1. Disability and rehabilitation: patients' goals vs organisational priorities Gail Eva

2. What are the consequences of disability for patients with spinal cord compression? What strategies do patients use to manage disability? How do health care staff understand / respond to patients’ disability? What support is offered to patients in managing disability? Is it useful? Research questions

3. A framework for development and evaluation of RCTs for complex interventions to improve health Medical Research Council (2000, 2008)

4. Review of notes of the 78 MSCC patients admitted July 2003 – June 2005, identifying: disability-related problems measures addressing these 9 in-depth interview-based case studies Components of the research Retrospective notes review Case studies

5. Each case made up of interviews with a patient, their carer(s), and a range of health care professionals – total of 58 interviews. Patient OT Nurse Physio Doctor Social Worker Carer The case studies

6. Alf, late 70s Ca Prostate Retired technician Ben, early 40s Ca Thymus Academic Celia, mid 50s Myeloma Cleaner and carer Derek, early 70s Ca Prostate Retired salesman Eddie, early 80s Ca Prostate Retired sailor Frank, mid 50s Ca Bladder Retired accountant Gill, mid 40s Ca Breast Project manager Hugh, early 80s Ca Prostate Retired academic Ian, early 60s Ca Kidney Engineer Cases

7. The way that rehabilitation is placed on patients’ agenda. The way that information passes from senior medical staff to rehabilitation staff. A focus on discharge as the end-point of rehabilitation. Patients’ response to disability. Patients’ presentation of themselves and their circumstances, and staff’s responses to this. Mechanisms...

8. Exploring boundaries Concern about dependence Reordering and restructuring Wanting information Asserting normality Resisting a ‘disabled identity’ Claiming competence Twin-tracking Revising downwards Finding possibilities Demarcating safe spaces Patients' response to disability Acknowledg- ing the problem Not acknowledg- ing the problem Managing the tension

9. Exploring boundaries Concern about dependence Reordering and restructuring Wanting information Patients' response to disability Acknowledging the problem

10. Exploring boundaries

11. I’m working out the boundaries: seeing what I can and can’t do. I tried to walk up to the doctors the other day, and I couldn’t make it. I sit in the house and I feel fine, and I think yes, I can do it. But when I go out, after a hundred meters I feel very weak. That’s an awful thing to have to surrender yourself to. You can’t get around any more. Exploring boundaries

12. Asserting normality Resisting a ‘disabled identity’ Claiming competence Patients' response to disability Not acknowledging the problem

13. Exploring boundaries Concern about dependence Reordering and restructuring Wanting information Asserting normality Resisting a ‘disabled identity’ Claiming competence Twin-tracking Revising downwards Finding possibilities Demarcating safe spaces Patients' response to disability Acknowledg- ing the problem Not acknowledg- ing the problem Managing the tension

14. Twin-tracking

15. Twin-tracking I’ve had to give up my allotment, which is sad – that was a good break for me, winter digging, that’s hard work. But now I can’t stand and move without a frame. I mean, I could hold on to a fork to steady myself, but then I couldn’t dig. But I have a few ambitions that I will achieve. And the first one – the essence of being independent – is to go and hit a golf ball. Proper swing, unaided, followed by a hole.

16. Revising downwards

17. Revising downwards Interview 1 While I can still walk, it’s alright. I mean, if I had to be in a wheelchair, it would just be terrible.

18. Revising downwards Interview 1 While I can still walk, it’s alright. I mean, if I had to be in a wheelchair, it would just be terrible. Interview 2 (five months later) If we’d discussed this last November I would have been in tears. But now I can honestly say it’s an absolute joy to go out in the wheelchair. The wheelchair thing, it’s almost crept on me, and it turns out it’s not a big issue.

19. Revising downwards Interview 1 While I can still walk, it’s alright. I mean, if I had to be in a wheelchair, it would just be terrible. Interview 2 (five months later) If we’d discussed this last November I would have been in tears. But now I can honestly say it’s an absolute joy to go out in the wheelchair. The wheelchair thing, it’s almost crept on me, and it turns out it’s not a big issue. … I can still walk a bit and get into the chair. If I couldn’t get up stairs at all, or couldn’t get out of the seat… I can’t imagine what that might be like.

20. Exploring boundaries Concern about dependence Reordering and restructuring Wanting information Asserting normality Resisting a ‘disabled identity’ Claiming competence Twin-tracking Revising downwards Finding possibilities Demarcating safe spaces Patients' response to disability Acknowledg- ing the problem Not acknowledg- ing the problem Managing the tension

21. The way that rehabilitation is placed on patients’ agenda. The way that information passes from senior medical staff to rehabilitation staff. A focus on discharge as the end-point of rehabilitation. Patients’ response to disability. Patients’ presentation of themselves and their circumstances, and staff’s responses to this. Mechanisms...

22. Gill

23. Everything has been arranged, from A to Z. I had the funeral directors around, chose my coffin. I love my husband very much, but I love my Mum and Dad as well. And it worried me – if I get buried here, it’s too far for my parents to come if they want to grieve and vice versa, Graham. So I’ve spoken to the vicar, and although I didn’t want to get cremated, I’m going to be cremated so there are two caskets. One will be buried back home and one will be buried here… Gill

24. … I’ve got it all paid for. I’ve chosen the hymns and the music I want played. The vicar e-mailed me the service and all the missing bits I needed to fill in. And it’s all done, it’s all done. So if, God forbid, I take a turn for the worse, today or tomorrow, the i’s are dotted the t’s are crossed on the service and what I want. Gill

25. OT: Gill was remaining incredibly positive considering what was happening to her. My perception was that she was holding it together because that’s her personality. She’s a professional lady and she’s always taken a bright outlook on things as far as she can.

26. OT: Gill was remaining incredibly positive considering what was happening to her. My perception was that she was holding it together because that’s her personality. She’s a professional lady and she’s always taken a bright outlook on things as far as she can. --ooOOoo-- Social Worker: She’s a very competent person, and she has overcome a lot of the problems herself, like finding somebody to provide the care that she wants. She’s very resourceful, she will not sit there feeling sorry for herself. She will work on ways of achieving what she wants.

27. OT: Gill was remaining incredibly positive considering what was happening to her. My perception was that she was holding it together because that’s her personality. She’s a professional lady and she’s always taken a bright outlook on things as far as she can. --ooOOoo-- Social Worker: She’s a very competent person, and she has overcome a lot of the problems herself, like finding somebody to provide the care that she wants. She’s very resourceful, she will not sit there feeling sorry for herself. She will work on ways of achieving what she wants. --ooOOoo-- Nurse: Gill’s a great initiator. She knows how to take things forward and she’s very clear about you don’t wait around for people to do stuff for you, you get on and do it yourself.

28. OT: Gill went home adamant that she wanted to be upstairs, which we completely went with because that was her wish. The bath was highly important to her and there was no way of having a bath downstairs, and she felt that was a better option.

29. Eddie

30. Three am, I’m wide awake and thinking about going home and what I’m going to do… how will I get my rice pudding from the kitchen to my table? Now, see, I’ve got the problem solved. I’ve got a tea trolley I made years ago. I’ll take the back two casters off, add some handles, there’s plenty of timber down the shed. I’ll walk with my tea trolley: push, stop, push, stop, like so. I’m looking forward to going home. It’ll be an adventure! Eddie

31. I had a happy childhood – we ran wild. I would watch the blacksmith pump his bellows when I was seven. I learned so much then, that when I got a job at the factory at fourteen I knew more than the other young starters so I did really well. Fortunately, everything is just fortunately, I met a good gang of kids, they didn’t drink, they were really good lads. The chaps at work, I always met the best ones, I don’t know why, but everything seemed to work out right for me. My friend knew someone in the Merchant Navy, helped me to get a job there. I’ve been to almost every country in the world. The blokes on the ship were really good fellows, they took care of me. Eddie

32. OT: When I first met him he was relatively realistic, saying he didn’t think that he would cope at home as he was. I agreed that he needed to be independent with his mobility before he could go home. But he didn’t really improve with radiotherapy and he was getting more and more frustrated, maybe feeling like we were handling him with kid gloves a little bit, saying you’re not ready to go home. The more conversations I had with him, the less he seemed to understand what we were getting at and that he wouldn’t be able to go back to how he was originally. … Eventually, we said you’ve got options: either go home as you are but agree not to undertake any kitchen activities, or if you want to be independent, you’ll need adaptations to the kitchen to allow you more space to manoeuvre. He said he just needed a rail on the work surface, things that we thought weren’t so appropriate because work surfaces aren’t meant for such weight bearing activities.

33. We had to be quite assertive with him to make him understand where we were coming from and why we were saying what we were saying and that it wasn’t to take away his independence, even though it was in the short term, we were trying to do it so that long term he would maybe have some rehabilitation at home as such.

34. We had to be quite assertive with him to make him understand where we were coming from and why we were saying what we were saying and that it wasn’t to take away his independence, even though it was in the short term, we were trying to do it so that long term he would maybe have some rehabilitation at home as such. Gill went home adamant that she wanted to be upstairs, which we completely went with because that was her wish.

35. I asked him whether he wanted me to make a referral to the [community services] for ongoing rehab at home because I knew independence was really important to him. He declined, which was a shame really. I tried to explain that they could carry on the work that we were doing in hospital but he still didn’t want it. I was surprised actually, I really thought that he’d be very keen on that.

36. The first time I used it, it was the wrong move really, because we went to Tesco and Tesco was busy, and there I was down, you know, in this wheelchair and all of these people, I just felt all these people coming towards me. And it was like – oh, I had no control. It was terrifying, absolutely terrifying and I just wanted to get out. Gill

38. Three Ps Looking out for, and supporting, the ways in which patients are acknowledging and adapting to disability. Identifying short-term, achievable goals and focussing on these. Encouraging realism without contradicting patients’ preferred sense of self. Helpful responses to disability