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Community Mental Health Journal ISSN 0010-3853 Community Ment Health JDOI 10.1007/s10597-014-9761-4

A Qualitative Exploration of ServiceUsers’ Information Needs and PreferencesWhen Receiving a Serious Mental HealthDiagnosis

Alyssa C. Milton & Barbara A. Mullan

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ORIGINAL PAPER

A Qualitative Exploration of Service Users’ Information Needsand Preferences When Receiving a Serious Mental HealthDiagnosis

Alyssa C. Milton • Barbara A. Mullan

Received: 29 July 2013 / Accepted: 6 July 2014

� Springer Science+Business Media New York 2014

Abstract Helpful strategies for communicating news of a

serious mental health diagnosis are poorly understood. This

study explored service users’ preferences for how they

would like clinicians to deliver such news when a diagnosis

of mental illness is made. Qualitative interviews were

conducted with forty-five individuals identifying with

serious mental illness in eleven community based mental

health facilities. Inductive thematic analysis resulted in

eight primary themes. Five themes related to the structure

and content of the discussion; including a focus on infor-

mation exchange, using an individualized collaborative

partnership paradigm, addressing stigma, balancing hope

with realism, and recognizing the dynamic nature of

diagnosis. The remaining themes related to the involve-

ment of others; including the importance of clinicians’

communication and relationship skills, involvement and

education of carers, and offering an opportunity for peer

support. The product of the synthesis of themes is a step-

wise model for communicating news of mental health

diagnosis.

Keywords Communication � Mental health and illness �Patient-provider relationships � Service user preferences �Qualitative research

Introduction

The recent launch of the DSM-V has brought about many

conversations in the literature surrounding the challenges

and benefits to psychiatric diagnosis (Wykes and Callard

2010). Although views on diagnostic practice may vary

amongst clinicians, many mental health systems in the

United States and Australia currently need practitioners to

make a mental health diagnosis so individuals can access

funding for treatments, services (Commonwealth Govern-

ment of Australia 2013) and medication subsidies (Com-

monwealth Government of Australia 2000; Cuellar and

Markowitz 2007). Serious mental health diagnoses are

widespread in the population [5.7 % USA (Kessler et al.

2005); 3 % Australia (Fourth National Mental Health Plan

Working Group 2009)]. Despite this high prevalence, there

is limited research examining how diagnostic discussions

take place (Rose and Thornicroft 2010). A better under-

standing of how such conversations are initiated by prac-

titioners when a diagnosis of mental illness is made, and

what the information needs and preferences are of the

service users who are receiving the diagnostic news may be

of both clinical and practical use.

Developments in mental health policy and practice have

led to a growing movement towards service user partici-

pation in mental health service. This movement encourages

service users to be active partners in the clinical process

rather than passive recipients of care (Lloyd and King

2003). To achieve full collaborative partnerships, both

parties need access to health related information. For

example, literature has suggested that service users have

the right to access information surrounding their diagnosis

and treatment (Cleary et al. 2010a). Knowledge relating to

diagnosis has been considered as a first step to psycho-

education (Gantt and Green 1985). When asked, the

A. C. Milton (&) � B. A. Mullan

School of Psychology, The University of Sydney, Sydney,

NSW 2006, Australia

e-mail: amil2403@uni.sydney.edu.au

B. A. Mullan

Health Psychology and Behavioural Medicine Research Group,

Faculty of Health Sciences, School of Psychology and Speech

Pathology, Curtin University, Bentley, WA, Australia

123

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DOI 10.1007/s10597-014-9761-4

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majority of service users favor open diagnostic disclosure

(Cleary et al. 2010a; Jha et al. 2001; Magliano et al. 2008;

Shergill et al. 1998), rather than the situation arising that a

diagnosis is formulated by a clinician for treatment pur-

poses but the information is not discussed with the indi-

vidual concerned.

As diagnosis can be a challenging time for individuals

(Cleary et al. 2010a), their families (Greenwood et al. 2000)

and clinicians (Cleary et al. 2010b) calls have been made to

improve clinician competencies and confidence when ini-

tially discussing a diagnosis by providing training (Cleary

et al. 2010b; Gerrity et al. 1999; Jha et al. 2001; Luderer

and Bocker 1993; Milton and Mullan in press; Scardovi

et al. 2003; Shergill et al. 1998; Wong et al. 2007) and

developing protocols (Cleary et al. 2009; Milton and Mu-

llan in press). To address this need, a step-wise model of

breaking news borrowed from oncology has been advo-

cated [SPIKES protocol; See (Baile et al. 2000; Cleary

et al. 2010a) and Table 2], and a model specifically tailored

to discussing a schizophrenia diagnosis has been developed

[See (Levin et al. 2011) and Table 2]. None of these models

have been empirically tested in mental health, nor have

they incorporated viewpoints service users. Broadening the

consultation process, as was done in the development of

oncology-related consensus guideline (Clayton et al. 2007),

has been recommended (Cleary et al. 2009).

The purpose of the current research was to use qualita-

tive research methods to explore service users’ views of

communicating news of diagnosis in order to inform pro-

tocol development.

Method

Design

The qualitative semi-structured interview schedule was

developed based on findings from a literature review of both

qualitative and quantitative research (Milton and Mullan

2012). The aims, methodology, sampling strategy, and

analysis followed the APRAC guide to research imple-

mentation for qualitative studies [See (NHMRC 2006)].

Sampling

The sampling strategy aimed to access a range of people

who had previously received a psychiatric diagnosis by

recruiting from eleven community-based suburban and

urban mental health sites in Sydney, Australia. The eligi-

bility criteria included individuals who have experienced

receiving a psychiatric diagnosis, were over 18 years of

age and spoke English. All interviews were conducted by

the first author, a registered psychologist.

Participants

Forty-five participants (46 % female; n = 21) completed

semi-structured interviews. Participants ranged from 25 to

79 years old (mean 45.6) with the majority born in Aus-

tralia (71 %; n = 32), South East Asia (11 %; n = 5), or

other locations (18 %; n = 8). All participants self-iden-

tified as a clinical mental health population under the ICD-

10 (F20–F29: Schizophrenia, schizotypal and delusional

disorders; F30–F39: Mood [affective] disorders; F40–F48:

Neurotic, stress-related and somatoform disorders). Par-

ticipants identified their main diagnosis as schizophrenia

(51 %; n = 23); schizoaffective disorder (13 %; n = 6);

bipolar (16 %; n = 7); and other psychiatric diagnoses

(13 %; n = 6). Twenty-four participants (53 %) indicated

multiple diagnoses had been received over their lifetime,

and eleven (25 %) advised of past drug or alcohol issues.

These characteristics are generally representative of

assertive community treatment teams (Hambridge and

Rosen 1994; Harvey et al. 2012).

Procedures

After being granted favorable ethical approved by the local

university human research ethics committee, the study was

advertised at community based mental health sites and

service users volunteered to participate. After reading a

complete study description, written informed consent was

obtained. During the interview, open-ended questions and a

reflective process of inquiry were used to aid the partici-

pants in illustrating their diagnostic communication desires

based on their experiences. In line with previous qualitative

research with mental health participants the interviewer

checked for understanding and simplified any statements

requiring further explanation (Sayre 2000). Interviews

were audio taped with an average length of 40 min.

Data Analysis

Data was interpreted thematically using previously

established inductive techniques (Braun and Clarke 2006).

For analysis, audio recordings were transferred into text.

Each transcript was reviewed by noting relevant points in

the individual’s own words. Consistency was checked

across all participants and a basic coding framework was

developed outlining all key concepts. Transcripts were

coded in NVivo 9 software using this framework. The

coding followed an iterative process of reading, coding,

exploring the pattern and content of coded data, reflection

and discussion. Similarities and differences in opinion

were examined, and differences dealt with through dis-

cussion to reach consensus. Additionally, a second round

of coding was completed using a theoretical perspective

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of the SPIKES protocol. Coding in NVivo was conducted

initially by the 1st author and a randomly selected sub-

sample of 10 % was checked for inter rater reliability by

the 2nd author, agreement was substantial [j = 0.702;

(Landis and Koch 1977)].

Results

Table 1 presents eight primary themes outlining individu-

als communication suggestions for a diagnosis discussion

and nine secondary themes related to clinician qualities.

Information Sharing and Knowledge Building

Open diagnostic information sharing was often recom-

mended by participants as it provided an understanding of

the issues and symptoms, and facilitated access to treatment

and support (I knew what was wrong with me, and if I knew

what was wrong with me I had a chance of possibly

understanding it better and maybe work on it a bit more:

P10, female, 27, experienced a schizophrenia diagnosis

et al.). It was believed that this must be completed in a

supportive way to buffer potential negative impacts of

diagnosis. For example, a continued sense of identity out-

side of diagnosis was important (I always say schizophrenia,

not ‘‘a schizophrenic’’, you happen to have schizophrenia,

but you’re a human being first, with a life and dreams and

goals: P2, female, 36, experienced a schizophrenia

diagnosis).

Participants advocated that diagnostic conversations

were useful if they provided information, skills, networks

and support for the individual to move forward with their

life and manage their own condition (I think the psychia-

trists, or the person in charge, should go through the

symptoms with you, should go through the treatment with

you, whatever medications you take for that type of illness,

giving you a range of choices in terms of medication,

explain everything to you, tell you ways you can manage

your illness: P40, female, 32, experienced a schizoaffective

diagnosis et al.). In particular, information about medica-

tion and managing side effects were referenced most fre-

quently by participants as important during the time of

diagnosis.

Strategies for information delivery were also proposed.

Many participants recommended that clinicians needed

sufficient time for such discussions. Furthermore, as an

adjunct to face-to-face discussions, participants highlighted

the importance of media including pamphlets, books, the

internet, linking with other peers, community based orga-

nizations and translators if necessary. It was considered

good practice for clinicians to gauge and clarify the indi-

vidual’s preferred information levels, be sensitive to

changes in these preferences, and check if/when clarifica-

tion was needed (It depends where you are at in your

recovery. Whether you are ready to take on board what

Table 1 Important features of

diagnostic discussionTheme Primary references

(amongst 45

participants)

Secondary references

(amongst 33 participants)

(1) Information sharing and knowledge building 59 –

(2) Hope for future recovery and realism 55 –

(3) Individualized collaborative approach 47 –

(4) Stigma reduction 31 –

(5) Recognizing the dynamic nature of the diagnosis 11 –

(6) Family and carer involvement and education 44 –

(7) Consumer connectedness and peer support 16 –

(8) Clinician qualities 96 –

(i) Provide encouragement towards independence

& self-management

– 26

(ii) Utilize a holistic focus – 23

(iii) Listen to the individual – 17

(iv) Show understanding and empathy – 17

(v) Are motivated to help the individual – 10

(vi) Possess a good professional knowledge base – 9

(vii) Foster mutual respect with the individual – 8

(viii) Are open, honest and develop trust – 7

(ix) Are accepting and non-judgemental – 7

(x) Provide sufficient time 7

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somebody else has to say, there’s a time where you have to

crash and burn a few times… it’s also important to make it

user friendly, and explaining it if you don’t understand all

the technical jargon: P39, female, 40, experienced a

schizoaffective diagnosis et al.).

Realistic Hope for Future Recovery

Individuals indicated that diagnostic conversations that

were devoid of hope were extremely immobilizing and

potentially dangerous. Holding hope for future recovery

was the third most frequently referenced concept (Provide

some sort of hope and some sort of feedback for the person

to realize that I can carry on and life is worth while living:

P11, male, 42, experienced a bipolar diagnosis et al.).

Overall, hope-focused discussions centered on recognition

that individuals could live meaningful lives and be pro-

ductive members of society. Encouraging empowerment

and self-determination was fundamental to achieving this.

Many felt that hope must be balanced with honesty and

realism in diagnostic conversations (Be realistic. Some-

times they give you false hope … Tell me if there is a

problem… lay it down what can I do? What can’t I do?

Right, cool, I’ll go live my life: P10). This balance had the

potential to increase trust in the clinicians, highlighting the

individual’s strengths but also areas to work on in order to

move towards recovery and wellness.

Individualized Collaborative Approach

Few participants spoke of an experience of receiving diag-

nostic information that was fully collaborative and tailored

to their needs. However, half of all individuals recom-

mended a collaborative partnership commencing at the

outset of diagnosis and treatment discussions, instead of

holding ‘‘them’’ and ‘‘us’’ distinctions between clinicians

and service users. Participants’ indicated that having a voice

and personal control in their care was a rights based issue

(We’re capable of thinking things through, and deciding for

ourselves, making our own decisions as adults, we are not

children any longer, we are not people that are just lost in an

unreal world… We should be included from the very first

conversations: P40). This shared decision making approach

was viewed as providing a mechanism for all parties to work

together as collaborators in determining the course of care.

Participants indicated a preference for information

sharing being collaborative between service users, clini-

cians, and when appropriate, nominated carers. Individuals

did recognize that such collaboration held challenges; for

example, newly diagnosed service users may have limited

health literacy or confidence to engage in discussions. To

overcome this, participants indicated that clinicians could

provide space for the individual to openly discuss

experiences or concerns, using skills such as active listen-

ing, information sharing and questioning to encourage

engagement (So it’s important for doctors to listen, if the

doctors don’t listen, and if the patient doesn’t speak up well

the doctor can’t do anything about it. Sometimes they might

say ‘‘how are you?’’, you know, help the conversation along:

P25, male, 42, experienced a schizophrenia diagnosis).

It was viewed as helpful if the chief focus of the diag-

nostic conversation was to assist the individual and the

health professional to gain knowledge, and build a foun-

dation to plan and take action from. This process may

allow the individual to become their own expert-by-expe-

rience (Just keep the ball rolling and have them [clinicians]

talk about everything that might contribute to their [service

users] understanding so they can become the expert in their

own life and recovery: P40).

Stigma Reduction

The concept of stigma was raised as important in diagnostic

conversations. Participants reported stigma could stem from

family, acquaintances, the community or the clinician.

Furthermore, some individuals spoke of a process of self

stigmatization, as they themselves may hold misconcep-

tions about mental health which could impact on their own

feelings of self worth. This could hold challenges in the

early stages of discussing a mental health diagnosis and may

require time to adjust and process such information. Sug-

gestions to address stigma included discussing it from the

outset of a diagnostic conversation, exploring the individ-

uals reactions to the news and the meaning they attributed to

the diagnosis, normalizing the experience, providing

information about the illness, its prevalence and its treat-

ments and treating the service user as an individual ‘‘Some

[clinicians] would treat the illness, some would treat the

person, and the ones that treated the person would have

better outcomes; P6, male, 35, experienced a schizophrenia

diagnosis). Overall, many individuals felt these steps would

lead to better engagement with mental health support and a

reduction in fear associated with help seeking and diagnosis.

Recognizing the Dynamic Nature of Diagnosis

Accuracy of diagnosis was also important for individuals.

Many individuals understood the difficulty in this process,

and as such there was a trend toward clinicians being

reluctant to put a name to diagnosis (If anything I have

noticed an increasing reluctance to use names of diseases,

and I’ve been cautioned by psychologists not to label myself:

P9, male, 48, experienced major depression et al.). Some

individuals also questioned the value of having a diagnosis

when treatment and management of symptoms was their

chief priority; however, when a diagnosis was made by a

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clinician, many indicated that access to this information was

a transparency and rights issue ‘‘but overall, I think it is better

to know and they talk to you about it [diagnosis], although it

might take time to adjust to the thought of things, it’s the ‘‘old

nothing about me without me’’ idea; : P12, female, 61,

experienced a bipolar diagnosis).

Just under half of all participants had changes or an

evolution in their diagnosis over time. Some individuals

were happy when diagnoses changed when it resulted in the

right treatments, or a belief it was a better fit (I can say that I

was more pleased to hear the latest diagnosis about bipolar,

because that seemed more specific to me in my case: P16,

male, 61, experienced a bipolar diagnosis et al.). Some

individuals, however, felt that diagnostic change required

more explanation and support to aid understanding and

adjustment (They [clinicians] are flip flopping between; first

as schizophrenia and now I’m schizoaffective… They

should have explained that that was the progression of the

illness… So you can understand more and think okay that’s

what’s happening to me: P40). Overall, communicating that

diagnostic change has the potential to arise over time was

considered important in early diagnostic conversations.

Many individuals felt this could reduce the idea that diag-

nosis is a permanent label, but that it is instead a more

dynamic description of the symptoms they are experiencing

that aids understanding and treatment.

Clinician Qualities

The most frequently referenced element of diagnostic dis-

cussion related to the core qualities of the clinician. Cli-

nician skills and qualities could impact greatly on an

individual’s experience of receiving a diagnosis and ulti-

mately their engagement with the mental health system.

The recommended core qualities (presented in Table 1)

reflected a desire for staff to be approachable rather than

inaccessible and in a position of authority, to encourage

and support the individual to work towards wellness or

self-management, and to find a balance between their

medical knowledge and promoting a holistic approach.

During the diagnostic conversation some additional items

were viewed as helpful. This included the clinician

accepting ideas and opinions from the service user’s per-

spective, providing the time to explore the purpose and the

meaning of diagnosis, and empathetically supporting the

individual’s reaction towards the diagnosis.

Family Involvement and Education

Family involvement was referenced by just under half of all

participants, although some individuals did not have, or

want, family support. A proportion of participants described

family involvement as crucial as they supported the persons

to navigate the system. Many felt that inclusion and educa-

tion of significant others in the treatment process was useful

(My other family members would have benefited from some

professional advice or a workshop or a group. My mum

actually started her own support group in our area, because

she just found that there was no support for the families of

people with mental illness… They [Clinicians] were telling

me stuff, but I’m so sick I can’t take it on board. Your family,

your carer, have to work together. They don’t do that enough,

they just treat the patient: P10).

Consumer Connectedness and Peer Support

Peer support was proposed as an option of additional

support after diagnosis (I think a peer worker would be

good… You know as well as [clinicians]… I suppose a

peer working can give you all the information in relation to

the medication and your illness and that type of thing….

maybe a buddy system: P39). Participants felt that the lived

experience of a peer was valuable as a particular sensitivity

and empathy would be brought to the relationship.

Discussion

This is the first known qualitative study that fully explores

service users’ desires and needs based on their experience of

receiving a serious mental health diagnosis. The dominant

themes presented in this paper such as collaboration, hope,

knowledge building and stigma reduction appear closely

aligned with many concepts central to recovery principles

[See (Jacobson and Greenley 2001; Shepherd et al. 2008)]

which are also now promoted across various international

mental health policy initiatives (Compagni et al. 2006).

Outcome related evidence to support these themes raised by

participants have been reported in previous literature. For

example, an inverse relationship between stigmatizing

attitudes and treatment adherence has been reported (Sirey

et al. 2001); individuals with hope for future recovery have

been found to have a less pronounced perception of affec-

tive and social difficulties due to their diagnosis (Magliano

et al. 2008). Better provider-service user relationships show

positive outcomes including improved quality of life and

social functioning, and reduced symptoms and time spent in

hospital (McCabe and Priebe 2004). Psycho-education

interventions show evidence towards having positive

impacts on functioning, relapse and readmission rates

(Rouget and Aubry 2007; Xia et al. 2011).

Clinicians acknowledging the dynamic nature of mental

health diagnosis was a theme raised that has rarely been

researched and warrants further exploration. Clinical staging

models, which can be seen as a more refined form of diagnosis

(McGorry et al. 2010), may be a tool that assists to improve

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Table 2 Stepwise models outlining methods of discussing psychiatric diagnosis

SPIKES protocola Practitioner model for communicating a schizophrenia

diagnosisbConsumer suggestions for communicating a serious

mental health diagnosis

Setting up the interview Prepare for the meeting. This should occur within

2 weeks of the patient’s admission. The patient

should meet diagnostic criteria. Consider which

multidisciplinary team members and which family

members should attend. The meeting is led by the

most appropriate senior clinician. Organize the

meeting room, seating arrangements, and

educational material in advance

Build a relationship with the consumer and foster

mutual respect from initial contact. Ensure that the

practitioner has a good knowledge base of both the

individuals they are supporting and their mental

health situation. Attempt to ensure the timing is

right for the individual to have the conversation; this

may take a number of meetings. Provide any

communication assistance if required (e.g.

translator). Arrange for any other involvement from

family, significant others if the consumer wishes.

Ensure there is sufficient time for a full discussion

Assessing the patient’s

Perception of their medical

circumstances

Reviewing the consumers and families understanding

of psychiatric illness. Use a symptom checklist.

Correct misperceptions and skepticism. Discuss

precipitants, such as substance abuse, in the context

of the stress-diathesis model, linking this to potential

psychotherapeutic interventions that can ameliorate

distressing thoughts and emotions

Ensure the consumer feels comfortable. Check the

consumers’ understanding of why they are there and

the purpose of the current mental health support.

Listen to any additional needs that the service user

may have that need to be addressed. Address any

misgivings or concerns that the consumer may have

in relation to receiving support

Obtaining the patient’s

Invitation to receive the

information

Negotiating the agenda collaboratively, maximizing

engagement in care

Check if consumer would like to talk about the mental

health condition. Provide space in the conversation

for consumers to participate and talk. Listen and

respond. Encourage a collaborative approach to

decision making and engagement in care

Giving the requisite

Knowledge and information

Discuss the prognosis, including best, worst, and most

likely outcomes. Link improved prognosis to

adherence to treatments, better coping with stress,

avoidance of substances, cohesive family

functioning, and work rehabilitation. Discuss

diagnostic certainty and uncertainty, addressing

emotional cues. Discuss meaning of

‘‘schizophrenia’’ for the patient and family: Use the

‘‘go around’’ skill to garner consensus, reduce

stigma, and promote self-esteem.

Consider disease attributions. Preserve trust and

resolve conflict. Discuss barriers to adherence,

emphasizing that engagement with a comprehensive

treatment framework promotes recovery

Tailor the information to the individuals’ needs and

preferences. Ensure the communication is clear, has

sufficient depth. Avoid jargon and didactic

communication. Actively reduce stigma. Provide

psycho-education about illness, symptoms,

prognosis and treatment. Be transparent about

medications pros and cons, that it is a process of

adjustment and can involve a trial and error process.

Discuss diagnostic certainty and uncertainty, and

that diagnosis can change over time. Explain the

benefits of knowing information about mental health

Responding Empathically to

the patient’s Emotions as a

consequence of the news

Empathic communication of a diagnosis to patients

and families

Respond to the persons reactions sensitively,

acknowledge that it can be a difficult time; it will

involve some changes and adjustment. Also

encourage hope and recognize positive aspects of

the individual’s life. Be understanding, empathetic,

encouraging, non-judgmental and show that the

support provided is there to assist the individual

Summarize the treatment

processes and next few Steps

Discuss the follow-up plan. Encourage questions

about work, dating, marriage, children, disclosure to

others, relapse prevention, and ways family

members can help. Motivate and inspire hope while

giving practical guidance on steps to promote

recovery. Praise family for cohesiveness.

Acknowledge their distress. Summarize. Arrange

follow-up

Check if the consumer has any questions. Encourage

future discussions and arrange a follow-up meeting.

Provide additional materials for further reading

including written information, recommended

internet sites, links to mental health groups or peer

support. Provide information, signposting and

support to specified families and carers. Encourage

self learning, information seeking and self

management. Collaboratively plan next steps that

are both holistic and recovery focused, move beyond

an illness focus to other areas of a person life

a Source: Baile et al. (2000)b Source: Adapted to fit SPIKES protocol from Levin et al. (2011)

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communication around illness progression or change. This

study finds some evidence to suggest that a dimensional rather

than a categorical approach to discussing disorders may assist

to reduce individuals’ identity infusion with diagnosis. More

research, however, is needed to determine the best mecha-

nisms to support an individual through effective communi-

cation at initial stages of diagnosis.

How other stakeholders are involved in diagnosis was

frequently raised by this sample. Health professionals’ core

qualities were viewed as vital to facilitating a supportive

diagnostic discussion. This finding is supported by previous

research outlining the importance of ongoing helping

relationships and recovery principles (Repper and Perkins

2003; Roberts and Wolfson 2004). Family and carers being

included wherever possible was also raised, which is in line

with previous mental health recommendations (Davidson

2008), policy (Compagni et al. 2006) and systematic

review evidence relating to family focused psycho-educa-

tion (McFarlane et al. 2003). Peer support may also help

individuals to access information and support in the early

period of adjusting to a mental health condition. Access to

peer support has been widely advocated internationally

(Clay et al. 2005; Deegan 1996; Faulkner and Basset

2012), however, research outlining the effectiveness of

such programs is currently limited (Lloyd-Evans et al.

2014), further research is needed to explore whether this is

a viable additional support that is offered after initial

diagnostic discussion with health professionals.

To synthesize the information in the present paper,

dominant themes have been summarized through theoreti-

cal analysis and are compared to both the SPIKES protocol

and the Levin model for discussing schizophrenia

(Table 2). As a whole, service users’ views appear in

accord clinicians’ recommendations of how to discuss

schizophrenia, and follow the step-wise process in line with

the SPIKES protocol. Elements from each model can be

viewed as complementary, and fill gaps in the process that

may not be identified by one lone stakeholder group.

Further research is required to explore whether pro-

cesses raised in this study can be applied in practice to be

of benefit to service users. Such research will also assist to

address existing study limitations; such as relying on self-

report which introduces challenges with recall, and

potential external validity concerns beyond the Australian

context. The voluntary nature of the study participants may

also skew the results towards individuals who are histori-

cally willing to engage with services.

Conclusions

Overall this study has potential clinical implications,

although these should be generalized cautiously given its

qualitative nature. At an individual level, the principles of

service users being an active partner in the clinical process

rather than being merely compliant with clinical decisions

(Lloyd and King 2003) appear to also be at the forefront of

discussing a diagnosis. The importance participants

attached to collaborative participation in diagnostic dis-

cussion may reflect a broader trend in health services away

from traditional didactic medical practice towards a col-

laborative illness management approach encouraging

active participation from service users (Mueser et al. 2002).

At a macro level, service users are contributing to decisions

about the way services operate (Lloyd and King 2003). The

present research achieves this through a deep level quali-

tative consultation, which provides an opportunity for

service users to actively utilize their past experiences and

knowledge to contribute to mental health service provision.

Conflict of interest None.

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