Reflection on Experiences of Alteration of Lived Self and Reality: Development of self-report items to track changes

Psychosis is currently defined as a mental disorder characterized by the
presence of distortions in perception (hallucinations), false beliefs
(delusions), and disorganization. The high burden associated with psychotic
disorders prompted the screening of people who have a high risk of developing
psychosis (i.e., UHR) in order to prevent transition to psychosis through early
intervention (Nelson et al., 2013). However, predicting psychosis transition
remains challenging, partly because UHR criteria predominantly rely on
non-specific observable subclinical psychotic symptoms like odd behaviors or
perceptual disturbances (Nelson et al., 2013; Nelson & Raballo, 2015). The UHR
framework falls short on capturing the subtle and often difficult to describe
experiential alterations reported by UHR individuals and people with lived
experience of psychosis (Fusar-Poli et al., 2022). Phenomenological researchers
challenge the current definition of psychosis as a disturbance of perception
and false beliefs, emphasizing the experiential dimension and the active
meaning-making process that individuals engage in (Feyaerts et al., 2021a;
Feyaerts & Sips, 2023; Ritunnano et al., 2022; Sass 2019). This perspective
enables an exploration of alterations in the experience of self and reality
that can help to understand psychosis development. Exploring alterations in
experiences of self and reality and the contexts within which these experiences
occur holds the potential to yield insights into the factors contributing to
the transition into psychosis.

The phenomenological approach to subclinical psychotic symptoms has resulted in
a comprehensive model *the Basic Self-Disturbance (BSD) model*which describes
alterations of pre-reflective consciousness that may predict psychosis onset
(Nelson et al., 2012; Sass et al., 2018). This alteration manifests in
heightened self-consciousness (hyperreflexivity) and an altered sense of being
an engaged and unified subject of awareness and action (Sass et al., 2018;
Nelson & Raballo, 2015; Feyaerts & Sass, 2023). Over time, these processes are
suggested to result in a blurred boundary between self and world, leading to an
altered grip on reality. BSD-processes are typically assessed with the
semi-structured interview the Examination of Anomalous Self Experience (EASE,
Parnas et al., 2005). However, the EASE is an observer-rated instrument
unsuited to assess moment-to-moment fluctuations of pre-reflective
self-experiences, given that the scoring of EASE items is too extensive for
momentary assessment. Moreover, it explicitly excludes experiences that exhibit
temporal instability which potentially contributes to an inflated perception of
the temporal stability of these phenomena. Psychosis research may benefit from
studying the variability in experiences of self and reality over time and in
the natural context of individuals (Nelson et al., 2017), thereby also
exploring the influence of the context on these experiences. To gather data on
moment-to-moment fluctuations, validated self-report experience-sampling
measures of alterations in self and reality experiences are required. However,
such items are currently not available.

In the current study, we aim to address this research gap by developing
self-report items for self and reality experiences and contextual variables
that lend themselves to moment-to-moment assessment. This involves an initial
qualitative exploration of subjective experiences of self and reality, the
identification of common themes derived from the interview transcripts, the
determination of necessary adaptations for their use in quantitative experience
sampling methods (ESM), and subsequent development of self-report items
assessing alterations in self and reality experiences over time.
We expect that this study will contribute to comprehending the lived
experiences of individuals who experienced psychosis and eventually improve
current UHR-criteria. The initial qualitative study ensures that the
development of ESM-items not only draws on top-down theoretical criteria (e.g.,
Basic Self Disturbance) but also integrates first-person accounts from
individuals with lived experiences in a bottom-up way.

Primary objective:
The primary objective is to answer the following research question:
1. How do people who transitioned to psychosis describe alterations in their
experiences of self and reality prior to the first psychotic episode?
2. Are these alterations in the experience of self and reality related to
specific contexts, and if so, how?

Secondary Objective:
The secondary objective is to develop self-report items based on the
experiences of self and reality that participants in the study report. To do
so, we aim to answer these research questions:
3. What are valid ESM-questions to investigate the reported alterations in
experiences of self and reality?

This is a qualitative exploratory study in the north of the Netherlands and
Belgium (Vlaanderen) with four phases (Figure 1) lasting from summer 2024 to
approximately winter 2024: 1) Prior to conducting interviews, discussions will
take place with people with lived experience of psychosis (recruited via GGZ
Drenthe, UCP Groningen, RGOC) to create an interview guide, ensuring the
inclusion of a comprehensive yet non-exhaustive list of relevant experiential
alterations in self and reality. 2) Qualitative semi-structured interviews will
be conducted to assess which anomalous self and reality experiences are
reported by participants with lived experience of psychosis (see section 7.2
study protocol for recruitment). The main focus of the interviews will be to
capture how participants describe their experiences in their own words,
ensuring that the resulting data aligns as closely as possible with people's
lived experiences. The interviews will follow an open style to encourage
participants to provide their own examples and explore experiences not covered
by the orienting topics. 3) Interviews will be audio-recorded and transcribed
to identify codes and common themes through thematic analysis (Braun and
Clarke, 2006). Two coding schemes (inductive, deductive) will be developed to
relate the reported experiences to phenomenological theory (BSD, EASE, EAWE;
Examination of Anomalous World Experience, Sass et al., 2017) while also
enabling the inclusion of experiences not mentioned in phenomenological theory.
4) Themes will be translated into self-report items which will be evaluated by
researchers and study participants for use in a future ESM study. Study
participants will provide feedback on the items.
The qualitative study design is crucial to maintain a phenomenological
focus on lived experiences during the constructing of self-report items. After
identifying relevant domains of anomalous self and reality experiences,
self-report questions for moment-to-moment assessment can be developed.

The risks associated with participation in this study can be considered
negligible as the target population are patients in out-patient treatment which
are not acutely psychotic. Participants are interviewed once about their own
experiences (duration 1-2 hours). The interviewing location is determined
together with the participant. Participants know beforehand that the aim of
this study is to investigate their subjective experiences. Although reflection
on past experiences with psychosis can be considered burdensome, the content of
psychotic experiences (e.g., delusionary ideas) are not of primary interest to
this study. Rather, this study wishes to explore subjectivity and the form of
experiences in participants that are not acutely psychotic. There are no
immediate benefits for participants associated with participation in this
study. However, participation in this study means that participants support the
researchers in their endeavour to better understand psychosis and psychosis
development. Furthermore, participants can play an active role in making sure
that the development of self-report items of anomalous experiences of self and
reality is informed by their experiences. The potential long-term benefits of
this include the possibility of future interventions based on the detection of
early-warning signals of psychosis. Since the aim of the study is to
investigate subjective experiences of self and reality in individuals with FEP-
status, this research cannot be conducted with other groups.