Shared perspectives of consumers, carers, and mental health professionals
There were themes that all three groups endorsed and are described below.
Consumer peer workers provide shared experiences to consumers that bring hope and connection
Consumer peer workers conveying hope to consumers, including demonstration that recovery is achievable, was strongly recognized by consumers, carers, and mental health professionals. “It really does feel like you’re never going to get better when you are unwell, and unfortunately, I think a lot of clinicians still hold quite a stigma regarding BPD that um, clients with that diagnosis won’t recover and won’t lead meaningful lives, so I think it’s, um, really helpful to have someone with that lived experience in that role and doing quite well, um for the clients to be able to see that recovery is actually quite possible, um and you can lead a meaningful life” (Consumer Peer Worker 1).
A peer support relationship was often described as casual, including the use of everyday conversations and informal language, which allows consumers to feel comfortable. “They (consumers) understand what you mean when you say, ‘I waited 12 hours.’ They’ve waited 12 hours. So, there’s a way, it’s kind of like a short-hand, I guess, and language you speak to someone with a lived experience, which means that you don’t have to be so descriptive” (Consumer Peer Worker 3). In contrast to limited disclosure from mental health professionals, consumer peer workers are open in sharing their thoughts and experiences, which can help other consumers open up through quick connection and trust. “I (consumer peer worker) was telling her (consumer) about when I get stress sometimes I get this thing where I’ve got to repeat these phrases over and over in my head [laughs]. And then she started to let me know about something she’d been saying since 2009 in her head” (Consumer Peer Worker 4). Reciprocal relationships with consumer peer workers were compared to existing power imbalances with mental health professionals. “There’s a reciprocal respect that comes from that (peer support) where there’s not a power differential that I think is often existing in the clinical relationship” (Mental Health Professional 4). Several participants differentiated consumer peer workers from mental health professionals with a lived experience of mental health problems because professionals don’t explicitly “use that (their lived experience) as their tool of engagement” (Mental Health Professional 4).
Consumer peer workers understand and validate consumer experiences
The majority of consumers, carers, and mental health professionals described consumer peer workers understanding and validating consumer experiences. Mutual understanding can provide consumers with validation and comfort, which may differ to experiences with mental health professionals. “I guess there is a difference between a psychologist being able to say, ‘uh, that must be really difficult for you’ and someone else (a consumer peer worker) being able to say ‘I, I remember how difficult that was’” (Consumer 6). Many consumers described stigmatizing responses they had received from other people, services, and mental health professionals. Consumers, carers, and mental health professionals reported that consumer peer workers can validate the unique experiences of BPD which are often not understood by others, helping consumers feel less judged and isolated. “They (consumers) don’t feel alone, they don’t feel weird or different. Last week one of the girls said she doesn’t feel like she’s got two heads. She feels like she’s a normal kind of person and that she’s not being judged” (Consumer Peer Worker 5).
Consumer peer workers provide support to consumers as they transition from acute to community care
Consumers, carers, and mental health professionals described how consumer peer workers provide input and support as a consumer moves from acute crisis, inpatient stays, to community care. Many participants described how consumer peer workers advocate for consumers when treatment decisions are being made. “Within like hospital settings and that sort of thing um, clients feel like they’re not being heard by clinicians, um so it might be, um, being pushed for discharge before they are ready, or it might be being pushed into a type of therapy that they don’t want to do... so having a peer recovery worker who understands that experience and is able to advocate for the rights of the client is really important” (Consumer Peer Worker 1).
In addition, consumer peer workers can provide emotional support to consumers during a crisis, inpatient stay, or hospital discharge. “If they (consumers) come onto the ward they’d actually ask for me … and I’ll just sit down and just listen to see where they’re at” (Consumer Peer Worker 2). Many participants suggested that consumer peer workers can spend time with consumers in the community, including meeting at cafes or attending appointments, which allows consumers to feel empowered and develop interpersonal skills. However, one consumer peer worker believed consumer peer workers should not engage in community activities because it is “not unique to their lived experience” (Consumer Peer Worker 4).
Many participants suggested that consumer peer workers share and role model their personal use of skills and strategies which may be relatable and hold more authority, compared to skills shared by mental health professionals. “They (consumers) respond differently, as to, like one of the other clinicians, teaches them about a skill as to when I bring up my lived experience and say when I felt like that I, I found this really useful... you can tell that it’s quite meaningful for them to have that experience” (Consumer Peer Worker 1). According to many participants, consumer peer workers can connect consumers to resources, help them navigate the mental health system, and provide education about BPD. Most participants described how consumer peer workers can facilitate Dialectical Behavior Therapy (DBT) or support groups. About half of the participants suggested that consumer peer workers can help consumers with homework and skills taught in therapy. “If they’re (the consumer) doing DBT, and they’ve got exercises to do, and they don’t know how to do them, and that (consumer) peer worker has done DBT, and understands it, yeah, to have somebody maybe help you through your exercises” (Carer Peer Worker 3).
All groups agreed that it is important to allow consumer choice in selecting a peer worker in which to work
Consumers, carers, and mental health professionals suggested providing choice to consumers regarding their consumer peer worker. All participants identified the importance of a suitable match between a consumer and consumer peer worker. “It would be lovely if you could say to a consumer, ‘Would you like to work with a peer support worker, what gender, what age?’ I mean, because you know, it’s I suppose trying to match it as much as possible” (Mental Health Professional 8).
The majority of consumers and carers described how a consumer peer worker with a diagnosis of BPD was beneficial. “I, personally, would prefer someone (a consumer peer worker) with BPD. Um [pause], not another diagnosis … a lot of my own experience with BPD could only really be understood by somebody else with BPD” (Consumer 5). Other participants described how a consumer peer worker should have similar experiences as consumers and an understanding of BPD, but not necessarily a BPD diagnosis. “If you’ve experienced extreme distress, you’ve experienced mistreatment in the public mental health system … those things are still quite important for the client to know that you’ve experienced but it doesn’t necessarily need to come with a diagnosis of BPD” (Consumer Peer Worker 1). A consumer peer worker’s identified gender, age, recovery stage, culture, linguistic background, sexual orientation, and personality were important considerations for some participants. For example, consumers might feel more comfortable with a same gendered consumer peer worker. Many participants described offering choice to consumers regarding their preference of individual or group support, whether to access peer support, and how often support is provided. Several participants described how consumers may feel more comfortable engaging with consumer peer workers compared to other services or treatments.
All groups agreed that it is important to consider offering support for consumers from both mental health professionals and consumer peer workers
The majority of consumers, carers, and mental health professionals described the importance of consumers receiving support from consumer peer workers and mental health professionals, due to their unique contributions. Having both types of support available to consumers can maximize benefits for consumers. “If the debate becomes peer work versus something else, we’ve actually lost the consumer in that conversation. So, I think peer support has a really important role in all types of mental health support and treatment but so, too, has good clinical care as well” (Mental Health Professional 2). Therefore, increasing the amount of consumer peer workers and accessibility of peer support services was recommended.
Areas of disagreement
There were some areas that consumers, carers, and mental health professionals held different views about various roles and functions of the consumer peer worker and carer peer worker. For example, there were differences in opinion about how integrated the consumer peer worker should be in a clinical mental health team.
Some consumers advocated for consumer peer workers being considered a part of the mental health team, including writing notes and accessing medical records, as this was seen as helping to validate and integrate them as part of the team. Many consumers described how information in medical records helps consumer peer workers understand them, which can help them feel cared for. “I can speak to someone who has an understanding of what it is like and can also see sort of my past up to this point. That’s going to probably immediately make me feel more comfortable and like also like they care more and have put in the time” (Consumer 6). Consumer peer workers and mental health professionals can exchange information about consumers by writing their observations in medical records and through verbal communication. Shared information between consumer peer workers and mental health professionals can keep consumer peer workers and consumers safe by increasing awareness of risk concerns, allowing continuity of care, and improving interactions with consumers. “It is important to have (consumer) peer workers writing clinical notes and being able to view clinical files so it helps them work with clients in the best possible way, and it makes the (consumer) peer worker’s … opinions and their engagement with clients known to other clinicians in the team” (Consumer Peer Worker 1). Some consumers discussed the importance of providing note writing training and ensuring time spent note writing does not take away from spending time with consumers. Several consumers believed that consumer peer workers writing notes or accessing medical records would not negatively influence the relationship with consumers. Trust can be fostered with consumers if the note writing process is made transparent, and the content of the notes is collaboratively chosen between consumers and consumer peer workers. “It’s down to the person who is being supported … what information do they want disclosed? And – and they may not even want that to happen” (Consumer Peer Worker 6).
In contrast, some consumers considered that it is important to separate the consumer peer worker role from mental health workers, and thus were not willing for consumer peer workers to access medical reports or write notes into hospital files. For example, two consumer peer workers described how consumer peer workers should remain separate from the mental health team and not write notes or access consumer medical records. They reported how the consumer peer worker role is different from the role of mental health professionals, and requiring them to do the same tasks takes away from the unique reciprocal role and expertise of the consumer peer worker. In addition, medical records may not accurately represent consumers, and consumers may be less open with consumer peer workers who have read their medical record. “[Consumers are] less likely to engage with you (consumer peer worker). Um if – if you’re doing that, if – if you’re reading notes, writing notes. So they’re not going to be open with you” (Consumer Peer Worker 2). Both consumer peer workers emphasized how all information a consumer peer worker learns about a consumer should come through conversations with the consumer. “Often what’s actually written in those records really doesn’t match what it is the person’s saying. And that relationship is the most important aspect of peer work, therefore, you know, as a (consumer) peer worker I would want the person to be telling me their story themselves” (Consumer Peer Worker 7).
Many carers described the value of integrating consumer peer workers into the mental health team, although some were cautious of doing so. Carers suggested that when consumer peer workers view medical records it can help them understand consumers and aid with continuity of care. “If the (consumer) peer worker had some access to notes to know what had gone before. You know, what sort of things might upset them (the consumer), what sort of things they enjoyed; all that sort of stuff” (Carer Peer Worker 4). By reading medical records, consumer peer workers can learn about risk concerns, potential triggers for consumers, and whether consumers are engaged with other services. Several carers identified the importance of training consumer peer workers and carer peer workers in note writing, confidentiality, and duty of care issues. Some carers expressed the importance of consumers consenting to consumer peer worker’s writing notes, and communicating with consumers about what information will be included in the notes. Several carers believed that consumer peer workers accessing medical records would benefit their relationships with consumers because consumer peer workers are non-judgmental and have built trust with consumers. Carers acknowledged that information that is accessed from medical records should be complemented by listening to the experiences of the consumers. “I think it’s important that they (consumer peer workers) know a lot about the person that they are supporting. But I think a lot of that should come from the person as well” (Carer Peer Worker 1). In contrast, some carers were wary about consumer peer workers reading consumer medical records due to the negative consequences for the peer support relationship. “It becomes like a session. It definitely changes the whole dynamic” (Carer 2).
In addition, some mental health professionals identified the value of having consumer peer workers being included as part of the team, whereas others saw value in there being a separation of role and function. Mental health professionals described how verbal communication and note sharing between consumer peer workers and mental health professionals can help professionals understand and support consumers. “There’s actually no real reason why they (consumer peer workers) shouldn’t be contributing to the notes … What it did is create more information that the whole team had to support a person, as opposed to a sort of two-tier system where the peers worked over here, and the clinicians worked over there” (Mental Health Professional 2). Communicating with consumers about note writing and the consumer peer worker’s involvement in the mental health team was recommended by several professionals. The ability to access the notes of consumer peer workers can also help professionals understand the consumer peer worker role and what they are doing with consumers, and vice versa. “If they (consumer peer workers) don’t know what the rest of the team they’re working with is doing, and if the rest of the team can’t know what they’re doing, all we’ve created is risk and confusion” (Mental Health Professional 11). Clarifying the responsibilities of consumer peer workers and mental health professionals regarding documentation of consumer risk issues was suggested to protect consumers, consumer peer workers, and professionals. Many professionals described how including consumer peer workers in the mental health team, including the ability to access medical records and write notes, helps professionals acknowledge the value of consumer peer workers. “We need to view peers as colleagues and as, um – you know, as I said, privilege their expertise and their knowledge as much as we privilege our own and so I think if we’re working alongside peers they should be entitled to, and able to, complete clinical tasks such as writing notes and, you know, viewing medical records” (Mental Health Professional 7). However, some professionals were hesitant about involving consumer peer workers in the mental health team, and acknowledged how a consumer peer worker’s access to medical records could negatively impact the peer worker’s relationship with consumers. “[Reading clinical notes] would become a barrier to you (the consumer peer worker) actually sitting with a client and go, okay, what’s important to you today … and I think it might distract from being really, kind of, here and now” (Mental Health Professional 9). Some professionals identified risk around consumer peer workers becoming unwell, such as being triggered by reading notes, and not maintaining appropriate boundaries or confidentiality. “The risk is of course, that if people (consumer peer workers) become unwell that they may have issues around their own boundaries and maintaining confidentiality” (Mental Health Professional 10).
Consumers, carers, and professionals also had different perspectives regarding whether carer peer workers should provide support to consumers, and consumer peer workers should provide support to carers. Several carers believed that support from carer peer workers would benefit consumers, whereas other participants expressed that consumers would be better supported by consumer peer workers. “I think consumers often relate better to consumer peer workers than they do to carer peer workers” (Mental Health Professional 2). Most participants thought that consumer peer workers could support carers, although some consumers believed that consumer peer workers should predominately support consumers. Two consumer peer workers suggested having distinct roles for consumer peer workers and carer peer workers to avoid role confusion. “Do you use a, um, (consumer) peer support worker or a carer peer support worker, and that’s really a blur because what we do here is I don’t deal with anybody’s carers … I guess my thought is it’s going to be hard for people to work across more than one space” (Consumer Peer Worker 4).
There were several themes that were constructed based on the unique perspectives of consumers, carers, and mental health professionals that are described in the next section.
Consumers identified the importance of consumer peer workers maintaining well-being and being valued and supervised in their workplace
Consumers described how consumer peer workers can often balance organizational policy or the opinions of mental health professionals and the best interest of the consumer, which can leave them with little power. “If you’ve got, yeah, the (consumer) peer worker on the side of the consumer but you’ve got the rest of the team on another, you know, the (consumer) peer worker’s going to become unwell and it’s not, not a good model” (Consumer Peer Worker 4). Several consumers reported that consumer peer workers are often poorly treated and stigmatized by organizations, mental health professionals, and peer workers with other diagnoses. “The amount of bullying and stigmatizing that goes on within the peer support workers, it’s horrible” (Consumer Peer Worker 3).
Consumers described the importance of consumer peer workers maintaining their own well-being and being valued by mental health professionals and organizations. Self-care can be strengthened by setting personal boundaries regarding what information they disclose to consumers and appropriately managing time spent with consumers. Some consumer peer workers described how interacting with consumers in itself was helpful to them. “To give back is just, um, is so satisfying” (Consumer Peer Worker 6). Consumers described the importance of supervision being provided to consumer peer workers by mental health professionals to help them maintain self-care. Several consumers suggested hiring consumer peer workers who are far enough in their recovery, including the ability to set appropriate boundaries and articulate a story of recovery. “At some point I think people (consumers) feel that they’re ready to become a (consumer) peer worker but the story they tell is very much an illness story, and so, ‘This is – this is what’s happened to me, this is my experience,’ rather than, you know, ‘These are the things that I did to recover, these were the things that have helped me to recover’” (Consumer Peer Worker 7). Allowing choices within the consumer peer worker role and increasing compensation and work opportunities for consumer peer workers were also recommended.
Carers emphasized how carer peer workers have an important role in providing emotional and informational support to carers
All carers described how peer support could be provided to carers by carer peer workers. Peer support provided by carer peer workers to carers can help carers support consumers. “If you can support the carer, they’re going to be a lot better at supporting the consumer” (Carer Peer Worker 4). Carer peer workers can offer hope to carers by sharing how they have made it through difficult times. “I’ve had people in our support group that are loved ones that say, well, we were told by, you know, the psychologist or the psychiatrist that, you know, our loved one would never get well, they’d never have a job. They’d always be like this, it would always be difficult. And that’s what they believed. Until all of a sudden, they meet someone who’s not only saying there’s hope and there’s ways to get well, they’re saying there’s hope, there’s ways to get well and we know this as fact” (Carer Peer Worker 2). Carers described being validated and comforted by carer peer workers who can understand their unique experiences, unlike other people who may judge them for the way they interact with the consumer they support. “A (carer) peer (worker) would understand why you’re nervously responding to your phone all the time and midway through a conversation, you’d be texting, and trying to have a cup of coffee with a friend, but, yeah, a peer wouldn’t judge you for that” (Carer Peer Worker 3). One carer described how she would prefer support from a carer peer worker who supported someone with BPD rather than another mental health problem, due to the shared understanding.
Many carers described how carer peer workers can advocate for their needs, and provide information about BPD, resources, and the mental health system. “With the resources and information that I’ve collected over the years, I’ve been able to pass that on and offer support, um, to encourage them (carers) to attend workshops and basically get any information that they can about BPD, so that they are prepared, um, and that they know how to handle – often handle situations and behaviours, um, that the person they care for presents with” (Carer Peer Worker 5). Carer peer workers can provide suggestions to carers about effective ways to communicate with the person they support, and provide practical advice. Group meetings may be particularly important for carers to allow them to hear multiple perspectives of how to potentially handle a situation. In addition, group meetings for carers could be tailored to the needs of siblings, children, and partners. Carer peer workers helping carers practice self-care and providing emotional support to carers, including allowing them to share and listening to them, was important for many carers. “It takes a big load off, um, a lot of carers shoulders because it’s just more being able to vent, um without being judged” (Carer Peer Worker 4). Several carers recommended improving the accessibility of peer support for carers, including having carer peer workers that can be contacted during a crisis. One carer peer worker recommended that carers receive support from carer peer workers who have more years of experience being a carer. “Having these experienced carers – um, when I say, experienced, it’s more, they are in a good place and they’ve been in a carer role for quite some time … they can come in and – and help share the good – the good stories as well” (Carer Peer Worker 1).
Carers identified the value of hearing and learning from the experiences of consumer peer workers
The majority of carers described how they could be supported by consumer peer workers. Consumer peer workers can tell carers how they felt when they were in the consumer’s situation or share what consumers are learning in therapy to help carers understand what consumers are experiencing and how they can best support them. “Being involved with other consumers who have BPD as they have shared what’s helped them, how they’ve coped, what’s been detrimental and hasn’t helped has given me a lot of insight and awareness. So I’ve been far more informed in the way I handle things with my daughter” (Carer Peer Worker 6).
Carers identified the value of having access to respite, and the possible role of consumer peer workers in providing that support
Carers can receive respite when consumer peer workers spend time with consumers in the community, including helping consumers with education and employment goals. “Most carers of the – would just like to find something that would make their children less isolated, and also give the carer a – a – a break. A bit of respite for a carer, really, if they go off with the peer support worker, even if it’s for an hour. Um, that gives the carer that hour off” (Carer Peer Worker 4). However, several carers described negative experiences of the person they support being influenced by a consumer with BPD who was not in recovery, and recommended that consumer peer workers are further along in recovery compared to the consumers they support.
Mental health professionals identified how consumer peer workers and carer peer workers inform and improve mental health care
According to mental health professionals, consumer peer workers and carer peer workers can help change services to become more recovery oriented. Several professionals described how consumer peer workers helped them interact with consumers more effectively and compassionately. “When you have peer support workers, for any diagnosis, but particularly for, for personality disorders, you get less incidents of one to one, especially in seclusion, and over medication and all the usual punitive things mental health services tend to do to what they perceive as difficult people” (Mental Health Professional 2). Interacting with consumer peer workers and carer peer workers can help mental health professionals be mindful of the language they use, and be educative about alternative appropriate language. “I think there can be sort of peer consultation for professionals, you know, which would, I think, also help us manage our language and the way that we speak about people, um, because sometimes I think we can – professionals can use short cuts and can inadvertently use language that is unhelpful or, um, inadvertently blaming of people... they (consumer peer workers and carer peer workers) might help us, um, understand the impact of language” (Mental Health Professional 7). In addition, the ways that consumer peer workers write notes may be more recovery oriented and inform the note writing of mental health professionals. Further, including consumer peer workers in interventions delivered by professionals can help professionals support consumers. “I mean it would be great if they (consumer peer workers) could share their story as part of the, sort of, therapeutic intervention that we have” (Mental Health Professional 10).
Mental health professionals described the value of consumer peer workers and looked for opportunities to strengthen their contribution
Mental health professionals acknowledged how consumer peer workers have been mistreated and undervalued by services and mental health professionals, including hesitation by some workplaces to hire consumers with BPD. “There’s probably stigma from employers about the idea of hiring people who, um, whose lived experience is of BPD” (Mental Health Professional 4). Professionals described how clarifying the consumer peer worker’s purpose in an organization can help them understand and value the consumer peer worker role. Several professionals were concerned about the boundaries between consumer peer workers and consumers, such as the relationship being too casual, particularly because consumers with BPD may have difficulties understanding appropriate boundaries. Consumer peer workers setting boundaries around mobile phone contact and community contact with consumers was suggested to help prevent potential risk issues. “We kind of established with the voluntary peer support worker that, you know, the contact is just to be had, you know, at the nominated times in the building here or the park nearby so that it, I suppose as much as a kind of protective mechanism for her, um, as also for my consumer” (Mental Health Professional 8). Mental health professionals described the importance of professionals providing valuable information to consumer peer workers through supervision and training. “The clinician can provide some, some support to the (consumer) peer worker about, you know, um, yeah, anything that the clinician has knowledge about that the (consumer) peer worker might not” (Mental Health Professional 5).