In this study, we aim to increase our understanding of the self-reported sources of distress among people who have experienced first-episode psychosis. Following a systematic literature search, 33 relevant studies containing first-person accounts of first-episode psychosis were identified, which were synthesized using thematic analysis. Two interrelated superordinate themes were identified: intrapersonal distress and interpersonal distress. Participants reported multiple, diverse, and multifaceted sources of distress across both themes. These were substantially different from those routinely recognized and targeted in clinical practice. This review suggests that practitioners who maintain a stance of genuine curiosity about the potential sources of distress for this population will be perceived as more helpful. The findings also highlight the importance of being service user–led when planning and delivering mental health care. Additional clinical and research implications are discussed.
AjayiS.BillsboroughJ.BowyerT.BrownP.HicksA.LarsenJ.SmithR. (2009). Getting back into the world: Reflections on lived experience of recovery (Rethink Recovery Series). London, UK: Rethink. Retrieved from http://www.workingforrecovery.co.uk/Getting_back_into_the_world.pdf
2.
AndersonK. K.FuhrerR.MallaA. K. (2013). “There are too many steps before you get to where you need to be”: Help-seeking by patients with first-episode psychosis. Journal of Mental Health, 22, 384–395. doi:10.3109/09638237.2012.705922
3.
AndradeM. C. R.SladeM.BandeiraM.Evans-LackoS.KomaroffJ.MartinD.. . . AndreoliS. B. (2016). Subjective distress in a representative sample of outpatients with psychotic disorders. Journal of Affective Disorders, 189, 220–223. doi:10.1016/j.jad.2015.08.075
4.
AshcroftK.BarrowF.LeeR.MacKinnonK. (2012). Mindfulness groups for early psychosis. Psychology and Psychotherapy: Theory, Research and Practice, 85, 327–334. doi:10.1111/j.2044-8341.2011.02031.x
5.
AshworthM.ShepherdM.ChristeyJ.MatthewsV.WrightK.ParmentierH.GodfreyE. (2004). A client-generated psychometric instrument: The development of “PSYCHLOPS.”Counselling and Psychotherapy Research, 4(2), 27–31. doi:10.1080/14733140412331383913
6.
AsmalL.MallS.EmsleyR.ChilizaB.SwartzL. (2014). Towards a treatment model for family therapy for schizophrenia in an urban African setting: Results from a qualitative study. International Journal of Social Psychiatry, 60, 315–320. doi:10.1177/0020764013488569
7.
BaileyS.GeradaC.LesterH.ShiersD. (2012). The cardiovascular health of young people with severe mental illness: Addressing an epidemic within an epidemic. The Psychiatrist, 36, 375–378. doi:10.1192/pb.bp.112.039727
8.
Barnett-PageE.ThomasJ. (2009). Methods for the synthesis of qualitative research: A critical review. BMC Medical Research Methodology, 9, Article 59. doi:10.1186/1471-2288-9-59
9.
BennionA. E.ShawR. L.GibsonJ. M. (2012). What do we know about the experience of age related macular degeneration? A systematic review and meta-synthesis of qualitative research. Social Science & Medicine, 75, 976–985. doi:10.1016/j.socscimed.2012.04.023
10.
BerryK.FordS.Jellicoe-JonesL.HaddockG. (2013). PTSD symptoms associated with the experiences of psychosis and hospitalisation: A review of the literature. Clinical Psychology Review, 33, 526–538. doi:10.1016/j.cpr.2013.01.011
11.
BerryK.FordS.Jellicoe-JonesL.HaddockG. (2015). Trauma in relation to psychosis and hospital experiences: The role of past trauma and attachment. Psychology and Psychotherapy: Theory, Research and Practice, 88, 227–239. doi:10.1111/papt.12035
12.
BirdV.PremkumarP.KendallT.WhittingtonC.MitchellJ.KuipersE. (2010). Early intervention services, cognitive-behavioural therapy and family intervention in early psychosis: Systematic review. The British Journal of Psychiatry, 197, 350–356. doi:10.1192/bjp.bp.109.074526
13.
BishopF. L. (2015). Using mixed methods research designs in health psychology: An illustrated discussion from a pragmatist perspective. British Journal of Health Psychology, 20(1), 5–20. doi:10.1111/bjhp.12122
14.
BragaR. J.ReynoldsG. P.SirisS. G. (2013). Anxiety comorbidity in schizophrenia. Psychiatry Research, 210(1), 1–7. doi:10.1016/j.psychres.2013.07.030
15.
BraunV.ClarkeV. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3, 77–101. doi:10.1191/1478088706qp063oa
16.
ByrneR.DaviesL.MorrisonA. P. (2010). Priorities and preferences for the outcomes of treatment of psychosis: A service user perspective. Psychosis, 2, 210–217. doi:10.1080/17522430903456913
17.
CadarioE.StantonJ.NichollsP.CrengleS.WouldesT.GillardM.MerryS. N. (2012). A qualitative investigation of first-episode psychosis in adolescents. Clinical Child Psychology and Psychiatry, 17, 81–102. doi:10.1177/1359104510391860
18.
CairnsV. A.ReidG. S.MurrayC.WeatherheadS. J. (2015). Experience of psychosocial formulation within a biopsychosocial model of care for first-episode psychosis. International Journal of Psychosocial Rehabilitation, 19, 47–62. Retrieved from http://www.psychosocial.com/index.htm
19.
CampbellM. L. C.MorrisonA. P. (2007). The subjective experience of paranoia: Comparing the experiences of patients with psychosis and individuals with no psychiatric history. Clinical Psychology & Psychotherapy, 14, 63–77. doi:10.1002/cpp.510
CareyT. A.SprattM. B. (2009). When is enough enough? Structuring the organization of treatment to maximize patient choice and control. The Cognitive Behaviour Therapist, 2, 211–226. doi:10.1017/S1754470X09000208
22.
CareyT. A.TaiS. J.StilesW. B. (2013). Effective and efficient: Using patient-led appointment scheduling in routine mental health practice in remote Australia. Professional Psychology, 44, 405–414. doi:10.1037/a0035038
23.
ChadwickP. (2006). Person-based cognitive therapy for distressing psychosis. Chichester, UK: John Wiley. doi:10.1002/9780470713075
24.
ChildsH. E.McCarthy-JonesS.RowseG.TurpinG. (2011). The journey through cannabis use: A qualitative study of the experiences of young adults with psychosis. The Journal of Nervous and Mental Disease, 199, 703–708. doi:10.1097/NMD.0b013e318229d6bd
25.
ConnellM.SchweitzerR.KingR. (2014). Recovery from first-episode psychosis and recovering self: A qualitative study. Psychiatric Rehabilitation Journal, 38, 359–364. doi:10.1037/prj0000077
26.
ConnellM.SchweitzerR.KingR. (2015). Recovery from first-episode psychosis: A dialogical perspective. Bulletin of the Menninger Clinic, 79, 70–90. doi:10.1521/bumc.2015.79.1.70
27.
ConnorC.GreenfieldS.LesterH.ChannaS.PalmerC.BarkerC.. . . BirchwoodM. (2016). Seeking help for first-episode psychosis: A family narrative. Early Intervention in Psychiatry, 10, 334–345. doi:10.1111/eip.12177
28.
CookeA.SmithD.BoothA. (2012). Beyond PICO: The SPIDER tool for qualitative evidence synthesis. Qualitative Health Research, 22, 1435–1443. doi:10.1177/1049732312452938
29.
CorriganP. (2004). How stigma interferes with mental health care. American Psychologist, 59, 614–625. doi:10.1037/0003-066X.59.7.614
Díaz-CanejaC. M.Pina-CamachoL.Rodríguez-QuirogaA.FraguasD.ParelladaM.ArangoC. (2015). Predictors of outcome in early-onset psychosis: A systematic review. NPJ Schizophrenia, 1, 1-10. doi:10.1038/npjschz.2014.5
32.
DukeP. J.PantelisC.McPhillipsM.BarnesT. R. E. (2001). Comorbid non-alcohol substance misuse among people with schizophrenia. The British Journal of Psychiatry, 179, 509–513. doi:10.1192/bjp.179.6.509
33.
EsterbergM. L.ComptonM. T. (2005). Smoking behavior in persons with a schizophrenia-spectrum disorder: A qualitative investigation of the transtheoretical model. Social Science & Medicine, 61, 293–303. doi:10.1016/j.socscimed.2004.11.057
34.
FentonK.LarkinM.BodenZ. V. R.ThompsonJ.HickmanG.NewtonE. (2014). The experiential impact of hospitalisation in early psychosis: Service-user accounts of inpatient environments. Health & Place, 30, 234–241. doi:10.1016/j.healthplace.2014.09.013
35.
FerrariM.FloraN.AndersonK. K.TuckA.ArchieS.KiddS.McKenzieK. (2015). The African, Caribbean and European (ACE) Pathways to Care study: A qualitative exploration of similarities and differences between African-origin, Caribbean-origin and European-origin groups in pathways to care for psychosis. BMJ Open, 5, 1-12. doi:10.1136/bmjopen-2014-006562
36.
FirthJ.CarneyR.ElliottR.FrenchP.ParkerS.McintyreR.. . . YungA. R. (2016). Exercise as an intervention for first-episode psychosis: A feasibility study. Early Intervention in Psychiatry, 12, 307–315. doi:10.1111/eip.12329
37.
FirthJ.CarneyR.JeromeL.ElliottR.FrenchP.YungA. R. (2016). The effects and determinants of exercise participation in first-episode psychosis: A qualitative study. BMC Psychiatry, 16, Article 36. doi:10.1186/s12888-016-0751-7
FletcherA. J. (2017). Applying critical realism in qualitative research: Methodology meets method. International Journal of Social Research Methodology, 20, 181–194. doi:10.1080/13645579.2016.1144401
40.
GaretyP. A.KuipersE.FowlerD.FreemanD.BebbingtonP. E. (2001). A cognitive model of the positive symptoms of psychosis. Psychological Medicine, 31, 189–195. doi:10.1017/S0033291701003312
41.
GreenwoodK. E.SweeneyA.WilliamsS.GaretyP.KuipersE.ScottJ.PetersE. (2010). CHoice of Outcome In Cbt for psychosEs (CHOICE): The development of a new service user–led outcome measure of CBT for psychosis. Schizophrenia Bulletin, 36, 126–135. doi:10.1093/schbul/sbp117
42.
HaddockG.SpauldingW. (2013). Family interventions for psychosis. Progress in Neurology and Psychiatry, 17(2), 18–19. doi:10.1002/pnp.273
43.
HansenH.StigeS. H.DavidsonL.MoltuC.VesethM. (2018). How do people experience early intervention services for psychosis? A meta-synthesis. Qualitative Health Research, 28, 259–272. doi:10.1177/1049732317735080
44.
HanssenM.BakM.BijlR.VolleberghW.van OsJ. (2005). The incidence and outcome of subclinical psychotic experiences in the general population. British Journal of Clinical Psychology, 44, 181–191. doi:10.1348/014466505X29611
45.
HarrisK.CollinsonC.Das NairR. (2012). Service-users’ experiences of an early intervention in psychosis service: An interpretative phenomenological analysis. Psychology and Psychotherapy: Theory, Research and Practice, 85, 456–469. doi:10.1111/j.2044-8341.2011.02043.x
46.
HarveyA. H.WatkinsE.MansellW.ShafranR. (2004). Cognitive behavioural processes across psychological disorders: A transdiagnostic perspective to research and treatment. Oxford, UK: Oxford University Press.
47.
HonA. (2012). Factors influencing the adherence of antipsychotic medication (Aripiprazole) in first-episode psychosis: Findings from a grounded theory study. Journal of Psychiatric and Mental Health Nursing, 19, 354–361. doi:10.1111/j.1365-2850.2012.01898.x
48.
JansenJ. E.PedersenM. B.TrauelsenA. M.NielsenH. G. L.HaahrU. H.SimonsenE. (2016). The experience of childhood trauma and its influence on the course of illness in first-episode psychosis: A qualitative study. The Journal of Nervous and Mental Disease, 204, 210–216. doi:10.1097/NMD.0000000000000449
49.
JansenJ. E.WøldikeP. M.HaahrU. H.SimonsenE. (2015). 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, 83–94. doi:10.1007/s11126-014-9332-4
50.
JudgeA. M.EstroffS. E.PerkinsD. O.PennD. L. (2008). Recognizing and responding to early psychosis: A qualitative analysis of individual narratives. Psychiatric Services, 59, 96–99. doi:10.1176/appi.ps.59.1.96
51.
KilcommonsA. M.MorrisonA. P. (2005). Relationships between trauma and psychosis: An exploration of cognitive and dissociative factors. Acta Psychiatrica Scandinavica, 112, 351–359. doi:10.1111/j.1600-0447.2005.00623.x
52.
KorhonenA.Hakulinen-ViitanenT.JylhaV.HolopainenA. (2013). Meta-synthesis and evidence-based health care—A method for systematic review. Scandinavian Journal of Caring Sciences, 27, 1027–1034. doi:10.1111/scs.12003
53.
LandisJ. R.KochG. G. (1977). The measurement of observer agreement for categorical data. Biometrics, 33, 159–174. doi:10.2307/2529310
54.
LawH.MorrisonA. P. (2014). Recovery in psychosis: A Delphi study with experts by experience. Schizophrenia Bulletin, 40, 1347–1355. doi:10.1093/schbul/sbu047
55.
LeamyM.BirdV.Le BoutillierC.WilliamsJ.SladeM. (2011). Conceptual framework for personal recovery in mental health: Systematic review and narrative synthesis. The British Journal of Psychiatry, 199, 445–452. doi:10.1192/bjp.bp.110.083733
56.
LockettS. H.HattonJ.TurnerR.StubbinsC.HodgekinsJ.FowlerD. (2012). Using a semi-structured interview to explore imagery experienced during social anxiety for clients with a diagnosis of psychosis: An exploratory study conducted within an early intervention for psychosis service. Behavioural and Cognitive Psychotherapy, 40, 55–68. doi:10.1017/S1352465811000439
57.
MalpassA.ShawA.SharpD.WalterF.FederG.RiddM.KesslerD. (2009). “Medication career” or “Moral career”? The two sides of managing antidepressants: A meta-ethnography of patients’ experience of antidepressants. Social Science & Medicine, 68, 154–168. doi:10.1016/j.socscimed.2008.09.068
58.
MansellW.HarveyA.WatkinsE. R.ShafranR. (2008). Cognitive behavioral processes across psychological disorders: A review of the utility and validity of the transdiagnostic approach. International Journal of Cognitive Therapy, 1, 181–191. doi:10.1680/ijct.2008.1.3.181
59.
MarshallM.RathboneJ. (2011). Early intervention for psychosis. Schizophrenia Bulletin, 37, 1111–1114. doi:10.1093/schbul/sbr110
60.
MilliganD.McCarthy-JonesS.WinthropA.DudleyR. (2013). Time changes everything? A qualitative investigation of the experience of auditory verbal hallucinations over time. Psychosis, 5, 107–118. doi:10.1080/17522439.2012.667438
61.
MoherD.LiberatiA.TetzlaffJ.AltmanD. G.AltmanD.AntesG.TugwellP. (2009). Preferred reporting items for systematic reviews and meta-analyses: The PRISMA statement. PLoS Medicine, 6, 873–880. doi:10.1371/journal.pmed.1000097
62.
MorrisonA. P. (2001). The interpretation of intrusions in psychosis: An integrative cognitive approach to hallucinations and delusions. Behavioural and Cognitive Psychotherapy, 29, 257–276. doi:10.1017/S1352465801003010
63.
MorrisonA. P.BurkeE.MurphyE.PyleM.BoweS.VareseF.. . . WoodL. J. (2016). Cognitive therapy for internalised stigma in people experiencing psychosis: A pilot randomised controlled trial. Psychiatry Research, 240, 96–102. doi:10.1016/j.psychres.2016.04.024
64.
MorrisonA. P.WellsA. (2007). Relationships between worry, psychotic experiences and emotional distress in patients with schizophrenia spectrum diagnoses and comparisons with anxious and non-patient groups. Behaviour Research and Therapy, 45, 1593–1600. doi:10.1016/j.brat.2006.11.010
65.
NobleH.SmithJ. (2015). Issues of validity and reliability in qualitative research. Evidence-Based Nursing, 18, 2, 34-35. doi:10.1136/EB-2015-102054
66.
NordentoftM.WahlbeckK.HällgrenJ.WestmanJ.ÖsbyU.AlinaghizadehH.. . . LaursenT. M. (2013). Excess mortality, causes of death and life expectancy in 270,770 patients with recent onset of mental disorders in Denmark, Finland and Sweden. PLoS ONE, 8(1), e55176. doi:10.1371/journal.pone.0055176
67.
PattonM. Q. (1990). Qualitative evaluation and research methods. Newbury Park, CA: Sage.
68.
PerryB. M.TaylorD.ShawS. K. (2007). “You’ve got to have a positive state of mind”: An interpretative phenomenological analysis of hope and first episode psychosis. Journal of Mental Health, 16, 781–793. doi:10.1080/09638230701496360
PowersW. T. (2005). Behavior: The control of perception. New Canaan, CT: Benchmark.
71.
ReadJ.BentallR. P.FosseR. (2015). Time to abandon the bio-bio-bio model of psychosis: Exploring the epigenetic and psychological mechanisms by which adverse life events lead to psychotic symptoms. Epidemiologia e Psichiatria Sociale, 18, 299–310. doi:10.1017/S1121189X00000257
72.
ReadJ.Van OsJ.MorrisonA. P.RossC. A. (2005). Childhood trauma, psychosis and schizophrenia: A literature review with theoretical and clinical implications. Acta Psychiatrica Scandinavica, 112, 330–350. doi:10.1111/j.1600-0447.2005.00634.x
73.
ReadingB.BirchwoodM. (2005). Early intervention in psychosis. Disease Management & Health Outcomes, 13, 53–63. doi:10.2165/00115677-200513010-00006
74.
RidnerS. H. (2004). Psychological distress: Concept analysis. Journal of Advanced Nursing, 45, 536–545. doi:10.1046/j.1365-2648.2003.02938.x
75.
RollnickS.MillerW. R. (1995). What is motivational interviewing?Behavioural and Cognitive Psychotherapy, 23, 325–334. doi:10.1017/S135246580001643X
76.
SandelowskiM.DochertyS.EmdenC. (1997). Qualitative metasynthesis: Issues and techniques. Research in Nursing & Health, 20, 365–371. doi:10.1002/(SICI)1098-240X(199708)20:4<365::AID-NUR9>3.0.CO;2-E
77.
ShentonA. K. (2004). Strategies for ensuring trustworthiness in qualitative research projects. Education for Information, 22, 63–75. doi:10.3233/EFI-2004-22201
78.
StewartK. D. (2013). Factors contributing to engagement during the initial stages of treatment for psychosis. Qualitative Health Research, 23, 336–347. doi:10.1177/1049732312468337
79.
SyedM.NelsonS. C. (2015). Guidelines for establishing reliability when coding narrative data. Emerging Adulthood, 3, 375–387. doi:10.1177/2167696815587648
80.
TaiS. J. (2009). Using perceptual control theory and the method of levels to work with people who experience psychosis. The Cognitive Behaviour Therapist, 2, 227–242. doi:10.1017/S1754470X09990134
81.
TaiS. J. (2016). An introduction to using the method of levels (MOL) therapy to work with people experiencing psychosis. American Journal of Psychotherapy, 70, 125–148. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/27052610
82.
TanR.GouldR. V.CombesH.LehmannS. (2014). Distress, trauma, and recovery: Adjustment to first episode psychosis. Psychology and Psychotherapy: Theory, Research and Practice, 87, 80–95. doi:10.1111/j.2044-8341.2012.02073.x
83.
TanskanenS.MorantN.HintonM.Lloyd-EvansB.CrosbyM.KillaspyH.. . . JohnsonS. (2011). Service user and carer experiences of seeking help for a first episode of psychosis: A UK qualitative study. BMC Psychiatry, 11, Article 157. doi:10.1186/1471-244X-11-157
84.
ThomasJ.HardenA. (2008). Methods for the thematic synthesis of qualitative research in systematic reviews. BMC Medical Research Methodology, 8, Article 45.
85.
TongA.FlemmingK.McinnesE.OliverS.CraigJ. (2012). Enhancing transparency in reporting the synthesis of qualitative research: ENTREQ. BMC Medical Research Methodology, 12, Article 181. doi:10.1186/1471-2288-12-181
86.
UpthegroveR.BirchwoodM.RossK.BrunettK.McCollumR.JonesL. (2010). The evolution of depression and suicidality in first episode psychosis. Acta Psychiatrica Scandinavica, 122, 211–218. doi:10.1111/j.1600-0447.2009.01506.x
87.
Van OsJ.HanssenM.BijlR. V.RavelliA. (2000). Strauss (1969) revisited: A psychosis continuum in the general population?Schizophrenia Research, 45(1–2), 11–20. doi:10.1016/S0920-9964(99)00224-8
88.
van SchalkwykG. I.DavidsonL.SrihariV. (2015). Too late and too little: Narratives of treatment disconnect in early psychosis. Psychiatric Quarterly, 86, 521–532. doi:10.1007/s11126-015-9348-4
89.
VracotasN.SchmitzN.JooberR.MallaA. (2007). Subjective distress in first-episode psychosis: Role of symptoms and self-esteem. Early Intervention in Psychiatry, 1, 251–258. doi:10.1111/j.1751-7893.2007.00034.x
90.
WalshD.DowneS. (2005). Meta-synthesis method for qualitative research: A literature review. Journal of Advanced Nursing, 50, 204–211. doi:10.1111/j.1365-2648.2005.03380.x
91.
WoodL.BurkeE.ByrneR.PyleM.ChapmanN.MorrisonA. (2014). Stigma in psychosis: A thematic synthesis of current qualitative evidence. Psychosis, 7, 152-165. doi:10.1080/17522439.2014.926561
92.
WoodL.BurkeE.MorrisonA. (2015). Individual cognitive behavioural therapy for psychosis (CBTp): A systematic review of qualitative literature. Behavioural and Cognitive Psychotherapy, 43, 285–297. doi:10.1017/S1352465813000970
93.
YardleyL.BishopF. (2007). Mixing qualitative and quantitative methods: A pragmatic approach. In WilligC.Stainton-RogersW. (Eds.), The SAGE handbook of qualitative research in psychology (pp.352-370). London: Sage. doi:10.4135/9781848607927.n20
94.
YardleyL.BishopF. L. (2015). Using mixed methods in health research: Benefits and challenges. British Journal of Health Psychology, 20(1), 1–4. doi:10.1111/bjhp.12126
95.
YungA. R.McGorryP. D. (1996). The initial prodrome in psychosis: Descriptive and qualitative aspects. Australian and New Zealand Journal of Psychiatry, 30, 587–599.
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