We frequently get questions about how parents can best help their diabetic child and the rest of the family cope with living with a chronic disease. As the summer wears on and thoughts of school loom, we thought we'd share with you some research data, some practical advice and some ideas to think about. No one would consciously wish to have a child with a life-threatening disease, but when it happens we are drawn into a different life-style that, unlike dealing with an acute disease, will last for as long as we are parents. To some extent, even when our child is grown and leaves home, we remain concerned and have ties to the both the diabetes community and our child, so how we begin the process is important.
First we want to share some facts about those of us with diabetes to paint a fair picture of how we, as a group cope with this disease. In terms of noncompliance:
35-75% do not follow meal plans all of the time
20-80% do not administer insulin correctly all of the time
30-70% do not record blood monitoring level properly all of the time
23-52% do not give our feet adequate care all of the time
70-81% do not exercise adequately all of the time
Understanding how difficult it is then to live with a chronic disease, how do we as parents teach our children the reality of diabetes while not stealing their childhoods? Let me start with a true story about the conflicts that a parent of a diabetic child has to resolve: My stepmother's daughter had a birthday party for her first grader last month. After the party, she invited the little girls to the beach for a weekend of swimming, boating and just plain fun. One of the girls at the party has diabetes. Her mother declined the invitation to the beach for her daughter who was disappointed as were her friends that she could not go. Here is a mother of a young girl who has to keep her child safe and her decision is based on her knowledge of the imposition of diabetes on time, and the complications of the disease. She did not know the parents of the birthday girl enough to feel comfortable about asking them to test their daughter's blood glucose level 4 times a day or give her injections. And, what would have happened if all that fun had led to hypoglycemia? Was there enough time to explain all of the symptoms and interventions to strangers? But her daughter did go to the party near home and had a wonderful time. Her friends are learning about diabetes and talk about it. They do not discriminate, rather they include this girl. Having counseled families with children with chronic diseases in the past, we all know these situations. The answer is that we as parents need to be the adults in the situation. We are the voices of maturity, reality and humanity. We are the people who see the world in tones of gray, not black and white. We are the ones who allow our children to talk about their disease and how it makes them feel but keep them focused on self care. We are the ones who make sure that our children comply with treatment, and we are the ones who keep the disease from overcoming our family; rather we guard our identities, and those of each member of our family.
Let's look at some of the research that has been done about children and families that live with this chronic disease, diabetes. The first fact to share is a sad one, and that is that the number of children who develop diabetes is growing, and is increasing in very young children. If we understand the developmental goals of different ages we can get a clue as to how best to intervene. For example, young school children are busy learning to control their impulses, learning to master school skills, and learning to control their bodies. We, as mental health workers know all too well that it is the child who does not accomplish these tasks who is brought to see us. We know that the child's energy is used to "do" things during this time, and their self-worth is based on how well they perceive what they are doing. We as parents need to protect diabetic children from their normal need to master their worlds. With children under 12 or 13, parental testing of glucose levels was positively correlated with better metabolic control. Children who verbalize that testing their glucose level is their responsibility have an inverse correlation to good metabolic control. Of importance is the research finding that children who say they can talk to their parents about how they feel about having diabetes, also have better metabolic control. This was true for both younger school age children and for adolescents leading researchers to speculate that family support of blood monitoring and talking about diabetes leads to better blood glucose levels.
General family factors can affect metabolic control, and research has shown that social support can buffer the impact of family stresses on glucose levels. The relation between family stress and metabolic control is bi-directional, with poor control producing family stress as well as family stress causing poor control. Children's perception of family conflict was the strongest predictor, in one study, of poor adherence to insulin administration, meal planning, exercise, and blood glucose monitoring over a 4 year period. It has been suggested that when significant stress occurs, outside support from health professionals is called for. In summary, we have research to indicate that parental guidance and direction in diabetes management correlate positively to adherence to treatment, and metabolic control in school-aged children. This is made more difficult by the developmental stresses of "doing" what is normal for children at this time of life, and the fact that many parents want their children to become increasingly responsible for testing blood glucose levels when they are busy learning at school, on the playing fields, controlling impulses, and becoming friends.
The next group of research results have to do with how we as parents and our child perceive diabetes over time. Mothers reported that they found it easier to cope with diabetes as time went on, while children with diabetes reported emotional distress related to diabetes management increased over time. Noncompliance occurred in 1 out of 2 children to the point of endangering their health. This noncompliance emerged at about 3.5 years after diagnosis and at an average age of 15 years, indicating that 3 and 4 years following diagnosis and adolescence may be critical times for noncompliance. Researchers have also found that compliance is better for children who are diagnosed before 12 years of age than those diagnosed after that age. Others have found that those children who developed a history of regular medical visits in the first 4 years of having diabetes have the lowest incidence of retinopathy 10-12 years later. Of interest is the finding that there is more than one time of adjustment for children. The first is directly after diagnosis and disappears in a year, but reappears at 2 years post-diagnosis. Summarizing, we know that children have two adjustment periods to diabetes and that early treatment patterns are laid down within the first few years of diagnosis.
Researchers warn us that expecting too much too soon from young children in mastering glucose monitoring and controlling diabetes leads to more mistakes in their self- care, less compliance, and poorer blood glucose control. Studies suggest that during these school years, responsibility for diabetes tasks on a day-to-day basis should be protected from expectations for independent child mastery, and from parent withdrawal of support. Our children need us to keep them safe while they develop normal developmental skills.
Suggestions on how to incorporate this information into our daily lives are easy to write but difficult to carry out. First, we need to be the voice of health. We can all imagine that a holiday from diabetes would be nice, but our child does not have that luxury. They may beg or cajole, but the truth is we need to know their blood glucose levels. We as parents need to be as one on this subject. Using one parent against another may get an extra few minutes of curfew or dollars for allowance and is a time honored approach to parents, but it can not work when it come to your child's health. Doctor's appointments are kept, blood monitoring is completed, exercise is completed, healthy meals are prepared. The stronger you are, the less stress and anxiety about these issues your child will have to deal with. We all know that consistency makes us relax, and being consistent with care takes the edge off. If you can't be the "bad" guy, allow your health care team to take that role, but it is important for the mental health of your family. And as we said before this is a team effort. If either your or your spouse is the easy mark, then your child can play favorites and the family will feel the stress of noncompliance and all that brings, as well as the wedge between you and your husband or wife.
Children need to feel safe to talk about their diabetes and how it makes them feel. I know now how it feels to have this disease and there are times when I as an adult hate the process. Imagine how this is magnified in a child who has little power in this world of large people who "have the power". But just listening about feelings is not enough. We need to talk about the repercussions of ignoring diabetes. You are the voice of reason. A child may well equate a high blood glucose level with shame and blame. Blame will not help, but problem solving will set the stage for your child's future ability to deal with not only diabetes but other life events. Remember that school age children see things in terms of good and bad, black and white, etc. Just listen to their play and the punishments they mete out for transgressors and you will know that you need to mediate their punishing process. The approach must be more, how do we as a family get us back on track, not what did you do to fail? If you can find one, join a family support group to help with both the worse and better times. It's good for the family to know that others cope with the same things. Sometimes we can feel isolated and alone under stress and knowing that others are doing similar things helps, as does the comraderie that usually permeates these family support meetings.
It is important to keep reminding yourself that diabetes is a process and that no one controls a process all of the time. It needs to be addressed each day with respect, but it can be become a daily health habit for everyone in the family. Everyone can eat healthy, exercise together and deal openly with the any stresses. You can help your child, understanding the normal developmental processes, to understand diabetes and take care of it while not allowing it to become your last name, you know, "that diabetic family". And finally, if you remember little else, do take with you, that mental health means independent living, being able to love others and have meaningful work. That's where you are heading with all of your children, and diabetes is just one part of that. Keep it in perspective.
