The objective of this review is to synthesize the best available evidence on the lived experience of carers of a relative with a first-episode psychosis (FEP) and in particular their experience preceding and of seeking help.
More specifically, the objectives are to explore:
Perceived promoters and inhibitors to help-seeking during a FEP.
Perceived barriers and facilitators to accessing services during a FEP.
Psychotic disorders are low prevalence disorders, affecting between 1-2% of the adult population.1 Onset of first-episode psychosis (FEP), the first presentation of psychotic symptoms, is typically during late adolescent and early adult years.1, 2 Positive psychotic symptoms may include hallucinations, delusions, disorganized speech and behaviour.3, 4 Onset may be sudden or insidious, though most individuals experience a prodromal phase manifested by the gradual development of a variety of signs and symptoms that are commonly vague and nonspecific e.g. functional and social decline, sleep disturbance and mood symptoms.4-6 Individuals detected in this phase are considered to be ‘ultra high risk’ clinically, though development of psychosis is not inevitable.7 Though low in prevalence, psychotic disorders account for a high proportion of resources allocated to mental health services and are associated with significant challenges for those with the illness as well as their families.1, 2 During late adolescent and early adult years a young person is developing in many areas including formation of friendships, vocational goals, and general independence.2 The experience of mental illness during these formative years can divert a person from the trajectory of normal life development and significantly disrupt the person's life goals.8, 9 For those presenting at a later stage in life, other developmental issues will be of importance such as partners and children.10 A recent Australian national survey of people living with a psychotic illness, designed to capture the impact of psychosis, concluded that ‘psychosis is associated with substantial and persistent disability’.2(p.97) More specifically, participants named the following challenges: financial difficulties (42.7%), loneliness (37.2%), unemployment (35.1%), poor physical health (27.4%) uncontrolled symptoms of mental illness (25.7%), lack of stable/suitable housing (18.1%) and stigma (11.6%).2 Whilst some people will experience one psychotic episode and obtain full recovery, a significant number (61.5%) reported recurrent episodes with good or partial recovery during episodes and 30.5% experienced a continuous chronic illness.2
Early intervention for FEP has been a focus of care for several decades. It arose from the premise that the early years of illness are a ‘critical period’ for intervention when there can be significant decline but also most scope for influencing longer term prognosis.9, 11, 12 The main aims of such services are to shorten the course of the initial psychotic episode, reduce the severity of the illness, and subsequently minimize disruption to the person's life.9, 12 Key components of early intervention include medication to reduce symptoms and psychosocial interventions aimed at supporting the individual's recovery.13 Even after onset of psychosis there is typically a delay in accessing appropriate treatment.14 The period of time between onset of first psychotic symptom and first treatment, referred to as the duration of untreated psychosis (DUP), has been a major focus of research and intervention. This is because DUP is considered to be an important and malleable prognostic factor. A systematic review to establish whether DUP is associated with prognosis included a meta-analysis of 26 studies from diverse cultural backgrounds including 4490 participants.15 The results showed there is evidence of a moderate association between DUP and symptomatic and functional outcome in the short term (6-12 month follow up), though it remains inconclusive as to whether reducing a person's DUP improves overall prognosis. Mean DUP was found to be two years.15 The Treatment and Intervention in Psychosis (TIPS) early detection and intervention programme in Norway successfully reduced median DUP from 16 to 5 weeks.16 At ten-year follow up, though reported symptoms were comparable across the early detection group and usual detection group, there were significant gains in recovery for the early detection group due to increased employment.17 Reducing DUP remains a common service goal.13
DUP is typically long, meaning individuals18 and their families19-21 are often required to cope with distressing symptoms for many months or longer. Many individuals and families report high levels of distress during the stage of untreated psychosis. First-episode psychosis is a high-risk period for suicidality22 which is important as previous suicide attempts are predictors of later attempts and completed suicide.23 Gersen et al24 found that families of relatives with a FEP predominantly use adaptive coping strategies. In contrast, families of individuals with a more chronic illness reportedly use increased maladaptive strategies, suggesting the impact of burden and stress of care over time on coping.24, 25 A recent systematic review measuring the effectiveness of early intervention on clinical outcome was inconclusive, with the exception of sustained positive impact in the areas of employment and family.26 Whilst this may have implications for future funding directives, it does not reduce the need for individuals with a FEP to receive early and appropriate intervention. Minimising the impact of psychosis for individuals and improving outcome remains a priority in Clinical Practice Guidelines in many countries.3, 27, 28 Quick and timely access to services can positively impact on the distress experienced by both the ill person and their families. Reaching those individuals experiencing a FEP during the early stages of illness requires ‘early detection of psychosis in the community and understanding factors associated with and contributing to delay in help-seeking’.14(p.76)
The literature related to pathways to care explores barriers and facilitators to accessing services. This encompasses help-seeking behaviour, accessibility of services and service response.9, 29, 30 Help-seeking can be defined as ‘“the behaviour of actively seeking help from other people” (Rickwood, Deane, Wilson, & Ciarrochi, 2005, p. 4)31 and can be directed towards formal sources, such as mental health professionals, or informal sources, such as family and friends’ (Dr Coralie Wilson, personal communication, 2012 Mar 27). For young people informal sources are the preferred source of help.31, 32 In FEP it is frequently family members that initiate successful contacts for their relatives20, 33 and often without the affected individual participating in the contact.34 Before help-seeking can occur there needs to be a recognition that the person is in need of help.32 Recognition that a disorder is developing, knowledge of treatment options and knowledge of effective help-seeking strategies are all components of ‘mental health literacy’.32 Community surveys of mental health literacy show that many people are unable to recognize mental illness, though there is evidence that improvements can be made by education strategies at a community level.16, 32 This knowledge is now impacting upon policy development, with programmes designed to develop people's mental health literacy and help-seeking skills.16, 27, 32, 35 In a systematic review aiming to understand and measure pathways to care in FEP, Singh14 notes that there remains a delay for relatives to seek help even when a problem has become evident. Understanding individuals' personal narratives and journeys is one method of enhancing understanding of the processes that affect help-seeking.14
Delays in accessing appropriate treatment arise at all levels including illness recognition, help-seeking and service response. Help-seeking is just one factor that can impact on delay to treatment.36 Delays at service level can also be significant and for varied reasons, e.g. lack of affordable services, inflexibility of appointments37 and delayed diagnosis within mental health services.38 Common themes relating to delayed help-seeking include: stigma, misattribution of symptoms (e.g. drugs, stress or typical changes of adolescence), not knowing where to go, hope that the symptoms will go away without intervention, and a raised threshold for seeking help.5, 39, 40 Factors associated with successful help-seeking include: frank psychotic symptoms, depression and suicidal thinking and reaching a crisis.5, 18, 20 When studies include both individuals and families of FEP, considerable congruence is reported in themes and experiences when help-seeking.18, 21
Research to date provides information regarding potential barriers and facilitators to help-seeking in a FEP. Increased awareness of the impact of prolonged DUP and benefits of early intervention has driven the need to further explore and understand the pathways to care for people experiencing a FEP. A preliminary search of the literature reveals qualitative studies exploring individuals' and their carers' experiences of help-seeking during a FEP.5, 21, 41 Carers play a crucial role in accessing help for relatives14, 21, often being the primary and sole help-seeker.34
A search of the Cochrane Library, Joanna Briggs Institute Library of Systematic Reviews, PubMed, CINAHL and PROSPERO databases did not reveal any previous or planned systematic reviews of qualitative evidence on this topic. A synthesis of the relevant studies of carers' experiences will add to the understanding of illness recognition, help-seeking strategies utilized and service response and may provide important information regarding pathways to care for those experiencing a FEP.
Definition of terms
First-episode psychosis (FEP)
For the purpose of this review all operational definitions of FEP will be considered. This means first-episode may be defined as first treatment contact, duration of antipsychotic medication use or duration of psychosis.42
Types of participants
This review will consider studies that include carers of a relative with a FEP. This means first presentation of psychotic symptoms with no limit to duration of untreated psychosis. Method of diagnosis may be according to any of the editions of the Diagnostic and Statistical Manual of Mental Disorders (DSM), International Statistical Classification of Diseases (ICD), research diagnostic criteria relevant to the country of study or confirmed by a psychiatrist or other health care professional.
Psychotic symptoms may include hallucinations and delusions.
Psychotic disorders may include:
Mania with psychotic symptoms
Depression with psychotic symptoms
Acute and transient psychotic disorders
Other and unspecified non-organic psychotic disorder.
There will be no age restriction for the person experiencing the psychosis.
Carers could be a parent, sibling, spouse or other relative of any age.
Studies that predominantly include individuals in the prepsychotic or ultra high-risk stage of illness will be excluded due to the ‘low’ conversion rate to psychosis.
Types of intervention(s)/phenomena of interest
This review will consider studies that investigate the experience of carers of a relative with a first-episode psychosis, and in particular their experience preceding and of seeking help from both informal (family and friends) and formal (services) sources.
Types of outcomes
The review will consider research conducted in any mental health care setting including inpatient, outpatient and community.
Types of studies
This review will consider studies that focus on qualitative data including, but not limited to, designs such as phenomenology, grounded theory, ethnography, action research and feminist research.
In the absence of research studies, other text such as opinion papers and reports will be considered.
The search strategy aims to find both published and unpublished studies. A three-step search strategy will be utilized in this review. An initial limited search of MEDLINE and CINAHL will be undertaken followed by analysis of the text words contained in the title and abstract, and of the index terms used to describe article. A second search using all identified keywords and index terms will then be undertaken across all included databases. Thirdly, the reference list of all identified reports and articles will be searched for additional studies. Studies published in English will be considered for inclusion in this review.
Studies published between January 1990 and August 2012 will be considered for inclusion in this review. This is due to focus of care on first-episode psychosis and pathways to care developing in the early 1990's.
The databases to be searched include:
CINAHL, PubMed, Scopus, PsycINFO and Embase.
The search for unpublished studies will include:
Mednar, ProQuest Dissertations and Theses, Trove, relevant professional bodies in the field of Early Intervention in Psychosis and carers in mental health.
Initial keywords to be used will be:
help-seeking; care-givers; first-episode psychosis; qualitative.
Assessment of methodological quality
Papers selected for retrieval will be assessed by two independent reviewers for methodological validity prior to inclusion in the review using standardized critical appraisal instruments from the Joanna Briggs Institute Qualitative Assessment and Review Instrument (JBI-QARI) (Appendix I). Any disagreements that arise between the reviewers will be resolved through discussion, or with a third reviewer.
Data will be extracted from qualitative research papers included in the review using the standardized data extraction tool from JBI-QARI (Appendix I). The data extracted will include specific details about the phenomena of interest, populations, study methods and outcomes of significance to the review question and specific objectives.
Qualitative research findings will, where possible, be pooled using JBI-QARI. This will involve the aggregation or synthesis of findings to generate a set of statements that represent that aggregation, through assembling the findings rated according to their quality, and categorising these findings on the basis of similarity in meaning. These categories are then subjected to a meta-synthesis in order to produce a single comprehensive set of synthesized findings that can be used as a basis for evidence-based practice. Where textual pooling is not possible, the findings will be presented in narrative form.
Conflicts of interest
There are no conflicts of interest.
Dr Melanie Attard BSc (Hons), PhD, Postdoctoral Research Fellow, The Joanna Briggs Institute, Faculty of Health Science, The University of Adelaide: Secondary Reviewer.
As this systematic review forms partial submission for the award of Masters of Clinical Sciences through the Joanna Briggs Institute and University of Adelaide, the secondary reviewer will be used only for critical appraisal.
Assoc Prof Sharon Lawn Flinders Human Behaviour and Health Research Unit, Margaret Tobin Centre, Flinders University: For advice around protocol development.
1. Jablensky A, Sartorius N, Ernberg G, Anker M, Korten A, Cooper JE, Day R, Bertelsen A. Schizophrenia: manifestations, incidence and course in different cultures. A World Health Organization ten-country study. Psychol Med Monogr Suppl.1992; 20:1-97.
2. Morgan VA, Waterreus A, Jablensky AV, Mackinnon A, McGrath J, Carr V, Bush R, Castle D, Cohen M, Harvey C, Galletly C, Stain H, Neil A, McGorry P, Hocking B, Shah S, Saw S. People living with psychotic illness 2010. Report on the second Australian national survey. Australian Government. Department of Health and Ageing. [cited May 12 2012]. Available from: http://health.gov.au/internet/main/publishing.nsf/Content/mental-pubs-p-psych10
3. McGorry P, Killackey E, Lambert T, Lambert M, Jackson H, Codyre D, James N, Pantelis C, Pirkis J, Jones P, Durie MA., McGrath J, McGlashan T, Malla A, Farhall J, Hermann H, Hocking B, Royal Australian New Zealand, Coll. Royal Australian and New Zealand College of Psychiatrists clinical practice guidelines for the treatment of schizophrenia and related disorders. Aust N Z J Psychiatry.2005; 39(1-2): 1-30.
4. American Psychiatric Association. Diagnostic and statistical manual of mental disorders - fourth edition- text revision. 2000.
5. Corcoran C, Gerson R, Sills-Shahar R, Nickou C, McGlashan T, Malaspina D, Davidson L. Trajectory to a first episode of psychosis
: a qualitative research study with families. Early Interv Psychiatry.2007; 1(4): 308-315.
6. Yung AR, McGorry PD. The initial prodrome in psychosis
: descriptive and qualitative aspects. Aust N Z J Psychiatry.1996; 30(5): 587-599.
7. McGorry PD, Yung AR, Phillips LJ. The “close-in” or ultra high-risk model: a safe and effective strategy for research and clinical intervention in prepsychotic mental disorder. Schizophr Bull.2003; 29(4): 771-790.
8. Harris A, Brennan J, Anderson, J, Taylor A, Sanbrook M, Fitzgerald D, Lucas S, Redoblado-Hodge A, Gomes L, Gordon E. Clinical profiles, scope and general findings of the Western Sydney first episode psychosis
project. Aust N Z J Psychiatry.2005; 39(1-2): 36-43.
9. Birchwood M, Todd P, Jackson C. Early intervention in psychosis
: the critical-period hypothesis. Int Clin Psychopharmacol.1998; 13. S31-S40.
10. Castle, D J. The truth, and nothing but the truth, about early intervention in psychosis
. Aust N Z J Psychiatry.2012; 46(1): 10-13.
11. Harrison G, Hopper K, Craig T, Laska E, Siegel C, Wanderling J, Dube KC, Ganev K, Giel R, An der Heiden W, Holmberg SK, Janca A, Lee PWH, Leon CA., Malhotra S, Marsella AJ, Nakane Y, Sartorius N, Shen Y, Skoda C, Thara R, Tsirkin SJ, Varma VK, Walsh D, Wiersma D. Recovery from psychotic illness: a 15- and 25-year international follow-up study. Br J Psychiatr.2001; 178: 506-517.
12. Reading B, Birchwood M. Early intervention in psychosis
- rationale and evidence for effectiveness. Disease Management & Health Outcomes.2005; 13(1): 53-63.
13. Orygen Youth Health Research Centre. Early psychosis
feasibility study report. 2011. Australian Government. Department of Health and Ageing. [cited May 12]. Available from: http://www.health.gov.au/internet/main/publishing.nsf/Content/mental-pubs-e-earlypsy
14. Singh SP, Grange T. Measuring pathways to care in first-episode psychosis
: a systematic review. Schizophr Res.2006; 81(1): 75-82.
15. Marshall M, Lewis S, Lockwood A, Drake R, Jones P, Croudace T. Association between duration of untreated psychosis
and in cohorts of first-episode outcome patients - a systematic review. Arch Gen Psychiatry.2005; 62 (9): 975-983.
16. Joa I, Johannessen JO, Auestad B, Friis S, McGlashan T, Melle I, Opjordsmoen S, Simonsen E, Vaglum P, Larsen TK. The key to reducing duration of untreated first psychosis
: information campaigns. Schizophr Bull.2008; 34(3): 466-472.
17. Hegelstad W, Larsen TK, Auestad B, Evensen J, Haahr U, Joa I, Johannesen JO, Langeveld J, Melle I, Opjordsmoen S, Rossberg JI, Rund BR, Simonsen E, Sundet K, Vaglum P, Friis S, McGlashan T. Long-term follow-up of the TIPS early detection in psychosis
study: effects on 10-year outcome. Am J Psychiatry.2012; 169(4): 374-380.
18. Tanskanen S, Morant N, Hinton M, Lloyd-Evans B, Crosby M, Killaspy H, Raine R, Pilling S, Johnson S. Service user and carer experiences of seeking help for a first episode of psychosis
: a UK qualitative study. BMC Psychiatry.2011; 11: 157
19. Addington J, Coldham EL, Jones B, Ko T, Addington D. The first episode of psychosis
: the experience of relatives. Acta Psychiatr Scand.2003; 108(4): 285-289.
20. Czuchta DM. and McCay E. Help-seeking
for parents of individuals experiencing a first episode of schizophrenia. Arch Psychiatr Nurs.2001; 15(4): 159-170.
21. Cadario E, Stanton J, Nicholls P, Crengle S, Wouldes T, Gillard M, Merry SN. A qualitative investigation of first-episode psychosis
in adolescents. Clin Child Psychol Psychiatry.2012; 17(1): 81-102.
22. Melle I, Johannessen JO, Friis S, Haahr U, Joa I, Larsen TK., Opjordsmoen S, Rund BR, Simonsen E, Vaglum P, McGlashan T. Course and predictors of suicidality over the first two years of treatment in first-episode schizophrenia spectrum psychosis
. Arch Suicide Res.2010; 14 (2): 158-170.
23. Hawton K, Sutton L, Haw C, Sinclair J, Deeks JJ. Schizophrenia and suicide: systematic review of risk factors. Br J Psychiatry.2005; 187(1): 9-20.
24. Gerson R, Wong C, Davidson L, Malaspina D, McGlashan T, Corcoran C. Self-reported coping strategies in families of patients in early stages of psychotic disorder: an exploratory study. Early Interv Psychiatry.2011; 5(1): 76-80.
25. Fortune DG, Smith JV, Garvey K. Perceptions of psychosis
, coping, appraisals, and psychological distress in the relatives of patients with schizophrenia: an exploration using self-regulation theory. Br J Clin Psychol.2005; 44(3): 319-331.
26. Marshall M. and Rathbone J. Early intervention for psychosis
. Cochrane Database Syst Rev. [Internet] 2011. [cited 2012 Apr 4]. Available from: http://onlinelibrary.wiley.com/doi/10.1002/14651858.CD004718.pub3/abstract;jsessionid=4082CD37A89D63FBF033852CAA918188.d03t01
27. Ten year roadmap for national mental health reform: draft. 2012. Australian Government. Department of Health and Ageing. [cited May 12 2012]. Available from: http://www.health.gov.au/internet/main/publishing.nsf/Content/mental-pubs-t-roadmap
28. NICE clinical guidelines for Schizophrenia. Core interventions in the treatment and management of schizophrenia in adults in primary and secondary care. UK. 2009. [cited May 12 2012]. Available from: http://www.nice.org.uk/CG82
29. Singh SP. Outcome measures in early psychosis
- relevance of duration of untreated psychosis
. Br J Psychiatry.2007; 191: S58-S63.
30. Anderson KK, Fuhrer R, Malla AK. The pathways to mental health care of first-episode psychosis
patients: a systematic review. Psychol Med.2010; 40(10): 1585-1597.
31. Rickwood D, Deane FP, Wilson CJ, Ciarrochi J. Young people's help-seeking
for mental health problems. Australian e-Journal for the Advancement of Mental Health.2005; 4(3): Supp.
32. Jorm AF. Mental health literacy: empowering the community to take action for better mental health. American Psychol.2012; 67(3): 231-43.
33. Addington J, Van Mastrigt S, Hutchinson J, Addington D. Pathways to care: help seeking behaviour in first episode psychosis
. Acta Psychiatr Scand.2002; 106(5): 358-364.
34. O'Callaghan E, Turner N, Renwick L, Jackson D, Sutton M, Foley SD, McWilliams S, Behan C, Fetherstone A, Kinsella A. First episode psychosis
and the trail to secondary care: help-seeking
and health-system delays. Soc Psychiatry Psychiatr Epidemiol.2010; 45(3): 381-391.
35. Wilson CJ, Bushnell JA, Caputi P. Early access and help seeking: practice implications and new initiatives. Early Interv Psychiatry.2011; 5: 34-39.
36. Lincoln CV. and McGorry P. Who cares? - pathways to psychiatric-care for young-people experiencing a first episode of psychosis
. Psychiatric Services.1995; 46(11): 1166-1171.
37. Bergner E, Leiner AS, Carter,T, Franz L, Thompson NJ, Compton MT. The period of untreated psychosis
before treatment initiation: a qualitative study of family members
' perspectives. Compr Psychiatry.2008; 49(6): 530-536.
38. Norman RMG, Malla AK, Verdi MB, Hassall LD, Fazekas C. Understanding delay in treatment for first-episode psychosis
. Psychol Med.2004; 34(2): 255-266.
39. Judge AM, Estroff SE, Perkins, DO, Penn DL. Recognizing and responding to early psychosis
: a qualitative analysis of individual narratives. Psychiatric Services.2008; 59(1): 96-99.
40. Ienciu M, Romosan F, Bredicean C, Romosan R. First episode psychosis
and treatment delay- causes and consequences. Psychiatr Danub.2010; 22(4): 540-543.
41. McCann TV, Lubman DI, Clark E. First-time primary caregivers' experience of caring for young adults with first-episode psychosis
. Schizophr Bull.2011; 37(2): 381-388.
42. Breitborde NJK, Srihari VH, Woods SW. Review of the operational definition for first-episode psychosis
. Early Interv Psychiatry.2009; 3(4): 259-265.
Appendix I: Appraisal instruments
QARI Appraisal instrument
Appendix II: Data extraction instruments
QARI data extraction instrument