Through Disease Management Ownership, Comes Enlightenment and Freedom of ChoiceFriday, September 27, 2013
Jane K. Dickinson, RN, PhD, CDE has written a book aimed at dispelling old-fashioned ways of thinking about diabetes, and empowering people with the disease by enlightening them about disease self-management.
By: John Parkinson, Clinical Content Coordinator, DiabetesCare.net
Hearing the diagnosis of diabetes is a lot for people to absorb. Aside from the initial shock, it can bring about feelings of fear, guilt, and shame.
While processing this news, people may block out what is being said to them by their provider. It is during these moments that people need to know how to take care of their condition; yet this information may be lost and people can often begin their journey with diabetes in a negative and unprepared way.
Recent studies have shown that the earlier people are prepared to manage their disease after diagnosis, the better their quality of life can be in the long-term.
Certified diabetes educator Jane K. Dickinson (pictured, left) understands this and says her new book, People With Diabetes Can Eat Anything: It’s All About Balance, is aimed at changing how people with diabetes (PWD), caregivers, and even some providers think about how PWD manage their disease in the context of food.
Dickinson says diabetes is not about limitations, but conversely, empowering people to take ownership of the disease by helping them to understand the disease so they can make informed choices in managing diabetes. For example, she looks at the outdated concept that people with diabetes “can’t eat sugar.” Dickinson points out this idea has been around for such a long time that it’s deeply engrained in society. She wants people to replace this thought process with the idea of moderation and healthy food choices.
Undoing layers of messages that have been perpetuated for generations can take time, but she is optimistic that healthcare providers are transitioning to a different approach. Along with the addition of Internet and social media, these changes can help bring modern and successful disease management to the forefront.
Dickinson says her book has been approximately 10 years in the making, spawning from a presentation she gave with a colleague to fellow providers. She brings both her wealth of professional and personal experience to the book.
On a personal level, Dickinson is a type 1 veteran having had the disease for 38 years. Professionally, Dickinson developed her local hospital’s diabetes education program back in 2000 and managed it up until 2011. Since then, she has become the Program Coordinator/Faculty for the Diabetes Education and Management Master’s Program at Teachers College Columbia University. Dickinson also has a blog where she writes about everyday topics related to diabetes, which appears here. Some of her selected blogs appear on DiabetesCare.net and can be found here.
Dickinson says her book is written for anyone with diabetes, caregivers, and even providers. One of the unique aspects of the book includes activities for the reader. Dickinson designed the book with occasional blank, open lines just below questions so that people can respond right in the book. She encourages readers to write notes, highlight sections, and even dog-ear particular areas that are useful to them. Dickinson has also included a helpful feature titled Tasty Morsels in the book, which offer quick little tidbits of information and provide helpful suggestions.
DiabetesCare.net spoke with Dickinson recently about her book including learning her approach to how people with diabetes can be freed from the old-fashioned thoughts on eating, why goal setting should be PWD centric, and the important role of caregivers in disease management.
DiabetesCare.net: One of the bigger themes of your book is about breaking from the long-time ideas of how people with diabetes are supposed to eat. Do you think some of that old-time thinking is still prevalent today?
Dickinson: Yes. The messages that people heard growing up were told to their parents and their grandparents. And in some places, it is still part of the healthcare establishment today. You can imagine messages as strong as “people with diabetes can’t eat sugar” are so engrained—not just in the people who have diabetes or health professionals—but in society in general. It’s perpetuated that way. I am a nurse and the average age of nursing faculty is between 51 and 61 years. While educators always work hard to stay current, it takes years for research to translate to practice, so we teach what we know.
However, I do think it’s starting to change. For one thing, health care professionals are using social media and new technologies for clinical care. And as a new generation of healthcare professionals comes onboard, they will be required to be more connected to their patients, so health advice will mirror more modern clinical guidelines and approaches.
DiabetesCare.net: At various points in your book, you break down diabetes as being manageable and assert that people with diabetes need that reassurance. Do you think many people with diabetes are not getting that message now?
Dickinson: I think it is a similar challenge. Upon hearing the diagnosis, people with diabetes can be dealing with so much emotion and stress associated with it. I picture a tidal wave hitting the person who says to herself or himself, ‘I cannot do any of the things I like to do,’ which translates to not being able to eat any of the foods that person likes to eat. People might go to a place of negative thoughts and think of diabetes as a prison sentence.
My goal with the book is to help people turn around their thinking and say, ‘I’m going to be healthier now,` or “I’m going to lose weight.’ For example, some people go on to do competitive athletic events they never knew they were capable of doing.
DiabetesCare.net: In chapter five you discuss setting goals. Can you explain your approach to setting achievable goals?
Dickinson: From what I have read, working with people with diabetes, and my own personal experience, I have learned that the person who is going to work on this goal has to be invested in the goal. The most important thing about setting goals is that it is the person’s goal, and not the healthcare provider’s goal.
Another important aspect of goal-setting is that they be realistic. We can break a goal down into small chunks, because it’s important to feel a sense of accomplishment and that you can check off on completing a goal—whether it involves weight loss or starting an exercise program or something else obtainable.
I listened to a talk at a recent conference about behavior change. The speaker said that ability is more important than motivation, and I believe he had a good point. If you don’t have the ability to achieve the goal, then it’s not a good goal. If you don’t live in a safe neighborhood to take a walk, then you don’t have the ability to begin a walking program.
DiabetesCare.net: You have a chapter that discusses caregivers. What are some of the important ideas to get across to the caregivers of people with diabetes?
Dickinson: For caregivers of any age group, empower the person with diabetes to own their disease by doing whatever parts of care they can.
I see couples where the husband has diabetes and the wife is the caregiver and it becomes overwhelming. The wife may be forcing the husband to go to these appointments, take medications, and eat certain foods at certain times. It can lead to a lot of resentment and even harm the relationship. And it doesn’t do anything to help the person to take ownership of his diabetes. These caregivers are often frightened and care so much about their loved one that they just want what’s best for them. They need to be educated, encouraged, and empowered as well as the person who has diabetes.
DiabetesCare.net: You have a unique approach in going back and forth between discussing type 2 and type 1 patient scenarios. Do you see this book as being for anyone with diabetes?
Dickinson: Definitely. The message of the book goes out to everybody, including people with diabetes, those who care about them, and healthcare professionals. Everyone needs to know that everyone with diabetes can be empowered.
Also that it’s about choices. People who are educated and empowered know that making healthy food choices can lead to better outcomes in the long run. We all choose to eat less healthy foods every once in a while, and that’s ok. That doesn’t make us bad people. One of my goals with the book is to help everyone see that what we eat is our choice, not a can or can’t, should or shouldn’t decision. If we are invested in our health and well-being, and if we make healthy choices most of the time, we are more likely to be successful with diabetes management and then get on with living our lives.
Someday I hope to stop hearing people asking questions like, ‘should you be eating that, or can you eat that?’ My hope is that those kinds of questions will disappear.
DiabetesCare.net: What are your hopes for the book?
Dickinson: I believe the book is for anyone, but it may have the most value for people who are new to diabetes—either type 1 or type 2—caregivers, and people who maybe have had education in the past, and it has been a while and they are losing steam in taking care of their diabetes. There’s a lot of information on the Internet, but many people struggle with sorting through all of it. I hope the book will give people a boost, provide clear information, and help people find their motivation.I really hope to get this book into the hands of those who need education and support and just don’t feel like they have that now.
For readers who are interested in finding out more about Dickinson’s book or want to purchase it, they can go to her website here.