Experiences of engagement with early intervention services for first episode psychosis: a longitudinal, qualitative study

Abstract

Since the 1990s, many countries have established and embraced early intervention services for first episode psychosis as an essential component of mental health service delivery. Early intervention services aim to provide mental health treatment in a way that is accessible and acceptable to young people following a first episode of psychosis, whilst ensuring that treatment is high quality and evidence based. There is strong evidence for their effectiveness, however interventions are only successful if a person engages with them meaningfully. Dropout rates range between 6 and 60 percent, suggesting that early intervention services are variably meeting the needs of all the people using them. These dropout rates cannot be improved without first understanding the factors that influence a person’s decision to engage with, or disengage from, early intervention services. This thesis sought to add to our knowledge on this through two studies.

Study One, a systematic meta-synthesis of nine qualitative studies, aimed to collect, interpret and synthesise how engagement is experienced within early intervention services for first episode psychosis. The findings highlighted the importance of the therapeutic relationship, including the significance of collaboration and communication. Notably absent from the qualitative literature were multi-stakeholder perspectives of engagement over time, including a comprehensive understanding of the needs, roles and responsibilities of the key people involved and strategies that supported service engagement and re-engagement.

Study Two, a longitudinal, qualitative, multi-perspective study, aimed to understand how nine young people with first episode psychosis, their caregivers and their clinicians (total of 24 participants; nine case-study groups), experienced engagement and disengagement with an early intervention service over time. Data were collected over three time-points: 3-9 weeks, 4-7 months and 11-15 months after entry to the service, or at discharge if earlier (total of 55 qualitative interviews). Data on perspectives of engagement from the views of distinct participant groups at specific time-points were examined cross-sectionally, using thematic analysis. Multi-perspective experiences over time were examined longitudinally, using trajectory analysis.

Overall, the findings highlighted the importance attributed to personal connections established and maintained during the engagement process. However, a large proportion of factors contributing to disengagement, or reduced quality of engagement, were found to be systemic and related to service delivery and design. Notably, early intervention services promoted diagnostic-specific interventions which were not always aligned with the varied needs of young people and their caregivers. Subsequently, clinicians experienced difficulty being flexible and responsive to individual young person needs, especially when clinical assessment suggested that the young person had a transdiagnostic presentation. These findings broaden out the traditional conceptual frame of the therapeutic relationship, which emphasises the association between disengagement and personal factors such as amotivation, inability to attend a clinic setting or misalignment of goals.

Engagement is at the centre of mental health service provision. The two studies within this thesis have enhanced our theoretical understanding of engagement and disengagement, acknowledging that they are active and dynamic processes influenced by multiple relational, organisational and societal factors. To address disengagement, clinicians, services and policy designers need to deeply consider how to improve the interpersonal experience between young person, caregiver and clinician. This thesis suggests actions that can be taken on an individual clinician level (i.e., reflective supervision), service level (i.e., resource allocation) and policy level (i.e., a move towards transdiagnostic models of care). Any actions taken will greatly influence how successful participation in mental health treatment will be, resulting in better outcomes for the person, their caregivers, services and society.