The impact of early intervention psychosis services on hospitalisation experiences: a qualitative study with young people and their carers.

BACKGROUND: While a core aim of early intervention psychosis services (EIPS) is to prevent hospitalisation, many with a first episode of psychosis (FEP) will require inpatient care. We explored young people's (YP) and their carers' hospitalisation experiences prior to and during EIPS engagement and how factors across these services influenced these experiences. METHODS: Using purposive sampling, we recruited twenty-seven YP, all of whom had been involved with the hospital system at some stage, and twelve support persons (parents and partners of YP) from state and federally funded EIPS in Australia with different models of care and integration with secondary mental health care. Audio-recorded interviews were conducted face-to-face or via phone. A diverse research team (including lived experience, clinician, and academic researchers) used an inductive thematic analysis process. RESULTS: Four key themes were identified as influential in shaping participant's hospital experiences and provide ideas for an approach to care that is improved by the effective coordination of that care, and includes this care being delivered in a trauma informed manner: (1) A two-way street: EIPS affected how participants experienced hospitalisation, and vice versa; (2) It's about people: the quality and continuity of relationships participants had with staff, in hospital and at their EIPS, was central to their experience; (3) A gradual feeling of agency: participants viewed EIPS as both reducing involuntary care and supporting their self-management; and (4) Care coordination as navigation for the healthcare system: great when it works; frustrating when it breaks down. CONCLUSIONS: Hospitalisation was viewed as a stressful and frequently traumatic event, but a approach to care founded on trust, transparency, and collaboration that is trauma-informed ameliorated this negative experience. Consistent EIPS care coordination was reported as essential in assisting YP and carers navigate the hospital system; conversely, discontinuity in EIPS staff and lack of integration of EIPS with hospital care undermined the positive impact of the EIPS care coordinator during hospitalisation. Care coordinator involvement as a facilitator, information provider, and collaborator in inpatient treatment decisions may improve the usefulness and meaningfulness of hospital interventions.

The effectiveness of brief non-pharmacological interventions in emergency departments and psychiatric inpatient units for people in crisis: A systematic review and narrative synthesis.

OBJECTIVE: Heterogeneous brief non-pharmacological interventions and guidelines exist to treat the burgeoning presentations to both emergency department and inpatient settings, for those in a crisis of mental ill-health. We systematically reviewed the literature to create a taxonomy of these brief non-pharmacological interventions, and review their evaluation methods and effectiveness. METHOD: We conducted a systematic review across Cochrane, CINAHL, DARE, Embase, MEDLINE, PsycINFO databases. Studies meeting quality criteria, using Joanna Briggs Institute tools, were eligible. Interventions were categorised, and outcomes synthesised. RESULTS: Thirty-nine studies were included: 8 randomised controlled trials, 17 quasi-experimental, 11 qualitative studies, and 3 file audits. Taxonomy produced six coherent intervention types: Skills-focussed, Environment-focussed, Special Observation, Psychoeducation, Multicomponent Group and Multicomponent Individual. Despite this, a broad and inconsistent range of outcome measures reflected different outcome priorities and prevented systematic comparison of different types of intervention or meta-analysis. Few brief non-pharmacological interventions had consistent evidential support: sensory modulation rooms consistently improved distress in inpatient settings. Short admissions may reduce suicide attempts and readmission, if accompanied by psychotherapy. Suicide-specific interventions in emergency departments may improve depressive symptoms, but not suicide attempt rates. There was evidence that brief non-pharmacological interventions did not reduce incidence of self-harm on inpatient wards. We found no evidence for frequently used interventions such as no-suicide contracting, special observation or inpatient self-harm interventions. CONCLUSION: Categorising brief non-pharmacological interventions is feasible, but an evidence base for many is severely limited if not missing. Even when there is evidence, the inconsistency in outcomes often precludes clinicians from making inferences, although some interventions show promise.

The development of a novel sexual health promotion intervention for young people with mental ill-health: the PROSPEct project.

BACKGROUND: Young people with mental ill-health experience higher rates of high-risk sexual behaviour, have poorer sexual health outcomes, and lower satisfaction with their sexual wellbeing compared to their peers. Ensuring good sexual health in this cohort is a public health concern, but best practice intervention in the area remains under-researched. This study aimed to co-design a novel intervention to address the sexual health needs of young people with mental ill-health to test its effectiveness in a future trial undertaken in youth mental health services in Melbourne, Australia. METHODS: We followed the 2022 Medical Research Council (MRC) guidelines for developing and evaluating complex interventions. This involved synthesising evidence from the 'top down' (published evidence) and 'bottom up' (stakeholder views). We combined systematic review findings with data elicited from qualitative interviews and focus groups with young people, carers, and clinicians and identified critical cultural issues to inform the development of our intervention. RESULTS: Existing evidence in the field of sexual health in youth mental health was limited but suggested the need to address sexual wellbeing as a concept broader than an absence of negative health outcomes. The Information-Motivation-Belief (IMB) model was chosen as the theoretical Framework on which to base the intervention. Interviews/focus groups were conducted with 29 stakeholders (18 clinicians, three carers, and eight young people). Synthesis of the evidence gathered resulted in the co-design of a novel intervention consisting of an initial consultation and four 60-90-minute sessions delivered individually by a young 'sex-positive' clinician with additional training in sexual health. Barriers and supports to intervention success were also identified. CONCLUSIONS: Using the MRC Framework has guided the co-design of a potentially promising intervention that addresses the sexual health needs of young people with mental ill-health. The next step is to test the intervention in a one-arm feasibility trial.

The role of human involvement and support in digital mental health interventions for people with schizophrenia spectrum disorders: a critical review.

PURPOSE OF REVIEW: Schizophrenia spectrum disorders (SDD) are characterized by a complex array of psychosis symptoms, and typically require ongoing and long-term support, including pharmacological and nonpharmacological management. Digital mental health interventions (DMHIs) have been suggested as a novel therapeutic approach to enable low-cost, scalable improvements in quality of care for adults living with SSD. However, the types and role of human involvement and support within DMHIs is currently unknown. RECENT FINDINGS: Several recent systematic reviews and meta-analyses have investigated the potential efficacy of DMHIs for people with SSD, with scant yet emerging systematic evidence on the effects of human support within DMHIs on mental health outcomes. Further, several recent individual studies examined the efficacy of DMHIs with human support among people with SSD and provided valuable insights into the potential key elements of such support on outcomes relevant to this population. SUMMARY: The current critical review provides the first narrative synthesis of available evidence to guide clinicians and intervention develops in designing DMHIs with adequate human support that may enhance long-term outcomes of people living with SSD.

Making sense of narcolepsy: A qualitative exploration of how persons with narcolepsy perceive symptoms and their illness experience.

INTRODUCTION: Understanding how persons with narcolepsy conceptualize symptoms, daily impact and illness experience is key to facilitating dialogue between patients and healthcare professionals. These concepts are usually explored from the perspective of healthcare professionals/researchers and rarely from the perspective of those with narcolepsy. METHODS: 127 self-reported persons with narcolepsy were recruited from an Australian patient support group. A short demographic survey was completed. All agreed to participate in a subsequent 1:1 semi-structured interview. Saturation was reached after 24 interviews (mean age = 33 years (SD 11) with 44% reporting cataplexy). A multidisciplinary team of researchers/clinicians analyzed interview transcripts using thematic analysis. RESULTS: Participants perceived physical fatigue, sleepiness, and two separate experiences of 'falling asleep/sleep attacks' as distinct symptoms rather than a multidimensional construct (i.e. excessive daytime sleepiness). We also identified two experiences of cataplexy, one triggered by acute emotion and another by a stressor. Participants determined their narcolepsy to be 'well-managed' by the level of functional impairment rather than the frequency of any symptom. Almost all participants described experiencing anticipated stigma and internalized or 'self-' stigma, likely stemming from societal devaluation of sleep and the conflation of sleepiness with laziness. CONCLUSION: Descriptions of common symptoms often differed between participants and the existing literature. These differences likely impact patient-physician communication, with both parties utilizing the same terminology to communicate different concepts. The characterization of stigma in narcolepsy presents opportunities for future research exploring the impact and possible development of interventions to reduce the substantial psychological comorbidity in persons with narcolepsy.

A qualitative exploration of the lived experience of mothers caring for a child with narcolepsy.

STUDY OBJECTIVES: Parents/carers of a child with narcolepsy are often required to become experts in narcolepsy and navigate health care, education, and welfare systems on behalf of their child. Managing pediatric narcolepsy is complex and challenges the child and the entire family, yet few studies have explored carers' experiences. METHODS: Twenty mothers (50% had a child with narcolepsy < 18 years at the time of interview; 85% narcolepsy with cataplexy) participated in a 1:1 semistructured interview. Participation from fathers was sought; however, none were recruited. A multidisciplinary team of researchers/clinicians analyzed interview transcripts using thematic analysis. RESULTS: Mothers perceived that most people misunderstood the whole-person impact of narcolepsy, including their child's peers, teachers, and support networks. Narcolepsy had a substantial psychological impact on both the child and the whole family yet was largely unaddressed by health care professionals, leaving mothers unsure of where to turn for help. Most parents described negative experiences with their child's specialist, often perceiving the specialists to lack knowledge specific to narcolepsy. Information about illness trajectory and support services was limited or inaccessible, fueling many mothers' hopes and fears for their child's future. Mothers also frequently described feelings of abandonment by the health care system. CONCLUSIONS: Our results contextualize the whole-person impact of narcolepsy from the perspective of parents and carers, highlighting the need for proactive inclusion of parents/carers in developing health care policy and practice. It calls for developing tools and resources to capture "well-managed" narcolepsy from the perspective of parents/carers for use in research and clinical practice. CITATION: Schokman A, Cheung J, Klinner C, et al. A qualitative exploration of the lived experience of mothers caring for a child with narcolepsy. J Clin Sleep Med. 2024;20(5):699-707.

Implementation of a crisis resolution team service improvement programme: a qualitative study of the critical ingredients for success.

BACKGROUND: Crisis Resolution Teams (CRTs) offer home-based care for people in mental health crisis, as an alternative to hospital admission. The success of CRTs in England has been variable. In response to this, the CRT Optimization and RElapse prevention (CORE) study developed and trialled a 12-month Service Improvement Programme (SIP) based on a fidelity model. This paper describes a qualitative evaluation of the perspectives of CRT staff, managers, and programme facilitators. We identify barriers and facilitators to implementation, and mechanisms by which service improvements took place. METHODS: Managers and staff from six purposively sampled CRTs were interviewed, as well as six facilitators who were employed to support the implementation of service improvement plans. Semi-structured focus groups and individual interviews were conducted and analysed using thematic analysis. FINDINGS: A majority of participants viewed all components of the SIP as helpful in improving practice, although online resources were under-used. Perceived barriers to implementation centred principally around lack of staff time and ownership. Support from both senior staff and facilitators was essential in enabling teams to undertake the work associated with the SIP. All participating stakeholder groups reported that using the fidelity model to benchmark their CRT work to best practice and feel part of a 'bigger whole' was valuable. CONCLUSION: CRT staff, managers and programme facilitators thought that a structured service improvement programme helped to increase fidelity to a best practice model. Flexibility (from all stakeholders) was key to enable service improvement actions to be manageable within time- and resource-poor teams.

Co-Production of a Flexibly Delivered Relapse Prevention Tool to Support the Self-Management of Long-Term Mental Health Conditions: Co-Design and User Testing Study.

BACKGROUND: Supported self-management interventions, which assist individuals in actively understanding and managing their own health conditions, have a robust evidence base for chronic physical illnesses, such as diabetes, but have been underused for long-term mental health conditions. OBJECTIVE: This study aims to co-design and user test a mental health supported self-management intervention, My Personal Recovery Plan (MyPREP), that could be flexibly delivered via digital and traditional paper-based mediums. METHODS: This study adopted a participatory design, user testing, and rapid prototyping methodologies, guided by 2 frameworks: the 2021 Medical Research Council framework for complex interventions and an Australian co-production framework. Participants were aged ≥18 years, self-identified as having a lived experience of using mental health services or working in a peer support role, and possessed English proficiency. The co-design and user testing processes involved a first round with 6 participants, focusing on adapting a self-management resource used in a large-scale randomized controlled trial in the United Kingdom, followed by a second round with 4 new participants for user testing the co-designed digital version. A final round for gathering qualitative feedback from 6 peer support workers was conducted. Data analysis involved transcription, coding, and thematic interpretation as well as the calculation of usability scores using the System Usability Scale. RESULTS: The key themes identified during the co-design and user testing sessions were related to (1) the need for self-management tools to be flexible and well-integrated into mental health services, (2) the importance of language and how language preferences vary among individuals, (3) the need for self-management interventions to have the option of being supported when delivered in services, and (4) the potential of digitization to allow for a greater customization of self-management tools and the development of features based on individuals' unique preferences and needs. The MyPREP paper version received a total usability score of 71, indicating C+ or good usability, whereas the digital version received a total usability score of 85.63, indicating A or excellent usability. CONCLUSIONS: There are international calls for mental health services to promote a culture of self-management, with supported self-management interventions being routinely offered. The resulting co-designed prototype of the Australian version of the self-management intervention MyPREP provides an avenue for supporting self-management in practice in a flexible manner. Involving end users, such as consumers and peer workers, from the beginning is vital to address their need for personalized and customized interventions and their choice in how interventions are delivered. Further implementation-effectiveness piloting of MyPREP in real-world mental health service settings is a critical next step.

From "online brains" to "online lives": understanding the individualized impacts of Internet use across psychological, cognitive and social dimensions.

In response to the mass adoption and extensive usage of Internet-enabled devices across the world, a major review published in this journal in 2019 examined the impact of Internet on human cognition, discussing the concepts and ideas behind the "online brain". Since then, the online world has become further entwined with the fabric of society, and the extent to which we use such technologies has continued to grow. Furthermore, the research evidence on the ways in which Internet usage affects the human mind has advanced considerably. In this paper, we sought to draw upon the latest data from large-scale epidemiological studies and systematic reviews, along with randomized controlled trials and qualitative research recently emerging on this topic, in order to now provide a multi-dimensional overview of the impacts of Internet usage across psychological, cognitive and societal outcomes. Within this, we detail the empirical evidence on how effects differ according to various factors such as age, gender, and usage types. We also draw from new research examining more experiential aspects of individuals' online lives, to understand how the specifics of their interactions with the Internet, and the impact on their lifestyle, determine the benefits or drawbacks of online time. Additionally, we explore how the nascent but intriguing areas of culturomics, artificial intelligence, virtual reality, and augmented reality are changing our understanding of how the Internet can interact with brain and behavior. Overall, the importance of taking an individualized and multi-dimensional approach to how the Internet affects mental health, cognition and social functioning is clear. Furthermore, we emphasize the need for guidelines, policies and initiatives around Internet usage to make full use of the evidence available from neuroscientific, behavioral and societal levels of research presented herein.