Aaron E. Carroll, MD, MS

David G. Marrero, PhD

From the Children’s Health Services Research, IndianaUniversity School of Medicine, and the Regenstrief Institute forHealth Care, Indianapolis, Indiana (Dr Carroll), and the DiabetesPrevention and Control Center, Indiana University School ofMedicine, and the Regenstrief Institute for Health Care,Indianapolis, Indiana (Dr Marrero).

Correspondence to Aaron E. Carroll, MD, MS, Riley Research330, 699 West Drive, Indianapolis, IN 46074(aaecarro@iupui.edu).

Acknowledgment: We are grateful to the adolescents who werewilling to share with us their experiences of living with diabetesso that we can better understand and provide care for them.We also want to thank Terri Matousek of Matousek andAssociates for conducting all of the focus groups; HeatherHerdman, RN, PhD, for her assistance with data analysis; andMelinda Swenson, RN, PhD, for her help in the design of thestudy. This research was funded by grants from the NationalInstitutes of Health to A.E.C. (1 K23 DK067879-01) and fromClarian Health Partners to A.E.C. (VFR-190).

DOI: 10.1177/0145721706286893

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Carroll and Marrero

The Role of Significant Others in Adolescent DiabetesA Qualitative Study

Purpose

The purpose of this study was to explore perceptions of

how diabetes influences adolescents’ perceptions of

quality of life in general and their relationships with par-

ents, peers, school, and their physician.

Methods

The authors recruited adolescents between the ages of 13

and 18 years living with type 1 diabetes mellitus from a

midwestern metropolitan area. Qualitative analysis of

the focus group data followed a set procedure: (1) audio

review of the tapes, (2) reading through the transcrip-

tions, (3) discussions among investigators, (4) determi-

nation of conceptual themes, and (5) assignment of

relevant responses to appropriate thematic constructs.

Results

The 5 focus groups involved 31 adolescents. From the

discussions that occurred within the 5 focus groups, the

following themes were identified: personal perceptions

of living with diabetes (which included living with dia-

betes, testing and injections, and blood sugar fluctua-

tions), impact on relationships (which included

relationships with their parents, their friends/peers, and

their physician), and impact on school.

Conclusions

Diabetes in adolescence is fraught with equal and oppo-

site demands. One consequence of this internal push/pull

is that adolescents become more afraid to do appropriate

developmental activities. This can have a significant

The Diabetes EDUCATOR

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Volume 32, Number 2, March/April 2006

impact on their normal progression to independence and

adulthood, ironically at odds with the increased respon-

sibility they have had to assume throughout their lives to

care for their disease. Much of the clinical time and

research still focuses on the devices of diabetes care:

testing and treatment. While these are important tools in

improving the outcomes of people with diabetes, they

will have little impact on the adolescent until the devel-

opmental consequences of diabetes on their lives are

simultaneously addressed.

Dealing with diabetes is perhaps most difficult

and challenging for children and adoles-

cents.1 By its very nature, diabetes requires a

higher degree of behavioral regulation than

is normal for similar aged children.2 Adolescence is a

particularly difficult period.3-6 Research has shown that

adolescent patients with diabetes are susceptible to a

number of issues that make management troublesome.

Children with diabetes miss more school than their

healthy siblings and are more likely to have behavioral

problems.7 Parental involvement can lead to better con-

trol of disease, but older children are less likely to have

close parental involvement.8,9 Moreover, the presence of

the disease can exert more conflicted family dynamics

and stressful adolescent-parent interaction.4,5 More fre-

quent assessment of blood glucose levels is a predictor

of glycemic control; unfortunately, adolescents moni-

tor their blood sugars less frequently than do younger

children.8

Normal social development during adolescence

requires that a young person begins to reject parental

control as they strive to build an integrated self-identity.

This involves some rejection of parental and societal

controls, with greater attention to peers as a source of

rules for “normative” behavior and identity.2 The pres-

ence of diabetes, however, can significantly jeopardize

this process, particularly as parents, concerned over the

many negative consequences of poor diabetes manage-

ment, are reluctant to relinquish control of adolescent

behavior.6,10-12 In addition, many nondiabetic peers can pro-

vide influences that, although normal and age-appropriate,

may conflict with good diabetes care practices.13,14 Risk-

seeking behavior in adolescence can only complicate

this situation.13

Unfortunately, little is known about the dynamics of

adolescents and their family and environment, particu-

larly from the perspective of the adolescent with dia-

betes.15 Because the researchers wanted to observe

attitudes and reported behavior to construct theory, a

qualitative research method was decided on. A series of

focus groups with adolescents with diabetes was con-

ducted to explore their perceptions of how having dia-

betes influences their perceptions of quality of life in

general and their relationships with the 4 main social

influences that contribute to both their social develop-

ment and their therapeutic lives: parents, peers, school,

and their physician.

Methods

Research Design

A qualitative design was employed in which focus

groups were used to elicit data from adolescents living

with type 1 diabetes, with emphasis on how the disease

affects relationships with parents, peers, physicians, and

school. A focus group methodology was chosen because

it is an excellent means to gather opinions and beliefs in

a cost-effective manner with acceptable validity.16 The

focus groups were conducted by a professional facilita-

tor experienced in working with health care populations

(see the acknowledgments). A prepared set of open-

ended qualitative questions were used to solicit respons-

es during a 2-hour session (eg, “What is it like to be a

teenager with diabetes and how does it affect your life?

What is it like dealing with parents and diabetes?”).

Permission to tape record the sessions was asked and

received to allow for later transcription. All subjects vol-

untarily responded within the groups or when called on

to answer questions.

Sample

Adolescent patients with type 1 diabetes (aged 13 to

18 years) were recruited from physicians’ offices in a

midwestern metropolitan area. A total of 5 focus groups

were conducted with 18 males and 13 females. Both sub-

jects and parents gave informed consent and were paid

$40 to participate. This study was approved by the

Institutional Review Board of Indiana University.

Qualitative Analysis

Qualitative analysis of the focus group data followed

a set procedure: (1) audio review of the tapes, (2) read-

ing through the transcriptions, (3) discussions among

investigators regarding key elements of subjects’ percep-

tions of living with diabetes and how it affects relation-

ships, (4) determination of conceptual themes, and (5)

assignment of relevant responses to thematic constructs.

The study team was composed of a pediatric physician,

a social ecologist, and a nurse practitioner with medical

sociology training. All 3 members have experience with

qualitative methods. In particular, the social ecologist

(D.G.M.) is experienced with focus group methods and

has published studies using similar quantitative methods

to those reported here. All 3 are experienced with the

target population through both care and previous

research efforts. All 3 members, along with another

group consisting of 8 clinicians and 2 experienced qual-

itative researchers, contributed to the development of the

group questions used by the facilitator (see the acknowl-

edgments). The pediatrician was also present during the

sessions, contributed additional questions when appro-

priate, and took detailed notes. Transcription was done

by trained personnel within a week or two of each focus

group, and audiotapes were reviewed within 1 week of

session completion.

Results

The 5 focus groups involved 31 adolescents. The par-

ticipants were between 13 and 18 years (mean = 14.9

years), with a duration of diabetes between 6 months and

14 years (mean = 6.6 years). Demographic data on the

focus group participants is presented in Table 1. Groups

were divided according to age: 13 to 14, 15 to 16, and 17

to 18 years.

Three major themes that emerged from the review of

the data were personal perceptions of life living with dia-

betes, impact on parental and peer relationships, and

impact on school. The quotes presented were chosen

based on their representativeness.

Personal Perceptions ofLiving With Diabetes

Interestingly, the overall perception of living with

diabetes was less negative than one might expect. In gen-

eral, most focus group participants discussed diabetes

more in terms of the daily hassles associated with treat-

ment rather than in a more conceptual perspective of

having something awful or difficult with which they

were forced to live. However, there was a general sense

of diabetes exerting control over their lives and requiring

them to take more responsibility than their “normal”

peers. For example, one of the male participants in the

15- to 16-year-old group stated,

I think it is just that you don’t have any control.

Diabetes always has a hold on you. You don’t take your

medicine because you don’t think it will hurt you—

then you get sick. If I didn’t take my shots or do my

testing the whole day, then it could kill me. Another

Role of Significant Others in Adolescent Diabetes

245

Carroll and Marrero

Table 1

Demographic Data on Focus Group Participants

Adolescents (N = 31) Percentage

Gender

Female 13 42

Male 18 58

Age, y

13-14 14 45

15-16 11 35

17-18 6 20

Ethnicity

White 28 90

African American 3 10

Insulin administration

Shots 16 52

Pump 15 48

Duration of diabetes, y

0-3 8 26

3-6 9 29

6-9 5 16

10 or more 9 29

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Volume 32, Number 2, March/April 2006

example would be not taking my Humulin® one time or

not counting this one time.

Members of the older adolescent groups noted that

they are required to “watch what I eat . . . do my bolus-

es . . . do my equation . . . exercise . . . make sure I carry

sugar with me just in case I go low.” Many subjects

believed that living with diabetes had forced them to

“grow up faster” and that they see themselves as more

mature than some in their peer group. The following

statements from 2 of the female participants reflect this

theme:

It is like any other disease, no matter what, it is going

to have an impact on your life. At least when I got it

[diabetes] I came to a realization about things. I look at

things a lot differently and I know that I have matured.

It really has created who I am.

I pay attention to it. But, after a while it is like when

you are driving. You don’t really concentrate on the

driving because it becomes natural after a while. We

don’t have to concentrate on it [diabetes] anymore.

Those in the youngest group of participants (13-14

years) tended to describe having diabetes more in terms

of it being “a pain,” “stressful,” and “annoying” than did

the older groups. Most of the older teens (15-18 years)

seemed to accept their condition without a great deal of

anger or frustration. Statements such as, “It’s so easy. It

is a part of your life,” and “I am just used to it . . . it is

all pretty much normal to me,” are indicative of this

acceptance. Indeed, many of the participants stated that

diabetes is something to which they have grown accus-

tomed: “It is who you are. You make it your life. You

work around it.” Other participants indicated that with

the exception of testing and injections, diabetes does not

affect them in a distinct or drastic way. Some of the par-

ticipants noted that diabetes is time-consuming because

of the need to calculate insulin, test blood glucose, track

what foods are being eaten, and so forth. Frequent physi-

cian’s office visits and research participation also take up

more time for them than for their nondiabetic peers.

Others spoke of the need to be organized and responsible

prior to going anywhere, which makes it more difficult

to be spontaneous. One of the male participants

described it in this manner:

Well, you have to be more responsible. You have to

remember your insulin, tester, sugar foods and to count

everything you eat. You can’t just eat whatever and

whenever you want, which is something I did before I

was diagnosed.

Several of the participants indicated that greater expe-

rience with self-management makes living with diabetes

less stressful. They became more aware of their bodies

and how they respond to high and low blood glucose and

are better able to anticipate things. For example, one of

the females in the 15- to 16-year-old group stated,

“When I was newly diagnosed I was scared to death to

go low. Then I went low, and I can identify it now.”

Many of the participants identified that they could

“guess” their blood glucose levels and were able to stop

themselves from going too low or too high because they

were aware of their own warning signs. This seemed to

make the experience of living with diabetes less scary

and more controllable. However, the teens acknowl-

edged that one of the hardest things to accept is that there

simply is no cure for the disease.

Many of the participants noted that diabetes exerted

some negative influences, particularly regarding partici-

pation in sports, driving, and potentially diminished

career choices. Some, but not all, of the teens felt that

their ability to participate competitively in sports had

been hampered by their diabetes. Complaints included

being more tired, having to pay attention to and/or test-

ing blood glucose levels during games, needing to

request to come out of a game, and going low during

sporting events. One male in the 15- to 16-year-old

group stated that his blood glucose dropped too low dur-

ing a football practice and that he had a seizure. Others

note that parents bring them food during their sport

events or that they eat or drink to get their blood glucose

levels higher before an event to prevent potential low-

blood-glucose episodes. Driving was viewed to be a bit

of a hassle by the older group of teens (17-18 years)

“because you get in the car you have to check your blood

sugar and its too high then you are not legal to drive and

then you have to have someone else drive you.” One

male participant in the 15- to 16-year-old group noted

that he had hoped to be a fighter pilot but has learned that

he cannot enter the US Armed Services.

Impact on Relationships

Participants in all groups were asked to discuss how

their diabetes has affected relationships with their par-

ents, their friends/peers, and their physician. Each of

those relationships had subthemes as well, which are dis-

cussed in detail below.

Parental Relationships

Participants were queried regarding how having dia-

betes influenced their relationships with their parents.

Three subthemes emerged from the data: parental con-

cern and overbearing behaviors, parental support, and

letting go of control.

Parental concern and overbearing behaviors. Most

participants across all focus groups discussed situations

in which their parents demonstrated concern regarding

their ability to manage their diabetes. The adolescents

stated that their parents’ behaviors as a result of this con-

cern could be overbearing or “annoying,” “stressful,”

“controlling,” “nagging,” and “overprotective.” Others

stated that their parents would “freak out” or “go nuts” if

their blood glucose readings were abnormal. One partic-

ipant stated that these types of parental behaviors made

her feel “like I’m drowning.” Another suggested, “they

get concerned too much.”

One issue raised was the inability to do “normal

teenage things” because of overbearing parental behav-

iors. For example, teens spoke about being prohibited

from spending the night with friends and going on camp-

ing trips and school trips because of fear that their blood

glucose levels might go too high or low. Others stated

that if they did get to participate in these events, they had

to check in with their parents repeatedly. One of the 13-

to 14-year-old females gave this example: “When I get

invited to a friend’s house, my mom tells me to call her

every time that I eat and every time that I give myself a

shot.” However, when questioned further, the same teen

acknowledged that she would probably rather have to

call than not call, because “if you fainted at your friend’s

house and she didn’t know what to do then you would

probably die.”

Some of the participants noted that one parent was

more knowledgeable about diabetes and how it affected

them specifically than the other parent was and that this

could be a source of conflict. One of the female partici-

pants in the 17- to 18-year-old group described it in this

manner:

My dad is constantly telling me that I am not doing

what I am supposed to be doing and that I am doing

things wrong. He just doesn’t understand my case.

When you first go to the hospital they teach you how

to handle it for you. My dad wasn’t there so he just

doesn’t know what I am supposed to do for my case.

When I exercise I go low, and with most other people

that is the opposite. It takes 4 hours to actually catch up

with me. I am a very weird diabetic. My dad doesn’t

understand that so it gets frustrating.

Many of the participants, especially in the 17- to 18-

year-old group, wanted their parents to begin to give up

some of their control: “I would say, back off a little. They

always say that I am going to have to take care of myself

when I get older. I know that I can.” Those who felt their

parents tried to be in control stated that they “always tell

you what you can and cannot eat” or “how much insulin

to take and not to take.” One of the males in the 13- to

14-year-old group stated, “I want to be responsible and I

want to handle it on my own. My mom is always asking

me and checking my meter. It makes me feel like she

does not trust me.”

One issue of concern was the number of participants

who noted that to avoid parental conflicts, they some-

times chose not to test if they thought they were high or

low because of the expected negative parental reaction.

Parental support. Some of the participants acknowl-

edged that their parents have been incredibly supportive

of them as they have dealt with their diabetes. One of the

teens in the 13- to 14-year-old group acknowledged, “I

have found that they are usually right when they are con-

cerned.” There was some agreement that parents think

the diabetes is harder on their children than how the

teens perceive it themselves. One teen stated, “I think

that it bothers them more than it bothers me that I have

it. They are very supportive.” One of the male partici-

pants in the 17- to 18-year-old group described his rela-

tionship with his parents this way:

They are not bad at all. They have always been behind

me and very supportive. They don’t bug me about food

and that stuff but they will bug me about testing. All

they really do is ask, though, they don’t nag. They just

want to make sure that I am doing what I am supposed

to do.

Participants acknowledged that parents ensured that

they had all the supplies that they needed, scheduled

physician’s appointments, and placed calls to the physi-

cian’s office if there were any problems. One of the

females in the 13- to 14-year-old group offered, “My

Role of Significant Others in Adolescent Diabetes

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Volume 32, Number 2, March/April 2006

parents try to answer questions that people ask the best

way they can so that I don’t have to.” One of the males

in the 15- to 16-year-old group described his relationship

with his mother in a positive manner: “My mom is will-

ing to do anything and everything that she can. She goes

with me every time to the doctor.”

Letting go of control. Participants talked about their

belief that their parents did not always acknowledge how

much they knew about their own disease. It seemed

important, especially as the teens aged, for parents to

relinquish some control and begin to trust their children

to control their own condition. One of the males in the

15- to 16-year-old group described a positive experience

of his mother letting go of control in this way:

My mom has gotten a lot better. I think that she is wor-

rying less because she has realized that I can take care

of myself. She started putting more responsibility on

me. Things like what I ate and when I tested.

Teens believed that it was important for them to feel

that their parents trusted their diabetic management.

They acknowledged that it was scary for parents to let go

of control and suggested keeping lines of communica-

tion open so that management could be discussed in a

way that was not punitive or “blaming.” One of the

females in the 15- to 16-year-old group described how

her parents have supported her by letting go of control:

They don’t know what insulin that I get or when I test

since I have gotten the pump. I do everything. I want to

have that control because I will be going to college. I

don’t want to have to be dependent on anybody else. It

wasn’t like they had to stay out of it, but it started out

with them doing everything. As soon as I had the free-

dom to do it myself I realized that I could do it. I need

their help sometimes but I want to be able to do it

myself.

Several of the participants acknowledged that they

felt their parents and other family members did not

understand as much about diabetes as they thought they

did. This can lead to misunderstandings and even fear

about honestly reporting blood glucose levels. One par-

ticipant in the 15- to 16-year-old group stated,

Everyone makes mistakes and sometimes parents pun-

ish them. If they don’t think that I was taking care of

my diabetes they will ground me. Parents need to real-

ize that we are going to make mistakes. I think that at

our age we want more responsibility. The fact that we

are 16 and driving shows that we are old enough to

have responsibility when it comes to our diabetes. We

need to know this stuff so that we can move out some

day.

Another of the males in that same group shared a similar

experience:

It seems that my mom is overbearing sometimes.

Sometimes I feel like she doesn’t want me to take con-

trol because I might screw something up. She doesn’t

let me make any decisions about my diabetes. If she

would let me deal with it now I wouldn’t have to be

thrown into it when I go to college.

Peer Relationships

The focus group facilitator queried participants

regarding their relationship with their peers, as it related

to their diabetes. Three subthemes emerged from the

data: peer support, peer intrusive behaviors, and peer

lack of understanding.

Peer support. In general, friends were positively per-

ceived in terms of support with diabetic management.

Participants spoke about how friends were aware of their

condition and were helpful if they were ever in trouble.

Many of the participants stated that their friends are sup-

portive of them testing. Some commented that their

friends “always want to try it [testing]” or “think it is cool

when I take shots in the middle of class.” One of the

females in the 17- to 18-year-old group gave this example:

I am really grateful for my friends because I was a

cheerleader and I played basketball and all of these

sports. They were always there when I was low. If I

couldn’t walk or something then they would help me

and give me juice or whatever I need.

Participants stated that it is easier for them to tell their

friends about diabetes than to hide it. They can become

a safety mechanism for the teens, “They know when my

sugar is getting low and they get me something to eat

when I need it.”

Peer intrusive behaviors. Most of the comments

regarding intrusive behaviors were not specific to the

participant’s group of friends but to others in their school

or that they encountered in their daily lives. One female

participant in the 13- to 14-year-old group did state,

however, “My best friend acts like my mom. It gets on

my nerves.” The intrusiveness is generally related to

questioning. For example, one of the females in the 13-

to 14-year-old group shared this scenario: “It’s like at the

pool, when you have your side pump on and people ask

questions about it. Then you have to give a whole expla-

nation. It’s kind of annoying.” Other teens mentioned

that peers will repeatedly ask them if they are all right,

which can become annoying. Another teenage girl in the

13- to 14-year-old group discussed her irritation at her

diabetic management regimen being questioned by peers

who do not know much about the disease:

The only thing that really annoys me is when people

ask if I can have something to eat, because of my dia-

betes. They need to realize that I wouldn’t be eating it

if I couldn’t have it. It is annoying when people ask me

if it hurts to test. I don’t mind if they ask questions

about what I’m doing. I think curiosity is a good thing,

but when people ask you hundreds of times if some-

thing hurts, it gets tiresome.

Peer lack of understanding. Some of the participants

acknowledge that it is difficult for other teens to under-

stand their condition. “Sometimes when I have to leave

the same class before lunch kids say that I am only doing

it to skip class,” stated one of the 13- to 14-year-old

females. Others say that the diabetic teens are lucky if

they get to leave class early to test or because of a blood

glucose level fluctuation. One of the downfalls that the

teens acknowledged was that there are many individuals

who know very little about diabetes. The fact that others

may not know about the condition placed teens in a situ-

ation of feeling that they need to be more careful about

their own condition because others may not be able to

help them if something should go wrong. One of the

females in the 13- to 14-year-old age group stated,

“When I am away from home I get more nervous about

it and I test it more just to make sure it is fine.”

Physician Relationships

The focus group facilitator queried participants

regarding their relationship with their physicians, as it

related to their diabetes. Two subthemes emerged from

the data: physician demeanor and physician access/

communication.

Physician demeanor. It is clear that the “bedside

manner” or personal demeanor of the physician is a key

factor for these adolescents. A great deal of the conver-

sation regarding physicians centered on interpersonal

relationships the teens experienced with their provider. It

is very important to a participant that he or she be seen

as an individual first, then as someone who has a disease.

One of the teens in the 17- to 18-year-old group

explained it this way:

I like my doctor a lot. I am still with my pediatrician.

He is on a personal level with me. He asks about my

grades and other things in my life. It is nice to know he

actually cares about me. We have to see him so often

that it is important.

Other participants indicated that they were happier with

their physicians when they were able to talk to them

about nondiabetic situations and when they supported

them in living life in a way that worked for the teens

rather than merely “feeding you information.”

A concern that was voiced involved physicians and

staff members leaving the room to discuss a case and

then returning with the answer:

She and her staff always go out then come in and tell

me things and then go out and talk and then come in

and tell me more stuff. I just want them to talk about

stuff in front of me.

Others agreed that some physicians and medical students

treated them as a disease rather than as a person.

Comments included, “They look at you like you are the

disease,” “It’s not comforting,” and “They look at me in

a really crude way.”

Some of the suggestions made to physicians included,

“Look at each age group that you are dealing with. I am

18 so I should be treated like I’m 18 and not 13,” “Hear

us out and let us figure some things out,” and “Don’t talk

down to your patients—sometimes it feels like they

think I’m incompetent.” Others suggested, “Don’t

threaten your patients—just try to help them get it [their

diabetes] under control.”

Physician access/communication. Time spent with

the physician was important to some of the participants.

Not all of the teens felt that the physician took time to

answer all of their questions, although they might send in

another staff member to do so. One of the participants in

the 17- to 18-year-old group stated,

My doctor is a really good doctor but she only spends

20 minutes and sometimes there are a lot of things that

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249

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Volume 32, Number 2, March/April 2006

I would like to tell her. She is gone in 20 minutes and I

waited 2 hours to see her.

There was a clear age difference among the participants

in terms of how they wanted physicians to communicate:

with/to them primarily or with/to their parents. Not sur-

prisingly, those in the older age groups wanted more

communication channeled directly to them. One partici-

pant indicated, “Sometimes I wish that my doctor would

talk to me alone because all my mom does is give me a

lecture.”

Several of the participants indicated that they used e-

mail communication with their physicians; this was

viewed as a positive, even by those participants for

whom this was not available. E-mail communication was

used for things such as advice on changes to be made for

sporting events, questions that they have, and following

up on blood glucose readings.

Participants who felt they had a good relationship

with their physician noted that they were more careful

about their diabetes management before and after their

physician appointments. They stated that the physicians

have told them “everything we need to know,” and so it

is fresh in their minds and they are more careful. They

acknowledge that they “slowly drift” over the next few

months but that they are fairly set in their routines for the

first month after an appointment. These participants stat-

ed they “don’t want her to be disappointed” or “don’t

want my doctor to be mad at me.”

Impact on School

Many of the participants indicated that their diabetes

has had relatively little, if any, impact on their school

life. Others, however, shared some ways in which school

life has been affected. Participants that have trouble with

unstable blood glucose levels state that they miss a fair

amount of classes. One of the females in the 17- to 18-

year-old group shared the following:

I tend to have problems in the morning. So people

always ask me why I haven’t lost credit in that class. I

get exempted for things when I miss class and it is dia-

betes related. I hate that people think I am using it for

an excuse. I would rather be at school than be behind.

One of the females in the 13- to 14-year-old group

shared, “I have made friends with the school nurse. I hate

getting low, missing class, and having to catch up.”

Some of the students, however, resented the school nurs-

es, feeling that they “don’t trust me . . . they watch me do

everything and second-guess me all of the time.” Others

indicated that the nurses do not allow them to return to

classes until their blood glucose is stabilized, which

means that they miss a lot of classes and have more work

to make up.

A few of the participants found it difficult to deal with

their diabetes at school. It is uncomfortable to have their

blood glucose levels drop and have to leave class to get

to the school nurse’s office. Others indicated that there

are some problems with some of their teachers. They

may become angry or yell at students who need to leave

the classroom because of their blood glucose levels. For

example, one student shared,

The teachers accept what is going on, except for the

teacher I have right before lunch. I have to leave a lot

because that is when I get the lowest and he gets really

ticked at me.

Another participant in the 15- to 16-year-old group com-

mented on the lack of understanding:

I get annoyed when my teacher won’t let me go to the

bathroom when I want to because when my numbers

are high I have to go to the bathroom. Before I was

diagnosed I would drink a lot—which is a symptom—

and they wouldn’t let me go to the bathroom.

Some participants noted that they find it difficult to go to

gym class because they do not know how to eat prior to

class. One participant in the 13- to 14-year-old group

stated, “It affects my gym class because my teacher

hounds me. He asks me if I am okay and if I need to go

to the nurse after running a mile.”

Participants admitted to using their diabetes as an

excuse at times to get out of class. One of the 13- to 14-

year-olds admitted,

Sometimes I leave class 10 minutes before the end

because it is almost lunch and I can feel my blood

sugar getting too low, but I know I could wait. I have a

pass in my assignment book that says I can get a drink

or use the bathroom whenever I want. Sometimes when

there is nothing to do I get a pass to the bathroom and

walk really slowly.

Discussion

This qualitative focus group study provides insight

into adolescents living with type 1 diabetes, specifically

as it relates to relationships with parents, peers, physi-

cians, and school experiences. From the discussions that

occurred within the 5 focus groups, the following themes

were identified: personal perceptions of living with dia-

betes (which included living with diabetes, testing and

injections, and blood sugar fluctuations), impact on rela-

tionships (which included relationships with parents,

friends/peers, and physician), and impact on school.

The adolescents in this study were truly not much dif-

ferent from other children unaffected by chronic illness.

If one were to substitute the word homework for diabetes

in many of their statements, the feelings of frustration

and rebellion would not be altered radically. The critical

difference is that their struggle for independence has

more severe, and sometimes immediate, consequences.

They want to rebel but often know that they cannot. This

frustration is complicated by a hypervigilance on the part

of their parents to retain control—attention that the ado-

lescents often simultaneously appreciate and reject.

Diabetes in adolescence is fraught with equal and

opposite demands. One consequence of this internal

push/pull is that adolescents become more afraid to do

appropriate developmental activities. This can have a

significant impact on their normal progression to inde-

pendence and adulthood, ironically at odds with the

increased responsibility they have had to assume

throughout their lives to care for their disease. Their rela-

tionships with their peers are just as conflicted by their

diabetes as those with their parents. Many of their

friends and their families shy away from the potential

responsibilities of a relationship with a diabetic child;

others try and step into the role of caregiver, whether it

is welcome or not. Schools can fail to recognize that

some of these adolescents need to be given more of an

ability to care and make decisions for themselves while

simultaneously abdicating their responsibility to provide

a safe environment for these children. These conflicts,

and the adolescent’s inability to control many of the fac-

tors that influence his or her life, can lead to a feeling of

learned helplessness instead of one of emerging confi-

dence in their independence.

There are several limitations to this study. Some

include the focus group methodology itself: small con-

venience samples limit the generalizability of the find-

ings, group consensus may inhibit an individual from

stating his or her differing opinion, and introverted indi-

viduals may be more apt to keep silent about their opin-

ions. This particular study does not address perceptions

of the parents, peers, or physicians about the relation-

ships with the diabetic adolescents. However, a second

article does examine the perceptions of parents raising

adolescents with diabetes (in process). This is necessary

to provide corroboration with the adolescents’ percep-

tion of the parent-teen relationship.

The breadth and depth of the information gleaned

from these discussions has implications for those who

work with adolescents living with diabetes. These find-

ings reveal areas in which researchers could improve the

lives of teenagers with diabetes coping with their emerg-

ing independence into adulthood. Clinicians need to help

adolescents assume responsibility, perhaps as negotiators

between them and the other powers in their lives.

Clinicians may need to be more active participants in

refining the relationships teenagers have with their par-

ents and schools in the care of their diabetes. More time

needs to be spent on how to care for their diabetes than

on a focus of outcomes. Much of the clinical time and

research still focuses on the devices of diabetes care:

testing and treatment. While these are important tools in

improving the outcomes of people with diabetes, they

will have little impact on the adolescent until the devel-

opmental consequences of diabetes on their lives are

simultaneously addressed. These findings illustrate that

providers should consider the important role that parent-

child relationships play in how diabetes therapy is

accepted and acted on. They suggest that providers may

want to discuss relationship issues and determine

whether some compromises should be discussed to

improve therapeutic status. Important improvements and

an increased awareness of these factors have been

accomplished in the past 20 years; much more needs to

be done.

References

1. Curtis JA, Hagerty D. Managing diabetes in childhood and ado-

lescence. Can Fam Physician. 2002;48:499-502, 505-499.

2. Anderson BJ, Wolpert HA. A developmental perspective on the

challenges of diabetes education and care during the young adult

period. Patient Educ Couns. 2004;53:347-352.

3. Anderson BJ. Children with diabetes mellitus and family func-

tioning: translating research into practice. J Pediatr Endocrinol

Metab. 2001;14(suppl 1):645-652.

4. Gowers SG, Jones JC, Kiana S, North CD, Price DA. Family

functioning: a correlate of diabetic control? J Child Psychol

Psychiatry. 1995;36:993-1001.

Role of Significant Others in Adolescent Diabetes

251

Carroll and Marrero

The Diabetes EDUCATOR

252

Volume 32, Number 2, March/April 2006

5. Daneman D, Wolfson DH, Becker DJ, Drash AL. Factors affect-

ing glycosylated hemoglobin values in children with insulin-

dependent diabetes. J Pediatr. 1981;99:847-853.

6. Anderson BJ, Brackett J, Ho J, Laffel LM. An office-based inter-

vention to maintain parent-adolescent teamwork in diabetes man-

agement: impact on parent involvement, family conflict, and

subsequent glycemic control. Diabetes Care. 1999;22:713-721.

7. Kaufman FR, Halvorson M, Carpenter S. Association between

diabetes control and visits to a multidisciplinary pediatric dia-

betes clinic. Pediatrics. 1999;103(5 pt 1):948-951.

8. Anderson B, Ho J, Brackett J, Finkelstein D, Laffel L. Parental

involvement in diabetes management tasks: relationships to

blood glucose monitoring adherence and metabolic control in

young adolescents with insulin-dependent diabetes mellitus. J

Pediatr. 1997;130:257-265.

9. Koski ML. The coping processes in childhood diabetes. Acta

Paediatr Scand Suppl. 1969;198(suppl 198):1+.

10. Miller-Johnson S, Emery RE, Marvin RS, Clarke W, Lovinger R,

Martin M. Parent-child relationships and the management of

insulin-dependent diabetes mellitus. J Consult Clin Psychol.

1994;62:603-610.

11. Coyne JC, Anderson BJ. The “psychosomatic family” reconsid-

ered: diabetes in context. J Marital Fam Ther. 1988;14:113-123.

12. Minuchin S, Rosman BL, Baker L. Psychosomatic Families:

Anorexia Nervosa in Context. Cambridge, Mass: Harvard

University Press; 1978.

13. Frey MA, Guthrie B, Loveland-Cherry C, Park PS, Foster CM.

Risky behavior and risk in adolescents with IDDM. J Adolesc

Health. 1997;20:38-45.

14. Ludvigsson J. Socio-psychological factors and metabolic control

in juvenile diabetes. Acta Paediatr Scand. 1977;66:431-437.

15. Marrero DG, Golden MP, Kershnar A, Myers GC. Family dynam-

ics in adolescent diabetes mellitus: Parental behavior and meta-

bolic control. Psychological aspects of diabetes in children and

adolescents. In: Kaplan SA, ed. Clinical Pediatric and Adolescent

Endocrinology. Philadelphia, Pa: Saunders; 1982:ix, 392.

16. Morse JM, Field P-A, Field P-A. Qualitative Research Methods

for Health Professionals. 2nd ed. Thousand Oaks, Calif: Sage

Publications; 1995.