art-3a10.1007-2fs11195-013-9308-6
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O R I G I N A L P A P E R
Psychosocial Problems and Marital Adjustments
of Families Caring for a Child with Intellectual Disability
Dilek Kilic • Başaran Gencdogan • Beyhan Bag • Derya Arıcan
Published online: 4 August 2013 Springer Science+Business Media New York 2013
Abstract Caring for a child with intellectual disability can often be stressful and can
influence the inter- and intra-familial relationships of all family members throughout the
child’s lifetime. This descriptive and comparative study was conducted to identify psy-
chosocial problems and marital adjustments in families having a child with intellectual
disability. One hundred and fifty parents whose children with intellectual disability
attended the East Anatolia Special Education and Rehabilitation Center (Group 1), 140
parents whose children with intellectual disability were registered with the HandicappedEducation and Cooperation Association but were not receiving special education and
rehabilitation support (Group 2), and 150 parents with healthy children (Group 3) were
participated in the study. The Problem Identification form, Beck Depression Inventory,
Beck Anxiety Scale, Social Support Scale were applied to parents. Marital adjustments
(compatibility and cooperation) of spouses were assessed using the Birtchnell Parent
Evaluation Scale. Most of the parents in Groups 1 and 2 reported that they had psycho-
logical, physical and economic problems and that they had concerns about their children’s
care and future. Parents in Group 2 had higher depression and anxiety scores and lower
social support scores than those in Groups 1 and 3. Anxiety and depression levels in
parents increased as their marital adjustments decreased. In summary, the data emphasize
D. Kilic (&)
Department of Publich Health Nursing, Faculty of Health Sciences, Atatürk University,
Erzurum, Turkey
e-mail: [email protected]; [email protected]
B. Gencdogan
Kazım Karabekir School of Education Department, Atatürk University, Erzurum, Turkey
e-mail: [email protected]
B. Bag
Department of Psychiatric Nursing, Faculty of Health Sciences, Atatürk University, Erzurum, Turkey
e-mail: [email protected]
D. Arıcan
Department of Publich Health Nursing, Health Sciences Institute, Atatürk University, Erzurum, Turkey
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the importance of continuing provision of comprehensive education and rehabilitation
support to parents who have a child with an intellectual disability, especially those who are
economically challenged.
Keywords Intellectually disabled child
Parents
Marital adjustment Psychosocial problems Education and rehabilitation service Nursing Turkey
Introduction
Intellectual disability is an important societal issue that requires lifelong observation,
control, care, treatment, and rehabilitation. It adversely impacts the affected individual and
his/her parents [1–3]. According to the Government Statistics Institute, 12.3 % of the
Turkish population are disabled, and 18.6 % of these have an intellectual disability [4],
ranking the second among all types of disability [4]. This figure suggests that intellectual
disability is an important issue.
An intellectually disabled child could contribute to his/her parents’ stressful life as
continuous adaptation is required, thus threatening family integrity and leading to many
adjustments in their daily life and plans [5]. Broadly defined, marital adjustment refers to
the adjustment that every individual comes across after his/her marriage and covers dif-
ferent agendas between couples, such as adjustment to their mate, sexual adjustment,
emotional adjustment, in-law adjustments. In this paper, marital adjustment can be defined
as compatibility while rearranging roles in daily life as demanded by having an intellec-tually disabled child. Marital adjustment in families having a child with intellectual dis-
ability is controversial. For example, in some studies reduction [5–7] and no change [8, 9]
in marital adjustment have been reported. One of the problems found among couples is that
they become distant and blame each other [10]. Moreover, there have been reports indi-
cating experiences of difficulty in life and compromised sexual life due to having a child
with an intellectual disability [11]. In general, parents with a child who has an intellectual
disability have higher levels of marital conflict [5] and divorce [6].
Parents expecting a baby with an intellectual disability have more challenging lives.
This adversely affects family members’ psychological and physical health, their social life,
and even their economic status [2, 5, 7, 12–15]. They are often socially isolated through the
limitation of relationships with their friends and relatives [15]. Families might also
experience emotional and behavioral problems in response to a stressful life experience.
Anxiety and depression are issues faced by these families, which may make the child’s
care more difficult [1, 7, 12].
There are insufficient institutions that can provide the necessary care and education to
families having a child with an intellectual disability in Turkey. In addition, there is also a
lack of awareness about such services; some families either accept living with associated
problems or search for help in their communities, such as among friends and relatives.
Thus, the absence of safe communication with professionals and receiving appropriatesupport is one of the most important limitations for families in developing positive coping
behaviors. Nurses have important roles among those health professionals who provide care
for children with an intellectual disability as well as their parents [3, 16]. The basic aim of
the nurses’ interventions with families who have a child with intellectual disability is to
increase the families’ skills in coping with difficulties [1].
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Public health nurses, in particular, can take action on important initiatives within
primary, secondary and tertiary health services to prevent disability, encourage early
diagnosis of disability, and to continue family-centered care. During family-centered
care for an individual with intellectual disability, knowing how the child is influencing
the parent would help nursing activities to be performed in a planned manner [ 3, 17].Although programs for children with intellectual disability emphasize that families also
need help, observations indicate that this help is often not directed towards parents.
Therefore, psychosocial problems, lack of social support and the parents’ marital
relations and adjustments that result from having a child with an intellectual disability
should be investigated. This descriptive and comparative study was therefore conducted
to identify psychosocial problems and marital adjustments of parents having a child
with intellectual disability.
Methods
Study Type
This research is a descriptive-comparative study.
Population and Sample
The sample included the parents and 75 children with intellectual disability who attended the
East Anatolia Special Education and Rehabilitation Center in Erzurum, Turkey (Group 1);the parents and 70 children with intellectual disability who were registered to the Handi-
capped Education and Cooperation Association, but not attending a rehabilitation center
(Group 2); and the parents and 75 healthy children (Group 3).
Data Collection Instruments
Five instruments were used to collect data. These included a questionnaire form with two
different formats for parents who have disabled and healthy children to identify socio-
demographical properties and problems of families with an intellectually disabled child.
Birtchnell Marital Partner Evaluation Scale
The Birtchnell Marital Partner Evaluation Scale (BMPES) is an assessment tool used to
measure how couples evaluate each other in their marital relationships. Birtchnell [18]
stated that some personality dimensions impede an adaptable marital relationship. These
dimensions of the scale are dependency, detachment and directiveness—the dependability
dimension increases marital adjustment. There are scale versions for both males and
females. Validity and reliability of the scale in a Turkish sample were confirmed by
Kabakçı
et al. [19]. Cronbach’s alpha values of the subdimensions of the scale werebetween 0.83 and 0.90 for the female version and between 0.72 and 0.90 for the male
version.
In marriages defined by both males and females as ‘‘happy’’ it was observed that the
partner is perceived as reliable. Total scores of the detachment, directiveness and depen-
dency subscales can assess negative characteristics of the marriage. In this respect,
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‘‘marital maladjustment’’ is determined by dividing the total scores of detachment, di-
rectiveness and dependency subscales by the total number of items. The ‘‘Marital
Adjustment’’ score is determined by dividing the score of the dependability subscale by the
total number of items. If the adjustment score is higher than the maladjustment score then
the marriage is accepted as adaptable [19]. In the present research, marriage relations wereinterpreted based on marital adjustment score averages because these were higher than
marital maladjustment score averages.
Beck Depression Inventory
The Beck Depression Inventory (BDI) is a 4-point-Likert-type scale developed by Beck to
assess risk and levels of depression for adults [20]. The Cronbach’s alpha coefficient was
0.80 and cut-off point was 0.17 in the Turkish validity and reliability study [21] and scores
ranged between 0 and 0.63.
State-Trait Anxiety Inventory (STAI)
State Inventory consists of two different scales with a total of 40 items that assess
situational and continuous anxiety [22]. The Trait Anxiety Scale was used in the
present study because having a child with an intellectual disability was considered a
continuous situation. The Cronbach’s alpha reliability coefficients in the Turkish ver-
sion were between 0.83 and 0.87. The Trait Anxiety Scale identifies how the person
feels himself independent from his current state and conditions. A Turkish translation
and norm study was conducted by O¨
ner and Compte [23]. The total score from twoscales ranged between 20 and 80; scores greater than 60 were considered above normal
anxiety levels.
Multidimensional Scale of Perceived Social Support (MSPSS)
The scale, developed by Zimet et al. [24] and translated to Turkish by Eker et al. [25],
assesses the efficiency of social support from three different sources. The scale consists of
12 short items and is easy to complete and apply. There are three social support resources,
each comprising four items—Family (items 3, 4, 8 and 11), Friends (items 6, 7, 9 and 12)
and Significant other (items 1, 2, 5 and 10). Each item is assessed by a 7-interval scale.Each subscale is calculated by adding up all four items and the total scale score is cal-
culated by adding up all subscale scores. As the total scores increase social support per-
ception increases. In the present study, family referred to parents, close relatives and
significant others (the latter included professional persons such as doctors and nurses).
Eker et al. reported that the total Cronbach’s alpha coefficient for the Social support scale
was 0.89 and Cronbach’s alpha coefficients were 0.85, 0.88, and 0.92 for family, friend,
and significant others, respectively [25].
Data Collection
Before collecting data, participants were informed about the study in accordance with
ethical principles. Participants were asked if they were willing to participate. Data were
collected by the researcher using face-to-face interviews.
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Data Analysis
Data were analyzed by using the SPSSTM for Windows 16.0 package program. Descriptive
statistics, cross-tables, and group differences as well as correlations were generated in data
analyses.
Results
Demography and Challenges
The mean age of mothers was 33.79 ± 6.88, with 43.6 % of them indicating they had
graduated from secondary school, and 88.2 % were housewives. The mean age of fathers
was 36.60 ± 8.18, with 40.5 % who had graduated from high school, and 52.3 % were
government workers. About 62 % of the parents had a balanced income–outcome ratio,
40 % of them had two children, and 22.3 % of them had a consanguineous marriage. The
mean age of children with intellectual disability was 8.06 ± 4.0, there were 59.3 % males
and 40.7 % females (Table 1).
Major problems reported by families having a child with intellectual disability were
care problems (72.4 %), economic problems (66.2 %), problems in social relationships
(60.1 %), future anxiety (55.4 %), primary care problems (42.8 %), problems associated
with the environment (40.0 %), guilt and hopelessness (32.4 %), trauma (accident/injury)
anxiety (31.7 %), physical illness in their parents (24.8 % in mothers and 16.6 % in
fathers), and shame (21.4 %) (Table 2).Mothers in Group 2 had higher depression ( p\ 0.05; Table 3) and anxiety ( p\ 0.001;
Table 3) levels than mothers in Groups 1 and 3. However, depression levels in fathers in
these groups did not differ ( p[ 0.05; Table 3).
Mothers in Group 2 received less social support from friends, family and significant
others than mothers in the other two groups ( p\ 0.001; Table 3). Fathers’ social support
received from friends among the groups did not differ. However, social support received by
the fathers from family ( p\ 0.006) and significant others ( p\0.04) were different across
the groups (Table 3).
Marital Adjustment
The marital adjustment score of mothers in Group 2 was lower than that for mothers in
Groups 1 and 3 ( p\ 0.01; Table 3). The marital adjustment score of the fathers did not
differ between the groups. Moreover, parental depression and anxiety scores increased as
their marital adjustment scores decreased (Table 4). The social support was positively
correlated with the marital adjustment score.
Discussion
Children with intellectual disability may contribute to problems in their family structure
and functioning. Considering that it is mostly mothers who take care of the child with
intellectual disability, they and other family members can face difficulties and problems,
which might also be reflected in the marital relationship.
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Table 1 Family and child characteristics
Special
education
Non special
education
Healthy
children
Total v2 p
n % n % n % n %
Gender of disabled child
Female 27 36.0 32 45.7 39 52.0 98 44.5 3,943 0.139
Male 48 64.0 38 54.3 36 48.0 122 55.5
Mother’s age years
23–29 32 42.7 23 32.9 29 38.7 84 38.2 7.463 0.113
30–36 20 26.7 28 40.0 16 21.3 64 29.1
37 and over 23 30.7 19 27.1 30 40.0 72 32.7
Father’s age years
23–29 15 20.0 16 22.9 14 18.7 45 20.5 3.389 0.49530–36 30 40.0 20 28.6 22 29.3 72 32.7
37 and over 30 40.0 34 48.6 39 52.0 103 46.8
Mother’s education level
Literate 7 9.3 8 11.4 5 6.7 20 9.1 13.521 0.095
Primary school 15 20.0 25 35.7 14 18.7 54 24.5
Secondary school 32 42.7 26 37.1 38 50.7 96 43.6
High school 14 18.7 7 10.0 16 21.3 37 16.8
University 7 9.3 4 5.7 2 2.7 13 5.9
Father’s education levelPrimary school 5 6.7 12 17.1 6 8.0 23 10.5 11.851 0.065
Secondary school 20 26.7 23 32.9 14 18.7 57 25.9
High school 16 21.3 12 17.1 23 30.7 51 23.2
University 34 45.3 23 32.9 32 42.7 89 40.5
Mother’swork status
Unemployed 69 92.0 64 91.4 61 81.3 194 88.2 5.133 0.077
Employed 6 8.0 6 8.6 14 18.7 26 11.8
Father’s occupation
Civil servant 40 53.3 42 60.0 33 44.0 115 52.3 5.160 0.271Worker 30 40.0 21 30.0 32 42.7 83 37.7
Independent occupation 5 6.7 7 10.0 10 13.3 22 10.0
Financial status
Income[ expenditure 14 18.7 19 27.1 15 20.0 48 21.8 1.838 0.766
Income = expenditure 49 65.3 40 57.1 47 62.7 136 61.8
Income\ expenditure 12 16.0 11 15.7 13 17.3 36 16.4
Number of children
1 14 18.7 13 18.6 7 9.3 34 15.5 4.208 0.649
2 29 38.7 26 37.1 33 44.0 88 40.0
3 21 28.0 18 25.7 24 32.0 63 28.6
4 11 14.7 13 18.6 11 14.7 35 15.9
Consanguineous marriage
Yes 20 26.7 15 21.4 14 18.7 49 22.3 1.429 0.490
No 25 73.3 55 78.6 61 81.3 171 77.7
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In the present study, problems associated with having a child with intellectual disability
were identified as caring problems, future anxiety, economic problems, problems in social
relations, problems with healthy children, primary care problems, physical illnesses in
parents, trauma anxiety, shame, guilt and hopelessness. Families having a child with
intellectual disability have a hard time performing their parenting roles because of their
feelings of guilt and sorrow [2, 26]. Some parents do not want to believe the seriousness of
their child’s condition and deny it. Some parents accept the situation; however, feelings of
anxiety and hopelessness can create ignorance. Some parents are over-fond of their child
and do even the simplest things for their child and thus harm the child’s independence.
Table 2 Problems of families with an intellectually disabled child
N %
Difficulty caring for the child 105 72.4
Financial problems 96 66.2Problems in social relationships 87 60.1
Future anxiety 79 55.4
Primary care problems 62 42.8
Problems associated with the environment 58 40.0
Problems with healthy children 48 33.1
Guilt and hopelessness 47 32.4
Trauma anxiety 46 31.7
Physical health problems of the mother 36 24.8
Shame 31 21.4Physical health problems of the father 24 16.6
More than one item was marked
Table 3 The distribution of parents’ trait anxiety, depression, social support, marital adjustment
Special
education
Non special
education
Healthy
children
F p
X ± SS X ± SS X ± SS
Trait anxiety Mother 52.79 ±
8.7 56.73 ±
13.7 49.87 ±
6.5 8.579 0.000Father 46.23 ± 7.1 46.94 ± 6.8 42.23 ± 8.6 8.340 0.000
Depression Mother 15.92 ± 5.8 17.61 ± 6.6 14.77 ± 6.9 3.521 0.031
Father 15.09 ± 6.4 16.41 ± 7.8 13.91 ± 7.4 2.190 0.114
Perceived social support
Friend support Mother 15.44 ± 3.7 13.99 ± 5.4 17.07 ± 5.0 7.685 0.001
Father 17.49 ± 4.1 17.26 ± 3.1 17.97 ± 5.0 0.562 0.571
Family support Mother 2 0.20 ± 4.4 19.00 ± 4.2 21.51 ± 6.1 4.578 0.011
Father 19.40 ± 4.0 18.49 ± 5.7 20.99 ± 4.4 5.201 0.006
Significant other
support
Mother 16.72 ± 4.5 14.70 ± 6.1 17.40 ± 5.1 5.128 0.007
Father 19.23 ± 4.3 17.71 ± 4.6 19.63 ± 5.3 3.227 0.042
Total social support Mother 52.36 ± 8.9 47.69 ± 10.8 55.97 ± 10.0 12.745 0.000
Father 56.12 ± 9.0 53.46 ± 9.9 58.59 ± 10.0 5.144 0.007
Marital adjustment Mother 2.29 ± 0.4 2.22 ± 0.4 2.39 ± 0.3 4.505 0.012
Father 2.19 ± 0.3 2.16 ± 0.3 2.26 ± 0.3 2.800 0.063
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It is suggested that parents who have problems in caring for the child with intellectual
disability should be supported by education [17, 27]. This is important for them to over-
come psychological, social, economic, and physical problems, which vary by the age of child, level of disability, and social support systems available [5, 15, 17, 27].
It appears that mothers are more prone to depression [7, 12, 28] and experience anxiety
to a greater degree [29, 30] than fathers, possibly due to spending more time in caring for
the child with intellectual disability. The literature states that parental anxiety levels
increase depending on the child’s special needs, the severity of his/her disability, and social
support from the environment [31]. Their worry is continuous due to uncertainty about
what may happen to the child, especially after they pass away [27]. The relationship
between anxiety levels and social support is reciprocal [12, 27]. Psychosocial support
services are thus important for families who have a child with intellectual disability. The
anxiety level can be reduced by educating and supporting parents [28] and thus help them
gain problem-solving skills [29]. This type of support (education, counseling services, etc.)
helps adaptation to the current situation and is associated with a less stressful daily life
[12]. Studies reporting no effect of the social support on parental feelings are available
[5, 28]. In the present study, social support by significant healthcare providers (i.e., nurses)
was perceived as low. Differences in the support provided by these healthcare providers
could be due to the persons so defined, the time they spend with them and the comfort they
provide. This finding also suggests that professional healthcare supporters, including
nurses, need to enhance their knowledge and offer adaptive strategies for these parents.
Studies in nursing report that education and support are very effective in helping indi-viduals to cope with stress through reducing anxiety [30], lessening depressive symptoms
[1, 12] and reducing exhaustion [27].
The birth of a child with intellectual disability may cause problems in communication
within the family [2] and cause problems in marital adjustment due to the parents’ failure
of emotional control and coping behaviors [7]. Limitation of free time and leisure activity
of the mother, even those with housewife roles, due to caring for a child with an intel-
lectual disability reflects distortions in behavior and emotional breakdown [10]. Indeed,
this study confirmed that mothers, but not fathers, whose children with intellectual dis-
ability did not receive a special education had lower marital adjustment than those that had
healthy children. Parents having a child with intellectual disability have consistent marital
problems, such as an unhappy sexual life and problems in their relationship with their
partners [5, 6, 11]. In the present study, maternal depression and anxiety levels were
negatively correlated, whereas social support perception was positively correlated with
marital adjustment—this is in agreement with the literature [10]. The psychological
Table 4 Correlations of marital adjustment, depression, anxiety, social support
Variables Marital adjustment
Mother Father
Depression -0.212** -0.309**
Anxiety -0.284** -0.378**
Social Support 0.384** 0.540**
** p\0.01
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wellbeing of family members, especially mothers, can be negatively affected by the care
needs and these could damage mothers’ roles as mother and partner.
Parents who can control their stress and who are successful at solving their problems
have improved marital adjustment. It is reported that as couples’ problem-solving skills
increase then problems between couples decrease and marital adjustment increases [26,32]. These results suggest that social support can improve how these families deal with
their circumstances. In fact, receiving social support behaviors contribute to acceptance of
the child with intellectual disability in society. As perceived social support increases, trait
anxiety level decreases, and this is associated with increased marital adjustment. Thus,
nurses’ knowledge and skills as counselors are important to reduce parents’ difficulties in
caring for their children with intellectual disability.
Conclusions
In this study, most of the parents who had a child with intellectual disability had psy-
chological, physical, social and economic problems and worried about their child’s care
and future. Parents whose children with intellectually disability did not attend a rehabili-
tation center and were unable to receive a special education had lower marital adjustments,
higher anxiety and depression levels, and lower social support mechanisms than those that
had healthy children. Increased parents’ anxiety and depression levels were associated with
decreased marital adjustment. As social support increased, marital adjustment increased.
The results suggest that nurses can play a key role in providing a planned education to
these unfortunate parents to improve both their knowledge and skills in their own and their
child’s care. The Health Ministry, Social Services and Municipal governments should
collaboratively facilitate rehabilitation centers as parents who had support from these
centers showed better adaptation. Psychosocial supportive programs should be organized
for parents to reduce their stress and increase their marital adjustment.
Acknowledgments The present work was supported by the Research Fund of Atatürk University, Project
No.: BAP 316. We are grateful to all the parents of the intellectually disabled children who participated in
our research. This study has been presented as a poster at the 1st International Congress on Nursing
Education, Research & Practice, October 15–17 2009, Thessaloniki, Greece.
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