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How We Try to Help Families
We're educators, problem solvers, and cheerleaders I think that we play a non-traditional role in taking care of diabetes, in the sense that we are educators, problem solvers, and cheerleaders. I think most important of all is that we to try not to be judgmental and try to be empathetic and supportive and to recognize that our patients are carrying a heavy burden. Our role is to try to support them and to boost self-esteem, to encourage them when they are feeling down rather than to beat up on them and make them feel worse. I think that those are some of the things that I feel are important in taking care of diabetes. -Joseph Wolfsdorf, MD, BCh, Associate Chief, Division of Endocrinology I see all the newly diagnosed families on the initial emotional admission. I tell them that things will get easier, and that they will return to a different life, but a good life. It’s not necessarily an abnormal life. I tell them too that their child isn’t sick, but that something just stopped working. Their pancreas stopped producing insulin. I tell them that they’re the same little beings from head to toe; that they can do anything and be anything. -Maureen Powers, RN, DNE, Registered Nurse, Diabetes Nurse Educator, Diabetes Program I think parents are so overwhelmed that they concentrate on details and they put off some of the bigger questions because they may be afraid to ask them. We tend to bring them up because we know that those questions are probably lurking and might be making the parents very anxious. They are concerned because of adults they know who have had complications due to diabetes. One of the big things we try to mention right away is to say that the adults with diabetes that you know might not have or necessarily had the best tools all of their lives and that we now have many more types of insulin. We know a lot more about how to control blood sugar and how important it is, so that they shouldn’t be looking at an adult with diabetes and thinking this is going to happen to their child. But at the same time, many parents are afraid to ask those questions because they don’t want to hear the answer. They are afraid it’s going to be something terrible. -Christina Luedke, MD, PhD, Physician, Diabetes Program It’s important to normalize the feelings of parents. So yes, this is a difficult illness and life will change in a moment. It’s normal to feel sad, angry, and overwhelmed. It’s also important to reassure families. I think parents of younger children, toddlers, or school-aged children, worry about school in different ways than parents of teenagers going off to college, so there are a lot of different worries or concerns that families bring up. But emphasizing the basics, and increasing a family’s knowledge of diabetes, it may help them work together as a family to cope. -Jennifer Rein, LICSW, Licensed Social Worker, Diabetes ProgramKeeping things simple and concrete I try to help families by keeping things very simple and very concrete. Maybe writing a daily schedule on a white board, that just lists the time you wake up, when you have a blood sugar check, when you eat breakfast, when you have a shot. There are no rewards attached to it, but everybody is informed about what is going to happen today in terms of insulin and food. Sometimes families find this a helpful tool to help them develop a structure around diabetes. Other times, even this small task feels overwhelming -- so it becomes important to focus on what will not feel overwhelming and what might work. Diabetes care is very individual to the family. -Jennifer Rein, LICSW, Licensed Social Worker, Diabetes Program Understanding what is possible for an individual child and family We try to individualize therapy. I think that is terribly important because for chronic disease management, the non-adherence to prescribed treatment is a big challenge. It is all about trying to understand what is possible for an individual child and family. What they are able to accomplish is very important, so I like to think that I don’t judge people. That is not my role. I don’t want to ever have that role. I tell my patients you’re not in a court of law when you’re sitting here and I’m not the judge. I want you to feel comfortable telling me what your concerns are. I recognize that patients come into the doctor’s office and they see us as authority figures and they feel as if they are being judged, so my own style is to try to be empathetic and non-judgmental. We can try to figure out alternative methods and options for managing diabetes. Sometimes there are compromises. Plan ‘X’ may be the ideal, but if you can’t do it then there is no point in you feeling bad, so let’s find out what you can do. It may not give optimal blood sugar control, but it will keep you going for a while and maybe in a year from now you will be able to do more. In the meantime, rather than not take your insulin or come into the office and fabricate the truth, I want you to feel comfortable what you are really doing so that we can figure out the best possible compromise. -Joseph Wolfsdorf, MD, BCh, Associate Chief, Division of Endocrinology It’s important to meet the family where they are at and just listen. I always start with the basics, “How is everything going?” If something is not going well, this is a prime opportunity to offer support and guidance. Kids are really good at telling us what is hard about being diagnosed with diabetes, and what’s hard about living with diabetes. I think it’s important for kids to focus on what’s going well, what’s positive, what’s wonderful and great in their lives so that diabetes can then become a part of life rather than something that dominates all fun and positive activities. -Jennifer Rein, LICSW, Licensed Social Worker, Diabetes ProgramThe most important thing we do is to try to simplify it as much as possible, and we say the we are going to be giving them a lot of information, but that there are a few basic things that we need them to know how to do before we can send them home. When we do send them home, we are going be in daily contact with them to help and continue to teach them so that they don’t feel that they have to understand everything before they go home. As long as they know the skills, we can help them on the other end of the phone line. Another big thing we always to tell them is that diabetes will not interfere with the activities of the child since parents are often concerned with this. Their child can continue doing any sports, any type of activities he or she was doing before. We just have to add some blood sugar checks around it and know how to give snacks. -Christina Luedke, MD, PhD, Physician, Diabetes Program Continuous growth and education I think of the whole diabetes care enterprise as being a training program--a continuous and educational experience for the patient. We have to take individuals who may have never heard of insulin, carbohydrates, or any of these things and over a period of time train them to the point where parents of young children and the older children really understand diabetes and can become in a sense their own doctors so that they can take care of themselves in real time. They can make real time decisions about how much insulin to take, what food to eat, how to plan for sport events they want to participate in. So the physicians, dieticians, and diabetes nurse educators are all educators. Even the mental health professionals are educators because they talk about how to cope with living with diabetes and how to deal with various problems that can arise. The education process begins literally on the day that the child is diagnosed with diabetes. At one time, I held a view that when a patient comes in my office to see me for a routine visit, I want them to understand their diabetes just a little bit better when they leave the office than when they came in to see me. Then I know that the encounter was successful. -Joseph Wolfsdorf, MD, BCh, Associate Chief, Division of EndocrinologyAge is an enormous factor. If you have a three or four year old child, you have to be more lenient in what type of goals you can expect to achieve in terms of blood sugar control. So, the parents of these young kids will need quite a bit of support. Teens need different types of supports on more of an emotional level. If they are having emotional difficulties, we help by contacting our social worker and getting some counseling or I encourage peer support through the diabetes camps. -Gregory Goodwin, MD, Physician, Diabetes Program Interventions for children and adolescents The most important intervention that I can provide for a child or adolescent with diabetes is introducing them to other children or adolescents diagnosed with diabetes through support groups, camps, or individual meetings. These encounters help to increase feelings of normalization, decrease isolation, and increase social support. -Lauren Mednick, PhD, Clinical Psychologist, Department of Psychiatry Honoring and meeting the needs of the family Families come from all over. Everybody comes with their own story, and it is important to just recognize that even though we know so much about diabetes, we still need to honor and respect where these families are coming from, and work hard to honor and meet their needs. I think our clinicians do a wonderful job of listening to families and working with them to figure out together what is going to be the best plan, and what’s going to be the most attainable so that the child can be healthy. -Jennifer Rein, LICSW, Licensed Social Worker, Diabetes Program
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Hospital Boston Department of Psychiatry. All Rights Reserved. The information on this website should not be taken as medical advice, which can only be given to you by your personal health care professional. Updated: June 8, 2009 |
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