Abstract

Diabetes is a typical example of a chronic disease that the whole family must learn to live
with, since it affects the lifestyle of each family member and the family organization, especially
when the one diagnosed with diabetes is the child. The aim of this study was to identify the
changes that mothers of children with diabetes pass through in terms of parental stress, couple
satisfaction and health perception by comparing them with mothers of healthy children.
These results show some changes in the psycho-socio-relational registry of mothers of
children with diabetes, changes that need to be known to be taken into account and to initiate
support and intervention programs for disease acceptance and coping to the new conditions of
life imposed on the family by the childs condition.
Key words: diabetes mellitus, parental stress, mothers.
1. Introduction
According to the International Diabetes Federation the number of people with diabetes in
Romania is 1,351,400 (IDF Diabetes Atlas 4 th ed, 2009). The estimated number of adults living
with diabetes worldwide has soared to 366 million, representing 8.3% of the global adult
population. This number is projected to increase to 552 million people, or 9.9% of adults, by
2030 which equates to approximately three more people with diabetes every 10 seconds. (IDF
Diabetes Atlas 5th ed., 2011). The incidence of Type1 diabetes in children aged less than 14 years
has also increased over the years. Between 1990 and 1994 this increase was 2.4% and between
1995 and 1999 it was slightly higher at 3.4% (DIAMOND Project Group, 2006).
The economic impact of diabetes is very strong. Only In 2007, U.S. diabetes treatment
alone cost 174 billion dollars (Pazdro, Burgess, 2010). In European countries estimates of the
costs caused by diabetes range between 6 and 14% of the total allocated health budget. This
includes both direct costs (expenses resulting from screening, diagnosis, care, prevention,
research) and indirect costs (decreased productivity as a consequence of sick leave, disability or
death before retirement) (Triplit, Charles, Reasmer and Isley, 2005).
Diabetes is a typical example of a chronic disease that the whole family must learn to live
with, since it affects the lifestyle of each family member and the family organization. Everyday
life, eating habits and even holiday planning must be changed and rearranged depending on
patient treatment especially when the patient is a child. Professional and social issues must also
take into account the limitations imposed by diabetes.
Many studies have tried to identify parental behaviour relating to dietary adherence and
metabolic control in young children and adolescents with insulin-dependent diabetes mellitus,
and to understand the interrelationships among the variables of parental behaviour, adherence to
blood glucose monitoring, and glycaemic control. Such variables as parental involvement
(Anderson B, Ho J, Brackett J, Finkelstein D, Laffel L., 1997), authoritative nonhelpless

parenting style (Davis et al., 2001 and Shorer et all., 2011), family communication and conflict
resolution (Wysocki, 1993) supportive parental style and parental coping (Graca Pereira et al.,
2011), family structure (one- vs. two-parent household) (Grabill et al, 2010) have been found to
predict better glycaemic control and adherence in the child. The interest regarding educating
parents to support and care for their children when they are diagnosed with diabetes mellitus is
also illustrated by the initiative of American Diabetes Association to publish a book designed
specifically to help parents deal with these additional responsibilities.
Guide to Raising a Child with Diabetes, by Jean Betschart Roemer (2011), now in its
third edition, which teaches parents about adjusting insulin dosage so that kids can still eat their
favourite foods, how to help the child to accept insulin injections, developing a meal plan for the
whole family and transitioning to adult care. This research on the family's role in diabetes
management examines the problem in terms of the effects of parental attitudes toward the disease
and treatment plan on the child. This involves a linear model of family functioning where
influences are described in only one direction: from the parents to the child. Systemic Family
theory considers the family as a system of interdependent parts in which each member of the
family is seen as influencing and being influenced by other members. So the parents are also
influenced by their childrens illness. When a child is diagnosed with Type 1 Diabetes Mellitus
it is the parents who will have to take care of the treatment to a great extent. This new parental
responsibility can lead to stress and changes in the family structure for many years that are not
decreasing even when the child grows up and the parents must gradually hand over the
responsibility to the child. There is limited knowledge of how parents are influenced over time.
The parents of children diagnosed with diabetes not only have to cope with the fact that
their children have been diagnosed with a chronic lifelong illness, but also have to overcome
their sense of grief (Bowes, Lowes, Warner, Gregory, 2008). Parents feel sad and guilty, helpless
facing the disease and unconfident of their ability to cope with the situation (Lowes, Gregory,
Lyne, 2005), they have significantly poorer quality of life in respect of their physical health,
psychological health and general well-being (Bhadada, Grover, Kumar, Bhansali, Jaggi, 2011).
Currently, in Romania, the only treatment provided for people with diabetes is the basic
one, that includes medication, diet, physical exercises and medical advice, with the patients
mental quality of life and especially the influence of the disease on their family being neglected.
Due to the increased incidence of this disease, we believe it important to identify the most
appropriate therapy methods, both medical and psychological, that can optimize the physical and
mental health status, disease management and not least the life quality of patients with diabetes
and of their families as a whole.
While there is a growing interest in psychological issues in diabetes, it is important to
focus also on parents and caregivers, to identify the changes and problems they are passing
through in terms of stress, health perception and couple satisfaction. This objective is important
especially in such countries as Romania where there is a low general level of interest in the
psychological wellbeing of the parents of children diagnosed with diabetes. In Romania there are
no especially designed services to help them and the educational programs developed by doctors
are focused simply on treatment and metabolic control.

2. Aims and objectives

The aim of this study was to identify the changes that mothers of children with diabetes
pass through in terms of parental stress, couple satisfaction and health perception by comparing
them with mothers of healthy children.
The specific objectives were:
To examine whether there are differences regarding health perceptions between
mothers of children diagnosed with diabetes and those of healthy children.
To explore the differences between mothers of diabetic children and those of
healthy children regarding couple satisfaction.
To look for any evidence that mothers of diabetic children have higher levels of
parenting stress than mothers of healthy children.
3. Design and methods
A quantitative study was carried out at a Paediatric Hospital providing services to a major
area of Western Romania.
The following instruments were used:
1. Parenting Stress Index the 3ed edition (Abidin, 1995)
The questionnaire was developed by Richard R. Abidin. The purpose of the 120-item PSI
is to produce a diagnostic profile of perceived child and parent stress. The PSI was developed
based on the theory that total parental stress is a function of child and parent characteristics, as
well as situational variables. It contains 13 sub-scales within major domains: total stress, child
domain, parent domain. The total stress domain, which measures the level of stress in the parentchild relationship, is comprised of the child and parent domains. The child domain has six
subscales that measure the childs distractibility/hyperactivity, adaptability, reinforcement of the
parenting experience, demandingness, mood, and acceptability. The remaining seven subscales
make up the parent domain and measures: competence, isolation, attachment, health, feeling of
role restriction, depression, and spousal support. Internal consistency (Cronbachs alpha) for the
PSI sub-scales ranged from .70 to .83 in the Child Domain, .70 to .84 in the Parent Domain, and
was greater than .90 for the two domains and the Total Stress scale.
2. Dyadic Adjustment Scale, developed by Graham B. Spanier.
The instrument includes 32 items and was designed to assess relationship quality as
perceived by married couple, is also a general measure of satisfaction in the couples intimate
relationship by using total scores. This instrument measures four aspects of relationship: dyadic
satisfaction (DS), dyadic cohesion (DC), dyadic consensus (DCON) and emotional expression
(EE). The scale has good internal consistency with alpha of .96. Subscales have the following
consistency: SD = .94, DC = .81, DCON = .90, and .73, EE = .73.
3.The Multidimensional Health Questionnaire (MHQ) developed by W. E. Snell and G.
Johnson in 1997 which consists of 20 health-oriented subscales, each containing five items
(Health Anxiety, Health-Efficacy, Health Consciousness, Motivation to Avoid Unhealthiness,

Chance-Luck Health Control, Health Preoccupation, Health Assertiveness, Health ExpectationsOptimism, Health Illness Self-Blame, Health Monitoring, Motivation for Healthiness, Health
Illness Management, Health Esteem, Health Satisfaction, Powerful-Other Health Control, Health
Self-Schemata, Health Status, Health Illness Prevention, Health Depression, Internal Health
Control ). Good reliability in the .7 to .8 range has been established for this measure (Snell &
Johnson, 1997).
4. Participants
The participants were:
a group of 31 mothers of children diagnosed with type 1 diabetes for more than 1
year, under treatment and with a good glycaemic control. Children of these
women are aged between 3 and 12. This group represents the study group.
Participants in the current study were recruited from two outpatient paediatric
specialty clinics in Timisoara, Romania. Eligibility requirements were: (1) parent
of a young child (age 312) with Type 1 Diabetes; (2) childs diagnosis > 12
months; (3) absence of any co-morbid medical or developmental condition.
a group of 31 mothers whose children are physically healthy and are also aged
between 3 and 12. This was the control group.
5. Results
Group comparisons were made using independent t test to compare differences between
means on the total stress scores, health perception and couple satisfaction. Differences were also
evaluated regarding the subscales of each dimension. The level of parenting stress, couple
satisfaction and health perception reported by mothers of healthy children and those with
diabetes were compared using the above mentioned analysis methods.
Parenting stress and diabetes
The differences between mothers of children with diabetes and those of healthy children
regarding parenting stress proved to be significant and are manifest in both children and parent
domains.
Results revealed significant differences between the groups regarding parental stress

Graph 1. Difference between samples regarding parental stress

As shown in the graph significant statistical differences between mothers of children with
diabetes and those of healthy children were recorded in parental stress level, t (60) = 4.87, p < .
01. These results were also supported by the effect size indicating a big effect r2 = .28 of the
difference statistically in the favour of mothers of children with diabetes. Differences were also
identified in 10 of the 13th subscales of child and parent domains. This means that mothers of
children with diabetes compared with those of healthy children have higher levels of parental
stress generated by
children characterized with higher level of hyperactivity t(49.94) = 3.66, p< .01, r2 = .
21, adaptability t(60) = 3.84, p< .01, r2 = .196, demandingness t(53,745) = 5.11, p< .01,
r2 = .32, mood t(47,672) = 4,39, p< .01, r2 = .28 and acceptability t(52,290) = 2,752,
p< .01, r2 = .12.
parent characteristics such as competence (60) = 4,120, p< .01, r2 = .22, isolation
t(54,215) = 3,27, p< .02, r2 = .16, feelings of role restriction t(60) = 4,44, p< .01, r2 = .
24, depression t(60) = 3,94, p< .01, r2 = .20 and health t(60) = 3,98, p< .01, r2 = .20.
It is important to note that the observed effect size for the difference in parenting stress
among these parents is a large effect except for the subscale of child acceptability where the
observed effect size is small, although the difference is still statistically significant.
Subscales with no significant statistical differences are parent reinforcement,
attachment and husband/wife.

Table1. Parental Stress Index stress data

Parental stress
Hyperactivity
Adaptability
Demandingne
ss
Mood
Acceptability
Competence
Isolation
Feelings of
role restriction
Depression
Health

Mothers of children with diabetes

Standard
min
max
mean
deviatio
n
189
367
273,13
50,97
19
37
25,74
4,38
16
43
28,93
7,01

Mothers of healthy children

mean
Standard
min
Max
deviation
148
15
13

314
28
33

217
22,35
22,61

44,34
2,70
5,91

17

36

26,25

6,46

11

28

19,00

4,53

7
8
17
6

24
31
52
28

14,13
17,12
35,74
16,45

4,44
7,00
8,82
5,77

5
7
17
6

15
24
38
22

10,09
12,96
27,71
12,29

2,53
4,67
6,32
4,11

13

32

23.41

4.51

28

18.03

5.02

12
7

43
21

26,87
14,13

6,55
3,60

9
6

36
16

20,48
10,80

6,19
2,94

Health perception and diabetes

Regarding health perception of mothers we found statistically significant differences only
regarding the Chance-Luck Health Control subscale. Mothers of children with diabetes consider
to a greater extent than do those of healthy children that health can be controlled by luck or
chance (t (60) = 2.03, p < .05, r2 = .06). Although statistically significant this difference is small
according to the effect size.
Table2. Multidimensional Health Questionnaire health control by chance or luck data

Parental stress

Mothers of children with diabetes

Standard
min
max
mean
deviatio
n
2
16
9,90
3,94

Mothers of healthy children

mean
Standard
min
max
deviation
1

15

8,03

3,29

Graph2. Difference between samples regarding health perception

Regarding the other Multidimensional Health Questionnaire scales results did not show
statistically significant differences, there were no clear differences between mothers whose
children are suffering from diabetes and those whose children are physically healthy. Moreover
there are scales with statistically similar results; the significance of the independent t test was
very low. These are related to health consciousness, self-blame for health and health monitoring.
For the last of these the similarity of the results of the two groups is very high, t (48,662) = .06,
where p> .90 (p = .95), and the magnitude of the difference is practically non-existent r 2 = 0.00,
so 0%.
Couple satisfaction and diabetes
Results show that there are no statistically significant differences between the two
samples either regarding couple satisfaction or the in the four subscales of the Dyadic
Adjustment Scale. Mothers of children with diabetes have a similar perception on couple
satisfaction compared with mothers of healthy children.
Table3. Couple satisfaction data
Min

Max

Standard
Deviation

Mean

Sig(1
tailed)

healthy

with
diabete
s

healthy

with
diabetes

healt
hy

49

48

41.81

41.42

5.78

5.53

.27

.79

23

23

18.74

17.84

3.57

3.32

1.03

.31

41

36

63

62

53.64

52.26

5.92

5.48

.96

.34

10

10

8.10

8.06

1.07

1.18

.11

.91

with
diabetes

health
y

with
diabetes

Dyadic
satisfaction

25

24

Cohesion

10

Consensus
Affective
expression

Discussion
The information obtained regarding parental stress in mothers of children with diabetes is
significant and important.

A study regarding family roles in the treatment of a child with diabetes were carried out
by Etzwiler and Sines (1962) involving 72 children, aged between 6 and 15, and their parents.
The study reported that mothers and fathers assumed very different roles in the care of their
child's diabetes. In most of the families studied, mothers were primarily responsible for
communicating with physicians, supervising all aspects of the treatment regimen at home, and
handling diabetes-related emergencies. This is a common situation for Romania, where mothers
quit their jobs to stay home and take care of the childs condition. Not surprisingly, mothers score
high on parenting stress.
Normal duties and responsibilities of a parent are doubled in the cases of mothers of
children with diabetes because of the burdens of treatment. Thus mothers find themselves with
very little time for personal needs or for their husbands; they can no longer relax or do pleasant
activities whenever they feel the need. Thus they experience a state of strain and stress. This
condition may be exacerbated for Romanian mothers because of the low level of information
they receive, the limited support and especially because of the weaknesses of the health system.
It is also important to underline that the parenting stress the mothers experience is
generated in the same time both by childrens behavioural and mood characteristics that may be
exacerbated by the disease, such as hyperactivity, lessened adaptability, demandingness, mood
and acceptability and also by such parent characteristics as competence, feelings of role
restriction, depression and health.
The results obtained in this study are consistent with other studies regarding parental
stress when there is a diabetic child in the family.
A study by S.M. Seppnen, H.A.Kyngs, M. J. Nikkonen (1999) regarding the process of
coping in parents of children with diabetes identified six stages that parents pass through:
distrust, lack of information and guilt, learning about care, normalization, uncertainty and
reorganization. In each of these periods, parental stress is felt differently. A chronic illness of a
child is always a shock for parents who often lose control and tend to deny their feelings or the
diagnosis. This can also be a manifestation of stress. In Seppnen, Kyngs and Nikkonens study
issues shown to be stressful for parents include those arising from perceived lack of skills and
knowledge regarding taking care of a diabetic, and the responsibility and changes in the daily
routine of the family.
In a study of parenting stress involving 52 mothers of children with diabetes, Hauenstein,
Scarr and Abidin (1987) showed those mothers to have high scores on mood and demandingness
scales and low scores on such scales as acceptance and parent reinforcement in the child domain.
In the parent domain low scores were obtained in competence, health, partner and attachment.
The researchers found that in families with a diabetic child mothers may need help in identifying
the positive attributes of the child and to be reassured of their maternal skills (R. Abidin, 1995).
Auslander, Miller-Johnson, Weist and Jacobson studied the factors that may be correlated
with decreased metabolic control and showed a close relationship with high levels of family
stress, low family resources, increased conflict between parents and children, low levels of
parental involvement and of the ability of families to express their feelings openly (Court &
Lamb, 1997).

Interesting results were obtained regarding health perception. Mothers of children with
diabetes think to a greater extent that health is controlled by chance or luck than do mothers of
healthy children. This effect can be the effect of the diabetes diagnosis received by the child.
Most of the time, diabetes has an insidious onset and the diagnosis is made quickly by a doctor
who does give clear explanations about the causes of the disease. It is known that type 1 diabetes
is an autoimmune disease with a multi-factorial mechanism. These are the reasons why a parents
question "why especially my child?" remains unanswered. It is hard for some parents to
understand why type 1 diabetes is also named destiny disease. In Romania this lack of control
over health can also be the result of lack of trust in the medical system and the lack of preventive
health behaviour.
Recent studies have reported contradictory psychological findings regarding couple
satisfaction. Some suggest that mothers of children with a diabetes diagnosis receive less spousal
support than mothers of healthy children and lack of paternal involvement has important
implications for a mother coping with her child, (Hauenstein, E., Marvin, R., Snyder, A., Clarke,
W., 1989) while other studies reported no significant differences between parents caring for a
child with chronic disease or impacts on married parents with healthy children affecting marital
quality or perceived marital stability (Eddy, L., Walker, A., 1999).
This study has revealed no difference between mothers of children with diabetes and
mothers of healthy children regarding couple satisfaction as defined by dyadic satisfaction,
cohesion, consensus and affective expression responses. These results may reflect the fact that
the study group was formed by mothers of children with a good glycaemic control. The
importance of good psychological adjustment in families has been highlighted in several studies.
Dumont investigated psychological factors associated with acute complications in children with
DID and drew attention to the part played by family conflict, low levels of cohesion, family
organization and expressiveness in the presentation of low levels of social skills by children,
behavioural problems and recurrences of diabetic ketoacidosis (Court & Lamb, 1997). Also
Ryden, comparing families of children with optimal metabolic control in infants with those with
poor physiological adjustment, showed that the latter have parents who appreciate each other
less, do not agree on child care and do not encourage independence and integrity in their child.
He showed that family therapy is more effective than conventional therapy in improving diabetes
control (Court & Lamb, 1997).
6. Conclusions
Diabetes, together with myocardial infarction and cancer, ranks at the top of the hierarchy
of medical conditions from the point of view of epidemiological prevalence. This condition
affects the psycho-somatic-relational balance of both patients and their family members through
a number of factors such as the acceptance of the diagnosis, adapting to a strict diet consistent
with a constant medication and adjustments of lifestyle.
This paper has aimed to highlight changes in maternal psychological profile of children
with type 1 diabetes. Results have shown differences between the mothers of children with
diabetes and mothers of healthy children in some psychological dimensions such as parental

stress and health perception. No differences were demonstrable regarding maternal selfperception on martial satisfaction.
These results show some changes in the psycho-socio-relational registry of mothers of
children with diabetes, changes that need to be known to be taken into account whenever a child
is newly diagnosed with type 1 Diabetes. That information is very useful to initiate support and
interventions programs for disease acceptance and adaptation to new conditions of life imposed
on the family by the childs condition. Such programs for the children themselves, and for the
parents and siblings of those diagnosed, should be used to complement treatment schemes
established by the attending physician to improve quality of life for families who have a child
with diabetes and to minimize the negative effects of the diagnosis.
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