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

doi:10.1111/eip.12177

Original Article Seeking help for first-episode psychosis: a family narrative Charlotte Connor,1,2,3 Sheila Greenfield,4 Helen Lester,4,† Sunita Channa,1 Colin Palmer,1 Clare Barker,1 Anna Lavis5 and Max Birchwood3 Abstract

1 Birmingham and Solihull Mental Health, NHS Trust Research and Development Unit and 3Division of Health and Wellbeing, Warwick Medical School, University of Warwick and 4Primary Care Clinical Sciences, School of Health and Population Sciences, and 5School of Life and Population Sciences, University of Birmingham, Birmingham, and 2School of Psychology, University of Birmingham, Coventry, UK †

Sadly Professor Helen Lester died during the production of this paper. Corresponding author: Dr Charlotte Connor, Birmingham & Solihull Mental Health Foundation Trust, 66-68 Hagley Road, Edgbaston, Birmingham B16 8PF, UK. Email: [email protected] Received 18 March 2014; accepted 22 June 2014

Aim: Delayed help-seeking can have serious consequences for young people with first-episode psychosis (FEP), in terms of treatment response and outcome. Young people’s narratives about help-seeking are important to understand why delays occur; however, as the majority of helpseeking is initiated by family members, through a general practitioner (GP), family narratives are also of interest. The aim of this study was to explore help-seeking for FEP, including first contact with a GP. Method: A semistructured interview was developed using a topic guide. Framework analysis was used to analyse data and a deductive qualitative method for applied research. The study was set in Birmingham, UK. Participants were interviewed separately by researchers. Joint coding and identification of 14 complete family dyads was then explored for emerging patterns within the family context.

behaviour included withdrawal, normalization, stigma, fear and guilt; poor knowledge of availability, and means of access to mental health services was also important. Helpseeking was usually instigated by a family member through a GP, although this was not the case for two of our families, and while contact with GP was generally described as a positive experience for several families, it was hindered by poor communication and lack of engagement. Conclusion: Families play a key role in facilitating help-seeking for FEP, but attempts are often derailed by complex family responses to illness. Public mental health interventions should focus on increasing community awareness of psychosis and improving access and alternative routes to mental health services. However, improvements will have little impact unless primary care and other help-seeking sources engage in open and easy dialogue with the families and young people trying to access their specialist services.

Results: Family responses to FEP that had an impact on help-seeking

Key words: carers, families, help-seeking delays, psychosis, young people.

HOW THIS FITS IN

INTRODUCTION

Family attitudes and beliefs play a key role in the help-seeking behaviour of young people with firstepisode psychosis (FEP). Recent studies have begun to explore the perspectives of the whole family system, but relatively few consider the whole family perspective. This study is one of the first to explore the experience of 14 complete family dyads.

Duration of untreated psychosis (DUP – the time period between onset of FEP and receiving antipsychotic medication), and its impact on treatment response and outcome, has been the focus of international research for more than 20 years.1 Reduction of DUP is now an international imperative.2 However, DUP is not a unitary variable and consists

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1

Help-seeking for first-episode psychosis of several component delays,3 including delays in getting a mental health referral and delays within mental health services.4 This is in keeping with Canadian research5 and our previous observations in the United Kingdom.3 In Birmingham, UK, delays within mental health services were of most significance in the care pathways of those with DUP greater than 12 months;4 whereby first mental health contact with an adult community mental health team or child and adolescent service, resulted in longer mental health service delays, longer overall DUP and delayed access to early intervention in psychosis (EIP) teams. Help-seeking delays, however, were also significant in the care pathways of those with long DUP. These delays may prove more difficult to influence than structural delays, due to the idiosyncratic nature of individual behaviour, particularly in relation to mental health issues, which may be beset by stigma and poor mental health literacy.6–10 Public mental health interventions to reduce help-seeking delays, therefore, require a comprehensive understanding of how a young person responds to the experience of FEP. However, while a young person’s narrative is important, we must not forget that their FEP is commonly embedded within a family system, whereby responses from all family members are interrelated and of significance;11 indeed family attitudes and beliefs, play a key role in the nature and timing of help-seeking behaviour for those with mental health problems.12 Such findings highlight the importance of understanding the whole family narrative when exploring help-seeking behaviour for FEP. While recent studies have now begun to explore the perspectives of the whole family system in relation to FEP,13 there are relatively few which explore the perspectives of participants from within the same family. A recent study examined the help-seeking of young people (under the age of 18) with FEP and their primary caregivers and concluded that a general lack of knowledge and awareness of mental illness was the key barrier to families seeking help early.14 Indeed, behavioural changes and symptoms have to be recognized by families as problematic and warranting help before any help-seeking is to occur;15 misattribution16 and normalization of symptoms, due to lack of knowledge and awareness, often obscuring recognition and resulting in delayed help-seeking.13 In the United Kingdom, it is general practitioners (GPs) who are the ‘gatekeepers’ to mental health services. Seeking help for FEP from a GP is regarded as highly beneficial, both in terms of outcomes17,18 and reduction in the length of time young people experience their symptoms.19 Nevertheless, while 2

30–40% of those with FEP contact their GP soon after experiencing their first symptoms, 50% of them delay making an appointment with their GP until some later point during their illness.20 The aims of this research were: 1 To examine the help-seeking narratives of families experiencing FEP. 2 To explore families experience of first helpseeking contact with their GP when help-seeking for FEP. METHOD Sampling Three hundred forty-three participants were originally recruited into the National EDEN study (August 2005–June 2009), a Department of Health(DOH) funded multi-site evaluation of differently configured EIP services in the United Kingdom.21 All participants met the International Statistical Classification of Diseases and Related Health Problems 10th Revision (ICD-10) Version for 2010 criteria for a schizophrenia-spectrum disorder and received care from Birmingham EIP service, a specialized service for young people (aged 14–35) in Birmingham. To develop a greater understanding of carepathway delays, our prescribed selection criteria required participant families to have experienced excessive DUP. Forty-four participants from the National EDEN study had experienced DUP greater than 12 months. Two young people from this cohort had since died and four were hospitalized, which left 38 families who were available to contact. Twenty-four of these families were unable or unwilling to participate (see Fig. 1), including 10 families, one of whom were unavailable during the study period October 2010–2011. This left 14 complete ‘family’ dyads (client + carer) who were consented. Design Semistructured interviews were conducted by two trained researchers, in participants’ own homes or another suitable setting, previously agreed with the interviewees. Young people and carers were interviewed separately and each took approximately 1 h to complete. All interviews were tape-recorded and fully transcribed. Measures Interview schedule All interviews were conducted using a topic guide, informed by our previous exploration of the care © 2014 Wiley Publishing Asia Pty Ltd

C. Connor et al. FIGURE 1. Family dyad selection. DUP, duration of untreated psychosis. 44 young people contacted by carecordinators in first instance

Idenfied 44 young people with DUP >12 months

38 young people agreed to parcipate 2 people had died 4 were in hospital

7 young people refused to parcipate 1 young person away at university

14 complete young person/carer dyads secured (10 remaining young people were not included because they, or their carers, were unavailable between October 2010 and March 011 )

1 carer refused 1 young person did not have carer 1 young person did not speak English 1 young person was pregnant

38 young people successfully contacted by researchers

1 young person was undecided 1 young person did not turn up to interview

pathways of National EDEN cohort,21 which revealed that many young people experienced a variety of help-seeking barriers to care en-route to EIP teams. We were keen to explore these barriers in more depth using the following questions: 1 Why did young people and their carers not seek help? 2 From whom did they first seek help? 3 Why did they choose to seek help from a particular person/professional? 4 Why did they choose to seek help at a particular time? 5 What happened when they first went to their GP? 6 Did they feel that their GP had listened to them? 7 What else would they have liked from their GP? Analysis Framework analysis, developed by the National Centre for Social Research in the 1980s22 was used to analyse the interview transcripts. This is a well-used deductive qualitative method designed for research, which is applied or policy driven, and is ideally suited to studies with preset aims and objectives.23 Following the conceptual guidelines associated with framework analysis, four qualitatively trained researchers analysed transcripts using NVIVO 7 (NVivo qualitative data analysis software; QSR International Pty Ltd. Version 8, 2008), adhering to the prescribed five-step process associated with the methodology. Although interviews were all conducted individually, transcripts were grouped into 14 family dyads for analysis within the family context. Following familiarization with transcripts of the data to identify key ideas and emergent themes, the researchers developed a thematic framework and indexed the significant themes. © 2014 Wiley Publishing Asia Pty Ltd

TABLE 1. Sociodemographic comparison of young people and original National EDEN sample Young people Birmingham National (n = 14) EDEN sample (n = 343) Age, mean (years) Gender (%) Female Male Ethnicity (%) South Asian White Black Mixed heritage Other Living circumstances (%) With family Alone Other

25.6

21.9

4 (29) 10 (71)

92 (27) 251 (73)

7 (50) 4 (29) 3 (21) – –

125 (36) 135 (39) 59 (17) 21 (6) 3 (1)

11 (79) 3 (21) –

271 (79) 33 (10) 39 (11)

Charts, consisting of headings and subheadings associated with these themes were then established, followed by a final mapping and interpretation of the significant concepts and associations. Collection and analysis occurred concurrently and disconfirming evidence was actively sought by researchers throughout the analysis to validate the narratives. No researchers were involved in delivering clinical care. RESULTS Table 1 shows characteristics of participants in comparison with the National EDEN sample. While the young people in our study were slightly older (mean age of 25.6 years) and predominantly of Asian Pakistani heritage, they were representative of 3

Help-seeking for first-episode psychosis TABLE 2. Clients and their carers Family number 1 2 3 4 5 6 7 8 9 10 11 12 13 14

Client gender and ethnicity

Carer

Age at onset of psychosis

Age at time of interview

Male, black African Male, Asian Pakistani Female, Asian Pakistani Male, black African Male, Asian Pakistani Male, white British Female, white British Male, Asian Pakistani Male, Asian Pakistani Female, white British Male, Asian Pakistani Male, white British Female, Asian Pakistani Male, black Caribbean

Sister Mother Brother Mother Aunt Mother Father Father Mother Mother Sister-in-law Brother Sister Mother

21 15 20 21 19 14 24 14 19 21 18 15 18 22

26 22 27 27 23 20 30 21 25 39 25 23 24 29

young people typically accepted into EIP teams; predominantly male (71.4%), early age of onset (42.8%) and living with their family/parents; 42.8% of carers were mothers (Table 2), with help-seeking was initiated by 9 (64.2%) carers. The median DUP for the young people interviewed was 711 days, with median help-seeking delays of 380 days. Help-seeking narratives of families experiencing FEP The significant themes that emerged from the transcripts were ‘family response to illness’ and ‘lack of knowledge’. Family responses included social and emotional withdrawal of the young person, collective normalization of symptoms, fear of stigma, fear of loss, and parental guilt. Symptom severity emerged as the most common help-seeking trigger, many of our families only seeking help following a perceptible decrease in functioning, often associated with a crisis of some kind. Help was most often sought via a GP, and while this was viewed as a positive experience for some families, poor engagement and communication difficulties were reported by others. These help-seeking themes are now discussed in detail, using selected quotes from transcripts to reflect the range of issues that emerged. FAMILY RESPONSE TO ILLNESS Withdrawal: ‘He wouldn’t talk to anyone . . .’ The majority of the young people we talked to (n = 12) described how they had become increas4

ingly withdrawn from family and social networks, physically and emotionally removing themselves from social interaction. The young man from family 2, was confused and unable to express what was happening to him and, because of this had hidden himself away rather than seek help: I didn’t tell the doctor or anyone cos I didn’t know what was going on . . . I never went to see absolutely anyone, I just kept it to myself cos I just didn’t know what it was or what I was doing. (Male Asian Pakistani, aged 15 at onset) His behaviour meant an absence of interaction between himself and his family. His mother, frustrated at his refusal to speak with her, had confided to her sister, resulting in a hidden family dialogue about her son, but not with him, enabling her to relieve herself of worries, but serving to delay any active help-seeking from taking place: . . . no, because he wouldn’t let anyone know what he was feeling, he doesn’t want to. I would tell my sister personally, he doesn’t feel well, I’m worried about him, this and that, but I wouldn’t mention it to (him), that my sister knows, because he doesn’t like anybody to know he’s got a problem. (Mother) The young man from family 9, aged 19 at onset, described how, during the early phase of his illness, he had also found it increasingly difficult to talk to people, becoming progressively more and more removed from social interaction: It was hard to get into conversation, like I can’t, what(s) the word, consistently get into conversation because I kept on muttering and forgetting what I was saying or I wasn’t concentrating on the conversation with people and just used to doze off © 2014 Wiley Publishing Asia Pty Ltd

C. Connor et al. or blank out. (Male Asian Pakistani, aged 19 at onset) Again, his withdrawal, like the previous family, had been noticed by his mother, who could see her son detaching from family life, making any interaction between them increasingly difficult and unlikely: . . . he never used to eat or drink. He used to just sit upstairs in his room on his own. When I called him to come and eat, he wouldn’t come. Everyone in the family would be watching TV downstairs, he wouldn’t talk to anyone. He wouldn’t talk to his sister, his younger brother or me. He never used to shower for days. He would always leave his door locked. He wouldn’t let me clean his room or change the bed clothes. I don’t [know] what happened to him. (Mother)

Normalization: ‘she’s going through a teenage phase . . .’ Many families expressed the need for family life to remain unchanged. This drive for self-sufficiency is well-documented as playing a key role in delayed help-seeking.24 Five families told us how they recalled rationalizing the behavioural changes they were seeing as a way of keeping things ‘normal’ and making them feel they were coping without outside intervention; inability to do so, regarded as an admission of defeat and indicator of the seriousness of the situation. The young woman in family 3 spoke of how she had normalized her behaviour by making a judgment about the severity of her symptoms, convincing herself that she did not require help because she was not trying to harm herself: . . . and I wasn’t doing anything overboard, I wasn’t like, you know, jumping into the road or anything, you know what I mean, so I didn’t think that I needed that sort of help. (Female Asian Pakistani, aged 20 at onset) Not only was she normalizing her behaviour, but her family, reluctant for her to take any medication, were also collectively attributing her symptoms to an ‘adolescent phase’, which would pass. An unspoken family collusion of normality, therefore, had ensued within which any help-seeking was unlikely to occur: . . . we didn’t want her to go take any sort of medication like, you know, antidepressants or drugs, you know, we just, at the time, we thought maybe she’s just going through a phase or something. . . . She’s going through a teenage phase. (Brother) © 2014 Wiley Publishing Asia Pty Ltd

We just thought maybe at that time because she was young we didn’t want to sort of jump the gun and you know go to the GP straight away, maybe if she just works her way out of it herself, you know with family support that might be a good thing. (Brother) Likewise, in family 4, the young man had not regarded his increasingly bizarre behaviour as anything to worry about: . . . I just thought everything was normal and then, even though I had thoughts, been thinking I’m losing my mind, or going insane, it didn’t really click . . . I didn’t really see that there was a problem with me at the time. (Male black Caribbean, aged 21 at onset) His lack of concern alongside his mother’s normalization of his behaviour as part of adolescence meaning that no help was sought: So he’d come round at 2 o’clock in the morning and we’d be chatting at 2, but I think one of the things I noticed [was] he was spending an awful lot of time on the internet reading about ancient cultures and music and religion [but] I just took it as normal sort of browsing. . . . He’d started to say things like hearing words in the record, in the song, and I said well, no, it doesn’t go like that, it goes like this, but he said, no, they’re saying this. So there was [sic] those little things. . . . [but] I didn’t sort of make much of that at the time. (Mother) An increasing drive for independence from family is an important aspect of adolescence. This was observed in the young man from family 9 who wanted to be able to cope with things on his own: . . . I don’t know why I didn’t go to the GP myself because . . . I, I don’t know really why, cos I thought that it wasn’t a problem, thought that I could deal with it and handle it myself. (Male Asian Pakistani, aged 19 at onset) This meant that any of his mother’s attempts to speak with him were met with anger and frustration. This created a family atmosphere of ‘treading on eggshells’ around him, preventing any possibility of an open family dialogue, and making her feel like she was being over-anxious: . . . he would not listen to me and just say that “what’s wrong with you, I am fine, why are you constantly nagging me. You are always after me”. (Mother) In response to this difficulty with communication, and in order to help make some sense of what was 5

Help-seeking for first-episode psychosis happening, his mother had begun to blame his drug use for his behaviour: Yeh, it could be mental health, but in my feeling it was due to the drugs he was having that have made him change. (Mother) This provided her with a ‘controllable’ explanation for the difficulties the family were experiencing, consoling herself that if drug use was to blame for her son’s illness, it was his choice, and therefore, under his control. Research suggests that the families of those with psychosis and comorbidi substance abuse are more likely to attribute their illness to internal, personal and controllable factors compared with those without substance abuse whose illness is perceived to be out of their control.25 But it is not only normalization within family systems which impact on help-seeking. The 14 year old young man from family 6, was referred to a community mental team who had dismissed his symptoms as a teenage phase: And I told him everything that happened, he just completely dismissed it, eh, you are absolutely fine, it’s probably your hormones. . . . I told him I was sad all the time, and, I was a teenager, he said nothing unusual and he just dismissed everything I said and we walked out and my Mom was really happy saying “just a teenager’ and I remember feeling really sad, that’s not good enough no-one believes me kind of thing. (Male white British, aged 14 at onset) Fear of stigma: ‘you know how people in the community are’ Stigma can play a significant role in delayed helpseeking.13 This was particularly reflected in our interviews with Asian Pakistani families who felt stigmatized by their families and communities. Family 9 was an Asian Pakistani man and his Mother: I didn’t speak to anybody cos I didn’t want anybody thinking that I was mentally ill or that I had a jinn in me or evil spirit . . . in this Asian area that I live in they do believe in evil spirits and the devil or whatever. Yeah I didn’t want word spreading . . . I just didn’t want to be described as mentally ill, that’s the reason why, and I said don’t want to be described as mentally ill. (Male Asian Pakistani, aged 19 at onset) Understandably, his mother was extremely sensitive to the way in which her son may be judged by the community if it emerged that he was experiencing mental health issues: 6

. . . well, we people tend to hide things don’t we? . . . people will start saying “oh there is something wrong with her son and he is having drugs” . . . so I couldn’t really speak to anyone since they would start talking about him. It was very difficult. Because my son was good and if I spoke to anyone they would just start talking about him and say things about him. That is what I felt. You know how the people in the community are. (Mother) Cultural beliefs about spirit possession and black magic meant that two of our families had also sought help from faith healers. The sister in family 13 told us of about how such beliefs are ingrained in family and community life: . . . in the Asian community, what they’re like, they were saying it was black magic and someone’s done something on her and she went to Pakistan and that’s where it first happened so it must have been that someone’s done black magic on her. Over there, black magic is a big thing, you practically, you can get black magic done on someone and get a guarantee that it’s practically going to work and all sorts. I know in the Western world it sounds ridiculous, I do believe in black magic but not to the extent that they [family] do. (Sister) Fear of loss and parental guilt: ‘. . . he would not be the same person ever, ever again’ Fear of loss and guilt emerged as important helpseeking barriers for the carers we interviewed; factors recognized as help-seeking barriers for those who care for young people with mental health problems.26 Family 6 consisted of a young man, aged 14 at onset, whereby the onus of responsibility for help-seeking had rested with his mother; helpseeking had not occurred, however, because of her fears of losing him to a mental illness, that he would ‘disappear’ and never be the same again. She had also been worried that contact with mental health services would result in him being taken away: I was just petrified he would just go, I was just petrified he would not be the same person ever, ever again. I thought once he’s in there he’d never come out and I could not have somebody, some doctors, come here and take him away, I couldn’t do it. (Mother of male white British aged 14 at onset) This echoes existing research highlighting the prospective guilt of carers at the thought of their child being institutionalized which prevents carers from engaging with mental health professionals.27 © 2014 Wiley Publishing Asia Pty Ltd

C. Connor et al. Retrospective guilt was also an issue for seven of our carers who attributed the cause of their child’s mental health problems to something they, themselves, had done; this guilt appeared to serve two purposes, giving them a reason for why things were happening, but operating as a reason not to seek professional help: . . . angry, angry, erm frightened to death . . . I felt the guilt that you’re bound to feel, that you feel you should have, you know what I mean, and I felt the guilt that, it all stems from childhood and it isn’t supposed to stem from childhood. . . . I made mistakes in my life I presume that they, they had their effects as well. It was no consolation that my son was ok you know . . . so I was and am still, erm . . . feeling guilty. (White father of daughter aged 24 at onset)

Lack of knowledge: ‘I thought the GP could only help me with my body only, not like mentally’ The majority of the families (n = 10) eventually went to their GP for help. In the United Kingdom, GPs are commonly regarded as the ‘gatekeepers’ to mental health services, so this was not unexpected. However, several families revealed that they were unsure as to whether a GP would be able to help. Family 1 was a young black man and his sister: To be honest I didn’t know the GP could help me. I thought the GP could only help with my body only, not like mentally. (Male black African, aged 21 at onset) Who assumes responsibility for seeking help within the family system is often an issue of age, family expectations that parents or older siblings should ‘know when things are wrong’, ‘know what to do’ and be able to ‘make things right’. In 12 out of the 14 families we interviewed, it was carers who instigated help-seeking. Assuming responsibility for help-seeking, however, without adequate knowledge of where to get help lays a heavy burden on carers. The older sister from family 1 felt that she needed to assume responsibility for her brother, but told us how she did not know how; family discussions with her husband serving to compound this confusion: He (husband) just say to me, like, for me, obviously, to really know what’s going on with (him) . . . he has to tell me, otherwise, even if I look for help for him, they (services) won’t provide © 2014 Wiley Publishing Asia Pty Ltd

anything, because really it’s him and even if he’s got those services they can’t speak to me without his consent. (Sister) Family 3, was a young Asian Pakistani woman and her brother. Her symptoms had emerged at the age of 20. At the time of onset, she had been at college, and while aware of counselling services, had not known how to access them: I didn’t, erm, when I was in college, right, I thought about seeing a counsellor there, but it was such a small service I didn’t know whether you just turn up or whether people go there or not. And erm, I wasn’t aware to be honest I didn’t know about these services [EIS] . . . And was uncertain as to whether people of her age were suitable: . . . I thought people my age didn’t go to [EIS services]. (Female Asian Pakistani, aged 20 at onset)

Triggers for help-seeking: ‘Mom, I know I need help’ Much research has documented the important role that carers play in instigating help-seeking.6 Our findings support this, with help-seeking in 12 of the families we interviewed initiated by carers. Families tolerate low-level prodromal or negative symptoms for quite some time before seeking any help;28 ‘the most common precipitant [of help-seeking] . . . the presence or exacerbation of psychotic symptoms, followed by suicidal ideation’. Indeed, in our families, help-seeking was only initiated following collective appraisal of an event or behaviour as ‘critical’. Seven families recalled the way in which this collective appraisal had occurred. Family 6, was a young male white British and his mother: It was erm, one time when I came back from school and waited at the bus stop with a friend of mine and by the time, like we was talking and stuff with my friend and by the time I thought ah l should actually catch the bus now, like 10 hours had gone by. But to me it felt like 30 minutes so huge time lapse and I didn’t realise what had happened. Then I came home at like half one in the morning in a taxi completely oblivious to where I’d been in the past 10 hours so that’s when she said right we need to get you help cos that’s not right. So she went straight to the GP. (Male white British, aged 20) This incident, and the family’s response to it, while traumatic for the young man and his mother, 7

Help-seeking for first-episode psychosis had resulted in the beginning of open family dialogue and a joint family decision to seek help: . . . I just could not get my head round it. I said . . . I think you need help. He said “Mom, I know I need help”. So that was it, I rushed him round the GP and we told the GP everything and she said “oh we need to get him some help quite quickly”. (Mother) Collective family awareness of increasingly bizarre behaviours, threatening behaviour and suicidal ideation were often reasons that families eventually sought help. The young man from family 14 and his mother talked of how this had occurred for them: . . . I did say something really bad to her actually, I said that I was gonna burn her flat down, I swore at the time and her little daughter was there and she said you can’t swear in front of a child and I was, like, sorry . . . just carried on talking and I was gonna, like, burn your house down, cos I was angry at her. But I didn’t have a good reason to be angry at her but because of the paranoid thoughts I’d been having . . . I remember she looked quite worried. Her neighbour knocked on the door cos obviously he wanted to know what was going on and she says and then he came in and she says you’ve probably gotta leave now and I was like OK and then I just mentioned about killing myself and the neighbour was just like stop talking nonsense and I just left. That same night I walked home all the way . . . by the time I got there my father and my mother was there and my uncle and I think my mom said my auntie was here as well. . . . (Male black Caribbean, aged 21 at onset) He said the night before the grim reaper had visited him and poked him in his chest, he said he can still feel the finger marks on his chest so I thought I’ve got to get him to see somebody. (Mother) The aunt from family 5 was finally alerted to the seriousness of the situation when her nephew had begun to self-harm: He started carving her name, you know, on his hand. (Aunt) And the brother from family 3, described how the family, previously normalizing his sister’s behaviour to adolescence had become more concerned because of her lack of self-care and increasingly bizarre behaviour: Cos she wasn’t functioning . . . and it seems as though she was deteriorating in the sense that she 8

wasn’t looking after herself . . . sometimes she’d go shopping and, err, come back really late and obviously worried about her. You know sometimes it would be really cold and she wouldn’t be, sort of, wearing a coat, erm, and just sort of, like, really erratic behaviour, you know, and she’d be, like, talking to herself. (Brother) GP contact: ‘. . . he spoke to my sister more than he spoke to me’ Contact with GP was, overall, very positive. The young man and his aunt from family 5 told us how sensitive and responsive the GP had been: He did want to talk more about it and stuff. So I wasn’t fully comfortable but he understood in that way, so he didn’t actually push it and stuff, he didn’t try to get everything out of me, he just got the information that he needed basically. (Young male Asian aged 19 at onset) However, GPs did not always respond to the helpseeking with great sensitivity. The main difficulties that arose for our families were communication and engagement difficulties: He was very helpful, erm, his doctor was very helpful. he sort of, err, spoke to [nephew] very caringly and I was there, sitting behind him, just there, but [nephew] did all the talking. He was very, erm, caring and I think he probably, erm, he felt . . . he’d have to have a professional opinion on [his] behaviour. The young man from family 9 recalled how his GP had failed to speak to him during his appointment, directing all questions to his sister who had accompanied him: He didn’t even say anything, he just looked at my sister . . . and he said I’m going to send him to the clinic . . . he spoke to my sister more than he spoke to me. (Male Asian Pakistani, aged 19 at onset) This had made him feel invisible and that decisions about his mental health were being made about him and not with him, impacting on his already fragile sense of agency. The young woman from family 4 recalled how her GP had not asked her many questions: Didn’t really talk to me, just sort of asked me a few questions. . . . I know their [sic] not meant to be like counsellors but maybe ask more questions. (Young female white British aged 24 at onset) And when asked how she would have liked her GP to respond, replied: © 2014 Wiley Publishing Asia Pty Ltd

C. Connor et al. Them to sit down and talk to me . . . yeah, it takes time for me to adjust, when I see strange people or people I haven’t seen for a long time. (Young female white British aged 24 at onset) The young woman in family 7 also reported that her GP had not listened to her or asked her any questions, dismissing her behaviour as attention seeking: Erm, yeah . . . I don’t understand why he was like that, because even if someone was being an attention seeker or, you know, then, obviously they’ve got issues haven’t they, surely it’s their job? Her father felt that this had been because the GP had not known his daughter well enough and that they, as a family, had not been sufficiently equipped with enough information about mental health to inform their visit and ask relevant questions: I don’t understand why he would arrive at you know, why he would turn around and say something like that. She hadn’t been at the practice very long, [if ] she’d gone down to the doctors who had known her for many years they would have instantly known, probably. Problem was she hadn’t moved to that practice very long and her physical health had been quite good so she hadn’t seen the doctor, he wasn’t, he didn’t know her We didn’t we didn’t know enough about mental illness to make any judgements as to whether it was psychosis or all the other words, schizophrenia or all the other words we’ve heard and at that time didn’t really know . . . Communication difficulties was also a problem for the young people we spoke to. They talked about their inability to describe the things that were happening to them, how they had not possessed the language or the confidence to express themselves. This was the case for the young man from family 8, 14 at onset, who had found it incredibly difficult to put his experience into words: But at that time, I don’t know what was wrong with me, too much like, I didn’t know the voices, all of that, I couldn’t explain, I couldn’t say to him this is happening, I didn’t know at the time. . . . If I explained to him, hear the voices and all the things, he might have known. (Young male Asian Pakistani, aged 14 at onset) But even those who were able to explain things to their GP, being accompanied by a family member made them reluctant to open-up for fear of upsetting them. The young man from family 9 recalled: © 2014 Wiley Publishing Asia Pty Ltd

I could have, I could have easily explained my needs but because my sister was there I didn’t want to upset her. (Young male Asian Pakistani, aged 19 at onset)

Disconfirming cases Although the themes identified were pertinent for the majority of our families, two of our family narratives were unique, with long DUP associated with the inability to find alternative help-seeking sources rather than ineffective and delayed help-seeking behaviour. Indeed, existing research suggests, that even when families are equipped with adequate knowledge and recognize the early signs of psychosis, they often experience difficulties with engagement.28,29 One of these families described the multiple obstructions they had encountered in trying to access mental health services without involving their GP. The mother had made this decision based on a history of negative experiences relating to her own mental health. However, this had resulted in a series of frustrating phone calls to multiple organizations, to no avail, finally ending with the involvement of the police: And I remember phoning all these national organisations, and I got met with “our office hours are” . . ., and I’m thinking, “hang on, I’m in crisis here” “your office hours are!”, and then, “oh actually we don’t deal with that you need to ring such and such a place, who put you through to us, we don’t deal with that sort of thing, you need to go and see your GP”. And I went through every conceivable organisation I thought that might be able to help with mental health. . . . But as I said, because I didn’t actually know any immediate mental health service I could call to come to my home to help me with the situation that was going on, the only person I knew to call was the police. (Mother) Another of these unique narratives was from family 12 and concerned a 15-year-old young man who had good insight and who desperately wanted to seek help, but with no supportive adults around him was unable to do so: My brothers like these, are all like proper hardcore Christians and I just like the least religious person you’ll ever meet. I didn’t believe in any of that crap, so obviously I didn’t get on with them . . . they’re a really close bunch and I have always been the black sheep, so I’ve never been able to. . . . (Male white British, aged 15 at onset) 9

Help-seeking for first-episode psychosis DISCUSSION Increasing social and emotional withdrawal was the key factor that prevented the young people we interviewed from seeking help for FEP. This withdrawal left them unable to express their needs and resulted in a breakdown of family communication, leaving the onus for help-seeking on carers. However, carers own fears of loss of the young person and feelings of guilt about the things that were happening often made help-seeking difficult to initiate. However, in addition to these individual helpseeking deterrents, two factors emerged, both of which impacted the way young people and their carers negotiated help-seeking, namely, fear of stigma and a lack of knowledge about when, where and how to seek help. While we imagined stigma would be an important barrier to help-seeking for all of our families, it was something that was especially pertinent for our Asian family members, who spoke of how they feared family, friends and how the local community would regard what was happening as evidence of ‘possession’, ‘jinns’ or ‘evil spirits’. The Islamic faith has strong beliefs in witchcraft and spirit possessions, both of which are believed to bring the individual possessed or under the influence of witchcraft into increasingly close contact with the devil.30 Such cultural beliefs led a couple of our families to seek help from a faith healer, rather than a GP or mental health professional, engaging in treatments such as the devotional act of ‘Dhikr’ (the constant remembrance of Allah) in an attempt to gain strength against the evil spirit that had possessed them. While many of those we interviewed agreed that GP surgeries were an appropriate place to seek help for physical health issues, some were evidently confused as to GPs’ expertise in dealing with mental health issues. Families were also uncertain about the structure of mental health services often resulting in confusion as to how they could access EIP. Such findings support existing literature that highlights these knowledge deficits and their impact on effective help-seeking.31 The majority of our families sought help through a GP, and while they were satisfied with the way in which their GP had responded to them, with good listening skills and prompt referrals to EIP, several families reported difficulties, particularly in relation to communication and engagement skills. Young people, in particular, felt that GPs failed to use language they could understand, to speak directly to them and had not enabled a ‘safe’ environment within which they could talk about their mental health. However, the young people themselves, 10

often lacked the words or language with which they could describe the things that were happening to them and were also, sometimes, reluctant to open-up for fear of upsetting the family member who had accompanied them. In the face of the breakdown of communication, fear of loss, guilt, stigma and lack of knowledge, our families were desperate to make sense of the things that were happening by engaging in a collective normalization of symptoms. This helped them explain away difficult or odd behaviours, often treating them as ‘phases that will pass’ or attributing them to external and controllable events such as drug use. These findings support international literature that has found similar findings in the context of helpseeking for established mental illness7,8,10 and suggest that similar factors also feature barriers to help-seeking for families dealing with FEP. Indeed, carers often spend several months trying to make sense of their child’s symptoms before seeking help, a mean of 4.89 months before seeking help from non-health professionals, and around 7.33 months before seeking mental health professional advice.32 When help-seeking did occur in the families we interviewed, it often relied on a collective appraisal of the severity of behaviours or events; only those involving suicidal ideation, self-harm, self-neglect or aggressive and violent behaviour flagging-up the necessity for outside intervention. Although all of the themes identified were relevant to the majority of our families, two unique family narratives were associated with the inability to find alternative help-seeking routes rather than lack of knowledge or ineffective and delayed help-seeking behaviour. These highlight the necessity for the development of more inclusive help-seeking options for families and young people experiencing FEP. Strengths and limitations There is ‘. . . a prominent dearth of family-oriented research on treatment delay in the context of early psychosis’;29 however, collective family attitudes and beliefs play an important role in the nature and timing of help-seeking behaviour for those with mental health problems.12 This study is one of the first to explore the experience of help-seeking for FEP for 14 complete family dyads, with a DUP of more than 12 months. Our decision to conduct interviews individually, rather than jointly, helped ensure that both perspectives remained confidential and free of familial contamination. However, we cannot assume that the reasons for short delays in help-seeking will necessarily be the converse of those which have emerged from these © 2014 Wiley Publishing Asia Pty Ltd

C. Connor et al. narratives, as events outside of the families control may have been ultimately responsible for the delays detailed here. Exploration of the help-seeking behaviour of families with short DUP should now be conducted to develop further insight. While our findings have revealed the important role that carers play in instigating the help-seeking process, research suggests that many young people often seek the help of other adults around them, such as teachers33 This study did not set out to examine the wider social network of young people in terms of help-seeking delays and triggers, but future exploration should incorporate the wider social network of young people in making helpseeking decisions. Although not a prescribed criterion in the design of our study, the majority of our final cohort consisted of a large number of families of south Asian heritage, any conclusions we make, therefore, should be mindful that our findings may not necessarily be generalizable to a wider population. Future studies should now compare ethnic variations in familial responses to FEP. In addition, we acknowledge that the interviews in this study were retrospective in nature. In light of this, we make no assumptions about the reliability, or generalizability, of our findings to the wider context. However, we believe that the retrospective nature should not detract from the key findings, which support much national and international research detailing similar help-seeking barriers.

about the availability of, and means of access to, mental health services. However, improved help-seeking behaviour will be of little use if primary care and other helpseeking sources are unable to respond effectively, by facilitating an open and easy dialogue with which to enable young people and their carers to access specialist care. The insidious nature of the psychosis prodrome 20,40,41 and rare encounters with FEP (about once every 5 years) may make it difficult for GPs to unpick them from the regular ‘noise’ of adolescence.42 Nevertheless, with more than a third of young people aged 13 to 16 estimated as having a mental health problem,43 but often failing to disclose symptoms during GP appointments,44 there is greater need for GPs and other healthcare professionals to be skilled in interpreting both verbal and non-verbal expressions of emotional distress in young people. Indeed, such GPs have been shown to be more accurate in their diagnosis of mental health problems.45 ACKNOWLEDGEMENTS This research was funded by the National Institute of Health Research as part of the National EDEN study. Professor Birchwood, Professor Greenfield, Dr Connor, Sunita Channa, Colin Palmer and Clare Barker are partly funded by the National Institute of Health Research CLAHRC (Collaboration for Leadership in Applied Health Research and Care) Birmingham and the Black Country.

CONCLUSION Seventy to 90% of young people contact primarycare services at least once a year,34–36 the majority of appointments, however, are for physical health problems,37,38 young people reluctant to seek professional help for sensitive matters such as mental health or sexual advice, often preferring to speak to family or friends.39 It is parents or carers, therefore, who are required to make the final decisions about when, where and how to seek help, highlighting how better knowledge of the rationale families use when making these decisions, vital if improvements to their help-seeking behaviour are to be achieved. Our findings suggest that future public mental health interventions to improve care pathway delays ensure that whole family systems are targeted in the drive for better help-seeking behaviour for FEP, in particular, focusing on developing greater family and community awareness of psychosis, implementation of de-stigmatizing public health campaigns and better provision of information © 2014 Wiley Publishing Asia Pty Ltd

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