Within the RCT, the number of emails sent by participants in the group receiving the online psychoeducation program with adjunctive peer support (n = 134, 73.9% female) ranged from 0 to 17, with 12.7% (n = 17) having sent no emails, 15.7% (n = 21) having sent only one email, and 71.6% (n = 96) having sent two or more emails. In this group, the average number of emails sent was 4.3 (SD = 3.8). Within the qualitative study, the number of emails sent by the sample of 44 participants (75% female) ranged from 1 to 15, with 4.6% (n = 2) sending only one email and 95.5% (n = 42) sending two or more emails. The average number of emails sent was 6.5 (SD = 3.7).
Of the four Informed Supporters who were involved in the study, three took part in face-to-face interviews: two males (aged 54 and 59 years) and one female (aged 28 years). The fourth Informed Supporter was not available.
Examples of all four peer support mechanisms were found in the qualitative data. Of the 104 text examples coded, 48.1% (n = 50) were categorised as advice grounded in experiential knowledge, 30.8% (n = 32) as social support, 6.7% (n = 7) as social comparison and 14.4% (n = 15) as helper therapy. The following are examples from the email interchange and interview transcripts, which express in rich detail the way in which the four mechanisms operated in the current sample.
Advice grounded in experiential knowledge
The email interchange revealed that many of the newly-diagnosed patients were interested in gaining a sense of what it was like to live with bipolar disorder.
“I have many questions which have to do with the experience more than the clinical side of things.” [Participant #10 (female, aged 40-49) reply to Informed Supporter #3 (female, aged 28)]
They expressed a need for practical strategies to help them cope with the symptoms and medication side effects, and the Informed Supporters were able to offer this assistance in a way that was both practical and empathic.
“With regard to your sense of the drug haze, I know it well, for me the point was to find a combination of drugs that didn’t leave me feeling like a zombie. I know the dilemma well, needing to control the labile swings and yet not appreciating the fog it leaves you in for most of the day…try taking your medication when it least affects your activity.” [Informed Supporter #2 (male, aged 59) reply to RCT participant #42 (female, aged 18-29)]
The Informed Supporters also reported that their own experiences gave them a unique perspective on bipolar disorder.
“… otherwise it’s only explained by doctors and clinicians, and they have a very specific view of the whole thing, and therefore their approach to it is technically orchestrated, whereas we’re not. We’re coming from a point of view of sensation, of feeling. So for me, it’s all about feelings, it’s all about the things that we go through as bipolar people, rather than the clinical understanding of it.” [Informed Supporter #2 (male, aged 59)]
Along with this, came the sense from Informed Supporters that they had an ability to communicate with the participants in a way that may differ from health professionals.
“… if I wanted to give them practical advice on things that they could do, I could maybe present it in a way that someone else couldn’t. Because I remember how it felt. So I can present it in a way that they can understand, or it won’t be too scary for them….I can communicate with them, like maybe someone without the experience can’t.” [Informed Supporter #3 (female, aged 28)]
The benefits of social support were discussed in a number of email exchanges, with some participants saying to their Informed Supporter that they were their only form of support.
“Thanks for the time and effort you are spending being a support person. I really appreciate it. It feels like the only link I have with any form of support.” [Participant #272 (female, aged 40-49) reply to Informed Supporter #1 (male, aged 54)]
“It was heartening when I did finally check my emails to see so many concerned ones when I've felt very alone.” [Participant #602 (female, aged 30-39) reply to Informed Supporter #2 (male, aged 59)]
The benefits derived from social support frequently were attributed to a sense of normalization surrounding the illness.
“It feels strange to read your accounts and think ‘Wow, I'm not the only one!’ [Participant #30 (female, aged 18-29) reply to Informed Supporter #2 (male, aged 59)]
“I guess the big revelation for me has been: I'M NOT ALONE…otherpeople experience this too!” [Participant #282 (male, aged 30-39) reply to Informed Supporter #2 (male, aged 59)]
Such feelings of being more socially connected were also reiterated by the Informed Supporters.
“Oh yes, there is great solidarity. Enormous solidarity. They’re like me, you know?” [Informed Supporter #1 (male, aged 54)]
The Informed Supporters reported feeling able to overcome participants’ sense of isolation by opening up a channel of communication and revealing a level of understanding garnered by their first-hand experience of the disorder. As expressed by one Informed Supporter:
“I really got the sense that the participants really needed that contact…they really wanted someone there to talk to.” [Informed Supporter #2 (male, aged 59)]
This theme was also reflected by some of the participants.
“How wonderful it is to talk with someone else with whom I can share a journey and understand openly and honestly with, without getting too embarrassed.” [Participant #252 (female, aged 40-49) reply to Informed Supporter #2 (male, aged 59)]
Social comparison between the RCT participants and Informed Supporters was evident in a number of the email exchanges, and appeared to have the effect of promoting hope and motivation on the part of the participants.
“It's great that the bipolar doesn't affect you too much these days. There is hope then, I'm glad.” [Participant #259 (female, aged 40-49) reply to Informed Supporter #1 (male, aged 54)]
“… since being diagnosed I have not yet meet anyone that I know shares this disorder. It is nice just to know that someone does and that someone is living a normal life despite this diagnosis.” [Participant #267 (female, aged 18-29) reply to Informed Supporter #2 (male, aged 59)]
There were several instances where social comparison appeared to have positive effects on the participants in terms of promoting faith in the effectiveness of treatment strategies.
“I'm looking forward to CBT so I could accurately identify triggers to my behavior, much like you are able.” [Participant #559 (female, aged 18-29) reply to Informed Supporter #4 (female, aged 29)]
The Informed Supporters responded by reinforcing the importance of maintaining relationships with health professionals, and of adopting a proactive and collaborative approach to treatment.
“I personally have had the same doctor for all this time, and we, note WE, have changed medication 4 times over that 14 year period. I hasten to add that I have never been better/weller/happier, so I really am advocating becoming knowledgeable as you can about treatment options, and vigorously and democratically pursuing those options.” [Informed Supporter #1 (male, aged 54) reply to participant #102 (female, aged 40-49)]
This extended to promoting adherence to medication.
“I too felt like a guinea pig, but eventually with the help of my psychiatrist we found the right combination, it took time believe me. Hang in there and truly believe that the people helping you do know what they are doing, they have seen it all before, despite the fact that you feel the way you do.” [Informed Supporter #2 (male, aged 59) reply to participant #86 (female, aged 18-29)]
The Informed Supporters reinforced the importance and effectiveness of stay well plans in managing mood episodes.
“On that point, the interesting thing you said was that you fear the return of bad times…I know the feeling very well, it is a constant concern at first…that is until you begin to notice the level of distress is much less if in fact you maintain your medication and keep to your stay well plan you have laid out for yourself. I agree, it is a worry to think that you are going to deal with it all again but believe me the episodes are far less stressful when there is a plan of action.” [Informed Supporter #2 (male, aged 59) reply to participant #24 (female, aged 40-49)]
The Informed Supporters appeared to gain a number of benefits from their role. These manifested as a greater awareness of strategies they could use in the management of their own condition.
“It was actually helping me as well, because I was always rethinking the topic at hand and how best to deal with a certain situation. I’m always honing my own skills because even though my bipolar is manageable, it still has to be managed.…the main thing that it’s done is really teach me how much it’s an action-based recovery. Without the action, there is no recovery.” [Informed Supporter #3 (female, aged 28)]
“The fact that I am involved in something that is a part of my own well-being and sense of being. So this Informed Supporter program helps me do that because it keeps me on track. It keeps me thinking about my own health and wellbeing. The searching for explanations for my own illness, for my own feelings, the search for rationale for being who I am has developed through the Informed Supporter program. I’ve come to understand bipolar disorder, I suppose…a lot quicker because of this program.” [Informed Supporter #2 (male, aged 59)]
The Informed Supporters also reported that their role had given them a greater sense of competence, and connectedness to the mental health system.
“I’m far more competent now than what I was initially…I think I’ve probably grown emotionally from this as well.” [Informed Supporter #1 (male, aged 54)]
“I’m not battling this by myself, there’s a whole bunch of other people involved in making this work so I’m part of the cog…a cog in the machine. So that motivates me, to play a positive role.” [Informed Supporter #2 (male, aged 59)]
The reciprocal relationship between the RCT participants and the Informed Supporters also appeared to have benefits for the Informed Supporters in terms of devising coping strategies.
“… at least you know what has to be done to counter the effects of the triggers that affect your function…Some of the actions you are aware that must be taken are spot on…Well done, in fact I am going to implement some of those things for myself, thank you…”. [Informed Supporter #2 (male, aged 59)] reply to RCT participant #28 (female, aged 18-29)]