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Responding to the needs of carers of people with schizophrenia

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Karen Magorrian, RN, RMN.

Day Hospital Manager, Barnes Hospital, South West London, and St George's Mental Health NHS Trust, London. She was formerly Senior Clinical Nurse, Hounslow and Spelthorne Community and Mental Health NHS Trust, The West Middlesex Hospital, Hounslow, Middlesex

Schizophrenia is a serious mental illness that affects every aspect of an individual's life and has a major impact on the families and carers involved. Schizophrenia is primarily treated with antipsychotic medication but, just as importantly, patients require regular support and monitoring by both family members and health professionals.

Schizophrenia is a serious mental illness that affects every aspect of an individual's life and has a major impact on the families and carers involved. Schizophrenia is primarily treated with antipsychotic medication but, just as importantly, patients require regular support and monitoring by both family members and health professionals.

Carers and families have always played an important role in the management of people with schizophrenia. With the increasing emphasis on maintaining clients in the community, the role of carers and families in supporting people with mental illness is assuming even greater significance.

The mental health team at the West Middlesex Hospital in London were concerned because, despite the increasing emphasis on the carer's role, there seems to be very little understanding of carers' concerns and knowledge about schizophrenia. This concern lead to the development of this research project, which took place over one year at the West Middlesex Hospital.

Aims of the study
The project aimed to identify important concerns for carers of people with schizophrenia and the degree to which these concerns are acknowledged and incorporated into care plans formulated by the mental health team. It also aimed to determine to what extent communications between carers and the mental health team are influenced by the carers' understanding of aspects of the illness and its management.

It was felt that it would be of value to explore these issues, as literature and clinical experience show that giving carers regular contact with the mental health team does not in itself improve communications between carers and the team (Shepherd et al, 1995).

Aetiology and incidence of schizophrenia
Schizophrenia is characterised by psychotic symptoms, whereby the individual can lose touch with reality, and may not appreciate that he or she is ill and in need of treatment. It is an illness in which the person suffers from disorders of thought, emotion, behaviour and perceptions.

Approximately one in 100 people may be diagnosed with schizophrenia at some stage in their life, with the peak age of incidence between 16 and 25, and declining with age (Howe, 1995).

The chances of developing schizophrenia are divided equally between men and women, although men tend to develop it at a younger age and tend to be more seriously affected in the long run.

Schizophrenia can run in families, with approximately one-third of cases having a genetic link - the risk of developing schizophrenia is greater the closer the affected blood relative.

There are known factors that can feature in the immediate build up to a schizophrenic episode:

- Hormonal changes, such as puberty, childbirth

- Recovery from a virus

- Environmental changes, such as moving away from home for the first time

- Drug use, for example cannabis, LSD, amphetamines

The symptoms of schizophrenia are various and were first described by Schneider in 1959 as 'first-rank' symptoms, later to be defined by Strauss in 1974 as positive and negative symptoms (Kavanagh, 1992) (Table 1). Dividing symptoms into positive and negative symptoms helps the clinician when making a diagnosis and looking at probable prognosis and treatment.

The most common of the positive symptoms are hallucinations, which are most frequently auditory. The person hears voices, which can often be threatening or compelling. Positive symptoms are more obvious to casual observers as they can often cause the person to act in a bizarre fashion. They are normally more noticeable in the early stages of the illness and are usually well-controlled by medication (Howe, 1995).

Negative symptoms, such as lack of motivation and poor self-care, which are more commonly reported by carers as the most troublesome, are more difficult to define and are less susceptible to medication. They normally lead to social withdrawal, making work and interpersonal relationships difficult. Negative symptoms tend to increase with the duration of the illness and when they are a marked and dominant part of the illness then prognosis is poorer; but improvement can be reached via social support and management of environmental factors (Howe, 1995).

Work leading up to the project
In order to undertake the project it was important to find a way of identifying those carers with a high level of involvement in the client's care. A way of doing this presented itself through the care programme approach meetings.

The care programme approach (CPA) was introduced in April 1991 as part of the Government's mental health policy and aims to ensure that all mental health clients referred to and accepted by the mental health services have their needs and level of risk assessed. There are four key elements, which must be met under the CPA approach:

- Assessment of health and social needs

- A plan of clinical action (written care plan)

- Allocation of a care co-ordinator

- Regular reviews of the client's needs and care.

The CPA has two levels:

- Standard. This applies when clients require minimal interventions, usually from one team member, or are getting low-key support from more than one team member or agency. Such clients will be more able to manage their mental health problems, will pose little risk to themselves or others and will normally keep in regular contact with services. They will be allocated a care co-ordinator who will be responsible for assessing their needs and level of risk and implementing a care plan. Care plans can be reviewed informally by the care co-ordinator and preferably with all the members of the multidisciplinary team involved.

- Enhanced. This applies to those clients with severe and enduring mental health problems, who need a medium-to-high level of support from more than one professional or agency. For clients on enhanced CPA a care co-ordinator must be appointed. This is usually the person who has had the most contact with the client and is most able to meet the client's needs. The care co-ordinator's responsibilities are to:

- Continually assess the client's needs and level of risk

- Monitor the implementation of all parts of the care plan

- Regularly review the care plan

- Act as a point of reference for other professionals, relatives or carers

- Keep up to date with the care of the client wherever the client may be

- Take action when the care plan is not implemented or a problem arises.

Regular CPA meetings will take place to review the client's care and level of needs, with all those involved in the client's care present. This provides an opportunity for clients, carers and health professionals to maintain regular contact and communication. Reviews must be held at least once a year but are normally more frequent (South West London and St George's Mental Health NHS Trust, 2001).

Before April 2001 carers had informal access to support from professionals. Since the implementation, in April 2001, of the Carers' and Children's Disabled Act 2000 carers have new rights. Under this Act, carers are entitled to an assessment of their own needs, and to access services, independently of the client.

This right is reinforced by the NHS Framework for Mental Health (standard six), under which all mental health service providers will be expected to demonstrate how they address carers' needs, and to provide a percentage number of carers assessed and receiving services (South West London and St George's Mental Health NHS Trust, July 2001).

It is hoped that this will make it easier for carers to discuss issues causing them concern but, as this paper highlights, carers often find it difficult to approach the professionals involved in their relative's care. Alternative sources of support and information for carers are available in the voluntary sector. Throughout the UK groups such as the National Schizophrenia Fellowship and Carers' National Association provide a wide network of support groups and information resources.

The importance of CPA meetings is supported by research demonstrating that the interests of families and clients are best served by collaboration between health professionals and non-professional carers (Kuipers and Bebbington, 1985).

However, problems in communication are not uncommon, leading to carer dissatisfaction and sub-optimal support for carers. Research indicates that health professionals may not address carers' concerns and that some carers are dissatisfied with their involvement in the client's care (Biegel et al, 1995) and with the advice and information they receive (Wray, 1994). These concerns indicate that a new approach is needed to enhance the level of communication with the mental health team and improve carer satisfaction.

Sample and methodology
The sample group in this project consisted of 45 carers who each participated in an interview of approximately two hours. The interview had three components. The first looked at the carer's knowledge and understanding of schizophrenia (the Knowledge About Schizophrenia Interview (KASI)) (Barrowclough et al, 1987). The second component examined the carer's attitudes towards prescribed medication (the Rating of Medication Influence (ROMI)) (Weiden et al, 1994) and the third was a semi-structured interview.

Semi-structured interviews are useful as they aim to either test a fairly specific hypothesis, or demonstrate a clear and limited phenomenon. They use standardised questions that may be tailored to the individual nature of the person's reply, and thereby capture the unique experience of each interview (Coolican, 1991).

A semi-structured interview was devised in light of the above information with a view to gaining information about carers' experiences of caring for an individual with schizophrenia. The interview explored the following areas:

- Demographic information about the carer and client

- Problems the carer was experiencing with the client

- How the carer was managing these problems

- Why the carer thought these problems were occurring

- The effects the problems were having on the carer

- The carer's experience of working with the mental health team and CPA meetings.

The interviews allowed us to gain a wealth of information about the problems causing concern to individual carers (Table 2) and the causes of the problems and the effects on the carer.

As well as eliciting problems experienced by the carers, the interview also explored the causes of the problems. This part of the interview elicited a wide variety of responses. The client's illness was regarded by carers to be the main cause of the problems they were experiencing. Other problems included:

- Lack of information about the illness, which made knowing how to manage the client difficult

- Difficulty getting the clinical team to focus on non-practical issues, such as the feelings the carers experienced while caring for someone with schizophrenia (which might include anger, guilt, frustration and worry)

- Side-effects of the medication, leading the client to experience adverse symptoms and therefore be more difficult to manage

- Non-compliance with medication, leading to a deterioration in the client's condition and functioning.

The problems and their respected attributes led to a variety of responses by the individual carers; these included making the carer feel:

- Worried/stressed

- Frustrated/angry

- Guilty

- Unsupported.

The concerns reported by carers appeared to be directly related to their level of knowledge about schizophrenia (Barrowclough et al, 1987). Some carers displayed excellent levels of knowledge (Table 3), reported few problems and had good management strategies. Other carers had inadequate knowledge and reported more problems. These findings are supported by earlier research by Barrowclough et al (1987), which demonstrated that giving carers information about schizophrenia and its management is helpful.

The findings of the study indicate a gap in the education of carers regarding schizophrenia and management of the condition. It is hoped that the information gained from the study will prove to be of value in understanding the complex nature of the relationship between a carer's knowledge of schizophrenia and his or her level of contribution to the CPA meetings. The findings would thus help health professionals in understanding and incorporating these concerns into a higher level of care for the client.

Previous work has shown that working with carers reaps substantial benefits but requires considerable time and resources (Mari and Streiner, 1996), which are often not available.

The overwhelming message from the interviews was that carers most valued the time the interviewer was able to give in listening to them and in noting their concerns.

The majority of carers felt that, although a brief interview focusing on the client's progress was important, it was equally important that someone had time to listen to how they were coping and how they felt. A frequent comment from the carers regarding the time spent with them during the interviews, was that they felt more able to discuss their concerns, worries and difficulties communicating at CPA meetings, with someone independent of the client's care.

Many carers viewed CPA meetings as intimidating experiences with limited time in which to communicate; they thought that this time should be used to discuss issues such as client management and medication. They therefore found it very difficult to articulate their own concerns regarding the burden they carried and often felt it was somehow wrong to talk about their own feelings and that doing so showed weakness. They thought it best to create an impression of being able to cope with their relative's illness.

If a higher level of understanding of carers' needs is to be achieved, carers need time and space to discuss their concerns.

This study supports the need for a review of the services offered to carers. Since this project was undertaken, services have been reviewed at the West Middlesex Hospital. Among the changes, carers now have the option of having their own assessment, where their particular problems and needs are discussed. Education and information should be incorporated on an individual basis within the carer's assessment. In some areas professionals are running carer groups, which can incorporate an education or information component. From the experience of this research, however, carers usually prefer a more individualised approach.

One way in which all mental health teams can revise their strategies for carers is to offer them the support of a professional who works directly with the carer, providing care that is independent of that offered to the client. Since this study took place health professionals have been listening more closely to carer's concerns and taking these into account when planning client care.

This approach has obvious financial implications because of the increased level of time spent with carers, and may need consideration at trust level. From the evidence of this small study it would seem that more time should be made available to health professionals to help improve carers' knowledge of schizophrenia and thus their confidence in communicating to the CPA team their concerns regarding themselves and the client.

Health professionals already have an holistic knowledge of clients; having time to work directly with carers would mean that the level of feedback to carers and clients could be enhanced. The care offered would become more co-ordinated.

Living with the symptoms of schizophrenia is just as debilitating for carers as for clients; if health professionals and carers work in partnership, then clients' care is likely to be optimised. This ensures that care meets the aim of allowing more clients to live in the community rather than in long-term hospital care, which, ultimately, will have a long-term effect on resources.

The author would like to acknowledge the assistance of Dr Tom Sensky and Professor Tom Barnes, who oversaw the study discussed in this paper.

Further reading
Fuller, T.E. (2001)Surviving Schizophrenia (4th edn). New York, NY: Harper Collins.

Barrowclough, C., Tarrier, N., Watts, S. et al. (1987) Assessing the functional value of relatives' knowledge about schizophrenia: a preliminary report. British Journal of Psychiatry 151: 1-8.

Biegel, D.E., Song, L., Milligan, S.E. (1995)A comparative analysis of family caregivers' perceived relationships with mental health professionals. Psychiatric Services 46: 477-482.

Coolican, H. (1991)Research Methods and Statistics in Psychology. London: Hodder and Stoughton.

Howe, G. (1995)Working with Schizophrenia: A needs-based approach. London: Jessica Kingsley.

Kavanagh, D.J. (1992)Schizophrenia: An overview and practical handbook. London: Chapman and Hall.

Kuipers, L., Bebbington, P.E. (1985)Relatives as a resource in the management of mental illness. British Journal of Psychiatry 147: 465-471.

Mari, J.J., Streiner, D. (1996)The effects of family intervention for those with schizophrenia. Cochrane Database of Systematic Reviews 3. Oxford: Update Software.

Shepherd, G., Murray, A., Muilen, M. (1995)Perspectives on schizophrenia: a survey of user, family carer and professional views regarding effective care. Journal of Mental Health 403-422.

South West London and St George's Mental Health NHS Trust. (2001)Policy on the Care Programme Approach: Care management and risk assessment and management. London: South West London and St George's Mental Health NHS Trust.

Weiden, P., Rapkin, B., Mott, T. (1994)Rating of Medication Influences (ROMI) scale in schizophrenia. Schizophrenia Bulletin 20: 297-307.

Wray, S.J. (1994)Schizophrenia sufferers and their carers: a survey of understanding of the condition and its treatment and satisfaction with services. Journal of Psychiatric and Mental Health Nursing 1: 115-123.

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