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Addressing Hopelessness

Suicide and Psychosis

Introduction

This article will explore the link between suicide and the initial diagnosis of psychosis, showing how the psychological processes at this stage can lead the individual to a sense of hopelessness and how this can increase their vulnerability to suicide. A case study written by a mother whose son received a diagnosis of Schizophrenia will highlight some of these issues. The article will then offer some examples of how mental health services can helpfully respond.

Initial Diagnosis

Many people with schizophrenia receive their initial diagnosis during their late teenage years. This is a period in the young person’s life when they are often already struggling with the main task of adolescence which is to move from childhood to adulthood. Adolescence can be a particularly difficult time as the young person strives to develop their own identity and independence from parents and social acceptance from their peers (Daniel et al 2000).

If signs of psychosis emerge at this stage, e.g. social withdrawal, mood swings, they may initially be interpreted as “ordinary” features of adolescence. However, these signs may persist and worsen. There is a sense among parents that “all is not right”. It is at this stage that a young person, who understandably will be very frightened and perplexed, will be assessed by a GP. Depending on the GP this could lead to a prompt referral to a psychiatrist, diagnosis and treatment. On the other hand, it might only initiate a series of ‘revolving door’ visits. This can lead to a crisis, for example an episode of self-harm such as an overdose, which then prompts a response to what has been a slow lingering decline of the young person’s mental health.

It is often a very painful and difficult time for the young person when they are diagnosed with a psychotic illness (Jackson and Farmer 1988). The initial diagnosis (first three years from onset) can lead to the loss of previous life goals and career choices and there can also be a loss of friends and social standing. This can lead to feelings of humiliation and shame. Humiliation can also be experienced through a sense of losing control of one’s thinking abilities. This is often accompanied with the shame and fear that society attaches to anyone with mental health difficulties. The sense of never being able to escape this predicament can result in feelings of entrapment and hopelessness (Jackson and Iqtal 2000), where hopelessness is understood as an inability to see any positive future options. Such cognitive processes are often accompanied by depression (Johnstone et al 1986, Gilbert, 1992; Brown et al 1995). Beck (1976) highlighted the link between loss of control, depression and hopelessness, showing how hopelessness is associated with suicide and developing the Hopelessness Scale which has been recognised as one of the most sensitive assessment tools for detecting actual suicidality.

Development of hopelessness and suicidality

For young people experiencing for the first time the symptoms of psychosis the sense of hopelessness can run high. A study by Westermayer et al (1991) found that, of people with Schizophrenia who committed suicide, two thirds did so during the first six years following the initial episode. Mortensen & Juell (1993) found that risk of suicide is considerably increased during the first two to three years after an initial diagnosis.

It is also this initial period which has called the “critical period”, since what happens in this period will affect the long-term trajectory of the illness (Birchwood et al 2000). McGlashan & Fenton (1993) argue that most damage to an individual’s psychological well-being occurs in the early stages of the illness. There is a huge capacity for loss not only in terms of human life but also in terms of human potential. It is these losses which place a requirement on services to be responsive to this “critical” period of early psychosis.

CASE STUDY

Contribution from Carer, Janice Johnson

I am a carer of someone with Schizophrenia. To the rest of the world he is a thirty year old man. I am his mother. To me he is the child I gave birth to and raised with much love and care. To most parents their child

is precious and their child’s welfare constitutes a large part of their own sense of well being. The parent of someone with Schizophrenia feels no differently.

Adolescence is a time of major change in an individuals life. It is very difficult for a parent to detect the development of a serious mental illness. It is rather more an intangible notion that minor changes in behaviour or manners just don’t feel right.

Peter is the middle child in the family, with two older and two younger brothers. Peter was always the quieter, less demanding of the boys. He had a sunny disposition as a child and much of this has carried on into adulthood.

When Peter had left school he wanted to join the construction industry as a bricklayer and started a two year training course. About a year before leaving school he started to go to the gym to weight train. He became quite knowledgeable about sport and fitness, looking after himself physically with regard to diet etc. He was a non smoker at the time and a non drinker. Peter’s choice of career and his conversion to and interest in weight training and sporting activities seemed strange to me and really at odds to the gentler side of his character I knew. I realise that there probably was some internal struggle for identity going on with Peter. At around the age of seventeen he joined the Territorial Army, having been introduced to it by someone, a much older man, he knew through the gym. Clearly Peter was trying to establish his identity. My son started to question what it was to be a man. What sort of qualities should he strive for? Was the gentler, artistic side of his nature something to be repressed? Whilst my son was completing his training course and going to the gym and T.A. weekends he seemed to be coping and developing fairly well. He had routine and structure in his life.

He had an ambition to join The Royal Air Force (R.A.F) and his life seemed to be progressing as he wanted it to. Problems started to become apparent after his training course had finished. He had a period of time to kill before he could join the R.A.F. He felt he was treading water. Peter stopped going to the gym. He hung around for a few months with people he previously would not have chosen as friends and like most teenagers, I suspect that he dabbled in drugs to a degree, but never developed a regular drug habit. He then appeared to become disillusioned with that particular crowd of people and he started to take part in his T.A. activities again and to go to the gym. He was clearly trying to refocus and get his life back together again, but he still appeared troubled and lacking in concentration.

One of the greatest difficulties in the early pre-diagnosis period for parents is recognising whether there is a real problem manifesting itself, or whether the changes we see are simply part of the adolescent process. Also, where do we go for help? The obvious first call ought to be the G.P. Family doctors are not always skilled enough to pick up the subtleties of serious mental illness when it is in the early stages. How can we broach the subject with our adolescent offspring? If our fears are unfounded, what damage could we be doing to our son or daughters perception of themselves? I can recall saying to my husband that I was concerned Peter might be developing a mental illness. His face took on a look of absolute horror at the mere suggestion of such a thing, and an absolute denial of such a prospect from him. For myself, the prospect was also too awful and too unlikely to contemplate, I clung to the hope that the hostility, the changes in habits and routine, the expressing of strange views, were a ‘phase’ which Peter would pass through it and that time and maturity and patience and support on our part would help him negotiate this uncertain time of his life. Yet I had an uneasy feeling that something was wrong. I knew he was unsettled, yet my son would often be his usual self and I would feel reassured and hopeful. Parents often feel responsible for the behaviour of their offspring. There is the notion that parents ultimately have responsibility for their children’s action. When they are small we are expected to have care and control over them. When they are grown, we are expected to have brought them up sufficiently well for them to be law abiding responsible people. We feel we should have equipped them, by example, with a moral and ethical code. When our children act in ways which we know breaches that moral and ethical code, we feel we have failed. And when Peter began to act in erratic and unpredictable ways, I always felt that somehow I was not providing the necessary guidance or boundaries.

Peter had changed, from a relaxed, co-operative and caring son, into a hostile, challenging and troubled person. Some would say, “Not unusual for a teenager”.

It is all too common that an ‘incident’ is the means by which a serious mental illness is discovered. My son was first diagnosed as suffering from acute anxiety. Deeply distressed for a time and seeking comfort of home, family and routine. It was some months later when my Peter was at T.A. camp that the first breakdown occurred. We were told that, increasingly, over the previous week his behaviour had become perplexing and unusual. An example being, lying under a bed at three o’clock in the morning eating biscuits. He started to telephone home in the early hours of the morning, his voice sounding hesitant and his conversation making no sense. His Commanding Officer finally telephoned to express her concerns and Peter was put on the train home. Strangely, as if by homing instinct, negotiating the train transfers to return home.

Peter’s behaviour was clearly now, quite bizarre, with notions of conspiracy and secret coded messages in newspapers. An inability to sleep or eat and he appeared to exist in a complex and isolated world in which we could not join him.

Our G.P. was called and a visit by a Consultant Psychiatrist followed. Peter was with the doctor in our car. Our son lay hidden and crouched on the back seat, terrified that some unseen assassins might see him. I remember that day as one would remember a nightmare.

My husband and I were inconsolable. Until now we had hoped that the ‘phase’ would pass. The overwhelming burden of responsibility had rested wholly on own shoulders. Now at last it could be shared with the professionals we hoped.

Initially we hoped that Peter would receive treatment and be restored to good health and get over this glitch in his life. How naïve we were.

Treatment consisted mainly of drug therapy, with a little group relaxation work and occupational therapy. I do not think Peter felt he could benefit from the occupational therapy. Often it was of a prescribed nature and was not flexible enough to embrace the individual’s own interests and capabilities. Peter was on high doses of very powerful anti-psychotic drugs. These and the illness undermined his ability to concentrate and to think clearly. Time passed and the drug therapy had a beneficial effect on the more positive symptoms. After three months Pete was discharged. Yet he was frightened and confused by what was happening to him and disabled to some extent by the side effects of the drugs. Although he could reclaim 90% of his former personality and the hostility had dissipated, he felt he had been ‘written off’. He was only nineteen at the time. This is the tragedy of Schizophrenia, it can take away peoples lives just as they are beginning. The illness can destroy the lives of families, not just the individual sufferer.

Peter was referred to a rehabilitation service of sorts, where he would spend the day playing bingo and sitting around with former long term psychiatric patients, who had been discharged to ‘Care in The Community’ from the recently closed large psychiatric hospital. Clearly this did not suit Peter’s needs. Apart from a monthly visit from an overworked C.P.N. we received little help, guidance or support. Neither did Peter. The psychological effects of his illness had a dramatic effect on our son’s view of life, of himself and his future. Depression began to set in. He tried to resume some of his former optimism; starting a college course, finding it so difficult to rouse himself in the morning because of the drugs, trying other activities and finding himself not up to it. Not surprisingly, Peter had many relapses. Each time he had to go back into hospital, my husband and if felt as though the bottom had fallen out of our world. It should have got easier with each admission back into hospital, but somehow it hurt us and his brothers unbearably. They were still at school and also had to cope with cruel comments from other school children. They grieved for their brother too, but found it difficult to express.

It was against this background and with his own life plan in tatters and no future on offer, that Peter made his first suicide attempt by taking a large amount of aspirins. When he found out the next morning that his attempt had been unsuccessful he went to the G.P. who called an ambulance.

I was not informed, as was my son’s wish, yet I feel I should have been; being the principle carer, I had information which could have been of help to medical staff, I was the principle component in the ‘care package’ and I was his mother. Surely we should have been helped as a family. It wasn’t one person suffering, but a whole family. Is there a way in which professionals can balance the needs of the family and the confidentiality of the patient?

When I went up to the hospital and was asked why he might want to kill himself, I told them of my son’s diagnosis. I could see immediately a sliding away of interest on the part of the medical staff. Misunderstanding prevails amongst the medical profession too. Peter was admitted to the psychiatric ward, caught in his own nightmare and trying to assess what his life would consist of from now on, as he had received no realistic help in trying to build his life or contemplate an alternative life. From the start we have found it difficult to access help, for our son and for ourselves. We as parents became overwhelmed by the

responsibility and stress of caring. At the time Peter first became ill, the local large psychiatric hospital had recently closed. Services were patchy or non-existent. I understand that things have moved on; that there is more help for young newly diagnosed people suffering their first episode.

Peter made two more suicide attempts. By now our hearts had been put through a mincer. We had tried so hard, we cared for him, shared his suffering. It almost felt like a slap in the face for us, and we did feel a degree of resentment that he could consider hurting us so. Yet he was hurting too, and we knew that. For the first time in my life, I considered the prospect of losing Peter, and contemplated what life would be like if another suicide attempt succeeded. I feel it is likely now. I live with the knowledge that it could happen. I will do all I can to prevent it, but in the final analysis, it is his life, it is the only life he has and this is something that the professionals should remember. My son has one shot at life, no matter how many people they treat there will only ever be one Peter. If everyone working in mental health remembered that their patient’s heart has been broken and those of their family by a twist of fate. How would they view those in their care and how would they change their practice? What we need from our services is respect for us an individuals. Therefore the service needs to be more flexible. We need a service which treats the whole person and does not simply see the patient as a collection of symptoms. The patient and the family have many needs and a far more holistic approach is needed. We need early intervention, good quality hospital accommodation and a service which is properly responsive to the patients needs and doesn’t make us feel it’s our fault if a narrowly applied treatment regime fails.

In the last few years Peter has had the benefit of Cognitive Behavioural Therapy. This has had a significant affect on his coping strategies. Before C.B.T. sometimes if Peter began to feel down or upset about something, he would be unable to prevent himself from being sucked into a downward spiral which could sometimes lead to a relapse. With the intervention of C.B.T. he is better able to regain control of his emotions and prevent himself from being overwhelmed by them. He still occasionally has a few bad days when he is feeling down or copes less well, but he is much more able to understand the process he is going through and the bad feelings do not last as long or are as intense. The good thing about C.B.T. is that it does not go out of the system like medication. C.B.T. alongside responsible use of medication is the way forward as I see it. I found that the attitude of the professionals dealing with our son made a large difference to how he dealt with symptoms and his emotions.

After nine years of care and involvement in my son’s life I began to suffer from depression myself. My experience of depression was experienced in physical terms. I could not eat, sleep, my thought processes had become severely impaired, my level of concentration dropped dramatically. I sought help from an understanding G.P. I was prescribed anti-depressants and received some counselling. Whilst I was ill I could not bear noise, I could not watch television or listen to the radio. I didn’t have enough concentration to read or to work. What remained was an emptiness, and that all those facilities for hope, reason, planning and even the very purpose of existing had drained away. I did not want to kill myself, but I did not want to feel so bad. I simply failed to see, in a logical way, the purpose of human existence. Every moment was unbearably tortuous. Three years on I still have dips. I cannot juggle the many tasks I used to, my memory is not as good as it used to be and I have never managed to regain that capacity to feel joy or excitement. I am however able to live my life again without feeling distressed. I was helped by the care and support of family and friends. Had I been living on my own in a ‘Care In The Community’ flat I might not be here today. One of the spin off’s from the experience of caring for Peter and my own depression, has been a spiritual growth. I am less materialistic and see life as a journey. I am more comfortable with my own mortality and even more able to empathise with my son’s and others emotional pain.

What are the factors which led to our son attempting suicide? The possible reasons were grief at the loss of his life plan, loss of hope. Inappropriate treatment i.e. an over reliance on drug therapy and a tendency for the system to suck people in and deny them power and control over their own life. We need a far more dynamic, robust and responsive system, which deals with the needs of the individual, and supports the families to make sense of these experiences and to equip them to help their son/daughter live with this diagnosis.

Lessons from the Case-Study

This case-study illustrates the profound effect a diagnosis of schizophrenia can have on an individual and their family, including the development of hopelessness both in the patient and the carer.

In recent years services have been designed which work collaboratively with families and service users, aiming to provide flexible, focused care which can equip the individual and their families with the knowledge and support needed for living with psychosis, but further work is needed to make these services available nationwide rather than remaining as pockets of clinical excellence that exist in a few regions.

How to respond to hopelessness associated with psychosis

The evidence base for the use of interventions such as CBT in relation to first episode schizophrenia needs to be developed further (Turkington et al 2003). Some clinicians claim that early intervention services in general are an unjustifiable expense without a strong enough evidence base to support their use, while others argue that an evidence base is emerging which demonstrates the efficacy of those approaches, only limited by the fact that this work is still relatively new and needs time for further development (Birchwood et al 2000). Recently, the research literature has begun to provide further confirmation of the need to address the link between hopelessness and suicidality through the development of therapeutic relationships and attention to cognitive functioning (eg Collins and Cutcliffe 2003).

The National Institute for Clinical Effectiveness (NICE) has published guidelines on the core interventions in the treatment and management of schizophrenia in primary and secondary care (NICE 2000). While endorsing the need for further research to evaluate the use of CBT in people experiencing a first episode of schizophrenia, the guidelines also recommend that early intervention services are developed, and provide the following “good practice points”:

1. Early intervention services should provide the correct mix of

specialist, psychological, social and occupational and educational

interventions at the earliest opportunity

2. The oral atypical anti-psychotic drugs Amisulpride, Olanzapine, Quetiapine, Risperidone and Zotepine are the first choice of medication for individuals with newly diagnosed schizophrenia.

3. Clinical audit should record whether individuals receive care and treatment which adheres to the NICE guidelines.

The following proposals would support the implementation of these NICE recommendations and address many of the issues raised in this chapter:

· Every mental health service should develop early intervention services which aim to reduce the duration of untreated psychosis in order to reduce future residual symptomatology (McGorry 1998).

· Staff could develop a clinical care pathway which clearly outlines how people with a recent diagnosis will receive interventions which reduce hopelessness and enhance their ability to live with the diagnosis.

· Any assessments carried out on people who received a diagnosis of psychosis in the previous three years should include information on when the person received this diagnosis, what are their own views on having this diagnosis. This information could then be used to indicate when the use of the clinical care pathway is applicable.

· The clinical care pathway should also include what support systems will be offered to families and/or carers (Linszon & Birchwood 2000).

· All mental health practitioners including health care assistants should receive awareness training which enables them as practitioners to understand the link between diagnosis and hopelessness. Practitioners should also receive training on how to assess hopelessness.

· Every mental health service should have available practitioners who have been trained to an advanced level of Cognitive Behaviour Therapy (CBT). These practitioners would then be able to, via use of a care pathway, receive referrals for people and their families. These practitioners can then use the CBT approach to reduce hopelessness often associated with the diagnosis of a psychotic illness.

· GP and other primary care agencies should receive awareness training which enables them to recognise links between hopelessness and diagnosis. G.P’s should also receive support and information on what services are available for people recently diagnosed and their families.

· Early Intervention Services should include family support groups. This could decrease isolation and increase awareness of resources available.

Conclusion

The onset of psychosis is a profoundly life-changing experience for both the individual and often their families. It is what happens during this “critical” phase of psychosis that will often determine whether an individual will commit suicide, develop on-going residual psychotic symptoms, have on-going sense of hopelessness and huge loss of potential. Through providing comprehensive early intervention services which include family support, the consequences of psychosis can be rendered less distressing and debilitating. Instead it can be possible to give the individual and family an understanding of their experience and empower them to recover, to take back control over their mental health and to regain their potential.

The case-study in this article demonstrates the human pain and despair that the individual and their family can experience if such services are not in place. As mental health professionals we must learn from the experiences of families such as this and aim to provide early interventions for all those in the first stages of psychosis.

Reference list

Beck, A.T. (1976). Cognitive therapy and the emotional disorders. International Universities Press, New York

Birchwood M., Fowler, D., and Jackson, C. (2000). Early Intervention in Psychosis: A Guide to Concepts, Evidence and Interventions. Chichester Wiley.

Brown, G.W., Harris, T.O. (Hepworth, C, (1995), Loss, humiliation and entrapment among women developing depression: a patient and non-patient comparison. Psychological Medicine, 25, 7-21.

Cutcliffe J. R. and Collins C. (2003) Addressing hopelessness in people with suicidal ideation: building upon the therapeutic relationship utilizing a cognitive behavioural approach. Journal of Psychiatric and Mental Health Nursing, 10 (2) 175-186.

Daniel, B:, Wassell, S.& Gilligan, R, (2000). Child Development for Child Care and Protection Workers, Jessica Kingsley Publishers.

Drake, R., Gates, C., Cotton, D, & Whittaker, A. (1985), Suicide among schizophrenics: Who is at risk? Journal of Nervous and Mental Disease, 172, 613-617

Edwards, J., McGorry, P.D., & Pennell, K. (2000), Models of Early Intervention in Psychosis: an Analysis of Service Approaches, In: Birchwood, M., Fowler, D. & Jackson, C. (eds) (2000). Early Intervention in Psychosis: A Guide to Concepts, Evidence and Interventions, Chichester: Wiley

Gilbert, P. (1992), Depression: The Evolution of Powerlessness, Hove, Sussex: Erlbaum.

Jackson, C & Farmer, A. (1998), Early Intervention in Psychosis. Journal of Mental Health, 7, 157-164.

Jackson, C. & Iqbal, Z. (2000). Psychological Adjustment to Early Psychos. In: Birchwood, M., Fowler, D, & Jackson, C, (eds) (2000), Early Intervention in Psychosis: A Guide to Concepts, Evidence & Interventions, Chichester: Wiley.

Johnstone, E., Crow., T. Johnson, A. & MacMillan, J, (1986), The Northwich Part study of first episode schizophrenia: Presentation of the illness and problems relating to admission, British Journal of Psychiatry, 148, 115-120.

Linszen, D & Birchwood, M, (2000). The early Phase of Psychosis and Schizophrenia: a Critical Period for Patients, Families and the Profession. In: Birchwood, M., Fowler, D., & Jackson, C. (eds) (2000), Early Intervention in Psychosis: A Guide to Concepts, Evidence and Interventions, Chichester Wiley.

McGlashan, T.& Fenton, W, (1993). Sub type, progression and pathophysiological deterioration in early Schizophrenia. Schizophrenia Bulletin, 19, 71-84.

McGorry, P. (1998). Preventative strategies in early psychosis: Verging on reality. British Journal of Psychiatry, 172, 1-2.

Mortenson, D, & Juell, K, (1993), Mortality and causes of death in first admitted schizophrenic patients. British Journal of Psychiatry, 163, 183-189.

National Service Framework for Mental Health (1999). Modern Standards and Service Models . Department of Health, London.

National Institute for Clinical Excellence (NICE) 2002: Clinical Guidelines and recommendations for treatment of Schizophrenia, Department of Health, London.

Westmayer, I.J., Harrow, M, & Marengo, J. (1991). Risk of suicide in schizophrenia and other psychotic and non psychotic disorders. Journal of Nervous and Mental Disease, 179, 259-266

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