Hospital Psiquiátrico São Pedro and Faculty of Health Sciences, Rede Metodista de Educacão, Brazil
Royal Free and University College Medical School, London, UK
Correspondence: Professor Michael King, Royal Free and University College Medical School, Royal Free Campus, Rowland Hill Street, London NW3 2PF, UK. Tel: ++444 (0)20 7830 2397; fax: +44 (0)20 7830 2808; e-mail: m.king{at}medsch.ucl.ac.uk
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ABSTRACT |
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Aims To examine the perceptions of users and formal and informal carers of the needs of people with non-affective psychosis.
Method A qualitative study was conducted involving focus groups of service users and informal and formal carers in a major Brazilian city.
Results Existential needs were the most important theme for people with psychotic disorders. Informal and formal carers mainly regarded such needs as secondary to needs for health, housing, leisure and work. Carers usually reduced the existential questioning of the ill person to symptoms or the result of a privation such as lack or failure of medication and its consequences.
Conclusions We require an approach to service users wherein respect and understanding are prized as the first needs from which all others will naturally follow. We also need to give greater priority to existential issues in validated schedules that measure needs in clinical work and research.
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INTRODUCTION |
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METHOD |
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Participants
We recruited three samples:
Focus groups
In March 2002 we conducted four focus group sessions with people with
psychotic disorders, two with informal carers and two with mental health
professionals. Each group contained six to eight participants. Of those
approached, 24 of 35 people with psychotic disorders, 16 of 28 informal carers
and 17 of 20 professionals agreed to participate. We recruited participants
from mental health and primary care services, as well as from associations for
people with schizophrenia.
Conduct of the focus groups
Each group was facilitated by a psychiatrist who held a checklist of themes
as a guide to the group discussion.
An observer assisted the facilitator, made notes and operated the tape recorder. The meetings lasted an average of 90 min and took place in a comfortable and neutral environment distant from mental health services. The audiotape recordings of the group were transcribed.
Coding, analysis and interpretation of the data
After full discussion and review of the literature on people's needs for
care and stigma related to psychotic disorders, we defined a tree of
categories. After reading the transcripts several times, we found the initial
tree was insufficient to cover all the information arising from the
transcripts. New categories emerged during this inductive process, most of
which concerned existential needs. A further coding process was then started,
in which all the text segments coded as existential needs were considered in
detail again, in order to refine and classify them into sub-categories. We
then undertook a content analysis of the transcripts in order to produce an
objective and systematic description of the participants' speech
(Bauer & Gaskell, 2000; Gil-García et al,
2002). To increase the reliability of the coding and analysis,
segments of the transcripts were coded individually by the investigators,
using the tree of categories elaborated, and compared later. Discrepancies in
coding were discussed and resolved by consensus. Coded data were organised
using QSR NUD*IST 4, a computer software package for qualitative
data (Gil-García et al,
2002). Only data on existential needs are reported here.
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RESULTS |
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Need for personal development
These issues concerned needs for a task in life, not in the concrete sense
of providing an occupation to fill the day but rather in the context of
motivation, ability and self-respect. Although loss of motivation frequently
arose as an issue, carers associated it with service users' lack of interest
and concentration. Service users felt they could not work or study because
they were moored and motionless. Many felt they
had regressed in their life course and perceived the illness as a malign
obstacle to their personal development:
"This illness delayed me... I am thirty years old and many things I wanted to carry through I did not obtain because of the illness... I would like to work, to have a career, to be independent' (E., 29-year-old service user).
Hallucinations and other symptoms disturbed their performance and they took more time to initiate and to finish tasks, no longer played the same part in life, felt useless and sometimes wished to die. Some were tormented by doubts that they were competent enough to accomplish ordinary tasks. They feared facing difficulties and lacked the initiative to react to the problems of life. Feeling diminished, they were unable to support themselves financially. Some believed this came about because their informal carers did not trust their capacity. This frustration most clearly emerged in their beliefs that all the friends of their youth had careers, partners and children, whereas they were arrested in time and had accomplished nothing useful. They would have liked to have had a professional identity, but many complained they did not have enough energy to support the same workload as the others:
I would like to be somebody in life (D., 26-year-old service user).I would like to have a good wage, a house, children... but I'm always tired, without disposition to work... if I didn't have this illness, I could be a doctor (C., 30-year-old service user).
Not all service users, however, were despairing. They talked about the importance of being useful and taking responsibility as a way of gaining respect from others and feeling worthy. A number talked of the importance to keep fighting and the need to survive, despite the disorder and its limitations. In contrast, many carers spoke of patients' lack of a sense of reality and that their ambitions often ran beyond their capabilities. They regarded them as lacking concrete objectives and having difficulty in finding meaning for their existence:
He has will, plans to retake his life, but he doesn't know how to do that (M., 56-year-old informal carer).
Some commented on concrete needs such as the chance to work in a tolerant, protective and stimulating environment, without recognising that for many service users this was regarded as patronising.
Need for integrity of the self
Many service users were shaken at the unexpected nature of their illness
and felt that their brains were now disorganised, which generated a fear of
losing self-control, becoming crazy and attacking others. They
described their brains as blocked and as if everything had
disappeared. Many reported feeling lost in time and space. These sensations
were connected to hopelessness, depression and a wish to die:
As if I was seated in an electric chair (D., 23-year-old service user).I've lost concentration... it seems I'm floating, my mind is becoming vacant, empty. This scares me (A., 29-year-old service user).
Many service users perceived the illness as a concrete thing, distinct from their being. Something bad and inexplicable had occurred within their bodies that needed to be extirpated but they did not know how. Some had difficulty understanding the meaning of their thoughts and the views of people around them; as a result, they refrained from saying what they thought because of a fear of offending or seeming inadequate.
Many service users spoke of the intense suffering that resulted from the feeling that their physical and emotional integrity was under constant threat. Some complained that their family and doctors appeared not to understand and interpreted everything as a symptom. They felt they had no escape and no one to whom they might appeal. Everything was regarded by others as madness and not as a genuine threat to their sense of identity and humanness:
They always find that I am sick, they don't value me as a person, but as a patient (E., 30-year-old service user).
Need to win respect and avoid shame
The majority of service users had experienced the anguish of
discrimination, which had made them seek to be invisible. However, they also
craved respect and a desire not to be stigmatised. They were aware that
prejudice arose internally when they judged themselves as useless, incapable
or insane. They wanted to be accepted and understood as they were. Almost all
were reluctant to discuss having schizophrenia, for fear of being seen as
wild and being rejected. They frequently believed that people
around them held very negative images of schizophrenia and regarded people
with this disorder as subject to aggressive and uncontrolled impulses. Thus,
many feared losing their autonomy and human rights. Some believed that people
actively desired their disgrace. Others simply felt they were a nuisance to
others:
I feel myself rejected, banished... by my parents... my sister is the only one who understands me. (J.-F., 42-year-old service user).
Many had encountered difficulties finding work, or had been dismissed and lost all their rights as workers when the psychosis began. This generated discouragement and a lack of will to continue. As a result, some preferred to withdraw from social contact. They had become confused about what to do and how to proceed. They felt ashamed and diminished. Some commented on the need to control their sense of shame and anger and respond appropriately when they were discriminated against:
I was called insane many times... and I had a paranoia about catching and beating these people... but God didn't want that and I controlled myself (D., 28-year-old service user).
On the other hand, many expressed the need to find positive ways of dealing with prejudice. Continuing their struggle against intolerance was regarded as a fundamental response to their illness. Others stressed that not everybody rejected them. They highlighted the importance of their family and professionals as agents of change, who promoted tolerance and gave greater support. Several had rediscovered a reason for living in group therapy, where they found friends with whom they could share their joys and sufferings and feel accepted and comforted.
Need for autonomy
The gap between their need for independence and the difficulty of achieving
it was one of the most important conflicts for people with psychotic
disorders. Many wanted to be free to take decisions, to go and to come as they
pleased and be able to take care of themselves. However, their illness limited
their capacity for autonomy and led to feelings of dependency and weakness.
Although they recognised that their informal carers supported and encouraged
their daytime activities, they also believed that carers reduced their
autonomy by assuming that they were limited and by lacking trust in their
capacity. Many complained that they lacked privacy and felt
invaded by the observations of others, who did not respect their
decisions or choices. This generated the sensation of being
anchored, imprisoned and permanently watched by the family.
Need for love
Many patients reported difficulty expressing feelings and that their
illness and its treatment had reduced their ability to relate to others as
friends or sexual partners. When the disorder began, friends, family and
partners had often grown more distant, causing great suffering. Many patients
expressed a need to marry and have their own family and children. However they
often perceived others as indifferent or averse to them and that nobody
wanted to have a relationship with a schizophrenic. The majority of
patients taking part in the focus groups were single and lived with their
parents. Many appeared to have better relationships with strangers than with
their informal carers. They expressed ambivalent emotions towards their
families and had difficulty accepting limits on their own behaviour, as well
as the subsequent guilt and sadness when things went wrong. They dreaded
losing the support of those on whom they most depended when they were verbally
or physically aggressive. Many feared becoming more lonely and isolated if
their informal carer died or moved away. On the other hand, some would have
liked to live alone and not with their family, with whom they did not have a
good relationship. They believed that their family's expectation that they
would be aggressive actually provoked their violent behaviour. Although many
regarded the support of family and friends as a reason to continue living and
facing their disorder, they felt criticised and subject to continuously
negative evaluation.
Need for acceptance and understanding of the psychosis
Accepting their illness, regardless of whether it had any
meaning, was an important existential need. Many people with
psychotic disorder had experienced revulsion and dismay when they discovered
that they had the disorder, and many did not accept the diagnosis:
That destroyed me and I thought "no! I don't have this... I'm not going to take this treatment". (D., 28-year-old service user).
Others talked of their anger with their doctors who they believed had provided insufficient information or who for a considerable time had spoken only of a problem of the nerves. Although for some patients unfamiliarity with (or delayed recognition of) the illness was associated with denial and a means of escaping the truth, many also felt that adequate information on the nature of schizophrenia helped them question their symptoms, challenge them and progress. Group therapy, in which they had exchanged experiences with other people with the same problem, had increased their understanding of the illness, made it possible to accept it and increased their self-esteem. Some patients commented on the need to search out information on schizophrenia for themselves, instead of waiting for it to be provided. They wanted to reflect on themselves and what had happened since the disease began. They recognised a need to learn to live with the illness, to recognise they had limitations, but also that they were capable of achieving much in life:
Since I started to search information on my disease, listen to the radio and read in the papers about it, I've reacted better (L., 41-year-old service user).
Some commented that every person has their time and that self-acceptance can take much time. Unfortunately, however, many also commented on their desperation that, despite having received treatment and knowing all about their illness, they kept feeling that people rejected them and treated them harshly.
Need for spirituality
A small number of service users - and no carers - talked about a need for
faith. By that, they meant that they hoped that God would help doctors to find
a cure for the disorder, help their family and improve their life. They spoke
of the need to forget the bad experiences of the past and to face the illness
with faith in a better future.
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DISCUSSION |
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Limitations
The study involved service users from one country only and was restricted
to those who were able to express themselves. It is possible to regard some of
what we call existential needs as manifestations of
schizophrenia's negative symptoms, which reduce an individual's capacity for
investment in daily tasks and limit the possibility of personal development.
However, in so doing we are in danger of making the same reductionist
interpretation as their informal and formal carers. Improved medical
treatments for these symptoms help service users to achieve a meaningful
existence and diminish the criticism of those closest to them, but this does
not reduce the reality, complexity or meaning of these existential needs.
Existential needs and personal development
In his theory of human development, Maslow
(1954) described
higher human needs for personal growth. At the lower level of a
presumed hierarchy, so-called basic needs for safety, food and shelter
required fulfilment before higher levels concerning effective social
interactions and a sense of meaning and self-worth. However, our data revealed
exactly the opposite. Although often materially impoverished and lacking in
basic needs, the overriding issue for patients was dissatisfaction with their
existence and a lack of meaning. Needs for personal development, autonomy,
acceptance and respect, love and identity dominated the discussion in all
service user groups. Frankl
(1979) has also highlighted
this objection to Maslow's theory, arguing that when the lowest needs are not
satisfied, the desire for meaning can become the most urgent need of all.
These transcripts suggested that, even in the face of serious financial and
health difficulties, service users had found the courage to face their illness
when the love of family and friends gave them reason to keep living.
Schizophrenia appears to have a worse prognosis in high-income countries
(World Health Organization,
1973; Jablensky et
al, 1992; Leff et
al, 1992), despite better standards of living and provision
of health services. Explanations for this difference have been found in
socio-cultural differences between countries, such as greater social tolerance
and lesser competitiveness in low-income countries. On the other hand,
alternative resources such as protected jobs are scarce in low-income
countries. In Pôrto Alegre there is only one protected workshop with 25
places for a population with schizophrenia estimated at around 10 000 people
(Busnello et al,
1992). Many service users emphasised their feelings of
uselessness, and merely providing low-level, supportive work opportunities or
social security will not necessarily assuage this need, which is related to
the person's role in the world. Self-stigmatising attitudes are often seen in
marginalised groups and can be an important component of their sense of shame
(Hayward & Bright, 1997). The meaning of illness, loss of self-respect and shame may be more important
in determining health outcomes than any other aspect of human life
(Marmot, 2003).
Talking to patients
People with schizophrenia may frequently wish to discuss their subjective
experiences with their clinicians, but such themes are thought to be
irrelevant (McCabe et al,
2002; Van Meer,
2003) or as surface manifestations of underlying neurological
disturbance and of no interest in themselves. This limited approach disregards
service users' existential distress and may prevent satisfactory relationships
with their mental health professionals. What is traditionally seen by
professionals to be the result of symptoms is seen by service users as an
irreparable and painful loss of the capacity to be and to live
normally in the world. An awareness by formal and informal
carers of service users' perspectives may begin to diminish their anxiety and
improve their self-image. Offering service user-centred skills, education,
counselling or more structured forms of therapy such as cognitive-behavioural
therapy will increase treatment compliance, improve satisfaction, decrease
emotional distress and reduce symptoms
(Morrison, 1998; Paley & Shapiro, 2002).
However, our data suggest that professionals' respect for and preparedness to
listen to service users are prized over other needs.
Need for meaning
Expressions of emotional pain and a wish to die appeared constantly in the
service users' transcripts. Why continue to live if there is little love, few
goals to pursue, persistent feelings of stigma, a lack of professional
fulfilment, dependence on others and rejection of one's own subjective
experiences as worthy of respect? Satisfaction of the need for
self-understanding, however, also depends on the individual's autonomy and
personal capacity to fix goals and participate in social relationships. Some
of the patients interviewed affirmed the importance of searching for
information on the disease and of talking and reflecting about oneself and
what has happened in one's life. Unfortunately, people with psychotic
disorders may feel the need to be independent but do not consider themselves
able to achieve it, and consequently suffer deeply
(Wallace et al,
2000).
Meaning and outcome
We might understand more about human motivation and adaptation in the face
of personal crisis if we examined how people with schizophrenia find meaning
in their lives. Social isolation and poverty of social relationships are
associated with worse social and clinical prognosis for people with
schizophrenia (Leff et al,
1992). Relapse is linked to high levels of expressed emotions by a
family member, defined as critical, hostile or emotional over-involvement
(Leff et al, 1990;
Kavanagh, 1992;
Wuerker et al, 2001).
Most people with psychotic disorder report they are rejected and discriminated
against both inside and outside the family
(Crisp et al, 2000;
Dinos et al, 2004).
Meeting the needs for love, acceptance and avoidance of shame is one of the
most important factors involved in the evolution of mental health disorders
and their response to treatment (Tantum,
2002).
Implications for care and research
Too often, mental health professionals look upon their service users as
less than fully human and do not listen to their stories. We need to give
greater priority to existential issues in validated schedules that measure
needs in clinical work and research. Finally, we intend to replicate this
analysis in the data from all collaborating countries in this project. We
expect to find the same core of existential needs, which by definition should
not vary by culture to any significant degree.
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Clinical Implications and Limitations |
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LIMITATIONS
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ACKNOWLEDGMENTS |
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REFERENCES |
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Received for publication November 11, 2003. Revision received August 6, 2004. Accepted for publication August 11, 2004.
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