Secondary Thematic analysis - IBiD Development

The data from the secondary thematic analysis of the interviews were organised into three themes which comprise key components identified for intervention development (Horne, 2012). These consist of recommendations for;

- Content - The specific information people diagnosed and prescribed treatment for BD should be provided with.

- Delivery - How the information should be provided, the mode or format of delivery including the providers of information or support.

- Context - Where and when information or support should be provided.

These components and the subthemes within them are illustrated in Table 4.3 with example coded text.

Table 4.3: Themes and example extracts from Primary Thematic analysis Intervention

component Subthemes Example coded text

Content

Information on bipolar, symptoms and positive reassurance

When I first got diagnosed I had no information.

if you take medications you can be controlled and you can live a healthy life

Information on

medications, side-effects and medication choices

I think maybe if the doctor had been able to say to me, even my GP had said, look, I will try you on this medication and it might not be suitable for you.

One of the things that I think is vital is the side effects, knowing what the side effects are likely to be and if there is anything you can do about them I think

Sources of further information

And also with a number to contact to speak to somebody if they had any other questions, speak to somebody knowledgeable.

Delivery

Opinions of written information

I think writing would actually be nice and I might consider speaking to maybe my support worker or even my key worker.

I think that there should be almost like a booklet

Support groups

It makes me think I have thought of going sometime ago and maybe it would be helpful to go and see what other people say.

I found that they were more people who was really ill and I couldn’t relate to them

Internet

If I were looking on the internet then I would know that some sites, you can tell which sites are rubbish and which sites have good information. I would trust things like MIND and NHS websites.

Trusted sources of information

I would go to the AOT for anything like that to the Outreach team. I’d use them rather than my own GP

I do trust what psychiatrists tell me and what CPNs tell me

Context

Readiness and desire to take in information can go up and down anything more about it at the moment.

later on, to know, later on is to know, the best thing to do is stabilise somebody first

I mean I wouldn’t take in a leaflet when I was in psychosis, so only afterwards.

So even though I was high it was still good to be receiving information.

Tailoring to level of understanding and desire for detail

Some people will be bright take it [information about

medication] and automatically and they’ll do what I done with.

I think I feel that although I haven’t been told much, I’m quite happy with that.

4.5.3.1 Content

4.5.3.1.1 Information on bipolar, symptoms and positive reassurance

Some participants reported having received no information about the condition itself. It would have been useful to receive this information and participants reported needing more

information even years after diagnosis.

P: “… if somebody was saying to me, you’ve got bipolar and this is a little bit about your illness. It’s never come across to me as far as I can remember.”

I: “Would it have been helpful to have…”

P: “Very. I’d like to know more about it.” (P10: Female, 45yrs, 7yrs since diagnosis)

P: “I’d say I understand my illness, but I don’t know if I know enough about it. Are there bits that I don’t know? Are you with me?” (P10: Female, 45yrs, 7yrs since diagnosis)

The different signs and symptoms of episodes (the variety and not just typical signs) were crucial pieces of information allowing participants to begin to learn and recognise personal signs and symptoms.

P: “You get the classic people saying, you know, ‘do you spend a lot?’ and ‘do you whatever?’ and go through the questionnaire. ‘Do you make rash decisions?’ Yeah, yeah, yeah, definitely, definitely, definitely. It isn’t, it doesn’t really sum it up. […] I remember picking up after my recent manic episode, picking up my bipolar disorder survival guide and it said, what people are in mania they usually say, oh, I’m in control and I’m really

confident at the moment. I found myself saying that exact phrase to my mate the week previous. It’s with hindsight and experience that I can, it’s almost like I need the

information now but the information helps me to understand my past.” (P9: Female, 33 yrs, 10yrs since diagnosis)

Information on the long-term nature of BD were seen as important for people to know,

however, it was also important to emphasise positives for people diagnosed with BD, that they can live well, cope with the condition and lead a worthwhile life.

P: “And also realising it can go on for life as well. I can’t see, I can’t see them ever taking me off them.” (P1: Female, 54yrs, 26yrs since diagnosis)

P: “I guess it was just the idea that erm, it’s very difficult to predict what’s going to happen, but that if you take medications you can be controlled and you can live a healthy life, as long as you take the medication, I guess.” (P7: Female, 30yrs, 1 ½yrs since diagnosis)

4.5.3.1.2 Information on medications, side-effects and medication choices

Participants lacked information about their medication and recalled being prescribed treatment but not being informed fully about this or about different options which might be available.

P: “Obviously Dr [name] is my consultant Psychiatrist here and I do respect him and what he’s doing is clearly having benefits kind of thing, but he hasn’t directly told me a great deal about, we haven’t sat down for example and had a conversation about ‘[name], you’re on Seroxyl and Seroxyl does this and these are the biochemical implications and this is the’ we haven’t had that discussion. It’s been very much kind of ‘You’ll go onto this medication’.” (P2: Male, 36yrs, 4mths since diagnosis)

Specific information seen as essential was; possible side effects, the risk of these occurring, medications you can take to alleviate these and the possibility of trying different medications

to find those with the least side-effects. One participant noted that experiencing unexpected side-effects could lead to treatment non-adherence. However, some participants found that detailed side-effect information can be overwhelming, confusing or contradictory.

P: “Yeah, going back to the first medication that I tried. I would like to have known, like suddenly I felt quite dulled down and quite like flat, and no one sort of said to me, well there are alternatives, you shouldn’t be feeling like this, you can try other things.” (P6:

Female, 24yrs, 4yrs since diagnosis)

P: “What I didn’t realise until my friend was a psychiatric nurse told me was that there is a drug that’s available that you can use for the side effects. I didn’t know that either. I feel like I’m learning all the time. “(P9: Female, 33yrs, 10yrs since diagnosis)

P: “I didn’t know about the weight gain with the Sodium Valproate until I went on the internet and I was like, why am I putting on so much weight.”

I: “If you’d had that sort of information, what difference would that have made?”

P: “I wouldn’t have gone on that one. I would have chosen something else. I wouldn’t have gone on it. I’m sure I’ve got a bit of body dysmorphia so there is no way I would have gone on that one. As soon as I started putting on weight, the likelihood is I’m going to come off it and then I’m likely to go manic or depressed.” (P9: Female, 33yrs, 10yrs since diagnosis) P: “I just find them [leaflets in the medication box] strange with possible side effects contradict each other, you know. They say it causes dizziness and another one says it doesn’t. A lot of them are contradictory.” (P1: Female, 54yrs, 26 yrs since diagnosis not reported)

Information should be straightforward, accurate and also realistic about the potential benefits of medication. Recognising that there were pros and cons of medication for BD was key in allowing people to make informed decisions around treatment.

P: “But maybe, side effects definitely. Especially life threatening and long term side effects.

I’d like to know the good things. I really would like to know the good things [benefits of medication].” (P1: Female, 54yrs, 26yrs since diagnosis)

P: “That it does something very good for you if you take it and you can weigh up the side effects against the benefits.” (P8: Female, 30yrs, 10yrs since diagnosis)

Other information which participants thought was important included; reassurance that it could take time to find the right treatment, information about medication and alcohol; what the medications do and how to take them, drug interactions and instructions not to stop medication without advice.

P: “To actually tell someone that they will go through a period of time and they will go through and not they might, they will go through a time where they might—they will have to try different medications and find which one suits them.” (P9: Female, 33 yrs, 10yrs since diagnosis)

P: “I think it’s a little bit ambitious with these products to say, do not drink alcohol. A lot of people will drink alcohol. I’ve learned that I can’t drink wine. I can drink beer, but I can’t drink wine. I can’t drink too much.” (P9: Female, 33yrs, 10yrs since diagnosis)

I: “What was good about the booklet and the DVD [participant had previously received].”

P: “Informative. It explained everything about the drug and how to take it etc, etc.[..] it and what you’ve got to be careful of blah, blah.” (P11: Female, 52 yrs, 25yrs since diagnosis) P: “Maybe where to find out more, if you need. Other things you shouldn’t take with it.

That’s about it, really.” (P7: Female, 30yrs, 1 ½yrs since diagnosis)

P: “Not to just take themselves off medication and always ring this helpline or this number or whatever before you do it on that day.” (P9: Female, 33yrs, 10yrs since diagnosis)

4.5.3.1.3 Sources of further information

Participants identified the importance of being signposted to sources of additional information or support so they are informed and empowered to find the information they need and also what to do in an emergency and where to go for help.

P: “…and also with a number to contact to speak to somebody if they had any other questions, speak to somebody knowledgeable.” (P7: Female, 30yrs, 1 ½yrs since diagnosis) P: “If you could have a bipolar survival pack from the hospital with numbers and sources that they thought were good and a way of recommending other sources back to them. That would be great.” (P9: Female, 33yrs, 10yrs since diagnosis)

4.5.3.2 Delivery mode

4.5.3.2.1 Opinions of written information

Many participants were positive about written information either that they had received or that they thought would be useful to convey the information people might need. However, it was important that information was concise and presented in language that was easy to understand.

I: “Would it be something that you’d want in writing or would you want somebody to talk to you?”

P: “I don’t know. I think writing would actually be nice and I might consider speaking to maybe my support worker or even my key worker.” (P10: Female, 45yrs, 7yrs since diagnosis)

P: “I think that there should be almost like a booklet, not a pamphlet but a booklet where you just you know describing, basically the symptoms and the help group, Manic

Depression Fellowship.” (P11: Female, 52yrs, 25yrs since diagnosis)

P: “I’m not a genius but I’ve got a reasonable brain and frankly some of the information in the [medication] boxes baffles me. Why use long complicated words when you can just put stuff in plain English? And that frankly is where charities and stuff tend to be much more helpful in that they make the subject both understandable but relevant to the reader, or the audience, that they’re targeting.” (P2: Male, 36yrs, 4mths since diagnosis)

Participants reflected that it is useful to have a combination of written information and the opportunity to speak with someone and have questions answered. A personalised, tailored approach is important and when they are prescribed medication, it is important to be able to speak with someone about their treatment.

P: “I’d probably keep a copy. I’d read It [a leaflet], it would probably prompt some questions and I would go back to Dr [name] and I would ask him what his opinion and answers were kind of thing.” (P2: Male, 36yrs, 4mths since diagnosis)

P: “I read the leaflet whenever I’m given any new medication, so I read the leaflet, the pharmacy leaflet inside. I also talk to the psychiatrist, my GP, to the, I haven’t got a care co-ordinator at the moment. My care co-ordinator left and they thought I’d be fine without one, so but I would have talked this over with the care co-ordinator.” (P3: Female, 55yrs, 4

½yrs since diagnosis)

P: “I guess it would be written information that you are given, because you, if you are depressed you are not going to be keen to find out much or read at that time, but you would have it for a time when you could or when you are able to take in information. […]

And also with a number to contact to speak to somebody if they had any other questions, speak to somebody knowledgeable.” (P7: Female, 30yrs, 1 ½yrs since diagnosis)

4.5.3.2.2 Support groups

Support groups were discussed by a number of participants and there were mixed opinions of these. Some participants found they could not relate to other members of the group or did not want to speak about their diagnosis. One participant had found sharing her experiences with a trusted group of people was useful and felt now that attending a support group might be something to consider.

P: “But then I found that I actually went to some MDF meetings and I found them awful. I hated it. I felt that I wasn’t one of them. That was my problem and it wasn’t theirs. They were lovely. I hated it. I was sitting in a room with a friend of mine who took me and I was listening to all these people and I just thought, I’ve got nothing in common with them, absolutely nothing.” (P11: Female, 52yrs,25yrs since diagnosis)

P: “I’ve never gone along to the bipolar group. I know it exists and where to go but I’ve just, to begin with I never plucked up the courage and then since then I’ve sort of not felt the need but you saying it, it might be beneficial. I’ve got two or three friends now who also have mental health problems that I’ve met through the hospital being an in-patient or going to [community centre] which is one of the first help forums in the community and you know we can support each other and that’s nice, so there are other people that I’ve met or who have problems. We’ve got a sort of mini little support group.”

I: “You share experiences.”

P: “Yes, as it were there. But I haven’t joined formal support groups and you know you bringing it up it makes me think maybe I would like to go.” (P3: Female, 55yrs, 4 ½yrs since diagnosis)

4.5.3.2.3 Internet

Participants discussed their experience of and perceptions of the internet as a source of information about BD and medication. They were aware that caution was needed to identify trustworthy information sources. Participants had used the internet to find information about their medication and to share this with others. Personal stories featured on the internet had helped one participant as they were experiences he could relate to and found it reduced feelings of isolation. The advantage of information on the internet was that you could refer to it at any time and go back to useful information.

P: “In terms of the internet I think I really principally went on there because I had to try and explain to people at work what the hell was going on and I needed some background in terms of the medication. [..] But the internet was probably the most useful and immediate source and tool. Now, I think I ticked in there that I do trust it, which, am I that gullible? No, but generally I think I do. There are a number of sources on there, you’ve obviously got the NHS, as I recall there was some information on the NHS site about it. You can go to the, I think I went to the actual, some drug company information on it as well which, whilst I know that they’re obviously very happy to sell their tablets and all that sort of stuff and they’re private companies, the information on there was reasonably useful as I remember.”

(P2: Male, 36yrs, 4mths since diagnosis)

P: “I found that useful [web videos about bipolar], yes, both in terms of people’s experience of bipolar and how it affects them but also actually of the medication that they’re on [..]

But they are informative because they’re human basically, and just listening to somebody, he asks her questions about what was life like beforehand and it’s like the usual sort of shit, disorganised, confused, frustrated, describing and then he says “Explain to me what hypermania is like” and it’s just like oh my God, I can completely relate to that, when your to-do list becomes longer than 24 hours in a day, it’s like yes, it gets like that. And it’s very informative because not only do you learn something about bipolar and you learn

something about how the medication works but you also realise that you’re not the only one who’s thinking and feeling like that, which so often, more so at the depressive end of a manic episode than the hyper end, it’s a very isolating, intensively individual experience.”

(P2: Male, 36yrs, 4mths since diagnosis)

4.5.3.2.4 Trusted sources of information

When discussing trusted sources of information, participants frequently mentioned their own care team (specifically their mental health team) as being their point of contact. Health professionals were trusted sources of information as were mental health charities.

P: “You want to feel that someone has empathy and understands what it is, rather than just having the medical knowledge. [I] Trust psychiatrists, CPNs, I trust my psychotherapist because I think she’s very experienced and my friend who has had experience of similar problems and is a psychiatrist herself.” (P7: Female, 30yrs, 1 ½yrs since diagnosis)

P: “I suppose a psychiatrist is a bit more objective where they have a feel for people’s uncertainties, they are a bit more objective about it.” (P6: Female, 24yrs, 4yrs since diagnosis)

P: “Basically they [MIND charity] went to their drawers and got the information and said, if there is anything that I want to talk about that I could sit and talk about it with them. […]

MIND are absolutely out of this world.” (P8: Female, 30yrs, 10yrs since diagnosis) Other people with lived experience of BD were not consistently viewed as useful or trusted sources of information. Some found it reassuring to hear from the experiences of others, whereas some found it difficult to relate to other peoples’ bipolar experiences.

I: ”So what is it about speaking to other patients?”

P: “Well it is just refreshing that first of all I can relate to them and relate to their

medications, but you know what funnily enough is a lot of people don’t like talking about it and so it is quite frustrating from that point of view.” (P5: Male, 47yrs, 8yrs since diagnosis) P: “I am actually on a [online] forum. I joined that when I started kind of panicking really, just to meet other people with it really, because I had never met anyone in my real life who’s ever had it, so it is not to feel alone, that is not very cheesy isn’t it? You know it has really been just a source of information for chatting to other people, yeah, you know what they have experienced and things like that.” (P6: Female, 24yrs, 4yrs since diagnosis) P: “That is the frustrating thing about finding out information through others. It is that

medications, but you know what funnily enough is a lot of people don’t like talking about it and so it is quite frustrating from that point of view.” (P5: Male, 47yrs, 8yrs since diagnosis) P: “I am actually on a [online] forum. I joined that when I started kind of panicking really, just to meet other people with it really, because I had never met anyone in my real life who’s ever had it, so it is not to feel alone, that is not very cheesy isn’t it? You know it has really been just a source of information for chatting to other people, yeah, you know what they have experienced and things like that.” (P6: Female, 24yrs, 4yrs since diagnosis) P: “That is the frustrating thing about finding out information through others. It is that

In document Medication adherence in bipolar disorder: Understanding patients’ perspectives to inform intervention development (Page 120-133)