- Email: [email protected]
Genetics support groups: volunteers and professionals as partners
forms of persuasion. The authors then contribute a considerable amount of space to the Health Belief Model, leveling criticism against it based on the models neglect of emotions as factors in health and illness behaviors. Chapter 7, ‘Cancer: A Psychomatic Disease?’ is an interesting treatment of the age-old question ‘which came first, the chicken or the egg?’ or, more academically, do negative psychological traits seen by a coterie of studies as cancer-causing predate the existence of the disease or come consequent to it. The authors briefly review some of the literature addressing this dilemma and indicate that ‘faithful replications’ of studies pointing to the link between cancer and psychological traits are needed. The relationship between psychological states and the actual course of the disease is also briefly addressed and some literature reviewed. Recommendations to study stress and cell-mediated immunity and hormones and stress are also strongly suggested. The final chapter, ‘Implications for Care of the Breast Cancer Patient’ suggests that those addressing the stress of breast cancer should include the general public along with those with symptoms but as yet undiagnosed disease in their deliberations. Ray and Baum feel that clinical trials should tell us not only which treatments hold the best promise but ethical dilemmas involved in their administration as well. On a concluding page the authors offer the following advice: ‘Health education should aim to correct overpessimistic misperceptions. . . offer appropriate assurance, and avoid increasing anxiety unnecessarily when advocating behavior change.’ Practitioners involved in the care, support and education of those with brest cancer and their families would be wise to read this book, along with others including NCI’s ‘Breast Cancer Digest’ and ‘Copying with Cancer’ in order to get a comprehensive picture of the psychological and subsequent information needs of this audience. Barbara D. Blumberg, S. C.M. Patient Education Manager Fox Chase Cancer Center Philadelphia, PA, U.S.A.
Genetics Support GTOU~S: Volunteers and Professionals as Partners, Joan 0. Weiss, Jane-E. Karkalitis, Kathleen Kirk Bishop and Natalie W. Paul, Editors: Florence Dickman, Assistant Editor. March of Dimes Birth Defects Foundation Birth Defects: Original Article Series, Volume 22, (21,1986. Genetics Support Groups: Volunteers and Professionals as Partners is a 182-page paperback book which represents the published proceedings of a conference held in Washington, D.C. in June of 1985.
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The conference speakers were well known and well respected in their area of expertise and as such, the papers included in this book are accurate and current as of 1985-1986. However, one should keep in mind the rapid advances in the field of human genetics as it is possible that over the next several years, some of the information may become dated. The papers from a parent’s perspective were especially poignant. Beverly Sills and Jane Feldman-Paritzky expressed their thoughts so eloquently: ‘The impact of birth defects can be an isolating experience. The first thing you ask yourself is, ‘why me?‘. You have to get over that right away and ask, ‘why them? so that you can begin doing things for your children’. (Sills, p. 91. ‘When I’m getting to know someone and they ask THE question, ‘So, Jane, do you have any children?‘, the answer for me is ‘no’. But a flurry passes through my mind and my heart that some of you clearly understand’. (Paritzky, p. 891. The book is divided into three sections: Strengthening Voluntary Organizations, Self-help Groups and Networking. In section one, Strengthening Voluntary Organizations, there are papers on expanding membership, encouraging leadership, increasing communication, developing public relations, fund raising, grant applications, the role of the governing body as well as the professional/medical advisory board, involvement of the clergy, and other topics. Section two, Self-help Groups includes papers on peer counseling, families in crisis, life cycle needs and family support. Section three, Networking, includes a panel presentation about two federally funded genetic service networks (NERGG and MARGHN) and a state network (MASH). There is also a paper by the National Organization for Rare Disorders (NORD). This section would have benefitted from a discussion of networking activities in parts of the country beyond the New England and mid-Atlantic regions since there are now 10 federally funded genetic service networks around the country. The contact people for these networks are identified in Appendix C. There were also networking workshops regarding advocacy and education, both public and private. The appendices contain valuable information including a selected list of national information resources, genetic service network contact people and advocacy materials. One criticism of this book is the repeated use of the terminology ‘genetically affected individuals’. I do not believe the terms ‘genetically affected’ should be used as adjectives for an individual. The emphasis should be placed on ‘the individual’ who has a birth defect or a genetic disorder. Nevertheless, the book is a valuable resource and should be available to counselors and educators; especially if they provide service to individuals or their families with such problems. There is a strong emphasis throughout the book on the importance of communication and networking. This conference and its proceedings serve to open the door for increased cooperation among voluntary organizations as well as between those organizations and professionals.
313
Elizabeth J. Thomson, R.N., M.S. Clinical Coordinator Regional Gene tic Consultation Service Division of Medical Genetics Department fo Pediatrics University of Iowa Hospitals & Clinics Iowa City, IA 52242, U.S.A.
314
Genetics Support GTOU~S: Volunteers and Professionals as Partners, Joan 0. Weiss, Jane-E. Karkalitis, Kathleen Kirk Bishop and Natalie W. Paul, Editors: Florence Dickman, Assistant Editor. March of Dimes Birth Defects Foundation Birth Defects: Original Article Series, Volume 22, (21,1986. Genetics Support Groups: Volunteers and Professionals as Partners is a 182-page paperback book which represents the published proceedings of a conference held in Washington, D.C. in June of 1985.
312
The conference speakers were well known and well respected in their area of expertise and as such, the papers included in this book are accurate and current as of 1985-1986. However, one should keep in mind the rapid advances in the field of human genetics as it is possible that over the next several years, some of the information may become dated. The papers from a parent’s perspective were especially poignant. Beverly Sills and Jane Feldman-Paritzky expressed their thoughts so eloquently: ‘The impact of birth defects can be an isolating experience. The first thing you ask yourself is, ‘why me?‘. You have to get over that right away and ask, ‘why them? so that you can begin doing things for your children’. (Sills, p. 91. ‘When I’m getting to know someone and they ask THE question, ‘So, Jane, do you have any children?‘, the answer for me is ‘no’. But a flurry passes through my mind and my heart that some of you clearly understand’. (Paritzky, p. 891. The book is divided into three sections: Strengthening Voluntary Organizations, Self-help Groups and Networking. In section one, Strengthening Voluntary Organizations, there are papers on expanding membership, encouraging leadership, increasing communication, developing public relations, fund raising, grant applications, the role of the governing body as well as the professional/medical advisory board, involvement of the clergy, and other topics. Section two, Self-help Groups includes papers on peer counseling, families in crisis, life cycle needs and family support. Section three, Networking, includes a panel presentation about two federally funded genetic service networks (NERGG and MARGHN) and a state network (MASH). There is also a paper by the National Organization for Rare Disorders (NORD). This section would have benefitted from a discussion of networking activities in parts of the country beyond the New England and mid-Atlantic regions since there are now 10 federally funded genetic service networks around the country. The contact people for these networks are identified in Appendix C. There were also networking workshops regarding advocacy and education, both public and private. The appendices contain valuable information including a selected list of national information resources, genetic service network contact people and advocacy materials. One criticism of this book is the repeated use of the terminology ‘genetically affected individuals’. I do not believe the terms ‘genetically affected’ should be used as adjectives for an individual. The emphasis should be placed on ‘the individual’ who has a birth defect or a genetic disorder. Nevertheless, the book is a valuable resource and should be available to counselors and educators; especially if they provide service to individuals or their families with such problems. There is a strong emphasis throughout the book on the importance of communication and networking. This conference and its proceedings serve to open the door for increased cooperation among voluntary organizations as well as between those organizations and professionals.
313
Elizabeth J. Thomson, R.N., M.S. Clinical Coordinator Regional Gene tic Consultation Service Division of Medical Genetics Department fo Pediatrics University of Iowa Hospitals & Clinics Iowa City, IA 52242, U.S.A.
314