Dataset Information

Developing and implementing a culturally informed FAmily Motivational Engagement Strategy (FAMES) to increase family engagement in first episode psychosis programs: mixed methods pilot study protocol.

ABSTRACT: INTRODUCTION:Despite the proven effectiveness of coordinated specialty care (CSC) programmes for first episode psychosis in the USA, CSC programmes often have low levels of engagement in family psychoeducation, and engagement of racial and ethnic minority family members is even lower than that for non-Latino white family members. The goal of this study is to develop and evaluate a culturally informed FAmily Motivational Engagement Strategy (FAMES) and implementation toolkit for CSC providers. METHODS AND ANALYSIS:This protocol describes a mixed methods, multi-phase study that blends intervention mapping and the Promoting Action on Research in Health Services framework to develop, modify and pilot-test FAMES and an accompanying implementation toolkit. Phase 1 will convene a Stakeholder Advisory Committee to inform modifications based on findings from phases 1 and 2. During phase 1, we will also recruit approximately 200 family members to complete an online survey to assess barriers and motivation to engage in treatment. Phase 2 we will recruit five family members into a 3-month trial of the modified FAMES and implementation toolkit. Results will guide the advisory committee in refining the intervention and implementation toolkit. Phase 3 will involve a 16-month non-randomised, stepped-wedge trial with 50 family members from five CSC programmes in community-based mental health clinics to examine the acceptability, feasibility and initial impact of FAMES and the implementation toolkit. ETHICS AND DISSEMINATION:This study received Institutional Review Board approval from Washington State University, protocol #17?812-001. Results will be disseminated via peer review publications, presentations at national and international conferences, and to local community mental health agencies and committees. TRIAL REGISTRATION NUMBER:ClinicalTrials.gov Registry (NCT04188366).

SUBMITTER: Oluwoye O

PROVIDER: S-EPMC7451463 | biostudies-literature | 2020 Aug

REPOSITORIES: biostudies-literature

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Developing and implementing a culturally informed <b>FA</b>mily <b>M</b>otivational <b>E</b>ngagement <b>S</b>trategy (FAMES) to increase family engagement in first episode psychosis programs: mixed methods pilot study protocol.

Oluwoye Oladunni O Dyck Dennis D McPherson Sterling M SM Lewis-Fernández Roberto R Compton Michael T MT McDonell Michael G MG Cabassa Leopoldo J LJ

BMJ open 20200826 8

<h4>Introduction</h4>Despite the proven effectiveness of coordinated specialty care (CSC) programmes for first episode psychosis in the USA, CSC programmes often have low levels of engagement in family psychoeducation, and engagement of racial and ethnic minority family members is even lower than that for non-Latino white family members. The goal of this study is to develop and evaluate a culturally informed FAmily Motivational Engagement Strategy (FAMES) and implementation toolkit for CSC provi ...[more]

PMID: 32847910

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Project description:BackgroundEarly Intervention in Psychosis (EIP) services improve health outcomes for young people with psychosis in the medium-long term, but 25% of young people disengage in the first 12 months with costs to their mental health, families, society and the NHS. This study will evaluate the effectiveness, cost-effectiveness and implementation of a team-based motivational Early Youth Engagement (EYE-2) intervention.MethodThe study design is a cluster randomised controlled trial (RCT) with economic evaluation, comparing the EYE-2 intervention + standardised EIP service to standardised EIP service alone, with randomisation at the team level. A process evaluation will evaluate the delivery of the intervention qualitatively and quantitatively across contexts. The setting is 20 EIP teams in 5 sites: Manchester, South London, East Anglia, Thames Valley and Hampshire. Participants are young people (14-35 years) with first episode psychosis, and EIP staff. The intervention is the team-based motivational engagement (EYE-2) intervention, delivered alongside standardised EIP services, and supported by additional training, website, booklets and social groups. The comparator is the standardised EIP service. Both interventions are delivered by EIP clinicians. The primary outcome is time to disengagement (time in days from date of allocation to care coordinator to date of last contact following refusal to engage with EIP service, or lack of response to EIP contact for a consecutive 3-month period). Secondary outcomes include mental and physical health, deaths, social and occupational function, recovery, satisfaction and service use at 6, 12, 18 and 24 months. A 12-month within-trial economic evaluation will investigate cost-effectiveness from a societal perspective and from an NHS perspective.DiscussionThe trial will provide the first test of an engagement intervention in standardised care, with the potential for significant impact on the mental health and wellbeing of young people and their families, and economic benefits for services. The intervention will be highly scalable, supported by the toolkit including manuals, commissioning guide, training and resources, adapted to meet the needs of the diverse EIP population, and based on an in-depth process evaluation.Trial registrationISRCTN 51629746 prospectively registered 7th May 2019. Date assigned 10th May 2019.

Project description:Background: Actissist is a smartphone app designed to deliver an intervention grounded in cognitive behavior therapy for early psychosis. Actissist was developed by a multidisciplinary team of academics, clinicians, experts by experience and software engineers. Actissist has been tested in two trials, the first a proof-of-concept trial where Actissist was safe, acceptable and feasible, the second, a powered randomized controlled trial. Objective: This article describes how our multidisciplinary team designed and developed Actissist. This article describes: (i) how Actissist was informed by initial qualitative interviews and focus groups and an expert reference group; (ii) refinements made to the app based on ongoing user feedback; (iii) successes and challenges encountered; and (iv) learning points and recommendations for involving stakeholders in digital health interventions. Methods: Expert reference group meetings informed the development of Actissist and design of subsequent trials, which included individuals with lived experience of psychosis, clinicians, academics, computer scientists and software engineers. Person-centered stakeholder involvement was promoted using focus groups and qualitative interviews prior to the development of the app, which informed version one of Actissist. Interviews were carried out with participants who had used Actissist. Two further versions of Actissist were developed following additional rounds of testing. Results: Multidisciplinary working throughout the Actissist project led to the development, inclusion and improvement of the app design and content. These changes and features included non-directive and compassionate content, co-designed recovery videos, relaxation exercises, psychoeducation material, ability to "favorite" areas of the app that users found helpful, and goal-setting. Challenges to collaborative working included discrepancies between what stakeholders want and what is technically possible to deliver, resource pressures, trying to deliver desired features within the boundaries of fundamental trial design considerations, and power imbalances associated with multidisciplinary working. Conclusions: The involvement of stakeholders in the design and development and delivery of Actissist has been fundamental to our development approach. Through this collaborative process, we have identified different perspectives and ideas that would have not been generated by the research team alone. Clinical Trial Registrations: Proof-of-concept trial: http://www.isrctn.com/ISRCTN34966555 Fully-powered randomized controlled trial: https://www.isrctn.com/ISRCTN76986679.

Project description:BackgroundThough olfactory deficits are well-documented in schizophrenia, fewer studies have examined olfactory performance profiles across the psychosis spectrum. The current study examined odor identification, discrimination, and detection threshold performance in first-episode psychosis (FEP) patients diagnosed with schizophrenia, schizoaffective disorder, bipolar disorder with psychotic features, major depression with psychotic features, and other psychotic conditions.MethodFEP patients (n = 97) and healthy adults (n = 98) completed birhinal assessments of odor identification, discrimination, and detection threshold sensitivity for lyral and citralva. Participants also completed measures of anticipatory pleasure, anhedonia, and empathy. Differences in olfactory performances were assessed between FEP patients and controls and within FEP subgroups. Sex-stratified post hoc analyses were employed for a complete analysis of sex differences. Relationships between self-report measures and olfactory scores were also examined.ResultsIndividuals with psychosis had poorer scores across all olfactory measures when compared to the control group. Within the psychosis cohort, patients with schizophrenia-associated psychosis had poorer odor identification, discrimination, and citralva detection threshold scores relative to controls. In schizophrenia patients, greater olfactory disturbance was associated with increased negative symptomatology, greater self-reported anhedonia, and lower self-reported anticipatory pleasure. Patients with mood-associated psychosis performed comparable to controls though men and women in this cohort showed differential olfactory profiles.ConclusionsThese findings indicate that olfactory deficits extend beyond measures of odor identification in FEP with greater deficits observed in schizophrenia-related subgroups of psychosis. Studies examining whether greater olfactory dysfunction confers greater risk for developing schizophrenia relative to other forms of psychosis are warranted.

Dataset Information

Developing and implementing a culturally informed FAmily Motivational Engagement Strategy (FAMES) to increase family engagement in first episode psychosis programs: mixed methods pilot study protocol.

Publications

Developing and implementing a culturally informed <b>FA</b>mily <b>M</b>otivational <b>E</b>ngagement <b>S</b>trategy (FAMES) to increase family engagement in first episode psychosis programs: mixed methods pilot study protocol.

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