TOPIC:PsychosocialAdjustmentTEACHING OBJECTIVES: 1. Describe extra stresses which a

person/family may experienceas a result of diabetes.

2. Provide healthy copingstrategies for individual/familystress.

LEARNING OBJECTIVES:Learners (parents, child, relative orself) will be able to:1. Identify the stresses experienced

by the person/family withdiabetes.

2. Describe a healthy copingstrategy for an identified stress.

Chapter 17

FamilyConcerns

Rita Temple-Trujillo, LCSW, CDE H. Peter Chase, MD

WORKING AS A FAMILYThe challenges a person or a family may have following the

initial diagnosis of diabetes include more demands on theirtime, money and energy. This is due to the daily routine of thediabetes management and the regular clinic visits. Parents andfamilies must decide how to fairly share these newresponsibilities. We encourage both the mother and father toshare the responsibility for the diabetes care of their child. Thisshould include giving the insulin injections. It is important forthe parents to support one another. Both parents should alsotry to attend all clinic visits.

Diabetes affects the entire family. The family must worktogether to solve problems and manage the diabetes. Researchhas shown that children and individuals do best with strongfamily support and involvement.

SINGLE-PARENT/BLENDED FAMILIES

Approximately one-fourth of children in the U.S. now livein single-parent families. For children who live in twohouseholds, it is important to share vital diabetes informationbetween the households.

This information includes:

4 blood sugar levels

4 recent low blood sugars

185

186 Chapter 17 Family Concerns

4 insulin dosages and recent changes

4 food intake

4 exercise

4 illnesses

4 other items/events which may effectdiabetes management

GOOD COMMUNICATION ANDCOOPERATION ARE ESSENTIAL

Some suggestions for two households are:

4 diabetes supplies can be neatly packed in acarrying case to go with the child betweenhouseholds

4 keep a vial of glucagon and some foil-wrapped urine ketone strips permanently ineach household

4 keep a current log book with insulin dosesand blood sugars to ensure consistency fromhousehold to household

4 remember that the care of the child is themost important thing. Try to put individualdifferences and conflicts aside and focus onhelping the child make a healthy adjustmentto their diabetes.

LEADING A NORMAL LIFEDiabetes care has changed tremendously

over the past 20 years. New insulins, bloodglucose meters and added flexibility with mealplanning and insulin dosing make it easier forchildren or adults to live normal, healthy lives.It is important for children or adults withdiabetes to lead normal active lives. Thoughthere may be many new worries, it is possible tonormalize ones life with diabetes.

For children, leading a normal life meansparticipating in age appropriate activities withtheir family and peers. There is no question;diabetes can make fun things like sleepovers andbirthday parties a little more stressful. But witha little flexibility and creativity, children withdiabetes are able to participate in these activitiesjust like their siblings or friends. When in

doubt about allowing your child to take part inan activity, ask yourself, Would I let my childparticipate if he/she did not have diabetes? Ifthe answer is yes, it should not changebecause of the diabetes. If you are uncertain,contact your care provider so they can help youcreate a plan for the activity.

The issue of discipline and diabetes is alsoan important aspect of leading a normal life.Whether your child has diabetes or not, therewill be times when he/she will test limits andact up. Children with diabetes need limits setlike any other child. Sometimes it is hard to tellif your child is being difficult because he/she isacting like a teenager (or a toddler) orbecause their blood sugar is low. When indoubt, check the blood sugar and then dealappropriately with the behavior.

Care providers, parents and children need tostrike a balance between good diabetes controland an emotionally healthy lifestyle. It isimportant for all of us to work as a team so thatkids with diabetes can grow and developphysically and emotionally.

CONCERNS OF BROTHERSAND SISTERS

When a child first develops diabetes, it is acrisis for the whole family. Often brothers andsisters feel left out. This is because so muchattention is given to the child with diabetes.

Some common concerns may be:

4 trouble understanding what diabetes is4 fearing that their brother or sister will die4 thinking they caused the diabetes by having

an angry thought against the child withdiabetes

4 fearing that they will be the next to bediagnosed

Important things for the brothers and/or sisters:

4 to be a part of the beginning education4 young children will feel less frightened if

they can visit the hospital or clinic

Chapter 17 Family Concerns 187

4 asking the children what they think andunderstand, even if you think everything hasbeen thoroughly explained. One child usedthe word diabetes very literally. Whenasked why he was so very sad, he said hethought diabetes meant die of betes.

4 discipline should not be different for theirbrother or sister with diabetes than it is forthem

4 all children in a family should be treated in asimilar way. One sister said she eats a candybar in front of her brother with diabetes whenhe gets away with something. She said,Thats how I get even with him.

4 it is important to plan individual time andspecial activities with all children in a family

Some children with diabetes have theopportunity for group activities such as diabetescamp and ski trips. Many brothers and sisterssay, I wish I had diabetes so I could do specialthings, too. A family can prevent future stressif siblings understand that these activities needspecial medical care. Make sure the siblingwithout diabetes gets their special time too.

FAMILY STRESSThe diagnosis of any serious condition,

especially in children and teens, is stressful forthe whole family (including the extendedfamily). Getting through the initial shock andgrief that comes with the diagnosis is difficult.This can be especially hard if families have hadmedical or other serious problems to manage.Parents usually have different coping stylesaround grief. It is normal that some familymembers find they are less patient or evenirritable with one another for a period after thediagnosis. These feelings usually resolve aseveryone adjusts and begins to feel morecomfortable managing the diabetes.

When grief or conflict does not get better,this can obviously be stressful for parents andfor the whole family.

The crisis of diagnosis can bring up many fearsand feelings, and:

4 an individual can become quite anxious ordepressed

4 parents or significant others may feel thestrain on the relationship with one another.It is particularly important to seek help totry to be understanding and to get thesupport that is needed.

4 children and teens can sense tensionbetween parents and may feel responsiblefor something they cant help

Talking with the psychosocial member ofyour diabetes team can be helpful in sorting outthese problems.

PROMOTING A HEALTHY DIET

When a child is diagnosed with diabetes, oneof the first things that parents often wonderabout is how their diet will change. Manypeople still believe sugar is what causes diabetesand think they will need to have a sugarrestricted diet for their child with diabetes.These days, we understand that eating a healthydiet is more important than ever for everyone.Americans already eat more added sugar than isrecommended and this contributes to too muchweight gain. Diabetes education teaches familiesabout carbohydrates (sugars and starches) andhow they affect blood sugars. It is importantthat everyone in the family try to support oneanother by selecting healthy foods and snacks.

If possible, foods in the home should not berestricted from the child with diabetes. If toomany high carbohydrate, sweet foods anddrinks are available in the home, they are hardfor anyone to resist, let alone the child withdiabetes. Too much of this junk food is agrowing health problem in our country. Whenparents can, it is important to look at theimportance of how everyone eats in the familyand how they can make healthy changes andlimit the amount of junk food available.

A healthy diet includes foods from all foodgroups in appropriate amounts. It is permissibleto include some sweets as a part of a healthy diet.

188 Chapter 17 Family Concerns

Fresh fruit and frozen yogurt are good examplesof treats that can provide both nutrition andgreat taste! With or without diabetes, oneshould not consume sweets and special treats inexcess! When diabetes is part of the picture, theappropriate insulin dose must be given/taken forcarbohydrates (including sweets) that areconsumed. Trying to avoid all sweet foods maycreate undue focus on food restriction. Healthysweet treats may be allowed as a part of a healthyfamily diet. When in doubt, please consult withthe diabetes dietitian.

DEALING WITH STRESSAND EXCITEMENT

Emotions and stress may have a big effecton diabetes control. Many different life eventscan cause stress such as:

4 family problems4 arguments with parents or between parents4 parent separation or divorce4 death of a relative, friend or pet4 a move to a new home or schoolOther kinds of stressful situations include specialevents such as:

4 athletic competitions 4 school exams4 holidays like birthdays, Christmas or

Hanukkah

Most people will have high sugars followingstress, though some children can have lowsugars because of extra activity. It is importantto think ahead and reduce the insulin dose orgive extra food. Monitor blood sugars at leastfour times during the day to prevent low bloodsugars on days of excitement.

The diagram in Chapter 14 on Diabetes andBlood Sugar Control shows how the insulindose, oral medicine dose, diet, exercise andstress must be in balance for the best sugarcontrol. Sometimes, despite our best efforts,blood sugars just dont behave the way weexpect! But it helps to keep working at it.

NEEDLE ANXIETY (FEAR OF SHOTS)

It is now known that needle anxiety of somedegree occurs in almost everyone. Childrenand adults have worries about shots. In aperson with diabetes, we used to assume thatthis anxiety would just go away because theyhad to have shots every day. We now know thatneedle anxiety, if strong, doesnt just goaway. There are some things that can belearned to reduce this anxiety if we identify it isa problem.

First of all, anxiety about shots is normal.When we fear something, we get tense and tendto hold our breath. Our head is filled withthoughts about pain. Parents who have to givethese shots can be just as needle anxious as theirchild. Remember, the syringes that are nowused for insulin are much smaller and haveshorter needles so that shots are much morecomfortable these days. With a few easytechniques, shots can be less stressful. Thediabetes educators in our clinic always haveparents or significant others practice injectionson each other using saline solution. Thepractice nearly always reassures them that givinginsulin injections to their child is not the traumathey imagine.

Tensing can make shots hurt. So take acouple of deep relaxing breaths (breathe inthrough the nose and breathe slowly out themouth) and try to imagine yourself made of Jell-O. By relaxing the tension, shots can bedone more comfortably. Sometimes a littledistraction can help refocus the mind from fearto something else. Watching cartoons orlistening to some favorite music with headphonescan help the mind from thinking too muchabout the shots and aids relaxation.

Sometimes a person with diabetes doesntget over their stress about shots. A fewsymptoms that might indicate this is going on are:

4 persistently high HbA1c4 a child wanting to do all their own shots

particularly when they want to do the shot

Chapter 17 Family Concerns 189

in a room by themselves (some shots willprobably be missed)

4 lack of site rotation (hypertrophy orswelling of the injection site)

4 missed insulin shots4 excuses for wanting to put off the shot

(stalling)

4 parental fear or worry about injections orblood draws

The psychosocial member of the team canbe very helpful to children or parents withsorting out this problem. Treatment caninclude behavioral techniques and purposefuldistraction. The latter includes TV, music, toys,blowing bubbles and books. Sometimesinjection devices help the problem (Inject-Ease,Chapter 9) though they do not cure it.Behavioral techniques include learning to relax,reward programs, systematic desensitization andbiofeedback. As fear of shots, blood or injurydecreases, the HbA1c usually improves.

PSYCHOLOGICALDISORDERS

Families need to be aware of two types ofpsychological disorders that have beendescribed in people with diabetes. The first isdepression and the second is eating disorders.

Depression: Depression (defined inDefinitions at the back of this chapter), is onemood disorder that may be more common inolder teens and adults with diabetes than in thegeneral population.

Symptoms include:

4 change in sleep habits4 change in appetite4 decline in school or work performance 4 irritability or sadness4 isolation4 lack of pleasure in things and decreased

energy

If you see such changes, it is wise to seekprofessional help from your diabetes team or amental health provider. Be aware thatdepression can affect diabetes care in thefollowing ways:

4 poor blood sugar control (high HbA1c) dueto not following treatment plans

4 irritability about testing blood sugars orgetting shots

4 decreased energy with higher blood sugars4 not caring about daily diabetes tasks

If left untreated, depression can lead to longterm poor control and complications.Treatment of depression and other mooddisorders can be very effective these days with acombination of counseling and medications(usually antidepressants). Please ask yourprimary care physician or diabetes team forrecommendations and referrals.

Eating disorders: The most common types ofeating disorders are explained below:

4 Anorexia usually involves limiting foodintake and often engaging in excessiveexercise. The goal of these is to lose weightand maintain unrealistic and unhealthyweight loss. This can become lifethreatening.

4 Bulimia is defined by excessive intake offood and self-induced vomiting, use oflaxatives and/or excessive exercise. This is avery risky form of weight loss or weightmaintenance.

Both of these conditions can result in lowblood sugars. Many people are not aware of anadditional form of eating disorder specific topeople who have diabetes.

4 Insulin omission. Some people miss shots orunderdose their insulin to achieve weightcontrol. This is a particularly dangerousform of eating disorder because it leads tochronic poor control and can result in DKA(diabetes ketoacidosis). The effects ofmissing insulin doses include the following:

190 Chapter 17 Family Concerns

l The calories consumed go out in theurine rather than into the body. Bloodsugars are very high.

l If left untreated, chronic complications(Chapter 22) are more likely.

l Blood sugars sometimes become veryerratic. This may mean the person isalternating between restricting food(with low sugars) or binging (with highsugars).

4 Binge eating is the fourth type of eatingdisorder. People who binge eat often skipmeals during the day and eat excessively atnight. It is most frequently associated withtype 2 diabetes.

Any of these disorders can be verydangerous for a person with diabetes. Theyrequire immediate psychological care from aprofessional with expertise in this area and whounderstands diabetes. A healthy body image isimportant and a healthy body is essential.

CHANGING BEHAVIORSometimes children with diabetes have

difficulty with their insulin injections, blood sugartests at home, the suggested diet, therecommended exercise or other parts of diabetesmanagement. These problems can beopportunities to assess what is bothering a childor teenager. At these times it may be very helpfulto meet with the clinical social worker orpsychologist who specializes in working withfamilies. They can help evaluate problems andsuggest ways to effect change. Behavioral changetakes time, patience and usually requires helpfrom the whole family. A few visits can often bevery helpful to the patient and the family.

SCHOOL/WORKATTENDANCE

People with diabetes generally shouldnthave more school/work absences for illness.They may have to miss school/workoccasionally for routine clinic visits. If a lot ofschool/work is being missed for diabetesrelated reasons, it is very important to reviewthis with your medical team. Working together,the underlying cause can be found. With goodblood sugar control, there is no reason whypeople should not participate fully in activitiesof their choice. However, they may have otherconcerns that contribute to missingschool/work. These concerns should beexamined and addressed as soon as possible.

If school/work is missed for a period oftime due to illness or hospitalization, the personmay be very worried about returning. It is notuncommon for the diabetes to remain in poorcontrol when a person is worried aboutunfinished work, exams, fellow students,teachers, co-workers or other problems.

If a significant amount of school/work has beenmissed the following can be helpful:

4 Encouraging the person to return toschool/work as soon as possible.

4 The family may wish to ask members of thediabetes team to help coordinate matterswith the school/work. Sometimes a personmay fear how peers or co-workers will treathim/her.

4 Talking with the school counselor or teachercan help people of school age. They canassist in arranging a schedule and homeworkafter a long absence.

4 Arranging for a nurse educator or parent totalk to the class about diabetes can be veryhelpful for a student. It allows for thedevelopment of good peer support andunderstanding.

Chapter 17 Family Concerns 191

DEFINITIONSClinical Social Worker: A person with aMasters degree in social work trained to helpindividuals or families with stress, emotional orbehavioral problems, as well as problems withresources.

Psychologist: A person with a doctoratedegree (PhD or PsyD) trained in helping peoplewith behavior, stress or feelings that are causingproblems or discomfort.

Psychiatrist: A physician who specializes inpsychiatric medicine and may be helpful indiagnosing and prescribing medications formoods disorders and attentional problems.

Stress: Problems or events that make peoplefeel worried, afraid, excited, upset or scared.

Depression: A mood state in which one mayshow sadness, a lack of energy, inability to doones normal work or activity or self-depreciation. They may show a lack of interestin enjoyable activities, irritability or withdrawalfrom friends and family.

Eating disorder: The most common types ofeating disorders are:

1. Anorexia: People with a distorted bodyimage who limit their food intake and oftenexercise in excess to remain very thin.

2. Bulimia: People who eat excessively attimes and then vomit (or take medicines such aslaxatives) in order to not gain weight.

3. Binge-eating: People who intermittentlyeat excessively but do not vomit. They maygain excessive weight and develop type 2diabetes.

4. Insulin omission: In a person withdiabetes, skipping insulin shots or loweringdoses to maintain or avoid weight gain. This isan extremely dangerous form of weight lossbecause of the risk of ketoacidosis.

QUESTIONS AND ANSWERSFROM NEWSNOTES

What are the occupationalrestrictions for a person withdiabetes?

Restrictions are based on the idea thatall people with diabetes are at agreater risk for hypoglycemia. There

are studies which show hypoglycemia doesresult in an increased risk for accidents. In onestudy, approximately 10 percent of the accidentreports, in which the accident was due to amedical condition other than alcoholism, weredue to an insulin reaction.

My own opinion is that restrictions shouldnot be generic and should be individualized.Some people test their blood sugars frequentlyand are careful to eat or make sure they are notlow before driving a car. Others are less careful.Everyone pays the price from the latter group.

Currently, legal restrictions include workingin the military, commercial truck driving andflying a passenger plane. Some state and localgovernments may also deny employment in thepolice or fire fighting forces, but this ischanging. Most physicians also recommendthat people who have frequent low blood sugarsdo not work at heights, operate heavyequipment or handle toxic substances. Workingrotating shifts can also result in more difficultywith blood sugar control. Generally, if therotations are on a monthly or greater basis, it ispossible to alter the insulin dosage to cope.The use of the insulin pump or Lantus andshort-acting insulin can be very effective inproviding shift workers the ability to maintaingood blood sugar control.

QA

192 Chapter 17 Family Concerns

Are psychological problems more orless common in children andadolescents with diabetes compared

with people without diabetes?

It is a common belief that the presenceof any chronic illness increases thelikelihood of psychological problems.

The presence of pimples or blemishes that makethe adolescent feel different from peers can bedevastating. We ask youths with diabetes to eatdifferently than their peers (and not to eatfoods generally considered the most tempting),to give two or more insulin shots and do fouror more finger pokes for blood sugar every dayof their lives. With this, one might expect somepsychological problems!

Surprisingly, this is not the case. In theyears the Barbara Davis Center has been open,we have had far fewer serious psychologicalproblems (including drug addiction andsuicide) than in the general population. Why isthis? It is likely related to several factors. Oneis preventive counseling has been availablefrom the day the Center opened. Thepsychosocial member of the team (usually theclinical social worker) can help to identifyproblems early and offer intervention or referralfor treatment. When families come for theirthree-month clinic visits, the staff is alert forpeople who might need some extra help. Ioften ask teenagers to grade their current stresslevel from one to 10. An answer of five (orabove) usually means the person is asking forhelp and a visit to the psychologist or clinicalsocial worker might be helpful. I stronglybelieve the regular clinic visits and thepreventive counseling have been majorreasons for the low incidence of majorpsychological problems.

Diabetes often results in the entire familyfocusing on the holistic health of the individualand family, often in ways that might nototherwise have occurred. These often includeeating better, getting more exercise and notusing tobacco. Factors such as these may alsorelate to the good mental health of the peopleseen at our Center.

An added factor in the low incidence ofserious problems may be the schedule andseriousness of diabetes care. A number of youthshave written in their college applications thathaving diabetes required them to grow upsooner to learn at an earlier age when theycould have fun or when they had to be serious.Good diabetes control and the use of illegaldrugs and alcohol do not mix. With themonitoring of diabetes control every threemonths, any change from good control is quicklydetected. Preventive counseling can then bedone before the problem becomes too serious.

One parent saw some wonderful, older kidswho were in the clinic when her child wasdiagnosed. Many were in getting check-upsduring their winter break from college. Sheasked how it could be that these kids seemed tobe so much more successful than average. Shewas told, Its the extra hugs! All in all, kidswith diabetes are special. I have felt veryprivileged to work with each of them and theirfamilies throughout the years.

Q

A