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Engagement at entry to an early intervention service for first episode psychosis: an exploratory study of young people and caregivers
Abstract
Early intervention services play a crucial role in providing treatment for young people experiencing a first episode psychosis. However, on average, 30 per cent of young people disengage from treatment, which may result in untreated symptoms, difficulty returning to school or work and relationship breakdowns. This qualitative study aimed to understand the help-seeking experiences and initial engagement with an early intervention service. Semi-structured interviews were conducted with nine young people and five caregivers, focussing on engagement in the first eight weeks of treatment. Themes were identified using thematic analysis. Key findings were that participants entered the early intervention service after a time of intense distress and confusion. This was related to symptoms, difficulties working or studying, and initial experiences of help-seeking and treatment. Commonly there was relief on meeting a caring person who would be their support going forward. However, trust was influenced by previous positive and negative experiences. Establishing a therapeutic relationship and building trust are dynamic and relational concepts, and as such, they warrant reflection by all key stakeholders. Awareness and understanding of these concepts may guide changes to individual practice and service development.
... International qualitative research, chiefly from Australia, the United Kingdom and the United States, has highlighted transition to and from EIPS at service entry and service discharge can be a challenging time [11][12][13][14][15][16][17][18]. However, there remains a paucity of Australian qualitative research that explores how YP and their SP experience EIPS support across all stages of their journey through the service. ...
... However, there remains a paucity of Australian qualitative research that explores how YP and their SP experience EIPS support across all stages of their journey through the service. Most Australian qualitative research in this area has focused on engagement [14][15][16][17] and experience of EIPS access [18]. This an important and growing area of research, with a meta-synthesis of qualitative research describing how engagement is experienced by young people and carers [14]. ...
... However, in this research it was common for YP and SP to report poor first engagement experiences with other primary, secondary and tertiary health and mental health providers before reaching the EIPS. By the time participants in our study reached EIPS, they were often confused, in considerable distress or at crisis point, and many had been hospitalised, which is in line with other qualitative Australian findings on service engagement [14][15][16]. This is important as qualitative research has highlighted that a YP's uncertainty about first episode psychosis is compounded when the first contact with a health provider is negative [27]. ...
Background
Different Early Intervention Psychosis Service (EIPS) models of care exist, but many rely upon community-based specialist clinical teams, often with other services providing psychosocial care. Time-limited EIPS care creates numerous service transitions that have potential to interrupt continuity of care. We explored with young people (YP) and their support people (SP) their experiences of these transitions, how they affected care and how they could be better managed.
Methods
Using purposive sampling, we recruited twenty-seven YP, all of whom had been hospitalised at some stage, and twelve SP (parents and partners of YP) from state and federally funded EIPS in Australia with different models of care and integration into 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. Two researchers undertook iterative coding using NVivo12 software, themes were developed and refined in ongoing team discussion.
Results
The analysis identified four major service-related transitions in a YP’s journey with the EIPS that were described as reflecting critical moments of care, including: transitioning into EIPS; within service changes; transitioning in and out of hospital whilst in EIPS care; and, EIPS discharge. These service-related transition affected continuity of care, whilst within service changes, such as staff turnover, affected the consistency of care and could result in information asymmetry. At these transition points, continuity of care, ensuring service accessibility and flexibility, person centredness and undertake bio-psychosocial support and planning were recommended. State and federally funded services both had high levels of service satisfaction, however, there was evidence of higher staff turnover in federally funded services.
Conclusion
Service transitions were identified as vulnerable times in YP and SP continuity of care. Although these were often well supported by the EIPS, participants provided illustrative examples for service improvement. These included enhancing continuity and consistency of care, through informed and supportive handovers when staff changes occur, and collaborative planning with other services and the YP, particularly during critical change periods such as hospitalisation.
... To address these gaps in our understanding on engagement and disengagement, we have conducted a larger qualitative longitudinal study. We initially sought to understand early experiences of engaging with EISs for FEP and found that young people and their caregivers value the personal and relational aspects of engagement, such as building a trusting relationship with a clinician (13). Young people and caregivers entered the EIS with varying levels of treatment participation and desire for engagement, and engagement significantly benefited from tailoring treatment to the young person's goals at this early stage of contact. ...
... We attempted to recruit a "real-world" sample of young people into the study, as is summarized in our earlier paper exploring young person and caregivers' experiences of entry into an EIS (13). An overview of recruitment and data collection is provided in Figure 1. ...
... Interviews were coded and analyzed both by participant group and time-point. This process is outlined in our previous papers (13,14). ...
Background:
Specialized early intervention services for first-episode psychosis have been well established in many countries to meet the unique needs of this group. However, with high drop-out rates, these services would benefit from understanding the factors that influence a person's decision to engage with, or disengage from, them. No research has explored the experiences of engagement and disengagement over time, from the perspectives of the person who experienced a first-episode psychosis, their caregiver, and their clinician. This information is crucial to help services better respond to the needs of the people using them. The aim of this study was to understand what causes and maintains periods of disengagement from early intervention services for first-episode psychosis over time.
Methods:
Using a longitudinal, qualitative approach, young people, their caregivers, and their clinicians were followed through their first year with an early intervention service for first-episode psychosis in Melbourne, Australia. Qualitative interviews were completed between 3-9 weeks, 4-7 months, and 11-15 months after entry to the service (or at discharge if earlier). Trajectory analysis was used to understand the data.
Results:
Qualitative interviews were conducted with 24 participants (55 interviews). Young people were aged 15-24 years, came from a variety of cultural backgrounds and had various psychotic diagnoses. Three major processes were identified that, over time, led to periods of service disengagement: a mismatch between service model and individual presentation (service mismatch), a lack of shared purpose (aimless engagement), and responses to individual circumstances (reactive disengagement).
Conclusion:
Triangulating experiences of engagement across young people, caregivers, and clinicians allows for a comprehensive understanding of what precipitates service disengagement. This study demonstrates how early intervention services for first-episode psychosis are meeting the needs of young people and caregivers, and what areas warrant improvement. The needs of service users and patterns of disengagement vary. In turn, services must be flexible and responsive to individual circumstances. The results of this study recommend that local and international policies move away from diagnostically driven models of care, to better provide an inclusive treatment service for people with transdiagnostic mental health presentations.
... Two recent meta-syntheses of studies of engagement in early psychosis highlighted the following themes: the experiences of finding help; factors promoting engagement, including the providers' abilities to establish an effective therapeutic relationship and to foster a sense of identity and hope; and caregivers' roles in supporting engagement; and factors impacting ongoing engagement, such as distress, confusion, or stigma (Loughlin et al., 2019;Tindall et al., 2018b). Several early psychosis studies have identified the importance of collaborative relationships with providers that prioritize service users' perspectives (Lester et al., 2011;Stewart, 2013;Tindall et al., 2018a), and the role of family and friends from outside the service (Lester et al., 2011;Tindall et al., 2018a). Beyond early intervention, a qualitative study in assertive community treatment similarly identified therapeutic alliance, the provision of practical support, acceptance and flexibility as key to engaging clients (George, Manuel, Gandy-Guedes, & Negatu, 2016). ...
... Two recent meta-syntheses of studies of engagement in early psychosis highlighted the following themes: the experiences of finding help; factors promoting engagement, including the providers' abilities to establish an effective therapeutic relationship and to foster a sense of identity and hope; and caregivers' roles in supporting engagement; and factors impacting ongoing engagement, such as distress, confusion, or stigma (Loughlin et al., 2019;Tindall et al., 2018b). Several early psychosis studies have identified the importance of collaborative relationships with providers that prioritize service users' perspectives (Lester et al., 2011;Stewart, 2013;Tindall et al., 2018a), and the role of family and friends from outside the service (Lester et al., 2011;Tindall et al., 2018a). Beyond early intervention, a qualitative study in assertive community treatment similarly identified therapeutic alliance, the provision of practical support, acceptance and flexibility as key to engaging clients (George, Manuel, Gandy-Guedes, & Negatu, 2016). ...
... Our study, unique of its kind, explores the role of agency and structures in individuals' expressions of autonomy, or the lack of it, as they make decisions about their own treatment and recovery. Fostering individuals' autonomy is essential as it can support shared decision-making in services (Tindall et al., 2018a), which is strongly recommended by clinical practice guidelines (National Collaborating Centre For Mental Health, 2013;Early Psychosis Guidelines Writing Group and EPPIC National Support Program, 2016). ...
Background
Specialized early intervention programs for individuals experiencing a first episode of psychosis prioritize service engagement, generally operationalized as attendance, treatment completion, therapeutic alliance, and treatment adherence. However, there are critical theoretical and methodological gaps in understanding how service users experience and define their engagement with the service.
Objectives
This study aimed to explore how current and former service users define their engagement with a specialized early intervention program.
Design
A qualitative descriptive approach was used to explore service users’ decisions to use, remain involved with, and/or leave early intervention services.
Setting
This study took place in an early intervention service for psychosis in Montreal, Canada.
Participants
Twenty-four participants who had experienced a first episode of psychosis and had been engaged in the service to varying degrees (fully engaged, partially engaged, disengaged) took part in in-depth interviews.
Methods
In-depth interviews were employed to collect rich insights into participants’ experiences and perceptions. The interviews were transcribed and analysed using thematic analysis, beginning with an inductive approach and completing the analysis using a theoretical approach. During the analysis, our original notions of engagement and disengagement were challenged by theorizing engagement in terms of agency and structure. Researchers engaged in reflexive practices to maintain and promote research rigor and trustworthiness.
Results
Participants’ narratives were thematically analyzed and organized into three themes: fluidity and temporality of engagement and disengagement; engagement as an ongoing negotiation; and critical structures and agency. Participants described engagement in a variety of ways, some of which were broader than service use and focused on self-care and commitment to recovery. These conceptions were subject to change as the individuals’ perceptions of their needs changed. As needs changed, individuals also negotiated and renegotiated their care needs with themselves and with their treatment team. These exercises of agency were constrained by key structures: the treatment team, family and friends, and societal conceptions of mental health.
Conclusions
Our study findings argue for an expanded definition of engagement which prioritizes individuals’ experience and acknowledges the steps towards recovery that they may make outside of the purview of the service. It also underlines the importance of a treatment structure which aligns with individuals’ needs for both support and autonomy.
... Relationships, activities and decisions that invoke trust are integral to effective collaboration in multi-disciplinary healthcare teams (Topp and Chipukuma, 2016) and to the therapeutic relationship between service providers and users (Brown et al., 2009). In mental health settings, including early psychosis intervention (EPI) programs, the uncertainties and risks associated with diagnosis and the experience of symptoms and treatment are considerable (Tindall et al., 2018a), rendering feelings of anxiety and vulnerability in service users. ...
... In qualitative studies examining young people's experiences of EPI services, reasons reported for treatment disengagement include issues around trust, for instance the feeling of not being understood or listened to (van Schalkwyk et al., 2015). Conversely, engagement has been shown to occur when EPI clients deem clinicians as being trustworthy (Tindall et al., 2018a(Tindall et al., , 2018b, which they describe as being positive, genuine, respectful, confidential, non-judgemental, understanding, caring, listening and focusing on them rather than the illness (Stewart, 2013;Tindall et al., 2018a;2018b). Mistrust, as reported by adults and young people with psychosis, occurs when they feel that service providers do not sufficiently know them (Farrelly et al., 2015) and when institutional aims appear to take priority over their interests, as for example when medication adherence is emphasized (Bjornestad et al., 2017b). ...
... In qualitative studies examining young people's experiences of EPI services, reasons reported for treatment disengagement include issues around trust, for instance the feeling of not being understood or listened to (van Schalkwyk et al., 2015). Conversely, engagement has been shown to occur when EPI clients deem clinicians as being trustworthy (Tindall et al., 2018a(Tindall et al., , 2018b, which they describe as being positive, genuine, respectful, confidential, non-judgemental, understanding, caring, listening and focusing on them rather than the illness (Stewart, 2013;Tindall et al., 2018a;2018b). Mistrust, as reported by adults and young people with psychosis, occurs when they feel that service providers do not sufficiently know them (Farrelly et al., 2015) and when institutional aims appear to take priority over their interests, as for example when medication adherence is emphasized (Bjornestad et al., 2017b). ...
... Thirteen of the 21 studies (62%) (Allard et al. 2018;Chen et al. 2016;Connor et al. 2016;Franz et al. 2010;Giacon et al. 2019;Kumar et al. 2019;Lavis et al. 2015;Lucksted et al. 2018;Napa et al. 2017;Petrakis et al. 2013;Tanskanen et al. 2011;Tindall et al. 2018a;Yarborough et al. 2018) discussed the psychological and mixed emotion impacts on family members of individuals with FEP prior to referral or treatment initiation. These studies specifically mentioned the development or feeling of desperation (Allard et al. 2018), distress (Lavis et al. 2015;Lucksted et al. 2018;Napa et al. 2017;Tindall et al. 2018a), fear (Connor et al. 2016), confusion (Kumar et al. 2019;Lavis et al. 2015;Tindall et al. 2018a), sadness (Cadario et al. 2012), guilt (Connor et al. 2016;Franz et al. 2010;Hasan and Musleh 2017;Tanskanen et al. 2011;Yarborough et al. 2018) loss (Lavis et al. 2015;Lucksted et al. 2018), general emotional wear and pain (Giacon et al. 2019) and isolation (Napa et al. 2017). ...
... Thirteen of the 21 studies (62%) (Allard et al. 2018;Chen et al. 2016;Connor et al. 2016;Franz et al. 2010;Giacon et al. 2019;Kumar et al. 2019;Lavis et al. 2015;Lucksted et al. 2018;Napa et al. 2017;Petrakis et al. 2013;Tanskanen et al. 2011;Tindall et al. 2018a;Yarborough et al. 2018) discussed the psychological and mixed emotion impacts on family members of individuals with FEP prior to referral or treatment initiation. These studies specifically mentioned the development or feeling of desperation (Allard et al. 2018), distress (Lavis et al. 2015;Lucksted et al. 2018;Napa et al. 2017;Tindall et al. 2018a), fear (Connor et al. 2016), confusion (Kumar et al. 2019;Lavis et al. 2015;Tindall et al. 2018a), sadness (Cadario et al. 2012), guilt (Connor et al. 2016;Franz et al. 2010;Hasan and Musleh 2017;Tanskanen et al. 2011;Yarborough et al. 2018) loss (Lavis et al. 2015;Lucksted et al. 2018), general emotional wear and pain (Giacon et al. 2019) and isolation (Napa et al. 2017). These emotional responses penetrated their everyday caregiving role and were perceived as the most important factor that determined their capacity to support their loved one with FEP. ...
... Thirteen of the 21 studies (62%) (Allard et al. 2018;Chen et al. 2016;Connor et al. 2016;Franz et al. 2010;Giacon et al. 2019;Kumar et al. 2019;Lavis et al. 2015;Lucksted et al. 2018;Napa et al. 2017;Petrakis et al. 2013;Tanskanen et al. 2011;Tindall et al. 2018a;Yarborough et al. 2018) discussed the psychological and mixed emotion impacts on family members of individuals with FEP prior to referral or treatment initiation. These studies specifically mentioned the development or feeling of desperation (Allard et al. 2018), distress (Lavis et al. 2015;Lucksted et al. 2018;Napa et al. 2017;Tindall et al. 2018a), fear (Connor et al. 2016), confusion (Kumar et al. 2019;Lavis et al. 2015;Tindall et al. 2018a), sadness (Cadario et al. 2012), guilt (Connor et al. 2016;Franz et al. 2010;Hasan and Musleh 2017;Tanskanen et al. 2011;Yarborough et al. 2018) loss (Lavis et al. 2015;Lucksted et al. 2018), general emotional wear and pain (Giacon et al. 2019) and isolation (Napa et al. 2017). These emotional responses penetrated their everyday caregiving role and were perceived as the most important factor that determined their capacity to support their loved one with FEP. ...
Objectives
This study systematically reviewed existing qualitative evidence of family members’ experiences prior to the initiation of mental health services for a loved one experiencing their first episode of psychosis (FEP).
Methods
A meta-synthesis review of published peer-reviewed qualitative studies conducted between 2010 and 2019 were included. Keyword searches were performed in four electronic databases and the reference lists of primary manuscripts. Two independent reviewers used the Critical Appraisal Skills Programme (CASP) qualitative checklist to assess methodological quality of each study.
Results
A total of 365 articles were initially identified and 9 were articles identified in a secondary review and literature search. A total of 21 met inclusion criteria. Of those included in this review 169, mothers were the primary family to recall experiences. The meta-synthesis identified four major themes related to family member experiences prior to the initiation of mental health services for FEP: the misinterpretation of signs, the emotional impact of FEP on family members, the effect of stigma on family members, and engaging with resources prior to mental health services for FEP.
Conclusions
Additional research is needed to develop healthy communication strategies that effectively deliver educational information about psychosis. This meta-synthesis also identified the need to understand help-seeking behaviors among families of those with FEP in effort to reduce the duration of untreated psychosis and improve pathways to care often initiated by a family member.
... Young person enrolment into the study attempted to replicate a real-world sample of young people in the EIS, with participant recruitment explained in detail in our paper exploring young person and caregivers experiences of entry into an EIS [11]. In summary, 45 young people who experienced a FEP and were referred into an EIS in Melbourne between July 2016 and March 2017 were approached to participate in the study. ...
... When a case-manager was available to a young person who was passively engaged, for example through outreach, the young person interacted with the case-manager, and there was engagement within that interaction. Often the person's need was to understand the loss of identity experienced with psychosis, and to rebuild autonomy [11]. This contrasts with previous findings in studies with adult cohorts, for example Priebe, Watts, Chase and Matanov [17] who found that loss of identity and autonomy fueled disengagement with mental health services. ...
... Static demographic factors were not identified to be a primary deterrent or motivator for engagement, with personal characteristics, such as a collaborative and relaxed approach, being of more value. This correlates with what young people and their caregivers identified in Tindall, Allott, Simmons, Roberts and Hamilton [11]. However, case-managers identified having greater job satisfaction when the goals of the therapeutic relationship were matched with their specific professional skills (e.g., occupational therapist enjoying a focus on building meaningful activities). ...
Background:
A key component of case-management in early intervention services for first-episode psychosis is engaging a person with the service and building a relationship from which therapy and treatment can be facilitated. The aim of this study was to understand how case-managers at an early intervention service experience the process of engagement and working with varying levels of attendance and participation.
Methods:
Qualitative interviews were conducted with the case-managers of nine young people treated at an early intervention service for first-episode psychosis within 6 months of treatment entry. Interviews discussed the process of working with the young person and factors that influenced service engagement. Interviews were analyzed using thematic analysis.
Results:
Case-managers described a range of influences on engagement which were grouped under the themes: young person and caregiver influences on engagement, case-manager influences on engagement, and influences of the early intervention service system on engagement. The experience of engagement was described as relational, however it occurred in the context of broader influences, some of which were unable to be changed or challenged by the case-manager (e.g., resource allocation, models of treatment, young person demographics).
Conclusion:
This study illustrates the challenges that case-managers face when working with young people with first-episode psychosis, and the direct influence this has on engagement with treatment. Understanding these challenges and addressing them in policy and service design may lead to improvements in young peoples' recovery from first-episode psychosis and increase case-manager job satisfaction.
... For instance, the disparity in QoL between individuals with FEP and the general population persists beyond symptomatic remission, suggesting that psychotic symptoms alone do not produce poor QoL [1]. Moreover, the onset of FEP typically occurs in early adulthood and it has been found that young people with FEP value good QoL as an outcome more highly than symptom management [4]. Consequently, understanding heterogeneity in QoL and its associated features may help shift therapeutic focus from controlling symptoms to improving an individual's living environment and relationships -all of which are essential facets of QoL. ...
... The mean performance of the clusters on each QoL domain was compared using a series of one-way Analysis of Variance (ANOVA), followed by Tukey multiple comparisons. A profile analysis was conducted using the package profileR (Version 0. [3][4][5] to further confirm whether the identified clusters had different profiles in responding to QoL items (e.g. parallel, equal levels, or flatness). ...
Purpose
First-episode psychosis (FEP) is characterised by wide heterogeneity in terms of symptom presentation and illness course. However, the heterogeneity of quality of life (QoL) in FEP is not well understood. We investigated whether subgroups can be identified using participants' responses on four QoL domains (physical health, psychological, social relationships, and environmental) 18-months into the recovery phase of FEP. We then examined the discriminant validity of these subgroups with respect to clinical, cognitive, and functioning features of FEP.
Method
Demographic and clinical characteristics, QoL, cognition, and functioning were assessed in 100 people with FEP at the 18-month follow-up of a randomised controlled trial of Individual Placement Support, which aims to facilitate vocational recovery. QoL was measured using the World Health Organisation’s QoL-BRIEF. A two-stage clustering approach using Ward’s method and Squared Euclidean Distance with a k-means confirmation was conducted. Multinomial logistic regressions were used to establish external validity.
Results
Three QoL subgroups emerged: a ‘good’ subgroup with relatively high QoL across all domains (31%), an ‘intermediate’ subgroup with relatively low psychological QoL (48%) and a ‘poor’ subgroup with markedly low social relationship QoL (21%). Negative symptoms, depressive symptoms, social/occupational functioning, and social inclusion at follow-up predicted subgroup membership. Sensitivity analysis found similar results.
Conclusion
Although some individuals with FEP have QoL comparable to individuals without mental ill health, QoL can remain concerningly low despite treatment efforts. Future research on interventions that target factors associated with poor QoL, such as low social inclusion, is required to counteract prolonged poor QoL in FEP.
... A positive relationship with a support person incorporating trust and guidance is an important factor promoting engagement with traditional services for people with psychosis (Kilbride et al., 2013;Lecomte et al., 2008;Stewart, 2013;Tindall et al., 2018). ...
Background
Little is known about factors associated with engagement with online interventions for psychosis. This review aimed to synthesise existing data from relevant literature to develop a working model of potential variables that may impact on engagement with online interventions for psychosis.
Methods
Online databases were searched for studies relevant to predictors of engagement with online interventions for psychosis; predictors of Internet use amongst individuals with psychosis; and predictors of engagement with traditional psychosocial treatments for psychosis. Data were synthesised into a conceptual model highlighting factors relevant to engagement with online interventions for psychosis.
Results
Sixty-one studies were identified. Factors relevant to engagement related directly to the impact of psychosis, response to psychosis, integration of technology into daily lives and intervention aspects.
Conclusion
While several candidate predictors were identified, there is minimal research specifically investigated predictors of engagement with online interventions for psychosis. Further investigation examining both individual- and intervention-related factors is required to inform effective design and dissemination of online interventions for psychosis.
... Quantitative research has long suggested that the development of a secure therapeutic relationship is a predictor of positive therapeutic outcomes (Ardito & Rabellino, 2011), with research replicating this finding in therapy for psychosis (Browne et al., 2019;Priebe et al., 2011). However, the experience of psychosis is known to relate to potential difficulties engaging in therapy, such as paranoia impairing one's ability to relate to a therapist and hallucinations negatively impacting active engagement (Allott et al., 2018;Gottlieb et al., 2011). Research has also found elevated rates of insecure attachment in people experiencing psychosis Gumley et al., 2014), and this is known to limit the development of a secure therapeutic relationship Mikulincer & Shaver, 2012). ...
Objectives
Cognitive Behavioural Therapy for Psychosis (CBTp) demonstrates variable and at times mild to moderate effect sizes, thus its therapeutic processes are important to explore. Establishing a secure therapeutic relationship is one such key process where barriers may exist, including those related to psychotic symptoms and associated stigma. This review synthesizes the available qualitative research pertaining to the experience of the therapeutic relationship from the perspective of those experiencing psychosis.
Methods
A systematic review was under‐taken using PRISMA guidelines. Search terms included variants of ‘psychosis’, ‘therapy’ and ‘qualitative’. PsycInfo, CINAHL, EmBase, MedLine and Web of Science were searched and reference lists were hand‐scanned. Yardley’s quality appraisal tool was utilized and Noblit and Hare’s 7‐stage process for conducting a meta‐ethnographic review. A line‐of‐argument synthesis is presented.
Results
Fourteen papers were identified using inclusion and exclusion criteria. Twelve papers were deemed to have satisfactory quality. The line‐of‐argument synthesis used attachment theory to propose four semi‐distinct stages to establishing a therapeutic relationship; beginning; safety, hope and trust; the practicalities of therapy; branching out. Findings suggest that the therapist’s persona and use of CBTp techniques such as collaboration and shared agency over the process were important in establishing for the patient a sense of self as normal, equal and worthwhile.
Conclusions
Attachment security may be an important strand of CBTp and warrants further research and clinical investigation as a process and an outcome. Future research can benefit from increased transparency regarding researcher positionality as a potential source of bias.
Young people often rely on family carers to access support for their mental health. However, stigma can be a barrier to help seeking for young people and families. Little research has been undertaken with young people who experience highly stigmatised symptoms, such as psychosis spectrum symptoms, and even less research has been conducted with parents and carers, meaning barriers to help go unchallenged. Therefore, this narrative review aimed to explore stories of family experiences of seeking help for young people with symptoms associated with the psychosis spectrum. Sources searched were PsycINFO and PubMed. Reference lists of the selected papers were also cross-checked to ensure the search had not missed potential papers for inclusion. Searches returned 139 results, of which 12 were identified for inclusion. A narrative analytic approach was adopted to synthesise qualitative findings to provide a nuanced interpretation of help-seeking experiences. The narrative synthesis provided an opportunity to identify differences, similarities, and patterns across the studies to tell a cumulative emancipatory narrative of family experiences of seeking help for psychosis spectrum symptoms. Help-seeking experiences had a relational impact on families, with stress adding to conflict and anxieties inhibiting hopefulness, although families could emerge stronger and assertively with compassionate support.
Background
First-episode psychosis (FEP) refers to the first time someone experiences an episode of psychosis, which can be frightening and confusing, leading people to make their first contact with early intervention services. Early intervention is widely accepted as beneficial for long-term recovery and symptom management. A universal feature of intervention is a relationship with mental health practitioners. Therapeutic relationships experienced as positive are also associated with better outcomes across mental health settings. However, little is known about what is helpful within therapeutic relationships for people with FEP
Method
The current review aimed to develop a rich understanding of beneficial features of therapeutic relationships for people with FEP to enhance service delivery. Databases searched were: APA PsycInfo, MEDLINE Complete, CINAHL.
Results
A systematic search yielded 178 papers, of which 16 met the inclusion criteria. Publications reviewed were from Singapore, Western Finnish Lapland, England, Canada, the United States of America, Denmark, and Australia. The papers were published across 12 journals; 81% were qualitative, 12% were quantitative, and one was a mixed methods study.
Discussion
It is recommended that creating a safe space to talk, taking a non-judgemental approach, and developing trust between practitioner and client should be prioritised for people with FEP.
Purpose: First-episode psychosis (FEP) is characterised by wide heterogeneity in terms of symptom presentation and illness course. However, the heterogeneity of quality of life (QoL) in FEP is not well understood. We investigated whether subgroups can be identified using participants responses on four QoL domains (Physical Health, Psychological, Social Relationships, and Environmental) 18-months into the recovery phase of FEP. We then examined the discriminant validity of these subgroups with respect to clinical, cognitive, and functioning features of FEP.
Method: Demographic and clinical characteristics, QoL, cognition, and functioning were assessed in 100 people with FEP at the 18-month follow-up of a randomised controlled trial of Individual Placement Support, which aims to facilitate vocational recovery. QoL was measured using the World Health Organisation’s QoL-BRIEF. A two-stage clustering approach using Ward’s method and Squared Euclidean Distance with a k-means confirmation was conducted. Multinomial logistic regressions were used to establish external validity.
Results: Three QoL subgroups emerged: a ‘good’ subgroup with relatively high QoL across all domains (31%), an ‘intermediate’ subgroup with relatively low psychological QoL (48%) and a ‘poor’ subgroup with markedly low social relationship QoL (21%). Negative symptoms, depressive symptoms, social/occupational functioning and social inclusion at follow-up predicted subgroup membership. Sensitivity analysis found similar results.
Conclusion: Although some individuals with FEP have QoL comparable to individuals without mental-ill health, QoL can remain concerningly low despite treatment efforts. Future research on interventions that target factors associated with poor QoL, such as low social inclusion, is required to counteract prolonged poor QoL in FEP.
Background
Early Intervention in Psychosis Services (EIP) offer a unique service model for people experiencing a first episode of psychosis. They are intensive case-management services which adopt an assertive outreach approach, employing flexible boundaries to meet clients in the community, and support them towards recovery and holistic goals. Current boundary theory is therefore not easily applied to this clinical context.
This study aimed to explore how care-co-ordinators in EIP develop their understanding and practise around navigating boundaries.
Methods
Participants were 13 EIP care co-ordinators. Semi-structured interviews with participants were conducted and analysed using grounded theory.
Results
A concentric model emerged, defining different layers of influence impacting care co-ordinators’ navigation of boundaries. This included higher governing levels (e.g. professional codes of conduct), factors and challenges specific to EIP culture, client characteristics and individual care co-ordinator decision-making processes. A flexible, case-by-case approach was adopted in response to challenges.
Discussion
Findings suggest clinical implications for how care co-ordinators can jointly construct appropriate boundaries with clients and families, and discuss dilemmas using the team resource. This model can be used as a tool in clinical practice to aid clinicians’ thinking and reflection around boundaries within EIP.
Introduction:
Mental health inpatient treatment is necessary and increasing in adolescents due to their mental health vulnerability. Few studies have comprehensively reviewed adolescents' hospitalization experience.
Aim:
To gain an in-depth understanding of the mental health inpatient experience from adolescents' perspectives.
Method:
Six electronic databases, manual searches, and citation searches were completed for studies published within the last 10 years. Eight articles were included and thematic analysis was used. The Critical Appraisal Skills Program (CASP) checklist was applied to assess data quality.
Results:
Three main themes were identified: Experiences of hospitalization, Perceived outcomes, and Preparing for discharge. These themes included both positive and negative experiences.
Discussion:
The environment and interactions within the ward were critical to adolescents' nursing care. Positive relationship experiences were important for adolescents to adapt well and consequently achieve beneficial inpatient treatment results. Additionally, adolescents wanted to participate in the decision-making process related to their treatment during hospitalization.
Implications for practice:
Mental health nurses have a responsibility to be sensitive to adolescents' mental health status during hospitalization and to understand the significance of providers' support in leading them to recovery. Nurses need to establish a more stable ward environment and form positive relationships through respect for adolescents' intentions.
Aims
Building on a previous call for the development of sport-based life skills interventions for young people with FEP (Brooke, Lin, Ntoumanis, & Gucciardi, 2018), the objective of this study was to explore the barriers and enablers to sport participation for young people with FEP.
Method
We used a semi-structured interview format to conduct 1-1 interviews with young people (aged 16-25; n=10) with FEP, and 1-1 interviews and focus groups with their clinicians (n=33). Questions focused on barriers and facilitators (intrapersonal, interpersonal, psychological, environment, health/safety, logistical) to sport participation young people with FEP. Thematic analysis was used to analyse the data.
Results
Four themes (and eleven sub-themes) emerged from the analysis: 1) the need for sport in FEP recovery (perceived benefits; resource gap); 2) barriers (logistical; psychological); 3) enablers (positive environmental expectations and experiences); and 4) program design (sport program/type; life skills training; application to barriers/enablers).
Conclusion
The participants responded favourably to the idea of using sport to promote recovery post FEP, and provided an insight into why sport is currently underutilised within FEP recovery efforts. The barriers, enablers, and specific suggestions for how to limit the barriers and strengthen the enablers are valuable for sport-based intervention design, and may be applicable to non sport-based interventions for people with FEP.
Aim:
Evidence shows that many patients are detected and treated late in their course of illness, and that substantial delay occurs even after entry to mental health services. Although several studies have examined the service user and carer perspectives on treatment delay, few have explored the issue from the service provider perspective. The aim of this study was to broaden our understanding of treatment delay by exploring the service provider perspective on reasons for treatment delay in community mental health services.
Methods:
A qualitative study using data from focus group interviews with 33 healthcare professionals in community mental health care. Interview data were digitally recorded and transcribed verbatim, and analysed using a grounded theory approach.
Results:
Service providers perceived divergent or conflicting perspectives as the main challenge in early psychosis. Clinical negotiation was chosen as the main term describing the interactions between patients and healthcare professionals: This was observed in 3 overlapping areas: (1) Negotiating the patients status as help-seeker; (2) Negotiating the place and conditions of treatment and (3) Negotiating the meaning of distressing experiences and the timing of treatment options.
Conclusions:
This study suggests that delay in initiation of treatment for psychosis in community mental health is related to clinical challenges of early disengagement from services and diagnostic uncertainty. Service providers found negotiating the therapeutic relationship and patient-centred flexibility more useful in ensuring engagement than an assertive outreach approach. Diagnostic uncertainty was resolved through watchful waiting using a distress-overload conceptualization in assessing changes in mental state and service needs.
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.
To describe the core components of the Early Psychosis Prevention and Intervention Centre service model as the template agreed with the Australian Federal Government for national upscaling. The Early Psychosis Prevention and Intervention Centre model of early intervention has two main goals: to reduce the period of time between the onset of psychosis and the commencement of treatment and to bring about symptomatic recovery and restore the normal developmental trajectory as early as possible.
The Early Psychosis Prevention and Intervention Centre comprises three elements of service provision for young people experiencing a first episode of psychosis: (i) early detection; (ii) acute care during and immediately following a crisis; (iii) recovery-focused continuing care, featuring multimodal interventions to enable the young person to maintain or regain their social, academic and/or career trajectory during the critical first 2-5 years following the onset of a psychotic illness. It does this via a combination of 16 core components, which provide a flexible, comprehensive, integrated service that is able to respond quickly, appropriately and consistently to the individual needs of the young person and their family. Innovative service reforms, such as Early Psychosis Prevention and Intervention Centre, that recognise the value of early intervention are crucial to reducing the impact of serious mental illness on young people and their families and, ultimately, on our society.
Objectives:
This review examined rates and definitions of disengagement among services for first-episode psychosis (FEP) and identified the most relevant demographic and clinical predictors of disengagement.
Methods:
A comprehensive search for and review of published studies that reported rates and predictors of disengagement within FEP services were conducted. The databases PubMed (1966-2012) and PsycINFO (1882-2012) were searched. Relevant terms were used to search the Internet and the reference sections of relevant papers for other pertinent studies. Independent searches for recent publications by leading researchers in the field were also conducted.
Results:
Ten articles were included in the review. There was a lack of consensus on a clear definition of engagement and disengagement. However, despite differences in definitions and study settings, the evidence reviewed indicates that approximately 30% of individuals with FEP disengage from services. Variables that were consistently found to exert an influence on disengagement across studies were duration of untreated psychosis, symptom severity at baseline, insight, substance abuse and dependence, and involvement of a family member.
Conclusions:
Given the importance of continuity of care for FEP, there is a need for a clearly defined and agreed measurement of service engagement and disengagement across FEP services. In particular, those who enter an FEP program without family involvement and support as well as those who maintain persistent substance abuse are at higher risk of disengagement. Early identification of such individuals and the development of approaches to reduce risk of service disengagement are likely to increase the effectiveness of these services.
Guidelines for determining nonprobabilistic sample sizes are virtually nonexistent. Purposive samples are the most commonly used form of nonprobabilistic sampling, and their size typically relies on the concept of “saturation,” or the point at which no new information or themes are observed in the data. Although the idea of saturation is helpful at the conceptual level, it provides little practical guidance for estimating sample sizes, prior to data collection, necessary for conducting quality research. Using data from a study involving sixty in-depth interviews with women in two West African countries, the authors systematically document the degree of data saturation and variability over the course of thematic analysis. They operationalize saturation and make evidence-based recommendations regarding nonprobabilistic sample sizes for interviews. Based on the data set, they found that saturation occurred within the first twelve interviews, although basic elements for metathemes were present as early as six interviews. Variability within the data followed similar patterns.
Long duration of untreated psychosis (DUP) is associated with poor outcomes and low quality of life at first contact with mental health services. However, long DUP is common. In order to inform initiatives to reduce DUP, we investigated service users' and carers' experiences of the onset of psychosis and help-seeking in two multicultural, inner London boroughs and the roles of participants' social networks in their pathways to care.
In-depth interviews were conducted with service users and carers from an early intervention service in North London, purposively sampled to achieve diversity in sociodemographic characteristics and DUP and to include service users in contact with community organisations during illness onset. Interviews covered respondents' understanding of and reaction to the onset of psychosis, their help-seeking attempts and the reactions of social networks and health services. Thematic analysis of interview transcripts was conducted.
Multiple barriers to prompt treatment included not attributing problems to psychosis, worries about the stigma of mental illness and service contact, not knowing where to get help and unhelpful service responses. Help was often not sought until crisis point, despite considerable prior distress. The person experiencing symptoms was often the last to recognise them as mental illness. In an urban UK setting, where involved, workers in non-health community organisations were frequently willing to assist help-seeking but often lacked skills, time or knowledge to do so.
Even modest periods of untreated psychosis cause distress and disruption to individuals and their families. Early intervention services should prioritise early detection. Initiatives aimed at reducing DUP may succeed not by promoting swift service response alone, but also by targeting delays in initial help-seeking. Our study suggests that strategies for doing this may include addressing the stigma associated with psychosis and community education regarding symptoms and services, targeting not only young people developing illness but also a range of people in their networks, including staff in educational and community organisations. Initiatives to enhance the effective involvement of staff in community organisations working with young people in promoting help-seeking merit research.
This study described the views over time of young people referred to early intervention services (EIS), particularly as they relate to the importance of relationships.
A cohort of people aged 14 to 35 enrolled in a large multisite study of EIS for psychosis in the United Kingdom were recruited for a qualitative, longitudinal study in which they were interviewed within six months of admission to EIS and 12 months later. Transcripts of the interviews were analyzed using Charmaz's constructivist grounded-theory methodology.
A total of 63 individuals were interviewed during the six months after their first service contact, and 36 (57%) were interviewed 12 months later. Service users generally viewed IES key workers as supportive and youth sensitive, but up to one-third felt that the three years of sustained engagement expected was too intensive. Family support was highly valued by service users, and key workers and families worked well together to support the young people as they recovered. A significant minority of service users, however, reported feeling the emergence of a new self-identity, often associated with a sense of loss of the person they had felt themselves to be before becoming ill.
EIS for young people should provide not only the right type of engagement but also the right amount, recognize the very important role of families in giving both practical and emotional support and in liaising with key workers, and take into account the relatively rapid change in perceptions of personal identity that accompany illness.
Aim
Early intervention services (EISs) for first‐episode psychosis (FEP) have been established internationally, however, service disengagement is a recurrent concern resulting in unplanned treatment cessation. The implications of this are far‐reaching due to the financial and personal costs associated with untreated symptoms. The aim of this meta‐synthesis was to collect, interpret and synthesize qualitative research about how engagement is experienced within EISs for FEP.
Methods
A systematic search was conducted in PsycINFO, Ovid MEDLINE and Ovid Emcare from date of conception to November 2016. Following initial screening, 91 abstracts and 13 full texts were reviewed for eligibility. Nine studies were then critically appraised using the CASP tool for qualitative studies, data were systematically extracted and results were synthesized using constant comparison and reciprocal translational analysis.
Results
Nine qualitative studies explored engagement with EISs, from the perspectives of service users and their caregivers. No studies were found from the perspectives of clinicians or services. All 9 studies employed an inductive methodology, within an interpretivist epistemology. Five main themes were identified: experiences of finding help; factors promoting engagement; the therapeutic relationship; the role of caregivers in supporting engagement; and factors impacting ongoing engagement.
Conclusions
There is a critical need to stimulate discussion around this multifaceted phenomenon, including a continued focus on the roles of key stakeholders and clinical models that may further facilitate collaboration in treatment plans and recovery.
We conducted a study to explore how people diagnosed with first-episode psychosis experienced their contact with early intervention services for psychosis and the way these experiences relate to their recovery processes. Our aim was to integrate and describe the service users’ experiences in a rigorous and comprehensive way. A broad literature search was performed in June and July 2016. After screening, 17 qualitative studies were included. We analyzed the findings in two main steps: (a) translating studies into one another and (b) synthesizing the findings from the studies. Through these interpretative processes, we found five new and overarching themes: (a) something is wrong, (b) do for myself, (c) it’s about people, (d) a price to pay, and (e) ongoing vulnerability. We describe these themes as a process that service users’ maneuver through in their contact with the services. Our findings are discussed in light of relevant research.
Individuals living with serious mental illness are often difficult to engage in ongoing treatment, with high dropout rates. Poor engagement may lead to worse clinical outcomes, with symptom relapse and rehospitalization. Numerous variables may affect level of treatment engagement, including therapeutic alliance, accessibility of care, and a client's trust that the treatment will address his/her own unique goals. As such, we have found that the concept of recovery-oriented care, which prioritizes autonomy, empowerment and respect for the person receiving services, is a helpful framework in which to view tools and techniques to enhance treatment engagement. Specifically, person-centered care, including shared decision making, is a treatment approach that focuses on an individual's unique goals and life circumstances. Use of person-centered care in mental health treatment models has promising outcomes for engagement. Particular populations of people have historically been difficult to engage, such as young adults experiencing a first episode of psychosis, individuals with coexisting psychotic and substance use disorders, and those who are homeless. We review these populations and outline how various evidence-based, recovery-oriented treatment techniques have been shown to enhance engagement. Our review then turns to emerging treatment strategies that may improve engagement. We focus on use of electronics and Internet, involvement of peer providers in mental health treatment, and incorporation of the Cultural Formulation Interview to provide culturally competent, person-centered care. Treatment engagement is complex and multifaceted, but optimizing recovery-oriented skills and attitudes is essential in delivery of services to those with serious mental illness.
Aim:
To explore carers' and service users' experiences of UK Early Intervention Services following referral for first-episode psychosis.
Methods:
Thirty-two semi-structured interviews (16 interviews with service users and 16 corresponding interviews with their carers) were completed and analysed.
Results:
Carers spoke retrospectively and prospectively by framing their accounts into the periods before and since their engagement with Early Intervention Services. Desperation was evident as emotive experiences were recalled prior to referral. Relief then emerged as carers described support and engagement with key workers. Hope and optimism for the service user's prognosis and life trajectory were also expressed.Service users described similar positive experiences of Early Intervention Services and the support and insight they had gained through their relationships with key workers. They were however less focused on accounts of desperation and relief and more immersed in their current understanding and attempts to normalize their experiences of first-episode psychosis. Prognosis and future trajectories were only discussed tentatively.
Conclusion:
Communication and 'partnerships' with service users and carers are essential for effective service engagement, delivery of care and the reduction in relapse following first-episode psychosis. This study highlights how key workers from Early Intervention Services are appropriately valued and situated to develop such relationships. Findings also reveal that service users' and carers' focus and expectations of recovery vary during the early stages of engagement with services. How key workers manage awareness and communication around such differing expectations is a crucial consideration for maintaining the 'partnerships' necessary for effective service provision.
Aim:
Without treatment, clinically high-risk (CHR) youth or youth with first-episode psychosis (FEP) have increased risk for significant complications from their illness; yet, treatment engagement among these youth is critically low. The purpose of this study was to examine engagement efforts with CHR/FEP youth to stimulate new ideas that might facilitate participation in services for this population.
Methods:
A literature review using distillation methods identified engagement practices reported in two bodies of literature. The first body of literature (i.e. 'CHR/FEP engagement') included 13 studies employing qualitative designs to explore consumer perspectives about treatment engagement practices in samples of CHR/FEP youth and their families. The second body of research (i.e. 'CHR/FEP RCTs') included 18 randomized controlled trials (RCTs) testing treatments for CHR/FEP youth and their families. Engagement practice frequencies were compared with the frequency of these practices within effective engagement interventions, as tested in 40 RCTs within the broader child and adolescent mental health literature (i.e. 'CAMH engagement').
Results:
Treatment attrition and attendance were the most frequent engagement outcomes measured in the CHR/FEP RCTs. There were notable efforts described in the CHR/FEP RCTs towards engaging youth and families, yet CHR/FEP RCTs reportedly included only a small proportion of engagement practices described in either the CHR/FEP or CAMH engagement literatures.
Conclusion:
Results suggest there might be practices available to complement current efforts at engaging CHR/FEP youth in treatment, and that increased attention to the measurement of engagement outcomes could provide important information regarding engagement in a population with low treatment engagement rates.
Holistic treatment during a first episode psychosis (FEP) can significantly impact the longevity and chronicity of the illness, as well as reduce the risk of premature death by suicide. However, treatment can only be effective if the young person participates. Given that 19-40% of young people disengage from early intervention services for FEP, this qualitative study aimed to understand how young people experienced engagement with case managers at an early intervention service. Semistructured interviews were conducted with seven young people and themes were identified using interpretive phenomenological analysis. Young people detailed how engagement with a service could be viewed as a process, following different stages between initial referral and discharge. Throughout this process, a number of factors influenced young people's decision to engage with, or disengage from, their case manager. This created a push-pull dynamic with periods of good engagement and poor engagement. Discussion of this dynamic adds nuance to established scholarship about engagement, including shifts over time in the importance of client empowerment and valued features of therapeutic relationships. Awareness and understanding of these concepts may guide changes to early intervention services and address the core issue of engagement.
Executive Summary
Background
Individuals with a first-episode psychosis often have a prolonged and complicated path to accessing appropriate treatment. Research shows carers frequently initiate treatment though often delays remain even after problems have been detected. Qualitative studies have been conducted with the view to explore carers’ experiences and inform the exploration of factors contributing to a long duration of untreated illness. Minimising the impact of psychosis for individuals and improving outcomes remain a priority in Clinical Practice Guidelines in many countries. Understanding and improving pathways to care is crucial to this goal.
Objectives
To synthesize the best available evidence on the lived experience of carers of a relative with a first-episode psychosis and in particular their experience preceding and of seeking help.
Inclusion criteria
Types of participants
Carers of a relative presenting with a first-episode psychosis.
Phenomena of interest
Carers’ experience of a relative with a first-episode psychosis, and in particular their experience preceding and of seeking help from both informal (family and friends) and formal (services) sources.
Context
Research conducted in any mental health care setting.
Types of studies
This review considered a wide range of qualitative studies including but not limited to designs such as phenomenology, grounded theory, ethnography and action research.
Search strategy
Published and unpublished studies in English from January 1990 to August 2012 were identified by searching various electronic databases. Reference lists of all papers identified through this process were then searched for additional studies.
Methodological quality
Papers selected for retrieval were assessed by two independent reviewers for methodological validity prior to inclusion in the review using standardised critical appraisal instruments from the Joanna Briggs Institute Qualitative Assessment and Review Instrument (JBI-QARI).
Data collection
Data was extracted from identified papers using the standardised data extraction tool from JBI-QARI. The data extracted includes specific details about the phenomena of interest, populations, study methods and outcomes of significance to the review objectives.
Data synthesis
Research findings were pooled using JBI-QARI. Study findings were rated according to their quality, and categorized on the basis of similarity in meaning. These categories were then subjected to a meta-synthesis to produce a set of synthesized findings.
Results
Twenty-two studies were identified following appraisal that considered carers’ experiences of help-seeking for a relative with a first-episode psychosis. Five synthesized findings were derived from 16 categories and 213 findings.
Delays often begin at the stage of illness recognition. The main barriers to seeking help were fear of stigma and reluctance of the ill relative to participate in the process. A crisis and overt psychotic symptoms were the main promoters of active help-seeking and facilitators to accessing services. Service response was often viewed as a barrier to service access. A significant impact on carers of individuals with a psychotic illness was reported during the early stages of illness development, recognition, management and help-seeking. The impact for each family member may differ.
Conclusions
Delays in accessing appropriate treatment arise at the stages of illness recognition; help-seeking and service response. These areas were found to be interrelated. There was significant impact on carers throughout each of these stages. Various recommendations, particularly regarding clinical practice and education are made based on these findings.
Keywords
Carers; First-episode psychosis; Help-seeking; Qualitative; Systematic review
Dawson et al. Carers' experiences of seeking help for relatives with first-episode psychosis: a systematic review of qualitative evidence © the authors 2013 doi: 10.11124/jbisrir-2013-1133
There is a growing international effort to improve the rate of engagement with young people needing early treatment for psychosis. In this article I describe how a sample of 30 young people, who successfully engaged in treatment for a first episode of psychosis, experienced the process of engagement during the initial stages of care. Using a grounded theory approach and purposive sampling, I found that the nature of relationships among young patients and care providers is a factor that influences engagement. I also found that the transition between initial treatment and community care is a critical time for engagement. The success of this transition is marked by contact with client-centered-care providers and a supportive peer group culture.
Purpose:
Although there have been numerous studies on pathways to care in first-episode psychosis (FEP), few have examined the determinants of the pathway to care and its impact on subsequent engagement with mental health services.
Methods:
Using a sample of 324 FEP patients from a catchment area-based early intervention (EI) program in Montréal, we estimated the association of several socio-demographic, clinical, and service-level factors with negative pathways to care and treatment delay. We also assessed the impact of the pathway to care on time to disengagement from EI services.
Results:
Few socio-demographic or clinical factors were predictive of negative pathways to care. Rather, service-level factors, such as contact with primary care providers, have a stronger impact on patterns of health service use across multiple indicators. Patients who were in contact with primary care had a reduced likelihood of negative pathways to care, but also had longer referral delays to EI services. Socio-demographic and clinical factors were more relevant for predicting subsequent engagement with EI services, and indicators of negative pathways to care were not associated with service disengagement.
Conclusions:
Primary care providers may be an efficacious target for interventions aimed at reducing overall treatment delay. Increasing the uptake of primary care services may also reduce the likelihood of negative pathways to care. Our findings draw attention to the need for further investigations of the role that the primary care system plays in early intervention for FEP, and strategies for supporting service providers in this role.
The need for a measure of engagement with Community Mental Health Services has been identified. This article reports on the development and preliminary psychometric evaluation of a scale, Service Engagement Scale (SES), to measure engagement with community mental health services. Five Community Psychiatric Nurses completed the SES for 66 clients receiving Assertive Outreach services with an ICD-10 diagnosis of schizophrenia. Test-retest reliability of the subscale items and scale total is in the good to excellent range. Validity is supported by good internal consistency and by the criterion group method. Although preliminary psychometric results are promising, further psychometric study is necessary to evaluate the scale's factor structure. The SES appears to evaluate engagement with services, and may therefore be a useful tool to identify areas of concern with clients experiencing engagement difficulties.
The rise of the early intervention paradigm in psychotic disorders represents a maturing of the therapeutic approach in psychiatry, as it embraces practical preventive strategies which are firmly established in mainstream health care. Early intervention means better access and systematic early delivery of existing and incremental improvements in knowledge rather than necessarily requiring dramatic and elusive breakthroughs. A clinical staging model has proven useful and may have wider utility in psychiatry. The earliest clinical stages of psychotic disorder are non-specific and multidimensional and overlap phenotypically with the initial stages of other disorders. This implies that treatment should proceed in a stepwise fashion depending upon safety, response and progression. Withholding treatment until severe and less reversible symptomatic and functional impairment have become entrenched represents a failure of care. While early intervention in psychosis has developed strongly in recent years, many countries have made no progress at all, and others have achieved only sparse coverage. The reform process has been substantially evidence-based, arguably more so than other system reforms in mental health. However, while evidence is necessary, it is insufficient. It is also a by-product as well as a catalyst of reform. In early psychosis, we have also seen the evidence-based paradigm misused to frustrate overdue reform. Mental disorders are the chronic diseases of the young, with their onset and maximum impact in late adolescence and early adult life. A broader focus for early intervention would solve many of the second order issues raised by the early psychosis reform process, such as diagnostic uncertainty despite a clear-cut need for care, stigma and engagement, and should be more effective in mobilizing community support. Early intervention represents a vital and challenging project for early adopters in global psychiatry to consider.
Measures of perceived coercion at psychiatric hospital admission have been developed. We aimed to investigate predictors of perceived coercion in subjects admitted to psychiatric hospital in the UK, and to test the hypothesis that high perceived coercion at admission predicts poor engagement with community follow-up.
A cohort of consecutively admitted subjects were interviewed at admission and before discharge, and were followed prospectively for 10 months. Service use and compliance with care were rated from case notes and by clinicians.
One hundred interviews were obtained from 118 consecutive admissions (85%). Compulsory admission was strongly associated with perceived coercion, but one-third of voluntary patients felt highly coerced, and two-thirds were not certain they were free to leave hospital. Greater age, less insight, and non-white ethnicity were associated with high perceived coercion. Perceived coercion did not predict engagement with follow-up.
Services recognise provision of care in the least restrictive setting as a key objective. Perceived coercion should be regarded as an important outcome measure in service evaluation.