Quantitative

Service users were asked how closely they followed their treatment recommendations, and 46% (n = 16) reported following recommendations exactly. However, when asked to describe the different ways in which they did something different to recommendations, while 54% (n = 19) reported intentional non-adherence, 71% (n = 25) reported unintentional non-adherence, with a total of 77% (n = 27) doing something different to recommendations. That is, half of those (n = 8) who reported following treatment recommendations exactly then went on to describe occasions on which they were unintentionally non-adherent. Of those who reported intentional non-adherence, roughly half were intentionally non-adherent at least twice a month; likewise, of those who were unintentionally non-adherent, roughly half were unintentionally non-adherent at least twice a month (Table 1).

Table 1 What service users do: self-reported service user behaviours Full size table

Service users reported their expectations and the outcomes of intentionally doing something different to treatment recommendations. On 55% of those occasions when service users had a positive expectation (including expectations of no change), they also experienced a positive outcome (including outcomes of no change). On 45% of those occasions when service users expected a positive outcome (including expectations of no change), they experienced a negative outcome. On all of those occasions when service users had a negative expectation, they then experienced a negative outcome. Notably, while on the majority of occasions of intentional non-adherence, service users had positive expectations, there were still some occasions (n = 5) on which service users chose not to follow recommendations despite expecting negative consequences (Table 2).

Table 2 Service user expectations and outcomes: self-reported service user behaviours Full size table

Thirty-four percent (n = 12) of service users reported that they would like to change the way they followed their treatment recommendations, with 20% (n = 7) wanting to follow them more closely and 14% (n = 5) less closely. Sixty-six percent (n = 23) did not want to change the way they followed recommendations. Of those who did not want to change the way they followed their recommendations, only 57% (n = 13) reported that they followed recommendations exactly. This means that nearly a third of service users (29%, n = 10) did not take medication as recommended and were happy with their level of adherence (Table 3).

Table 3 Service user desire to change/not change treatment behaviour Full size table

Service users were asked to rate their satisfaction with their current medication on a scale of 1 (not at all satisfied) to 5 (very satisfied) (Figure 1). They were also asked to rate their satisfaction with their current support (Figure 2). There was a significant positive correlation between satisfaction with support and satisfaction with medication received (r S = 0.43, N = 35, p = 0.01).

Figure 1 Service user satisfaction with medication. Full size image

Figure 2 Service user satisfaction with support. Full size image

Qualitative: Thematic analysis

Three main themes were identified: ‘Living well for self and others’; ‘Obstacles to adherence’; ‘Therapeutic support’.

Living well for self and others

Subthemes: ‘Staying well and avoiding negative consequences’; ‘Managing side-effects and symptoms’

The reasons service users gave for either following or intentionally not following treatment recommendations can be analysed under the theme ‘Living well for self and others’. That is, service-users made decisions about their treatment recommendations in order to live as well as possible with the symptoms of their diagnosis and the side-effects of medications, with decision-making taking place in response to the demands of everyday living.

The reasons given by service users for always or sometimes following recommendations formed the subtheme ‘Staying well and avoiding negative consequences’. Treatment recommendations were adhered to insofar as medication was seen as necessary to stay well and live as good a life as possible or insofar as it was necessary to avoid negative consequences

“To stay in one piece, stay balanced” (P13)

“In order to get the very best out of life and remain safe” (P1)

“Meds keep my head just above water, failing taking them…I and people around me pay the price” (P41)

“Scared of being sectioned and I dislike some of the Schizophrenia symptoms” (P35)

This subtheme was further supported by service users’ reasons for satisfaction with their current medication

“As long as I’m on medication I haven’t been ill” (P11)

“I started to get my life back and have some degree of normality” (P39)

Conversely, dissatisfaction with current medication appeared to reflect the ways in which medication failed to support ‘living well’, for example problems with side-effects, lack of efficacy in controlling symptoms or the burdens associated with following a treatment course:

“long term health effects and side effects. It’s toxic” (P28)

“I was once very active and went to the gym 4 times a week, now I have become lethargic and fatigued from my medication” (P23)

“I still suffer from intrusive and painful thought disturbance” (P1)

“… monthly or fortnightly my mood drops and I have a severe depression lasting about a week” (P41)

“I am really fed up with … having to have a blood test every four weeks” (P35)

“I just wish I didn’t need to take so much medication” (P19)

The reasons given by service users for intentionally doing something different to their treatment recommendations informed the subtheme ‘Managing side-effects and symptoms’. Here there was still a concern with living well, and changes were made in order to manage side-effects and symptoms in a way that enabled service users to live with the difficulties associated with their diagnosis and medication. Those who took more medication tended to frame their reasons in terms of managing symptoms; those who took less mediation tended to frame their reasons in terms of managing side-effects, although some service users reported taking less medication because they felt well

“I started feeling depressed and wanted to increase my dose so I slept through the day” (P18)

“Intensity of voices made it hard to cope” (P3)

“Didn’t like the sedative side effects” (P15)

“I had a meeting at work the next day so skipped my evening dose” (P9)

“I had been coping well for a significant period of time” (P33)

“I feel okay on less and see no reason to take more” (P39)

Changing the time of medication tended to be associated with managing sleep patterns and tiredness

“I was working nights and needed to feel alert during the night” (P9)

“Took antidepressants once a day rather than twice a day, to have more energy during the day” (P3)

Obstacles to adherence

Subthemes: ‘Feeling well enough’; ‘Contending with side-effects and symptoms’

Service users were asked to select from a list of options that best described the reasons for their unintentional non-adherence (Table 1). Analysis of the service users’ accounts of their unintentional non-adherence suggested the theme ‘Obstacles to adherence’ with 2 subthemes, ‘Feeling well enough’ and ‘Contending with side-effects and symptoms’.

Thus although 17 service users reported that they had forgotten to take medication (Table 1), within this group the experiences described differed notably. For some, forgetting appeared to be a function of ‘Feeling well enough’, that is, of a remission of symptoms and/or being busy or generally engaged with everyday life

“Just forgot too busy at work” (P15)

“Somehow I forgot to take the medication, maybe because I was feeling well” (P25)

For others ‘forgetting’ was part of the experience of “Contending with side-effects and symptoms”

“last night I forgot to take my lithium because I was too tired and didn’t want to feel sick” (P23)

“Last week, was awake for three days did not take any medicine during this period” (P14)

This also incorporated aspects of loss of motivation:as well as the experience of symptoms directly impacting on adherence, including delusional thoughts or fears about medication, hopelessness, hallucinations, mania or beliefs about the impact of non-adherence on symptoms

“too mentally and physically tired to get out of bed and fetch medication/water” (P27)

“I didn't feel like doing anything and taking medication was one of those things” (P37)

“I wanted to know what I really thought and I believed that the medication was controlling my thoughts - so it had to be stopped” (P35)

“Too low felt there was no point as was going to kill myself anyway” (P15)

“I am hearing bad voices and they sometimes tell me that the medication is poison” (P7)

“I was high as a kite” (P4)

“Thought I might feel better if dose missed occasionally” (P16)

Further, where service users reported practical difficulties these might sometimes be understood as combining with side-effects or symptoms with a resulting increased impact

“I was stuck in a flat with little energy after being on two lots of medication sleeping 16 hours or more with no transport” (P24)

One shared element of the two themes presented so far is the way in which decision-making and behaviour tends to be in response to the day-to-day challenges and demands of living with a severe and enduring mental illness, rather than on longer term considerations. This will be discussed below.

Therapeutic support

Subthemes: ‘Enabling and disabling communication’; ‘Supporting the person’

The role of the therapeutic relationship featured in service user accounts in a number of ways, analysed under the theme ‘Therapeutic support’ with the subthemes ‘Enabling and disabling communication’ and ‘Supporting the person’.

Good experiences of communication were enabling in the sense that the service users felt supported and better able to manage their illness. However, in other cases communication was experienced as impaired and impairing, such that service users felt unable to communicate, or where attempts to communicate were met with a less than satisfactory response. Also informing this was the desire for more and better information to help support treatment choices.

Hence service users were asked whether they discussed the times when they had not followed treatment recommendations with their doctor. Some of the reasons for not discussing non-adherence related to concerns about the consequences, accessibility of health care professionals, or to the service user’s own state of mind

“in fear he may take me off the haloperidol” (P7)

“frightened of being sectioned” (P27)

“I don’t see the doctor for another 6 months” (P3)

“I didn’t want to interact with anyone” (P18)

“too ashamed” (P26)

In other cases service users described a relationship in which they felt trusted to make their own decisions, or appeared to trust themselves to make the decision

“When the ground rules were established with my recent GP, it was discussed that I could increase or decrease (by a small amount) my medication as and when required” (P33)

“the medication dosage works and I see no reason to change as I am not taking too much” (P8)

Where service users had discussed their non-adherence, this had in a number of cases resulted in a positive outcome

“my psychiatrist is going to review my anti d[epressant]” (P7)

“Slow release anti-depressant prescribed. So I only need to take it once a day” (P3)

However, in other cases there were blocks to communication, or communication resulted in a negative outcome

“I told the Dr the symptoms but wasn't honest about what medication I was taking less of” (P18)

“They were not willing to listen to the prescription mess up that had occurred and just said I had decided to stop taking meds myself” (P37)

“I was ‘bullied’ into taking a different medication” (P35)

The desire for more and better information to help support treatment choices included wanting to be informed about alternative treatments, more information about the long term effects of medication, and information about the effects of taking medication while pregnant

“Independent, unbiased information about my medication and other possible treatments” (P3)

“Information about long term consequences of the medications” (P10)

“Access to studies about my medication and pregnancy” (P9)

However, although making informed choices was perceived as important and providing information part of the role of the healthcare professional, there was also a clear need for emotional support, including stability of care, which informed the subtheme ‘Supporting the person’.

There were a substantial number of positive experiences of support from healthcare providers

“My psychiatrist is fantastic with email access and I have her mobile number” (P15)

“I have had excellent support from my GP and know that I could call him anytime and he would help in any way he could” (P33)

“I have access to different types of support when I need it and also touch base with professionals to check all is ok. I know I can ring my care co-ordinator whenever I need to” (P37)

Others described mixed experiences or a need for improved therapeutic support

“CPN very supportive. Psychiatrist being changed all the time” (P14)

“I get good support from my psychiatrist and my CPN but my GP is not approachable or involved” (P35)

“would like a CPN again (I used to have one) or a support worker/someone to talk to” (P27)

“I am not listened to regarding the side effects of my medication and no peer group support has been offered” (P9)

“I don't get any support unless I ask for it, and sometimes I am so cross I don't feel I can in what is considered an appropriate way, The doctor does not know me well, I had to change due to moving and they don't try to understand” (P2)

Here, being listened to and understood appears to be an important part of feeling supported, and a number of service users pointed to the lack of talking therapies. In addition, when asked what additional support they would like, participants expressed a desire for more talking therapies

“Do have some support but would prefer regular counselling and transport to it” (P24)

“I get medical attention I think I need except talking therapies” (P13)

“I think being offered some type of group or individual therapy would be really beneficial” (P18)

“More talking therapy and counselling to give me peace of mind” (P1)