297
Psychosocial Challenges for Children
with Insulin-Dependent Diabetes
Mellitus
JAMI S. POND, MS; MICHELLE L.
PETERS, BS; DANA L PANNELL, BS; COSBY S. ROGERS, PhD
This article describes the
particular relevance of Erik
Erikson’s psychosocial stages of
development for children with
insulin-dependent diabetes. The
developmental issues for young
children centering on trust,
autonomy, initiative, and
industry have special
significance for children with
diabetes. Although the issues
faced in each of Erikson’s
psychosocial stages are present
in every stage, behaviors
are
each
manifested differently
stage. Practical suggestions are
provided for families and
healthcare providers living with
or working with children of
at
various ages who have diabetes.
Approximately 651 000 new cases of insulin-dependent diabetes mellitus (IDDM) are diagnosed each year’; 11 000 of
these cases are children and teenagers, making IDDM the
second most chronic disease in the US in children .2 As children and caregivers struggle to manage metabolic control,
there is a parallel need for positive resolution of each of the
psychosocial issues delineated by Erik Erikson.~ Each of the
psychosocial stages encountered in childhood are described
in this article and the particular relevance of each stage for
children with IDDM is explained. Recommendations for
families and healthcare providers also are included.
According to Erikson’s eight-stage psychosocial theory,
the developing person experiences a crisis at each life stage
that results in a positive or alternative negative outcome.3
Any chronic illness has an impact on the child’s progression
through these psychosocial stages of development because
of the social and emotional consequences of the illness.
Within Erikson’s first psychosocial stage of development,
infants develop either a foundational trust or mistrust of the
world primarily through the establishment of a relationship
with a dependable caregivers. A positive relationship instills
in the infant a confidence that caregivers are predictable and
trustworthy. A negative relationship causes the infant to develop mistrust of the surrounding world and results in a
negative outcome of this first stage. During infancy when
trust is being formed, parents, caregivers, and other family
members assist in the formation of basic trust with their
presence and secure reactions. Caregivers engender trust by
providing a rhythmic schedule and a stable environment with
minimal changes in routines. However, routines may be altered due to the disruptions caused by hospitalizations.
Infants with IDDM who must be hospitalized may experience disruptions of home routines and often intrusive, painful medical procedures. These events not only interfere with
the infant’s efforts to master the developmental agenda of
behavioral organization and regulation, they also disrupt basic trust. According to Erikson, basic trust evolves in a world
that offers consistency, continuity, and sameness of experience. Therefore, caregivers may wish to establish ritualistic
routines that involve the parents as much as possible that can
be transferred to the hospital setting. Some typical routines
are
the rituals associated with bedtime, mealtime, separation,
and greetings.
From the Department of Family and Child Development, Virginia
Polytechnic Institute and State University, Blacksburg, Virginia.
Correspondence to Jami S. Pond, MS, Virginia Polytechnic institute
and State University, Department of Family and Child Development,
Wallace Hall, Blacksburg, VA 24061.
Reprint requests to TheDiabetesEducator, 367 West Chicago Avenue,
Chicago, IL 60610.
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298
Parents of young children diagnosed with IDDM have a
tremendous amount of responsibility for regulating the
child’s blood sugar levels through insulin dose, food, and
physical activity. To ensure good control, parents are required to administer insulin shots, regulate food intake, and
test blood sugar levels several times a day with only limited
verbal language to explain these often painful procedures.
Children may find it difficult to trust their caregivers because
these are the same people who cause them pain. Young
children lack the cognitive ability to understand that the
painful procedures are in their own best interest. However,
caregivers can convey a sense of trust by acting self-confident and assured of their own trustworthiness. The role of the
healthcare provider is to support the caregiver by building
confidence and a sense of trustworthiness.
Toddlers (ages 1 through 3 years) begin to develop a sense
of autonomy, Erikson’s second stage of development. As
they gain more control of their muscles, toddlers are able to
exercise their exploratory skills. However, a sense of shame
and doubt can develop if an impatient caregiver does not
allow the child to do what she or he is capable of doing. A
toddler with IDDM must contend with blood glucose moni-
toring, dietary needs, and possible hyperglycemic and hypoglycemic episodes. To understand these daily challenges to
their autonomy, children must incorporate the knowledge of
their illness into their emerging sense of self. A toddler,
having differentiated the self from the world, comes to understand the power of affecting change in the environment.
Lewis’ refers to this self-understanding as &dquo;self as agent.&dquo;
This newly discovered power associated with an emerging
of autonomy is reflected in the toddler’s refusal to
cooperate. Toddlers are learning to negotiate a delicate
balance between autonomy and continued dependence on
sense
primary caregivers. Consequently, parental worry and overprotection can frustrate the child’s motive to explore and
master the environment. Autonomy is threatened by undue
sympathy for the child, concern about hypoglycemic reactions, or other complications.’
Erikson’s third stage of development, initiative versus
guilt, involves a child’s explanations, perceptions, and
imaginations of the world and emerges in the preschool
years.3 The illness itself is a significant part of the world of a
chronically ill child. Because of limited cognitive understanding of the causes of illness, a child often associates
discomfort with punishment. From the child’s perspective,
any aversive treatment is the result of bad behavior.
a child perceives that illness can be cured
an adult at any time if the adult so chooses.<’ 6
Each of these beliefs are factors that contribute to a child
developing guilt rather than initiative. Healthcare providers
can help parents understand that it is normal for children of
this age to believe that their illness is a punishment. Information should be provided in concrete terms so as not to reinforce this belief. Assurance can be increased by verbally
stating the facts about IDDM.
In Erikson’s fourth stage of development, industry versus
inferiority, a healthy child develops a sense of industry at
school and home. it is usually during these years of middle
childhood that parents begin to transfer some responsibility
for the management of IDDM to the child. Children with
diabetes typically are ready to assume such self-care behav-
illness
or
Additionally,
magically by
iors as injecting their own insulin at approximately 9 years of
age.7 However, for a few children with type I diabetes, frequent absences from school can interfere with the acquisition
of new skills and the development of normal peer relationships, thus leading to feelings of inadequacy.
The proximal separation from parents caused by school
parallels the child’s growing capacity to separate the self
from others. These changes foster an emotional separation
from the parents.11 A child begins to perceive reality more
clearly in this stage of psychosocial development. This
greater sense of reality can be used to help a child cope
effectively with the illness and maintain some control.
Healthcare providers can help children with IDDM decrease
the sense of failure that many occur when blood sugar levels
become erratic in spite of careful compliance with their diabetes regimen.&dquo;
During the school-age years, children with diabetes
should be encouraged to attend school regularly and to participate in school activities and sports. They need to understand that although they have diabetes they are not ’sick.’
The need for regularity of meals, frequent blood glucose
monitoring, and insulin injections can make conformity and
acceptance by peers more difficult. Children with diabetes
often feel that they don’t belong because their differences
from peers are accentuated. Peer counseling and sharing
experiences can provide these children with the assurance
that they are not facing their problems alone. Peer support
groups are especially valuable to adolescents with IDDM,
who must face all the general difficulties associated with
adolescence superimposed on learning to manage a chronic
disease.9
One of the authors (JP) has lived with IDDM for the past
24 years and shares the following story to illustrate the psychosocial challenges of diabetes in a young teen.
.
My mother made it very clear from the time I was diagnosed with
IDDM at age 10 that she would help me in any way that she could,
but that ultimately the disease was mine and I was responsible for
my
own
management. When my doctor would say, &dquo;Jami needs
to .
,&dquo; my mother would say, &dquo;Don’t tell me, tell her.&dquo; When I was 133
years old I announced one morning that I was no longer diabetic,
and therefore was not going to give myself my insulin shot. My
mother could have insisted that I take my shot, thus limiting my
choices and autonomy. Instead, she allowed me the choice to skip
my shot but watched me closely (to intervene if medically necessary) and waited to see what I would do next. By that evening I felt
horrible (a natural consequence) and decided that an insulin shot
would make me feel better. My mother’s decision to let me choose
what to do for myself reinforced the positive choice and the experience of natural consequences that lead to responsible behavior. My
mother trusted me and my ability to make appropriate decisions. By
allowing me autonomy she demonstrated her belief in my capabili..
ties and allowed me to learn firsthand from my own experiences
and mistakes. Initiative was reinforced as I was allowed to deterT
mine and initiate the care I needed. This approach allowed me to be
angry at the appropriate entity, the disease, rather than at my
mother. Industry was achieved because my mother believed in me
and turned over to me some responsibility for managing my diabetes. This example demonstrates how a parent can help a child with
diabetes cope with the disease and simultaneously encourage positive solutions to psychosocial challenges.
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299
Conclusion
Developmental issues concerning the psychosocial development of children center
trust, autonomy, initiative, and
each stage is
manifested in different behaviors at different stages. Regardless of one’s age, trust requires a stable and predictable
environment and trustworthy people. Autonomy always requires at least some choice, albeit within boundaries defined
by medical restrictions. Initiative requires freedom to experiment with ideas and is associated with an ability to imagine
solutions. Imaginative play offers a therapeutic outlet for
feelings related to the challenges imposed on the child with
diabetes. Each crisis of trust, autonomy, and initiative is
carried over into the school-age stage of industry.
The interrelationship of each stage makes it necessary for
family members and healthcare providers to search for opportunities to build trust, autonomy, initiative, and industry
at every age. Trust can be enhanced at any stage by providing
consistent understanding and support. Autonomy can be increased by helping the child explore and master the environment with as few limitations as are appropriate for
maintaining health and conforming to social obligations.
Initiative can be increased by not allowing the IDDM to be
the sole focus of the child’s life. Helping children with
IDDM care for themselves and make as many decisions as
possible is paramount for maintaining adequate diabetes
care. Parents can be encouraged to gradually transfer responsibilities for diabetes care to their child. Sometimes children
and parents need to be pushed to accomplish this goal. Using
contracts can be effective if all parties mutually agree.
A knowledgeable diabetes educator can help keep children out of the hospital by offering support and being available to families to answer questions and concerns. Having
on
industry. The special crisis associated with
accurate information about managing diabetes can help the
child feel confident about handling the steps necessary to
ensure good metabolic control, thus improving the child’s
sense of industry. Having accurate information about the
disease also can help the child explain diabetes to peers,
which also improves the child’s sense of industry. Industry at
all ages can be aided by encouraging the development of the
coping skills that are necessary to face the reality of having
diabetes. These skills also help the child plan for the future.
References
1. Diabetes in the US. Atlanta, Ga: Center for Disease and Prevention,
1993.
2. National Institute of Health launches
Diabetes 1994:1-8.
3. Erikson EH. Childhood and
study
to
prevent diabetes. Va
society. New York: WW Norton,
4. Lewis M, Miller S, eds. Handbook of
New York: Plenum, 1990.
1950.
developmental psychology.
al. Ego development paths and
longitudinal studies of preadolescents and adolescents with insulin-dependent diabetes mellitus. In: Susman EJ, Feagans
LV, Ray WJ, eds. Emotion, cognition, health, and development in children
5. Hauser
adjustment
ST, Jacobson AM, Milley J, et
to
diabetes:
and adolescents.
Hillsdale, NJ: Lawrence Eribaum, 1992:133-52.
6. Garrison WT, McQuiston S. Chronic illness during childhood and
adolescence: psychological aspects. Newberry Park, Calif: Sage, 1989.
7. Johnson SB. Knowledge, attitudes, and behavior: correlates of health
in childhood diabetes. Clin Psychol Rev1984;4:503-24.
8. May B. Diabetes. In: Pitts M, Phillips K, eds. The psychology of
health: an introduction. New York: Routledge, 1991:214-30.
9. Ebata AT, Moos RH. Personal, situational, and contextual correlates
of coping in adolescence. J Res Adolesc 1994;4:99-125.
Downloaded from tde.sagepub.com at PENNSYLVANIA STATE UNIV on September 17, 2016