Diabetes and Developmental Disability: Meeting the Challenge. A Manual and Teaching Aid for Caregivers. R. N. Linehan. Philadelphia: Diabetes Education and Research Center, 2002.
Diabetes is a leading chronic disease that affects 17 million people in our country. One million people are newly diagnosed each year. This is a disease that is more prevalent in minorities: 13% of non-Hispanic Blacks, 10.2% of Hispanic/Latino Americans, and 15.1% of American Indians and Alaska Natives have diabetes (National Institute of Diabetes and Digestive and Kidney Diseases, 2002). It is not known how many people with intellectual disabilities/developmental disabilities (ID/DD) have diabetes, but the number is more than likely representative of their ethnic background. On the other hand, many genetic conditions, for example, Alstrom syndrome and Bardet-Biedl syndrome, have higher incidences of diabetes associated with the condition. Therefore, it is imperative that books are available for individuals with ID/DD and diabetes and their caregivers that provide information on the disease in an easy-to-read format and include a list of resources for additional use.
This book by Linehan, and additional contributors, is a beginning. Linehan is director of the Diabetes Education Center of Pennsylvania Hospital and the education section of the Diabetes Education and Research Center. The latter organization is the publisher of this manual.
The manual is divided into two parts. The first contains information, interventions, and management of diabetes and, generally, 1- to 2-page teaching aids that correspond to the information. The introduction to the first part, which contains nine chapters, is entitled “Living with Diabetes and Developmental Disability.” The chapters are “What is Diabetes?” “Nutrition and Meal Planning,” “Exercise,” “Medication,” “Monitoring,” “Sick Day Guidelines,” “High and Low Blood Sugar,” “Long Term Complications,” and “Caregivers as Advocates.” The table of contents is organized so that the chapters are listed in the left column with the teaching aids that correspond to each chapter listed in the right column. This should be very helpful to readers.
Although the focus of the book is on diabetes and individuals with mental retardation, the introduction is really the only section that deals with the topic of developmental disability. Unfortunately, the author does not use people-first language. There is also confusion regarding the intended audience: the individual, the family member, or a professional staff member? Although the title suggests it is the caregiver, the author waffles between whether she is referring to a professional staff member (most likely direct-care) or a family member. This should be very clear, and certainly this information is needed for each type of caregiver.
The chapters are comprehensive and include the information that is needed to understand the disease, the treatment, and current management practices. What is missing are pictures. The American Dietetic Association has long published materials for individuals with low literacy levels. The authors of these materials successfully discuss diabetes and diet control with many pictures and simple word descriptions. This format would have been helpful in making this manual more user friendly. For example, an explanation of the pathophysiology of diabetes can be very daunting, and I believe that the explanation in this manual could have been enhanced with pictures and a longer, but simpler discussion of what happens to the pancreas and insulin production when diabetes occurs. This manual is useful when supplemented with other materials.
The information in each chapter is directed to diabetes education on a particular topic as reflected in the name of the chapter. Examples were rarely given on modifications or alternatives for persons with ID/DD who have other physical and/or intellectual limitations. For example, in the chapter on exercise, Linehan does not discuss possible exercises for persons who are in wheelchairs, have very limited mobility, or who are bedridden. This is an important area that is not addressed, but the information on the topic as a whole was comprehensive.
The teaching aids also represent the material in the corresponding chapters well. As Linehan notes, they were designed as handouts for an individual or a group. They offer quick reminders of the salient information needed on that topic. The information on secondary conditions caused by diabetes, such as neurological, vision, and skin problems, is especially good.
The author also includes a comprehensive list of resources for diabetes-related agencies; the list of organizations related to ID/DD is less comprehensive. Linehan only includes the Administration on Developmental Disabilities, the American Association on Mental Retardation, and the Association of University Centers on Disabilities. There is no question that this author is an expert on diabetes, but further consultation with an expert in ID/DD would have provided additional resources in this area.
In summary, this manual represents a beginning. At a time when health care providers and several federal agencies are concerned with health disparities, it is important that we do not forget people with ID/DD. Diabetes management is continuous, and everyone involved in the care of a person with diabetes, including persons with ID/DD, must understand and manage the disease appropriately. This manual provides comprehensive information for the caregiver, most likely a professional direct care staff member, on the disease, treatment, and management practices. This information must be supplemented with individual considerations concerning nutrition, mobility, other medications and treatments, and other health issues. I hope that this manual received national release and that future editions will include additional suggestions and modifications for persons with varying nutrition, mobility, health, and intellectual needs. Having professionals of different disciplines who work with persons of all ages with ID/DD should assure this.