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Parents of Children with


Disabilities: Resilience,
Coping, and Future
Expectations

Article in Journal of Developmental and Physical Disabilities May 2002


Impact Factor: 1.56 DOI: 10.1023/A:1015219514621

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Tali Heiman
The Open University of Israel
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Journal of Developmental and Physical Disabilities, Vol. 14, No. 2, June 2002 (
C 2002)

Parents of Children With Disabilities: Resilience,


Coping, and Future Expectations1
Tali Heiman2,3

On the basis of characteristics of family resilience, the study examined the


perspectives of parents of children with an intellectual, physical, or learning
disability. Thirty-two parents were interviewed as to past, present, and the
modes of coping. The questions examined various aspects of family ecology
domains: parents responses to the childs diagnosis; patterns of adjustment;
family support and services used by parents; and parents feelings and future
expectations. Although, it was found that most parents had to make changes
in their social life and expressed high levels of frustration and dissatisfaction,
many try to maintain their routine life. The majority expressed the need for
a strong belief in the child and in the childs future, an optimistic outlook,
and a realistic view and acceptance of the disability. The study highlighted
the importance of social resources and support, and the need for effective
programs of intervention.
KEY WORDS: parents; disability; coping; expectations; resilience.

Definitions of the concept of resilience usually include the ability to


withstand and rebound from crisis and distress. A systemic view of resilience
within ecological and developmental contexts seeks to identify elements that
enable families to cope more effectively and emerge hardier from crises
or persistent stresses (Hawley and DeHaan, 1996; Walsh, 1996). A similar
1 This paper is based on a presentation at the 11th World Congress of the International Associa-
tion for the Scientific Study of Intellectual Disabilities (IASSID), Seattle, Washington, August
2000.
2 Department of Education and Psychology, The Open University of Israel, Ramat Aviv,
Tel Aviv, Israel.
3 To whom correspondence should be addressed at Department of Education and Psychology,
The Open University of Israel, 16 Klausner Street, Ramat Aviv, 61392 Tel Aviv, Israel; e-mail:
talihe@oumail.openu.ac.il.

159

1056-263X/02/0600-0159/0
C 2002 Plenum Publishing Corporation
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160 Heiman

concept of hardiness grew out of another line of research on stress and


coping. Although there are no exact terms or variables that define resilience,
several different researches have examined diverse terms associated with
it, such as a sense of mastery, optimism, and reliance on God (Littrell and
Beck, 1999), resilience as successful adjustment in terms of self-esteem, social
support, various aspects of social life, problem-solving, and coping strategies
(Dumont and Provost, 1999), notions of social integration, interdependence,
and close relationships (Lyons et al., 1998). Another study on resilience
revealed three constitutional factors that include measures of self-efficacy,
well-defined faith lives, and the ability to reframe barriers and obstacles
(Bachay and Cingel, 1999).
A childs disability is a triadic experience, involving three-way inter-
actions among the child who experiences the dysfunction, the family that
is affected by it, and the external environment where the disability is mani-
fested (Falik, 1995). The crisis engendered by the first intimation or diagnosis
that something is wrong with their child is probably the parents most dif-
ficult and shocking experience. In most cases, parents initial reactions are
likely to be negative, and similar to those related to bereavement (Blacher,
1984; Marvin and Pianta, 1996). Families either adapt flexibly and mobilize
into effective action or freeze in various degrees of rigid, ineffective reac-
tions, whereas others tend to resist or even deny the diagnosis itself (Falik,
1995). The findings of Bower and Hayes study suggest that families without
a child with a disability, families with a child with an intellectual disability,
and families with a child with a physical disability are characterized more by
similarities than by differences (Bower and Hayes, 1998).
Changes of life routines are necessary in order to provide for the childs
care, which have been found to have significant effects on family function-
ing (Marvin and Pianta, 1996; Turnbull and Turnbull, 1990; Waggoner and
Wilgosh, 1990). The difficulties encountered by parents coping with a child
with a disability and their familial relationships have been cited as a source
of anxiety, overprotection, rigidity (Lardieri et al., 2000), as well as an expla-
nation for lower levels of coherence, less emphasis on the personal growth of
other family members, and a greater emphasis on control within the family
(Margalit and Heiman, 1986). Parents of children with disabilities experi-
ence greater stress and a larger number of caregiving challenges, such as
more health problems, greater feelings of restriction, and higher levels of
parental depression than parents of nondisabled children (Quine and Paul,
1985; Roach et al., 1999; Valentine et al., 1998). Some families experience
difficulties in financial assistance or claimed on inadequate and insufficient
support, others had the impression of a lack of coordination between dif-
ferent social departments, agencies, and authorized workers (Freedman and
Boyer, 2000). Mothers of children with mental handicaps reported a higher
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Parents: Coping, Expectations, Resilience 161

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

Thirty-two parents of children with special needs participated in the


study. Participants were parents of children who lived at home, with their
families, in a large metropolitan district in central Israel. The families were
selected from three special education schools, each of which was oriented
toward dealing with one special type of disability: intellectual, physical,
or learning. Demographic data for the parents were obtained from school
counselors. The families were matched by age, education, and socioeco-
nomic levels: parents ages ranged from 31 to 57 (M = 41.74, SD = 7.64);
parents education ranged from graduated from high school (n = 3, 18.8%)
to graduated from college (n = 13, 40.6%), with the remainder not reporting
(n = 16, 50%); socioeconomic levels ranged from middle to upper-middle
class.
The criteria for selection of families were (a) only one child with a
specific disability, (b) other siblings living at home are between 0 and 18 years
of age and with no known disabilities or disorders, and (c) the parents speak
and understand the countrys language (Hebrew). The families were then
divided into three groups: 16 families (50%) with children with intellectual
disabilities, including moderate to severe mental retardation, autism, Downs
syndrome; nine families (28%) with children with physical disabilities or
handicaps such as cerebral palsy; and seven families (22%) with children
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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

Parents were contacted by telephone to set up an interview in their


home. Prior to the participants responding, they were briefed on the pur-
pose of the study. The interviews, each of which took 3040 min, were au-
diotaped. Qualitative data analysis procedures were used to examine the
participants perceptions, and the constant comparative method of analysis
was applied as a method of coding and categorizing the data (Lincoln and
Guba, 1985). In order to classify the categories of each item, the answers were
examined separately by three evaluators: all graduates with a second degree
in special education and psychology and familiar with the study. For each
question the evaluators listed the categories they identified. The categories
were then compared and reviewed to identify consistencies and to reconcile
discrepancies. The categories were re-analyzed on the basis of this revision.
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Parents: Coping, Expectations, Resilience 163

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

Qualitative and quantitative data analyses were conducted. The data


results are reported according to each of the nine questions posed in the
interviews.
The past
1. Parents suspicion. Half of the parents (16 parents, 50%) suspected
their child had a disability due to a birth condition such as birth
ataxia, premature birth, abnormal blood test, Downs syndrome, or
sensory system developmental delay. Ten parents (31.3%) noticed
a delay in the childs motor development (She wasnt holding her
head up yet, He wasnt yet walking), or observed unexpected
motor movements. Five parents (15.6%) observed a development
regression, a communication disorder or a delay in communicating.
Most of the parents (n = 22, 68.8%) observed that something
was wrong with their child from 1 month after birth to 4 years;
a smaller number (n = 5, 15.6%) noticed this between the childs
birth to 1 month, whereas a few (n = 4, 12.5%) observed regression
only after the age of 4. For example, the mother of a 5-year-old boy
with mild mental retardation told us Gil is our fist child. I didnt
suspect anything. His birth weight was excellent. During his first
three months he didnt succeed in raising his head. Then, we ob-
served other motor problems. Unfortunately, no one told us that
he was injured at birth until he was three years old, and no one dis-
cussed Gils diagnosis with us. There were no significant correlations
or significant results of Chi-square analyses between the time and
the cause of the parents suspicion (r = .02, ns, 2 = 4.79, df = 4,
p = .310, ns).
2. Parents responses. Four main categories regarding parentsresponses
to childs diagnosis were provided. The most frequent category found
was a negative emotional response (n = 27, 84.4%), which included
feelings of depression, anger, shock, denial, fear, self-blame, guilt,
sorrow, grief, confusion, despair, hostility, emotional breakdown.
Daniela, a 36-year-old mother of a 4-year-old girl with Downs syn-
drome explained I felt as if the whole world had fallen on me. I
didnt understand how this could be happening to me, and I thought,
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164 Heiman

how will I return home? The second most common category


(n = 10, 31.3%) was a negative physiological response. Parents
described reactions such as crying, not eating, cold sweat, trembling,
fear, physical pain (headache, stomach ache), and breakdown. The
mother of a 15-year-old boy with autism said I cried a lot, a lot of
terrible thoughts came into my mind. I was covered with cold sweat,
and my heart beat very fast. I was afraid Id have a heart attack.
A third category (n = 4, 12.5%) was coded as a positive emotional
reaction. In the words of the parents of a child with cerebral palsy,
We were prepared for a diagnosis like this. We werent surprised.
We expected it. We just wanted to hear from the doctors what we
could do, what treatment we should provide him with. A few par-
ents (n = 3, 9.4%) had a nonspecific response or did not remember
what they had felt or done.
3. The reactions of other family members to the diagnosis. Most of
the parents (n = 24, 75%) talked to members of their family, in-
cluding grandparents, sisters, brother-in-law, or their other children.
Some parents (n = 6, 18.75%) told only their spouse and a few (n =
2, 6.25%) talked only to a friend. According to the parents answers
about the reactions of others, three categories were found. Most
of the people (n = 17, 53.12%) reacted in a positive way, encour-
aging the parents, (e.g., Dont worry, Itll be all right), and ex-
pressing a lot of understanding, support, and love. Another group
(n = 9, 28.12%) had a negative reaction. They were shocked, or
expressed deep sorrow or grief. One neighbor said, Me? Id kill
myself. A few of the responses were practical and offered help
to the parents (n = 6, 18.75%). Using Chi-square analysis, no sig-
nificant correlations or differences were found between the three
groups with whom the parents talked (family, spouse, friend) and
the three types of disability (intellectual, physical, learning) (r =
.09, ns, 2 = 8.69, df = 4, p = .069, ns). Furthermore, no signifi-
cant correlation were obtained between the three types of interlocu-
tors and the three types of responses (r = .38, ns), nor were any
significant differences found between the three types of responses
and the three types of disability ( 2 = 7.68, df = 4, p = .104, ns).
No unique profile was found for the persons with whom parents
consulted and a type of response, or regarding the specific disability.
This suggests that parents shared their feelings or thoughts about
their childs disability with the people to whom they felt most
close, had the greatest confidence in, or from whom they expected
understanding, rather than according to the severity of the childs
disability.
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Parents: Coping, Expectations, Resilience 165

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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166 Heiman

Fig. 1. The disability effect on the family life.

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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Parents: Coping, Expectations, Resilience 167

support. Other services are also referred to educational (80.6%);


medical, including doctors (71%); paramedical services, including
physiotherapy, speech, music, or art therapy (51.6%); municipal
services, especially for refunds and reductions for various expen-
ditures (12.9%). Few parents (6.5%) needed help and support from
organizations that provide assistance for handicaps, most were inter-
ested in acquiring special equipment, instruments or computers, or
in summer camps suitable for their child.
7. Parents feelings. Most of the parents (75%) conclude that their initial
negative reactions and feelings have turned into positive and opti-
mistic feelings of love, joy, and acceptance, as well as the satisfaction
and strength that accompany success in rearing their special child.
However, 28% of the parents admitted that they still feel anger,
sorrow, frustration, guilt, and pain especially when comparing their
special child with others.
The future
8. Parents concerns and expectations. Parents concerns and expecta-
tions were mixed. As Fig. 2 shows, many parents (55%) were con-
cerned about their childs inclusion in society, including her or his
financial and physical independence; others (50%) were concerned
about the childs education, finishing school, ability to acquire a pro-
fession, and have economic independence; some parents (30%) pon-
dered the question of how, in the future, their then grown-up child
would manage without them, where he or she would live, and what
kind of financial and emotional support he or she would receive.
Parents of younger children with a disability (15%) were concerned
with how they would deal with their childrens adolescence and pu-
berty, whereas those with such children already at adolescence (15%)
were concerned with their childrens future difficulties in building

Fig. 2. Parents future concerns.


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168 Heiman

a family, and the possibility that their child would be unable to


do so.
9. Parents activity for their childs future welfare. Finally, the parents
were asked what they were doing at present to ensure their childs
welfare in the future. Although their responses to the previous ques-
tions indicated concern about their childrens future welfare and se-
curity, most of the parents (70%) were not, at present, taking any
practical steps to do so. The others 30% looked for hostels informa-
tion, examined vocational facilities, or wrote to different organiza-
tions for advice.

DISCUSSION

The study focused on the parents of children with an intellectual, phys-


ical, or learning disability who are living at home. It examined parent re-
sponses to the diagnosis, their patterns of adjustment, and their future con-
cerns and expectations. In this way it sought to examine the qualities of
resilience that enable parents to function and to maintain their morale and
optimism during crises and to be able to cope in a productive way with regard
to both the present and the future of their child.
Most of the parents in this study tended to react in an emotionally and
physiologically negative way to the diagnosis of their childs disability. These
results contribute to theories (e.g., Blacher, 1984; Marvin and Pianta, 1996;
Seligman and Darling, 1989) about parents reactions when faced with a
child with a disability.
We found that the transition in a family with a special-needs child
brought about significant changes in that familys social life. Many parents
had to make changes in their social life of frustration and dissatisfaction.
Some experienced considerable stress, as well as feelings of depression,
anger, shocks denial, self-blame, guilt, or confusion. It would, nevertheless,
be incorrect to view such families as pathological because of their disabled
child; it is of greater benefit to examine the strong and positive relationships
that develop between the parents and that challenge and strengthen them. A
larger sample would undoubtedly provide a clearer picture of the parents
experiences and feelings, and significant differences between the families
might then emerge.
The findings of this study provide a greater understanding of the ef-
fect of various types of support that answer the needs of families caring
for individuals with developmental disabilities. Parents try to maintain their
routine life, sometimes drawing on or even initiating support from nuclear
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Parents: Coping, Expectations, Resilience 169

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

children. Furthermore, it highlights the importance of social resources and


the need for effective programs of intervention. In future studies, relation-
ships between parents, siblings, and the special child with a disability, would
be better understood within a longitudinal design, in which the emotional,
social, and behavioral adjustment of each member of the family is examined.

APPENDIX: THE PARENTS PERCEPTION INTERVIEW

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

I thank Ruth Ruzga for her editorial contribution.

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