504828

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QHRXXX10.1177/1049732313504828Qualitative Health ResearchKimura and Yamazaki

Article
Qualitative Health Research

The Lived Experience of Mothers of

23(10) 1307­–1319
© The Author(s) 2013
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DOI: 10.1177/1049732313504828

Disabilities qhr.sagepub.com

Miyako Kimura1 and Yoshihiko Yamazaki2

Abstract
In this study, we explored the lived experience of Japanese mothers who have delivered multiple children with
intellectual disabilities (ID), using interpretative phenomenological analysis. We identified three superordinate themes
and seven subordinate themes from the narrative data collected from 10 participants. The superordinate themes were:
abandoned hope for having an ordinary family, accumulating physical and mental fatigue, and searching for positive
experiences in parenting multiple children with disabilities. How they perceived the birth of children with disabilities
for the second time differed depending on the disability types; specifically, whether they detected the disabilities
early or not. Encountering the disability in another child overwhelmed mothers, especially when the disabilities were
diagnosed after several years with or without suspicion; they struggled to accept the fact. Despite mothers facing
extreme difficulties in parenting multiple children with disabilities, they tried to alter the negative perceptions and find
an optimistic way of living.

Keywords
children, disability; interpretative phenomenological analysis (IPA); lived experience; mothers, mothering; research,
qualitative

In Japan, there were 117,300 children under the age of
18 and 289,600 adults over 18 with intellectual disabili-
ties (ID) living with their families in 2005: an increase
from 93,600 children and 221,200 adults in 2000
(Ministry of Health, Labor, and Welfare, 2001, 2007).
According to the American Association on Intellectual
and Developmental Disabilities (n.d.), “Intellectual dis-
ability is a disability characterized by significant limita-
tions both in intellectual functioning (reasoning, learning,
problem solving) and in adaptive behavior, which covers
a range of everyday social and practical skills. This dis-
ability originates before the age of 18” (para. 1)
A plethora of research which shows the negative
impacts on families of children with ID has been reported
(Neece & Baker, 2008). For example, parents of children
with ID have higher levels of stress and morbidity of
depression and/or anxiety than parents of children with-
out disabilities (Baker et al., 2003; Emerson, 2003;
Gallagher, Phillips, Oliver, & Carroll, 2008), and the
stress is related to the child’s temperament and problem
behavior, caregiver burden, parents’ sleeping conditions,
and poor social support (Boström, Broberg, & Bodin,
2011; Dunn, Burbine, Bowers, & Tantleff-Dunn, 2001;
Gallagher et al.; Hassall, Rose, & McDonald, 2005;
Norizan & Shamsuddin, 2010; White & Hastings, 2004).
Different aspects including children’s disabilities and
social conditions are intertwined to affect the life of par-
ents of children with disabilities.
The difficulties of parenting are different depending
on the type of disabilities, which contributes to children’s
emotional and behavioral states. In particular, parents of
children with autism/pervasive developmental disorder
(PDD)—invisible disabilities—undergo a long and diffi-
cult period of time before they receive the initial diagno-
sis, and require a lengthy time to accept the impairment
(Nakata, 2002). Comparatively, parents of children with
autism/PDD who exhibit problem behaviors experience
higher levels of stress than parents of children with Down
syndrome (Dabrowska & Pisula, 2010). In addition,
because of persisting traditional gender roles, mothers
experience higher levels of stress and poorer health con-
ditions than fathers (Boström et al., 2011; Gray, 2003).
1
The University of Tokyo, Bunkyo-ku, Tokyo, Japan
2
Nihon Fukushi University, Chita-gun, Aichi, Japan
Corresponding Author:
Miyako Kimura, Department of Epidemiology and Preventive Health
Sciences, Graduate School of Medicine, The University of Tokyo, 7-3-
1 Hongo, Bunkyo-ku, Tokyo 113-0033, Japan.
Email: kimurami-tky@umin.ac.jp
1308 Qualitative Health Research 23(10)
These mothers of children with ID are less likely to be
employed, and are more likely to experience social isola-
tion and stress and develop depression (Shearn & Todd,
2000; Singer, 2006). Therefore, mothers of children with
ID seem to be significantly affected by their parenting.
Recently, researchers have increasingly focused on
parents’ stress-coping resources, such as positive percep-
tions, hope, optimism, self-esteem, self-efficacy, and a
sense of coherence (Baker, Blacher, & Olsson, 2005;
Hassall et al., 2005; Hastings, Allen, McDermott, & Still,
2002; Hastings & Brown, 2002; Hyman & Oliver, 2001;
Olsson & Hwang, 2002; Padencheri & Russell, 2002;
Trute, Hiebert-Murphy, & Levine, 2007). Researchers
have found that parents of children with ID who have
more stress-coping resources are more likely to avoid
stress, maintain better health, and show lower risks of
depression than those with few stress-coping resources
facing similar difficulties (Hassall et al.; Hastings &
Brown; Hedov, Anneren, & Wikblad, 2002; King et al.,
2006; Mak, Ho, & Law, 2007; Oelofsen & Richardson,
2006; Olsson & Hwang; Trute et al.).
There has been little research in Japan on the relation-
ship between parents of children with ID and their stress
coping; instead, there is some evidence to suggest that the
environment surrounding people with ID in Japan is
harsher than that in other developed countries. In a survey
comparing the opinions of people with disabilities in
Japan, Germany, and the United States, researchers asked
people with ID whether their country had seen an
improvement in six areas over the previous decade,
including accessibility to welfare services and under-
standing of people with disabilities (Cabinet Office,
2006). The result showed that Japan had seen the lowest
rate of improvement. The percentages of respondents rec-
ognizing improvement in the six areas were as follows:
United States, 61.8%; Germany, 51.6%; Japan, 14.8%
(Cabinet Office).
In Japan, most individuals with disabilities are taken
care of by their family in the family home. In a recent
article, it was reported that approximately 90% of indi-
viduals with disabilities were dependent on their parents,
and more than half of the caregivers were over 60 years
of age (Kyosaren, 2011). In addition, traditional Japanese
social norms place significant cultural burdens on moth-
ers. For example, data collected from a general survey
showed that the ratio of women who continued working
after their first birth was 25.3%, whereas the ratio of
women who retired after their first birth was 41.3%
(Ministry of Health, Labor, and Welfare, 2010b). The
percentage of women who had children with disabilities
was not considered in this survey, although how respon-
sibilities of parenting were weighted more on mothers
was indicated. Despite such social norms, mothers
of children with disabilities have very limited social
support, and sufficient attention has not been paid to the
health of these mothers.
The concept of women’s health was included in a
recent Japanese policy (Ministry of Health, Labor, and
Welfare, 2010a), yet the policy does not include any
approaches to the health promotion of mothers who have
children with disabilities. Moreover, the policy is focused
on individuals’ life stages, and lacks a perspective on
family health promotion. Youda (1999) claimed that chil-
dren with disabilities were considered an “unacceptable
presence” in Japanese society, and that mothers of chil-
dren with disabilities tended to be blamed and accused by
family members and relatives, especially by the parents
and siblings of their husbands.
In this context, there is a notable concern for mothers
of multiple children with ID as one of the most vulnerable
populations in Japanese society. What do mothers of mul-
tiple children with ID experience? How does raising mul-
tiple children with ID impact mothers? Several
quantitative studies revealed negative impacts on parents
of multiple children with disabilities in both mental and
social aspects, compared with those with a single child
with a disability (Lawton, 1998; Orsmond, Lin, & Seltzer,
2007). Few researchers used qualitative research methods
based on parental narratives to specifically explore what
sort of experience those parents had.
Wakiguchi, Arikawa, Hayashi, and Abe (2000) inves-
tigated the experience of a mother who had two children
consecutively with infantile early epileptic encephalopa-
thy, but they focused on a single case, examining only her
experience during a short period of time immediately
after the birth of the second child. Additionally, although
Kimura, Yamazaki, Mochizuki, and Omiya (2009)
showed that the birth of a sibling with PDD following a
child with the same disability led to a mother’s recogni-
tion of impairment, little is known about other cases of
siblings with different disabilities. Such research topics
seem to be extremely sensitive, but proper understanding
of a mother’s experience of repeatedly having to handle
children with disabilities is necessary for providing an
appropriate environment for them. Thus, we designed our
study to explore the lived experience of mothers of mul-
tiple children with ID in Japan.
Methods
Design
We used interpretative phenomenological analysis (IPA;
Smith, Flowers, & Larkin, 2009) as the method of analy-
sis. The aims of IPA are to grasp and seek the meanings of
participants’ experiences by hearing the voices of partici-
pants from across the sociocultural spectrum. It is
adaptable when exploring uninvestigated areas in which
Kimura and Yamazaki 1309
theoretical pretexts are absent (Reid, Flowers, & Larkin,
2005). In other words, IPA helps to understand “what the
experience for this person is like, what sense this particu-
lar person is making of what is happening to them” (Smith
et al, 2009, p. 3). It includes a case-by-case analysis that
examines in detail the perceptions of a specific group, and
has especially been used to explore difficult reproductive
decisions that individuals have to face, as well as the ethi-
cal issues faced by society (Chapman & Smith, 2002).
In this study, we were concerned about not only com-
mon experiences among mothers of multiple children
with ID, but also how the children’s disability type and
the situation surrounding each participant reflect their
perception. Researchers using IPA have been interested
in the nature of gaps that exist between a situation/state
and an individual’s perception (Chapman & Smith,
2002). Moreover, whereas analyses of IPA highlight dif-
ferences, attempts are made to balance this against an
account of commonalities (Reid et al., 2005). These
aspects also suited to our purpose; thus, we regarded IPA
as the most adaptable approach for this study.
Participants
The potential participants for this study were Japanese
mothers living within the greater Tokyo metropolitan area
who had given birth to multiple children with ID within
the previous 18 years. We obtained data from 10 partici-
pants within a homogeneous sample whose children’s dis-
abilities were diverse. IPA has a focus on analysis of
language used by a small and homogenous sample (up to
10 participants according to Smith et al., 2009), and it is
for us to challenge the traditional linear relationship
between the number of participants and the value of the
research (Reid et al., 2005). If the participants had more
than two children with ID, the number of children with/
without disabilities and their birth order were not restricted.
Ages of the 10 participants ranged between 35 and 50
years, with a mean of 41.7 years, and all participants were
married. Eight participants were full-time homemakers,
whereas two worked part time. Ages of the older children
with ID ranged between 3 and 18 years, with a mean of
11.5 years; six were boys and four were girls. Disability
types included autism/PDD (six children), Down syn-
drome (three), and other chromosome anomaly (one).
Their 10 younger siblings with ID, eight boys and two
girls, were aged between 0 and 13 years, with a mean of
7.4 years. Their disability types were autism/PDD (three),
Down syndrome (two), craniostenosis/ID (one), develop-
mental delay (one), attention-deficit/hyperactivity disor-
der (two), and intellectual disability with autistic tendency
(one). There were two other undiagnosed children who
were born after a younger child with ID, and had some
developmental delay and problem behavior.
Procedure
The proposal for this study was approved by the
Department of Medicine’s Institutional Review Board at
the University of Tokyo. We used purposeful sampling to
recruit participants through a parents’ group and a day
service center, where they provided educational services
for a number of school-age children with intellectual/
developmental disabilities. The parents’ group had a
membership of parents of children with a wide array of
ID, and we asked the leaders of the group and staff mem-
bers of the day service center to introduce the overview of
our study and discuss the interview process with mothers
who met the criteria. Following the discussion, our con-
tact details were provided to the mothers. Participation
was voluntary; those who expressed an interest in partici-
pating contacted Kimura, the first author, to learn more
about the study, and if they were still interested in taking
part, a time and place for the interview was arranged.
Prior to and on the day of the interview, privacy assur-
ances were given to the participants, both through verbal
explanations and in written documentation. Before the
interviews began, participants signed a consent form that
included permission to record interviews. In addition to
the first group of mothers, we recruited more participants
through word of mouth in the community. When someone
who met the criteria expressed an interest in participation,
they contacted Kimura and followed the same procedure.
Data were collected in one-on-one semistructured
interviews conducted by Kimura between November
2007 and April 2010. Interviews lasted between 80 and
165 minutes, with a mean of 140 minutes. The interview
questions included the following: For the second time,
how did you notice the disability of your child? How did
you feel about that fact? Please tell me about your experi-
ences taking care of multiple children with intellectual
disabilities. During the interview we also obtained demo-
graphic information, such as ages and types of disability
of the children, whether there was a sibling without a dis-
ability, the standard of living, employment status, and
marital status.
Analysis
Throughout the interviews, Kimura followed IPA guide-
lines (Smith et al., 2009) and took careful note of partici-
pants’ emphasized points, repeated words and
expressions, pauses, laughter, verbal tones, and degree
of fluency. IPA guidelines were also followed with
respect to how to create and analyze verbatim transcripts
from interview recordings. Searching for metaphors in
such a study is particularly important because they are
useful for understanding participants’ shared experi-
ences (Shinebourne & Smith, 2010). In this study, meta-
phors were selected from participants’ actual words,
1310 Qualitative Health Research 23(10)
which seemed to be most adaptable to imply their experi-
ences, situations, emotions, and perceptions. In addition,
we used the metaphors to cluster subordinate themes,
which categorized specific experiences of the partici-
pants. These processes were also helpful to grasp super-
ordinate themes, which indicated more consistent
experiences among the participants.
Similar to the procedure used in a previous study
(Kimura, Yamazaki, Mochizuki, & Omiya, 2010),
Kimura took responsibility for the following: (a) reading
the transcripts multiple times, making initial comments
on the text, searching for metaphors and their meanings,
and transforming these into themes that captured the
essential qualities of the text; (b) analyzing the relation-
ships among the themes until they formed a consistent
whole and creating a rank-ordered list of themes that
allowed us to identify the superordinate and subordinate
themes for each participant; (c) identifying shared super-
ordinate themes for the group as a whole, confirming by
checking relevance to subordinate themes, metaphors
and their implications, original comments, and actual
language used in the interviews; and (d) adding descrip-
tive commentary.
Yamazaki, the second author, confirmed the adequacy
of coding, themes, metaphors, and interpretations at each
stage, and provided alternatives to those suggested by
Kimura. Also, to avoid a prejudiced viewpoint and reflect
multiple perspectives, we presented our work to a group
of researchers who were familiar with health sociology,
disabilities, nursing, and qualitative research. Their feed-
back was taking into consideration in finalizing the
themes, commentary, and analyses.
Findings
Three superordinate themes emerged from descriptions
by Japanese mothers who gave birth to multiple children
with ID (see Table 1). The first was “abandoned hope for
having an ordinary family,” which described how partici-
pants faced the fact that they had become the mother of
multiple children with ID, and what this meant to them.
The second was “accumulating physical and mental
fatigue,” which referred to the difficulties of parenting
multiple children with ID, the undesirable circumstances
in which they lived, and how these were intertwined and
affected the participants. The third was “searching for
positive experiences in parenting multiple children with
disabilities,” which explained the ways participants
altered their perceptions based on their own experiences,
their relationships with others, and their children with ID.
After each citation, the children’s information (the birth
order and the type of disability) is described. In the text
below, disability types are noted using the following
abbreviations: attention-deficit/hyperactivity disorder
(AD/HD), chromosome anomaly (CA), Down syndrome
(DS), and pervasive developmental disorder (PDD).
Children without disability are noted with “WD.”
Abandoned Hope for Having an Ordinary
Family
When they first realized their children had ID, the major-
ity of the participants felt that their dreams and life plans
were completely destroyed. What had been giving the
participants hope was the birth of the next child. Six par-
ticipants whose first child had ID decided to have their
second child specifically to raise a healthy child and to
reconstruct what they thought of as an “ordinary” family.
The three participants who had older children without a
disability before having children with ID had wished for
someone who would support their healthy children, with
a hope of having an ordinary sibling relationship. In one
case, after the second child was born, the first child was
diagnosed with PDD. Although the participant in this
case became depressed at the time, she still hoped to
experience ordinary parenting with her second child.
Thus, facing disability for the second time meant losing
hope. The shock the participants were suffering from was
from two sources: the disability itself and the negative
impact on their own status in society.
Losing a healthy child again.  One of the devastating things
among the participants was facing disability for the sec-
ond time. This was overwhelming for most of them,
because they once again lost the chance to have a healthy
child and failed to reconstruct an “ordinary” family. The
disability of the next child manifested itself at various
points, depending on the disabilities. In one case, a
woman who had experienced abnormal labor faced the
possibility of the next child’s disability immediately fol-
lowing its birth. The doctor was an advocate of natural
childbirth, and did not give the participant the option of
delivery by cesarean section. The baby was born with the
umbilical cord wound around her neck:
The doctor explained that he wasn’t sure what the baby’s
development was going to be like, and that’s all. I just cried,
cried, and cried. I don’t know how many times I have wished
I could reset my life. I definitely wanted to have healthy
baby, like an ordinary family, but I’ve lost it again. (1st: CA;
2nd: craniostenosis)
The use of the phrase “lost it again” implies that the
woman thought she had lost a healthy baby that was
needed for the reconstruction of an ordinary family. Most
participants used the metaphor “healthy baby/child,”
which implied “hope for having an ordinary family/
opportunities to experience ideal mothering.” There were
also mothers of multiple children with Down syndrome,
which they detected immediately after birth:
Kimura and Yamazaki 1311

Table 1.  Themes, Main Metaphors, Their Implications, and Similar/Related Expressions.

Subordinate Implications of Similar/Related Expressions of the

Superordinate Themes
Abandoned hope for
having an ordinary
family
 
 
Accumulating physical
and mental fatigue
 
Searching for the
positive experiences
in parenting multiple
children with
disabilities
 
 
Themes Metaphors Metaphors Metaphors
Losing a healthy Healthy baby/ Hope for having an Ordinary family/parenting/sibling
child again child ordinary family/ relationship
opportunities to
experience ideal
mothering
Being surprised by [Someone Perceive oneself as [Others’] shock/surprise; I had become an
others saying], something special object to be surprised at
“Again?
Both? Too?”
Taboo Family who have There must be a reason; avoid talking
multiple children about [participant’s] family; unbelievable;
with ID untouchable (e.g., “Russian roulette” is the
metaphor for having one child with ID)
Facing difficulty Endless; run Parenting work/role No rest/break; no time; one after the
in parenting into the other; children show various problems
multiple children ground (naughty, self-harming behavior,
with disabilities aggressive behavior, hyperactivity,
panicking, mischief, do not get along);
could not sleep
Lack of adequate Rule-bound Lack of adequate/ Unavailable (e.g., nursery, service, support);
support system flexible social difficult to leave/no place to leave [my
support system children]; I have to do this on my own;
why only me?; unfair; difficult situation
leads to more difficult situations
Drawing on Run on the Confidence to Got experience from the first; it works
difficult same track overcome difficult out; feel the meaning of life; I made up
experiences situations based my mind
on previous
experiences
Recognizing those By my side Sense of safety and [Someone] helped me; everyone was
who share the security worried about me; [I could] cope with/
burden overcome difficulties; [someone] shared
my burdens/experiences
Feeling grateful Treasures Current recognition [Children with ID] give me comfort/healing;
for children for having multiple healed/helped [me]; [children with ID
with disabilities children with ID are] grateful/cute/a pleasure/unique; I feel
possessing thankful/happy
unique
characteristics

Note. ID = intellectual disabilities.

My third one was obviously different [from a healthy baby].
It was even more obvious than my second one, and I
thought, “Again?” I didn’t say that aloud, but it was clear to
me. I was feeling like at the bottom of everything. (1st: WD;
2nd & 3rd: DS)
In our study, there were two mothers of multiple chil-
dren with Down syndrome, and neither of them had an
amniotic fluid test before delivery because they did not
expect to have a child with Down syndrome. Both par-
ticipants were feeling an extreme level of shock, but one
felt completely devastated, whereas the other was not so
overwhelmed. These mothers’ acceptance was different,
although because the disability was visible and it was
“obvious” that they had to work hard to cope with it, both
of them quickly began the task of caring for their multiple
children. In contrast, when subsequent children were
born with “invisible” disabilities such as autism/PDD,
participants struggled to detect the disabilities at an early
stage, which made them even more difficult to accept:
Participant (P): I wasn’t aware of his disability until he
entered elementary school.
Interviewer (I):  Did you have any suspicion?
P: Not at all. I was like, “What is pervasive developmental
disorder?” I had had an amniotic fluid test, thinking that
it might have Down syndrome too [like her first child],
but the result came out clean, and the delivery was
1312 Qualitative Health Research 23(10)
normal, so I didn’t even imagine he might have a dis-
ability. (1st: DS; 2nd: PDD; 3rd: undiagnosed)
Only one mother in our study had a first child with
Down syndrome and a second child with PDD. In this
case, obtaining negative results from an amniotic fluid
test underpinned the participant’s positive expectation for
her next child, and being mainly concerned about Down
syndrome had resulted in a late detection of the disability.
However, even for mothers who already had children
with autism/PDD, it was not easy to detect the same type
of disabilities in their next child:
Because the second child was totally different from the first,
I had confidence that the second one didn’t have any
disability. I was very happy to raise a healthy child [pause]
and I thought that I was experiencing ordinary parenting. So
when the teacher of my first child pointed out the disability
of my second child, I ignored her advice. I thought it
shouldn’t be. After a while, we received a diagnosis for the
second one, and at that time I was completely overwhelmed
by the fact and couldn’t cope with it for several years. This
shocked me more than before. (1st: AUT; 2nd: autistic
tendency)
For mothers who had been raising their children
under the assumption that they did not have disabili-
ties, diagnosis of a disability was not easy to deal with
and took considerable time to accept. During this pro-
cess, they were experiencing differences between the
siblings as well as the feeling of loss of “ordinary
parenting.”
There was an exception. A participant had experi-
enced devastating sorrow at the death of her first child
with cerebral palsy, and when she faced the disability of
her third child (PDD), she felt that, “Okay, here it comes
again.” In this case, “again” did not imply the devastation
of her hope, but rather it referred to the challenging sec-
ond opportunity of raising a child with ID. Thus, moth-
ers’ reactions and the magnitude of those reactions varied
depending on their background and their previous life
experiences.
Being surprised by others. Not only the mothers’ own
shock of repeated encounters with disabilities, but also
other’s reactions had a negative impact on mothers of
multiple children with disabilities. Often others reacted
with surprise when they found that more than one child in
a family had disabilities. This also overwhelmed the
mothers because being surprised by others made them
realize that they had acquired a special status in society,
which also implied that their hope of becoming an ordi-
nary family was to be abandoned. The participants had
common experiences in which others were surprised and
tossed short but unpleasant questioning words such as,
“Again?” “Both?” and “Too?”:
P: It is hard when I imagine how people may say, “What?
Both kids [have disabilities]?” If I had one child with a
disability, I can have an excuse by saying, “It’s like
Russian roulette, and I got bad luck.” But when you have
two, they would say, “There must be a reason,” and
that’s awkward. In fact, I used to see mothers who had
multiple children with disabilities with a prejudiced atti-
tude. I have to resist that now [that] I am on the other
side, but that was hard to get over.
I:  Did somebody say such a thing?
P: No, no. Other mothers with healthy children avoid talk-
ing about my family as a taboo. But I can see their reac-
tion. It was extremely disturbing to see the look of shock
on people’s faces; the magnitude of my shock would
have been three times greater than theirs. (1st: WD; 2nd:
AUT; 3rd: AD/HD)
Notice how the differences in perception about having
one child with ID and multiple children with ID were
described by this participant. In particular, she used two
metaphors, “Russian roulette” and “taboo.” The former
referred to having one child with ID, and other partici-
pants used similar expressions such as “bad luck,” “acci-
dent,” “chance,” and “rare possibility.” The latter
metaphor referred to having multiple children with ID,
and it had an opposite meaning to the former, such as
“there must be a reason,” “avoid talking about [partici-
pant’s] family,” and “unbelievable.” Therefore, the par-
ticipants cognitively understood others’ surprise, but in
reality, it was difficult to accept that they had become
something special, as an “untouchable” in society.
Accumulating Physical and Mental Fatigue
Taking care of multiple children with disabilities involves
a considerable amount of work and effort, which could
contribute to mothers’ experience of extreme physical
and mental fatigue. Mothers had to meet a range of differ-
ent needs for the children with various types of disabili-
ties and characteristics. Undesirable circumstances such
as lack of adequate support also heightened the burdens
on the participants, and led to perceptions of unfairness.
These circumstances were intertwined and added to the
fatigue they felt.
Facing difficulty in parenting multiple children with disabili-
ties.  Parenting multiple children with ID constantly bur-
dened the mothers both physically and mentally. The
everyday work of parenting was endless, and children’s
behaviors altered constantly. The words most repeated by
the participants were “no rest/break,” “no time,” and “one
after the other”:
P:  I haven’t taken the two kids out by myself before.
I:  
What? Never? Your children are both in elementary
school, right?
Kimura and Yamazaki 1313
P: Yes, but when they both get hyperactive, and they run off
in different directions, I can’t chase them around. I can’t
shop either.
I:  I see. It must be hard. And how about at home, do they
always need attention?
P: Of course, I can’t rest at all, because a mother’s work is
endless. Both kids alternately show aggressive behav-
iors, which causes many problems, one after the other.
[pause] I have run into the ground. (1st & 2nd: PDD)
This is a typical example of mothers of multiple chil-
dren with ID who had behavior problems. Most partici-
pants reported that their children had behavior problems,
and these resulted in perceptions that their parenting work
seemed to be “endless,” and that they were being “run
into the ground.” They also had to worry about others
around them, including neighbors and siblings without
disabilities:
My oldest son is really naughty, and often clogs the toilet. I
always go around and apologize to my neighbors. The
middle kid acts violently and the youngest refuses to go to
school. I somehow manage to take her to school, but it’s
almost lunch time when we arrive, and then soon afterward
I have to go to pick her up. They push me around all day
long. No matter how old they get, there is no time for myself
at all. (1st: DS; 2nd: PDD; 3rd: undiagnosed)
The third cries loudly, and the second gets panics. They
don’t get along. The first talks loudly to his brothers, and the
second panics again. His self-harming behavior became
worse, and he started taking medication. The first is slack
and it is terrible. (1st: WD; 2nd: AUT; 3rd: AD/HD)
These cases show how children affect each other, and
how difficult it can be to manage them when they “don’t
get along.” Especially when the children with ID were
young or if they had a sleep disorder, mothers did not get
enough sleep. The participant who had multiple children
with Down syndrome reported that she was only able to
sleep for 3 hours at a time since her second child was
born. Although there was a change in rhythm in conjunc-
tion with the children’s growth, participants had lived
without breaks, regardless of whether they had infants or
children of high-school age.
Lack of an adequate support system. Most participants
claimed that they had no adequate support system, and
such circumstances added to the difficulty of parenting
and the fatigue of mothers, which sometimes provoked
their feelings of unfairness toward society. Generally,
participants’ husbands did not have time to care for chil-
dren during weekdays, and grandparents were often too
old to take care of hyperactive children. Therefore, the
mothers required flexible social support, especially in
emergencies such as hospitalization, and during hospital
visits, family illnesses, and school events. The challenge
was that, even when there were various services and sys-
tems available, these tended to be “rule-bound” and were
not easily accessible:
P: My third child had intestinal stenosis and had to have
surgery immediately. I was in the hospital with her for a
few days. It was most difficult to leave my second child
[with Down syndrome] during that period.
I: Was it difficult for you to stay in the hospital with other
children?
P: Oh no, it was impossible. The hospital was rule-bound,
which prohibited any children to visit or stay in the
room, even if he or she was a sibling and had a disability.
(1st: WD; 2nd & 3rd: DS)
The phases “difficult to leave” and “no place to
leave [my children]” were repeated by all the partici-
pants. This made them think, “I have to do this on my
own.” No matter how hard participants tried to do
everything by themselves, there were limitations. One
participant observed, “When someone in the family
gets sick, I can’t take the kids to school. So they don’t
go to school.” This showed that lack of support in
emergencies resulted in negative impacts not only for
mothers but also for children. In addition, mothers of
children with ID were often required to attend educa-
tion/care centers with their children, despite this being
another burden:
Mothers of healthy children are able to work and are
eligible to use nurseries. But I can’t work because of
caring for my kids. That’s why I can’t use nurseries and
have to do everything by myself. I find it very difficult to
take two children with Down syndrome to an education/
care center by bus. To do so every single day is such a
struggle, and I do not have an alternative. One difficult
situation leads to another. It is so unfair, isn’t it? (1st &
2nd: DS)
In Japan, nursery and after-school services are pro-
vided, in principle, only for mothers who are employed.
This provoked feelings of unfairness in mothers who had
multiple children with ID: most wanted to work, but there
were significant obstacles. These circumstances increased
the physical and mental fatigue of the mothers.
Searching for the Positive Experiences in
Parenting Multiple Children With Disabilities
The majority of mothers expressed their willingness to
accept their life of caring for their children with ID.
Although there were enormous difficulties in parenting,
most said things like, “I had to survive for my children.”
To achieve this, participants needed to alter their percep-
tions about life by searching for the positive aspects of
1314 Qualitative Health Research 23(10)
parenting. These came from three sources: themselves,
others, and their children with ID.
Drawing on difficult experiences.  One positive experience
was that the participants felt some confidence to over-
come difficult situations based on their previous experi-
ences. When they first began raising a child with
disabilities, not only did they lack information about the
disabilities but also about the support and education that
was available. They worked hard to find information,
until finally they were able to reach out and connect with
others, confronting each challenge. That experience was
beneficial when they learned of their next child’s disabili-
ties, and one mother described this as being able to “run
on the same track”:
It’s an advantage that the younger child could run on the
same track that the older child has laid. The teachers of the
special support school who worked with the first child know
me well, even though there were times when we differed. So
if the second child doesn’t have a disability, then it’s a good
thing, but even if the second has a disability, it works out
because you have experience from the first [laughs]. (1st:
AUT; 2nd: autistic tendency)
This description also indicates that tackling difficult
experiences had led some to develop the confidence and
optimism to say that “it works out”:
P: There was no other way to live other than as a mother of
children with disabilities. I made up my mind about
every aspect.
I: How about now?
P: Now I know what I want to do and what I should do. I
think I’m happier now than before. Life is harder, and
my health is a lot worse than before, but yet, I think I am
happier. I like where I am positioned, and I have a mean-
ing in life. I feel like I rely on myself for my life, prob-
ably more than for a life in which I only had a child
without disability. (1st: WD; 2nd: AUT; 3rd: AD/HD)
The phrase “made up my mind” is an indication the that
participants’ sense of purpose had become clear based on
repeated experiences. Also, they had begun to believe
that life had meaning, as their interests shifted from
becoming a mother of children without disabilities to
building a society in which children with disabilities
could live well. Half of the participants told similar
stories.
Recognizing those who share the burden.  In addition to
confidence to handle difficult situations by themselves,
the participants were able to reach someone who tried
to understand and share their burden. The realization
that someone was available to share their burden put
the participants in a positive frame of mind. The
majority of mothers felt better when they had found
someone whom they considered to be “by my side,”
and it provided them with a sense of safety and secu-
rity to have “[someone who] helped me.” These feel-
ings also related to phrases such as “[I could] cope
with” and “overcome difficulties.” Those closest to the
participants were often their husbands and parents. In
our study, 6 participants were able to receive support
from their parents, their husbands, and/or their hus-
bands’ parents, and they realized that they also had
been cared for:
When I was in trouble, my parents helped me immensely.
There have been times when I felt like I might not be able to
cope with the fact of two kids with Down syndrome, but
when I looked at my parents, I felt like it was not that bad.
(1st & 2nd: DS)
My husband protected me from his mother and brother, who
accused me of having multiple children with aggressive
behavior. But one day, my husband said to them, “Both kids
have disabilities, even you don’t want to accept the fact.
Because my wife and I have to raise our children together,
don’t interrupt us.” Wow, that’s what I wanted to hear
[laughs]. Then I thought that I could raise these children and
cope with difficult parenting because he is by my side. (1st:
AUT; 2nd: autistic tendency)
Such feelings were not common to all participants.
Some became isolated even within their families or felt
helpless because the situation was not understood by
other members of their family. These women had to rely
on others. For example, being able to share difficulties
with the leader of a nonprofit organization was an impor-
tant support for one participant, who otherwise faced rais-
ing three children with very little support:
P: Even when the child broke the milk bottle and got all
bloody, my husband didn’t do anything. He has never
gone to school events. Although he said, “Let’s work
together to raise our kids,” I am the only one who does
everything.
I: How about your parents?
P: Not at all. My mother always scolded me because she
thought that having multiple children with disabilities
was my fault. But instead of my husband and my mother,
the staff of the NPO [nonprofit organization] for dis-
abled have always helped me. The leader of the NPO is
a mother of a child with a disability, and is always will-
ing to hear my complaints. Without her, I wouldn’t have
been able to raise my children. (1st: DS; 2nd: PDD;
3rd: undiagnosed)
Similarly, meeting someone who would understand
the circumstances of mothers of multiple children with
ID eased the participants’ fears of being somehow special
or marginalized. One participant stated,
Kimura and Yamazaki 1315
The parents’ association for children with disabilities has
helped me learn a great deal, and I have come to think that
it can work out. Usually, if you tell someone that both
your children have disabilities, the person gets shocked.
But in the parents’ association, no one is shocked no
matter how many of your kids have disabilities. It’s like,
“Her kids too, so are hers. So what?” (1st: WD; 2nd:
AUT; 3rd: AD/HD)
This mother had no family support, and was afraid of fac-
ing discrimination. Nevertheless, she finally found a
place where she could feel safe and secure. Even though
the circumstances were not exactly the same, all partici-
pants had someone who filled the role of sharing the
burden.
Feeling grateful for children with disabilities possessing unique
characteristics. Although having multiple children with
ID had deprived participants of hope and made them
exhausted, every participant found the value of each child
and recognized their own affection for the unique charac-
teristics in their children:
Everyone says, “It must be hard on you to have two
children with disabilities,” but I think it is good that I have
two because I don’t have to face just one. It is a lot of
work, but there are differences in their disabilities. In my
case, my older child has a severe disability, while my
younger has intermediate, and the younger one often gives
me some comfort or healing. (1st: AUT; 2nd: autistic
tendency)
Surprisingly, no one in our study referred to similari-
ties in their children with ID. Instead, the participants
mainly described the differences between the children,
and they stated that when they faced particular difficulties
with one child, the other child “healed” or “helped” them.
In the interviews, participants reported finding positive
features in their children and recognizing them as “trea-
sures.” This metaphor was expressed with feelings such
as “grateful,” “cute,” “pleasure,” and “unique,” and par-
ticipants looked back at their own lives and felt “thank-
ful” and “happy”:
P: It’s quite a lot that I get from my two kids. They are cute.
Well, any child must be cute for his or her parents, but
there are parts that are difficult and that are dear and lov-
able because of the disability. Smiles, gestures, silliness
. . . everything is cute [laughs].
I: You mean, it is good that you have two children?
P:  Yes, I have no regrets that I had them. Kids are trea-
sures. There are hard times. There are times when I
feel like hitting them [laughs], but children without
disabilities also have various difficult things, so dis-
ability has nothing to do with that. (1st: CA; 2nd:
craniostenosis)
As this example illustrates, the majority of the partici-
pants were trying to find a positive and optimistic way to
live their life, although the mother quoted had described
the previous year as being “rock bottom” because of the
children’s problem behaviors and her own health issues.
Moreover, all participants spoke about how optimistic
feelings could be drained away when they faced chronic
fatigue and unceasing worries of raising multiple children
with ID. Thus, these mothers were often desperate to find
an optimistic perspective in life while experiencing
extreme conditions. In other words, without finding posi-
tive experiences in parenting, everyday life might have
been extremely difficult.
Discussion
We explored the lived experience of Japanese mothers
who had multiple children with ID. The majority of the
participants had placed their hopes of the reconstruction of
their lives and families on their unborn children, and hav-
ing to face disabilities in these children had been a signifi-
cant shock to them. In addition, they experienced extreme
physical and mental fatigue from the everyday work of
dealing with the disabilities. Nonetheless, by realizing that
there were family members and others who would share
their burden, the majority of participants collected them-
selves and continued their positive efforts in trying to find
the positive aspects of the challenges they faced.
How the mothers perceived the birth of a second or
subsequent child with ID differed depending on the dis-
ability type of that child, and more specifically, whether
or not the disability could be detected early. In another
study, in which pregnancy after a woman had had a child
with Down syndrome was considered, it was noted that
the women perceived a subsequent pregnancy as a
chance to regain their self-worth, experience ordinary
parenting, and provide a sibling for the child with Down
syndrome (Tsuji, 2003). In the article about our previous
research (Kimura et al., 2010, Findings, “The potential
joy,” para. 1) we reported that pregnancy following the
birth of a child with PDD was “a fervent hope for an
opportunity to improve their current situation, alter their
lives, and reclaim lost dreams.” These findings were
echoed in this study, in that the child following a child
with ID was perceived to offer a promise of a recon-
structed life and family, and acknowledging his or her
disability meant seeing that dream shatter.
In the cases in which two children had Down syn-
drome, the participants had noticed the disability of the
next child even before a physician told them because
physical characteristics were visible, and there was no
alternative for them but to accept the reality that was pre-
sented to them. By contrast, with regard to next children
diagnosed with the so-called invisible disabilities, such as
1316 Qualitative Health Research 23(10)
autism/PDD (Nakata, 2002), the participants raised the
next children for some years on the assumption that they
had no disability, which later brought them much intense
conflict and ambivalence between understanding and
accepting the disabilities. Nakata stated that invisible dis-
abilities were considered more difficult to accept, and the
same conclusion was found in our study for the cases in
which mothers encountered a child with disabilities for
the second time. Therefore, medical care providers should
consider psychological support for parents being notified
of a disability for the second time.
The effect on mothers’ health from the lack of rest and
the need for lessening the physical and mental fatigue
associated with parenting should be highlighted. The par-
ticipants did not have time to sleep, and it was not easy to
take more than one child out of the house by themselves
because of their hyperactivity and problem behaviors.
They often felt extremely ashamed, and lived a life of
constant dread within their neighborhood. Because par-
ents’ poor sleep conditions, caregiver burden, and chil-
dren’s problem behaviors have a negative impact on
parental mental health (Gallagher et al., 2008; Neece &
Baker, 2008), the current situation—in which the mother
spends the majority of her time with multiple children
with ID—needs to be changed by providing respite care
that is more readily available and accessible.
Lack of adequate support has left mothers of children
with ID largely to do everything by themselves, despite
their body and mind being exhausted. Considering not
only the mothers’ health but also the children’s health, it
is clear that more flexible social support systems, such as
nursery and after-school services, helpers, and places to
leave children in emergencies, are much in need. Also,
support from husbands is important to ensure that moth-
ers’ burdens are shared, though caring for children during
the work week is not an easy task in Japanese society.
Therefore, it is necessary to introduce flexible working
hours for men and to increase social awareness about
their right to take leave for looking after their children.
More comprehensive approaches to facilitate these, such
as shifting the target of health promotion from unit of
generation to unit of family and involving mothers of
children with disabilities in strategies to promote wom-
en’s health, should be helpful.
What was most notable in this study were the fre-
quently observed positive aspects in the mothers’ narra-
tives, although they had been notified of disability
multiple times and were at times overwhelmed by car-
ing for their children with ID. For mothers who were
faced with the unbearable reality of disability in their
next children, support from family and others were per-
ceived as sharing the burden, and had a significant influ-
ence in altering their outlook to a positive one. According
to Hastings et al. (2002), positive perceptions in
mothers of children with ID were positively associated
with reframing coping strategies (positively reframing
events to make them more manageable), the helpfulness
and usefulness of support from family and friends, and
caregiving demands. We found in this study as well that
having someone who would share the burden was essen-
tial for increasing mothers’ sense of safety and security,
and underpinned the confidence to manage difficult
situations.
Also highlighted by a number of participants was that
they drew on past experiences that had been difficult and
challenging for them. When they faced disability for the
first time, they had no information about the disability
itself nor the surrounding environment and issues such as
support, educational system, or parents’ networks, and it
took them a great deal of time and effort to collect the
information. In contrast, when they faced disability for
the second time, they found it to be an advantage that they
had previously faced a challenging experience, as exem-
plified in the remark, “run on the same track.” This
reflects an attitude of living in a way that draws on diffi-
cult experiences, including both stress-related growth and
positive change (Siegel, Schrimshaw, & Pretter, 2005)
that emerged as they faced disability multiple times.
Another aspect, seeking a purpose in life as a mother
of multiple children with ID, could offer a renewed mean-
ing of life with broader perspectives. After having multi-
ple children with ID, the interests of mothers shifted from
being focused on becoming mothers of children without
disability to building a society where children with dis-
abilities are able to live well, indicating a strengthened
resolve to live a life as a mother of children with ID. In
several studies, it has been observed that a sense of pur-
pose is developed in the process of parenting children
with disabilities, leading to positive changes (Stainton &
Besser, 1998). In this study too, it appeared that the par-
ticipants had achieved a positive change by thinking
about their roles and purpose and affirming themselves as
mothers of multiple children with ID.
Additional new findings from the present study
included the observation that mothers found comfort and
pleasure in the unique characteristics, attitudes, and roles
of children with ID, and the differences between their
children even when they had the same type of disability.
Researchers have reported that a parent who raises mul-
tiple children with disabilities experiences greater nega-
tive impacts than those who have a single child with a
disability (Lawton, 1998; Orsmond et al., 2007). Similar
to this, our study participants suffered severe distress and
fatigue, and they felt that they could easily fall into an
abyss. Nonetheless, most recognized the worth of their
children and their own life, and had the strength to live
optimistically. Optimism provided buffering effects relat-
ing to children’s problem behaviors and increased
Kimura and Yamazaki 1317
mothers’ well-being (Baker et al., 2005). It seemed to be
one of the strong stress-coping resources to overcome
difficulties among the mothers.
The ability to describe complex feelings and atti-
tudes was an advantage of the IPA methodology we
applied in this study. Considering the types of disabili-
ties and situations surrounding each participant
allowed us to understand their differences. Seeking
metaphors was also an effective way to grasp common
experiences among the participants. By using IPA
methodology, significantly new detailed insights were
revealed regarding mothers’ experiences of giving a
birth to another child with ID, as well as their chal-
lenges of raising those children.
This study had several limitations. Because we
relied on a parents’ group and a day service center for
children with disabilities, the sample was necessarily
limited to those participants who availed themselves of
these networks. This leaves important questions about
the experiences of mothers without such support net-
works unanswered. Also, all participants lived in Tokyo
and most lived with their nuclear family. Hence, in our
research, the experiences of participants living in more
rural regions, many of whom typically share dwellings
with their husband’s families, were not included.
Furthermore, because in this study we focused only on
mothers, the experiences of fathers were not explored.
Finally, ethical considerations limited our study to
those mothers with an active interest in discussing these
issues.
Future issues to be addressed include examining the
experiences of fathers and siblings without disabilities
who live with multiple children with ID, and the type of
support needed by families. There has been little
research to date illuminating these issues, and we
believe that in this study, valuable descriptions to help
our understanding of women who have multiple chil-
dren with ID have been revealed. Further investigations
into the mechanisms of coping resources of parents of
multiple children with disabilities, and the expansion of
research on disability acceptance that addresses the
lives of parents holistically, are required to further our
understanding.
Acknowledgments
We thank all participants and members of the Department of
Health Sociology, and Department of Epidemiology and
Preventive Health Sciences, Graduate School of Medicine, at
the University of Tokyo.
Authors’ Note
Portions of this article were presented at the 77th Annual
Research Conference of The Japanese Society of Health and
Human Ecology in Tokyo, Japan, November, 2012.
Declaration of Conflicting Interests
The authors declared no potential conflicts of interest with
respect to the research, authorship, and/or publication of this
article.
Funding
The authors disclosed receipt of the following financial support
for the research, authorship, and/or publication of this article: A
grant was received from Grants-in-Aid for Scientific Research
(Basic Research A, 21243033).
References
American Association on Intellectual and Developmental
Disabilities. (n.d.). Definition of intellectual disability.
Retrieved from http://aaidd.org/intellectual-disability/defi-
nition#.UhMrr3uCjcs
Baker, B. L., Blacher, J., & Olsson, M. B. (2005). Preschool
children with and without developmental delay: Behaviour
problems, parents’ optimism and well-being. Journal of
Intellectual Disability Research, 49, 575-590. doi:10.1111/
j.1365-2788.2005.00691.x
Baker, B. L., McIntyre, L. L., Blacher, J., Crnic, K.,
Edelbrock, C., & Low, C. (2003). Pre-school chil-
dren with and without developmental delay: Behavior
problems and parenting stress over time. Journal of
Intellectual Disability Research [Special issue], 47, 217-
230. doi:10.1046/j.1365-2788.2003.00484.x
Boström, P. K., Broberg, M., & Bodin, L. (2011). Child’s
positive and negative impacts on parents: A person-
oriented approach to understanding temperament in pre-
school children with intellectual disabilities. Research in
Developmental Disabilities, 32, 1860-1871. doi:10.1016/j.
ridd.2011.03.017
Cabinet Office. (2006). Heisei 18 nendo shogaisha no shakai
sanka sokushin tou ni kansuru kokusai hikaku chosa
[International comparative survey on promotion of social
participation of individuals with disabilities, 2006].
Retrieved from www8.cao.go.jp/shougai/suishin/tyosa/
hikaku/gaiyou.pdf#
Chapman, E., & Smith, J. A. (2002). Interpretative phenom-
enological analysis and the new genetics. Journal of Health
Psychology, 7, 125-130. doi:10.1177/1359105302007002397
Dabrowska, A., & Pisula, E. (2010). Parenting stress and cop-
ing styles in mothers and fathers of pre-school children
with autism and Down syndrome. Journal of Intellectual
Disability Research, 54, 266-280. doi:10.1111/j.1365-
2788.2010.01258.x
Dunn, M. E., Burbine, T., Bowers, C. A., & Tantleff-Dunn, S.
(2001). Moderators of stress in parents of children with
autism. Community Mental Health Journal, 37, 39-52.
doi:10.1023/A:1026592305436
Emerson, E. (2003). Mothers of children and adolescents
with intellectual disability: Social and economic situa-
tion, mental health status, and the self-assessed social and
psychological impact of the child’s difficulties. Journal of
Intellectual Disability Research, 47, 385-399. doi:10.1046/
j.1365-2788.2003.00498.x
1318 Qualitative Health Research 23(10)
Gallagher, S., Phillips, A., Oliver, C., & Carroll, D. (2008).
Predictors of psychological morbidity in parents of chil-
dren with intellectual disabilities. Journal of Pediatric
Psychology, 3, 1129-1136. doi:10.1093/jpepsy/jsn040
Gray, D. E. (2003). Gender and coping: The parents of children
with high functioning autism. Social Science & Medicine,
56, 631-642. doi:10.1016/S0277-9536(02)00059-X
Hassall, R., Rose, J., & McDonald, J. (2005). Parenting stress
in mothers of children with an intellectual disability: The
effects of parental cognitions in relation to child char-
acteristics and family support. Journal of Intellectual
Disability Research, 49, 405-418. doi:10.1111/j.1365-
2788.2005.00673.x
Hastings, R. P., Allen, R., McDermott, K., & Still, D. (2002).
Factors related to positive perceptions in mothers of chil-
dren with intellectual disabilities. Journal of Applied
Research in Intellectual Disabilities, 15, 269-275.
doi:10.1046/j.1468-3148.2002.00104.x
Hastings, R. P., & Brown, T. (2002). Behavior problems of chil-
dren with autism, parental self-efficacy, and mental health.
American Journal on Mental Retardation, 107, 222-232.
doi:10.1352/0895-8017(2002)107<0222:BPOCWA>2.0.
CO;2
Hedov, G., Anneren, G., & Wikblad, K. (2002). Swedish
parents of children with Down’s syndrome: Parental
stress and sense of coherence in relation to employment
rate and time spent in child care. Scandinavian Journal
of Caring Sciences, 16, 424-430. doi:10.1046/j.1471-
6712.2002.00109.x
Hyman, P., & Oliver, C. (2001). Causal explanations, con-
cern and optimism regarding self-injurious behavior
displayed by individuals with Cornelia de Lange syn-
drome: The parents’ perspective. Journal of Intellectual
Disability Research, 45, 326-334. doi:10.1046/j.1365-
2788.2001.00325.x
Kimura, M., Yamazaki, Y., Mochizuki, M., & Omiya, T.
(2009). How is mothers’ awareness of pervasive devel-
opmental disorder in their elder children related to their
subsequent childbirth? Japanese Journal of Health and
Medical Sociology, 20, 50-63.
Kimura, M., Yamazaki, Y., Mochizuki, M., & Omiya, T.
(2010). Can I have a second child? Dilemmas of moth-
ers of children with pervasive developmental disorder: A
qualitative study. BMC Pregnancy and Childbirth,10:69.
doi:10.1186/1471-2393-10-69
King, G. A., Zwaigenbaum, L., King, S., Baxter, D.,
Rosenbaum, P., & Bates, A. (2006). A qualitative inves-
tigation of changes in the belief systems of families of
children with autism or Down syndrome. Child: Care,
Health & Development, 32, 353-369. doi:10.1111/j.1365-
2214.2006.00571.x
Kyosaren. (2011). Kazoku no kaigo jyokyo to futan ni tuite no
kinkyu chosa no kekka [Report from an urgent survey on
family caregiving and burden]. Retrieved from www.kyo-
saren.or.jp/research/2010/20101206kazokukaigo.pdf
Lawton, D. (1998). Complex numbers: Families with more
than one child (Social Policy Reports No. 8). York,
United Kingdom: Social Policy Research Unit, University
of York.
Mak, W. W. S., Ho, A. H. Y., & Law, R. W. (2007). Sense of
coherence, parenting attitudes and stress among moth-
ers of children with autism in Hong Kong. Journal of
Applied Research in Intellectual Disabilities, 20, 157-167.
doi:10.1111/j.1468-3148.2006.00315.x
Ministry of Health, Labor and Welfare. (2001). Heisei 12 nendo
chiteki shogaiji (sha) kiso chosa kekka no gaiyou [Summary
of results of basic survey of children and individuals with
intellectual disabilities, 2000]. Retrieved from www.mhlw.
go.jp/houdou/0109/h0919-3.html
Ministry of Health, Labor and Welfare. (2007). Heisei 17 nendo
chiteki shogaiji (sha) kiso chosa kekka no gaiyou [Summary
of results of basic survey of children and individuals with
intellectual disabilities, 2005]. Retrieved from www.mhlw.
go.jp/toukei/saikin/hw/titeki/index.html
Ministry of Health, Labor and Welfare. (2010a). About wom-
en’s health. Retrieved from www.mhlw.go.jp/seisakunit-
suite/bunya/kenkou_iryou/kenkou/woman/
Ministry of Health, Labor and Welfare. (2010b). Annual
Health, Labor and Welfare Report 2009–2010. Retrieved
from www.mhlw.go.jp/english/wp/wp-hw4/07.html
Nakata, Y. (2002). Kodomo no shogai wo dou juyousuru ka:
Kazoku shien to enjyosha no yakuwari [How to accept chil-
dren’s disabilities: The roles of family support and caregiv-
ers]. Tokyo: Otsuki Shoten.
Neece, C., & Baker, B. (2008). Predicting maternal parenting
stress in middle childhood: The roles of child intellec-
tual status, behavior problems and social skills. Journal
of Intellectual Disability Research, 52, 1114-1128.
doi:10.1111/j.1365-2788.2008.01071.x
Norizan, A., & Shamsuddin, K. (2010). Predictors of parent-
ing stress among Malaysian mothers of children with Down
syndrome. Journal of Intellectual Disability Research, 54,
992-1003. doi:10.1111/j.1365-2788.2010.01324.x
Oelofsen, N., & Richardson, P. (2006). Sense of coher-
ence and parenting stress in mothers and fathers of pre-
school children with developmental disability. Journal
of Intellectual & Developmental Disability, 31, 1-12.
doi:10.1080/13668250500349367
Olsson, M. B., & Hwang, C. P. (2002). Sense of coherence in
parents of children with different developmental disabili-
ties. Journal of Intellectual Disability Research,46, 548-
559. doi:10.1046/j.1365-2788.2002.00414.x
Orsmond, G. I., Lin, L. Y., & Seltzer, M. M. (2007). Mothers
of adolescents and adults with autism: Parenting
multiple children with disabilities. Intellectual and
Developmental Disabilities, 45, 257-270. doi:10.1352/1934-
9556(2007)45[257:MOAAAW]2.0.CO;2
Padencheri, S., & Russell, P. S. (2002). Challenging behav-
iours among children with intellectual disability. The hope
busters? Journal of Intellectual Disabilities, 6, 253-261.
doi:10.1177/1469004702006003035
Reid, K., Flowers, P., & Larkin, M. (2005). Exploring lived
experience. Psychologist, 18, 20-23.
Shearn, J., & Todd, S. (2000). Maternal employment and fam-
ily responsibilities: The perspective of mothers of children
with intellectual disabilities. Journal of Applied Research
in Intellectual Disabilities, 13, 109-131. doi:10.1046/
j.1468-3148.2000.00021.x
Kimura and Yamazaki 1319
Shinebourne, P., & Smith, J. A. (2010). The communicative
power of metaphors. Psychology and Psychotherapy:
Theory, Research, and Practice, 83, 59-73. doi:10.1348/1
47608309X468077
Siegel, K., Schrimshaw, E. W., & Pretter, S. (2005). Stress-related
growth among women living with HIV/AIDS: Examination
of an explanatory model. Journal of Behavioral Medicine,
28, 403-414. doi:10.1007/s10865-005-9015-6
Singer, G. (2006). Meta-analysis of comparative studies
of depression in mothers of children with and with-
out developmental disabilities. American Journal on
Mental Retardation, 111, 155-169. doi:10.1352/0895-
8017(2006)111[155:MOCSOD]2.0.CO;2
Smith, J. A., Flowers, P., & Larkin, M. (2009). Interpretative
phenomenological analysis: Theory and research. London:
Sage.
Stainton, T., & Besser, H. (1998). The positive impact of chil-
dren with an intellectual disability on the family. Journal
of Intellectual & Developmental Disability, 23, 57-70.
doi:10.1080/13668259800033581
Trute, B., Hiebert-Murphy, D., & Levine, K. (2007). Parental
appraisal of the family impact of childhood developmental
disability: Times of sadness and times of joy. Journal
of Intellectual & Developmental Disability, 32, 1-9.
doi:10.1080/13668250601146753
Tsuji, K. (2003). Women’s experiences of subsequent preg-
nancy and childbirth following delivery of a child with
Down’s syndrome. Journal of Japan Academy of Nursing
Science, 23, 46-56.
Wakiguchi, Y., Arikawa, A., Hayashi, K., & Abe, K. (2000).
Dainishi mo shogaiji wo shussanshita hahaoya he no
kakawari: Daiisshi he no enjyo wo toshite hahaoya he no
kakawari wo furikaeru [Relating to mothers who had sec-
ond children also with disabilities: Reflecting on relating
to mothers through assisting first children]. Kanagawa
Kenritsu Kodomo Iryo Senta Kango Kenkyu, 24, 5-8.
White, N., & Hastings, R. P. (2004). Social and profes-
sional support for parents of adolescents with severe
intellectual disabilities. Journal of Applied Research in
Intellectual Disabilities, 17, 181-190. doi:10.1111/j.1468-
3148.2004.00197.x
Youda, H. (1999). Shougaisha Sabetsu no Shakaigaku
[Sociology of disability discrimination]. Tokyo: Iwanami
Shoten.
Author Biographies
Miyako Kimura, MPH, PhD, is a visiting researcher at the
Department of Epidemiology and Preventive Health Sciences,
Graduate School of Medicine, The University of Tokyo, in
Bunkyo-ku, Tokyo, Japan.
Yoshihiko Yamazaki, PhD, is a professor at the Faculty of
Social Welfare, Nihon Fukushi University, in Chita-gun, Aichi,
Japan.