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Working but not employed: Mothers of adults withintellectual disability as hidden workers
a

ab

c

Yueh-Ching Chou , Shih-Chih Wang , Heng-Hao Chang & Li-Yeh FuaaInstitute of Health and Welfare Policy, National Yang-Ming University, Taipei, TaiwanbDepartment of Education and Research, Taipei City Hospital, Taipei, TaiwancDepartment of Sociology, National Taipei University, New Taipei, Taiwan
Published online: 24 Jul 2014.

To cite this article: Yueh-Ching Chou, Shih-Chih Wang, Heng-Hao Chang & Li-Yeh Fu (2014): Working but not employed:
Mothers of adults with intellectual disability as hidden workers , Journal of Intellectual and Developmental Disability, DOI:
10.3109/13668250.2014.940862
To link to this article: http://dx.doi.org/10.3109/13668250.2014.940862

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Journal of Intellectual & Developmental Disability, 2014
http://dx.doi.org/10.3109/13668250.2014.940862

ORIGINAL ARTICLE

Working but not employed: Mothers of adults with intellectual disability
as hidden workers†

YUEH-CHING CHOU1, SHIH-CHIH WANG1,2, HENG-HAO CHANG3 & LI-YEH FU1
Institute of Health and Welfare Policy, National Yang-Ming University, Taipei, Taiwan, 2Department of Education andResearch, Taipei City Hospital, Taipei, Taiwan, and 3Department of Sociology, National Taipei University, New Taipei,
TaiwanDownloaded by [Jyvaskylan Yliopisto] at 20:08 25 September 2014

1

Abstract
Background Earlier research shows that nonemployed mothers of children with intellectual disability (ID) have lower
wellbeing than employed mothers. This study explored why and to what extent these mothers did not participate in thelabour market.
Method An in-depth interview was employed, and 18 working-age and nonemployed mothers in Taiwan who had an adultchild with ID were interviewed in their homes between July 2009 and May 2010.
Results The mothers left the labour market at different stages of the family life cycle due to a lack of formal/informal support forthe care needs of their young children, and the continuing intensive care needs of their child with ID. Mothers were ofﬁciallynonemployed; however, to meet their family’s ﬁnancial needs, they were hidden workers in practice.
Conclusions Policies are required that support these hidden female workers, who are also lifelong carers, by offering ﬁnancial
support and affordable social services.

Keywords: mother, hidden worker, care, employment, intellectual disability, Taiwan

Introduction
The conﬂict between paid work and family responsibilities and the effects of this conﬂict on women’s
lives have become a great concern over the last
three decades. Difﬁculties encountered by women
who try to balance paid work and childcare havebeen addressed in many Western studies (Beaujot& Liu, 2005; Biernat & Wortman, 1991; Crouter,
1984) and Asian studies (Aryee, Luk, Leung, & Lo,
1999; Lu, Gilmour, Kao, & Huang, 2006). The ﬁndings of these studies have consistently indicated that,compared with men, women continue to have alarger share of household and unpaid childcare
responsibilities, even when employed (Aryee et al.,
1999; Bird & Fremont, 1991; Emslie & Hunt,2009; Ross, 1987). Motherhood is a social construct
and the expectations of a “good mother” or “intensive mothering” are shaped by both culture andhistory (Gerhard, 2005; Hays, 1996). However,these studies have usually focused only on working
women and on care for young children without
disability.
In comparison with other mothers, mothers of children with disability are less likely to be gainfully
employed or involved in full-time work (Freedman,
Litchﬁeld, & Warﬁeld, 1995; Lewis, Kagan, &Heaton, 2000); these mothers have considerable difﬁculties associated with employment due to the caredemands of their child with disability and inadequate
childcare support (Brandon, 2007; Porterﬁeld, 2002;
Shearn & Todd, 2000). According to intellectual disability (ID) studies, mothers of children with ID are
more affected than fathers concerning their wellbeing
and participation in paid work (Olsson & Hwang,2006). In addition, wellbeing is lower among nonemployed mothers of children with ID than among†
This manuscript was accepted under the Editorship of Ian Dempsey.
Correspondence: Yueh-Ching Chou, Institute of Health and Welfare Policy, National Yang-Ming University, N. 155, Li-Nong St., Sec.2, Peitou, Taipei, 11200
Taiwan. E-mail: choucyc@ym.edu.tw© 2014 Australasian Society for Intellectual Disability, Inc.

2

Y.-C. Chou et al.

employed mothers (Bourke-Taylor, Howie, & Law,
2011; Chou, Pu, Kröger, & Fu, 2010; Eisenhower& Blacher, 2006). The present study focuses on theconditions of Taiwanese nonemployed mothers
who have an adult child with ID who was over 20
years old.

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Employment patterns of married women
Sørensen (1983) categorised the employment patterns of women after marriage as conventional, interrupted, double track, and unstable based on whether
women leave and/or return to the labour force after
marriage or giving birth to a child.1 A Taiwanesestudy applied Sørensen’s patterns to women aged
40–49 and synthesised four patterns of women’s
employment from their ﬁndings: conventional, interrupted, continued (work until retirement), andothers (quit due to health or market reasons; Li &Yang, 2004). Government statistics show that marriage and childbirth markedly impact employment
for Taiwanese women during the family life cycle;
for example, 26% and 16% of women left thelabour force after marriage or childbirth, respectively,
and roughly 50% returned to the workforce (Directorate-General of Budget, Accounting and Statistics,
Executive Yuan, Taiwan, 2013). After becoming amother, and in order to meet their care responsibilities and their family’s ﬁnancial needs, some Taiwanese women become involved in informal work
such as being a babysitter, a market peddler, or
working at home in outsourcing. Such employment
is paid, but is not recognised by the government
and is not covered by labour and employment insurance (Chang, 2011). However, all these studies or
statistical data usually refer to mothers whose children are without disability.
Work and care among mothers of children withdisability in Taiwan
In Taiwan, care for family members (e.g., children,
older adults, and persons with disability) has been afamily responsibility, because most of those in needof care live with their families. For example, 93% of
people with ID in Taiwan live with their family(Department of Statistics, Ministry of Interior,Taiwan, 2009). Moreover, informal and unpaid
family caregivers who provide regular care or help
for family members with ID are typically female,and generally mothers (Chou, Lin, Chang, & Schalock, 2007). Additionally, the primary family caregiver must not only provide long-term care but also
needs to cope with the social difﬁculties that result
from people’s prejudices, together with a feeling of

being devalued by society (Chou & Palley, 1998;
Chou, Pu, Lee, Lin, & Kröger, 2009). A previous
survey study (Chou, Chiao, & Fu, 2011) found thatthese family caregivers of adult children with ID
who provided highly demanding care were more
likely to have a lower level of health status and alower quality of life than their counterparts whose
adult family members had less severe disability.
In Chinese society, traditional Confucian values
often still prescribe a sharp gender division oflabour in which men are primarily concerned withbreadwinning and women, even when in paid
employment, are concerned with homemaker andchildcare roles (Aryee et al., 1999; Lu et al., 2006).
In Taiwan, which is a highly urbanised country, theemployment rate among married women (15–64
years) in the labour market is still less than that inmany Western countries, even though this rate has
increased over the last two decades from 46.9% in
1990 to 54.5% in 2010 (Directorate-General of
Budget, Accounting and Statistics, Executive Yuan,
Taiwan, 2013). However, Taiwanese government
policies supporting reconciliation of paid work andcare among the mothers of adult children with disability are not institutionalised or recognised. For
example, only since 2009 has paid parental leave,
paid at a rate of 60% of one’s salary for 6 months
for both the father and mother, been available toparents whose child is aged ≤ 3. However, ﬂexible
working hours and part-time work by informal caregivers are not covered by Taiwanese public policy.
Formal support is only provided to people with disability or to older adults in low-income families.
When using social services, such as homecare, daycare, respite, or residential care, the family must
pay or co-pay for services.
This qualitative study explored the experiences ofnonemployed mothers caring full time for their adultchildren with ID. The research questions of thisstudy were: (1) What were the reasons for thesemothers to leave the labour market and when did
it happen? (2) Why had these mothers not returnedto the formal labour market? (3) What were theemployment patterns of these mothers in comparison with the mothers in previous studies (Sørensen,
1983; Li & Yang, 2004)? This study is the ﬁrst to
examine the issues associated with working-age
mothers of adults with ID who have intensive careneeds, and it focuses on their perceptions of theircare responsibilities and of their reasons to leave
the labour market. This information can be used
to identify the needs of mothers who are nonemployed and also life-long carers, especially thoseneeds that are not being met by their social
networks.

Mothers who are hidden workers
Methods
To investigate a participant’s experience of a particular phenomenon, this study used in-depth interviews
and an interview guide for data collection.

3

were informed that they could withdraw from participation at any time and that conﬁdentiality was
assured. Ethical approval for this study was obtained
from the Institutional Review Board of the National
Yang-Ming University, Taipei, Taiwan (codenumber: 990008).

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Participants
According to Taiwan’s Central Government (Directorate-General of Budget, Accounting and Statistics,
Executive Yuan, Taiwan, 2011), an individual is notin the labour force when that individual has no job or
is not looking for a job because of school, household
responsibilities, is too old, or has a disability. In orderto focus on the nonemployed mothers who are ofworking age and have had intensive caregiving
responsibilities for their children already for years,
the enrolment criteria for this study were as follows:(1) full-time mother-carers, aged < 65, of an adultwith ID who self-reported that they were nonemployed; and (2) mothers caring for an adult child
who had signiﬁcant care needs, had been diagnosed
with severe or profound ID,2 aged ≥ 18, and lived
with his or her family.
Participants were ﬁrst recruited via an ID survey ofhealth and social care issues conducted in Hsinchu
City, Taiwan, during 2007–2008. All 33 nonemployed mothers were called by telephone andinvited to take part in this study. Twelve agreed andcompleted the interviews. Six nonemployed
mothers were referred through a parental organisation and three day-care service centres located inother cities and counties in Taiwan. In total, 18
non-employed mothers who had an adult child withsevere or profound ID completed the semistructured
interviews at their homes between July 2009 and May
2010.
The 18 mothers were aged 38–64; 13 were
married, two were divorced, and three were
widows. Ten had completed primary school; threeand four had completed junior and senior highschool, respectively; one had completed college.
The age range of the adult children with ID was
19–44 years; 11 of the 18 children were male (seeTable 1).

Interview schedule
All interviews were conducted at the participants’
homes by one of the researchers from the researchteam. Interviews lasted between 50 and 120
minutes. All interviews were recorded and latertranscribed.
The interview guide,3 with 25 open-ended questions, was developed by the ﬁrst author. Questions
were derived from the international Working Carers– Caring Workers (WoCaWo) project but wereadapted to the conditions of Taiwan. The guidecovered seven areas related to the participants’ careand work responsibilities: care work (e.g., “Are you
the primary carer of your child with disability?”), previous experiences of employment (e.g., “Can you
describe the characteristics of your previous paid
work?”), the reasons for and timing of leaving thelabour force (e.g., “Can you describe the reasons
and when you quit your previous paid work?”),whether the participant’s care responsibilities andpaid work were in conﬂict (e.g., “Did your previous
paid work inﬂuence your caring for your child withdisability?”), care/work identity (e.g., “What do you
think about the role of taking care of your childwith disability?”), social culture (e.g., “What do you
think about our society and culture, supporting
women to carry on the role of working women?”),and formal service use (e.g., “Has your child with disability used any formal services or welfare beneﬁts
from the government?”). Characteristic data of
mothers and their adult child were also collected:(1) adult child’s age, degree of disability as documented by the government, activities of daily living(ADL), instrumental activities of daily living(IADL), and service usage; and (2) mother’s age,education level, marital status, family income, andnumber of family members living in the same household (as shown in Table 1).

Ethical considerations
Interviewees were ﬁrst contacted by telephone. Only
participants who accepted the telephone invitation
were enrolled into the study. Before each interview,
both written and verbal informed consent was
obtained from each participant. Each consent form
was signed by the principal researcher, the participant, and an interviewer as a witness. All participants

Data analysis
Transcripts were analysed via interpretative phenomenological analysis (Smith, Flowers, & Larkin, 2009).
First, the principal researcher conducted an unfocused overview of the interview texts to identify signiﬁcant words, phrases, or paragraphs related toissues explored in this study. The principal researcher

4

Y.-C. Chou et al.

Table 1. Characteristics of the 18 nonemployed mothers and their adult children with ID

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Mother
Namea

Age
range

Maritalstatus

Sue

60–64

Widow

PrimaryLu

50–55

MarriedJunior
high

Lin

46–50

Divorced

Primary

Ting
Dai

46–50
56–60

MarriedMarriedPrimary
Primary

Yin

50–55

MarriedPrimary

Wu

56–60

MarriedPrimary

Ku

50–55

Married

Shei

60–65

MarriedSeniorhighPrimary

Fun

40–45

Married

Jin

36–40

Married

Chen

50–55

MarriedSeniorhigh
JuniorhighPrimary

Yuen

50–55

MarriedCollege

Zou

46–50

Divorced

Shi

56–60

Jen

Education

Adult child with ID
Age/genderDiagnosed level of
IDb

Formal serviceuse

Was an outsourced home worker

44/M

SevereWas an outsourced home worker,
helped mother-in-law at a market, &is involved in casual work
Was an outsourced home worker & ran
a cafeteria or restaurant
Was an outsourced home worker
Was an outsourced home worker; is ananny to grandchildren
Was an outsourced home worker; is a
nanny
Was an outsourced home worker; is ananny for others and her
grandchildren
Works casually in a department store

32/M

ProfoundHad used day
care but notanymoreRespite

20/M

SevereRespite

27/F
32/M

Not used
Respite30/F

SevereProfound (withDown syndrome)
SevereNot used

35/M

SevereNot used

27/M

ProfoundNot used

Paid work history after marriage

Was an outsourced home worker &helped husband paint walls
Had tried to work but did not last long

33/F

ProfoundNot used

20/F

SevereNot used

Had worked in a factory

21/M

SevereNot used

Had worked in a restaurant in theevening; is a nanny for her
grandchildren
Had worked at a grocery store

28/F

Severe (nonverbal,
hearing disability)

19/M

PrimaryWorked casually; helps son (with ID
and a cleaner) do cleaning work

21/M

Widow

Primary

Was an outsourced home worker

32/F

60–65

Widow

Was an outsourced home worker

30/F

Shao

46–50

MarriedHelps the family business

27/M

Ju

50–55

MarriedSeniorhigh
Seniorhigh
Juniorhigh

Was self-employed

32/M

Profound (withepilepsy)
Severe (with hearing& verbaldisability)
Profound (withepilepsy)
Severe (with Down
syndrome)
Severe (with Down
syndrome)
Severe (with Down
syndrome)

Had used day
care but notanymoreDay careNot used

Day careDay care &respiteDay careHad used day
care but notanymoreaPseudonyms
The recipients of welfare disability beneﬁts in Taiwan must go through ofﬁcial registration based on their medical diagnosis, which isassessed by doctors based on the individual’s IQ score and neurological examination results, mental health conditions, self-care ability,communication skills, and maladaptive behaviour.
bthen reviewed the texts to identify an initial set ofthemes. Successive readings continued and themes
identiﬁed in successive transcripts were retained.
Once all three research team members had completed an initial independent analysis, ﬁndings werecombined for comparison and analysis. Themes
were retained only when the research team achievedconsensus. This process resulted in a condensed listof themes. These themes were then grouped into

closely related wider themes under appropriate
headings.
Results
From the analysis of the data, four main themes
emerged: moving from the formal to informal labour
market, employment patterns, hidden paid work,
and why mothers did not return to the labour market.

Mothers who are hidden workers

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Moving from the formal to the informal labour market
Similar to the study by Li and Yang (2004), almost all
mothers were employed before marriage. Some
(33.3%) mothers left the labour force after getting
married or giving birth to their ﬁrst child. Only
these six mothers can be deﬁned as having the conventional employment pattern based on Sørensen’s(1983) deﬁnition. Seven mothers (38.9%) left when
their child with ID had intensive and long-termcare needs. Furthermore, based on the work by
Sørensen (1983) and Li and Yang (2004), theremaining ﬁve (27.8%) mothers were classiﬁed as
showing the unstable pattern (e.g., Fun and Jin;
Sørensen, 1983), continued pattern (i.e., quit until
retired; e.g., Ju; Li & Yang, 2004) or other patterns(i.e., quit due to health or market reasons; e.g., Lin
and Yuen). Most mothers (83.3%) had been involvedin the informal labour market after leaving the formal
labour market. That is, they were not employedoutside the home and became undocumented
workers.
Becoming an outsourced home worker. Ten mothers
were outsourced home workers; that is, they
worked at home after they quit their outside job.
The 1972 “Xiao-Kang Plan” (help poor families in
Taiwan) and the living-room-is-the-factory policy
during the 1970s and 1980s increased family
income to meet family ﬁnancial needs. Working at
home became a way for housewives to join in thelabour market (Shieh, 1992). As a mother said, “I
could work at home. I was able to take care of myfamily and kids” (Sue). And another said, “Whenhe [son with ID] was sick, I was working at home
all day and I needed to take care of my kids. I
worked [i.e., outsourced home work] as much as I
could” (Lin). Housework, caregiving work, and outsourced home work were combined for thesemothers.
Becoming a child-minder at home or having casualwork. Some mothers worked as nannies for neighbours (e.g., Yin and Wu) or had casual work near
their homes (e.g., cooking for wedding banquets,
working as substitute clerks at department stores, ordelivering ﬂyers; e.g., Lu, Ku, Zou, and Shi). In
addition to looking after a child with ID, somemothers were also nannies for their grandchildren
at home (e.g.. Dai, Wu, and Chen), helping theirdaughters-in-law, who were gainfully employed.
Helping the family’s business without pay. Somemothers helped their husband, son, mother-in-law,or husband’s family (e.g., by painting walls, cleaning,selling vegetables at markets, or cooking for workers).
A mother who prepared meals for workers in thefamily’s business mentioned that she quit work5

when she became engaged, as her mother-in-law
had requested (Shao). Her husband’s family was anextended family (more than 20 family members
living together) who were running a business: “I
was very busy cooking, buying food, and doing
laundry by hand from morning to evening.”
Employment patterns: when and why mothers quit
outside employment
According to the interview results, mothers left theformal labour market or outside employment at
different life stages—when married, when pregnant,when giving birth to a ﬁrst child, when giving birth
to a child with ID, when having a grandchild tocare for, when a company shut down, or when
having health problems.
Mothers quitting employment after the ﬁrst child wasborn. Most mothers quit their employment when
they gave birth to their ﬁrst child (with or without adisability); the key reason was lack of childcare
support. As discussed previously, paid parental
leave has been available only since 2009 and takeup rates for leave have been extremely low (e.g.,
5.9% in 2011 and 7.7% in 2012; Council of Labor
Affairs, Executive Yuan, Taiwan, 2011).
During my second year of marriage, I gave a birth tomy eldest child, and I quit my job. My daughter with
ID was my fourth child. I did not have a mother-inlaw to help, and childcare was too expensive … I
didn’t want to use my salary to pay for childcare, so
I quit work to care for my child. (Shei)

Demanding care needs. Some mothers left outside
employment when they had a child with ID (e.g.,
Ting and Wu) or because caring for a child with ID
was extremely difﬁcult (e.g., Ku, Fun, Jin, and Jen):
He [son with ID] was very difﬁcult to care for. …
Both my mother and mother-in-law were unable tocare for him. … I am the mother, and I know what
he needs … My husband needed to sleep and work,
so I quit work. (Ku)
Initially, my mother helped me care for her [daughterwith ID]. I was working and I needed to check on her
during my lunch hour every day. … At that time, mymother was not so well. … It was difﬁcult to ﬁnd achild-minder, so I quit my job. (Jen)

Expensive day care without an end. Most mothers
stated that (co-)payment for day care for their childwith ID was a signiﬁcant ﬁnancial burden; thus,
some did not use this service due to its high cost(e.g., Sue, Ting, Yin, Ku, Shei, Fun, and Chen).
The co-payment policy is based on family income.

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6

Y.-C. Chou et al.

One mother, Shei, mentioned that day care for her
son with ID was more expensive than sending achild to university. Another mother, Ku, indicatedthat her child with ID had been using day care formore than 20 years, thus the family had beenrequired to pay a user fee for 20 years and this ﬁnancial burden would continue. Low service use meansthat the state does not share care responsibilities
with families. In these circumstances, informalsocial networks become necessary for working
mothers. The ﬁndings suggested that daughters-inlaw, and probably daughters as well, expect that theolder generation will help them care for their children, not the state.
No husband and/or no family support. As institutions
are shaped by norms and values at national and local
levels, so are interpersonal relations between men
and women, and within families and households(Crompton, Lewis, & Lyonett, 2007). Somemothers mentioned that they wanted to workoutside the home, but their husband did notsupport this idea (e.g., Sue and Jin) or theirhusband was unable to care for their child with ID(e.g., Yin and Ku). For example, one motherstated, “My husband says bathing a child is
women’s work” (Jin). Another stated that “Myhusband says taking good care of my son with ID
comes ﬁrst and work comes second” (Yuen). Somemothers mentioned that their original family and husband’s family did not agree to a woman working
instead of caring for family/children (Ku and Chen).
Quit work to care for grandchildren. “I quit work at
the restaurant two years ago to take care of my grandchild because my son wants me to help so his wife canwork” (Chen). This mother had worked evenings at arestaurant (7.00 pm to 3.00 am), as her family (e.g.,husband and siblings of the child with ID) helpedcare for her daughter with ID. She was taking careof her grandchildren when interviewed.
Hidden paid work
Most mothers in this study moved from the formal
labour market to the informal labour market andhad many types of work to help meet their ﬁnancial
obligations, such as rent payments, purchases ofnappies and milk, day-care fees for their children
with ID. Regardless of whether the mothers had
paid work at home (e.g., as a child-minder or outsourced home worker) or unpaid family work (e.g.,
self-employed work), they did not identify themselves
as employed or as one of the family earners. Compared with studies by Aryee et al. (1999) and Lu
et al. (2006), which determined that employed
Chinese/Taiwanese women were concerned with

their childcare roles, most mothers in this study
were not formally employed; they were working tohelp their family ﬁnancially, or worked at home
without pay. All were caregivers and most of them
became hidden paid or unpaid workers.
Why mothers did not return to the labour market
These mothers did not return to the labour force formultiple reasons, including individual perceptions(e.g., motherhood identity, no support from theirhusbands, having no parents or parents-in-law tohelp) and social factors (e.g., childcare too expensive,
special care needs of their child with ID, expensive
long-term day care for their child with ID, day-caretimetable did not ﬁt work hours, labour market
favoured young people and people with high levelsof education).
Taking care of the child(ren) with ID was all thesemothers’ ﬁrst priority. Some mothers (e.g., Lu, Jin,
Shi, and Jen) believed that children who are cared
for by their mothers have better quality of care. The
mothers did not complain about this long-term care
work; they believed that caring for children was not
difﬁcult (Sue, Lin, Dai, and Yuen), that it was their
responsibility (e.g., Lu, Ting, Yin, and Chen), and,as a biological parent to the child with ID, it was
their fate (e.g., Lin, Dai, and Jin). Some mothers
also perceived they were the main pillar of thefamily and their children and family counted onthem:
He [son with ID] is the ﬁrst priority in my life. … I
have no position to be pessimistic, because myfamily needs me. I am the only person of the family
carrying on this care work. You all [husband andother children without a disability] can choose toleave the care work to me. Because I am themother, I can do this care work better. (Ku)
I am just like an iron chain to have my family tied
together. … it is my responsibility to take care of mychildren and to maintain intimacy between all thefamily members. (Lu)The majority of mothers in our study had completed
only primary school education and their husbands
were working as drivers, carpenters, machine operators, clerks, or were veterans. The mothers’ previous
jobs included working in a cinema, as a waitress,
factory work, as a typist, or as a salesperson. They
had left the labour market decades ago due to caregiving for their adult child with ID and were now
middle aged. The women were not as physicallyrobust as they once were (e.g., Chen and Yuen),
and searching for a job was not as easy for them as
it might be for young people (e.g., Lu, Dai, Chen,

Mothers who are hidden workers
and Yuen), particularly if these mothers did nothave a professional qualiﬁcation and work experience(e.g., Ting):

Downloaded by [Jyvaskylan Yliopisto] at 20:08 25 September 2014Society does not support a person like me, not young
anymore, to be employed. (Yuen)
Currently, labour market is getting worse and worse,and now many people are unemployed, … for me it iseven more difﬁcult. (Ting)

Furthermore, some mothers mentioned that theywould return to the workplace if they could taketheir child with ID to work. For example, twomothers planned to purchase a small restaurant andsell breakfast foods and other simple foods. Theirchildren with ID would be able to work and havesocial contact with people. Thus, these mothers
would combine work and care in the same location.
Moreover, similar to the study by Hays (1996), thewomen in this study were mostly working class, andthe only reason they were working was to ensure
the economic survival of their family. The ﬁndings
obtained by this study echoed ﬁndings from Kahu
and Morgan’s study (2007) and a Taiwanese survey(Chou et al., 2010) that mothers of children with disability with a low education level receive little informal support. Unlike the Western and Taiwanesewomen in previous studies, who did not have achild with a disability (Li & Yang, 2004; Sørensen,1983), the mothers in this study had little chance ofreturning to the formal labour market as they
lacked the money to pay for long-term childcare.

Discussion
The results indicated that having a child with ID had
a marked impact on the employment patterns ofmothers throughout the family life cycle, and thatthese patterns were more complex than those of
mothers not having a child with a disability (Li &Yang, 2004; Sørensen, 1983). First, these mothers
had a high likelihood of being stuck in a conventional
pattern once they left the labour market. For
example, some mothers left the labour market anddid not return because of the traditional roles andexpectations of their families and society, as shownin the ﬁndings of DeVault (1991), Hays (1996),
and Traustadottir (1991). Additionally, many had achild requiring long-term care and lacked support
from informal and formal networks (Bourke-Taylor
et al., 2011; Chou et al., 2010; Shearn & Todd,
2000).
Second, these mothers stated that they were nonemployed, but most had acquired or still had unreported paid or unpaid employment. Thus, these7

women were juggling both work and home, and combined paid/unpaid work with unpaid care/housework. Rather than reconciling the two roles of careand work in two locations (home or outside thehome), these mothers were caring for their children
and family as well as being one of the family
earners. Furthermore, these married women had
moved from the formal labour market to the informal
labour market, and when they worked and what they
contributed was part of Taiwan’s undergroundeconomy and not reported as formal employment.
However, their pay was not recognised by the government, so they were not covered by labour andemployment insurance. This study found thatinstead of using social services most of the adult children with ID stayed at home and were cared for by
the mothers. Thus, these mothers and their children
with ID were not protected from social isolation andpoverty, and were more vulnerable than employed
mothers in the formal labour market (BourkeTaylor et al., 2011; Chou et al., 2010; Eisenhower& Blacher, 2006).
Additionally, mothers in this study were theprimary caregivers of their children with ID, andthis caregiving and unreported work would continue.
No employment pattern, or an unstable employment
pattern, best describes the experience of the mothersin this study. Some of their employment experiencemight be classiﬁed as conventional by Sørensen(1983) and Li and Yang (2004) because themothers left the labour force when they married or
had their ﬁrst child. However, beyond these descriptions, another employment pattern of these mothers
should be recognised. This additional pattern
included a move from the formal to the informal
labour market or a move from the public workplace
to the private sphere. Moreover, these mothers
found it hard to return to the labour market once
their child with disability was born because they
lacked informal and formal support to meet thelong-term care needs of their child. This suggeststhat the interrupted pattern and double-trackpattern for mothers of children without a disability
does not apply to mothers of children with disability.
Furthermore, these mothers had a high likelihoodof leaving the labour market, not only at childbirth,
but also at other life-cycle stages. For example, in
addition to being married and giving birth to theirﬁrst child, the intensive and continuing care needsof their child with disability increased the possibilityof these mothers moving out of the labour force.
Having a child with ID was an indirect reason why
mothers left the labour market; other reasons werethe lifelong special care needs of their child with disability, and unaffordable long-term day-care services.

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8

Y.-C. Chou et al.

It was notable that the employment patterns of thesemothers differed from those of mothers of children
without disability, as childcare is only intensive
before a child goes to school.
In Taiwan as in many societies, women’s status ascarers is often important to them because caring for
one’s children or one’s older parents is often identiﬁed to be a duty (Lewis & Campbell, 2007). The
ﬁndings of our study show that the mothers did notrecognise their “hidden work” (i.e., their undocumented paid work) as employment, and they only
identiﬁed themselves as a house woman rather thana breadwinner of the family. In contrast to
Hughes’s (2002) argument, these mothers were notstruggling for gender equality or striving to pursue
personal careers in paid employment; instead, they
were employed, and became nonemployed or
hidden paid workers all for family reasons. Further,
the mothers used their personal beliefs (e.g., fate,
identity) as the coping strategy to maintain the traditional female roles they pursued. They were not
only the cultural carers (DeVault, 1991; Hays,
1996), but were also the hidden breadwinners of
the family.
In Taiwan, the welfare policies (including disability and childcare policies) and labour market do not
help women to combine work and family care. Childcare for mothers with a child with ID lasts for
decades; thus, both welfare and labour policies areneeded that support these mother-caregivers, suchthat work and care responsibilities are compatible.
First, these mothers need affordable day care.
Second, seamless community-based services are
crucial to meet the considerable support needs ofchildren with ID. Moreover, intervention programs
that help these mothers remain in employment or
return to the labour market must meet the needs ofthe mothers and their child with ID. For example,
whether mothers can combine both care and workin the same location is important to help mothers
re-enter the labour market. For mothers working in
the informal labour market, interventions should
focus on how to help them avoid social isolationand how to be included in social insurance schemes.
In conclusion, 18 nonemployed mothers of 18
adult children with ID were interviewed to determine
why they chose to leave the labour market. In contrast
to the mothers of children without a disability (Li &Yang, 2004; Sørensen, 1983), these mothers still
took on the role of the family breadwinner, and justmoved from the formal labour market to the informal
one and became hidden paid or unpaid workers. To
support the mothers of children with disability, andto reconcile the conﬂict between care and work,formal care resources must be made available, notonly for employed mothers but also (and in particular) for those mothers who report that they are not
employed.
Despite its contributions, this study has certain
limitations. First, the results were based on single
interviews and a cross-sectional sample of participants. To understand the care and work patterns ofthese mothers in different life-cycle phases, and theinteractions between mothers and the social contexts
in which they live, life history narrative research isneeded. Second, the study results are limited tomothers with a working class background, who hada child with severe or profound ID, and who wererecruited voluntarily to the study. However, thisstudy is the ﬁrst to focus on the experiences related
to caregiving and the work of mothers who have left
the formal labour market. From the perspective of
ID research, this study broadens the discussion ofwork/family reconciliation and patterns/reasons forleaving formal employment among mothers who
have cared for children with ID for over two decades.
Acknowledgements
We would like to thank the participants who gave up
their time and took part in our interviews. We are also
grateful to two reviewers and Teppo Kröger for
helpful comments.
Funding
This paper draws on data collected for a project
funded by the National Science Council in Taiwan(NSC98-2621-M-010-001) and also in cooperation
with the international WoCaWo project (https://www.jyu.ﬁ/ytk/laitokset/yﬁ/en/research/projects/woc
awo).
Conﬂicts of interest
No conﬂicts of interest have been declared.
Notes
1. Conventional: Women who had left the labour
force upon marriage or the birth of their ﬁrst
child and who had not returned to the labour
force. Interrupted: Women who had left thelabour force upon marriage or the birth of theirﬁrst child and who had returned after the lastchild was born. Double track: women who
returned to the labour force before the lastchild had been born. Unstable: women who had
left and entered the labour force several times(Sørensen, 1983, p. 313).

Mothers who are hidden workers
2.

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3.

In Taiwan, disability welfare beneﬁts are only
available to those who are diagnosed with a disability, have the approval of the local government, and have been provided with a disability
certiﬁcate or handbook. The level of disability
is categorised into four levels, namely, mild,moderate, severe, and profound, which are
based on the individual’s medical diagnosis.
The diagnosis of ID is based on the individual’s
IQ score and her or his neurological examination
results, mental health situation, self-care ability,communication
skills,andmaladaptive
behaviour.
The interview guide is available upon requestfrom the corresponding author.

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