Roughly 5 million Americans are diagnosed as having a primary psychotic disorder, and each year around 100,000 will be given a new diagnosis of a first psychotic episode (
1). Research affirms that family and caregiver involvement in their loved ones’ care is associated with better treatment engagement (
2), better treatment outcomes (
3), fewer hospital admissions (
4), shorter inpatient stays (
5), better work and role performance (
6), reduced substance use (
7), reduced mortality (
8), and overall improvement in quality of life (
9). On the basis of the robust literature demonstrating improved clinical and functional outcomes (
10), family interventions for psychosis (FIp) are recommended by national schizophrenia treatment guidelines as standard of care (
11). The most recent iteration of the treatment guidelines suggests that in addition to psychoeducation, FIp should include skills training in symptom coping, communication, problem solving, and stress management, as well as emotional support and enhancing social support networks. Despite this recommendation and the fact that most service users want family to be involved in some aspect of their mental health treatment (
12), only 1.9% of U.S. families with a loved one with a serious mental illness have received a FIp (
13).
In the absence of psychoeducation or skills training, family members experience high rates of burnout, exhaustion, emotional distress, and general medical conditions (
14,
15). To address the needs of family members for both psychoeducation and evidence-based psychotherapeutic skills training to better understand and respond to their loved one’s psychotic symptoms, we implemented a training program called
Psychosis Recovery by
Enabling
Adult
Carers at
Home (Psychosis REACH) (
16). Psychosis REACH is a mental health training program that provides large-group training and skills coaching independent of the mental health system. Pilot data for the 95 “natural supports” (close, supportive relationships) who participated in the original 5-day Psychosis REACH training showed improvements in caregiver mental health between baseline (pretraining) and follow-up (6 weeks posttraining), including a small but significant increase in self-perceived well-being and medium effect sizes for reduced depressive symptoms and for reduced anxiety symptoms (
16). We were interested in ascertaining whether we could produce comparable outcomes with briefer versions of the training and sustain them over a longer follow-up period. This study was approved by the University of Washington Institutional Review Board.
Methods
We conducted a survey among attendees of a 1- and 4-day training sessions across three timepoints: pretraining, posttraining, and 4-month follow-up. We describe below the training model, eligible participants, and survey design. The training took place in May 2019.
Training Model
Psychosis REACH consists of a tripartite training model: recovery-oriented psychosis psychoeducation, caregiver self-care, and a set of skills informed by cognitive-behavioral therapy for psychosis (CBTp): communication, coping, and problem-solving skills, collectively known as the FIRST skills. The training modules were developed from previous iterations of the workshops and informed by feedback from past family trainees. We collaborated with a Family and Caregiver Advisory Board on training planning and additional customization of the original model. The board consists of 10 community members who each have a loved one with psychosis and a patient and family advocate of a large health care system.
All trainees received the 1-day core training, which introduced them to recovery-oriented psychoeducation and the FIRST skills by using didactics, demonstrations, and large-group discussion. The additional 3 days of intensive training provided more in-depth training in the FIRST skills, including role play and discussion of application of these skills. Both courses were led by two of the authors (K.H., D.T.), who have extensive experience providing CBTp training for clinicians and have previously trained family members in CBTp skills.
Participants
The training was cosponsored by a private foundation and state funding and could therefore be provided free of charge. Promotional materials were disseminated to mental health advocacy organizations in Washington State and to outpatient and inpatient settings statewide and through word of mouth by our advisory board. Therefore, the recruitment strategy relied heavily on snowball sampling. To ensure equity in accessibility to the event, we provided assistance with lodging and travel by request. Eligibility for the training included self-identification as a family member or caregiver of an individual with a psychotic spectrum disorder and English fluency. The sample was nonrandom, because participants self-selected into the core 1-day training or the additional 3 days of training (4-day, “enhanced”) condition. Those who self-selected into the enhanced condition had expressed willingness to work with families in the future as a Psychosis REACH “family ambassador” by cofacilitating subsequent trainings. The aim of training family ambassadors is to provide future training that is grounded in the lived experience of natural supports and to support long-term sustainability by ensuring local support to coach REACH-trained families in skill application.
Survey and Measures
Trainees were asked to complete a REDCap-administered survey at three timepoints: 1 month prior to the training (pretraining), immediately following the training (posttraining), and 4 months after the training (follow-up). They received no financial compensation for pre- or posttraining surveys and received a $20 gift card by e-mail for completing the follow-up survey. The pretraining survey consisted of a questionnaire to establish demographic characteristics, psychiatric characteristics of their loved one (e.g., diagnosis, lifetime hospitalizations), relationship to the individual with psychosis, and their participation in their loved one’s care to date. The measures described below were included across all three timepoints.
The Experience of Caregiving Inventory (ECI) is a 66-item self-report measure that assesses the subjective positive and negative experiences of caregivers of individuals with a psychotic spectrum disorder (
17). Items are rated on a 0–4 scale. Higher ratings reflect either greater difficulty in caregiving (negative subscale) or greater positive caregiving experiences (positive subscale). Scores are aggregated into total negative and total positive scores. Because of the length of the measure, the ECI was administered at pretraining and follow-up only. The Psychosis Attitude Scale (PAS) is a 19-item measure used to assess attitudes toward individuals with a psychotic disorder (e.g., “People with psychosis need others to take care of most things for them”) (
18). Items are rated on a 7-point Likert scale with reverse coding on eight of the 19 items. Higher total scores represent more prosocial views of psychosis. The PAS, originally developed for evaluating attitudinal change among mental health professionals undergoing CBTp training, was adapted for family and caregivers in the Psychosis REACH program in an effort to ascertain whether the training affects family members’ conceptions about psychosis and its amenability to interventions. The Hospital Anxiety and Depression Scale (HADS) is a 14-item scale measuring anxiety and depressive symptoms in both clinical and nonclinical samples (
19). The Family Attitude Scale (FAS) is a 30-item measure assessing the frequency of hostility or emotional overinvolvement by caregivers (
20). The FAS has good convergent validity with lengthier measures of expressed emotion (
20). Responses are rated on a 5-point Likert scale, with higher scores indicating higher levels of burden or criticism in the home. Finally, in order to ascertain trainees’ perceived sense of mastery of CBTp-informed skills, we codeveloped a 12-item self-report inventory of the FIRST skills on a Likert comprehension scale, from 1, minimal, to 5, advanced. Brief definitions of each skill component (e.g., befriending) were provided to reduce the likelihood of a terminology confound.
Statistical Analysis
All analyses were completed with SPSS, version 26. A chi-square test of independence was used to evaluate whether persons who participated only in the 1-day training differed in gender from those who participated in the enhanced training. Because of small samples, a series of Fisher’s exact tests were used to subsequently investigate differences between training conditions on categories of race, education, and marital status. Longitudinal changes across the full sample were evaluated by using either a paired-sample t test when only two repeated measures were present (e.g., ECI) or a one-way repeated-measures analysis of variance (ANOVA) for measures present across all three timepoints (PAS, HADS, FAS, and CBTp skills). Statistically significant omnibus F tests indicated that a measure changed over time within the full sample, which was further examined with post hoc Bonferroni-adjusted comparisons to evaluate the relationship of survey responses between timepoints.
We also evaluated whether a significant degree of change occurred over time between trainees who received the 1-day core training versus the enhanced training. Two-way mixed ANOVAs were conducted with training condition, time (0, pretraining; 1, posttraining; and 2, 4-month follow-up), and the training condition × time interactions entered into the model. Significant training condition × time interactions were the primary test of interest in these models, because they would indicate that the two training groups differed in the amount of change over time. For all analyses, the alpha level was set at p<0.05. Effect sizes were calculated by using partial eta squared. Because there is no consensus on how effect sizes should be interpreted in a sample of caregivers trained in CBTp-informed skills, we adopted Cohen’s heuristic of 0.01, 0.06, and 0.14 partial eta squared values corresponding to small, medium, and large magnitudes, respectively (
21).
Results
Trainee Characteristics
A total of 276 individuals registered for the training. Throughout the registration period, 93 individuals were excluded from further analysis because of cancelled registration (N=39), not meeting eligibility criteria (N=19), or registering but not attending the training (N=35). In total, 183 family members and other caregivers (referred to below as caregivers) attended the 1-day core REACH training, of whom 92% (N=168) consented to survey participation. Twenty-nine caregivers participated in the enhanced training, all of whom consented to participation.
Trainees’ characteristics are presented in
Table 1. Trainees ranged in age from 15 to 86 (mean age=56.2), and most were female (74%), married (62%), and White (90%) and had more than 12 years of education (79%). No differences were found between conditions across any of the demographic variables. Trainees were mostly a parent of an individual with psychosis (76%), and most reported that their loved one’s principal diagnosis was a schizophrenia spectrum disorder (69%), followed by mood disorders with psychotic features (22%) (
Table 2). Caregivers reported that their loved one had experienced a median of three lifetime hospitalizations. The average duration of illness for loved ones was 7.95 years but varied considerably (range=0–55, SD=8.45).
Comparison of 1-Day and Enhanced Training Participants
Descriptive statistics of outcome measures across all times points and each training group are presented in
Table 3. Mixed ANOVAs evaluating group differences in these scores across time are presented in
Table 4.
Caregiving experiences.
There was a significant condition × time interaction and a significant main effect of time for the ECI total negative score from pretraining to follow-up, indicating that participants in both training conditions had reduced total negative scores at follow-up and that trainees in the enhanced condition experienced greater reductions in negative caregiving appraisals (see figure in the
online supplement to this article). There was a significant main effect of condition on total positive scores, such that trainees in the enhanced training condition reported more positive appraisals of their experiences with their loved one across timepoints. Main effects of time were not observed, nor was a significant change in total positive scores for the full sample observed (see figure in
online supplement).
Psychosis attitudes.
Significant main effects of time and condition were observed from pre- to posttraining and from pretraining to follow-up, with a significant group × time interaction from pre- to posttraining only (see figure in
online supplement). Compared with pretraining, caregivers in both training conditions had improved prosocial attitudes toward individuals with psychosis at posttraining and follow-up, with a greater degree of improvement at posttraining for those in the enhanced training.
Psychiatric symptoms and expressed emotion.
Significant main effects of time were observed from pre- to posttraining and pretraining to follow-up on both the depression and anxiety subscales of the HADS. No significant condition or condition × time interactions were observed on either subscale. Caregivers in both training groups reported less depression and anxiety symptoms at posttraining and follow-up, with no significant differences between training conditions. A similar pattern of findings was observed on the FAS for expressed emotion (see figure in
online supplement).
Mastery of CBT-informed skills.
All five subscales assessing mastery of CBT-informed skills (forming a relationship, inquiring curiously, reviewing the information, skill building, and trying out the skill) showed significant main effects of time and condition from pre- to posttraining. Participants in both conditions demonstrated significantly higher skill ratings at posttraining. At both pre- and posttraining, participants in enhanced training had higher skills than participants in the 1-day training. Significant main effects for time were also seen for all five mastery subscales at pretraining versus follow-up, indicating that attendees maintained higher skill ratings up to 4 months after training ended (see figure in
online supplement). No significant condition × time interactions were observed, indicating a comparable skill retention over time across both groups.
Effect sizes are reported in
Table 4. In brief, all between-condition and condition × time effect sizes were small to medium (all partial η
2<0.08), except for the main effects of training condition, which were large for the PAS and the forming a relationship subscale for mastery of CBT-informed skills (partial η
2=0.13 to 0.14). Effect sizes reflecting full-sample change over time were large at both posttraining and follow-up, compared with baseline, for the total negative scores of the ECI, PAS, FAS, and all five subscales reflecting mastery of CBT-informed skills (partial η
2=0.17 to 0.59). Effect sizes reflecting full-sample change over time were smaller for the depression and anxiety subscales of the HADS measure and for the total positive score of the ECI (partial η
2=0.00 to 0.11)
Discussion
Despite decades of research supporting the benefits of FIp to both the individual with psychosis and the family, family interventions, particularly those that focus on CBT-informed skills, have poorly penetrated community mental health care in the United States. Training families outside the clinic may help remediate the inaccessibility of clinician-delivered FIp. We were interested in evaluating the extent to which Psychosis REACH, a tripartite training consisting of recovery-oriented psychosis psychoeducation, caregiver self-care training, and CBTp-informed skills training can affect trainees’ perceptions of their own mental health, psychosis itself, and the interpersonal dynamics with their loved one. In addition, we offered both a 1-day training and an additional 3 days of skill rehearsal (enhanced training) to attempt to explore the dose-response relationship and to prepare for future training cofacilitated by Psychosis REACH family ambassadors.
Our data suggest that the 1-day training was beneficial to trainees and that the benefits persisted at 4-month follow-up. Posttraining and 4 months later, the full training group reported reductions in all negatively valanced dimensions of caregiving, as well as in expressed emotion. This finding has potential implications for the health and well-being of their loved ones with psychosis, given the robust evidence that reduced stress and expressed emotion can lessen the risk of relapse and hospitalization. In addition, posttraining and at 4-month follow-up, trainees endorsed more prosocial attitudes about psychosis as well as reductions in their own symptoms. Effect sizes ranged by outcome, with the largest effect sizes observed for the ECI negative scale, PAS, FAS, and the CBTp skills. We observed significant differences between the training groups; however, effect sizes were small, with the exception of the ECI negative scale, for which we observed a medium effect size for the condition × time effect.
This study chronicled the implementation of an extramural training that addresses psychosis psychoeducation, caregiver self-care, and CBTp-informed caregiving skills for a group that is underserved in clinical settings. Although initial findings are promising, we are mindful of the limitation of a nonrandom sample with no control group. We encourage a randomized controlled trial with a larger and more diverse sample assessing the effects of the Psychosis REACH training on both the trainee and the loved one. The majority of our trainees identified as White, well-educated mothers of a person with a schizophrenia spectrum disorder that had been diagnosed within the past 8 years. The applicability of the intervention to a more racially, relationally, and educationally diverse group of natural supports is thus sorely needed. In addition, future research should explore the extent to which adaptations may be indicated for those whose loved ones have experienced longer durations of illness. Future research should look into both clinical and implementation outcomes, such as acceptability, fidelity, cost, and longer-term effects on the trainee, the family dynamic, and the loved one with psychosis. In addition, more information about skill acquisition can help clarify whether trainees are in fact engaging in more skillful behavior. Future training cohorts will have the opportunity for FIRST skill competency assessment with the advent of a newly constructed tool (
22). Finally, we are currently piloting the second phase of Psychosis REACH implementation, in which the previously trained family ambassadors work with new Psychosis REACH trainees to ground the training in lived experience and to support longitudinal skills coaching. These data will help inform the viability of partnering with family peers to support local sustainment of Psychosis REACH.
Conclusions
Psychosis REACH is the first extramural FIp training in the United States to teach families CBT skills that apply to their own self-care and to their loved ones with psychosis. Psychosis REACH can help fill a gap in U.S. mental health services by providing direct-to-family training in psychosis education, caregiver self-care, and CBTp-informed skills. Given the dearth of FIp and CBTp in mental health services in the United States, short-term, intensive extramural training, such as Psychosis REACH, has intuitive appeal as a means of surmounting the barriers that have plagued family interventions.