by Annmarie Lobdell
Juvenile Diabetes is one of the most common chronic childhood diseases in America today and caring for a child who has been afflicted with the disease can prove to be an overwhelming task. At times, the responsibilities can cause enough emotional stress to affect the entire family in some way. The demands placed on parents of diabetic children from middle class families in the year 2000 have led many of them to feel that it is necessary to focus only on the well being of their sick child which can create sibling jealousy, and hesitation of the parents to leave the children in the care of anyone other than themselves, leaving them little or no time to maintain their own psychological health; therefore these parents should be given the opportunity to anonymously express their emotions, which could be accomplished through the Internet, in addition to physically removing themselves from the situation at regular intervals. These parents have an enormous amount of information to learn about caring for their diabetic child, and many fear they wonĖt be able to manage the treatment schedule. They often feel responsible for their childĖs illness. These are some of the issues addressed in this paper using research from books, journals, interviews with parents, pediatric case workers, and a pediatrician, and through the analysis of an on-line community called HYPERLINK "http://www.childrenwithdiabetes.com" www.childrenwithdiabetes.com.
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Coping Emotionally While Caring For A Diabetic Child
Every day millions of people all over the world begin and end their day without ever having thought about, and completely oblivious to, their health and the health of those around them. Do they believe that they are immune to illnesses that afflict so many other people or is it just a matter of having other responsibilities, such as jobs, education, and children, which take precedence over a healthy lifestyle? I am no exception and often find that I am guilty of ignoring my own health issues because I am too busy being a parent, student, or volunteer. Most parents donĖt spend very much time worrying about diet and exercise, or the schedules by which they are bound, so you can imagine oneĖs shock when the physician enters the room at the end of an exam and blood work-up and says, ÏYou have diabetes.Ó
From that moment on this individualĖs life will never be the same, priorities will change, and the routine that he or she once knew will cease to exist. In other words this person has to construct a new reality that will now become their life because caring for diabetes requires a proper diet and exercise program, monitoring of blood glucose levels, and injecting oneĖs self with insulin sometimes three or more times a day. It requires the patient to actively participate in the treatment of his or her own illness. When the diabetic is a child however it is the parents who become responsible for carrying out the treatment. The initial diagnosis is usually very hard for parents to accept and they very often experience feelings of guilt and think they are in some way
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responsible for their childĖs illness. Many of them put all of their time and energy into taking care of their child, ignoring their own needs, and doing everything in their power to make sure the diabetic child is happy, all the while believing that this type of altruistic behavior is necessary for the childĖs health and happiness, feeling that considering themselves would just be selfish. This can also cause other children in the family to act out in an attempt to gain some of the attention that is now being focused on their sick sibling. Dealing with the behavior problems of their other children in addition to their sick child can sometimes be overwhelming. Emotional support is often needed, but for a variety of reasons it is not always attainable leaving parents to fend for themselves. In other words, the demands placed on parents of diabetic children from middle class families in the year 2000 have led many of them to believe that itĖs necessary to focus only on the well being of their sick child which can create sibling rivalry, and hesitation of the parents to leave their child in the hands of anyone other than themselves, leaving them little or no time to maintain their own psychological and emotional health; therefore these parents should be given the opportunity to anonymously express their emotions, which could be accomplished through the Internet, in addition to physically removing themselves from the situation at regular intervals.
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Diabetes Mellitus is a disorder of the endocrine system, which is responsible for the production of the hormone insulin. When the body fails to produce this hormone
Ïthere is an inadequate transfer of glucose into the cells.Ó(Watson, 1979, p. 781).
When the body is unable to utilize glucose for energy, or to convert it to glycogen or
fat for storage, the glucose builds up in the blood causing hyperglycemia. If left
untreated, a variety of complications can occur, including organ failure.
Symptoms include excessive urination, increased hunger or thirst, weight loss, and weakness or fatigue, and in children these symptoms are usually severe and occur suddenly. ÏEach year 13,000 new cases of type 1 diabetes are diagnosed in children and teenagers, making it one of the most common chronic diseases in American children.Ó (Joslin, 1999, p. 4). This amounts to 13,000 sets of parents who have to assume new roles to help care for their child after diagnosis, and although the exact cause is not known, it is believed to be a combination of environmental factors as well as genetic factors.
Treating a diabetic child involves diet modification, an exercise plan, testing his or her blood glucose levels, and giving insulin injections when needed. In children, treatment is sometimes required around the clock leaving the parents with many sleepless nights. According to Maria Peterson, the mother of five year old David who was diagnosed with diabetes two years ago, the first thing she does when she gets up in the morning is test her sonĖs blood to determine if he needs an injection, and the last thing she does at night is test him again. She shares the responsibility of staying up
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throughout the night with her husband Sean to test him and give a snack or juice when itĖs needed, but says that one of the hardest things for her to deal with is that David is unable to communicate to her exactly what he is feeling because heĖs so young, and she sometimes has to trust her intuition and deviate from the schedule to test or treat him. With DavidĖs treatment schedule often running into the night, Maria and Sean find little time for each other, as they are usually very exhausted. This kind of alteration in a husband/wife relationship is just one of the many changes that can occur in the life of a parent of a chronically ill child.
When a child is first diagnosed with diabetes there is an enormous amount of information for parents to learn, and chances are, the instruction and counseling offered by the physician will focus mainly on the medical needs and emotional well
being of the child. The emotional needs of the parents are usually overlooked. For the purposes of this paper, the term emotional needs refers to the feelings that people need to have self-confidence or peace of mind. This became evident to me as I tried to find research on this topic and found that all of the books and journal articles that I encountered focused mainly on the sick child and how to treat and protect him or her. Although many healthcare providers donĖt make a point to address the needs of the parents, it is important to note that there are exceptions. According to Dr. David Fenner M.D., of The ChildrenĖs Medical Group located in the lower Hudson Valley in New York, The physicians there make themselves available for emotional as well as
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medical support twenty four hours a day, and the groupĖs diabetic specialist often makes his home number available to diabetic patients and frequently checks on them while he is vacationing. Although emotional support services are being offered here, and by support services I mean a service in place to help comfort, and give people faith and confidence, most parents will only call when their child is experiencing medical problems. This is particularly true at night when a crisis will often arise. This was a great concern to me because the parents are directly responsible for their childĖs medical care, and if they are not coping well emotionally with their situation, the chances are their diabetic child will also have a hard time adjusting. According to Psychosocial Family Interventions In Chronic Pediatric Illness ÏPediatric patients from
highly stressed or poorly functioning families may be at risk for problems in
complying with therapeutic regimens.Ó (Christ and Flomenhaft, 1982, p8).
In order for parents to seek and maintain their psychological health they must first admit they need to do so. One of the biggest problems that some of these parents have is their belief that all that matters is the physical health of the child, and that they should be willing and able to sacrifice their own needs to do everything they can for their child. Often times when parents feel as though they canĖt handle their situation any longer, they become angry with themselves for having these feelings of frustration
and inadequacy in the first place. According to Polly Rogers, the pediatric case
coordinator and support group organizer for Vassar Brothers Hospital in Poughkeepsie,
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NY, regardless of the fact that she sees the need for support for many of these parents,
they themselves donĖt perceive they have a need, and those who do realize, view this
need for support as a sign of weakness. However it is important for them to realize
that the feelings they are experiencing are normal, and to see that trying to be the
Ïperfect ParentÓ will only create other problems in the long run.
One of the problems that can occur when parents become too focused on the health of their child is a feeling that no one other than themselves is capable of caring for their childĖs diabetes. Before they can leave the child with another person they need to be sure that this person knows how to test blood glucose, and how to respond to the test results by giving insulin injections, or juice/snack when needed. They worry that they are the only people who would be able to detect certain changes in the childĖs behavior that might indicate a problem. The fact is that if parents wonĖt allow a caregiver the opportunity to get to know their child well enough for them to be able to make these kinds of determinations, they leave themselves with no opportunity to accomplish tasks or seek any recreational activities without the child. This can place a strain on the marital relationship as well as relationships between parents and other siblings. According to Errol Nadler, a case worker and therapist who specializes in families affected by a childĖs chronic illness, when parents donĖt take care of themselves it is reflected in the behaviors and attitudes of the entire family, but when the parents are happy and flourishing, the entire family is happier, including the sick child.
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As the parents begin to shift all of their attention to the needs of the diabetic child, they sometimes lose sight of the needs of their other children. Siblings donĖt always understand the disease and often feel like their sick brother or sister is getting special attention. They canĖt understand that the needles and pumps arenĖt special to the sick child, and behavioral problems in siblings will sometimes arise as they attempt to acquire some of their parentĖs attention and affection. The relationship between the parents and the siblings can suffer greatly if parents fail to recognize the reasons for the changes in the childĖs behavior. This is just one more problem for parents to contend with as they try to keep their sick child healthy and their family whole. Parents need to include the siblings in the care of their brother or sister so they can have a better understanding of what their sibling and parents are dealing with, as they become active participants in the treatment schedule. This can also be beneficial to parents who are feeling that only they can care for their child. It allows them to see the benefits of accepting help first hand while showing their other children they trust them with the care of their sick sibling. According to the book Coping With Juvenile Diabetes, ÏThe family as a whole must take responsibility for accomplishing the tasks of diabetic management.Ó (Ahmed and Ahmed, 1985, p209).
While researching this paper I visited a physical support group for parents of chronically ill children located in a local hospital in Poughkeepsie, New York. The group meets once a month and is comprised of the pediatric case coordinator, parents of chronically ill children, and guest speakers who change from month to month. Some
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months there might be a medical specialist or spokesperson for a company that sells medical equipment, but during the session that I attended there were two pediatric caseworkers speaking about the need for parents to find time to be Ïselfish.Ó As they went around the room and asked everyone to tell them a little about themselves I saw six parents of diabetic children, one mother who has a daughter with sickle cell disease, two people researching support groups, and two mothers of children with heart defects. These two mothers came to the meeting together after having met and become friends initially through an on-line community for parents of children with heart defects. Most of the parents listened or talked about their children, but one mother left the meeting in tears after describing the recent trouble she had been having with her daughter. They all appeared to be fairly educated and all of them were from middle class families with at least one parent working. This type of emotional support might be helpful to some of the people some of the time, but that would depend on who the speaker is on a particular night, and due to an inconsistency in participation the group is in jeopardy of being closed.
Most of the parents I spoke to seem to have benefited the most from on-line support groups. They prefer the Internet to physical support groups for a variety of
reasons but the reason echoed most is the ability to reach somebody twenty four hours a day without having to get in the car and drive a half hour to share their problems with strangers face to face or to listen to the latest medical treatment. On-line they can access medical information, or to talk with other parents in chat rooms where many of
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them have formed long lasting relationships. They are not bound by a time schedule, or the speaker who might be giving them information they already have knowledge of.
I was directed to HYPERLINK "http://www.childrenwithdiabetes.com" www.childrenwithdiabetes.com, a website devoted to children with diabetes, their parents, and their siblings. It is a free site paid for by advertisers and profits from products, which included books and LandĖs End shirts, sold through the websiteĖs store. The site has received many awards from medical organizations, parent and children groups, and web organizers, and it contains the latest information from professional and educational meetings in addition to the latest research and legal issues. Not only can people learn about the latest developments in the treatment of diabetes, but they can also participate in research by participating in surveys and polls dealing with diabetes and the various treatments and equipment children might be using that have been posted in the website by various medical research companies.
In addition to learning the latest general medical developments parents can get answers to personal medical concerns by posting a question for the D. team. The team consists of diabetes health professionals and includes an endocrinologist and a diabetes nurse educator among others. The questions posted by parents, and the answers from the team are there for all to read, and they sometimes deal with emotional problems that parents are having with their teenage children. I read many of these questions, and
didnĖt find any that dealt with the emotional hardships some parents might be experiencing. The site also offers a diabetes dictionary that defines words that might
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be used when talking about diabetes, and it provides information about the disease and itĖs long-term effects. This could be beneficial to parents in helping them understand information they might have received from the D. team as well as from their childĖs physician.
Through this website parents, diabetic children, and their siblings can meet other people in the same situation from all over the world. It offers specific chat rooms that are broken down to specific age groups such as children with diabetes, teens with diabetes, siblings, parents, adults with diabetes, and their spouses, in addition to a message board that is also broken down to specific categories. To enter a chat room on this site a parent or child must give their name, and must agree to the terms of service. The chat rooms generate transcripts, and censor all inappropriate language. A person who is determined to be harassing will be banned and tracked down. A parent wanting to un-load pent up emotions would not be able to do so on this site in one of these chat rooms. Even the message board requires the user to enter their name and password leaving no chance for anonymity.
The children on this website are given a forum in which to express their feelings. ÏKidĖs VoicesÓ shows photographs of diabetic children and teens and tells the story of each child pictured. Some of the children, particularly the teenagers, have written about themselves, and there is usually an e-mail address, phone number, mailing address, or all of the above included for each child so other children visiting the site can contact them. There is also an Art corner where children, parents, and others can
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express their feelings and experiences through poetry or drawings. Here, one father created a comic action hero called Captain Courage for his son after he was diagnosed with diabetes, a seventeen-year-old diabetic girl posted a poem about her illness, and another girl wrote a short story about life with diabetes. There is also poetry written by a nurse, and an educator in addition to a drawing by a five-year-old girl about getting the flu with diabetes. This is a wonderful forum for the children to express themselves, and like most everything else I encountered, its main focus is the well being of the children, including the expressions of the parents.
The children with diabetes website has many obvious benefits over a physical support group, but due to the wide use by children, and the monitored chat rooms some parents would feel the need to hold back from expressing their true emotions. In addition, most of them donĖt want other people to know that they might be experiencing feelings of frustration or anger, or feeling unable to cope with their situation. They would much rather have others believe they are the Ïperfect parent.Ó For parents like this a website for parents only could offer an escape from the demands of diabetes. The site should be free to users, being paid for by sponsors through banners, and affiliate programs. In a site like this there should be no shortage of
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banners that offer stress-reducing products. Parents could log in using a nickname and a password for anonymity, and not have to be concerned with who else might be there.
By a click of the mouse parents could view video that would take them for a walk in the park, or the woods, or maybe take a boat tour on the river. For those who are looking for a little more excitement, perhaps they could skydive through a video taken from a diverĖs camera, or go white water rafting. These videos would need to be complete with sound effects for authenticity, and there should be interactive video in addition. Some might find feeding the pigeons at the park, or the animals at the zoo relaxing, but for those who need to expel their frustrations a pair of boxing gloves and a punching bag clown might help them vent.
There would have to be a message board where parents could voice their frustrations through words or art while listening to a song they pick from a jukebox if they want to hear one. With the assurance of their anonymity parents would be free to vocalize whatever they might be feeling, anger, sadness, guilt, depression, or even happiness, through stories, poetry, drawings, or by simply shouting, and with sound being a part of the site, a piano could be used by clicking on the keys for expression through music. There should be answers to frequently asked questions, in addition to a message board where parents could send questions to, and receive answers from, a psychologist, and a recreational activity center could advertise recreational packages as ideas for parents outside of the home.
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Although a website like this could be helpful to parents of diabetic children, it canĖt be considered the sole solution to their problems. While being on the Internet gives parents the opportunity to receive support from the comfort of their own home, the problems of diabetes are never out of sight. Their sick child, his or her siblings, medication, needles, and other medical equipment are right in the next room. Therefore in addition to a ÏparentĖs onlyÓ web site, parents need to remove themselves from the situation at regular intervals. When I say they need to Ïremove themselves from the situation,Ó I am talking about parents leaving the house and getting involved in activities that have nothing at all to do with diabetes. It could be going out to dinner, or a movie, hiking, or socializing with friends, and it does not include attending a support group meeting for parents of diabetic children. This would force parents to find a caregiver they trust to take care of their diabetic child, and teach him or her what they need to know about caring for diabetes. The caregiver could also be a sibling if he or she were old enough to handle the responsibility. If this child has been given enough responsibility in the care of his or her sibling there shouldnĖt be too much to learn.
The demands placed on parents of diabetic children should never be overlooked as they can create great problems for these parents and their families to overcome. Health care providers need to address the hurdles that parents will encounter to assist them in understanding the importance of maintaining their psychological health. This
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understanding could make the difference in the emotional health and happiness of an entire family.
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Watson, J. (1979) . Medical ŌSurgical Nursing And Related Physiology. W.B. Saunders Company.
Christ, A., Flomenhaft, K. (1980) Psychosocial Family Interventions In Chronic Pediatric Illness. Plenum Press.
Ahmed, Paul I., Ahmed, Nancy. (1985) . Coping With Juvenile Diabetes. Charles C. Thomas .
Davis, Hilton . (1993) . Counseling Parents Of Children With Chronic Illness Or Disability. British Psychological Society.
Genetics And Diabetes: WhatĖs Your Risk?. (1999, Fall) . Joslin, pp. 3-8
Fenner, David, MD. (2000, March) . [Interview with Dr. David Fenner of The ChildrenĖs Medical Group in Poughkeepsie, NY].
Nadler, Errol. (2000, March) . [Interview With Errol Nadler, an Ulster County Case Worker in Kingston, NY].
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Peterson, Maria (2000, March) . [Interview with Maria Peterson, the mother of a diabetic child in Highland, NY].
Rogers, Polly. (2000,March) . [Interview with Polly Rogers Vassar Brothers Hospital Pediatric Case Coordinator in Poughkeepsie, NY].
HYPERLINK "http://www.childrenwithdiabetes.com" www.childrenwithdiabetes.com, 2000