Coping Emotionally
by Annmarie Lobdell
Abstract
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 wonÌt be able to manage the treatment
schedule. They often feel responsible for their childÌs 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.
Coping Emotionally 3
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 donÌt spend very much time worrying about diet and exercise,
or the schedules by which they are bound, so you can imagine oneÌs 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 individualÌs 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 oneÌs 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
Coping Emotionally 4
responsible for their childÌs 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 childÌs 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 itÌs 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.
Coping Emotionally 5
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 sonÌs 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
Coping Emotionally 6
throughout the night with her husband Sean to test him and give a snack or
juice when itÌs 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 heÌs so young, and she sometimes has to trust her intuition
and deviate from the schedule to test or treat him. With DavidÌs 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
donÌt 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
ChildrenÌs Medical Group located in the lower Hudson Valley in New York, The
physicians there make themselves available for emotional as well as
Coping Emotionally 7
medical support twenty four hours a day, and the groupÌs 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 childÌs 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 canÌt 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,
Coping Emotionally 8
NY, regardless of the fact that she sees the need for support for many of
these parents,
they themselves donÌt 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 childÌs 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 childÌs behavior that might indicate
a problem. The fact is that if parents wonÌt 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 childÌs chronic illness, when parents
donÌt 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.
Coping Emotionally 9
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
donÌt always understand the disease and often feel like their sick brother
or sister is getting special attention. They canÌt understand that the needles
and pumps arenÌt special to the sick child, and behavioral problems in siblings
will sometimes arise as they attempt to acquire some of their parentÌs 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 childÌs
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
Coping Emotionally 10
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
Coping Emotionally 11
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 LandÌs End shirts, sold
through the websiteÌs 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
didnÌt 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
Coping Emotionally 12
be used when talking about diabetes, and it provides information about the
disease and itÌs 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 childÌs 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.
ÏKidÌs 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
Coping Emotionally 13
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 donÌt 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
Coping Emotionally 14
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 diverÌs 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.
Coping Emotionally 15
Although a website like this could be helpful to parents of diabetic children,
it canÌt 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 ÏparentÌs 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 shouldnÌt 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
Coping Emotionally 16
understanding could make the difference in the emotional health and happiness
of an entire family.
Coping Emotionally 17
References
Watson, J. (1979) . Medical ÒSurgical 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: WhatÌs Your Risk?. (1999, Fall) . Joslin, pp. 3-8
Fenner, David, MD. (2000, March) . [Interview with Dr. David Fenner of The
ChildrenÌs Medical Group in Poughkeepsie, NY].
Nadler, Errol. (2000, March) . [Interview With Errol Nadler, an Ulster County
Case Worker in Kingston, NY].
Coping Emotionally 18
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