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Chronic illness in children. Its impact on child and family
Book reviews Regretfully xt times the reader is tempted to despair at the lack of progress nursing and health care systems have made in a hundred years. The confusion of titles for different types and kinds of nurses, the resistance of physicians to the professionalization of nurses. the struggle for control of nursing by non-nurses, arguments over preparation for practice, the lack of a well-defined national health policy and government support, the inequality and unaccessability of health services for the poor and the elderly which White describes with interest and empathy, are all recurring themes in nursing and health care systems of today. If one were not convinced that the evolution of social change is slow, one would indeed believe the story of the Poor Law nurses is a d@ji cu experience. Throughout the hundred year cycle. the impacts of individuals such as Florence Nightingale and Mrs BedfordFenwick are discussed. but the most remarkable potential for major change emerged from public outcries often led. by gentle laywomen like Laura Twining, who caused a host of investigations and reports from departments, councils, commissions, and committees. Over time the efforts of these public spirited citizens raised the social consciousness of the government to respond to health care needs. This response required the support of the education and practice of nursing. One ol’ the lessons nurses have yet to learn about political power is the potential impact of important personages and the support of the public in moving large systems of government and health care delivery. White’s analysis reveals that as a group the Poor Law nurses, lacking political acumen in the public arena. used personal strategies for change within their own settings. They refused to submit to supervision by lay managers. They fought for better environmental conditions and improved medical services for their pauper patients. Some notable individual leaders among the Poor Law nurses testified publicly to the miserable conditions of the workhouses and infirmaries, but it was the group spirit of the nurses which altered the daily lives and ambience of the workhouses and infirmaries. But the deterrents to the advancement of nursing were generally social and economic factors related to changes in social phenomena such as depression, war, and famine. With all these deterrents, official reports (the primary source of much of White’s work) reveal nursing’s long history of responsiveness to emerging social needs despite serious deficits in trained personnel, the schisms between the Poor Law nurses and the Voluntary Hospital Group, the strong and uncertain stirrings of professionalism, and the deprived social status of women and nurses. Through astute analyses and sensitive and scholarly treatment of complex social phenomena, White has written an interpretive history which is particularly useful to scholars of contemporary nursing, to health service researchers and to health policy makers. Perhaps White’s m.ost insightful comment is that despite the fact that the Poor Law nurses were frozen in their roles, and therefore stable and permanent, “the profession did not lose its caring role entirely” because the poor law nurses preserved it. They provided roots in bedside nursing that are valued highly to this day. Subtly, and sometimes not so subtly, the author’s beliefs about nursing are revealed through the analyses of relationships between nursing and medicine, evaluative comments about the preparation and practice of nurses, and her obvious concerns for the caring role of nurses. The expressed desire of the author to provide present day nurses with background and a tool “to test professional values in rejecting the old and accepting the new” has been fulfilled in this publication. That and so much more. School OJ Nursing Unirersirj, of Rochester Rochesrer. N.Y.. U.S.A.
LORETTA C. FORD
197
Chronic Illness in Children. Its Impact on Child and Family,
by GEORGIA TRAVE. Stanford University California, 1976. 556 pp. 919.50
Press,
Stanford,
This author set herself the ambitious task of writing a textbook dealing with psychosocial implications of various chronic illnesses in children and in addition, discussing the practical aspects of providing care for these children in hospital, home and community, and providing a framework of medical information comprehensible and useful to social workers. She has succeeded. to a surprising degree, in accomplishing this task. Moreover, she reviews basic concepts of child development, various psychiatric theories, concepts of death and dying, family dynamics in modern society, theories of stress and crisis, community resources and functioning of the health team. This comprehensiveness is the book’s strength as well as its weakness as is the case in many other textbooks. Many important subjects have to be gone over once lightly. Yet the bibliography is complete and well-selected, so that for those students who wish in-depth knowledge the book should also be helpful. Following the introductory material on the subjects mentioned above. there are individual chapters dealing with a series of chronic ailments that are common and important in childhood, including a chapter on the unborn child and his mother which contains a great deal of helpful information on high risk mothers, pregnancies, etc. There is appropriate emphasis on patients readiness for intervention during periods of growth and change, such as pregnancy and the immediate post-natal period. The chapter on asthma is extensive and presents varying viewpoints on the causation of asthma, very objectively. There is a good chapter on chronic kidney disease, and a short chapter on head injury-which I was surprised to see included-but the material certainly would be helpful to workers dealing with families involved in a critical situation around a child’s major injury. The chapter on hemophilia is very complete to the extent that it even has a section on adopting a hemophiliac child, which seems almost too uncommon a problem to deserve a separate section in a basic text. There are good discussions of arthritis, diabetes, leukemia, muscular dystrophy, sickle cell disease, etc. In some of the chapters, there is information for social workers to transmit to families who are seeking for the appropriate physician to deal with their child with chronic illness and to meet their own needs. In some cases 1 think this information would be extemely useful to families, in others I think it might put them in conflict because they have an established relationship with their physician who does not meet all the criteria delineated in the book, or they may not have available to them the ideal physician that the social worker would have them see. Thus, certainly the readers of the text will have to be discriminating in their interpretation of the material offered in this respect. Along a similar axis, in some instances when the author presents specific medical information about the various disease conditions, I can foresee some problems in the social workers application of this material with the family. Even in instances where I agree with the medical information presented (and in most cases this is surprisingly sound and complete) I can see that patients being followed by certain physicians would be in a bind if the social worker used the specific information she has gleaned from this text. For instance, on page 349 there is a statement that “urine tests should not be negative all day in the care of the diabetic child”. Although I happen to agree with this statement, there are many competent physicians who do not, and certainly in many other instances the specifics are not that unanimously agreed upon by members of the medical profession or their associates.
198
Book reviews
My two main criticisms of the text are the following: One is that there is not enough emphasis on growth and development from the point of view of what this does to the handicap, the cosmetic disfigurements and the child’s physical abnormalities. An important point for all those parents, professionals, etc. caring for children with physical handicaps, is the fact that whereas a small child who is handicapped can be appealing and readily accepted, this gets to be more and more problematic as the child grows into an adolescent or a young adult. This second point I think which should have been made more often, relates to the specific problems relating to sexual development and functioning in children with these various handicaps as they reach adolescence or as they contemplate their adult life. All too often, physicians fail to include sexual counseling and sex information in their communications with patients, and it would be hoped that social workers would be sensitive and interested in this aspect of patient care and health education. However, this text seems to have the same blind spots in this respect as does so much of medical practice in the community. There are two references to patients mentioning that they do not want to “marry a trip”, but these in an otherwise comprehensive text just stand out to point up the other omissions in this respect. Finally, one question that occurred to me in reading the book through is that there are so many nonspecific effects of chronic illness in childhood from a psychosocial point of view, both in respect to the child and the family, that it might have been more readable if the nonspecific effects of stress and illness had been discussed in a separate section, and the chapters had only dealt with the attributes of the particular illness that are significant for child and family. For instance, there is a rather repetitious discussion on marital conflicts caused by various illnesses in respect
to a number of chapters which could have been covered for an illnesses together. However, my criticisms of this book are few and my admiration for the amount of sound information that is provided under a single cover is tremendous. To my knowledge, there is no such information available anywhere at this time and the text should be extremely helpful to social workers and others dealing with children and familes around the subject of chronic illness.
development, the organizational structure. interpersonal relationships within the organization and boundary pressures from outside of the organization. Handy discusses “The Family: Help or Hindrance”. Much of this is oversimplified (e.g. the classification of individuals into four sub-types) but still of heuristic value. The McMichael chapter on “Personality. Behavioral. and Situational Modifiers of Work Stressers” is a valuable reclew. Its main focus is that the simple minded invocation of the concept “stress” impedes the field because it is used too indiscriminately and inconsistantly. Historically, studies in this field have viewed the source of work stress in either the individual worker’s personality or the organization’s structure. The “person-environment fit” approach as described by Harrison is refreshing in that it adopts a “no fault” attitude which is helpful. Johansen details one extended study of modifying a work stress setting, a Norwegian ship. Since by definition ships are relatively isolated from extraorganizational boundary friction, they form a good laboratory for studying a system and trying to introduce change. Future work in this field would profitably capitalize on longitudinal case studies as alluded to in this volume and as discussed in much of Levinson’s work (cf. H. Levinson. Grganizarionul Diagnosis. Harvard University Press. Cambridge, 1972). Department of Psychiatr) Massachusetts General Hospital Harvard Medical School Boston, MA. U.S.A.
JOEL E. DIMSDALE
Longimdhal Research on Drug Use: Empirical Findings and Methodological Issues, edited by DENISE B. KANDEL. Hemisphere Publishing. Washington, D.C., 1978. 314 pp. $22.50
Most of the papers in this book are revisions of articles commissioned by the 1976 Conference on Strategies of Longitudinal Research on Drug Use. The purposes of that conference (and of this book) were twofold: “to move towards a theoretical synthesis of findings on the antecedents and consequences of drug use in various populations and to provide an opportunity for detailed methodological University of Southern California BARBARAM. KORSCH critiques of longitudinal research and for the development School of Medicine and Childrens and codification of methods”. The second goal seems more Hospital oj Los Angeles, Cal& U.S.A. fully realized than the first: of the eight studies reported extensively, seven deal with adolescent or post-adolescent populations and one deals with adult alcohol use. Stress at Work, edited by C. L. COOPER and R. PAYNE. (Although 8 studies are reported extensively, it should be John Wiley, Chichester, 1978. 293 pp. 623.00 noted that 23 studies were used to compile the empirical results. Unfortunately, only one of these studies dealt with The topic of stress at work is something all of us are faman adult population and that study is limited to alcohol iliar with, from our personal experience, from reports of use in white males.) While acknowledging that minorities patients and friends, and increasingly from research in the are not dealt with specifically (only in direct proportion social sciences. This edited book brings together a diverse to their representation in the general population). Kandel group of investigators studying the area. The editors hope reflects a general laissez fuirc attitude on the part of that it will appeal to a broad audience in applied psyresearchers to the existence of a substantial adult populachology and sociology, personnel management, and occution who use. misuse and abuse prescription medications. pational medicine. The table of contents promises much With this sampling caveat in mind. Kandel’s “theoretical that would appeal to people in the above fields. synthesis of findings” are grouped into three major areas: It is, however, a very uneven book, even for an edited (1) patterns of involvement in drug use (such as “the period volume. Some chapters are poorly written; some are tanfor risk of initiation into illicit drug use is over by the gential to the topic. For the scholar, the book is also mid-20’s” and “addiction to heroin is not necessarily a flawed by its very scanty index. permanent state”). (2) antecedents of drug use (such as malSome of the chapters are commendable. Kasl’s chapter adjustive personality factors and “poorer school performon “Epidemiological Contributions to ,the Study of Work ance” precede the use “of illicit drugs”). and (3) conseStress” is a careful sifting-through of the data, and the quences of drug use (such as drug use “has not been limitations of same, on this topic. In a rather dry chapter, shown” to lead to increased criminality nor to “the amotiCooper and Marshall describe the *sources of managerial vational syndrome”). Again. it must be noted that the emand white collar stress’*. They consider the individual pirical findingsapply only to an adolescent/post-adolescent manager to be subject to stresses intrinsic to the job, to population using illicit drugs (as opposed to an adult the role in the organization, as a result of his own career population using a variety of licit drugs).
LORETTA C. FORD
197
Chronic Illness in Children. Its Impact on Child and Family,
by GEORGIA TRAVE. Stanford University California, 1976. 556 pp. 919.50
Press,
Stanford,
This author set herself the ambitious task of writing a textbook dealing with psychosocial implications of various chronic illnesses in children and in addition, discussing the practical aspects of providing care for these children in hospital, home and community, and providing a framework of medical information comprehensible and useful to social workers. She has succeeded. to a surprising degree, in accomplishing this task. Moreover, she reviews basic concepts of child development, various psychiatric theories, concepts of death and dying, family dynamics in modern society, theories of stress and crisis, community resources and functioning of the health team. This comprehensiveness is the book’s strength as well as its weakness as is the case in many other textbooks. Many important subjects have to be gone over once lightly. Yet the bibliography is complete and well-selected, so that for those students who wish in-depth knowledge the book should also be helpful. Following the introductory material on the subjects mentioned above. there are individual chapters dealing with a series of chronic ailments that are common and important in childhood, including a chapter on the unborn child and his mother which contains a great deal of helpful information on high risk mothers, pregnancies, etc. There is appropriate emphasis on patients readiness for intervention during periods of growth and change, such as pregnancy and the immediate post-natal period. The chapter on asthma is extensive and presents varying viewpoints on the causation of asthma, very objectively. There is a good chapter on chronic kidney disease, and a short chapter on head injury-which I was surprised to see included-but the material certainly would be helpful to workers dealing with families involved in a critical situation around a child’s major injury. The chapter on hemophilia is very complete to the extent that it even has a section on adopting a hemophiliac child, which seems almost too uncommon a problem to deserve a separate section in a basic text. There are good discussions of arthritis, diabetes, leukemia, muscular dystrophy, sickle cell disease, etc. In some of the chapters, there is information for social workers to transmit to families who are seeking for the appropriate physician to deal with their child with chronic illness and to meet their own needs. In some cases 1 think this information would be extemely useful to families, in others I think it might put them in conflict because they have an established relationship with their physician who does not meet all the criteria delineated in the book, or they may not have available to them the ideal physician that the social worker would have them see. Thus, certainly the readers of the text will have to be discriminating in their interpretation of the material offered in this respect. Along a similar axis, in some instances when the author presents specific medical information about the various disease conditions, I can foresee some problems in the social workers application of this material with the family. Even in instances where I agree with the medical information presented (and in most cases this is surprisingly sound and complete) I can see that patients being followed by certain physicians would be in a bind if the social worker used the specific information she has gleaned from this text. For instance, on page 349 there is a statement that “urine tests should not be negative all day in the care of the diabetic child”. Although I happen to agree with this statement, there are many competent physicians who do not, and certainly in many other instances the specifics are not that unanimously agreed upon by members of the medical profession or their associates.
198
Book reviews
My two main criticisms of the text are the following: One is that there is not enough emphasis on growth and development from the point of view of what this does to the handicap, the cosmetic disfigurements and the child’s physical abnormalities. An important point for all those parents, professionals, etc. caring for children with physical handicaps, is the fact that whereas a small child who is handicapped can be appealing and readily accepted, this gets to be more and more problematic as the child grows into an adolescent or a young adult. This second point I think which should have been made more often, relates to the specific problems relating to sexual development and functioning in children with these various handicaps as they reach adolescence or as they contemplate their adult life. All too often, physicians fail to include sexual counseling and sex information in their communications with patients, and it would be hoped that social workers would be sensitive and interested in this aspect of patient care and health education. However, this text seems to have the same blind spots in this respect as does so much of medical practice in the community. There are two references to patients mentioning that they do not want to “marry a trip”, but these in an otherwise comprehensive text just stand out to point up the other omissions in this respect. Finally, one question that occurred to me in reading the book through is that there are so many nonspecific effects of chronic illness in childhood from a psychosocial point of view, both in respect to the child and the family, that it might have been more readable if the nonspecific effects of stress and illness had been discussed in a separate section, and the chapters had only dealt with the attributes of the particular illness that are significant for child and family. For instance, there is a rather repetitious discussion on marital conflicts caused by various illnesses in respect
to a number of chapters which could have been covered for an illnesses together. However, my criticisms of this book are few and my admiration for the amount of sound information that is provided under a single cover is tremendous. To my knowledge, there is no such information available anywhere at this time and the text should be extremely helpful to social workers and others dealing with children and familes around the subject of chronic illness.
development, the organizational structure. interpersonal relationships within the organization and boundary pressures from outside of the organization. Handy discusses “The Family: Help or Hindrance”. Much of this is oversimplified (e.g. the classification of individuals into four sub-types) but still of heuristic value. The McMichael chapter on “Personality. Behavioral. and Situational Modifiers of Work Stressers” is a valuable reclew. Its main focus is that the simple minded invocation of the concept “stress” impedes the field because it is used too indiscriminately and inconsistantly. Historically, studies in this field have viewed the source of work stress in either the individual worker’s personality or the organization’s structure. The “person-environment fit” approach as described by Harrison is refreshing in that it adopts a “no fault” attitude which is helpful. Johansen details one extended study of modifying a work stress setting, a Norwegian ship. Since by definition ships are relatively isolated from extraorganizational boundary friction, they form a good laboratory for studying a system and trying to introduce change. Future work in this field would profitably capitalize on longitudinal case studies as alluded to in this volume and as discussed in much of Levinson’s work (cf. H. Levinson. Grganizarionul Diagnosis. Harvard University Press. Cambridge, 1972). Department of Psychiatr) Massachusetts General Hospital Harvard Medical School Boston, MA. U.S.A.
JOEL E. DIMSDALE
Longimdhal Research on Drug Use: Empirical Findings and Methodological Issues, edited by DENISE B. KANDEL. Hemisphere Publishing. Washington, D.C., 1978. 314 pp. $22.50
Most of the papers in this book are revisions of articles commissioned by the 1976 Conference on Strategies of Longitudinal Research on Drug Use. The purposes of that conference (and of this book) were twofold: “to move towards a theoretical synthesis of findings on the antecedents and consequences of drug use in various populations and to provide an opportunity for detailed methodological University of Southern California BARBARAM. KORSCH critiques of longitudinal research and for the development School of Medicine and Childrens and codification of methods”. The second goal seems more Hospital oj Los Angeles, Cal& U.S.A. fully realized than the first: of the eight studies reported extensively, seven deal with adolescent or post-adolescent populations and one deals with adult alcohol use. Stress at Work, edited by C. L. COOPER and R. PAYNE. (Although 8 studies are reported extensively, it should be John Wiley, Chichester, 1978. 293 pp. 623.00 noted that 23 studies were used to compile the empirical results. Unfortunately, only one of these studies dealt with The topic of stress at work is something all of us are faman adult population and that study is limited to alcohol iliar with, from our personal experience, from reports of use in white males.) While acknowledging that minorities patients and friends, and increasingly from research in the are not dealt with specifically (only in direct proportion social sciences. This edited book brings together a diverse to their representation in the general population). Kandel group of investigators studying the area. The editors hope reflects a general laissez fuirc attitude on the part of that it will appeal to a broad audience in applied psyresearchers to the existence of a substantial adult populachology and sociology, personnel management, and occution who use. misuse and abuse prescription medications. pational medicine. The table of contents promises much With this sampling caveat in mind. Kandel’s “theoretical that would appeal to people in the above fields. synthesis of findings” are grouped into three major areas: It is, however, a very uneven book, even for an edited (1) patterns of involvement in drug use (such as “the period volume. Some chapters are poorly written; some are tanfor risk of initiation into illicit drug use is over by the gential to the topic. For the scholar, the book is also mid-20’s” and “addiction to heroin is not necessarily a flawed by its very scanty index. permanent state”). (2) antecedents of drug use (such as malSome of the chapters are commendable. Kasl’s chapter adjustive personality factors and “poorer school performon “Epidemiological Contributions to ,the Study of Work ance” precede the use “of illicit drugs”). and (3) conseStress” is a careful sifting-through of the data, and the quences of drug use (such as drug use “has not been limitations of same, on this topic. In a rather dry chapter, shown” to lead to increased criminality nor to “the amotiCooper and Marshall describe the *sources of managerial vational syndrome”). Again. it must be noted that the emand white collar stress’*. They consider the individual pirical findingsapply only to an adolescent/post-adolescent manager to be subject to stresses intrinsic to the job, to population using illicit drugs (as opposed to an adult the role in the organization, as a result of his own career population using a variety of licit drugs).