j. indian assoc. child adolesc. ment. health 2019; 15(1 ... · rivalry, and siblings may fear...
TRANSCRIPT
85
J. Indian Assoc. Child Adolesc. Ment. Health 2019; 15(1):85-109
Review article
Psychosocial issues in Type 1 Diabetes Mellitus: A review and proposal of a model for
evaluation and management in the Indian context
Sahithya BR, Vijaya Raman
Address for correspondence: Department of Psychiatry, 1st floor, St John’s Medical College
Hospital, Sarjapur Main Road, Koramangala, Bengaluru, 560034. Email id:
Abstract
Type 1 Diabetes Mellitus (T1DM) is a major public health challenge globally. Children with
diabetes face unique challenges as the impact of the illness reaches far beyond the physical
symptoms of the disease. Emotional distress and psychosocial impact on the quality of life of
these children complicates the effective management of their disease, which can lead to long
term complications. This paper provides an overview of the psychosocial issues in T1DM by
reviewing existing literature and summarizing evidence-based interventions. Based on the
current empirical literature, a model that takes various psychosocial issues into consideration is
proposed in order to provide better care to children with diabetes.
Key words: Type 1 Diabetes Mellitus, psychosocial issues, evaluation, management
Introduction
Type 1 diabetes mellitus (T1DM) also known as insulin-dependent diabetes mellitus is caused by
loss of insulin-secreting capacity due to selective autoimmune destruction of the pancreatic beta
cells [1]. Typically, it first appears in childhood or early adulthood. Diabetes is a growing
problem posing a major public health challenge globally [2]. T1DM has a bimodal presentation
86
for age of onset, with the first peak between 4 and 6 years of age; and second peak in early
adolescence [3].
T1DM is the most common form of diabetes in children and adolescents in most part of the
world [4], with approximately 50–60% of children diagnosed before the age of 15 years [5]. The
incidence of T1DM varies with age, gender, family history, and race [6]. Globally, the incidence
of T1DM is increasing at a rate of approximately 3% per year [7], particularly in children under
the age of 5 years [8]. Around 78,000 children under 15 years are estimated to develop T1DM
annually worldwide [9]. India accounts for most of the children with T1DM in South-East Asia,
with 3 new cases of T1DM/100,000 children aged 0–14 years [9]. However, the prevalence of
diabetes in India is variable, and range from 3.2 - 17.93 cases/100,000 children [10]. The
increasing incidence of T1DM is worrisome because it negatively affects the quality and
duration of life, mainly due to morbidity and mortality from its chronic complications.
The treatment goals for T1DM are simple and include maintaining near normal blood glucose
levels and avoiding long-term complications, however, it is a constant juggle between insulin
and maintaining an appropriate lifestyle [10]. While tight blood glucose control is paramount to
reduce the risk of diabetic complications, in practice it is very difficult to achieve. Despite the
considerable progress, glycemic control in children with T1DM remains suboptimal, thus placing
children at risk for developing long-term complications [11]. Short term complications of
diabetes include difficulties associated with hypoglycemia, ranging from tremor, confusion, and
lethargy, to stupor and seizures. Acute hyperglycemia can lead to polyuria, nocturnal enuresis,
weight loss, and risk for diabetic ketoacidosis, which can potentially cause coma and death [6].
In the long term, poorly controlled diabetes may lead to neuropathy and retinopathy, with
87
increased risk of heart disease, kidney disease, blindness and lower limb infections leading to
gangrene [12].
Psycho social Factors
It is important to look at psychosocial factors associated with chronic conditions like T1DM
because they affect symptom severity, management as well as treatment adherence. The
prevalence of psychosocial issues in children with T1DM is high, and these children are at risk
of decreased psychological wellbeing [13]. One study found the prevalence for mild, moderate
and severe psychosocial issues in diabetic children to be at 8.33%, 27.38% and 20.24%
respectively [14]. Psychosocial problems can result in nonadherence to medications, decreased
quality of life, lack of interest in managing disease, and poor dietary compliance, resulting in
poor glycemic control and long-term complications [15]. Psychological factors and metabolic
control have a bidirectional relationship. Psychosocial factors affect glycemic control indirectly,
via their influence on adherence behavior [16], or directly via stress which is associated with
changes in glucose regulation in diabetic patients [17]. Some of the psychosocial problems
consistently associated with T1DM are diabetes distress, co-morbid psychiatric disorders,
cognitive deficits resulting in poor scholastic performance, adherence related issues, family
issues and needle phobia. Untreated psychosocial issues can lead to increased physical
symptoms, cardiovascular complications and depression [13] and needs to be screened and
addressed at the earliest.
Diabetes Distress
Children with T1DM may suffer from stress caused by having diabetes. Diabetes distress refers
to quality of life issue due to a combination of medical and psychological burden, as diabetes is a
chronic and complex malady that creates emotional distress [18]. Children with high diabetes
88
distress show lower levels of satisfaction with life, self-esteem, and self-efficacy [19]. Diabetes
distress can influence diabetes management and treatment outcomes in an unfavorable way as
patients dealing with greater level of diabetes related emotional distress have lesser compliance
with anticipated treatment plan like adherence to dietary regimen, exercising on regular basis,
monitoring of blood glucose levels frequently, and taking medications as prescribed [20].
Intervening before symptoms of psychological distress start can prevent the development of the
diabetes distress [21].
Comorbid Psychiatric disorders
Children with T1DM are at a greater risk for emotional, behavioral and psychological difficulties
[22]. Young T1DM patients have higher prevalence of affective disorders [23]. Depression is the
most common psychiatric disturbance among diabetic children, following anxiety [24]. One
study found the prevalence of mild depression in T1DM youth to be at 14% while moderate to
severe depression at 8.6% [25]. Symptoms of depression are associated with an increased risk of
severe hypoglycemia, being hospitalized with diabetes complication, and poorer quality of life
[26]. In addition, diabetic children with emotional problems have more difficulties in disease
management than children with better psychological adjustment [24]. There is also increased
incidence of eating disorders among patients with T1DM [27]. The standardized mortality rate in
patient with concurrent T1DM and anorexia nervosa patients is 2.18 [28]. The high prevalence of
psychiatric disorders in children with T1DM increases the odds for repeat hospital admission for
diabetes [27]. This is because co-morbid psychiatric disorders result in poorer control of the
illness as such children are less likely to adhere to treatment regimens [29]. Hence, disturbed
children with diabetes are at risk for adverse physical and mental health outcomes. As
89
maladjustment in children negatively affects glycemic control and subsequent metabolic
functioning [6], psychosocial supports are crucial in managing children with T1DM.
Cognitive Deficits
T1DM is a key risk factor for cognitive deficits, and children with T1DM have mild cognitive
impairments [30]. T1DM may adversely affect children's verbal intelligence quotient, resulting
in a decreased full intelligence quotient [31]. Before diagnosis and treatment, children with
T1DM may have experience prolonged hyperglycemia; and post treatment, they are vulnerable
to blood glucose excursions, both hypoglycemia and hyperglycemia, putting these children at
risk for cognitive side effects. Children with longer duration of diabetes, earlier age of diabetes
onset have lower test scores in comprehension, abstract reasoning and intelligent quotient
compared to non-diabetics [32]. They tend to have significantly more school absences, and
although for most children, diabetes alone is not associated with lower academic performance,
poorer academic performance tended to occur in children with poorer diabetic control [33].
Hence children with T1DM need special clinical attention where their academics are concerned.
Adherence related issues
Diabetes presents unique issues for children as it requires strict adherence to daily treatment
tasks. Simple things, such as going to a birthday party, playing sports, or staying overnight with
friends or relatives need to be carefully planned. Diabetes management demands strict dietary
and exercise regimens, frequent blood glucose monitoring, and adherence to medications, but in
a developing child this can be a huge challenge [6]. This results in higher risk for reduced
physical, emotional, and social well-being in terms of quality of life [15]. As a result, diabetes in
children is associated with stress and distress for both the child and the family. Nonadherence is
tightly linked to suboptimal glycemic control, increasing morbidity, and risk for premature
90
mortality [34]. Hence, it is essential to instill routines in child's daily activities to increase the
likelihood of treatment adherence [35].
Family issues
Families play key role in the adjustment of children to diabetes; therefore, issues in family can
greatly influence glycemic control [36]. Family factors that predict poor glycemic control
include low family support, single parent, and family conflict [37]. Children who experience
high levels of family conflict show poor adherence to treatment [38]. Conflicts over diabetes
management may also lead to stressful parent-child relations. Stressors such as divorce, family
arguments, or abuse can lead to elevated blood glucose levels [39]. Dysfunctional family
interactions, authoritarian parenting, and diabetes-related family stress have been consistently
associated with worse glycemic control [40]. Authoritative parenting style, characterized by
warmth and structure, is associated with better adherence to the diabetes regimen; while, poor
communication skills and family conflict are associated with problems with adherence and
glycemic control [41]. Diabetes is stressful for both the children and their families. The presence
of a chronic pediatric condition is a recognized source of distress among family members, which
can lead to disruptions in intrafamilial relationships, family structure, and family cohesion [42].
Caregivers may feel that they need to be vigilant and constantly monitor their child’s diabetes
[43]. Parents often worry about long-term complications, and may have conflicts over
management, such as diet issues, poor adherence to treatment, and child’s resistance to the
painful process of injection, all of which influence the child’s glycemic control [40]. They fear
that their child will experience severe hypoglycemia, especially when it is associated with
adverse reactions like seizures or a loss of consciousness. They are extremely concerned about
how poor glycemic control is influencing their child’s physical growth and development; often
91
feel guilty for having transmitted the genetic components of diabetes to their child; and worry
that they have not done enough to manage the disease [44]. Parents also report feelings of
depression and anxiety, which may be precipitated by their guilt or worry about the child’s future
[41]. Also, the close parental supervision that children with diabetes demand can lead to sibling
rivalry, and siblings may fear developing diabetes themselves [44]. Hence, there is a need for
family intervention by a supportive health care team.
Needle phobia
Another common issue in children with T1DM is fear of self-injecting and self-testing. The
process of injecting and blood glucose testing through finger pricking can cause high levels of
distress [45]. Not only the child’s personal experiences, but parent's reactions to needles can also
play a role in child’s anxiety. Very few research studies are available on prevalence of needle
phobia in T1DM. One cross-sectional study reported that 32.7% children with T1DM having
multiple daily injections had needle fear [46]. Intense fear of self-injecting insulin can precipitate
psychological distress, poor adherence and compromise glycemic control [47]. Successful self-
management involves routine self-testing and self-injecting of insulin. As metabolic control may
be improved by reducing the fear of injection [48], screening for needle phobia is necessary.
Role of Mental Health Professionals
The care of children with T1DM involves complex procedures including daily blood glucose
testing, dietary monitoring, intensive insulin therapy and physical activity to maintain metabolic
control in the face of pancreatic failure. Not only do children with T1DM struggle with adhering
to a complex medical regimen and daily completion of multiple self-care behaviors, but they also
face a number of stressors and challenges which includes the impact of diabetes on social
interactions with family members, peers, and teachers; and the interference of symptoms such as
92
hypoglycemia with daily activities. Although children with diabetes are at a greater risk for
emotional and behavioral problems [49], psychological aspect of the disease is often missed with
most of the emphasis being given to the strict maintenance of blood glucose. As many of the
barriers to and facilitators of treatment adherence in pediatric diabetes are psychosocial in nature,
the child may need support from mental health professionals who can help the child and family
through the challenging times. Mental health aspect of diabetes management is being
increasingly recognized, and it is recommended that children with diabetes and their families are
given timely and ongoing access to mental health services as they may be experiencing
psychological issues that impact the management of diabetes.
Researchers have looked at role of psychologists in providing behavioral intervention as part of
multidisciplinary diabetes care, and have found that mental health professionals play significant
role in facilitating adherence behaviors [50]. It is therefore important that children diagnosed
with diabetes and their families undergo a psychosocial assessment and a psycho-education
session at diagnosis. A referral may be made to a mental health professional when there is: poor
adherence and resistance to treatment, issues with family, siblings and peers, limited social
support, academic difficulties, co-morbid psychiatric illness such as anxiety, depression, eating
disorders, behavioral problems, body image disturbances, and so on.
Psychosocial Evaluation
Psychosocial assessment, psycho-education and treatment are an ongoing process. Multi-
informant approach to the assessment of symptoms of psychological difficulty in children with
diabetes has been found to be of great value in management of psychosocial problems [26]. A
detailed evaluation of the child and family is the first step. American Diabetes Association [51]
recommends assessment of symptoms of diabetes distress, Comorbid psychiatric disorders and
93
cognitive deficits using appropriate standardized tools at the initial visit, at periodic intervals,
and also inclusion of caregivers and family members in this assessment. Life circumstances that
can affect physical and mental health outcomes, child’s strengths and difficulties, family issues,
parenting styles, sibling relationships, stressors, child’s temperament and coping styles should
also be incorporated in the assessment as they help plan an effective management. Interview with
the child will provide crucial information about how the child perceives the illness, locus of
control, impact of the disease on the child’s life, academics, peer relationships, family
relationships, and perceived support from various sources. However, to elicit such intimate
information it is important to establish good rapport with the child. Understanding the child’s
difficulties is requisite in planning management, and an individual treatment plan may be made
based on the outcome of the assessment.
Some of the assessments tools that may be used to screen children who may need psychosocial
support are:
� The Pediatric Quality of Life Inventory [52]: is an instrument designed to measure
health-related quality of life in children.
� Issues in Coping with IDDM- Parent/Child scale [53]: is used to measure perceptions and
issues related to their diabetes management.
� Diabetes Knowledge Scale - child version [54]: is a questionnaire to measure knowledge
about diabetes in children.
� Child Behavior Check List [55]: is a screening tool to assess for children’s behavioral and
emotional problems in children.
� The Revised Child Anxiety and Depression Scale [56]: is a self-report measure intended
to assess children's symptoms corresponding to anxiety and depression.
94
Management
American Diabetes Association [51] recommends that psychosocial problems be addressed as
soon as they are identified, and if an intervention cannot be initiated during the visit when the
problem is first identified, then a follow-up visit or referral to a qualified professional may be
scheduled during that visit. Management plan for children with T1DM will need to address
various issues, and include a complete psychoeducation to the child and all family members
regarding the cause, course and future management challenges, as well as clearing myths and
misconceptions. This will include addressing practical problems such as storage of insulin, and
deciding who will be responsible for injections, monitoring of diet, etc. Other concerns include
dealing with parental psychopathology if any, and ensuring parents do not overprotect or restrict
child’s activities. There is also a need to ensure some semblance of normalcy in child’s life by
not allowing diabetes to overshadow everything else.
Psychologists will need to work with the child, family, siblings and sometimes peers in order to
facilitate change. Behavioral change often fails when patients are coerced but succeeds when
practitioners work with patients to build discrepancy between their behaviors and aspirations,
and then support the patients as they contemplate and ultimately make change for their own
salient reasons [34]. It is also important for psychologists to look out for mental health issues
such as depression, anxiety and cognitive deficits. A number of techniques including behavioral
strategies, cognitive behavior therapy, family therapy, group therapy may be used depending on
the presenting complaints. Some of the common techniques used are:
Motivational interviewing
Motivational interviewing is one approach designed specifically to help facilitate health behavior
change [57]. It is a collaborative conversation style that elicits intrinsic motivation by guiding
95
patients to explore and resolve ambivalence about behavior change by evaluating their perceived
pros and cons of change in relation to their current lifestyle, and thereby strengthening
commitment to behavior change. Motivational interviewing has had promising results in short-
term, uncontrolled studies in children, with significant improvements in anxiety, positive well-
being, satisfaction, and belief that self-care mattered in control of diabetes [34].
Adherence intervention
Adherence interventions using a combination of educational, behavioral strategies and problem-
solving skills have been shown to promote adherence in children [58]. Working together with the
child to solve problems with adherence gives the counselor a chance to reinforce problem-
solving skills [59]. Health care provider team, in partnership with the child and caregivers, can
develop a personal diabetes plan for the child that puts a daily schedule in place to keep diabetes
under control. The plan helps the child follow a healthy meal plan, get regular physical activity,
check blood glucose levels, take medication as prescribed, and manage hyperglycemia or
hypoglycemia. Visual reminders and cues may also be used to aid the child. For example,
leaving medication where it is sure to be noticed, or leaving notes to themselves, or pairing
taking medications with other well-established behaviors such as eating meals or brushing teeth.
A major barrier to self-management and compliance is fear of needle. Children may be taught
techniques to reduce the pain during finger prick such as pricking the lateral aspect of the finger
and avoiding pricking the thumbs and index fingers or to utilize alternative testing sites for some
time [60]. Additionally, techniques such as distraction, hypnosis, systemic desensitization,
coping skills, combined cognitive behavior therapy, and relaxation techniques such as deep
breathing, have been found to help children with needle phobia [61] [62].
96
Family Intervention
Managing diabetes in children is most effective when the entire family gets involved. Family
involvement is an important predictive factor for glycemic control [40]. Participation of the
entire family in educational programs on disease management and psychotherapeutic programs
for stress management will help children deal with the stress of treatment and achieve desired
glycemic control, as parent’s behavior is a factor for creating independent and responsible
patients who can take care of their diabetes [40]. Diabetes education should involve the child as
well as family members. Families can be encouraged to share concerns with health care
providers to get their help in the day-to-day management of diabetes. Various researches have
acknowledged the importance of the family–patient construct [34]. Therefore, many behavioral
interventions have aimed at optimizing adherence and glycemic control in children with diabetes
by targeting the family unit. It is essential to maintain family support around diabetes
management tasks, as children of families who sustain parental involvement in diabetes
management have better outcomes [63]. Family communication, conflict resolution, and
problem-solving skills are critical elements of effective family management of diabetes in
children [64]. Interventions become successful when children benefit from understanding,
support, and skills of family members in a context that avoids diabetes-specific family conflict;
by assisting parents and children work on communication skills, problem solving, and
minimizing family conflict in relation to diabetes [34]. Moreover, parents value education from
health care professionals that would provide them with solutions to diabetes management
dilemmas [65]. Mental health professionals can support caregivers by helping them identify their
strengths and by providing affirmations and encouragement if their confidence for managing
their child’s diabetes decreases. Parents also need to be taught to be alert for signs of depression,
97
anxiety eating disorders; and seek appropriate treatment. Addressing parent’s fears, guilt and
sibling rivalry are also equally salient in management.
Peer Intervention
Peers can be a significant source of constructive support. Peer group intervention is aimed at
increasing diabetes knowledge and social support by teaching them how to be supportive, in
order to increase their positive influence on the child’s diabetes care regimen. Encouragement by
peers helps children perform diabetes related tasks which they had been afraid to do previously.
Talking with other children who have diabetes helps children feel less isolated and less alone in
having to deal with the demands of diabetes. They get an opportunity to discuss issues they share
in common that others in their peer group may not understand, and they can share solutions to
problems they have encountered. Often, these programs teach children how to deal with
increased exercise, reinforcing the fact that diabetes should not limit them in their ability to
perform strenuous physical activity. However, although assessment of peer support has received
some attention, there are limited studies that have examined the impact of peer support on
children’s diabetes management. In one pre-post trial where adolescents with diabetes and their
best friends participated in a group intervention, adolescents and their friends demonstrated
higher levels of knowledge about diabetes and support, as well as a higher ratio of peer to family
support, improved self-perception, and decreased diabetes-related conflict post intervention [66].
Recent research suggests that peer-based interventions could help manage diabetes, by increasing
knowledge, coping, quality of life, self- confidence, self-care, satisfaction with the perceived
social support, social skills, and diabetes-related conflicts which have a significant bearing on
compliance and management [67].
98
Special issues in India
Despite being the most common chronic disease in children and adolescents, T1DM has not
received the attention it requires in India. Many children die of undiagnosed diabetes or shortly
after diagnosis because of poor blood sugar control [68]. It has been found that T1DM is
encountered majorly in the under-privileged children [69], and most T1DM cases are dealt in
government hospitals as they offer free supply of insulin [70]. The wide disparities in
socioeconomic levels, educational background, and availability of diabetes care pose major
hurdles in the management of this disease in India [69]. Challenges in Indian population include
lack of awareness of the disease amongst general public, stigma, looking for a cure using native
treatments, and lack of information about packaged foods and nutritional needs of the child.
Ignorance may be due to low participation rates in educational programs, as India has one of the
lowest participation rates in educational problems [71]. Another concern is the lack of
accessibility to health services, especially in rural India leading to long distance travel to health
services. Barriers to care are at many levels, right from diagnosis to availability of trained
physicians, infrastructure, insulin, and psychosocial support. Although urban population has
better access to reliable screening methods and treatment; investigation facilities and
infrastructure are poor in rural areas. Insulin availability, acceptability, affordability and storage
are also major concerns with up to 80% patients lacking a good storage facility at home [69].
These issues may result in poor diabetes screening and non-adherence to diabetic management
[72]. There is also a wide variation in treatment across the country due to lack of standardized
treatment guidelines and protocols.
99
Proposed Psychosocial Intervention Model in T1DM
Psychosocial problems are well established and accepted as a significant contributor to symptom
severity and treatment adherence in children with diabetes. However, there is a lack of attention
given to psychosocial issues in management of diabetes in children in India. While, improved
access to care and better health outcomes for children with T1DM are desirable, there is no clear
consensus on how best to achieve these goals [11]. Most of the intervention studies are
conducted in Western countries and its applicability considering the unique challenges that are
usually encountered in the Indian context is not known due to dearth of randomized control trials
on effectiveness of such interventions.
Although importance of addressing psychosocial issues is recognized, there are no specific
guidelines or models available for screening and intervention for unique psychosocial issues in
children with T1DM in India. Furthermore, it is not known to what extent the pediatric health
care professionals identify and address psychosocial issues in children. Hence, simple and
practical guidelines that can be easily incorporated into routine clinical practice are the need of
the hour.
Based on the current empirical literature and guidelines issued in western countries [73], we
propose a model that takes various psychosocial issues into consideration in order to provide
holistic care to children with diabetes, and to prevent escalation of mental health issues by
addressing them at the earliest. The goal is to:
1. Promote screening and periodic assessment for all children diagnosed with T1DM for
early identification of psychosocial problems and referral to appropriate professionals
when they cannot be managed in primary care setting.
100
2. Help the child achieve a developmentally appropriate awareness of the nature of his or
her condition in order to increase treatment adherence.
3. Promote self-management through diabetes education.
4. Encourage parental involvement in order to build a strong child-caregiver management
unit, so that parents can serve as coaches, and help monitor their child's increasing
responsibility for self-management.
In order to meet the above-mentioned goals of diabetes education, treatment adherence and self-
management, we recommend following procedures:
1. Multidisciplinary Team: Management of children with T1DM requires a
multidisciplinary approach. In order to optimize the effectiveness of care and reduce the
risk of complications, it is critical that the diabetes care team include members with
appropriate training in clinical, educational, diet and lifestyle, as well as mental health
aspects of children with diabetes.
2. Diabetes Education: Diabetes Education may be provided following diagnosis of
diabetes which is considerate of child’s developmental level. Diabetes education must
address questions such as, what is diabetes, what are acceptable blood glucose levels,
what is insulin therapy and injection technique, and what is hypoglycemia and risks
associated with it. Ongoing diabetes education is recommended during subsequent
follow-ups. The diabetes education should also promote self-management by teaching
children to monitor blood glucose levels regularly, identifying symptoms of
hypoglycemia, to take medications as prescribed on time and to take the injections
themselves.
101
3. Nutrition education: Nutrition education is aimed to educate the child and family on
different types of food and its impact on the body, healthy eating guidelines, food
selection and preparation; and also address difficulties that may be encountered in
monitoring calorie intake, conflict or stress associated with food, eating patterns or blood
glucose control. A meal plan may be prepared that is age appropriate which not only
ensures proper nutrition for growth but also helps keep blood glucose levels in the target
range. Portion sizes and healthy food choices at meal and snack time should also be
discussed.
4. Physical activity Education: Children and their families must also be educated about
importance of regular physical activity. The child and their families must be assessed for
family lifestyle, current physical activity level and limitations, and must be educated
about insulin effects, benefits, risks and optimum levels of activity, so that they have
glycemic awareness and control before, during and after physical activity.
5. Addressing mental health issues: Psychologists, social workers and psychiatrists play an
integral role in the management of children with T1DM and their families. The child
may be screened for psychosocial issues and mental health difficulties at initial diagnosis
of diabetes, and may be periodically evaluated for mental health issues during follow-
ups. Issues such as needle phobia, depression, anger, anxiety, behavior problems, eating
issues or body image disturbances, and other mental health issues which are beyond the
scope o the physician may be addressed by them. Subtle issues which often go unnoticed
such as guilt and grief, bullying, low self-esteem, marital stress, family conflicts and
treatment adherence may also be addressed during therapy sessions. Another major
concern is cognitive deficits and academic decline. Children with T1DM require a
102
routine academic or cognitive screening, and when found positive, they may be further
evaluated through neuropsychological assessments. Such children may require
supportive measures within the school and at home.
Conclusion and Future Directions
T1DM is the most common endocrine-metabolic disorder in children worldwide, and has shown
an exponential rise in recent years. These children face a lifetime of diabetes ahead. The impact
of the illness reaches far beyond the physical symptoms of the disease. Often the emotional
distress, psychiatric comorbidity, and psychosocial impact on the quality of life of these children
complicates the effective management of their disease, but may remain hidden for years before
clinicians recognize the extent to which the psychosocial and behavioral components of diabetes
are impacting both the course and prognosis of the disease.
In India, the availability of psychological support is quite low for patients with T1DM [13],
which may be attributed to lack of awareness of such services, or lack of effective referral
systems. Hence structured programs involving diabetes awareness and patient education are
required. Printed educational materials such as videos and booklets with illustrations may be
developed in regional languages to improve knowledge and adherence to treatment. It is
imperative that mental health professionals become more interdisciplinary, familiar with larger
health care culture, willing to expand their skill sets, and collaborative with other health
disciplines both from a patient-care and a larger advocacy perspective [74].
Anganwadi workers who have been a bridge between the rural population and doctors, have been
underutilized in management of children with diabetes. With adequate training, Anganwadi
workers can help combat the current diabetes epidemic in India. An optimal treatment plan
requires paying attention to every nuance of a complex condition like T1DM, in order to enable
103
individuals to manage their condition without experiencing diminished quality of life [75].
Hence, there is a need to develop interventions that consider various factors such as cultural
influences, personal, family, and community resources, and provide a tailor-made care that goes
along with the lifestyle of the individual, as such interventions are more likely to be successful
[76].
Going forward, crucial roles for psychologists will be to adopt and advocate a public health
perspective, to investigate efficacious interventions which may be easily implemented in routine
pediatric diabetes care, and to develop strategies to train mental health providers, Anganwadi
workers and medical practitioners to evaluate and treat common psychosocial issues that impact
children with T1DM. This integration of psychosocial care and ensuring access to services will
greatly benefit the children with T1DM and their families.
Conflict of interest: None declared
References
1. Eisenbarth GS. Type I diabetes mellitus. N Engl J Med 1986, 314:1360-1368.
2. Hackett RA, Steptoe A. Psychosocial factors in diabetes and cardiovascular risk.
CurrCardiol Rep 2016, 18:95.
3. Felner EI, Klitz W, Ham M, Lazaro AM, Stastny P, Dupont B, White PC. Genetic
interaction among three genomic regions creates distinct contributions to early‐and
late‐onset type 1 diabetes mellitus. Pediatr Diabetes 2005, 6:213-220.
4. Soltesz G, Patterson CC, Dahlquist G. Worldwide childhood type 1 diabetes incidence–
what can we learn from epidemiology? Pediatr Diabetes 2007, 8:6-14.
5. Giannini C, Mohn A, Chiarelli F. Growth abnormalities in children with type 1 diabetes,
juvenile chronic arthritis, and asthma. Int J Endocrinol 2014, 2014:265954.
6. Fritsch SL, Overton MW, Robbins DR. The interface of child mental health and juvenile
diabetes mellitus. PediatrClin North Am 2015, 38:59-76.
104
7. Andrade CJDN, Alves CD. Influence of socioeconomic and psychological factors in
glycemic control in young children with type 1 diabetes mellitus. J Pediatr (Rio J) in
press.
8. Patterson CC, Dahlquist GG, Gyurus E, Green A, Soltesz G. Incidence trends for
childhood type 1 diabetes in Europe during 1989–2003 and predicted new cases 2005–20:
a multicentre prospective registration study. Lancet 2009, 373:2027-2033.
9. Aguiree F, Brown A, Cho NH, Dahlquist G, Dodd S, Dunning T, Hirst M, Hwang C,
Magliano D, Patterson C. IDF Diabetes Atlas - 6th edition. Brussels: International
Diabetes Federation; 2013.
10. Das AK. Type 1 diabetes in India: Overall insights. Indian J Endocrinol Metab 2015,
suppl 19: S31.
11. Shulman R, Palmert MR, Daneman D. Glycemic control in Brazilian youth with type 1
diabetes. J Pediatr (Rio J) 2009, 85:467-468.
12. Carr A. The handbook of child and adolescent clinical psychology: A contextual
approach. London: Routledge; 2015; pg 569.
13. Chew BH, Shariff-Ghazali S, Fernandez A. Psychological aspects of diabetes care:
Effecting behavioral change in patients. World J Diabetes 2014, 5: 796-808.
14. Khandelwal S, Sengar GS, Sharma M, Choudhary S, Nagaraj N. Psychosocial illness in
children with Type 1 Diabetes Mellitus: Prevalence, pattern and risk factors. J Clin Diagn
Res 2016, 10: 5-8.
15. Gupta N, Bhadada SK, Shah VN, Mattoo SK. Psychological aspects related to diabetes
mellitus. J Diabetes Res 2016, 2016: 7276403.
16. Cohen DM, Lumley MA, Naar-King S, Partridge T, Cakan N. Child behavior problems
and family functioning as predictors of adherence and glycemic control in economically
disadvantaged children with type 1 diabetes: a prospective study. J Pediatr Psychol 2004,
29:171-184.
17. Beardsley G, Goldstein MG. Psychological factors affecting physical condition:
endocrine disease literature review. Psychosomatics 1993, 34: 12-19.
18. Tareen RS, Tareen K. Psychosocial aspects of diabetes management: dilemma of diabetes
distress. Transl Pediatr 2017, 6: 383- 396.
105
19. Powers MA, Richter SA, Ackard DM, Craft C. Diabetes distress among persons with
type 1 diabetes: associations with disordered eating, depression, and other psychological
health concerns. Diabetes Educ 2017, 43: 105-113.
20. Delahanty L, Grant RW, Wittenberg E, Bosch JL, Wexler DJ, Cagliero E, Meigs JB.
Association of diabetes‐related emotional distress with diabetes treatment in primary care
patients with Type 2 diabetes. Diabet Med 2007, 24:48-54.
21. Hood KK, Iturralde E, Rausch J, Weissberg-Benchell J. Preventing Diabetes Distress in
Adolescents with Type 1 Diabetes: Results One Year After Participation in the STePS
Program. Diabetes Care 2018, 41: 1623-1630.
22. Reynolds KA, Helgeson VS. Children with diabetes compared to peers: depressed?
Distressed? A meta-analytic review. Ann Behav Med 2011, 42: 29-41.
23. Sinnamon GC, Caltabiano M, Baune BT. Differentiating disordered affect in children and
adolescents with type 1 diabetes. J Affect Disord2013, 147:51-58.
24. Al‐Khurinej A. Emotional and behavioral problems among diabetic children. Digest of
Middle East Studies 2007, 16:1-11.
25. Lawrence JM, Standiford DA, Loots B, Klingensmith GJ, Williams DE, Ruggiero A,
Liese AD, Bell RA, Waitzfelder BE, McKeown RE. Prevalence and correlates of
depressed mood among youth with diabetes: the SEARCH for Diabetes in Youth study.
Pediatrics 2006, 117:1348-1358.
26. Kristensen LJ, Birkebaek NH, Mose AH, Hohwü L, Thastum M. Symptoms of
emotional, behavioral, and social difficulties in the Danish population of children and
adolescents with type 1 diabetes–results of a national survey. PloS one 2014, 9: e97543.
27. Garrison MM, Katon WJ, Richardson LP. The impact of psychiatric comorbidities on
readmissions for diabetes in youth. Diabetes Care 2005, 28: 2150-2154.
28. Nielsen S, Emborg C, Molbak AG. Mortality in concurrent type 1 diabetes and anorexia
nervosa. Diabetes care 2002, 25:309-312.
29. Northam EA, Matthews LK, Anderson PJ, Cameron FJ, Werther GA. Psychiatric
morbidity and health outcome in Type 1 diabetes–perspectives from a prospective
longitudinal study. Diabet Med 2005, 22:152-157.
30. Naguib JM, Kulinskaya E, Lomax CL, Garralda ME. Neuro-cognitive performance in
children with type 1 diabetes - meta-analysis. J PediatrPsychol2009, 34:271-282.
106
31. Ni J, Xin Y. Cognitive function in children with type 1 diabetes. Zhongguo Dang Dai
ErKeZaZhi2012, 14:571-574.
32. Shehata G, Eltayeb A. Cognitive function and event-related potentials in children with
type 1 diabetes mellitus. J Child Neurol2010, 25: 469-474.
33. McCarthy AM, Lindgren S, Mengeling MA, Tsalikian E, Engvall JC. Effects of diabetes
on learning in children. Pediatrics 2002, 109: e9.
34. Borus JS, Laffel L. Adherence challenges in the management of type 1 diabetes in
adolescents: prevention and intervention. Curr Opin Pediatr 2010, 22:405-411.
35. Greening L, Stoppelbein L, Konishi C, Jordan SS, Moll G. Child routines and youths’
adherence to treatment for type 1 diabetes. J PediatrPsychol2006, 32:437-447.
36. Kim H, Elmi A, Henderson CL, Cogen FR, Kaplowitz PB. Characteristics of children
with type 1 diabetes and persistent suboptimal glycemic control. J Clin Res Pediatr
Endocrinol 2012, 4:82-88.
37. Neylon OM, O'Connell MA, Skinner TC, Cameron FJ. Demographic and personal factors
associated with metabolic control and self‐care in youth with type 1 diabetes: a
systematic review. Diabetes Metab Res Rev 2013, 29:257-272.
38. Miller-Johnson S, Emery RE, Marvin RS, Clarke W, Lovinger R, Martin M. Parent-chld
relationships and the management of insulin-dependent diabetes mellitus. J Consult
ClinPsychol1994, 62:603-610.
39. Dutour A, Boiteau V, Dadoun F, Feissel A, Atlan C, Oliver C. Hormonal response to
stress in brittle diabetes. Psychoneuroendocrinology 1996, 2:525-543.
40. Tsiouli E, Alexopoulos EC, Stefanaki C, Darviri C, Chrousos GP. Effects of diabetes-
related family stress on glycemic control in young patients with type 1 diabetes:
systematic review. Can Fam Physician 2013, 59:143-149.
41. Frank MR. Psychological issues in the care of children and adolescents with type 1
diabetes. Paediatr Child Health 2005, 10:18-20.
42. Mellin AE, Neumark-Sztainer D, Patterson JM. Parenting adolescent girls with type 1
diabetes: parents' perspectives. J PediatrPsychol2004, 29:221-230.
43. Nabors L, Bartz J. Type I diabetes in children: Facilitating adherence to medical
regimens. In Type 1 Diabetes. Edited by Escher AP, Li A. Intech Open; 2013: 434-445.
107
44. Guthrie DW, Bartsocas C, Jarosz-Chabot P, Konstantinova M. Psychosocial issues for
children and adolescents with diabetes: Overview and recommendations. Diabetes Spectr
2003, 16:7-12.
45. Steil GM, Alexander J, Papas A, Langer M, Modi BP, Piper H, et al. Use of a continuous
glucose sensor in an extracorporeal life support circuit. J Diabetes Sci Technol 2011,
5:93-98.
46. Cemeroglu A, Can A, Davis A, Cemeroglu O, Kleis L, Daniel M, et al. Fear of needles in
children with type 1 diabetes mellitus on multiple daily injections and continuous
subcutaneous insulin infusion. Endocr Pract 2014, 21:46-53.
47. Fu AZ, Qiu Y, Radican L. Impact of fear of insulin or fear of injection on treatment
outcomes of patients with diabetes. Curr Med Res Opin 2009, 25:1413-1420.
48. Berlin I, Bisserbe JC, Eiber R, Balssa N, Sachon C, Bosquet F, et al. Phobic symptoms,
particularly the fear of blood and injury, are associated with poor glycemic control in
type I diabetic adults. Diabetes Care 1997, 20:176-178.
49. National Institute for Health and Care Excellence: NICE Guideline NG17 - Type 1
diabetes in adults: diagnosis and management. 2015. Retrieved from
https://www.nice.org.uk/guidance/ng17
50. Hilliard ME, Powell PW, Anderson BJ. Evidence-based behavioral interventions to
promote diabetes management in children, adolescents, and families. Am Psychol 2016,
71:590-601.
51. Young-Hyman D, De Groot M, Hill-Briggs F, Gonzalez JS, Hood K, Peyrot M.
Psychosocial care for people with diabetes: a position statement of the American
Diabetes Association. Diabetes Care 2016, 39:2126-2140.
52. Varni JW, Burwinkle TM, Jacobs JR, Gottschalk M, Kaufman F, Jones KL. The PedsQL
in type 1 and type 2 diabetes: reliability and validity of the Pediatric Quality of Life
Inventory Generic Core Scales and type 1 Diabetes Module. Diabetes care 2003, 26:631-
637.
53. Kovacs M, Brent D, Steinberg TF, Paulauskas S, Reid J. Children's self-reports of
psychologic adjustment and coping strategies during first year of insulin-dependent
diabetes mellitus. Diabetes Care 1986, 9:472-479.
108
54. Beeney LJ, Dunn SM, Welch G. Measurement of diabetes knowledge: the development
of the DKN scales. In Handbook of psychology and diabetes. Edited by Bradley C.
Amsterdam: Harwood Academic Publishers; 2001:159-189.
55. Achenbach TM. Manual for Child Behavior Checklist. Burlington: University of
Vermont; 2013.
56. Chorpita BF, Moffitt CE, Gray J. Psychometric properties of the Revised Child Anxiety
and Depression Scale in a clinical sample. Behav Res Ther 2005, 43:309-322.
57. Powell PW, Hilliard ME, Anderson BJ. Motivational interviewing to promote adherence
behaviors in pediatric type 1 diabetes. Curr Diab Rep 2014, 14:531.
58. Graves MM, Roberts MC, Rapoff M, Boyer A. The efficacy of adherence interventions
for chronically ill children: a meta-analytic review. J PediatrPsychol2009, 35:368-382.
59. Taddeo D, Egedy M, Frappier JY. Adherence to treatment in adolescents. Paediatr Child
Health 2008, 13:19-24.
60. Al Hayek AA, Robert AA, Babli S, Almonea K, Al Dawish MA. Fear of self-injecting
and self-testing and the related risk factors in adolescents with type 1 diabetes: a cross-
sectional study. Diabetes Ther 2017, 8:75-83.
61. Rzeszut JR. Children with diabetes: the impact of fear of needles. J Pediatr Nurs 2011,
26:589-592.
62. Birnie KA, Noel M, Chambers CT, Uman LS, Parker JA. Psychological interventions for
needle-related procedural pain and distress in children and adolescents. Cochrane
Database of Systematic Reviews 2018, 10: CD005179.
63. Wysocki T, Taylor A, Hough BS, Linscheid TR, Yeates KO, Naglieri JA. Deviation from
developmentally appropriate self-care autonomy: association with diabetes outcomes.
Diabetes Care 1996, 19:119-125.
64. Ashraff S, Siddiqui MA, Carline TE. The psychosocial impact of diabetes in adolescents:
A review. Oman Med J 2013, 28:159-162.
65. Sullivan-Bolyai S, Knafl K, Deatrick J, Grey M. Maternal management behaviors for
young children with type 1 diabetes. MCN Am J Matern Child Nurs2003, 28:160-166.
66. Greco P, Pendley JS, McDonell K, Reeves G. A peer group intervention for adolescents
with type 1 diabetes and their best friends. J PediatrPsychol2001, 26:485-490.
109
67. Kazemi S, Parvizy S, Atlasi R, Baradaran HR. Evaluating the effectiveness of peer-based
intervention in managing type I diabetes mellitus among children and adolescents: A
systematic review. Med J Islam Repub Iran 2016, 30: 1032-1045.
68. Kumar KP, Shah N, Viswanathan V, Sarda A, Chugh S, Dinakaran P. Best practices from
changing diabetes in children India. J Social Health Diabetes 2016, 4:137-140.
69. Kumar KM, Saboo B, Rao PV, Sarda A, Viswanathan V, Kalra S, et al. Type 1 diabetes:
Awareness, management and challenges: Current scenario in India. Indian J
EndocrMetab 2015, 19:S6-S8.
70. Amutha A, Mohan V. Diabetes complications in childhood and adolescent onset type 2
diabetes—a review. J Diabetes Complications 2016, 30:951-957.
71. Nicolucci A, Kovacs Burns K, Holt RI, Comaschi M, Hermans N, Ishi H, et al. Cross-
national benchmarking of diabetes-related psychosocial outcomes for people with
diabetes. Diabet Med 2013, 30:767-777.
72. Kaveeshwar SA, Cornwall J. The current state of diabetes mellitus in India. The
Australas Med J 2014, 7:45-48.
73. Queensland Government. The Best Practice Guidelines for the Management of Type 1
Diabetes in Children and Adolescents. Brisbane: Queensland Health; 2002.
74. Johnson SB, Marrero D. Innovations in healthcare delivery and policy: Implications for
the role of the psychologist in preventing and treating diabetes. Am Psychol 2016,
71:628-637.
75. Naughton MJ, Ruggiero AM, Lawrence JM, Imperatore G, Klingensmith GJ, Waitzfelder
B, et al. Health-related quality of life of children and adolescents with type 1 or type 2
diabetes mellitus: SEARCH for Diabetes in Youth Study. Arch Pediatr Adolesc Med
2008, 162:649-657.
76. Kahn R, Anderson JE. Improving diabetes care: the model for health care reform.
Diabetes Care 2009, 32:1115-1118.
Sahithya BR, PhD Scholar, Vijaya Raman, Professor of Clinical Psychology, Department of
Psychiatry, St. John’s National Academy of Health Sciences, Bangalore