Difficulties Experienced by Families With
First received
Blackwell June 23,
Publishing Inc2006; Revision received December 27, 2006; Accepted for publication May 27, 2007.
Disabled Children
Esine Sen and Sabire Yurtsever
PURPOSE.
the difficulties experienced by families with
disabled children.
DESIGN AND METHOD.
study was carried out in one public and two
private rehabilitation centers. A questionnaire
was used for data collection.
RESULTS.
about their child’s condition. Mothers felt severe
sadness, and they indicated that after having a
disabled child, their social life, working life, and
family relationships were all affected. Families also
have financial problems.
PRACTICE IMPLICATIONS.
child need support from professionals. Nurses have
a vital role in providing support for these families.
Search terms: Nursing, parents of disabled
children, support
First received June 23, 2006; Revision received December 27, 2006;
Accepted for publication May 27, 2007.
JSPN Vol. 12, No. 4, October, 2007
238
This study was designed to determine Esine Sen, RN, MSc, is a pediatric nurse, Pediatric Clinic,
Mersin University School of Medicine Research and
Administration Hospital; and Sabire Yurtsever, PhD, RN,
is Assistant Professor, School of Health, Mersin University,
Mersin, Turkey.
This descriptive research Background
The World Health Organization has defined dis-
ability as an inability or handicap that interferes with an
individual’s ability to have a lifestyle that is considered
normal for their age, gender, and social and cultural
state (Ocakçı, 2002b; Turkey Prime Minister Administra-
tion for Disabled People, 2002). The American Health
Families did not have enough knowledge Association also defined a disabled child as a child
who cannot play, cannot learn, or cannot do things that
children at his or her age can do, or, said another way, a
child who cannot fully use all of his or her physical,
mental, and social abilities for various reasons (Urhan,
2002). In general, disability in children can be seen
individually or together as several physical, develop-
mental, cognitive, or affective disabilities.
Today, intellectually, physically, or emotionally
disabled individuals comprise a significant portion
of the world population. According to World Health
Organization statistics, it is estimated that disabled
Parents with a disabled
individuals comprise 10% of the population of developed
countries and 12% of developing countries (Baykan,
2003). An estimated 12% of children, ages 5–17 years
(Hogan, Msall, Rogers, & Avery, 1997), or approxi-
mately 6.6 million children in 2000 (U.S. Census Bureau,
2001) had disabling conditions. In Turkey, it is estimated
that there are 9 million children, ages 0–18 years, who
are disabled or have special needs. Every seven to eight
families has one child or adult member with a disability
(Aytaç, 2000; Gökcan, 2002; Ocakçı, 2002a).
The birth of a child with an abnormality or the pres-
entation of a handicap being diagnosed as a disability
is a crisis in which the parents’ expectations are turned
upside down. When parents learn that their child is
disabled, they experience mixed emotions. The general
reactions of parents can be grouped under three main
JSPN Vol. 12, No. 4, October, 2007
categories (Abidoglu & Gümüsçü, 2000; Kearney &
Grifin, 2001).
Primary Reactions
Shock. Frequently this is the first reaction dis-
played by parents when they learn that they have a
disabled child because their family is faced with a
situation that they did not expect and for which they
have not been prepared. This state is generally char-
acterized by crying, lack of response, and feelings of
helplessness. In a study conducted by Özsenol and
colleagues (2003) in Turkey, the most frequently experi-
enced emotions of parents when they learned they had
a disabled child were shock, helplessness, hopelessness,
and disappointment.
Denial. Some parents do not accept that their child
has a disability. Denial, which is a defense mechanism,
is caused by fear of facing something that is unknown.
Concern about the child’s future, discontentment, and
anticipation of the responsibilities that need to be
assumed may cause the family to deny that the child is
disabled (Abidoglu & Gümüsçü, 2000; Pott & Mondiecs,
2002; Wittert, 2002).
Suffering and depression. Having a disabled child
means the destruction of parents’ dreams of their ideal
child (Schmitke & Schlomann, 2002). The suffering that
is experienced in this type of situation is equal to the
suffering experienced with the loss of a loved one. Suf-
fering is a feeling that facilitates a family’s acceptance
of the truth that they have a disabled child. Depression,
though, occurs at the end of the suffering process. The
majority of parents become depressed when they believe
that they do not have the strength necessary to face the
responsibilities they have to assume. As a result of
suffering and depression, withdrawal and avoidance
of social activities can be seen in families. On the other
hand, when these behaviors are not excessive, they help
the family to access their former strength. It is not known
when suffering and depression completely resolve.
This time interval can vary from family to family
(Abidoglu & Gümüsçü, 2000; Wittert, 2002).
JSPN Vol. 12, No. 4, October, 2007
Secondary Reactions
Feelings of guilt. This reaction is observed intensely
in every family. Guilt feelings are generally caused
by parents thinking that they caused their child to be
disabled or that they are being punished by God for
some mistakes they have made. Guilt in parents of a
disabled child may help them keep their anger against
the child under control. Out-of-control anger can be
seen sometimes in parents who are in complete denial
(Abidoglu & Gümüsçü, 2000; Wittert, 2002).
In studies conducted with families of disabled chil-
dren, it has been determined that mothers and fathers
frequently feel responsible for their disabled child’s
condition and experience feelings of guilt. In addition,
the mothers and fathers are left to cope with their
child’s diagnosis of disability as well as the complex
emotions they are experiencing (Foster, O’Brien, &
McAllister, 2004; Godress, Ozgul, Owen, & Foley-Evans,
2005; Pelchat & Lefebvre, 2004).
Indecision. While some parents are able to adapt
relatively quickly to the fact that their child is dis-
abled, other parents do not. Indecision about the
situation can be the cause for family members blaming
or neglecting one another (Abidoglu & Gümüsçü,
2000).
Anger. Anger can be a major obstacle to parents’
acceptance of their disabled child. Anger is gener-
ally seen in two ways. In the first way, the parents
ask each other, “Why us?” This type of anger is gener-
ally accepted to be a healthy response. The second
type, however, is when anger is directed at someone
who is not the source of the problem. Anger
directed at the disabled child is not accepted by
society (Abidoglu & Gümüsçü, 2000; Schmitke &
Schlomann, 2002).
Shame. Parents perceive their child’s handicap as
their own mistake because they see their child as an
extension of themselves; therefore, they avoid being
seen. Generally, families experience embarrassment
when they face concern from others about their chil-
dren (Abidoglu & Gümüsçü, 2000).
239
Difficulties Experienced by Families With Disabled Children
Tertiary Reactions
Bargaining. The important thing for a family is for
their disabled child to be like a healthy child. The family
may bargain with anyone who can make this happen.
People who are bargained with may be healthcare pro-
fessionals, mediums, or others who think they have
magical powers, or even God. For the majority of the
time, parents will not easily accept that their child is
disabled even if they receive information and help from
professionals (Abidoglu & Gümüsçü, 2000).
Acceptance and adaptation. In this phase, the family
tries to get to know the disabled child and understand
and solve their problems; however, the negative feel-
ings that are experienced in the other phases never
completely disappear. Adaptation is an extension of
the acceptance phase transformed into action. Adapta-
tion is a process that never completely ends. The adap-
tation process is significantly affected by the personal
characteristics of the parents. This process begins after
a family accepts that they cannot change the fact that
they have a disabled child.
The child’s disability may make it necessary for all
the members of the family to sacrifice for the sake of
the disabled child. Having one disabled family mem-
ber may affect the relationships within the family,
the family’s economic situation, the family’s daily
lifestyle, and the family’s plans and expectations for
the future. This crisis situation may be the cause for
members of the family to experience stress (Emerson,
2003; Foster et al., 2004; Green, 2003; Kayhan, 1995;
Pelchat & Lefebvre, 2004; Raina et al., 2005). In a study
conducted by Brinchmann (1999), a high level of stress
was found in the parents of disabled children. Among
the most significant factors creating stress in the fam-
ily of a disabled child were the child’s developmental
difficulties, health problems, and difficulties with
care because of the child’s dependency (Harden, 2005;
Özsenol et al., 2003). Related to these factors was the
family’s concern for the future of their child.
Parents of a normal child have the responsibility to
meet the needs of and prepare an appropriate environ-
240
ment for their child’s healthy growth and development.
The parents of a disabled child, however, in addition
to these responsibilities, are also burdened with addi-
tional responsibilities, such as teaching the disabled
child skills and doing physiotherapy. For this reason,
the parents of a disabled child need additional money
and time (Emerson, 2003; Roberts & Lawton, 2001).
Because parents need extra time for their disabled child,
they do not have enough time for themselves, each
other, or their other children. For this reason, families
may need to make changes in their social lives. Having
a disabled child may also have a negative effect on
marital relationships. The birth of a disabled child may
cause tension as spouses blame each other.
Families with disabled children may also experi-
ence economic difficulties. Studies have reported that
families of disabled children have financial difficulty
(Christina & Patrica, 1992; Gökcan, 2002; Mutlu, Demir,
Kerem, & Livanelioglu 2003; Urhan, 2002). In addition,
because one parent may be responsible for the care of
the disabled child, that parent may have to stop work-
ing, which causes loss of income and financial diffi-
culty for the family (Çavusoglu, 2002; Karancı, 1997;
Taanlia, Syrjala, Kokkoken, & Jarvelin, 2002; Yurdakul,
Gırlı, Özekes, & Sarısoy, 2002).
As stated above, the family who has a disabled
child may be in a crisis situation. The difficulties (e.g.,
care, psychological, social, and economic) experienced
by family members during the process of adaptation
toward living with the disabled child can lead to con-
flict within the family; and there may be changes in
individual roles and functions within the family. The
quality of life for family members is negatively affected
by these problems. As can be seen here, a holistic
approach to care in families with disabled children is
gaining importance. However, studies conducted on
this subject show that healthcare personnel have been
seen to be inadequate in providing support and guid-
ance to families during this extremely distressing time
(Balling & McCubbin, 2001; Fisher, 2001; Hall, 1996).
Due to inadequate support from healthcare personnel,
families try to cope with crisis situations on their
JSPN Vol. 12, No. 4, October, 2007
own and try to find the most appropriate solutions
themselves. However, the solutions they find are not
always the healthiest choices.
It is essential to provide family-centered care, using
a team approach, to families with disabled children,
while being aware of the problems that the child can
create for the family. It is important for families with
disabled children to receive support in adapting to
their children and the difficulties they experience.
Receiving support from a professional may facilitate
the family’s adaptation to the child and their ability to
cope with all the difficulties. One of the professions
that may provide this kind of support is nursing. The
nurse has a closer relationship with the individual,
family, and community. The nurse is also easier to
reach than the other members of the healthcare team.
The difficulties (e.g., care, psychological,
social, and economic) experienced by family
members during the process of adaptation
toward living with the disabled child can
lead to conflict within the family; and there
may be changes in individual roles and
functions within the family.
The nurse, while working with disabled children,
must consider the family and child as a whole and
support the family in coping with their crisis and the
difficulties they are facing. For nurses to be effective as
an important support system, they need to adequately
know the child and family and be able to determine
the difficulties experienced by the family, including
JSPN Vol. 12, No. 4, October, 2007
knowing their sources for support. This approach will
increase the quality of care that is given to the disabled
child and family.
Purpose
This study was conducted to determine the difficulties
experienced by families in the daily care of disabled
children, including the financial and psychosocial
difficulties.
Method
Design and Setting
This research was conducted as a descriptive study.
The research was conducted in Mersin Province in
southern Turkey in one public and two private handi-
capped children’s rehabilitation centers. One of the
three private rehabilitation centers located in Mersin
Province did not agree to allow the research to be
conducted in their facility.
Participants
The research sample was comprised of mothers
with primary responsibility for 103 disabled children,
between the ages of 3 and 18 years, registered in these
centers; 51 of the children have cerebral palsy (CP), 35
have an intellectual disability, and 17 have autism.
Because there were higher numbers of children with
CP than intellectual disability and autism in the centers
where the research was conducted, the mothers of
these children were included in the sample. The major-
ity of the mothers participating in the study were
between 24 and 34 years old, and their mean age was
26.2 years. The descriptive characteristics of the
participants are presented in Table 1.
Five of the mothers with a child enrolled in the
private centers did not agree to participate. The 10
mothers who participated in the pilot test were not
included in the study.
241
Difficulties Experienced by Families With Disabled Children

Table 1. Distribution of Disabled Children’s Diagnoses According to Their Mothers’ Descriptive Characteristics
Diagnoses of disabled children’s

Cerebral palsy Mental retardation Autism Total

Mothers’ descriptive
characteristics N % N % N % N %

Age
24–34 32 62.7 18 51.4 9 52.9 59 57.3
35–44 16 31.4 15 42.9 6 35.3 37 35.9
45+ 3 5.9 2 5.7 2 11.8 7 6.8
Educational status
Illiterate 7 13.7 3 8.6 — — 10 9.7
Elementary school 23 45.1 21 60.0 7 41.2 51 49.5
Secondary school 11 21.6 6 17.1 2 11.8 19 18.4
High school 7 13.7 4 11.4 5 29.4 16 15.5
University 3 5.9 1 2.9 3 17.6 7 6.8
Employment status
Employed 4 7.8 — — 2 11.8 6 5.8
Not employed 47 92.8 35 100.0 15 88.2 9 94.2
Presence of chronic illness
Yes 6 11.8 2 5.7 2 11.8 10 9.7
No 45 88.2 33 94.3 15 88.2 93 90.3

Instrument to the mothers of 10 disabled children at Umudum

The research data were collected using a “Personal
Information Form,” which was developed by the
investigators based on information in the literature.
This form consists of 50 questions. The first 22 questions
are directed at determining the sociodemographic
characteristics of the family and disabled child; and
semistructured questions 23–50 are directed at deter-
mining the difficulties faced by the family (difficulties
experienced in daily care, financial difficulties, psycho-
logical difficulties, and difficulties experienced in
their social lives) and the support that they have
received and want to receive to help with the diffi-
culties they experience. To determine the level of
support, the family rates their support as “adequate,”
“partially adequate,” or “inadequate.”
The content validity of the data collection form was
evaluated before data collection by administering it
Cognitive and Physically Handicapped Private
Education Center. At the conclusion of this pilot test,
revisions were made to one question that was difficult
to understand.
Procedures
Before starting the data collection, the research aim,
method, and data collection form were explained to
and written permission was received from the Turkish
Republic Ministry’s Social Services and Child Protection
Institution Province Directorate; written permission to
conduct the research was also obtained from the
administrators of the private rehabilitation centers.
Interviews were conducted with parents who had
primary responsibility for the care of their disabled
children. Because all of these parents were mothers, the
sample was comprised only of mothers. The mothers

242 JSPN Vol. 12, No. 4, October, 2007

included in the research were told about the purpose
and method of the study, that their participation was
voluntary, and that they could withdraw from the study
at any time, after which they gave their informed consent.
Mothers who agreed to participate in the research
were met in face-to-face interviews for the completion
of the personal information form, which took approxi-
mately 40–60 min.
The data were collected within a 6-month period and
evaluated using the SPSS for Windows 10.0 (Statistical
Package for Social Sciences for Windows) package
program with percentage.
Findings
It was determined that 57.3% of the mothers were
in the 24- to 34-year-old age group. The percentages of
mothers with elementary school education were 45.1%
of mothers with CP children, 60% with intellectual
disability, and 41.2% with autism. The overwhelming
majority (94.2%) of the mothers were not employed
(see Table 1).
The age group distribution of the disabled children
in the research was as follows: (a) 41.7% were 3–6
years old, (b) 47.6% were 7–12 years old, and (c) 10.7%
were 13–18 years old. Seventeen of the children had
a chronic illness; for 13 of these children the chronic
illness was epilepsy, and 15 of the children were on a
continuous medication.
It was determined that 21.4% of the families had a
mother and father who were blood relatives. This con-
sanguinity of the parents was present for 21.4% of the
families with a CP child, 22.9% of the families with an
intellectually disabled child, and 23.5% of the families
with an autistic child. The majority of the sample
(86.4%) were nuclear families, 7.8% were single-parent
families due to death of a parent, and 4.9% were single-
parent families from divorce. Half of the families
(49.5%) had balanced family income–expenditures,
half (50.1%) had less income than expenditures, and
none of the families had surplus of income. The majority
of the families in the sample (89.3%) had one to three
children, and 2.9% had two disabled children.
Difficulty in caring for the disabled child was expe-
rienced by 80.4% of the CP children’s caretakers, 68.6%
of the intellectually disabled children’s caretakers, and
70.6% of the autistic children’s caretakers. The distri-
bution of the children’s disabilities, according to the
difficulties in home care experienced by their care-
takers, is shown in Table 2. It was found that the most

Table 2. The Distribution of the Children’s Disabilities According to the Difficulties in Home Care
Experienced by Their Caretakers
Diagnoses of disabled children’s

Cerebral palsy Mental retardation Autism Total

Difficulties
in home care N % N % N % N %

Feeding 31 73.8 5 20.8 4 33.3 40 51.9

Dressing–undressing 10 24.4 2 8.3 1 8.3 13 16.9
Elimination 37 90.2 12 50.0 4 33.3 53 68.8
Bathing 32 78.0 6 25.0 1 8.3 39 50.6
Carrying 34 82.9 — — — — 34 44.2
Communication 3 7.3 4 16.7 2 16.7 9 11.7
Continuous monitoring/attention 25 61.0 20 83.3 10 83.3 55 71.4

JSPN Vol. 12, No. 4, October, 2007 243

Difficulties Experienced by Families With Disabled Children
Table 3. The Distribution of Children’s Diagnoses According to the Feelings Experienced by Their Mothers
Diagnoses of disabled children’s
Cerebral palsy Mental retardation
Feelings experienced
by their mothers (na) N % N %
Deep sadness 31 60.8 21
Feeling overwhelmed 29 56.9 17
Anger 20 39.2 10
Loneliness 3 5.9 3 8.6
a
n doubled.
difficulties were experienced by the CP children’s
caretakers for activities such as feeding (73.8%),
dressing–undressing (24.4%), assisting with elimination
(90.2%), bathing (78.0%), and carrying (82.9%). The
caretakers of the intellectually disabled and autistic
children experienced the same percentage of difficul-
ties with communicating (16.7%) and continuous
monitoring/attention (83.3%), which were higher than
the caretakers for the CP children. Support for daily
care was received by 80.4% of the caretakers for CP
children, 68.6% of the caretakers for the intellectually
disabled children, and 70.6% of the caretakers for the
autistic children.
In the investigation of the individuals who gave
support in the care, it was determined that the other
nuclear family members gave more support than close
relatives or friends. Another family member supported
73.3% of the CP children’s caretakers, 84.6% of the
intellectually disabled children’s caretakers, and 62.5%
of the autistic children’s caretakers.
In the examination of the sufficiency level of the
support received, 53.3% of the CP children’s caretakers
and 61.5% of the intellectually disabled children’s
caretakers stated that they had “somewhat sufficient”
support, but only 17.6% of the autistic children’s care-
takers stated that they received sufficient support.
Almost half of the families (47.6%) of all of the
disabled children experienced financial difficulties:
244
Autism Total
N % N %
60.0 7 41.2 59 57.3
48.6 10 58.8 56 54.4
28.6 8 47.1 38 36.9
2 11.8 8 7.8
49.0% of the families with CP children, 57.1% of the
families with intellectually disabled children, and 23.5%
of the families with autistic children experienced
financial difficulties.
It was found that 28.2% of the families received
financial support: almost 29% of the families with CP
children, 20.0% of the families of intellectually dis-
abled children, and 40.0% of the families with autistic
children received financial support.
Among the families who received financial support,
96.6% of them reported that they received it from close
relatives (87.5% of the families with CP children and
100.0% of the families with intellectually disabled and
autistic children reported that their source of financial
support was close relatives). Eighty percent of the
families stated that the support that they received was
“somewhat sufficient.” Seventy-five percent of the
CP children’s families, 100.0% of the intellectually
disabled children’s families, and 50.0% of the autistic
children’s families stated that the support that they
received was “somewhat sufficient.”
As shown in Table 3, the mothers stated that they
experienced deep sadness (57.3%), feeling overwhelmed
(54.4%), anger (36.9%), and loneliness (7.8%). In addi-
tion, in response to the question, “What kind of reaction
was given by those around you to the birth of your
disabled child?” 22.5% of the CP children’s mothers,
17.1% of the intellectually disabled children’s mothers,
JSPN Vol. 12, No. 4, October, 2007
Table 4. The Distribution of Children’s Disabilities According to the Changes in Their Mothers’ Social Lives
Because of Having a Disabled Child
Diagnoses of disabled children’s
Cerebral palsy
Changes in disabled
children’s mothers’ social lives N %
Changes 41 80.4
No changes 10 19.6
and 11.8% of the autistic children’s mothers stated that
they were blamed by their family for their children’s
disability. In the investigation of the people who
blame the mother, 53.8% of the mothers of CP children
were blamed by their husband’s family; 50.0% of the
intellectually disabled and 100.0% of the autistic
children’s mothers were blamed by their husbands.
It was determined that 71.8% of all the mothers
received emotional support (68.6% of the CP children’s
mothers, 68.6% of the intellectually disabled children’s
mothers, and 88.8% of the autistic children’s mothers).
More than half (56.8%) of the mothers who stated that
they received emotional support received that support
from another family member and 9.5% from a special-
ist. Other members of the family provided emotional
support to 54.3% of the mothers of CP children, 58.3%
of the mothers of intellectually disabled children, and
60.0% of the mothers of autistic children. The source
of emotional support was a specialist for 16.7% of the
intellectually disabled children’s mothers and 20%
of the autistic children’s mothers; none of the CP chil-
dren’s mothers reported that they received emotional
support from a specialist. However, 43.6% of the
mothers stated that they did not receive sufficient
emotional support. The emotional support received
was “insufficient” by 8.6% of CP children’s mothers,
8.3% of the intellectually disabled children’s mothers,
and 26.7% of the autistic children’s mothers.
As seen in Table 4, 80.4% of the CP children’s
mothers, 68.6% of the intellectually disabled children’s
JSPN Vol. 12, No. 4, October, 2007
Mental retardation Autism Total
N % N % N %
24 68.6 14 82.4 79 76.7
11 31.4 3 17.6 24 23.3
mothers, and 82.4% of the autistic children’s mothers
reported changes in their social lives. There was no
statistically significant relationship between children’s
disability and the status of change in their mothers’
social lives (χ2 = .370, p > .05). Furthermore, 85.4% of
the CP children’s mothers, 72.0% of the intellectually
disabled children’s mothers, and 71.4% of the autistic
children’s mothers stated that they had a higher
percentage of changes in their social lives because
they were not able to set aside time for themselves and
for other members of their families.
A small percentage of the mothers of CP children
(5.9%), intellectually disabled children (8.6%), and
autistic children (8.6%) stated that their families’ work
lives had been affected. Seven of the mothers had quit
work to care for their children.
When we investigated the status of changes in
relationships within the family caused by having a
disabled child, we found that there were changes in
27.5% of the CP children’s families, 40.0% of the intel-
lectually disabled children’s families, and 41.2% of the
autistic children’s families. These changes were the
source of arguments between spouses in 42.9% of
the CP, intellectually disabled, and autistic children’s
families (Table 5).
As a result of the problems experienced by having
a disabled child, 77.8% of the CP children’s families,
90% of the intellectually disabled children’s families,
and 76.5% of the autistic children’s families wanted to
receive support from nurses. It was determined that
245
Difficulties Experienced by Families With Disabled Children

Table 5. Distribution of Disabled Children’s Diagnoses According to Changes Made in Family Life After
Having a Disabled Child
Diagnoses of disabled children’s

Cerebral palsy Mental retardation Autism Total

Changes in internal
family relationships N % N % N % N %

Yes 14 27.5 14 40.0 7 41.2 35 34.0

No 37 72.5 21 60.0 10 58.8 68 66.0
Changes experienced (n = 35)
Arguments between spouses 6 42.9 6 42.9 3 42.9 15 42.9
Broken relationships between family members 2 14.3 2 14.3 — — 4 11.4
Lack of peace in the family 5 35.7 6 42.9 3 42.9 14 40.0
Divorce 1 7.1 — — 1 14.3 2 5.7

62.9% of the CP children’s families, 77.8% of the intel-
lectually disabled children’s families, and 84.6% of
the autistic children’s families wanted information and
counseling about their children’s condition. Whereas
54.3% of the CP children’s families and 22.2% of the
intellectually disabled children’s families wanted
support for home care, only 7.7% of the autistic chil-
dren’s families wanted support for home care. Whereas
38.5% of the autistic children’s families wanted psy-
chological support, only 7.4% of the intellectually
disabled and 5.7% of the CP children’s families
wanted psychological support.
Discussion
Daily care for children with disabilities is different
from that of normal children because of their special
care needs. Some or all of disabled children’s activities
of daily living are dependent on someone else. This
situation may cause families of disabled children to
experience difficulty with their care (Siklos & Kerns,
2006). In our study, caretakers for the CP children
experienced the most difficulties with feeding, dressing–
undressing, assistance with elimination, bathing, and
carrying. This can be explained by the fact that CP
children are more physically dependent than intel-
lectually disabled and autistic children.
Caretakers for the intellectually disabled and autistic
children experienced more difficulty with communi-
cating and having to constantly monitor/give attention
to their disabled children than the caretakers of CP
children. This can be explained by the lower intel-
lectual ability and inadequate communication skills of
intellectually disabled and autistic children. Several
studies found that the majority of disabled children
needed supervision or extra assistance in the majority
of their activities of daily living (Emerson, 2003;
Pelchat & Lefebvre, 2004; Raina et al., 2005; Roberts &
Lawton, 2001; Taanlia et al., 2002). In one study, nearly
one third of parents reported having been denied child
care due to their child’s disability, and 23% of parents
who lacked child care reported they were still seeking
it for their disabled child (Cutler & Gilkerson, 2002).
Zigler and Lang (1991) have identified a host of barriers
parents face in securing child care for their disabled chil-
dren, including inadequate numbers of trained caregivers
who can effectively meet disabled children’s needs,
prejudice and fear about disability, limited knowledge
regarding the nature of disabilities, and transportation
barriers for children with mobility impairments.

246 JSPN Vol. 12, No. 4, October, 2007

Ehrle, Adams, and Tout (2001) found that half of chil-
dren under the age of 3 from low-income families
were cared for by a relative, most often a grandparent.
Approximately one third of these children were in
care provided by another family (Ehrle et al.).
It is extremely important that the caretakers of
disabled children are supported. In this study, the
majority of the families received support from mem-
bers of their own families. The reason why there were
few families who received support outside of their
families may be because of inadequate social supports
for families of disabled children and the fact that
institutional care for disabled children and their
families is not given for home care in Turkey.
The needs of families in their home environments
have not been evaluated, and their needs have not
been adequately determined. More than half of the
families stated that the support that they receive is
insufficient. The lack of difference in this need, according
to the child’s disability, shows that families have a
need for professional support in daily care.
The care and treatment of a disabled child also
creates difficulties financially for families. While the
economic load that every child brings to his or her
family is very high, the care, treatment, and education
of a disabled child brings an even greater burden to
the family. Added to that, the loss of the mother or
father’s income when they have to quit work to care
for the disabled child causes the family to experience
financial difficulty. Fujiura and Yamaki (2000) deter-
mined that children with disabilities are significantly
more likely to live in impoverished households; 28%
of disabled children live in households with incomes
below the federal poverty level. Meanwhile, nonpoor
families spend an average of 7% of their income on
child care (Smith, 2000), and families living below the
federal poverty level spend an average of 35% of their
total income on child care (Smith). This places enor-
mous stress on the budgets of low-income families
(Schulman, 2000).
Studies have determined that the families of
disabled children do not receive sufficient financial
JSPN Vol. 12, No. 4, October, 2007
support and that they experience financial difficulties
(Christina & Patrica, 1992; Emerson, 2003). Similar
studies conducted in Turkey have also shown that
families of disabled children do not receive adequate
financial support and that they experience financial
difficulties (Gökcan, 2002; Mutlu et al., 2003; Urhan,
2002). Studies have shown that parents with disabled
children do not receive subsidies because they are
unaware of the available programs or believe that they
are not eligible (Blau & Tekin, 2001; Shlay, Weinraub,
Harmon, & Tran, 2004). Furthermore, applications for
child care subsidies may be withdrawn because the
legal procedures take such a long time (Ganow, 2000;
Meyers, Heintze, & Wolf, 2002).
In a review of the literature, it was seen that more
mothers than fathers are the primary caretakers for
their disabled children (Çetinkaya, 1997; Green, 2003;
Pelchat, Lefebvre, & Perreault, 2003; Raina et al., 2005).
This is the reason why the work lives, social lives,
and emotional states of mothers are more affected.
Previous research has shown that because the majority
of the responsibility for child care in families with a
disabled child falls on the mothers, they abandon the
other roles of motherhood and decrease their parti-
cipation in social activities (Black, 1981; Bright &
Hayward, 1997; Ong, Chandran, & Peng, 1999; Shapiro
& Tittle, 1990; Tekinalp, 2001).
Having a disabled child has a negative effect on
parental functions, and the daily life of mothers is
affected at a higher rate than that of fathers (Emerson,
2003; Krauss, 1993; Pelchat et al., 2003; Taanlia, Jarvelin,
& Kokkaun, 1999). Studies have also determined
that mothers are more affected emotionally by their
children’s condition than fathers (Godress et al., 2005;
Midence, 1994). Pelchat and colleagues found that the
fathers’ expectations are attuned to life outside the home
and the actual day-to-day tasks related to the child’s
care are not their priority. However, having a disabled
child can be a source of stress for fathers. The primary
causes for this stress are financial difficulties, emo-
tional tension, and limitations in social activities
(Krauss; Pelchat et al.).
247
Difficulties Experienced by Families With Disabled Children
In this study, more than half (57.3%) of the mothers
experienced deep sadness because they have a disabled
child. This was also the case in the study conducted in
Turkey by Özsenol and colleagues (2003), who found
that the majority of mothers of disabled children
experience intense sadness. Mothers and fathers of
disabled children in China have been found to experi-
ence irritation, sadness, stress, worry, anxiety, fear,
burnout, and loss of control (Ma, Lai, & Han Pun, 2002).
Because of the emotions that they experienced, 71.8%
of the mothers wanted emotional support. More than
half of the mothers (56.8%) received this support
from another family member, but 52.7% stated that
this support was not sufficient. For this reason, the
support may need to be from a professional. Hassal,
Rose, and McDonald (2005) also found that there is a
strong correlation between mother and father’s stress
and family support.
In this study, 20.4% of the mothers were blamed by
the family for having a child with a disability. This may
be a result of the cultural norm in Turkey for child
care and raising to be primarily the mother’s responsi-
bility, and when she has used medications, smoked
cigarettes, or has not had good nutrition during her
pregnancy, the presumed result is the disabled child.
Additionally, mothers may be blamed for not being
able to adequately care for their child after birth.
The mothers stated that they received support from
other members of the family for the emotions that they
experienced, but more than half stated that this sup-
port was insufficient. The support that a family could
receive from a professional, however, could facilitate
the family’s adjustment to a disabled child and coping
with the stress and difficulties the family experiences
(Trulsson & Klingberg, 2003). For this reason, it is
important that one of the supports that a family
receives be access to a professional. Nurses are the
individuals who can give professional support to
families and children because they come in contact
with disabled children and their families in almost
every area (hospital, health clinic, school, rehabilitation
center, etc.). These data present the need to consider
248
the individuals with a disabled child from a psycho-
logical point of view.
The social lives of 76.7% of the mothers were
affected, and this was primarily a result of their not
being able to set aside time for themselves and other
members of the family. Similar results were obtained
by another study conducted in Turkey that found
mothers who were caring for disabled children did not
have enough time to set aside for the other members
of the family (Mutlu et al., 2003). In addition, 6.8% of
the mothers stated that they quit work to care for their
child. These data may be explained by the fact that the
mothers were primarily responsible for the care of the
disabled child and their lack of sufficient support for
that care. In small-scale studies, mothers of disabled
children have reported that a lack of affordable and
adequate child care limited their ability to maintain
employment (Brandon & Hofferth, 2003; Fink, 1988;
Shearn & Todd, 2000).
In the examination of the status of changes in internal
family relationships, it was determined that 34.0%
of the families had changes and that 42.9% of the
changes in families of children with CP, intellectual
disability, and autism results in arguments between
spouses. Also in this study, 5.7% of the families had
divorced after the birth of a disabled child. Because of
the additional stress that a disabled child brings to
family life and because of spouses blaming each other,
there may be changes in relationships within the
family and in marital relationships. In a study con-
ducted by Kulagina (2003), it was determined that
77.5% of families experienced changes in relationships
within the family, and 4.5% of the parents divorced
after the birth of a disabled child.
The family is the primary institution for the founda-
tion of a society and for maintaining its presence. The
family is the primary environment for meeting basic
needs, such as nutrition, care, need for love, emotional
development, education, acquiring cultural values,
healthy intellectual development, etc., and holds a
very important place in the lives of individuals. In
particular, the family is important for being the place
JSPN Vol. 12, No. 4, October, 2007
where children learn some behavioral models for life,
some rules and roles for social interactions, basic habits
for daily relationships, and lay their foundations for
all of these skills. For this reason, every child, whether
normal or disabled, needs to grow up within a family
to be able to develop (Abidoglu & Gümüsçü, 2000;
Gökcan, 2002). For these reasons, a healthy family
environment is extremely important for the child’s
development.
In the present study, the majority of the families with
disabled children had two parents, and the divorce
rate was very low. However, Parish and Cloud (2006)
reported that 51% of families with disabled children
are single-parent families. This difference may be a
result of the difference between Western and Turkish
societies. In Turkish society, the cultural approach is
the protection of the unity of the family. At the same
time, in examining Table 1, it can be seen that the
number of working mothers was very low in the present
study. These women are not economically independent
and may be tied to their husbands for the continuation
of their economic and social lives. In general, divorced
women are perceived negatively in the culture, and
with the addition of economic dependence, this may
be why the divorce rate is so low.
In the present study, the majority (81.5%) of fam-
ilies of disabled children wanted support from nurses.
More than half of the families wanted information
and counseling about their child’s condition from the
nurses. This may be explained by the families having
insufficient information about their child’s condition.
In a study by Taanlia and Javalin (1998), the families of
disabled children primarily wanted information about
their child’s diagnosis and treatment from doctors and
nurses. Pain (1999) also determined that the parents of
disabled children’s source of information was profes-
sionals. Studies have determined that parents wanted
more information, more flexibility, and more choice, and
that current levels of respite provision were insuffi-
cient (Beresford, 1994; McConkey & Adams 2000).
Studies found that parents are also dissatisfied
because they do not feel that they are respected as
JSPN Vol. 12, No. 4, October, 2007
partners who have parental expertise and competence
(Balling & McCubbin, 2001; Fisher, 2001). Lindblad,
Rasmussen, and Sandman (2005) found that parents
experience support and become invigorated when
professionals acknowledge them as experts on their
child. According to Callery (1997), an integration of
parental and professional knowledge has potential
benefits in the management of children’s health prob-
lems. Also, Lindblad and colleagues determined that
sharing would not be possible if the parent and child
were not acknowledged as persons, because the trust
that is a prerequisite for sharing is an integral part of
the acknowledgment. Strandberg, Norberg, and Jansson
(2000) found that lack of sharing with professionals and
experiences of not being seen as important as patient
and carer were found to be viewed as very hard and
often result in a struggle to receive care. Friedemann
(1989) emphasized that a genuine concern for each
family member is essential for family well-being.
In this study, more than half (54.3%) of the CP chil-
dren’s families wanted help with home care. This can
be explained by the CP children being more physically
dependent. The families of 38.5% of the autistic children
wanted psychological support. This can explain the
finding that 58.8% of the mothers of autistic children
stated that they felt overwhelmed.
Conclusions
The majority of families with disabled children
experience difficulties, the mothers have almost all
of the caretaker responsibilities, and mothers do not
receive adequate support.
Two in five of the mothers were blamed by family
members for having a disabled child, and nearly half
of the individuals doing the blaming were the families
of their husbands.
More than half of the mothers experienced deep
sadness and feelings of being overwhelmed, and two
thirds experienced anger. The mothers stated that they
did not receive sufficient emotional support. Their social
lives, work lives, and family relationships were affected.
249
Difficulties Experienced by Families With Disabled Children
The majority of families wanted support from nurses.
In general, the families wanted information and
counseling about the child’s condition from nurses
and wanted to receive support for home care and
psychological support for themselves.
How Do I Apply This Information to
Nursing Practice?
The findings obtained from this study have made
clear the importance of providing families with profes-
sional support by evaluating the family of a disabled
child as a whole and coordinating their care as a result
of this evaluation. Ensuring the continuation of family-
centered care may be important in decreasing the prob-
lems that they experience. This study revealed that
mothers may be blamed by their husbands and their
husbands’ families for the birth of a disabled child. For
this reason, accepting the mother and father together
with the birth of a disabled child and ensuring they
receive necessary counseling and support may be
important in helping to solve this problem. Nurses have
important roles in the fulfillment of all of these
responsibilities. As the nurse is very familiar with the
healthcare system, he or she is in an excellent position
to assist the family in identifying resources and accessing
these resources. In addition, nurses are an important sup-
port system. Having a nurse organize and coordinate
the disabled child and family’s care may facilitate the
resolution of problems that the family experiences. When
nurses can carry out these functions, they will have an
important place in the protection of families and children.
Acknowledgment. Thanks are due to Nihat Sözmen
Disabled Child Care and Rehabilitation Center, Izem
Disabled Child Education and Rehabilitation Private
Center, and Umudum Cognitive and Physically Dis-
abled Child Education Private Center that facilitated
the work, and to all the parents with disabled children
who participated.
250
Author contact: sabire00@yahoo.com, with a copy to the
Editor: roxie.foster@uchsc.edu
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