1

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

3 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 and understanding, Pr Haworth, for his moral support as a good family father, Pr Kinsala Ya Bassy - Neuropsychiatrist, Head of Psychiatric Department, University of Kinshasa, for his valuable 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,

We would also like to extend our gratitude to all the nurses, clinical officers and general workers of CHCHBM for their various contributions to the realization of this piece of work.

5 The Authors Dr J.Kaswa KASIAMA (MD)

Senior Lecturer, secretary of the department of Psychiatry, in charge of teaching, Neuropsychiatrist University of Kinshasa Former 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, CCAI Lecturer- ICT Katanga Methodist University, Evelyn Hone College, UNZA-Cisco Centre Lusaka-Zambia

6 Pr. S. Mampunza Ma Miezi (MD)

Former Director, C.N.P.P., University of Kinshasa D.R.C Professeur Agrg Neuropsychiatrist 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 Health USA Pr. Odimba BwanaFwambaKoshe E.,

MD MPH MGS MSC PHD of Paris, Ordinary Professor, Former Dean School of Medicine Unilu D.R.C.

7 Consultant Surgeon / University Teaching Hospital, Lusaka Zambia

9 Foreword Chainama Hills College Hospital Board of Management:

A third level psychiatric hospital, which has the mandate to Provide: - 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

10 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 reallife experience, that feeling that the patient has of loosing control 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 and activities 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 between the 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 level of quality of life of the schizophrenic patients in our psychiatry department.

11 The handbook includes the following points: Problems and objectives Schizophrenia Development 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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13 TABLE OF CONTENTS ACKNOWLEDGEMENT.3 THE AUTHORS5 FOREWORD.9 Pages CHAPTER I : Problems and objectives....... . The problem Real-life experience and quality of life.. What are we looking for?....... Objectives... CHAPTER II : Schizophrenia .... Target population ... .. Epidemiological definition. Taking charge of medical care CHAPTER III : Development of the evaluation of the quality of life Quality of life in schizophrenia.... Specific instruments ........ Properties to be observed..... 17 18 20 23 24 27 28 29 31 33 34 36 37

CHAPTER IV : Psychometric comparison 45 Choice..... Psychometric comparison of instruments... CHAPTER V : Constructing the questionnaire.. . 46 49 51

14 Stage I: Conception of the questionnaire.. Stage II: Constructing the questionnaire...... Stage III: Forming an evaluation scale of the quality of life of the schizophrenic........... CHAPTER VI : Evaluation scale of the quality of life of theschizophrenic(EQLS)..... Health.... Psychic symptoms ....... Self-esteem / well-being.. Relation with family..... Social and love relationships .. Leisure / creativity Participation in community life ....... Religion. Financial situation..... Living conditions . Autonomy.... CHAPTER VII : Scoring formula............. For an item... For a field... For a scale. CHAPTER VIII : The interviewers handbook.. Age ....... Sex........ Residence in Zambia (province).. Ethnic groups.... Real-life experience and report. 53 57 58 59 61 61 62 63 64 64 65 68 67 68 69 71 72 72 73

75 76 76 76 77 79

15 Stabilisation and report ........ Typical questions . CHAPTER IX : Condition of administration The patients consent ........... Enlightened free consentement... Precautions to be taken ... REFERENCES.. 80 81 83 84 84 84 87

16 ZAMBI ETHNIC GROUPS

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PROBLEMS AND OBJECTIVES

- The problem - Real-life experience and quality of life - What are we looking for? - Objectives

18 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 modern interventions 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

Kaswa Photo : mental patients-CHAINAMA Hospital. LUSAKA

imperative 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.

19 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 almost total 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 those differences 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 efforts to 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 the acceptance 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

20 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, increasing uncertainty 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 bodily expressions. 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 suffering from 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 psychiatric consultation shows a problematic feature with numerous obstacles. For the large public; the psychiatric hospital remains 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 not only 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 severe disorders. 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 progress in 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 unacceptable for 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 but rather 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).

22 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 own witness. 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 as efficiently 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 its characteristics 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 change continually, 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

23 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 the subjects 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 and quality 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!

24 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 changes in 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 opinion of our patients, a questionnaire on quality of life, adapted to our sociocultural context (14). Objectives Improving and promoting the state of health of the schizophrenic 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 canalize that 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

25 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 remained inaccessible 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 and demonstrate 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 to improve 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 and adapted 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 stable chronic mental patient by means of a chemical strait jacket, which is equivalent to confinement in hospital, without any reason.

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27

SCHIZOPHRENIA

- -Target population - -Epidemiological definition - -Taking charge of medical care

28 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 social consequences 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 among a population of schizophrenic outpatients, thus living between the hospital and their home, hospitalized at least twice, and who 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.

29 Epidemiological definition Schizophrenia is a group of psychoses that have a common semiological 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 disturbs the 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 of 0.6 to 8.3 for 1000 inhabitants, about one per cent of the adult population suffers from schizophrenia (Shur 1988).

30 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 Ismal writes that deep social changes during the two last decades and intense acculturation conflicts have caused a spectacular 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 the two 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

31 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 approach prevailed 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 disease is 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 is different; one tries as hard as possible to maintain his autonomy and quality of life (6).

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33

DEVELOPMENT OF EVALUATION OF THE QUALITY OF LIFE

- Quality of life in schizophrenia - Specific instruments - Properties to be observed

34 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 really capable 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

35 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 which is 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).

36 Specific instruments Measuring instruments of the quality of life were elaborated from 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 category tackles 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 to be a self-evaluation.

37 Properties to be observed Subjective measures are often constructed from selfadministered 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 conception and 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 the results obtained. Firstly, there is non-systematic or chancy error, which occurs when the scores obtained by the subjects are influenced by chance. This type of error decreases the accuracy of the estimated value of a parameter by increasing the unexplained variation 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 a systematic 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

38 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, we are 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, is that 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

39 validity since these are concepts that evaluators should know thoroughly. Apparent validity and content validity: apparent validity means 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 given answers 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 their satisfaction with regard to their spouses when in fact very few of them are married. The content validity is close to apparent validity, the main difference between the two being that, in the first case, it is a group of experts that examines the instrument and determines at 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

40 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 on quality 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 and functioning 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 by using an instrument that has good construct validity will give results in correlation with those of other instruments that are theoretically 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 and validated 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

41 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 that rely 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 links with 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 collection of 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

42 (at different times), get essentially identical scores (the studied characteristics do not change). As the scale is formed of closely linked items, its internal coherence 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 these concepts 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 will be 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 more coherent 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 has the 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

43 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 us to 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 in determining 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 that the 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 is administered 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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45

Psychometric comparison

- Choice - Psychometric comparisons of the instruments

46 CHAPTER IV: PSYCHOMETRIC COMPARISON

Choice We 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 of more 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.

47 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 our respondents 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 and input 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 school of 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.

48 LEHMAN (QL) The method consists in collecting the opinion of the interested party on several aspects of his life in order to assess the consequences of harmful symptoms and disorders.

49 Psychometric comparisons of instruments APPLIED FIELDS OF LIFE Health Symptoms Financial situation Living conditions Family CreativityLeisure/ Social and love relations lifeParticipation to community * * * * Measuring instruments 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.

50 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 from others, 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.

51

Constructing the questionnaire

52 STAGES: Stage I: Conception of the questionnaire Stage II: Constructing the questionnaire Stage III: Forming stage of the evaluation scale of the quality of life in the schizophrenic patient

53 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 patients themselves 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 evaluation factors, 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 the questionnaire to witness, test, validate, and answer. We needed and still need to look for specialists in quality of life 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:

54 Stage I: Conception of the questionnaire Itemize problems that concern the individual with schizophrenia 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 through questionnaires. The proposed project should take into account: the patients expectations that the services done give him satisfaction that 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,

55 and administrative staff of the psychiatry department, from individual interviews with ten patients of different clinical forms of schizophrenia, stabilised, under treatment and still in hospitalisation 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 selfassessment by the respondent.

56 Definition of categories of evaluative dimensions. We chose these fields to define the way in which each respondent 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 or situation.. 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:

57 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.

58 Stage II: Constructing the questionnaire Setting up a questionnaire based on development of the first stage (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, Relation with 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): Seven days ago Answers Questions Never Rarely Sometimes Often Always 0 1 2 3 4

59 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.

60

EQLS EVALUATION OF THE QUALITY OF LIFE OF THE SCHOZOPHRENIC

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

61

CHAPTER VI: EVALUATION OF THE QUALITY OF LIFE OF THE SCHIZOPHRENIC (EQLS) INTERVIEWER ID N /_____/_____/_____/ DATE: /___/___/_____/ STARTINGTIME:/___/__/__/ /________________/ PARTICIPANT ID N: /_____/_____/_____/____ AGE: /______/ SEX: /_____ ETHNIC GROUP: /___ COMMUNE: /___ _/ STABILISATION /______/ REAL-LIFE /______/ / EXPERIENCE: PLACE:

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.

62 1. HEALTH D1.1 My body has energy Never Rarely Sometimes 0 1 3 D1.2 I have activities Never Rarely Sometimes 0 1 3

Always 4 Always 4

D1.3 I have time to enjoy myself, too Never Rarely Sometimes Always 0 1 3 4 D1.4 And I am satisfied with my sleep and rest Never Rarely Sometimes Always 0 1 3 4 2. PSYCHIC SYMPTOMS D2.1 I am happy about my body appearance Never Rarel Sometimes Always 0 y 3 4 1 D2.2 I can remember events Never Rarely Sometimes Always 0 1 3 4 D2.3 I believe in my future Never Rarely Sometimes 0 1 3 D2.4 I am in a good mood Always 4

63 Never 0 Rarely 1 Sometimes 3 Always 4

3. SELF-ESTEEM/WELL-BEING D3.1 My whole being inspires me confidence. Never Rarely Sometimes Always 0 1 3 4 D3.2 My authority is respected in family Never Rarely Someti Always 0 1 mes 4 3 D3.3 I am comfortable in public Never Rarely Someti Always 0 1 mes 4 3 D3.4 I am satisfied with what I do Neve Rarely Sometimes Always r 0 1 3 4 4. RELATION WITH FAMILY D4.1 I am with my family Never Rarely Sometimes Always 0 1 3 4 D4.2 And the family listens to me Never Rarely Sometimes 0 1 3 Always 4

64

D4.3 In case of difficulties, the family helps me Never Rarel Sometimes Always 0 y 3 4 1 D4.4 I love my family members, and I am loved Never Rarely Sometimes Always 0 1 3 4 5. SOCIAL AND LOVE RELATIONSHIPS D5.1 I have friends Never Rarely 0 1 Sometime s 3 Always 4

D5.2 Friends visit me Never Rarel Sometimes Always 0 y 3 4 1 D5.3 Beside that, I am sexually active Never Rarely Sometime Always 0 1 s 4 3 D5.4 I am satisfied with this sexual life Never Rarely Sometimes Always 0 1 3 4

65 6. LEISURE / CREATIVITY D6.1 I visit friends Never Rarely Sometimes 0 1 3 D6.2 I do my shopping Never Rarely Sometimes 0 1 3 Always 4 Always 4

D6.3 In the evening, I like watching TV Never Rarely Sometimes Always 0 1 3 4 D6.4 At parties, I like dancing Never Rarely Sometim 0 1 es 3 7. PARTICIPATION IN COMMUNITY LIFE/Productivity D7.1 I attend events in the neighbourhood with friends Never Rarely Sometim Always 0 1 es 4 3 D7.2 And I like talking with people around me Never Rarely Sometim Always 0 1 es 4 3 Always 4

66 D7.3 I need to get information Never Rarely Sometim 0 1 es 3 D7.4 I manage to fulfil my projects Never Rarely Sometim 0 1 es 3 8. RELIGION D8.1 I believe in God Never Rarely 0 1

Always 4 Always 4

Sometim Always es 4 3 D8.2 I read the Bible, (the Koran), the word of God Never Rarely Sometim Always 0 1 es 4 3 D8.3 I go to a cult Never Rarely Sometim Always 0 1 es 4 3 D8.4 Prayer brings something to my life Never Rarely Sometim Always 0 1 es 4 3

67 9. FINANCIAL SITUATION D9.1 I can pay for my transport Never Rarely Sometim Always 0 1 es 4 3 D9.2 I buy my medicines alone Never Rarely Sometim Always 0 1 es 4 3 D9.3 I am capable of feeding myself Never Rarely Sometim Always 0 1 es 4 3 D9.4 I am satisfied with my financial situation Never Rarely Sometim Always 0 1 es 4 3

68 10. LIVING CONDITIONS D10.1 At home I have my own bed Never Rarely Sometim Always 0 1 es 4 3 D10.2 At home, I have water Never Rarely Sometim Always 0 1 es 4 3 D10.3 In the neighborhood, I get along with my neighbors Never Rarely Sometim Always 0 1 es 4 3 D10.4 I live in a safe place and in security Never Rarely Sometim Always 0 1 es 4 3

69 11. AUTONOMY D11.1 I can live without medicines Never Rarely Sometim Always 0 1 es 4 3 D11.2 For dressing, I choose my clothes myself Never Rarely Sometim Always 0 1 es 4 3 D11.3 I can take my transport alone Never Rarely Sometim Always 0 1 es 4 3 D11.4 I am capable of doing a job Never Rarely Sometim Always 0 1 es 4 3 Thank you for your time ENDING TIME /__/__/__/

70

SCORING FORMULA

THE SCORE for an item for a domain for a scale

71 CHAPTER VII: * 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 good excellent Percentage (0 %) (25 %) (50 %) (75 %) (100 %) SCORING FORMULA

For a field: the sum of scores of items(from 1 to 4) of D 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

72

Constructing the questionnaire

Age Sex Residence in Zambia (Province) Ethnic groups Real-life experience and Report Stabilisation and Report Typical questions

73 CHAPTER VIII:THE INTERVIEWERS HANDBOOK I. AGE 01. AGE: /--------/-------/ 01. 1. 15 - 25 01. 2. 26 - 36 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 II. SEX 02. SEX: /------/ 02. 1. Male 02. 2. Female

74 IV. ETHNIC GROUPS: /--------/ 04. 1. Kaonde 04.2. Bemba 04.3. Bisa 04.4. Chewa 04.5. Chishinga 04.6. Ila 04.7. Iwa 04.8. Kaonde 04.9. Kunda 04.10. Lala 04.11. Lamba 04.12. Lenje 04.13. Lima 04.14. Lozi 04.15. Luchazi 04.16. Lunda 04.17. Lungu 04.18. Luvale 04.19. Mambwe 04.20. Mashi 04.21. Mbunda 04.22. Namwanga 04.23. Ndembu 04.24. Nkoya 04.25. Nsenga 04.26. Sala 04.27. Seba 04.28. Senga

75 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

76

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 capacities/--------/ 1. Yes 2. No

previous

77 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

78 VII. TYPICAL QUESTIONS * STABILISATION

Report, observation yes = > 75 % no = 75 % 01. 1 contact is good: (interview with the patient) Hello! What is your name? How are you feeling now? Do you take your medicines? 01. 2 subdued clinical symptoms: (a report) The main initial complaint is no longer there Sleepiness exists Appetite exists The patient is calm 01. 3 relation with entourage (observation) The respondent accepts visits He gets information about his own He recognizes his entourage He is welcoming 01. 4 partial awareness of the state of illness (questions) What is the reason of your presence in hospital? Are you sick? Are disturbed by that? Is it possible to be healed?

79 * PATIENTS REAL-LIFE EXPERIENCE

Typical questions, report, observation yes = > 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?

80

CONDITION OF ADMINISTRATION

-The patients consent -Enlightened free consent -Precautions to be taken

81 CHAPTER IX: CONDITION OF ADMINISTRATION The type of study chosen (research-action) makes the involvement 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 important medical 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, the patient 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 your availability 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.

82 2. ACCEPT THE PERSON FOR WHAT HE IS Avoid diagnosing the person, and accept him as he is, in his entity, accept his factual experience, which is often quite different. Deal seriously with the persons requests, even when they look crazy. The person may be aware that he has a mental disease and he is asking only to be accepted and not to be judged. 3. BE CLEAR AND PRECISE IN COMMUNICATION To give information, use clear, precise, non-childish, not very technical terms. For interpersonal exchanges: detect sensitive cords to establish good relation. Eye expression is more efficient than speech. Some people would tend to interpret your words and detect a double meaning, therefore you should be very precise in your talk and do not let insinuations to come up. 4. AVOID THE PERSON TO ISOLATE HIMSELF In a group situation or among workmates, create situations that facilitate interpersonal contacts, go and fetch the person by touching the right cords to establish good relation. Be available before and after the group activity to meet the persons needs. 5. PAY ATTENTION TO THE NON-VERBAL Observe the funny faces, the voice, the tone that reflect the feelings, states, fright, fear, solitude, sadness. For example, the person who lives a panic crisis can start breathing fast and toss about restlessly; by remaining calm, may be you will reduce the anxiety felt by the person and make him feel secure.

83

84

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