Nursing and Health Sciences (2004), 6, 287–293

Research Article

Support network of adolescents with chronic disease:

Adolescents’ perspective
Helvi Kyngäs, phd, professor
University of Oulu, Department of Nursing and Health Administration, University Hospital, Oulu, Finland

Abstract The purpose of this study was to describe the support network of adolescents with a chronic disease
from their own perspective. Data were collected by interviewing adolescents with asthma, epilepsy,
juvenile rheumatoid arthritis (JRA) and insulin-dependent diabetes mellitus (IDDM). The sample
consisted of 40 adolescents aged between 13 and 17 years. Interview data were examined using
content analysis. Six main categories were established to describe the support network of adoles-
cents with a chronic disease: parents, peers, school, health care providers, technology and pets.
Peers were divided into two groups: fellow sufferers and peers without a chronic disease. At school,
teachers, school nurses and classmates were part of the support network. Health care providers
included nurses, physicians and physiotherapists. Technology was also part of the support network
and included four techniques that may be used to communicate: computers, mobile telephones,
television and videos. The results provided a useful insight into the social network of adolescents
with chronic disease and serve to raise awareness of the problems and opinions experienced by
adolescents with this condition.

Key words adolescence, chronic disease, social support, support, support network.

INTRODUCTION a person with regular positive experiences, which influ-

ence his/her well-being (Cohen & Wills, 1985).
Social support is often defined as emotional, instru-
Social support is regarded as a crucial factor for ado-
mental and informational support. Emotional support
lescents with a chronic disease (LaGreca et al., 1995;
relates to the provision of empathy, care, love, trust,
Price, 1996; Kyngäs et al., 2000a). It has been found to
understanding and listening. Instrumental support con-
promote coping with chronic disease (Graetz et al.,
sists of the provision of tangible aid and services, such
2000) and compliance with health regimens (Dunbar-
as loan of money or help with child care. Informational
Jacob et al., 2000; Kyngäs & Rissanen, 2001). The most
support includes advice, information and knowledge
important members of the supportive network are
that help with the understanding of and coping with
family, friends and health care providers (Dunbar-
problematic events (Cohen & Wills, 1985). Social sup-
Jacob et al., 2000; Carson & Voorhees, 2001; Kyngäs &
port is received from the members of the social net-
Rissanen, 2001). Family variables, such as a positive
work, but not all people are supporters. Social
family climate and open relationships between the
networks may be a source of additional strain and
family members, provide valuable support for adoles-
stress, because some people may cause more problems
cents. Conversely, family conflicts and poor relation-
and conflicts than offer support, when they exercise
ships between the family members do not support
social control on the family (Rose, 1997; Åstedt-Kurki
adolescents and seem to be associated with poor com-
et al., 1999). However, a large social network provides
pliance (LaGreca et al., 1995; Miller-Johnson et al.,
1994; Kyngäs et al., 2000b).
Close peer relationships are another important
source of support for chronically ill adolescents at a
Correspondence address: Helvi Kyngäs, University of Oulu, Department
of Nursing and Health Administration, University Hospital, Box 5300,
time when they have to tackle both developmental
90014 Oulu, Finland. Email: [email protected] tasks and disease-related challenges (Miller-Johnson
Received 7 October 2003; accepted 23 April 2004. et al., 1994; Kyngäs et al., 1998; Weissberg-Benchell &
288 H. Kyngäs

Antisdel, 2000). Family members provide tangible sup- 17 years) with asthma, epilepsy, juvenile rheumatoid
port and friends offer companionship (LaGreca, 1992; arthritis (JRA) or insulin-dependent diabetes mellitus
Graetz et al., 2000). While parents continue to play the (IDDM) in Finland.
role of primary caregivers, friends and peers provide Twelve hundred individuals were selected from the
emotional support by accepting their ill friend with his Finnish Social Insurance Institution’s register (Kyngäs
or her physical limitations. Many chronically ill adoles- & Rissanen, 2001). The criteria for sample selection
cents feel different from, and socially more restricted were that the disease had been diagnosed more than
than, their same-age peers (Seiffge-Krenke, 1996; 1 year previously and the adolescent was aged 13–
Tijhuis et al., 1998; Graetz et al., 2000; Carson & 17 years. Every 15th person on the list of adolescents
Voorhees, 2001). The emotional support from friends is with asthma, every fifth adolescent with IDDM,
largely oriented towards helping the adolescent to feel every fifth adolescent with epilepsy and every second
accepted. For example, peers may assist with the daily adolescent with JRA were included in the sample. The
diabetes management by providing reminders to test questionnaire had 58 items on the following topics:
the blood glucose level or to take insulin (LaGreca, compliance; sense of normality; support from nurses,
1992; Kyngäs et al., 1998). However, it is possible that physicians, friends and parents; energy and willpower;
some peer groups may exert negative influences on motivation; subjective experience of results; impact of
adolescents with a chronic disease (LaGreca, 1992; disease; attitude; fear of complications and fear of
Kyngäs et al., 1998). The lifestyles of adolescents with asthma attacks; hypoglycemia; seizures or uncontrolla-
diabetes who had poor compliance were found to be ble pain. Twelve questions concerned background
shaped by their friends. They wanted to live like their variables. The questionnaire was formatted using five-
friends, which often made it impossible for them to point Likert scales from ‘definite agreement’ through
carry out the recommended self-care plans (Kyngäs ‘indecision’ to ‘definite disagreement’. A letter where
et al., 1998). anonymity was assured was enclosed with the ques-
The treatment of chronically ill adolescents is a chal- tionnaire to invite the responding adolescents to par-
lenge for the health care staff (Baker & Stern, 1994; ticipate in an interview about their care and everyday
Bradbury & Jenkinson, 1998; Randolph & Fraser, life with a chronic disease.
1999). The quality of the interaction between the The questionnaire was returned by 1061 adolescents.
patient and the health care professional responsible for Respondents willing to participate in the interview
the plan of care is very important (Baker & Stern, were asked to send their address to the researcher. Two
1994; Kyngäs et al., 1998; Roter et al., 1998). When hundred and sixty-four adolescents volunteered to par-
patients are encouraged to actively participate in deci- ticipate in the interview. Their names were listed in
sions concerning their care, they may be more commit- alphabetical order and every third name was picked
ted to those decisions (Kyngäs et al., 1998; van Es et al., from the list. The interview sample thus consisted of 88
1998; Randolph & Fraser, 1999). adolescents with a chronic disease. The selected ado-
Although the support of adolescents with a chronic lescents were contacted to confirm their participation
disease has been studied, very little is known about the in the interview. Eighty-four adolescents were reached.
support network from the adolescent’s own perspec- Every second adolescent (n = 40) was interviewed, so
tive. The purpose of the present study was to describe that the final sample for this study consisted of 40 ado-
the support network of adolescents with a chronic dis- lescents (Table 1).
ease. Thus, qualitative study was conducted to address
the research question; what comprises the support net-
Data collection
work of adolescents living with a chronic disease?
When the informant’s participation in the interview
was confirmed by telephone, an appointment for the
METHODS
interview was made at the same time. The adolescents
were told that the interviews would concentrate on
Sample
their everyday life with a chronic disease and consist
Data were collected via the Finnish Social Insurance of open discussion. The interviews were carried out at
Institution’s register. In Finland, all patients with a the hospital, at the adolescents’ homes or at the
chronic disease are registered by the Social Insurance researcher’s office. Each interview lasted for 1–2 h
Institution for reimbursement of the cost of treatment (mean 1 h 18 min). The interviews dealt with the fol-
and care. Adolescents with a chronic disease were most lowing two topics: everyday life with a chronic disease
readily contactable via that register. At the time of and the informant’s support network. Semistructured
data collection, there were 8671 adolescents (aged 13– interview guides with a schedule were used to help the
Support network 289

Table 1. Background information about participants permission for the interviews to be recorded was
obtained. The research plan for this study was reviewed
Characteristic F Percentage and approved by the Board of Ethics of the local med-
ical faculty.
Sex
Female 26 65
Male 14 35 Reliability and validity
Disease
Asthma 12 30 The reliability of a study of this kind is based on valid
Epilepsy 8 20 and accurate gathering of data, the adequacy and valid-
Diabetes 14 35 ity of the research process, and proper empirical
Juvenile rheumatoid arthritis 6 15 grounding of the research findings. The adolescents dis-
Age (years) cussed very freely and all interviews were taped. Data
13–14 10 25 were analyzed using content analysis. During this anal-
15 18 45 ysis, the link between the data and the categories was
16–17 12 30 ascertained and face validity was used to verify the
Duration of disease (years)
findings. This is a very simple process, by which the
<3 12 30
research product is viewed and, on the face of it,
3–8 16 40
>8 12 30 assessed for truth or fit with the reviewer’s perception
of reality. The results were then discussed with 12 ado-
lescents with chronic disease aged 13–17 years, and
they all agreed with the findings presented in this
interviewer. Questions of the following types were paper.
asked:
• What is your everyday life like?
• From whom and what kind of support do you FINDINGS
receive? Six main categories were established to describe the
• How would you describe your support network? support network of adolescents with a chronic disease:
• What kind of experiences have you had of your parents, peers, health care providers, school, technol-
chronic disease? ogy and pets. During the interviews, the adolescents
During the interviews, the adolescents were system- talked most about their parents.
atically encouraged to give examples and to explain the
reasons for their answers. The adolescents discussed
readily and openly the issues raised in the interview. Parents
All interviews were transcribed verbatim from the
Parents were an important part of the support net-
tape-recorded conversation. The interviews were car-
work. Participants emphasized the significance of
ried out in 2001–2002.
discussion and active communication between their
parents and themselves. Two different types of discus-
Data analysis sion were identified. The first was open discussion,
where parents had a natural interest in their adoles-
The interview transcripts were analyzed using content
cents. Topics of discussion included the disease and its
analysis. Content analysis is a process of analyzing doc-
treatment, as well as other issues such as smoking, sub-
uments systematically (Miles & Huberman, 1994;
stance abuse, growing up, relationships with friends,
Hickey & Kipping, 1998; Kyngäs & Vanhanen, 1999).
hobbies and school. The parents wanted to know their
The categories and their contents were derived induc-
children and wanted to comply with the adolescents’
tively from the data during the process of analysis. Sim-
wishes as much as possible. The parents’ natural inter-
ilar events and incidents were grouped together into
est in their adolescents and their life helped the ado-
categories. Content analysis was continued until all
lescents cope with everyday life. The adolescents were
themes were saturated (Miles & Huberman, 1994;
able to share almost all issues and emotions with their
Kyngäs & Vanhanen, 1999).
parents. The family climate was safe and open and the
parents were perceived as having time for their
Ethics children.
It was emphasized that participation in the study was My parents are the most important supporters. We
entirely voluntary. Anonymity was guaranteed and discuss everything . . . almost everything . . . there
290 H. Kyngäs

is nothing I cannot discuss with my parents. I feel ers and friends without a chronic disease. The friends
that they are there just for me. They want to pre- who had a chronic disease themselves really under-
pare for me good adulthood and life overall . . . stood, cared and supported each other. The adoles-
They help me to take good care of my arthritis . . . cents felt that it was easy to talk with other adolescents
I can express my emotions . . . sometimes I have who had a chronic disease and highly valued their sup-
very bad pains and my parents help me to stand port. In that case, the two persons could understand
them . . . Of course we have conflicts sometimes, each other without any explanations. It was also found
but we can discuss them, forgive and to be important that the fellow sufferer was of the same
forget . . . (Respondent 32) age. In that case, both could understand life in adult-
hood and its special needs. Some of the respondents
The second type of discussion focused on questions
felt that a fellow sufferer with many complications was
of how well the adolescents had taken care of them-
not a good supporter because her/his problems may
selves. The parents initiating these types of questions
cause depression and fears, while others felt they could
were perceived as being strongly oriented to their work
learn something about them.
with little interest in their adolescent’s chronic disease.
They asked if the adolescents had taken their medica- . . . fellow sufferers are the best supporters . . .
tions, used splints, tested their blood sugar level, gone They really know what they are talking about.
to see their physicians as scheduled and so on. Accord- They can understand my feelings . . . it is so easy to
ing to the informants, the parents, by asking these understand others when you have the same kind
questions, expected to be able to ensure that the of experiences . . . Sometimes you do not need
adolescents followed the instructions given by the words . . . you can share your emotions and feel-
health care providers. The adolescents answered with ings by just being silent . . . or put your head on
what they thought their parents wanted to hear— the other person’s shoulder and cry . . . she knows,
whether it was true or not. They felt irritated by their she understands why I am crying . . . (Respondent
parents’ continuous questioning about their disease 5)
and its treatment. These adolescents felt that their par-
Not all very close friends had a chronic disease. With
ents were not interested in them as their children, and
them, the adolescents were able to share their emo-
by asking, they tried to convince themselves that they
tions and almost all issues in their life, including their
were involved in their child’s life. Relationships of this
disease and how they coped with it. It was noted that
kind did not support the adolescents emotionally and
most of the topics of discussion with close friends were
did not encourage them to take care of themselves.
something other than the disease, while the topics
Nevertheless, parents were an important part of the
shared with fellow sufferers were very often about the
adolescents’ network because of the financial support
disease.
they provided. The parents gave money to the adoles-
Having a boyfriend or girlfriend was felt to be
cents, a home in which to live and provided the things
important because it was symbolic that the adolescent
they needed for their everyday life.
was accepted by people of the opposite sex. Being
My parents are the busiest people in the word. accepted with their chronic disease was vital for their
They work and work . . . they are never at self-esteem. In keeping with typical teenagers, the ado-
home. . . . it means I get money, I get everything I lescents were able to share all issues with their girl-
need in my life except the love and support of my friend or boyfriend, including their disease, their life
parents . . . If I think about my chronic condition, with it and their plans for the future.
my parents do not support me. They ask if I have
taken my medications etc . . . they suppose that by
Health care providers
their strict questions they can control my self-care
but . . . it is not so . . . I answer what comes to my Good listeners were health care providers who under-
mind and . . . no emotional support, no discussion, stood the adolescents’ life situation and feelings. Their
no love . . . not time for me . . . but I really get work aimed to meet the adolescents’ needs, and they
money . . . but I would like to exchange money for also encouraged the adolescents to express their nega-
my parents’ love and support . . . (Respondent 3) tive as well as positive feelings. They did not have good
knowledge about the disease and its treatment.
Experts had a very high knowledge level about the
Peers
disease and its treatment, however, it was perceived that
Peers were an important part of the support network they were able to discuss only these topics. The most
and were divided into two subcategories: fellow suffer- important thing was that all issues related to the disease
Support network 291

were viewed as a positive, such that the adolescent’s mended for them. They tried to persuade them to fol-
feelings of sadness or depression were ignored. Health low an irregular and unhealthy lifestyle. There were
care providers paid some attention to the adolescent’s also classmates who teased the adolescents because of
life situations and feelings, but did not take a very active their chronic disease.
stance. The adolescent saw them as primarily engaged
. . . some classmates always support me, even
in their work routines as well as the routines of the hos-
though some others tease me, for example, because
pital. It was noted that they complained about how busy
I have to take my medication. The supporters
they were, and only did what they had to do.
remind me of how important it is to take my med-
. . . it is amazing that nurses, although they have ication and also tell the teasers that they do not
the same kind of education, are really different as understand the importance of medication . . .
nurses, just as physicians with the same education
and:
are very different. Some of them know everything
about the disease and its treatment but do not . . . I am always teased because of my arthritis. I
have any capacity for empathy. Some can under- am so clumsy, so slow . . . my fingers look bad . . . I
stand all my feelings and share them but do suffer a lot of teasing . . .
not have very good knowledge about the
disease . . . or they do not have an ability to sense
my bad feelings or sadness or frustration . . . Technology
The communication between health care providers Technology was divided into the following subcatego-
and adolescents was partly accomplished through tech- ries of computer (Internet: chat rooms and information
nical communication via computers and telephone text sources), telephone (hot lines, text messages), televi-
messages. This type of communication was favored sion and video. Chat rooms were an extremely impor-
because it was seen as being very safe due to its imper- tant part of the adolescents’ support network, as were
sonality. The adolescent wanted to have more oppor- text messages. The reason for their popularity was that
tunities to communicate by computer or telephone they allowed them to communicate anonymously,
with the health care providers as they found those freely sharing all issues and emotions that they felt. The
medium easier than face-to-face contact. Internet was also used as a source of information con-
cerning the disease and its treatment.

School . . . the most important support network is the chat

rooms. I hang on there a lot. Nobody knows me, I
At school, the majority of teachers knew that the ado- can share freely my feeling and opinions . . . I do
lescent had a chronic disease, but continued to treat not need to be afraid that I lose my face. . . . I can
him/her in the same way as their schoolmates. The ado- chat any time, just when I need it . . . (Respondent
lescent sometimes used his/her disease to get special 36)
benefits. For example, he/she might not always partic-
ipate in sports or some other events and gave his/her Telephone hotlines, that is, direct telephone lines for
chronic disease as the reason. The disease did not really access to a specific service, also had an important role.
hinder his/her participation, but it was a good excuse. With the exception of three adolescents, all partici-
The disease was also sometimes used as an excuse to pants had a mobile telephone with the freedom to call
come late to school or to be absent from school. The almost anywhere and at anytime.
adolescents found it comforting to know that school Television and video programs were a popular part
nurses knew about the disease, and believed that if of the support network. Watching television or videos
something happened, the school nurse would help him/ or playing games allowed the adolescents to share their
her. feelings. However, some participants preferred these
forms of one-way communication to two-way commu-
. . . it is safe to know that if I got such bad hypogly- nication because it allowed them to take what they
cemia that I cannot help myself, the school nurse needed and did not require them to give anything in
will know what to do . . . return.
Some classmates accepted the adolescents as they
were and encouraged them to follow the instructions
Pets
given by the health care providers. An opposite role
was played by the classmates who tried to persuade the Pets were a very important part of support network.
adolescents to do something that was not recom- The adolescents discussed issues related to the disease
292 H. Kyngäs

as well as confiding in their pet every thought and Implications for nursing
secret they had. When adolescents were sad or felt
Implications for clinical practice include the need to
lonely, they took their pet, held it and gave their love
develop strategies to assist the adolescents in the diffi-
and warm feelings to it. It was felt that the pet really
cult task of coping with chronic disease within an ado-
understood their feelings and reacted to them in the
lescent’s lifestyle. There should be open discussion of
right way.
the kinds of support that adolescents expect to receive
There is nothing so painful that I could not tell it from health care providers. Also, the family and signi-
to my dog. She understands me and she is always ficant others must be involved in the care whenever
present when I need some support. She never possible and acceptable to the adolescent. They should
deceives me . . . and if I am very sad my dog gives be encouraged to provide emotional and physical sup-
her love to me . . . she says with her eyes that I port to the adolescent. It should be recognized that
understand your sadness . . . (Respondent 8) some parents may need assistance in learning how to
support their adolescents.
Findings noted that technology and pets were
DISCUSSION aspects of adolescents’ social support network. Health
care providers should take advantage of these concepts
The present study focused on the support networks
to develop innovative and creative methods that could
of adolescents with a chronic disease from the ado-
improve the professional support network, provide
lescents’ perspective. The findings indicate that par-
education regarding the disease and its management,
ents, peers, health care providers, school, technology
as well as guiding forums for discussion related to
and pets are important parts of the support net-
issues associated with chronic disease and adolescence
work. According to Kyngäs and Rissanen (2001), the
in general.
most important supporters consist of nurses, physi-
The findings suggest a number of avenues worthy
cians, parents and friends, with the most powerful
of further exploration. Technology as part of the
supporters being nurses. Graetz et al. (2000) argues
adolescents’ social support network needs further
that family members’ support is more important than
study. As the adolescents divided the role of health
friends’.
care providers into different categories, this warrants
The findings indicated that while the adolescent
investigation.
talked about parents, peers and health care provid-
ers as supporters, they each have a different role in
the support network. Support from the parents is ori- CONCLUSION
ented to all aspects of the adolescents’ everyday life,
while peers support by sharing the experiences of The support network of adolescents with chronic dis-
growing up, health care providers assist the adoles- ease includes parents, peers, school, health care pro-
cent in the understanding of their disease process and viders, technology and pets. Discussion and active
management. According to Graetz et al. (2000), fam- communication between the adolescents and parents
ily members’ and friends’ ways of supporting are dif- was very important. Two different types of discussion
ferent, but the aim of support is the same: to help the were identified. The first was open discussion, where
adolescents with a chronic disease to adjust psycho- parents had a natural interest in their adolescents, the
logically to their disease also (Woodgate, 1998a, second type of discussion focused on questions of how
1998b). For adolescents with a chronic disease, it is well the adolescents had taken care of themselves.
very important to have friends who also have a Peers were divided into two groups: fellow sufferers
chronic disease and have experienced the same medi- and peers without a chronic disease. At school, teach-
cal procedures (Gonzaler-Heydrich et al., 1998). By ers, school nurses and classmates were part of the sup-
promoting connections between chronically ill ado- port network. Health care providers were divided into
lescents, their emotional well-being may be good listeners, experts and busy workers. The pets
improved. understood adolescents’ feelings and reacted to them
It was interesting that the adolescents considered in the right way.
pets an important part of their support network.
Importantly, pets are available whenever the adoles-
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