Japanese Journal of Social Welfare, 62 (5), 1–14 2022

Original Article

Support for Mothers with Intellectual Disabilities
During Their Pregnancy and Infant Parenting:Based on a Questionnaire Survey of Counseling and Support Specialists
Wakae Nobuhara1, * and Masaru Nagawa2
1
2

Graduate School of Comprehensive Human Sciences, University of Tsukuba, Ibaraki, Japan
Faculty of Human Sciences, University of Tsukuba, Ibaraki, Japan

Abstract Objectives: The purpose of this study was to clarify the situations of support provided
by Consultation Support Specialists (“Support Coordinators”) to mothers with intellectual disabilities (“MwID”) during their pregnancy and early infant parenting. Methods: Among the results of aquestionnaire survey of Support Coordinators with experience of working with MwID, we examined the responses to the items relating to support to MwID during their pregnancy and early
infant parenting, analyzing the data by simple tabulation and qualitative coding (Sato, 2008).
Results: Our study revealed that the assistance provided by Support Coordinators evolved andexpanded as MwIDʼs children grew up. The concrete examples of support identiﬁed in the study
constituted not only consultation support for MwID but also assistance in maintaining their emotional and physical health and safety. The study also identiﬁed other types of support, including
parenting support, which evolved along with the childrenʼs growth, and support relating to MwIDʼsfamily environment and daily diﬃculties. With regard to parenting support in particular, Support
Coordinatorsʼ direct assistance was conﬁrmed. Conclusion: The ﬁndings suggested that MwIDʼschildrenʼs growth modiﬁed the familiesʼ needs, prompting the nature of the support to adapt.
Key words: consultation support specialists, mothers with intellectual disabilities, child-rearing,parenting support, structure of support, human rights

I.

Introduction

1.

Parents with intellectual disabilities
The Convention on the Rights of Persons with
Disabilities was adopted in 2006. The conventionaﬃrms the right of person with disabilities(“PwD”) to marry and found a family (Article 23,(1)(a)). Further, states parties are bound to ʻrender appropriate assistance to PwD in the performance of their child-rearing responsibilitiesʼ
(Article 23 (2)).
* Correspondence address: Nagawa, M Lab, Universityof Tsukuba 1–1–1, Tennoudai, Tsukuba, Ibaraki Prefecture 305–8572, Japan
E-mail: s2130326@s.tsukuba.ac.jp(Received September 30, 2021; accepted February 17, 2022)

Research on support to parents with intellectual disabilities (“PwID”) has demonstrated that
PwID would be learned parenting knowledge
and skills through appropriate training interventions (Feldman et al., 1992; Llewellyn, 2002;
McConnell et al., 2008; Wilson et al., 2012
among others). Meanwhile considerable researchhas been conducted focused on social support1.
Research on social support has shown that it iseﬀective, in reducing the parenting stress ofmothers with intellectual disabilities (“MwID”)
who currently raise children, to provide social
support that is perceived to be satisfactory by themothers themselves (Feldman et al., 2002). It has
also been learned that problems relating to theuse of social support increase mental ill health

2

W. Nobuhara and M. Nagawa

experienced by parents with intellectual disabilities (Wade et al., 2015). In other words, for
PwID, social support is indispensable speciallyto maintain their mental health. With regard to
PwIDʼs support needs, previous studies have predominantly focused on PwID raising infants, andit has been pointed out that research into support
providers has been fairly limited (Koolen et al.,2020).
2. Parents with intellectual disabilities inJapan, their parenting and social support
Research by Nobuhara and Nagawa (2021)
revealed a strikingly low share of those living in
couples (1.65%) and those raising children under
the age of 18 (0.75%) among persons with intellectual disabilities who are using welfare services for persons with disabilities. Many of the
MwID were married to males without intellectual disability and had started raising children by
the time they reached adulthood without resorting to the welfare services. MwID have little
informal network, but their use of formal childrearing support services, which involves visiting
relevant services in person and making applications, was also found to be limited.
Nunokawa & Kase (2004) examined challenges and problems involved in the provision ofsocial support in diﬀerent stages of parenting by
PwID, revealing that the areas of challenges andproblems shift as children grow up, due to thevery nature of parenting. From this, it can be surmised that childrenʼs growth is closely related to
PwIDʼs daily needs and how social supportshould and could ideally be provided to PwID
requiring assistance. Yet, the research only covered the challenges and problems as perceived by
the main support providers, leaving the actual
situations of support and assistance largely
unclariﬁed. It should be pointed out that Nunokawa & Kaseʼs research (2004) has been conducted without taking gender into account. However, expectations about women with disability(“WwD”) nonetheless living in their gender role
do exist (Itou, 2000). Notwithstanding thisexpectation, no support system is in place to help

MwID in their life events including marriage,
childbirth, parenting, and caring partnerʼs parents
and thus requires establishment of such measures(Itou, 2000). This is not to agree with the genderstereotypes, but as Itou states, only after establishing support initiatives and enable WwD to
get married, give birth and rear child when theywish to, can we go on to discuss the genericissues currently tackled by women without disability (Itou, 2004).
3. Formal support for PwID during theirparenting period
In Japan, PwID can beneﬁt from parenting
support continually and at home mainly in theform of visits by public health nurses and homenursing care by welfare service providers for
PwD.2 The latter is provided under the Act on theComprehensive Support for the Daily and Social
Life of Persons with Disabilities(“The Act”).
When PwD wish to receive legally instituted
welfare services the welfare services institutedby The Act designed for them, it is required to
draw up and submit a Plan for the Utilization ofServices (“Plan”). The competent authorities thendetermine the provision of nursing care grants
based on the Plan. While it may be drawn up by
grant beneﬁciaries themselves, most PwD relyon Consultation Support Specialists (“Support
Coordinators”) who belong to consultation support oﬃces (“Support Oﬃces”). Support Coordinators create the plan by discussing with PwD
what support they require in their day-to-day
lives and arranging them. Plans drawn up by
Support Coordinators include not only legallyinstituted services the welfare services institutedby The Act but also services that are available
from specialists working within systems unspeciﬁed by The Act and, if any, support from thecommunity. That is to say, a survey targeting
Support Coordinators will help grasp an overall
picture of what support and from whom MwID
using welfare services receive over the course of
their parenting years.
To be sure, such a survey has limits in that it
cannot cover MwID who do not use legally insti-

Support for Mothers with Intellectual Disabilities during their Pregnancy and Infant Parenting

tuted welfare services the welfare services instituted by The Act. Nevertheless, no research has
been conducted thus far that clariﬁes the actual
situations of support provided to MwID in Japanin the process of bringing up their children to
adulthood, as far as we have been able to ascertain. It is for this reason that it appears necessary
and signiﬁcant to conduct a study that clariﬁes
the situations of support for MwID along with
their childrenʼs growth. Diﬀerent people lead different lives, and necessary support will surely
change in tandem with the childʼs growth andchanging family environment. However, knowing what support is provided to MwID should
enable us to consider appropriate social welfare
programs based on the needs in child rearing.
4.

PurposeThe purpose of this study is to clarity the situations of support arranged for or provided by
Support Coordinators to MwID during theirpregnancy and infant parenting.
II.
1.

Methodology

Survey subjects
The survey targeted Support Coordinators
working at 1,000 Support Oﬃces across Japan
who had previously assisted or were currently
assisting MwID.
The Support Oﬃces covered in the study wereselected by random sampling as follows: (1)Data available on the websites of the 53 Prefectures, 20 government ordinance-designated cities, and the Welfare and Medical Service Agency(WAM-NET) were consulted (from July 28
through August 3, 2019); (2) information wascollected from the websites, and a list of Support
Oﬃces (“List”) was drawn up Prefecture-by-Prefecture; (3) the distribution of questionnaire
forms among the Prefectures was determinedbased on the prefectural populations presented in
the 2015 National Census results (Statistics
Bureau, the Ministry of Internal Aﬀairs andCommunications 2016); (4) 1,000 Support
Oﬃces (9.15%) were selected by random sam-3

pling from among the 10,923 oﬃces on the List.
2.

Survey method
The survey was conducted from November 28,
2019 through March 31, 2020 in a self-administered questionnaire format with anonymity
option, with the forms sent to the selected 1,000
Support Oﬃces by post.
3.

Respondent attributes
The rate of response to the questionnaire was
31.8% (310/976; 22 not received and 2 disqualiﬁed). In total, 78 Support Coordinators
responded to the question items discussed in thispaper. Table 1 summarizes their attributes.
4.

Survey content
The questionnaire was designed with reference
to Hayashi & Kid (2000) and Nunokawa & Kase
(2004). The question items discussed in thispaper concerned support for MwID who possessed a medical rehabilitation handbook3 andused welfare services for PwD, and with whom
Support Coordinators were currently working or
had previously worked. These question items
were presented as multiple-choice questions andopen-ended questions (free descriptions). Manyof the MwID were raising children at home, butsome responses included descriptions of cases inwhich MwIDʼs child was entrusted to an infanthome.
To examine the correlation between support
and childrenʼs growth, the period during which
support is provided to MwID was divided into
seven stages according to the progression ofpregnancy and the childʼs age: (a) the ﬁrst 20
weeks (ﬁrst half-period) of pregnancy, (b) fromthe 21st week (second half-period) of pregnancy
to childbirth, (c) neonatal (from immediately
after childbirth to immediately before the childreaches one month of age), (d) infancy (from one
month to immediately before one year of age),(e) preschool childhood (from one year of age toimmediately before school enrollment), (f)school-age childhood (from primary school
enrollment to graduation), and (g) adolescence4

W. Nobuhara and M. Nagawa
Table 1

Demographic Characteristics of Subjects (n=78)

Item

Responses

No. of respondents

Remarks

Age group

20–29
30–39
40–49
50–59
60 and older

1
15
32
17
12

No response: 1

GenderMale
Female

20
58

Other: 0

Years of experience assisting
persons with disabilities

Below 3 yrs
3 yrs–below 5 yrs
5 yrs–below 10 yrs
10 yrs–below 15 yrs
15 yrs and above

2
8
16
21
26

Multiple responses: 3,
No response: 2

Years of experience incounseling support

Below 1 yr
1 yrs–below 5 yrs
5 yrs–below 10 yrs
10 yrs and above

3
27
38
9

No response: 1

No. of cases handled

Below 50
51–99
100–149
150 and above

28
27
12
8

No response: 3

Parenting experience

Yes
No

57
20

No response: 1

NB: The subject of this study is support coordinators.
Support Coordinators create the plan by discussing with PwD what support they require in their day-to-day lives andarranging them.

(from secondary school enrollment to immediately before 18 years of age).
The multiple-choice questions were composedby itemizing the types of support (“support
items”) based on previous research. Table 2 lists
the support items.
Although this questionnaire survey included
other question items, those unrelated to support
for MwID during their pregnancy and infant parenting are not discussed in this paper. Among theseven stages of pregnancy and parenting mentioned above, in this paper, our analysis focuseson the stages (a) to (d), that is, from pregnancy tothe childʼs early infancy.

5.

Analysis
The responses to the questions concerning thenumbers of consultation support users during thediﬀerent stages and support items provided wereﬁrst analyzed by simple tabulation.
Qualitative data comprising free descriptions
by respondents were analyzed by coding withreference to Sato (2008) in the procedure as follows: 1) verbatim records of the data to be discussed in this paper were created; they comprised (a) the ﬁrst half-period of pregnancy:
1,290 characters, (b) the second half-period ofpregnancy to childbirth: 1,632 characters, (c)neonatal: 1,350 characters, and (d) infancy:
1,971 characters; 2) one researcher developed acode for each excerpt with a meaning from theSupport for Mothers with Intellectual Disabilities during their Pregnancy and Infant Parenting

verbatim record of each stage; 3) three researchers examined each code thus developed andmodiﬁed it until all three agreed on it; 4) categories were developed while connections between
codes were examined and textual segments werecompared; 5) these steps were repeated under thesupervision of a researcher well experienced inqualitative research in order to enhance the validity of results.
6.

Ethical consideration
The objectives and intentions of this study
were explained in a written statement that also
indicated that prospective respondents were free
to decline participation, and a questionnaire form
completed and returned by a respondent wasconsidered as the respondentʼs consent to participation. Data collected in the study were anonymized so that speciﬁc individuals could not be
identiﬁed and were used exclusively for the
study. Due consideration was given to the publication of the research results so as not to enable
the identiﬁcation of individuals. The study was
conducted with approval from the Humanities
Research Ethics Committee of University of Tsukuba (code 2019-35A).
III.

Results

1. The numbers of Support Coordinators
assisting MwID during their pregnancy andparenting
The numbers of participants who provided
responses regarding each of the seven stages of
MwIDʼs pregnancy and parenting were (a) theﬁrst half-period of pregnancy: 16, (b) the second
half-period of pregnancy to childbirth: 18, (c)neonatal: 20, (d) infancy: 27, (e) preschool childhood: 33, (f) school-age childhood: 36, and (g)adolescence: 23 (with overlaps). Five of the 78
respondents wrote that they began working with
MwID after their children reached adulthood.
The way these numbers gradually increase as
pregnancy advances and children grow up suggests that few Support Coordinators start assisting MwID before or during the ﬁrst half-period

5of their pregnancy.
2.

Types of consultation support
The respondents were asked to select the support items corresponding to the assistance thatthey had provided or were providing to MwID.
As shown in Table 2, the results indicated thatover half the respondents were engaged in thetypes of support that constitute their primary
duty of consultation support (e.g., “consultation”
and “arrangement for support”). On the other
hand, the results also revealed that some Support
Coordinators were engaged in duties that did not
fall under their primary responsibility, notably
in-person assistance such as accompanying
MwID during medical consultations and instructing MwID in childcare procedures (the support
items shaded in the table).
3. Free descriptions about consultation support
The survey results mentioned in the preceding
section indicate that the Support Coordinators
have provided indirect assistance and, as theneed arose, direct assistance as well. Free
descriptions given by the respondents reveal
environments surrounding MwID, the processes
through which they have come to receive assistance, the details of support and so forth. The
results of our analysis point to four core categories of assistance provided by Support Coordinators to MwID: consultation support, (support for)emotional and physical health and safety, (assistance relating to MwIDʼs) family environmentand daily issues, and parenting support. Table
3-1 to 3-3 indicate categories and codes. In thispaper henceforth, the core categories, the categories and the codes shown in Table 3-1to 3-3 aremarked with three sets of brackets, respectively:{ }, < > and [ ]. Excerpts from the respondentsʼ free descriptions are italicized. The following are our detailed commentaries on the core
categories.
{Consultation support}
The support items classiﬁed under this core

6

W. Nobuhara and M. Nagawa
Table 2
Stage

a. First 20
weeks ofpregnancy

Support for MwID during their pregnancy and infant parenting
No. ofNo. ofrespondents
responchoosing this item dents

Support items(1) Accompaniment during medical consultations(2) Supported decision making on continuation of pregnancy(3) Arrangement for support(4) Provision of information on childbirth(5) Consultations(1) Accompaniment during medical consultations
b. Week 21 of (2) Preparation for maternity expenses
pregnancy(3) Preparation for childbirth
to child(4) Coordination with healthcare institutions
birth(5) Assistance with childbirth formalities

3
3
8
5
11
5
0
3
10
4

c. Neonatal(1) Coordination with healthcare and welfare institutions(2) Arrangement for support(3) Formation of a 24-hour support system(4) Instruction in childcare procedures

12
11
4
4

d. Infancy(1) Provision of information on social resources available in the community(2) Arrangement for support(3) Instruction in childcare procedures(4) Assistance with nursery admission formalities

14
18
8
10

Percentage

16

18.8%
18.8%
50.0%
31.3%
68.8%

18

27.8%
0.0%
16.7%
55.6%
22.2%

20

60.0%
55.0%
20.0%
20.0%

27

51.9%
66.7%
28.6%
37.0%

NB: The shaded items involve direct assistance.

category predominantly corresponded to the Support Coordinatorʼs duties. For this reason, under
this core category, similar codes were found in
diﬀerent stages (see Table 3-1). The descriptionsof these support items mainly concerned the situation in which consultation support began andthe contents of consultation support.
Firstly, many descriptions of the situation inwhich consultation support began were foundunder the category <consultation support/supported decision making>. For example, a Support Coordinator who had already known the
MwID or the childʼs father before her pregnancy
began working with her upon receiving a request
for [consultation on pregnancy/report of pregnancy], which is a code. In other cases, Support
Coordinators began assisting the MwID in theircharge when another organization that had initially looked after her contacted them after her
pregnancy was discovered (e.g., [referral fromother (healthcare, medical or administrative)
organization], [referral from a nursery]).

As for descriptions about the contents of consultation support, the code [consultation on daily
life and livelihood] relating to daily diﬃculties
and poverty was found in many stages. To help
MwID cope with daily diﬃculties, including thediﬃculty of child rearing, the <formation of acooperation and support system> of professionals took place. Within the category <formation ofa cooperation and support system>, there were
diﬀerences depending on stages. For example,
during MwIDʼs pregnancy, the principal focus
was [multi-organizational cooperation], which
was promoted mainly through the [formation ofa support system through support meetings]. On
the other hand, the free descriptions indicatedthat after the childbirth, while the support systemthus formed was maintained, [case meetings andconsultation] were conducted, which developed
into [support through multi-organizational cooperation]. The category <arrangement for support> also evolved through the stages. In concrete terms, immediately before and afterCore
categories{ }Categories〈 〉

Consultation support/Supported decision making

Formation of a cooperation and support system

Arrangement for support

Arrangement for support

Coordination for morehome nursing care visits

Coordination with employer

Support for older children/
support coordination

Formation of a support
system, support meetings
for that purpose

Formation of a support
system through support
meetings

Information shared with the organization providing parenting support; arranged for helpersʼ support.
Support structure was built through meetings. At that time, MwID was shifting to community support from a disabled childrenʼs facility
after graduating from a special needs school.
Communication and coordination with the helper was continued, cooperation maintained with the healthcare institution and public health nurse.
Assisted in preparing an environment necessary for a newborn in collaboration with the Child and Family Section and Health Section.
Formalities for nursery admission were completed by the childʼs parents; coordination with the nursey following admission was conducted by the public health nurse and the Ward Oﬃce. Support Coordinators shared duties with them, taking up duties such as advice on
what to do at the nursery and listening to the parentsʼ complaints about the nursery.

(d)
(a)

24-hour response by telephone
Provision of information
on social resources

After one week of hospitalization [for childbirth], MwID joined her husband at his place to start a new life together; handover of administrative matters necessitated by relocation turned out to be complex.
Arranged for an increased frequency of the welfare service (visits by home nursing care helpers) that MwID had been using for a longwhile.
A 24-hour system was not put in place because of the husbandʼs presence, but the number of helpers was increased to be ready for emergency response.
Arranged for regular visits by a public health nurse, consultations on development, etc.

(c)
(a)

Handover due to relocation
Arrangement for support inhousekeeping and parenting

Arrangement for support

Provided consultations during MwIDʼs pregnancy with her second child about how to reconcile care for the severely handicapped ﬁrst born.
Coordinated support immediately before and after childbirth for older children with their related organizations; prepared for service use(short-term residential facility).
MwID quit her work at a facility upon learning of her pregnancy; for physical health management, she started going to the type-B oﬃcethat she used to go before.

(a)
(b)
(a)

(d)

(c)

It was diﬃcult for the parents to raise several children, and cooperation with the child welfare center was indispensable but turned out tobe insuﬃcient.

(c)

(a)

Problems with cooperation

Information sharing mainly
through case meetings

Emergency meeting of caregivers and nighttime assistants was convened [following request for advice from the father living in a group home
and the referred mother]; cooperation was promised on condition that a day assistant would be posted at the group home if it would take charge.
Case meetings linking the public health center, public health nurses, city hall personnel and midwife were repeated.
Meeting of related parties was held at University Hospital after childbirth; contents of support, roles of diﬀerent organizations, information sharing, etc. were reconﬁrmed.

Case meetings andconsultations
(b)
(c)

(b)
(c)
(d)

Infant home and Child and Family Center. Visiting days. Arrangement for a mobility assistant. All times. 24-hour reception of telephone calls.

(d)Support throughmulti-organizational
cooperation andcollaboration

During MwIDʼs pregnancy, a public health nurse worked as key caregiver, providing most support; immediately after childbirth, Support Coordinator drew up a Plan and coordinated with the support oﬃce to enable MwID to beneﬁt from public services (housekeeping assistance).

(b)

Consultations on daily lifeand livelihood

NB 1: Information based on which addresses and individuals could be identiﬁed was anonymized during the production of verbatim records. The example descriptions are English translations of the verbatim records.
NB 2: The phrases/terms in [ ] denote corrections or clariﬁcations on descriptions given on the questionnaire sheet or additional elements obtained by the author from the respondents by telephone.
NB 3: The letters designating the stages of description are (a) the ﬁrst half-period of pregnancy, (b) the second half-period of pregnancy to childbirth, (c) neonatal, and (d) infancy.
NB 4: The cells of codes corresponding to direct assistance by Support Coordinators are shaded.

Consultation support

Coordination with support
for older children

Consultations andcooperation with multiple
organizations

Multi-organizational
cooperation

Support throughmulti-organizational
cooperation

Consultations on daily problems.
Consultations on family budget began at the same time (MwID seeking service of National Council of Social Welfare, her mother-in-law
seeking advice on autonomy)
Provided emergency consultations (money problem, fatigue from parenting, etc.)

(a)
(b)

Consultations on family
budget and poverty

Consultations on daily
issuesReferral from a nursery(d)

The cityʼs public health center contacted after her pregnancy was conﬁrmed.
Visited MwID after a request for planning support from a healthcare institution and the cityʼs disability welfare section.
Received a telephone call from a day nursery asking for support for a mother of a newborn baby and a 1-year-old child.

(a)
(b)
(d)

Referral from other(healthcare, medical oradministrative) organization

Referral from a publichealth center

Planning

MwID not aware of pregnancy until second half-period. Handbook for person with ID not yet obtained at this stage. Support Center was
working with her sibling (with ID; handbook holder). OB/GYN consultation following request for advice.

(b)

Conﬁrmation of MwIDʼs
intention

Detection of pregnancy inthe second half-period

Example descriptions

After pregnancy was detected, MwIDʼs intention to give birth was conﬁrmed.
There was no other choice but to go ahead until childbirth; MwID decided to give birth, after her intention was conﬁrmed.

Stage ofdescription

(a)
(b)

supported decision making
about childbirth

Supportede decision making
about childbirthStage (d) Code[ ]Advice sought by telephone. Pregnancy reported. Severe vomiting and dizziness; taken to hospital two or three times.
Request for advice, followed by consultation at OB/GYN.

Consultations on pregnancy

Consultations on pregnancy/
report of pregnancy

Stage (c) Code[ ]Structure of support provided by Support Coordinators to MwID

(a)
(b)

Stage (b) Code[ ]Stage (a) Code[ ]Table 3-1

Support for Mothers with Intellectual Disabilities during their Pregnancy and Infant Parenting
7

Emotional andphysicalhealth andsafetyEmotional and physical health and safety
MwID reported her salpingectomy because she didnʼt want a third child.

After two months [of moving into the husbandʼs parentsʼ house], MwID complained of the husbandʼs violence during a row; MwID was
temporarily placed in a shelter.

(c)
(d)

Support mainly provided by MwIDʼs family.
Support mainly provided by the husband and the parents living together.
Recommended early admission of the baby to a nursey as MwIDʼs parenting skills were not reliable; since the motherʼs employment is acondition for nursery use, had MwID obtain her handbook for persons with ID and register at the employment support center to receive
vocational training.

(d)Assistance in
employment
searchSupport for the motherʼs
employment

(d)
(c)
(d)

Support from family

Support from family andrelatives

NB 1: Information based on which addresses and individuals could be identiﬁed was anonymized during the production of verbatim records. The example descriptions are English translations of the verbatim records.
NB 2: The phrases/terms in [ ] denote corrections or clariﬁcations on descriptions given on the questionnaire sheet or additional elements obtained by the author from the respondents by telephone.
NB 3: The letters designating the stages of description are (a) the ﬁrst half-period of pregnancy, (b) the second half-period of pregnancy to childbirth, (c) neonatal, and (d) early infancy.
NB 4: The cells of codes corresponding to direct assistance by Support Coordinators are shaded.

Family environment and daily issues

Support fromfamilyProposal for the use of pregnancy helpers in view of the condition of the room refused due to expenses.
MwID reported irritation because of the babyʼs crying at night; short-term stay in a residential facility was recommended, but MwID
declined because she was afraid that the facility might take custody of the baby.
Despite advice on buying good food items [for preparing baby food], the cancellations of helpersʼ support became frequent.

(b)
(c)

Diﬃculty in using support
services

Diﬃculty inusing support
services

Diﬃculty in using pregnancy Proposal for service use
helpers due to poverty
refused by the mother

Helper visits to support MwID and watch over the baby; support terminated due to MwIDʼs lack of awareness.

(d)Listened to MwID on the phone about her relationship with boyfriend, rows with her [husband], problems with her mother and younger
brother, parenting stress, and so forth.
MwID did not make progress in baby food preparation since she did not understand the need for cooking well, due to her childhood environment void of home cooking.

Motherhood, maternal
awareness(c)

The need for a constant monitoring system was a major issue if MwID, with epileptic ﬁts, was to raise a newborn herself.

ParenthoodDiﬃculty in interpersonal
relationships and parenting(b)

MwID got married while pregnant and moved from the welfare facility to the husbandʼs parentsʼ house; home visits began in response tothis major environmental change.

(d)System for monitoring the childin view of the motherʼs disease

(b)

(a)

Diﬃculty in obtaining
support from family
members living together
Relocation

The employment support center contacted the childʼs father and asked his ideas about the future.
Assisted MwIDʼs boyfriend in ﬁnding employment.

(a)
(a)

Dealing with and support
for the childʼs father

MwID cannot reply on her family living together for support after childbirth because the family also needs support; she wanted a support
system to be put in place for childbirth.

MwIDʼs mother (also with ID) supported in the room next door; the mother (grandmother) also handled money and spent it on gambling.

Economic exploitation by
MwIDʼs birth motherPhysical aggression by thehusband(d)Marriage/living together
with parents-in-law

Coordinated for better relationship with her former foster parents.

(d)

Salpingectomy

Visited her when she was sick; advised to go see a doctor.

(d)Advice on health issues
Coordination with family
members for better
relationships

Support for emotional
stability

Increased meeting frequency to mitigate MwIDʼs anxiety.
Talked with MwID to give advice-like tips on parenting and introduced the community service oﬃce to [reduce] emotional burden on her

Example descriptions
Regular medical consultations in preparation for childbirth, and to treat ﬁts; medication started.

Stage ofdescription

(a)
(c)

Stage (d) Code[ ](a)Stage (c) Code[ ]Support for mitigating
anxiety

Stage (b) Code[ ]Support relating to ﬁts

Stage (a) Code[ ]Structure of support provided by Support Coordinators to MwID

Inﬂuence of MwIDʼs
upbringing

Daily andparenting issues
and diﬃculties

Environmental changes

Family also
requiringsupportViolence/
exploitation
by family

Sterilization

Categories
〈 〉

Core
categories{ }Table 3-2

8
W. Nobuhara and M. Nagawa

Core
categories{ }Accompaniment to theclinic and related support

Assistance withpreparation for childbirth

Accompaniment
to OB/ GYN
clinic and othermedicalinstitutions

Preparation forchildbirth

Assurance of thechildʼsdevelopment

Admission of thebaby to an infant
homePreparation for, assistancewith formalities for, andadvice on childbirth

Accompaniment to theclinicStage (b) Code[ ]Regular visits by a public health nurse, [activity center] personnel and Support Coordinator (with one case meeting held every few
months).
Support was mainly provided by a public health nurse and parenting assistants; Support Coordinator provided backup support together
with the welfare facility [that MwID used to go to before], checking her intentions, coordinating with her former foster parents for better
relations, or serving as a “shelter” when she had quarrels with her husband.
Support by helpers continued.
24-hour support system was put in place, with day support [at the group home] until the baby was old enough to be sent to a day nursery(1 years of age).
All-around parenting support by personnel of a living support facility for mothers and children.

(c)
(d)

(d)
(c)

Multi-organizational
support through visits

Support by helpers

One month after [applying for nursery admission], MwID contacted, saying that she wanted to admit the baby to a nursery soon; inquiries made at Family Support facilities and private nurseries; visited MwID, who was irritated and talked about her stress.

(d)

Coordination for infant
home admission and visits

MwID was interested in raising the child at home, but Support Coordinator recommended the use [of nursery] due to the motherʼs frequent irritation; ﬁlled out nursery application documents; MwID was not sure what to write in a statement; worked it out together andprepared a truthful document.

(d)Support for the childʼsdevelopment and special
needs education

Coordination for infant
home admission and visits

Support meetings in
response to nurseryʼs
diﬃculty in dealing with
MwID and child

Issues while on waiting
list for nursery admission

Assistance relating tonursery admission

Assisted helpers in baby food preparation; waited for MwIDʼs motherhood to develop.

(d)Parenting support byhelpers

Infant home as a solution until the baby is in a more stable condition; the mother often visited the baby there with the older child.
The childʼs development will be followed once the mother and child start going to a special needs education center together; related organizations were contacted.

(d)Helper visits to support MwID and watch over the baby; support terminated due to MwIDʼs lack of awareness. Meetings convened inview of the nurseryʼs diﬃculty; support needs were conﬁrmed.

(c)

(d)

(c)

Following childbirth, a public health nurse visited every day to instruct MwID in bathing the baby and other procedures, but her level ofunderstanding was low, and the health nurse was asked to give instruction in procedures modiﬁed to suit her ability.
The cityʼs public health nurse requested instruction in baby food preparation and feeding and parenting support; visited MwID andadvised her about how to make and give baby food, diﬀerent stages of baby food and so on.

(d)Preparation of baby food,
explanation about andadvice on the weaning
periodPublic health nurseʼs
instruction inparenting skills(d)All-around parenting
support24-hour support system

Multi-organizational
support through visits

The public health nurse increased visits to ensure the newbornʼs safety and instruct MwID in parenting.
Public health nurseʼs periodical visit (once/week) continued to check on the babyʼs condition, including body weight management, andthe motherʼs condition.

(c)
(d)

Public health nurseʼsvisits and similar support

Maternity education carried out with support from the Childrenʼs Aﬀairs Section.
Accompanied MwID to the public health center to have a maternity handbook issued there; pregnancy reported to the Childrenʼs Welfare
Center; contacted MwIDʼs Type-B oﬃce to notify her absence for a while.

(a)
(b)

Living conditions inspected through a monthly visit.

Accompanied MwID for hospital consultations; explained the situation to the physician.
MwID mainly accompanied by a helper for medical consultations; Support Coordinator had to accompany the mother when she was
expected to receive important information.

Example descriptions

(a)
(b)

Stage ofdescription(c)Support mainly provided
by public health nurse

Stage (d) Code[ ]Inspection of living
conditions

Stage (c) Code[ ]Structure of support provided by Support Coordinators to MwID

NB 1: Information based on which addresses and individuals could be identiﬁed was anonymized during the production of verbatim records. The example descriptions are English translations of the verbatim records.
NB 2: The phrases/terms in [ ] denote corrections or clariﬁcations on descriptions given on the questionnaire sheet or additional elements obtained by the author from the respondents by telephone.
NB 3: The letters designating the stages of description are (a) the ﬁrst half-period of pregnancy, (b) the second half-period of pregnancy to childbirth, (c) neonatal, and (d) early infancy.
NB 4: The cells of codes corresponding to direct assistance by Support Coordinators are shaded.

Parenting support

Assistance
relating tonursery use

Support for theacquisition ofparenting skills

Abundant
support formother and child,including visits

Stage (a) Code[ ]Categories〈 〉

Table 3-3

Support for Mothers with Intellectual Disabilities during their Pregnancy and Infant Parenting
910

W. Nobuhara and M. Nagawa

childbirth, [coordination with support for(MwIDʼs) older children] was carried out, andfollowing the childbirth and during child rearing,support was arranged in such a manner as toanticipate and prepare for emergencies. Theseﬁndings point to the correlation between the core
categories {consultation support} and {parenting
support} (the latter is discussed below).
{Emotional and physical health and safety}
As shown in Table 3-2, this core category
assembles descriptions of problems relating to
MwIDʼs health and safety and responses to these
problems. Some Support Coordinators responded
to the MwIDʼs problems so as to maintain her
emotional and physical health along with theprogression of her pregnancy, as exempliﬁed by
the codes [support relating to ﬁts], [support foremotional stability] and [coordination with family members for better relationships]. There werealso cases in which MwIDʼs emotional problems
were caused by <violence/exploitation by(MwIDʼs) family>. Detailed descriptions werealso given of cases of emergency assistanceinvolving such abuse.
Except for the case of one MwID who had
undergone a surgical <sterilization>, there were
no descriptions of invasive medical procedures
or family planning.
{Family environment and daily issues}
The descriptions under this core category
revealed MwIDʼs family environments and daily
issues, as indicated in Table 3-2. These descriptions are commented on in detail below.
There were descriptions of MwID who wereable to obtain <support from family> and completed parenting without resorting to external
welfare services for PwD. Some descriptions
about MwIDʼs family environments suggested
the existence of <family members also requiringsupport> and <environmental changes>. Conversely, for MwID in a family environment with<family members also requiring support>, theSupport Coordinators had to arrange for the useof public welfare services for PwD because the

MwID in their charge were not able to beneﬁt
from suﬃcient support. With respect to the useof such services, MwIDʼs [Inﬂuence of MwIDʼs
upbringing] and [Motherhood] were pointed out
as issues.
The descriptions of daily issues indicated theway these issues and support provided in
response to them changed as MwIDʼs children
grew. Concretely, in one case, it was stated thatduring the MwIDʼs pregnancy, there was muchapprehension for a system to be put in place for<monitoring the child in view of the motherʼsdisease> . Following the childbirth, more speciﬁc
problems, such as “irritation because the baby
cried a lot at night (example excerpt),” werenoted as daily issues. There was also a case inwhich assistance was provided in arranging for
the MwIDʼs employment once the baby was oldenough to be entrusted to a day nursey. This wasintended to reduce the child-rearing burden on
the MwID. Some descriptions pointed to the<diﬃculty in using (public) support services>,
which were provided presumably to deal withdaily issues. The <diﬃculty in using support services> derived from diverse aspects and causes,
ranging from expenses to apprehensions about
the childʼs custody and the motherʼs refusal ofhelpersʼ advice.
{Parenting support}
The descriptions under this core category
pointed to the general tendency of assistance
expanding and evolving as the child grew up, asshow in Table 3-3. Direct assistance by Support
Coordinators, identiﬁed in Table 2, was concentrated in {parenting support} (support items of
direct assistance are shaded in the table). The
chronological evolution of direct assistance
begins with [accompaniment to the clinic] and[preparation for, assistance in formalities for, andadvice on childbirth], found among the categories during MwIDʼs pregnancy. Accompaniment
to medical institutions available within theframework of public welfare services for PwD is
in fact assistance with travelling to and frommedical institutions and does not cover accompa-

Support for Mothers with Intellectual Disabilities during their Pregnancy and Infant Parenting

niment during medical consultations. Because ofthis limitation, “the Support Coordinator had toaccompany the mother when she was expected toreceive important information [during the consultation].” There were also cases in which Support Coordinators ﬂexibly responded to needs
personally expressed by the MwID in theircharge, as expressed in this description: “Shecalled me saying that she had torn up the documents required for hospitalization [for childbirth]
because she was feeling irritated; so I visited her
and ﬁlled out the documents for her.” As for<support for the acquisition of parenting skills>,
which commenced following childbirth, large
numbers of public health nurses and care providers were involved in home nursing care for
MwID. In some cases, however, Support Coordinators were also involved in [preparation of baby
food, explanation about and advice on the weaning period]. In the infancy stage, under the category <assistance relating to nursery use>, Support Coordinators assisted the MwID in
preparing application documents for nursey
admission etc.
As with direct assistance, indirect assistancealso expanded as the child grew. Support Coordinators were expected to engage in communication and coordination with public health nurses
and other personnel involved in home nursing
care and the childʼs nursery and other nursing
facilities, as well as in arrangement for support
and consultation support.
The MwIDʼs child was entrusted to an infant
home in multiple cases. In such cases, Support
Coordinators provided [assistance in infant homeadmission including support for the parents on
the occasion] and assistance relating to [visits tothe child at the infant home], thereby continuing
support for the mother and the child. The reasonsfor the childʼs admission to an infant home givenin the free descriptions included the following:“the decision that parenting would be diﬃcult,”“as a solution until the baby is in a more stablecondition,” and “the baby was temporarily admitted to an infant home because it was diﬃcult for[the babyʼs parents] to raise him due to constant11

trouble between them.” Other than the cases inwhich the parentsʼ constant trouble was the maincause of their diﬃculty in parenting, there were
no descriptions of PwIDʼs intentions or assessing
the desirability of parent-child separation.
IV. Discussion
This paper has presented the study we conducted to analyze the assistance that Support
Coordinators provided to MwID during theirpregnancy and infant parenting so as to clarify
the actual situations of support for MwID in
Japan. Our study that Support Coordinators was
not only for {consultation support} but also inthe {emotional and physical health and safety}of MwID. Essentially, Support Coordinators
work with individuals with disabilities. However,
our study revealed that, in assisting MwID, Support Coordinators responded to their and theirfamiliesʼ needs by providing {parenting support}
and even helping them deal with their {family
environment and daily issues} in some cases.
Particularly in {parenting support}, Support
Coordinators were providing direct assistance.
Such growing assistance revealed the evolution
and expansion of the Support Coordinatorʼsassistance as MwIDʼs children grew up.
As stated in {family environment and daily
issues}, assistance was arranged based on the
degree of MwIDʼs diﬃculty in doing householdtasks deriving from [Inﬂuence of MwIDʼs
upbringing] and the degree of [Motherhood],suggesting the social expectations placed upon
MwID of their gender. Meanwhile, Support
Coordinators did not reach out to MwID if they
were able to obtain support from their partnerand family members. This is probably why Support Coordinators began working with MwID
after their pregnancy became known in manycases (Nobuhara & Nagawa (2021: 112). Meanwhile, in cases where partner and family members were not able to support MwID, some began
working with MwID following a referral from a
local governmental organization, healthcare
institution or child rearing support organization

12

W. Nobuhara and M. Nagawa

that the women used upon becoming pregnant.
Many formal organizations, including intermediary organizations and welfare service oﬃces for
persons with disabilities, cooperated and collaborated in assuring assistance to MwID. In such asituation, the expansion of indirect assistanceseems presumably inevitable. On the other hand,
our study conﬁrmed direct assistance provided
by Support Coordinators which are not their primary tasks, represented by the seven codes in theshaded cells in Table 3-3. Among them, we focus
our discussion here on [accompaniment to theclinic], [preparation of baby food, explanation
about and advice on the weaning period] and[assistance relating to (the childʼs) nursery
admission]. With regard to [accompaniment tothe clinic], the public welfare services for PwD
provided under The Act do not fully cover
MwIDʼs medical consultations, as mentioned
above. However, it is believed that MwIDʼs regular adherence to prenatal checkups largely
depends on the availability of accompaniment by
support providers (Kid & Hayashi, 2002: 52).
That is to say, there is a need to develop a structure that ensures both reasonable considerationon the part of healthcare providers and personal
support by MwID advocators during MwIDʼs
consultations at the OB/GYN clinic. As for[preparation of baby food, explanation about andadvice on the weaning period], our study foundsome cases in which such support was provided
by public health nurses and/or home nursing careproviders. In other words, these acts should notnecessarily be considered as duties for Support
Coordinators. In the cases where Support Coordinators engaged in these types of assistance,
they probably did so while being conscious of
the assignment of public health nurses and homenursing care providers in the region or by ﬂexibly responding to MwIDʼs needs. PwID require
ﬂexible support, and assistance to them must
ﬂexibly and closely follow the familiesʼ needs at
any given time (Tarlton et al., 2006; IASSIDD
Special Internet Research Group on Parents andParenting with Intellectual Disabilities, 2008).
However, the free descriptions given by Support

Coordinators in our survey suggest that Japanʼssocial welfare system is not constructed in such a
way as to allow for ﬂexible responses to theneeds of concerned persons and their families.
For example, child and family welfare systemdoes not assume parenting by MwID, so Support
Coordinators seek cooperation of welfare services for PwD. However, neither do the welfare
services for PwD focus much on MwIDʼs needs
concerning life events such as marriage, pregnancy, childbirth and parenting nor the lingering
gender roles, making it diﬃcult for Support
Coordinators to arrange social resources for providing social support for MwID. It is fair to saythat these circumstances required Support Coordinators to provide direct support.
Therefore, it is necessary that MwID raisingchildren also be made eligible to receive “visiting
care for persons with severe disabilities”, a service currently provided only to severely disabled
people. The visiting care for persons with severe
disabilities is operated ﬂexibly, enabling provision of a variety of assistance for a long periodof time by support workers familiar to the MwIDin question. To be more concrete, home-based
training programs on parenting carried out outside Japan and nimble and well-thought assistance including escort services for children visiting hospital, going to nursery school, and MwID
visiting public institutions will be possible(Llewellyn et al., 2002). Furthermore, theresearch points out the existence of mothers
whose intellectual disability manifests during
their parenting period (Llewellyn et al., 2010:
Nobuhara & Nagawa, 2021). Given this situation, it is also essential to establish a parenting
support system available to anyone as long as
they are raising children.
V. Conclusion and Limitations
This study has also found that support by Support Coordinators for MwID before and during
their pregnancy and neonatal and infant parenting stages expands and evolves as their children
grow up, necessitating Support Coordinators toSupport for Mothers with Intellectual Disabilities during their Pregnancy and Infant Parenting

engage in direct assistance, which are not theirprimary duties. This situation revealed the need
for welfare services that covers circumstances
not assumed by both child and family welfare
services and welfare services for PwD.
Based on theses, I would like to recommend
the following two improvements, namely, 1.
Expand the scope of people eligible for receiving
visiting care for persons with severe disabilities.
2. Change child and family welfare services toones that assume the existence of mothers with
diﬀerent diﬃculties.
The study only focused on MwID already beneﬁtting from welfare services for PwD, andtherefore it is limited in that many other MwID
were not taken into consideration. This limitation
should be addressed in future studies.
Footnote12

3

In this study, the term “social support” isdeﬁned as “aﬃrmative, active and mutualfunctions that occur in social relationships[including those with family members andrelatives] that surround individuals, such as
conﬁdence, aﬃrmation, information sharing,
and assistance in the form of material goods,
labor and services (Kita, 1997).
Some municipalities also dispatch pregnancy
and postpartum helpers. Some municipalities
also operate their own voluntary parenting
support programs.
The Medical rehabilitation handbook isissued to those who are judged to have intellectual disabilities by the child guidance center or the Rehabilitation Consultation oﬃce
for people with intellectual disability (Ministry of Health, Labor & Welfare, 2020).
Acknowledgments

We would like to express our heartfelt gratitude to all those who cooperated with us in conducting the survey and the others concerned.

13

References
Booth T, Booth W (1994). Parenting Under Pressure:
Mothers and fathers with learning diﬃculties.
pp. 54–68. Buckingham, Open University Press.
Director of Child and Family Policy Bureau, Ministry of
Health, Labor and Welfare (2020). Implementation of
the medical rehabilitation handbook system. https://www.mhlw.go.jp/content/12200000/000712219.pdf(accessed on February 6, 2022) (in Japanese)
Feldman MA, Case L, Garrick M, et al. (1992). Teaching
child: Care skills to mothers with developmental disabilities. Journal of Applied Behavior Analysis 25:
205–215.
Feldman MA, Varghese J, Ramsay J, et al. (2002). Relationships between social support, stress and mother–child interactions in mothers with intellectual disabilities. Journal of Applied Research in Intellectual
Disabilities 15(4): 314–323.
Hayashi T, Kid K (2000). Overview of factual investigation about support for raising children by the life support centers: “Assignment about raising children”. pp.
33–86. Inclusion Japan (Teo-Tsunagu-Ikuseikai). (inJapanese)
IASSID Special Interest Research Group on Parents andParenting with Intellectual Disabilities (2008). Parents
labelled with intellectual disability: Position of the
IASSID SIRG on parents and parenting with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities 21(4): 296–307.
Itou C (2000). Chapter 9 marital life of women with disabilities and their views of people with disabilitiesbased on interviews with married women with disabilities. In: Sugimoto K, ed. Gender Ethics and Social
Welfare, pp. 154–170. (in Japanese)
Itou C (2004). Chapter 8 disability issues from a gender
perspective-toward the development of measures tosupport the “Independence” of women with disabilities.
In: Sugimoto K, ed. Feminist Welfare Policy Principles, pp. 179–197.
Kid K, Hayashi T (2002). The investigation of the actual
condition among the supporting systems for the womenwith intellectual disability making child-rearing. Bulletin of Institute of Nursing, Yamaguchi Prefectural University 6: 45–53. (in Japanese and English abstract)
Kita A (1997). Characteristics of the social support for
pregnant women in Japan: according to concept of fourkinds of social support. Journal of Japan Academy of
Nursing Science 17(1): 8–21. (in Japanese and English
abstract)
Koolen J, Verharen L, Oorsouw W, et al. (2020). Support
needs of parents with intellectual disabilities: Systematic
review on the perceptions of parents and professionals.
Journal of Intellectual Disabilities 24(4): 559–583.
Llewellyn G, McConnell D, Russo D et al. (2002). Home

14

W. Nobuhara and M. Nagawa

based programs for parents with intellectual disabilities: Lessons from practice. Journal of Applied
Research in Intellectual Disabilities 15(4): 341–353.
Llewellyn G, Traustadottir R, McConnell D, et al. (2010).
Parents with intellectual disabilities: Past, present, andfutures. West Sussex, Wiley-Blackwell.
McConnell D, Matthews J, Llewellyn G, et al. (2008).
“Healthy Start.” A national strategy for parents withintellectual disabilities and their children. Journal of
Policy and Practice in Intellectual Disabilities
5(3):194–202.
Nobuhara W, Nagawa M (2021). The prevalence andsocial network of domestic partnerships, married lives
and parenting of japanese people with intellectual disabilities: According to the questionnaire survey of consultation and support center. Japanese Journal of Disability Sciences 45: 103–116. (in Japanese and English
abstract)
Nunokawa C, Kase S (2004). Parenting support for parents with intellectual disabilities and the acquisition ofparenthood: Based on the results of a continuous survey on daily support workers. Support 51(9): 50–58.
(in Japanese)
Sato I (2008). Qualitative data analysis: Principles, meth-ods, practices. Shin-yo-sha. (in Japanese)
Statistic Bureau, Ministry of Internal Aﬀairs and Communications (2016). Summary of basic tabulated results ofthe 2015 National Census, Part II. Ministry of Internal
Aﬀairs and Communications https://www.stat.go.jp/
data/kokusei/2015/kekka/kihon1/pdf/gaiyou2.pdf(accessed on September 13, 2021) (in Japanese)
Tarleton B, Ward L, Howarth J (2006). Finding right support?: A review of issues and positive practice in supporting parents with learning diﬃculties and their children. pp. 45–63. The Baring Foundation.
Tucker MB, Johnson O (1989). Competence promoting
vs. competence inhibiting social support for mentallyretarded mothers. Human Organization 48(2): 95–107.
Wade C, Llewellyn G, Matthews J (2015). Parent mental
health as a mediator of contextual eﬀects on parents
with intellectual disabilities and their children. ClinicalPsychologist 19: 28–38.
Wilson S, McKenzie K, Quayle E, et al. (2012). A systematic review of interventions to promote social support and parenting skills in parents with an intellectual
disability. Child: Care, Health and Development 40(1):7–19.