Person with ID
ABAS General Adaptive Composite (GAC)
Does the data support benefits from UMAA-LD SoF?a
Relationship to person with ID
Paid support worker
Paid support worker
Paid support worker
Content of session
Approximate time frame
Introducing the session
Review homework log
Psycho-educational component i.e. what is anger? How do I know that I am angry?
Soles of the Feet meditation practice
Review of the session and home practice setting for next week
Participants with ID
The Journey: A Mixed Bag
Three participants recalled that UMAA-LD SoF was hard to learn about at first, and one participant described UMAA-LD SoF as ‘Very very weird—trying to figure out how to do stuff’ (P4). Three of the participants who said it was difficult to learn also stated during the interviews that they had a goal in mind and wanted to reduce their aggression. These participants thus worked hard to understand UMAA-LD SoF and engage in the home practice. As the sessions progressed, three participants (P1, P2 and P4) reported that their understanding increased.P7: Yeah, put your feet on ground and enjoy.I: Yeah.P7: Yeah.I: You remember doing that?P7: Yes.I: And what was that like for you?P7: Good, good, yeah.
Participants reported a range of different things that they liked about UMAA-LD SoF and felt generally positive about their experience, but throughout the interviews, they were not able to communicate precisely what it was about UMAA-LD SoF that was helpful. For example, some spoke of the calming effect of meditation practice.It was hard at the beginning (..) but I thought it was easy when I got used to it it was alright. (P1)I think it was, it was hard at first, then talking to the nurse, got better at it. (P2)Once you practice…it was getting easier. (P4)
A core practice in the SoF intervention is when the therapist invites the participant to evoke a happy event in one session before being guided to shift their attention to the soles of the feet. This practice is then repeated using an anger-inducing event for the remaining sessions. Some participants were very clear that they enjoyed doing specific exercises such as the SoF meditation, although they found it difficult to articulate the concepts behind what they were doing, perhaps demonstrating that they did not understand the intention of the exercises fully.Very soothing. Very soothing, and relaxing. (P1)It gave me a chilling out experience so I’ve got too much chat up there. (P4)Um, just enjoying relaxing and putting my feet on the ground. (P7)
Some were not able to go as far as to articulate what they liked best about the SoF intervention but seemed to have a largely positive experience.P2: Um… I think it’s probable... I like the most, eh… imagining the brain.I: Right, OK.P2: That was good, I liked doing that yeah.I: Yeah. So, what were you picturing up there then?P2: Like when they do say good things, stuff like that, plus lots of bad things imagine bad things as well, stuff like that there was as well. (…) Think back, you know. You feel like you’re there.
Some participants were neutral or noncommittal in their responses ‘It’s ok’ (P3) and ‘Alright’ (P6), but either did not want to or could not elaborate further. In addition, P6 frequently spoke about how much she enjoyed talking to the therapist, although said she disliked the mindfulness practices and did not really engage with UMAA-LD SoF itself.I: And, what bit did you like best about it?P5: Everything.
All participants reported liking their therapist and getting on with them well. Overall, the UMAA-LD SoF sessions were a pleasant experience for participants and acceptable to them. It was notable that participants had different levels of engagement with the intervention, and this seemed to be reflected in the precision of their responses when asked about the learning process. Two participants expressed an aversion to an element of the interventions which asks participants to recall a situation that made them angry. ‘It was hard at the beginning (…) I get angry, tensed up in my body, kept up to three times, well it took three times to relax me, so well done.’ (P1) A core message of UMAA-LD SoF is to encourage participants to turn towards and experience their anger—along with the message that being angry is a natural emotion. This turning towards difficult emotions is what P4 found most difficult about UMAA-LD SoF.I: Yeah, did you like it [the meditation practice]? Or didn’t like it?P6: Didn’t like it.I: You didn’t like it.P6: No.I: What didn’t you like about it?P6: Eh… don’t want to talk about it.I: Don’t want to talk about it?P6: Well, I like, I like talk to [therapist name]
There was a variation of engagement with UMAA-LD SoF between participants, but the majority were overall positive about the experience. Some found it difficult at first and reported that turning towards unpleasant feelings was challenging. What was difficult to uncover from the accounts was precisely what was good or difficult about the intervention beyond fairly broad statements of liking or disliking, which may be related to participants’ cognitive challenges.I: Yeah, so which bits were hard?P4: Focusing on what was angry and upsetting you.
After-Effects of UMAA-LD SoF
Although not part of UMAA-LD SoF—which focuses on the emotional reactivity to anger—an effect of the intervention for three participants (P1, P2, and P5) was that they had developed and applied strategies for working with difficult interpersonal relationships so they were less likely to become reactively entwined in conflict.P1: Before…I couldn’t do anything, but now I can do things.I: Yeah.P1: I can relax, watch TV.
Two participants said they did not notice any changes in themselves after the intervention; for example, P6 described herself as ‘All the same’ and was vague when asked to elaborate, perhaps indicative of a lack of understanding of the intervention. The following response was typical:Like and since when my dad’s trying to argue, I just erm, try not to ring him, I just say he text me, which is better innit? (P2)
There was more evidence of participants not understanding some core concepts of UMAA-LD SoF. For example, a central message is that it is normal to feel angry sometimes; although P5 reported positive benefits of the intervention, she did not feel her anger was an acceptable emotion, which is evidence of a vague—or even inaccurate—understanding of core mindfulness concepts.I: So, what do you think the biggest change is?P3: I’m…Not to be.. Not to be happy or sad.
Two participants gave conflicting answers during the interview, sometimes saying the intervention helped and sometimes saying the opposite. It was unclear if they understood the question or were complying with the interviewer.I: So, has learning the soles of the feet changed how you feel about being angry?P5: Yes, always.I: Do you feel it ok now to be angry?P5: No.
The participants who said the intervention had no effect on them were either unable or unwilling to elaborate on this point. It is therefore difficult to know how these participants experienced the intervention, or what aspects of UMAA-LD SoF were unhelpful, or, alternatively, whether this is indicative of them finding the intervention difficult to engage with. In contrast, when participants spoke of positive impacts, they were able to elaborate on what those positive changes had been and pointed to fundamental shifts in their behaviour or general sense of well-being.I: Yeah…ok, do you think it [SoF] helped you at all?P6: Yes, did help at all, yeah.I: How did it help you?P6: um...[pause]I: If it didn’t help you, you can say: “it didn’t help”P6: It didn’t help.
Mindfulness in Everyday Life—Now and in the Future
Although the main intended outcome of UMAA-LD SoF is to enable participants to use the SoF mediation practice whenever they feel anger arising, only one participant explicitly stated that they used the SoF in this way: ‘Soles of the feet, so if I get angry I think “Oh I’ll take a deep breath and think of the soles of the feet.”’ (P1). Participant 5 showed some understanding of the concept of SoF, but it was unclear whether she used this in response to anger outside of the sessions ‘You push it down to your feet instead of they going upwards to your head.’It helps me to put my feet on the ground, and enjoying myself, relaxing…really good. (P7)P5: I’m in bed last night I’m doing...my breathing exercise in bed.I: Well done, so you’re still doing it?P5: Yeah, still doing it.I: And do the people have to remind you or you just do it yourself?P5: Do it myself.
The participants who reported benefits from UMAA-LD SoF also used the CD regularly, whereas those who did not were less likely to continue using the CD. It was difficult to interpret from the interviews in what way participants intended to use the SoF practice in the future; some said they would use it but were vague about how or when they would use it.P2: Yeah. Still using it now sometimes [the CD].I: Yeah. How often do you do it now?P2: Erm…I do about four days, four days a week still. Three or four days, yeah.
Some participants choose some parts of the intervention that they liked and would use in the future; again, it was unclear whether there was an intention to continue to practice mindfulness.I: And will you carry on using what you’ve learned?P2: Yeah, think I’ll carry on.I: You’re gonna carry on?P2: For good (laughs).
The main aim of UMAA-LD SoF is to give participants a meditation practice they can use in any situation where they feel anger arising. Just one participant reported using SoF in this way, with the majority using a simple breath practice as and when needed to enhance their well-being. Some participants, although they listened to the CD regularly, did not appear to engage in the practices after the intervention had finished. It was difficult to discern, even among participants who said they currently benefited from their independent mindfulness practice, how they intended to use mindfulness in the future.I: Ok, and, will you carry on with the soles of the feet, do you listen to the CD now?P3: No, at the moment, no.I: No, Ok. You don’t do that. Do you ever use your breathing to calm yourself?P3: Yes
Motivation Is Key
In contrast, the other three supporters spoke of how the clients were not motivated by a desire for change and were largely indifferent to the content of the sessions, as they simply liked the break in their routine, or did the intervention due to expectations of others around them.She’d seen what she’d done and she realised it had taken her so many years to go on holiday after the last disaster and she didn’t want to do it again. (Supporter 5)The same three supporters reported that the person they cared for tried hard to engage with the SoF – which meant they were able to persevere even when initial difficulties were experienced.He was determined he was going to do it, and he was there with the CD … but he didn’t need prompting to do it. (Supporter 1)(He) made good use of the course and really give it his all, really tried hard, focussed and did everything that was asked of him outside. (Supporter 2)
However, all supporters spoke of a positive relationship with the therapist who the person with ID liked spending time with—independently of whether they perceived the course was suitable for their client or not.It’s not something she’d say “I got to do it because it’s going to help me”. No, it’s a case of “[therapist] is coming we are going to do it” it’s done and it’s put away. (Supporter 3)
Understanding Is Key
The three professional supporters, however, felt their client did not have an understanding of the SoF intervention:Quite simple and easily accessed which is important. (Supporter 2)Another supporter described how some initial difficulty was overcome by a willingness to persevere:It was hard to start off with until she got into how things worked, understanding it, it’s the understanding, perhaps to do with the disability you see, so you have to repeat and repeat until it’s sunk in. Then once it was there it was fine. (Supporter 5)
A supporter felt his client struggled with the more cognitively demanding elements of the intervention, who was not able to recall a situation that made him angry to work with in the SoF meditation:[Client] tended to repeat quite a bit of it, as opposed to answer what [therapist] was trying to ask her. (Supporter 6)I just think on the whole she finds it hard to relax and she doesn’t understand what you mean when you say relax. (Supporter 3)
However, all supporters reported that the person with ID was able to engage in the simple, more practical mindfulness practices (such as sitting still and focusing on the breath) during the sessions.What is anger to him? And it- is it self anger or is it someone else’s anger? You know, he still remembers other peoples as well and gets them mixed up. (Supporter 7)
All supporters reported that the person they cared for seemed to enjoy the sessions and were able to engage with some of the simpler meditations (focusing on the breath or the body). Some said the person they cared for struggled with recalling an anger-inducing situation and working with this in the sessions and did not appear to understand what was asked of them. It is unclear what differentiated this, although the qualitative data presented here points to motivation and lack of understanding being a crucial factor; those who wanted to reduce their aggressive behaviour (perhaps itself a sign of greater personal insight and understanding) also had a greater understanding of UMAA-LD SoF and were able to apply this learning to their everyday lives.She’d do it in the sessions… and she could sit and close her eyes and she would breathe and she held the bean bag and things and she could do the physical sort of things. (Supporter 6)
Changes in Aggressive Behaviour
Similarly, the other two supporters gave examples of positive behaviour change in response to a situation that previously would have likely prompted an angry reaction:He’ll come in and say something’s happened …and I said, “What did you do?” And he said “Oh, I let her get on with it.” … he wouldn’t have done that before he would have been round banging on the window probably. (Supporter 1)
Supporter 5 spoke of how she had noticed a general reduction in aggressive behaviour, although this did not arise from her family member actively implementing the SoF practice when she noticed anger arising but seemingly from more cognitive awareness about her behaviour in general;A couple of weeks ago there was somebody who said something … something along the lines of “What are you looking at?” and [client] just … kept on about his business (..) Didn’t get involved. (Supporter 2)
In contrast, the two supporters who reported no benefits in mood or behaviour, e.g., ‘I can’t say she has benefitted if I’m honest.’ (Supporter 3), attributed this to their clients not understanding the SoF sessions and were thus unable to actively engage in the intervention ‘If you don’t understand something, you’re not interested in it.’ (Supporter 6).She seems to think that little bit more before she kicks off (…) you can see she’s sort of backing off and then she…then she ju-… and then walks off (…) It’s made her understand things more that she can’t kick off whenever it suits her. She’s got to think about the consequences.
Everyday Impact of UMAA-LD SoF
All three supporters who considered that SoF was suitable for the person they cared for identified positive life changes, explaining how they had engaged more inclusively with everyday activities.When he goes out he’s not so stressed and he’s not worrying so much (…) it’s brought his confidence back … I think because he has the confidence to go out knowing that he doesn’t have to get involved in an argument. (Supporter 1)
This supporter perceived a radical change in outlook for the client, which also impacted on his being able to resume leisure activities:He’s been able to go out and it’s changed his life really, turned it right round. (Supporter 1)
Positive changes in relationships were also noted for the same three people. One supporter reported that their family member was more sociable within the family, and also started to form new relationships outside the family unit since the intervention:There has been a self-realisation, that he is, umm, an adult in his own right, can make his choices and can keep out (of) situations if he chooses (…) [He’s] managed to return to situations, trips away at weekends and things that had to stop for a while. (Supporter 2)
Positive change was also evidenced by an absence of problems:He’s talking about other people that he’s met, you know he’s made friends at these places (…) he is joining in… he does get on with people they are all saying that he gets on. (Supporter 1)
It is important to note that no changes in quality of life were reported for those who were not motivated to change and/or did not understand the intervention; supporters reporting on this did not go into any details beyond saying that little had changed in their client’s lives since the intervention—typical responses were ‘I think he used it as a trip than it did something to help him’ (Supporter 7). One supporter wondered why the person they cared for had the intervention at all, ‘She doesn’t very often get angry’ (Supporter 3), and did not report a change in behaviour.[She] hasn’t fallen out with anybody lately. (Supporter 5)
Supporter Understanding of UMAA-LD SoF
Did Clients with ID Understand UMAA-LD SoF?
Those that reported a lack of understanding also felt the client enjoyed the sessions despite not being able to engage fully with the content; here is a typical comment:She gave me such a wonderful level of depth in her responses that I was in no doubt that she’d understood what I was asking her. (Therapist A)
During the interviews, therapists were keen to stress that further screening before UMAA-LD SoF would have been beneficial, to assess whether clients were cognitively able to participate in the intervention, and additionally to check their motivation and willingness to commit to a mindfulness practice.It just wasn’t clicking for him. I showed him the snow globe and explained how it represented his thoughts. He asked if it was real snow. He just seemed to be missing the point. Another example is that when we did the sitting and breathing practice, whatever I said he would repeat. For example, if I said sit comfortably, he would reply “Yes I’m comfortable”. He just kept talking throughout, which is part of him. He was happy to do it but it wasn’t making any impact. He didn’t get the essence of it. (Therapist B)
In relation to eligibility and I think certainly the level of cognitive ability is one consideration (…) So I think with a robust eligibility screening tool then absolutely it will be really valuable. I think perhaps I should also consider motivation and commitment to engage in that process, alongside cognitive ability. (Therapist A)
Supporters in Sessions
For the therapists, supporters who sat in on the sessions but did not join in caused difficulties, and having a supporter at the sessions was another ‘task’ that the therapist had to monitor during the sessions.I think the support teams were a bit more on the ball and they were trying to incorporate the practice into activity schedules and things like that (…) with family members they just, the ones I was working with, they were just sitting there because they had to, or they fell asleep, it was my voice sending them off so they weren’t as engaged as the support team. (Therapist C)
Another therapist reported on the lack of consistency of supporters, so the person with ID had no consistent support to help them apply the SoF practices at home.I think dealing with the [paid] carer and getting her to be motivated as well with the approach, that was definitely a challenge. (Therapist C)
Therapists spoke about how wider organisational issues prevented supporter engagement, and also on an individual level, how supporters needed support to enable them to (a) understand UMAA-LD SoF and (b) help to adequately support their client at home.I think I had six different support workers within the eight weeks so it didn’t help and then because it’s a haphazard rota (…) And it didn’t help her because then [paid supporters] weren’t relaying the stuff even though I’d spent time with them. I couldn’t spend time every week with a different support worker, there wasn’t the time for that. (Therapist 3)
It seems that some supporters struggled to help the person with ID due to lack of engagement and high staff turnover. Therapists felt that supporters needed extra training beyond simply coming to the sessions with the person they care for.It would be nice to have just a little bit of a training pack for the supporters that are gonna support them, so they have a better understanding of why we’re coming in and what we’re doing. (Therapist 3)