interim analysis of interviews understanding self-management of longer-term depression: learning...

Interim analysis of interviewsUnderstanding self-management of

longer-term depression: learning from the patient

IQuESTS Work package 2.

Eleni Chambers, Sarah Cook,

Anna Thake, Alexis Kilgarriff, Sue Shaw

Enquiries to: [[email protected]]

1IQUESTS WP2 Interim analysis of

interviews May 2011

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?


interviews May 2011

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


interviews May 2011

Age groups 18 - 35 236 - 55 256 - 75 376 + 0

Gender Female 4Male 3

Ethnicity White 7BME 0

Severity of depression Mild or moderate 3Severe 4

Length of depression Average 21 yearsRange 5 - 40 years

Type of depression Dysthymia and Recurrent depression 2Persistent Major depression 2Recurrent depression 3

Other health problems* Physical health 5Mental health 1None 2

Services used* Primary 7Secondary 6

* some more than one category Voluntary 6

Characteristics of the 7 people interviewed


interviews May 2011

This diagram gives an overview of the many and varied ways that people self managed and talked about their experiences of longer term depression


interviews May 2011

Major themes


interviews May 2011

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


interviews May 2011

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)


interviews May 2011

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)


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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)


interviews May 2011

Overarching theme: Changes

• Learning over time• Conscious• Forced• Giving up• Natural• Resistance


interviews May 2011

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)


interviews May 2011

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)


interviews May 2011

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)


interviews May 2011

Specific themes

• The greyness of depression• Oneself• The process and effects of self-

management• Therapy• Service organisational issues


interviews May 2011

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?


interviews May 2011

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)


interviews May 2011

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)


interviews May 2011

Fear of depression returning

• “When I do begin to get 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)


interviews May 2011

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)


interviews May 2011

Oneself

• Self-awareness• Acceptance of self• Self-compassion• Self-worth• Confidence• Hope• Identity• Self-advocacy• Gratefulness• Being true to yourself• Resilience• Knowledgeable


interviews May 2011

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)


interviews May 2011

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


interviews May 2011

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

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?


interviews May 2011

Therapy

• Therapy that suits me• Knowledge of• Access to therapy• Frequency• Tools and strategies• Destabilising


interviews May 2011

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)


interviews May 2011

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)


interviews May 2011

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


interviews May 2011

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


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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?


interviews May 2011

Thank you


interviews May 2011

interim analysis of interviews understanding self-management of longer-term depression: learning...

Documents

self management

management individuality

selfmanagement strategy

major themes

management importance

overarching themes

patient iquests work

people self managed