Exploring personal accounts of the facilitators and barriers to seeking help for first-episode psychosis (FEP): a meta-ethnography

Figures & data

Table 1. Search terms.

Key words	Search terms derived from key words
Psychosis	First episode psychosis OR FEP OR duration of untreated psychosis OR DUP AND psychotic* OR voice hear* OR hearing voice*
Patients	First person* OR first hand account* OR patient* OR lived experience* OR consumer* OR client* OR account*
Qualitative	Qualitative OR interview* OR experience* OR perspective* OR encounter*
Help-seeking	Disclosure* OR facilitator* AND help*
Barriers	Delay* OR DUP AND barrier* OR obstacle*

Figure 1. PRISMA flowchart illustrating the systematic screening process.

Table 2. Inclusion and exclusion criteria.

Inclusion	Exclusion	Rationale
English	Any other language (including translated articles)	Using other languages involves translations and/or using a professional translator. This adds a third interpretive act to the analysis for only the select non-English articles. This not only increases the likelihood of meanings and contexts in the source language being lost in the process of translation (Van Nes et al., 2010), but may impact the trustworthiness of the richness of data.
Adult population	Child Older Adults	The average age of onset for First Episode Psychosis (FEP) commonly occurs between the ages of 15–30; studies were included if they used an age range lower than 18 as long as the study’s population interest was not exclusively young people.
Qualitative studies	Quantitative, literature reviews, protocols and descriptive-only qualitative analysis (e.g. word-frequency content analysis), “grey literature” (e.g. policy documents)	Studies had to have a qualitative exploratory investigation on personal accounts of FEP and help-seeking. Mixed-methods were considered if they had the relevant research aims and a qualitative interpretive-data analysis (e.g. thematic analysis) were used.
First-person accounts of FEP	Carers-only Family-only Healthcare professionals-only	If studies had carer and supportive network accounts, but also first-person accounts they were also included so long as perspectives could be distinguished between participants.
Participants who received a diagnosis of a Psychotic disorder	At-risk psychosis	The experiences and processes of people identified “at risk” was deemed too broad to allow for both interpretability and synthesis alongside participants who developed psychosis.
Studies with research question (s) aimed at FEP and help-seeking	Studies that did not have at least 1 aim qualitatively exploring FEP and help-seeking
Published articles	Postgraduate papers Unpublished studies

Table 3. Study characteristics.

Author and year	Country	Epistemological Position	Sample Size	Method & Analytic Tool
Spikol and Murphy (2019)	Northern Ireland	Not stated	n = 139	Qualitative: Interpretive Phenomenological Analysis (IPA)
Singh et al. (2013)	UK	Not stated	n = 25 (qualitative participant sample)	Mixed methods: Braun and Clarke’s (2006) Thematic Analysis
Jansen et al. (2015)	Denmark	Social constructivism	n = 10	Qualitative: Braun and Clarke’s (2006) Thematic Analysis
Bay et al. (2016)	Norway	Not stated	n = 8	Qualitative: Systematic Meaning Condensation Procedure
Ferrara et al. (2021)	Canada	Not stated	n = 25	Qualitative: Braun and Clarke’s (2006) Thematic Analysis
Hardy et al. (2020)	USA	Not stated	n = 193	Qualitative: Braun and Clarke’s (2006) Thematic Analysis
Tanskanen et al. (2011)	UK	Not stated	n = 30	Qualitative: Braun and Clarke’s (2006) Thematic Analysis
Jansen et al. (2014)	Denmark	Not stated	n = 11	Qualitative: Braun and Clarke’s (2006) Thematic Analysis
Kamens et al. (2018)	USA	Not stated	n = 10	Mixed methods:Qualitative analysis utilized a modified version of Giorgi (2009) and Martin et al.’s (2015) systematic phenomenological procedures
Cabassa et al. (2018)	USA	Not stated	n = 30	Qualitative: Grounded Theory Case Study methodology
Nordgaard et al. (2020)	Denmark	Not stated	n = 9	Qualitative: Braun and Clarke’s (2006) Thematic Analysis
Macnaughton et al. (2015)	Canada	Constructivist	n = 12	Qualitative: Grounded Theory Narrative analysis
Bogen-Johnston et al. (2019)	UK	Not stated	n = 20	Qualitative: Braun and Clarke’s (2006) Thematic Analysis
Melton et al. (2020)	USA	Social constructivist	n = 15	Qualitative: Grounded Theory
Judge et al. (2008)	USA	Not stated	n = 15	Qualitative: Grounded Theory Content Analysis
Van Beek et al. (2022)	Suriname	Not stated	n = 49	Thematic Analysis
Chilale et al. (2017)	Northern Malawi	Not stated	n = 8	Thematic Analysis

Table 4. Participant characteristics.

Author and year	Participants age	Gender	Ethnicity
Spikol and Murphy (2019)	18–29	Not listed	Not listed
Singh et al. (2013)	Not listed (only demographic data listed for quantitative analyses)	Not listed (only demographic data listed for quantitative analyses)	5 black patients 5 black carers 5 Asian patients 4 Asian carers 4 white patients 4 white carers
Jansen et al. (2015)	18–27, median age = 21	5 males 5 females	Ethnic Danish
Bay et al. (2016)	17–44	4 males 4 females	Not listed
Ferrara et al. (2021)	Mean age = 26 years old	13 males 12 females	3 male Africans 3 male Caribbean 7 male Europeans 2 female Africans 1 female Caribbean 9 female Europeans
Hardy et al. (2020)	Not listed	Not listed	Not listed
Tanskanen et al. (2011)	Mean age = 23.5	15 males 6 females	3 White-British 4 White “other” 3 Black Africans 5 Black Caribbean 4 Asian Bangladeshi 2 Mixed Race
Jansen et al. (2014)	15–24, median age = 20	6 males 5 females	Ethnic Danish
Kamens et al. (2018)	Mean age = 22.5	6 males 4 females	2 African American 3 Mixed-Race 4 White 1 not listed
Cabassa et al. (2018)	Mean age = 23.7	11 males 9 females	11 Hispanic 5 African American 10 non-Hispanic White 2 Asian
Nordgaard et al. (2020)	Mean age = 27.3	4 males 5 females	Not listed
Macnaughton et al. (2015)	20–32, median age = 26	6 males 6 females	4 Anglo-Europeans 4 East Asian 3 non-Anglophone European 1 South Asian
Bogen-Johnston et al. (2019)	Mean age = 25	12 males 8 females	Not listed
Melton et al. (2020)	Mean age = 24	Not listed	Not listed
Judge et al. (2008)	Mean age = 24.4	8 males 7 females	12 Caucasian 2 African American 1 Asian
Van Beek et al. (2022)	Median age = 39	25 males 24 females	12 Indian 6 Creole 2 Mixed 7 Javanese 8 Multiple ethnicities 1 Unknown
Chilale et al. (2017)	Not listed	4 males	Not listed
		4 females

Figure 2. Quality appraisal.

Table 5. Meta-ethnography themes: the facilitators and barriers to help-seeking for people with FEP.

Themes	Sub-themes
Initial certainty in interpreting experiences	Contextualizing experiences Normalizing experiences
Growing uncertainty leading to different explanations	Growing uncertainty Developing alternative frameworks of understanding
The role of significant others in help-seeking
The role of services in help-seeking (or not)
The tipping point

Van Nes, F., Abma, T., Jonsson, H., & Deeg, D. (2010). Language differences in qualitative research: Is meaning lost in translation? European Journal of Ageing, 7(4), 313–316. https://doi.org/10.1007/s10433-010-0168-y

 PubMed Web of Science ®Google Scholar

Spikol, A., & Murphy, J. (2019). ‘Something wasn’t quite right’: A novel phenomenological analysis of internet discussion posts detailing initial awareness of psychosis. Clinical Schizophrenia & Related Psychoses, (aop). https://doi.org/10.3371/csrp.spjm.032819

 Google Scholar

Singh, S., Islam, Z., Brown, L., Gajwani, R., Jasani, R., Rabiee, F., & Parsons, H. (2013). Ethnicity, detention and early intervention: Reducing inequalities and improving outcomes for black and minority ethnic patients: The ENRICH programme, a mixed-methods study. Programme Grants for Applied Research, 1(3), 1–168. https://doi.org/10.3310/pgfar01030

 Google Scholar

Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101. https://doi.org/10.1191/1478088706qp063oa

 Google Scholar

Jansen, J. E., Pedersen, M. B., Hastrup, L. H., Haahr, U. H., & Simonsen, E. (2015). Important first encounter: Service user experience of pathways to care and early detection in first-episode psychosis. Early Intervention in Psychiatry, 12(2), 169–176. https://doi.org/10.1111/eip.12294

 Google Scholar

Bay, N., Bjørnestad, J., Johannessen, J. O., Larsen, T. K., & Joa, I. (2016). Obstacles to care in first-episode psychosis patients with a long duration of untreated psychosis. Early Intervention in Psychiatry, 10(1), 71–76. https://doi.org/10.1111/eip.12152

 PubMed Web of Science ®Google Scholar

Ferrara, M., Guloksuz, S., Mathis, W. S., Li, F., Lin, I., Syed, S., Gallagher, K., Shah, J., Kline, E., Tek, C., Keshavan, M., & Srihari, V. H. (2021). First help-seeking attempt before and after psychosis onset: Measures of delay and aversive pathways to care. Social Psychiatry and Psychiatric Epidemiology, 56(8), 1359–1369. https://doi.org/10.1007/s00127-021-02090-0

 Web of Science ®Google Scholar

Hardy, K. V., Dickens, C. E., Roach, E. L., Harrison, V., Desai, A., Flynn, L., Noordsy, D. L., Dauberman, J., & Adelsheim, S. (2020). Lived experience perspectives on reducing the duration of untreated psychosis: The impact of stigma on accessing treatment. Psychosis, 12(3), 269–280. https://doi.org/10.1080/17522439.2020.1754890

 Google Scholar

Tanskanen, S., Morant, N., Hinton, M., Lloyd-Evans, B., Crosby, M., Killaspy, H., Raine, R., Pilling, S., & Johnson, S. (2011). Service user and carer experiences of seeking help for a first episode of psychosis: A UK qualitative study. BMC Psychiatry, 11(1). https://doi.org/10.1186/1471-244x-11-157

 Google Scholar

Jansen, J. E., Wøldike, P. M., Haahr, U. H., & Simonsen, E. (2014). Service user perspectives on the experience of illness and pathway to care in first-episode psychosis: A qualitative study within the TOP project. Psychiatric Quarterly, 86(1), 83–94. https://doi.org/10.1007/s11126-014-9332-4

 Web of Science ®Google Scholar

Kamens, S. R., Davidson, L., Hyun, E., Jones, N., Morawski, J. G., Kurtz, M. M., Pollard, J., Ian van Schalkwyk, G., & Srihari, V. (2018). The duration of untreated psychosis: A phenomenological study. Psychosis, 10(4), 307–318. https://doi.org/10.1080/17522439.2018.1524924

 PubMed Web of Science ®Google Scholar

Giorgi, A. (2009). The descriptive phenomenological method in psychology: A modified Husserlian approach. Duquesne.

 Google Scholar

Martin, J., Sugarman, J., & Slaney, K. L. (2015). Phenomenology: Methods, historical development, and applications in psychology. In The Wiley handbook of theoretical and philosophical psychology: Methods, approaches, and new directions for social sciences. John Wiley & Sons.

 Google Scholar

Cabassa, L. J., Piscitelli, S., Haselden, M., Lee, R. J., Essock, S. M., & Dixon, L. B. (2018). Understanding pathways to care of individuals entering a specialized early intervention service for first-episode psychosis. Psychiatric Services, 69(6), 648–656. https://doi.org/10.1176/appi.ps.201700018

 PubMed Web of Science ®Google Scholar

Nordgaard, J., Nilsson, L. S., Gulstad, K., & Buch-Pedersen, M. (2020). The paradox of help-seeking behaviour in psychosis. Psychiatric Quarterly, 92(2), 549–559. https://doi.org/10.1007/s11126-020-09833-3

 Web of Science ®Google Scholar

Macnaughton, E., Sheps, S., Frankish, J., & Irwin, D. (2015). Understanding the development of narrative insight in early psychosis: A qualitative approach. Psychosis, 7(4), 291–301. https://doi.org/10.1080/17522439.2014.980306

 Web of Science ®Google Scholar

Bogen-Johnston, L., De Visser, R., Strauss, C., Berry, K., & Hayward, M. (2019). “That little doorway where I could suddenly start shouting out”: Barriers and enablers to the disclosure of distressing voices. Journal of Health Psychology, 24(10), 1307–1317. https://doi.org/10.1177/1359105317745965

 Web of Science ®Google Scholar

Melton, R., Blajeski, S., & Glasser, D. (2020). Understanding individual and family experiences associated with DUP: Lessons from the early assessment and support alliance (EASA) program in Oregon, USA. Community Mental Health Journal, 56(6), 1121–1127. https://doi.org/10.1007/s10597-020-00599-3

 Web of Science ®Google Scholar

Judge, A. M., Estroff, S. E., Perkins, D. O., & Penn, D. L. (2008). Recognizing and responding to early psychosis: A qualitative analysis of individual narratives. Psychiatric Services, 59(1), 96–99. https://doi.org/10.1176/ps.2008.59.1.96

 PubMed Web of Science ®Google Scholar

Van Beek, A., De Zeeuw, J., De Leeuw, M., Poplawska, M., Kerkvliet, L., Dwarkasing, R., Nanda, R., & Veling, W. (2022). Duration of untreated psychosis and pathways to care in Suriname: A qualitative study among patients, relatives and general practitioners. British Medical Journal Open, 12(2), e050731. https://doi.org/10.1136/bmjopen-2021-050731

 Web of Science ®Google Scholar

Chilale, H. K., Silungwe, N. D., Gondwe, S., & Masulani-Mwale, C. (2017). Clients and carers perception of mental illness and factors that influence help-seeking: Where they go first and why. International Journal of Social Psychiatry, 63(5), 418–425. https://doi.org/10.1177/0020764017709848

 Web of Science ®Google Scholar