with those care homes whereby we had monthly group discussions in the care homes and the care homes could invite whoever they would like to those group discussions and then we also had group discussions between care homes and we called those our GEM Meetings, so GEM is standing for Generating and Enhancing Momentum. So, this was a chance for the different care homes to come together, discuss maybe what they’ve been thinking about or taking forward individually and also to share that learning. So, they were bringing their own GEMs, their own insights and knowledge and then actually hearing other people’s GEMs and maybe taking something away from that. So, there was both the in the care home and also the wider connecting care homes together and I suppose alongside that within the Appreciative Inquiry there’s this real understanding about the task of knowledge that resides within people and that the articulation of that knowledge can sometimes be difficult and so as the project leader, the research fellow, I spent a lot of time in care homes doing some observation work with staff and just having really informal conversations to help with that … the (… unclear) of what they were doing that I was proceeding was helping to enhance experiences, enhance relationships, feeding that back and then asking them to help me understand more about what was helping them to do that so there was both the group discussions and also the more informal one to one and informal group conversations as well in care homes.

AW And as a research approach this is potentially not typical, not what people may expect so, the project started out with very broad objectives as every project has to have objectives in order to be able to deliver on what the funders are looking for but the actual approach was for the knowledge, information and for the findings to come from the individuals themselves as they created their sense of community. So, not a typical research approach but one that Edel will be able to tell us has yielded significant outcomes both for the participants in the project as the project was happening but also the researchers and people engaging in the project whenever they could.

ER Yeah, I think exactly, Anna, because there was a sense of that principle within Appreciative Inquiry of inquiry is inter-prevention so, even the fact that we were bringing people together to discuss and explore relationships or community that in itself was a method for helping to enhance community.

MD It’s really interesting because it sounds like the whole project was really around working with people as opposed to coming in and doing the research to people and one of my questions was, what are the main findings of the research and recommendations but maybe it’s not so much about that but you know, what were the outcomes of the research, perhaps?

ER So, I think that there definitely is that balancing between the creation or delivery of what we might expect from a three-year research project and also very much then linking with the idea of emergence and these things that the small things that we might never be able to pick up in terms of the small changes that were possible for people so I think there’s definitely that balancing between the two. I think in terms of what we might understand as typical research findings, a kind of central thing that has emerged is around the quality of our knowing and how that influences the ways in which we can build and enhance community in care homes. So, we have themed that under the theme of Knowing Me and Knowing You and I suppose what care home staff, residents, relatives would tell us is very much that when we know people then that’s when good things happen so, that’s kind of the over all theme in total there were six emergent themes called Clues and Cues to create in community and Knowing Me and Knowing You is the first of those six. Our plan pre-covid was to do some more in-depth work on each of those six Clues and Cues so that then we would have something to say about each of them. So, we still feel we have something to say on each of them but the in-depth work that we had initially planned, a lot of that was unable to happen. So, I think that in terms of where we are with the project, it’s very much seeing about how can we see the project as being sustainable by inviting people to take off the mantel as such and to see the ideas, the resources that have been developed in Kinections, how do they fit within people’s own context and sessions going forward.

MD Could you just give a little bit more information about some of the themes that you talk about and I know there was a number of resources, as you say, that were produced as part of those themes. I would just be really interested to hear a bit more about that.

ER Certainly. So, as I say, the principle within Knowing Me and Knowing You and the idea behind that theme is we’ve used the analogy of an iceberg and so the tip of the iceberg might be the types of things, the questions that we’re used to asking, the type of documents that we fill in that give us really important and valuable information. So, that could be things for example for a new care home resident, like where they lived, where they worked, their family, and maybe their likes and dislikes and then within Kinections we were interested in going beneath the surface of the iceberg and beneath the surface then is really exploring people’s hopes, people’s quirks, people’s bugbares, the kind of things that we mightn’t even think to tell people about and so these are things, again that idea that it can be tasset or hidden and so how do we develop resources that help people to share and for people to realise that this might feel really small to you but it’s really significant and we’re really interested to find out all these small things about you that help make a good day for you. So, what we’ve done is developed a suite of resources that will help with those conversations and very much conscious that obviously people live in care homes have different verbal abilities and their cognitive abilities may vary as well and so these resources are really about inviting everyone into the conversation so, in terms of who, we’re asking family members to share about their mother or father that’s just moved into the care home that we’ve some resources to help those conversations as well. So, the family members have the sense of the kind of things the care homes are interested in finding out more about. But primarily all our Knowing me and Knowing You resources are about people and about deepening relationships between people so the resources are for everyone. So rather than having one set of resources to enhance relationships with staff and then a different one with relatives, we’ve created and designed the resources that we hope feel accessible for use by everyone.

MD And these can be picked up then by other local authorities and organisations …

AW Yeah.

MD … that’s the hope?

AW Yeah, cos all of the resources and the findings are free to access so, there’s currently the Kinections website that’s available and all of the resources will be on there and we’ll also be having a UWS site where all the resources will be available there as well so people will be able to find and use the resources and accompanying these resources are brief guidelines how to help people to get the best out of these resources within their own context.

MD And can you tell me were there any challenging aspects of conducting this research?

ER So, I suppose maybe just to link back to what we were saying at the beginning about the fact that we started this study rather than from a predefined place of saying this is community and then trying to see is it or is it not present within care homes and went with the idea of emergence that that in itself has its intricacies and trickiness because then it’s … how do we explain what we’re doing? So, I suppose that was something particularly in the early days of the project, when we were saying, we’re not telling you what this project is going to be about, we would like to create back together but then in terms of helping people to invest in it when they’re not quite sure what they’re investing in. So, I think that idea of emergence is very much core to what Kinections is about and also presents its challenges as well, and it has done.

AW I think one of the things that we saw quite early on, as Edel talked about, people investing, they wanted to know what they were investing in and I think one of the things that we have learned is that potentially we needed to talk a lot more about what emergence meant and we needed to talk a lot more about the methodologies so, we were able to reassure and gain people’s commitment. So, the commitment did come to the project but it’s that whole element of being able to say there aren’t going to be tight definitions from which measurements will be taken throughout the project because that’s not what the project is about. The project is for people to come together and all people, within care homes and around care homes, to learn from each other and from that learning and discussing the findings about the broad overall outcomes of the project will emerge but I think that idea of emergence was not familiar. Is that fair, Edel, do you think?

ER Yeah, no and I think it’s the idea as well is that with emergence there are so many potential avenues and because community could be understood in so many different ways so in terms of the decision making then in terms of which avenues to follow, which avenues to delve more deeply into and which avenues we might need to leave to one side. Yeah, I’m being honest with that, it’s how do we make those decisions? Where are those decisions made? Was something that definitely arose for us.

MD And it was really good that the Life Changes Trust, who funded the project, were very flexible. They were sort of really open to how you conducted things as well which was really helpful because you could have been set very sort of set outcomes to achieve or ways to achieve those outcomes, potentially.

AW Yes.

ER Yes, so I think they were hugely affirming of the approach and also the wonderful thing, the fact that they are established within the dementia friendly community networks and so the access to the learning that Kinections had from other projects within Life Changes trust and obviously the publications, resources and learning within the Life Changes Trust team as well was really important.

MD Great. And so, in March this year then you had to move from face-to-face research to doing things online and so how did you go about doing that and did it have any impact on the project?

AW The impact was significant because as Edel said, the year three was about testing, refining and continuing with the co-creation around what community looked like in each of the care homes and across care homes and then developing the resources, refining the resources to support community in the care homes and that final year was not able to be done in the way that it was supposed to be done so the work that Edel did in taking a face to face project to completely online was really quite incredible. I paid tribute to Edel and the whole project team actually already and said to be able to make that switch and be that flexible whilst at the same time every body was dealing with their own fears and concerns particularly concerned about being cut off from a community that Edel had become part of was really difficult, to make that change but also to make that change meaningful was incredible. Edel, I think you can describe how that felt to need to do that and then to be able to do that.

ER Yes, and I suppose it’s because care homes were right at the centre and so then people can really in terms of what is fair and ethical in terms of what to ask of care homes and so very much the approach was about stepping back and thinking what are the other ways in which we can develop new learning about community in care homes that is not putting any extra emphasis or any extra I should say, burden on care homes. So, it was very much in those early days, just about acknowledging the reality for care homes and then thinking about probably then by mid to late summer and then thinking and what is possible? And so I suppose the shift then became about just listening to care homes and listening to the fact that because residents were having to self-isolate in their bedrooms and definitely people were feeling like what kind of activities or diversity to people’s days is possible now that they’re spending time in their bedrooms so, really hearing those stories from care homes and then thinking about, okay, so how could we develop online resources that would be accessible to care homes and so we developed a Festival of Friendship which was a one day online festival and out of that we have a YouTube channel which is creative content that has been developed specifically with care homes in mind so it has a host of different resources like a Scottish harpist, we have poetry, we have traditional stories and songs, different dance movement so, I suppose it’s trying to think, Okay this is the new context for care homes, how would we like to respond and it’s still within keeping within the emerging themes of Kinections so that festival was really about the theme of forging friendships and this idea of how strong friendships are within care homes so that’s friendships between residents and staff, between residents and also between residents and wider family members so, that was one example of having wanting to listen to care homes and hoped to respond in a way that was useful.

MD I’m thinking I suppose about sustainability in it going forward in terms of like you’ve had the two years and then you’ve had this year which has been different again, and what are the implications for going forward with Kinections as well because surely, it’s very important work actually, because it’s meant a practical tool that came out of the work that you’ve done and how they can be applied going forward in a post-Covid world if you like, too.

ER To pick up on that idea of the sustainability and very much seeing that where care homes have been since March has been very much about obviously very focused on Covid related activity and all that goes with that that has been essential for them and now that idea of stepping forward and if there is the sense that imminently there might be the possibility to re-engage with development in care homes that looks beyond what was necessary during times of Covid but also acknowledging where care homes have been and that that stepping forward and thinking again about innovation, thinking again about emergence, about developing, enhancing culture in care homes that really ? how to do that gently and with the greatest responsiveness and empathy to where care homes have been. So, I suppose the work with Kinections is really ? speaks to the heart of where care homes are about and what people who work and visit and live in care homes care about and they’ve been through a really obviously difficult time so, how can we revisit the heart at care homes again.

MD So, what is next for Kinections?

AW Well, as the project came to an end we have a resource that pulls together all of the elements of the project and again that’s freely available and they’re the Kinections Chronicles and in addition we have the two web pages that will be available and really from the project point of view, it’s actually come to an end it will come to an end this week but Edel’s got a really clear vision that people should take the resources and start to use them in a way that’s meaningful for their area but continue to make the connections and Edel, I invite you to perhaps talk about how you see it developing now that the project has finished?

ER Thanks Anna. So, I think it is to start to think because there were so many small initiatives within the overall project of Kinections and Kinections Chronicles kind of details 20 of those initiatives, it gives people a chance to really tap into where they’re interest and energy is so, while it’s of relevance to care homes, there’s also some outputs that may be of interest to dementia friendly communities, there is also outputs in relation to research for people that includes people with advance dementia, you know it’s about the idea of participatory research. So, I suppose it’s this idea that hopefully across the whole suite of outputs and resources developed within Kinections that people can pick up just one small thing that really kind of appeals to them and fires them up and then see how they’d like to explore that more but covid has definitely invited us to do this to make all the resources as accessible online as possible and then we’ll have a small number of interactive online resources which again give that other element to the fact that they’re interactive, the fact that there is almost like an activity or a liveness to that idea of doing something online where you’re engaging with something that is helping to generate conversation and help people to get to know one another so, the interactive online activities in particular I hope would be useful within care homes and more widely as well.

MD Lovely. Okay well we’ll leave it there then. Thank you both very much.

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