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Psycho-social stigma among type 1 diabetes

mellitus patients
ARTICLE JANUARY 2013
DOI: 10.7713/ijms.2012.0061

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2 AUTHORS:
Subhankar Chatterjee

Payel Biswas

R.G.Kar Medical College

R.G.Kar Medical College

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INDIAN JOURNAL OF MEDICAL SPECIALITIES 2013;4(1):55-58

Student Review Article

Psycho-social stigma among type 1 diabetes mellitus patients
Subhankar Chatterjee, Payel Biswas

Abstract
Although there are enormous talks regarding the pharmacological management of Type 1 Diabetes
Mellitus (T1DM), little is discussed about its psycho-sociological aspect. The psychological stigma of type
1 diabetes mellitus cant be over-emphasised. It affects mainly the patient and the family as a whole.
Frequent hypoglycaemic attacks and diabetic keto-acidosis hamper the childs learning processes. Lifelong administration of insulin, timely and restricted food habits and complications of diabetes impose
great difficulty in living normal life for patient. So, for optimum survival, psychological monitoring must
be done along with the medical treatment beginning from the diagnosis. Every child newly diagnosed with
type 1 diabetes mellitus should be evaluated by a diabetes team consisting of paediatric endocrinologists,
nurse educator, dietician, and mental health professional to provide specific education and support. The
parents must be extremely careful and supportive. Siblings must be ready to assist the patient. Regular
interaction between parents, nurses, doctors and the school authority must be assured for close monitoring.
The child must be encouraged to participate in the school and family activities. Above all, proper education
of self-care must be given to the child so that he/she can cope with his/her existing disease, maintain selfconfidence, ensure self-management and adapt with the life at large.
Key words: Diabetes mellitus; psychology; psychological stress; psychosocial factors.
Introduction
Type-1 Diabetes Mellitus, still a poor cousin of
Type-2 Diabetes Mellitus (T2DM), is the third
most common paediatric endocrine disease [1].
Type 1 diabetes mellitus is mainly an auto-immune
disorder where there is destruction of beta cells
of pancreas leading to absolute insulin deficiency
and necessitates intense insulin therapy to survive.
Proper treatment and care for a type 1 diabetes
mellitus patient include intensive medical therapy,
proper diet, regular health check-up, proper
nursing and last but not the least healthy parental
care. Although late, the community is beginning
to realise the ubiquitous nature of psychological
impact of type 1 diabetes mellitus, involving the
entire family, schools and society as a whole. This
article highlights the same.

Type 1 diabetes mellitus: is it really a stigmatising

condition?
Erving Goffman defined stigma as the process by
which the reaction of others spoils normal identity
[2]. Stigma in type 1 diabetes mellitus is still a least
vocal and unheard-of area of medical science. It is
so because two important aspects of a stigmatising
condition i.e., its visibility and controllability [3]both are apparently absent in type 1 diabetes
mellitus. However, there are strong evidences to
demolish this logic. First, an individual with type
1 diabetes mellitus must receive insulin from
external sources to prevent possible complications.
This creates a definite possibility for devaluation,
as dependence on medical treatment for survival
is undoubtedly a stigmatising attribute. Second,
the treatment regimen required to manage type 1

R.G. Kar Medical College & Hospital, Kolkata. India.

Corresponding Author: Subhankar Chatterjee, c/o Dr. T. J. Banerjee, Shantiniketan Apartment, Nabapally, Barasat, North-24 Paraganas,
Kolkata-700126, West Bengal, India.
Phone: +91-8296226909, E-mail:chatterjeeaspiresubhankar.92@gmail.com; benu_chatterjee.92@rediffmail.com
Received: 20-09-2012 | Accepted: 16-10-2012 | Published Online: 20-10-2012
This is an Open Access article distributed under the terms of the Creative Commons Attribution License (creativecommons.org/licenses/by/3.0)
Conflict of interest: None declared | Source of funding: Nil | DOI: http://dx.doi.org/10.7713/ijms.2012.0061

Indian Journal of Medical Specialities, Vol. 4, No. 1, Jan - Jun 2013

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Subhankar Chatterjee and Payel Biswas

diabetes mellitus includes actions, often noticeable

by others (e.g., administering insulin or eating
at specified times). In addition, the symptoms of
hypoglycaemia, an acute complication, are often
highly visible. Such visibility creates an increased
potential for stigmatisation and often associated
with poor metabolic control and adaptation.
Diagnosis of type 1 diabetes mellitus: early reaction
For the child and the family, the diagnosis of
diabetes can cause mental anguish evidenced
by grief responses, crisis reactions, outbursts of
temper, pessimism about the future [4-6]. Mother of
the suffering child may also be hunted by depression
and anxiety mainly due to guilt feeling and worry
about the childs future. With proper measures,
these normative responses tend to subside within
one year. But if persists, its a serious risk factor for
subsequent complications with metabolic control
and psychosocial adjustment [7].
Living with type 1 diabetes mellitus: Adherence
difficulties
Infants & Toddlers: Particularly in infancy,
severe hypo- or hyperglycaemia and diabetic ketoacidosis are associated with learning disabilities.
Particularly during this period, parents feel highly
stressed as the infants are unable to combat their
own problems.
School going children: School going children
with diabetes must contend with a range of issues
and feelings that vary with developmental stage.
Psycho-social reactions of children suffering from
diabetes include feeling different from peers, fear
of rejection, low self-esteem, insecurity related to
limited educational prospects, fear of restrictions
inflicted by the situation and anxiety about how
others will react to the illness, especially the
reactions of peer groups [8]. As a part of cultural
connotation, the child may experience unjustifiable
guilt due to a belief that his sufferings are punishment
for either his or his parents past sins and feels
insecure. The subsequent parental stress pushes the
child into a vicious cycle leading to even behavioural
disturbances. Various phenomenological studies
using conversational interview reveal that median
scores of anxiety, depression and total distress are
significantly higher in children with type 1 diabetes

56

mellitus indicating worse psychological adjustment

and those with higher HbA1c are at higher risk for
psychological maladjustment [9].
Adolescents and youth: Adherence difficulties
[5], anxiety, depression, eating disorders, higher
risk for obstructive sleep apnoea [10] and disturbed
subjective sleep quality are very frequent among
adolescents [7]. Adolescents with diabetes tend
to ignore their vulnerability to the potential
consequences of disease [11]. The desire for greater
independence is one of the barriers to compliance
identified by these adolescents.
Biochemical explanation of depressive disorders
in type 1 diabetes mellitus
Increasing evidence suggests that type 1 diabetes
mellitus and depression may be closely related
beyond these psychological connections, on a
physiological level [12]. Type 1 diabetes mellitus
is accompanied by altered levels of circulating
cytokines, such as interleukins, interferons, tumour
necrosis factor and other immune system signalling
molecules which influence mood. Recent evidence
also suggests that antibodies against glutamic acid
decarboxylase, the chief synthetic enzyme for GABA
(a neurotransmitter having role in depression), are
present in the serum of many patients with type 1
diabetes mellitus [12].
Intervention and Management
Proper treatment and care for a type 1 diabetes
mellitus patient include intensive medical therapy,
proper diet, regular health check-up, proper
nursing, healthy parental care and psychological
monitoring. Proper evaluation of psycho-social
responsibilities towards type 1 diabetes mellitus
patients is needed among the individuals involved
at each level of treatment, care and management
of the same.
Role of health-care-professionals: Ideally, every
child newly diagnosed with type 1 diabetes mellitus
should be evaluated by a diabetes team consisting
of a paediatric endocrinologist, a nurse educator,
a dietician, and a mental health professional
qualified to provide up-to-date paediatric-specific
education and support. Soon after the diagnosis,
they should provide key survival information only

Indian Journal of Medical Specialities, Vol. 4, No. 1, Jan - Jun 2013

Psycho-social stigma

and allow time for grieving. Insulin administration

and monitoring of blood glucose levels should be
carried out with the least discomfort possible, to
ease the psychological adjustment to such invasive
and potentially uncomfortable procedures. Routine
screening of psychosocial functioning, assessment
of hypoglycaemic unawareness and family coping
should be performed. In-depth education and
behavioural interventions are best offered in the
weeks and months following diagnosis.
Role of family: Type 1 diabetes mellitus necessitates
parents to take extensive responsibility for managing
the condition [13]. As part of the adjustment
process, the family is required to create a new
normal, which includes developing new priorities,
reorganising family responsibilities, renegotiating
child/adolescent and parent relationships in the
area of support and supervision, and formalising
structures to support the integration of new
routines [5]. Parents should work closely with their
childs schools, day-care centres, and work settings
with the support of the diabetes team to ensure
that their child is being included in all types of
activities. The close parental supervision necessary
for children with diabetes can lead to sibling rivalry
and jealousy. Parents must include the siblings in
the care regimen so that they do not experience
jealousy & also make them ready to assist when
parents are not present. In both cross-sectional and
longitudinal (lagged) analyses, multilevel modelling
showed that shared responsibility was consistently
associated with better psychological health, good
self-care behaviour, and good metabolic control
[14].
Self-care among adolescents: Although total
autonomy with diabetes self management is not a
reasonable goal for adolescents before attaining
adequate maturity, experts encourage some
level of ongoing parental involvement throughout
adolescence to develop higher degree of selfconfidence and an improved concept of self-worth
[15,16].
Role of school-authorities: It is important to
encourage school-aged children to attend school
regularly and to participate in school activities
and sports to facilitate the development of normal
peer relationships [5]. Considerations must be given
to appropriate teacher-pupil relationships so that

Indian Journal of Medical Specialities, Vol. 4, No. 1, Jan - Jun 2013

children with diabetes do not get singled out as

misfits in the classroom! All parents of children with
diabetes should be given allowance for frequent
visit to the school to discuss specific needs with
teachers, the principal, and, when available, the
school nurse.
To conclude, proper psychological counselling for
both the child and parents is a must in every stage
of treatment. Children and adolescents with high
self-esteem, competence and coping skills tend to
show better management of their diseases [17, 18].
The care of children and adolescents with diabetes
is especially important because these children are
the most vulnerable population and they require
both family and professional support in order to
become healthy and productive adults. Evidencebased psychosocial, behavioural, or psychiatric
interventions should be made available for
patients or families exhibiting conflict, disordered
communication,
behavioural
or
psychiatric
difficulties or adherence problems affecting
glycaemic control.
Key Points
Life-long
treatment
and
metabolic
complications attribute to the psycho-social
stigma of type 1 diabetes mellitus.
Psycho-social stigmatisations range from
isolation from peers to learning disabilities.
The family members particularly mother
experience tremendous amount of grief
responses and hunted by guilt feeling,
worry and anxiety about the childs future.
Proper psychological monitoring must
be blended with the pharmacological
treatment right after the diagnosis.
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