models disablement process* - world health...

Disease, illness and health: theoretical modelsof the disablement process*P. Minaire1

Handicap is the result of a process of disablement whose origin is a pathological condition (disease).According to some definitions of health (e.g., a state of complete physical, mental and social well-being), the classical biomedical concept is too restrictive to cover all the consequences of disease. Newmodels have been proposed: the impairment-disability-handicap model presented by WHO, the situa-tional handicap model, and the quality-of-life model. A unifying schema of the disablement processincludes these concepts and provides a useful way of analysing the consequences of disease. Factorsthat modify the disablement process can be identified by their respective impacts, and provide opera-tional guidelines for public health interventions.

IntroductionWhile life expectancy has slowly but steadily in-creased over the years, both it and the mortality rateare not adequate indicators of the real health statusof populations. For instance, the presence of chronicdiseases and chronic conditions (e.g., after accidentsor as a result of genetic abnormalities) has led togrowing concern and renewed interest in disabilityand disablement. Usually the consequences of dis-ease are assessed in terms of mortality and morbid-ity, but in the context of extended life spans a medi-cal diagnosis has become less important than theday-to-day problems confronting individuals as wellas institutions and policy-makers. International com-parisons show a major difficulty in the definitionof disability and, more particularly, disablement.Disablement is a process related to disease. At firstsight, health can be defined as the absence of dis-ease, but is it only that? What is disease? What ishealth? The answers to these questions are a pre-

* Portions of this paper have been presented at meetings ofthe Network on Health Expectancy and the Disability Process(REVES) in Geneva (Switzerland) and Durham (NC, USA) in1990, and in Leiden (Netherlands) in 1991; the full paper waspresented at the Symposium on the International CollaborativeEffort on Measuring the Health and Health Care of the Aging(Centers for Disease Control, National Center for HealthStatistics, Rockville, Maryland, USA, 4-6 September 1991). Thispaper will also be published in the Proceedings of the 1991International Symposium on Data on Aging (ed., M. Feinleib),National Center for Health Statistics, Vital and Health Statistics 5.1 Professor and Chief, Department of Rehabilitation Medicineand Center for Exercise Studies "GIP Exercice", Universite JeanMonnet, School of Medicine Jacques Lisfranc, F-42023 Saint-Etienne 2, France. Requests for reprints should be sent to thisaddress.Reprint No. 5290

requisite to the analysis of any theoretical model.The models have to be constructed on clear definitionsor concepts, which will guide the choice and thedesign of relevant instruments for testing.

Biomedicine, as defined in Westem cultures,includes a wide array of knowledge, practices,organizations, and social roles dealing with"diseases". Disease is what physicians and biologistsstudy: it signifies an abstract biological condition,independent of social behaviour, and manifests asa deviation from a narrow range of physiologicaland biological variables that are common to thehuman species.

Illness is the clinical situation of a patient suf-fering from a disease. Little consideration is usual-ly given to the sufferer in this concept, much morebeing given to the disease itself. This attitude ofseparation is fostered by long-standing traditions inmedicine, and of physicians, and has provided anabundant literature, including dramas, comedies, andeven tragedies, as well as technical reports.

Health is certainly related to freedom fromdisease. But this negative, monofactorial definitioncan only be poorly applied to the emerging field ofchronic diseases, in which the current distinction be-tween the medical and social aspects of illnessappears to be non-operant. At the present time,health has been defined as a complete state of physi-cal, mental and social well-being; or the capacity tofunction optimally in the individual's environment;or an adaptation to the environment (or milieu).Thus, the development of disease "does not simplyeliminate or incapacitate an individual in somemechanical sense, but rather affects the individual'scapacity and performance as a participating memberof a highly interdependent group" (4). Initially, thesedefinitions were supposed to be unmeasurable. The

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recent focus of interest on disablement-conceivedas a process leading to disability and handicap-hasfostered the development of techniques to measurehealth as defined above (2).

Thus the shift over the past thirty years from (1)"survival" to (2) "freedom from disease", to (3) "theindividual's ability to perform his daily activities",and to (4) the positive themes of "well-being" and"quality of life" explains and supports the fourtheoretical models that can currently be identified:the biomedical model, the ICIDH (WHO) model,the situational handicap model, and the quality-of-life model.

Four modelsThe biomedical modelThe biomedical model is based on the concept ofdisease and has the following sequence:etiology->pathology--*manifestation.

It has been criticized by many researchers, whostate that biomedical diseases are usually inadequatelyconsidered to be "common" to humans and to socialgroups. Conversely it has been observed that bio-medical diseases are not only defined by negativeanatomical, biochemical, and physiological variables,but also by particular physical, cultural and socialfactors. Diseases are therefore neither invariablenor universal (13). Indeed, it should be taken intoaccount that some variables related to disease areof prospective value for the assessment of thedisablement process, at least as key elements for theintroduction of the individual into the process.

The following three groups of useful biomedicalvariables have been identified: diagnosis and lesions,symptoms, and other related indicators (particularlyphysiological and economic).

(1) Certain diagnoses and lesions were observedlong ago to be associated with a high probability ofdisablement. While diagnostic labelling may beinadequate to characterize the quality and severity ofthe disability and handicap, it may be a relevant andeven valid portal of entry into the disablement pro-cess, and can be used as such in demographical andepidemiological surveys. However, it must beremembered that (i) there is no "linearity" betweenthe type and severity of the diagnosis and lesions andthe consequences of the "disease", and (ii) the degreeof dependence expressed by the diagnosis remainsunreliable compared to the valuable information itprovides for the management of the disease.

(2) Symptoms are important for determining themedical management of acute cases (12).Nevertheless, it has been shown that symptoms such

as chest pain on exertion, chronic productive cough,breathlessness, and pain in the calves on exertion(intermittent claudication) consistently reduce (in agiven rank order) the daily activities that people per-form. This order is modified with increasing severityand multiplicity of symptoms.

(3) Other related indicators, such as (i) bloodglucose levels and respiratory or cardiac parameters,or (ii) consulting rates, number of days in hospital,and number of days of incapacitation, are potentialindicators of possible disabling consequences.However, their real value in this respect has to beprecisely assessed.

The ICIDH model

The World Health Organization in 1980 presentedthe International Classification of Impairments,Disabilities, and Handicaps (ICIDH) to support theidentification of the consequences of diseases (6).The construction of the conceptual model is based onfour principal events:- something abnormal occurs within an indivi-

dual;- someone becomes aware of this occurrence;- the performance or behaviour of the individual

may be altered as a result; and- the awareness itself, or the altered performance

or behaviour to which this gives rise, mayplace this person at a disadvantage relative toothers (6).This succession of events, from an interiorized

to an exteriorized experience, culminates in a sociali-zation of the experience which has three dimensions,represented as follows:DiseaseAccident [--impairment-edisability-+handicapAbnormality

The three key terms are defined below.* Impairment: any disturbance to the body's mentalor physical structure or functioning. The impairmentis characterized by a permanent or temporary loss orabnormality of psychological, physiological, or ana-tomical structure or function in a tissue, organ, limb,functional system or mechanism in the body.* Disability: a reduction or loss of functional capa-city or activity resulting from an impairment.Disability is characterized by excesses or deficien-cies of customarily expected behaviour or functions,and represents the objectification of impairmentsthrough their effects on everyday activities.* Handicap: the social disadvantage resulting froman impairment and/or a disability, entailing a diver-gence between the individual's performance or status

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Disease, illness and health: theoretical models of the disablement process

and that expected of him by his social group.Handicap therefore represents the social and environ-mental consequences of impairments and disabilities.

These three dimensions have been discussedand, even if not yet universally accepted, are recog-nized as a basis for analysis and for the design ofrelevant instruments for assessing the disablementprocess. The development of measurements of physi-cal functioning has followed this framework: fromusing impairment scales to measuring disability(functional limitations and activity restrictions) (5, 7)and subsequently handicap (fulfilment of socialroles, mobility, physical independence, occupationalabilities, etc.)

The main advantage of the ICIDH model is thatit provides a common "language" for the numerousand various actors involved. This is probably due tothe resolute shift away from the biomedical model. Itis also incidentally an efficient teaching instrument.The model is applicable to individual assessment aswell as to population surveys and samples (1). It isuseful for prevention and planning. Finally, it avoidsthe usual partitioning between the medical and socialconsequences of disease (9, 10).

The main criticism against the ICIDH model isthe excessive emphasis placed on individual experi-ence as a source and support of the disablement pro-cess, to the prejudice of the role of the environment.Secondly, the temporal or causal sequence cannot beapplied as a fully developed description of the disa-blement experience because it remains difficult todraw a clear dividing line between the variousconceptual elements.

The situational handicap model

Disablement is a process which unfolds with time.More precisely, disablement is a variable dependingon life situations which take place at differentmoments of the life process, and may vary with time.Life is a combination of macro-situations (school,housing, professional activities, sports, family life,etc.) composed of micro-situations (driving, movingin and out, opening doors, windows, cans, etc.),which all constitute a particular environment.

Handicap is the result of the encounter betweendisability and the environmental situations. The dis-ablement process thus includes many aspects of theenvironment analysed in terms of situations.Disablement constitutes a social system functioningin a given environment. The description of the sys-tem corresponds to a description of its structure at agiven time. It is an "open" system, exchanging per-manently and regularly with both the cultural andbiophysical components of the environment (8).

The analysis of the situational disablementinvolves separate analysis of (1) the individual bio-medical, psychological, and social process, (2) thedisabling situations experienced by the person or thegroup, and (3) the environment of the system,assembling cultural, ecological, physical, economic,legal, religious, administrative, and other aspects (3).This implies an internal and an external equilibriumof the system. Situational disablement tends towardsa balance between individual, situational, and en-vironmental inputs and outputs. This balance isnecessarily readjusted from time to time, sometimesfrequently.

The model also implies the integration of theindividual into an environment, and of the environ-ment into the personal experience; but through theconcept of situation, it allows a differentiation of theindividual experiences or systems. Conversely, itwould be inaccurate and even dangerous to reducethe process of disablement exclusively to a situationalexperience, by erasing or ignoring the biomedical andpsychological history of the individual. If such adanger remains theoretical in population surveys forinstance, it might acquire practical importancewhen action is implied, particularly by well-meaningand over-enthusiastic institutions or agencies con-cerned with the social treatment of handicap.

The quality-of-life model

The term "quality of life" means different things todifferent people, reflecting a wide array of knowl-edge, experiences, perceptions, and values. Qualityof life has been an implicit component of medicalcare since ancient times. More recently, the increas-ing participation of patients in health care has movedthe centre of determination of quality of life fromthe physician to the person concerned.

Quality of life has often been a catch-phrasewithout a precise definition. It is usually admittedthat quality of life is a multidimensional concept thatcovers several domains, motivations, or social indi-cators: e.g., functional status (self-care activities,mobility, physical and role activities); disease andtreatment-related symptoms; psychological func-tioning; social functioning; spiritual or existentialconcerns; safety of the environment; adequate hous-ing; decent and guaranteed income; love; respect;freedom, etc. It is usual to single out health-relatedquality of life (HRQOL), which can be defined as"the value assigned to the duration of life as modi-fied by the social opportunities, perceptions, func-tional states, and impairments that are influencedby disease, injuries, treatments, or policies" (11).

Two conceptual frameworks apply to the qualityof life model:

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- one is the ICIDH model (see above), in whichquality of life appears to be closely related to thedimension of handicap;

- the other is a concentric series of circles deter-mining successive stages-from disease in thecentre, to personal functioning, psychologicalstatus, general health perception, and social orrole functioning.The difficulty in this model lies in the interrela-

tionship between the global assessment of quality oflife (e.g., "How are you?") and the separate assess-ments of the components of quality of life. This ledto the design of composite batteries of measurementsincluding generic and disease-specific or condition-specific measures. Whatever the choice, the com-posite measures should be submitted to analysisby components in order to consider the contributionof each concept or category to an overall score.

Some objective and synthetic measurements offitness (defined as the positive nature of physicalactivity), impairments, or functional limitations oractivity restrictions are claimed to approach or evento be representative of the individual's quality oflife. In reality, the term "quality of life" should bereserved for subjective assessments by individuals,which have been proved to be quite reliable. Qualitycomes from the Latin (qualis = such) and means thatwhich makes or helps to make anything such as it is.The life of a person is such as to be defined,assessed, and evaluated by this person first. Thisrepresents the particular operational difficulty of thequality-of-life model.

Operational considerationsAssessment of disability and handicap

The four models of the disablement process identi-fied above complement one another. It is possible todistribute and combine them according to a unifyingmodel (Fig. 1) of the disablement process. In such amodel the role of the environment specific to theperson or group, in its broadest meaning, appears tobe fundamental. It will also be noted that handicapsare multiple and that they may result from one orseveral situations in everyday life, as well as fromone or several biomedical problems. Medical orpsychosocial rehabilitation procedures may alter theprocess in a positive way. This scheme applies tothe developed as well as developing countries.

The following operational guidelines can beestablished from these models.* The ICIDH concept, which represents the clearest,most consistent, cross-disciplinary framework, is abasis for common definitions and language, and a

tool for the analysis of disablement, whatever theobjectives of the analysis (population surveys orcensuses, consequences of diseases, elaboration ofpolicies, etc.)* The ICIDH is a model for surveys of the preva-lence of disablement. Its usefulness for surveysof the incidence of disabling chronic conditionsremains questionable-the linearity of the chain ofcausality (impairment-disability-handicap) remainsto be demonstrated, and the types of transitionsbetween the three dimensions have to be defined.* Disease and impairment are primarily the concernof medical services. Disability and handicap, whichare the fundamental components of the process ofdisablement, are the concern not only of rehabilita-tion clinicians, but also of professionals dealing witheducation, transport, housing, or employment ofdisabled persons, and, above all, of professionals andof the disabled persons themselves.* Diagnosis, biomedical parameters, and healtheconomy indicators are useful but not sufficient forthe analysis of the disablement process and the designof measuring instruments.* Disease and disability have very different defini-tions. The existence of a particular disease, whateverits potential severity, is not always associated with acorresponding disability. The same remark applies tothe comparison of the definitions of impairment anddisability.* Classifying or defining the Healthy Life Expect-ancy measuring instruments and surveys accordingto the most suitable model to which they refer (bio-medical = class I or type I, for instance, etc.) is tobe recommended. This would facilitate the compara-bility of existing materials and the interpretation ofcollected data.

Disability is measurable. Specific measuringinstruments exist, which give a score and a profileof disability for each individual. So it is possibleto determine function-related groups of individuals.Handicap adds a degree of dependence, severity, anddisadvantage to disability. Disability is a predictor ofthe adjustment to social life. Handicap is a compo-nent of the adjustment to social life. Thus, the mostreliable indicators of disability (7) at present are theactivities of daily living and locomotion; the mostreliable indicators of handicap are physical indepen-dence (to be distinguished from autonomy) andmobility. Neither disability nor handicap is value-free, but handicap and quality of life depend veryclosely and singularly on cultural factors.

Handicap and the self-assessed quality of liferelated to it are the combination of three distinctelements:



Fig. 1. A unifying schema of the disablement process. The biomedical model embraces the items on the right (includingetiology, cure, impairment and death). The ICIDH model is focused on the lower half of the diagram (including impairment,disability and handicaps). The situational model covers environment, handicaps and disability. The quality-of-life model isfocused on handicaps only. The factors likely to modify (positively or negatively) the process of disablement are indicated insmaller type.

Population age-composition Place of residence (rural/city)

Disease (ICD)

- Cure

Nodisability

4

Rehabilitation(medical and psycho-social)

Motivation Person

- the consequences of diseases, impairments, anddisabilities;the history (medical and social) of the person;the relationship to the broadly defined environ-ment.Two of these elements are intrinsic to the per-

son, one is extrinsic. The permanent interrelationshipbetween extrinsic and intrinsic elements is complex,and probably varies with situations, tasks, places,etc.

It is of utmost importance to consider what canmodify the sequence of events and factors whichconstitute the disablement process. Some of themodifying factors can be identified (Fig. 1).* The disease itself, as it is classified for instance inthe Intemational Classification of Diseases (ICD).Each etiology, each pathology, obviously has its own

handicapping potential. However, the age, the typeof aging, and some particular frailty also have aninfluence on the disablement process, beyond merelyinitiating it.* The treatment: the type, amount, availability, andside-effects of treatments can alter the course of thedisablement process.

* The survival rate with chronic illnesses or impair-ments.* The motivation to live with an impairment and/orto reduce the disability and the resulting handicaps.Motivation is certainly individual, but may some-times have collective aspects.* Rehabilitation work is aimed at preventing andreducing disability. It includes medical and psycho-social rehabilitation. Its availability and type should


Family

Accessibility y

Availability of community-based rehabilitation

Types of services

Visibility

Availability oftechnical aids

Survival ratewith chronicillnesses

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be considered, with particular attention given to thenecessity and availability of technical aids. Con-siderable differences may exist between andwithin countries. Developed countries usually try torely more heavily on technical aids, which aretheoretically cheaper than human assistance, butwith limited success so far.* Visibility of disabilities and handicaps substantial-ly modifies the whole process. This has led to ageneral underestimation of the handicapping conse-quences of visceral disorders (e.g., urinary and faecalincontinence, cardiac and respiratory disorders). Inthe less developed countries, attention is exclusivelyor primarily devoted to blind or deaf persons, ampu-tees, or those with limb atrophies, for instance.* The types of services available, run by state orlocal govemments, or nongovernmental organiza-tions.* Community-based rehabilitation, proposed byWHO for the developing countries, is also applicableto the developed countries and particularly to elderlypeople. It relies on the social interactions, within ageographic area, of persons with various ties, and notonly on professional medical and psychosocialrehabilitation. The presence of such a supporting net-work permits continuous rehabilitation work to meetindividual needs, and is likely to positively modifythe disablement process.* Accessibility: physical access to the environment,but also to services, benefits, etc. Accessibility is animportant factor in the adjustment to handicaps, ifthese are considered to be the result of the encoun-ters between persons and environments, and a funda-mental component of the disablement process.* Family: marital status, age, size, cohesion of thefamily, composition of the family, degree of accep-tance of the family, the role assigned to the familyby the professionals and the community: all theseconstitute a prime factor for an integrated outcomeof the disablement process (consider, for instance,the problem of families having to cope with cases ofdementia or stroke).* Demographic indicators, such as the populationage-composition, or geographic factors (rural areasvs cities). For example, the handicap resulting fromurinary incontinence is somehow reduced in villagescompared with big cities.

Synthesis and conclusionThe end results of the disablement process can beanalysed in terms of disability and/or handicaps. Thebest indicators are summarized below.

Disability HandicapLocomotionADL (activities of dailyliving) abilities

Communication/cog-nitive skills

MobilityPhysical independence

Social interaction

Among the various dimensions of handicap,mobility is certainly the least culture-bound, butnevertheless remains culture-bound to a certaindegree. Compare, for instance, the mobility requiredand expected from an old lady in Minnesota, Florida,or New York city; or in Denmark and Sicily, twodistant parts of the European Economic Community.Physical independence and, above all, social interac-tion are more subordinate to the behaviours, knowl-edge, know-how, and abilities which constitute theculture of a human group or society.

Differences between countries in the field ofdisablement are based not only on economic devel-opment, but also on biophysical and cultural fea-tures, which determine, for instance, the efficacyratio between human and technical solutions.International comparability calls for simplicity ofquestionnaires (e.g., four items, four questions);comparability within a country needs more compre-hensive, precise, and specific questionnaires.

Scores or their equivalent, although simple touse and versatile, are less meaningful than profiles.Disability and handicaps are based on several com-ponents; the whole disablement process should beapplied to any disease, diagnosis, or symptom withseparate analysis of these components. At each levelof the process, the interacting factors should be takeninto account, and the corresponding prevalence ratescalculated. This exercise, which can be applied toany type of economic development is useful forpolicy-makers as well as economists, clinicians, stat-isticians, or demographers. Some research is beingconducted in this direction, with fruitful results sofar.

The disablement process is thus a synthesis ofmedical, sociological, and anthropological analysesof individuals and their activities.

ResumeMaladie, affections chroniques et sant6:les modbles th6oriques d'analyse duprocessus de handicapLe handicap est le terme d'un processus qui estlie a 1'experience d'une maladie. La sante a etedefinie au depart comme I'absence de maladie.Mais cette definition est trop limitative et mono-



factorielle et s'applique mal en particulier auchamp des maladies et affections chroniques.Dans le domaine des maladies chroniques eneffet, la distinction entre les aspects medicaux etsociaux des affections n'apparalt pas suffisam-ment operationnelle. Plus recemment, la sante aete definie, avec l'Organisation Mondiale de laSante, comme un 6tat de complet bien-etre phy-sique, mental et social, ou comme la capacite del'individu a fonctionner de faqon optimale dansson environnement, ou encore comme une adap-tation de la personne a son environnement ou ason milieu. L'6volution de cette d6finition aucours des trente dernieres annees explique etsoutient les quatre modeles d'analyse theoriquedu processus de handicap qui peuvent etre cou-ramment identifies: le modele biomedical, lemodele de l'Organisation Mondiale de la Sante(Classification internationale des handicaps: defi-ciences, incapacites et d6savantages), le handi-cap de situation et la qualite de vie. Ces quatremodeles sont analyses, et regroup6s dans unmodele unique du processus de handicap. A par-tir de ces modeles conceptuels, quelques conclu-sions peuvent etre tirees sur le plan op6rationnel.La Classification des Handicaps de l'OrganisationMondiale de la Sante constitue certainementactuellement le cadre conceptuel le plus clair, leplus coh6rent et le plus interdisciplinaire, permet-tant un langage et des definitions communes, etconstituant un bon outil pour I'analyse du proces-sus de handicap. 11 est certain qu'il s'agit d'unmodele plus facilement utilisable dans les 6tudesde pr6valence du handicap que dans les etudesd'incidence, et des questions restent encore ensuspens sur les relations des trois dimensions(deficience, incapacit6 et handicap) entre elles, etdans leur relation avec l'environnement et lesmaladies ou affections causales. Les parametresbiomedicaux, les diagnostics, ont une utilite entant que porte d'entree du processus de handi-cap. L'incapacite peut se mesurer et des instru-ments de mesure specifiques existent actuelle-ment, dont la qualite globale s'amelioreregulierement. L'6valuation du handicap et cellede la qualit6 de vie appreci6e par les personnessont la combinaison de trois elements distincts:les cons6quences des maladies, des d6ficienceset des incapacit6s, les ant6cedents medicaux etsociaux de la personne, et la relation de la per-sonne a son environnement ou a son milieu d6fi-nis au sens le plus large. Ces trois 6l6ments dontdeux sont intrinseques a la personne et un extrin-seque, varient en fonction des situations, destaches a accomplir, des cultures, des localisa-tions geographiques, etc. 11 est surtout d'extreme

importance de considerer ce qui peut modifier las6quence des evenements et des facteurs quiconstituent le processus de handicap. On peutciter par exemple la maladie elle-meme, lescaract6ristiques du traitement, le taux de survieavec une deficience ou une affection chronique,la motivation, le travail de reeducation et der6adaptation, la visibilite des incapacit6s et deshandicaps, les types de service disponibles,1'existence de programmes de r6education etreadaptation bas6s sur la communaute, I'accessi-bilite g6nerale, le r6le de la famille, les indica-teurs demographiques tels que la compositiondes Ages d'une population, ou les facteurs g6o-graphiques. Ces 6l6ments susceptibles de modi-fier le processus de handicap peuvent etre dispo-ses le long du schema general d'analyse, selonleur impact respectif, et permettent ainsi de gui-der les interventions de sante publique.

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8. Minaire, P. Le handicap en porte-a-faux. Prospec-tive et sant6, No. 26 (ete): 39-46 (1983).

9. Minaire, P. La classification internationale du handi-cap: avantages et limites. In: Handicap, famille, etsoci6te. Paris, Institut de l'Enfance et de la Famille,1990, pp. 33-38.

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