Idyll Arbor Personal Health Books
Idyll Arbor personal health care books explain a condition or a closely related set of conditions. The target audience is the person or the family of the person with the disease. We want to publish a book that the primary care physician feels comfortable about recommending to his/her patient as a way to understand the condition.
There are five aspects which must go into each book:
a description of the condition
how the condition comes aboutthe possible courses of the condition (and in the case of a condition such as Downs syndrome how new aspects show up at different times in the patients life)a description of the range of treatments used to improve the condition or to avoid decline for as long as possible, not limited to medical treatments
what the patient can do to improve his/her condition
what the patient should avoidwhat the people around the patient (family and friends) should do to help the patient and also maintain their own lifean accurate report of the range of patients feelings and concerns to help those around the patient understand what is going on
In the sections below we will talk about more of the details of each of these aspects.
In this kind of book it is crucial to discuss the subject at the appropriate level of complexity. Our goal is to present enough information so that the patient (or responsible person) knows as much about the disease as a primary care physician who has not done special research or study in the area of the condition.
This is not an easy task because physicians have a tremendous set of background knowledge about the way bodies function and disease processes which is not commonly understood by a lay person. On the other hand, primary care physicians see such a wide variety of conditions that it is impossible for them to know the details about all of them.
We expect authors of books in this series to explain the fundamental information (that doctors should already possess) in a way that can be understood by an intelligent and concerned reader. If the book is about sickle cell anemia or cystic fibrosis, the author will need to discuss genetics with enough detail to explain why the person has the disease and what the implications are for people who might also be carrying the gene. In some cases such as sickle cell, there are actually advantages to carrying one copy of the gene and we would expect our authors to present that information.
For concerns such as heart disease which are combinations of heredity and lifestyle, we expect the author to discuss all of the relevant aspects of how a person ends up having a problem. We expect the author to be up on the latest research and to present all of the plausible explanations. (A preference for one explanation is allowed.)
Diagrams and pictures are valuable in presenting an explanation so we expect an appropriate amount of non-text material. On the other hand, we do not want a picture book. We expect our readers to be able to understand text that is written clearly, simply and accurately.
We expect the author to err on the side of too much information rather than too little. (We have editors who are quite capable of removing anything that goes too far from the goal of the book).
Many conditions have a wide range of possible results. We expect the books to cover, in detail, any prognosis that has more than a 5% chance of happening. Any other prognosis above the 1% level should be mentioned. How the author chooses to organize the material is his/her choice, but the content must be entirely honest. It is hard to tell a parent that their child will probably die before s/he is twelve, but we think that being dishonest about it is worse. This is one place where the author should be aware of current research and should discuss possible new information which may affect the prognosis.
Many of the topics for these books involve conditions which affect a persons whole life. We mentioned Downs syndrome and the need to describe what will happen to the patient at various ages, but other conditions as widely varied as spinal cord injury and leukemia also have different implications when they occur at different ages. We expect the book to address the broad range of possibilities related to age of onset, current age and degree of involvement. One example is polio. It is possible to restore a limb affected by polio to a significant degree of functionality, but studies have also shown that the affected muscles do not last as long as unaffected muscles and that later in the persons life there will be significant loss of muscle strength. This kind of information needs to be in the books.
If it seems like there is too much information to be discussed in detail, there are two possibilities. First, the author must consider what we expect the reader to do with the information. (We expect the reader to understand the possibilities and be a working partner with the specialist in deciding the course of treatment and that does, in fact, require a lot of information.) Second, the author must ask if the book is trying to cover too wide a range of conditions. It is possible that two or more books may be appropriate. (We will not cover all cancers in one book, but we will also not write a separate book for each and every type of cancer.)
We expect readers of our books to be able to participate as working partners in the treatment of the condition. This may be the parents of a child with attention deficit/hyperactivity disorder participating effectively in preparing individualized education programs or a person who has had a heart attack working on rebuilding cardiac strength through an exercise program.
We dont believe that traditional Western medicine is the only source for treatment options. On the other hand, we expect non-traditional treatments to undergo meaningful testing before they are advocated in this series of books. When the condition is a disease such as tuberculosis and the known, effective treatment is a long-term, supervised course of antibiotics, the Western medicine is adequate. When the condition is inoperable cancer, then it is not enough to suggest enough narcotics to make the patient not care about the pain. Other forms of dealing with pain and other possible treatments for the cancer, outside of Western medicine, must also be discussed.
We expect that any discussion of treatment will explain both the positive aspects and the negative aspects of the treatment as well as the result of choosing not to have treatment. Chemotherapy and electroconvulsive treatment are examples of areas where this discussion may be especially appropriate.
Different physicians will have different ideas about appropriate treatment. We expect our authors to gather enough different opinions to cover all of the appropriate treatments and any widely practiced inappropriate treatment. (It is as important to not do the wrong thing as it is to do the right thing.) Basing the opinions on research and discussing the research in understandable terms is important.
As with prognosis, we expect our authors to extrapolate from current research to possible future treatments. We want our readers to be able to make plans, not just for now, but for an appropriate length of time in the future, based on what may be available within the next few months or years.
We know that the people surrounding the patient contribute significantly (both positively and negatively) to the treatment of the patient. In the case of alcoholism or drug dependence, one of the primary factors in successful treatment is the collapse of the support mechanism. On the other hand, rehabilitation from a stroke is almost impossible if the person who had the stroke does not have a strong and energetic support network to provide a caring means and, more importantly, a reason for going through the struggle.
A person who is codependent needs to learn that saying no is the most loving thing s/he can do. A friend of a stroke patient needs to understand that the depression and lack of caring are organic as well as psychological and that keeping up an undemanding but consistent friendship will eventually make a difference.
For the person with the condition, the idea of community can also be important. People who have had a traumatic brain injury lose some ability to read the feelings of other people and to act in a socially appropriate manner. They need to understand the change in their relation to their community and they need to make their community aware of the difficult-to-understand change in their abilities.
Another aspect of community is the role of a caregiver. An elderly woman whose husband has late-stage emphysema needs to understand that she may not be able to continue to provide all of the required care. Age is not the only factor here because parents of a baby who was born prematurely may not be able to meet all of the demands on them such as work and other children to care for. Alternatives such as visiting nurses and aids or the need to call on family and friends should be discussed when appropriate.
Different conditions require very different discussions of community, but the book needs to cover how the person with the disease and his/her family can gain effective support from the community around them.
Personal stories are how many people connect with facts. We expect each book to have stories told by people (or families) who have experienced the condition. The stories should be honest descriptions of the condition. They should not all focus on the upbeat, because the down side is also a reality. We do not want to create the feeling that the person or family with the condition is a failure because they cant always keep a positive attitude.
It is not enough to have just one persons experience. We are not looking for the story of one life. We are looking for examples of the range of possibilities from people with first-hand experience.
It is possible to tell the story from the first person (a person with a condition talking about what happened to him/herself) but not for the whole book and not with a chronological flow from event to event. Its okay to look back and say, "I did something really stupid because " but the author needs to explain the because and the hows and whys of avoiding the inappropriate behavior. If the primary author is someone who has the condition or a relative of someone who has the condition, we ask that they work closely with a medical professional (and reliable representatives of other appropriate fields) to make sure that the other aspects of the book are covered accurately and in sufficient detail.
It is more likely that a medical professional will write a book in this series. S/he will need to make sure that the human experience of the condition (as well as appropriate non-medical treatments) are covered adequately.
Perhaps the ideal situation is a person with personal experience (who is part of a support network) working with a medical professional to provide both the human and medical aspects of the condition. Both aspects need to be there for the book to meet our goals.
Putting the Book Together
The aspects of the book discussed at the beginning are not intended to be an outline for the book. They might be but other ways of organizing the book might also work better. We expect the reader to read this book through, and then to use the book as a reference when questions come up later or when the course of the treatment changes. A clear organization and a functional index are required.
Beyond that, though, we want the author to present the material so that it is one human giving information to another human. We want the author to speak as directly as possible to the parents of a child born with fetal alcohol syndrome explaining exactly why their child has the condition and at the same time offering the possibilities for making the childs life as productive as possible. We want the message to reach the whole family of a young adult with anorexia nervosa, outlining the dynamics and dangers associated with the condition as well as the possible treatments. We want to say to someone caring for a person with Alzheimers what they can do and also what they cant do to let them make the appropriate choices about the level of care that they can provide and the amount of help they will need as the disease progresses.
The idea is that there is a way to present each book which will make the information accessible to the reader. It is not always the same.
We have not discussed the size of the books up to this point because there is no rule for the size. The purpose of this series of books is to provide enough information. Different conditions will need vastly different amounts of information. Working with each author we can decide on the appropriate amount of information and the appropriate amount of emphasis to place on each aspect of the book.
We plan to produce the books in a 6" by 9" format with about 400 words per page. It is hard for us to imagine a book that would be less than 50 pages which could adequately cover all of the aspects of a significant condition. Over 400 pages would probably be too much.
The goal of these books is to provide a complete set of information to a person who has a health condition. The writing needs to be clear and understandable. It also needs to be complete. The medicine needs to be accurate and up-to-date. The human side must describe real people and real situations.
We believe that people can learn about their condition and make rational decisions based on a real understanding of their choices. We believe a good author can describe the situation accurately and at the same time in a way that can be understood. We also believe that it is possible for a patient to know more than his/her doctor and the goal of these books is to provide that level of information.
If you have a particular topic that you are interested in, please contact us at Idyll Arbor, Inc., Personal Health Books, 39129 264th Ave SE, Enumclaw, WA 98022. Include an outline for the whole book and a samples of one of the medical aspects and one of the human aspects of the condition.