ISSN 1535-7821 Vol. 31 No. 1 2015
Greetings fellow CAPHIS members! With MLA 2015 just around the corner, I hope you’ll take note of the many wonderful educational and social events scheduled by CAPHIS chair-elect Mary-Kate Haver in your plans for the Austin conference! I know I’m looking forward to the contributed papers sessions under the themes of “Ethnicity/Culture and Consumer Health” and “Pets and People.” In addition, Mary-Kate has arranged for a group tour of the Texas Medical Association Knowledge Center on Monday, May 18. (For details, see Mary-Kate’s article below.) I myself will be on hand to exhibit the CAPHIS poster (#247) during the first poster session on Sunday, May 17 at 2 p.m.
We will also be gathering as a section for our annual business meeting on Tuesday, May 19 at 2 p.m. in the Austin Convention Center Room 15. Please join us to hear about a number of initiatives begun over the past year and let us hear from you as well – your input is vital to the work of CAPHIS and the support of consumer health librarians!
If you are unable to join us for the meeting in Austin, I hope you’ll follow the official blogger for CAPHIS events, Talicia Tarver! (See http://npc.mlanet.org/mla15/.) Thank you for volunteering for this task, Talicia!
We congratulate our new chair-elect for the 2015-2016 term, Judy C. Stribling as well as our section nominee to the MLA Nominating Committee, Meredith Solomon! I know that CAPHIS will continue to be in good hands!
I am sorry to announce the recent resignation of our past-chair, Christine Marton. We will miss Christine’s experienced and knowledgeable leadership, and we wish her all the best!
I look forward to seeing you in Austin!
Kay H. Smith, Chair, 2014-2015
MLA Consumer and Patient Health Information Section
MLA'15: Librarians Without Limits - Austin, Texas
On behalf of the Medical Library Association (MLA) Consumer and Patient Health Information Section (CAPHIS), please save the dates to attend the following CAPHIS events at MLA’15 in Austin, Texas.
Pets and People
Sunday, May 17th
4:00pm - 5:55pm
Ethnicity/Culture and Consumer Health
Tuesday, May 19th
3:00pm - 4:25pm
CAPHIS Poster Session
Sunday, May 17th
2:00pm – 2:55pm
Austin Convention Center
Texas Medical Association (TMA) Tour
Monday, May 18th
10:15am - 12:30pm
Meet in lobby of Austin Hilton Hotel
Tuesday, May 19th
2:00pm - 2:55pm
Austin Convention Center – Room 15
There is something for everyone at all CAPHIS events! If you are not currently a CAPHIS member, please be sure to talk with our members to learn about how CAPHIS can benefit you and your institution.
We look forward to seeing everyone in Austin this May!
Mary Katherine Haver, Chair-Elect, 2014-2015
MLA Consumer and Patient Health Information Section
MLA 2015 will be here soon! If you are looking for a unique consumer health CE opportunity, check out the special CE offering Health and Wellness @ the Library: The Essentials of Providing Consumer Health Services. The 12-unit class is very comprehensive; it is being offered as a blended online and in-person class in order to cover all the material. It is structured so that the online portion begins the last week in April and the first part of May, then the class concludes with a 6-hour session on Saturday, May 16 in Austin. Participants will be able to tailor assignments to their own working environments, making the learning and outcomes highly relevant. The class always receives rave reviews when taught exclusively as an online class, but this class will give participants a chance to have a great new experience! But the best part is this: participants who enroll and take part in the entire class (starting April 27,) will earn 12 MLA CE units, and they will be eligible to apply for Level I CHIS, the Consumer Health Information Specialization! This is a wonderful opportunity to achieve CHIS, since normally three or more CHIS classes must be completed in order to earn the required number of credits. The course description and more details are available on the MLA CE schedule for Saturday. Register soon to take advantage of this great opportunity! If you have any questions, please see the course page for details or contact the instructor Kelli Ham.
Glasberg, Beth A., Ph.D., BCBA-D and Robert H. LaRue, Ph.D., BCBA-D. Functional Behavior Assessment for People with Autism: Making Sense of Seemingly Senseless Behavior. Second edition. Woodbine House, 2015. 171p. Index. ISBN 978-1-60613-204-3. $21.95
Using a methodical process to assess the functional behavior of all age groups, the authors have created a blueprint for parents, grandparents, teachers and caregivers to understand the wide variety of actions and reactions that are not easily explained by conventional wisdom. The methods are time consuming, but easy for the lay person to understand. The purpose of the second edition is to support the original material and provide new protocols that have developed during the years since the publication of the first book. Although the book is intended for use with autistic people, the information presented here is adaptable for people of all ages and abilities. The authors use real cases to illustrate various behaviors. Appendices include twelve data sheets to use when developing the functional behavior assessment. A list of reference sources is included. Recommended for academic libraries, public libraries and health resource centers. Beth Glasberg is the Director of Glasberg Behavioral Coonsulting Service, LLC and an adjunct professor at Rider University. Robert LaRue is a Clinical Associate Professor at Rutgers University and Director of Behavioral and Research Services at the Douglass Developmental Disabilities Center. The book is part of the "Topics in Autism" series.
Cynthia L. Butcher, MLS. MeadWestvaco Family Resource Center, Dayton Children’s Hospital. Dayton, Ohio
Nancy Keene, co- author of twelve consumer health books, numerous journal articles and long-time advocate for ill children and their parents, does not disappoint with the third edition of Your Child in the Hospital. The subtitle indicates that this guide is intended for parents, but it also has helpful information for siblings, family, friends, teachers, and classmates. The text is useful to anyone acquainted with an ill child requiring long or short-term hospitalization.
Written in the same straightforward, consumer-oriented style as previous editions, Keene utilizes concise paragraphs, bullet points and brief personal stories from over 40 parents conveying important aspects of child hospitalization. The prose is suitable for an 8-10th grade reading level. Bold, italics and headings are used for emphasis. A familiar, first person writing style is employed throughout.
What to bring, how to communicate with health professionals, where to seek financial assistance and who to notify at school are just a few covered topics. Emotions, feelings, and common behavioral aspects are explored. A detailed table of contents allows readers to quickly locate topics of interest. The book includes a child’s hospital journal, a packing list, and an updated resource section with recommended books for all ages and listings of helpful organizations. This comprehensive book is a must-have for consumer collections.
Reviewed by: Debra J. Kakuk Smith, MLIS, MA, College of DuPage Library, Glen Ellyn, IL
Same diet, new package: The Microbiome Diet book is a new package for a healthy, well-balanced diet. The author spends the first few chapters touting the benefits of the diet and making references to “studies.” However, there are no peer-reviewed journal studies cited; only reports from popular media sources are listed. The “studies” have lots of implied results, but no solid causal evidence to back up the claims.
The author does a great job of cheer-leading for his cause and tends to repeat the same information over and over in the narrative. He does use slightly different examples to make his points. He continually mentions that many people have “leaky gut.” According to sources such as WEB MD, leaky gut means you “have a diagnosis that still needs to be made.” In other words, leaky gut is not a recognized diagnosis in most medical communities although it is in the areas of integrated and alternative medicine.
The principles of the Microbiome diet are sound, although nothing really new. Avoid foods that make you feel bad; cut out gluten, sugar, and (temporarily) eggs and dairy; eliminate “bad” fats; cut down on stress because stress makes you gain weight; and eat lots of fruits and vegetables (just like mom told you).
Supplements are recommended to increase weight loss. There are no data to back up any of the claims that these will repair and or rebalance the microbes in your gut. There are no evidence based studies that these will cause weight loss, either.
A positive aspect of the book is the section with a pantry list, menus and recipes. The second half of the book is filled with these and has many options for healthy eating. Some use ingredients that are a little exotic and may be difficult to find at your local grocery store. However, the plan is well laid out and would be easy to follow.
The book is easy to read, and leaves you with the enthusiastic message that you can lose weight and balance your gut bacteria if you follow this diet. There are two things in the book that would contribute to success if you follow the book. First, the diet is out in detail so that you don’t have to make any decisions about what to eat. Second, it contains a lot of common sense: eat right and you will feel better. Do you need to buy the book for this? Sure, if it helps you stick to the diet. But there is nothing new or magical about it, despite the author’s claims. The author would make a much stronger case if there were scientific evidence to back up his opinions.
Reviewed by: Kathy East, MS, Central Peninsula Hospital, Soldotna, AK
Largent, Mark A. Keep Out of Reach of Children: Reye’s Syndrome, Aspirin, and the Politics of Public Health. (A Bellevue Literary Press Pathography). Bellevue Literary Press, 2015. 272 p. Index. ISBN 978-1-934137-88-8. $19.95.
Few things terrify parents more than the thought of a mysterious, agonizing, often deadly illness striking their children out of nowhere. This is what parents around the world faced in the last half of the twentieth century with the increasing incidence of Reye’s Syndrome as described in this “pathography” by one of its more fortunate survivors, Mark Largent. As the “aspirin hypothesis” increased in importance along with the peak number of cases in the US in the 1970’s and early 1980’s, this book might have followed the same triumphalist narrative that Largent describes as the prominent theme in the media following the advent of warnings against aspirin use in children and the concomitant disappearance of Reye’s as the 80’s progressed. However the author’s purpose is to detail the complexities and uncertainties surrounding the investigation of a deadly new disease, as well as the subtle and overt agendas that influence the health policy-making process. To that end, Largent reveals that the aspirin hypothesis is yet unproved as the cause of Reye’s Syndrome, highlighting along the way the difficulties we have with medical uncertainty, particularly when the human costs are so high.
It is this very complexity that makes this book, while an excellent case study for public health students and practitioners, less appealing to the general public. The high reading level and detailed descriptions of congressional hearings will limit its receptivity with all but the most steadfast public health enthusiasts among lay users. Still, Keep Out of Reach of Children is a worthy purchase for larger collections.Reviewed by: Kay Hogan Smith, UAB Lister Hill Library of the Health Sciences, Birmingham, AL
Written by a licensed social worker who has worked in the disability field for over ten years and director of the Kindering Center’s Sibling Support Project in Seattle, Washington, the authors have drawn upon not only their own experiences but solicited input from a number of special education experts from the university sector as well as the public sector.
This book is a comprehensive guide for individuals who has siblings with special needs, the feelings that this sibling relationship fosters, and actionable behaviors and resources that will assist in the successful transition from sibling to eventual caregiver. The sibling of a person with a developmental, physical or emotional disability is often faced with feelings of exclusion, guilt, regret and fear of the future as they are expected often to share in the decisions made after the death of their parents. Chapters focus on the sibling relationships for children and teens, as well as adult siblings and the issues that aging and disability provide. Offered are specific roadmaps of how to take care of self, finding and exploring resources within the community, advocacy groups, and medical, legal, and financial concerns as the person with a disability progresses through adulthood. Websites that are mentioned in the book are clearly described in the appendix as well as a section on what siblings would like parents and service providers to know.
Of special assistance is the section on support groups available to siblings of those with special needs, how to connect, and opportunities to share experiences with others that have lived the journey of a sibling. This book can also be supplemented in your collection by the book by Rachel Simons, Riding the Bus with My Sister, a first person account of being a sibling to a sister with intellectual and developmental disabilities.
Reviewed by: Carol Ann Attwood, MLS, AHIP, MPH, RN, C, Patient and Health Education Library, Scottsdale, Arizona
Dr. Offit, Chief of the Division of Infectious Diseases and Director of the Vaccine Education Center at the Children’s Hospital of Philadelphia, professor of vaccinology and pediatrics at the University of Pennsylvania School of Medicine, author, and debunker of the concept that vaccines cause autism, offers a thorough, thought-provoking, and highly readable chronicle of the rejection of modern medicine by a surprisingly large faction of religious fundamentalists of all denominations, specifically those who deny medical intervention for their children, turning instead to the healing power of their faith.
With devastating chronicles of parents literally watching their children die before them, Offit, while clearly and passionately on the side of modern medicine includes insightful commentary on the scriptures and tenets of the varying faiths that lead parents to take such actions.
Offit also gives fascinating insights into the history and current practices of US government involvement in protecting the rights of children. The 1974 enactment of the Child Abuse Prevention and Treatment Act (CAPTA) was adulterated by the inclusion of a “religious exemption,” inserted by (then) Christian Scientists Bob Haldeman and John Ehrlichman (of Watergate infamy) stating that “No parent or guardian who in good faith is providing a child solely by spiritual means—such as prayer—according to the tenets and practices of a recognized church through a duly accredited practitioner shall for that reason alone be considered to have neglected the child.”
Particularly compelling is the story of Rita Swan, a once devout Christian Scientist, who with her husband watched her son, Matthew, die of treatable infection. In 1983, the Swans founded Children’s Healthcare Is a Legal Duty (CHILD), and Rita “has made it her life’s mission to undo” CAPTA.
This work is highly recommended.
Reviewed by: Claire B. Joseph, South Nassau Communities Hospital, Oceanside, NY
Singer begins this memoir with a visit to her son’s college, during which she finds him exhausted, starving and dehydrated because his OCD has kept him from sleeping, eating, or drinking anything for a week. She tells a harrowing story that moves from IV rehydration to high-dose treatment with selective serotonin reuptake inhibitors, to intensive exposure response prevention (ERP), a form of cognitive-behavior therapy for people with OCD.
Singer’s story has a happy ending, as her son completes treatment and graduates from college. But the panic and desperation of a parent whose child is debilitated by mental illness are here as well. Singer’s co-author is Clinical Psychologist Seth Gillihan, who contributes brief and accessible explanations of OCD and its treatment. Gillihan’s comments cite evidence from the medical journal literature, and are highlighted to set them apart from the rest of the text.
Reviewed by: Mira Geffner, Bay Area Cancer Connections, Palo Alto, CA
Consumer Connections (ISSN 1535-7821) is the newsletter of the Consumer and Patient Information Section of the Medical Library Association. It is published on the CAPHIS website quarterly. Notification of publication is sent via the CAPHIS listserv. CAPHIS is the largest section of the Medical Library Association.
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