Interim analysis of interviews Understanding self-management of longer-term depression: learning from the patient IQuEST

1. Interim analysis of interviewsUnderstanding self-management of longer-term depression: learning from the patientIQuESTS Work package 2. Eleni Chambers, Sarah Cook, Anna Thake, Alexis Kilgarriff, Sue Shaw Enquiries to: [a.thake@sheffield.ac.uk] IQUESTS WP2 Interim analysis of interviews May 2011

2. Research questions • Primary research question: How do people with longer-term depression perceive and manage their condition? • Secondary research questions: • What help do they require to maximise their wellbeing? • How have services been utilised as a resource for self-management for depression? • How can recovery principles be applied to multi-disciplinary interventions for people with longer-term depression? • How do people know if a self-management strategy is helping, and what are their views on how it could be measured? IQUESTS WP2 Interim analysis of interviews May 2011

3. Interim analysis of interviews: this talk will cover: • Characteristics of the participants • Overview of themes and categories • Some overarching themes • Some specific themes • Key points and more questions IQUESTS WP2 Interim analysis of interviews May 2011

4. Characteristics of the 7 people interviewed IQUESTS WP2 Interim analysis of interviews May 2011

5. This diagram gives an overview of the many and varied ways that people self managed and talked about their experiences of longer term depression IQUESTS WP2 Interim analysis of interviews May 2011

6. Major themes IQUESTS WP2 Interim analysis of interviews May 2011

7. Overarching themes: Issuessome may lead to principles of self-management • Individuality • Determining what things help and harm me • Choice, control and power • Prevention/Sustaining wellness • Looking outwards vs inwards • Measuring self- management • Importance of doing • Trying new things and continuing of things • Focusing on absorbing activities • Adapting activities to suit • Work life balance • Making self-management a habit • Habits and routine • Reactive patterns of behaviour IQUESTS WP2 Interim analysis of interviews May 2011

8. Individuality • “I think you need to feel that whoever it is trying to help you is just responding to you as an individual and not through some pair of glasses that they’ve got on that isn’t about a particular way of doing things” (P32.149) • “I do feel I'm an individual and if I don't want to listen to that I don't see why I should!” (P22.215) • “Being with other people in the same boat was great, um, but there was something about your individuality and your choice over what happens” (P22.225) • “ we’re not all in a mould... We’re all different, aren't we? And we all have different interests” (P22.252-254) • “let’s live together yeah, that’s that's how you do it and this is how we do it, you know, back off” (P22.262) IQUESTS WP2 Interim analysis of interviews May 2011

9. Choice, control and power • “I think, um, just feeling sort of powerless and trapped in your situation is a huge factor in depression” (P32.190) • “they sent me on one of these stress evening courses” (P32.26) • “I think control’s quite an interesting one with me so I think I'm, I like to be in control or what, erm, I think if I tend to find things are sort of spiralling out of my control, whether they are or whether it just feels like that, tends to get me down quite a lot, so anything that I can do to regain that control is definitely something that makes me feel a little bit better.” (P15.175) • “I think it's important to me, I think because for most of my life I didn't feel like I was in charge really” (P31.347) • You know that I could do something, I think that's been a gradual process to where, I don’t know, you're, you’re under pressure, aren't you in society to conform a lot and you know everybody thinks, right you got to go and get a good job...” (P31.351) IQUESTS WP2 Interim analysis of interviews May 2011

10. Focussing on absorbing activities • [at work with clients] “Yeah, so it was like for that hour or whatever we meet and then it's you, you're almost taken away from your depression because you’ve got, you know, professionally you've got, you've got to be like that, so”( P31.90) • “I've always done is play football throughout all, …one hour or whatever, it's if you're playing football or any sport I presume or something that you get involved in, you’re not, you haven’t got time to think about yourself, or whatever” (P31.104) • "Yeah, but it it's helpful to me because I can, it's something physical that I can concentrate on, it doesn't matter to anyone else whether I I'm really good at it or really bad at it". (P30.90) IQUESTS WP2 Interim analysis of interviews May 2011

11. Overarching theme: Changes • Learning over time • Conscious • Forced • Giving up • Natural • Resistance IQUESTS WP2 Interim analysis of interviews May 2011

12. Learning over time • “I, want to say I probably wouldn’t when I were younger [appreciate the countryside]…as you get older I've found that you really appreciate the wonder of it all, you know”( P22.74) • “CBT was not helpful at the time but I relied more and more on it as the years have gone by” (P30.156) IQUESTS WP2 Interim analysis of interviews May 2011

13. Changes - forced • “once I had kids of my own I was forced to, to cook…forced to look after myself for the sake of the family really” (P32.65) • “[He] forces me to talk to him, which is good, ‘cos he, he notices and he goes, are you alright, and I say yes when I'm not, erm and then he sits there and looks at me, and, you’re going to tell me, whether you like it or not, er and then we talk about it and I feel better, but I wouldn't do that if he didn't make me, although I don't know why, I can't explain why” (P15.96) IQUESTS WP2 Interim analysis of interviews May 2011

14. Natural • “I think confidence for me just came with feeling happier and doing things that I was more suited to…it came naturally. I couldn’t have created that…I think it just comes as a by-product of the other things” (P32.302, P32.304, P32.306) IQUESTS WP2 Interim analysis of interviews May 2011

15. Specific themes • The greyness of depression • Oneself • The process and effects of self- management • Therapy • Service organisational issues IQUESTS WP2 Interim analysis of interviews May 2011

16. The greyness of depression • Recognition, acknowledgement and acting • Self-monitoring • Triggers • Episodic • Fear of it returning • Just don't think about it • What's personality and what’s depression? IQUESTS WP2 Interim analysis of interviews May 2011

17. Recognition of depression • “I have had a couple of times where I’ve thought oh goodness me, I’m going downhill again, and I think my husband sometimes, if I’m a bit ratty, he thinks oh God, she’s got, going that way again” (P32.117) • “For me one of my erm warning signs is feeling you know swamped with all the stuff I have to do, erm not so much that I’m doing more than I usually would do but that feeling of not being able to manage it” (P30.24) IQUESTS WP2 Interim analysis of interviews May 2011

18. Self-monitoring, Acknowledgement • “Since being a [current work], recently I haven't had to erm, partly I think because I'm able to catch it a lot earlier than I used to, through the sort of self monitoring and self awareness that I, and I don't get as bad now as I did then” (P15.316) • “I think probably the key one is to acknowledge that you’re allowed to have sort of unhappy feelings” (P30.350) IQUESTS WP2 Interim analysis of interviews May 2011

19. Fear of depression returning • “When I do begin toget low I just feel like my life’s sort of overtaken me and it's sort of like a bit like you’re drowning, erm and you’re trying desperately to keep on top of things but it's all getting out of hand” (P30.277) IQUESTS WP2 Interim analysis of interviews May 2011

20. Just don’t think about it • “I think when things are going well you just don’t think about it really…it’s only when you start losing it that you notice” (P32.207, P32.209) IQUESTS WP2 Interim analysis of interviews May 2011

21. Oneself • Self-awareness • Acceptance of self • Self-compassion • Self-worth • Confidence • Hope • Identity • Self-advocacy • Gratefulness • Being true to yourself • Resilience • Knowledgeable IQUESTS WP2 Interim analysis of interviews May 2011

22. Acceptance of self • “I don’t know if people who are depressed, get depressed, are particularly prone to it, but wanting to be the person that you’re not and trying to live that, I did think I did that for a long long time and then just finally admitted, well, I’m not that kind of person, I don’t like doing those kind of things, and this is who I am, you know” (P32.92) • “I went in for all these difficult things, like being a social worker, and really all I wanted to do was work in a library (laughing) and now I do and I’m myself!” (P32.93) IQUESTS WP2 Interim analysis of interviews May 2011

23. Self-management activities • Ways of thinking • Religion and spirituality • Self help books and computer programs • Employment • Education and training • Voluntary work • Exercise/ Physical Activities • Nature/Green Activities • Team Sports • Cinema • Eating out • Holidays • Spending money on myself • Making with ones hand e.g. crafts, baking, DIY • Reading • Writing • Photography • Music • Art • Collecting things • Internet e.g. Facebook and eBay • Medication • Self-care • Sleep • Alcohol • Diet • Street drugs • Tobacco IQUESTS WP2 Interim analysis of interviews May 2011

24. Connections to others • Empathy for others • Kindness of others • Openness and honesty • Talking • Helping others • Others helping me to support self-management • Putting on a mask • Stigma and ignorance • Pets • Children • Family • Partners • Friends • Socialising • In the same boat • Peer support • Being part of a group • Sharing experiences to help others

25. The process and effects of self management • Calming • Lifts spirit • Changes perspective • Gives meaning • Distraction • Fun, interesting, satisfying, achievement • Learning • Being more active in mind and body • Looking forward • Multi sensory stimulation • Dealing with feelings • Different personas • Saves money Are some of these measurable outcomes? IQUESTS WP2 Interim analysis of interviews May 2011

26. Therapy • Therapy that suits me • Knowledge of • Access to therapy • Frequency • Tools and strategies • Destabilising IQUESTS WP2 Interim analysis of interviews May 2011

27. Therapy that suits me • “CBT taught me logically which suited me, a logical pathway to work through, building on my scientific background” (P15.127) • “I did a N.L.P. [Neuro Linguistic Programming] course at [name] day services…that was the turning point, I had done 2 courses using C.B.T, but until then nothing seemed to work...it was like a martial art for the mind, using force against its self, it unlocked the door, and one task in particular really helped“ (P35, personal correspondence) IQUESTS WP2 Interim analysis of interviews May 2011

28. Therapy that suits me • "but I think what that initial counselling enabled me to do was to put all this sequence of events from childhood up to, well my grand old age, whatever I am, erm, into, I s’pose into some order and I think someone just kind of like, ‘cos when you don't, you know, when, I mean I’m not someone who, who, I probably don’t seem like it now ‘cos I’m talking quite a lot, aren’t I, but I’m not someone who normally talks a lot. (laughing)" (P31.196) IQUESTS WP2 Interim analysis of interviews May 2011

29. Service Organisational Issues • Resources (waiting time, experienced therapists) • Individuality catered for • Respect • Politeness • Institutionalisation • First Impressions • Access • Assessment • Flexibility and range • The right service at the right time • Communication between services • Security blanket IQUESTS WP2 Interim analysis of interviews May 2011

30. Key points so far • Each person has a unique bundle of self-management activities and supports • This takes time, often several years, through life experience and trying different things • Common elements so far: • self awareness & recognition • talking to someone • doing things to get moving, focus away from distress, achieve and enjoy • ways of thinking that help • use of self IQUESTS WP2 Interim analysis of interviews May 2011

31. and more questions • Are there ways to help people self-manage early on? • How can services be flexible and resourced to offer tailored help at the right time? • How can all therapists and staff have excellent human qualities, knowledge and behaviours? IQUESTS WP2 Interim analysis of interviews May 2011

32. Thank you IQUESTS WP2 Interim analysis of interviews May 2011