Hand Book of Evaluation

8/6/2019 Hand Book of Evaluation

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HANDBOOK FOR THE EVALUATION

OF THE

QUALITY OF LIFE IN THE SCHIZOPHRENIC

Department of Psychiatry

Clinical care service.

Chainama Hills College Hospital

Board of Management LUSAKA/ZAMBIA

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Acknowledgement

We are grateful to the following persons for their various

contributions:

Dr M. Zulu, Executive Director - Chainama Hills College

Hospital Board of Management (CHCHBM), Lusaka -Zambia, for her motherly heart with which she has been

attending to our various problems,

Dr P.C. Msoni, Consultant Psychiatrist -Director Clinical

Care, Chainama Hills College Hospital Board of

Management, for his cheerfulness, friendship andunderstanding,

Pr Haworth, for his moral support as a good family father,

Pr Kinsala Ya Bassy - Neuropsychiatrist, Head of

Psychiatric Department, University of Kinshasa, for hisvaluable scientific contribution to this work,

Mampinda Voltaire, Senior Customs Expert-COMESA and

Ankiba Nestor - Fuels & Lead Country Manager

EXXOMOBIL for their logistical support,

Dr Yassa Consultant Dermatologist - University Teaching

Hospital, Lusaka - Zambia, Dr Sheik- Registrar, CHCHBM,

Mr. Abraham Mulenga, Clinical Officer, CHCHBM and Dr

Tchikara Consultant Psychiatrist - Parirenyatwa Hospital,

Harare-Zimbabwe, for having facilitated and created in

various ways an enabling environment for my work,

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We would also like to extend our gratitude to all the nurses,

clinical officers and general workers ofCHCHBM for their various contributions to the realization of

this piece of work.

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The Authors

Dr J.Kaswa KASIAMA (MD)

Senior Lecturer, secretary of the department of Psychiatry, in

charge of teaching,

Neuropsychiatrist

University of KinshasaFormer Deputy Director, Neuro-Psycho-Pathological Center -

University of Kinshasa D.R.C.

Senior Registrar - Chainama Hills College Hospital Board of

Management

Department of Psychiatry, Lusaka - Zambia

Kawele Allan

Bsc Comp. Sc., MA Leadership and Org. Mgt., MCSE, CCAILecturer- ICT

Katanga Methodist University,Evelyn Hone College,

UNZA-Cisco Centre

Lusaka-Zambia

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Pr. S. Mampunza Ma Miezi (MD)

Former Director, C.N.P.P., University of Kinshasa D.R.C

Professeur AgrgNeuropsychiatrist

Facult de mdecine - Universit de Kinshasa R.D.C.

Dr. Kaswa Kayomo M. (MD)

Clinical

Mycobacteriology Laboratory,

David Axeirod Institute

Albany, NY 121208

Science in the Pursuit of HealthUSA

Pr. Odimba BwanaFwambaKoshe E.,

MD MPH MGS MSC PHD of Paris,

Ordinary Professor, Former Dean School of Medicine Unilu D.R.C.

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Consultant Surgeon / University Teaching Hospital, Lusaka -

Zambia

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Foreword

Chainama Hills College Hospital Board of Management:

A third level psychiatric hospital, which has the mandate toProvide:

- quality mental health services,

- training of primary health care providers

- impacting clinical psychiatric acumen to students from

health colleges and the university of Zambia,

- conducting research.The hospital was built in 1961 with the bed capacity of 260

patients.

It was officially opened on the 20th June 1962

It consists of six wards, including a fee-paying ward.(A

ward), B and C wards as acute admission wards, E and F

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wards as rehabilitation wards male and female and children

respectively and L ward for forensic patients, Chainama east

in 1967,built to admit medical forensic patients.Since 1968 the hospital had a bed capacity of 500 patients.

Suffering due to chronic diseases is often associated to real-

life experience, that feeling that the patient has of loosingcontrol over his own life, a feeling that is often strengthened

by the fact that the entourage and the physicians do not take

his personal impressions into account.

Indeed, the latters pay attention to clinical signs and

symptoms, whereas for the patient, leisure, joys of life andactivities come first. Moreover, he complains about his

therapist who ignores his subjective experiences, which are

yet at the base of decisions concerning his treatment; a

breakdown can be brought about by the divergence betweenthe clinician and the patients expectations.

The evaluation of the quality of life of the schizophrenic

(EQLS) patient is a complete self-evaluation measure made to

give a review of the aspects of the quality of life relating to

health affected by schizophrenia.

Hopefully this handbook will serve as reference for the levelof quality of life of the schizophrenic patients in our

psychiatry department.

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The handbook includes the following points:

Problems and objectives

SchizophreniaDevelopment of the evaluation scale of the quality of life

Psychometric comparison of instruments

Constructing the questionnaire

Evaluation scale of the quality of life of the schizophrenic

(EQLS)Scoring formula

Handbook for the investigator

Conditions of administration

Dr SHEIK M.D.

Chainama Hills College Hospital Board of Management

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TABLE OF CONTENTS

ACKNOWLEDGEMENT.3

THE AUTHORS5

FOREWORD.9

PagesCHAPTER I: Problems and objectives.......

. 17

The problem 18

Real-life experience and quality of life.. 20

What are we looking for?....... 23

Objectives... 24

CHAPTER II : Schizophrenia .... 27

Target population ... .. 28

Epidemiological definition. 29Taking charge of medical care 31

CHAPTER III : Development of the evaluation

of the quality of life 33

Quality of life in schizophrenia.... 34

Specific instruments ........ 36

Properties to be observed..... 37

CHAPTER IV : Psychometric comparison 45

Choice..... 46

Psychometric comparison of instruments... 49

CHAPTER V : Constructing the questionnaire.. . 51

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Stage I: Conception of the questionnaire.. 53

Stage II: Constructing the questionnaire...... 57

Stage III: Forming an evaluation scale of thequality of life of the schizophrenic........... 58

CHAPTER VI : Evaluation scale of the quality

of life of theschizophrenic(EQLS)..... 59

Health.... 61Psychic symptoms ....... 61

Self-esteem / well-being.. 62

Relation with family..... 63

Social and love relationships .. 64

Leisure / creativity 64

Participation in community life ....... 65Religion. 68

Financial situation..... 67

Living conditions . 68

Autonomy.... 69

CHAPTER VII : Scoring formula............. 71For an item... 72

For a field... 72

For a scale. 73

CHAPTER VIII : The interviewershandbook.. 75

Age ....... 76

Sex........ 76

Residence in Zambia (province).. 76

Ethnic groups.... 77

Real-life experience and report. 79

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Stabilisation and report ........ 80

Typical questions . 81

CHAPTER IX : Condition of administration 83

The patients consent ........... 84

Enlightened free consentement... 84

Precautions to be taken ... 84

REFERENCES.. 87

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ZAMBI ETHNIC GROUPS

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- The problem- Real-life experience and quality of life

- What are we looking for?

- Objectives

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PROBLEMS ANDOBJECTIVES


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CHAPTER I: PROBLEMS AND OBJECTIVES

The problem

During the last 50 years, care has evolved towards a

community pattern based on two main principles:

respect of basic rights of individuals suffering from

behavioural and mental disorders, resorting to most moderninterventions and techniques, which, in the best of cases, are

translated by a careful desinstitutionalisation supported by

health agents, consumers, families, progressive communities.

This is what the 14 / 9 / 1990 CARACAS declaration meant

at the Regional Conference on Restructuring Psychiatric Care

in Latin America (VENEZUELA), more precisely:restructuring based on primary health care revision of the

hemogenic and centralizing role of the psychiatric hospital

KaswaPhoto : mental patients-CHAINAMA Hospital. LUSAKAimperative preservation of the dignity of the person as well as

that of human rights.

Alas, as we all know, the world is far from being perfect.

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The mental patient image, perceptions and mental health

practices have not evolved and remain controversial or, lets

admit it, always problematic.Social perception of the mental patient, as for other diseases,

leper yesterday, HIV/AIDS today, has certainly gone through

changes, but those changes are slow, marked by hesitations

and a feeling of discouragement. These developments are

perceived by the mental patient as oscillating between almosttotal lack of interest and excessive and inhibitive sense of

guilt.

During this period placed under the emblem of tolerance and

human rights, perhaps the time has come to introduce one of

the wishes of society, namely respect of differences that could

exist in the way individuals are and think, especially if thosedifferences are inherent to their diseases and to hazards of

their existence.

Hence, should the mental disease not arouse contradictory

feelings today, divided between pity, compassion, fear,rejection and hatred?

Nevertheless, despite the progress in the treatment and effortsto improve how to take charge of mental patients, there are

still many important unanswered questions!

What image does the mental patient have of himself?

What does his inner life conceal?

What does his silence mean?

Does his inner life organized so as to lead the subject to theacceptance of himself, others and reality?

What are his living conditions?

Finally, how does he live himself and to what does his quality

of life tally?

Such are the questions that certainly deserve a clear answer. If

the patient does not say anything, be careful, for that does not

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mean that nothing is happening. It is a question of his

invisible life, with a litany of complaints and reactions

externalized by loss of esteem and self-confidence, increasinguncertainty about tomorrow (the future?) and somewhere an

illusion of being still a human being. There is therefore for

society a kind of air vent on the patients real-life experience

by himself, on the way he conceives himself in reality,even if

externally he shows restlessness, sadness and other bodilyexpressions.

Real-life Experience and quality of life

Psychiatry equals madness is still too present in our minds.

A consensus emerges from all the literature: people sufferingfrom serious mental incapacity have serious difficulties to

live in society and they have trouble integrating a position in

the framework of basic social institutions of our community

(family, work). Hence, the return to the fold, after psychiatricconsultation shows a problematic feature with numerous

obstacles. For the large public; the psychiatric hospitalremains a stigmatized institution, to such extent that, after

staying for some time there, the mental patient is often

associated with the psychiatric hospital and he has to start a

patient trajectory; a psychiatric carrier.

The prejudice is notonly considerable

and long lasting, but

it is even mediocre,

even after healing

(4).

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For the large public; the psychiatric hospital remains a stigmatized

institution (Chainama Hospital-Lusaka/Zambia). Kaswa Photo

Henceforth, the patient has to fight exclusion all his life.

More often than not, confinement and isolation appear to be

the sole alternative.

Hence this bad self-real-life experience, the non-satisfaction

of basic social and functional needs (18) are predictive factors

of a bad quality life of subjects suffering from severedisorders.

Today health is no longer defined as an absence of disease,

but as a complete state of physical, psychological and social

welfare.

As for mental health, despite the social progress and progressin present psychiatry, we cannot sum up in a clear and precise

definition the complexity of phenomena that are made up by

the whole of mental disorders.

Lets say that mental disease appears as a disorder that affects

the thought, feelings, or behavior of a person to such extent

that his conduct becomes incomprehensible and unacceptablefor his entourage. Therefore, the individual is affected in his

personnel equilibrium as well as in relationships with other

people. According to the model used most frequently in

contemporary psychiatry, the biopsychosocial model, mental

disease does not presuppose any unidimensional cause butrather an array or accumulation of factors of biological, psychological and social nature that negatively affect the

individuals equilibrium.

Mental disease does not mean mental deficiency! The

latter is a state that limits a persons learning (3).

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The real-life experience is the perception of ones own

vulnerability, ones experience of disease, the subjects

internal perception, subject that is his own reference, his ownwitness.

GOOD REAL-LIFE EXPERIENCE: the adaptive aspect of

health; which, according to us, is a relatively trouble free

mental state that enables the individual to function asefficiently and for as long as possible in the environment

where he will be placed by chance or by choice.

The quality of life tends to replace the notion of good

health. The quality of life, from an individual point of view,

is what one wishes on an new year day, not simple survival, but what makes life to be good (health, love, success,

comfort; pleasure), in short happiness From Good health

at all cost, we have moved to a relativisation of the physical,

mental, and social state of individuals. Each disease shows itscharacteristics and therefore its consequences on the quality

of life of the patient who is suffering from it.

Adaptation to the environment makes it necessary to

communicate with him. Optimal communication is the

harmony wanted by man with himself and with his

environment, hence with others. The difficulty comes from

the fact that other people are not static but they changecontinually, hence the need of a dynamic adaptation. The

latter, according to each ones moments of life, environment,

culture, is set to enter a model of meaning of life that

associates actual real-life experience, received ideas and the

imaginary. This meaning given to life encompasses

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biological, psychological and sociological aspects in a given

cultural framework.

Quality of life is the perception that an individual has about

his place in existence, in the context of culture and value

system in which he lives in relation with his objectives,

expectations, norms, and preoccupations. It is a very large

concept that is influenced in a complex manner by thesubjects physical health; psychological state, level of

independence, social relations as well as his relation with

essential elements of his environment (W.H.O., 8. 1993). The

quality of life concept includes physical and psychological

health, the degree of autonomy, social relations, personal

options, and relationship with the environment. Health andquality of life tie up and complete each other (8).

Only the subject can assess his quality of life. There is no

possible yardstick in this matter, no norm, no standardization.

What are we looking for?

Certainly, misfortune and suffering cannot be measured;

however, we can imagine the impact of these troubles thanks

to instruments used to assess the quality of life (28). Living is

also laughing, singing, crying, arguing, touching, going out,

loving, sleeping, caring for ones body, enjoying life. We

think that it is a complex conception between physical health,psychological state, believes and social relations (16).

Therefore we will try to demonstrate that, by helping the

schizophrenic to improve himself his real-life experience,

through information, education and communication, he will

change and his quality of life will improve. He would be, in

this way, the first person to unmaddenise psychiatry!

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Perception of his own vulnerability and of his experience of

the disease will greatly influence his quality of life, even if,

after all, doctors are the people who determine the treatment(2).

Thus, we turn towards a practical application for the benefit

of the patient, that is:

Collecting reliable data that enable us to appraise the

relevance of some therapeutic momentum, indicating changesin the fields of quality of life that are of interest to everybody,

the patient, the family, as well as the practitioner (26), assess

the effects of our intervention on the perception by the patient

of his state, evaluate the quality of life before and after the

improvement of real-life experience by himself.

An interesting approach consists in setting, from the opinionof our patients, a questionnaire on quality of life, adapted to

our sociocultural context (14).

Objectives

Improving and promoting the state of health of theschizophrenic through changing his real-life experience of his

state and through reducing handicaps, distress and discomfort,

in order to enable him to live better with his disease.

Learning to observe, to distinguish between the clinical signs

and a mental dysfunction, to listen to the psychical suffering

hidden behind behavioral disorders, to collect and canalizethat anguish, at times unbearable, that the patients pass back

to us and to accompany the patient in view of a return to an

ordinary environment to live differently among other people.

Taking into consideration the perception by the patient of his

own state of health by perfecting instruments for specific

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measurements adapted to our environment, and make

accessible the deep feeling of the patients and their capacity

to satisfy their needs and desires which have often remainedinaccessible by lack of appropriate means of evaluation.

To consider henceforth, under a new day, mental health,

neglected for a long time, in the psychodynamic

comprehension of the caregiver-cared relationship anddemonstrate the need to improve relationships between the

caregivers, the entourage and the patients.

Giving health professionals the means to know better the

extent of the mental health problems of the schizophrenics for

whom they work, in the interest of better care in order toimprove prevention, therapeutic capacity, rehabilitation and

reinsertion, and putting at the disposal of the community an

indicator that enables to spot patients presenting low levels of

quality of life in order to develop more precociously help andadapted medico-social support strategies.

To complete henceforth treatments aiming at curing through

specific care turned towards change of the mental patients

real-life experience by himself and his entourage and through

development of the patients relational abilities; as well as

aptitudes to sociocultural and socio-professional exchanges

and thus get to not reinserting in the community the stablechronic mental patient by means of a chemical strait jacket,

which is equivalent to confinement in hospital, without any

reason.

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- -Target population

- -Epidemiological definition

- -Taking charge of medical care

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SCHIZOPHRENIA


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CHAPTER II: SCHIZOPHRENIA

Target population

Schizophrenia; often rejected, of apparently easy diagnosis, is

costly and it has a deep influence on the patients existence

and subjective feeling of well-being. Suffering from an

incurable mental disease, the individual accepts its socialconsequences daily. This pathology requires regular

hospitalisation, which causes heavy constraints for patients,

who have little financial resources in general and often live at

their parents near whom they are submitted to considerable

tension to the extent of being separated from them due to

chronicity and to a series of ever-present symptoms.Few of them manage to break through some maturing stages

of the adult life such as marital life, having children or a job

within which they can blossom. It is in this category that we

should recruit, in a given period, all stabilized subjects amonga population of schizophrenic outpatients, thus living between

the hospital and their home, hospitalized at least twice, andwho have all been diagnosed schizophrenics according to

DSM-IV criteria.

Stability will be an additional criterion for the choice, as the

patient has to show coherence of speech, aptitude to answer

questions, lucidity and a beginning of adaptation to his

environment.

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Epidemiological definition

Schizophrenia is a group of psychoses that have a commonsemiological core: dissociation.

It marks a dislocation of psychic life in different sectors of

intelligence, thought, affectiveness, relationship life and

apprehension of reality.

Schizophrenia is a change of brain functioning that disturbsthe thought and judgment process, sensorial perception and

capacity to interpret and react in an appropriate manner to

particular situations or stimuli are affected.

This symptomatology deeply affects the existence of the

individual. The high suicide rate translates the exceptional

nature of the schizophrenics feelings about their life.(Lemperire, 1996).

Schizophrenia is a destabilizing chronic disease affecting 1%

of the population. Studies have demonstrated a prevalence of0.6 to 8.3 for 1000 inhabitants, about one per cent of the adult

population suffers from schizophrenia (Shur 1988).

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Source: O.M.S. J.M.S 2001

Number of schizophrenic patients in the world (in millions)

Photo Kaswa

The first symptoms usually appear between the age of 17 and

24 and can be mistaken for behaviors related to adolescence.Ben Ismalwrites that deep social changes during the two last

decades and intense acculturation conflicts have caused aspectacular progression of schizophrenia, mainly in urban

large cities.

In 1972, Lejri and Ammar also observed that schizophrenia

was developing more and more in favor of present family

constellation disturbances and the sense of unfulfilment of

families with physical or functional exclusion of one of thetwo parents. On our part, should we emphasize the

importance of what we live in the cultures overlap, the

infinite increase in the number of scales of values and society

patterns, conveyed, up to inside our homes, by media

invading through satellite dishes, cinemas, etc? Are these

contradictory models not at the origin of difficulties of

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identification involving individual fragility that it might cause

at the cultural scission of the Self level

Taking charge of medical care

A few decades ago, healing at any cost preoccupied medicine

and chronically ill people were receiving less attention.

During the recent decades, the pharmacological approachprevailed and had a significant importance. Usually; drugs

control positive symptoms (hallucinations, delirium); they

have no or little effect on negative symptoms (personality

disorder). If one can live without any drugs, one cannot

live without care. Modern man is no longer surviving, he

lives longer and now he wishes to live better. Even if diseaseis invalidating, it should not be a nuisance (17). Taking

charge of schizophrenics entails a whole spectrum of

interventions that must include medicines, psychological

support, rehabilitation and reinsertion efforts.

Today, when a patient does not heal, the approach isdifferent; one tries as hard as possible to maintain his

autonomy and quality of life (6).

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- Quality of life in schizophrenia

- Specific instruments- Properties to be observed

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DEVELOPMENT OFEVALUATION OF THE

QUALITY OF LIFE


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CHAPTER III: DEVELOPMENT OF THE

EVALUATION OF QUALITY OF LIFE

Quality of life in schizophrenia

This work develops a questionnaire for measuring the quality

of life of the schizophrenic through improvement of his life

by himself.Interest in the quality of life in schizophrenia has grown,

between 1960 and 1970, with the desinstitutionalisation

movement (1). Since the eighties, a lot of effort has been

deployed to determine whether schizophrenic patients were

capable or not of assessing their own quality of life. (21).

In 1983, Lehman demonstrated that indicators of the quality

of life were reliable on patients suffering from chronic

psychiatric disorders. The author concludes that mental health

does not alter significantly the answers of the subjects.According to these results, quality of subjective life is

measurable with these types of patients (20).

Other studies confirm these results (Voruganti and coll. 1998,

Lehman and coll., 1993, Franz and coll., 2001).

However Lehman observes that the mental health index and

subjective indicators of the quality of life are correlated.

Thus individuals suffering from mental disorders are reallycapable of assessing their quality of life, but they also have a

specific conception of their life.

Therefore, setting up a questionnaire from the patients

opinion seems to be an interesting approach to be privileged.

We should not loose sight of the fact that data collected are

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meaningful only if it is specified that it is the quality of life

seen through an individual suffering from schizophrenia.

Indeed, his conception is to be distinguished from that whichis accepted by most sane individuals or those suffering from

affection that is less weakening physically (14).

The presence of a therapeutic relationship is likely to help the

patient to assess his quality of life (McAbe and coll. 1999).

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Specific instruments

Measuring instruments of the quality of life were elaboratedfrom different health and disease models.

Thus, some instruments use a functional health model while

others use an experimental model, in the sense that they take

into account the subjects experiences in relation to disease.

(Cf. Costain and coll., 1993). Each instrument categorytackles consumers problems from a different angle (10).

The choice of the instrument and the conception of the

survey/evaluation have an influence on the capacity to detect

change between observed individuals. Many different types

of questionnaires were consulted. However, they were not all

appropriate for us for the following reasons:some were considered too long (more than 100 items)

others should be completed by other experts others still had a

very short view of the quality of life some were even limited

in terms of their psychometric properties the system had tobe a self-evaluation.

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Properties to be observed

Subjective measures are often constructed from self-administered questionnaires. They relate to many health

factors, to perceptions, to attitudes in relation to health,

welfare, habits of life as well as to functional limitations:

autonomy, sociability, incapacity. There are several sources

of chancy error that are necessarily linked to the conceptionand application of the instruments. There is good reason to do

anything, at the planning stage, to increase the accuracy of the

evaluation and to detect better the possibilities of error (12).

Roughly, two types of errors in the answers have the effect of

reducing coherence of the sets of data (reducing the level of

reliability) and undermine the trust that one can have in theresults obtained.

Firstly, there is non-systematic or chancy error, which occurs

when the scores obtained by the subjects are influenced bychance. This type of error decreases the accuracy of the

estimated value of a parameter by increasing the unexplainedvariation in the whole lot of data.

When the whole lot of data is too vague, significant

differences that could be found there risk more passing

unnoticed.

Secondly, there is systematic error that occurs when there is asystematic and unforeseen element that affects all the

observations in the same way and distorts conclusions.

The possibility of a systematic error compromises the

significance or validity of any important conclusion. Thus,

before designing a new measuring instrument of the quality of

life, it is imperious to know some psychometric principles in

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order to know that it is the patients quality of life that is

really being measured (5). Though a complete analysis of this

process extend beyond the framework of this document, weare compelled to consult a good book on designing

investigation plans, and in the present case, Portney and

Watkins, 1993. Therefore it appeared important to us to

remind those principles here.

The quality of a scale of evaluation of the quality of life is

defined by its degree of validity and reliability. Validity

concerns coherence of the scale with the whole lot of data that

one possesses inside a field (external validity), but also

coherence of these figures with other figures taken in the

same population (internal validity). This validity, of course, isthat of the degree of significance of the instrument and data

that it allows to obtain (15).

Questions such as what is really being measured?

What do the results mean?These results, do they apply to other people?

The validity of an instrument or a method refers to its degree of truth . Determining the significance or the truth

of a measurement is a complex question that supposes that the

return of an instrument in relation to that of other instruments

or criteria duly proved to establish to which extent it fulfils

the expected function of the evaluation activity

(32).

Several types of validity can be counted, notably the apparent

validity, content validity, construct validity, convergent

validity, and predictive validity (Weiner and Stewart, 1984,

Aiken, 1991). We shall look hereafter into the determination

of the apparent/content validity and converging/predictive

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validity since these are concepts that evaluators should know

thoroughly.

Apparent validity and content validity: apparent validitymeans the degree at which an instrument appears to ask

questions on a content that concerns both the measured

objective and the respondents experience. In other words, if a

measuring instrument of the quality of life seems to have no

relationship with the respondents life experience, the givenanswers have more risk of containing errors attributable to

wrong interpretations or lack of motivation, possible source

of inattention on the part of the respondent. In addition, less

relevant items can give rise to answers that are impossible to

interpret. Such is the case for example when one asks a group

of schizophrenic subjects questions relating to theirsatisfaction with regard to their spouses when in fact very few

of them are married.

The content validity is close to apparent validity, the maindifference between the two being that, in the first case, it is a

group of experts that examines the instrument and determinesat which degree questions of an instrument are used to

measure the studied characteristics.

The convergence of views between people who are perfectly

familiar with a subject, concerning the content of an

instrument, contributes to validating its content (Streiner,

1993).It is frequent for the validity of an instrument to be

compromised when respondents have different interpretations

of the meaning of an item. For example, if the statement: To

what extent are you close to your family? is interpreted in

such a way that family members evoke for some

descendants and for others ascendants , data relating to

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the group become impossible to interpret. Hence the necessity

to take into consideration interpretations to which items could

give rise in people supposed to answer a questionnaire onquality of life. Hence also the necessity to skim through the

instrument in order to determine the items and the scales are

adapted to the understanding level of the respondents

(vocabulary, educational standard, etc.).

Construct validity: a theoretical concept that was created to

explain and structure some aspects of knowledge [and

observations] (American Psychological Association, 1974,

p. 29).

Among the constructs used in measuring instruments of the

quality of life, there are the satisfaction, importance andfunctioning in the fields of personal, family, social and

community life. The perfecting of measuring instruments or

scales that allow measuring properly such constructs is a

process said of construct validation. Measurements taken byusing an instrument that has good construct validity will give

results in correlation with those of other instruments that aretheoretically about the same constructs.

For example, if a researcher who tackles the quality of life

from an objective point of view elaborates a new measure of

the intellectual functioning, one could, in principle, expect a

correlation between results obtained by means of that

instrument and those of other measurements duly tested andvalidated of skilfulness, functioning and intellectual

efficiency.

Another method used commonly used to determine the

construct validity of an instrument is the validation factorial

analysis. It is a statistical method that consists in assessing the

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answers given to items of an instrument in order to establish

if they regroup, as they should theoretically.

Thus, there should be strong correlation between items thatrely on the global satisfaction construct. On the contrary,

correlation between items based on the physical functioning

construct and those that stake on global satisfaction should

not be too high.

External validity: a type of validity often taken for granted

consists in knowing to what extent inferences made from

results describe the whole population. More precisely,

external validity refers to the adaptability between

instruments and methods on one hand, and the object of the

survey on the other hand.When one neglects to establish the correlation between the

instrument and the measured objective, the significance of

any observation can be questioned and there is a risk of not

leading to any conclusion.If the results obtained by means of these measurements are

often comparable from one instrument to the other, their linkswith the effects due to processing are less obvious (19).

Reliability is the sensitivity and specificity of the scale, that

is to say, the potential of data to vary according to effective

variations of the phenomenon that one wants to observe.

As a reminder, reliability refers to coherence in the collectionof data by means of a measuring instrument or method.

Our instruments internal coherence will be good if subjects

will answer in a coherent manner similar items of that same

instrument. We also consider the temporal coherence of the

instrument to be good when the same subjects, assessed twice

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(at different times), get essentially identical scores (the

studied characteristics do not change).

As the scale is formed of closely linked items, its internalcoherence index, the Cronbach Alpha coefficient (9) must

be satisfactory (> 80).

Reliability and validity are at the base of any measuring

activity, and it was necessary for us to properly grasp theseconcepts as we wanted very much to take enlightened

decisions at the time of planning for the assessment project

implementation and analysis.

It is known that, the higher the number of items, the higher its

reliability will be. Thus, all other factors being equal, a

questionnaire relating to quality of life that has less items willbe less coherent than a longer instrument and it will give rise

to more fluctuations in the scores obtained by the patients,

due to chance answers.

Apart from mathematical considerations, various reasons

explain why multiple category scales are in the whole morecoherent than instruments that call on unique categories. An

interesting theory was put forward to account for this

phenomenon, i.e. that multiple category instruments generally

incite subjects to search their memories in order to find

relevant experiences that will guide their answers.

It seems that this search for relevant information elements hasthe effect of reducing quick judgment and preconscious

thought impact that are only tangentially linked to the prime

raison dtre of the question (Pavot and Denier, 1993a).

Another way of increasing the answers coherence is to ask

respondents to find and list fields that they think are the most

important. (cf. Schedule for the Evaluation of Individuals

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Quality of Life see XXVI, chapter 5) or still attach the

categories back to their recent life experiences.

This way of proceeding has other advantages, for it enables usto rapidly see to what extent the item is well understood by

the subject and whether it shows interest for him.

We did also proceed to doing test-retest reliability and

parallel form reliability.

Another mean of assessing the accuracy of a scale consists indetermining to what extent two assessments made at two

different times using the same scale and with the same

subjects, match up, in other words, of establishing the degree

of correlation between results.

Of course, we start here from the notion that the time interval

must be sufficiently brief so that we have the insurance thatthe measured characteristics do not change between the two

assessment sessions, but long enough to ensure that the

subjects do not answer from memory (30).

The test-retest trust coefficient indicates to what extent

answers to the same items are identical when the same test isadministered to the same subjects at different times. In

general, the test-retest constancy index is slightly lower than

the internal coherence index (Generally, a >0.75 coefficient

indicates sufficient test-retest constancy).

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44


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CHAPTER IV: PSYCHOMETRIC COMPARISON

ChoiceWe had to consult several types of quality of life assessing

instruments. We started from a table showing 28 instruments

on which their reliability and validity principles rested. It was

not easy for us to determine the quality of instruments, the

trust coefficients varying according to the number of items.We know that it is perhaps preferable, when we embark upon

an evaluation, to choose a short instrument, easy to administer

and less accurate than a long, very stable and very reliable

indicator. Likewise, instruments that measure individuals

behaviour or symptoms are generally less homogenous, such

that their internal coherence is lower than scales composed ofmore general and evaluative items. Before such panoply, each

of the rubrics of these instruments was examined in detail to

enable us to make a choice (11).

This choice of the instrument depended on various factors:

the type of questionnaire,the fields of study,

questions for each field,

especially the necessary resources for its application.

All that should meet our objectives to such extent that a

realistic compromise was to be found between clinical

efficacy and learned assessment.Our decision were equally influenced by the choice and

accessibility of psychometric analyses:

reliability and validity,

the method of data collection,

the characteristics of the items,

the approximate administration time.

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I any case, the relevance of our instrument; it does not matter

the mode of administration, had to be appreciated according

to the usage that we wanted to make of it with ourrespondents and according to whether or not the instrument

enabled us to get answers to the questions asked by the study.

To avoid being confronted to the high cost of evaluation, we

proposed, as a solution, to resort to a self-administered

questionnaire and to automated systems of data collection andinput in order to use computing to assess the quality of life.

Thus, We decided to explore and analyse thoroughly three

evaluation tools of the chronic mental patients quality of life,

more especially the schizophrenic, whose psychometric

qualities are tested.

These are:

S-QoL of Marseilles (1),

the SQLS of Oxford Outcomes (13) and

QL of Leyman. (21).The S-QoL

Recently the public health laboratory of the Marseilles schoolof medicine, with the collaboration of PsycCLE (Cognition,

language and Emotions Psychology Research Center) and the

psychiatry service of the CHU of Timone developed a new

measuring instrument of quality of life specific to

schizophrenia that can be self-administered.

SQLS OXFORD OUTCOMES

In case of certain very frequently used instruments such as the

Oxford Outcomes, we selected representative items among

about thirty that existed taking into account the interest they

represented for the study population.

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LEHMAN (QL)

The method consists in collecting the opinion of the interested

party on several aspects of his life in order to assess theconsequences of harmful symptoms and disorders.

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Psychometric comparisons of instruments

APPLIED FIELDS OF LIFE

Measuringinstruments

Health

Symptoms

Financialsituation

Livingconditions

Family

Socialandloverelations

Leisure/

Creativity

Particip

ationtocommunity

life

Religion

Self-esteem/well-being

Sqo

L

* * * * * * * * *

SQ

Ls

* * * * *

QL

LE

HM

AN

* * * * * * * * * *

The three tools have in common, as far as psychometrics is

concerned:

Specificity of the chronic mental patient, the schizophrenic,subjectivity, self-evaluation, reliability, validity, feasibility,

satisfaction.

They are among the most recent and up to date; the fields of

life, the number and the types of items, as well as the time

required for the survey differ.

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We borrowed from some and from others, either some items

from SqoL and SQLS and fields from QL of LEHMAN,

which we adapted later to our sociocultural context.From these tools, it is LEHMAN that seemed to deal

thoroughly with the question of fields of life registered by the

Quality of life evaluation interview. That is how we are going

to construct our questionnaire using the last instrument as a

basis, to which we shall add some missing elements fromothers, the whole thing has to be adapted to our population,

our sociocultural environment and to objectives of the

questionnaire, while attending to the common-core syllabus.

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51

Constructing thequestionnaire


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STAGES:

Stage I: Conception of the questionnaire

Stage II: Constructing the questionnaireStage III: Forming stage of the evaluation scale of the quality

of life in the schizophrenic patient

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CHAPTER V: CONSTRUCTING THE

QUESTIONNAIRE

Quality of life evaluation instruments are standardised tools.

The construction and analysis methodology of the

questionnaire is established and recognised by the

international community. One of the applications of these

new measurements is the assessment by the patientsthemselves of their state of health (24).

We want to know if the schizophrenics are happy, the best is

to ask them. It is therefore a questionnaire that is designed to

assess conditions in which people suffering from serious

mental diseases live, by examining subjective evaluationfactors, subjectivity being a key dimension in measuring

quality of life. Hence, to make a good questionnaire, we

needed:

Help from patients at all stages of the elaboration of thequestionnaire to witness, test, validate, and answer.

We needed and still need to look for specialists in quality oflife measuring, expertise from psychiatrists, psychologists

and sociologists.

Time, it took us 18 months of continuous work;

STAGES

We planned for three stages in the development of our

questionnaire:

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Stage I: Conception of the questionnaire

Itemize problems that concern the individual withschizophrenia and determine the fields of life (item

generation stage),

Create a questionnaire based on the development of the first

stage (revision of items and scale forming stage),

Test and appreciate the new development of the questionnaire(construction validity test stage).

*Interview with patients at CHCHBM

It was agreed that some provisions for selecting the target

population and define modalities of collection throughquestionnaires. The proposed project should take into

account:

the patients expectations

that the services done give him satisfactionthat he has access to his rights

that he is closely associated with the project that concern him;

While mental health professionals at CHCHBM put emphasis

on the handicap associated with pathology, the patients did

content themselves with more quibbling about on ordinary

dimensions, attached back to normal life; schizophrenics

defined quality of life by health, leisure, joy to live in family.That probably is the reason why patients suffering from

chronic mental affection see their quality of life as more

correlated with psychosocial factors rather than with factors

associated with pathology.

Generative items were realised by a panel formed of

psychiatrists, nurses, psychologists, medical social workers,

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and administrative staff of the psychiatry department, from

individual interviews with ten patients of different clinical

forms of schizophrenia, stabilised, under treatment and still inhospitalisation at CHCHBM The interview with them was

held with a semi structured questionnaire.

Evaluative criteria rested on the patients cognitive or

emotional judgement, and students conducted the pilot test at

the time of their end of cycle works. Here, it was a self-assessment by the respondent.

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Definition of categories of evaluative dimensions.

We chose these fields to define the way in which eachrespondent perceives his own quality of life.

It is:

Health, Psychic symptoms, Self-esteem/well-being, Relation

with family, Social and love relations, leisure/creativity,

participation to community life, Religion, Financial situation,Living conditions.

1 Health:

Items or scales relating to physical functioning, precise

physical symptoms or the state of health.

Psychiatric symptoms:

Items or scales concerning symptoms associated with a state

of mind or a mental disorder.

3 Financial situation:

Items or scales concerning the respondents welfare orsituation..

4 Living conditions:

Items or scales concerning the appropriate state or nature of

the respondents life environment.

5 Family:

Items or scales deliberately aiming at family members and not

other sources of social support in the respondents life.

6 Social/love relationships:

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Items or scales concerning the degree of social support

enjoyed by the respondent, emotionally or materially.

7 Leisure/creativity:

Items or scales concerning the quantity or the nature of the

respondents leisure or creative activities.

8 Participation in community life/productivity:

May be this is the most controversial grouping. These items

or scales concern the quantity, the degree or the nature of

participation in community life or employment activities.

Items were grouped on employment and community

participation because a lot of people suffering from chronic

mental diseases are not in full time employment, nevertheless,they can devote themselves to other activities that contribute

to the community good functioning.

9 Religion:Items and scales concerning formal or free practice of a

religion, a cult, or a type of spirituality.

10 Self-esteem/well-being:

Items or scales concerning the patients emotional,

psychological or subjective state, including comprehensive

self-esteem, a feeling of psychological well-being,

contentment, optimism and the manner of looking at life.

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Stage II: Constructing the questionnaire

Setting up a questionnaire based on development of the firststage (development of items and scale forming stage). This

stage takes place in Harare, ZIMBABWE.

The interviews took into account various factors: clinical

form, acute or chronic episode in hospitalization, as a walking

case, first episode notion.

* Items

One hundred and sixteen items were chosen; after the first

analysis, we remained with 109 items (first version of the

questionnaire), then 92 at the end of a subsequent sorting

phase.

* Categories

The 92 items were grouped in eleven categories:

Health, Psychic symptoms, Self-esteem/well-being, Relationwith family, social and love relations, Leisure/creativity,

Participation in community life, Religion, Financial situation,Living conditions, Autonomy.

* Modalities of answers

Five modalities were retained (33):

Sevendays ago Answers

Questions Never

0

Rarely

1

Sometimes

2

Often

3

Always

4

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Stage III: Forming stage of an evaluation scale for the

quality of life of the schizophrenic

Inspired by the W.H.O. presentation (11), we went down

from 81 questions of the previous questionnaire to 44, of

which 4 per field. The 44 items were grouped in eleven

categories or fields of life:

Health, Psychic symptoms, Self-esteem/well-being, Relation

with family, social and love relations, Leisure/creativity,

Participation in community life, Religion, Financial situation,

Living conditions, Autonomy.

The notion of subjectivity takes all its value when one

questions oneself about autonomy.Without autonomy, it is impossible to go and work, to

establish stable relations with somebody, to project oneself

into the future. Any healthy person could think that freedom

of action is a positive and indispensable data of life.

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FIELDS OF LIFE

Health

Psychic symptoms

Self-esteem/well-being

Relation with family

Social and love relationsLeisure/creativity

Participation in community life

Religion

Financial situation

Living conditions

Autonomy

60

EQLSEVALUATION OF THEQUALITY OF LIFE OF

THE SCHOZOPHRENIC


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CHAPTER VI: EVALUATION OF

THE QUALITY OF LIFE OF THESCHIZOPHRENIC (EQLS)

INTERVIEWER ID N /_____/_____/_____/

DATE: /___/___/_____/

STARTINGTIME:/___/__/__/ PLACE:

/________________/

PARTICIPANT ID N: /_____/_____/_____/____

AGE: /______/

SEX: /_____ ETHNIC GROUP: /___ /

COMMUNE: /___ _/

STABILISATION /______/ REAL-LIFE EXPERIENCE:/______/

We are interested in knowing your quality of life during the

seven last days. Please answer all the rubrics by ticking a box

for each rubric.

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3. SELF-ESTEEM/WELL-BEING

D3.1 My whole being inspires me confidence.

Never

0

Rarely

1

Sometimes

3

Always

4

D3.2 My authority is respected in familyNever

0

Rarely

1

Someti

mes

3

Always

4

D3.3 I am comfortable in publicNever

0

Rarely

1

Someti

mes

3

Always

4

D3.4 I am satisfied with what I do

Never 0

Rarely1

Sometimes3

Always4

4. RELATION WITH FAMILY

D4.1 I am with my family

Never

0

Rarely

1

Sometimes

3

Always

4

D4.2 And the family listens to me

Never

0

Rarely

1

Sometimes

3

Always

4

Never

0

Rarely

1

Sometimes

3

Always

4

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D4.3 In case of difficulties, the family helps me

Never0

Rarely

1

Sometimes3

Always4

D4.4 I love my family members, and I am loved

Never

0

Rarely

1

Sometimes

3

Always

4

5. SOCIAL AND LOVE RELATIONSHIPS

D5.1 I have friends

Never

0

Rarely

1

Sometime

s

3

Always

4

D5.2 Friends visit me

Never0

Rarely

1

Sometimes3

Always4

D5.3 Beside that, I am sexually active

Never

0

Rarely

1

Sometime

s

3

Always

4

D5.4 I am satisfied with this sexual lifeNever

0

Rarely

1

Sometimes

3

Always

4

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6.LEISURE / CREATIVITY

D6.1 I visit friendsNever

0

Rarely

1

Sometimes

3

Always

4

D6.2 I do my shopping

Never

0

Rarely

1

Sometimes

3

Always

4

D6.3 In the evening, I like watching TV

Never

0

Rarely

1

Sometimes

3

Always

4

D6.4 At parties, I like dancing

Never

0

Rarely

1

Sometim

es

3

Always

4

7. PARTICIPATION IN COMMUNITY

LIFE/Productivity

D7.1 I attend events in the neighbourhood with friends

Never

0

Rarely

1

Sometim

es

3

Always

4

D7.2 And I like talking with people around me

Never

0

Rarely

1

Sometim

es

3

Always

4

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D7.3 I need to get information

Never

0

Rarely

1

Sometim

es3

Always

4

D7.4 I manage to fulfil my projects

Never

0

Rarely

1

Sometim

es

3

Always

4

8. RELIGION

D8.1 I believe in God

Never0

Rarely1

Sometimes

3

Always4

D8.2 I read the Bible, (the Koran), the word of God

Never

0

Rarely

1

Sometim

es

3

Always

4

D8.3 I go to a cult

Never

0

Rarely

1

Sometim

es

3

Always

4

D8.4 Prayer brings something to my life

Never

0

Rarely

1

Sometim

es3

Always

4

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9. FINANCIAL SITUATION

D9.1 I can pay for my transportNever

0

Rarely

1

Sometim

es

3

Always

4

D9.2 I buy my medicines aloneNever

0

Rarely

1

Sometim

es

3

Always

4

D9.3 I am capable of feeding myself

Never0

Rarely1

Sometimes

3

Always4

D9.4 I am satisfied with my financial situation

Never

0

Rarely

1

Sometim

es

3

Always

4

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10. LIVING CONDITIONS

D10.1 At home I have my own bedNever

0

Rarely

1

Sometim

es

3

Always

4

D10.2 At home, I have waterNever

0

Rarely

1

Sometim

es

3

Always

4

D10.3 In the neighborhood, I get along with my neighbors

Never0

Rarely1

Sometimes

3

Always4

D10.4 I live in a safe place and in security

Never

0

Rarely

1

Sometim

es

3

Always

4

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11. AUTONOMY

D11.1 I can live without medicinesNever

0

Rarely

1

Sometim

es

3

Always

4

D11.2 For dressing, I choose my clothes myselfNever

0

Rarely

1

Sometim

es

3

Always

4

D11.3 I can take my transport alone

Never0

Rarely1

Sometimes

3

Always4

D11.4 I am capable of doing a job

Never

0

Rarely

1

Sometim

es

3

Always

4

Thank you for your time

ENDING TIME /__/__/__/

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THE SCORE

for an item

for a domain

for a scale

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SCORINGFORMULA


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CHAPTER VII: SCORING FORMULA

* The score (13)

for an item,

the value goes from 0 (the worse quality of life) to 4 (the

best quality of life) (1):

SCORE

0

1

2

3

4

ANSWERS

Never,

rarely,

sometimes,

often,

always

QUALITY

bad

bad enough

good

enough

goodexcellent

Percentage

(0 %)

(25 %)

(50 %)

(75 %)

(100 %)

For a field:

the sum of scores of items(from 1 to 4) ofD domain X 100

100 (the maximum score of an item) X 4(the number of items / field)

For a scale:

The average of the sum of % of all D domains of the scale,

That is:

sum of % from D1 to D11

11

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AgeSex

Residence in Zambia (Province)

Ethnic groups

Real-life experience and ReportStabilisation and Report

Typical questions

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Constructing thequestionnaire


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CHAPTER VIII:THE INTERVIEWERS HANDBOOK

I. AGE II. SEX

01. AGE: /--------/-------/ 02. SEX: /------/

01. 1. 15 - 25 02. 1. Male

01. 2. 26 - 36

02. 2. Female

01. 3. 37 - 47

01. 4. 48 - 58

01. 5. > 58

III. RESIDENCE IN ZAMBIA (Province)

03. PROVINCE : /--------/

03.1. Copperbelt

03.2. Central

03.3. Eastern

03.4. Luapula 03.5. Lusaka

03.6. Northern

03.7. North Western

03.8. Southern

03.9. Western

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04.29. Sera

04.30. Soli

04.31. Swaka

04.32. Tonga

04.33. Tabwa

04.34. Totela

04.35. Tumbuka

04.36. Unga

04.37. Ushi

V. LANGUAGES

05.1. Bemba

05.2. Kaonde

05.3. Lozi

05.4. Luchazi-Mbunda

05.5. Lunda 05.6. Luvale

05.7. Luyana

05.8. Mambwe-Lungu

05.9. Mashi

05.10. Nkoya-Mwela

05.11. Nsenga

05.12. Nyanja 05.13 Nyika

05.14. Tonga

05.15.Tumbuka

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V. REAL-LIFE EXPERIENCE AND REPORT

REAL-LIFE EXPERIENCE /--------/

Good: > 75 %

Bad: 75 %

Awareness of disease /--------/

1. Yes

2. No

Accepts care /--------/

1. Yes

22. No

Feels he is a man like any other/--------/

1. Yes

2. No

There is still hope of recovering previous

capacities/--------/

1. Yes

2. No

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VI. STABILISATION AND REPORT

Stabilization /--------/Good: > 75 %

Bad: 75 %

Contact is good/---------/

1. Yes

2. No

Subdued clinical syndrome/-------/

1. Yes

2. No

Relation with entourage /-------/

1. Yes

2. No

Partial awareness of the state of sickness/-------/

1. Yes

2. No

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* PATIENTS REAL-LIFE EXPERIENCE

Typical questions, report, observationyes = > 75 %

no = 75 %02.1.Awareness of illness (question)

Are you a mental patient?

Do you know the cause ?

Do you accept treatment?

Do you want to heal?

02.2. Accepts care (question)

Do you accept to come for consultation?

Do you accept to take your medicines?

Do you take medicines on your own?

Do you know the names of your medicines

02.3. Feels he is a man like others (question)Have you lost your honor?

Are you ashamed?

Do you feel rejected?

Do you hide?

02.4. There is still hope of recovering previous capacities

(question)

Do you feel you are capable of working?Can you do your shopping all alone?

Can you take your bus all alone?

Can you choose your food and clothes?

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-The patients consent

-Enlightened free consent

-Precautions to be taken

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CONDITION OFADMINISTRATION


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CHAPTER IX: CONDITION OF ADMINISTRATION

The type of study chosen (research-action) makes theinvolvement of field actors to be compulsory. Wherever the

investigation will take place, a preliminary sensitisation of

health, social, administrative, and political partners must be

carried out, on the mental illness, taking charge and what we

intend to do. (3):

* The patients consent

The fact of entering a clinic means that one is agreeable to the

medical contract and the hospitalisation. However, that is not

the equivalent to accepting all subsequent medical decisions.

The patients consent is indispensable before any importantmedical action. He can refuse a diagnosis method, a

treatment, etc.* The enlightened free consent

In order to be able to approve or refuse a medical action, thepatient will be accurately informed about the objectives of the

action, its consequences and the methods to be employed.It is only thanks to this information that the patient will be

able to give you his consent in full knowledge of the facts.

*Precautions to be taken

1. CREATE AN ATMOSPHERE OF TRUST

Reserve a warm, spontaneous, sincere welcome in which youravailability to answer questions will be appreciated. Remain

calm, avoid reactions based on fear or stereotypes, treat the

person as a adult.

In order for the contacts to be more personal, give the hand,

introduce yourself, ask the name, etc.

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84

REFERENCES


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