Table 2 Items arranged by cluster
Cluster A: Personal qualities and relationships. 18. I appreciate the “personal touch” 13. I appreciate the human contact 12. A smile and a warm handshake is important 15. It’s important that mental health care workers are gentle and tender 14. I like it when mental health care workers can sit, talk and take time to just be with me 27. I like it when they just sit with me sometimes 19. Mental health care workers should be good, honest people; showing kindness and consideration 58. It’s important that I am treated with compassion, like I matter 69. People should acknowledge me and respect me. 62. My care worker really listens to me; not just to what I say, but what it all means to me 33. I like mental health care workers to “share” as well as “care” 68. It’s important that they show an interest in me, beyond just the tasks and paperwork at hand 11. Good support leaves me feeling safe and secure 46. I need to feel secure and have mental health care workers give me reassurance 66. I appreciate mental health care workers getting to know me, by visiting me regularly 67. I value care-rs, not just do-ers. I miss the “care” part. Cluster B: Communication problems. 1. I want mental health care workers to talk to me, not at me. 32. Sometimes it takes me a bit of time to say what I mean 2. It’s important that people listen to what I am saying. 16. I want someone to speak-up for me 10. I feel uncomfortable if mental health care workers don’t speak and understand my language 31. I expect what I say to be taken seriously 73. Some mental health care workers use jargon I don’t understand 60. When they tell me off for doing things myself, I feel like a child 72. Sometimes they don’t look up from the notes when talking to me 36. I get frustrated when mental health care workers don’t pay attention to what I am trying to say 4. I shouldn’t have to speak-up and say “you’re not listening to me” 17. They should explain things clearly to me, and help me to navigate the system 37. I feel belittled when they try to persuade me that my problems are different to what I think they are 49. I feel that I shouldn’t have to complain. They should listen more carefully 3. If I need to complain about my care, they shouldn’t presume it’s because I have mental health problems 50. I’m worried that they will label me as ‘argumentative’ if I complain to them | Cluster C: Feeling powerless 47. I shouldn’t have to ring mental health care workers to chase-up what is going on 56. It is annoying when different professionals don’t to talk to each other 45. I shouldn’t have to be correcting them, and telling them what they need to be doing 38. Sometimes people on the phone are obstructive; they fob me off Cluster D: In-and-out care. 9. When they are rushed they can’t give you their full attention 25. I sometimes feel like I’m in the way because they’ve got so much to do 35. I don’t feel valued when they are just “in and out” 52. They don’t have time for me nowadays 24. Having to wait for mental health care workers makes me feel unwanted 53. I get frustrated having to sit and wait for the transport in the lounge 34. They should come at a time that suits me 6. Mental health care workers should be on time Cluster E: Bureaucracy. 41. Mental health care workers shouldn’t be stopped from doing their job by rules, bureaucracy and “health and safety” 5. Services should be available in all areas, not centralised in one area 7. I should have a say in what services are available locally Cluster F: Focus on life not just mental health 51. I value flexible support; for them to help me with life’s little things that matter to me 23. I like meetings to be interactive; doing things together rather than them doing it all 26. It’s important they support me to do activities that matter 55. The choice of different activities my mental health care workers involve me in is excellent 28. Good support is flexible so I can have variety in the activities that I’m supported to do 29. I like mental health support to keep me involved and busy 74. Some variety would be nice, so that I can be supported to cook 63. My mental health care workers keep me connected and involved with my community 71. Good mental health care workers are an important part of the community 30. Good support brings people together and keeps me in touch Other items: Continuity of care from people who get to know you 54. There’s a lack of continuity, so you can’t get to know people. 40. I expect new mental health care workers to read my notes before they come. 39. It’s embarrassing to be washed and dressed by a stranger. 57. Some mental health care workers are so fixed in their ways. They just do they job written on their paperwork. 64. I should be asked about what goes into my support plan. 42. They should recognise that if they see me on a “good day”, next time might be a “bad day”. 44. It’s frightening when you don’t know who it is coming to see you this time 59. Care has to be at a pace that suits me. There’s no point rushing me. 70. I shouldn’t be left in an unsafe situation, like cooking for myself. |