Peer-Facilitated Decision-Making in Mental Health: Promises, Pitfalls, and Recommendations for Research and Practice

Abstract

There is growing recognition that peer support workers serve an important role in facilitating decision-making about treatment and recovery among people with mental health conditions. The purposes of this article were to provide examples of peer-facilitated decision support interventions in the published literature, and, based on these examples and related research, discuss some promises and potential pitfalls associated with peers serving in decision support roles, and provide recommendations for research and practice. Examples were identified within the literature on decision support interventions for people with serious mental illnesses. Promises, pitfalls, and recommendations were informed by this research and by the literature on lived experience perspectives, the helper-therapy principle, and reported barriers and facilitators to peers assisting with decision-making. According to the included studies, peers may facilitate decision-making in several ways (e.g., asking service users about their goals/preferences, assisting them with using decision support tools, sharing their stories, facilitating access to information and resources). Peer-facilitated decision support may be associated with positive decision-making and health outcomes for both service users and peer support workers. However, careful consideration of implementation barriers, such as inadequate resourcing, poor integration, and peer support values being compromised, is needed.

Peer support is considered a hallmark of recovery-oriented mental healthcare. While several definitions and typologies have been proposed (1-3), here we define peer support as the services and supports provided by an individual with lived experience of mental health challenges and recovery working within a mainstream mental health setting. In this context, peer support workers are specifically trained to use their lived experience in order to serve in a multitude of roles, often striving to promote self-determination, health and wellness, hope, effective communication with treatment providers, illness management, and stigma reduction (4). While peer support workers may function across a number of different areas (e.g., training and education, group facilitation, care coordination, individual/systems advocacy, policy development and research (5)), the focus of this paper is on peer support workers who volunteer/are employed to provide direct support to other people with lived experience.

Individuals with mental health challenges often experience uncertainty related to decisions about their treatment and recovery (6) . Peer support workers are ideally suited to assist individuals with decision-making. Not only are the perspectives and support of people with lived experience desired when engaging in treatment decisions and self-advocacy (7, 8), but theories underlying peer-delivered services (9-11) suggest unique ways in which peer support workers may facilitate the decision-making process. For example, they may share their experiential knowledge (12), derived through lived experiences, to complement factual information provided by other treatment providers during the decision-making process (9). Peer support workers foster self-determination through their encouragement and modeling of self-responsibility and advocacy (4, 13), which may promote the sustainability of decisions (14). They may also be an important source of emotional support (9), helping service users to feel less alone and building self-efficacy needed for decision-making (15, 16). These unique contributions add to what other treatment providers do to support people with decision-making, including providing them with options, answering questions, asking about personal preferences, and helping them carry out decisions.

While theory indicates that peer support workers can serve an important function in facilitating decision-making, there is currently little guidance as to how they may do so or what could be done to circumvent known challenges in this area (17). A growing number of shared decision making and decision support interventions in mental health provides opportunity to analyze the contributions of peer support workers as well as factors affecting implementation. These interventions typically involve decision coaching, guidance, and motivational or self-management approaches, with or without the use of decision aids (18-20). Regardless of format, their purpose is to help individuals make informed healthcare choices that are consistent with their personal values and preferences. Peer-facilitated decision support involves the delivery of these interventions in whole or in part by peer support workers. For example, peers may provide coaching or motivational support to help individuals make or follow through with their decisions, or they may assist them with using decision aids or other decision support tools. An examination of these interventions is needed to support implementation of peer decision support, especially given that the peer support workforce is rapidly expanding (21), and decision support is an ideal area for peers to be working.

The purposes of this article are to provide examples of peer-facilitated decision support interventions in the published literature, and, based on these examples and related literature, discuss some promises and potential pitfalls associated with peers serving in decision support roles, and provide recommendations for research and practice. This article focuses on studies that have been conducted with individuals with serious mental health conditions, as this population faces significant barriers to involvement in decision-making about their care (22) and may especially benefit from peer-facilitated decision support.

Examples of Peer-Facilitated Decision Support Interventions

Examples of peer-delivered decision support interventions were identified within the literature on shared decision making and decision support for people with serious mental illnesses. It should be recognized that we did not perform an exhaustive review of peer-facilitated decision support interventions for this population, as this was beyond the scope of this article. The included interventions, discussed below, are not necessarily the only ones that exist but provide examples for how peer support workers may play a formalized role in supporting decision-making.

The most well-established and extensively researched of these interventions is Deegan’s CommonGround (23-30), which combines digital technology and peer support to help individuals prepare for psychiatric medication consultations. Peer support workers are primarily responsible for assisting individuals with using a computer-based software program that provides education about recovery and elicits individuals’ perspectives about their mental health and questions and concerns about their medication. Educational materials within the software program also contains video vignettes from peers about their recovery experiences. Finally, peer support workers are available to individuals after their medication consultations to provide any additional supports requested during the meeting (e.g., assistance with using wellness tools) (23).

Inspired by this process, Simmons and colleagues’ (31) CHOICE project evaluated the impact of an online decision support tool and engagement with a peer support worker during the intake process at a youth mental health service. Peer support workers (young people with lived experience of mental health challenges) greeted participants in the waiting area prior to their first appointment and assisted them with using the decision support tool. The tool gathered information about participants’ preferences for treatment and provided education about treatment options available at the service. It included prompts for young people to discuss the potential benefits and risks associated with each option with their intake clinician. Peer support workers were also available after participants’ appointments to provide further support.

Metz and colleagues (32) developed an intervention, SDM-Digital Intake (SDM-DI), to foster shared decision making during the intake process within outpatient clinics specializing in depression, anxiety, and personality disorders. The intervention was comprised of digital eHealth modules designed to gather information about treatment needs and preferences, Routine Outcome Monitoring (ROM) of clinical outcomes, and interaction with peer support workers for assistance with completing eHealth modules and preparing for the intake session.

A chronic mental illness self-management and collaborative care planning intervention, developed by Lawn and colleagues (33), involved a comprehensive assessment of strengths and barriers to self-management, a clinician and service user developed care plan based on this assessment, and partnership between peer educators and case managers in the delivery of a self-management skills group. Peers were also available to provide education and motivational support to individuals as they worked with their clinicians during the care planning process.

Paudel et al.’s (34) Brien Shared Decision Making Model also consisted of a group intervention that encouraged participants to set recovery goals and educated them about psychiatric medications, and included support from a peer support worker and assistance from a nurse with accessing information about medications. The aim of the intervention was to prepare individuals to engage in shared decision making about medication with their psychiatrist. The peer support worker asked participants about their preferences related to medication and shared their personal experiences with decision-making about medication and negotiating and communicating with treatment providers.

Munson and colleagues (35) tested an intervention, Just Do You, that aimed to improve treatment engagement among young adults with serious mental illnesses. This two-session intervention targeted key variables relevant to decision-making (e.g., beliefs about the advantages and disadvantages of engaging in treatment) through expressive art activities, personal narratives, psychoeducation, and motivational interviewing. It was co-facilitated by clinicians and peer support workers. Peer support workers shared their lived experience, encouraged self-acceptance and trust of providers, and promoted a belief in the ability to communicate with providers about treatment decisions. They also provided mentoring and check-ins, answered questions, and built relationships with participants between intervention meetings.

Taken together, these studies demonstrate that peer support workers may facilitate decision-making by asking service users about their goals and preferences, assisting them with using decision support tools, sharing their stories related to decision-making and self-advocacy, enhancing motivation, facilitating access to information and resources, supporting effective communication with treatment providers, and providing follow-up supports.

Some Promises Associated with Peer-Facilitated Decision Support

While research designs of the aforementioned studies preclude the ability to isolate the effects of peer support within these multi-faceted interventions, results demonstrate promising decision-making and health outcomes. As indicated by a recent systematic review of shared decision making interventions for individuals with serious mental illnesses (36), these outcomes include enhanced patient-centered communication (24), increased treatment engagement and healthcare service use (26, 35), improved symptoms and recovery attitudes (30, 32), greater perceived shared decision making (31, 32), reduced decisional conflict (31, 34), and increased self-management and functional outcomes (33). These findings imply that decision support interventions that are delivered in full or in part by peer support workers may confer a number of benefits to those receiving support, at least among people experiencing serious mental illnesses from high income countries (where these studies took place).

Beyond the findings of the studies described above, literature on the power of lived experience perspectives suggests additional benefits associated with peers serving in decision support roles. For example, the voices of those with lived experience, including peer support workers, can inform systems transformation in order to better support service users’ dignity, self-determination, and empowerment (37). As part of the decision support process, peer support workers can use their personal experience of decision-making as well as their observations about supporting others in these efforts to identify and help remediate barriers associated with the mental health system, such as concerns about the ability of service users to participate in decision-making. This might entail sharing their success stories and advocating for others to have ample opportunity to make their own treatment choices. Further, the sharing of lived experience may help peer support workers achieve a level of credibility and connection with service users that is qualitatively different from that attained by mental health service providers without such lived experience (38). As peer support workers share their stories about their healthcare and recovery choices and experiences with service providers, they are likely to simultaneously build trusting relationships needed to support service users with their own decision-making and recovery.

The opportunity to deliver decision support may also positively impact peer support workers themselves. According to Salzer and Shear (39), the helper-therapy principle indicates that peer support workers may benefit in several ways from serving as helpers, including experiencing greater perceived interpersonal competence, equality in the peer-to-peer relationship, gains in personal knowledge, and social approval. In a qualitative study of how peer support workers benefit from serving in their roles, these researchers found support for all of the benefits identified by the helper-therapy principle as well as gains in personal recovery, professional growth, and other job-related benefits (39). In the case of peer-facilitated decision support, peer support workers may gain a sense of accomplishment from helping others make choices about their healthcare and recovery and empowering them to advocate for their preferences, grow in their own knowledge and skills related to decision-making, and feel fulfilled from developing mutually beneficial relationships with service users. Further, as proposed by Fiddian-Green and colleagues (40), sharing personal stories related to decision-making may help peer support workers make sense of their own experiences, promote a sense of mastery and self-efficacy, and aid in the formulation of goals and plans for decision-making in the future. Finally, hiring and training peers to deliver decision support interventions could lead to increased role clarity for peer support workers employed in mainstream mental health settings, where role confusion within this workforce has been a prevalent issue (41).

Some Potential Pitfalls Related to Peer-Facilitated Decision Support

Although there are many possible benefits to peer support workers serving in decision support roles, so too exist a number of potential challenges. Across the aforementioned studies of peer-facilitated decision support interventions, implementation barriers were largely related to resourcing issues, team integration, professional stigma towards peer support workers, and poor uptake of peer support services (27, 32, 33, 42). While these issues do not appear to be specific to peer-facilitated decision support and have been reported in other studies more broadly focused on peer support (43-45), they are indicative of potential obstacles to the implementation of these services.

Other research has identified challenges more closely related to the provision of decision support by peers. In a qualitative study of barriers and facilitators to supporting service users’ participation in shared decision making, peer support workers reported experiencing conflict between their roles as advocates and expectations of management and felt challenged by power dynamics that placed decision-making authority in the hands of clinicians (17). Extrapolating based on these findings, peer support workers may be expected to persuade those they support to make specific choices (especially those that align with clinicians’ preferences), which runs counter to foundational principles associated with peer support such as person-centeredness, voluntariness, and respect for alternative worldviews (46). They may also be put in positions of giving treatment advice or providing information beyond their expertise in an effort to convince service users to make decisions that clinicians believe are in their best interests. A complementary qualitative study conducted with mental health nurses highlighted concerns about the potential for the sharing of lived experience to create undue influence and undermine decision-making (47). These concerns are echoed by sentiments within the literature on personal narratives that urge caution when using narratives to support decision-making due to their persuasive power, potentially biasing effects, and ability to spread misinformation (48, 49). These possible pitfalls associated with peer-facilitated decision support require careful attention and have implications for training and supervision, discussed further in the next section.

Recommendations for Research and Practice

As the highlighted studies indicate, peer-facilitated decision support interventions demonstrate promising outcomes, but there is clearly a need for additional research in this area. For instance, studies designed to understand the unique contributions of peer support to decision-making outcomes are necessary. Many of the interventions discussed in this article included components other than peer support – such as decision support tools – that may have impacted decision-making. Further, several interventions were co-facilitated by peer support workers and clinicians. Dismantling studies of multi-element interventions and mixed methods approaches exploring whether and how various aspects of peer support influence decision-making may be especially useful. This research could examine mechanisms of action as well as which peer support core values/principles are most useful in the context of peers facilitating decision-making. Additionally, the impact of peer-facilitated decision support on both service users and peer support workers themselves merits further investigation. Based on the previous literature, service user outcomes of interest might include decisional conflict, perceived shared decision making, treatment engagement, and clinical and functional outcomes, while peer supporter outcomes might focus on professional and personal growth, self-efficacy, and job-related benefits.

It is important to note that the included studies of peer-facilitated decision support interventions were conducted in high income countries, and that findings may not generalize to the global population of individuals with serious mental illnesses. Research is needed on how interventions can be tailored to meet the unique needs of racial, ethnic, and cultural minority populations, or indeed reimagined using culturally appropriate participatory methods if the current approaches simply are not culturally appropriate (50, 51). This might be accomplished through modifications to interventions themselves (e.g., translation of decision support tools), reconceptualizing decision support for different cultural groups (e.g., family decision making), new models of peer support (e.g., having one peer support worker and one community elder providing decision support to an extended family), or greater representation among intervention providers. Because peer work is one role that typically has fewer barriers to entry (at least in terms of required educational and training credentials), it offers a pathway to increase the diversity and relevance of the mental health workforce.

Further integration of the literature on personal narratives with that of peer support would also benefit the field. While there is an established body of research on how narratives impact medical and health-related decision-making (52, 53), comparatively little of this research exists in the mental health field and even less has been conducted in the context of peer support. This is an important and surprising gap given the frequency with which peer support workers share their personal experiences as part of their work with service users (4). As recommended by Mancini (54), application of narrative methods and theory to better understand the nuances of peer practices is needed. We affirm and extend this recommendation by adding that narrative research should be used to inform studies of the influence of peer support on decision-making. This research may also be useful for establishing best practices related to the sharing of lived experience to facilitate the decision-making process.

The potential pitfalls identified here point to several practical implications related to peer-facilitated decision support. First, peer support workers may need additional training in how to strategically share their experiences in a way that aids in decision-making. While broader trainings for peer support workers in storytelling and self-disclosure do exist (55), it is not clear the extent to which these apply to decision-making discussions. As personal narratives can be used for a multitude of purposes (e.g., engage, inform, model, comfort) (56), peer support workers should receive instruction in how to craft their stories based on what they hope to accomplish by sharing them. They should also be made aware of the persuasive power that personal stories have and should be encouraged, as appropriate, to acknowledge experiences that differ from their own.

Second, supervisors and fellow team members may require training in how to support the role of a peer in facilitating decision-making. As suggested by Gates and Akabas (43), improving non-peer staff attitudes toward peers and enhancing peer integration on the treatment team may be accomplished by making clear the peer role and how it contributes to the mission of the agency. As peer roles vary widely across localities, states, and organizations, this training should be tailored to the specific expectations of peers in the local area. Training should also include education about the foundational principles of peer support (46), and how these potentially align or conflict with their expectations for how peers may promote decision-making. Supervisors and team members may also benefit from training and consultation in shared decision making in order to foster greater involvement of service users, and others, in the decision-making process. Professional development opportunities in this area may help to rectify perceived power imbalances between clinicians and those with lived experiences during decision-making discussions.

Conclusions

Based on the cited literature, peer-facilitated decision support is a promising approach in need of further study. We have offered several future directions for research and practice, including better understanding the specific impacts of peer support within multi-element decision-making interventions, investigating how peer-facilitated decision support influences both service user and peer support worker outcomes, and developing training programs for peer support workers, supervisors, and co-workers to support the unique role that peers can play in facilitating the decision-making process. As such, we hope to encourage further development and more widespread implementation of peer-based services in this important area.

Highlights.

• This paper provides examples of peer-facilitated decision support interventions in the published literature, drawing attention to both the possible benefits and potential challenges of peers serving in decision support roles.

• Future research should focus on elucidating how and for whom peer-facilitated decision support is effective.

• Training programs for peer and non-peer workers is needed to facilitate implementation of peer-based services in this important area.