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Early Intervention in Psychiatry 2014; ••: ••–••

doi:10.1111/eip.12157

Review Article Family members’ experience of seeking help for first-episode psychosis on behalf of a loved one: a meta-synthesis of qualitative research Victoria A. Cairns,1 Graeme S. Reid2 and Craig Murray3 Abstract

1 Department of Pain Management, Royal Preston Hospital, Preston, 2Lancashire Care NHS Foundation Trust, Scarisbrick Centre, Ormskirk and District General Hospital, Ormskirk, and 3Division of Health Research , Furness College, Lancaster University, Lancaster, UK

Corresponding author: Dr Victoria Cairns, Department of Pain Management, Royal Preston Hospital, Sharoe Green Lane North, Preston PR2 9HT, UK. Email: [email protected] Received 18 November 2013; accepted 29 April 2014

Aim: Family members often play a vital role in seeking help for loved ones experiencing first-episode psychosis. Understanding this experience is crucial in facilitating the helpseeking process. Qualitative research offers valuable insight into the lived experience of family members who seek help on behalf of a loved one experiencing first-episode psychosis. Method: The current research presents a systematic review of qualitative studies exploring the family member experience of seeking help for first-episode psychosis. Results: A meta-synthesis of 13 qualitative studies has revealed four themes relating to family members’

Conclusions: The findings provide a novel insight into this experience, suggesting implications for clinical practice. These include a focus upon the facilitation of early positive interactions with family members and for first-episode psychosis to be presented to families in a normalizing manner. The need for future research that examines the experience of those who do not seek help from health services is discussed.

Key words: family member, help seeking, meta-synthesis, psychosis.

INTRODUCTION Pathways to care for individuals encountering firstepisode psychosis1 (FEP) are recognized as complex, highly varied and diverse.2 Numerous individual and service-related factors have been identified as both facilitating and delaying help seeking during FEP.1 Early help seeking has been associated with the presence of positive psychotic experiences (e.g. hallucinations and delusions), mood disturbance, overall exacerbation of decline in well-being and risk regarding harm.1,3 Alternatively, barriers to help seeking include an attribution of changes to things other than psychosis,4 withdrawal and ignoring/ attempting to hide experiences from others,5 and a lack of social network and/or knowledge of where to seek help.6,7 © 2014 Wiley Publishing Asia Pty Ltd

experience of seeking help for firstepisode psychosis. These include a sense of not knowing, the reaching of crisis point, the impact upon the family member and the mediating role of interactions with others. A further synthesis of translation captures the interaction of these themes within this experience.

Addressing barriers to help seeking has been the focus of numerous studies and interventions, for example, the early Treatment and Intervention in Psychosis Study (TIPS) of Scandinavia.8,9 Such projects have demonstrated a positive impact upon help seeking by raising awareness of psychosis and sources of help through educational information campaigns targeted at the general population, schools and general practitioners (GPs).9–11 With FEP typically experienced during early adulthood and an estimated 60–70% of individuals living within the family home,12 family members often play a vital role in seeking help on behalf of their loved ones.13,14 Contradictory findings have been reported regarding the relationship between family involvement (defined as where at least one family member is actively involved in seeking help for the individual) and help seeking. Within a 1

Family experiences of help seeking for FEP predominantly white British sample, family involvement has been found to reduce the length of time between onset of psychosis and the commencement of treatment (also known as the duration of untreated psychosis; DUP).15 In contrast, within an African-American population, family involvement has been found to lengthen DUP.16 Such contradictory findings could be explained by methodological variations between studies; however, Compton et al.16 suggest a role for socioculturally influenced beliefs regarding mental health, in increasing African-American family members’ caring efforts, consequentially lengthening DUP for this population. Despite the wealth of quantitative literature focused on symptomatology, determinants, and factors involved in psychosis and help seeking, the body of literature aimed at understanding the lived experience of individuals and their family members during this process remains limited. As suggested by Lincoln et al. (p. 21),14 searching for a greater understanding of the help-seeking process through the exploration of lived experience may assist in the planning of more ‘visible, constructive and generally efficacious gateways and pathways to mental health services’. Furthermore, understanding the role and experience of families within the help-seeking process is also recognized as essential for the development of services that aim to support carers17 and in designing successful early intervention.18 Findings from individual qualitative studies are each of great value and interesting; however, the synthesis of existing qualitative data has been recognized as essential to reaching ‘higher analytic goals’ (p. 367),19 including enhancing the generalizabilty of qualitative research findings. The current review utilizes Noblit and Hare’s20 process of metaethnography to synthesize study findings and explore how family members experience seeking help for FEP on behalf of a loved one. METHOD Search procedure Studies for inclusion were identified through a systematic search of the electronic databases PsycINFO (searchable years 1806–2013), AMED (searchable years 1986–2013), CINAHL (searchable years 1981–2013), Web of Science (searchable years 1900–2013), Medline (searchable years 1909–2013) and PubMed (searchable years 1966–2013). This was approached by initially searching using the terms: [‘Psychosis’ OR ‘Schizophrenia’] AND [‘Help seek*’ OR ‘Treatment seek*’ OR ‘Treatment initiation’ OR 2

‘Care Pathway’]. The outcome of this was then cross-referenced with a search using terms: [‘Family member’ OR ‘Caregiver’ OR ‘Mother’ OR ‘Father’ OR ‘sibling’ OR ‘Parent’ OR ‘Relative’]. The limits of peer-reviewed journal and English language were applied wherever possible. This search process was repeated in each database, identifying 782 potentially relevant articles (across all databases). The titles of these were read and 729 articles (including duplicates where these were identified across databases – exact numbers unavailable due to cross-referencing difficulties) were initially excluded based upon titles that clearly indicated the study to be inappropriate for review when considered against the inclusion/exclusion criteria outlined below. Fifty-three abstracts were read for further clarification and an additional 36 articles were excluded at this point. This resulted in the preliminary identification of 17 articles considered for review. Upon closer inspection, seven of these were further excluded for reasons described in Figure 1. Additional manual searches of reference lists identified a further two articles for review, and at the point of review for publication an expert reviewer identified one further article that had not been returned in the search but was found to meet the inclusion criteria, and so was included. This resulted in the final 13 identified articles (this process is displayed in Fig. 1). Articles were included where: (i) data were collected using qualitative methodology; (ii) the research question focused explicitly upon understanding the help-seeking experience for FEP or, where this explored the wider experience of FEP, the findings included detail of the help-seeking experience; (iii) data were collected from family members regarding their experiences in this area; (iv) the article was published within a peer-reviewed journal; and (v) the article was written in English language. Articles were excluded if: (i) the data were not subjected to qualitative analysis and/or the author did not include direct quotations from interviews; (ii) upon closer inspection of findings, the themes did not provide detail of the lived experience of the help-seeking process; and (iii) data pertaining specifically to the family member experience could not be extracted from within the study findings. Study characteristics The 13 included articles reported findings from studies carried out across a diverse range of settings. These represented the help-seeking experience within both urban and rural communities in the UK, © 2014 Wiley Publishing Asia Pty Ltd

V. A. Cairns et al. FIGURE 1. Search procedure and outcome.

Numbers of articles retrieved through the initial search: PubMed= 236 Web of Science = 243 CINHAL = 33

PsycINFO = 173 AMED = 0 Medline = 97

Total titles read for initial consideration = 782 Total abstracts read for further clarification = 53

Number of studies initially meeting inclusion criteria = 17

Excluded after closer inspection due to: unable to tease apart family member experience = 1 - research findings unhelpful for current research question = 2 Data not subjected to true qualitative analysis = 3 Unable to tease apart data only relevant to FEP =1

Additional studies identified from reference lists of those identified through search = 2 (Muhlbauer, 2002; Tuck et al., 1997)

Addional study idenfied by expert reviewer (McCann et al., 2012).

Remaining 13 studies included within meta-synthesis

Canada, USA, Hong Kong, Brazil, Australia and New Zealand. Six studies focused explicitly upon the helpseeking behaviour of families with a loved one experiencing FEP.21–26 The remaining seven provided © 2014 Wiley Publishing Asia Pty Ltd

an insight into the family help-seeking experience while addressing varying research questions relating to caring for a family member experiencing FEP.27–33 Further methodological details are displayed in Table 1. 3

4

How does a parent describe the experience of help seeking for his/her son/daughter who has experienced a first episode of schizophrenia? Aim: to examine the development and process of severe mental illness (including schizophrenia) from a family member/caregiver’s perspective

Aim: to explore the phenomenon of caring for an adult child with schizophrenia Aim: to identify the roles and functions played by others and other underlying factors influencing the help-seeking pathways of caregivers of a relative suffering from early psychosis Aim: to investigate service users and carers’ experiences of the onset of psychosis and help seeking

Why are delays of more than 6 months to seek psychiatric counselling a common practice for relatives of persons having suffered a first psychotic episode in Sao Paulo? Aim: to understand the lived experiences of first-time primary caregivers of young adults with FEP, with a focus upon the help-seeking process Aim: to understand the experiences of families of individuals with recent onset psychosis and to gain insight into how treatment services for FEP can be improved

1

3

6

8

7

5

4

2

Study research question/aims

Study

20 parents of children hospitalized for FEP in Canada. No ethnicity information reported.

26 relatives of individuals with severe mental illness in USA. Midwestern Caucasian.

9 parents of adults with schizophrenia in Tennessee, USA. 1 African American, 8 whites. 58 family members of relatives accessing the EASY in Hong Kong. Additional ethnicity information not reported.

21 service users currently accessing a London NHS Early Intervention service and 9 family member carers of this client group (unmatched to service users). Carers’ ethnicities: 7 whites, 1 black Caribbean, 1 mixed race. 15 relatives of patients currently accessing the PEP in Sao Paulo, Brazil. No further ethnicity reported.

20 family member caregivers of service users from FEP services in Melbourne, Australia. No ethnicity reported.

14 parents of a multi-ethnic sample (Caucasian, Hispanic, African American and East Asian) of patients accessing inpatient psychiatric care in New York, USA, regarding first-time experiences of psychosis

Czuchta & McCay (2001)23

Muhlbauer (2002)31

Tuck et al. (1997)32

Tanskanen et al. (2011)25

McCann et al. (2011)24

Gerson et al. (2009)29

Monteiro et al. (2006)30

Wong (2007)26

Sample

Author(s) and year

TABLE 1. Demographic information of studies included within meta-synthesis

Open-ended interviews

Semi-structured interviews

Semi-structured interviews

Semi-structured interviews

Semi-structured interviews

Semi-structured interviews

Semi-structured interviews

Semi-structured interviews

Method of data collection

Thematic analysis

IPA

Qualitative analysis involving identifying concepts and notions to develop analytic categories

Thematic analysis using qualitative analysis package Nvivo7

Coding of data to develop themes plus additional content analysis

Content analysis using qualitative software package NUD*IST and hand analysis involving coding, organizing and synthesizing Phenomenological informed thematic analysis

Thematic analysis

Type of analysis

Family experiences of help seeking for FEP

© 2014 Wiley Publishing Asia Pty Ltd

© 2014 Wiley Publishing Asia Pty Ltd

Aim: to address family members’ perceived experiences of stigma during treatment initiation for FEP

Aim: to explore common themes pertaining to the period of untreated psychosis before treatment initiation in hospitalized, urban, African-American FEP psychosis patients Aim: to examine by qualitative means the experience of FEP and the experience of accessing effective treatment from the perspectives of adolescents and their primary caregivers Aim: to elicit a trajectory of behavioural changes over time, the attributions, coping strategies and help-seeking patterns of family members of patients with recent onset non-affective psychotic disorders Aim: to explore primary caregivers’ experiences of responses by mental health clinicians when caring for a loved one with FEP

9

10

Family members of 13 patients within inpatient psychiatric services in New York, USA, diagnosed with recent onset non-affective psychotic disorders. Mixed ethnicity: 31% Caucasian, 38% African American, 15% Hispanic, 8% East Asian, 8% mixed. 20 familial caregivers of young people experiencing FEP in Melbourne, Australia. Ethnicity not reported but primary languages included English, Filipino, Spanish and Romanian.

Corcoran et al. (2007)22

McCann et al. (2012)33

12 young people and their carers currently accessing services in Auckland, New Zealand, for FEP. Sample ethnicity mixed: NZ European, NZ Maori, NZ Maori/Cook, Island Maori.

12 family members directly involved in treatment seeking for a relative with FEP in Atlanta, USA. African-American sample. 12 family members of patients within an inpatient setting in Atlanta, USA, experiencing FEP. African-American sample.

Sample

Cadario et al. (2012)21

Bergner et al. (2008)27

Franz et al. (2010)28

Author(s) and year

Semi-structured interviews

Semi-structured interviews

Combination of unstructured and semi-structured interviews

Semi-structured interviews

Semi-structured interviews

Method of data collection

IPA

Thematic analysis

Thematic analysis using qualitative software Nvivo7

Content analysis

Grounded theory

Type of analysis

EASY, Early Assessment Service for Young People with Psychosis; FEP, first-episode psychosis; IPA, interpretative phenomenological analysis; NZ, New Zealand; PEP, Psychotic Episode Program.

13

12

11

Study research question/aims

Study

TABLE 1. (continued)

V. A. Cairns et al.

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Family experiences of help seeking for FEP TABLE 2. Quality appraisal process applied to the included studies CASP question

Was there a clear statement of the aims of the research? Is qualitative methodology appropriate? Was the research design appropriate to address the aims? Was the recruitment strategy appropriate to the aims? Were the data collected in a way that addressed the research issue? Has the researcher/participant relationship been considered? Have ethical issues been considered? Was the data analysis sufficiently rigorous? Is there a clear statement of findings? How valuable is the research?

Study number 1

2

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6

7

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12

13

Yes

Yes

Yes

Yes

Yes

Yes

Yes

Yes

Yes

Yes

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Yes

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Yes +

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Yes +

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Yes +

Yes +

Yes +

Yes +

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Yes +

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−

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CASP, Critical Appraisal Skills Programme.

Quality appraisal 19

As discussed by Sandelowski et al., articles were not excluded on the basis of quality due to the lack of consensus in the research literature on the conception of what makes ‘good’ qualitative research. Alternatively, the final 13 articles were subjected to a process of appraisal using the Critical Appraisal Skills Programme (CASP) appraisal tool34 in order to raise awareness of their potential methodological strengths and weaknesses. The CASP tool has been developed for use by qualitative researchers in the health field in order to appraise research upon areas including rigour, credibility, and relevance of methodology and findings. Throughout this process a positive rating (or ‘Yes’ in the case of the initial two screening questions) indicates a consideration by the original authors of this point within the CASP tool, whereas a negative rating indicates a lack of evidence that this point has been considered by the researchers. A summary of the outcome of this process of quality appraisal is presented in Table 2 and discussed later within this paper. Data analysis Analysis was approached consistent with the seven phases described by Noblit and Hare.20 These steps are described in detail below. This process involved the identification of higher order themes that remain grounded within original participant accounts while providing a synthesized account of the research findings as a set. Through this process, 6

individual studies were compared and contrasted in order to explore the findings in a ‘new interpretative context’ (p. 64).20 The seven steps of Noblit and Hare’s metaethnography:20 1 Formulating the research question. 2 Deciding what is relevant – applying the inclusion/exclusion criteria within a systematic search process in order to identify the final data set. 3 Repeated reading of studies and noting of initial key concepts. 4 Examining the relationship between studies through the juxtaposing of key concepts for comparison. 5 Reciprocal translation, leading to identification of subthemes and major themes. 6 Synthesizing the translation. 7 Expressing the synthesis of translation. After first identifying a suitable research question and the final dataset of studies, each study was read several times. Throughout this process, key themes, metaphors and concepts within the findings sections of each study were noted. The relationship between the findings of the 13 studies was then determined by juxtaposing the noted key themes/ concepts from each study within a table and examining their relationships, as presented in Table 3. The process of reciprocal translation was then carried out. This involved a comparison of the key concepts of study 1 against those of study 2, creating a new translation of these findings as a whole. © 2014 Wiley Publishing Asia Pty Ltd

© 2014 Wiley Publishing Asia Pty Ltd

Using crisis point to ‘open eyes’ Trying to persuade loved one

High threshold before seeking help

Searching for understanding Stigma = fear of mental health

FEP, first-episode psychosis; GP, general practitioner; MH, mental health.

Waiting to be spoken to

Feeling ‘kept in the dark’

Crisis point = cry for help Having to convince loved one to attend

Having to face stigma and deal with diagnosis Frustration. Traumatic yet necessary.

Want information on how to manage

Unwilling to acknowledge MH problem → misattribution

Professionals aiding understanding and acting as ‘bridge’

Struggling with the ill person

Crisis point

Recalling info from media + approaching informal network

Trying to make sense

Not acknowledging illness + misattribution

4 Wong (2007)26

System barriers

Understanding aided help seeking

Reaching crisis point

Approaching community and informal support

Seeking support from informal network Help seeking at crisis point Need to communicate with loved one. Using crisis to persuade/convince.

Searching for the right support

Misattribution as normal Seeking info ++ Not knowing – feeling uncertain Stigma → delay

Noticing changes

11 Cadario et al. (2012)21

Concerns regarding services – untrusting and unknowing

Lack of knowledge and negative perceptions of services Recognizing a need for help but waiting for crisis Trying to persuade/convince loved one – dealing with anger, denial and defence Dismissed by professionals

Informal advice → delay in help seeking

Frightening

Not knowing what to do

Not recognizing as signs of illness + misattribution Normalizing behaviour

5 Tanskanen et al. (2011)25

Searching for help – desperation and helplessness

Not understanding early changes or recognizing illness Normalizing – ‘transient and normal’ Coping through desperate means Noticing changes but ‘not knowing’

10 Bergner et al. (2008)27

Beliefs about the self challenged

Professionals missing the problem

9 Franz et al. (2010)28

Understanding impacts upon relationship with loved one

Searching for meaning → misattribution

8 Gerson et al. (2009)29

Reality hit

Concerns dismissed – feeling unheard

Need to ‘prove’ illness

Input unvalued by professionals

Concern/fear yet relief at understanding

Searching for help – desperation Wanting support from others in same position

Desperate search

Convincing loved one

Fear, worry, uncertainty

Traumatic

Putting trust in informal support Crisis

Knowing something is wrong

Noticing changes but misattribution Trying to normalize changes Behaviour frames as ‘normal’

3 Tuck et al. (1997)32

Not knowing what to do

Unable to define what is wrong Trying to manage Confronting the behaviour

2 Muhlbauer (2002)31

Frustration at not knowing – needing to know Crisis point

Search among informal support

Struggle to obtain help

Search/need for understanding

Managing behaviour Realizing the need for help

Noticing changes

1 Czuchta & McCay (2001)23

TABLE 3. Initial concepts juxtaposed to be examined for their relationship

Feeling intimidated and let down by GP Validation helped Confidence increase with success and new knowledge → hope

Difficulties in doctor–patient relationship

Professionals as insensitive or unavailable

Crisis – last resort Hostility from loved one – having to convince and give advice. Reasoning with loved one. Service procedure → barriers and frustration

Seeking informal support, and support from community first

Misattribution and normalizing Use of coping strategies Not knowing

Making sense of changes

Not taken seriously FEP staff approachable versus feeling marginalized To express feelings = good and encourages help seeking

Having to chase professionals

Crisis – emotional distress ++

Missed by GP

13 McCann et al. (2012)33

Feeling intimidated

Perception of services → delay

12 Corcoran et al. (2007)22

Impact of service structure

Need to convince of illness

Support only at crisis point

Turning to informal support

Searching for help

Developing help-seeking strategies – ‘pushing for loved one’

7 McCann et al. (2011)24

Fear of services and system, barrier at point of access

‘it’s nothing’ Making sense – influence of previous perceptions Feeling distanced from MH problems, therefore not considered + misattribution Fear of stigma and shame regarding behaviours Searching for meaning

Not recognizing illness

6 Monteiro et al. (2006)30

V. A. Cairns et al.

7

Family experiences of help seeking for FEP TABLE 4. Four major themes with incorporated subthemes Theme Not knowing – trying to make sense and looking for answers

Crisis point – the cry for help

Impact upon the family member

The role of interactions in help seeking

Misattribution Normalizing Not acknowledging/ recognizing psychosis Trying to manage Not knowing A search for understanding Influence of previous knowledge/experience Use of coping strategies Struggle and frustration Confronting the behaviour Importance of culture Trying to convince loved ones Desperate search for support

Significance of crisis point High threshold before crisis Cry for help/last resort Needing to ‘prove’ illness Impact of previous experiences Fear of services Untrusting of system Traumatic yet necessary Relief at understanding System barriers→ feeling helpless and desperate

Fear, worry Traumatic Emotional impact Challenged beliefs about the self Impact of stigma Time and knowledge increasing confidence and hope Wider impact

Turning to informal network – influence upon help seeking Professionals aiding understanding and acting as ‘bridge’ Early concerns dismissed Feeling unheard → frustration Mixed experiences of services Impact of relationship with professionals

Further comparison of the key concepts of each study in turn was conducted. During this process, the researcher considered emerging themes across studies while remaining open to the potential emergence of new themes. This iterative process ensured that the ‘sense’ of the findings from each study was retained, while the interaction of these across studies was examined in order to identify groups of subthemes that were then further grouped into major themes. A synthesis of translation was then carried out in order to create a higher order concept that describes the interaction among the four major themes. This process is described by Noblit and Hare (p. 28)20 as ‘making a whole into something more than the parts alone’, and the outcome of this analysis is presented below. RESULTS Analysis identified 36 subthemes that were further refined into four major themes: (i) ‘not knowing’ – trying to make sense and looking for answers; (ii) crisis point – the cry for help; (iii) impact upon the family member; and (iv) the role of interactions. Table 4 displays these four major themes and their incorporated subthemes. Each theme is discussed in detail, supported where relevant by participants’ quotes from original studies. ‘Not knowing’ – trying to make sense and looking for answers Upon noticing changes in their loved ones, family members experienced a sense of ‘not knowing’ and 8

attempted to make sense, understand the experience and seek answers to difficult questions. This experience was characterized by a sense of desperation while trying to meet the needs of their loved ones. Family members were unable to define their early concerns, ‘we knew something was terribly wrong, we didn’t have a name for it’ (p. 1082),31 and searched for an explanation for observed changes that could be considered part of a ‘normal’ experience. This often resulted in attributions to causes other than emerging psychosis, for example, ‘typical’ teenage behaviour: ‘But you think, kids do play up, it’s that age, you know’ (p. 86).21 Cultural understandings of psychological experiences also appeared important. For example, the meaning making experience of families in Brazil appeared to be influenced by preconceptions of individuals with mental health difficulties. For these family members, such difficulties belong to people who were ‘Loucos [crazy]’ (p. 107),30 dangerous people who were not a part of their daily life and that they knew very little about. This led to an inability to relate to this stereotype and subsequently minimizing the significance of their loved ones’ experiences: ‘it’s nothing’ (p. 107).30 Family members frequently discussed their struggle to understand behaviour changes: ‘he wouldn’t say hello when he came home and would just sort of glare. I wasn’t sure if he was angry or just tired from work. I didn’t – I couldn’t understand or read his gestures’ (p. 166).23 During this period, families often sought understanding by turning to informal support networks including other family members, © 2014 Wiley Publishing Asia Pty Ltd

V. A. Cairns et al. friends and figures in their community such as priests. Family members commonly began to seek professional help for their loved ones as levels of distress intensified and included experiences such as reports of hearing voices; however, a limited understanding of mental health difficulties and available support services exacerbated feelings of not knowing. This often resulted in a ‘desperate search for someone who could suggest both an explanation and a remedy for the disturbing behaviours of their child’ (p. 121).32 Family members also often experience frustration in trying to communicate with their loved ones during this time and convince them to seek help. This impacted upon family relationships and often delayed help seeking: ‘my daughter refused to see the doctor in spite of our efforts to arrange a consultation for her. She was very angry with us, and we did not know what to do’ (p. 132).26 While ‘not knowing’, family members attempted to make sense of early observed changes in their loved ones. This included a desperate struggle to find an explanation and understand changes in their loved ones. Communication with others was often associated with frustration, and support from informal networks appeared prominent. Crisis point – the cry for help In 11 of the 13 studies reviewed (exceptions being Monteiro et al.30 and Tuck et al.32), the experience of ‘crisis point’ reflected feelings raised, approaches to coping and often initial experiences of mental health services. For many family members, delays in help seeking and the consequential experience of crisis appeared associated with limited awareness of FEP and available support. For some families, this instead appeared related to high coping thresholds, with what was considered dangerous behaviour suddenly overwhelming family coping strategies. This often resulted in emergency hospital admissions, which could be experienced by family members as traumatic and frightening.22,31 Crisis point appeared to provoke a dramatic shift in help-seeking behaviour. Family members recognized an increasing need for support for both their loved ones and themselves: ‘my putting him in the hospital was my cry for help too. I just felt I couldn’t handle it anymore, and I saw that instead of getting better, he was just getting worse. So I said that’s it’ (p. 813).29 The gaining of support during crisis offered some sense of relief for family members, although often involved mixed experiences. Even where FEP services were available, family members © 2014 Wiley Publishing Asia Pty Ltd

encountered barriers to accessing these during early attempts to seek help from front line care professionals: When it [psychosis] was first happening I mentioned it to my doctor [GP] but it wasn’t picked up . . . luckily, I had a pamphlet that someone gave me . . . and there was a phone number [FEP service] in it. I just rang it . . . within 12 hours they were on to it [care and treatment]. It was just fantastic . . . My doctor [GP] was . . . not alert enough. I won’t sit around sit around wasting time again to get a doctor’s [GPs] appointment and fit into her structure, because it was a real crisis. (p. 227)33 Furthermore, the experience at crisis point often involved feelings of fear and apprehension regarding professional support, for example, concerns regarding lack of continuity of care and medication: ‘ “We’ll try this medicine and it mightn’t work, in which case we might try four or five medicines before we get the one that works properly” and you’re thinking well how long is that down the track?’ (p. 100).21 The reaching of crisis point within the helpseeking experience was related to both limited knowledge and access to support, as well as families drawing upon personal coping resources before becoming overwhelmed. Crisis point was associated with a sharp increase in help-seeking behaviour by family members, a sense of relief at support being accessed and also concerns regarding that available. Impact upon the family member The help-seeking experience impacted upon family members in a variety of ways. This included an emotional impact and impact upon relationships, and had consequences for issues such as self-belief, confidence and hope for the future. Upon first noticing signs of change, some family members experienced fear: ‘I didn’t know what it was and I was really frightened’ (p. 160).25 The search for understanding and support evoked a sense of desperation in many and seemed related to: ‘frustration at the inability of the “so-called experts” to accurately diagnose the problem’ (p. 121).32 Upon first accessing support, family members often experienced relief, and this was also described as including high levels of expressed emotion: ‘I was in such a state, I just burst into tears’ (p. 227),33 ‘I think I broke down and cried’ (p. 167).23 In cases where this involved involuntarily admission to hospital, this was described by family members as being: ‘traumatic yet necessary’ (p. 813).29 The high 9

Family experiences of help seeking for FEP emotional content of this help-seeking experience also impacted upon other areas of family members’ lives: ‘I just couldn’t stop crying. It was horrible, I had to go to work, I’d go to work in tears, you know’ (p. 97).21 Relationships were also affected as withdrawal during the help-seeking process often created a physical and emotional distance between family member and loved one, leaving some with a sense of loss: ‘one woman prayed to understand why her son had become like a stranger’ (p. 312).22 Occasionally, behavioural changes observed while attempting to encourage loved ones to seek help also affected relationships, particularly when this included emotions such as denial and anger expressed by the loved one: ‘when you tried to talk to him he became very defensive’ (p. 161).25 Later learning about psychosis impacted positively and helped repair relationships: ‘Information made me hold her less accountable. She wasn’t a horrible, evil person, this woman I was so afraid of, she was ill’ (p. 1083).31 Stigma appeared to be an aspect of the helpseeking experience that impacted mostly upon family members who were from a minority ethnic background. Franz et al.28 suggested that it is fear of stigma, for example: ‘if they think someone has a mental illness they’re gonna just label them as crazy’ (p. 50),28 that leads to African-American families developing coping strategies that delay help seeking. These included external attribution, excusing, secrecy and denial, for example: ‘. . . I kinda ignored it completely. I just forgot about it’ (p. 51).28 Stigma was also implicit across family member accounts within mixed ethnicity samples, although the implications of this upon the help-seeking experience were less evident: ‘the S word – schizophrenia – I’m going to deal with it for the rest of my life’ (p. 313).23 Finally, some family members who were parents experienced feelings of failure during the helpseeking process and challenged their beliefs in their own parenting skills: ‘I know that this is not my fault. But the truth is, I feel like a failure at the most important, one of the most important things of my life’ (p. 123).32 For others, the development of an assertive approach to help seeking impacted positively upon their sense of self-confidence and hope regarding accessing future support.24 The experience of seeking help for FEP on behalf of a loved one had a significant emotional impact upon family members, including high levels of distress and sometimes a sense of trauma. The helpseeking experience also impacted upon relationships, with both others and the self, often negatively, but at times (often later in the process) positively. 10

The role of interactions in help seeking The role of interactions was prevalent in 12 of the 13 studies (Franz et al.28 as exception), often acting as a mediating factor to effective help seeking and the impact upon the family member. Upon first noticing changes and attempting to find a non-threatening explanation, family members often turned to informal sources of support. These both aided the help-seeking process, and at times created barriers. Helpful interactions included friends with experience of the mental health field: ‘I found my good friend and told her my daughter’s problem. She said she might have some mental problems. She asked me to find the social worker. I trusted her very much’ (p. 131).26 In other cases, having fears normalized by those in the informal support network contributed to delays in seeking help: If I talked to people they would say “he sounds like a normal teenager to me.” You do sort of wonder . . . you wonder whether this is what they mean by ‘stroppy obnoxious teenagers’ and so you put it down to that. (p. 160)25 Initial contact with professionals was often sought within a context of desperation and is linked to both positive and negative experiences. Where individuals were of school age, family members described school social workers (connected to FEP services) as a ‘bridge’ (p. 131)26 that facilitated communication between them and their children’s schools. In some cases of seeking help on behalf of an adult relative, GPs were identified as resourceful, encouraging and validating.24 Some family members, however, felt dismissed and thus a need to convince health-care professionals that their loved ones were in need of help: ‘so I brought him along to our local GP and told her what I felt was really wrong with him and she kind of dismissed it and said “no, I think he just need to sleep” ’ (p. 163).25 Other unhelpful interactions experienced while seeking help included a perceived inability of professionals to engage with this topic, poor communication from services, unreassuringly non-committal advice and an inability at this point to provide a definite diagnosis. Furthermore, many family members identified interpersonal issues as creating barriers to help seeking: ‘our GP (has) done nothing . . . He should be more understanding, more compassionate, and try to work out with the family’ (p. 158).24 Such experiences often left family members feeling unheard and had increased feelings of helplessness and desperation.23,24,27,31–33 © 2014 Wiley Publishing Asia Pty Ltd

V. A. Cairns et al. FIGURE 2. The higher order concept ‘The Family Member Experience of Seeking Help for a Loved One Experiencing First-Episode Psychosis’.

‘Not knowing’ – Trying to make sense and looking for answers

The role of interacons in help seeking

Crisis point – The cry for help

Impact upon the family member

Upon reaching crisis point and entering services, family members had mixed experiences regarding interactions with mental health-care professionals. Family members reflecting upon interactions with clinicians in specialist FEP services described feeling marginalized from the care planning process once they had successfully sought help from the service: ‘my experience with the psychiatrist . . . is that I felt really marginal to the whole process’ (p. 228).33 This reflects frequent feelings of being unheard and provided with little information described across a number of studies.22,29,31,33 Alternatively, family members also experienced a range of professionals as compassionate and understanding regarding their loved ones’ experiences.21,29,33 Furthermore, clinicians from FEP services were also recognized as providing an additional level of support to the family member during the help-seeking process.33 Such supportive interactions helped manage the emotional impact of the help-seeking experience (as discussed in the theme ‘impact upon the family member’): ‘at least we can talk and express our feelings and you feel lighter after that’ (p. 228).33 When interacting with professionals, family members also often developed strategies to aid future help-seeking attempts. These included gaining knowledge about mental health issues and services and learning to: ‘play the system’ (p. 160),24 an approach involving highlighting certain difficulties in order to elicit care and support. Finally, family members described a supportive experience from interacting with other families in the same position as themselves. This was valued for the empathic understanding provided by others with a shared sense of distress, something recognized as only possible from those who have shared © 2014 Wiley Publishing Asia Pty Ltd

the experience of caring for someone experiencing FEP: ‘You have to live in it and it has to be your kids before you completely understand’ (p. 123).32 Interactions had a mediating effect upon attempts to seek help, ways in which this was approached and the impact upon the family member. This incorporated experiences with informal support networks, professionals and interactions with other families. Help seeking was facilitated where these interactions identified the need for help and involved clear communication and support from professionals, whereas interactions had a negative influence upon the process where others’ attempts to normalize subsequently minimized the significance, and/or became dismissing of difficulties. The synthesis of translation The four themes mentioned have been further examined in order to explore the interaction between them in the next phase of analysis: the synthesis of translation.20 This has generated the higher order concept of ‘The family member experience of seeking help for a loved one experiencing firstepisode psychosis’, encompassing all four themes and their interaction. This is represented in Figure 2 and described below. The role of interactions is embedded within all aspects of the help-seeking experience. Similarly, all aspects of the experience, including interactions encountered throughout the help-seeking process, contribute to the impact of the help-seeking experience upon the family member. While experiencing a period of ‘not knowing’ and looking for answers upon first noticing signs of change in their loved ones, the family members attempted to make sense 11

Family experiences of help seeking for FEP of these within the context of normal development, and interactions with those within informal support networks appeared prominent. This was often characterized by a desperate struggle to make sense of their experiences and had a significant emotional and practical impact upon the family member. As the situation finally reached crisis point, professional support was accessed and understanding often increased. Throughout this process, the role of interactions with health-care professionals was more prominent and had the potential to mediate the impact of the entire experience upon the family member. Furthermore, interactions within and between families were also of significance, often playing a role in the impact of the entire experience, upon the family members seeking help. Through the process of synthesizing this translation, the complex interaction among the four identified themes is highlighted. The reader is encouraged to view the higher order concept as an overall interpretation of a family member’s experience of seeking help for a loved one experiencing FEP, rather than considering any of the themes solely in isolation.

DISCUSSION This meta-synthesis aimed to explore the lived experience of family members seeking help for a loved one experiencing FEP. The higher order concept, ‘the family member experience of seeking help for a loved one experiencing first-episode psychosis’, captures the interaction among the four major themes, and in so doing extends the level of interpretation offered by any single study in isolation. The current review demonstrates that with regard to initially searching for explanations within the context of normality, family members experience the early help-seeking process in a manner similar to that of individuals themselves.5 Previous studies have highlighted the influence of familial and close network interactions upon the help-seeking experience,35 and the current research additionally highlights the importance of interactions with professionals and services. The current findings suggest a potentially interesting hypothesis regarding previous research that involved the provision of positive, normalizing and non-threatening information about FEP through information campaigns (e.g. the TIPS8,9). The educational information campaigns (providing information about the early warning signs of psychosis targeted to schools, general public and GPs) run by the TIPS were also 12

accompanied by clear information about the process of seeking help from ‘easy access detection teams’ (DTs), which were accessible during this study, to those concerned about a loved one.8,9 As family members encountered such information, this could be considered to be early interactions with FEP services. The current research suggests that, with their mediating role upon the helpseeking experience, such interactions may increase the family member’s ability to assimilate newly acquired information about psychosis within their personal understanding of ‘normal’ development, subsequently increasing their ability to consider FEP as a potential explanation for their loved ones’ difficulties. Furthermore, positive early interactions (such as those potentially encountered when family members are provided with non-threatening and clear information about FEP) may also reduce the level of emotional distress often reported by family members when struggling to find clear information while seeking help. Therefore, interactions provided by methods such as information campaigns could be considered to have the potential to mediate the impact of the experience upon the family member, potentially encouraging sooner help seeking and reducing the impact of, or potential escalation to, crisis point. In summary, the current review provides a novel perspective by suggesting that the effectiveness reported by previous studies such as TIPS,8,9 in using information campaigns (and DTs) to reduce DUP, could be potentially related not only to the increased awareness of psychosis provided by such methods, but also, considering the mediating role of interactions highlighted within the synthesis of translation, potentially to the positive early interactions between family members and FEP services that this approach provides. The current research also offers a perspective upon the varying previous findings relating to family involvement and length of DUP across groups of differing ethnicities.15,16 The current research has compared the accounts of family members from various ethnic minority samples (e.g. Corcoran et al.22 and Franz et al.28) and identified consistent fears regarding stigma across these various groups. This supports the hypothesis made by Compton et al.16 that fear of stigma in ethnic minority groups may serve as a barrier to help seeking and encourage families to employ their own protective strategies before seeking help. It is important to highlight, however, that one of the key studies within this review, which significantly contributed to these reflections upon the role of stigma,28 focused predominantly upon this issue © 2014 Wiley Publishing Asia Pty Ltd

V. A. Cairns et al. for participants from an African-American population. As such, the previous discussion of this issue could reflect an overrepresentation of the importance of stigma for this population, given that the participants in this study were asked to focus explicitly upon the impact of this issue upon delayed help seeking. These findings may offer a qualitative perspective to previous quantitative findings that ethnic minority populations are more likely to rely upon family support for mental health difficulties36 and experience an increased sense of shame relating to stigma.37 Clinical implications The need for information that raises awareness of psychosis in a non-threatening and accessible manner has been previously identified through quantitative research8,9 and recognized within international clinical practice guidelines for FEP.38–40 This meta-synthesis further elucidates how such information may be especially vital during the period within which family members are searching to understand their loved ones’ experiences, in order that psychosis may be considered as a nonthreatening potential explanation for their loved ones’ experiences. This highlights a need for all members of the community who may serve as first point of contact, for example, GPs, teachers, local community leaders, to receive training on the very early warning signs of psychosis. This would not only ensure successful signposting of family members to appropriate sources of help, but also facilitate supportive and validating interactions, recognized as invaluable due to the potential mediating effect of such interactions upon the help-seeking process. Further research may wish to focus upon evaluating the impact of such training upon family members’ experiences of early interactions with professionals who serve as this first point of contact during the help-seeking process and the any subsequent impact upon referral pathways to FEP services. Qualitative exploration may wish to focus explicitly upon family members’ experiences of early interactions with professionals prior to accessing a specialist service. Currently within the research literature on helpseeking behaviour, there appears to be an implicit assumption that seeking help from health professionals is always a necessary final outcome when encountering FEP, and therefore these clinical implications are based upon research with clinical samples. Alternatively, future research may also wish to study the experiences of family members © 2014 Wiley Publishing Asia Pty Ltd

supporting loved ones experiencing FEP who have not sought help from professional mental health services, although it is acknowledged that this population may be difficult to access. Limitations of the meta-synthesis It is recognized that the cultural and geographical diversity represented by the reviewed articles potentially reflects diverse help-seeking experiences, as services for FEP vary in their design between different contexts. It is important to be mindful of the potential to limit the applicability of the clinical implications discussed above to any one clinical service context. However, the consistency of previous findings regarding barriers to help seeking across various geographical locations, for example, the USA,6 the UK,4 Australia41 and Japan,42 supports the synthesizing of data representing diverse settings. Furthermore, the nature of the current findings, relating predominantly to relational, as opposed to service-specific features of the helpseeking experience, suggests the relevance of these across service contexts. Upon the application of the CASP quality appraisal tool, all studies received an overall majority positive rating, suggesting that all employed appropriate design and methodology and demonstrated a rigorous and transparent approach to analysis and presentation of findings. Discussions relating to ethical considerations and the impact of the researcher upon the participants were areas that were most often found lacking during appraisal, with the exception of Corcoran et al.,22 Gerson et al.29 and Muhlbauer.31 The authors acknowledge the limitation of this process having been conducted by a single researcher (although audited by the second researcher). Finally, the inclusion of original research articles carried out with varying methodologies that draw upon differing epistemological stances, for example, interpretative phenomenological analysis and grounded theory, may be considered a potential limitation of this review. However, such concerns are also queried for the value of being as inclusive as possible when selecting studies for review, as well as the potential to enhance the value of findings when studies of differing epistemological stances are reviewed alongside one another.19,43

CONCLUSION This meta-synthesis provides an insight into family member experiences of seeking help for FEP on 13

Family experiences of help seeking for FEP behalf of a loved one. The synthesis of translation outlines an interpretation of this process based upon four themes identified across 13 original qualitative studies in this area. The four themes, namely ‘Not knowing’ – trying to make sense and looking for answers, crisis point – the cry for help, the impact upon the family member, and the role of interactions in help seeking, interact in such a way that interactions with others have been identified as a potential mediating factor upon all aspects of the help-seeking experience. The findings highlight implications around training for services attempting to meet the needs of individuals with FEP and their families. Future suggested research includes developing and evaluating training to members of the community who serve as first points of contact for family members, and understanding the experiences of those who have sought other non-servicerelated sources of help in response to FEP.

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