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Tali Heiman
The Open University of Israel
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SEE PROFILE
Journal of Developmental and Physical Disabilities, Vol. 14, No. 2, June 2002 (
C 2002)
159
1056-263X/02/0600-0159/0
C 2002 Plenum Publishing Corporation
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160 Heiman
social burden than did those of children with physical handicaps (Tangri
and Verma, 1992), especially when the children with disabilities grow up
(Rimmerman and Duvdevani, 1996).
Parents expressed their personal concern about their childs ability to
function in a less restrictive environment or in less sheltered settings, and
were concerned about the childs future (Waggoner and Wilgosh, 1990).
Families with children with special needs face both the normal pressures
and tensions of family life and, in addition, adjustment to the presence of
the child with a disability. Such families usually require assistance in order
to reorganize their lives toward positive adaptation (Werth and Oseroff,
1987).
How does the resilience of parents emerge in a family with a child with
a disability? The present research examined this question by interviewing
parents in such families, specifically about their reactions to the birth of
their child, their present concerns and support resources, and their future
expectations.
METHOD
Participants
162 Heiman
with learning disabilities. All of the children, 23 boys (71.9%) and 9 girls
(28.1%), ranging in age from 7 to 16 years (M = 10.92, SD = 6.25) were
studying in special education schools.
Instrument
The interview was designed by the researcher to tap into the parents
experience with a child with a disability living at home. The questions were set
to identify the facilitators and barriers to implementing the familys routine
life and to identify the composition of the parents resilience. Once the initial
survey was developed, it was field tested by a panel of experts in the area
of inclusion, among whom were a special education teacher, a university
lecturer, a social worker, and a psychologist. The survey instrument was
refined using feedback from them before being distributed. The Parents
Perception Interview consisted of three topics related to the past, the present,
and the future. The past questions (1, 2, and 3) asked the parents about their
suspicion of their childs disability; parents reactions to the diagnosis of a
disability and their reactions of other family members to the diagnosis. The
next four presents questions (4, 5, 6, and 7) that were included to provide a
specific indicator of benefits and problems rearing the child; the effect the
child has on the parents life; services mostly used by parents; and current
feelings involved in raising a child with a disability. The last topic (Questions
8 and 9) used in this study were about the future concerns and expectations
and parents activity for the welfare of their child in the future.
Procedure
Exact agreement on all the units belonging in each category was found to be
between 85 and 98%. The reliability score for the categories for the entire
sample was 96%.
RESULTS
164 Heiman
The present
4. Concerns or problems in rearing your child. After coding, the parents
answerswere classified into four main categories: (a)parent-oriented;
(b) parentsdisabled child oriented; (c) parentsnondisabled child
oriented; and (d) parents with no special problems or concerns.
Most of the parents expressed concerns in more than one of these
categories.
(a) Parent-oriented. Most of the parents spoke about the various dif-
ficulties they themselves have to cope with. Most parents (n =
26, 81.25%) mentioned never-ending emotional and/or physical
fatigue, social isolation, and the feeling of a lack of freedom, I
can never leave him alone or I have to take her with me every-
where. More than three-quarters (n = 25, 78.12%) mentioned
their financial problems. The special expenses entailed usually
constitute a heavy burden for the entire family. These include
private teachers, specific learning courses, various consultations,
private doctors, and different therapies. Another issue that both-
ers many parents (n = 15, 46.8%) is their feeling that they lack
accurate information regarding educational settings, and social
and psychological help: We have to seek out the exact place or
organization that can advise us, or We have to fight for things
like reductions in payments, special dentists, therapy, special in-
struments, computer, and vocal tapes that our child is supposed
to receive.
(b) Parentsdisabled child oriented. Parents expressed medical
concerns and extra stress when the child with a disability is ill or
has to pass a medical examination (n = 28, 87.5%). The parents
were concerned about the social adjustment of their child, and
felt that he or she is socially isolated or rejected (He has no
friends), and that there were not enough after-school recre-
ational opportunities or services for children with developmental
disabilities (n = 13, 40.62%).
(c) Parentsnondisabled child oriented. Almost half of the parents
(n = 14, 43.75%) were worried about the impact of the disability
on the special-needs childs siblings and the heavy burden that
may fall on them when they have to take care of or take respon-
sibility for their brother or sister with a disability. Parents were
also worried about the social lives of these siblings, of the amount
of their interactions with peers, and their social and behavior ad-
justment (n = 12, 37.5%).
(d) Parents who claimed they have no special problems (n =
8, 25%).
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5. The childs influence on the parents life. The majority of the par-
ents (62%) believe that they are the ones most affected by their
childs disability, whereas others (44%), thought that the familys
other children were the most affected. Although many felt that it
affected the nuclear family (40%), and the extended family (20%),
some parents reported their lives were not affected by the disabil-
ity (26.9%). Figure 1 shows the effect of the disability on family life:
most of the parents (61.5%) reported that the disability of their child
strengthened parental relations (Communication between us is bet-
ter now than before). Some of the parents (23.1%) claimed that the
childs disability created new problems, conflicts, and impatience be-
tween the parents, and the dyadic relationship was weakened. The
presence of a disabled child affects the parents social life and their
relationships with friends (26.9%). For example, the parents or other
family members rarely spend time with friends, friends ask the par-
ents not to bring their child to social events, parents did not par-
ticipate together in out-of-the-home activities or social events, and
siblings tend to avoid bringing friends home. Some parents claimed
they have completely lost contact with friends, relatives, or even with
their extended family (30.8%).
6. Services used by parents. During the interviews the parents were
asked about the main services they referred to for assistance. Most
of the parents (93.5%) noted they used psychological services ei-
ther for the relevant child, themselves, or siblings. These services are
referred to for psychological testing or for guidance and emotional
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DISCUSSION
family members, grandparents, and other relatives. Almost all of the parents
(93.5%) used a combination of different types of supports and benefits from
psychological services and psychiatric consultation, support groups, social
workers, educational advisors, or support provided by voluntary organiza-
tions or special education system. Seeking for support, can enlightened on
how informed resilience is expressed, that is, by doing something actual or
practical about the situation. Singly and together, these may help to construct
their resiliency.
Parents expressed the need for a strong belief in the child and in the
childs future, in maintaining an optimistic outlook along with a realistic
view and acceptance of the situation. They evinced their resilience from the
holistic perspective the importance of looking holistically at the child as
part of the family, not as a separate entity, was noted by some parents. Fur-
thermore, parents emphasized the idea of accepting the child, who has the
right to live like our other children, analyzing the situation in an objective
way, and trying to obtain practical and efficient solutions. We can assume, in
terms of Blachers theory (Blacher, 1984), that parents who participated in
the current study were all at that stage when they have already accepted the
full meaning and implications of the childs disability and had adapted them-
selves to it. Having achieved this realistic approach to such disability, they
were able to function well, or at least adequately, within the family system.
On the basis of characteristics of family resilience, viewed as the ability
to bounce back or to return to a previous way of functioning (Hawley and
DeHaan, 1996, p. 284), three main factors that enable parents to function
in a resilient way were identified in this study: (a) an open discussion and
consultation with family, friends, and professionals; (b) a positive bond be-
tween the parents, that supports, and strengthens them; and (c) a continuous
and intensive educational, therapeutic, and psychological support for family
members. Another characteristic that was found to clarify the sense of re-
silience in these families was comprised of positive parental feelings toward
their child, toward coping, and toward family relationships. The majority
of the parents expressed such feelings as joy, love, acceptance, satisfaction,
optimism, and strength, although 28% expressed such negative feelings as
anger, frustration, or guilt about rearing a child with a disability.
The study presented here enhances our knowledge and understanding
of howdespite the difficulties in rearing a child with a disability, with the
financial, emotional, and social problems it entails, and the concerns about
family conflicts and sibling adjustmentfamilies respond with strength and
fortitude (i.e., with resilience). The findings of this study demonstrate that it
would be advantageous to enhance coping strategies that may contribute to
parents competencies, particularly in relation to the future welfare of their
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170 Heiman
The past
1. Parents suspicion of their childs disability: When and why did you
first suspect that something was wrong with your child?
2. Parents reactions to the diagnosis of a disability: How did you re-
spond or react when you heard the diagnosis?
3. Reactions of other family members to the diagnosis: With whom
did you talk after receiving the diagnosis? How did they react?
The present
4. Concerns or problems rearing the child: What are your daily con-
cerns in rearing your child?
5. The effect the child has on the parents life: How does your childs
disability affect your family life?
6. Services used by parents: What services do you mostly use, and for
what?
7. Present feelings: Can you describe your feelings about your daily
involvement in raising a child with a disability?
The future
8. Future concerns and expectations: Please describe your main expec-
tations or the difficulties that you anticipate regarding your childs
future?
9. Parents activity for the welfare of their child in the future: What
are you doing to ensure your childs welfare in the future?
ACKNOWLEDGMENT
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