My Grief My Way

PART 3

Ross: [: 00:00:00

David: in, in essence, what, what we were trying to show is that, that grieving I is a very normal, very healthy kind of a process the way that we, uh, are attached to people, the way that we love people. It gives us equally the pain of loss and, and the grief that we experience. And it's really only if we, um, if we try to shut down or block or move away from that, that actually, things become stuck and more difficult.

find it difficult to manage [: 00:01:00

It offers various materials like real life stories, worksheets, mindfulness exercises and poetry. These resources aim to help manage grief through self-directed use or support sessions. Our conversation also touches upon the website's development process, the importance of accessibility, user feedback, and future plans to incorporate more content, including reflections from young adults.

who are regular pea soupers, [: 00:02:00

Let's scoot over to the news desk. Firstly, I wanted to let you know that I'm in the midst of delivering ACT based training in a new environment for me. High performance engineering, which is turning out to be as fascinating and rewarding as I'd hoped. Secondly, I don't know if you've heard, but there's an A CBS UK and Republic of Ireland conference this year from the 14th to the 16th of November in Manchester. You can find all the details in the show notes and we'd love to see you there. Our theme is pollination in innovation through connection. So let's crack on for now.

Get a brew on and have a listen to my chat with Anne and David.

an associated website called [: 00:03:00

It's so. Practical, human, relatable and useful. So I really want to explore that just for the, the listeners. so how would you, how would you introduce the website, to my people soup.

hich we completed in January,: 2025

So my grief my way, it's a website, um, and [00:04:00] that can be accessed by people who have been bereaved, um, or if can be used by people that are supporting others who have been bereaved. So, for example, bereavement support volunteers can use the website, signpost their clients to the website or signpost clients to the worksheets or some of the resources that are within the website.

So we see this as something that can be used in two ways. First, in a self-directed way by the person who's briefed themselves or in a kind of a volunteer or peer support way whereby a professional or a volunteer can use it to support the bereavement that. They are offering in one-to-one sessions for and so on.

or something that they can, [: 00:05:00

Um, it's a free resource. It's openly available so anybody can use it from any location. the name, my grief My Way actually came from our, uh, lived experience group. So we worked with a group of nine individuals who had been bereaved, um, a mix of, male and females who had different relationships to the person who had died.

Like, so some parents, a sibling, a child, well an adult child. And so on. So, and each of those kind brought their perspective in relation to what was important to include on the website. So we're really, we were really grateful to have that input, which meant that our website, materials were focused on what was most needed by, by bereaved individuals.

little bit hard to get their [: 00:06:00

And the website itself kind of provides a, a host of materials presented in different formats, that help people with different. Areas where they get stuck in grief. So my grief, my way encapsulates that. We had a lot of, if you look at the website, you'll see there's a lot of kind of forest imagery, kind of greenery, soothing, relaxing tones.

People quite like that. People have, commented when they see the website that they find it's actually quite relaxing and calming to engage with. And a lot of that was also based on feedback from our. Group of briefed individuals that kind of helped guide us in making decisions around how to present the materials on the website from the start.

how you can engage with the [: 00:07:00

And, you know, discussing the, the different, um, experiences that people have in relation to grief and the different, their different needs. We recognize that people come looking for different things. You know, for some people it might be difficulties with. The overwhelming emotions are distress that they're finding it difficult to move beyond.

You know, for others that might be, um, isolation and loneliness for others that might be, getting stuck or ruminating on things that were said or were not said in the last, um, period up to the person dying. People come with different things and different needs and we felt that different elements of ACT could support people depending on what they needed.

p, um, not to go with a more [: 00:08:00

So we had six incredible storytellers. So these are people who had been bereaved, and were open to talking about their experiences of bereavement, how it impacted them, what they struggled with, and how they coped.

Uh, so we interviewed most of these individuals in their own homes, and then we have, We've edited them and, and created these different stories focused on around different themes where people have problems with grief.

munity that there was others [: 00:09:00

People also like the videos because they feel it. Kind of creates a sense of engagement and warmth. And we like this aspect, I guess. we wanted our website not just to be informational or psychoeducational, we wanted also to support people to kind of connect with the material. And many people found that the storytellers, the videos, where they tell their stories and describe their experiences have been helpful in that regard.

So that kind of sets the scene and a lot of people who come to the website will look at the real stories first.

Ross: Yeah, I think Ann, if I could just say that's, thanks for sending out an introduction, and those lift stories are so powerful. it's a, it's a beautiful thing and I take my hat off to every, well, I express my gratitude and take my hat off to every person who was willing to share

that 'cause it's quite an act of vulnerability on their part.

And the power of what they [: 00:10:00

traumatic for her obviously, but for people around her. And I think my grieving started sort of post-diagnosis. Do you think these resources could be useful for, for that sort of scenario?

times, uh, recently. Uh, and [: 00:11:00

But it hasn't, hasn't been a strong focus so far. It's mainly we're focusing on the, the loss after someone's actually died.

Ross: and we, we must give a big shout out to, to Mary

Curie, who, who funded this, this project and, and

ng us to shape this in a way [: 00:13:00

Ross: wonderful. And I, and I love the way you describe it as a resource that you can, you can dip in, in and out of. frequently now that there's, there's a, there's a section that I really like about understanding grief, and I just found that so powerful with, with titles like intrusive Thoughts, the Empty Chair, physical Impacts of Loss, insomnia, practical Impacts of Loss.

is, and that feels like a, a [: 00:14:00

David: That was, that was very deliberate, uh, because we had the experience of working on a previous bibliotherapy trial where we made a book about irritable bowel syndrome, and one of the things we found from that was that. people develop a relationship even with a book, and especially if you have a character in the book that kind of carries someone through the journey. So, so we were quite keen that, all of the skills delivery was either myself delivering that or, uh, one of the things that Anne did a great job of was narrating these poems. The poems are usually around a theme of grief and loss or, or around a theme of, um, enacting some ACT principles. and, and what that the poetry does is it, it makes these concepts. Not just kind of dry educational, but makes them really heartfelt and really resonant with people and, and they can allow themselves to sort of open up to some of the [00:15:00] feelings that are there. and, and so that kind of consistency of, of, of the person

allows someone to develop a relationship with the website and with us as practitioners and with the real storytellers. so you're right. It feels like there's a consistent relationship which you know, is important in terms of delivery of psychological therapy. And, and you know, some people did speak about that in the research. They said that that was an important feature, uh, for them of having a consistency of person.

ed Ideas and Practice, where [: 00:16:00

David: So, um. We wanted to keep it very simple. We, we didn't want to intro, but we also wanted to give people sort of a conceptual frame to help them understand what these skills were. So, so we didn't want to give the, you know, the six processes of the act, psychological flexibility, hexa Flex. But we did think that simply talking about, uh, the, the three pillars of openness, awareness, and engagement would be a useful, helpful way of helping people to understand, especially because it can then go into that very useful, phrase, which I think comes from Act Made Simple by Russ Harris, which is, open up, be present, do what matters. in, in essence, what, what we were trying to show is that, that grieving I is a very normal, very healthy kind of a process the way that we, uh, are attached to people, the way that we love people. It gives us equally the [00:17:00] pain of loss and, and the grief that we experience. And it's really only if we, um, if we try to shut down or block or move away from that, that actually, things become stuck and more difficult. And so what we're trying to do is to try and teach people a range of skills that will allow them to be, first of all, aware, what what is it that you're experiencing? How are you responding to that? What are the consequences of that? So awareness, building

d in terms of the engagement [: 00:18:00

How, how do you think the person you've lost would want you to be living now? what would they say is important for you? What advice would they give you as a way of trying to kind of foster engagement, but to be, to be able to engage in that kind of exercise. You have to also have a lot of willingness and openness. So, so it, it's trying to balance those three approaches and, and use those three skillset areas to tackle the kinds of problems that get people stuck, that are illustrated in the real stories. O One of the things about the real stories part, we, we did before we actually, um, began the website and before we began meeting people to talk about it, we had a nine month period where we had our experts.

We had our [: 00:19:00

process and we did some further research during that time, both literature research and some qualitative research of people doing ACT for bereavement work. And we brought that all together and, and, and produced, uh, uh, program, program theory, a logic model about why do we think ACT would be a good fit for bereavement. And one of the things that did was it highlighted, there are some common patterns that we see in people that get stuck. One is the overwhelm of emotions. One is the things you do to block out the pain. One is other people's expectations or your own expectations of how you should be grieving. one, one is that was quite surprising was, was, uh, people are surprised often by the physical symptoms that come, you know, like illnesses or pain or this kind come with, with grieving. And so what was interesting when we, we had that [00:20:00] sort of understanding of what, what it is that makes people stuck or, or leads people to be stuck. When we filmed the real people's stories, we didn't ask them to talk about these issues. We just said to them, tell us about your experience of loss. And they talked and then we were able to then work with the production company and say, let's look for these themes in the interview that the people have given us. And we were able to draw out the themes of avoidance, overwhelming emotion, other people's expectations, because they were just so common in people's experience. Um, and so that's why originally when we thought about the real people's stories, we thought, oh, we'll, we'll, we'll have each person individually tell their story. But actually we took this theory that we had about here's why people get stuck, and we were able to use the people's stories to illustrate that. And then naturally, the ACT skills and the understanding grief help to sort of, they, they give you something to do to try and [00:21:00] tackle these common stuckness issues that you see in people who are grieving.

Ross: Wow. That's tremendous. And it's great to see how those, those natural stories

fitted in to, to your, to your

model it was testament to how carefully we'd done that earlier work of developing the

David: program theory.

Ross: And is there any info, um, anecdotal experience on how people have found the website?

Anne: So, so we have tested the website with a number of, um, people who've been bereaved, that have been referred to us from Cruise Scotland and from Mary Curie. And, you know, for the most part, people are really positive about the website. first of all, which was important to us, is that they find it really easy to navigate and user friendly because one of the concerns with her online support is that, oh, actually, will people be able to access it and use it?

hat people found that it was [: 00:22:00

Um. People really liked the exercises, but different people chose different things. And you know, as David outlined, we tried to present the material in a very, kind of a, a clear bite sized way as well, because many people just didn't really have the energy or the cognitive capacity to process a lot of information or to read too much text.

g traumatic experiences or I [: 00:23:00

What happened at that last moment? Or thinking ahead to the future. What am I going to do now? What am I going to do on holidays? What am I going to do at the anniversary? What am I even going to have tea tomorrow for just one person? Will I bother worrying about those, those aspects of your life that had changed?

So those kind of mindfulness exercises, many people found those really helpful and helping them manage that kind of anxiety that comes following grief.

Um, people also enjoyed the, um. psychoeducational aspects. Um, as David mentioned, uh, we kind of felt it was important to kind of focus on, um, provide signposting to advice on nutrition and sleep, but actually partly just to help people recognize that these are normal responses.

p patterns, recognizing that [: 00:24:00

And, you know, so encouraging people to think in. More focused, kinda action-based way about how they could start to think about supporting themselves. So some people found that practical advice, quite helpful. Um, and other people, uh, you know, enjoyed the, you know, poetry aspects or just something that gave them a a space for reflection and contemplation, um, and found that quite soothing.

So we found that, uh, yeah, so different elements were enjoyed by different people, and most people found that they would use the website, you know, beyond the period of the research. They would come back to it in the future and they would recommend it to others. so, so we were, we're very pleased with that.

And as David said, we have some funding now to further develop the resource.

e representation of, kind of [: 00:25:00

And we'd also like to focus a little bit more about how grief evolves over time. So we've developed some extra material in relation to that. and we're looking into kind of other areas such as, as David mentioned, a little bit about anticipatory grief or grief in the early stages. Um, so it's still, although, you know, people have enjoyed the website, there was still suggestions for improvement and refinement.

And with this extra funding from the ESRC, it's an impact acceleration grant, we're able to kind of continue to develop and, and improve the resource.

Ross: Wow. That's great to hear. To hear the impact in the continuing development. I'd like to climb up Arthur's seat and

this website and I think it [: 00:26:00

My request now is, is there a takeaway you would offer the, the p supers to, to reflect on?

nt that some people early on [: 00:27:00

And, and that's, that's completely understandable. but just know that it's there. and that, that there might come a time when you're, you're ready to have a look at it later on down the line. On the other end of the spectrum, we, we had some people in our study who were bereaved, you know, 10, 15 years and they still found benefit and, and significant movement through their grief, even a long, long time after. So, so I would say it's, it's like, you know, the timing is important and it's never too late. Uh, and that these skills that can, can help you to do what is natural. It's a, it's a natural healing process. Uh, and this website supports your natural healing.

Ross: Lovely. Thank you very much. David.

Anne, David, I'd just like to thank you from the bottom of my heart for coming on the show and talking about this universal topic.

d have a look at it. And I'd [: 00:28:00

But thank you so much for joining me today.

David: Thanks Ross. Uh, we'd be, I, I think I speak for both Anna and myself when we say we'd be delighted to come back and tell you more about, uh, restore. but thank you for having us and, and, and thanks for sharing the website with the p supers.

Ross: My pleasure. Thank you so much, Anne.

Anne: Thank you so much, Ross. it's great to be here and really appreciate, um, the time that you've, uh, given to having a look at the website and sharing your feedback on that too. So thanks so much.

.co.uk. It really is as your [: 00:29:00

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Look after yourselves. Peace supers and bye for now.

Anne: Yeah, for me it made me feel really comfortable, Ross, so I really

appreciate that. Yeah,

Ross: oh, thank

you. Thank you, Anne. I loved chatting to you and, and you're a natural at this.