Self Management & Schizophrenia

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I came across the following article in my various wanderings and thought it served as an excellent introduction to individuals who have received a diagnosis of schizophrenia or psychosis and their caregivers.

What I thought was most rewarding about this article was that it allowed individuals to represent their own views and it presented a diverse range of concerns and behaviors -- everything from finding meaning in their experience to working with caregivers to practical considerations.

I've included a few introductory remarks and a brief excerpt from the opening. Those who wish to read the full article should click on the links at the end of the post.

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<font size=4>The Experiences and Views of Self-Management
of People With a Schizophrenia Diagnosis</font>

<blockquote>- Contents -[*] Introduction [*] What is self-management – participants’ views [*] How participants are affected by schizophrenia [*] Self-management in the lives of participants [*] What might a self-management project look like? [*] Conclusions [*] Afterword: participants’ feedback on the initial report</blockquote>

<font size=4>Introduction:</font>
This is an initial report of some research carried out into people’s experiences of self-management and their ideas for a self-management project. Forty-eight people with a diagnosis of schizophrenia took part in the research, offering their accounts in one-to-one interviews, in discussion groups and in writing.

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This research is intended to inform the creation of a Self-Management Project which will enhance the lives of people with a schizophrenia diagnosis.

<font size=4>What is self-management? – participants’ views</font>
It was important to agree a working definition of self-management at the outset of each interview, discussion group or questionnaire, in order to ensure that the participants and the researcher were talking about the same thing. The following working definition was used as the basis for the discussion.

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1 Working definition of self-management

‘Self-management is something we all do. It is whatever we do to make the most of our lives by coping with our difficulties and making the most of what we have. Applied specifically to people with a schizophrenia diagnosis, it includes the ways we cope with, or manage, or minimize, the ways the condition limits our lives, as well as what we do to thrive, to feel happy and fulfilled, to make the most of our lives despite the condition.’

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Interviewees were asked an open question about what they thought self-management was, before being presented with the working definition. In the questionnaire and the discussion groups the working definition was given first, and participants asked to comment on it. In almost all cases the participant’s understanding of self-management was in line with the working definition. A small number of people defined self-management more narrowly as specifically about avoiding or minimizing mental health crises. Recognizing and acting on danger signals. But most saw it as covering different aspects of life, or life as a whole. One participant wrote:

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Self-management entails both a positive mental attitude ... and positive actions that help you get on with living your life the way you want to. [It] includes knowing when to recognize the illness limitations and adjusting your way of life to accommodate them ... adjusting to the perceptual and physical changes ... and living your life to the full. ... The more you live your life and achieve goals, no matter how big or small, that is active self-management.


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Some participants would have differed in their use of the word ‘illness’ without disagreeing with the basic sentiment.

<font size=4>How participants are affected by schizophrenia</font>
It was important to give participants the space to identify what their individual experience was and what issues they had to address, rather than approach them with a stereotyped view of schizophrenia. In this spirit, participants were also invited to say what were the positive effects of schizophrenia. There was a wide variety of answers to this question, and it would be [im]possible to write at length about the different experiences that people have which lead to the diagnosis of schizophrenia. I have needed to concentrate on the self-management aspects of people’s responses, and so this chapter is a very brief summary of the responses to this question.

Negative effects
Many people described hearing voices, seeing visions, experiencing hallucinations in other senses (touch, smell, etc.), or having periods when they held unusual beliefs. Others focussed on the distress of hospital admissions and the side effects of medication. Others emphasized the social and personal effects, particularly the difficulty relating to others, the loss of confidence. A number spoke of their education being disrupted or losing their jobs or careers. Some lost marriages and homes. Others spoke of the stigma and the sometimes thoughtless, sometimes cruel, reactions of other people.

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For all the difficulty and pain of their condition at its worst, all but one or two of the participants in the research were reporting successful self-management in some or most areas of their lives.

Positive effects
What is also interesting is that a number of people stressed that there were positive aspects to their condition. The person who wrote the above list of negative effects also wrote “Very creative – more understanding.” The creativity of the schizophrenic style of thinking emerged a number of times. One person “commanded” his “demons” to write music. Another wrote of, “Being able to use negative thinking in a positive manner eg use in art”. In a similar vein another participant described the positive side of her state of mind as, “Having a feeling for sounds of words and seeing puns in what people say – loving music and feeling at one with nature and the universe – being strongly affected by beauty in a positive way”. Other people saw a positive outcome from their struggle to live a life with the condition. One person thought he was, “a much better person for having suffered ... and ... many facets of my personality have developed as a result”. Another wrote that, “the struggle for self-management has been life-affirming. I feel that I have become a mentally stronger and even better person.” She shares with many others the positive influence of other ‘service users’ when she writes “the efforts and achievements of other service users has been inspirational and has given me hope and strength”.

I have dwelt at some length on the positive aspects that people have identified – and there are more that I have not mentioned – not in order to lessen the real suffering and difficulty that people have spoken of, but because this seems to be of the essence of self-management – finding the positives and making the most of them.

<font size=4>Self-management in the lives of participants</font>
This section reports the responses of participants to the central questions of the research, the questions regarding how they used self-management, and what helped them self-manage. Analysis of their responses revealed common themes which were organized under a few headings. These headings and themes are used as the basis for this section. They are summarized in the box below.

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Self-management in the lives of participants – common themes

1.0 Maintaining morale, finding meaning
1.1 Personal qualities, attitudes and beliefs
1.2 Exploring and understanding your experience
1.3 Religion and spirituality

2.0 Relationships with other people
2.1 Contribution of other people
2.2 Family and friends
2.3 Other ‘users’ and the ‘user movement’
2.4 Mental health and other practitioners
2.5 Colleagues and community

3.0 An ordinary life: coping
3.1 Basic living skills
3.2 Healthy living
3.3 Personal self-management
3.4 Interpersonal self-management
3.5 Emotional self-management

4.0 An (extra)ordinary life: thriving
4.1 Occupation
4.2 Recreation
4.3 Social life

5.0 Managing ‘having schizophrenia’
5.1 Information / education
5.2 Managing medication
5.3 Managing relationships with healthcare workers
5.4 Relapse management
5.5 Symptom management
5.6 Talking therapies
5.7 Complementary therapies


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