Results
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)]
Social support
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
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)]
Helper therapy
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)]
Discussion
This study explored the subjective experiences of individuals recently diagnosed with bipolar disorder who received an online psychoeducation program with adjunctive support from informed peer supporters. The aim of our qualitative study was to explore whether any of the mechanisms underlying the benefits of peer support in the management of chronic illness (experiential knowledge, social comparison, social support, and the helper therapy principle), emerged in the interactions between the participants and their peer supporters. To our knowledge, this is the first investigation of these factors in relation to the treatment of bipolar disorder. Our study is particularly interesting in that individuals with bipolar disorder are known to have difficulty in establishing and maintaining interpersonal relationships – a key mechanism through which peer support operates.
Advice grounded in experiential knowledge is typically pragmatic in nature. The practical strategies provided by the Informed Supporters complemented the information provided by the participants’ health professionals in assisting them to implement the lifestyle changes needed to effectively manage their illness. In the current study, participants asked their Informed Supporter for information on how to deal with the practical aspects of managing the illness, such as the side-effects of medication, how to inform others of their diagnosis, and how to deal with the impact of their bipolar disorder on their work and relationships. Many also voiced a desire to understand what it was like to live with the disorder long-term. The Informed Supporters were very helpful in addressing these concerns. They reported that having experienced bipolar disorder themselves gave them the ability to communicate practical strategies in ways that were meaningful to the participants, and served to highlight the role of an Informed Supporter in providing support and experience from a psychosocial and non-clinical perspective.
Two other mechanisms underpinning effective peer support that were examined in the present study were the motivational effects of participants comparing themselves to their Informed Supporter, and the positive impact of receiving additional social support. In the email interchanges, there were numerous examples of the participants expressing frustration with the mental health system or with their primary health professional. Changes to medication appeared to be a key source of this frustration, and after multiple medication changes, participants reported diminishing confidence in their ability to get well. In these situations, the Informed Supporters provided both a social support and a social comparison function.
First, the Informed Supporters provided emotional support and normalized the participants’ frustration. Their own experiences gave them the advantage of being able to sympathetically understand the participants’ experiences and illness. This type of understanding is rare in interactions between health professionals and their clients. While health practitioners are adept at giving information, many overlook psychosocial issues and the impact of the illness on the person [
6]. When offered by a peer, sympathetic understanding may serve to decrease feelings of isolation, as well as the social distance between the client and the service provider. Such factors may have been particularly important for the participants in the current study, as the sense of isolation and stigma is known to be especially strong in the period of time immediately after diagnosis [
52].
Secondly, by demonstrating their own competence in the management of their illness, the Informed Supporters were able to provide participants with direct evidence of the benefits of persisting with treatment regimes, thereby motivating participants to persist with their own treatment. Similar effects to those observed in the current research have been found in a study of individuals with schizophrenia, who showed an increased trust in psychiatric treatment following participation in a peer-supported psychoeducation program [
59]. This suggests that one of the key advantages of using peer supporters throughout individual interventions, and in particular treatment programmes for bipolar disorder, is that they help individuals maintain trust in mental health services at crucial times where unsupported individuals may begin to disengage.
A final mechanism by which peer support exerts its benefits is via the positive effects it has on those providing the support – the helper therapy principle [
60]. Peers involved in providing mental health services experience a number of benefits from helping, including increased confidence in their own capabilities, enhanced sense of control over their own illness, and increased empowerment and hope [
2]. Helping others with a similar condition has also been found to improve quality of life in peer supporters [
61,
62]. Qualitative data from the present study suggests that the Informed Supporters gained a number of benefits from helping the participants throughout the psychoeducation program, including a greater sense of competence, a greater awareness of the factors that influenced their own bipolar disorder, improved knowledge of the strategies used to manage the disorder, as well as a sense of belonging to a wider community who were actively attempting to improve existing treatments. These findings indicate that even with a clinical condition that is associated with interpersonal difficulties, benefits associated with experiential knowledge, social support, social comparison and helper therapy can be found.
Limitations
There are some limitations that must be kept in mind when interpreting the current data. First, whilst the use of a purposive sample of recently-diagnosed individuals allowed peer support mechanisms pertinent to this population to be explored through naturally-occurring email conversations, the sample may also have been very computer-literate and all had access to the internet. However, it has also been argued that the increasing internet access and usage by the general population may decrease this limitation [
63]. Secondly, the study protocol restricting Informed Supporters to two emails per week may have limited the exploration of issues and thus the richness of the data collected. Lastly, due to resource restrictions, interviews were only conducted with the Informed Supporters and not with the RCT participants. Thus information as to why some participants did not engage fully with their Informed Supporter is lacking. It is therefore possible that the issues noted as possible threats to the effectiveness of peer support in bipolar disorder may have contributed to the underuse of the peer support service in a proportion of patients. Given that effective peer support is reliant on the patient engaging with their peer, it is important that future studies of supported interventions include an examination of factors that may contribute to poor engagement with peer supporters.
Competing interests
The authors declare that they have no competing interests.
Authors’ contributions
JP, GP, VM and MS designed the RCT and the qualitative study, and GP, VM and MS wrote and developed the Online Psychoeducation Program for Bipolar Disorder. Informed Supporters were trained and supervised by JP and VM. AJ performed the face-to-face interviews with the Informed Supporters. AW and JP performed the qualitative analysis on the email exchange and Informed Supporter transcripts. AW and AJ drafted and edited the final manuscript under the supervision of JP, and received clinical advice and assistance with proofreading from JN. All authors reviewed and approved the final manuscript.