We Need to Talk: A Qualitative Inquiry into Pathways to Care for Young Men at Ultra-High Risk for Psychosis
Håkon Olav Åmlid
School of Law, Psychology and Social work, Örebro University Master thesis in clinical psychology, 30 HP
Supervisor: Jan Carlsson
Co-supervisor: Wenche ten Velden Hegelstad Spring 2021
Abstract
A modern conceptualization of psychotic disorders is as neurodevelopmental disorders, with different stages characterized by discrete clusters of symptoms. This conceptualization
includes a stage of pre-psychotic prodrome, a target of contemporary research as an attempt to intervene before the development of psychosis. However, these at-risk individuals rarely present to the mental health services before transitioning into psychosis, even more so for male patients. In this study, a method of inductive thematic analysis has been employed to inquire into the pathways to care for young men at Ultra-High Risk (UHR) for psychosis to gain knowledge of- and generate hypotheses about pathways to care for this group. Data was collected using semi-structured interviews (n = 9) over video conference or telephone. Three core-themes were developed as “Willingness to Disclose Distress”, “The Gatekeeping
Confidant”, and “The Boiler”, with “Openness” as a core organizing category permeating the core-themes. Together, the themes represent findings on both the importance of relations in help-seeking, as well as how the young men commonly employ non-disclosure, and how this lack of openness delays pathways to care, often resulting in adversities for the participants. Findings provide implications for further inquiry into how to increase the likelihood of young men to disclose distress, as well as providing additional rationale for the development of Mental Health Literacy in the public to make peers as well as participants more able to recognize symptoms of the pre-psychotic prodrome, when, where and how to seek help.
Contents
Introduction ... 5
Interventions in Psychotic Disorders ... 6
The Concept of Ultra-High Risk for Psychosis ... 7
Pathways to Care and Psychotic Illness ... 9
Summarizing the Introduction ... 11
Aim ... 12 Method ... 12 The Setting ... 12 Choice of Method ... 13 Participant Selection ... 14 Participant Recruitment ... 14 Participants ... 15 Interviews ... 16
The Analytic Process ... 17
Familiarising yourself with the data ... 17
Generating initial codes ... 18
Searching for themes ... 18
Reviewing themes ... 19
Defining and naming themes ... 19
Producing the report ... 20
Member Checking and The Second Round of Interviews ... 20
The Researchers’ Perspective ... 20
Ethical Considerations ... 22
Results ... 23
1. Core Theme: Willingness to Disclose Distress ... 24
1.1 Sub theme: Recognizing Symptoms of Mental Illness ... 25
1.2 Sub theme: Perceived stigma ... 26
1.3 Sub theme: Modelling a Man ... 28
1.4 Sub theme: The Influence of Symptoms ... 30
2. Core theme: The Gatekeeping Confidant ... 32
2.1 Sub theme: Knowledge of Psychiatric Symptoms ... 33
2.2 Sub theme: Where to Go ... 34
3. Core theme: The Boiler ... 36
3.1 Sub theme: It Works in the Short-Term ... 37
3.2 Sub theme: Letting Off Steam ... 38
Central Organizing Category: Openness ... 39
Discussion ... 40
Willingness to Disclose Distress ... 41
The Gatekeeping Confidant ... 43
The Boiler ... 44
Mental health literacy ... 44
Strengths and Limitations ... 47
Generalizability and Transferability ... 47
The Sample ... 48
Retrospective Stories ... 48
Bias ... 48
Clinical Implications and Guidelines for Future Research ... 49
Conclusion ... 50
References ... 52
Appendix 1: Interview Guide ... 60
Appendix 2: POP II Consent Form ... 63
We Need to Talk: A Qualitative Inquiry into Pathways to Care for Young Men at Ultra-High Risk for Psychosis
The schizophrenia spectrum and other psychotic disorders are a debilitating cluster of disorders characterized by an acute phase of delusions, hallucinations, disorganized thinking, disorganized motor behaviour and negative symptoms (American Psychiatric Association, 2013). The disorders usually strike during early adulthood, with around one percent of the global population affected by schizophrenia spectrum disorders and their commonly adverse effects on the lives of the individuals (Insel 2010; Millian et al., 2016; Uhlhaas et al., 2020). A literature review by Miller et al., (2014) showed that schizophrenia sprectrum disorders were associated with long-lasting negative health habits, increased frequencies of cardiovascular disease as well as both cognitive and social impairment. Life-expectancy in patients with schizophrenia spectrum disorders is reduced by 15 to 20 years, both as a consequence of increased mortality from conditions such as cardiovascular disease, but also as a consequence of increased rates of suicide and substance abuse within the group (Miller et al., 2014; Ringen et al., 2014; Rössler et al., 2005; Wahlbeck et al., 2018). The potentially severe implications of the disorders have led contemporary research towards attempts to intervene as early as possible, attempting to prevent the development of the disorders altogether (Insel, 2010).
A modern conceptualization of schizophrenia spectrum disorders is as being neurodevelopmental, with the acute phase of psychosis assumed to be the late stage of the disorder rather than the disorder itself (Insel, 2010). Insel (2010) proposes conceptualizing schizophrenia in four distinct stages: a pre-symptomatic risk stage, pre-psychotic prodrome, acute psychosis and chronic illness. The pre-symptomatic risk stage is before the onset of any symptoms and refers to a stage of genetic vulnerability and genetic interaction with the environment predisposing the individual for developing psychosis and schizophrenia (Insel, 2010). Following the pre-symptomatic risk stage, the pre-psychotic prodrome is characterized
by cognitive, behavioural, and social deficits resulting in a change in school and social functioning (Insel, 2010; McGorry et al., 2008). Following the pre-psychotic prodrome, the acute psychosis manifests as hallucinations, delusions, abnormal thinking and motor
behaviour and negative symptoms (Insel, 2010). The chronic illness stage is not reached by all individuals suffering from the illness but refers to the chronic disability associated with the disorders, and how the deficits often lead to unemployment, homelessness, and incarceration (Insel, 2010).
Research on gender differences in schizophrenia spectrum disorders and first-episode psychosis, indicates that the incidence of schizophrenia is slightly higher in men, with men having an earlier onset of illness (Cascio et al., 2012; Ochoa et al., 2012; Rössler et al., 2005). Further inquiry into gender differences in schizophrenia spectrum disorders and other
psychotic disorders has yielded evidence that in addition to having an earlier onset, and a higher incidence of the disorders at a young age, men seem to cope worse with their illness than women. Over a 20 year period, men showed a lower, and less consistent pattern of recovery, as well as a poorer global outcome when compared to women (Ferrari et al., 2018; Grossman et al., 2008).
Interventions in Psychotic Disorders
Traditionally, interventions in psychosis and the schizophrenia spectrum have revolved around the acute psychotic phase (Millian et al., 2016), with little evidence
indicating these interventions having lasting effects on the pathophysiology of the disorders (Insel, 2010; Millian et al., 2016). Consequently, much research has been focused on reducing the duration of untreated psychosis (DUP), to improve the functional outcomes after suffering a first-episode psychosis (FEP) (Millian et al., 2016). FEP refers to the time from onset of first-episode psychosis to the first administration of antipsychotic medication (Judge et al., 2005). A longer DUP is associated with more adverse functional outcomes for the patient,
such as increased positive symptoms of psychosis, as well as reduced vocational and social functioning when compared to individuals with a shorter DUP (Addington et al., 2004; Judge et al., 2005).
Among other studies, the Scandinavian early treatment and intervention in psychosis (TIPS) project has indicated that early interventions focusing on reducing DUP are associated with higher recovery rates as well as a more advantageous functional outcome for patients suffering from psychosis (Hegelstad et al., 2012). In the TIPS project, both information campaigns and detection teams have been used in the Stavanger catchment area reducing median DUP from 16 to 5 weeks (Johannesen et al., 2001; Melle et al., 2004) The effects of early intervention have been furtherly supported by a meta-analysis conducted by Correll et al., (2018) which indicated that early-intervention was superior to treatment as usual on a wide spectrum of parameters such as psychotic symptoms, bed-days, and global functioning. Following the promising findings of early intervention considering a neurodevelopmental conceptualization of the disorders, a modern paradigm in psychosis research is focused on the possibility of preventing the development of psychosis altogether by targeting the
pre-psychotic prodrome (Insel 2010; Joa et al., 2015; Millian et al., 2016). The Concept of Ultra-High Risk for Psychosis
The pre-psychotic prodrome can be operationalised as Ultra-High-Risk (UHR) for psychosis and refers to a period of sub-clinical psychotic symptoms associated with the pre-psychotic prodrome (Insel, 2010; McHugh et al., 2018; Yung & McGorry 1996). The UHR state is a concept consisting of three standardised criteria. The first criterium is genetic
vulnerability, and whether the individual has a) a first-degree relative with psychotic disorder, or b), meets criteria for schizotypal personality disorder (McHugh et al., 2018). The next criterium refers to whether the individual has suffered a period of sub-threshold positive symptoms in the past year and is referred to as Attenuated Psychotic Symptoms (APS)
(McHugh et al., 2018). The last criterium is Brief Limited Intermittent Psychotic Symptoms (BLIPS) and refers to psychotic symptoms lasting for less than a week and resolves
spontaneously without intervention (McHugh et al., 2018). To assess whether the individual belongs to the UHR group, the Structured Interview for Psychotic-Risk Syndromes (SIPS) is used, and individuals are defined with UHR if they fulfil the requirements for one or more of the criteria (McGlashan et al., 2001).
Despite the individuals not yet having transitioned into psychosis, the UHR condition is associated with significant suffering and decline in cognitive, behavioural, and social function (McGorry et al., 2008). Being diagnosed with the UHR state is associated with a ~20% likelihood of transitioning into a FEP (Joa et al., 2021), and is currently one of the most accurate predictors of whether an individual will transition into psychosis (Radua et al., 2018). Individuals who are diagnosed with the UHR state are usually men (58 %) in their early twenties, being identified as having the UHR state due to disclosure of APS (Fusar-Poli et al., 2020). They seem to seek help in specialized mental health services with suicidal ideation, self-harm, and suicide attempts, and whether they will transition into psychosis seems to be best predicted by the severity of negative symptoms such as social withdrawal and reduced affect (Fusar-Poli et al., 2020)
Even with knowledge of different factors predicting of whether an individual will transition into FEP, only a small proportion of individuals are detected in the prodromal stage. According to recent research by (Joa et al., 2021) and a recent meta-analysis by Fusar-Poli, et al., (2020), a meagre 5-12 % of at-risk individuals are detected before transitioning into their first-episode psychosis. The small proportion of UHR individuals presenting to and being identified by the health services is currently an obstacle in the research as it indicates that current strategies for identifying UHR individuals are ineffective, consequently not allowing us to intervene with the majority of UHR patients. Thus, knowledge about what influences
help-seeking, and subsequently how to promote it is warranted to accurately target and intervene with the group before the development of psychosis (Fusar-Poli et al., 2020; Insel, 2010).
Pathways to Care and Psychotic Illness
Pathways to care refers to the “the sequence of contacts with individuals and
organizations prompted by the distressed person’s efforts, and those of his or her significant others, to seek help as well as the help that is supplied in response to such efforts” (Rogler & Cortes, 1993, p. 555). Pathways are furtherly defined as starting at an identifiable point in time, with help-seeking interactions between the individual, and peers in their surroundings, grounded in psychological distress (Rogler & Cortes, 1993). The culmination of the pathway to care may refer to different instances where the individual receives appropriate help for their distress, but for the sake of simplicity, in this study the culmination of the pathway is when the individual receives help in the specialized mental health services.
Despite typically having an earlier onset of schizophrenia spectrum and other psychotic disorders, as well as being more common in the UHR group, men tend to be
overrepresented in the FEP group and underrepresented in the UHR group when presenting to the mental health services (Falkenberg et al., 2015; Wilson et al., 2015). This may imply that men are less help-seeking in the prodromal phase of illness, making inquiry into pathways to care for men relevant to examine (Wilson et al., 2015).
Common obstacles in pathways to care for at-risk individuals, and individuals experiencing a first-episode psychosis are diverse, and tend to be related to stigma, gender-roles, and recognition of symptoms as part of severe mental illness. (Falkenberg et al., 2015; Gronholm et al., 2017; Wilson et al., 2015). Stigma was related to a sense of difference, anticipated and experienced negative reactions from their environment, a lack of knowledge
about mental illness, and mental health service factors such as negative beliefs about the services (Gronholm et al., 2017).
More specific findings for male help-seeking indicated that men avoided help-seeking due to an attitude of having to be strong and in control, consequently employing external strategies such as drug abuse to cope with their symptoms (Ferrari et al., 2018; Good et al., 1989; Tanskanen et al., 2011). Wilson et al., (2015) suggested another perspective on male help-seeking, by proposing that men tend to be less willing to seek help for lower levels of psychological distress, which could be a factor in why men tend to be overrepresented in the group presenting for FEP. This might be related to findings made by Judge et al., (2005), where the ability to recognize symptoms as a part of mental illness seemed to be the most common barrier to care. However, this does not mean that men are unable to recognize changes in their psyche, but rather seems to be related to a reluctance or inability to consider their symptoms as part of a serious mental disorder (Gronholm et al., 2017; Judge et al., 2005; Wilson et al., 2015). This can be seen in the light of a meta-analysis by MacDonald et al., (2018), where findings indicated that the individual only initiated help-seeking in 16 % of the cases, with family and friends being the most frequent agent of initiating help-seeking. What this may imply, is that an important aspect of receiving help is the ability of peers to
recognize that the individual is struggling.
Qualitative research on pathways to care for both UHR individuals, and individuals suffering FEP seems to be in line with much of the quantitative research done on the topic. Hardy et al., (2009) found that individuals admitted to the need of seeking professional help upon aggravation of psychotic symptoms, leading to an increased perception of needing help. Similar findings were also made in Tanskanen et al., (2011) and Bay et al., (2016), where the person experiencing symptoms often would not attribute distress to psychosis, often leading to the individual suffering being the last one to recognize their FEP. Another common response
associated with not attributing symptoms to psychosis was believing the symptoms to be transient, consequently leading to the individual realizing the need for help only when distress culminated in crisis (Tanskanen et al., 2011). The help-seeking process of the individual was usually riddled by inability to recognize symptoms, stigma, and unhelpful coping-strategies. Consequently, the support of family, friends and other immediate relations was an important factor influencing the pathway to care (Bay et al., 2016; Connor, et al., 2014; Hardy et al., 2009; Tanskanen et al., 2011). Family, friends and immediate relations often were the first to notice changes in the individual, and motivated them to initiate help-seeking in the mental health services (Tanskanen et al., 2011). This however implies a need for general knowledge about psychiatric symptoms in social networks and society, for these individuals to be able to correctly identify symptoms. Connor et al., (2014) inquired into the role of family in the help-seeking process. They found that the main obstacle to family noticing the development of psychotic symptoms was related to increased emotional and social withdrawal, as well as attributing bizarre behaviour as a teenage phase.
A common precipant for help-seeking in the UHR group seems to be aggravation of affective symptoms such as anxiety and depression (Falkenberg et al., 2015; Rietdijk et al., 2011). In the study by Judge et al., (2005), the most common precipant of receiving help was aggravation of psychotic symptoms as well as suicidal ideation. This may indicate is that the individual may not seek help unless the symptoms cause subjective suffering, or that someone in their environment recognizes that they are suffering.
Summarizing the Introduction
Schizophrenia spectrum disorders and other psychotic disorders are associated with great suffering, both for the individual, their families, and their friends. Males seem to suffer a higher incidence of both the ultra-high-risk state, as well as the disorders, but are less likely to present to mental health services before converting into a FEP. The disorders strike early in
life, often leading to many years burdened by their effects, thus, modern research has inquired into the possibility of preventing the development of the disorders altogether. One of the major obstacles in contemporary research seems to be that individuals at UHR tend to present to the mental health services only after converting into psychosis, warranting more research regarding how to detect UHR individuals before transitioning into psychosis.
Aim
A qualitative approach to the topic was deemed most appropriate due to both the explorative nature of the study, as well as the low prevalence of the relevant sample.
Consequently, the aim of this study is to provide insight into what influences the pathways to care for young males at risk for developing psychotic illness, as well as contribute to develop hypotheses on how to facilitate help-seeking in this group, with the research question being: What influences pathways to care for young males at risk for developing psychosis?
Method
The Setting
The University Hospital of Stavanger (SUS) hosts two projects involved in the treatment and prevention of psychosis in the Stavanger catchment area: the Scandinavian Early Intervention in Psychosis (TIPS) project (https://www.tips-info.com/) - targeted at the FEP group, and the Prevention of Psychosis II project (POP II) – targeting the UHR group (Joa et al., 2015; Johannesen et al., 2001). Both TIPS and POP II are clinical research
programmes employing information campaigns and early detection teams with the intention to both reduce DUP, as well as detect and prevent the development of psychotic illness in the prodromal stage. This study came to be a part of the POP II project, a successor to the original POP project, in which the intention was to increase detection of UHR individuals in the Stavanger catchment area using targeted information campaigns and early detection teams
(Joa et al. , 2015). Following the findings in the original POP project, POP II was launched to enhance early detection, facilitate provision of treatment, and prevent psychosis-like
experiences in the UHR group through further improving on the strategies employed in POP (Regionale komitéer for medisinsk og helsefaglig forskningsetikk, 2020).
This study is intended to contribute to the POP II project through inquiring into what influences the pathway to care for young males at risk for psychosis, with the goal of
generating hypotheses for further quantitative research, as well as broadening the understanding of what influences the young males’ help-seeking process.
Choice of Method
For the project, the methods of conducting qualitative research as described by (Braun & Clarke, 2013) were implemented. A qualitative approach to the research question was deemed most appropriate as the intention was to analyse the experiences of young males from their points of reference, with the subjectivity, complexity, and richness their stories might have had (Braun & Clarke, 2013).
Data was collected using semi-structured interviews, and to analyse the data, inductive thematic analysis (hereafter abbreviated TA) was used. TA is a method of analysis in which one attempts to identify themes and patterns of meaning across the data corpus in relation to the research question (Braun & Clarke, 2006). One of the strengths of TA is that it is
relatively easy to learn compared to other methods of analysis, presenting itself as a viable alternative for researchers without much experience with qualitative method (Braun & Clarke, 2013). When conducting TA, we have the options of using the data to identify themes using predetermined theoretical concepts or frameworks to analyse the data (deductive TA), or develop themes based on what is found in the data corpus regardless of any theoretical preconceptions (inductive TA) (Braun & Clarke, 2013). One could discuss whether a
deductive approach could be employed in this project, but as research on pathways to care for males with UHR is limited, and the intention of the project being an exploratory inquiry into this topic, inductive TA was deemed most appropriate.
Participant Selection
For selection of participants, criterion sampling was used. Criterion sampling refers to seeking out participants meeting a specific criterion, or criteria for investigation (Braun & Clarke, 2013). In this project we were interested in young males who had either been identified as being at UHR for psychosis, or who had transitioned into psychosis. An issue concerning the UHR group was that the group of males who had presented for- and been identified as having UHR was quite small. Interviewing exclusively UHR-males would not have been practically feasible within the timeframe of this project due to few UHR-males being available in the TIPS/POP II database. This would result in a risky sampling process, consisting of waiting for potential UHR-males to be identified in POP II, with the additional risk of them declining participation. As a result of this, the decision was made to also include individuals who had transitioned into psychosis. This was considered reasonable as the males who had transitioned into psychosis could provide important information regarding pathways to care as they theoretically should have been included in the UHR group at some point before developing psychosis.
Participant Recruitment
Based on the inclusion criteria, 14 potential informants were suggested from the TIPS/POP II database, which were then contacted over telephone regarding interest in
participation. The study was presented to participants as “an inquiry into pathways to care for young males with an increased risk for psychosis, or who had transitioned into a psychosis at
some point, an area of interest as males present to health systems with a longer duration of untreated illness and tend to not present to health systems before transitioning into psychosis”.
In qualitative research, there are no hard rules for sample sizes as in quantitative research due to the interest being inquiring into the richness of an experience, rather than making arguments through statistical power (Braun & Clarke, 2013). However, there are some general guidelines one can use to assess whether the sample is adequate. Braun & Clarke (2013) presents a general recommendation that when analysing interviews using Thematic Analysis in a small project, 6-10 interviews are usually adequate. Considering the general recommendations regarding saturation in qualitative research, and what was expected to be practically feasible for a single researcher, the goal was to achieve a sample of 8-12 informants.
Another way to assess whether our results are adequate is through looking at the degree of saturation in the data. Saturation in qualitative research refers to when additional sources of information fail to yield new information (Braun & Clarke, 2013), and can be used to assess whether our sample is large enough to cover the main concepts of interest. In this project, saturation was assessed by employing a triangulation of methods, conducting one interview after the analysis was finished, and used the framework developed from the first round of interviews to deductively analyse the final interview. The intention was to conduct two interviews in the second round, but as the other potential participant did not respond, only one additional interview was performed.
Participants
For the first round of interviews, twelve potential participants were contacted for participation, of which one did not respond, two declined participation, and one did not show for the interview, leaving eight participants who agreed to- and completed the first interview
round. One additional participant was interviewed in the second interview-round, leaving a total of nine participants. All participants were males aged 17-23, four of them being included in the POP II project, identified as being at ultra-high risk for developing psychotic illness, and four had transitioned into psychosis including them in the TIPS project. Eight participants were of white-Norwegian heritage, whereas one participant was of south-east Asian heritage. Interviews
Nine interviews were conducted in the study, and all interviews were conducted remotely, with six informants being interviewed over Norwegian Healthnet’s encrypted video conference service “Join”, and two informants being interviewed over telephone.
The knowledge about pathways to care was limited, and so the interview guide was developed on the assumption that both internal factors (the informants’ experience) and external factors such as family, friends or society would influence the pathways to care, but did not assume specifics of what would influence the informants. In line with
recommendations made by Braun & Clarke (2013) the interview guide (appendix 1) was designed with two main topics: external and internal factors, with each topic starting with open-ended questions allowing the informant to freely describe their experience, before funnelling into more specific questions based on the informants’ story. Which topic one started talking about was determined by an overarching question about what they felt influenced their pathway to care. As the interviews touched upon distressing periods in the lives of the participants, the interview ended with general questions about beliefs about the mental health system and society to avoid leaving the informant in a state of distress upon ending the interview, as well as assess how the informant was feeling, in line with
Following the first interview, the guide was assessed regarding whether it was viable to answer the research question. The decision was made to include an overarching open-ended question to start off the interview, as this allowed for the participant to start with what they deemed most important and describe their story more freely instead of the interviewer dictating what they should start with.
The Analytic Process
The analysis was conducted in line with recommendations made in Braun & Clarke, (2006) and Braun & Clarke, (2013) as illustrated in figure 1:
Familiarising yourself with the data
Initiating the analysis, recordings of the interviews were transcribed, read, re-read and initial ideas and impressions were noted. The interviews were conducted and transcribed in Norwegian, and quotes were translated into English upon inclusion in the report. When transcribing the recordings, filler words such as “eh” and “ah” were written out, meaningful
Producing the report Defining and naming themes
Reviewing themes Searching for themes Generating initial codes Familiarising yourself with the data Figure 1:
pauses were indicated by three full stops, and meaningful sounds such as laughter were indicated in parentheses.
Generating initial codes
Before coding, the transcribed interviews were transferred to ATLAS.ti (version 9.0.19.0), a computer assisted qualitative data analysis software (CAQDAS) for coding and analysis. For the initial coding process, complete coding was employed. This means that everything of interest was coded initially, before being discarded or included further in the analysis, and is suitable for an inductive approach (Braun & Clarke, 2013). Each code could contain more than one quote, and the coding phase yielded 502 unique codes. Exemplifying the coding of quotes (translated from Norwegian): “I was very good at pretending that I was doing fine, my parents knew hardly anything because I was so good at hiding it [Depression], and it was so much that they just didn’t know.” Was coded as “Hiding my difficulties from my family”.
Searching for themes
At this stage, codes were analysed and sorted into preliminary groups, gathering all potentially related information within the respective preliminary code groups. Codes appearing similar would be collated into the same categories, with categories continuously being revised depending on whether they correctly correlated with the codes. At this point codes were merged if multiple codes were too similar or split if their content was too different to make them fit with their preliminary category. 63 preliminary code groups were created for further review, of which one groups contained codes considered irrelevant for the study. Following the categorization of codes, thematic maps illustrating the relations between categories was created as a means of searching for and developing the first candidate themes.
Reviewing themes
Here, the candidate themes were refined to develop a first draft of the pathway to care, some themes being split or merged, and some preliminary themes such as “What medication I was on” were considered to not significantly contribute to the research question and were consequently discarded. The thematic maps were furtherly developed by assessment of whether they accurately related to the data set and were revised to become a singular map representing the data. To develop the thematic map, themes were examined for internal
homogeneity and external heterogeneity (Patton, 2014). This meant that themes were assessed based on whether the data within the themes were coherent and homogenous, and whether the themes were clear and distinct from one another, related to external heterogeneity. At this point, themes and how they related to one another was discussed with researchers in the TIPS/POP II group. Following discussion, review, and revision, of themes and the thematic map, three core themes and 9 sub themes were developed as part of the emerging
conceptualization of pathways to care. For example, the core-theme The Gatekeeping Confidant was developed from the preliminary themes “Knowing When and Where to Seek Help”, “Knowledge of Mental Illness”, “They Noticed, but Nobody Knew”, and “What’s Preventing Us from Knowing”. These candidate subthemes were later merged and developed as the subthemes presented in the report.
Defining and naming themes
At this point, themes were defined and named, and their position in the overall story of the analysis was developed, both through discussion and written analysis. All core themes were defined in a written analysis, in which their meaning was defined, and their position in the conceptualization was discussed. Here, the names of the themes were developed as well. The intention was to use name the themes in a way which would concisely and creatively illustrate their content as recommended by Braun & Clarke (2013). During this phase, the
core organizing category started to emerge from the relations, similarities, and differences between the different core themes, and the conceptualization included in this report (figure 2) was formed.
Producing the report
During the production of the research report, sub-themes were furtherly refined, through combining sub-themes with overlapping concepts, leaving 9 sub-themes for the report. At this point, member checking was performed to validate the results of the analysis in line with recommendations made in Braun & Clarke (2013). Additionally, one interview was conducted after the data analysis and analysed deductively using the coding framework developed from the first interview round.
Member Checking and The Second Round of Interviews
In line with the recommendations made in (Braun & Clarke, 2013), member checking was performed as a means of ensuring an adequate fit between the researcher perception of the data, and the lived experience of the informant. Member checking was performed between 22/4-2021 and 10/5-2021. Here, members were noticed about access to- and possibility to comment on a draft version of the result section over telephone. The draft was password encrypted, and only available within the aforementioned period. Respondents recognized the findings, and consequently no changes were made to the results section after member
checking.
The second interview round consisted of an additional interview of a male belonging to the UHR group which was analysed using the model developed from the first round. In this interview, no new categories emerged, nor was any contradicting information disclosed, indicating satisfactory levels of saturation.
According to the APA recommendations for qualitative research, an important aspect of qualitative research is for the researcher to reflect on their background approaching the project, and how prior experiences may influence the research (Langemar, 2008). The
intention of disclosing and reflecting on one’s background is to ensure transparency regarding what prior assumptions, interests and biases may have influenced the analysis, and
consequently allowing the reader to interpret the results from the perspective of the researcher and consider an alternative understanding of the data (Elliott et al., 1999).
Before initiating the research, I reflected on my expectations regarding the project. I had both work- and academic experience with psychosis, and upon reflection I identified three main assumptions. My first assumption was that young men would not seek help before transitioning to psychosis, and that if they did seek help, their primary concern would be conditions which caused them suffering such as anxiety or depression. Secondly, I assumed that the men would associate stigma with their condition, and that male gender roles would prevent them from seeking help. I also believed that many of the participants would not transition into a psychosis due to the special conditions of the Stavanger catchment area. TIPS has been present for many years, leading me to believe that people in the Stavanger catchment area would have more knowledge of psychosis, and that due to that be more likely to seek help earlier, consequently many participants would be seeking help for milder symptoms than in other areas.
One could also assume that due to my academic background, the development of the interview guide, conducting the interviews and the analysis in some way would be influenced by psychological models, and knowledge of both symptoms and general factors influencing psychological well-being, such as having a supporting network.
I identify as a male, and this may have influenced the research through both recognizing, and identifying with the stories of the participants, which on one hand is a
strength as it allows for more or less qualified guesses about the experience, consequently allowing me to ask more relevant questions, but on the other hand may be an obstacle in the way that I may assume that I understand their experiences, and not inquire further into their stories where it would be relevant.
Ethical Considerations
The project was included in the POP II application to the regional ethical committee of western Norway and was ethically approved as a part of POP II (REK reference: 84293). As the project included potentially vulnerable individuals, with many of them having suffered from quite severe symptoms as well adverse events in their lives. Some participants were under 18 years old, and some still received help from the mental health services. As a part of the POP II project, all participants received treatment as usual, and were safety monitored by mental health professionals involved in the project, ensuring that potential worsening of symptoms would be discovered and handled rapidly.
As the participants already were included in the POP II project, they had previously consented to participation in research interviews (appendix 2). This meant that we did not have to gather formal consent for participation, but all participants were free to decline or accept participation regardless of their consent in POP II. When contacting individuals under the age of 18, parents were contacted before contacting the potential informant.
All but two interviews were conducted over Norwegian Healthnet’s video-conference service “Join” which is approved for meetings with patients. The remaining two interviews were conducted over telephone based on the informants’ wishes. The interviews were
recorded on an external recorder before being transferred to an encrypted USB stick together with the other material from the project. Upon transcription, all names were removed from the text, and other irrelevant information such as where they had lived, and specifics of where
they had been admitted was removed as well. All names in the report are pseudonyms bearing no relation or resemblance to anyone participating in the study.
Results
The data analysis yielded three distinct core themes. Willingness to Disclose, The Gatekeeping Confidant and The Boiler, with the central organizing category being Openness (see figure 1). The pathway to care and what influences it was conceptualized as a timeline from the debut of symptoms to receiving help deemed appropriate and helpful by the
participant. Starting with the debut of symptoms, the participant could, or could not disclose their distress to others, with several factors influencing this willingness to disclose distress making for the first core theme, Willingness to Disclose Distress. Following disclosure, the person who the participant confided in acted as a gatekeeper for referral to the appropriate instance of help, represented in the second core theme The Gatekeeping Confidant. Should the confidant not be able to identify the participants’ distress as psychiatric symptoms, or should the participant be unwilling to disclose their suffering, they usually engaged in short-term coping strategies which led to an increase in symptomatic pressure until the point where the participant either would be motivated to disclose their distress, or it was made apparent to others, usually following an adverse event, where the suffering would be externalized in some way. This was represented in the core theme The Boiler. Following this, participants either disclosed their distress more accurately, or to someone who had a better ability to recognize psychiatric symptoms, leading to referral to appropriate help. The following results section is written using this chronology, with figure 2 illustrating the conceptualization.
1. Core Theme: Willingness to Disclose Distress
The first core theme revolved around the participants willingness to disclose their distress, and how it affected their help-seeking process. Willingness to disclose – and being open about their struggles was mentioned by all participants as helpful in itself, but also seemed to be a prerequisite for being referred to- and receiving appropriate help in the mental health services. Jonas exemplifies how disclosure and openness has helped him:
“Yeah, an issue I’ve always had with this was that no one told me or the other students about BUP [Youth mental health services] or psychology, and about all this important stuff, psychiatry, to talk and be open about everything that’s causing you pain… it can feel so good to get it out […] knowing this would have changed a lot of things for me I think.” (Jonas).
In contrast, disclosure as a prerequisite for receiving help was not explicitly stated by the informants, but was implicit in their stories, as exemplified with Kristians experience with what led to him receiving the help he needed in the mental health services:
“I only communicated using my phone you know, because I couldn’t speak, and so I wrote, I can’t take it anymore, it’s enough now, and I wrote it in a way that strongly indicated that I was suicidal, and that led to me being admitted to the psychiatric ward at the hospital […] [Before that] nobody knew what to do with me, they didn’t
understand.” (Kristian).
The willingness to disclose distress seemed to be influenced by several obstacles and facilitators which makes for the sub-themes in Willingness to Disclose: The Recognizing Symptoms of Mental Illness, Perceived Stigma, Modelling a Man, and The Influence of Symptoms
1.1 Sub theme: Recognizing Symptoms of Mental Illness
A prerequisite for the informants being able to disclose distress was the ability to recognize the symptoms responsible for causing suffering. This seemed to be related to either the ability to recognize that something was wrong or having a language for describing their suffering, as exemplified by Kristian who describes the months before he noticed he was struggling:
“During that period, my mom would ask me all the time “is something wrong, are you sad, are you depressed?”, and so I believe the course of illness may have begun a lot earlier, that my course of illness was longer than I perceived it to be… Things had to become a lot worse [to be able to notice it]... it took some time!” (Kristian).
Some participants related this inability to recognize their symptoms to a lack of knowledge about mental illness, and that if they had been able to identify that they were in
fact suffering from symptoms of mental illness, they assume that they would have known what they had to do about their distress – to disclose their struggles, and initiate help seeking at an earlier stage:
“I think they should have talked about it in school… just so that it’s clear what you should do if you feel like things are not going too well… just teach us about those kinds of thoughts and stuff… because during my time at school I don’t think we had… we didn’t talk about it, not even once.” (Alexander).
1.2 Sub theme: Perceived stigma
The sub theme “Perceived Stigma” refers to the informants’ beliefs about the stigma they associated with being a psychiatric patient, as well as what others would think of them for disclosing symptoms of mental illness.
Regarding perceptions about being a psychiatric patient, informants disclosed a variety of beliefs that they felt influenced their willingness to disclose their distress. The most typical beliefs about mental illness were that it was shameful to have symptoms of mental illness, negative beliefs about what others might think about them, and that a lack of societal openness about mental illness led to a perception that they were alone in their experience, exemplified by the following quote from Thomas.
“I thought about it a bit stereotypically, that it was shameful, to have that label, that to be a patient in that kind of system was a bit of a taboo… shame. Something I
absolutely did not want to identify with at that time.” (Thomas).
Here, Thomas describes his perceptions about seeking help for brief periods with psychotic symptoms, and how his perceptions about the mental health services prevented him from talking to anyone about his distress. Also interesting is that he at this point knew that he was suffering from symptoms of mental illness, and what could help him deal with the
symptoms, but actively made the choice not to disclose this to anyone due to the shame he associated with being in the mental health services.
Informants also had beliefs about what others would think about them if they knew that they were struggling that prevented them from seeking help. Kristian describes what he would have thought about a friend disclosing symptoms of psychosis at the time when he was struggling, illustrating his beliefs about what would happen if he decided to tell his friends about his struggles:
“If he had just said that he was depressed, I would have just tried to help him in the way I could at the time… but if he said psychosis, I would have started to avoid him, not because I didn’t want to be with him, but because he wouldn’t have been stable enough.” (Kristian).
Here, Kristian uses his conceptions of psychosis to hypothesise around how his friends would react if they were to learn that he was struggling. These conceptions typically stemmed from an idea about how society perceives and represents mental illness, which in turn affected the informants’ willingness to disclose distress. Alexander described how media and society presented mental illness as an obstacle to him seeking help in the mental health services.
“I felt in a way that, movies and stuff says that if you’re a psychiatric patient, you’re completely crazy, there’s like no end to it… but when I finally was admitted to the ward, I understood that I maybe wasn’t crazy after all, because there were people with anxiety and depression, and they’re quite normal really… so it wasn’t like full on straitjacket and stuff like in the movies, so I think it’s there you get the perceptions about what it’s like to be admitted to the psychiatric ward then.” (Alexander).
Alexander describes perceptions about mental illness stemming from media
and facilitated willingness to disclose distress, namely normalisation of psychiatric symptoms. Jonas describes how he initially was curious about his auditory hallucinations: “I was really curious, I understood that there was something there, but I didn’t really see it as a problem”, but how this changed upon his realization that he did not know anyone who experienced this:
“I didn’t really want to see it as a problem as it happened quite frequently, but that led to it becoming more of a “thing”, and I had never known or heard of anyone having these symptoms, and I became very embarrassed really.” (Jonas).
This realization and following embarrassment led to Jonas not wanting to disclose what he was experiencing, consequently leading to a longer duration of untreated illness. The feeling of loneliness can be contrasted with the experience that normalisation of symptoms led to the informants becoming more open and accepting towards their struggles, consequently becoming more willing to disclose their distress. All participants mentioned how
normalisation of their illness helped them to be more open, suggesting that the stigma associated with psychiatric illness was an important obstacle to seeking help:
“I felt like there was no one else in the world who felt like I did, which meant that something was wrong with me, but my mom motivated me to seek help when she told me that thousands of people had it like me, and that most people would experience a depression at some point in their lives.” (Alexander).
1.3 Sub theme: Modelling a Man
Many of the men describe perceptions about “manhood” as something influencing their willingness to disclose their struggles. Informants typically perceived being “a man” as being solid, independent, and not taking help from others. More variant perceptions of the male gender role were not showing emotions and, fear of what parents would think should
they disclose what they perceived to be weakness. Fredrik described his experience the following way:
“I feel like we as men have an image that we are rock-solid, and that we almost don’t have any emotions… and I think that becomes really unhelpful, because it creates a huge pressure [to live up to the expectations]… and I’ve seen among my friends, the ones who have sought help, that they’ve felt the same way with regards to that… that there is a pressure among boys to be solid all the time, we can’t talk about it like the girls do, but it should be equal for everyone.” (Fredrik).
Here, Fredrik describes how perceptions about manhood influences the willingness to disclose distress among men, that in some way, to seek help is to admit to not fitting into a stereotypical idea of manhood. Johan further develops on this experience, and contrasts his experience with how he perceives females deal with distress:
“Girls are so used to dealing with their emotions through talking about it, but men are so preoccupied with… “why do I have to talk about this, I feel so fucking weak”, and that makes it harder to talk about it with each other. […] It’s better to go through life with friendships where you have someone to talk to, where you can be open with your emotions and solve your problems.” (Johan).
The perception that girls are better at seeking help earlier was typical for the
informants, either through a belief that females are better at talking about their emotions, or through first-hand observation of a female friend or sibling, who had sought help earlier when experiencing issues like theirs.
All participants described in some way how the male gender role affected their willingness to seek help, directly or indirectly. The typical experience was that their ideal of masculinity prevented them from disclosing distress as it contradicted the idea of being strong
and solid. The men commonly described that they did not really talk about their personal issues with their friends in general, and that they considered it embarrassing to talk to their friends about what they were going through. However, a typical experience the men had was that upon opening up to male friends, their friends would model that behaviour, resulting in more supporting friendships and an environment where they more easily could disclose their issues, and receive help and support earlier:
“I could be really open with those who knew me well. They learned to see it
themselves, and were much quicker to ask about how I was doing… but with others I felt like I had to play the male role, but thinking about that, I think it’s completely wrong, It’s completely normal to do, but I feel like it’s wrong because you can’t be yourself… I’ve been lucky, I realized that quite early.” (Fredrik).
Alexander also reflected on his relationships with male friends and how disclosure has affected his friendships:
“It came as a shock to them when I was admitted to the ward, because they didn’t know anything before then, so we spent many nights in the ward together, talking. A lot of laughter and tears. […] after that, they’ve been much more open with me, and I’ve felt like I could be way more open with them… and our relationship has become much better.” (Alexander).
1.4 Sub theme: The Influence of Symptoms
The influence of symptoms was something that commonly affected the young men’s willingness to disclose distress –either through increasing their willingness to disclose distress or prevented them from seeking help. A typical experience for the informants who suffered from symptoms of paranoia was to isolate instead of seeking help, which in turn would make
them less likely to disclose their distress as isolation in these cases did alleviate the distress associated with being social when suffering from paranoia:
“I started to see shadow-people… spiders on the walls, I was extremely paranoid, it made it really difficult to have a social life, so I isolated myself a lot then, in my room… it was even difficult to communicate with my sister who I lived with at the time.” (Svein).
Here Svein describes how his psychotic symptoms made him isolate himself to deal with his distress. Another aspect of this response to his symptoms is how he perceives his hallucinations as reality, indicating a lack of insight into his symptoms. Not knowing what was happening seemed to influence the informants towards using isolation and avoidance as a means of alleviating distress. A lack of insight into, and not knowing what might help against mental illness would make it counterintuitive to seek out others for help, as illustrated by Martin’s experience with psychosis:
“It was a really fun experience initially, I have never been as happy as I was then ever in my life, I felt euphoric […] it was impossible for me to notice what was happening, until one day at work when my boss told me that I was being unconcentrated, just staring at the ground, and that I should go to the doctor… and it was not until then that I understood that something might have been wrong, and this was two months after it all started […] and when you’re also a bit paranoid, you don’t exactly trust the health services, I thought the psychologist was going to take away my psychosis against my will.” (Martin).
Martin describes a lack of insight into his symptoms which initially were perceived as something positive but became progressively more distressing as he started to have racing thoughts and paranoia later in his course of illness. In his case, the symptoms hindered his
ability and willingness to disclose distress, but in the cases where the informant was aware that something was going on, their willingness to disclose distress increased with the increased severity of their symptoms. Johan explains in the following quote how his symptoms increased his willingness to disclose distress, and seek help:
“I didn’t care that it costed a lot of money to talk to a psychologist, I couldn’t focus, I needed to stop whatever was causing me this pain… I just had to find a solution to make me feel better” (Johan).
2. Core theme: The Gatekeeping Confidant
The young men described either confiding their suffering to someone willingly, or unwillingly through an adverse event that made their suffering apparent to others. The core theme The Gatekeeping Confidant focuses on the confidants’ function as a gatekeeper to the mental health services. The confidant was assumed to be everyone the participant confided in up until being admitted into TIPS/POP II, meaning that the confidant could be anyone from friends, to family, teachers, general practitioners, and first-line mental health professionals. The confidants were perceived to be gatekeepers to the mental health services as they held the key to whether the participant would receive appropriate help or not. Some informants needed only to confide in a single person to be referred to the correct instance of help, whereas others sought help in many people of which were unable to recognize that the informants’ distress required professional help. The confidants had to correctly identify the participants’ distress as psychiatric symptoms and know where to refer them, and whether they could motivate the participant to seek help seemed to be commonly influenced by the strength of their
relationship. Therefore, the core theme “The Gatekeeping Confidant” consists of three subthemes: knowledge of psychiatric symptoms, where to refer them, and the relationship, with the following quote by Thomas illustrating the core theme:
“We had quite a good relationship, and so it was she who asked me whether I wanted to talk to someone professional, I didn’t really want to myself, but I did it for her […] I had told her about my nightmares and the voice I was hearing, and it was on the basis of that she told me she didn’t have the competence to deal with this, and that I should talk to someone professional, and that’s when I got in touch with TIPS.” (Thomas).
Within The Gatekeeping Confidant, three sub-themes who either facilitated or
hindered the pathway to care were identified: Knowledge of Psychiatric Symptoms, Where to Go, and The Relationship.
2.1 Sub theme: Knowledge of Psychiatric Symptoms
This subtheme pertains to the ability of the confidant to recognize psychiatric symptoms in the participant when they were disclosed or presented to them. Many
participants experienced that others noticed they were acting strangely, or noticed their coping strategies, but few identified this as symptoms of mental illness, as exemplified by the
following quote from Martin:
“I hung out with many of my close friends at the time, so I had many to talk to… They told me at the time, “Fuck, Martin, you’ve been so fucking weird lately”, because I said a lot of weird and stupid stuff which didn’t make sense to them, but it made sense to me, a lot of weird words coming out… they know I’m sort of a special person, so there wasn’t really anything unnatural about that, but they understood I was psychotic, retrospectively, after I got the diagnosis… I think it would have been
difficult for them to send me to the doctor’s, I don’t think they would have been able to see it” (Martin).
Here, Martin explains how his friends were unable to notice that he had an ongoing psychosis, but that they were able to see how it manifested in external behaviour. His
experience with his friends can be contrasted with how he was referred to the mental health services, when his boss who had knowledge of the symptoms of psychosis noticed his inability to concentrate and lack of affect, and correctly referred him to the doctor:
“He kept an eye on me for a while, because he knew what he should be looking for. He had seen it himself a long time ago, in another person who worked there, so he had some experience with seeing people having a psychosis or something” (Martin).
This situation illustrates how more knowledge of mental illness in the confidant tended to make the informants more likely to be referred to the mental health services. This was also made apparent by that upon seeking help in the first-line services, all but one participant was directly referred to TIPS/POP II. The only exception was Kristian, who was referred to a regional psychiatric clinic (DPS) where he was unable to disclose that he was starting to hallucinate, but upon communicating this he was quickly referred to TIPS.
2.2 Sub theme: Where to Go
Following a correct identification of symptoms of mental illness, the confidants acted as gatekeepers and influenced the pathway to care with their knowledge of where to refer the participant. The most common course of referral was through confiding in a trusted person, which then referred the participant to the general practitioner, who subsequently referred them to the mental health services.
“After I talked to my mom, she wanted me to talk to the general practitioner to hear what she thought, and if they could help me, and after talking to her [The general practitioner] a couple of times, I was referred to outpatient treatment at a regional psychiatric clinic (DPS)” (Alexander).
Another typical experience was that upon confiding in someone who had competence and knowledge of the mental health services, typically psychologists, psychiatrists and social workers, TIPS was the preferred instance of referral.
“I mean, she wasn’t a psychologist or nurse or anything, she was a social worker, but she could refer me to someone who knew about this […] She meant that I should talk to TIPS, I think that’s because she had found signs that what I experienced could be related to psychosis” (Thomas).
2.3 Sub theme: The Relationship
This subtheme refers to how the relationship between the confidant and the informant influenced their pathway to care. Participants usually would disclose to someone close, described as a best friend, a parent, or another person they had a close relationship. Upon the realization that the informant was suffering from symptoms of mental illness, the confidants were commonly described as keen to facilitate the help-seeking process of the informant. However, many informants described being unwilling to seek help, even after disclosing to someone. Thus, the strength of the relationship with the informant seemed to be an important facilitator in motivating the informant to seek help. The young men described a variety of ways a strong relationship motivated them to seek help:
“It was all about the relation, it was really apparent to me that she cared, and when she came up with a good explanation, she managed to convince me that it was because she cared about me that she wanted me to get help […] and it meant so much to me that she cared that much, so initially I talked to TIPS because she wanted it, but I later realized that I needed it” (Thomas).
Here, Thomas explains how the caring relationship with the social worker at his school convinced him to seek out help in the mental health services. He did not see a need for
professional help at this point himself, but through that relationship, he received appropriate help in time. Fredrik primarily confided in his father and best friend, and discloses a similar but slightly different motivation for why he complied to his confidants’ will that he should seek professional help:
“I have a fantastic family who loves me, and I have amazing friends who always were there, so my motivation was that I wanted to be independent, so I wouldn’t need their support and they could have a better life” (Fredrik).
Another aspect of this was a typical experience of the informant that the stronger their relationship with the confidant, the more likely the confidant would be to recognize signs of distress in the informant, both through facilitating openness and through the confidant being more able to notice changes in behaviour and affect. This would subsequently allow the confidant to accurately assess and refer the participant to an adequate instance of help, due to an increased likelihood of noticing symptoms that otherwise would not have been visible to others:
“My father saw it really quickly… We’re so similar, so he’s able to see the signs right away, so for him, the second it started happening he knew it… and then came my best friend, he knows everything about me so he saw it right away as well […] I spent much time with my father, and he has seen all my emotions, but this was new to him… and that he saw it, I think that was really important” (Fredrik).
3. Core theme: The Boiler
Informants could disclose their distress, and be referred to the appropriate instance of help, but they could also be denied access to help by confidants who failed to identify their distress, and even decide not to disclose their distress at all. These two scenarios lead us into the third core-theme: The Boiler. The Boiler refers to the increasing symptomatic pressure
which was described as instigating a variety of adverse outcomes. The general perception was that with increased suffering, willingness to seek help would increase and would also increase the likelihood of someone identifying their suffering as psychiatric symptoms. The Boiler consists of two sub-themes: It Works in the Short-Term and Letting Off Steam. 3.1 Sub theme: It Works in the Short-Term
Short-term coping refers to which strategies informants implemented to deal with their symptoms, but which over time were not enough to deal with their suffering. The most
common way informants dealt with their issues was through isolation, regardless of which symptoms they described as most distressing. Participants described a variety of reasons for isolation, typically in response to devaluating thoughts and social anxiety, with participants who suffered from paranoia and racing thoughts avoided social interaction to reduce input of stimuli, and in some cases to alleviate paranoid anxiety.
“It was really difficult, I isolated myself in my room to get some peace […] I had to be alone, because I felt like I was about to snap, just smash everything in the house, because I felt like people were thinking about me.” (Svein).
Jonas further develops on this:
“The voices could be quite loud, […] and sometimes this really manic laughter when I was talking to people […] It was easier to be alone than social because of the
symptoms [Auditory hallucinations], so I started quite early to build a tolerance for being by myself.” (Jonas).
Jonas’ quote also illustrates another common way to deal with symptoms and distress, namely, to endure it, hoping that it would eventually pass. The most common reason for attempting to endure symptoms was to avoid the stigma of having “mental problems”.
Alexander described it as wearing a mask, and how he wore that mask so that others could be with him:
“It’s like, when you don’t want to show it, you put on a mask… to pretend that
nothings’ going on, but on the inside, you’re exploding, but I just tried to make people not notice, hoping it would pass.” (Alexander).
Regardless of what coping strategies the participants employed, the common issue was that it only had an effect in the short term, leading to progressively higher levels of distress:
“[Wearing the mask] you didn’t feel like you were yourself, and eventually I became more and more isolated, doing less and less things, that didn’t make things any better really.” (Alexander).
3.2 Sub theme: Letting Off Steam
Participants commonly described that following increasing symptomology; levels of suffering increased until it became unbearable, and they had to “Let off steam”, which was identified as the second sub-theme within “The Boiler”. Participants described a variety of ways they responded to unbearable levels of symptoms, commonly having thoughts of committing- or attempting suicide, but also more variant responses such as becoming violent towards others and experiencing extreme mood-swings.
“I reached the point where I was ready, I had written a letter and everything, and I was ready to just end it, but luckily I survived, and I think it just made me realize that I could get help, that BUP was a place where you could live and get help, and so I chose that, I didn’t want to go through with it [Suicide]” (Jonas).
What seemed to be a common denominator regarding responses to unbearable levels of symptoms was that it either made the participant realize that he had to seek external help
for his struggles, or that others became aware of his need for help. Jonas’ experience
demonstrates how his suicide attempt made him realize how much he was suffering, but also motivated him to seek professional help. The following quote from Thomas further
exemplifies what could make the informant come to the realization they were struggling, and develops on how externalization of symptoms made others aware of their suffering:
“The decisive episode was a situation where I… well… I assaulted a buddy of mine, with no reason for it really… I remember it like if I was observing myself in third person, I felt like wasn’t there, I was just on top of him striking him repeatedly without feeling I had any control. That’s when I felt like… shit… the feeling of not having control over one’s body, something else taking over my hand, and especially since it was unprovoked […] so yeah, people started to become really afraid of me”
(Thomas).
Thomas had earlier had contact with a social worker at his school due to issues with aggression, and thus his experience illustrates both sides of this subtheme. His suffering manifested in external behaviour led to individuals in his environment noticing that something was going on, some fearing him and the school enforcing measures to help him deal with his anger. The experience he describes in the previous quote was what made him realize that he had to seek help, thus leading him to disclose his distress to the social worker who Thomas describes having a uniquely trusting relationship with.
Central Organizing Category: Openness
Throughout all the interviews, openness- or lack thereof seemed to be the main thing influencing the young men’s pathways to care. All participants described in some way how disclosure and talking about their issues helped alleviate their symptoms. Talking to someone professional, being able to be honest, and normalisation of symptoms was what the
