Adapting the Parent Connector program for caregivers of adults with SMI: the Family Connector experience

Schizophrenia and other psychotic disorders are serious mental illnesses (SMIs) associated with substantial functional impairment, increased risk of premature mortality, high levels of familial distress, and significant economic burden^3,4. Individuals with first episode psychosis (FEP), typically occurring in adolescence and early adulthood, are particularly vulnerable. The immediate period after FEP is critical in determining illness trajectory³. A comprehensive and coordinated approach to intervention is essential. In fact, in response to research demonstrating that evidence-based psychosocial intervention and medication could significantly improve illness outcomes, FEP programs offering early intervention services have been developed and implemented across the globe^4,5,6. Unfortunately, individuals with FEP frequently stop treatment before it is clinically indicated. While disengagement from treatment may be due to a variety of reasons that are unrelated to symptoms of SMI (e.g., finding meaningful support outside standard services, dissatisfaction with FEP services, which can be limited in their trauma-informed and culturally-relevant care approaches^7,8), premature termination of FEP services may threaten intervention effectiveness.

Highlighting the important role of caregivers, lack of family involvement predicts treatment disengagement^5,6. In addition to sustaining treatment, caregiver engagement is often necessary for securing services, as many systems-level barriers to care exist. For instance, there is often a delay in finding and enrolling in an FEP program, likely due in part to the insufficient knowledge about psychosis of community providers⁴. Then, when discharging from FEP programs, there is frequently a lack of high-quality continuing care options, increasing vulnerability to relapse. This is true of both clinical care, which often does not include both medication and evidence-based psychosocial interventions following discharge, and non-clinical care (e.g., employment and housing support)⁴.

While caregiver involvement is essential, caring for individuals with SMI can be challenging. Psychological distress often results from coping with their loved one’s prolonged heightened distress levels, experiences of sometimes terrifying, non-consensus reality, frequently unpredictable changes in functioning, and increased risk of harm to self or others^9,10. These caregivers experience a range of mental health conditions including, but not limited to, anxiety, depression, substance use disorders, and post-traumatic stress disorder¹¹. Thus, promoting the loved one’s recovery requires simultaneous attention to caregiver well-being.

Research on how to address caregivers’ needs has found that both information, in the form of psychoeducation and resource navigation, and emotional support are critical¹¹. A peer-to-peer family support intervention model would likely fill this need. These interventions are delivered by a peer professional who has lived experience navigating similar challenges with their own loved one, and aim to reduce caregiver distress, increase self-efficacy, and support caregivers as they work to meet their loved ones’ service needs. This type of direct and personal connection between the peer and caregiver can enhance caregiver well-being and foster sustained engagement. While family education and involvement in treatment are prioritized within FEP programs across the US, these family peer support services are not universally provided.

There is a dearth of research examining family peer interventions for caregivers of adults with SMI. Evidence available on their effectiveness has been variable across outcomes, with indication of positive effects for the loved one’s functioning and symptom level¹². This paper adds to the literature and reports on an ongoing NIMH-funded study evaluating the effectiveness of Family Connectors (FC), a manualized peer-to-peer support and education program, for caregivers of young adults being discharged from FEP programs. The FC program represents an adaptation of the evidence-based Parent Connectors (PC) program^1,2, developed for use with caregivers of school-aged children with emotional and behavioral conditions. This project is the first application of this intervention to caregivers of adult loved ones and those with SMI. Since the inception of the project, a collaborative environment was created and maintained to promote cultural exchange^13,14 among the research team and the five family peer professionals delivering the FC intervention (called family connectors or FCs). The lived experience of the FCs allowed for an invaluable understanding of which aspects of the intervention were beneficial and how a process of continued adaptation could improve the fit of the program for this population. The ultimate goal of this paper, written collaboratively by the research and FC team, was to document the adaptation process and changes applied to the intervention, highlight important clinical considerations, and advance research on peer-to-peer support for caregivers of adult loved ones with SMI.

This adaptation was conducted as part of an ongoing study examining the effects of the FC program on the self-efficacy, health services activation, and hope of caregivers of young adults discharged from a FEP program. Other outcomes of interest include those related to the loved one’s functioning (e.g., employment status, treatment adherence). Within the study, caregivers are recruited to participate through OnTrackNY, New York’s FEP program. OnTrackNY serves people ages 16 to 30 years old who have experienced psychotic symptoms for at least one week with onset in the previous two years. They provide multidisciplinary treatment to help individuals with FEP work toward their recovery goals. The importance of family involvement and support is emphasized throughout the OnTrackNY manual, and clinician-led family psychoeducation groups are offered within the program^15,16. However, family peer professionals are not integrated within their care team. Of note, this study is not associated or integrated with the services provided at OnTrackNY.

FC program

As indicated, the FC program represents an adaptation of the evidence-based PC program, developed by Kutash and colleagues^1,2 for caregivers of school-aged children with emotional and behavioral concerns. In the PC program, PCs, who are trained peer support professionals, draw from the three components of the Theory of Planned Behavior to address caregiver perceptions and beliefs that may affect their engagement in services and supports. The PC program posits that parents will engage in services and improve coping if they (1) have positive social supports (subjective norms), (2) believe they have some influence over their child’s condition and experiences (perceived behavioral control), and (3) believe that service engagement will be beneficial for their child and family (attitudes)². It is the job of the PC to encourage these attitudes and beliefs through informational, instrumental, and emotional support. Regarding program structure, the PCs participate in intensive manualized training. Training includes didactic sessions, role-playing and sharing of experiences, and team building. Content covered consists of communication skills, including active listening and reframing, the nature of empowerment, maintaining boundaries, psychoeducation on emotional disturbance and special education topics (e.g., individualized education programs), and ethics and confidentiality. The difference between intervening, which is not the role of the PC, and providing resources and encouraging caregiver engagement is emphasized. PCs are also provided a directory of community resources (e.g., food banks, emergency services, education advocates). After completing training, PCs are assigned caregivers to contact once per week by telephone over the course of the school year. PCs track the duration and general topics of the phone calls on contact logs. They meet weekly with a mental health professional, called the PC coach, for support with their cases^1,2.

The FC program is the first application of this intervention to caregivers of adult loved ones and those with SMI (i.e., young adults being discharged from FEP programs). The initial FC adaptation was a collaboration between the PC program directors, our research team, and our FCs. It was iterative and took place over a 3-month period that included a series of meetings. The goal was to retain the theoretical underpinnings and foundational components of the Theory of Planned Behavior in the PC program and modify it for a different population. As in the original PC program, FCs received intensive manualized training using the same format. Training covered similar topics, with content relevant to the FEP population added (e.g., psychoeducation on psychosis and OnTrackNY). As in the PC program, FCs conduct weekly telephone calls with caregivers to provide support. The calls are offered for 6 months with the goal of promoting caregiver well-being and encouraging engagement in services for their loved one and themselves. Again, as in the original PC program, the FCs meet weekly with the FC coach, a mental health professional, to discuss cases. In this study, the FCs and the FC coach received training from PC program developers in February 2022 and FCs began providing the service to participants in March 2022. At the time of this paper, the FC team had served 21 caregivers.

Approach to adaptation

From the beginning of the study, both the research team and the FCs participated in an ongoing partnership with open communication about program implementation and evaluation where all expertise was valued. The team included a senior mental health services researcher, a clinical psychologist (the FC coach), several bachelor’s level research assistants, and five FCs. Further, one FC with extensive experience as both a researcher and a caregiver served as the culture broker, an intermediary between the realms of research and practice who ensured communication and understanding on both sides¹⁴. All FC and research team members were female, and 70% identified as non-Hispanic and white. All FCs had lived experience caring for adult loved ones with mental health needs; three had loved ones who were discharged from FEP programs.

Through frequent contact between the FCs and the research team over the first year of implementation, an appreciation for the need for further refinement emerged. Therefore, a formalized review process was initiated, where the FCs reflected on the strategies presented in the manual as they pertain to caregivers of young adults with SMI. To do this, the manual was divided into ten sections. The five FCs then reviewed each section with the research team in a weekly group meeting and reflected on the strategies presented as they pertain to caregivers of young adults with SMI. In these meetings, the group discussed: (1) if and how each strategy had been applied to the FCs work, (2) which strategies were the most helpful, and (3) what content or methods needed to be edited, added, or removed to improve the fit of the intervention. Through this process, we documented both the types of adaptations made (e.g., content, context), and the process of how these decisions were made (i.e., the principles that were agreed upon and followed). We used the framework described in Stirman et al.¹⁷ to classify and describe these adaptations. This framework differentiates between changes to the context and content of the intervention, as well as changes that influence training and evaluation. This system also involves classifying modifications based on which team members made the decision to modify the intervention and for whom the modifications were made. The team then collaborated on manuscript preparation, co-authoring this paper, to document our findings from this process.

As noted, all adaptations were informed by the lived experience of the FCs, both as caregivers of adults with mental health needs and in their delivery of the program to participating families in the first year of implementation. Decisions to adapt the program were made collaboratively between the FCs and research team. Based on notes taken during the formal review of the manual and throughout implementation, we classified adaptations according to the framework presented in Stirman et al.¹⁷, differentiating context, content, and training and evaluation modifications. Following initial modifications made by the program developers, where the manual and training were adapted to focus on a new population (i.e., caregivers of young adults with SMI), no context modifications were found necessary. The adaptations made following implementation were primarily classified as content modifications. There was one notable change classified as a training and evaluation modification. These are described below and presented in Table 1.

Content modifications

Tailoring/tweaking/refining

The content modifications made to the FC program following implementation largely represent tailoring/tweaking/refining the program, while maintaining major intervention principles and techniques, to better fit the population served¹⁷. These included, first and foremost, a more explicit emphasis on the unique considerations and skills needed when caring for adult loved ones. Caregivers of adult loved ones often have been managing their loved one’s mental health needs for several years, have a long history of successes, challenges, and even trauma within the service system, and have their own strategies for advocating and finding resources. Therefore, it was essential that FCs did not assume caregivers were new to service engagement, because it was likely they had already developed skills in this area. Therefore, teaching service engagement was not and is likely not going to be a primary or first goal for any caregiver engaging in the FC program. It was instead important that FCs allowed for extra time to learn about a family’s service history and gain their trust, and then support them in identifying service providers within an often tragically limited service system.

In addition, providers in the adult system (i.e., therapists, physicians) and those who work in the child system often have not been trained to work with caregivers of adults, and there may be legal limitations to the extent caregivers can be involved in their loved one’s services. Therefore, FCs helped caregivers build respectful partnerships with adult service providers, encouraged a team approach to care, and, in cases where the loved one did not provide consent permitting caregiver involvement, taught caregivers to understand what is and is not permissible under HIPAA. The boundaries of HIPAA are particularly important, as the FCs noted that providers often refuse any contact with the caregiver if consent is not provided. However, lack of consent does not prevent the caregiver from providing critical collateral information to providers. Caregivers can also receive information from providers when necessary to treat the loved one, especially in times when the loved one does not have capacity to make decisions (e.g., when experiencing a psychotic episode) or when the provider believes there is a serious and imminent threat of harm to themselves or others¹⁸. Formal education in these considerations should be added to FC program trainings in the future.

In promoting a team approach to care, the FCs believed training and encouraging all caregivers to interact with their adult loved one as a partner, rather than a person of authority, was and continues to be crucial. At the same time, FCs validated that disengagement in their loved one’s care, especially in the context of preserving caregiver well-being, is acceptable. Further, the loved one’s insight into their own symptoms is complex and may vary across time¹⁹. Anosognosia, or the lack of awareness that one is ill, is a neurological condition that can affect the loved one’s perceptions of and adherence to treatment²⁰. While, again, there may be many reasons for disengagement (e.g., stigma, medication side effects, dissatisfaction with care), varying perspectives on symptoms across the caregiver and loved one can be a significant barrier to treatment, especially in the context of anosognosia. As a result, it can affect the relationship between the caregiver and loved one, and the ways in which the caregiver can or should support their loved one at a given time. This has been relevant to the work that the FCs do. Therefore, a nuanced presentation of the role of insight in treatment engagement as well as strategies for effectively communicating with loved ones with SMI, particularly those with anosognosia, should be discussed in future trainings.

Next, the FCs agreed that it is important to encourage caregivers to understand the benefits of, and feel confident in, participating in their loved one’s services, as is emphasized in the FC program manual. However, given the chronic and severe nature of SMI and the loved one’s status as an adult, much of their service engagement and illness course remains outside of caregiver control. Because of this, the FCs highlighted that it was and continues to be as important—if not more important—to affirm caregiver lack of control and provide them space for emotional processing.

In providing FC services, the FCs often normalized caregiver grief for the life that they envisioned for themselves and their loved one prior to the onset of SMI, and helped caregivers to accept that the life they wanted for their loved one and for themselves may not be attainable. FCs modeled a successful reframing of expectation to engender hope for a rewarding and fulfilling life following SMI diagnosis. As such, the FCs suggested that instruction in providing emotional support should be explicitly tailored to these unique experiences of caregivers of adult loved ones with SMI in future trainings. Among these, ambiguous grief, isolation, shame, and trauma should be targeted. Relatedly, many caregivers receiving FC services had also experienced trauma secondary to their loved one’s SMI. The FCs believed more direction in how to respond to trauma-related symptoms in caregivers would be beneficial in future trainings.

Further, the FCs believed that they placed greater emphasis on helping caregivers plan for and manage crises in their implementation of the program, as this population frequently encounters crises with life and death consequences. This included inquiring about safety and reviewing crisis plans on every call and providing education on structural supports when relevant. As such, future FC trainings should include both education on structural supports (e.g., 988 vs. 911 emergency assistance, Assisted Outpatient Treatment [AOT] plans, Psychiatric Advance Directives [PADs]), and more clarity on how the FC can best support the family in times of crisis (e.g., specific recommendations for caregivers, increased frequency of calls).

Finally, adults with SMI are a marginalized population, and many families of loved ones with SMI hold additional marginalized identities (e.g., race/ethnicity, gender, class, language). While discussed in the training, the FCs believed that a heavier emphasis on cultural considerations was needed in their work. As an intervention designed to promote empowerment in caregiver advocacy and service navigation, cultural competence and humility are mandatory. Social norms vary person to person, and cultural barriers to care exist, necessitating FC attention.

Integrating another approach into the intervention

The FCs found that educating their caregivers on the LEAP (Listen-Empathize-Agree-Partner) method²¹ has been helpful, particularly in cases where the loved one and the caregiver had different views on the loved one’s symptoms and treatment plan. The need for the LEAP method was reported to be greatest in cases where the loved one was experiencing anosognosia. The LEAP method provides communication strategies to build trust and partner with loved ones with SMI to improve attitudes about and adherence to treatment. The LEAP method prioritizes validating and empathizing with the loved one’s experiences, including their delusions, agreeing with the loved one’s perspectives, and maintaining strong and trustful relationships over arguing with the loved one about what is real and what the path toward recovery should look like.

Adding elements

Stigma was discussed in the original manual and is experienced by caregivers of loved ones with a variety of mental health conditions. However, isolation and shame may be amplified in caregivers of loved ones with SMI. Given the lower prevalence and higher severity of SMI, the FCs believed that caregivers often face more stigma. As such, in identifying resources and referrals, a support group for caregivers of people with mental health conditions broadly was oftentimes thought to be not appropriate for this population of caregivers. In fact, our FCs reported feeling more “othered” than supported at these groups because of how other caregivers reacted to the uniqueness of their family’s experiences and crises. Therefore, greater supports and resources tailored to caregivers of loved ones with SMI were necessary. To begin to fill this gap, we developed an online hub to post resources and recommendations for caregivers’ continual referral. While not feasible in the current effort, the FCs believed that future efforts should do more for caregivers following discharge from the program and consider including a monthly support group. A group facilitated by the FC program may ease the transition post-intervention and continue to offer support targeted to this unique population. More broadly, the FCs highlighted that increasing the availability of support groups in the community specifically for families of loved ones with SMI is integral.

Lengthening/extending

The FC program is a time-limited intervention currently offered for 6 months. During our implementation, this time frame was extended in some cases, particularly when working with caregivers whose loved ones were in crisis or were not yet connected to a full clinical care team. Due to limited service availability, it often takes longer than 6 months for a caregiver to identify a provider who accepts patients with SMI and to secure an appointment, leaving little, if any, time for skill building on how to partner with providers. Further, unlike for school-aged children where the school year has a clear start and end date, there is no natural endpoint for FC services. In fact, due to the non-linear recovery path of SMIs, the FCs reported that discontinuing after 6 months was often difficult and artificial; crises will continue to occur, relapse is unpredictable, and there are few appropriate step-down options to refer to, as noted earlier. Therefore, in our implementation, the intervention period was lengthened by 2 months for several caregivers whose loved ones were currently in crisis and those who had been working towards but had not yet secured services.

Training and evaluation modifications

While no changes were reported necessary to the way in which the FCs were initially trained on the intervention (i.e., a mix of didactics, role plays, and team building), supervision practices were modified. In its original form, the FC intervention included a two-hour weekly supervision meeting with the FC coach, a mental health professional, to discuss cases. While beneficial, this did not seem sufficient in fully supporting the FCs. Harnessing one’s lived experience to support caregivers coping in crisis is very complex, and the FCs often needed to process their own intense emotional responses to this work. Therefore, we implemented a weekly peer-to-peer meeting where the FCs met without the FC coach to address feelings of burnout, process any triggers that presented in their work, and receive support.

Concerning evaluation, FCs have used the contact logs to track time spent engaged with caregivers and to capture the content of the interaction during each call. These logs were not modified from the original form used in the PC program. Constructs measured to evaluate program effectiveness in this study were also unchanged but are difficult to report on as the study is still ongoing. We anticipate that there may be more change in caregiver self-efficacy and strain at post-test than in outcomes for the young adult with SMI. While this time-limited intervention aims to provide caregivers with the skills needed to continue to care and advocate for their loved one, which are necessary to improve patient outcome, more time may be needed to create change in their loved one’s status due to barriers related to the loved one’s condition (e.g., anosognosia) as well as systems-level barriers that exist in securing comprehensive supports following discharge from FEP programs. Data from the contact logs and on study outcomes will be available for analysis following study completion.

To our knowledge, this is the first paper to detail the adaptation process of a family peer support intervention for a specific population. While manualized interventions have great advantages, community-informed modifications to improve fit, particularly for vulnerable subgroups, are important for increasing acceptability and potentially improving outcomes. Caregivers of young adults with SMI are one such subgroup, as their caregiving experiences are unique and promoting their well-being in the context of often tremendous challenges is instrumental to their loved one’s recovery. There are other subgroups, especially those with marginalized identities, that require thoughtful adaptation in the application of peer support services. We hope that this effort not only results in a better-suited peer support program for caregivers of loved ones with SMI but also highlights the value of collaboration across stakeholder groups for improving these services.

In reflecting on modifications made to the FC program, changes were of low magnitude. It is likely that the program’s flexibility and emphasis on individualized and targeted supports contributed to our ability to apply the intervention to this novel population with few major adaptations. Our experience suggests that the PC program may be particularly well-suited for application and adaptation to a wide range of groups. Adaptations in this study were primarily classified as tailoring/tweaking/refining the program, which is the most commonly identified adaptation type across the implementation science literature¹⁷. Of note, among considerations related to caring for adult loved ones and factors specific to the experience of SMI, the FCs underscored the need for greater emphasis on cultural considerations for this population. This aligns with previous research demonstrating disparities in the experience and perceptions of FEP, pathways to accessing care, and barriers to quality treatment across different racial groups²². While data are not yet available on effectiveness, we believe that these changes classified as tailoring/tweaking/refining improved intervention fit without affecting the core components of the FC program. Also in line with frequently reported content adaptations across the literature¹⁷, we lengthened the program in some cases where 6 months was not sufficient in meeting program goals. This was often due to systems-level barriers to engagement and/or high levels of crisis. Based on FC experiences, we believe future efforts should consider lengthening the FC program for all caregivers, potentially to 9 or 12 months.

Further adaptations included adding elements, namely an online resource hub, which we believed to be essential during discharge from the FC program. Few community supports specific to the SMI population exist that would be suitable for step-down services from the FC program, particularly in comparison to higher prevalence mental health conditions in children and adolescents. While our online resource hub has served an important role, greater attention is urgently needed to the limited availability of support groups and resources for this vulnerable population in the community. This is particularly true considering research findings consistently documenting the physical and psychosocial health benefits of participating in support groups for individuals with SMI and their families²³. The FCs also encouraged integration of the LEAP method into the FC program. Expertise gained through their lived experience aligns with available research demonstrating that the LEAP communication method is associated with improved motivation for change, insight, and treatment adherence²⁴.

Lastly, there was only one training and evaluation modification, which involved the addition of a weekly peer-to-peer meeting to FC supervision practices. We believe this was key and should be a required component of the program moving forward. While there were benefits to having a mental health clinician act as FC coach and supervise the implementation of the program, acknowledging and respecting the distinct but coordinating areas of expertise of the FCs and the FC coach was integral for success. The clinical skills of the FC coach helped to navigate difficulties that arose for our FCs in delivering peer support services. However, the power of peer support and shared experience should not be limited to those receiving the FC program. Further, research has identified issues, particularly role clarity issues, in the supervision of peer support services by clinicians without lived experience rather than by experienced peer support professionals²⁵. Therefore, both ensuring that all perspectives were heard and valued in group supervision and providing protected time for the FCs to process challenges that presented in their work together, without the FC coach, seemed to be instrumental in preserving and promoting their well-being and retention in the role.

This study has limitations. We recruited families from New York’s FEP program, and the research and FC team were based in New York, limiting the generalizability of our experiences to other areas. Further, only three of the team members had lived experience with FEP programs. While variable, their experiences may not have been representative of the larger population of families served by FEP programs in New York and around the country. Our sample size of caregivers served in the study was also small, again limiting generalizability. Finally, we have not yet obtained feedback directly from caregivers who received the intervention. We are currently engaged in a qualitative study to obtain these data from caregiver participants.

In addition to analyzing these perspectives, future research is needed to standardize these adaptations and test them against current community services. Research should also explore alternative or additional timepoints where the FC program would be crucial in FEP services. Discharge from FEP programs can be difficult, particularly because comprehensive services are often not available or accessible in the community⁴. Because navigating the service system and planning for what is next can be overwhelming, supporting caregivers during this transition is important. However, there would likely be tremendous benefit of this program at intake into the program or even at first crisis (e.g., first hospitalization) prior to accessing FEP services. Caregiver understanding of SMI and of the directions to pursue regarding evidence-based treatment are often at their lowest at this time, and support from an FC could be transformative. Finally, future work is needed to identify optimal avenues for integration of the FC program into FEP programs and evaluate the cost effectiveness of its integration. It is essential this work continue to improve understanding of how best to build on state investments in FEP services and improve outcomes for all family members.

The federal government through SAMHSA’s block grant funding is now mandating all 50 states to provide FEP programs to adolescents and young adults experiencing an initial psychotic episode. These programs offer coordinated specialty care to this vulnerable population. While the coordinated specialty care model includes services for families, there exists no particular model of how best to engage, support, and empower caregivers. Our work builds on current evidence for effective peer-to-peer parent support and is testing a model to optimize and structure support—informational, instrumental, and emotional—specifically for caregivers of loved ones with SMI. The adaptations informed by the lived experience of our FCs in this study provide an important guidepost for states on how to create a feasible family peer-to-peer support model, with the goal of enhancing caregiver well-being and engagement. Research efforts, within this area and across the spectrum of youth mental health services, should continue to promote cultural exchange and center the lived experience of the individuals receiving and delivering this essential service.