Clients' Preferences for Family Involvement and Subsequent Family Contact Patterns Within OnTrackNY Early Psychosis Services.

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.

Understanding the implementation of coordinated specialty Care for Early Psychosis in New York state: A guide using the RE-AIM framework.

AIM: Consistent evidence shows that early interventions for individuals with psychosis lead to improvements in symptoms, social functioning and treatment satisfaction. These results, combined with the allocation of specific funds for early psychosis services, have contributed to the emergence and dissemination of coordinated specialty care for early psychosis in the United States. Despite the rapid growth of such services across the country over the last 5 years, implementation processes are not yet well understood. We employ the RE-AIM (Reach, Effectiveness, Adoption, Implementation and Maintenance) framework to describe processes, achievements and challenges of an early psychosis program called OnTrackNY that has been implemented in New York State. METHODS: OnTrackNY is a coordinated specialty care program that delivers early intervention services that include both medications and psychosocial interventions to youths experiencing a first episode of non-affective psychosis. By drawing on outcome and care process data that are collected quarterly from all OnTrackNY sites, we describe the status of each RE-AIM dimension regarding OnTrackNY implementation followed by an evaluation of both achievements and shortcomings. RESULTS: In general terms, OnTrackNY has shown to be a scalable and sustainable model for addressing early psychosis, reaching and providing recovery-oriented services to a large population in need. CONCLUSION: Despite its advancements, a series of limitations pose challenges to the implementation and maintenance of the model including, but not to, the lack of incentives for coordination of services, the fragmentation of child and adult services, and concerns about financial sustainability.

Results from a pilot study of a computer-based role-playing game for young people with psychosis.

AIM: Recent research on first episode psychosis (FEP) has demonstrated the effectiveness of coordinated specialty care (CSC) models to support young adults and their families, yet few tools exist to promote engagement in care. This study aimed to develop a prototype computer-based role-playing game (RPG) designed for young people who have experienced FEP, and conduct a pilot study to determine feasibility and test whether the game improves consumers' attitudes toward treatment and recovery. METHODS: Twenty young people with FEP who were receiving services at a CSC program enrolled in the study and played the game for 1 hour. Pre- and post-quantitative assessments measured change in hope, recovery, stigma, empowerment and engagement in treatment. Qualitative interviews explored participants' experience with the game and ideas for further product development. RESULTS: Participants showed significant increase in positive attitudes toward recovery. The qualitative findings further demonstrated the game's positive impact across these domains. Of all game features, participants most highly valued video testimonials of other young adults with FEP telling their stories of hope and recovery. CONCLUSIONS: These findings provide modest support for the potential benefits of this type of computer-based RPG, if further developed for individuals experiencing psychosis.

Understanding Pathways to Care of Individuals Entering a Specialized Early Intervention Service for First-Episode Psychosis.

OBJECTIVE: This study aimed to understand the pathways to care from the onset of a first episode of psychosis to entry into a specialized early intervention service (EIS) for individuals with nonaffective psychosis. METHODS: A sample of 20 individuals who participated in an EIS and ten of their family members were enrolled. Semistructured qualitative interviews were used to characterize participants' lives during the onset of psychosis and explore their help-seeking events from the onset of psychosis to entry into the EIS. Data were analyzed by using grounded theory and a case study methodology. RESULTS: The median duration between the onset of psychosis and EIS entry was 4.5 months. A grounded model emerged from the analysis that captured how help-seeking decisions were influenced by the misattribution of symptoms, stigma, and self-reliance. These factors created a cloud of uncertainty in which individuals experiencing early psychosis and their family members struggled to make sense of what was happening, how and when to seek help, and what to expect from treatment. Contacts with the health care system were critical junctures in the pathway to care that could reduce or increase uncertainty and expedite or delay EIS entry. CONCLUSIONS: Findings indicate that efforts to expedite EIS entry should focus on reducing the uncertainty that affected individuals and their family members face when seeking care by improving their experiences with mental health services.

Family member engagement with early psychosis specialty care.

BACKGROUND: Family members of individuals with early psychosis (EP) play critical roles in their engagement with EP services, but family member experiences of those roles are insufficiently understood. METHODS: We conducted semi-structured interviews with 18 family members of individuals enrolled in EP services during the Recovery After an Initial Schizophrenia Episode-Implementation Evaluation Study (RAISE-IES study), to better understand their experiences engaging with EP specialty care and their roles in client engagement in services. RESULTS: Family members described diverse experiences with the interplay among distress regarding their loved one's illness, uncertainty engaging with programme staff and highly valued facets of the clinical programme. These included ongoing family outreach and support, frequent communication from staff, programme flexibility and individualization of care. They also described varied and stressful complexities involved in providing practical assistance and encouragement to support their loved one's engagement in care. Competing responsibilities, time and resource limitations, and the intricacy of providing support while fostering autonomy impacted their roles and experiences. CONCLUSIONS: Given key family roles for most EP clients, understanding family members' highly individual experiences and responding to them in tailored ways is necessary to best support families in helping their loved ones engage in care and recovery as well as navigate their own worry and stress. Recommendations for engaging and supporting family members are highlighted.

Family Involvement in the Clinical Care of Clients With First-Episode Psychosis in the RAISE Connection Program.

OBJECTIVE: This study described how families were involved in the RAISE Connection Program for clients with first-episode psychosis (FEP) and examined factors that predicted family involvement. METHODS: Presence of family members at clinical visits for 65 clients with FEP was described. Multiple regressions were conducted to determine whether demographic characteristics, clinical factors, or client-provider discussions regarding family predicted family involvement during the first six months of the program. RESULTS: Most participants (95%) had at least one family member attend a clinical visit during program involvement. Age of the client with FEP, psychiatric symptoms, and substance use predicted the number of days family members attended visits during the first six months of program participation; client-provider discussions about family did not. CONCLUSIONS: Family involvement in the ongoing care of clients with FEP is common when efforts are made to engage clients with FEP and their families.

Giving Back to Families: Evidence and Predictors of Persons with Serious Mental Illness Contributing Help and Support to Families.

Persons with serious mental illness (SMI) often rely on family for significant assistance and support, but the contributions made by persons with SMI to their families have been overlooked. This study assessed the extent to which persons with SMI contribute help or support to their families and identified significant predictors of contribution using an analysis of 1 year of clinicians' electronic health record (EHR) notes. EHR notes with reference to families of 226 Veterans with SMI were extracted and classified as suggesting help being given to and/or received from families. Forty-one percent of the sample contributed to family in a variety of ways. More frequent contact with family and being female were significant predictors of contribution. This study underlines the potential for reciprocal relationships within families of individuals with SMI. Clinicians can help clients and families maximize the support they provide to one another and possibly improve outcomes.