Health promotion and chronic illness: discovering a new quality of health

Editor: Annette Kaplun

Published in collaboration with The Federal Centre for Health Education, Cologne

WHO Regional Pub! ications, European Series, No. 44

The World Health Organization is a specialized agency of the United Nations with primary responsibility for international health matters and public health. Through this Organization, which was created in 1948, the health professions of some 165 countries exchange their knowledge and experience with the aim of making possible the attainment by all citizens of the world by the year 2000 of a level of health that will permit them to lead a socially and economically productive life.

The WHO Regional Office for Europe is one of six regional offices throughout the world, each with its own programme geared to the particular health problems of the countries it serves. The European Region - embrac­ ing 850 million people living in an area stretching from Greenland in the north and the Mediterranean in the south to the Pacific shores of Russia - is unique in that a large proportion of its countries are industrialized, with ad­ vanced medical services. The European programme therefore differs from those of other regions in concentrating on the problems associated with industrial society. In its strategy for attaining the goal of "health for all by the year 2000 " the Regional Office is arranging its activities in three main areas: promotion of lifestyles conducive to health; reduction of preventable conditions ; and provision of care that is adequate, accessible and acceptable to all.

The Region is also characterized by the large number of languages spoken by its peoples and the resulting difficulties in disseminating information to all who may need it. The Regional Office publishes in four languages - English, French, German and Russian - and applications for rights of translation into other languages are most welcome.

Cover photograph by Olivier Dassault.

HEALTH PROMOTION AND CHRONIC ILLNESS

To M. and S. to whom I owe beautiful memories of love, inner harmony and serenity along a path where the shadow of illness brought "another" light.

AK

WHO Library Cataloguing in Publication Data

Health promotion and chronic illness : discovering a new quality of health / editor : Annette Kaplun ; editorial advisers : Jan Branckaerts. Rosmarie Erben. Helmut Milz

(WHO regional publications. European series ; No. 44)

1. Health promotion 2. Chronic disease 3. Health services - trends I. Kaplun. Annette 11. Series

ISBN 92 890 1307 9 ISSN 0378-2255

(NLM Classification : WA 59())

f-f' World Health Organization ~ ' · f Regional Office for Europe ~ ,~ Copenhagen

HEALTH PROMOTION AND CHRONIC ILLNESS Discovering a new quality of health

Published in collaboration with The Federal Centre for Health Education, Cologne

Editor: Annette Kaplun

Editorial advisers: Jan Branckaerts, Rosmarie Erben, Helmut Milz

WHO Regional Publications, European Series, No. 44

ISBN 92 890 1307 9 ISSN 0378-2255

The Regional Office for Europe of the World Health Organization welcomes requests for permission to reproduce or translate its publications, in part or in full. Applications and enquiries should be addressed to the Office of Publications. WHO Regional Office for Europe, Schcrfigsvej 8, DK-2100 Copenhagen 0 , Denmark, which will be glad to provide the latest information on any changes made to the text, plans for new editions, and reprints and translations already available.

© World Health Organization 1992

Publications of the World Health Organization enjoy copyright protection in accordance with the provisions of Protocol 2 of the Universal Copyright Con­ vention. All rights reserved.

The designations employed and the presentation of the material in this publication do not imply the expression of any opinion whatsoever on the part of the Secretariat of the World Health Organization concerning the legal status of any country, territory, city or area or of its authorities, or concerning the delimitation of its frontiers or boundaries.

The mention of specific companies or of certain manufacturers' products docs not imply that they are endorsed or recommended by the World Health Organization in preference to others that arc not mentioned. Errors and omissions excepted, the names of proprietary products are distinguished by initial capital letters.

The views expressed in this publication are those of the contributors and do not necessarily represent the decisions or the stated policy of the World Health Organization.

This book was set in page on the computer system of the ATELIERS FOYER-HANDICAP

Acknowledgements The editors express their appreciation to :

the AUTHORS of the various background documents and papers whose collaboration was extremely helpful

Mr Hans WEIDMANN, in charge of the Foyer-Handicap computer department Mrs Mirjam NEWMAN-STAAL, for her help in typing and proofreading.

PRINTED IN SWITZERLAND

CONTENTS

Foreword, J. E. Asva/1 ............................. .. ............................... .. .. ..... ... ............ 1x

Preface, Elisabeth Pott ........ ... ............. .. .. .. .... .... .... ......... ....... .. ...... ......... ...... ..... x1

Introduction, Rosmarie Erben .............. ......... .. ... ... .... .... .. ........ .... ... ....... .. ....... . xvi

1. Conceptual framework........................................................... ... ..... ............ I

The Ottawa Charter for Health Promotion.................... .. .............. .. ....... 3

Enhancing health potential, Ilona Kiekbusch................... .. .. ........ .. .. ....... 8

Coping with the stress of illness, Richard S. Lazarus.... ..................... ..... 11

" Healthy ill people": social cynicism or new perspectives? Helmut Milz......... ......... ...... .. ....... .... ...... ..................... ......... .. ... ... .... ...... 32

2. Recovery from heart attack : self-reliance, self-help and self-determination ....... .. ....... ....... ...... ........ .. ......... ...... .. ................ ......... ... .. . 41

The rehabilitation process : issues and innovative approaches, Hanneli Dohner & Stephan Gorres ... ................... ............................... 43

Effecting institutional change, Bernhard Badura........... .. .......... ...... ....... 73

Concluding remarks, Bernhard Badura................................ .............. ...... 84

3. Cancer: towards innovative health promotion approaches.... .. ............ 87

Health promotion and cancer care, Millard Waltz ........... .. ....... .............. 89

Emerging forces in cancer care, Michael Lerner .... .. ........... .. ........... .. ... .. 115

Conceptual views on quality of life, 1¢rn Beckmann & Gert Ditlev ...... 133

Concluding remarks, Michael Lerner ..... .... ....... ..... .. .. .... ... ....... .... .. .. ...... .. 138

4. A new understanding of chronic pain .... .......................... .. .... .. .......... ...... I 41

The care of chronic pain patients, Hanne Seemann .............. .......... ... ... .. 143

Pain: a kaleidoscope of ideas, concepts and approaches.. .. .. ....... .. ... .. ... 173 Manfred Zimmermann, Rieke Alten, David Field, Mariel A.E. Vrancken, Dieter Kallinke, Hanne Seemann, Robert Lafaille & H. Christo[ Miiller-Busch

Challenges and choices, David E. Bresler .. ........ .......... .. .. .. .............. .... .... 201

Concluding remarks, Annette Kaplun .......... .. ... .. .... .. ...... .. .. ...... ...... .. .... .... 222

5. Building healthy public policies ..... .. ................................................... ..... 227

Canada's framework for health promotion and chronic illness, Barbara Naegele ........................ .. ................................. .. ... .. ....... .. ......... 229

The gradual process of resuming work, Wilfried Berg & Sabine Rinck ... 232

vi Contents

A ten-point plan for meeting carers' needs, Ann Richardson ............... 235

Concluding remarks .................................................................................... 240

6. Creating supportive environments ............................................................ 241

The workplace and the community, Horst Noak ............ ..... .... ............. .. . 243

A" heart group " in the work setting, Hauke Engelhardt ....................... 245

Foyer-Handicap: a warm, supportive environment, Annette Kaplun .... 248

Healthy foods, Sigrid Arndt ....................................................................... 251

Chronic illness : a media perspective, C. Michael Shaw .......................... 256

Concluding remarks ........................................... ... ......................... .. .......... 262

7. Strengthening community action ...................... .. ... .. .... ............................. 263

Families and self-help groups as key actors, Robert Anderson ............. 265

The Munich Health Park, Mark Schmid-Neuhaus ..... ............................. 267

"Take Heart ": former heart patients form support groups, George Morland ........................................................ 273

Place of residence as a health resort for rheumatic patients, Helmut Breitkopf & Vera Grunow-Lutter ........................................... 276

Linking cancer after-care with everyday life, Iris Bartkowiak............... 283

No-one need be alone with cancer, Denise Winn & Mike Bieber .......... 286

Concluding remarks ..................................... .... ..... ...................................... 290

8. Developing personal skills ......................................................................... 291

An education programme for patients with chronic pain, Carmen Franz .... . ......... ..... ....... .................... ......... .. . ..... .. ......... .............. 293

Families with a handicapped child: dealing with pain, Joseph Lebeer ... 297

Clay modelling as an integrative therapy, Michael Rinast ...................... 302

Coping with the pain of chronic polyarthritis, Uwe Prii.mel, Silke Eggerichs & Bettina Bunge .......................................................... 307

Psychophysiological therapy for migraine sufferers, Michael Falkenstein & Helga Falkenstein ........................................... 309

Visualization in cancer group therapy, Iris Bartkowiak ........... ............... 312

A new form of therapy for heart patients, Wolf-Dieter Fischer.... ........ .... 318

The Feldenkrais method : awareness through movement, Ulrike Apel... 324

A health diary for the chronically ill, Hermann Baert, Peter Gielen & Mieke Smet ............................. .......... ............................ 328

Concluding remarks.................................................................................... 332

9. Reorienting health services: training .................. ..................................... 333

Medical training : a serious deficit, Rieke A/ten ....................................... 335

Training: needs and possibilities, Robert Lafaille ................................... 336

Contents vii

A new approach to medical education, Robert Wiedersheim & H. Christof Millier-Busch .............................. 351

Health promotion for health professionals, Rudy PC. Rijke & Johanna Rijke-de Vries ......................................... 354

Developing professional knowledge and skills, Tom Heller.................. 356

Concluding remarks .................................................................................... 360

10. Reorienting health services: health research .......................................... 361

Self-help groups: their impact and potential, Jan Branckaerts & Ann Richardson .................................................... 363

Effect of contacts between cancer patients on their psychosocial problems, H. W van den Borne, J. F A. Pruyn & W J. A. van den Heuvel .................................................................... 368

The quality of life of cancer patients, Hanneke de Haes ........................ 372

Concluding remarks .................................................................................... 375

11. Reorienting health services: health care ................................................. 377

Common concepts in conventional and complementary medicine, George Lewith ....................................................................................... 379

Ayurveda: a long tradition of prevention, Hans Schaffter..................... 384

Helping the patient sing his own song, Marina Schnurre ....................... 388

The duo-formula, Maria A. Bremer Schulte............................................. 396

The Commonweal cancer help programme. Michael Lerner ................ 399

An interdisciplinary approach to pain therapy, Thomas Flater ............. 403

Psychological treatment in medical practice, Hans P. Rehfisch ............. 405

What do the patients think ?, Ina Alewell ................................................. 408

Concluding remarks .................................................................................... 410

12.Moving into the future ............................................................................... 411

A call to all those with responsibility ........................................................ 413

A dynamic vision of health, Annette Kaplun ........................................... 415

"Health is created and lived by people ... " .............................................. 423

REFERENCES ..................................................................................................... 425

INDEX OF AUTHORS .......................................................................................... 458

FOREWORD J.E. Asva/1

Chronic illness is a condition that is a much larger problem in Europe than is often realized. About one person in ten lives with a chronic illness or disabil­ ity and, with the rapidly growing number of the very old, this proportion is increasing. Chronic illness often inflicts much suffering on the individual and the family, and it represents a major challenge for the health care system and society in general.

People with chronic disease and disability face a triple problem. One is the loss of basic function, and the chronic suffering from pain and other symptoms that are the direct result of the illness or accident. Another prob­ lem is due to secondary consequences of the predicament as regards the abil­ ity of individuals to function as socially and economically productive mem­ bers of society. This is directly linked to their objective disability and, indi­ rectly, to the attitude of society. As a rule, there is a tendency to underrate the possibilities for a disabled or chronically ill person to contribute actively - albeit in a modified manner - to the economic and social productivity of so­ ciety. The third problem - by no means the least difficult - is the negative im­ pact of the situation with regard to the self-esteem, hope and drive of the chronically ill or disabled person himself or herself. All these factors contrib­ ute to the downward spiral of inactivity and apathy and to the feeling of helplessness and uselessness that often threatens the quality of life of those who are chronically ill and disabled.

In 1984 the 32 Member States of WHO's European Region adopted a new common health policy and set 38 targets to be reached by all the coun­ tries in the following 10-15 years. Adopting the slogan " Adding life to years'; target two states: " By the year 2000, people should have the basic op­ portunity to develop and use their health potential to live socially and econ­ omically fulfilling lives " and target three stipulates: " By the year 2000, dis­ abled persons should have the physical, social and economic opportunities that allow at least for a socially and economically fulfilling and mentally crea­ tive life."

Putting such ideas into practice requires not only a different attitude towards the disabled on the part of society; it also demands that very practi­ cal measures be pursued with vigour at the national level and in every local community, by the health care sector and many other sectors, by public and private institutions and organizations, and by the chronically ill and dis­ abled themselves.

Encouraging developments have taken place in recent years in a num­ ber of countries where organizations of the chronically ill and disabled have refused to accept the old passive labels that society had given them. These organizations have forced through a series of innovative programmes that

x Foreword

have helped to bring a new understanding of how each individual's potential for a healthy life can be enhanced - also for those whose life situation has been afflicted by chronic disease and disability. One has come to realize that through appropriately selected sports, activities to strengthen social net­ works, special counselling, better planned housing, sensibly designed public transport and other aspects of the working and living environment, the qual­ ity of life can be substantially improved for the chronically ill and disabled.

However, such programmes and such attitudes have not yet taken firm hold throughout Europe and there is a pressing need to spread knowledge and create motivation for changes in our part of the world. In order to clar­ ify the complex needs of people with chronic illness and to outline practical possibilities for action from health and other institutions, the WHO Region­ al Office for Europe and one of its collaborating centres, the Federal Centre for Health Education in Cologne, organized a major International Sympo­ sium on Health Promotion and Chronic Illness. I hope that this publication - which is an outcome of the Symposium - will strengthen the resolve of countries to take action that can improve the quality of life for the millions of people who, in Europe, not only struggle with the immediate effects of chronic disease and disability, but are still so often denied opportunities for exploiting fully their own potential for healthy living and a fulfilling life.

PREFACE Elisabeth Pott

The subject of health promotion and chronic illness appears first as contra­ dictory, illogical, and even inconceivable. Does illness not exclude health? It is extremely difficult to achieve a consensus on the meaning of health between the various professional groups as well as between professionals and lay persons. But when it comes to health promotion, it is even more diffi­ cult to reach an understanding, especially with regard to its implementation within the health system.

The first International Conference on Health Promotion, organized by WHO in 1986 in Ottawa, was concerned with the need to establish defini­ tions and outline strategies. Worldwide experiences in health promotion were evaluated, compressed into principles, and became the essence of the Ottawa Charter, which expresses the philosophy of health promotion and provides an orientation for action and evaluation standards.

Two aspects of this Charter are of particular significance when dealing with chronic illness:

first, the concepts of self-determination and participation, both at the level of the individual and of the community; these are expressed in three principles: advocate, enable and mediate;

second, the ecological concept of health which calls for healthy public policies, supportive environments, strengthened community action, the development of personal skills and the reorientation of health services.

These various factors reciprocally influence each other and facilitate the achievement of health.

A "first" in health promotion

The Bad Honnef Symposium represents the first major international event in this new focus of health promotion on chronic illnesses. It brought to­ gether 84 participants from twelve European countries, Canada and the USA, representing a broad spectrum of disciplines: medical practice (in­ cluding specialists in cardiology, rheumatology, oncology and chronic pain), epidemiology, psychology, physiology and physical medicine, as well as poli­ cy makers and administrators, researchers, medical journalists and repre­ sentatives of governmental and nongovernmental organizations and self­ help groups.

The meeting was part of the continuing process of programme develop­ ment in health promotion in the WHO European Region, involving a long

xii Preface

series of international seminars and workshops and research dealing with lifestyles, self-help and health promotion. Many of these activities have been organized in collaboration with the Federal Centre for Health Education. This is linked to the fact that health promotion has been on the list of prior­ ity concerns in the Federal Republic of Germany for quite some time.

The workshop on " Healthy Cities •: held in Dusseldorf two weeks prior to the conference on chronic illness, is one outcome of this interest. It is re­ lated to a broad public health project initiated in 1982 with the purpose, in particular, to intensify health education I health promotion in public health services and give a new impetus to the use of positive models and innovative approaches. Its focus is on community and lay participation, on social and environmental factors, and on the implementation of new strategies at differ­ ent action levels. These principles arc in full harmony with those of health promotion as expressed in the Ottawa Charter.

The working world is another area where the Federal Republic of Ger­ many has been keen to promote health promotion. The international con­ ference organized jointly on this subject in 1985 by WHO and the Federal Centre served to emphasize the considerable gaps which exist in this area with regard to the role of stress and the influence of psychosocial factors at the workplace.

The conference also highlighted some very promising initiatives imple­ menting a holistic approach to health.

A long outcome

Health promotion has therefore a long history, not only in the Federal Re­ public of Germany but in many other countries as well. The Ottawa Charter is the outcome of these trials and innovative approaches which show clearly that health promotion :

is based on the concept of health as defined by WHO, i.e. physical, men­ tal and social well-being ;

stems from a positive view of health which encompasses social, personal and biological factors ;

considers health as a resource for everyday life - not the objective of liv­ ing ; and last but not least,

provides the broad strategies needed to achieve health for all by the year 2000.

These concepts take us beyond prevention, health protection and health education. Their central focus is on compounding individual approaches with structural measures, conventional health care with self-help and lay care, and psychosocial therapies with medical treatment. The active participation of the public, rather than its education, is seen as the key factor.

Preface xiii

Enabling people to live a full life

Health education has considerably altered its style in recent years - from au­ thoritarian to liberal, from deterring to positive. Yet, health itself is still often seen as an objective that can be best approached through fitness programs, ideal weight and dieting packages, and more recently through the aerobics movement.

Starting from a broader context, health promotion aims to enable peo­ ple to live a full life rather than to live for health. This implies feelings of self-worth and self-awareness, the capacity to be active and take decisions, the development of personal skills, the provision of support on a person-to­ person basis or through a small network, and an environment conducive to health. In this perspective, health promotion becomes not only possible but necessary to cope with chronic illnesses.

The current concern with chronic illness is related to the steadily grow­ ing impact of this type of disease on the population. The greater the number of persons reaching the limits of life expectancy which is regarded as biologi­ cally possible, the greater the importance of" adding life to years•: rather than "years to life" and of improving health and the quality of life. Policy and practice should no longer aim exclusively at protecting the healthy against illness in old age, but also promote an active and independent life­ style for those already ill.

Health promotion of the chronically ill shows clearly the close link that exists between prevention, health education and health care, as well as the need to develop personal skills and, simultaneously, to create a supportive environment. In this perspective, a number of critical issues such as unequal health opportunities for different social groups, the influence of psychologi­ cal and social factors on the occurrence and development of illness, and the impact that the workplace may have on health should no longer be ignored in favour of an individualistic health education approach.

To achieve these broad goals, we need to be concerned not only with the findings of medical research but also with those of epidemiology, of social epidemiology and of psychoneuroimmunology, which should be more actively applied in practical work. To be sure, knowledge derived from psychosomatic research is being more widely discussed today, both in pub­ lic and medical circles, but this discussion has not been followed by action with regard to health promotion nor has it generated new approaches and therapies.

Four key issues

Which are the deficiencies in the provision of care that are felt most strongly by the chronically ill, and which are the factors with the most influence on the quality of life? These questions remain to be answered.

xiv Preface

At present, the situation of the chronically ill is characterized above all by the fact that therapies applicable to acute illness are used for the treat­ ment of chronic illness. This means, on the one hand, that the symptoms of the illness are treated instead of the person, and on the other, that the treat­ ment aims only at curing instead of focusing on how to help the patient live with a long-lasting illness.

Hopes are often placed in the discovery of the miracle drug that will " one day" provide a cure. This attitude, rooted in the belief that research will ultimately solve the problem, is shared by many patients and doctors. But it overlooks the fact that the patient is much more likely to live with a chronic illness for the rest of his or her life. This has a number of important consequences.

First, a chronically ill person - even more than a person suffering from an acute illness - needs to know how the illness will develop and what it will mean in his or her life. Psychological and psychosomatic knowledge provides a theoretical basis for intervention. However, as already mentioned, there is little practical application of this knowledge.

Secondly, the chronically ill person has to learn to accept the illness. This requires a considerable change with regard to the quasi-obligation, in our society, to be in "good health" - a concept which frequently narrows down to the ability to perform, to work, and to enjoy life. This narrow con­ cept, mainly concerned with productivity, does not do justice to the wish, deeply felt by chronically ill persons, to be treated as subjects, as individuals, as suffering human beings. We need to remember that health represents other values as well.

The chronically ill person has a need, and indeed a right , to receive the kind of support that will enhance these other values. This involves a change in our perception of illness, in our attitudes. and it requires the use of health promotion approaches.

Thirdly, the chronically ill person needs support to cope with the restric­ tions, the isolation and the disruption of social contacts resulting from a chronic illness ; otherwise, further illnesses may develop . The provision of small networks , social support and self-help is a key requirement for the quality of life of the chronically ill, who depend in a particular manner on voluntary care and personal contact. These are important health promotion approaches.

Finally, we must overcome the lack of cooperation and coordination between the many different institutions working within the health and social security systems. At present, the support and care of the chronically ill is made considerably more difficult in many countries by this situation . The fact that protective care and institutionalized treatment represent still today the predominant health approach is a matter of serious concern. Ref­ erence needs to be made here to the concepts of the Ottawa Charter, partic­ ularly those concerned with enabling people to achieve their fullest health potential.

Preface xv

A clear objective

A number of factors which have a negative influence on the quality of life of the chronically ill require our full attention. They include :

first and foremost , the social norms that exist regarding health and the resulting expectancy that everybody has to be in " good health •: the word health being equated here with the capacity to perform, to work and to enjoy oneself ;

expectations from the medical profession linked to the progress of med­ icine, according to which chronic illnesses should no longer exist;

the lack of support given to the chronically ill for coping with fears, so­ cial isolation, and helplessness; and

the inability of the health system to react adequately to the situation.

Fundamentally, we should all take the view that even a chronically ill person has a considerable health potential and that this potential should be awakened, strengthened and promoted. A person suffering from an illness should not be reduced to the illness itself, but taken seriously as a human be­ ing in a state of illness. This book provides some sound suggestions on ways to achieve this objective.

INTRODUCTION Rosmarie Erben

Persons suffering from a chronic illness are more than just " chronically ill people ''. Their daily life has a different starting point from which they not only perceive themselves and their environment but are in turn perceived by this environment.

Chronic illness represents a special challenge for the persons affected; for their families and social reference groups; and for the various environ­ ments and institutions concerned - this means the community and the work­ place, as well as the medical and social services.

The International Symposium on Health Promotion and Chronic Illness was called by the Federal Centre for Health Education and the Regional Of­ fice for Europe of the World Health Organization to critically assess the ex­ perience and knowledge available to meet the rapidly growing needs of peo­ ple suffering from chronic illness and suggest ways and means to strengthen their coping capacity and support those who care for them.

Assessing the needs

How can we best help to develop and promote the existing health potential of people suffering from chronic illness?

How can their changing needs be met with regard to social relations, so­ cial recognition, nutrition, activity, affection and care?

How is it possible, simultaneously, to respect and promote their personal development and independence as vital elements of their health?

Many of those affected by chronic disease have sought and developed quite individual ways of achieving a new and different quality of life. The rapid establishment of self-help groups in the medical field has been decisive­ ly influenced by people with chronic health problems.

Public institutions responsible for disease prevention and health care have hardly been able to keep pace with this development. Chronically ill people require more than straightforward welfare and institutional care . They need, in equal measure, information and practical guidance in self­ help as well as support for their right to quality of life despite their" life­ determining disease' '.

Chronic illness only becomes a destructive stigma when society reduces such afflicted persons collectively to the status of" the chronically ill' '.

The aim of the Symposium was therefore:

to clarify the complex needs of people with chronic illness, specifically those with chronic pain conditions (with emphasis on rheumatic dis­ eases), cancer or recovering from a heart attack;

Introduction xvii

to make a broad assessment of the personal and social implications of these diseases, as well as of the various options for health promotion;

to identify corresponding needs for action from health and other institu­ tions exercising social responsibility in the community.

The family and self-help groups, the workplace, the community, and the health care system were selected as areas from which a maximum of experi­ ments could currently be drawn. With these objectives in mind, the Federal Centre involved a large number of individuals, groups and organizations in the preparatory phase. This resulted in a most stimulating input from some 80 sources in Europe and North America, providing conceptual statements, overviews of current practice regarding the management of chronic pain. can­ cer and myocardial infarction, and specific examples of innovative projects illustrating health promotion in action. The programme of the Symposium provided experiences on four levels.

First, the plenary sessions - starting with statements on the programme perspectives of WHO in the field of health promotion and reflections on health promotion and chronic illness, they went on to present recent findings and new concepts with regard to coping with the stresses of illness, chronic pain, complementary cancer therapies, institutional changes in relation to heart patients, the concept of the " healthy ill person·: and the need for fur­ ther education of physicians and medical personnel.

Second, a series of working groups enabled participants to exchange ex­ periences in health promotion with regard to chronic pain, cancer and coro­ nary heart disease, while a further session of working groups considered sup­ port activities in various settings : the medical care system; families and self­ help groups; the working world and the community.

The third aspect of the Symposium comprised workshops which provid­ ed for direct, personal experience in various complementary therapies, i.e. Feldenkrais exercises, visualization exercises for cancer patients, body per­ ception in the treatment of myocardial infarction , and discussions on the underlying principles of alternative medicine.

The fourth dimension of the meeting - aimed at promoting interaction - was experienced in the Bazaar, an oriental market place where 24 innovative health promotion projects were presented by participants and invited groups on the second day of the Symposium. This particular feature of the meeting merits a special mention. Inviting participants to "stroll. chat and make con­ tacts·: it provided the kind of informal and relaxed atmosphere that is highly conducive to interaction. It started at 4 pm with a press conference and ended at 10.30 pm, officially ... but at midnight people were still discussing. arguing. explaining, experimenting with art therapy or with neuro-linguistic program­ ming, obviously enjoying the experience and learning very much from each other. An open session entitled "Practice and idea exchange" also served as an "ice-breaker" at the beginning of the Symposium and enabled participants to meet informally and discuss their work and personal experiences.

xviii Introduction

A growing network

Participants in the Bad Honnef meeting unanimously adopted at the closing session a statement which outlines a strategy for action and pinpoints areas requiring urgent attention. They also voiced the feeling that the Symposium could well serve as a model for others concerned with similar problems at the national , regional or even local levels . It provided a good framework for stimulating the exchange of experiences and creating interlinkages between large numbers of professionals, groups and organizations in a position lo in­ fluence the course of events.

With this book, this support-and-action network should greatly extend its scope and involve many more in the movement to improve the quality of life of persons suffering from chronic illness.

1 .

CONCEPTUAL FRAMEWORK

STRENGTHEN COMMUNITY ACTION

ENABLE

MEDIATE

ADVOCATE

REORIENT

DEVELOP PERSONAL

SKILLS

CREATE SUPPORTIVE

ENVIRONMENTS

HEALTH SERVICES

eu,lD o\.'c.." ltf,tL THY PU8l\C \'

THE OTTAWA CHARTER FOR HEALTH PROMOTION

The first International Conference on Health Promotion, meeting in Ottawa this 21st day of November 1986, hereby presents this CHARTER for action to achieve Health for All by the year 2000 and beyond.

This conference was primarily a response to growing expectations for a new public health movement around the world. Discussions focused on the needs in industrialized countries, but took into account similar con­ cerns in all other regions. It built on the progress made through the Declaration on Primary Health Care at Alma Ata, the World Health Organization's book on Targets for Health for All, and the debate at the World Health Assembly on intersectoral action for health.

Health promotion

Health promotion is the process of enabling people to increase control over, and to improve, their health. To reach a state of complete physical, mental and social well-being, an individual or group must be able to identify and to realize aspirations, to satisfy needs, and to change or cope with the environ­ ment. Health is, therefore, seen as a resource for everyday life, not the objec­ tive of living. Health is a positive concept emphasizing social and personal resources, as well as physical capacities. Therefore, health promotion is not just the responsibility of the health sector, but goes beyond healthy lifestyles to well-being.

Prerequisites for health

The fundamental conditions and resources for health are peace, shelter, edu­ cation, food, income, a stable ecosystem, sustainable resources, social justice and equity. Improvement in health requires a secure foundation in these ba­ sic prerequisites.

Advocate

Good health is a major resource for social, economic and personal develop­ ment and an important dimension of quality of life. Political, economic, social, cultural, environmental, behavioural and biological factors can all favour health or be harmful to it. Health promotion action aims at making these conditions favourable through advocacy for health.

3

4 Conceptual framework

Enable

Health promotion focuses on achieving equity in health. Health promotion action aims at reducing differences in current health status and ensuring equal opportunities and resources to enable all people to achieve their fullest health potential. This includes a secure foundation in a supportive environ­ ment, access to information, life skills and opportunities for making healthy choices. People cannot achieve their fullest health potential unless they are able to take control of those things which determine their health. This must apply equally to women and men.

Mediate

The prerequisites and prospects for health cannot be ensured by the health sector alone. More importantly, health promotion demands coordinated ac­ tion by all concerned: by governments, by health and other social and eco­ nomic sectors, by nongovernmental and voluntary organizations, by local au­ thorities, by industry and by the media. People in all walks of life are in­ volved as individuals, families and communities. Professional and social groups and health personnel have a major responsibility to mediate between differing interests in society for the pursuit of health.

Health promotion strategies and programmes should be adapted to the local needs and possibilities of individual countries and regions to take into account differing social, cultural and economic systems.

Health promotion action means:

Build healthy public policy

Health promotion goes beyond health care. It puts health on the agenda of policy makers in all sectors and at all levels, directing them to be aware of the health consequences of their decisions and to accept their responsibilities for health.

Health promotion policy combines diverse but complementary ap­ proaches including legislation, fiscal measures, taxation and organizational change. It is coordinated action that leads to health, income and social pol­ icies that foster greater equity. Joint action contributes to ensuring safer and healthier goods and services, healthier public services, and cleaner, more en­ joyable environments.

Health promotion policy requires the identification of obstacles to the adoption of healthy public policies in non-health sectors, and ways of remov­ ing them. The aim must be to make the healthier choice the easier choice for policy makers as well.

The Ottawa Charter for Health Promotion 5

Create supportive environments

Our societies are complex and interrelated. Health cannot be separated from other goals. The inextricable links between people and their environment constitutes the basis for a socioecological approach to health. The overall guiding principle for the world, nations. regions and communities alike, is the need to encourage reciprocal maintenance - to take care of each other, our communities and our natural environment. The conservation of natural re­ sources throughout the world should be emphasized as a global responsibility.

Changing patterns of life, work and leisure have a significant impact on health. Work and leisure should be a source of health for people. The way society organizes work should help create a healthy society. Health promo­ tion generates living and working conditions that are safe, stimulating, satis­ fying and enjoyable.

Systematic assessment of the health impact of a rapidly changing envir­ onment - particularly in areas of technology, work, energy production and urbanization - is essential and must be followed by action to ensure positive benefit to the health of the public. The protection of the natural and built en­ vironments and the conservation of natural resources must be addressed in any health promotion strategy.

Strengthen community action

Health promotion works through concrete and effective community action in setting priorities, making decisions, planning strategies and implementing them to achieve better health. At the heart of this process is the empower­ ment of communities, their ownership and control of their own endeavours and destinies.

Community development draws on existing human and material re­ sources in the community to enhance self-help and social support. and to de­ velop flexible systems of strengthening public participation and direction of health matters. This requires full and continuous access to information, learning opportunities for health, as well as funding support.

Develop personal skills

Health promotion supports personal and social development through pro­ viding information, education for health and enhancing life skills. By so do­ ing, it increases the options available to people to exercise more control over their own health and over their environments. and to make choices conducive to health.

Enabling people to learn throughout life, to prepare themselves for all of its stages and to cope with chronic ill ness and injuries is essential. This has

6 Conceptual framework

to he facilitated in school, home, work and community settings. Action is re­ quired through educational, professional, commercial and voluntary bodies, and within the institutions themselves.

Reorient health services

The responsibility for health promotion in health services is shared among individuals. community groups. health professionals, health service institu­ tions and governments. They must work together towards a health care system which contributes to the pursuit of health.

The role of the health sector must move increasingly in a health promo­ tion direction. beyond its responsibility for providing clinical and curative services. Health services need to embrace an expanded mandate which is sensitive and respects cultural needs. This mandate should support the needs of individuals and communities for a healthier life, and open channels between the health sector and broader social, political, economic and physi­ cal environmental components.

Reorienting health services also requires stronger attention to health re­ search as well as changes in professional education and training. This must lead to a change of attitude and organization of health services, which refo­ cuses on the total needs of the individual as a whole person.

Moving into the future

Health is created and lived by people within the settings of their everyday life; where they learn, work, play and love.

Health is created by caring for oneself and others, by being able to take decisions and have control over one's life circumstances, and by ensuring that the society one lives in creates conditions that allow the attainment of health by all its members.

Caring, holism and ecology are essential issues in developing strategies for health promotion. Therefore, those involved should take as a guiding principle that. in each phase of planning, implementation and evaluation of health promotion activities, women and men should become equal partners.

Commitment to health promotion

The participants in this conference pledge:

to move into the arena of healthy public policy, and to advocate a clear political commitment to health and equity in all sectors;

The Ottawa Charter for Health Promotion 7

to counteract the pressures towards harmful products, resource deple­ tion, unhealthy living conditions and environments, and bad nutrition; and to focus attention on public health issues such as pollution, occupa­ tional hazards, housing and settlements;

to respond to the health gap within and between societies, and to tackle the inequities in health produced by the rules and practices of these societies;

to acknowledge people as the main health resource; to support and en­ able them to keep themselves, their families and friends healthy through financial and other means, and to accept the community as the essential voice in matters of its health, living conditions and well-being;

to reorient health services and their resources towards the promotion of health; and to share power with other sectors, other disciplines and most importantly with people themselves;

to recognize health and its maintenance as a major social investment and challenge; and to address the overall ecological issue of our ways of living.

The conference urges all concerned to join them in their commitment to a strong public health alliance.

Call for international action

The Conference calls on the World Health Organization and other interna­ tional organizations to advocate the promotion of health in all appropriate forums and to support countries in setting up strategies and programmes for health promotion.

The Conference is firmly convinced that if people in all walks of life, nongovernmental and voluntary organizations, governments, the World Health Organization and all other bodies concerned join forces in introduc­ ing strategies for health promotion, in line with the moral and social values that form the basis of this CHARTER, Health For All by the Year 2000 will become a reality.

ENHANCING HEALTH POTENTIAL

Ilona Kiekbusch

Health promotion is concerned with enabling people to maximize their health potential. From whatever point one starts in life, whether as a healthy baby or as somebody who has already gone through many life crises and has become chronically ill, health and well-being rnn be enhanced and developed. Such is the strong belief underlying the experiences and research reported in this book.

It stems from the Charter on Heallh Promotion, culminating point of the First International Conference on Health Promotion held in Ottawa, 17-21 November 1986. The Conference marked a new landmark in public health. It was jointly organized by the World Health Organization, Health and Welfare Canada and the Canadian Public Health Association, and brought together 212 participants from 18 countries - lay, health and other professional work­ ers, representatives of governmental, voluntary and community organiza­ tions, politicians, administrators, academics and practitioners.

In adopting the Charter, participants made very clear the need to mobil­ ize all resources towards the goal of health for all and the fact that this goal cannot be achieved by the health sector alone. Health promotion demands coordinated action by governmental and voluntary organizations, by local authorities, industry, and the media. All sectors share responsibility in raising individual and collective levels of health.

This broad outlook is an outcome of the discussions on lifestyles which originated at the WHO Regional Office for Europe a few years ago and were followed by a series of stimulating discussions on self-help, the work environ­ ment, healthy cities and finally health promotion and chronic illness. This continuity in thinking, research and action is significant.

Towards a new public health movement

The health promotion concept, with its focus on personal participation, social and cultural factors and environmental conditions, represents a definite de­ parture from the medical model. It puts health on the agenda of policy mak­ ers in all sectors and at all levels, it states that health aspects should always be taken into account in shaping public policy, and reminds those who shape it that they are accountable for the health consequences of their decisions.

Health promotion calls for efforts to generate living and working condi­ tions that are safe, stimulating, satisfying and enjoyable, i.e. creating sup­ portive environments.

Enhancing health potential 9

It urges a redelegation of responsibilities in health through the strength­ ening of community action. Developments in the community should also serve to define policy priorities: policy cannot he shaped in an ivory tower; it must emerge from a constant interaction with the community.

Health promotion stresses the importance of developing personal skills and enabling people to learn throughout life, to prepare themselves for all of its stages, and to cope with chronic illness and injuries.

Last hut not least, it calls for a reorientation of health services: they need to become once again part of the community responsibility and to be sensi­ tive to the total needs of the individual as a whole person.

Three key strategies

Health promotion is "the process of enabling people to increase control over, and to improve, their health·: It claims the importance for individuals and groups to be able "to identify and to realize aspirations, to satisfy needs and to change or cope with the environment" if a state of complete physical, mental and social well-being is to be achieved.

This concept highlights health as an essential element of the quality of life, both personal and social, which can be promoted at every stage of life. It also reflects the concern that health should not be misunderstood for health­ ism and the need to be very realistic and look at health in the context of people's everyday life. Health is seen as a positive concept emphasizing so­ cial and personal resources as well as physical capacities.

Three strategies are at the heart of health promotion:

enabling action;

mediating action; and

advocating the interests and needs of people.

These three strategies are of particular importance in relation to chronic illness where the enabling role is needed to maximize the health potential of the persons affected; the advocating role, to promote the rights of those who do not have their full physical capacity; and the mediating role , to establish closer communication between the chronically ill and the part of society that defines itself as healthy.

Enhancing people's capacity to cope: the real challenge

The concept of health promotion for people with chronic illness is still in its infancy in medical practice. Public institutions responsible for disease pre­ vention and health care have usually a very negative approach to chronic ill-

10 Conceptual framework

ness. Even at the level of health policies, many health promotion policies fo­ cus on prevention and promotion but do not extend to the broader dimen­ sion of enhancing people's capacity to cope with chronic conditions.

What is it that makes it possible for certain people to cope better than others? What are the supportive environments and the personal skills that enable some individuals and some families to deal with severe health prob­ lems more easily than others?

Enhancing this capacity to cope is the real challenge facing the chron­ ically ill persons themselves, their families and their social network, as well as the caregivers - both professional and lay - and the various institutions con­ cerned in the community, at the workplace, in the medical and social services. This includes the nongovernmental sector: over the years - I should say, over the centuries - private organizations have been some of the first to take action in relation to disability, representing either the chronically ill themselves, or family members and relatives, or those who had to care for them.

There is an urgent need therefore to critically assess the experience and knowledge available. The Ottawa Charter urges the examination of current concepts and practices and the development and implementation of new approaches.

In the case of chronic illness it means exploring ways to deal with every­ day stresses and anxieties in a way that does not always require medical intervention; it means taking seriously new ways of coping with pain, of using our limbs and senses; it means being concerned about the caregivers whose capacity to manage is no less important than the health of those for whom they care.

It also means moving away from these blocks and narrow sectors we have developed, that are called promotion or prevention here and rehabilita­ tion there, and which perhaps mix in a more complex manner in relation to public health than we thought so far.

COPING WITH THE STRESS OF ILLNESS

Richard S. Lazarus

How can we cope better, or help others to do so? The answer to this depends on knowing what an individual is coping with. This, in turn, depends on the appraisal, by the individual concerned, of the significance of what is happening for well-being - in effect, the source of harm, threat, challenge. Cases of myocardial infarction, cancer and chronic pain have some harms, threats, and challenges in common but there are also unique factors in each illness. The patient with a chronic illness is continually ap­ praising his or her symptoms, pains, disease progression with respect to their significance for well-being and survival, and coping accordingly.

The paper presents a microanalytic, contextual and process-centred approach to coping which is part of a broad system of thought, emphasiz­ ing cognitive appraisal and the person's ongoing relationships with the en­ vironment as factors of his or her emotional life.

Implications for prevention and treatment of illness in a perspective of health promotion are discussed as well as the need for research to pre­ dict long-term outcome from stress and coping.

Illness often imposes on us severe, acute, chronic, or recurrent conditions of psychological stress. At least three main types of stress-provoking chronic ill­ nesses can be distinguished: terminal (with or without a sense of hope), dis­ abling, and life threatening. Although it may share certain features with dis­ abling illnesses, a fourth illness-related condition, pain, involves a unique blend of psychological and somatic causation and consequences, and has its own strategies of treatment.

Coping is the prime concern of this paper, especially theory and meth­ odology in the study of the coping process. The central question in coping is a complex one, namely, which forms of coping, in which persons, and under which conditions result in positive and negative short- and long-term adapta­ tional outcomes? A satisfactory empirical answer would also create a corol­ lary question, namely, whether we can teach people to abandon dysfunc­ tional forms of coping in favour of functional ones. I am not sure that anyone has yet provided, or can provide, a good answer to this question.

There are a number of issues about illness that require theoretical atten- tion and their own research strategies. The major issues concern:

the possibilities and mechanisms of psychosocial causation and I or ex­ acerbation of any given illness;

the difficult problem of demonstrating that stress and coping have causa­ tive roles in illness;

12 Conceptual framework

the psychosocial overlaps and differences among the diverse types of ill- 11ess, for example, cancer and heart disease or subvarieties of cancer such as breast and lung cancer, or congestive heart disease and post-cor­ onary conditions.

A very important principle is that biomedical classifications may have little to do with psychological similarities and differences among illnesses that are based on whether there is a threat to life , disability. pain or interper­ sonal implications, and whether they have comparable requirements of daily management by the patient and caregiver. Therefore, while comparable in life threat, cancer and heart disease have markedly different psychological stress profiles; this applies to different types of cancer as well.

The traditional approach to coping

Ignoring the animal model of coping, which is limited mainly to avoidant and escape behaviour under noxious conditions. the traditional clinical and re­ search approach to coping has followed the psychoanalytic ego-psychology tradition. This has centred on broad. stable ways of thinking and dealing with one's personal agendas and the environment, and assumes hierarchies of ego-functioning ranging from the most healthy to the most pathological (Yaillant. 1977, 1971; Haan. 1977, 1969 ; Menninger, 1954). Haan, for exam­ ple, uses the term coping for the most healthy or mature ego-processes, de­ fence for neurotic ego processes, and ego-failure for fragmented or the most seriously disordered forms of adaptive activity ; (healthy) coping is character­ ized by good reality-testing and flexibility, whereas (pathological) defences are rigid and forced compulsively from within.

There are many problems with this traditional approach to coping. Some of the most important are the following:

I. The ego-psychology model. although a process theory of coping, has tended to generate static, unidimensional typologies for the measure­ ment of coping, for example, repression-sensitization ( or avoidance-ap­ proach), and the defence mechanism inventory (Gieser & Ih ilevich, 1969), which assumes stable styles of coping compatible with concepts like Shapiro's ( 1965) neurotic styles.

2. Unidimensional coping style concepts do not help us understand or pre­ dict what a person will think or do to cope in the specific stressful en­ counters of living. Clinically, we know that coping is complex and vari­ able rather than simple and stable. For example, a person with cancer might deal wit h each of the many threats created by the illness quite differently ; though not denied, the threat of death might be avoided in thought and action. However, when it comes to the threats involved in

Coping with the stress of illness 13

having to speak with friends or relatives about the illness, the coping process in that same person could be denial or distancing. And with pain or disfigurement, still another form of coping might be chosen. In short, many diverse coping thoughts and acts may occur in the illness context, each one dealing with different threat facets or at different mo­ ments or stages of the illness.

Broad styles of relating to the world do not usually help us to predict coping processes at a more microanalytic level. Yet, it is essential to know about coping at this level if we are to understand how the person is dealing at different times with the multiple harms and threats of a personal and social experience as complex as an illness like cancer. Thus, after mastectomy, a woman who can successfully avoid thinking about an uncertain prognosis when away from the hospital and working or taking care of the children will probably be unable to engage in avoidance the day before her appointment for a CAT scan. We must be able to describe what is going on as the coping process changes over time, as the illness improves or regresses, and as the pa­ tient deals with each type of threat.

The Lazarus-Folkman approach to coping

The above problems of the ego-psychology approach to coping, and the need for more detailed information, led in the late 1970s to a newer approach. For example, Folkman and I turned to a different approach for the conceptu­ alization and measurement of coping (Folkman & Lazarus, 1990, 1986, 1985, 1980; Folkman et al, 1987, 1986a, 1986b; Lazarus & Folkman, 1984a, 1984b ). A similar approach was also being evolved at the same time by Pearlin and others (Stone & Neal e I 984; Moos & Billings, I 982; Pearl in et al, 1981; Pearlin & Schooler, 1978 ).

The newer, more microanalytic, contextual and process-oriented ap­ proach has four key features :

I. There is an emphasis on the description of thoughts and actions that arc taking place or have taken place in specific stressful encounters or at various stages of a stressful encounter.

2. The measurement is contextual, process-centred, and transactional. That is, we do not ask what the person might have done or thought, or usually does, but what actually happened in a particular context. In addition, the assumption is made and evaluated that what happens or happened changes with time (as a process) or with the changing context. Finally, what is done and thought is considered to be the result of the active inter­ play of person and environment (transaction) and depends on the chang­ ing psychological relationship between person and environment.

14 Conceptual framework

3. The design of the research observations of coping requires that the same person (or persons) be assessed from moment to moment or from one context to another in order to evaluate stability and change in cop­ ing thoughts and acts.

4. One must be wary about evaluating whether any given coping process is inherently good or bad since this depends on the particular person, the personal agendas the person carries into situations, the type or stage of the stressful encounter, and the particular outcome of concern, i.e. sub­ jective well-being, social functioning or somatic health. I shall have more to say later about whether some forms of coping are generally more favourable in outcome than others, as is usually assumed in the ego-psychology model (Yaillant, 1977).

Lazarus & Folkman ( 1984b) define coping as constantly changing cogni­ tive and behavioural efforts to manage specific external and/or internal de­ mands that arc appraised as taxing or exceeding the resources of the person. This definition is process-centred rather than trait-centred, implies a distinc­ tion between coping and automatized adaptive behaviour by limiting the concept of coping to conditions of stress, uses the term "efforts" in order to avoid confounding the coping process with its success or failure in producing good or poor outcomes. and uses the term " manage " which can include min­ imizing, avoiding, tolerating and accepting negative conditions of life, thus avoiding the equation coping = mastery.

The Ways of Coping checklist

The earliest version of our coping measurement procedure (Folkman & Lazarus, 1980) was based on a theoretical analysis of coping by Lazarus & Launier ( 1978) and several earlier treatments of the subject (Lazarus, 1966; Lazarus et al , I 974 ). In the checklist we asked subjects to identify a recently experienced stressful encounter and to indicate whether they had used each of 67 coping thoughts or acts in that encounter.

Later we revised the checklist, which resulted in the present version of 66 items, and added a Likert scale addressing how much a coping thought or act had been used, which made it possible to perform a rigorous factor anal­ ysis that resulted in eigh t coping factor subscales (Folkman et al , 1986 a) . The psychometric properties of this revised Ways of Coping Scale have been reviewed by Tennen & Herzberger (1985). And the scale, or the basic approach, is widely employed to study coping with stress in general. and coping with the stresses of illness in particular. The eight scales of the Ways of Coping comprise variations of the two basic functions of coping we have long emphasized, namely, problem-focused and emotion-focused coping.

Coping with the stress of illness 15

Prob/em-focused coping consists of efforts to change the actual circum­ stances of an adaptational encounter, e.g. by changing the environment or oneself. This includes:

confrontive coping (e.g. stood my ground and fought for what I wanted;

self-control ( e.g. I tried to keep my feelings to myself);

seeking social support (e.g. talked to someone who could do something concrete about the problem);

accepting responsibility ( e.g. criticized or lectured myself);

planful problem-solving (e .g. I knew what had to he done, so I doubled my efforts to make things work).

Emotion-focused coping involves purely cognitive activities that do not directly alter the actual relationship with the environment hut do alter how this relationship is cognized. This includes:

distancing ( e.g. went on as if nothing had happened);

escape-avoidance (e .g. wished the situation would go away or somehow he over with);

positive reappraisal ( e.g. found new faith).

Thus, one can try to control what is attended to, say by avoidance of cer­ tain facts or their implications, or one can attempt to reappraise these facts or their implications, for example, by denial or distancing. Emotion-focused or cognitive coping regulates emotional distress by affecting what is being at­ tended to or by changing its meaning. When this process succeeds, there is little or no reason to experience emotional distress since the harmful or threatening relationship has been made subjectively benign . This approach to coping measurement has been discussed in considerable detail in our pub­ lished research with the scale, in our monograph (Lazarus & Folkman, 1984a) and in a recent analytical review of our metatheory, theory and methodology (Lazarus & Folkman, 1987). In this paper, I will offer only some broad-brush generalizations from our research on coping over the past ten years.

Empirically based generalizations

Since a process formulation about coping requires both intra-individual and inter-individual research designs and data analyses, we have regularly - usu­ ally simultaneously - employed both in our research. In intra-individual analysis, the coping of the persons or the samples in one encounter is com­ pared with the coping in another encounter, which is a way to learn about the influence of the stressful context. In inter-individual analysis, every person's coping is averaged or aggregated in some way across all stressful encounters, and then compared across persons or subgroups.

16 Conceptual framework

Inter-individual (normative) generalizations

Most people use nearly all eight forms of coping in every stressful encounter, although the emphasis on one or another form of coping changes with the type of encounter, the way it is appraised, and the particular person.

The pattern of coping changes from one stage of an encounter to an­ other. We have found this to be the case, for example, with students coping with an examination (Folkman & Lazarus, 1985). In the anticipatory stage just before the exam, students tended to seek information from others and otherwise engage in problem-focused coping; however, after the exam but before grades were announced, the predominant form of coping shifted to distancing, which was sensible since there was nothing to do but wait. Other forms of emotion-focused coping were emphasized after the outcome of the exam had been announced. The changing mental state at different points in time has also been amply documented by disaster researchers who recognize warning, confrontation, and post-confrontation as stages. If a researcher tries to summarize what has happened over the three stages, as is usually done when an exam is treated as a single stressful event, there will be considerable distortion about the actual and changing psychological processes in each in­ dividual and for the total group.

Some forms of coping are more stable than others, that is, people who use them heavily in one stressful encounter tend to use them heavily also in other encounters; conversely, other forms of coping are heavily contextual, meaning that they show very little stability across stressful encounters over time. In our research (Folkman et al , 1986b ), problem-focused coping strat­ egies tended to be highly variable across stressful encounters; autocorrela­ tions over five encounters averaged from 0.17 (seeking social support) to 0.23 (planful problem-solving). However, some emotion-focused coping strategies tended to be moderately stable ; the average autocorrelation for positive re­ appraisal was 0.47 and for self-controlling coping 0.44. This suggests that most problem-focused forms of coping are very responsive to contextual fac­ tors whereas certain emotion-focused forms are influenced mainly by person factors. The stability and variability of coping over time and across diverse stressful encounters becomes a very important issue when we wish to use cop­ ing to explain and predict long-term mental and physical health outcomes.

Intra-individual (ipsative) generalizations

The type of stakes that a person has in the outcome of a stressful encounter affects the strategy of coping employed. For example, when their self-esteem is at stake, people are wary of seeking social support from others compared with occasions in which other goals are at stake. Shame seems to make us want to hide from others, which is why people would rather be alone to face a bad situation involving shame rather than seek comfort from others; how-

Coping with the stress of illness 17

ever, social support or comfort will be sought when there is anxiety - without shame - about one's own or another person's well-being. This is an example of the role of what we have been calling primary appraisal in the choice of coping strategy (Folkman et al, 1986a).

Whether or not a person thinks something can be done to change harm­ ful or threatening conditions for the better also affects the strategy of coping employed. When little or nothing can be done, the emphasis is apt to be placed on emotion-focused coping processes such as avoidance or distancing. On the other hand, when the person judges that the situation is changeable or controllable, problem-focused strategies will predominate. This is an ex­ ample of the role of what we have been calling secondary appraisal in the choice of coping strategy (Folkman et al, 1986a).

Coping is clearly a mediator of emotional reactions generated in a stressful encounter. I am using the term mediator to refer to a process - gen­ erated in the encounter that actively changes the mental state tha t would have occurred in its absence - rather than as a variable that is present at the outset. The latter type of variable is usually referred to as a moderator. The theoretical and methodological distinction between mediators and modera­ tors has only recently been explained and emphasized (Baron & Kenny, 1986; Zedeck, 1971) and is now also being applied to stress and coping (Frese, 1986; Stone, 1985).

Our findings show clearly that coping affects emotions during stressful encounters. Drawing on data from two studies and using a series of hier­ archical regression analyses, we found that some forms of coping increased positive emotions such as feeling confident and being happy, and decreased negative emotions such as being worried and angry, from the beginning of the encounter to the end. On the other hand, other forms of coping made things worse. Specifically, planful problem-solving appeared to have a salu­ brious effect on the emotional state, whereas confrontive coping and distan­ cing appeared to make things worse in our subjects and under the particular stressful conditions they described.

functional and dysfunctional coping

Are we in a position to claim that some forms of coping, say, wishful thinking (a part of the escape-avoidance factor), are dysfunctional, and that other forms of coping, say, planful problem-solving and positive reappraisal, are functional? It is probably a good guess that much of the time wishful think­ ing is counterproductive because (a) it expresses desires and expectations that are not in keeping with the realities of a stressful encounter, and (b) it is incompatible with realistic problem-focused actions. Rather than wishful thinking, which defeats planful and constructive action, it is probably useful to have positive thoughts about what might be done to actualize one's pre-

18 Conceptual framework

ferred goals. Our data show in fact that positive reappraisal is commonly as­ sociated with planful problem-solving, suggesting that the former is compat­ ible with and perhaps facilitative of the latter ; wishful thinking does not show this pattern.

Recent studies and thoughtful analyses (Schei er & Carver, 1988 ; Scheier et al, I 986) give testimony to the principle that the tendency to be optimistic in the face of negative events can be an asset with respect to long-term adap­ tational outcomes such as subjective well-being and somatic health . These authors suggest that optimists use different coping strategies than pessimists, including a greater emphasis on sustained problem-focused coping: they are likely to be realistic, and to use emotion-focused coping strategies such as acceptance/resignation only when the situation is appraised as uncontrolla­ ble. As Singer & Killigian ( 1987, p. 542) have put it," At least in our society it seems likely that we sustain positive emotional states and a consequent tendency towards relatively effective day-to-day action through a pattern of illusory hopefulness." I would wish to add here that optimism or positive thinking and positive reappraisal alone, in the absence of planned and sus­ tained effort to deal with real problems, can also be a dangerous outlook, since the real problems remain to haunt us later.

Despite the possibility that some forms of coping might be generally functional or dysfunctional, we have consistently argued that any given coping process may have favourable or unfavourable results depending on who uses it, when it is used, under which circumstances, and with respect to which adaptational outcome. We are wary of making strong generalizations about good and bad coping because of our premise that the functional value of the coping process can seldom if ever be divorced from the context in which it oc­ curs. A sound conceptualization about this might be that what is good or bad about the coping process depends on its "fit" with the situational and intra­ psychic requirements of an adaptational encounter. We believe that research­ ers need to examine the coping process and its outcomes under diverse stressful conditions before any generalizations are made about this.

Although observations are relatively scarce, others have obtained find­ ings that support our contextual emphasis. For example, Collins et al (1983) found that the residents of Three Mile Island who persisted in problem­ focused efforts after a nuclear accident showed more psychological symptoms than residents who used emotion-focused efforts . Given the circumstances, problem-focused strategies were unrealistic since there was little to be done to change the actual situation, and persisting in trying to do so was unpro­ ductive. On the other hand, engaging in emotion-focused or cognitive coping processes, such as distancing, denial. avoidance or positive reappraisal, fit the requirements of the situation better.

It is probably unnecessary to note that this principle has major ramifica­ tions for coping with illnesses that are refractory to change. It is also in keep­ ing with the motto of Alcoholics Anonymous, which states: "God grant me the serenity to accept the things I cannot change, courage to change the

Coping with the stress of illness 19

things I can, and the wisdom to know the difference." Here we have a state­ ment of the distinction between problem- and emotion-focused coping, of the principle of secondary appraisal, and of reality-testing, all integrated within a common bit of folk wisdom.

Dilemmas in predicting long-term adaptational outcomes from stress and coping

In moving away from the older tradition of broad, general styles of thinking about and relating to the world and engaging in a microanalytic, contextual and process formulation of coping as specific thoughts and acts employed to manage particular stresses of living, have we sacrificed the potential of the coping concept to help us understand and predict long-term adaptational outcomes? There is indeed some risk of this in our approach. Others as well as ourselves have had only modest success in establishing an empirical rela­ tionship between coping or appraisal and long-term outcomes. One reason for this may be the highly contextual and therefore variable nature of ap­ praisal and coping processes. To explain and predict long-term outcomes requires that we measure mediating processes that are stable enough to yield a representative index of what a person does in confronting countless stress­ ful encounters over a substantial period of life or in an ongoing long-term crisis such as major illness. Our autocorrelations of coping processes over five stressful encounters, occurring over five months, do not reveal much stability even for the more stable coping strategies: after all, a correlation of approximately 0.5 accounts for only about 25 % of the variance. So it is pos­ sible that a microanalytic approach to coping will be inadequate when it comes to predicting long-term health outcomes.

When we came upon the scene, the macroanalytic ego-psychology strat­ egy of seeking broad styles of coping was already failing, and had left us un­ able to describe what a person actually did to manage specific stresses such as those occurring in major illness. The microanalytic approach, however, has not been applied long enough, or with the appropriate longitudinal designs, to tell us how far it can take us in explaining and predicting long-term adap­ tational outcomes.

What is the influence on health status?

What are the major, unresolved dilemmas that thwart attempts to demon­ strate what we all believe, namely, that stress and the ways it is coped with affect subjective well-being, social functioning, and health status? I want to discuss four of these dilemmas briefly, especially as they apply to health status, because I believe they are not widely or well understood.

20 Conceptual framework

I. Health status is affected by a very large number of factors, including ge­ netic-constitutional ones over which we have little or no control, acci­ dental factors, and a host of lifestyle factors. After the variance contrib­ uted to health status by these factors has been accounted for, the re­ mainder on which to assess the influence of stress and coping - or try to influence it by intervention - is probably quite modest. This makes it difficult to demonstrate to everyone's satisfaction that stress and coping affect health, even if we employ the appropriate longitudinal and multi­ variate or systems research designs.

2. The conceptual and methodological guidelines for evaluating health are inadequate. This can be illustrated by the problem of how to weigh vari­ ous physical conditions, diseases, and symptoms in creating a measure of health status. Should we, for example, centre attention on longevity or on functioning as a criterion? Mucous colitis probably has little relation­ ship with longevity, but it can have a major impact on daily functioning; a person who can barely leave the vicinity of a toilet is apt to be consid­ erably handicapped in social relations and work. On the other hand, hy­ pertension is a major risk factor for heart attack and stroke, but if the person is unconcerned about it and if it is untreated, it will have little or no impact on social or work functioning. It makes a big difference in the assessment of a person's health whether we emphasize longevity or the quality of social functioning.

Another difficulty is that somatic health is confounded with factors that are largely psychological in nature, for example, energy level and the sense of physical well-being. Should these factors be separated, and if so, how?

3. Health status, as it is usually measured, is a very stable variable. In our research, its test-retest correlation over one year was 0.69 in one sam­ ple, and in another sample it was 0.59. To show effects on health re­ quires change. Change is apt to be greatest in early life, in old age, dur­ ing the course of major illness, and perhaps under prolonged stress.

4. Finally, as I noted earlier, to show the role of stress and coping in long­ term health, say, over a period of one or more years, requires that we identify stable stress and coping processes during the time interval in question because it is not what happens in a single stressful encounter that affects long-term outcomes but what we do time and time again over a long period. There are two possible alternatives to the solution : first - though doing this successfully now seems improbable - research­ ers must identify a stable stress and coping pattern from one or a few observations during the first period, which can serve as a predictor; or second, researchers must be in a position to monitor stress and coping processes in any given person or group over the time interval in question.

Coping with the stress of illness 21

If, as I have said, many coping strategies are unstable, or if as I think is true, no single stressful episode can stand for stress that is typical of the person without this being checked out by repeated measurement over time, then it becomes necessary to monitor what is happening in the person's life in the interim between the first and second periods to determine the stable stress and coping processes that might have an influence on long-term health.

In research to date, longitudinal designs in which what is going on in stress and coping in target persons or groups is monitored carefully over time have been extremely rare, and when they have been done the time periods involved have been very short (DeLongis et al, 1988; Caspi et al, 1987; Eckenrode, 1984; Stone & Neale, 1984).

There is an irony in the fact that although the study of stress, coping and long-term health outcomes requires careful monitoring of stress and coping processes and of these outcomes over time, the economics of research forces us to examine this important problem with less costly and inadequate cross­ sectional research designs. I fear this is very shortsighted and, as we have seen above, constantly limits what we can say about whether and how stress and coping processes affect these health outcomes. One can only hope that newer biomedical concerns about how the immune process is affected by stress and coping will encourage a stronger commitment to the study of the covariation of these mediating processes over significant time periods, to­ gether with the neurological and biochemical features of the immune re­ sponse and other physiological changes. To do this would be costly, but emi­ nently worthwhile.

Practical and clinical implications of stress and coping theory

Although I have dealt above only with coping, the theory, metatheory and methodology of my approach is part of a much broader system of thought that also emphasizes cognitive appraisal and the person's ongoing relation­ ships with the environment as factors in his or her emotional life (Lazarus & Folkman, 1984a). This system of thought has a number of implications for those concerned with intervening in the prevention and treatment of illness and in health promotion and I will now take up three issues of widespread interest which I believe have not received enough thoughtful attention:

sociocultural prejudices about how a psychologically healthy person should think and feel;

the multiple meanings of social support; and

the importance of understanding what is going wrong in an individual or group in trouble and, conversely, what is going right.

22 Conceptual framework

Prejudices about mental health

For a long time, mental health professionals have assumed that certain types of coping processes, most notably denial, are pathological or pathogenic. Our professional culture has said that a mentally sound person does not engage in denial, and should be encouraged to abandon it as a coping strategy that is not in the best interests of mental health .

O ne thing wrong with this view is that most if not all people, including quite sound ones, use denial-like modes of coping from time to time (Lazarus, 1983). There are occasions, for example, when nothing can be done to alter a damaging situation and when denial- like modes of coping may not only be necessary but will also have positive consequences. The pos­ itive value of denial-like coping processes may be illustrated with a personal disaster such as spinal cord injury; immediately following the injury, the per­ son usually does not yet have the psychological or physical resources to ex­ amine what has happened realistically and to mobilize systematic efforts to deal with it in a planful way. The continuance of this mode of coping beyond the initi al stage of the crisis is apt to be counter-productive; the stricken per­ son must ultimately come to terms with the handicap, at which time there is apt to be some depression and anger, and address it in a problem-focused way. Nevertheless, denial may be the most constructive mode of coping in the early stages. Moreover, a growing body of research, though showing somewhat conflicting results, has suggested that denial-like forms of coping may have value in post-coronary care and recovery (Levine et al, 1987; Shaw et al, 1986; Hackett & Cassem, I 975; Hackett et al, 1968).

1 have used the clumsy expression "denial-like" coping to point out that there arc a number of seemingly related but different types of denial that may not al l be equally valuable or dangerous. Thus, denial of the fact of handicap or illness, say a cancer with poor prognosis, is certain to require be­ ing abandoned in time as the symptoms worsen and the denial of the fact of ill ness becomes more d ifficult or even impossible to sustai n. On the other hand, denial of the most negative implications of handicap or illness, such as the imminence of death or the end of worthwhile living, is less vulnerable to disconfirmation. The expression denial-like coping helps us understand that many processes of denial look alike but are quite different in content and consequences. For example, avoidance may mimic denial in that the person refuses to talk or think about negative aspects yet fully understands them; thus, a terminal cancer or A IDS patient may be unwilling to speak of the future with others, yet this is not denial because the bleak situation is not necessarily disavowed.

Wh at is happening with respect to coping is often nature's way, so to speak, of helping the person through a crisis, and we need to be wary about making hasty and unwarranted judgements about the functional or dy4unc­ tional character of the coping process. Rather, we should take into account the circumstances being faced, the timing or stage, the alternatives, and the

Coping with the stress of illness 23

person's agendas and resources, all of which are important considerations about the adequacy of coping and its consequences for well-being.

Related to the above is the paradox that although we tend to be preju­ diced against denial, we also encourage it by trivializing distress in people who are facing illness crises (Lazarus, 1985; Wortman & Lehman, 1985). Health care professionals do this by downplaying the negative and accentu­ ating the positive, which undermines the sense of the legitimacy of ill persons' distress. It is as if one were saying to the victims of tragedy that they have no right to feel bad about having lost what they regard as the most pre­ cious of life's possessions. Distress is treated as unworthy and even patholog­ ical, a failure of good coping. As a consequence many patients must inhibit expression of their real feelings or deny them, and all this leads them to doubt that they are either understood or accepted as they are (Coates & Wortman, 1980 ; Weakland et al, 1974).

The motivations for trivializing distress are sometimes altruistic, as when we believe that positive thinking can overcome misfortune, and self­ serving, as when we are threatened by the failure of justice and blame the victim (Lerner, 1980) or discomforted by the emotional demands ill persons make on us ( Hackett & Weisman, 1964 ). The mechanization of medical treatment today also increasingly distances the patient from health care personnel.

The multiple meanings of social support

Specialists in health care need to be clear about these meanings because the distinctions among them are relevant to social support interventions. which are of great importance both in professional practice and for lay self-help groups. There are four main meanings of social support: support as (a) sub­ jectively available; (h) proffered when needed; (c) received; and ( d) sought or used in stressful encounters.

The most common approach to social support is as subjectively available in the social e11viro11me11t; the person believes he or she can count on others for information, tangible aid, and/or emotional support (Schaefer et al, 198 I). This approach says something about how the person perceives the so­ cial environment but not about how things actually are (Antonucci & Israel. 1986 ; Heller et al, 1986 ). Therefore, this social support variable may be pre­ dictive of the person's usual sense of well-being, but is not necessarily of rel­ evance to interventions under conditions of stress.

Social support as proffered in stressful e11cou11ters refers to what signific­ ant figures or clinical workers actually offer the person. However. lack of skill and sensitivity to the person's psychological needs, on the one hand, and that person's willingness to accept or use the support. on the other hand, often makes what is proffered irrelevant (Lehman et al, 1986; Dunkel-

24 Conceptual framework

Schetter, I 984). Mechanic's classic observations (I 962) on the often faulty efforts by spouses to offer reassurance to their student marital partners who are facing a crucial examination points up how important it is to have the right kind of social support, and the need to train those who might help in how to provide it. For example, a spouse who tries to reassure the anxious student by saying that she is not at all concerned because she knows he (the student) will do fine, adds to the threat because the sense of threat is thereby challenged, adding to the existing pressure. On the other hand, the spouse who states that she understands and shares the apprehension - after all, the stakes are high - but who also adds that they will manage whatever the outcome, accepts the sense of threat - validating the student's judge­ ment - and offers the reassurance that as a couple they will come through whatever happens, thereby lowers the threat and confirms the soundness of the relationship.

The above discussion points to a distinction between what is offered and what is actually received by the person in times of stress. These are not neces­ sarily the same. If we measure what is offered we may not be taking into ac­ count what is received; what is received is a more proximal variable than what is offered by the environment. The person may not take what is offered as genuine, or may not be able to accept it because of a contrary value that to accept help is to prove oneself inadequate.

Social support as sought and used in stressful encounters comes closest to the concept of the coping proce1·1·. A person may or may not use what is per­ ceived to be available or may solicit it as a strategy of coping. The close con­ nexion between social support and coping is beginning to be recognized (Heller et al, 1986; Thoits, 1984 ). It would make sense to think of seeking so­ cial support as a basic strategy of coping.

The latter three meanings of social support, as proffered by a caregiver, as received in times of stress, and as sought as a form of coping, are particu­ larly relevant in clinical health care. Still another meaning of social support, the actual social network of the person and its characteristics, has not been included here because it seems to be of less significance for intervention than the others.

Understanding what has gone wrong or right with the person

The final implication of the approach to stress and coping I have presented, concerns what we need to know about the person in order for this approach to be of solid help, either in treatment, prevention or health promotion. From the standpoint of stress and coping theory, one must have an assess­ ment of a person's degree and type of stress. The theoretical and empirical basis of such an assessment would require an extended paper of its own.

Coping with the stress of illness 25

I should mention, however, that there has been much controversy about the merits of life events lists as a basis of measuring degree and type of stress, in which I have played a role (Lazarus, 1984; Lazarus et al, 1985). My theor­ etical and empirical work on the measurement of stress reactions has centred on what my colleagues and I have called daily hassles. This type of measure­ ment is not directed at environmental demands or stressors but at daily annoyances and crises as appraised by the person - which can be chronic or role-related and are measured subjectively - and is both a dependent and an independent variable in the overall emotion process and its consequences for adaptational outcomes. It is also important to have some indication of the content of stress in a person's life, that is, the areas of living or settings in which stress will occur, as well as the magnitude of stress. Such a pattern can tell us much about what is going on in the person 's life , or in the lives of those in a particular social group (Lazarus, 1984).

Of even greater value in understanding what is going wrong or right in the person 's life are the emotions experienced by that person in a given time period. Stress is primarily a unidimensional variable. The kind, dura­ tion, intensity and pattern of occurrence and recurrence of emotions, both positive and negative, provides much more insight into a person's deficits and strengths than simply the degree and content of stress. Recurrent anger, for example, tells us something different about the person's relationship with the environment and how it is appraised than, say, recurrent anxiety. From the recurrent anger we learn that the environment is frequently viewed as assaultive, whereas from the recurrent anxiety we learn that the environment frequently seems threatening. Similarly. a pattern of shame means that the person frequently believes he or she has failed to live up to an ego ideal; a pattern of guilt, on the other hand, reflects the frequent be­ lief that the person has transgressed against internalized social standards of conduct.

Each emotion expresses its own special relationship with the world, and so when it occurs or recurs, it can be diagnostic of a particular kind of trou­ bled relationship with that world. The same applies to positive emotions such as happiness, pride, compassion, love or eagerness. By evaluating the person's or the group's emotional life. we obtain the most useful information on which to predicate prevention, treatment or health promotion.

Clinical intervention is best centred on an understanding of what is go­ ing wrong emotionally, due to the person 's faulty appraisals of circumstances of life, and/or deficits in the coping process. Not only can distress and dys­ function arise from a poor fit between a person 's appraisals and the realities on the person-environment relationship but, as we indicated before, a person may cope inappropriately, for example: persisting in problem-focused coping when there is nothing to be done; choosing an inappropriate form of prob­ lem-focused coping; failing to regulate emotional distress by suitable forms of emotion-focused coping; or lacking in skill to properly employ an ap­ propriate coping strategy. An understanding of what is going wrong in the

26 Conceptual framework

appraisal and coping process puts therapists in a better position to address the problem with their interventions.

When there is continuing emotional distress and dysfunction we can be sure that there is what might be called disconnexion among the constructs of the mind, or between mind and environment, and mind and action (Lazarus, 1989). Disconnexion refers to a condition in which the components of the mind are responsive to divergent influences and generate contradictory ac­ tions. What the person thinks is out of touch with the emotions experienced or the motives that shape action. For the opposite of disconnexion to occur, short-term goals must be in harmony with long-term goals and contribute to them as means to ends. Conflict among goals is disruptive of harmony and results in the components of the psychological str