Skip to main content

Abstract

Objective:

Little is known about clients’ preferences for family involvement and subsequent family contact in naturalistic, community-based coordinated specialty care (CSC) settings. The study’s primary goal was to characterize clients’ preferences and longitudinal patterns of family contact with providers across the OnTrackNY network in New York.

Methods:

Clinical administrative data collected at 3-month intervals and spanning 21 OnTrackNY CSC sites were used to analyze the preferences of 761 clients at baseline (unconditional involvement, conditional involvement, or no involvement) and patterns of family contact with program staff (always, sometimes, never, or early discharge) and their correlates during the initial 12-month service period. Data from clients discharged before 12 months were included for comparison.

Results:

At baseline, most clients requested some form of family involvement (unconditional, 59%; conditional, 35%; and none, 6%). Within each 3-month assessment period, rates of family contact ranged from 73% to 84%. Variables associated with both client preferences and contact patterns included baseline insurance status, housing status, race, frequency of family contact, and employment. Clients’ preferences for no or conditional family involvement were associated with higher rates of early discharge (i.e., before 1 year).

Conclusions:

Structuring family involvement around clients’ preferences did not appear to negatively affect family contact, and for some clients, it seemed to bolster such contact. Additional mixed-methods research is needed to deepen the understanding of the contexts and reasoning underlying both client preferences for family involvement and subsequent levels of family contact.

HIGHLIGHTS

The overwhelming majority of clients in a New York coordinated specialty care program for individuals with early psychosis preferred at least some degree of family involvement, and family contact rates were high in the first year of treatment.
Older clients with greater independence preferred less family involvement.
Contact with program staff was lower for family members of African American clients and of clients who were uninsured or receiving public insurance.
Client preferences for family involvement were significantly associated with both subsequent family contact and early client discharge (before 1 year of service).
Family members are a major source of emotional and material support for individuals with psychotic disorders across the life span (15). For example, the Clinical Antipsychotic Trials of Intervention Effectiveness trial found that nearly half of participants with an average 8-year illness duration lived with family members (6). Families are often the first to notice early signs and symptoms (7) and play a pivotal role in initial pathways to care for youths with first-episode psychosis (FEP) (812). Family support bolsters client outcomes, including improved functioning and reduced relapse rates (1317).
Family psychoeducation, which provides information, problem solving, and crisis intervention, is a robust evidence-based practice that improves outcomes and reduces relapse among adults with schizophrenia (1820). Despite the evidence supporting family participation in care, however, gaps exist in typical adult service settings, and both quantitative and qualitative studies have attested to numerous barriers to family involvement (2127). The full family psychoeducation model is virtually nonexistent in usual care settings, and even minimal family involvement in adult treatment settings rarely exceeds 20%–30% (2124). Dixon and colleagues developed a family involvement intervention, REcovery ORiented DEcision making for Relative’s Support (REORDER), premised on a structured dialogue concerning clients’ preferences for both the degree and the form of family involvement in their care, followed by a similar dialogue with family members (28, 29). Results from a randomized trial of REORDER indicated marked increases in family contact and improved indicators of recovery in the experimental group compared with enhanced treatment-as-usual services (including access to a skilled family therapist) (28). Trial findings strongly supported the idea that clients welcome family involvement if the nature of the involvement is under their control and if they are offered different choices.
In most early intervention in psychosis (EIP) services, family psychoeducation is the primary family treatment component (3033). Results from the OPUS trial, which integrated family psychoeducation, have shown that enrolled families reported higher satisfaction and lower caregiving burden (34); similarly, the Italian GET UP trial found that enrolled family members experienced decreased family burden and emotional distress and greater service satisfaction over 9 months (35). A recent meta-analysis found that family psychoeducation was highly effective in reducing relapse in FEP (13).
Although family psychoeducation is an effective intervention, it is unclear whether there are barriers to its uptake in FEP programs that are similar to those observed in programs for adults. Only a handful of EIP studies have reported family involvement rates. Internationally, the Italian GET UP trial found that 92% of families participated in at least one family psychoeducation session and that 73% received >10 (35). A Canadian study of individualized family intervention reported a 72% participation rate: of 71 families who declined involvement in the intervention, 27 were unavailable or out of area, 25 did not participate because of client preferences, eight preferred not to be involved, and 11 had missing data (36). A 2017 meta-analysis of family interventions in FEP reported that completion rates of family caregiver interventions across trials ranged from 42% to 100%, with longer interventions associated with higher dropout rates (37).
In the United States, the Recovery After an Initial Schizophrenia Episode Early Treatment Program (RAISE-ETP) trial found that monthly family participation in the first year of treatment fluctuated between 23% and 48% (38). A pilot evaluation of community-based coordinated specialty care (CSC) programs in Washington State found that 82% of clients’ families participated in at least one family psychoeducation session during the initial 12 months of treatment (39). The Arizona EPICENTER (Early Psychosis Intervention Center) implementation reported 22% participation in individual family psychoeducation and 44% in group family psychoeducation (40). Although approximately 285 CSC programs exist in the United States, we were unable to locate family involvement data for any other community-based programs.
The RAISE Connection Program (now OnTrackNY) integrates the client-driven, shared decision-making approach developed in REORDER (28, 4143). At program enrollment, a semistructured assessment tool and decision aids are used to collaboratively map out client preferences regarding family involvement. Involvement can take several forms, and clients can impose nuanced constraints, such as involvement in only some aspects of care. In the initial RAISE Connection Program, higher family involvement was associated with client age (≥18 years), more severe psychiatric symptoms, and absence of substance use (43). The effectiveness of client-driven family involvement in CSC has not been studied to date.
To better understand family involvement in CSC, we examined the participation of families and correlates of participation in the client preference–driven model implemented in OnTrackNY. Specific aims were to characterize clients’ family involvement preferences at enrollment and associated baseline variables, characterize family contact patterns with CSC teams over the initial 12 months of treatment and associated variables, and examine the relationship between clients’ preferences at enrollment and family contact patterns over 12 months of follow-up.

Methods

Research Design and Sample

We report on a prospective CSC cohort using administrative data from the OnTrackNY network, which encompasses 21 EIP programs in New York State (41, 44). Between October 2013 and December 2018, the network served approximately 1,350 individuals with FEP between the ages of 16 and 30 years with a recent-onset (<2 years) nonaffective psychotic disorder. Additional studies describe the development and implementation of the OnTrackNY network in detail (41, 42, 44). As noted above, the OnTrackNY model premises family involvement on the client preferences; at program entry, clients are asked about their preferences for family involvement, aided by several decision-making tools. Client-reported data are collected at admission and quarterly through standardized provider-reported admission, follow-up, and discharge data collection forms to improve care quality. All identifiable information is removed from the data sets, and the deidentified data are approved by the New York State Psychiatric Institute Institutional Review Board. This study included data from 761 participants who enrolled between August 2015 (when data collection for the main outcomes began) and December 2017, which allowed for each participant to be eligible for 1 year of follow-up.

Outcomes

The two target outcomes were client preferences regarding family involvement in their care, with three categorical options: no involvement, involvement with conditions (e.g., a client requests family involvement in some aspects of care but not others), or unconditional involvement. This information was collected at baseline. The second target outcome was family contact with the CSC team, defined as one or more contacts (including e-mail or phone exchanges and attending in person meetings or groups) between one or more family members and CSC team members during the preceding 3 months. This information was collected quarterly during follow-up.

Baseline Correlates

Analyses also included sociodemographic variables, family support system variables (e.g., client’s contact with family, living situation, identified designated support person, and homelessness), functioning and clinical status (e.g., hospitalization, medication adherence, time to first mental health contact after symptom onset, family involvement in the pathway to care, and substance use). A comprehensive list of these variables and their respective categories is shown in Table 1. (Additional information on variable structure is included in an online supplement to this article.)
TABLE 1. Baseline characteristics of 761 clients of a coordinated specialty care program for early psychosis, by preference regarding family involvement in treatment
 Preferred family involvement 
 None (N=45)Conditional (N=266)Unconditional (N=450) 
CharacteristicN%N%N%p
Demographic       
 Age (M±SD)23.0±3.0 21.6±3.2 20.8±3.2 <.001
 Gender      .018
  Female143182319120 
  Male31691826835779 
  Other0212<1 
 Race-ethnicity      .036
  White (non-Hispanic)1533943510824 
  Black (non-Hispanic)1329893416136 
  Hispanic1124632413831 
  Other6132084310 
 Insurance status      .027
  Uninsured49197235 
  Public25561114223352 
  Private14311164418040 
  Other24208143 
 Primary language      <.001
  English43962519438586 
  Spanish042368 
  Other24114286 
 Highest grade completed      .002
  Less than high school diploma920602313630 
  High school diploma or GED81849189220 
  Some college15331174418040 
  College graduate13294015429 
Family and support system       
 Current family contact with client      <.001
  Daily26622248542594 
  Weekly6143112194 
  Monthly or less10248361 
 Living situation      <.001
  With parents27602057739888 
  With other family (not parents)37176317 
  Alone51125982 
  Other1022197133 
 Lives with anyone40892419144298<.001
 Has support person28622419143897<.001
 Homeless1124218143<.001
Clinical       
 Ever hospitalized37822268538886.726
 N of prior hospitalizations (M±SD)1.7±1.3 1.7±1.1 1.5±1.0 .088
 Current prescription for antipsychotic      <.001
  Not medication adherent81854205412 
  Medication adherent23511596033174 
  Not prescribed613239204 
  Unknown81830114510 
 Days to first mental health contact after symptom onset (median and IQR)37.011.0–183.029.02.0–119.025.02.0–90.0.224
 Family involved in initial pathways to care referral chains21471656232673<.001
 Any substance use33731535822951.008
Functioninga       
 MIRECC-GAF social functioning      .223
  <4081831125212 
  40–6928621786727369 
  ≥70920562112428 
 MIRECC-GAF occupational functioning      .660
  <4031691666330167 
  40–691124742810523 
  ≥70372494410 
 MIRECC-GAF symptoms      .367
  < 4037822148137182 
  40–6981847187717 
  ≥700522<1 
 Employed at admission112453205512.006
Discharged within 1 year2249963613730.024
a
MIRECC-GAF, Mental Illness Research, Education, and Clinical Center Global Assessment of Functioning scale. Possible scores on each of the three subscales range from 0 to 100, with higher scores indicating better functioning.
The standardized clinical measure used was the Mental Illness Research, Education, and Clinical Center Global Assessment of Functioning (MIRECC-GAF) scale, which includes three subscales: symptoms (MIRECC-GAF symptoms), social functioning (MIRECC-GAF SF), and occupational functioning (MIRECC-GAF OF). The MIRECC-GAF OF scale has 10 anchor points, reflecting average level of functioning in the person’s primary role as worker, student, or homemaker during the 30 days before assessment. The MIRECC-GAF SF is similarly structured and considers social interactions, relationship quality and quantity, and interpersonal conflicts in the previous 30 days. The MIRECC-GAF symptoms scale captures patients’ worst level of functioning during the previous 30 days on the basis of suicidality, mood, anxiety, and psychotic symptoms. Subscales are scored from 0 to 100, with higher scores indicating better functioning.

Data Analysis

Analyses used data from a censored sample of OnTrackNY clients who were eligible to have received services for 12 months (N=761). To assess the associations between both primary outcomes (client’s family involvement preference at enrollment and family contact with teams over the initial 12 months of follow-up) and baseline variables, descriptive summaries of baseline measures were computed, stratified by baseline involvement preference (no involvement, conditional involvement, or unconditional involvement) and then by family contact pattern (always, mixed, never, or early discharge). The family contact patterns across 1 year of follow-up were characterized in the following way: “always” included those who had family contact in each of the quarterly data collection periods, “mixed” those who had contact in some periods and not in others, “never” those who never had contact, and “early discharge” included participants who disengaged from the program before completing 1 year. The descriptive summaries included proportions for categorical measures, means and SDs for normally distributed continuous measures, and medians and interquartile ranges for skewed continuous measures. Associations between groups and the baseline measures were assessed with chi-square tests, one-way analyses of variance, and Kruskal-Wallis tests, depending on the distribution of the baseline correlate.
All statistical tests were two-sided, with a significance level of 5%. Because of the novelty of the primary outcomes examined in this study and lack of previous research utilizing analogous data points, we conceptualized our analyses as exploratory and hypothesis generating, and we therefore did not employ tests for multiple comparisons. All analyses were run with SAS, version 9.4.

Results

Family Involvement Preferences and Correlates

At enrollment, 59% (N=450) of the 761 participants requested unconditional family involvement, 35% (N=266) involvement with conditions, and 6% (N=45) no involvement. Baseline variables examined in relation to these involvement preferences are reported in Table 1. Significant differences were noted in baseline family involvement preferences for family and support system measures, medication adherence, substance use, employment, and participation in secondary-postsecondary education. Compared with clients requesting conditional or unconditional involvement, clients in the no-involvement group were more likely to be older and employed and to have graduated from college; they also were less likely to have a designated support person and more likely to be homeless, live alone, or live with nonfamily members. Family member involvement in pathways to care was significantly less likely in the no-involvement group than in the other groups, but the groups did not differ in the time from symptom onset to first mental health contact. In general, metrics for the conditional-involvement group fell in between those for the unconditional-involvement and no-involvement groups. In addition, family involvement preference was significantly associated with early discharge, with a higher proportion of early discharges in the no-involvement group. Previous hospitalizations and GAF scores were not significantly associated with family involvement preference.

Family Contact With CSC Teams

In the study cohort, 67% (N=506) remained enrolled for 12 months. Rates of family contact with CSC teams significantly decreased over time: at 3, 6, 9, and 12 months, 84%, 78%, 74%, and 73%, respectively, of clients’ families had contact with the team (Cochran-Armitage z=4.90, N=761, p<0.001). Longitudinal family contact patterns were as follows: 42% of clients’ families had contact at least once every quarterly period (always, N=323), 3% had no contact at all follow-up points (never, N=22), 21% had a mixed pattern of family contact (mixed, N=161), and 34% disengaged from the program early (early discharge, N=255).
Group differences in baseline characteristics of families with three contact patterns and those with early discharge are reported in Table 2. Racial differences were marked: families of White (non-Hispanic) clients represented a third of those with continuous contact (always) and only 5% of those with no contact (never). Additional cross-tabulations showed that Black (non-Hispanic) race-ethnicity was significantly associated with insurance status (χ2=14.3, df=1, p=0.003) and criminal justice involvement (χ2=3.9, df=1, p=0.047). Age, gender, insurance status, current family contact, living situation, designation of a support person, homelessness, medication adherence, family involvement in pathways to care, and baseline employment all differed significantly across family contact patterns.
TABLE 2. Baseline characteristics of 761 clients of a coordinated specialty care program for early psychosis, by pattern of family contact with the program team in the first year
 Family contact pattern 
 Always (N=323)Mixed (N=161)Never (N=22)Early discharge (N=255) 
CharacteristicN%N%N%N%p
Demographic         
 Age (M±SD)20.7±3.3 21.9±3.0 22.5±2.6 21.3±3.3 <.001
 Gender        .021
  Female662053339415923 
  Male2567910666135919577 
  Other1<12101<1 
 Race-ethnicity        .004
  White (non-Hispanic)105333924157228 
  Black (non-Hispanic)9229684212559136 
  Hispanic942948307326325 
  Other321064292911 
 Insurance status        .014
  Uninsured10310629249 
  Public147468452125512649 
  Private1504660375239537 
  Other16574314104 
 Primary language        .533
  English2878914791188222789 
  Spanish1657415166 
  Other20674314114 
 Highest grade completed        .050
  Less than high school diploma1023227173147329 
  High school diploma or GED611933215235020 
  Some college1243880509419939 
  College graduate361121135233313 
Family and support system         
 Current family contact with client        <.001
  Daily2999313987167322188 
  Weekly19613829229 
  Monthly or less417441894 
 Living situation        .007
  With parents2899012980146419878 
  With other family (not parents)144128314229 
  Alone839629198 
  Other124117314166 
 Lives with anyone3159815294209123693.037
 Has support person3149714489156823492<.001
 Homeless9314929218.014
Clinical         
 Ever hospitalized2798614389198621082.297
 N of prior hospitalizations (M±SD)1.6±1.0 1.5±1.1 1.7 ±.9 1.5±1.0 .654
 Current prescription for antipsychotic        .009
  Not medication adherent421318114185220 
  Medication adherent2337212175146414557 
  Not prescribed1969629198 
  Unknown299138293915 
 Days to first mental health contact after symptom onset (median and IQR)25.03.0–92.031.0.0–119.520.0.0–70.030.04.5–102.5.419
 Family involved in initial pathways to care referral chains228719861115017569.044
 Any substance use178558050146414356.467
Functioninga         
 MIRECC-GAF social functioning        .096
  <4037121811153514 
  40–692106510867104615160 
  ≥707624352211506727 
 MIRECC-GAF occupational functioning        .028
  <402156710565104616866 
  40–69892839247325522 
  ≥7019617115233012 
 MIRECC-GAF symptoms        .018
  <402778612376177720580 
  40–69461437234184518 
  ≥700111552 
 Employed at admission391234216274015.7.029
a
MIRECC-GAF, Mental Illness Research, Education, and Clinical Center Global Assessment of Functioning scale. Possible scores on each of the three subscales range from 0 to 100, with higher scores indicating better functioning.
Clients with family members who were never in contact with the CSC team were more likely to be older, to be employed at baseline, and to have higher baseline occupational functioning than were clients whose family members had other contact patterns. Clients whose family members had continuous contact (always) were more likely to be younger, male, and living with their parents and to have higher symptom burden and markedly worse occupational functioning. Characteristics of those whose family members had a pattern of mixed contact generally fell in between those in the continuous-contact and no-contact groups, although they were typically much closer to the former.

Relationship Between Baseline Preferences and 12-Month Family Contact Pattern

A statistically significant association was detected between baseline client preferences and family contact patterns (Table 3). Nearly half of those specifying no involvement at baseline were discharged before 12 months. Conversely, families of clients who preferred unconditional involvement were most likely to have continuous contact (always) (48% vs. 37% and 18% in the conditional-involvement and no-involvement groups, respectively). However, for the conditional- and unconditional-involvement groups, the combined percentages of those whose families had continuous team contact and those whose families had mixed team contact were nearly equal (61% and 68%, respectively). Even among families of clients who had preferred unconditional involvement, a small proportion of families (1%) did not make contact at any point during the first year. Additionally, about a third (36%) of families of clients who expressed a preference for no involvement nevertheless had contact with the team during all or some quarterly assessment periods.
TABLE 3. Associations between clients’ preferences regarding family involvement in treatment and pattern of family contact with the program teama
 Family contact pattern
 AlwaysMixedNeverEarly discharge
Client preferenceN%N%N%N%
No involvement8188187162249
Conditional involvement97376424939636
Unconditional involvement2184889206113730
Total323421612122325534
a
Percentages are calculated for each row; associations between family contact patterns and client preference were statistically significant (omnibus χ2 of involvement preference × contact interaction pattern=48.15, df=6, p<0.001).

Discussion

We investigated client preferences at enrollment for family involvement and patterns of family contact over 12 months of follow-up across a large, community-based CSC network. Most clients preferred family involvement, but a significant subset (41%) requested conditional or no involvement. Almost all families were in contact with the CSC team at least some of the time during the first year of treatment. Both a preference for no family involvement and patterns of no family contact in the first year of treatment were more likely for older clients with higher probability of employment or occupational functioning and a greater likelihood of living alone or independently from parents. Black families were more likely to fall into the group with no contact or mixed contact. Rates of private insurance were nearly twice as high among clients whose families had continuous contact, compared with those whose families were never in contact with the CSC team.

Clinical Implications

A major contribution of this study is the reporting of data concerning client preferences for family involvement in one of the largest implementations of CSC in the United States. At baseline, a substantial number of clients requested family involvement—full involvement or with some conditions. Of these clients, the percentages whose families had either continuous contact or mixed contact with the CSC team in the first year were very similar (61% and 68%, respectively), suggesting that centering client preferences does not adversely affect family contact with the CSC team and may in fact increase it. Ultimately, assessing the comparative effectiveness of different strategies to involve families in services will be of considerable clinical importance to the field. Although the OnTrackNY statistics appear promising, limitations of the data used in both this study and other reports, as well as differences in both timescale and constructs measured, preclude our making meaningful comparisons among outcomes. Future research efforts should better delineate the kind, type, and circumstances of family contact; the conditions requested by clients and their rationales; and the impact of clients’ preferences on clients’ and family members’ interactions with EIP and CSC services.
Racial-ethnic differences in family contact with services have been noted in the literature (38, 4547). We found significant but attenuated differences in client preferences among racial-ethnic groups and more robust differences in actual family contact. Black participants were significantly more likely than those from other racial-ethnic groups to disengage from the program early, and their families were more likely to fall into the no-contact and mixed-contact groups, mirroring recent analyses of data from the RAISE NAVIGATE trial (38) Although these findings may be mediated or moderated by socioeconomic differences (4850), they foreground the importance of meeting the needs of clients and families from minority groups, who are at elevated risk for disengagement and premature discharge.
It is unsurprising that CSC clients who displayed signs of greater independence at baseline, as indicated by older age, higher likelihood of being employed, greater educational attainment, and greater likelihood of living independently, were more likely to prefer no or conditional family involvement. Similarly, we would expect less need for family involvement among clients with fewer needs—that is, those with higher occupational and social functioning, higher rate of employment, greater educational attainment, and less severe symptoms. More surprisingly, however, preferences for less family involvement were also predicted by public insurance, potentially a proxy for lower socioeconomic status, and by race (being Black vs. White). These findings suggest hidden subgroups in this cohort—one potentially reflecting greater client independence and lower needs and another reflecting a preference for less family involvement because of the additional barriers that socioeconomic disadvantage (and its intersections with race and cultural stigma) may present (4851). Future research may better identify these potential subgroups, because lack of family contact with services may reflect a logical outcome for low-needs clients, but it may also reflect evidence of disparities driven by socioeconomics or race for others.
The fact that nearly half of those who preferred no family involvement disengaged prior to 1 year may suggest that a preference for no family involvement is a red flag for potential disengagement; however, given the patterns described above, such a preference may also be driven by lower needs and higher functioning associated with “positive” early discharge resulting from a desire for a lower level of care (e.g., medication management only). A more nuanced understanding of variable lengths of engagement with EIP and CSC programs is important and will depend on identifying diverse latent groups and latent trajectories among clients.
A small subgroup of clients’ families had no contact with the CSC team; however, compared with family involvement in mainstream community mental health services (43, 52), family involvement across OnTrackNY was exceptionally high. Other CSC programs could learn from and replicate these practices. Although the data set for this study did not allow for investigation of preferences for family involvement in and family contact with group interventions, including the multifamily groups that are commonly implemented in EIP and CSC programs, such research could help explain how to best meet the needs of family members.

Limitations

The observational nature of our data does not allow causal inferences. Furthermore, the measures studied likely interacted in multiple and complex ways; however, small bivariate category sizes in our sample precluded more complex modeling of these relationships. Potentially important metrics were not available in the data set, including more comprehensive indicators of family socioeconomic status and acculturation, as well as perceived family conflict (21, 23). The only available family contact metric in the data set (any contact in the previous quarter) was imprecise and did not allow us to examine diverging contact patterns or to distinguish between deep and sustained versus more superficial involvement.
The first-person experience of involvement, both from client and family member perspectives, was also absent from this study, and future research would benefit from strategic use of mixed methods to deepen our understanding of client and family involvement decisions and their associated impact. Finally, preferences are dynamic rather than static, and measurement of changes in preferences over time is important. This study focused on preferences expressed during enrollment, which is both a limitation and a subject worthy of additional investigation in future studies.

Conclusions

Overall, we found that the overwhelming majority of clients preferred at least some degree of family involvement and that overall rates of family contact were high—in both cases, the percentages exceeded those identified for older clients with serious mental illness. Although the study was exploratory and observational, patterns of relationships among variables seemed to suggest that clients who had achieved greater independence from their families at baseline were more likely to prefer less family involvement and that their families were, in turn, less likely to be in contact with the CSC team over the initial year of treatment. We also found lower rates of contact for the families of African American clients and of clients who were uninsured or publicly (rather than privately) insured, suggesting potential racial and socioeconomic inequities in the capacity of families to become involved in services. Expanded research on how best to optimize involvement of the families of diverse clients remains a priority for the field.

Supplementary Material

File (appi.ps.202000241.ds001.pdf)

References

1.
Cloutier M, Aigbogun MS, Guerin A, et al: The economic burden of schizophrenia in the United States in 2013. J Clin Psychiatry 2016; 77:764–771
2.
Ramírez García JI, Chang CL, Young JS, et al: Family support predicts psychiatric medication usage among Mexican American individuals with schizophrenia. Soc Psychiatry Psychiatr Epidemiol 2006; 41:624–631
3.
Gutiérrez-Maldonado J, Caqueo-Urízar A, Kavanagh DJ: Burden of care and general health in families of patients with schizophrenia. Soc Psychiatry Psychiatr Epidemiol 2005; 40:899–904
4.
Hayes L, Hawthorne G, Farhall J, et al: Quality of life and social isolation among caregivers of adults with schizophrenia: policy and outcomes. Community Ment Health J 2015; 51:591–597
5.
Perlick DA, Rosenheck RA, Kaczynski R, et al: Components and correlates of family burden in schizophrenia. Psychiatr Serv 2006; 57:1117–1125
6.
Tsai J, Stroup TS, Rosenheck RA: Housing arrangements among a national sample of adults with chronic schizophrenia living in the United States: a descriptive study. J Comp Psychol 2011; 39:76–88
7.
Norman RM, Malla AK, Manchanda R, et al: Social support and three-year symptom and admission outcomes for first episode psychosis. Schizophr Res 2005; 80:227–234
8.
Cabassa LJ, Piscitelli S, Haselden M, et al: Understanding pathways to care of individuals entering a specialized early intervention service for first-episode psychosis. Psychiatr Serv 2018; 69:648–656
9.
Cocchi A, Meneghelli A, Erlicher A, et al: Patterns of referral in first-episode schizophrenia and ultra high-risk individuals: results from an early intervention program in Italy. Soc Psychiatry Psychiatr Epidemiol 2013; 48:1905–1916
10.
Del Vecchio V, Luciano M, Sampogna G, et al: The role of relatives in pathways to care of patients with a first episode of psychosis. Int J Soc Psychiatry 2015; 61:631–637
11.
Lucksted A, Stevenson J, Nossel I, et al: Family member engagement with early psychosis specialty care. Early Interv Psychiatry 2018; 12:922–927
12.
MacDonald K, Fainman-Adelman N, Anderson KK, et al: Pathways to mental health services for young people: a systematic review. Soc Psychiatry Psychiatr Epidemiol 2018; 53:1005–1038
13.
Camacho-Gomez M, Castellvi P: Effectiveness of family intervention for preventing relapse in first-episode psychosis until 24 months of follow-up: a systematic review with meta-analysis of randomized controlled trials. Schizophr Bull 2020; 46:98–109
14.
Haselden M, Corbeil T, Tang F, et al: Family involvement in psychiatric hospitalizations: associations with discharge planning and prompt follow-up care. Psychiatr Serv 2019; 70:860–866
15.
Lee G, Barrowclough C, Lobban F: Positive affect in the family environment protects against relapse in first-episode psychosis. Soc Psychiatry Psychiatr Epidemiol 2014; 49:367–376
16.
Norman RM, Windell D, Manchanda R, et al: Social support and functional outcomes in an early intervention program. Schizophr Res 2012; 140:37–40
17.
Pitschel-Walz G, Leucht S, Bäuml J, et al: The effect of family interventions on relapse and rehospitalization in schizophrenia: a meta-analysis. Schizophr Bull 2001; 27:73–92
18.
Lehman AF, Kreyenbuhl J, Buchanan RW, et al: The Schizophrenia Patient Outcomes Research Team (PORT): updated treatment recommendations 2003. Schizophr Bull 2004; 30:193–217
19.
Kuipers E, Yesufu-Udechuku A, Taylor C, et al: Management of psychosis and schizophrenia in adults: summary of updated NICE guidance. BMJ 2014; 348:g1173
20.
Gaebel W, Weinmann S, Sartorius N, et al: Schizophrenia practice guidelines: international survey and comparison. Br J Psychiatry 2005; 187:248–255
21.
Cohen AN, Drapalski AL, Glynn SM, et al: Preferences for family involvement in care among consumers with serious mental illness. Psychiatr Serv 2013; 64:257–263
22.
Drapalski A, Leith J, Dixon L: Involving families in the care of persons with schizophrenia and other serious mental illnesses: history, evidence, and recommendations. Clin Schizophr Relat Psychoses 2009; 3:39–49
23.
Murray-Swank A, Glynn S, Cohen AN, et al: Family contact, experience of family relationships, and views about family involvement in treatment among VA consumers with serious mental illness. J Rehabil Res Dev 2007; 44:801–811
24.
Landeweer E, Molewijk B, Hem MH, et al: Worlds apart? A scoping review addressing different stakeholder perspectives on barriers to family involvement in the care for persons with severe mental illness. BMC Health Serv Res 2017; 17:349–354
25.
Cohen AN, Glynn SM, Murray-Swank AB, et al: The Family Forum: directions for the implementation of family psychoeducation for severe mental illness. Psychiatr Serv 2008; 59:40–48
26.
Dausch BM, Cohen AN, Glynn S, et al: An intervention framework for family involvement in the care of persons with psychiatric illness: further guidance from Family Forum II. Am J Psychiatr Rehabil 2012; 15:5–25
27.
Eassom E, Giacco D, Dirik A, et al: Implementing family involvement in the treatment of patients with psychosis: a systematic review of facilitating and hindering factors. BMJ Open 2014; 4:e006108
28.
Dixon LB, Glynn SM, Cohen AN, et al: Outcomes of a brief program, REORDER, to promote consumer recovery and family involvement in care. Psychiatr Serv 2014; 65:116–120
29.
Gioia D, Autrey S, Drapalski AL, et al: Veterans’ views of a shared decision-making process: a qualitative substudy of REORDER. Am J Psychiatr Rehabil 2014; 17:348–364
30.
Addington DE, McKenzie E, Norman R, et al: Essential evidence-based components of first-episode psychosis services. Psychiatr Serv 2013; 64:452–457
31.
Bertolote J, McGorry P: Early intervention and recovery for young people with early psychosis: consensus statement. Br J Psychiatry Suppl 2005; 48:s116–s119
32.
Heinssen RK, Goldstein AB, Azrin ST: Evidence‐Based Treatments for First Episode Psychosis: Components of Coordinated Specialty Care. Bethesda, MD, National Institute of Mental Health, 2014
33.
Fusar-Poli P, McGorry PD, Kane JM: Improving outcomes of first-episode psychosis: an overview. World Psychiatry 2017; 16:251–265
34.
Jeppesen P, Petersen L, Thorup A, et al: Integrated treatment of first-episode psychosis: effect of treatment on family burden: OPUS trial. Br J Psychiatry Suppl 2005; 48:s85–s90
35.
Ruggeri M, Lasalvia A, Santonastaso P, et al: Family burden, emotional distress and service satisfaction in first episode psychosis: data from the GET UP Trial. Front Psychol 2017; 8:721
36.
Addington J, McCleery A, Addington D: Three-year outcome of family work in an early psychosis program. Schizophr Res 2005; 79:107–116
37.
Claxton M, Onwumere J, Fornells-Ambrojo M: Do family interventions improve outcomes in early psychosis? A systematic review and meta-analysis. Front Psychol 2017; 8:371
38.
Oluwoye O, Stiles B, Monroe-DeVita M, et al: Racial-ethnic disparities in first-episode psychosis treatment outcomes from the RAISE-ETP study. Psychiatr Serv 2018; 69:1138–1145
39.
Oluwoye O, Reneau H, Stokes B, et al: Preliminary evaluation of Washington State’s early intervention program for first-episode psychosis. Psychiatr Serv 2020; 71:228–235
40.
Breitborde NJ, Bell EK, Dawley D, et al: The Early Psychosis Intervention Center (EPICENTER): development and six-month outcomes of an American first-episode psychosis clinical service. BMC Psychiatry 2015; 15:266–271
41.
Bello I, Lee R, Malinovsky I, et al: OnTrackNY: the development of a coordinated specialty care program for individuals experiencing early psychosis. Psychiatr Serv 2017; 68:318–320
42.
Dixon LB, Goldman HH, Bennett ME, et al: Implementing coordinated specialty care for early psychosis: the RAISE Connection Program. Psychiatr Serv 2015; 66:691–698
43.
Drapalski AL, Piscitelli S, Lee RJ, et al: Family involvement in the clinical care of clients with first-episode psychosis in the RAISE Connection Program. Psychiatr Serv 2018; 69:358–361
44.
Mascayano F, Nossel I, Bello I, et al: Understanding the implementation of coordinated specialty care for early psychosis in New York state: a guide using the RE-AIM framework. Early Interv Psychiatry 2019; 13:715–719
45.
Islam Z, Rabiee F, Singh SP: Black and minority ethnic groups’ perception and experience of early intervention in psychosis services in the United Kingdom. J Cross Cult Psychol 2015; 46:737–753
46.
Snowden LR: Explaining mental health treatment disparities: ethnic and cultural differences in family involvement. Cult Med Psychiatry 2007; 31:389–402
47.
Rosenfarb IS, Bellack AS, Aziz N: Family interactions and the course of schizophrenia in African American and White patients. J Abnorm Psychol 2006; 115:112–120
48.
Berg AO, Aas M, Larsson S, et al: Childhood trauma mediates the association between ethnic minority status and more severe hallucinations in psychotic disorder. Psychol Med 2015; 45:133–142
49.
Jones N, Godzikovskaya J, Zhao Z, et al: Intersecting disadvantage: unpacking poor outcomes within early intervention in psychosis services. Early Interv Psychiatry 2019; 13:488–494
50.
Rosen C, Jones N, Longden E, et al: Exploring the intersections of trauma, structural adversity, and psychosis among a primarily African-American sample: a mixed-methods analysis. Front Psychiatry 2017; 8:57
51.
Maura J, Weisman de Mamani A: Mental health disparities, treatment engagement, and attrition among racial/ethnic minorities with severe mental illness: a review. J Clin Psychol Med Settings 2017; 24:187–210
52.
Resnick SG, Rosenheck RA, Dixon L, et al: Correlates of family contact with the mental health system: allocation of a scarce resource. Ment Health Serv Res 2005; 7:113–121

Information & Authors

Information

Published In

Go to Psychiatric Services
Go to Psychiatric Services
Psychiatric Services
Pages: 399 - 407
PubMed: 33530730

History

Received: 11 April 2020
Revision received: 18 June 2020
Accepted: 6 August 2020
Published online: 3 February 2021
Published in print: April 01, 2021

Keywords

  1. First-episode psychosis
  2. Family involvement
  3. OnTrackNY
  4. Coordinated specialty care

Authors

Details

Nev Jones, Ph.D. [email protected]
Department of Psychiatry and Behavioral Neurosciences, University of South Florida, Tampa (Jones); Division of Behavioral Health Services and Policies, New York State Psychiatric Institute, New York City (Basaraba, Piscitelli, Jewell, Nossel, Bello, Mascayano, Scodes, Marino, Wall, Dixon). Editor Emeritus Howard H. Goldman, M.D., Ph.D., served as decision editor on the manuscript.
Cale Basaraba, M.P.H.
Department of Psychiatry and Behavioral Neurosciences, University of South Florida, Tampa (Jones); Division of Behavioral Health Services and Policies, New York State Psychiatric Institute, New York City (Basaraba, Piscitelli, Jewell, Nossel, Bello, Mascayano, Scodes, Marino, Wall, Dixon). Editor Emeritus Howard H. Goldman, M.D., Ph.D., served as decision editor on the manuscript.
Sarah Piscitelli, M.A.
Department of Psychiatry and Behavioral Neurosciences, University of South Florida, Tampa (Jones); Division of Behavioral Health Services and Policies, New York State Psychiatric Institute, New York City (Basaraba, Piscitelli, Jewell, Nossel, Bello, Mascayano, Scodes, Marino, Wall, Dixon). Editor Emeritus Howard H. Goldman, M.D., Ph.D., served as decision editor on the manuscript.
Thomas Jewell, Ph.D.
Department of Psychiatry and Behavioral Neurosciences, University of South Florida, Tampa (Jones); Division of Behavioral Health Services and Policies, New York State Psychiatric Institute, New York City (Basaraba, Piscitelli, Jewell, Nossel, Bello, Mascayano, Scodes, Marino, Wall, Dixon). Editor Emeritus Howard H. Goldman, M.D., Ph.D., served as decision editor on the manuscript.
Ilana Nossel, M.D.
Department of Psychiatry and Behavioral Neurosciences, University of South Florida, Tampa (Jones); Division of Behavioral Health Services and Policies, New York State Psychiatric Institute, New York City (Basaraba, Piscitelli, Jewell, Nossel, Bello, Mascayano, Scodes, Marino, Wall, Dixon). Editor Emeritus Howard H. Goldman, M.D., Ph.D., served as decision editor on the manuscript.
Iruma Bello, Ph.D.
Department of Psychiatry and Behavioral Neurosciences, University of South Florida, Tampa (Jones); Division of Behavioral Health Services and Policies, New York State Psychiatric Institute, New York City (Basaraba, Piscitelli, Jewell, Nossel, Bello, Mascayano, Scodes, Marino, Wall, Dixon). Editor Emeritus Howard H. Goldman, M.D., Ph.D., served as decision editor on the manuscript.
Franco Mascayano, M.P.H.
Department of Psychiatry and Behavioral Neurosciences, University of South Florida, Tampa (Jones); Division of Behavioral Health Services and Policies, New York State Psychiatric Institute, New York City (Basaraba, Piscitelli, Jewell, Nossel, Bello, Mascayano, Scodes, Marino, Wall, Dixon). Editor Emeritus Howard H. Goldman, M.D., Ph.D., served as decision editor on the manuscript.
Jennifer Scodes, M.S.
Department of Psychiatry and Behavioral Neurosciences, University of South Florida, Tampa (Jones); Division of Behavioral Health Services and Policies, New York State Psychiatric Institute, New York City (Basaraba, Piscitelli, Jewell, Nossel, Bello, Mascayano, Scodes, Marino, Wall, Dixon). Editor Emeritus Howard H. Goldman, M.D., Ph.D., served as decision editor on the manuscript.
Leslie Marino, M.D.
Department of Psychiatry and Behavioral Neurosciences, University of South Florida, Tampa (Jones); Division of Behavioral Health Services and Policies, New York State Psychiatric Institute, New York City (Basaraba, Piscitelli, Jewell, Nossel, Bello, Mascayano, Scodes, Marino, Wall, Dixon). Editor Emeritus Howard H. Goldman, M.D., Ph.D., served as decision editor on the manuscript.
Melanie Wall, Ph.D.
Department of Psychiatry and Behavioral Neurosciences, University of South Florida, Tampa (Jones); Division of Behavioral Health Services and Policies, New York State Psychiatric Institute, New York City (Basaraba, Piscitelli, Jewell, Nossel, Bello, Mascayano, Scodes, Marino, Wall, Dixon). Editor Emeritus Howard H. Goldman, M.D., Ph.D., served as decision editor on the manuscript.
Lisa B. Dixon, M.D., M.P.H.
Department of Psychiatry and Behavioral Neurosciences, University of South Florida, Tampa (Jones); Division of Behavioral Health Services and Policies, New York State Psychiatric Institute, New York City (Basaraba, Piscitelli, Jewell, Nossel, Bello, Mascayano, Scodes, Marino, Wall, Dixon). Editor Emeritus Howard H. Goldman, M.D., Ph.D., served as decision editor on the manuscript.

Notes

Send correspondence to Dr. Jones ([email protected]).

Competing Interests

The authors report no financial relationships with commercial interests.

Metrics & Citations

Metrics

Citations

Export Citations

If you have the appropriate software installed, you can download article citation data to the citation manager of your choice. Simply select your manager software from the list below and click Download.

For more information or tips please see 'Downloading to a citation manager' in the Help menu.

Format
Citation style
Style
Copy to clipboard

View Options

View options

PDF/EPUB

View PDF/EPUB

Login options

Already a subscriber? Access your subscription through your login credentials or your institution for full access to this article.

Personal login Institutional Login Open Athens login
Purchase Options

Purchase this article to access the full text.

PPV Articles - Psychiatric Services

PPV Articles - Psychiatric Services

Not a subscriber?

Subscribe Now / Learn More

PsychiatryOnline subscription options offer access to the DSM-5-TR® library, books, journals, CME, and patient resources. This all-in-one virtual library provides psychiatrists and mental health professionals with key resources for diagnosis, treatment, research, and professional development.

Need more help? PsychiatryOnline Customer Service may be reached by emailing [email protected] or by calling 800-368-5777 (in the U.S.) or 703-907-7322 (outside the U.S.).

Media

Figures

Other

Tables

Share

Share

Share article link

Share