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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. This study was designed to determine Esine Sen, RN, MSc, is a pediatric nurse, Pediatric Clinic,
Mersin University School of Medicine Research and
the difficulties experienced by families with Administration Hospital; and Sabire Yurtsever, PhD, RN,
is Assistant Professor, School of Health, Mersin University,
disabled children. Mersin, Turkey.

DESIGN AND METHOD. This descriptive research Background

study was carried out in one public and two The World Health Organization has defined dis-
ability as an inability or handicap that interferes with an
private rehabilitation centers. A questionnaire individual’s ability to have a lifestyle that is considered
normal for their age, gender, and social and cultural
was used for data collection. state (Ocakçı, 2002b; Turkey Prime Minister Administra-
tion for Disabled People, 2002). The American Health
RESULTS. 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
about their child’s condition. Mothers felt severe children at his or her age can do, or, said another way, a
child who cannot fully use all of his or her physical,
sadness, and they indicated that after having a mental, and social abilities for various reasons (Urhan,
2002). In general, disability in children can be seen
disabled child, their social life, working life, and individually or together as several physical, develop-
mental, cognitive, or affective disabilities.
family relationships were all affected. Families also Today, intellectually, physically, or emotionally
disabled individuals comprise a significant portion
have financial problems. of the world population. According to World Health
Organization statistics, it is estimated that disabled
PRACTICE IMPLICATIONS. Parents with a disabled
individuals comprise 10% of the population of developed
countries and 12% of developing countries (Baykan,
child need support from professionals. Nurses have
2003). An estimated 12% of children, ages 5–17 years
(Hogan, Msall, Rogers, & Avery, 1997), or approxi-
a vital role in providing support for these families.
mately 6.6 million children in 2000 (U.S. Census Bureau,
2001) had disabling conditions. In Turkey, it is estimated
Search terms: Nursing, parents of disabled
that there are 9 million children, ages 0–18 years, who
are disabled or have special needs. Every seven to eight
children, support
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
First received June 23, 2006; Revision received December 27, 2006; disabled, they experience mixed emotions. The general
Accepted for publication May 27, 2007. reactions of parents can be grouped under three main

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

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


categories (Abidoglu & Gümüsçü, 2000; Kearney & Secondary Reactions
Grifin, 2001).
Feelings of guilt. This reaction is observed intensely
Primary Reactions in every family. Guilt feelings are generally caused
by parents thinking that they caused their child to be
Shock. Frequently this is the first reaction dis- disabled or that they are being punished by God for
played by parents when they learn that they have a some mistakes they have made. Guilt in parents of a
disabled child because their family is faced with a disabled child may help them keep their anger against
situation that they did not expect and for which they the child under control. Out-of-control anger can be
have not been prepared. This state is generally char- seen sometimes in parents who are in complete denial
acterized by crying, lack of response, and feelings of (Abidoglu & Gümüsçü, 2000; Wittert, 2002).
helplessness. In a study conducted by Özsenol and In studies conducted with families of disabled chil-
colleagues (2003) in Turkey, the most frequently experi- dren, it has been determined that mothers and fathers
enced emotions of parents when they learned they had frequently feel responsible for their disabled child’s
a disabled child were shock, helplessness, hopelessness, condition and experience feelings of guilt. In addition,
and disappointment. the mothers and fathers are left to cope with their
Denial. Some parents do not accept that their child child’s diagnosis of disability as well as the complex
has a disability. Denial, which is a defense mechanism, emotions they are experiencing (Foster, O’Brien, &
is caused by fear of facing something that is unknown. McAllister, 2004; Godress, Ozgul, Owen, & Foley-Evans,
Concern about the child’s future, discontentment, and 2005; Pelchat & Lefebvre, 2004).
anticipation of the responsibilities that need to be Indecision. While some parents are able to adapt
assumed may cause the family to deny that the child is relatively quickly to the fact that their child is dis-
disabled (Abidoglu & Gümüsçü, 2000; Pott & Mondiecs, abled, other parents do not. Indecision about the
2002; Wittert, 2002). situation can be the cause for family members blaming
Suffering and depression. Having a disabled child or neglecting one another (Abidoglu & Gümüsçü,
means the destruction of parents’ dreams of their ideal 2000).
child (Schmitke & Schlomann, 2002). The suffering that Anger. Anger can be a major obstacle to parents’
is experienced in this type of situation is equal to the acceptance of their disabled child. Anger is gener-
suffering experienced with the loss of a loved one. Suf- ally seen in two ways. In the first way, the parents
fering is a feeling that facilitates a family’s acceptance ask each other, “Why us?” This type of anger is gener-
of the truth that they have a disabled child. Depression, ally accepted to be a healthy response. The second
though, occurs at the end of the suffering process. The type, however, is when anger is directed at someone
majority of parents become depressed when they believe who is not the source of the problem. Anger
that they do not have the strength necessary to face the directed at the disabled child is not accepted by
responsibilities they have to assume. As a result of society (Abidoglu & Gümüsçü, 2000; Schmitke &
suffering and depression, withdrawal and avoidance Schlomann, 2002).
of social activities can be seen in families. On the other Shame. Parents perceive their child’s handicap as
hand, when these behaviors are not excessive, they help their own mistake because they see their child as an
the family to access their former strength. It is not known extension of themselves; therefore, they avoid being
when suffering and depression completely resolve. seen. Generally, families experience embarrassment
This time interval can vary from family to family when they face concern from others about their chil-
(Abidoglu & Gümüsçü, 2000; Wittert, 2002). dren (Abidoglu & Gümüsçü, 2000).

JSPN Vol. 12, No. 4, October, 2007 239


Difficulties Experienced by Families With Disabled Children

Tertiary Reactions ment for their child’s healthy growth and development.
The parents of a disabled child, however, in addition
Bargaining. The important thing for a family is for to these responsibilities, are also burdened with addi-
their disabled child to be like a healthy child. The family tional responsibilities, such as teaching the disabled
may bargain with anyone who can make this happen. child skills and doing physiotherapy. For this reason,
People who are bargained with may be healthcare pro- the parents of a disabled child need additional money
fessionals, mediums, or others who think they have and time (Emerson, 2003; Roberts & Lawton, 2001).
magical powers, or even God. For the majority of the Because parents need extra time for their disabled child,
time, parents will not easily accept that their child is they do not have enough time for themselves, each
disabled even if they receive information and help from other, or their other children. For this reason, families
professionals (Abidoglu & Gümüsçü, 2000). may need to make changes in their social lives. Having
Acceptance and adaptation. In this phase, the family a disabled child may also have a negative effect on
tries to get to know the disabled child and understand marital relationships. The birth of a disabled child may
and solve their problems; however, the negative feel- cause tension as spouses blame each other.
ings that are experienced in the other phases never Families with disabled children may also experi-
completely disappear. Adaptation is an extension of ence economic difficulties. Studies have reported that
the acceptance phase transformed into action. Adapta- families of disabled children have financial difficulty
tion is a process that never completely ends. The adap- (Christina & Patrica, 1992; Gökcan, 2002; Mutlu, Demir,
tation process is significantly affected by the personal Kerem, & Livanelioglu 2003; Urhan, 2002). In addition,
characteristics of the parents. This process begins after because one parent may be responsible for the care of
a family accepts that they cannot change the fact that the disabled child, that parent may have to stop work-
they have a disabled child. ing, which causes loss of income and financial diffi-
The child’s disability may make it necessary for all culty for the family (Çavusoglu, 2002; Karancı, 1997;
the members of the family to sacrifice for the sake of Taanlia, Syrjala, Kokkoken, & Jarvelin, 2002; Yurdakul,
the disabled child. Having one disabled family mem- Gırlı, Özekes, & Sarısoy, 2002).
ber may affect the relationships within the family, As stated above, the family who has a disabled
the family’s economic situation, the family’s daily child may be in a crisis situation. The difficulties (e.g.,
lifestyle, and the family’s plans and expectations for care, psychological, social, and economic) experienced
the future. This crisis situation may be the cause for by family members during the process of adaptation
members of the family to experience stress (Emerson, toward living with the disabled child can lead to con-
2003; Foster et al., 2004; Green, 2003; Kayhan, 1995; flict within the family; and there may be changes in
Pelchat & Lefebvre, 2004; Raina et al., 2005). In a study individual roles and functions within the family. The
conducted by Brinchmann (1999), a high level of stress quality of life for family members is negatively affected
was found in the parents of disabled children. Among by these problems. As can be seen here, a holistic
the most significant factors creating stress in the fam- approach to care in families with disabled children is
ily of a disabled child were the child’s developmental gaining importance. However, studies conducted on
difficulties, health problems, and difficulties with this subject show that healthcare personnel have been
care because of the child’s dependency (Harden, 2005; seen to be inadequate in providing support and guid-
Özsenol et al., 2003). Related to these factors was the ance to families during this extremely distressing time
family’s concern for the future of their child. (Balling & McCubbin, 2001; Fisher, 2001; Hall, 1996).
Parents of a normal child have the responsibility to Due to inadequate support from healthcare personnel,
meet the needs of and prepare an appropriate environ- families try to cope with crisis situations on their

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


own and try to find the most appropriate solutions knowing their sources for support. This approach will
themselves. However, the solutions they find are not increase the quality of care that is given to the disabled
always the healthiest choices. child and family.
It is essential to provide family-centered care, using
a team approach, to families with disabled children, Purpose
while being aware of the problems that the child can
create for the family. It is important for families with This study was conducted to determine the difficulties
disabled children to receive support in adapting to experienced by families in the daily care of disabled
their children and the difficulties they experience. children, including the financial and psychosocial
Receiving support from a professional may facilitate difficulties.
the family’s adaptation to the child and their ability to
cope with all the difficulties. One of the professions Method
that may provide this kind of support is nursing. The
nurse has a closer relationship with the individual, Design and Setting
family, and community. The nurse is also easier to
reach than the other members of the healthcare team. 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
The difficulties (e.g., care, psychological, three private rehabilitation centers located in Mersin
Province did not agree to allow the research to be
social, and economic) experienced by family conducted in their facility.

members during the process of adaptation Participants

toward living with the disabled child can The research sample was comprised of mothers
with primary responsibility for 103 disabled children,
lead to conflict within the family; and there between the ages of 3 and 18 years, registered in these
centers; 51 of the children have cerebral palsy (CP), 35
may be changes in individual roles and have an intellectual disability, and 17 have autism.
Because there were higher numbers of children with
functions within the family. 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
The nurse, while working with disabled children, between 24 and 34 years old, and their mean age was
must consider the family and child as a whole and 26.2 years. The descriptive characteristics of the
support the family in coping with their crisis and the participants are presented in Table 1.
difficulties they are facing. For nurses to be effective as Five of the mothers with a child enrolled in the
an important support system, they need to adequately private centers did not agree to participate. The 10
know the child and family and be able to determine mothers who participated in the pilot test were not
the difficulties experienced by the family, including included in the study.

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


Cognitive and Physically Handicapped Private
The research data were collected using a “Personal Education Center. At the conclusion of this pilot test,
Information Form,” which was developed by the revisions were made to one question that was difficult
investigators based on information in the literature. to understand.
This form consists of 50 questions. The first 22 questions
are directed at determining the sociodemographic Procedures
characteristics of the family and disabled child; and
semistructured questions 23–50 are directed at deter- Before starting the data collection, the research aim,
mining the difficulties faced by the family (difficulties method, and data collection form were explained to
experienced in daily care, financial difficulties, psycho- and written permission was received from the Turkish
logical difficulties, and difficulties experienced in Republic Ministry’s Social Services and Child Protection
their social lives) and the support that they have Institution Province Directorate; written permission to
received and want to receive to help with the diffi- conduct the research was also obtained from the
culties they experience. To determine the level of administrators of the private rehabilitation centers.
support, the family rates their support as “adequate,” Interviews were conducted with parents who had
“partially adequate,” or “inadequate.” primary responsibility for the care of their disabled
The content validity of the data collection form was children. Because all of these parents were mothers, the
evaluated before data collection by administering it 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 were 13–18 years old. Seventeen of the children had
and method of the study, that their participation was a chronic illness; for 13 of these children the chronic
voluntary, and that they could withdraw from the study illness was epilepsy, and 15 of the children were on a
at any time, after which they gave their informed consent. continuous medication.
Mothers who agreed to participate in the research It was determined that 21.4% of the families had a
were met in face-to-face interviews for the completion mother and father who were blood relatives. This con-
of the personal information form, which took approxi- sanguinity of the parents was present for 21.4% of the
mately 40–60 min. families with a CP child, 22.9% of the families with an
The data were collected within a 6-month period and intellectually disabled child, and 23.5% of the families
evaluated using the SPSS for Windows 10.0 (Statistical with an autistic child. The majority of the sample
Package for Social Sciences for Windows) package (86.4%) were nuclear families, 7.8% were single-parent
program with percentage. families due to death of a parent, and 4.9% were single-
parent families from divorce. Half of the families
Findings (49.5%) had balanced family income–expenditures,
half (50.1%) had less income than expenditures, and
It was determined that 57.3% of the mothers were none of the families had surplus of income. The majority
in the 24- to 34-year-old age group. The percentages of of the families in the sample (89.3%) had one to three
mothers with elementary school education were 45.1% children, and 2.9% had two disabled children.
of mothers with CP children, 60% with intellectual Difficulty in caring for the disabled child was expe-
disability, and 41.2% with autism. The overwhelming rienced by 80.4% of the CP children’s caretakers, 68.6%
majority (94.2%) of the mothers were not employed of the intellectually disabled children’s caretakers, and
(see Table 1). 70.6% of the autistic children’s caretakers. The distri-
The age group distribution of the disabled children bution of the children’s disabilities, according to the
in the research was as follows: (a) 41.7% were 3–6 difficulties in home care experienced by their care-
years old, (b) 47.6% were 7–12 years old, and (c) 10.7% 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 Autism Total


Feelings experienced
by their mothers (na) N % N % N % N %

Deep sadness 31 60.8 21 60.0 7 41.2 59 57.3


Feeling overwhelmed 29 56.9 17 48.6 10 58.8 56 54.4
Anger 20 39.2 10 28.6 8 47.1 38 36.9
Loneliness 3 5.9 3 8.6 2 11.8 8 7.8
a
n doubled.

difficulties were experienced by the CP children’s 49.0% of the families with CP children, 57.1% of the
caretakers for activities such as feeding (73.8%), families with intellectually disabled children, and 23.5%
dressing–undressing (24.4%), assisting with elimination of the families with autistic children experienced
(90.2%), bathing (78.0%), and carrying (82.9%). The financial difficulties.
caretakers of the intellectually disabled and autistic It was found that 28.2% of the families received
children experienced the same percentage of difficul- financial support: almost 29% of the families with CP
ties with communicating (16.7%) and continuous children, 20.0% of the families of intellectually dis-
monitoring/attention (83.3%), which were higher than abled children, and 40.0% of the families with autistic
the caretakers for the CP children. Support for daily children received financial support.
care was received by 80.4% of the caretakers for CP Among the families who received financial support,
children, 68.6% of the caretakers for the intellectually 96.6% of them reported that they received it from close
disabled children, and 70.6% of the caretakers for the relatives (87.5% of the families with CP children and
autistic children. 100.0% of the families with intellectually disabled and
In the investigation of the individuals who gave autistic children reported that their source of financial
support in the care, it was determined that the other support was close relatives). Eighty percent of the
nuclear family members gave more support than close families stated that the support that they received was
relatives or friends. Another family member supported “somewhat sufficient.” Seventy-five percent of the
73.3% of the CP children’s caretakers, 84.6% of the CP children’s families, 100.0% of the intellectually
intellectually disabled children’s caretakers, and 62.5% disabled children’s families, and 50.0% of the autistic
of the autistic children’s caretakers. children’s families stated that the support that they
In the examination of the sufficiency level of the received was “somewhat sufficient.”
support received, 53.3% of the CP children’s caretakers As shown in Table 3, the mothers stated that they
and 61.5% of the intellectually disabled children’s experienced deep sadness (57.3%), feeling overwhelmed
caretakers stated that they had “somewhat sufficient” (54.4%), anger (36.9%), and loneliness (7.8%). In addi-
support, but only 17.6% of the autistic children’s care- tion, in response to the question, “What kind of reaction
takers stated that they received sufficient support. was given by those around you to the birth of your
Almost half of the families (47.6%) of all of the disabled child?” 22.5% of the CP children’s mothers,
disabled children experienced financial difficulties: 17.1% of the intellectually disabled children’s mothers,

244 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 Mental retardation Autism Total


Changes in disabled
children’s mothers’ social lives N % N % N % N %

Changes 41 80.4 24 68.6 14 82.4 79 76.7


No changes 10 19.6 11 31.4 3 17.6 24 23.3

and 11.8% of the autistic children’s mothers stated that mothers, and 82.4% of the autistic children’s mothers
they were blamed by their family for their children’s reported changes in their social lives. There was no
disability. In the investigation of the people who statistically significant relationship between children’s
blame the mother, 53.8% of the mothers of CP children disability and the status of change in their mothers’
were blamed by their husband’s family; 50.0% of the social lives (χ2 = .370, p > .05). Furthermore, 85.4% of
intellectually disabled and 100.0% of the autistic the CP children’s mothers, 72.0% of the intellectually
children’s mothers were blamed by their husbands. disabled children’s mothers, and 71.4% of the autistic
It was determined that 71.8% of all the mothers children’s mothers stated that they had a higher
received emotional support (68.6% of the CP children’s percentage of changes in their social lives because
mothers, 68.6% of the intellectually disabled children’s they were not able to set aside time for themselves and
mothers, and 88.8% of the autistic children’s mothers). for other members of their families.
More than half (56.8%) of the mothers who stated that A small percentage of the mothers of CP children
they received emotional support received that support (5.9%), intellectually disabled children (8.6%), and
from another family member and 9.5% from a special- autistic children (8.6%) stated that their families’ work
ist. Other members of the family provided emotional lives had been affected. Seven of the mothers had quit
support to 54.3% of the mothers of CP children, 58.3% work to care for their children.
of the mothers of intellectually disabled children, and When we investigated the status of changes in
60.0% of the mothers of autistic children. The source relationships within the family caused by having a
of emotional support was a specialist for 16.7% of the disabled child, we found that there were changes in
intellectually disabled children’s mothers and 20% 27.5% of the CP children’s families, 40.0% of the intel-
of the autistic children’s mothers; none of the CP chil- lectually disabled children’s families, and 41.2% of the
dren’s mothers reported that they received emotional autistic children’s families. These changes were the
support from a specialist. However, 43.6% of the source of arguments between spouses in 42.9% of
mothers stated that they did not receive sufficient the CP, intellectually disabled, and autistic children’s
emotional support. The emotional support received families (Table 5).
was “insufficient” by 8.6% of CP children’s mothers, As a result of the problems experienced by having
8.3% of the intellectually disabled children’s mothers, a disabled child, 77.8% of the CP children’s families,
and 26.7% of the autistic children’s mothers. 90% of the intellectually disabled children’s families,
As seen in Table 4, 80.4% of the CP children’s and 76.5% of the autistic children’s families wanted to
mothers, 68.6% of the intellectually disabled children’s receive support from nurses. It was determined that

JSPN Vol. 12, No. 4, October, 2007 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- children are more physically dependent than intel-
lectually disabled children’s families, and 84.6% of lectually disabled and autistic children.
the autistic children’s families wanted information and Caretakers for the intellectually disabled and autistic
counseling about their children’s condition. Whereas children experienced more difficulty with communi-
54.3% of the CP children’s families and 22.2% of the cating and having to constantly monitor/give attention
intellectually disabled children’s families wanted to their disabled children than the caretakers of CP
support for home care, only 7.7% of the autistic chil- children. This can be explained by the lower intel-
dren’s families wanted support for home care. Whereas lectual ability and inadequate communication skills of
38.5% of the autistic children’s families wanted psy- intellectually disabled and autistic children. Several
chological support, only 7.4% of the intellectually studies found that the majority of disabled children
disabled and 5.7% of the CP children’s families needed supervision or extra assistance in the majority
wanted psychological support. of their activities of daily living (Emerson, 2003;
Pelchat & Lefebvre, 2004; Raina et al., 2005; Roberts &
Discussion Lawton, 2001; Taanlia et al., 2002). In one study, nearly
one third of parents reported having been denied child
Daily care for children with disabilities is different care due to their child’s disability, and 23% of parents
from that of normal children because of their special who lacked child care reported they were still seeking
care needs. Some or all of disabled children’s activities it for their disabled child (Cutler & Gilkerson, 2002).
of daily living are dependent on someone else. This Zigler and Lang (1991) have identified a host of barriers
situation may cause families of disabled children to parents face in securing child care for their disabled chil-
experience difficulty with their care (Siklos & Kerns, dren, including inadequate numbers of trained caregivers
2006). In our study, caretakers for the CP children who can effectively meet disabled children’s needs,
experienced the most difficulties with feeding, dressing– prejudice and fear about disability, limited knowledge
undressing, assistance with elimination, bathing, and regarding the nature of disabilities, and transportation
carrying. This can be explained by the fact that CP barriers for children with mobility impairments.

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


Ehrle, Adams, and Tout (2001) found that half of chil- support and that they experience financial difficulties
dren under the age of 3 from low-income families (Christina & Patrica, 1992; Emerson, 2003). Similar
were cared for by a relative, most often a grandparent. studies conducted in Turkey have also shown that
Approximately one third of these children were in families of disabled children do not receive adequate
care provided by another family (Ehrle et al.). financial support and that they experience financial
It is extremely important that the caretakers of difficulties (Gökcan, 2002; Mutlu et al., 2003; Urhan,
disabled children are supported. In this study, the 2002). Studies have shown that parents with disabled
majority of the families received support from mem- children do not receive subsidies because they are
bers of their own families. The reason why there were unaware of the available programs or believe that they
few families who received support outside of their are not eligible (Blau & Tekin, 2001; Shlay, Weinraub,
families may be because of inadequate social supports Harmon, & Tran, 2004). Furthermore, applications for
for families of disabled children and the fact that child care subsidies may be withdrawn because the
institutional care for disabled children and their legal procedures take such a long time (Ganow, 2000;
families is not given for home care in Turkey. Meyers, Heintze, & Wolf, 2002).
The needs of families in their home environments In a review of the literature, it was seen that more
have not been evaluated, and their needs have not mothers than fathers are the primary caretakers for
been adequately determined. More than half of the their disabled children (Çetinkaya, 1997; Green, 2003;
families stated that the support that they receive is Pelchat, Lefebvre, & Perreault, 2003; Raina et al., 2005).
insufficient. The lack of difference in this need, according This is the reason why the work lives, social lives,
to the child’s disability, shows that families have a and emotional states of mothers are more affected.
need for professional support in daily care. Previous research has shown that because the majority
The care and treatment of a disabled child also of the responsibility for child care in families with a
creates difficulties financially for families. While the disabled child falls on the mothers, they abandon the
economic load that every child brings to his or her other roles of motherhood and decrease their parti-
family is very high, the care, treatment, and education cipation in social activities (Black, 1981; Bright &
of a disabled child brings an even greater burden to Hayward, 1997; Ong, Chandran, & Peng, 1999; Shapiro
the family. Added to that, the loss of the mother or & Tittle, 1990; Tekinalp, 2001).
father’s income when they have to quit work to care Having a disabled child has a negative effect on
for the disabled child causes the family to experience parental functions, and the daily life of mothers is
financial difficulty. Fujiura and Yamaki (2000) deter- affected at a higher rate than that of fathers (Emerson,
mined that children with disabilities are significantly 2003; Krauss, 1993; Pelchat et al., 2003; Taanlia, Jarvelin,
more likely to live in impoverished households; 28% & Kokkaun, 1999). Studies have also determined
of disabled children live in households with incomes that mothers are more affected emotionally by their
below the federal poverty level. Meanwhile, nonpoor children’s condition than fathers (Godress et al., 2005;
families spend an average of 7% of their income on Midence, 1994). Pelchat and colleagues found that the
child care (Smith, 2000), and families living below the fathers’ expectations are attuned to life outside the home
federal poverty level spend an average of 35% of their and the actual day-to-day tasks related to the child’s
total income on child care (Smith). This places enor- care are not their priority. However, having a disabled
mous stress on the budgets of low-income families child can be a source of stress for fathers. The primary
(Schulman, 2000). causes for this stress are financial difficulties, emo-
Studies have determined that the families of tional tension, and limitations in social activities
disabled children do not receive sufficient financial (Krauss; Pelchat et al.).

JSPN Vol. 12, No. 4, October, 2007 247


Difficulties Experienced by Families With Disabled Children

In this study, more than half (57.3%) of the mothers the individuals with a disabled child from a psycho-
experienced deep sadness because they have a disabled logical point of view.
child. This was also the case in the study conducted in The social lives of 76.7% of the mothers were
Turkey by Özsenol and colleagues (2003), who found affected, and this was primarily a result of their not
that the majority of mothers of disabled children being able to set aside time for themselves and other
experience intense sadness. Mothers and fathers of members of the family. Similar results were obtained
disabled children in China have been found to experi- by another study conducted in Turkey that found
ence irritation, sadness, stress, worry, anxiety, fear, mothers who were caring for disabled children did not
burnout, and loss of control (Ma, Lai, & Han Pun, 2002). have enough time to set aside for the other members
Because of the emotions that they experienced, 71.8% of the family (Mutlu et al., 2003). In addition, 6.8% of
of the mothers wanted emotional support. More than the mothers stated that they quit work to care for their
half of the mothers (56.8%) received this support child. These data may be explained by the fact that the
from another family member, but 52.7% stated that mothers were primarily responsible for the care of the
this support was not sufficient. For this reason, the disabled child and their lack of sufficient support for
support may need to be from a professional. Hassal, that care. In small-scale studies, mothers of disabled
Rose, and McDonald (2005) also found that there is a children have reported that a lack of affordable and
strong correlation between mother and father’s stress adequate child care limited their ability to maintain
and family support. employment (Brandon & Hofferth, 2003; Fink, 1988;
In this study, 20.4% of the mothers were blamed by Shearn & Todd, 2000).
the family for having a child with a disability. This may In the examination of the status of changes in internal
be a result of the cultural norm in Turkey for child family relationships, it was determined that 34.0%
care and raising to be primarily the mother’s responsi- of the families had changes and that 42.9% of the
bility, and when she has used medications, smoked changes in families of children with CP, intellectual
cigarettes, or has not had good nutrition during her disability, and autism results in arguments between
pregnancy, the presumed result is the disabled child. spouses. Also in this study, 5.7% of the families had
Additionally, mothers may be blamed for not being divorced after the birth of a disabled child. Because of
able to adequately care for their child after birth. the additional stress that a disabled child brings to
The mothers stated that they received support from family life and because of spouses blaming each other,
other members of the family for the emotions that they there may be changes in relationships within the
experienced, but more than half stated that this sup- family and in marital relationships. In a study con-
port was insufficient. The support that a family could ducted by Kulagina (2003), it was determined that
receive from a professional, however, could facilitate 77.5% of families experienced changes in relationships
the family’s adjustment to a disabled child and coping within the family, and 4.5% of the parents divorced
with the stress and difficulties the family experiences after the birth of a disabled child.
(Trulsson & Klingberg, 2003). For this reason, it is The family is the primary institution for the founda-
important that one of the supports that a family tion of a society and for maintaining its presence. The
receives be access to a professional. Nurses are the family is the primary environment for meeting basic
individuals who can give professional support to needs, such as nutrition, care, need for love, emotional
families and children because they come in contact development, education, acquiring cultural values,
with disabled children and their families in almost healthy intellectual development, etc., and holds a
every area (hospital, health clinic, school, rehabilitation very important place in the lives of individuals. In
center, etc.). These data present the need to consider particular, the family is important for being the place

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


where children learn some behavioral models for life, partners who have parental expertise and competence
some rules and roles for social interactions, basic habits (Balling & McCubbin, 2001; Fisher, 2001). Lindblad,
for daily relationships, and lay their foundations for Rasmussen, and Sandman (2005) found that parents
all of these skills. For this reason, every child, whether experience support and become invigorated when
normal or disabled, needs to grow up within a family professionals acknowledge them as experts on their
to be able to develop (Abidoglu & Gümüsçü, 2000; child. According to Callery (1997), an integration of
Gökcan, 2002). For these reasons, a healthy family parental and professional knowledge has potential
environment is extremely important for the child’s benefits in the management of children’s health prob-
development. lems. Also, Lindblad and colleagues determined that
In the present study, the majority of the families with sharing would not be possible if the parent and child
disabled children had two parents, and the divorce were not acknowledged as persons, because the trust
rate was very low. However, Parish and Cloud (2006) that is a prerequisite for sharing is an integral part of
reported that 51% of families with disabled children the acknowledgment. Strandberg, Norberg, and Jansson
are single-parent families. This difference may be a (2000) found that lack of sharing with professionals and
result of the difference between Western and Turkish experiences of not being seen as important as patient
societies. In Turkish society, the cultural approach is and carer were found to be viewed as very hard and
the protection of the unity of the family. At the same often result in a struggle to receive care. Friedemann
time, in examining Table 1, it can be seen that the (1989) emphasized that a genuine concern for each
number of working mothers was very low in the present family member is essential for family well-being.
study. These women are not economically independent In this study, more than half (54.3%) of the CP chil-
and may be tied to their husbands for the continuation dren’s families wanted help with home care. This can
of their economic and social lives. In general, divorced be explained by the CP children being more physically
women are perceived negatively in the culture, and dependent. The families of 38.5% of the autistic children
with the addition of economic dependence, this may wanted psychological support. This can explain the
be why the divorce rate is so low. finding that 58.8% of the mothers of autistic children
In the present study, the majority (81.5%) of fam- stated that they felt overwhelmed.
ilies of disabled children wanted support from nurses.
More than half of the families wanted information Conclusions
and counseling about their child’s condition from the
nurses. This may be explained by the families having The majority of families with disabled children
insufficient information about their child’s condition. experience difficulties, the mothers have almost all
In a study by Taanlia and Javalin (1998), the families of of the caretaker responsibilities, and mothers do not
disabled children primarily wanted information about receive adequate support.
their child’s diagnosis and treatment from doctors and Two in five of the mothers were blamed by family
nurses. Pain (1999) also determined that the parents of members for having a disabled child, and nearly half
disabled children’s source of information was profes- of the individuals doing the blaming were the families
sionals. Studies have determined that parents wanted of their husbands.
more information, more flexibility, and more choice, and More than half of the mothers experienced deep
that current levels of respite provision were insuffi- sadness and feelings of being overwhelmed, and two
cient (Beresford, 1994; McConkey & Adams 2000). thirds experienced anger. The mothers stated that they
Studies found that parents are also dissatisfied did not receive sufficient emotional support. Their social
because they do not feel that they are respected as lives, work lives, and family relationships were affected.

JSPN Vol. 12, No. 4, October, 2007 249


Difficulties Experienced by Families With Disabled Children

The majority of families wanted support from nurses. Author contact: sabire00@yahoo.com, with a copy to the
In general, the families wanted information and Editor: roxie.foster@uchsc.edu
counseling about the child’s condition from nurses
References
and wanted to receive support for home care and
psychological support for themselves. Abidoglu, Ü., & Gümüsçü, S. (2000). Autism and autistic children (1st
ed.). Istanbul, Turkey: Özgür Publication.
Aytaç, S. (2000). Increasing importance of rehabilitation of the disabled
child. Journal of Dokuz Eylül University Social Sciences, 2(2), 21–35.
How Do I Apply This Information to Balling, K., & McCubbin, M. (2001). Hospitalised children with
Nursing Practice? chronic illness: Parental caregiving needs and valuing parental
expertise. Journal of Pediatric Nursing, 16, 110–119.
Baykan, Z. (2003). Causes and prevention of disabilities, handicaps,
The findings obtained from this study have made and defects. Journal of Continuing Medical Education, 9(9), 336–
clear the importance of providing families with profes- 338.
sional support by evaluating the family of a disabled Beresford, B. A. (1994). Resources and strategies: How parents cope
with the care of a disabled child. Journal of Child Psychology and
child as a whole and coordinating their care as a result Psychiatry and Allied Disciplines, 35, 171–209.
of this evaluation. Ensuring the continuation of family- Black, M. (1981). Impact of disabled children on the family. IIPF.
centered care may be important in decreasing the prob- Medical Bulletin, 15(5), 1–2.
Blau, D., & Tekin, E. (2001). The determinants and consequences of child
lems that they experience. This study revealed that care subsidies for single mother (Discussion paper 383). Bonn,
mothers may be blamed by their husbands and their Germany: Institute for the Study of Labor.
husbands’ families for the birth of a disabled child. For Brandon, P. D., & Hofferth, S. L. (2003). Determinants of out-of-
school childcare arrangements among children in single-mother
this reason, accepting the mother and father together and two-parent families. Social Science Research, 32, 129–147.
with the birth of a disabled child and ensuring they Bright, J. A., & Hayward, P. (1997). Dealing with chronic stress: Coping
receive necessary counseling and support may be strategies self-esteem and service use in mothers of handicapped
children. Journal of Mental Health, 6(1), 67–75.
important in helping to solve this problem. Nurses have Brinchmann, B. S. (1999). When the home becomes a prison: Living
important roles in the fulfillment of all of these with a severely disabled child. Nursing Ethics, 6(2), 137–142.
responsibilities. As the nurse is very familiar with the Callery, P. (1997). Maternal knowledge and professional knowledge:
Co-operation and conflict in the care of sick children. International
healthcare system, he or she is in an excellent position Journal of Nursing Studies, 34, 27–34.
to assist the family in identifying resources and accessing Çavusoglu, H. (2002). Child health nursing (6th ed.). Ankara, Turkey:
these resources. In addition, nurses are an important sup- Bizim Company.
Çetinkaya, Z. (1997). Effect of planned education on the need for disabled
port system. Having a nurse organize and coordinate children related information of mothers with cerebral palsy. Unpublished
the disabled child and family’s care may facilitate the master’s thesis in nursing. Hacettepe University Health Sciences
resolution of problems that the family experiences. When Institute, Ankara, Turkey.
Christina, K., & Patrica, S. (1992). Stress in families of children with
nurses can carry out these functions, they will have an disability: A review of risk and resistance. Journal of Mental
important place in the protection of families and children. Health, 1(3), 32–46.
Cutler, A., & Gilkerson, L. (2002). Unmet needs project: A research,
coalition building, and policy initiative on the unmet needs of infants,
toddlers, and families. Chicago, IL: University of Illinois at Chicago,
Acknowledgment. Thanks are due to Nihat Sözmen Department of Disability on Human Development.
Disabled Child Care and Rehabilitation Center, Izem Ehrle, J., Adams, G., & Tout, K. (2001). Who’s caring for our youngest
children? Child care patterns of infants and toddlers (Occasional
Disabled Child Education and Rehabilitation Private Paper, 42). Washington, DC: Urban Institute.
Center, and Umudum Cognitive and Physically Dis- Emerson, E. (2003). Mothers of children and adolescents with intel-
abled Child Education Private Center that facilitated lectual disability: Social and economic situation, mental health
status, and the self-assessed social and psychological impact of
the work, and to all the parents with disabled children the child’s difficulties. Journal of Intellectual Disability Research,
who participated. 47(Pt 4–5), 385–399.

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


Fink, D. B. (1988). School age children with special needs: What do they do Ma, J. L. C., Lai, K., & Han Pun, S. (2002). Parenting distress and
when school is out? Boston: Exceptional Parent Press. parental investment of Hong Kong Chinese parents with a child
Fisher, H. (2001). The needs of parents with chronically sick children: having an emotional or behavioural problem: A qualitative
A literature review. Journal of Advanced Nursing, 36, 600–607. study. Child & Family Social Work, 7, 99–106.
Foster, K., O’Brien, L., & McAllister, M. (2004). Addressing the needs McConkey, R., & Adams, L. (2000). Matching short break services
of children of parents with a mental illness: Current approaches. for children with learning disabilities to family needs and prefer-
Contemporary Nurse, 18(1–2), 67– 80. ences. Child: Care, Health and Development, 26, 429.
Friedemann, M. L. (1989). The concept of family nursing. Journal of Meyers, M. K., Heintze, T., & Wolf, D. A. (2002). Child care sub-
Advanced Nursing, 14, 211–216. sidies and the employment of welfare recipients. Demography, 39,
Fujiura, G. T., & Yamaki, K. (2000). Trends in demography of child- 165–179.
hood poverty and disability. Exceptional Children, 66, 187–199. Midence, K. (1994). The effect of chronic illness on children and
Ganow, M. (2000). Child care subsidies: Strategies to provide outreach families: An overview. Genetic, Social, and General Psychology
to eligible families. Welfare Information Network Issue Notes, 4 (10). Monographs, 120(3), 11–16.
Retrieved June 26, 2007, from http://www.financeproject.org/ Mutlu, A., Demir, N., Kerem, M., & Livanelioglu, A. (2003). Exami-
Publications/childcaresubsidiesissuenote.htm nation of problems faced by families with a child with cerebral
Godress, J., Ozgul, S., Owen, C., & Foley-Evans, L. (2005). Grief palsy. Health and Public, 13(2), 56–59.
experiences of parents whose children suffer from mental illness. Ocakçı, A. (2002a). Examination of independent life skills of children
Australian and New Zealand Journal of Psychiatry, 39(1–2), 88–94. with cerebral palsy. Retrieved June 25, 2007, from http://
Gökcan, K. (2002). Expectations of families with disabled children. www.sosyalhizmetuzmani.org/cpyasam.htm
Retrieved June 25, 2007, from http://www.sosyalhizmetuzmani. Ocakçı, A. (2002b). Healthy development in a disabled child: A
org/ozurlucocukaileleri.htm nursing approach. Retrieved June 25, 2007, from http://www.
Green, S. E. (2003). “What do you mean ‘what’s wrong with her?’” bilmedya.com/hemsiremakale.htm
stigma and the lives of families of children with disabilities. Ong, L. C., Chandran, V., & Peng, R. (1999). Stress experienced by
Social Science & Medicine, 57(8), 1361–1374. mothers of Malaysian children with mental retardation. Journal of
Hall, S. (1996). An exploration of parental perception of the nature Paediatrics and Child Health, 35(4), 358–362.
and level of support needed to care for the child with special Özsenol, F., Isıkhan, V., Ünay, B., Aydın, I., Akın, R., & Gökçay, E.
needs. Journal of Advanced Nursing, 24, 512–521. (2003). Evaluation of family roles in families with a disabled
Harden, J. (2005). Parenting a young person with mental health child. Journal of Gülhane Medical, 45(2), 156–164.
problems: Temporal distruption and reconstruction. Sociology of Pain, H. (1999). Coping with a child with disabilities from the parents’
Health & Illness, 27(3), 351–371. perspective: The function of information. Child: Care, Health and
Hassal, R., Rose, J., & McDonald, J. (2005). Parenting stress in Development, 25, 299–313.
mothers of children with an intellectual disability: The effects of Parish, S. L., & Cloud, J. M. (2006). Child care for low-income
parental cognitions in relation to child characteristics and family school-age children: Disability and family structure effects in a
support. Journal of Intellectual Disability Research, 49(6), 405–418. national sample. Children and Youth Services Review, 28, 927–940.
Hogan, D. P., Msall, M. E., Rogers, M. L., & Avery, R. C. (1997). Pelchat, D., & Lefebvre, H. (2004). A holistic intervention pro-
Improved disability population estimates of functional limitation gramme for families with a child with a disability. Journal of
among American children aged 5–17. Maternal and Child Health Advanced Nursing, 48(2), 124–131.
Journal, 1(4), 203–216. Pelchat, D., Lefebvre, H., & Perreault, M. (2003). Differences and
Karancı, A. N. (1997). Living with differences (1st ed.). Ankara, similarities between mothers’ and fathers’ experiences of
Turkey: Turkish Psychologists Society Publications. parenting a child with a disability. Journal of Child Health Care,
Kayhan, F. (1995). Chronic illnesses and family dynamics. Journal of 7(4), 231–247.
Ege University Nursing School, 11(2), 99–107. Pott, L. N., & Mondiecs, B. L. (2002). Pediatric nursing caring for chil-
Kearney, P. M., & Grifin, T. (2001). Between joy and sorrow: Being a dren and their family (1st ed.). Clifton Park, NY: Thomson Delmar
parent of a child with developmental disability. Journal of Learning.
Advanced Nursing, 34(5), 582–599. Raina, P., O’Donnel, L. M., Rosenbaum, P., Brehaut, J., Walter, S. D.,
Krauss, M. W. (1993). Child-related and parenting stress: Similarities Russell, D., et al. (2005). The health and well-being of caregivers
and differences between mothers and fathers of children with of children with cerebral palsy. Pediatrics, 115(6), 626– 636.
disabilities. American Journal on Mental Retardation, 97(4), 393– Roberts, K., & Lawton, D., (2001). Acknowledging the extra care
404. parents give their disabled children. Child: Care, Health and
Kulagına, E. V. (2003). The social and economic situation of families Development, 27, 307.
with handicapped children. Russian Education and Society, 45(11), Schmitke, J., & Schlomann, P. (2002). Chronic conditions. In N. L.
42–61. Pott & B. H. Mondleco (Eds.), Pediatric nursing: Caring for
Lindblad, B. M., Rasmussen, B. H., & Sandman, P. O. (2005). Being children and their families (1st ed., pp. 493–515). Clifton Park,
invigorated in parenthood: Parent’s experiences of being NY: Delmar.
supported by professionals when having a disabled child. Journal Schulman, K. (2000). The high cost of child care puts quality care out of
of Pediatric Nursing, 20(4), 288–297. reach for many families. Washington, DC: Children’s Defense Fund.

JSPN Vol. 12, No. 4, October, 2007 251


Difficulties Experienced by Families With Disabled Children

Shapiro, J., & Tittle, K. (1990). Maternal adaptation to child disability Taanlia, A., Syrjala, L., Kokkoken, J., & Jarvelin, M. R. (2002). Coping
in Hispanic population. Family Relations, 39(2), 179–185. of parents with physically and/or intellectually disabled children.
Shearn, J., & Todd, S. (2000). Maternal employment and family Child: Care, Health and Development, 28(1), 73–86.
responsibilities. Journal of Applied Research in Intellectual Disabili- Tekinalp, B. (2001). The effects of a coping skills hopeless and stress
ties, 13, 109–131. levels of mothers of children with autism. Unpublished master’s
Shlay, A. B., Weinraub, M., Harmon, M., & Tran, H. (2004). Barriers thesis. ODTÜ Social Sciences Institute, Ankara, Turkey.
to subsidies: Why low-income families do not use child care Trulsson, U., & Klingberg, G. (2003). Living with a child with a
subsidies. Social Sciences Research, 33, 134 –157. severe orofacial handicap: Experiences from the perspectives of
Siklos, S., & Kerns, K. A. (2006). Assessing the diagnostic experiences parents. European Journal of Oral Sciences, 111(1), 19–25.
of a small sample of parents of children with autism spectrum Turkey Prime Minister Administration for Disabled People. (2002).
disorders. Research in Developmental Disabilities, 28(1), 9 – 22. Prevention and rehabilitation. Retrieved June 25, 2007, from
Smith, K. (2000). Who’s minding the kids? Child care arrangements. http://www.zicev.org.tr/bilgiler:ozurluhakları:ozurluyasası.htm
Fall 1995. Current population reports (pp. 70–90). Washington, DC: Urhan, G. (2002). Families of children with cerebral palsy. Retrieved
U.S. Census Bureau. June 25, 2007, from http://www.sosyalhizmetuzmani.org/
Strandberg, G., Norberg, A., & Jansson, L. (2000). An examplar of a cpaileleri.htm
positive perspective of being dependent on care. Scholarly Inquiry U.S. Census Bureau. (2001). Age: 2000. Washington, DC: Author.
for Nursing Practice, 14, 327– 353. Retrieved June 25, 2007, from http://www.census.gov/prod/
Taanlia, A., & Javalin, M. (1998). Parental guidance and counselling 2001pubs/c2kbr01-12.pdf
by doctors and nursing staff: Parents’ views of initial informa- Wittert, D. D. (2002). Parental reactions to having a child with
tion and advice for families with disabled children. Journal of disabilities. Nursing Spectrum, 8(17), 12–14.
Clinical Nursing, 7(6), 505– 510. Yurdakul, A., Gırlı, A., Özekes, M., & Sarısoy, M. (2002). Stress
Taanlia, A., Jarvelin, M. R., & Kokkaun, J. (1999). Cohesion and coping methods of families with autistic and mentally disabled
parents’ social relations in families with a child with disability children: Mother-father differences. Saray Rehabilitation, 4(7), 6–17.
or chronic illness. International Journal of Rehabilitation Research, Zigler, E. F., & Lang, M. E. (1991). Child care choices: Balancing the
22(10), 101–109. needs of children, families and society. New York: The Free Press.

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