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. Author manuscript; available in PMC: 2021 Sep 1.
Published in final edited form as: Psychiatry Res. 2020 Jul 10;291:113286. doi: 10.1016/j.psychres.2020.113286

Understanding Differences in Family Engagement and Provider Outreach in Washington’s New Journeys First-Episode Psychosis Program.

Oladunni Oluwoye 1,2,*, Bryony Stokes 1, Bryan Stiles 3, Maria Monroe-DeVita 2,4, Michael G McDonell 1,2
PMCID: PMC7484037  NIHMSID: NIHMS1611631  PMID: 32763547

Abstract

The present study examined clinician outreach efforts to families and family engagement; and predictors of engagement in a coordinated specialty care (CSC) for first episode psychosis. From 2015 to 2019, 211 clients experiencing their first episode psychosis and their family members received services from New Journeys, a network of CSC programs in the United States. Analyses examined the association between race/ethnicity, insurance type, referral source, housing stability, and outreach efforts and family attendance. Overall, 70% of client family members attended at least one psychoeducation appointment and in the first month of treatment 40% of family members attended family psychoeducation. Outreach efforts including phone attempts (β=1.09; p=0.02) and phone contact (β=1.10; p=0.02) were significantly higher for Black families relative to White families; whereas Black families were scheduled less often for a family psychoeducation (β=−0.28; p=0.02) compared to Whites families. Significant differences in family attendance based on insurance type were also found (p<0.01). Referral source and housing stability were not significant predictors of outreach or attendance. These findings suggest that alternative engagement efforts that extend beyond in-person contact may be needed to continuously engage families, specifically Black families and those with public and no insurance.

Keywords: Coordinated specialty care, Family engagement, First episode psychosis, Psychoeducation, Racial disparities, Social determinants

1. Introduction

The majority of individuals experiencing their first episode of psychosis (FEP) reside with a family member or loved one (Dixon et al., 2015; Stowkowy et al., 2012). As such, family members or loved ones’ of individuals with FEP have a key role in providing support and facilitating care (Addington et al., 2005; Conus et al., 2010; Marino et al., 2015). Pathways to care for individuals experiencing FEP are often effected by the engagement of family members treatment (Compton, 2005; Compton et al., 2006; Dixon et al., 2009; Marino et al., 2015). Prior to care, lack of family involvement has been associated with a longer duration of untreated psychosis (DUP) and quality of life during treatment (Commander et al., 1999; Compton, 2005; Lucksted et al., 2015, 2015; Morgan et al., 2006; Oluwoye et al., 2020).

Given the important role of family members, coordinated specialty care (CSC) programs for FEP in the United States (US) include individual or group family psychoeducation (Wright et al., 2019). There is robust evidence demonstrating that family psychoeducation for individuals diagnosed with a schizophrenia-spectrum disorders, delivered for a duration of six to nine months with a least four sessions (Dixon et al., 2009), is associated with improved understanding of diagnosis, stress management, and problem solving by providing education and support to family members (Dixon et al., 2000; Kreyenbuhl et al., 2009). Despite, the proven effectiveness of family psychoeducation, recent studies have demonstrated difficulties engaging family members. For instance, results from the Recovery After An Initial Schizophrenia Episode - Early Treatment Program (RAISE-ETP) revealed that 46% of families attended 5 or more sessions in the first year of treatment and Black families were significantly less likely to attend sessions than White families (Glynn et al., 2018; Oluwoye et al., 2018).

Most research on family members of those experiencing their first episode of psychosis has focused on understanding pathways to care and attendance (Drapalski et al., 2018; Oluwoye et al., 2019a), yet, there few studies have pointed to understanding what predicts family engagement in psychoeducation. One of the few studies found that client’s race, housing stability, symptoms were associated with whether family members attended five or more family psychoeducation appointments (Glynn et al., 2018). To the authors knowledge there are no studies that have explored clinician outreach to family members in CSC programs in the US. Thus, the present study sought to characterize clinician outreach (i.e., phone attempts, phone contact, scheduled appointments) and attendance of family psychoeducation. We also investigated whether client characteristics and social determinants predictors of family engagement across 24 months of CSC treatment.

2. Methods

2.1. Participants and Setting

From January 2015 to December 2019, 211 clients were eligible to receive services from New Journeys in Washington State. New Journeys is a CSC program that provides individual resilience therapy, family psychoeducation, supported education and employment, medication management, peer support, and case management. Additional details about the New Journeys treatment model and program characteristics can be found elsewhere (Oluwoye et al., 2019b). Clients were eligible to receive services if they were between 15–40 years of age, meet Structured Clinical Interview for Diagnostic and Statistical Manual of Mental Disorders-5, Clinician Version (SCID-5-CV) criteria for schizophrenia-spectrum disorder and other psychotic disorders including delusion disorder, experienced psychotic symptoms for longer than 1 week and less than 2 years, and had been on antipsychotic medications for less than 6 months (First et al., 2015).

2.2. Measures

Service utilization data were collected by New Journeys’ clinicians to monitor engagement in the CSC program. Data on outreach attempts was defined by the number of phone attempts and the number of phone contacts between the clinician and family member. The number of scheduled family psychoeducation appointments, and the number of attended family psychoeducation appointment were collected by clinicians each month. Clinicians were asked to respond ‘yes’ or ‘no’ to “was a meeting scheduled with family member(s)?” and “was the meeting attended by family member(s)?” Follow up questions to ‘yes’ responses were “how many family psychoeducation appointments were scheduled?” and “how many family psychoeducation appointments were attended?”

Clients self-reported race and ethnicity at intake, which were categorized into White, Latinx, Black, and Other. Clients who self-reported as Other included clients who self-identified as Multiracial, Asian, Alaska Native, and Pacific Islander. Referral source was captured at intake and originated from inpatient, outpatient, family member, medical provider, and other (i.e., school, social services, justice system). Housing stability was captured at intake and categorized as stable and unstable. Unstable housing included temporary, unstable, homeless, and institutional. Health insurance was captured at intake and categorized as private, public, and uninsured. DUP was also captured at intake and defined as the period of time between the first expression of psychotic symptoms and the first treatment for these symptoms.

2.3. Statistical Analyses

We conducted descriptive analyses on client demographics and family member service utilization. Percentages and means were calculated to describe family engagement during 24-months. Separate generalized estimating equations (GEE) were performed to assess differences in phone attempts, phone contact, scheduled appointments, and attended appointments by race/ethnicity (White [reference group], Latinx, Black, Other), referral source (outpatient [reference group], inpatient, family, medical provider, other), health insurance (private [reference], public, uninsured), and housing stability (stable [reference], unstable) across 24 months controlling for client age and DUP. Unstandardized regression coefficients are presented with 95% confidence intervals (CI). Statistical significance was set at p < 0.05. All statistical analyses were conducted using SPSS 26.

3. Results

3.1. Client and family characteristics

Ninety (43%) clients self-identified as White, 75 (36%) as Latinx, 20 (9%) as Black, and 20 (12%) as member of another racial/ethnic group. A total of 153 (73%) clients were male, 53 (25%) were female, and 5 (2%) identified as another gender. The mean age of clients was 20.11 years. A total of 165 (78%) clients and their families had public insurance, 31 (15%) had private insurance, and 14 (7%) were uninsured. At intake 176 clients reported stable housing (83%) and resided with a family member (n = 185; 88%). Of those who resided with a family member, 112 (61%) lived with their parents, while the remaining reported living with siblings, grandparents, partner, or with other extended family (i.e., aunt, uncle, cousins). The majority of families were referred from outpatient mental health services (n = 112; 53%), followed by 54 (25%) referred from inpatient mental health services, 17 (8%) from family self-referral, 14 (7%) from medical services, and 14 (7%) from other services.

3.2. Outreach to clients’ family members and attendance in family psychoeducation

The average number of phone attempts made to engage family members across 24-months was 8.20 (SD = 14.39) and the average number of contacts made from phone attempts was 6.74 (SD = 14.89). Across 24-months the success rate of contact made by phone was 82.2%. The mean number of monthly phone attempts made to family members was 3.21 (SD = 4.33) and the mean number of contacts from monthly phone attempts was 2.98 (SD = 4.34).

Approximately 70% (n = 146) of clients had a family member engaged in at least one family psychoeducation appointment at any time during 24-month treatment period. Of all clients enrolled in New Journeys, 83 (39%) of clients’ family members were initially engaged in family psychoeducation during the first month of treatment and the highest rate of family engagement (45%) occurred during month three (Figure 1). Figure 1 displays family engagement across 24-months based on clients’ active status in treatment. Of the families that were scheduled at least one appointment, an average of 10 family psychoeducation appointments (M = 9.56; SD = 8.86) were attended across 24 months.

Fig 1. Overall family engagement in family psychoeducation in New Journeys across 24 months.

Fig 1.

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*Percentages are based on the number of family members scheduled for or attended family psychoeducation over the number of active clients’ each month.

3.3. Differences in family outreach and engagement

Clinicians made a significantly higher number of phone attempts (β = 1.09; CI: 0.16, 2.02; p = 0.02) and subsequent phone contacts (β = 1.10; CI: 0.16, 2.04; p = 0.02) with Black families compared to White families across 24 months. Yet, Black families were scheduled for a significantly lower number of family psychoeducation appointments (β = −0.28; CI: −0.53, −0.03; p = 0.02) compared to White families across 24 months. There were no significant differences between racial/ethnic groups in attending family psychoeducation appointments throughout treatment.

There were no differences in the number of phone attempts or phone contacts with family members based on clients’ insurance type. Results indicated that families with public insurance (β = −0.31; CI: −0.54, −0.09; p = 0.005) and those who were uninsured (β = −0.44; CI: −0.84, −0.41; p = 0.03) had a significantly lower number of family psychoeducation appointments scheduled compared to families with private insurance across 24 months. Further, families with public insurance (β = −0.29; CI: −0.49, −.09; p = 0.004) and those who were uninsured (β = −0.40; CI: −0.77, −0.44; p = 0.028) attended a significantly lower number of family psychoeducation appointments compared to families with private insurance across 24 months.

There were no differences in family outreach (i.e., number of phone attempts, phone contact, scheduled appointments) and attending family psychoeducation appointments based on referral source and clients’ housing stability.

4. Discussion

The goal of the present study was to examine outreach efforts to family members and family engagement in family psychoeducation over time, and to examine determinants of engagement with CSC family psychoeducation services. The results indicated that clinicians were able to successfully make contact with family members by phone approximately 82% of the time. Findings also revealed that 70% of families attended at least one family psychoeducation appointment over the course of 24 months. As displayed in Figure 1, less than 50% of family members participated in family psychoeducation in any given month. Although the majority of findings documenting family engagement have derived from randomized trials (Drapalski et al., 2018; Glynn et al., 2018; Oluwoye et al., 2018), these findings build upon these studies by highlighting clinician outreach efforts and family engagement in community-based CSC programs.

Regarding outreach efforts, CSC clinicians made significantly more phone attempts and phone contact with Black families as an effort to continuously engage families. Previous studies have found that Black families were less likely to engage in CSC programs (Oluwoye et al., 2018), while the findings presented in this paper suggest that Black families communicate with CSC clinicians by phone more often than White families. Although, clinicians made a significantly greater number of phone attempts and subsequently reported a higher phone contact with Black families, they were scheduled for appointments at a lower rate than Whites. Prior studies have found that inflexible program operational hours, other childcare needs, conflicting work schedules and distance impede in-person attendance of family psychoeducation appointments (Eassom et al., 2014; Lucksted et al., 2016; Oluwoye et al., 2019a). Given that family members may be more receptive to phone contact than in-person appointments, more flexible strategies may be needed, and be especially helpful for Black families. For example, the use of mobile devices or online platforms for family psychoeducation may serve as an alternative method of delivery for family psychoeducation (Rotondi et al., 2010; Sin and Norman, 2013). Recent studies have pointed to racial/ethnic differences in family attendance (Glynn et al., 2018; Oluwoye et al., 2018), which were not found in the current study after adjusting for covariates. While not included in this paper, unadjusted findings suggested that Black families attended less appointments than Whites (β = −2.51; CI: −0.50, −0.01; p = 0.04). Based on these findings further exploration to understand reasons for racial/ethnic differences in attendance of family psychoeducation and the influence of other possible determinants such as structural racism, bias, and cultural factors on clinician practices and lack of engagement are warranted.

Socioeconomic determinants such as having public health insurance or no insurance are associated with the underutilization of FEP services (O’Brien et al., 2009), which is consistent with findings reported in this paper. However, considering that previous literature has linked various social determinants with family engagement in mental health services (Glynn et al., 2018; Haine-Schlagel and Walsh, 2015), it is surprising that both housing stability and referral sources were not significant predictors for outreach efforts and family attendance. The lack of findings for these neighborhood (i.e., housing) and system (i.e., referral source) determinants may be due to the distribution of responses: 83% of clients resided in housing and 53% of families were referred from outpatient mental health clinicians.

Several limitations deserve to be noted when interpreting these findings. Due to the nature of data collected from the New Journeys evaluation, data was not collected directly from family member which limited the ability to examine additional factors and mechanisms associated with family engagement. Further, reasons for why family members may not have been scheduled a family psychoeducation appointment are unknown; a plausible reason could be that the client did not want the family members involved in CSC treatment. However, this may not account for 55% of family members who did not attend a family psychoeducation appointment in the first month. While there are ongoing studies aimed at improving family engagement in CSC programs, additional efforts (e.g., extended outreach, earlier support services for families, coordinated linkage programs) are needed to improve the family member experiences prior to entry into CSC programs. Engagement was defined as phone contact and attendance whereas prior studies have exclusively captured engagement by attendance. It is key for future studies to have a consistent definition for engagement that includes communication with families using various forms on contact (e.g., phone, email, in-person). It is also recommended that CSC programs document topics covered within psychoeducation session to gain further insight as to what sessions have been most beneficial for families. Given the of number racial/ethnic minorities, caution is warranted when interrupting these preliminary findings that may not be generalizable to other CSC programs, particularly programs that primarily serve minority populations.

In light of these limitations, the present study builds upon previous research on the engagement of client’s family members in CSC programs and the challenges of engaging families. There are continued efforts to improve family engagement across CSC programs with an emphasis on understanding and improving family engagement among Black families. Additional research focused on understanding what engagement strategies work of whom, examining organizational factors that impact engagement, and alternative strategies that incorporate novel technologies that could potentially improve the delivery of family psychoeducation are needed.

Table 1.

Race/ethnicity, housing stability, and insurance type differences in family engagement (Beta’s, Confidence Intervals, and P values)

Characteristics Phone Attempts Phone Contact Scheduled Appointments Attended Appointments
β 95% CI p value β 95% CI p value B 95% CI p value B 95% CI p value
Race/Ethnicity*
 Latinx −0.15 −0.46, 0.15 0.50 −0.27 −0.54, 0.11 0.19 0.09 −0.12, 0.31 0.41 0.12 −0.09, 0.34 0.25
 Black 1.03 0.11, 1.98 0.02 1.03 0.10, 1.96 0.02 −0.28 −0.53, −0.03 0.02 −0.15 −0.43, 0.11 0.25
 Other race/ethnicity 0.14 −0.28, 0.57 0.51 0.09 −0.31, 0.49 0.75 −0.19 −0.57, 0.17 0.29 −0.21 −0.59, 0.16 0.27
Referral Sources$
 Inpatient 0.12 −0.22, 0.47 0.49 0.18 −0.17, 0.53 0.32 0.71 −0.14, 0.28 0.51 0.04 −0.16, 0.24 0.69
 Family 0.53 −0.20, 1.26 0.15 0.65 −0.08, 1.39 0.08 −0.24 −0.64, 0.14 0.21 −0.22 −0.62, 0.17 0.27
 Medical Provider 0.25 −0.32, 0.82 0.38 0.31 −0.23, 0.86 0.26 0.05 −0.26, 0.37 0.72 0.03 −0.25, 0.32 0.83
 Other 0.49 −0.75, 1.74 0.43 0.62 −0.54, 1.80 0.29 −0.31 −0.81, 0.19 0.22 −0.27 −0.76, 0.21 0.26
Housing Stability^
 Unstable −0.10 −0.47, 0.26 0.57 −0.09 −0.44, 0.24 0.57 −0.18 −0.47, 0.10 0.21 −0.12 −0.39, 0.13 0.34
Insurance Type~
 Public 0.03 −0.30, 0.38 0.83 0.08 −0.27, 0.44 0.63 −0.35 −0.54, −0.17 <0.01 −0.32 −0.54, −0.10 0.01
 Uninsured 0.63 −0.15, 1.43 0.11 0.56 −0.25, 1.38 0.17 −0.52 −0.94, −0.14 0.01 −0.48 −0.86, −0.10 <0.01
Covariates
 DUP 0.01 −0.01, 0.01 0.87 0.01 −0.01, 0.01 0.37 0.01 0.01–0.01 0.18 0.01 −0.01–0.01 0.39
 Client Age −0.01 −0.06, 0.02 0.48 −0.01 −0.05, 0.31 0.54 −0.02 −0.05–0.01 0.99 −0.02 −0.04–0.01 0.06
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*

White is reference group;

$

Outpatient referral is reference group;

^

Stable housing is reference group;

~

Private insurance is reference group

Highlights.

  • 70% of family members attended at least one family psychoeducation appointment across 24-months of coordinated specialty care treatment

  • 40% of family members attended the first month of family psychoeducation

  • Clinicians made a significantly higher number of outreach efforts and scheduled a significantly lower number of family psychoeducation appointments for Black families compared to White families

  • Families with no insurance or public insurance attended a significantly lower number of family psychoeducation appointments compared to those with private insurance.

Acknowledgements

We would like to thank our clinical teams within the New Journeys Network that deliver early intervention services for individuals experiencing their first episode of psychosis and collect data that helps inform the New Journeys model.

Role of the funding source

This work was supported in part by the National Institute of Mental Health (K01MH117457). The content is solely the responsibility of the authors and does not necessarily represent the official views of the funding agency.

Footnotes

Publisher's Disclaimer: This is a PDF file of an unedited manuscript that has been accepted for publication. As a service to our customers we are providing this early version of the manuscript. The manuscript will undergo copyediting, typesetting, and review of the resulting proof before it is published in its final form. Please note that during the production process errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal pertain.

Conflict of interest

There is no conflict of interest concerning this manuscript for any of the authors.

Disclosures

The authors have no disclosures to report.

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