Raising awareness, early detection of psychosis and accessing help quickly remain the greatest challenges.
- This article has been double-blind peer reviewed
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Naik, V.N., Bowden, S. (2008) Early intervention in psychosis: Client and carer perspectives. This is an extended version of the article published in Nursing Times; 104: 18, 32-33.
AIM: To evaluate service users’ and carers’ views on the early intervention in psychosis service in relation to best-practice guidelines.
METHOD: Both groups were sent a questionnaire on their experiences of care provided.
RESULTS: The majority responded positively to many items, indicating they thought the team met best-practice guidance. Areas where guidelines were most closely adhered to were: helpfulness of initial contact for carers; service users’ improved understanding of problems and ability to cope with difficulties; and satisfaction with amount and location of contact among both groups. Areas for further improvement included: promoting awareness and access to early intervention services; service-user involvement with care plans and promoting optimism for carers.
CONCLUSION: Raising awareness, early detection of psychosis and accessing help quickly remain the greatest challenges. Establishing a health promotion strategy in all early intervention teams is crucial. Further training may be necessary for practitioners to ensure service-user involvement in care plans and to promote hope for carers.
Vandana N. Naik, PsychD, MSc, MA, BA, is consultant counselling psychologist; Stacie Bowden, BSc, is assistant psychologist; both at Surrey and Borders Partnership NHS Trust.
The majority of first psychotic episodes occur at a crucial period in a person’s development, often between the ages of 14-35 (Department of Health, 2001). Recognition of the need for early intervention in psychosis services was a key recommendation in The NHS Plan (DH, 2000). The Mental Health Policy Implementation Guide advised that ‘discrete and specialist’ early intervention services be introduced nationwide (DH, 2001). Each service should serve approximately one million people, assessing around 150 new cases each year, with a maximum key worker to patient ratio of 1:15. It was intended that by 2004 every trust would have established its first early intervention team. The DH’s policy implementation guide highlighted principles of care and best-practice guidelines in such services, as shown below.
Box 1. Best-practice guidelines for early intervention in psychosis services (NICE, 2002; DH, 2001)
|Early detection||Programmes in communities and other agencies such as primary care and educational institutions to increase awareness and reduce stigma of psychosis|
|Quick access to services||Clear and quick pathways of care which are explicit and understood by relevant agencies|
Sustained engagement using an assertive outreach approach in low-stigma settings, such as service users’ homes
Failure to engage in treatment should not lead to case closure
Use of low dose or atypical neuroleptics
Service users involved in decision-making and monitoring of side-effects
|Psychological therapies||Promotion of coping skills, psycho-education, family work and cognitive behavioural therapy|
|Providing pathway to valued education and occupation||Early efforts to get person back to work or education|
|Comprehensive care plan||Initial care plan comprehensively reviewed at 3-6 months|
|Crisis plan||Service users and carers know when and how to call for help at any time|
|Family and carers’ involvement and support|
Family and carers should be involved in assessment and treatment process as early as possible
Provision of psycho-education, family work and regular support
According to the ‘critical window’ hypothesis (Birchwood et al, 1998), the early period after onset of a first psychotic episode presents excellent opportunities to reduce treatment resistance, stabilise developing disabilities and influence the way clients appraise their illness. Furthermore, research suggests that prompt and optimal management of a first episode allows a more rapid recovery, better prognosis and reduction in hospitalisation and morbidity (Power et al, 1998).
Recent guidance and best practice represent steps to achieving improved quality of care in psychosis treatment. These efforts have, on the whole, been developed by clinicians and expert practitioners. It is, however, increasingly recognised that gauging service-user and carer perspectives provides practitioners with an alternative reference point from which to evaluate services (Gray et al, 2005).
On the whole, research on client and carer perspectives has been conducted before the introduction of early intervention teams and has explored satisfaction levels across a diverse range of services for psychosis (McKenzie, 2006). To our knowledge very few published studies have looked specifically at early intervention services (Garety et al, 2006; Sin et al, 2005; O’Toole et al, 2004).
This last study provided a deeper analysis of client views and attitudes and, as such, is more pertinent to our research than the others. It presented a systematic qualitative evaluation on service users’ experiences of a specialist first episode intervention designed along best-practice guidelines (O’Toole et al, 2004). Results indicated that adherence to best- practice guidance was appreciated; clients identified the importance of involvement in treatment decisions, flexibility of appointments and a ‘human approach’ to recovery. Their study did not analyse relatives’ or carers’ perspectives.
This study’s aim was to evaluate how service users and carers view the early intervention in psychosis service in relation to best-practice guidelines.
The early intervention team, based in Surrey, covers suburban and semi-rural areas and serves a population of approximately 430,000. The team consists of multidisciplinary staff including community psychiatric nurses, social workers, psychologists, occupational therapists, support time recovery workers and psychiatrists. The service aims to work within best-practice guidelines.
Two questionnaires were designed: one for service users and one for carers. Both were based on the Likert-type pre-specified response alternatives and coded on a five-point scale. All questions were worded as positive statements and based on good- practice guidance (NICE, 2002; DH, 2001).
Participants were asked to rate the extent to which they agreed or disagreed with these statements. A score of 1 indicated ‘strongly disagree’, while 5 indicated ‘strongly agree’. There was also an opportunity to make comments about individual items on the questionnaires.
Initial draft versions were given to two service users as a pilot and to members of the early intervention team for comments. Further amendments were made following suggestions.
Questionnaires were sent to 68 service users and 61 respective carers. ‘Service users’ were all clients involved with the team except those under the ‘screening/assessment’ category and three with no contact address at the time of the study. ‘Carers’ were either family members or living/marital partners that were considered to be primary care- givers of respective clients. For each service user sent a questionnaire, one was sent to the identified primary carer. Seven clients did not have a known primary carer whom we could contact.
Response rates for service users and carers were 31% (21) and 52% (32) respectively. Six participants (five carers and one client) were removed from the analysis because they did not complete at least one-third of the questionnaire.
Pathway to services
Awareness: 65% of service users agreed or strongly agreed with the statement that it was easy to know where to obtain help when they first had difficulties. On the same item, 34% of carers agreed or strongly agreed.
Access: 90% of service users agreed or strongly agreed that it was easy to access the team. On the same issue, 59% of carers either agreed or strongly agreed, while 15% disagreed on this.
Initial contact: 90% of service users and 100% of carers agreed or strongly agreed that their initial contact with the early intervention team was useful.
On average, across all four items exploring satisfaction with time, location, duration and frequency of appointments, 92% of service users agreed or strongly agreed. The vast majority (91%) of carers agreed or strongly agreed that it was easy to contact the team. All (100%) carers agreed or strongly agreed with the item about location of appointments.
Three-quarters (75%) of service users agreed or strongly agreed that the team had supported them to structure social and leisure activities. Likewise, 85% of carers scored this for their family member. The majority (78%) of carers agreed or strongly agreed that their relative had been offered support with education/employment. Due to a methodological error, a measure of client responses on this item was not taken.
Psychological and emotional support
Some 85% of service users agreed or strongly agreed that they were offered help to cope with troubling thoughts and feelings. A further 15% were ambivalent and scored ‘neither agree nor disagree’.
Nearly two-thirds (63%) of carers agreed or strongly agreed that they had received sustained engagement from the team even when their relative did not want to engage, while 30% reported that this was not applicable to them and 7% failed to respond.
Support for carers
Nearly all (93%) carers agreed or strongly agreed that they felt supported by the team, and 88% agreed or strongly agreed the support given was helpful. The majority (85%) agreed or strongly agreed that support from the team had reduced distress for their families. On assessments, 89% reported they had been offered a carers’ assessment. Of those who were offered one, 76% agreed or strongly agreed that it had been helpful.
Nearly all (90%) of service users agreed or strongly agreed that they could discuss medication options and their effectiveness, and 80% agreed or strongly agreed they had opportunities to discuss side-effects.
Service-user involvement and recovery
Four-fifths (80%) of service users agreed or strongly agreed that they felt actively involved with their care plan, while 10% disagreed with this. On whether they felt the team had helped with their recovery, 90% of service users agreed or strongly agreed.
Four-fifths (80%) of service users agreed or strongly agreed that the team had helped to promote hope about future recovery. However, 15% neither agreed nor disagreed and a further 5% disagreed. From the carers’ perspective, 66% agreed or strongly agreed, while 26% neither agreed nor disagreed.
The vast majority (95%) of service users agreed or strongly agreed that the team had helped them to understand their problems and how to cope with difficulties in future. For carers, 81% scored the same, with 11% neither agreeing nor disagreeing and 4% disagreeing. Nearly all (90%) of service users and 100% of carers agreed or strongly agreed that they knew whom to contact at any time for help.
The majority of service users and carers responded positively to most items on the questionnaires, indicating that, on the whole, both groups thought the team met best-practice guidelines.
Key areas of strength for service users and carers
Initial contact: All carers and most service users reported that their initial contact with the team had been useful. This is particularly encouraging in view of research indicating that first contact with mental health services can often be difficult. At the initial stage of assessment and treatment, relatives have reported significant levels of stress, often related to their exclusion from services (Kuipers and Raune, 2000). Providing a positive and useful first meeting with the team may be significant in reducing stress levels for service users and carers and promoting greater collaboration with team members.
Coping with difficulties: Almost all service users reported they have a better understanding of their illness and how to cope should they deteriorate. With the growing recovery-oriented approach in mental health services, increasing emphasis is placed on relapse prevention (Jacobson and Greenley, 2001).
Despite this, the provision of coping techniques continues to be a challenge for many services. A review of early intervention services for psychosis found that more focus on relapse prevention and functional recovery was still needed (Killackey and Yung, 2007). In light of this research, it is encouraging that the item on coping with difficulties was a particular strength of this service.
Contact for help: All service users and carers reported that they knew whom to contact for help at any time. Crisis planning is integral to recovery and an important aspect is knowing the right person to contact when in need of help.
Previous research has highlighted concerns in this area: 19% of mental health service users with a psychosis reported that they did not know where to obtain help out-of-hours or in an emergency (Rethink, 2003). These results show that team members are working hard to provide both groups with all relevant information regarding emergency contacts, helping to ensure that no crises escalate.
Appointments: Findings demonstrate that the team provides a flexible service in terms of time, duration, frequency and, in particular, location. The highest ‘strongly agree’ response from both service users and carers was found regarding the convenience of the place in which they are seen. This was most often at home or the place most convenient for the service user or carer.
Key areas for improvement
Since high levels of reported service-user satisfaction can be common, it may be more revealing to explore those areas with a less positive response. It is important to note that many of these areas are only relative weaknesses, with most items still achieving agreement from the majority.
Awareness and access: Across all items in the survey, awareness and access prompted the greatest level of disagreement from both groups. Qualitative data indicated that many relatives knew nothing about the services available and that several service users were only made aware via hospital admission. Furthermore, as the item that received the most additional comments, awareness of the service appears to be a significant concern.
Narratives of young people with psychosis have demonstrated a clear lack of understanding about what they were experiencing or what they should do (Boydell et al, 2006). It is clear that greater public education on the nature of psychosis and services available is needed. Research has shown the success of public campaigns on psychosis, not only in reducing the duration of untreated psychosis (Malla and Norman, 2002) but also in decreasing the use of compulsory detention (Johannessen et al, 2001).
The most frequent route into services for young people is often via the education system (Farmer et al, 2003). Given that many service users are young adults, education campaigns in schools, colleges and universities are particularly important.
Service-user involvement in care plans: The item measuring involvement in care plans had the second highest number of service users disagreeing with it. Service-user involvement is a key aspect of recent government policy guidelines. However, actively involving them in decisions over care plans has not always been easily achieved. A report by Rethink (2003) on mental health service users’ perspectives found that 48% were not sure or did not know if they had a care plan.
Research has stressed the importance of service-user involvement for early intervention teams. Clients reported that being listened to, understood and asked for an opinion on treatment decisions was central to their recovery process (O’Toole et al, 2004). This early intervention service has incorporated formal procedures to promote and maintain service-user involvement via the Care Programme Approach. Despite this, results indicate that further improvement can still be made to ensure care plans are jointly decided, understood and regularly reviewed for all service users in a way that they feel involved in the process.
Optimism for carers: The item on promoting optimism for carers about the future received the third lowest level of agreement. Furthermore, this item was regarded with the most ambivalence across the survey.
Giving carers a sense of optimism about future recovery is a significant part of supporting them. Fostering hope in carers of people with severe mental illness is central to their own coping (Bland and Darlington, 2002). Family members, as well as professionals, have been identified as sources of hope (Darlington and Bland, 1999). In view of this, promoting a sense of optimism in carers and relatives may also benefit service users.
Important in nurturing a sense of hope is mental health practitioners’ ability to provide encouragement and support, to develop connections with service users and carers and to be available at a crisis (Bland and Darlington, 2002). These factors are all worth consideration in light of the findings.
We were aware we were asking a relatively vulnerable client group and their equally vulnerable carers to comment on services received. We chose to use a short, structured questionnaire as opposed to an interview or other structured outcome measures for ease of completion and its non-intrusive element. In the covering letter accompanying the questionnaire, we also stressed that responses were anonymous and would not in any way affect use of services. We encouraged and welcomed feedback as a way of improving the service.
It is necessary to interpret the largely positive findings of our survey with some caution. It has been suggested that results may reflect either a general attitude of criticism towards the NHS or some loyalty to the concept (Staniszewska and Ahmed, 1999), rather than a measure of satisfaction itself (O’Toole et al, 2004).
The methodological limitations in this study are those found in any such study; unsatisfied service users and relatives may be those who chose not to respond to the survey. Views may only reflect those who responded, which was a realistic sample size. The five-point Likert scale was open to bias of a set response type, to either consistently over-score or under-score responses.
We attempted to improve content validity by listing items featured in the Mental Health Policy Implementation Guide (DH, 2001) for early intervention in psychosis teams. We also tried to ensure face validity by piloting the questionnaire with two service users and members of the team.
This study is limited in that we did not carry out any statistical tests of reliability. We hope the good response rate will help to enhance the study’s general applicability.
Implications for practice
Positive aspects of service provision include coping techniques and relapse prevention and the fact that service users and relatives know where to contact for help.
Services should have out-of-hours and crisis numbers.
The results demonstrate it is important to improve awareness of psychosis and how to access help at its onset, through a health promotion strategy in the team.
Working closely with families and promoting hope for relatives is another area that services should focus on more, through carers’ support and family work.
It is vital to ensure service-user involvement in care plans. This should also include their involvement in other aspects of the service such as training, service development and staff recruitment.
This study provides a service-user and carer perspective on best-practice guidelines for early intervention in psychosis services. Results lend support for government recommendations, demonstrating that working in accordance with national guidelines is appreciated by service users and carers.
Practitioners working with young people with psychosis will need to provide a more sustained, intensive assertive outreach approach to care, which is not always common practice in other settings. Building on a young person’s strengths and interests can help engage service users and also develop their self-confidence and self-esteem. Close working with and support for the family is also important in this age group, as most live at home.
Clinicians must ensure they not only promote hope for service users but also carers, who are likely to be experiencing similar states of confusion, hopelessness and a sense of loss following a first episode of psychosis.
It appears that practitioners could be doing more to ensure service users feel involved in their care plans. When working with young clients it is necessary to create an empowering and self-reflective environment that will help them develop autonomy and decision-making skills - not only in relation to their care but also to life in general.
Promoting early awareness of psychosis and knowledge of which services can help remains the greatest challenge. Establishing a health promotion strategy in all early intervention teams is crucial to improve public awareness.
Such a strategy would allow the team to set targets and look at specific ways of improving public awareness of mental illness and reduce stigma in the local area. This would also help with early detection of psychosis and reduce duration of untreated psychosis, which is linked to improved outcomes and fewer relapses. Examples of health promotion work might include visiting local schools or youth agencies to talk about mental illness and linking with school counsellors and other youth agencies.
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