Super-Ordinate Theme 3: Coping & Adaptations

A third major or super-ordinate theme to emerge, was that of the importance of adapting and making adaptations, coping and managing (for PWLD and in terms of helping them to cope or manage better, or facilitating the therapy). This related to the presenting therapeutic issues, the difficult emotions, behaviours and challenging aspects of life being addressed.

4.1.3.1 Sub-theme 3.1: People with learning disabilities struggled to deal with difficult emotions and life events without support.

All the PWLD interviewed spoke about i) struggling with dealing with difficult emotions and life events; all had experienced strong, challenging emotions ii) that they could not resolve alone or without support.

The difficulties experienced, necessitating referrals for psychological therapy, were in one sense diverse and wide-ranging, due to the individualistic experiences and variety of life-events involved, but in another sense, there was a consensus regarding the actual tangible experience of struggle and dealing with difficult emotions, thoughts and behaviours. Some people had found their emotional difficulties unbearable at times, resulting in self-harming behaviours and extremely painful feelings which could also be experienced physically, such as client 2 Jacky: “I used to cut my arms and … I was in a lot of pain, so I used to cut my arms, thinking it would release the pain – the pain‘d be coming out of me” (Jacky – PWLD - Triad 2 - 1.12). Partly as a result of the therapy, Jacky started to question this behaviour and consider other ways of coping: “and then I think sometimes, ‘why am I doing it for? I’m not gonna get nowhere, I’m just gonna kill meself’… and then I put them back” [tablets] (3.66).

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Sid also described feelings of inner-torture, “I ripped hell out of myself” (Sid – PWLD - Triad 1 - 4.105), which at times he found unmanageable: “I thought, ‘if I’m never going to get rid of this I’m going to do something to myself – because I can’t stand it’” (4.91). Abbey spoke about her feelings of inner confusion, having felt “weak” and not knowing which way to turn, prior to starting her counselling sessions: “it’s really helped… made me release everything…

realise what I couldn’t see, and I felt so weak… I just didn’t know what to do and now I feel so much more stronger –“(Abbey – PWLD -Triad 4 - 4.101).

All the clients interviewed spoke about the difficulties they had experienced prior to engaging in psychological therapy and how the therapists had helped them, such as Edward, who again described the process and with gratitude, in terms of ‘cracking into’ him: “and Tim…

mainly broke the ice really… and helped me to get through it actually… and I’m a better person… to this day, thanks to him…” (Edward – PWLD -Triad 3 - 4.105). Sid described how as a result of his therapy, he was now “thinking… good things – instead of thinking bad things…” (Sid – PWLD - Triad 1 - 4.111). He explained how Eve had supported him to change his extreme negative, self-critical thoughts: “she gave me something about being nice to myself and all this sort of thing – don’t beat yourself up…” (5.128). He felt that as a result of the support, “I feel… I can do things more…” (6.159).

Many of the clients interviewed expressed overt, enthusiastic gratitude and appreciation for their therapist and the improvements they had made as a result of the therapy, but others were more self-conscious such as Neil, who despite describing his sessions as “Counselling sessions are quite depressing, you know, talking about depression is quite a depressing thing” (Neil – PWLD - Triad 5 - 3.58), he nevertheless described positive differences in his life as a result of his sessions with Janice: “The difference is how I’m dealing with things”

(4.106).

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Many of the participants with learning disabilities also spoke about the length of time that was required, in order to make progress and see changes in themselves. This ranged from months in the case of Abbey: “It took a long time… cos I couldn’t remember... but a lot of things since have really come to light, that’ve helped me remember what happened and to move on from it…” (Abbey – PWLD -Triad 4 - 2.50); to several years, in the case of Edward:

“it took a few years to really… it took a long time really, to get me right…” (Edward – PWLD - Triad 3 - 2.53). Edward recalled how much his situation had improved and resolving a

difficult situation for him now can occur much more quickly, with the help of his support team (support workers, parents and Tim): “then if I was in a strop, it took months… to get me right… and now it’s just… the same day, really… less than an hour really some days..”

(2.55).

4.1.3.2 Sub-theme 3.2 Adaptations are essential for therapy with people with learning disabilities

For therapists and support workers who were facilitating therapy, it was found that there was i) a need in PWLD, for adaptations and reasonable adjustments, in order to be able to communicate effectively with the staff involved, and ii) a need for the application of

‘reasonable adjustments’ and putting adaptations into practice by the staff involved, to enable therapeutic interventions to be effective. The term ‘reasonable adjustments’ refers to that part of equality law within the Equal Opportunity Act 2010, where it was recognised that achieving equality for disabled people may mean changing the way that a work environment or employment is structured. This can include removing physical barriers, as well as

providing various forms of additional support for PWLD, such as allowing extended time for psychological therapy sessions or GP appointments.

The need for adaptations and ‘reasonable adjustments’ was explained by support worker 4 Kevin, in describing his wife Abbey: “She forgets things, she’s got a limited understanding

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about it, and a limited concentration” (Kevin – SW - Triad 4 -1.14). He elaborated that it was important in order for Abbey to understand instructions and targets, for her to take “Just one step at a time. That’s what Abbey’s doing. Focus on that and then the next one and then the next one” (3.71). There was some element of Kevin finding this challenging at times, such as in his description here: “I have to keep reassuring and keep going and going and going – to make sure – to make her think – “ (1.15). Triad 5 support worker Paul also referred to this need for adaptations, to facilitate change in his work with Neil (in this case, allowing extra time and the previously mentioned building of trust): “I think with Neil you need a lot of time and he needs to get to know you and trust you” (Paul – SW - Triad 5 - 2.57).

Applying ‘reasonable adjustments’ and putting adaptations into practice was something fundamental that all the therapists were aware of, mentioned and gave examples of in their work, starting with Janice’s assertion that, “You have to do reasonable adjustments” (Janice – Triad 5 - 21.598), to which she added, “you really have to be as flexible as you can be”

(21.616). Janice allowed for ‘reasonable adjustments’ in terms of providing additional time for Neil’s sessions, due to his Pathological Demand Avoidance diagnosis and the difficulty that having a conventionally set 50 or 60 minute session would have posed for him initially -

“I set times rather than it being an hour’s session, I set the time of three hours, which gave him an hour to come downstairs, and feel confident to start to speak, then an hour of him avoiding any issues, and then the third hour started to be more productive” (3.83). Penny also referred to breaking sessions and information into manageable pieces, or stages: “It’s in stages, it’s got to be monitored, that what I’ve done for the past seven months, bit by bit”

(Penny – Triad 4 - 14.438).

‘Reasonable adjustments’ were referred to by Tim, as being important in terms of

transparency of intentions and clarity of communication: “So long as you provide and you’re mindful of applying reasonable adjustments throughout our session, being very open, very transparent… explaining everything as you go along, I think it’s a right positive experience”

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(Tim – Triad 3 - 8.369). Eve spoke about her concern to adapt her materials for Sid: “Sid couldn’t read or write, so I was quite anxious about … I had to make sure that any

information was really accessible” (Eve – Triad 1 - 8.262); she added that “I think it was quite helpful to adapt the materials for him” (9.275). Eve worked closely alongside Sid to ensure the resources she used were appropriate and presented at the most helpful, meaningful level for him to understand: “we came up with a joint formulation, in quite a simplified version. It wasn’t any complex terminology or any sort of complex models” (1.27). She described how “he came up with this compassionate owl, so I printed out a picture of that and he came up with some phrases about that that he could use when he was being self-critical” (9.269) this appeared to be a good example of client-centred working and the use of mutually explored and agreed adaptations, to facilitate maximum use and benefit.