The analysis focuses on participants' responses of i) the value placed on involving relatives in RP and ii) the potential barriers to involving relatives routinely in such interventions.
Value of involving relatives
Participants from each group recognized some value in involving a relative in RP, with benefits identified for relatives, SUs and CCS (See Table
4). Values were 'understanding bipolar disorder', 'relative's role in the management of BD', and 'the relationship between CC, SU and relative (R)'.
Table 4
Value and barriers of involving a relative in relapse prevention for relatives, service users and care coordinators
Value
| • Increases understanding of bipolar disorder, triggers and EWS • Gives relatives a role - empowering • Recognize need to seek help earlier - important in a crisis • Improves relationship with service users • Improves relationship with mental health services | • Provide insight into triggers and EWS • Another 'pair of eyes' to recognize EWS and triggers • Increased support during a crisis • Improves relationship with relative | • Provide insight into triggers and EWS • Another 'pair of eyes' to monitor service user • Improves contact during a crisis • Improves relationship with relative |
Barriers
| • Conflict with work and other commitments • No suitable relative to take part • Not wanting to intrude on relationship between Service User and Care coordinator | • Want to keep illness and issues private from family • Want to keep family issues private from CC • Did not want to burden family members • Fear increased monitoring will lead to increase misattribution of normal emotions and behaviors • Concern over placing relatives in position of power • Families were a source of stress and trigger to relapse • Relationship with CC is exclusive from relatives | • Takes longer • Informal increase of caseload • Have to maintain confidentiality of service user • Difficulty dealing with family dynamic within sessions • Unconfident as therapists |
Understanding bipolar disorder
RP was perceived to have increased relatives' understanding of bipolar disorder. Consequently, they were able to make sense of past behavior;
With bipolar...sometimes it's easier with the patients. It's the relatives who can't get their heads round what was going on and why this person suddenly hated them...did all these bizarre things (76: CC)
Through RP relatives gained further understanding of triggers and early warning signs to relapse, distinguishing between emotions and behaviors that were normal and those that were symptoms and required action. This gave them a perception of having some control over events and was experienced as empowering;
For the first time ever I thought, we are not being disempowered, we are being empowered and for families with bipolar. That's rare (63: R)
Both partners and the participants, I think they felt to a degree a little bit more empowered in the situation. That they have a little more knowledge and a little bit more control knowing what may happen. (39: CC)
Role in management of bipolar disorder
RP provided relatives with a new role (or legitimized a role they had already been undertaking) - that of monitoring SUs mood and behavior. This was especially valued by CCs who identified relatives as being ideally positioned to act as 'another pair of eyes and ears, doing some monitoring' (16: CC). SUs also valued relatives being able to help them monitor their mood and behavior. Relatives helped recognize triggers and early warning signs, often contributing information that SUs were unaware of themselves;
My memory is pretty patchy over the things that have happened...she is able to answer questions that I honestly, I can't answer (33: SU)
I would think that fundamentally if you are not really getting somebody else involved in it, you are maybe knocking 30% off the value of what you are doing away because you are losing somebody else having insight into what is happening if these people aren't picking it up even, you know (39: CC)
Inviting relatives to monitor symptoms was perceived as greatly increasing the likelihood of recognizing early warning signs. By being aware of, and recognizing signs to relapse earlier, relatives had an active role in RP. Furthermore, RP helped relatives see the benefits of seeking help from the services at the appropriate time. Consequently they reported feeling less anxious about the prospect of a relapse and hopeful that they were now equipped to be able to recognize early warning signs, intervene and prevent an episode;
I am a lot more confident that I can deal with it if it happened again, and the first thing I would do is make sure that she got a much earlier assessment from the GP and the consultant, and if necessary get her voluntarily into hospital early....I have recognized now that the longer it goes on the worse it goes. (35: R)
Relationships between CC, SU and relative
All groups felt that relationships between family members, CCs and services were pivotal. Taking part in an RP intervention provided relatives with an opportunity to be much more involved in service provision and forge a relationship with the CC;
I have more contact with the family since [doing RP]... [Previously] the partners just tended to busy themselves in the kitchen (39: CC)
CCs reported relatives being much more actively involved since the intervention. By having an opportunity to engage with and develop a rapport with services, relatives knew who to contact within the care team and had confidence that they would be listened to. This is especially important during a crisis as relatives were often the first point of contact with services;
Now I feel very much part of it as well, and I know that I can ring up...If he was becoming ill I would ring up and ask the CPN to come round. She is very good (33: R)
As well as the potential to enhance the relationship between family members and CCs, RP could also improve relationships between SUs and relatives. RP provided an opportunity to talk together about past events, and the impact of bipolar disorder on themselves and the family;
I think he [service user] was quite relieved really that he could discuss things with her [wife] that he hadn't talked about in the past. And quite relieved that she had a better understanding of how he was (28: CC)
Some CCs reported that an increased understanding between the SU and their relative had led to their relationship being less stressful and pressured and that as a consequence novel information was shared;
It's very good...to get the carer and the client actually sitting together and talking about it...you know quite a few things that came out of it. (14: CC)
However, this was not always that case; sometimes information would be withheld because relatives were present;
I suppose some of the things that he may have discussed if we had been in our normal therapeutic sessions. We didn't discuss some things. (28: CC)
Barriers to involving a relative in relapse prevention
Despite the various benefits RP could bring to the individuals, a range of barriers to involving a relative in RP were identified by all groups of participants.
Time
A reason often cited by relatives for why they hadn't chosen to get involved in RP was lack of time or work commitments. CCs often visit SUs during the working day, making it practically difficult for some family members to attend sessions. However the same relatives also described elsewhere how RP could save time by preventing a relapse;
If you nip it in the bud, it can save you months and months of heartache (31: R)
The data revealed far more complex reasons for relatives not being involved in RP. These were associated with; the family dynamic; autonomy and privacy; and professional burden.
Family dynamic
For some SUs a suitable family member could not be identified to take part in RP. Thirty-two per cent of the trial sample did not have a relative who they had sufficient face-to-face contact with to be eligible for the intervention. Others had relatives with whom they had the required 10 hours contact per week, but felt giving their relative the role of 'carer' was inappropriate;
My younger sister didn't [take part]...it's difficult with her because she is sort of quite looked-up to me...she is 14 years younger than me, so she is more my little sister and I am her big brother type of thing. (20: SU)
Families could also themselves be a source of stress and a trigger to relapse. Many described hostile and critical relatives who they distrusted to take on decision-making responsibilities;
On all of the occasions that I have been sectioned they have asked me who do you want as your loco parenti, next of kin? And I have always said 'duty social worker'. I would never, ever, ever have my mother and father involved in decisions regarding my care (19: SU)
Involving critical families also raised concerns as it placed them in a position of power which they might manipulate;
There is odd times jokingly she [mother] will say to me I am going to ring [care coordinator]. I know what that means, so I go quiet (13: SU)
Autonomy and privacy
Some SUs described wanting to keep their illness, and their management of their illness, private from their family. For some this was because of the stigma of the condition;
I have never talked to them about my symptoms or anything like that...they probably wouldn't understand...maybe they would think I was a freak or something (9: SU)
Others did not want to burden their relative with decisions (I will carry that load myself; 21: SU) or problems and felt they alone were responsible for managing their illness. Some were fearful that by increasing a relatives' role in monitoring symptoms they could potentially become overly watchful and misattribute normal emotions as early warning signs which could exacerbate matters.
Her family take a keen interest in her sleep and her mood and sometimes you can see that she gets quite frustrated with that. I mean one bad night and they magnify it and she kind of wants to minimise them but they maximise them. (33: CC)
Many SUs were unused to having their family member involved in their relationship or in contact with mental health services. Generally, the relationship with CCs was valued by SUs and each party recognized that at times it would indeed be inappropriate to involve relatives;
You do need time alone with the client because some of the pressure in their life might actually be with their partner, or there might be things that are happening in their life, they don't want their partner to know about, so you do need that time with them themselves (39: CC)
I wanted to talk to her [CC] the other week but [husband] was sitting there... I didn't talk and then as she was leaving I just said I needed to talk to you today, she said ok, well you are coming down Thursday anyway aren't you she said, we will have a talk then (35: SU)
Relatives also described feeling uncomfortable about 'intruding' on the established relationship between SU and CCs. Additionally, there were family issues that SUs were reluctant for their relatives to discuss with their CC, particularly since they had a less well-established relationship;
They [parents] did have the option to do it, but I wouldn't let them...when I were 14 there was something what happened in my family...I don't think it were fair...for my mom to talk about it (14: SU)
Ultimately for CCs, if SUs didn't want their relative involved, they had to respect that and abide by their wishes.
Some people don't want any confidential details discussed with the family...you can't do it without their permission (6: CC)
Professional burden
Having a relative present during sessions and the difficulty in maintaining SUs confidentiality was something CCs needed to manage;
It's very personal...there was a lot of drugs involved I think that her mom didn't know about, and I did explain that we could actually omit that part...she didn't have to know about that part. But...she still didn't want to do it [involve mother in RP]. (48: CC)
For many CCs, delivering RP with a patient was already a new role and added burden to their workload and time. Involving relatives involved further additional work. Firstly it was perceived to increase the frequency and lengths of visits to their client;
You are explaining each session, that takes up a lot and part of it we did with [SU's] husband involved because he was critical anyway of her illness, that took longer because then he wanted explanations. It actually did him good because it changed his attitude about the illness...but it did take a long time (76: CC)
Secondly it was viewed as informally increasing their caseload since in effect they were taking on relatives as clients;
She [relative] was quite tearful and 1 or 2 of the sessions I saw her after the session as well for some individual support. So it increased my work load (28: CC)
Sessions themselves became more complex when family members were present. At times it was difficult to keep the focus on RP as relatives often wanted to talk about their own problems and needs. In addition, managing family dynamics such as guilt, shame and disagreements was reported as being challenging for many CCs;
They argued in the session, so that was difficult managing that, there was a lot of blame within that session (28: CC)
As a consequence CCs sometimes did not encourage their involvement;
So when the person sort of says no I don't want family involved...I think you would be very tempted to sort of brush over it and say, great ok, no problem, because you think God how am I going to cope with them anyway (48: CC)
On the whole CCs were very experienced, with an average of seven years working in the community mental health team and having an average of six clients with BD on their caseload (See Table
2). However, the role of
therapist was evidently novel and many were unconfident in working with families in this way. Consequently there was a level of concern about being observed performing in this role;
I think it could be that care coordinators don't encourage it [relative's involvement] enough, they feel unsure of it themselves, or standing there doing it on your own, I don't know whether that [involving a relative] would be just a bit too much (48: CC)
This was something that relatives were also aware of. In this example a relative, who felt discouraged to take part in the intervention, reflected that it may have been because the CC felt threatened by the relative's own experience as a more experienced therapist.
My feeling was, she didn't really want me to be there...because of my background in counseling (63: R)