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PEER
SPECIALISTS
IN THE STATE OF MISSOURI: A STUDY OF BOUNDARIES WHEN USING LIVED EXPERIENCE AS A HELPING TOOL
A Dissertation Submitted to the Faculty of the Institute for Clinical Social Work in Partial Fulfillment for the Degree of Doctor in Philosophy
By: AMY FRANKLIN STEVENSChicago, Illinois February 2024
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Copyright @ 2024 by Amy Franklin Stevens
All rights reserved
Abstract
This mixed methods study convened focus groups of Peer Support Specialists to modify an existing survey into one specific to the experience of Peer Support Specialists. The survey developed was designed to examine Peer Support Specialists’ use of lived experience within their work with clients. The variables of training, use of supervision, level of comfort, level of knowledge, and level of experience were analyzed to consider their correlation with the Peer Support Specialist’s decision to use their lived experience as a helping tool. This study provides insight into the Peer Support Specialist’s use of lived experience within our current mental health system.
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For Charles and Margaret Franklin, Keith Stevens, David, Emily, and Molly.
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A person is a person through other persons. None of us comes into the world fully formed. We would not know how to think, or walk, or speak, or behave as human beings unless we learned it from other human beings. We need other human beings in order to be human. I am because other people are.
~Desmond TutuAcknowledgements
I would like to thank the peers who participated in this study for their trust, experiences, and stories. I remain inspired and grateful for the work they do and the stories they elevate. Thank you to my dissertation committee including John Ridings, PhD, Denise Duval-Tsioles, PhD, James Lampe, PhD, and Joan Servatius, PhD. Their insight, encouragement, and patience were invaluable to me throughout this entire process
To my parents, my husband, and my children: Your unwavering grace and faith in me lead me back to my path, time and time again
Table 5. Comparison of
Table 6. Comparison of Supervision Across Scenarios, (N=37).
Table 7. Comparison of Knowledge Across Scenarios, (N=37).
Table 8. Comparison of Discomfort Across Scenarios, (N=37).................................................
Table 10. Scenario 1 Correlations with Decision to Share Lived Experience (LE), (N=37).
Table 11. Scenario 2 Correlations with Decision to Share Lived Experience (LE), (N=37)......
Table 12. Scenario 3 Correlations with Decision to Share Lived Experience (LE), (N=37).
Table 13. Scenario 4 Correlations with
(LE), (N=37)....
Table 14. Scenario 5 Correlations with Decision to Share Lived Experience (LE), (N=37)....
Table 15. Scenario 6 Correlations with Decision to Share Lived Experience (LE), (N=37).... 105
Table 16. Scenario 7 Correlations with Decision to Share Lived Experience (LE), (N=37).... 107
Table 17. Scenario 8 Correlations with Decision to Share Lived Experience (LE), (N=37). 109
Table 18. Scenario 9 Correlations with Decision to Share Lived Experience (LE), (N=37). 110
Table 19. Scenario 10 Correlations with Decision to Share Lived Experience (LE), (N=37).. 111
Table 20. Themes Connection to Survey Question................................................................... 115
Chapter One:
Introduction to the Study
General Statement of Purpose
The purpose of this exploratory sequential mixed method study is to understand peer specialists’ comfort and knowledge regarding their use of lived experience with clients, as well as explore how the use of lived experience impacts professional boundaries within the peer to client frame. This study has two phases. The first and qualitative phase is a focus group of peer specialists. This focus group informed the creation of a questionnaire to understand how comfortable, knowledgeable, and experienced peers are when using their lived experience with clients. The second, and quantitative, phase surveyed peer specialists with the lived experience questionnaire created through the focus group. The surveyed group will be direct-care, peer support specialists employed by mental health organizations in Missouri. At this stage in the research, a peer support specialist will be defined using the federal Substance Abuse and Mental Health Services Administration’s (SAMHSA) definition as, “ … a person who uses his or her lived experience of recovery from mental illness and/or addiction, plus skills learned in formal training, to deliver services in behavioral health settings to promote mind-body recovery and resiliency” (SAMHSA – HRSA, n.d.). While there are several terms used for peer support specialists, they are commonly referred to as peers which will be the term used throughout this study.
Significance of the Study for Clinical Social Work
Peer-provided services are now an established part of the mental health system in this country. The number of peers are rising at a fast rate in the US. In a study conducted in 2019, it was found that a quarter of all United States mental health facilities offer peer services, including
53 facilities in Missouri (University of Michigan Behavioral Health Workforce Research Center, 2019). Government-based funding sources increasingly require that mental health organizations have peer support specialists. For example, in 2016 Missouri was selected to receive a federal grant to pilot a new prospective payment system. In order for Missouri mental health organizations to participate in the grant they were required to demonstrate that they could meet new national standards for community behavioral healthcare. These new standards include the provision of peer support services provided by peer support specialists (Missouri Department of Mental Health, n.d.).
Clinical social workers working in the field of community mental health and/or government-funded mental health services are likely already working with clients who are also receiving the services of a peer. In many cases, clinical social workers and peers will be on collaborative treatment teams in which they are working together to help their mutual clients.
Clinical professionals with a rich understanding of the peers’ work will be at an advantage when collaborating with peers and working with clients who are also engaged with a peer. Adding to the existing knowledge of the peer/client relationship will also equip clinicians to integrate the work of peers into treatment plans and foster therapeutic change with their shared clients.
Peer support services are now recognized as an evidence-based practice by both Medicare and Medicaid and they are increasingly billable to Medicaid across the country (Landers & Zhou, 2014). Consequently, there is a growing call from stakeholders to professionalize these services. Many states have already developed standardized training curriculum and state-level certifications (SAMHSA, 2016). Clinical social workers can be key players in the profession’s commitment to further develop and professionalize peer support services. This will include developing and/or improving comprehensive training for peers and establishing and/or enhancing
Stevens, Dissertation credentialing processes (Chinman et al., 2014). In addition, there is more work to be done on creating models of service, manuals, and fidelity measurements (Barton & Henderson, 2016; Chinman et al., 2014; Davidson et al., 2006). Part of this work is to define clearly, “what peer providers do with their own life experiences for whom, under what circumstances, and to what effects” (Davidson et al., 2006, p. 450). It should be noted that along with this professionalization of peer services there is concern from some peer advocates that standardization could take away the peerness from peer services (Barton & Henderson, 2016; Chinman et al., 2014; Davidson et al., 2006). Clinical social workers can be advocates to work on developing the field of peer services while joining peer advocates to maintain the integrity, or peerness, of peer-to-client dynamics and services. These important roles for social workers cannot be accomplished without a rich understanding of how peer-to-client relationships foster change and how peer services are unique. Clinical social workers will benefit, essentially, from a better understanding of what constitutes peerness and how to foster it. A cornerstone of peerness is the peers’ use of lived experience.
This study's purpose is to gain a more complete understanding of how comfortable, knowledgeable, and experienced peers feel when using their lived experiences. It also considers how the expectation to use lived experience affects the boundaries within the peer to client frame. This information can be used to develop training curriculums that include more nuanced guidance on the use of lived experience. With this data, trainings and social work clinical supervisors can also better assist peers in maintaining their personal recovery while regularly sharing lived experience with clients. In addition, a fuller understanding of the peer boundaries would allow social work clinicians to more effectively lead multi-disciplinary teams that include peers.
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Statement of the Problem
As with other marginalized groups, individuals with mental illness combat stigma, discrimination, and systemic injustices including being left out of discussions and decisions regarding their lives (Davidson et al., 2012). Peers are a product of a movement that advocates for mental health services that are client-directed and policies that are client-reviewed and approved (Davidson et al., 2012). This focus is crystallized by the often repeated slogan ‘Nothing about us without us’ (Trivedi, 2014). Because of this movement, funding sources increasingly require the provision of peer services (Myrick & del Velcchio, 2016). While this is in line with the goals of the movement, a full understanding of peer services is required to avoid the pitfalls of tokenism. More research is needed to utilize peers effectively and to grow peer services thoughtfully.
Peers occupy a unique space in the continuum of mental health providers. Unlike therapists or case managers, they are not just hired based on professional experience or qualifications. Peers are hired based on having lived experience with mental illness. The use of their lived experience with clients is frequently cited as being the key to their ability to reach outcomes equal to mental health professionals and even to exceed these outcomes in the early phases of work with clients (Chinman et al., 2008; Repper & Carter, 2011). As peer support services are entered into voluntarily and knowingly, clients are aware when working with peers that they are working with someone who has experienced mental illness and is in a process of recovery. This knowledge leads to questions of clinical boundaries. Clinical social workers spend significant time in education, training, and consultation considering if and when their personal experiences should be shared with clients and how this affects the professional boundaries that hold the therapeutic frame. In contrast, peers are required to share their own, often emotionally
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charged, lived experiences with their clients; yet peers receive minimal training on boundaries, the personal implications of repeated self disclosure, or on how or when to use lived experience (Kemp & Henderson, 2012). Studies conducted on peer services have identified challenges including boundaries and maintaining the distinct roles of peers, which includes use of lived experience (Davidson et al., 2006).
Current literature seeks primarily to answer the questions of how to define peer support, how peer interventions compare to more traditional interventions, and what is specific or unique to peers. In a study of recent literature, three categories of research on peer support services were identified: feasibility studies, studies comparing peer to non-peer staff, and studies that explore unique qualities possessed by peers (Davidson et al., 2012). These categories are linear beginning with the earliest studies, feasibility studies, and ending with the most current research on qualities of peers.
Feasibility studies.
Feasibility studies aim to show that individuals with mental illnesses could serve effectively as mental health staff. These studies are the earlier studies in the body of literature and were necessary due to existing stigma and discrimination surrounding individuals with mental illness (Davidson et al., 2012). The summation of these studies is that peer services were able to produce outcomes that were at least equal to the outcomes of non-peer provided services (Clarke et al., 2000; Davidson et al., 2004; O’Donnell et al., 1999; Solomon & Draine, 1995). Comparing peer to non-peer staff.
Studies that compare peer to non-peer staff continue to confirm that peers produce outcomes on par with non-peer staff (Barton & Henderson, 2016; Chinman et al., 2001; Chinman et al., 2014; Davidson et al., 2006; Davidson et al., 2012; Sells et al., 2006; Solomon, 2004).
These studies also identify ways in which peers began to distinguish themselves from services provided by non-peers. Peers provided superior outcomes in engaging hard-to-reach clients, reducing hospitalizations, and decreasing substance use (Solomon, 2004). There were also indications that peers were more successful in reducing rates of psychiatric admission rates and lengthening the amount of time individuals remained in the community (Repper & Carter, 2011). Studies also showed that peer services reduce inpatient services, improve relationships with providers, establish better engagement, facilitate higher levels of empowerment, and foster higher levels of hopefulness for recovery (Barton & Henderson, 2016; Chinman et al., 2014; Repper & Carter, 2011). As in the feasibility studies, these outcomes indicated that peers could perform effectively as mental health providers but also indicate that there are differences between the work of a peer and that of a non-peer. One striking difference is that many of the positive outcomes of peer services are shown to be present primarily in the first six months of the working relationship; several studies indicate that after six months non-peer relationships catch up in positive outcomes with the peer ones (Davidson et al., 2006; Sells et al., 2006). Sells et al. (2006) wrote, “This research suggests that during early stages of treatment, peer providers possess distinctive skills in communicating positive regard, understanding, and acceptance to their clients, as well as a facility for increasing participation in needed treatment among the most disengaged” (p. 1183).
Unique qualities possessed by peers.
In her article defining the unique qualities of peers, Solomon (2004) attempts to parse out the critical ingredients of peers and divides these attributes into three categories: service elements, peer characteristics, and system principles. In service elements she discusses peers’ use of an experiential learning process, “Peer providers are particularly adept at negotiating the
Stevens, Dissertation diversity of systems and agencies on behalf of others, due to their own experiences and encounters with societal and system barriers” (Solomon, 2004, p. 397). A second service element is that of mutual benefit; as the client benefits from peer services, the peer also benefits in ways both tangible and intangible. The third element of peer services is the voluntary nature of the service. Her final service element is peer control of services, “Peer provided services need to be peer driven, otherwise peers feel disempowered. If peer service providers feel disempowered their effectiveness is undermined” (Solomon, 2004, p. 398) In the category of peer characteristics, Solomon highlights that peers across programs and states are required to have lived experience with the mental health system, be stable in their own recovery, and not be a current substance user. Finally, in the category of mental health service delivery system, Solomon discusses the importance of diversity in the types of peer-provided services, that peers reflect the cultural diversity of the community, and that peer services are provided both as adjuncts and alternatives to traditional services (Solomon, 2004).
Lived Experience
As current literature begins to more fully consider the relationship dynamics of peers and their clients, the shared history or lived experiences of the peer and the client is cited as a defining characteristic. Davidson et al. (2006) wrote that, “the mutual support literature suggests a list of possible functions that are based on the person’s shared history, including the following: acceptance, understanding, empathy, and a sense of community, thought to lead to increases in hope, autonomy, efficacy, and the assumption of personal responsibility” (p. 450). Barton and Henderson (2016) describe these dynamics as the instillation of hope through positive selfdisclosure. Other functions based on a peer’s lived experience include role modeling and the exposure to alternative worldviews that can “offer cognitive and environmental antidotes to the
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isolation, despair, and demoralization many people experience as a result of their contact with conventional mental health services” (Davidson et al., 2006, p. 450). These functions of role modeling and experiential learning help not only with living with mental illness but also in managing issues common to this population including little or no income, unstable housing, stigma, trauma, and the complexity of the systems individuals with mental illness must navigate to receive needed assistance (Davidson et al., 2012). Barton and Henderson (2016) wrote that, “it is thought that peer support counselors offer visible examples of individuals who are countering stigmas about mental illness by regaining a sense of purpose and agency in their life, and by successfully reintegrating themselves back into their communities” (p. 2). To accomplish these outcomes, peers are expected to divulge their personal and intimate life stories to their colleagues and clients. As Solomon (2004) wrote, “peers were using themselves as an instrument for change” (p. 397).
More research is needed to further explore the claim that the success of peer interventions is partially due to qualities within the peer-client relationship (Sells et al., 2006). While there are positive connections between the relationship dynamics and outcomes, the mechanisms behind these links remain unclear. Conventional instruments used in studies on peer support services are likely not sufficient in capturing the essence of how peer services are unique. Davidson et al. (2006) wrote, “ … we are still just beginning to find ways to identify and assess what the person brings to his or her work that is unique and based on his or her own personal experience of disability and recovery” (p. 449). Researchers are just beginning to explore the way in which peers utilize peer-client relationships based on shared lived experiences to achieve positive outcomes. This study will fit within the overarching theme of research that explores the uniqueness of the peer-client relationship by focusing on the interaction between the use of lived
Stevens, Dissertation experience and professional boundaries. There were no studies found that examine how peers use their lived experience and how this redefines boundaries.
This study will be a benefit to stakeholders as it picks up where current literature stops by examining what peer providers do with their lived experiences within the peer-client relationship. This is in line with next steps identified by current researchers (Barton & Henderson, 2016; Chinman et al., 2014). Understanding how lived experience is utilized allows researchers and readers to consider the most effective uses of lived experience. This study also allows for further exploration of utilizing lived experience within the boundaries of a clinical frame.
Research Questions to be Explored
The primary research questions are:
1. How do peers perceive their use of lived experience within the peer-to-client relationship?
a. How comfortable do peers feel regarding using their lived experience within the peer to client relationship?
b. How knowledgeable do peers feel regarding when and how to use their lived experiences with their clients?
c. How much experience do peers feel they have in using their lived experiences to help clients?
d. Are there certain types of situations that cause peers to feel less knowledgeable or comfortable?
e. What ethical value do peers place on boundary decision-making, or the decision to share or withhold lived experience?
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f. How does training impact comfort, knowledge, and/or experience with peers’ use of lived experience with clients?
g. How does supervision with a qualified mental health professional impact comfort, knowledge, and/or experience with peers’ use of lived experience with clients?
2. Can the Boundaries in Practice (BIP) scale be modified to reflect the domain of peers’ use of lived experience in a way that has both content and construct validity, and reliability?
Theoretical and Operational Definitions
For the purposes of this study, the listed terms will be defined as follows:
1. Peers: Adults who have been hired by a mental health provider based on their lived experience of mental illness and/or addiction and recovery to work with adult clients with mental illness and/or addiction. Peers in this study are certified as Missouri Peer Specialists and are currently working as peers in Missouri To become certified as a Peer Specialist, individuals in Missouri must complete a five-day training and pass a Missouri Credentialing Board exam. The five-day training focuses on identified key competencies which include being, “... able to use their recovery story as it relates to the peer support relationship as well as the needs of the mental health system in the provision of services,” and being, “... able to discern when and how much of their recovery story to share with whom” (Kaufman et al., 2014). Appendix D contains a full list of competencies covered during Missouri’s Peer Support training.
2. Client: An individual seeking professional services from a peer
3. Recovery: “A process of change through which individuals improve their health and wellness, live self-directed lives, and strive to reach their full potential”
(https://www.samhsa.gov/recovery)
4. Lived Experience: A peer’s personal experience of mental illness, the mental health service delivery system, stigma, discrimination, and recovery
5. Boundaries: The delineation between personal and professional roles; in this study the specific boundary domain examined will be the disclosure of lived experience
Statement of Assumptions
1. Peer services are of benefit to and support recovery in the clients they serve.
2. Peers perform a role unlike that of traditional social work or therapy as they are required to share their personal experiences and struggles.
3. Social workers or other clinicians in non-peer roles maintain boundaries that separate their personal and professional lives, including the withholding of personal experiences.
4. Peers create a frame different from the frame in non-peer, professional relationships.
5. Peers would benefit from more robust training on how to use lived experience as well as clinical supervision in this area.
6. Boundaries that allow repeated self disclosure are crucial to positive outcomes in peer support services but can also create vulnerability and risk for the peer.
Epistemological Foundation: Nothing About Us Without Us
This mixed method study is rooted in a transformative-emancipation paradigm. The context of this study is working with members of a marginalized group, individuals living with severe mental illness, to better understand the services they provide and receive. This paradigm informs the methodology and requires the community’s involvement in the design and
Stevens, Dissertation implementation of the study. Through focus groups, peers were key in the item-generation and content validity testing of the survey. The final survey was distributed electronically to a larger sample of peers across the state. For these reasons, the most effective research method is a sequential exploratory mixed method design which maximizes the involvement of the marginalized group being studied.
Foregrounding
I was fortunate to serve on Missouri’s State Advisory Council to the Department of Mental Health (DMH) in the role of DMH representative. During my time on this council, I met advocates for peer services, many of whom were peers themselves. The peer leaders and advocates on the council were adept at challenging state leadership, calling for change, and asking questions that non-peer professionals had not thought to ask. Throughout this work, they wove in their personal experiences of trying to seek help through DMH services. Their voice drove policy and called on non-peer professionals to examine their perspectives and challenge any implicit bias in state-wide policies.
I have also been fortunate to assist in small segments of the training for peers in Missouri, specifically the segments on trauma and adolescent brain development. In these trainings, I was working with peers not yet certified or hired by agencies. This peers-in-training were still learning how to use their lived experience to benefit their clients and satisfy agency policy while also protecting their own personal recovery. Working with these peers created curiosity about the delicateness of the work they are asked to do. I began to wonder how trained and certified peers navigate this balance of using their lived experience as a tool for change with the need to maintain some form of professional boundaries, particularly as boundaries are protective for both the client and the peer.
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I hope this research can give voice to the work being done by peers and help both peer professionals and the non-peer professionals who work with them to have a richer understanding of the peer to client relationship. This understanding can be used to inform training, policy development, and establish a fuller picture of how peers work with their clients.
Chapter Two:
Literature Review
Introduction
This literature review consists of three primary sections: the history of the consumer movement and recovery, the current state of peer services, and consideration of peer services from the perspective of the psychodynamic theory of self psychology. It will close with a description of the gaps in the literature and where this study will fit within those gaps.
The first section begins with an examination of the literature reviewing the history of the mental health peer movement and the resulting peer profession. Within that historical examination, literature is explored to illustrate how the model of recovery developed and where peer support services fit within that model. A historical review is important to highlight the social justice origins of the recovery model as well as the relevance to peer support services and current social work practice. This section closes by illustrating where peer support services fit within the model of recovery that is used by community-based mental health services.
The second section outlines the current state of peer support services within our modern array of community-based, mental health services and then reviews studies of current peer services. Existing studies can be categorized into three primary categories: feasibility studies, studies comparing peer to non-peer staff, and studies exploring unique qualities possessed by peers (Davidson et al., 2012). This section will close with a consideration of the use of lived experience and boundaries.
The third section explores the psychodynamic modality of self psychology beginning with a broad overview of the theory. Following the theoretical overview is an exploration of
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literature that considers the model of recovery and peer support services, including boundaries and the use of lived experience, through the lens of self psychology. Due to its applicability to peer support services, self psychology’s concept of a twinship need will receive particular attention.
Finally, in consideration of the literature reviewed, the literature review closing will outline gaps in research and position this study within those gaps.
History of the Consumer Movement and Recovery
The Consumer Movement
While the prevalence of paid peer support is relatively recent, the concepts of peer support and advocacy are not new. Tomes (2006) wrote that psychiatry has a long history of patient resistance beginning with the nineteenth-century efforts led by Elizabeth Packard. As outlined by Burns (2018), in 1860 Elizabeth Packard was removed from her home and locked in the Illinois Hospital for the Insane. At the time, wives could be detained in a psychiatric hospital without a trial. Her detainment, orchestrated by her husband, came after she began to speak out publicly against her husband’s religious beliefs. Elizabeth Packard was a prolific writer and wrote letters, essays, and pamphlets during her three-year detainment, continuing to write books and papers throughout her life. Her husband, Theophilus Packard, said of her, “Mrs. Packard’s mother was an insane woman, and several of her relatives are insane; and, therefore, Mrs. Packard’s insanity is hereditary, consequently, she is hopelessly insane” (Burns, 2018). Elizabeth Packard countered, “It is my God-given right to superintend my own thoughts … I do, and shall, judge for myself what is right for me to think, what is right for me to speak, and what is right for me to do” (Burns, 2018). Due to her writings and advocacy with state and federal government, many states adopted reformed commitment laws (Burns, 2018).
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While they were born from the earliest patient-resistance roots in the 1860s and the work of activists such as Elizabeth Packard, mental health activism movements did not fully emerge until the radicalism of the 1960s (Tomes, 2006). In addition to the impetus provided by the social justice activism of the decade, mental health activism was rooted in the tenets of the antipsychiatry movement, a professional-led movement orchestrated by the psychiatrists R.D. Laing and Thomas Szasz (Ostrow & Adams, 2012). They championed the argument that psychiatry was making patients worse instead of better, necessitating a change in the mental health treatment system. While today’s consumer movement has moved away from many of the principles of the anti-psychiatry movement, “both can be considered civil rights movements, and link their emergence to others including the gay pride movement and the women’s liberation movement amongst others” (Ostrow & Adams, 2012).
In addition to the anti-psychiatry movement, the concurrent deinstitutionalization efforts across the country were a driving force behind what came to be known as the mental health liberation, or survivor, movement. The early survivor movement was not the cause of deinstitutionalization policies; instead, deinstitutionalization was the impetus, in part, of the movement (Tomes, 2006). Activists in this movement worked to increase awareness that individuals with severe mental illness are vulnerable to human rights violations, particularly involuntary detentions (Funk et al., 2005). Unlike the anti-psychiatry movement, these efforts were not led by professionals but by individuals with mental illness who identified themselves as ex-patients or survivors. Influenced by other social justice causes of the time, “they celebrated ‘mad pride,’ suggesting that the route to wholeness lay in accepting their uniqueness and changing society so that their differences could be accepted, rather than used as grounds for involuntary confinement and repressive ‘treatment’ regimen” (Tomes, 2006, p. 721).
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Judy Chamberlain’s memoir, On Our Own (1978), is considered to be seminal to the survivor movement (Ostrow & Adams, 2012; Tomes, 2006). Through her own poignant experiences of psychiatric hospitalizations and the stories of other patients, she laid the foundation for the movement and its objectives. Chamberlin argued that patients should control their treatment and design their own course of care (Chamberlain, 1978; Myrick & del Vecchio, 2016; Tomes, 2006). Her work was an organizing force behind the movement for system changes leading to recovery-oriented services (Tomes, 2006).
In keeping with the survivor movement concept of nothing about us without us, it is important to view the history of the survivor movement from the perspective of a participant of the movement. For that reason, in this literature review, I will consider Judy Chamberlain’s perspective. In On Our Own, Chamberlain uses her lived experience to amplify the injustices of the mental health system prior to a recovery-oriented transformation. She wrote, “We had experienced depersonalization, the stupefying effects of drugs, the contempt of those who supposedly ‘cared’ for us … It is primarily a method of social control” (Kindle location 1787). She argued against the power dynamics inherent in the traditional, medical model of treatment of the time, “The present system, in which the givers of help derive status and financial rewards, while those who seek help are seen as needy or sick, perpetuates the rigid separation between the helper and the helped” (Kindle location 3986). Instead, she advocated for a system in which there is not such a sharp distinction between those needing help and those providing help, “When the emphasis is on people helping one another, the gulf between ‘patient’ and ‘staff’ disappears. Someone can seek help from others without being thought of as sick or helpless. The same person who seeks help can also offer it” (Kindle location 371). She writes of a different kind of mental health system, “What I define as a true alternative is one in which all basic decision-
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making power is in the hands of those the facility exists to serve” (Kindle location 580). Her lived experience of psychiatric hospitalization lent her thoughts credibility that served as an enduring rallying cry to the movement.
As the movement progressed into the 1970s and 1980s, two distinct groups emerged: those who identified themselves as survivors/ex-patients and those who identified themselves as consumers. Survivors, similar to the ideas in Judy Chamberlain’s writings, were dedicated to developing alternatives to traditional, professional-led treatment. Consumers were somewhat more accepting of the medical model and wanted to improve the traditional system of care (Ostrow & Adams, 2012). Ostrow and Adams wrote, “Despite those fundamental differences, both groups rejected the politics of psychiatric control over people with mental illnesses; the consumer movement rejected it in favor of a more collaborative approach with mental health professionals” (p. 73). Another distinction between the survivor and consumer groups is that survivor/ex-patient advocacy focused on the right to refuse treatment, while consumer advocacy focused on the right to have access to treatment.
In 1978, President Carter formed the President’s Commission on Mental Health. Due to the advocacy of the 1960s and 1970s, Priscilla Allen, a consumer, was included in this commission (Tomes, 2006). Also in 1978, the National Institute of Mental Health (NIMH), the organization responsible for the deinstitutionalization movement, invited patient activists to their conferences and revised their mission to include self-determination and consumer empowerment (Tomes, 2006). In the 1980s, two different national organizations were formed, the National Association of Mental Patient associated with the survivor movement and the National Association of Mental Health Consumers associated with the consumer movement (Tomes, 2006). As the career of peer support specialists emerged from the efforts of the consumer
Stevens, Dissertation movement, this review will now follow the consumer movement’s efforts to improve or transform traditional services.
In the 1980s and 1990s, the consumer movement took on a prominent role in America’s mental health system. With the cost control and managed care era of the mid-80s, the benefits and outcomes of services were under increased scrutiny, “Consumer/survivor perspectives entered policy discourse in the wake of policy failures and have flourished in a climate of perpetual crisis and tight budgets” (Tomes, 2006, p. 745). In 1985 SAMHSA funded Alternatives, a conference for consumers. In this forum and others, the concept of recovery began to emerge as a guiding principle for mental health service transformation. Focusing on recovery as the desired outcome of treatment was significantly different than contemporary values of psychiatry (Corrigan et al., 2004). Courtenay Harding et al.’s studies (1987) were the first to challenge the traditional model of treatment and demonstrate the effectiveness of recovery. Ostrow and Adams (2012) wrote of Harding et al.’s studies that, “these studies demonstrate the ability of some people to lead a fulfilling life despite the persistence of symptoms or having remission of symptoms” (Ostrow & Adams, p. 71).
The Concept of Recovery
As recovery-oriented models gained support by both consumers and professionals, this change was reflected in systemic-level changes. Both the 1986 State Comprehensive Mental Health Plan Act and the restructuring of SAMHSA in 1992 required consumer parity, meaning that mental health disorders and substance use disorders were required to be treated the same as other health care issues (Tomes, 2006). In the 1990s there was a growing shift from expertdriven quality efforts to consumer-driven efforts, “consumer/survivors soon began to demand a greater role in developing the measures used to compare treatments, to ensure that outcomes they
Stevens, Dissertation particularly valued, such as the ability to live independently or to hold a job, were included” (Tomes, 724). In 1993, Anthony published what was considered to be the most established definition of recovery at the time:
Recovery is a deeply personal, unique process of changing one’s attitudes, values, feelings, goals, skills and/or roles. It is a way of living a satisfying, hopeful, and contributing life even with limitations caused by illness. Recovery involves the development of new meaning and purpose in one’s life as one grows beyond the catastrophic effects of mental illness. (p. 527)
In an elaboration on Anthony’s (1993) definition of recovery, Arthur Frank (1995) described three narratives of recovery: the restitution narrative, or the story of how consumers’ lives were prior to illness; the chaos narrative, or their experience when in the midst of illness; and the quest narrative which is the basis for the ongoing recovery movement. Ostrow and Adams (2012) described Frank’s quest narrative:
The quest narrative endows the person with the fortitude to challenge their suffering, learn from it, and use their experience to their advantage … gives the person voice to tell their individual story. This makes the quest narrative like the rising of the phoenix – the symbol of reinvention (p. 71).
This description illustrates how the concept of recovery transcended the idea that getting better only meant returning to a pre-illness baseline. Instead, recovery allows space for the hope of creating something more.
By 1998 models of recovery and consumer voice became more firmly established in America’s mental health system and 27 states had paid consumer positions (Tomes, 2006). Arguably the strongest push for recovery came in the 1999 Surgeon General’s report on mental
Stevens, Dissertation illness. This was the first time that national policy asserted that recovery should be the focus of services and that the existing system would require substantial changes to meet recovery-oriented goals (Ostrow & Adams, 2012). This report signified a substantial shift in America by involving consumers of mental health services in the development of major policy, as Tomes wrote, the role of consumers evolved “ … from no part in the Mental Health Study of 1955 to a small but significant presence in the 1978 Carter Commission, to a highly visible role in the 1999 surgeon general’s report on mental health” (p. 720).
The work of systemic transformation continued with the turn of the century. In 2003, President George Bush formed the New Freedom Commission in order to assess the current state of the mental health system. The commission found that the system was fragmented and needed a fundamental transformation (New Freedom Commission, 2003). The Commission created six goals and 19 recommendations, including a goal that, “called for the mental health system to be consumer-driven and clearly support a recovery vision and recovery-oriented systems of care” (Ostrow & Adams, p. 74). The commission also targeted remaining disparities and gaps in access (Myrick & del Vecchio, 2016).
Part of the ongoing work of mental health system transformation was to accurately capture the concept of recovery in a definition. It was challenging to define a concept that is largely subjective and to relay the idea of recovery as a continuum versus an outcome. Additionally, there continued to be some discrepancy between how consumers and professionals considered recovery, “While practitioners and clinical investigators may be assuming that recovery means … an absence of symptoms … advocates and people in recovery themselves may be referring more to having a safe, dignified, and gratifying life in the presence of ongoing disability” (Davidson & White, 2007, p. 112). Another challenge in articulating a definition is
Stevens, Dissertation that clinical treatment is just one element of recovery whereas, “The majority of recovery processes, like the majority of the person’s life, take place outside of acute care or other treatment settings in the community-based contexts in which people pursue their desires to live, love, learn, work, and play” (Davidson & White, 2007, p. 114). Clinical treatment is not even necessarily a component within the concept of recovery; a person can be living in recovery without being in clinical treatment. While many who identify themselves as being in recovery utilize clinical support such as therapy or medication, many others do not or only access these supports sporadically. Ostrow and Adams (2012) wrote:
It is an acceptance of what we know to be true: that individuals who struggle to connect with their existence, and are labeled ‘mentally ill’ are alive and human whether they use the treatment system, are helped by it, are abused by it, reject it, or feel stifled by its fundamentally flawed means of ‘engaging’ consumers in care (p. 10).
Likewise, recovery is also not a concept that ends when a person in clinical services no longer needs those services. It is instead more about “recovering a life, the right to participate in all facets of civic and economic life as an equal citizen” (Slade, et al., 2014, p. 15).
Despite the challenges inherent in defining this concept, in 2005 SAMHSA released their first definition of recovery, “Mental health recovery is a journey of healing and transformation enabling a person with a mental health problem to live a meaningful life in a community of his or her choice while striving to achieve his or her full potential” (SAMHSA, 2005). Components of recovery were listed as self-direction, individualized and person-centered, empowerment, holistic, non-linear, strengths-based, peer support, respect, responsibility, and hope. Keeping these core components, SAMHSA released a revised definition of recovery in 2012 which they called a working definition. In this new working definition, recovery is defined as, “a process of
Stevens, Dissertation change through which individuals improve their health and wellness, live a self-directed life, and strive to reach their full potential” (SAMHSA, 2012, para. 5). The evolution of the mental health system in America and the evolving definition of recovery can be traced directly back to the “collected efforts of people living with serious mental illness” (Watson, 2012, p. 291). Progress occurred because they shared their recovery narratives with the larger community (Ostrow & Adams, 2012). Tomes (2006) sums up the struggle, both past and ongoing, of the transformation of America’s mental health system:
Precisely because it has been a contested area for so long, the field of mental health has produced some refreshingly honest, insightful discussions of the problems inherent in patient empowerment. That initiative has had to contend with the jagged edges of change: a long tradition of mistrust between physicians and patients; a plethora of advocacy groups with very different philosophies and priorities; intense disagreements over treatment modalities; fiscal limitations on available resources; and the entrenched stigma that surrounds mental disease. (p. 726)
Even in the era of recovery-oriented services and service delivery systems, there are some inherent challenges within the model of recovery. There is the ongoing concern that the experience of recovery has been hijacked by professionals and moved away from the subjective experiences of peers to a more professional-led model (Slade, et al., 2014). Tomes (2006) asserts that while consumer influence has grown, “it would seem that their networks of influence bear little resemblance to the institutional resources and influence commanded by the pharmaceutical or insurance industries” (p. 724). It is an ongoing challenge to incorporate a concept such as recovery into the mainstream mental health system without altering it to the point that it becomes as prescriptive and professional-driven as previous treatment models. There is also a critique that
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the current, more holistic, thinking could create an environment that is hostile towards drug treatment to the point that people suffer from not accepting medication as a component of their recovery. However, on the other side of the scale, an overemphasis on medication programs can divert attention and funding from more integrated approaches that are in line with recovery such as housing and job programs (Tomes, 2006). The balance between making medication accessible as a tool in recovery but not allowing it to overshadow other tools and services is difficult to achieve. Current thinking attempts to mitigate this critique by highlighting the individual’s choice regarding medication and all other facets of treatment.
An additional challenge concerns how to collect evidence on the outcomes of recovery models. The subjective nature of recovery does not lend itself well to collecting meaningful and generalizable data. In the midst of calls for increased empirical evidence, some consumer advocates championed a stance of “we are the evidence,” claiming no measurement was needed in order for the construct of recovery to be true, due to the experiential understanding of those who have lived experience of recovery. The evidence is inherent in “the capacity of consumers to have a dialogue with one another to discover and begin to label common elements in their individual and collective experience” (Ostrow & Adams, 2012, p. 75). The SAMHSA definition was a step towards attempting to articulate the concept in a way that could assist further research and the development of recovery-oriented services.
While challenges and conflicts are present, there is general agreement now on what constitutes recovery, in keeping with SAMHSA’s more inclusive 2012 working definition of the term. Recovery continues to emphasize non-linear thinking, self-determination, person-centered approaches, individualized treatment plans, and integrated programs (Davidson & White, 2007; Slade et al., 2014; Tomes, 2006). There is also agreement with the idea that there are many paths
Stevens, Dissertation to recovery so providers best support recovery by enhancing access to a wide variety of services and opportunities (Davidson & White, 2007), including the integration of community-support services such as housing, jobs, and peer groups (Tomes, 2006).
Recovery is also a concept that takes into account the reality of stigma and discrimination aimed at people with mental illness. Advocates work towards a model of social inclusion, to change the culture instead of the person (Slade et al., 2014). Recovery marries the internal work of living in a world of stigma with social advocacy efforts, “Overcoming the scars of discrimination requires the development and use of new muscles, often leaving people feeling stronger than prior to the onset of their illnesses” (Davidson & White, 2007, p. 113). Individuals in recovery seek to gain control of their lives even while continuing to live in the midst of stigma against mental illness. Slade et al. (2014) wrote, “ … the broadest – and most important –challenge is societal change, which will involve professionals and people with lived experience becoming partners and social activists” (p. 16). It is directly from this advocacy that the profession of peer support was developed (Doughty & Tse, 2001).
The Current State of Peer Services
SAMHSA’s 2012 working definition of recovery included ten guiding principles: hope, person-driven, many pathways, holistic, peer support, relational, culture, addresses trauma, strengths/responsibility, and respect (SAMHSA’s Working Definition of Recovery, 2012). Peer support services are now identified as one of the ten interventions that support recovery (Slade et al., 2014), and are a defining characteristic of both the consumer movement and recovery (Ostrow & Adams, 2012). As a strategy of the recovery model, peer support has become the fastest-growing occupation in mental health today (Doughty & Tse, 2001; Asad & Chreim, 2016;
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Gillyserard et al., 2013; as cited in Vandewalle et al., 2017). Peer services are considered essential to following a recovery-based model (Davidson & White, 2007, p. 117).
Current Definition of Peer Support Services and Peers
As the recovery model developed, so did the recognition of the need to include the users of mental health services in the treatment of their peers (Miller et al., 2016; Tambuyzer et al., 2014 as cited in Vandewalle et al., 2017). Ostrow and Adams (2012) offer a broad definition of peer support services as, “ … a process of bringing mutual support and shared responsibility for recovery to relationships between peers with lived experience of mental health recovery” (p. 8). This process is based on the principles of respect, shared responsibility, and mutuality (Myrick & del Vecchio, 2016; Solomon, 2004) and establishes a relationship around the perceived similarities of those with severe mental illness (Salzer et al., 2010). Initially considered an alternative form of treatment, peer support services are now embedded within mainstream mental health treatment services (Gruhl et al., 2015). SAMHSA defines peer support services as “including the sharing of experiential knowledge and skills and social learning … consumers encourage and engage other consumers in recovery and provide each other with a sense of belonging, supportive relationships, valued roles, and community” (Ostrow & Adams, 2012). Peer support workers, or peers, are broadly defined as people with the lived experience of mental illness who use their experiences and skills gained from recovery and mental health services to assist those in their own processes of recovery (Ashcraft et al., 2007; Davidson et al., 2012; Monk et al., 2015; Solomon, 2004; Vandewalle et al., 2017). Throughout the evolution of the definition of peer support services, peer-specific training curriculums were developed, which include how and when to disclose lived experiences in a way that effectively supports others
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(Ashcraft et al , 2007). As states engaged in an ongoing process to enhance and improve peer worker training, the need for a set of core competencies for peer workers became apparent.
In 2015 SAMHSA began the work of identifying and refining core competencies for peer workers in conjunction with peers, stakeholders, and public comment. These competencies, published in 2018, are intended to serve as foundational competencies for peers working in any role or setting, with the understanding that additional competencies may need to be added based on specific roles or settings. The core competencies identify five foundational principles. First, peers are recovery-oriented, “Peer workers hold out hope to those they serve, partnering with them to envision and achieve a meaningful and purposeful life” (Core Competencies). Second, peers are person-centered and, “personalized to align with the specific hopes, goals, and preferences of the individual served and to respond to specific needs the individuals have identified to the peer worker” (Core Competencies). Third, peer services are voluntary and, “do not dictate the types of services provided or the elements of recovery plans that will guide their work with peers” (CC). Fourth, the relationships between peers and consumers are relationshipfocused and, “respectful, trusting, empathetic, collaborative, and mutual” (CC). Finally, peer workers are trauma-informed and “utilize a strengths-based framework that emphasizes physical, psychological, and emotional safety and creates opportunities for survivors to rebuild a sense of control and empowerment” (CC). From these principles, SAMHSA published twelve categories of peer competencies, each with a set of skills, knowledge, and/or attitude that is needed in order to successfully meet the competency:
● Engages peers in collaborative and caring relationships
● Provides support
● Shares lived experiences of recovery
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● Personalizes peer support
● Supports recovery planning
● Links to resources, services, and supports
● Provides information about skills related to health, wellness, and recovery
● Helps peers to manage crisis
● Values communication
● Supports collaboration and teamwork
● Promotes leadership and advocacy
● Promotes growth and development
Peer services continue to grow. In a survey of 508 peers in 44 states, Cronise et al. (2016) found that more than half of their respondents completed 20-80 hours of peer support training and that this training included dealing with boundaries and the skill of sharing their recovery stories. Peers work in multiple job settings that include consumer-run services, community clinics, and residential facilities (Cronise et al., 2016; Moran et al., 2013; Vandewalle et al., 2017). The variety of roles that peers currently serve has greatly expanded (Bennetts et al., 2013, as cited in Vandewalle et al., 2017) which has potentially contributed to findings that “lack specificity about the nature of the peer support and, in particular, the role, tasks, and work activities of the peer specialists” (Cronise et al., 2016). There is general agreement in the literature that one of the key roles, born from a similar lived experience, is providing hope to consumers that recovery is achievable (Doughty & Tse, 2001; Monk et al., 2015; Ostrow & Adams, 2012) . While peers spend most of their time working directly with their consumer clients (Jacobson et al., 2004), other roles include multidisciplinary team members, providing training about recovery to other peers and clinicians, providing health and wellness services,
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residential and illness management, communicating with other providers, helping to address stigma, and facilitating peer support groups (Rebeiro et al, 2016; Walker & Bryant, 2013; as cited in Vandewalle, 2017; Salzer et., 2013, as cited in Cronise et al., 2016). Peers are further defined by their unique use of lived experience in an empathy-based relationship (Chinman et al., 2014; Cronise et al., 2016; Myrick & del Vecchio, 2016) . Ostrow and Adams wrote, “ … peers are in a unique position to promote recovery and wellness through lived-experience approaches to support individuals with mental disorders that are based on empowerment, self-direction, and mutual relationships” (p. 9). Peers are also distinguished by the guiding principles of, “being voluntary, non-judgmental, empathic, respectful, requiring honest and direct communication, mutual responsibility, power-sharing, and reciprocity” (Myrick & del Vecchio, 2016, p. 198).
Along with the unique attributes of peers, comes unique challenges including role conflict, ambiguity, and boundary issues (Moran et al., 2013 as cited by Myrick & del Vecchio, 2016). These challenges, “resulted in uncertainty about how much of their lived experiences to share” (Alberta et al, 2012 as cited by Myrick & del Vecchio, 2016). In a study conducted by Kemp and Henderson (2012), they identified primary peer challenges as lack of role clarity, workload expectation, lack of supervision, and concerns about self-disclosure. Vandewalle et al made similar findings in their 2017 study, where peers reported that an issue they found challenging was, “the possibility of feeling emotional distress when engaging in experiential sharing with peers.” For one peer worker involved in their study, the repetitive experience of sharing their lived experience with multiple clients was emotionally overwhelming and resulted in their leaving the peer profession (Vandewalle et al., 2017).
Feasibility
and Outcomes of Peer Services
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Across the different peer roles, several favorable results have been found in studies on the outcomes of peer services (Chinman et al., 2014; Clarke et al., 2000; Davidson et al., 2004; Davidson et al, 2006; Monk et al., 2015; Myrick & del Vecchio, 2016). These positive outcomes include reduction in the frequency of inpatient admissions, improved relationships with other providers, increased engagement with care (Chinman et al., 2014; Gruhl et al., 2015), reduction in symptoms, increased community integration (Gruhl et al., 2015), reduction in duration of psychiatric hospitalizations, and reduction in the cost of care (Chinman et al., 2001; Monk et al., 2015). Other favorable outcomes included reported intrapersonal improvements such as increased levels of sense of empowerment, hopefulness for recovery, and overall sense of improved quality of life (Chinman et al., 2014; Gruhl et al., 2015; Myrick & del Vecchio, 2016). It has been found that peer workers engaging on a deep and authentic level is considered a key to their positive outcomes (Chinman et al., 2014; Davidson, et al., 2012; Lloyd-Evand, 2014, as cited in Vandewalle et al., 2017; Vandewalle et al., 2017). Consumers often view the information provided by peers as more credible due to the peer’s own lived experience with mental health recovery (Woodhouse & Vincent, 2006 as cited by Monk et al., 2015)
Psychodynamic Theory: Self Psychology
The concept of recovery and peer support services can be understood with greater depth when considered from the perspective of self psychology. This section will begin with an overview of the theory and then illustrate theoretical alignment with recovery and the work of peer support services.
Overview of Theory
Kohut defined the self as the source, “for our sense of being an independent center of initiative and perception, integrated with our most central ambitions and ideals and with our
Stevens, Dissertation experience that our body and mind form a unit in space and a continuum in time” (Kohut, 1977, p. 177). With the conceptualization of self psychology, Kohut turned away from Freud’s drivecentered, linear development of self-love to object love, to a concept of development that was less linear and less polarized (Flanagan, 2016, p. 7). Kohut “did not view self-love and object love as mutually exclusive” (Flanagan, 2016). In contrast to the classical idea that a person must redirect a finite amount of libidinal energy from self to others, “self psychology is based on the belief that the more attunement and love people have for themselves, the more they will have for others” (Flanagan, 2016, p. 3932).
In self psychology, the goal of healthy development is to achieve a cohesive (nuclear) self capable of maintaining well-being and self-regulation (Elson, 1986; Flanagan, 2016). This development is accomplished through the use of selfobjects (Elson, 1986; Flanagan, 2016; Lessem, 2005). Chessick (1993) defines selfobjects as an object “experienced intrapsychically as providing affect attunement, consensual validation, tension regulation and soothing, recognition of one’s autonomous potential, and restoration of a temporarily threatened fragmentation of the self through a variety of activities and comments” (p. 357). According to Kohut, selfobjects are used in the creation of a cohesive self through the process of transmuting internalizations which is when, “a function formerly performed by another (selfobject) is taken into the self through optimal mirroring, interaction, and frustration” (Elson, 1986, p. 252). Through transmuting internalization the internalized selfobjects change and become unique to the person, not merely a duplicate of the selfobject (Elson, 1986; Flanagan, 2016). Selfobject needs are present throughout life, changing and maturing in the course of healthy self development (Flanagan, 2016).
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Moving away from the Freudian structure of id, ego, and superego; Kohut postulated that self is composed of three poles: the pole of the grandiose self, the pole of the idealized self, and the pole of twinship (Elson, 1986; Flanagan, 2016). Each pole, or part of self, develops through fulfilling the unique selfobject need of the pole. The grandiose pole has a mirroring selfobject need, “people who will reflect and identify its unique capacities, talents, and characteristics” (Flanagan, 2016, p. 4051). The idealized part of self needs, “to have someone strong, calm, and wonderful to idealize and merge with in order to feel safe and complete within the self” (Flanagan, 2016, p. 4115). The twinship pole selfobject need, “refers to the need to feel that there are others in the world who are similar to oneself” (Flanagan, 2016, p. 4159). Each poles’ needs; mirroring, idealizing, and twinship; are met through selfobjects.
In self psychology, empathy is not only the primary clinical tool used in therapy but also the context needed for the development of the cohesive self through selfobjects (Elson, 1986; Flanagan, 2016; Lessem, 2005). Kohut described empathy as the tool we use to understand, “the essence (of another’s) inner state” (Kohut, 1977, p. 102). Development of the self occurs through relationships that offer both empathic attunement and also manageable empathic failures (Flanagan, 2016). Kohut’s conceptualization of empathy was not the same as our current kind and gentle colloquial use of the term, “...one could have empathy for an ax murderer … to understand from within the experience of another, no matter what the experience. Much more than a feeling, empathy is a way of knowing” (Flanagan, 2016).
Recovery and Peer Support Services Through a Self Psychology Lens
Recovery and Self Psychology.
It is interesting to note that the development and growth of both self psychology and the recovery model occurred during the 1960s-1980s which may explain their concept alignment. A
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guiding principle of the model of recovery is to reduce stigma through societal acceptance of those with mental illnesses (SAMHSA’s Working Definition of Recovery, 2012). Self psychology provides a framework for understanding the impact of the stigma as the theory “ … can be used to understand the suffering of self-caused by social ills … society, when it is oppressive, can be seen as a selfobject that has tremendous power to destroy and that often contributes to a lack of self cohesion” (Flanagan, 2016). The recovery model was developed, in part, as a response to the damaging effects of the stigma, or the oppressive society. The current recovery model incorporates the goal of social change through, “… professionals and people with lived experience becoming partners and social activists, to challenge stigmatizing assumptions” (Slade 16).
There are also numerous correlations between self psychology and the recovery model’s understanding of self and healthy development or growth. Flanagan (2016) writes that modern self psychology is focused on the individual, views the self as desiring and able to grow if needs are met, and holds that there is an “innate, vigorous, motivating ‘push’ towards health” (p. 169).
This view of human nature is also reflected in the underlying value of recovery that:
Recovery-oriented care is based on the recognition that each person must be either the agent of and/or the central participant within his or her own recovery journey … It follows from this core value that services also should instill hope; be person-and familycentered; offer choice; elicit and honor each person’s potential for growth; build on a person’s/family’s strengths and interests; and attend to the overall life, including health and wellness, of a person with mental illness and/or addiction (Davidson & White, 2007, p. 118).
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Well-being or vitality are common themes in both concepts. Kohut wanted for people to “work creatively with vitality and joy whether laying a brick wall, making a meatloaf, driving a truck ... the ability to work creatively was the supraordinate motivation in human nature and the hallmark of mental health” (Flanagan, 2016, p. 186). This aligns with one of the major dimensions of recovery, “Purpose,” which seeks strategies to support meaningful activities in life such as work, school, caretaking, or creative endeavors (SAMHSA’s 10 Guiding Principles). In both concepts, it is not enough to merely work or survive but to find meaning, creativity, wellbeing, and vitality. While the advocacy-born model of recovery does not claim roots in any psychodynamic theory it aligns with core concepts of self psychology. Table 1 illustrates the alignment between, SAMHSA’s guiding principles of the recovery model and guiding tenets of self psychology. Table 1 is an abridged comparison table; the complete comparison table with cited quotations can be found at Appendix A.
Table 1.
Comparison of the Recovery Model and Self Psychology
Guiding Principles of the Recovery Model (“SAMHSA’s Working Definition of Recovery”, n.d.)
Hope
Person-Driven
Self Psychology
Second chance at developing a cohesive self
(Orange 1995, as cited in Lessem, 2005, p. 210; Friedman 1986, as cited in Lessem, 2005, p. 210)
Self-object function of recognition of autonomous potential
(Chessick 1993, as cited in Flanagan, 2016, p. 175)
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Many Pathways
Development is non-linear and health (cohesion) is not identical for all (Flanagan, 2016, p. 172)
Holistic Focus on well-being and wholeness (Flanagan, 2016, p. 169–186)
Peer Support Twinship (Flanagan, 2016, p. 182)
Relational Connectedness, selfobjects (Flanagan, 2016, p. 172; Geist, 2009)
Culture
Self as a social construct (Flanagan, 2016, p. 169)
Addresses Trauma Trauma as damaging to a cohesive self (Flanagan, 2016, p. 187)
Strengths/Responsibility
Strength of the self/Connectedness (Flanagan, 2016, p. 169)
Respect Social issues as a selfobject (Flanagan, 2016)
Peer Support Services and Self Psychology.
Beyond the philosophical principles of recovery, self psychology can also be used to explore the function and use of community-based, peer support services to help those living with mental illness. Elson (1986) explained that “In large numbers, individuals seen in social agencies and in clinics are unable to have or maintain sufficiently continuous selfobject relationships
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necessary to the sustenance of self” (p.6). These individuals’ struggles for cohesion come from deficits in their self-structure born from unmet selfobject needs (Elson, 1986, p. 6). Those deficits can be caused “from an inability to cue other, both earlier and later selfobjects to their needs and wishes, in many instances to even define those needs and wishes” (Elson, 1986, p. 6).
One of the guiding principles of recovery is that “Recovery is supported through relationships and social networks” (SAMHSA Guiding Principles) and one of the core competencies of peers is creating a “relationship between the peer worker and peer that is respectful, trusting, empathetic, collaborative, and mutual” (SAMHSA’s Core Competencies). Self psychology explains how lacking relationships with potential selfobjects can create self-structure deficits. This explanation supports the need for the mutual and empathic relationships that are the bedrock of peer services.
With the understanding of the self structural deficits of consumers and the role of peer workers, we can envision peers as potentially functioning as a selfobject meeting the needs of twinship. Flanagan (2016) describes the energy that motivates the selfobject need of the twinship pole as, “born of the need not to feel different or isolated or weird, and that anxiety arises when there is no one ‘the same as me’” (p. 182). The consumers whom peer support workers serve, due to the symptoms of their mental illnesses and societal stigma, are often isolated and lacking a feeling of twinship which can “make people feel like they are unraveling and losing touch with themselves” (Flanagan, 2016, p. 183). Through their sharing of lived experiences, peers show sameness and can meet the twinship need to feel that “there are others in the world who are similar to oneself,” which, “provides another kind of universal sustenance from selfobjects” (Flanagan, 2016, p. 182). Peer support services also aim to connect individuals to meaningful employment, a community of mental health consumers, and potentially to the mental health
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consumer rights advocacy movement to reduce discrimination and stigma (Davidson & White, 2007). These connections provide even further opportunity to meet selfobject needs; Elson (1986) explains that as individuals mature, “ … the selfobjects we seek for sustenance will include not only individuals, but also one’s profession or vocation, particular skills or attributes, cultural and civic activities which reverberate to the standards, values, and beliefs of our core nuclear self” (p. 19).
While twinship needs seem to align most with the role of peers, peer support services should also be considered from the perspective of idealizing and mirroring selfobject experiences. Lessem (2005) write:
Mirroring, idealizing, and twinship experiences are conceptualized as always interwoven.
In every idealizing and mirroring experience, some of the other is present. In order for mirroring to be vitalizing, it must be experienced with someone at least a bit idealized. Likewise, in order for idealizing to be experienced as self-enhancing, the idealized person needs to be viewed as implicitly affirming. The selfobject experience of essential alikeness that is at the core of the twinship experience involves a background of affirmation (Fosshage 1997a as cited in Lessem, 2005, p. 54).
Peers have the potential to provide primarily a twinship experience but, according to Lessem, it would be intertwined with the affirmation of mirroring which, in turn, requires the peer to also serve as an idealized selfobject. Each of the poles and their selfobject needs can be seen in the different functions peers fulfill. The mirroring selfobject need refers to the need to feel, “affirmed and recognized, to feel oneself accepted and appreciated, especially when showing something valued about oneself” (Lessem, 2005, p. 39). For a person to feel mirrored they need the mirroring selfobject to behave towards them in a way that is admiring,
Dissertation understanding, and validating (Miller, 1996 as cited by Lessem, 2005). These behaviors align with the peer core competencies of demonstrating genuine acceptance and respect, demonstrating understanding the consumer’s experiences and feelings, listening with careful attention to the content and emotion being communicated, validating experiences and feelings, and celebrating the consumer’s efforts and accomplishments (SAMHSA’s Core Competencies for Peer Workers). The idealizing selfobject need refers to, “the need to feel linked to an admired other, creating an experience of a sense of calming and soothing, safety, strength, and/ or inspiration. It has to do with our need to merge with or feel close to someone we are confident in” (Lessem, 2005, p. 47). The peers’ use of lived experiences, particularly with their recovery experiences, can provide an object to idealize. This aligns with the peer core competencies of conveying hope about recovery through the sharing of lived experiences. Additionally, the peer’s roles of coaching, education, distributing information and resources, and teaching strategies can establish the peer as a figure with knowledge and skills, an object to be admired (SAMHSA’s Core Competencies).
Boundaries and Use of Lived Experience Through a Self Psychology Lens
The mechanism through which peers show sameness, and potentially meet a selfobject need, is their use of lived experience. Regularly sharing their experiences of symptomatic mental illness, trauma, and path of recovery has boundary implications that distinguish peer work from therapy. SAMHSA (2015) states that “shares lived experiences of recovery” is a core competency of a peer worker. They elaborate that: These competencies are unique to peer support, as most roles in behavioral health services do not emphasize or even prohibit the sharing of lived experiences. Peer workers
Stevens, Dissertation need to be skillful in telling their recovery stories and using their lived experiences as a way of inspiring and supporting a person living with behavioral health conditions.
There is no literature on the boundaries between peers and the people they work with that is written from a psychodynamic perspective. Therefore, an understanding of boundaries requires extrapolating concepts from psychodynamic literature regarding boundaries within a therapeutic dyad. Bridges (1999) defines a treatment boundary as, “a psychological containment field maintained by the therapist’s mental capacity to encompass the patient’s symptomatology and symbolic communications” (p. 293). Constructing therapeutically useful boundaries within a psychodynamic frame is a concept that is both complex and controversial (Bridges, 1999).
Treatment relationships have an outer boundary constructed of the fiduciary relationship and the code of ethics of the practitioner’s discipline. However, beyond this outer boundary each clinician chooses their treatment boundaries within their own ethical framework and theoretical orientation (Bridges, 1999). There exists among psychodynamic modalities, and even among therapists practicing within the same modality, a spectrum of thought and practice on boundaries (Bridges, 1999). On one end of the spectrum are therapists championing a traditional approach with more rigidly constructed boundaries, “avoiding even the appearance of boundary crossings and acknowledging the implicit authority of the therapist” (Bridges, 1999, p. 292). At the other end are therapists who, “favor an uncharted treatment approach of mutual discovery between therapist and patient” (Bridges, 1999, p. 292). Boundaries must be at once permeable enough to allow mutual influence, for the client to be able to use the therapist as a selfobject; but also secure enough to allow containment, and to provide the protection needed for the therapist and the patient to cross the boundaries within their minds safely (Bridges, 1999).
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Boundaries are defined as providing a protective factor for both therapist and client (Bridges, 1999). Geist; however, argues that we confuse boundaries with safety and that safety comes through connectedness and not therapist-imposed boundaries (Geist, 2009). He argues further that, “because transference is always a ‘continuation of an early reality’ in the present and an effort at self-healing, externally imposed boundaries impede rather than facilitate rekindled growth” (Geist, 2009). Geist advocates practicing within a context of connectedness where mutually facilitated boundaries are ever-evolving throughout the therapeutic relationship depending on the dynamics of the dyad, their personal subjectivities, and the current moment in treatment (Geist, 2009). Maintaining these sorts of mutually determined, fluid boundaries does come with some danger to the clinician who can experience an, “exquisite vulnerability that is inherent to an awareness of the embeddedness of all human experience in constitutive relational systems” (Orange, et al., 1997). Geist (2009) describes this vulnerability as potentially disruptive and destabilizing to the clinician’s own cohesive sense of self. He theorizes that it is this mutual vulnerability that creates the environment needed for the clinician to function as a selfobject for the client, fulfilling their selfobject need (Geist, 2009). In sharing the lived experience of their mental illness and recovery, peers are sharing moments and experiences that are highly affectively charged. They are operating in a manner similar to the connectedness that Geist describes and, while not clinicians, are also exposed to these vulnerabilities. As individuals also living with mental illness, it could even be argued that peers are potentially at an even higher risk of disruption to their self-structure. Numerous studies of peers indicate that peers find sharing their lived experiences as both a meaningful part of their work but also a clear challenge, in part because of the emotionally charged experience of repeatedly sharing these experiences (Kemp & Henderson, 2012; Moran et al, 2013 as cited in Myrick & del Vecchio, 2016; Vandewalle et al.,
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2017). As mentioned previously, Vandewalle et al. (2017) even cite a peer in their study who left their position as a peer because they were emotionally overwhelmed with the expectation to tell their story. Psychodynamic therapists choose when they have boundaries permeable enough to allow personal disclosures, but do so with years of training and consultation. However, the very nature of a peer worker being a peer worker serves itself as disclosure of mental illness and their job requires the sharing of their story. The sharing of these emotionally-charged experiences and peers’ responses, including emotional distress, also speaks directly to selfobject transference and countertransference within these relationships.
Transference and Countertransference
The concept of selfobject transference is distinct from the classical perspective of transference. One of the main differences is the involvement of the therapist, “The key to selfobject transferences is the concept of the selfobject: the way the analyst responds or fails to respond, her behavior, and her manner of related deeply affect and shape the patient’s momentby-moment self-experiences” (Orstein, 1990, p. 43). Selfobject transference is not a one-sided emergence of an infantile wish. It is inherently tied to the relationship with the therapist. The self-experience cannot be divorced from relationship. Contrary to the classical understanding of transference, self-experience is intricately tied to the experience of the other, “What emerges as transference, and how and what form resistances will take, is codetermined by both participants in the process” (Orstein, 1990, p. 44). Selfobject transference is not only a creation of both the therapist and patient, but also viewed as a tool for change.
While the literature on transference and countertransference is focused on a therapist/client dyad, selfobject transference is not a phenomenon limited to therapy. Instead, “all intimate relationships generate wishes and fears emanating from unmet and traumatized
Stevens, Dissertation childhood needs” (Ornstein, 1990, p. 42). This more expansive concept of transference allows the consideration of transference within the peer/consumer dyad. For example, shared lived experiences could generate in the consumer the desire to feel a likeness or sameness with the peer, which Kohut viewed as a twinship transference (Flanagan, 2016, p. 183).
When considering his own countertransference, “Kohut realized that these patients often left him feeling listless, bored, and disconnected. They were so wrapped up in themselves that the therapist could not feel useful or sometimes even real. They seemed not to need anyone at all and yet paradoxically seemed very fragile and prone to shame” (Flanagan, 2016, p. 170). This experience of negative countertransference parallels the negative experiences peers’ expressed in studies. For example, the peer whose “repetitive experience of feeling overwhelming emotions” caused him to leave the profession (Vandewalle et al., 2017). Peers described that the sharing of lived experience can trigger emotional distress and “emphasized that balancing the emergence of emotional distress is a precondition to retain meaningful employment” (Vandewalle et al., 2017).
The countertransference experiences of peers is directly tied to the nature of their helping relationship and warrants further exploration.
Closing
The recovery movement and the creation of peer support services is grounded in the advocacy of the mental health consumer rights movement. The current iteration of recovery encompasses ten basic principles: hope, person-driven, many pathways, holistic, peer support, relational, culture, addresses trauma, strengths/responsibility, and respect. Peer support workers, or peers, are now a mainstay of community mental health services. They use their own lived experience of mental illness and recovery to build a relationship with consumers that is based on mutuality and connection. Peers work under a set of core competencies that are recovery-
Stevens, Dissertation oriented, person-centered, voluntary, relationship-focused, and trauma-informed. Studies that consider the outcome and effectiveness of peer support services find positive benefits to the consumers they serve.
The principles of recovery and the core competencies of peers align with the major tenets of self psychology in a way that allows self psychology to be a lens through which to understand the peer/consumer relationship. Peer workers function in a way that allows them to potentially meet a twinship selfobject need through a relationship based on sameness, positive regard, and a sense of belonging and connection. Mutuality is established through the peer’s use of their lived experiences which affects the boundaries between peers and their consumers and leaves the peers vulnerable as they repeatedly self-disclose.
There are no current studies that look explicitly at peers’ use of lived experience, the effect of repeated self-disclosure on boundaries, and the implications for peers. Studies that provide data regarding the use of lived experience stop at listing the disclosure of lived experience as a peer role or a peer-identified challenge. Training programs for peers incorporate how to use lived experience; however, the emphasis is on how to most effectively use lived experience and not on how this creates more permeable boundaries or how this could potentially create vulnerability. This research is designed to look at peers’ level of comfort using their lived experiences to fully understand boundaries between peer and consumer and to better inform clinicians and agencies on how to support and train peers. The methodology of the study is informed by the social justice roots of recovery and peer support services.
Chapter Three:
Methodology
Introduction
Summary of Methodology
This study is composed of three major steps which will each be discussed in more detail throughout this chapter. First, a focus group was convened to discuss the boundaries within the peer helping relationship to modify an existing boundaries scale, the Boundaries in Practice Scale (BIP). Second, once the BIP was modified the focus group reconvened to review and comment on the modified scale. Finally, the modified scale was disseminated to a larger group of peers via SurveyMonkey.
Purpose and Research Questions
The purpose of this exploratory, sequential, mixed-methods study is to understand peers’ knowledge, comfort, and experience regarding the use of their lived experience; how training and clinical supervision affect the peer’s experience of using lived experience; and how the use of lived experience affects peer-to-client boundaries. Throughout this study, the term peers will be used for peer support specialists, as this is typically used by peers. The qualitative portion of this study used focus groups of peers to assist in the creation of a survey that considered peers’ use of lived experience and decision-making regarding boundaries, as well as their level of training and supervision in this area. The survey was constructed in SurveyMonkey and sent to a larger sample of peers for the quantitative portion of the study.
The primary research questions are:
1. How do peers perceive their use of lived experience within the peer-to-client relationship?
a. How comfortable do peers feel regarding using their lived experience within the peer to client relationship?
b. How knowledgeable do peers feel regarding when and how to use their lived experiences with their clients?
c. How much experience do peers feel they have in using their lived experiences to help clients?
d. Are there certain types of situations that cause peers to feel less knowledgeable or comfortable?
e. What ethical value do peers place on boundary decision-making, or the decision to share or withhold lived experience?
f. How does training impact comfort, knowledge, and/or experience with peers’ use of lived experience with clients?
g. How does supervision with a qualified mental health professional impact comfort, knowledge, and/or experience with peers’ use of lived experience with clients?
2. Can the Boundaries in Practice (BIP) scale be modified to reflect the domain of peers’ use of lived experience in a way that has both content and construct validity, and reliability?
As this study is a mixed methods study including a qualitative phase followed by a quantitative phase, each phase has its own research questions which are considered subsets of the primary research questions. The data gathered to answer the qualitative questions will be used to inform the survey's creation.
Qualitative questions
1. What themes and/or scenarios related to the disclosure of lived experiences emerge that could be utilized in the survey’s creation? (question generation)
2. How can these themes be sorted into categories of vignettes (traits) for the creation of the survey vignettes?
3. Did additional themes emerge that warrant additional survey questions and/or further research beyond the scope of this study?
4. Do the questions presented in the first focus group, which are based on a review of existing literature, elicit responses that contribute to a fuller understanding of peers’ use of lived experience and the peers’ use of professional boundaries?
5. Based on the second focus group responses, do the created survey questions have content validity? If not, how can the questions be changed to improve content validity?
Quantitative research questions :
1. To what extent do peers feel comfortable using lived experience
2. To what extent do peers feel knowledgeable in how to use lived experience?
3. To what extent did peers feel experienced in using their lived experience?
4. Did the type of scenario affect the peers’ comfort, knowledge, and/or experience? What domain of the presented scenarios seemed to be significant (knowledge, comfort, or experience) related to the peers’choice to share their lived experience?
5. Does the created survey show construct validity and reliability?
Research questions related to mixed methods
1. Do the created survey questions reflect the actual lived experiences of peers within the vignettes created from thematic analysis of the first focus group?
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2. Beyond establishing content validity of the survey, what does the coded narrative from the focus groups combined with the data from the collected surveys tell us about peer use of lived experience and how it can (or cannot) be measured?
The qualitative and quantitative research questions are considered subsets of the primary research questions. Answering the research questions from the qualitative phase informed the creation of the quantitative survey. The results of the quantitative survey were analyzed through descriptive statistical analysis. Data from both qualitative and quantitative portions were considered together to answer the primary research questions.
Rationale for Mixed Methods Research Design
Creswell (2014a) defines mixed methods as “an approach to an inquiry involving collecting both quantitative and qualitative data, integrating the two forms of data, and using distinct designs that may involve philosophical assumptions and theoretical frameworks” (p. 4). The epistemology of mixed methods is informed by a belief in the truths gained through both the positivism of quantitative and the interpretivism/constructivism of qualitative research methods. A mixed-method design is one that will “use a method and philosophy that attempt to fit together the insights provided by qualitative and quantitative research into a workable solution” (Johnson & Onwuegbuzie, 2004). As an alternative to the philosophies of purely quantitative or qualitative designs, mixed methods researchers often adopt a pragmatic worldview to inform epistemology and methodology. A pragmatic stance leads researchers away from a focus on methods and instead, “… researchers emphasize the research problem and use all approaches available to understand the problem” (Creswell, 2014b, p. 10). In the case of mixed methods, a researcher does not limit themselves to a quantitative or qualitative research design but, instead, uses whichever design, or combination of designs, would best address the research question. In this
Dissertation study, the research question is most fully informed by a combination of both qualitative and quantitative designs.
Rationale for Exploratory Sequential Mixed Methods Design
This study uses a specific type of mixed methods design known as an exploratory sequential mixed methods design. In this design, the research begins with an exploration of qualitative data and then uses those findings in the second, quantitative, phase of research (Creswell, 2014b, p. 225). The intent of this strategy is to “develop better measurements with specific samples of populations” (p. 225). In this case, the qualitative data from the focus group was used to modify a scale administered to a larger sample of the peer population. The two constructs that create this methodology are that of exploratory and sequential.
To consider the meaning of exploratory, Creswell and Clark (2011) describe two different ways of combining qualitative and quantitative data: explanatory and exploratory. In an explanatory study, qualitative data is used to explain the data gained from the quantitative part of the study. In the exploratory type, the qualitative data is used to explore the problem and to inform the quantitative portion of the study. This study is exploratory as the qualitative focus group explored the topics of lived experience and boundaries with peers to inform the quantitative survey.
The second construct of the study’s design is the idea of sequential. Mixed method designs use qualitative and quantitative data either concurrently or sequential. Studies with concurrent data collection gather qualitative and quantitative data at the same time. In sequential studies, the phases of data collection occur separately and one after the other. This study was sequential with qualitative occurring first followed by quantitative.
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Morse (1991) developed mixed-methods notation as a way to convey mixed-methods procedure. Using Morse’s shorthand, this study is qual→ QUAN. The shorthand indicates that the qualitative portion of the study will occur first and then inform the quantitative portion of the study. The arrow represents the sequential nature of the design. Capitalization of QUAN indicates an emphasis on the quantitative data. (Creswell, 2014b, p. 228–229). In this study, quantitative data is emphasized because the electronic survey is the culmination and focus of data analysis.
A common rationale for mixed methods is that it provides a fuller understanding of a research problem than either qualitative or quantitative alone (Creswell, 2014a, p. 4). In this study, the collection of qualitative data informed the creation of the instrument used to collect the quantitative data. This study incorporates a transformative lens through the inclusion of the marginalized population (peers) being studied. Studies with a transformative lens ask the question, “Did the participants initiate the research, and/or were they actively engaged in the project?” (Creswell, 2014a, p. 73). In this study, a mixed-methods design allows for fuller inclusion, or active engagement, of peers than either qualitative or quantitative designs alone. The primary rationale for using mixed methods in this study is to utilize a qualitative method to inform the creation of a quantitative survey. Through the mixed-method design, peers were actively engaged in the study's development and in providing content validity through target population evaluation. In addition to the survey's creation, themes that emerged from the qualitative data provided a fuller understanding beyond creating questions for the quantitative survey.
Rationale for Creating a Modified Boundaries in Practice Scale
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There is currently no validated data collection tool that addresses the primary research questions. Most literature on professional boundaries, “consists of discipline-specific; single case studies; opinion pieces; or discussion papers that are descriptive or prescriptive” (Kendall et al., 2016, p. 510). The lack of empirical studies in this area is likely due to, “the limited availability of validated instruments designed to measure boundaries in practice, that is how dilemmas manifest and how professionals view them” (Kendall et al., 2011, p. 510). The majority of instruments focus on sexual boundary breaches exclusively. In a review of existing tools, the following scales were reviewed: the Sexual Boundary Violation Index, the Boundary Violations Propensity Questionnaire, the Marlow-Crown Social Desirability Scale, the Working Alliance Inventory, and the Boundaries in Practice (BIP) scale.
The Sexual Boundary Violation Index (BVI) is a measure of boundaries but is designed to measure only a health care professional’s risk, or propensity, towards the violation of specifically sexual boundaries (Swiggart et al., 2008). The Boundary Violations Propensity
Questionnaire is similar to the BVI in that it measures the propensity for the violation, although it is not focused completely on sexual boundary violation. These scales are both designed for the prediction and prevention of boundary violation. They are not designed to explore variance in boundaries that can exist within an ethical practice, nor do they explore the experience of operating within a set of boundaries that is more permeable and loosely defined. The MarlowCrown Social Desirability Scale is useful in looking at professional boundaries as it measures an individual’s need for approval. While this would be a useful tool to explore underlying motivations within a peer/consumer dyad, it does not explore the research questions of this study.
The Working Alliance Inventory (WAI) came close to addressing this study’s research questions. Designed to explore alliances or, “collaborative relationship between helper and the
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client,” this study would be helpful in creating more depth of understanding about the peer/consumer frame and relationships. However, the WAI is designed to be administered to both a helping professional and their client, which is beyond the scope of this study. For future study, the WAI would be helpful to further explore the peer/consumer alliance and even to compare those results with the alliances between therapists and clients.
Finally, a review of the BIP showed that it comes the closest to exploring this study’s research questions. The BIP was designed to “explore practitioner knowledge of boundary dilemmas, practitioner comfort and experience in dealing with such dilemmas, and the ethical decision making to help resolve them” (Kendall et al., 2011, p. 522). It uses vignettes to assess these factors which is a technique considered, “relevant to clinical settings and the applied nature of the professional boundary domains” (Taylor, 2005, as cited in Kendall et al., 2011, p. 522).
Taylor (2005), describes this technique as presenting “true-to-life” vignettes so the survey taker can make a judgment about a scenario that is familiar to them and their work. In the BIP 10 vignettes are presented that are designed to describe common boundary decisions. Each respondent is asked to rate their Knowledge, Comfort, and Experience for each vignette on a 4point Likert scale. An example of a vignette from the BIP is, “A mother of a client is very distressed. She is a nice woman and you really like her. She asks you to have dinner with her one night” (Fronek & Kendall, 2016). Following the vignette, one or two possible actions are presented and the respondent is asked to rate how ethical they feel the particular action to be, again using a 4-point Likert scale. An example of an action for the vignette quoted above is, “She needs some cheering up so you invite her home for dinner” (Fronek & Kendall, 2016). The results in Table 2 outline the subscales of the BIP (Fronek & Kendall, 2016, p. 3):
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Table 2
The Knowledge, Comfort, Experience, and Ethical Decision-Making subscales of the Boundaries in Practice Scale
Note: Reprinted with permission
This study used the structure and format of the BIP scale. However, as the aim of using vignettes is to provide familiar scenarios, the BIP was modified to make it more relevant to peers. On April 26, 2018, permission to modify the scale was obtained from Patricia Froneck, one of the developers of the BIP scale, who stated in her email that the scale has been adapted to numerous settings. In order to use meaningful scenarios that reflect actual experiences of peers, the first focus group of the qualitative phase was used to identify themes and narratives to design scenarios and categories of scenarios. The second focus group was used to elicit feedback from the peers regarding the designed vignettes to establish content validity.
The newly created, modified Boundaries in Practice scale can be used in many ways, once fully validated. It can be used to measure the outcomes of training on boundaries and use of lived experience, as a pre-and-post measurement. The scale could also be used to assess how different types of supervisory styles influence peer’s comfort, experience, knowledge, and boundary decision making. The use of this scale could also identify types of scenarios that may
Stevens, Dissertation be particularly challenging so ongoing training and/or supervisory consultations can address these types of situations. It can also be used as a form of self-assessment, for peers to more fully understand their levels of comfort with decisions regarding boundaries and the sharing of lived experiences. Finally, this scale can be used as a component of the exploration of what boundaries look like for the work of peer support workers.
Research Sample
This study used multistage purposeful sampling to recruit participants. Multiple stages were needed as the initial sample for the focus group was too small to fulfill the sample size for the quantitative analysis. Purposeful sampling involves choosing individuals based on their connection and experience with the problem being studied (Creswell & Clark, 2011). The inclusion criteria for the qualitative phase of this study include: 1) participants must be employed as behavioral health or substance use disorder peers in Missouri, either full-time or part-time 2) the peers must have at least two years of experience working as a peer 3) participants must be 18 years old or older 4) participants must have Missouri Peer Specialist certification. The sample size for the focus groups was between five to eight individuals. The sample was recruited from working peers in the state of Missouri. The participants in focus group were the same participants in focus group two. For the quantitative portion of the study, inclusion criteria was: 1) participants must be employed as peers in Missouri, either full-time or part-time 2) participants must be 18 years old or older 3) participants must have Missouri Peer Specialist certification. The criteria that a participant must have worked for at least two years as a peer has been removed. For the focus group, the peers would benefit from at least two years of experience to answer questions in a way that would inform the creation of the survey that is applicable to most peers. A two-year level of experience is not necessary to complete the quantitative survey.
One of the demographic questions in the survey will capture how long each participant has worked as a peer so it will be possible to conduct statistical tests that consider how the length of time employed affects survey answers. The target sample size for the quantitative step of the study is 35-50 participants.
Research Design and Data Collection
Once approved by the Institutional Review Board and proposal hearing, the researcher proceeded with the following steps:
1. In order to recruit focus group participants, the researcher sent an email invitation to community mental health practitioners, administrators, peer organizations, peer leaders, and trainers in the state of Missouri. The email included the name and contact info for the researcher, the purpose of the study, inclusion criteria for participants, and the time commitment required of participants. The email requested that the recipient forward the email to peers who meet the criteria for focus group participants. Peers who qualified for inclusion in the focus groups were compensated with a $25 Amazon gift card.
2. The researcher contacted potential participants either via email or phone and asked them the following questions:
a. Are you an employed peer support specialist in Missouri?
b. How long have you worked as a peer support specialist?
c. Are you 18 years old or older?
d. Have you received your Missouri Peer Specialist certification? If all answers above indicated they were an eligible focus group participant, then the following questions were asked:
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e. Would you be able to participate in an online focus group requiring Internet access?
f. There will be two, online focus group sessions in this study. Would you be able and willing to participate in both focus groups? Do you have the needed equipment and are you willing to be on both audio and video during the focus groups?
3. Recruitment ended when the researcher had 5-8 participants for the focus group.
4. The Researcher sent focus group participants a follow-up email with the date, time, and connection information for both focus groups. The email restated the purpose of the study and the researcher’s contact information.
5. The Researcher conducted Focus Group 1, which included gathering a consent form and a demographic form from each participant. The consent form included consent to be recorded, via an audio recording, during the focus group. The demographic form asked:
● Name:
● Gender:
● Age:
● Years of experience as a peer:
● Year of Certification as a Missouri Peer Specialist: The researcher used the Focus Group Guide found in Appendix B to conduct this focus group.
6. Immediately following the focus group session, the researcher took field notes regarding her impressions, paying particular attention to any nonverbal communication present during the session.
7. The researcher transcribed the focus group session and conducted a close, line-by-line reading of transcription while taking notes on themes.
8. Identified themes were used to modify the BIP survey to develop scenarios that reflect true-to-life scenarios of peers using lived experience with consumers. Themes were also used to create additional questions, as needed, to assist in determining peers’ perception of the use of lived experience and the support they receive or are lacking in this area.
9. The survey questions were entered into an online survey, using SurveyMonkey. The survey also included an introduction screen that introduced the researcher, the purpose of the research, and contained a confidentiality statement.
10. The researcher developed the question protocol for the second focus group aimed to test the content validity of the created survey questions
11. The researcher conducted a second focus group via an online platform. During this hourlong focus group, the researcher reviewed each question on the created survey with the peers. Feedback was sought on each question and the overall format of the survey.
12. The researcher revised the lived experience questions based on the feedback from the second focus group.
13. The link to the finalized SurveyMonkey survey was emailed to peers and agencies who employ peers with the request that they complete the survey and forward the link to other peers.
14. The researcher uploaded data from completed surveys into SPSS to run analyses on descriptive statistics and to determine the reliability and validity of the instrument. Plan for Data Analysis
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A defining trait of mixed-method studies is the integration of qualitative and quantitative data. In this study, the qualitative and quantitative data, both in collection and analysis, are fully integrated as the qualitative collection and analysis are used to create the survey for the quantitative phase. Additionally, in the final interpretation of data, the researcher again integrated these phases by including quotes, themes, and notes from the qualitative data to provide a rich interpretation of the statistical data.
Data analysis in this study occured in two distinct phases: analysis of qualitative data from the focus group and analysis of quantitative data from an electronic survey. This section will describe both the qualitative and quantitative phases.
Qualitative Data Analysis
For the first phase, the researcher used thematic analysis to analyze the qualitative data from the focus group. Braun and Clarke (2006) define thematic analysis as, “a method for identifying, analyzing, and reporting patterns (themes) within data.” Some quantitative researchers argue that thematic analysis is not truly a separate method but a technique used by researchers within whichever method of qualitative analysis they are using. However, over the past decade, the argument has been made that thematic analysis should be considered a standalone method that can be used across epistemologies and types of research questions (Braun & Clarke, 2006; King, 2004; Nowell et al., 2017; Thorne, 2000). The flexibility of thematic analysis lends itself particularly well to a mixed methods study and, specifically, to a study where that analysis is used in the creation of a quantitative survey.
It is important in thematic analysis to be grounded in the purpose of the thematic analysis (Braun & Clarke, 2006). For this study, themes were identified to use the data from the focus group to provide a thematic description of that data which informed the creation of survey
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questions for the quantitative survey. Themes were coded in two main categories of code: (1) code regarding content/theme creation and (2) code regarding data specific to language and form. The researcher created the second code category from data that informed the best language and/or form for the survey questions to assist with validity in the electronic survey. For example, if the feedback was given that a certain word was confusing, that data would be part of this category. The transcribed second focus group session and researcher notes were coded for this category. This data was coded from questions that explicitly ask participants for feedback on language and wording but also implicitly from their verbal and non-verbal responses to posed questions. Both categories of code were coded with the primary research questions in mind. Identified themes that did not relate to the primary research questions were coded as possible subjects for future research.
Table 1 outlines the phases of thematic analysis and the steps the researcher took during each phase. It is also important to note that, while thematic analysis is described here as a linear process, “it is actually an iterative and reflective process that develops over time and involves a constant back and forward between phases (Nowell et al., 2017).” This table is adapted from the phases identified by Braun and Clarke (2006).
Table 3. Thematic Analysis Process for First Focus Group
Phases of Thematic Analysis
Phase 1: Familiarizing yourself with your data
Researcher Analysis Activities
The researcher:
● Transcription: The first focus group was transcribed by the researcher to allow for full immersion and reflection on recorded data.
● Listening and reading: The researcher listened to the recordings and read the transcripts while taking notes of insights, emerging themes, and
Phase 2: Generating initial codes and sorting data
Phase 3: Searching for and reviewing themes
Phase 4: Defining and naming themes
Phase 5: Producing the report
researcher reflections. Notes were taken during each listening/reading.
The researcher:
● Utilized notes taken during reading and listening to identify patterns and/or themes to develop a list of codes, including two categories of code
o Category One: Codes for data identifying themes, scenarios, and patterns within the narrative that relates to using lived experience and/or boundaries
o Category Two: Codes for data that provides feedback regarding language and/or form of questions
● Conducted an additional close reading of the transcript while coding data into the specific codes/themes identified.
● Sorted and organized all data using a Word document
The researcher:
● Reviewed codes to look for themes and patterns that emerged from the data
● Defined any sub-codes or themes that developed within any coded category
● Identified connections or patterns between the different coded categories
The researcher:
● Clearly defined the themes and categories of scenarios and how each theme related to the research questions
● Determined which themes should be used to write survey question scenarios
The researcher:
● Used the themes and patterns identified to write survey questions for the electronic survey
● Entered the survey into Survey Monkey
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Phase 6: Member checking
The researcher:
● Conducted a second, online focus group to walk through the electronic survey with original focus group participants
● Revised survey questions and/or format based on feedback from the second focus group
As the second focus group was for member checking and not gathering additional data, the same level of data analysis was not used for the second focus group. The researcher reviewed her notes from the second focus group and listened to the audio recording to verify that the group’s feedback was correctly captured. Any changes to the survey questions made based on this feedback were also clearly documented. The phase of qualitative analysis ended once the Survey Monkey survey was finalized, and the study moved on to the quantitative data collection and then analysis processes.
Quantitative Data Analysis
All data gathered through the online survey in SurveyMonkey was imported into Statistical Package for the Social Sciences (SPSS) software. The demographic data and any other questions asked in addition to the modified-BIP were analyzed using descriptive statistics. The data was also analyzed to examine the validity and reliability of the modified scale. The first step in validity testing was using the second focus group as a subject matter expert to give feedback on content validity. The second step was using SPSS software to run factor analysis tests to test for construct validity. In order to test for reliability, SPSS software was used to run Cronbach’s Alpha test.
Mixed Methods Data Analysis
Once the quantitative data was analyzed through SPSS testing, the data as a whole was considered. The researcher revisited the coded focus groups and identified qualitative information, in form of quotes or theme identification, that were used to enrich and possibly explain the quantitative findings. Braiding the qualitative and quantitative data into the results provided greater depth of understanding and helped identify implications and recommendations.
Ethical Considerations
One of the risks of focus groups was over disclosure by participants. This risk was somewhat mitigated as the focus group questions were regarding professional technique and did not ask directly about participants’ personal experiences. However, there remained the chance that participants could feel negatively affected or judged by the other peers in the focus group based on their responses. Additionally, as peers’ professional work and this study is inherently connected to their personal experiences, participants did discuss personal, lived experiences with the group. The researcher conducted the focus groups with sensitivity to the fact that the discussion is in the presence of a group of people. The researcher fostered an environment of respect, inclusion, and acceptance in the focus groups through her facilitation of the question and response process.
Prior to the beginning of each focus group, the researcher explained confidentiality, particularly how participants’ identities will be protected. Steps to protect identity included using a pseudonym when referencing specific participants in any written material and keeping identifying information such as names and contact information in a locked file. Participants also signed a confidentiality statement agreeing that they will keep any discussion about clients in the focus group confidential. In addition, only pseudonyms were used to refer to any clients who were discussed in the focus group.
Issues of Trustworthiness
The second focus group was a step designed to increase trustworthiness. This focus group addressed if the themes/scenarios selected to create survey questions accurately reflected the discussion from the focus group. This study was designed to enhance trustworthiness and maximize peer involvement in keeping with its adherence to the nothing about us without us philosophy. Additionally, the steps outlined in the quantitative data analysis were all designed to conduct a trustworthy, thematic analysis. These steps were developed to meet the trustworthiness criteria of credibility, transferability, dependability, and confirmability (Nowell et al., 2016).
Credibility considers the relationship between the participants’ views and the researcher's representation of these views, which will be addressed through multiple readings of the transcript and the second focus group. Transferability considers if the results can be generalizable and the researcher’s responsibility to meet this criterion is to provide, “thick descriptions so that those seeking to transfer the findings … can judge transferability” (Nowell et al., 2017). The researcher addressed the transferability criteria in Phase 4 of the quantitative analysis by providing thorough descriptions of the themes identified. Dependability refers to the researcher’s assurance to the reader that the research is logical, traceable, and clearly documented (Nowell et al., 2017); this was accomplished through the clear outline of data analysis steps and thorough documentation through notes. Finally, confirmability establishes that the interpretation is derived from the data (Nowell et al., 2017). This was accomplished through taking careful notes of the decisions the researcher made during the interpretation process, including providing a clear rationale for those decisions.
Limitations and Delimitations
One of the limitations of this study was that there is not an existing, validated tool to measure the use of lived experience. This necessitated the modification of an existing scale. The focus group method used to develop the survey, while trustworthy, will use a small number of participants. In an expanded, larger study it would be valuable to conduct multiple focus groups with geographic diversity. Also, in the quantitative phase, there were not enough respondents to show full reliability; this study was completed in the pre-testing of a modified scale.
This study was also not designed to consider comparisons between boundaries by licensed mental health providers and peers. While the data collected will create a richer understanding of how peers use lived experience and consider boundaries, it does not show how the experience of peers is the same or different than the experience of clinicians, except through what is reflected in the literature. Comparison data is beyond the scope of this study but would be valuable data for future exploration.
Participants in this study will only be peers in the mental health, or psychiatric, and substance use disorder realm of services. Peers are also utilized in services provided to individuals with developmental and/or intellectual disabilities. This category of peers is beyond the scope of this study. Additionally, the career field of family support specialists is also excluded from this study. Similar to peers, family support specialists are hired based on their lived experience of having a family member with a severe mental illness. They offer support to other family members or caregivers. Future studies with a larger scope could include these excluded peer groups and family support specialists to create a more complete understanding of the entire peer support field.
The Role and Background of the Researcher
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I served on the executive team of Missouri’s Department of Mental Health (DMH) in the role of Chief of Children’s Community Operations in the western region of the state. In this capacity, I worked with state initiatives to enhance and develop services for children and youth through the state, federal, and grant programs. My primary role was to oversee DMH-funded services for youth through contracted community mental health centers and residential providers. I worked closely with other child-serving systems in order to develop a continuum of care to meet the needs of this vulnerable population. My region of responsibility covered 37 counties which include both urban and rural populations. In my role with DMH, I worked frequently with community mental health centers to expand the use of peers in the array of services available to individuals in Missouri. I also worked with a system of care expansion grant that required a dedicated youth peer specialist at each participating community mental health center.
Chapter Four: Results
Introduction
This chapter consists of two primary sections: thematic analysis of qualitative results and statistical analysis of quantitative results. Discussion of mixed methods results will be incorporated into both these sections as the research phases inform each other
Qualitative Results: Thematic Analysis
During the qualitative phase of research, two focus groups were conducted with peer support specialists. Focus group 1 was a guided discussion about peers’ disclosure of lived experiences in their professional work. Through thematic analysis of focus group 1’s transcript and audio recording, themes were identified to develop scenarios common to peers’ experiences. These scenarios were then used to adapt an existing scale, the Boundaries in Practice Scale (BIP) The BIP is a scenario-based scale used to measure boundaries in clinical settings. The peer scenarios developed through focus group 1 replaced the BIP’s scenarios to design a scale with the same format as the BIP but with scenarios specific to the experiences of peers. This adapted scale, the Peer Lived Experiences Survey (PLE), was used in the quantitative phase of research. The second focus, focus group 2, verified the content validity of the identified themes and the scenarios described in the draft PLE Focus group 2 also sought confirmation that the language used in the survey is appropriate for the study’s identified population, peer support specialists.
Description of Study Participants
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Focus group 1 consisted of six people employed as Certified Peer Support Specialists in Missouri. All six were over 18 and employed as peers for over two years. Two of the focus group 1 peers worked in behavioral health (BH) settings; two worked in substance use disorder (SUD) settings; and two in both BH and SUD. All focus group 1 peers worked with adult clients. Table 4 shows additional demographic descriptors of focus group 1 participants:
Table 4. Demographic Information for focus group 1
Summary of Thematic Analysis Process
As outlined in Chapter 3, the thematic analysis of the qualitative focus groups involved a six-step process. These steps included:
1. Familiarization of the data through immersion in and reflection upon both the written transcription and recorded session;
2. Generation of initial codes that identify themes, scenarios, and patterns related to the use of lived experiences;
3. Searching for and reviewing themes for patterns, sub-codes, and connections between the coded categories;
4. Clearly define the themes and determine how to incorporate them into the scenarios/vignettes created for the Peer Lived Experiences Survey;
5. Use identified themes to create the Peer Lived Experiences Survey;
6. Conduct focus group 2 to show the focus group the newly developed survey and revise the survey based on their feedback.
Four themes were identified and defined through immersion and analysis of focus group 1. Focus group 2 was convened to check for validity, ensuring that the themes identified accurately reflected the ideas and experiences communicated during focus group 1. Based on focus group 2 feedback, two of the scenarios were changed and some of the language used on the survey was revised. Members of focus group 2 were the same as focus group 1 and so were able to validate that their ideas were accurately captured. The changes were made based on their suggestions for clarity and to use language common to peers. In addition to reviewing the survey with focus group 2, the definitions of identified themes were also validated.
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The thematic analysis process was iterative and did not follow the six-step analysis process in a linear or sequential manner. As new themes were identified, additional transcript readings were necessary to find all the expressions of those themes. Additionally, phases of the analysis were repeated as the definitions of the themes developed and became more narrowly or broadly defined.
Identified Themes
The four major themes identified are Being Triggered, Instilling Hope, Connection, and Disclosure Decisions. The major themes were selected based on their frequency within the discussion, being expressed by several group members, and by their connection to the research questions. Emerging themes were considered through the lens of the research questions: Does this theme contribute to answering a research question? This section will define each identified theme. In developing the definitions, consideration was made of the totality of the ideas that emerged from the focus group discussion. However, key quotes are used to provide depth, richness, and context to the definitions.
Being Triggered
“I’m still cleaning up the wreckage of my past and ... whew, man, this is tough.”
Being Triggered is defined as experiencing affective states connected to past traumas after exposure to certain situations, settings, or self-disclosure decisions. This theme was identified because of the frequency of its occurrence during focus group 1. Each member of the group described more than one instance when their work with clients elicited affective states connected to their past traumas. The feelings participants described; shame, vulnerability, discomfort, and feeling unsafe; could each be a separate theme and/or sub-theme. However,
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during coding, the interconnectedness of these emotional experiences became apparent. The presence of vulnerability, for example, was intertwined with feeling unsafe. Descriptions of shame were braided with experiencing discomfort, both physical and psychic. These affective states were coded together under the Being Triggered theme because parsing them out as separate themes went beyond the scope of this thematic analysis.
The phrase Being Triggered represents this theme as it is the language used most frequently in the focus groups. Focus group members consistently used the word trigger when telling stories that incorporated any of these affective states. When specifically asked about the experiences of shame, vulnerability, discomfort, and feeling unsafe; a participant stated, “Oh, we call all that being triggered.” A different participant added, “I know when telling my story or being around something triggers me ... I feel bad or just ... like jittery or not okay.” The other peers participating agreed with “being triggered” as the correct way to describe any of those emotions. Being Triggered presented differently during each occurrence as it is a nuanced, subjective experience. Group participants found that, while they could predict some triggering situations, most of their work with clients was done not knowing when or what would cause Being Triggered. As described by one participant “… Sometimes for me it can be triggering.
You know … I’m still cleaning up the wreckage of my past and, honestly, some days it’s like Wow! I feel … you know … I feel like I did what I’m supposed to do. And other days it’s like whew, man. This is tough. And I’ll have to go process with my supervisor, you know, orhonestly, cry in my car sometimes.” While there is variability within the experience, this statement by a focus group participant captures the essence of this theme:
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“I honestly didn’t expect to be as triggered as I was the first time, because you know, I felt pretty healed. I had done years of therapy and twelve-step groups, and all sorts of things to like, you know, make it not still hurt. I was really, really shocked the first time I shared with a client. She was discussing some sexual abuse, and I have been through that myself and kinda, you know, and I talked to her about my story and, like, when I was done I was like, ‘Oh, my God, I’m not okay with this.’ You know, I’ve moved through it for the last six years, but I’m not okay with it now.”
Instilling Hope.
“I know they can do recovery. I know they can because I did.”
Instilling Hope is defined as peers using lived experiences to foster within their clients the belief that their situations can improve through recovery. This theme was identified due to its prevalence during coding and because it was expressed by every member of the focus group.
Peers demonstrate hope by frequently discussing their trust in the recovery process. Their trust is grounded in their own recovery experiences. At its essence, this theme goes beyond modeling hope. Peers actively hold hope for their clients while empowering the clients to be their own carriers of hope.
While no recovery process is identical, there are commonalities among the experiences of recovery. Peers describe a process where they identify with their clients by seeing themselves in the clients’ various stages of recovery. Likewise, peers encourage their clients to see their potential selves mirrored in the peers’ ongoing recovery processes. As described by one peer participant:
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“I think a lot of it is just them knowing that there’s something besides their disability out there and that they can actually get a better life. It helps them out a lot, because when I was in my recovery, I never thought that I would be in a job like this. In my wildest dreams I never would have thought so. Just showing them that there is something beyond what they think. I think that is a lot of it. Just starting that spark.”
One of the peers described using her own experience of incarceration to instill hope in her client who had just been released from prison, “Really, when I talk about overcoming incarceration, you know, because we get a lot of people who are even multiple time felons … and I’m like, ‘Look. Here I am. I have a job I never knew I deserved. I was able to do these things. You don’t have to be defined by your criminal record … let me walk through this with you. Let me love you through this and show you how I did it.’” Instilling Hope is an effective tool of recovery because of the common shared experience of recovery. At its essence, it is the belief that the client can improve their life through recovery, just as the peer did.
Connection.
“I tell my clients that I take my chronic suicidality with me to Walmart. You can take your anxiety to the grocery store. Let’s do it together. Let’s go shop. I’ll show you how to do it. We can breathe together in the cup aisle.”
Individuals experiencing symptomatic mental illness and/or addiction frequently describe the experience of living with their disease as isolating. The peers in the focus group offer a connection to another person built on mutual recognition and understanding. They discussed the need for connection with others who understand recovery, “Recovery feels lonely and when I first knew I needed help, I didn’t feel strong enough to do anything alone. If I hadn’t met other
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people who’d walked this path, I wouldn’t have made it.” Peers join their clients in their recovery, as an individual at a different place along the same process. To continue the metaphor used by the focus group participant, they are further down the same path. While the peer to client connection is a professional relationship, it is rooted on the mutual experience of a life in recovery due to mental illness and/or additions. The idea of connection through experience not only captures the essence of the peer/client dyad; it is considered a tool of recovery. It was identified as a major theme because it was an idea present within each story shared by a peer.
One peer described it as, “I tell my clients that I take my chronic suicidality with me to Walmart. You can take your anxiety to the grocery store. Let’s do it together. Let’s go shop. I’ll show you how to do it. We can breathe together in the cup aisle.” In this poignant example, the client does not have to face the realities of working on recovery while in chronic suicidality alone. They work on their recovery with someone who shares that experience. One participant stated, “When you think no one else gets it. That’s the worst. That is just the darkest part.” The connection provided by the peer relationship provides an answer to that isolating darkness.
Disclosure Decisions.
“I always ask myself, am I telling them this for me or for them? And that’s how I decided. Am I doing this because I need to see my therapist? Or am I doing this because they can learn from it, or they can take something away, or I can give them hope. And that’s how I decide.”
The theme Disclosure Decisions is defined as the process peers use and the factors they consider when deciding when and how they will use their lived experience with clients. Three frequently appearing codes were combined to create this theme: (1) When to share lived
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Focus group 1 made it clear that deciding when and how to share lived experience is made in one of two ways. The first way is making the decision to share in a deliberative process, possibly even after discussion with their supervisor or the treatment team. The second way is choosing to share with the client based on an intrinsic knowing that sharing will be beneficial. This is often done in the moment as it occurs organically during their session with the client. These two processes seem to be contrary to each other; however, both occur within the peer context of significant consideration, discussion, and training about sharing lived experiences. The peers in the focus group felt that, even the times they shared without prior deliberation, they had a foundation of learned skills and information that informed that decision. One peer in the group described sharing lived experiences as, “something we learn but also just something you just understand, cause you’ve been there and have an idea of what they need. Like I can feel when someone needs to hear where I’ve been so they can trust me.”
The decision to disclose lived experiences was based on consideration of the potential benefit to the client and the peer’s self-protection. The focus group discussed being selective in the parts of their story that they share. Peers expressed that the times when they regretted sharing came from sharing too much of their experiences. One poignantly described this is, “There are some things that are too raw. I don’t have the scar tissue built up enough to share it safely.”
Issues identified as frequently withheld from clients included sexual abuse, previous struggles with child welfare services, and abuse within their family of origins. Another elaborated, “I have inner circle, middle circle, and outer circle boundaries. For me to get into inner circle boundaries
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with a client, I will need to have that much trust … But those rare clients, maybe like 3 out of 26 in my case load, are ready to hear that inner circle. It feels safe.” One peer described their decision-making process as, “... Am I doing this because they can learn from it, or they can take something away, or I can give them hope?” Peers in the group discussed exercising caution that they were not sharing out of their own need for therapeutic processing, “I always ask myself, am I telling them this for me or for them? And that’s how I decided. Am I doing this because I need to see my therapist?”
Participants described sharing lived experience as both the most meaningful and most challenging aspect of their work with clients. Focus group participants felt that using their lived experiences is what makes their work personally fulfilling, even despite other challenges of working as a Peer, “that’s what makes the job worth doing. That’s why I work for $16 an hour.”
This theme also tied into the theme of Being Triggered. In situations where Peers felt triggered and/or experienced regret from sharing aspects of their past, they discuss not consistently understanding what will be safe to share. A participant expressed the idea that, “sometimes you just don’t know until afterwards if you crossed a line and shared too much – you don’t know until you’ve done it and just feel too exposed.”
Scenario Development for the PLE Survey
The PLE Survey was developed for the quantitative portion of the study. In the PLE Survey, a simple scenario is presented to participants who rate their levels of Training, Use of Supervision, Knowledge, Discomfort, and Experience within the context of each scenario. Participants are then presented with two different decisions and rate which decision they would be most likely to make within that scenario. The survey is more effective if the presented
Stevens, Dissertation scenarios resonate with peer participants; therefore, through the focus group 1 coding, commonalities among the peers’ experiences were coded and used in the scenario development.
As peers work in different settings and with different populations, their experiences are not universal. However, while their stories were nuanced, it was possible to see commonalities and to interpret themes connecting each of the shared experiences. Each story told by peers within focus group 1 was coded for commonalities. Then thematic analysis was used to determine the essence of the experience, or the core affective state peers intended to relay by sharing each story For example, the focus group was discussing some of their non-traditional locations for client meetings such as cars, parks, fast food restaurants, etc. To contribute to this topic of non-traditional settings, Peer A told a story about transporting a client in her car. While driving, the peer shared with the client that they, like the client, had spent several years during childhood placed with foster families. The client did not respond with empathy or any awareness that the peer had shared a difficult lived experience during the drive. Peer A expressed that it was difficult to be vulnerable in sharing their past and have it met with what appeared to be indifference. While Peer A shared this story, Peer B was nodding with understanding and stated, “I know how that feels ” Peer B then shared one of their own stories about walking on a trail with a client and sharing with that client their personal struggles in medication management. Learning to advocate and feel listened to by prescribers had been a lengthy and terrifying process for Peer B. Peer B shared this struggle because their client was currently facing the same difficulties. After Peer B talked about their own experiences, the client did not respond and then changed the subject. Peer B expressed that, like Peer A, they felt “thrown for a loop” that their personal experience felt dismissed. These two stories were coded both as client interactions that
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occurred in nontraditional settings and instances of sharing lived experience without an empathetic response. Through analysis of the audio recording, and the nonverbal communications from both peers it was determined that the nontraditional locations of these sessions were not the essence of the stories Even though the topic being discussed was location, the locations were not the reasons the peers shared these experiences or the reason that the first story elicited the second story. Instead, the essence of these stories was identified as the common feeling elicited by the experiences. In both stories, the peers were relating the feeling of experiencing a lack of empathy from their clients in response to the sharing of their personal stories. The frequency of the identified essence was also noted. For example, this feeling of a misaligned, or unempathetic, response was repeated by more than one peer in the focus group, so it was identified as a major theme and developed into a scenario for the PLE survey. That scenario reads, “You notice that when sharing your own experiences of recovery, some clients do not respond with empathy.” The scenario removes other distracting elements to focus only on the essence of both stories. The next section will focus more on how focus group 2 was used to check that the essences of the shared stories were correctly identified.
Focus Group Two Results
The purpose of focus group 2 was to show the participants the scenarios created for the PLE Survey to see if they accurately reflected common peer experiences with clients. First, the peers made language suggestions so that the words selected were those known to peers working in Missouri. For example, in one scenario, the term Multi-Disciplinary Group Meeting was used but, at the suggestion of focus group 2, it was changed to Treatment Team Huddle.
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Focus group 2 was also used to check with the peers that the correct essences were identified and captured within the simplified scenarios. The best example of this process is a scenario in which the essence had been incorrectly captured and, through the focus group 2 discussion, was corrected. During focus group 1, a peer told the story of a client using the bathroom and talking to the peer through the door during their sessions. Every peer participant nodded along with this story as if this was a common experience and several then shared similar experiences. Through analysis of the transcript and recording, the essence was identified as an experience of the client behaving inappropriately, possibly as a means of boundary testing, resulting in the peer facing the decision to continue or end the session. The initial scenario written for the survey described a client who answered the door wearing a robe, causing the peer to feel uncomfortable and to debate if they should continue with the session. The peers in focus group 2 felt that the survey scenario did not accurately capture the essence of the stories they were sharing. As a group, they explained that the bathroom experiences they had shared had more of a feeling of disgust, more of a visceral response that also felt like being disrespected. In contrast, the survey scenario (with the client in a robe) felt more sexual in connotation. As a group, they expressed that in the survey scenario they would feel more unsafe or would feel they needed to take steps to protect themselves from a misinterpretation of relationship. They all agreed that the robe scenario elicited a different feeling from the bathroom stories that they shared in focus group 1. The survey scenario was rewritten to more correctly capture the essence of disgust and disrespect. The new scenario reads, “You are in a client’s home having a great discussion. During your time together the client goes into the bathroom and, while using the bathroom, continues to talk with you through the bathroom door.” This scenario was rewritten
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while in discussion with focus group 2 and the group agreed that it accurately captured the essence of their stories.
Focus group 2 concluded with the participants feeling the scenarios accurately captured the essences of the experiences they shared in focus group 1. Through this second meeting with the focus group, the survey scenarios were refined, both in language and contexts, to generate the PLE survey. The focus groups provided the structure for the co-creation of the PLE Survey in keeping with the underlying value of “nothing about us, without us.”
Quantitative Results: Statistical Analysis
This section will discuss the data collection process, provide a descriptive statistical analysis of data collected from the survey, and consider the validity and reliability of the created survey.
Data Collection
After the content validity process with focus group 2, the Peer Lived Experiences (PLE) Survey was revised and entered into SurveyMonkey. The link to complete the survey was emailed to clinical managers, supervisors, and other administrative officials who work with Peer Support Specialists. These individuals forwarded the link to peers and others who work closely with peers. Finally, the survey was distributed via paper during two meetings of Peer Support Specialists. Time was allowed in each meeting for the peers to complete the survey if they chose to participate. The completed paper surveys were collected and entered manually into SurveyMonkey.
Statistical Analysis
Description of Created Survey
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The PLE Survey consisted of ten scenarios developed from common peer experiences. Each scenario contained seven Likert scale questions. The seven Likert scale questions asked peers to rate their levels of:
1. Training for the scenario,
2. Likelihood of using supervision to handle similar scenarios,
3. Knowledge about such situations,
4. Level of discomfort in handling the scenario,
5. Experience in handling similar scenarios,
6. Likelihood that they would peers would choose to share lived experiences, and
7. Likelihood that peers would choose to not share their lived experience.
Within this statistical analysis, the first five questions will be referred to as the key components/variables and the last two questions as the decision. Appendix C shows the completed survey.
Sample Description.
By the survey's closing, 37 peers, aged 20-59 years old, completed the PLE Survey. All participants were Certified Peer Specialists in Missouri employed either full-time or part-time as a Peer Specialist. Their years of experience working as peers ranged from 1 to over 8 years. The sample reported their highest education level as 24.3% graduated from high school, 54.1% completed some college, 16.2% completed a bachelor's degree, 2.7% completed some graduate level courses, and 2.7% completed a graduate-level degree.
Analysis Process Overview.
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The data was exported from SurveyMonkey into SPSS and analyzed through descriptive statistics including frequency, mean comparisons, standard deviation comparisons, and Pearson’s correlation coefficient. The survey data is assigned a numerical value for each level of narrative response in the Likert scale questions. These assigned values are 1, none; 2, low; 3, medium or moderate; to 4, high. This section presents the statistical analysis in two ways:
1. Descriptive statistics: The minimum/maximum, mean, and standard deviation of each of the five components; training, supervision, knowledge, discomfort, and experience; is compared across all ten scenarios. This data are shown in Tables 4.2 through 4.6.
2. Correlation analysis: Pearson correlation coefficient is used to examine correlation between each of the five components and the decisions peers would make regarding sharing lived experience. These comparisons are shown in Tables 4.7 through 4.16.
Descriptive Statistics.
This section compares the ten scenarios’ minimums, maximums, means, and standard deviations for the variables of training, supervision, knowledge, discomfort, and experience as shown in Tables 4.2 through 4.6. This data provides information regarding the range and variability of answers depending on the circumstances presented in each scenario.
Comparison of Responses to Training.
For all ten scenarios, responses to the question about training showed minimums of 1 and maximums of 4, indicating that the full range of Likert scale answers was utilized in each scenario by the sample. The means across scenarios indicate that training helped a little or training helped in most of the scenarios. Scenario 1 indicated the highest variability (s, or standard deviation = 1.121) and Scenario 9 had the least variability (s = .845).
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Comparison of Responses to Supervision.
In response to the question regarding the use of supervision with each scenario, Scenarios 1, 2, 3, 4, 5, 6, 7, 9 and 10 showed minimums of 1 and maximums of 4. In these scenarios, the sample used the full range of response options for each scenario. However, for scenario 9, the minimum was 2 and the maximum 4, indicated that none of the respondents felt that training did not help at all for the circumstances within that scenario. Means across scenarios range from 2.11 to 3.59, indicating answers closer to the high, moderate range of supervision assisting in some or most of the scenarios. Responses to Scenario 8 showed the least variability among responses (s = .725). Scenario 4 responses had the highest levels of variability (s = 1.177).
Comparison of Responses to Level of Knowledge.
Across the scenarios, respondents utilized the full range of responses (Min = 1, Max = 4) in scenarios 1, 4, 5, 6, 8, and 10. Responses to scenarios 2, 3, 7, and 9 had a smaller range of answers; none of the responses in this area indicated that they had no knowledge pertaining to the scenarios (Min = 2, Max = 4). Scenario 3 showed the least variability (s = .501), and Scenario 6 showed the most variability (s = .947).
Comparison of Responses to Level of Discomfort.
All the responses to the level of discomfort question utilized the full range of responses (Min = 1, Max = 4) with the exceptions of Scenarios 1 and 10. Scenarios 1 and 10 showed a smaller range of responses as none of the respondents indicated high levels of discomfort for these scenarios (Min = 1, Max = 3). Responses to Scenario 9 showed the least variability (s = .608) and responses to Scenario 4 showed the most variability (s = 1.145).
Comparison of Responses to Level of Experience.
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Except for Scenario 1, the responses to all scenarios within the level of experience question used the full range of answers (Min = 1, Max = 4). Scenario 1 answers did not use the full range as none of the respondents indicated no experience for this scenario (Min = 2, Max = 4). Standard deviations indicated a wide range of variability across the experience questions. The scenario with the lowest level of answer variability was Scenario 1 (s = .633). Scenario 4 showed the most experience variability (s = 1.187).
Table 5. Comparison of Training Across Scenarios, (N=37).
Table 7. Comparison of Knowledge Across Scenarios, (N=37).
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Table 8. Comparison of Discomfort Across Scenarios, (N=37)
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Table 9. Comparison of Experience Across Scenarios, (N=37)
Correlation Analysis.
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This section will examine the correlations between variables within each scenario. For each scenario, correlations were analyzed between training and choosing to share lived experiences (LE), supervision and choosing to share LE, rating of knowledge and choosing to share LE, rating of discomfort and choosing to share LE, and rating of experience and choosing to share LE. Pearson Correlation Coefficient (r) is used to measure the strength and the direction of the variable relationships. A positive relationship indicates that as one variable increases the other does as well; negative relationships indicate that as one variable decreases the other does as well. A two-tailed, p-value test (p) indicates the statistical significance of correlation in both positive and negative directions.
Scenario 1 Correlations – Sharing Lived Experiences with Colleagues.
In Scenario 1, the participants’ level of training and supervision both showed positive linear relationships (r=.271) with the choice to share LE with the Treatment Team. However, neither findings were statistically significant as p-value for the correlations were .104 for training and .165 for supervision. Participants knowledge level showed a moderate positive relationship with choosing to share LE (r = .686) that is statistically significant with a high level of confidence. (p < 0.001, two tailed). The rating of discomfort shows a strong negative relationship with the choice to share LE (r = -.706). This negative relationship has a strong statistical significance (p < .001, two tailed). Finally, for Scenario 1, the correlation between experience and making the choice to share LE also has a positive relationship (r = .571) that is statistically significant (p < .001, two tailed).
In summary, this scenario examined how likely peers would be to share their lived experience during a treatment team meeting with their multi-disciplinary colleagues. The
Stevens, Dissertation findings indicate that the more knowledge and experience the peer felt within a situation, the more likely they were to share relevant parts of their lived experiences with their colleagues on the treatment team. However, the strongest finding from this scenario is the role that discomfort plays in deciding to share lived experience with other professionals Feeling comfortable was the biggest indicator that their experience would be shared. The peer’s level of comfort was more influential than even how knowledgeable or experienced they felt with the issue being discussed.
Table 10.
Scenario 1 Correlations with Decision to Share Lived Experience (LE), (N=37)
Scenario 2 Correlations – Sharing Lived Experiences Related to Self Harm.
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In Scenario 2 the variable of sharing LE indicates the participants’ agreement with the decision to show self-harm scars to the client. As in Scenario 1, neither the training nor the supervision variables show a statistically significant correlation to sharing LE (training p = .261 and supervision p = .567). The knowledge variable shows a positive, linear relationship with the decision to share LE (r=.437) that is strongly statistically significant (p = 0.007). Level of discomfort has strong, negative relationship with the decision to share LE (r = -.437) that is also statistically significant (p = .003). Finally, the variable of experience shows a positive relationship with the decision to share LE (r = .456) that is significantly significant with a pvalue of .005.
In summary, this scenario asks peers to decide how they would respond if a client asked them to show the scars that resulted from self harm Interestingly, neither the level of training nor of supervision were a factor in the peer participants’ decisions. Perhaps this is an area not explicitly explored in training or in supervision sessions. In this case the peers’ rating of their knowledge and experience with similar situations were the two most influential indicators on their decision to show scars. The greater the levels of knowledge and experience they felt they had, increased the likelihood of them deciding to share lived experience at that level.
Additionally, level of comfort was also a strong predictor of the decision peers would make; the more comfortable they felt with a scenario like this, the more likely they were to share their lived experience with self harm.
Table 11.
Scenario 2 Correlations with Decision to Share Lived Experience (LE), (N=37)
Training Shares LE
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Scenario 3 Correlations – Sharing Lived Experience of a Childhood Experience.
In Scenario 3, peers decision making is examined in the context of sharing a traumatic childhood experience. The Pearson Correlations showed positive relationships between Sharing LE and Training, Supervision, Knowledge, and Experience. The coefficient correlation between sharing LE and level of discomfort indicated a negative relationship. However, none of these correlations showed statistical significance; therefore, there is no evidence to support claims of true relationships among variables.
In summary, this scenario deals with the peers’ affective response to sharing childhood trauma. It examines how peers would respond if they experienced a strong emotional response after sharing a childhood trauma with a client. Will their affective response affect their decision to share this experience in the future? The data from this scenario did not indicate any significant relationships. There was no direct relationship between supervision, training, experience, comfort, or knowledge with the decision to share the childhood experience again. This area should be explored further with a larger sample size to determine if there is perhaps a statistically significant relationship that was missed due to the small sample size. However, these initial results perhaps indicate that childhood trauma and the experience of sharing it is too variable. The ability to tolerate the affective discomfort of discussing a childhood trauma would be more dependent on the individual attributes of the peers and their own processes of therapeutic recovery.
Table 12.
Scenario 3 Correlations with Decision to Share Lived Experience (LE), (N=37).
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Scenario 4 Correlations – Sharing Lived Experience During a Crisis.
In Scenario 4 the sharing LE variable pertains to choosing to share LE as a de-escalation tool during crisis. While both training and supervision variables show a positive relationship, neither relationship is statistically significant (training p = .158, supervision p = .670). The knowledge variable has a positive relationship with choosing to share LE (r = .374). This correlation is statistically significant (p = .025, two tailed); however, it is significant only at the α = .05 level. This indicates statistical significance at a mild level. Pearson’s coefficient correlation shows that the participants’ level of discomfort has a negative relationship to sharing LE (r = -.417) that is statistically significant (p = .010, two tailed). This correlation is also significant at the α = .05 level, indicating a mild significance. The variable of experience has a positive relationship with sharing LE but is, also, not statistically significant (p = .443, two tailed).
In summary, this scenario examines the peers’ decision to share lived experience with a client who is in crisis. Neither training, the peer’s use of supervision, nor their level of experience were significant indicators of whether they would use their lived experience within this circumstance. The feeling of how knowledgeable they are within the situation did have a statistically significant relationship; the more knowledgeable they felt, the more likely they were to use lived experience. However, it was only minimally significant so likely not a strong indicator.
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Table 13.
Scenario 4 Correlations with Decision to Share Lived Experience (LE), (N=37)
Scenario 5 Correlations – Sharing Lived Experience, Inappropriate Client Behavior.
In Scenario 5, the sharing LE variable is about continuing to work and share with a client through an uncomfortable, possibly inappropriate, situation. In this scenario, the training level did show a mild statistical significance correlation with choosing to continue sharing LE (p = .048, α = .05, two tailed). The Pearson’s Correlation indicates a negative relationship (r = -.327). Supervision also showed a negative relationship with sharing LE; however, it was not found to be statistically significant (p = .158, two tailed). The knowledge variable showed a positive relationship with sharing LE; the indicated relationship between discomfort and sharing LE was negative. However, both the knowledge and discomfort correlations with shared LE did
Stevens, Dissertation not show statistical significance (knowledge p = .195, discomfort p = .137). The participants’ experience rating showed a positive correlation with choosing to share LE (r = .372) that was found to be statistically significant at the α = .05 level (p = .024).
In summary, this scenario considered a peer’s decision to continue sharing lived experience with a client who behaves inappropriately, specifically using the bathroom while talking to the peer. These findings indicate that the more training a peer had, the more likely they are to continue seeing a client under these circumstances. The only other statistically significant finding was that the more experience a peer had the more likely they were to continue sharing lived experiences. These findings could indicate that training and experience served as sufficient internal ballasts, so the peers did not experience the client’s behavior as an injury to self.
Table 14. Scenario 5 Correlations with Decision to Share Lived Experience (LE), (N=37)
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Scenario 6 Correlations – Sharing Lived Experience After Community Encounter with Client.
The Shares LE variable in scenario 6 pertains to sharing lived experience as it relates to personal relationships and encountering clients outside of the professional setting. The variables of training, supervision, and experience all show a positive relation with sharing LE according to Pearson’s Correlation. However, none of these variables has a statistically significant correlation with sharing LE (training p = .170, supervision p = .720, experience p = .798). The variable of knowledge has a positive relationship with sharing LE (r = .327) that is statistically significant (p = .048, two tailed) at the α = .05 level. Finally, the variable discomfort has a negative, linear relationship with sharing LE that is statistically significant (r = -.391, p = .017, two tailed, α = .05).
In summary, this scenario reflected a frequently occurring situation described by the peers in focus group 1. Specifically, in the scenario, the peer runs into a client while they are out in the community with their family. In the survey scenario, the peer had previously shared some experiences related to family relationships with the client, increasing the awkwardness of the encounter. The results indicated that the only variables that influenced the peers’ decisions in this scenario were their level of knowledge and level of discomfort. The more knowledgeable a peer felt, the more likely they were to continue to share lived experiences with the client in this scenario. The more discomfort the peers felt, the less likely they were to share.
Table 15.
Scenario 6 Correlations with Decision to Share Lived Experience (LE), (N=37).
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Scenario 7 Correlations – Lived Experiences When Sharing with Increased Vulnerability.
Scenario 7 examines sharing LE with a client that feels highly personal and difficult to share. The participants’ level of training in this area has a negative, linear relationship with sharing LE; however, this relationship is not statistically significant (p = .377). Pearson correlation indicates a positive relationship between supervision and sharing LE although this is also not a statistically significant correlation. There is a negative, linear relationship between knowledge and sharing LE (r = -.669) that has strong statistical significance at the α = .01 level (p < .001, two tailed). Levels of discomfort and sharing LE have a positive Pearson correlation (r =.625) that is also statistically significant with a high level of confidence, significance is at the α = .01 level (p < .001, two tailed). Finally, experience has a negative, linear relationship with sharing LE (r = -.439) with a strong statistical significance (p = .007 with α = .01, two tailed).
In summary, this scenario examines the peers’ decision making when the experience they are considering sharing is one that is more difficult to share, one that makes them feel more vulnerable. The findings indicate that the more knowledgeable the peers felt about scenarios like these, the less likely they were to choose to share this experience. Additionally, the more discomfort they feel, the less likely they are to choose to share. Finally, the more experienced they feel in similar situations, the less likely they are to share this deeply personal experience with clients. It is interesting to note that in this scenario, the peers are less likely to choose to disclose a lived experience if they have more knowledge and more experience. This could be interpreted to mean a deeper understanding of the risks inherent in sharing personal experiences that could lead to psychic vulnerability.
Table 16.
Scenario 7 Correlations with Decision to Share Lived Experience (LE), (N=37)
Scenario 8 Correlations – Sharing Lived Experience After Feeling Unsafe.
Scenario 8 presented a scenario regarding the decision to share LE after an experience of feeling unsafe with a client. Training showed a negative relationship; however, it was not statistically significant (p = -.057). Pearson correlation indicated a moderate relationship between supervision and the decision to share LE after feeling unsafe. This correlation shows a negative, linear direction (r = -.390) and is statistically significant at the α = .05 level (p = .017, two tailed). While knowledge, discomfort, and experience variables all show negative, linear relationships with sharing LE in this scenario, none of these correlations is statistically significant (knowledge p = .227, discomfort p = .248, experience p = .410).
In summary, this scenario considered the theme of safety, which was frequently expressed in focus group one. The scenario asked peers to consider the decision they would make about sharing lived experience in situations where they have concerns for safety. While training did not show statistical significance as an indicator, it was found that the more supervision was used to discuss safety the less likely a peer would be to decide to share lived experiences with a client that makes (or had previously made) them feel unsafe. Supervision was the only statistically significant variable. When considering these findings, it’s important to note that the peer population is one particularly vulnerable to trauma, so they likely process experiences of feeling unsafe through their own biases and assumptions based on previous
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traumas. Discussing safety with a supervisor may be powerful in this area because it provides peers with a perspective that is outside their own internal struggles with trauma, past and present.
Table 17.
Scenario 8 Correlations with Decision to Share Lived Experience (LE), (N=37).
Scenario 9 Correlations – Sharing Lived Experience After Feeling Triggered.
In Scenario 9, the sharing LE variable related to continuing to share LE with a client after feeling triggered by the experience. None of the Pearson correlations for this scenario were found to be statistically significant (training p = .203, supervision p = .841, knowledge p = .433, discomfort p = .349, experience p = .572).
In summary, this scenario examined if peers would choose to continue to share lived experience after the experience of feeling triggered when telling a personal story. None of the
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examined variables was statistically significant. This could indicate that a reaction to being triggered is very individualized and based on other factors such as the peer’s own therapeutic process. Ultimately, more research is needed in this area to capture data from a larger sample.
Table 18.
Scenario 9 Correlations with Decision to Share Lived Experience (LE), (N=37)
Scenario 10 Correlations – Sharing Lived Experience Without Empathetic Response.
Scenario 10 represented situations when a peer’s sharing of LE is met without empathy.
Pearson correlations indicated negative, linear relationships for training, knowledge, and discomfort. Positive, linear relationships were indicated for supervision and experience.
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However, none of these correlations was found to have statistical significance (training p = .824, supervision p = .994, knowledge p = .657, discomfort p = .568, experience p = .129).
In summary, this scenario considered how the lack of an empathetic response from a client influences a peer's decision to share lived experience in the future. None of the examined indicators showed statistically significant results. More research with a larger sample size would be needed to fully explore how the lack of an empathetic response may, or may not, influence peers’ decision to disclose.
Table 19. Scenario 10 Correlations with Decision to Share Lived Experience (LE), (N=37).
Validity and Reliability of Survey.
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The Peer Lived Experience Survey (PLE) created for this study was modified from the Boundaries in Practice Scale (BIP). The BIP, “has sound face, content and construct validity, and adequate internal consistency reliability. As a composite score, the BIP has reported Cronbach’s alpha of 0.906 with 0.929, 0.849, 0.781, and 0.863 for the Knowledge, Comfort, Experience, and Ethical Decision-Making subscales, respectively” (Fronek & Kendall, 2016, p.3). While the BIP’s validity and reliability testing does not transfer to the PLE, it provided a solid foundation for a validated format and construct. Additional testing will be needed to fully assess the validity and reliability of the PLE. However, initial processes to establish validity and reliability are discussed in this section. 
Validity.
Both content validity and construct validity are considered to assess the PLE’s overall validity. Expert judgement is a leading test of content validity, specifically to determine if the survey is representative of the construct being measured (Livingston & Zieky, 2019). In this situation, peers are the experts on the experience of peers. Focus group 2 was convened to establish the PLE’s content validity. Focus group 2’s discussion considered the PLE’s content validity, and the survey was revised as needed based on feedback from the peer experts. A full consideration of construct validity will require additional testing, which will be discussed in Chapter 6, Recommendations for Future Research.
Reliability.
Cronbach’s alpha is defined as, “a measure of internal consistency reliability that assesses the extent to which items on a scale are correlated with each other” (Creswell, 2014a, p. 4). SPSS was used to calculate Cronbach’s alpha to assess the PLE’s reliability, to determine if items are
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measuring the same constructs. The PLE’s Cronbach’s alpha coefficient was .874 which indicates a high level of internal reliability.
Conclusion
The findings of the thematic analysis from focus group 1 were used to modify the BIP into the PLE. The second focus group established PLE content validity through expert judgment. The PLE was revised and then distributed to peers across Missouri. Data from the PLE was considered using descriptive and correlation statistical analyses. The interpretations of this data will be discussed in Chapter 5, Interpretation of Findings. While further testing is needed to establish the validity and reliability of the PLE, expert judgment indicates content validity and Cronbach’s alpha indicates consistent reliability.
Chapter 5:
Interpretation of Findings
Introduction
This chapter will interpret the findings within the context of each research question. As this study followed a sequential model, the interpretation of findings will follow the sequence of the study and interpret qualitative findings; then quantitative findings; and, finally, the primary research questions incorporating both quantitative and qualitative findings.
Qualitative Research Interpretation of Findings
What themes and/or scenarios related to the disclosure of lived experiences emerged that were used in the survey's creation?
The four major themes identified through thematic analysis of the Focus Group 1 transcript and recording were Being Triggered, Instilling Hope, Connection, and Disclosure Decisions. Each theme evolved as a primary theme due to its frequency during the Focus Group 1 discussion and its ability to encapsulate the many ideas coded during thematic analysis. The primary themes arose organically from the discussion. They aligned with SAMHSA’s guiding principles of the recovery model, specifically the values of hope, person-driven, many pathways, peer support, relational, addresses trauma, strengths and responsibilities, and respect (SAMHSA’s 10 Guiding Principles). This alignment validated the theoretical underpinnings of recovery in the daily work of peers. Each of the ten scenarios within the survey is directly connected to one of these primary themes. Table 5.1 illustrates the connection between major themes and survey questions.
Table 20. Themes Connection to Survey Question.
Major Theme from Thematic Analysis PLE Survey Scenario
Being Triggered
Instilling Hope
Connection
Disclosure Decisions
Scenarios: 3, 5, 6, 8, and 9
Scenarios: 1, 2, 3, 4, and 7
Scenarios 2, 3, 4, 5, 6, 7, and 10
All scenarios incorporated the decision making required of peers regarding sharing their lived experiences.
The developed scenarios also utilized frequently discussed settings and situations from Focus Group 1. The intent in using approximations of the participants’ experiences for the survey was to create an instrument that would present familiar scenarios to peers.
How were these themes sorted into categories of vignettes (traits) for the survey vignette creation?
The sorting of categories for the scenarios evolved organically from listening to the commonalities within the peers’ shared stories. It was important to the peers in the focus group that the scenarios included moments of feeling overwhelmed and unsafe as many of their decisions occur within these contexts. Focus group 2 provided the context confirmation that the essence of the stories shared was captured within the simplified scenarios.
Did additional themes emerge that warrant additional survey questions and/or further research beyond the scope of this study?
Several additional themes were noted that extend beyond the boundaries of this study. These include unclear or unreasonable work expectations, low wages, maintaining the peer’s
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own recovery while working as a peer, the costs and benefits of repeatedly sharing portions of their lived experiences, sharing lived experiences with colleagues, and the peer's role within a multi-disciplinary team. These will be explored further in Chapter 6, Recommendations for Future Research.
Did the questions presented in the first focus group, which are based on a review of existing literature, elicit responses that contributed to a fuller understanding of peers’ use of lived experience and the peers’ use of professional boundaries?
Both the guiding questions and the focus group format elicited insightful and in-depth responses. The peers within the focus group relayed their ideas and opinions through the sharing of stories. Questions that provide space for peers to exchange ideas through stories were most effective. Peers recognized their own experiences through the stories shared by other peers and the stories built upon each other with minimal need for guidance or redirection. Unintentionally, the peers modeled how they use their lived experiences with clients by using their lived experiences within the focus group.
The concept of professional boundaries was less relatable to the peer group. They discussed boundaries as only externally- imposed rules, such as the policies of their employers. However, reframing the idea of boundaries into the realm of their personal choose to disclose or withhold personal lived experiences with/from clients, opened the discussion to a full and rich consideration of how those decisions are made, both intuitively and thoughtfully. The peers in the focus group have clear boundaries to maintain their own safety and recovery; however, they do not always consider these lines as part of the construct of boundaries. Terms such as selfprotection and inner circles of privacy resonated more with the group than the term boundary.
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Based on the second focus group responses, did the created survey questions have content validity? If not, how were the questions changed to improve content validity?
The purpose of the second focus group was content validity, to check if the designed scenarios captured the essences of the experiences and themes expressed during focus group 1. Each question was examined during focus group 2 and connected to the discussion from focus group 1. The peers suggested changes to some of the language to more accurately express their experiences; in some cases, this was to align with their professional jargon, and in others, it was to make the scenario more explicitly tied to common scenarios peers experience. Based on the second focus group expert judgment and the changes made to language, the survey questions have content validity.
Quantitative Research Interpretation of Findings
To what extent do peers feel comfortable using lived experience?
Survey findings show that the level of comfort, or discomfort, is scenario dependent. The standard deviations across scenarios for level of discomfort ranged from s = .608 to s = 1.145, with the mean standard deviation of .838 across the scenarios for level of discomfort. These frequency statistics show that comfort is not only scenario-dependent but also has moderate variability among respondents. Everyone's threshold for comfort varied based on their own experiences, the lens through which they perceived the actions of the client. Correlation data showed that levels of discomfort tended to have negative, linear relationships with the decision to share lived experience with a client. The greater the amount of discomfort, the less likely a peer would choose to disclose their own story. The quantitative findings are aligned with the experiences collected during the qualitative phase of research. As one peer stated during focus
group 1, “I want to tell my story so they can feel like I get it but I need to feel safe to reach out in that way. With some clients that can take a little time.” Combining what was learned through the focus group with the statistical analysis, level of comfort appears to be tied to the specifics of the scenario, the unique past experiences of each peer, and the dynamics of the relationship between peer and client.
To what extent do peers feel knowledgeable in how to use lived experience?
Survey responses to level of knowledge also showed variability between scenarios, indicating that different peers feel moderately knowledgeable in different types of scenarios. Standard deviations ranged from .501 to .947, with a stand deviation mean of .748. Similar to levels of comfort, peer responses varied based on their own personal experiences. Correlation data indicated that level of knowledge has a positive, linear relationship with the decision to share lived experience in any scenario. The more the peer feels knowledge in a certain area, the more likely they are to share their experiences related to that area. The statistical findings align with the quantitative data collected in phase one. Peers discussed that the more interaction they have with a diverse group of clients, the more they feel they know about how to handle situations. Knowledge and experience, while measured separately in this study, are inherently intertwined for peers.
To what extent did peers feel experienced in using their lived experience?
The variable of experience also seemed to be scenario-specific and specific to each peer's unique past. The range of standard deviations among experience level within scenarios was .633 to 1.187. The standard deviation mean for experience across scenarios was .887. Using information from the qualitative data, this variability can be interpreted as reflecting the peers’
broad interpretations of what constitutes experience. It was clear from the qualitative data that experience represented both the peers’ personal lived experiences and professional experiences as a peer. They discussed the utilization of personal and professional experience interchangeably. The variability found within the experience questions in the survey can, in part, be accounted for by considering the total world of each peers’ experiences. Correlation data shows clearly that the likelihood of a peer deciding to disclose personal information increases as their sense of experience in that specific scenario increases.
Did the type of scenario affect the peers’ comfort, knowledge, and/or experience? What domain of the presented scenarios seemed to be significant (knowledge, comfort, or experience) related to the peer’s choice to share their lived experience?
Both the qualitative and quantitative findings indicate that the specifics of each client-topeer interaction greatly affects the peers’ sense of comfort, knowledge, and/or experience. Both correlation data and quantitative data reflect that level of comfort is the most significant indicator of if a peer will share their lived experiences. Qualitative data adds information to this interpretation by suggesting that level of comfort is strongly connected to safety, both psychic and physical. Level of comfort is also strongly relational and highly related to the relationship dynamics of the peer-to-client dyad. While level of comfort was indicated as the most significant factor, knowledge and experience were also important indicators of peers’ decisions surrounding sharing lived experiences.
Does the created survey show construct validity and reliability?
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Context validity was verified through the expert judgment of Focus Group 2. However, further testing to establish construct validity should be the aim of additional research. A high level of reliability was indicated by Cronbach’s alpha of .874.
Primary Research Interpretation of Findings
The findings of the qualitative information and quantitative data are considered alongside each other to answer the primary research questions.
How do peers perceive their use of lived experience within the peer-to-client relationship?
Peers perceive their use of lived experiences in their professional lives in a multitude of ways. The peers in focus group 1 described their use of lived experience as the key defining trait that distinguishes them from other professions on the treatment team. They view use of their own experiences of mental illness and addiction, as the key trait that makes their work with clients unique and effective. One peer described this as, “When someone’s talking to me they know I’m not full of bullshit. I’ve been in that hole. I’m still in it sometimes. That’s not the same with everyone they see.” Lived experiences as a defining trait is expressed as a source of pride with peers. More than one peer expressed their employment as a peer as a sort of arrival or recognition that they survived their illness. Thoughts such as, “I never thought I’d be alive today much less doing this work,” were expressed repeatedly by all the peers in the focus group.
One of the primary identified themes was instilling hope, incorporated into several survey scenarios. Each of the peers expressed that their own paths of recovery were directly influenced by others who share the same struggles. One of the peers said, “I used to be a drug deal, now I’m a hope dealer.” Instilling hope was expressed as a bi-directional experience. As their experiences
Stevens, Dissertation provided potential hope for their clients, both sharing their successes and seeing their effect on certain clients, served to expand their own sense of hope for their current life situations. Each person in the focus group still faces numerous challenges related to their living with mental illness and/or addiction. Within the focus group they discussed their issues of family relationships, child custody, continued poverty, and their own access issues to needed mental health services. Providing hope to their clients had a secondary effect of increasing their own hope that they can handle current life challenges.
Peers also consider their use of lived experience to be the most challenging aspect of their profession. The role of lived experiences does not appear to be understood or appreciated consistently by the other professionals on their multi-disciplinary teams. Uninformed colleagues tend to diminish the role of peers and treat them as assistants. Peers also perceive their use of lived experience to sometimes feel uncertain. On peer described this experience as, “it’s like walking a tightrope. One person thinks you shared too much – no boundaries! One person thinks you hold back too much so you’re not really helping your clients. It’s sometimes just damned if you do, damned if you don’t.”
Finally, peers perceive their use of lived experienced as evoking both vulnerability and empowerment. The act of sharing parts of self repeatedly with clients in pain, can make a peer feel vulnerable to that pain themselves; naming and discussing the experience can also be an empowering experience. This dichotomy of experience is reflected in the variability of responses to the quantitative survey. However, the qualitative and quantitative data suggests there is some predictability regarding the scenarios in which peers will choose to share their experiences. When peers feel comfortable (safe), armed with knowledge, and can relate to a situation through
Stevens, Dissertation their own experiences they are more likely to share lived experience. While peers discussed their decision on what to share and not to share as one of the most important parts of their jobs, they could not fully articulate how they make that decision, “sometimes you talk it out with like a supervisor or sometimes. But mostly you just go with your gut.”
Training and the use of supervision both have positive relationships on a peer’s decision to share lived experience. However, both qualitative and quantitative data indicate that they are not as significant in peers’ decision-making as comfort, knowledge, and experience. This possibly indicates room for growth in both these areas to support the unique work of peers.
Can the Boundaries in Practice (BIP) scale be modified to reflect the domain of peers’ use of lived experience in a way that has both content and construct validity, and reliability?
While validity needs to be further tested, this research indicates that modifying the BIP into the PLE Survey is reflective of the peer experience in a way that indicates validity and shows reliability.
Psychodynamic Interpretation of Findings
Literature about the creation of peer support services does not specifically claim self psychology as its theoretical underpinning. However, the close alignment between self psychology and the concept of recovery/peer support services argues against coincidence. Instead, their concurrent development perhaps points to the zeitgeist of connection, the interplay between self and others, during the 1960s-1980s. In addition to the clear alignment of theory discussed in Chapter 2, the findings of this study further support the cohesiveness found between self psychology and the implementation of a peer support practice.
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From readings such as Judy Chamberlain’s memoir On Our Own (1978) to the conversations with peers within this study, the experiences of those living with mental illness and/or substance use disorders featured prominently in this study. It became increasingly clear that Flanagan was correct when he asserted that, “society, when it is oppressive, can be seen as a selfobject that has tremendous power to destroy and that often contributes to a lack of self cohesion” (2016). The peers’ stories pointed toward the stigma and oppression that exists at the intersections of mental illness, addiction, racism, sexism, living in poverty, etc. Systemic injustices were cited repeatedly during the focus groups, particularly around the challenges of navigating the mental health system. One peer aptly stated in focus group 1, “I couldn’t ask for help the way they needed me to ask. It’s like you’re supposed to be fucking well enough to know what you need. I’m here today only because I got arrested. It was like no one else could even hear me. It took getting locked up.” Another peer described grocery shopping while hearing voices associated with her mental illness. She described, “I was quiet in the store because I know they don’t like me there. When the voices started ... well, I knew they were just from my head. So I put on my headphones so I would look normal. But I talked out loud a little and one time I laughed. They were following me and I got kicked out because I was scaring people. But it was so embarrassing. I just wanted to die. I never went back to that store – even when I was on medsand it was the only grocery store I could walk to so that meant some hungry days.” Another peer describes the physical danger frequently experienced by those who appear different. He talked about a client he recently visited in the hospital after the client was injured in an interaction with law enforcement. In this situation, the client was incorrectly identified as the aggressor in a dispute because of his outward symptoms of mental illness. The peers in the focus group agreed
Stevens, Dissertation that law enforcement frequently assume that a person with mental illness is dangerous, instead of seeing them as a vulnerable person in need of help.
Each of these narrative examples illustrate ways society at large responds to those with mental illness. Self psychology proves to be a well-aligned lens through which to consider peers and peer relationships from a psychodynamic perspective. From this lens, we consider people with severe mental illness and/or addiction to be lacking a cohesive self. This deficit is demonstrated by their inability to self-regulate or maintain their well-being. In the experiences shared above, society is reflected in the interactions with the mental health system, the local community (grocery store), and law enforcement. As Flanagan asserted, an oppressive society serves as a selfobject. Society responds to these individuals without empathic attunement to their needs or, at an even more basic level, to their humanity. An oppressive society impedes the development of the nuclear self as selfobject needs remain unmet. In the examples above, society’s responses to these people failed to meet any of their self object needs, or parts of self. The mirroring need was not met as they did not receive needed help. Likewise, the lack of a safe response resulted in a failure to meet the idealizing need. Finally, the need for twinship was also unmet as, in each story, the person was seen as an other, outside the boundaries of normality. Society’s responses viewed them as a scary, or dangerous, outsiders. The damage to self caused by these and similar experiences reinforced the messages of past traumas and previous injuries to self. Instead of society providing systems that support the development of self, the peers described experiences of misalignment, intense stigma, and a lack of cohesion or safety.
Just as self psychology helps explain the damage inflicted by an oppressive society, it also provides greater depth to our understanding of why the peer relationship appears to be of benefit to their clients. Contrary to the responses of societal and systemic stigma, relationships that are
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empathically attuned lead to the development of a cohesive self (Flanagan, 2016). The very structure and foundation of the peer to client relationship establishes peers as potential selfobjects for their clients. The experiences of peers support the argument that a meaningful relationship with a peer can provide the client with a selfobject strong enough to counter some of an oppressive society’s injuries to self.
Several of the key quotes highlighted during the thematic analysis clearly demonstrate how peers meet selfobject needs. For example, “I tell my clients that I take my chronic suicidality with me to Walmart,” encapsulates the idea of twinship. It states to the client that the peer is like them. The peer and people like the peer live and walk in the same world as the client; they shop in Walmart. This same peer goes on to share an expression of the idealized part of self, “You can take your anxiety to the grocery store. Let’s do it together. Let’s go shop. I’ll show you how to do it. We can breathe together in the cup aisle.” This statement models how peers can function as an idealizing selfobject for their clients. This quote and the action of shopping create an experience of safety, strength, and inspiration. The peer shows the client that shopping can be done safely, even with the presence of anxiety. The peer says there are strategies that the peer uses and trusts; and the client can use and trust those same strategies. The peer’s confidence in their ability to “breathe together in the cup aisle” provides an inspiring, idealizing selfobject interaction.
Peers in the focus group strongly connect their own past needs with what they provide to their clients. This connection was expressed numerous times, but this quote encapsulates this thought, “I think a lot of it is just them knowing that there’s something besides their disability out there and that they can … actually get a better life. It helps them out a lot, because when I was in my recovery, I never thought that I would be in a job like this. In my wildest dreams I never would have thought so. Just showing them that there is something beyond what they think. I think
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that is a lot of it. Just starting that spark.” Once again, the idealizing need is clearly expressed through the idea that a person who also lived a similar experience succeeded in their recovery. A mirroring need is also met as the client's potential is recognized and affirmed. The peer is telling the client that, even in the midst of their addiction, they were a person with potential. The client, likewise, is also a person of potential.
Finally, a peer with the lived experience of addiction, mental illness, and repeated incarceration stated, “… when I talk about overcoming incarceration, you know, because we get a lot of people who are even multiple time felons … and I’m like, ‘Look. Here I am. I have a job I never knew I deserved. I was able to do these things. You don’t have to be defined by your criminal record … let me walk through this with you. Let me love you through this and show you how I did it.’” This quote arguably speaks to each of the three, core selfobject needs. The peer can meet the need of twinship, as someone who has also lived as an incarcerated person. She shows mirroring by affirming that the person is more than their criminal record. Finally, an idealizing need is met through the idea that she is someone who knows how to navigate such a complicated recovery.
It is also valid to consider the peer experience of sharing lived experiences from a self psychology perspective. Particularly in the consideration of empathetic attunement, the peers expressed feeling troubled or triggered when they shared lived experiences with a client and were met with a response devoid of empathy. While the peers have developed a cohesive sense of self through their own recoveries, sharing their past struggles frequently with people who are not always capable of empathy can cause potential injury to the peer’s cohesive self. This risk of sharing lived experiences is compounded by the fact that the peers still function as people with mental illness within an oppressive society. Flanagan asserted that selfobject needs change and
mature in the course of healthy self development (Flanagan, 2016). Similarly, peers will need empathically attuned selfobjects to continue their ongoing paths of recovery and development of a cohesive self. This ongoing selfobject need speaks to the importance of studies such as these that examine, in part, how supervision can support peers in their work
Revisiting Assumptions from Chapter 1
1. Peer services are of benefit to and support recovery in the clients they serve.
2. Peers perform a role unlike that of traditional social work or therapy as they are required to share their personal experiences and struggles.
3. Social workers or other clinicians in non-peer roles maintain boundaries that separate their personal and professional lives, including the withholding of personal experiences.
4. Peers create a frame different from the frame in non-peer, professional relationships.
5. Peers would benefit from more robust training on how to use lived experience and clinical supervision in this area.
6. Boundaries that allow repeated self disclosure are crucial to positive outcomes in peer support services but can also create vulnerability and risk for the peer.
Summary of Interpretation of Findings
Comfort, knowledge, and experience all appear to be factors in peer decisions regarding boundaries, or the sharing of lived experiences. A scenario-based survey is an effective way to gather data regarding these variables in ways that stay true to the peer experience. Sharing lived experience is frequently touted as the key to successes within peers’ work with clients; however, it remains the least understood aspect of their work. The PLE survey is an effective tool to begin the process of articulating factors that influence peers’ decisions and the ways in which training and supervision can support peers in these decisions.
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