Published for the British Institute of Learning Disabilities

Journal of Applied Research in Intellectual Disabilities 2012

Making Work Fit Care: Reconciliation Strategies
Used by Working Mothers of Adaults withIntellectual Disabilities
Yueh-Ching Chou*, Li-yeh Fu* and Heng-Hao Chang†*Institute of Health and Welfare Policy, National Yang-Ming University, Taipei, Taiwan; †Department of Sociology, National Taipei University,
Taipei, Taiwan

Accepted for publication 26 October 2012

Background This study explored the experiences ofworking mothers with an adult child with intellectual
disabilities to understand how they reconcile paid workand care responsibilities.
Methods Fifteen working mothers in Taiwan with anadult child with intellectual disabilities wereinterviewed, and an interpretative phenomenologicalapproach was adopted for data collection and analysis.
Results All included mothers prioritized their caregivingrole over paid work. The strategies used by thesemothers to make paid work fit with caregiving included
having strong social networks and informal support for

Introduction
Despite the considerable research focused on theintersection of employment and caregiving among infamily carers of children, the reconciliation of paid workand care responsibilities of mothers having adultchildren with intellectual disabilities has seldom beenaddressed. The stress and caregiving burdens
experienced by informal and unpaid carers of persons
with intellectual disabilities have been extensively
studied in recent decades (Seltzer & Krauss 1989; Heller
et al. 1997a,b; Maes et al. 2003; Essex & Hong 2005).
‘Care’ also has unique meanings for mothers withchildren with intellectual disabilities (Traustadottir1991); some mothers have even developed coping
strategies to negotiate their care responsibilities in a
family (Chang 2009). Having a child with disabilities
profoundly impacts employment participation among
women (Traustadottir 1991; Thyen et al. 1999; Shearn &Todd 2000; Kuhlthau & Perrin 2001; Parish et al. 2004;
Olsson & Hwang 2006); some carers might leave their
paid work because they lack adequate support in caring© 2012 Blackwell Publishing Ltd

their care work, use of formal services, personal
religious beliefs and positive attitudes towards care, as
well as having flexible working hours due to selfemployment, good relations with employers, working
positions and work locations.
Conclusions Formal systems, which include both welfare
and labour policies, need to be responsive to andinvolved in supporting these working mothers,
especially those who lack good personal networks.
Keywords: caregiving, intellectual disability,
paid work, work–care reconciliation

mother,for their children in the long term (Todd & Shearn 1996;
Thyen et al. 1999; Shearn & Todd 2000; Einam &Cuskelly 2002; Parish et al. 2004; George et al. 2008).
However, both Western and Taiwanese studies ofworking mother carers of family members withintellectual disabilities are limited, especially withrespect to their strategies to reconcile their paid workand family care responsibilities.

The Social Context of Taiwan
According to Department of Statistics, Ministry ofInterior, Taiwan (2011) most individuals withintellectual disabilities (93%) live with their families
who take care of them; 57% of primary family carers are
the mothers of individuals with intellectual disabilities.
Social services, including cash payments, for individuals
with disabilities are limited (Fu et al. 2000; Chou et al.
2008). For instance, subsidies for a family with memberswith disabilities are available only for low-income
families, which the government determines based on ameans test. To be eligible, a family must rate either
10.1111/jar.12005

2 Journal of Applied Research in Intellectual Disabilities‘poor’ or ‘near poor’. In addition to family subsidies,available family support services include home care,
respite, day care and day services (vocational training,
sheltered employment, supportive services); co-payment
is required for such services and is based on the level offamily income and the severity of the participant’s
disabilities. However, those individuals receiving family
subsidies are ineligible for other social services,
including residential services and the above family
support services. Under such a social welfare policy of‘less eligibility’, previous Taiwanese studies (Chou et al.
2008, 2010) have pointed out that families having afamily member with intellectual disabilities receive
extremely limited support from formal systems.
In Taiwan, governmental policies aimed at reconciling
paid work and family caregiving are not firmly
institutionalized. Since 2002, the amended Act ofGender Equality for Employment has allowed
employees to take up to 7 days per year of unpaid leave
to care for family members with disabilities. Later, theamended Employment Insurance Act of 2009 establisheda government subsidy of 60% of the salary of workers
who take parental leave for a maximum of 6 months tocare for children under 3, but this was not extended toparents of adult children with disabilities, whose leaveremains unpaid. Consequently, reconciliation between
paid work and family caregiving is still largely viewed
as a family responsibility in which employers are notobligated, despite public awareness of this social issue.
Based on the nationwide data in 2010, the overall
employment rate was 49% for women and 68% for men
between 15 and 65 years old. However, Taiwan’s
statistics regarding maternal employment for children
with intellectual disabilities is lacking.

ethnicity, sexual orientation and age cohort experiences.
From a social constructionism perspective, twodominant discourses have been put forward: the‘intensive mother’ who selflessly expends her time andenergy in nurturing her child and the ‘successful
woman’ who individually competes in the public realm
in pursuit of challenging yet satisfying career (Hays
1996; Hughes 2002). Kahu & Morgan (2007) additionallyargue that women’s lives are influenced by theprevailing local culture and policies.
The following ‘demand hypothesis’ was proposed by
Lippe et al. (2003): as more time is demanded by the labour
market, less time is available for care; on the other hand, thegreater the amount of care needed at home, the greater timethat will be invested in the family. From a resource
perspective, social support can act as a buffer between
workplace responsibilities and the caregiving role to help
mitigate these adverse effects (Barnett & Hyde 2001).
Although the interface between work and family hasreceived considerable attention, the reconciliation
between caregiving and paid work has seldom been
explored for mothers of adult children with intellectual
disabilities. Therefore, this qualitative study aims to
explore the paid work and caregiving conditions ofworking mothers in Taiwan with respect to how theyreconcile their paid work with caregiving for an adultchild with intellectual disabilities. This study is uniquein its emphasis on discussion of the issue from theworking mothers’ own perspectives. Results of thisstudy provide a valuable reference for efforts to identify
the unmet needs of lifelong female carers in relation to
the state, employers and social networks.

Methods

Work–Family Interface

Participants

From a psychological perspective, women’s caregiving
is motivated by their emotional attachment to the carereceivers, as well as by their capacity for self-sacrificeand sense of altruism (e.g. sacrifices herself to be a‘good daughter’, ‘good mother’ and ‘good wife’), andthat caring is central to their identity (Hooyman &Gonyea 1995; Pascall 1997). Feminists argue thatcaregiving is a social construction in which women
identify caregiving as an essential part of womanhood,as passed down from generation to generation throughmothering (Graham 1983; Dalley 1988; Hooyman &Gonyea 1995). Collins (1990) indicated, after listening to
women’s experiences, that women live in multiple
realities of caregiving that are shaped by class, race,

For the purposes of this study, the preliminary criteria
for study participants invited to interview were initially:(i) mothers younger than 65 years old who worked for
30 hours or longer each week and (ii) the adult family
member receiving care had significant intensive careneeds. In other words, the individual had severe
intellectual disabilities, was aged 18 years or older andlived with family without any residential care service.
First, the participants were recruited through a census
survey on health and social care issues in a city in
Taiwan (n = 796; for further detail, see Chou et al. 2010).
Second, the working mothers were recruited throughtwo parental organizations and 3 day care service
centres that were located in other cities and counties© 2012 Blackwell Publishing Ltd

Journal of Applied Research in Intellectual Disabilities

around Taiwan. In the end, 15 working mothers who
have an adult child with intellectual disabilities
completed our semi-structured interviews at theirhomes between October 2008 and May 2009.
The mothers ranged from 41 to 56 years old. Eleven
were married, two were divorced, one was separated, andone was widowed. Their educational levels ranged fromprimary school to college. Their adult children withintellectual disabilities ranged from 19 to 33 years old, and
8 of the 15 were female (Table 1 provides further details).

Research design
An attempt was made to explore the perceptions andexperiences of the working mothers by designing open-3

ended questionnaires to investigate the following areas:
paid work and caregiving conditions; the characteristics
of current and previous paid work; coping strategies ofmothers in reconciling paid work and care
responsibilities; support from family, friends, neighbours,
colleagues and employers in helping the mother balance
paid work and caregiving; and role of formal services inreconciling the difference between the two roles. To
control social desirability bias, the authors used both
direct and indirect questioning for sensitive issues.
The interviews were held one-on-one with the working
mothers, and the interviews’ duration ranged from 50 to
120 min. The interviews were undertaken by threeresearchers of this study in the participant’s home. The
principle investigator (PI) invited all researchers to have

Table 1 Characteristics of the 15 working mothers and their adult children with intellectual disabilities
Mothers

Adult children with intellectual disabilities

Age

Marital status

Education

Paid work/employment

Age andsex

Level of diagnosed intellectual
disabilities; ADL & IADL

Service use

#1

45+

Primary

Cleaner at shoe company

26/F

Severe; mild & profoundDay care#2

45

Married/separated
MarriedSenior high

20/M

45+

Divorced

Senior high

#4

50+

MarriedPrimary

27/F

#5

50+

Divorced

Primary

Self-employed hairdresser
at home
Cleaner at hotel

#6
#7
#8

45
55
50

MarriedMarriedMarriedJunior highJunior highSenior highSelf-employed tailor at home
Factory worker
Nurse

20/F
30/M
20/M

Profound; moderate & profound(mental health problems)Profound multiple disabilities;
profound/profound(bedridden; polio; epilepsy)
Profound; severe & profound(has been lost; hyperactive)
Severe; mild & profound(has been lost; violent behaviour)
Severe; mild & profound,
Severe; mild & profound
Severe; mild & profound (autism)

None

#3

Self-employed familybusiness – electric repair
Childminder at home

#9

45+

MarriedSenior high

20/F

#10
#11

45+
55+

MarriedMarriedSenior highCollege

Self-employed familybusiness – bill accounting
Governmental official
Principal of kindergarten

#12

55+

Widow

Senior high

#13

50

MarriedCollege#1450+

MarriedPrimary#15

55+

MarriedSenior high© 2012 Blackwell Publishing Ltd

Self-employed familybusiness – stock counselling
Administrator at day care
centre for children withspecial needs
Self-employed hairdresser
at homeGovernmental official

27/F

24/M

19/M
27/M

33/F
25/M

20/F

23/F

Moderate multiple disabilities;
moderate &profoundModerate; moderate & profoundProfound multiple disabilities(brain injury); moderate &profoundModerate; mild & severe (multiple
disabilities)
Profound; mild & profound(epilepsy; mental difficulties)
Moderate; mild & profound(challenging behaviour; hasbeen lost)Moderate; mild & profound(hyperactive)

Home care

RespiteDay careDay careDay careDay care &respiteDay careDay careDay careDay care &respiteDay careDay care &respiteDay care &respite4 Journal of Applied Research in Intellectual Disabilities

regular team meetings before and after interviews witheach participant. The interviews were in mandarin or
Taiwanese, depending on the participants’ spoken
language, and were tape recorded and later transcribed.
The authors mailed a copy of the typed transcripts andmade a phone call to each participant to check for errors or
misunderstandings. Except for making some changes tothe characteristic data related to the participants and theirfamilies, the mothers agreed with the typed transcripts
which were mailed to them for confirmation. Informed
consent was obtained from each participant before eachinterview; the research ethics board of National YangMing University in Taiwan approved the study.
This study aimed to explore these mothers’ personal
experience of a particular phenomenon (e.g. how theyreconciled paid work and care responsibility over theyears), by adopting an inductive approach to datacollection, in which the transcripts were analysed using
interpretative phenomenological analysis (Smith et al.
2009). Characteristic data of the mothers and their adultchildren with intellectual disabilities were collected,
such as adult children’s age, degree of disability as
documented by the government, ADL, IADL andservice use and mothers’ age, education, length ofcaregiving (number of years), whether they have a fullor part-time job, marital status, family income andnumber of family members living in the same
household.
The transcripts were analysed by the PI who first
noted significant words, phrases or paragraphs and thenidentified similarities/differences across interviews andemerging themes. The reading process was thenrepeated by another two co-researchers for the sameinterviews to check the validity of the analysis and theinterpretation of participants’ accounts. After all threeresearchers read each interview transcript, a teamdiscussion followed to confirm our agreement and any
differences observed in the themes listed. If all threeresearchers had different ideas of the themes listed, theauthors went back to re-read the transcripts before
another discussion. This list was then compared acrossinterviews, and predominant themes were extracted.
This resulted in a condensed list of themes, which werethen grouped into closely related themes underappropriate headings. Examples of the categories
developed included ‘self-employment’, ‘good relations
with employers’, ‘support from family members’ and‘spiritual support’. Then, the condensed list of themes
was coded with relevant headings as presented in the
results section such as ‘work flexibility’ (e.g. ‘selfemployment’, ‘good relations with employers’) or‘internal or external family and individual strengths’(e.g. ‘support from family’, ‘spiritual support’).

Findings
Mothers’ paid work – ‘I need the money to feed mykids’
Seven of the mothers were self-employed and working
at home. Three mothers (#2, #9, #12) owned familybusinesses and managed these businesses. Compared tothe mothers owning family businesses, the other selfemployed mothers, who were hairdressers (#4, #14), a
tailor (#6) and a childminder (#3), had both lower
educational levels and family incomes. These mothers
carried out their hairdressing and clothes making
businesses at home. The childminder took care of hersister’s grandchild at home from Monday to Friday.
Eight mothers were employed outside of the home.
Two each were employed as cleaners (#1, #5; at a shoe
store and hotel) and public employees (#10, #15); theothers were employed at a factory near home (#7), a day
care centre as an administrator for children with special
needs (#13), a hospital as a nurse (#8) and akindergarten as a principal (#11). Seven of them had
been employed before they were married and gave birth
to their children with intellectual disabilities.
Most of the mothers in the study mentioned that they
worked mainly to earn family income. Some of themothers’ income went for day care services or school
tuition for their children with intellectual disabilities.
Some mothers expressed the difficulty of theiremployment or employment situation, especially thoseolder mothers with a lower educational level (#4, #5).
For example, one mother said: ‘I need to work, I need tohave money for buying food’ (#4).
Based on their responses, the authors found that
although the mothers had been through difficult times
while looking after their adult children with intellectual
disabilities, the majority of them had never stopped paid
work. Almost all of the mothers replied that they needed
to have paid work for financial reasons, even though it
might conflict with their care role. Some of the mothers
were even the main breadwinners of their families.

Caregiving responsibilities of the mothers – ‘I almost
went insane’; ‘I was exhausted and did not have time torest’
All mothers in this study expressed difficulty in taking
care of their children with intellectual disabilities,© 2012 Blackwell Publishing Ltd

Journal of Applied Research in Intellectual Disabilities

especially when they were young. The mothers had
been exhausted, and some had even contemplatedsuicide (#2, #12, #13). Some mothers mentioned the mostdifficult time being when the children were young andwhen they were too busy to recognize how difficult
their life experiences were. One self-employed motherstated: When he (her son with ID) was 11 and 12 years old,he displayed very disturbed behaviors…which lasted for five to
six years; I nearly became hysterical and insane, and waseven hospitalized (#2).
One hairdresser mother (#4) found life extremely
hectic as she combined her work and caregiving duties;
varicose veins in her legs came from long hours ofstanding during work, and she explained a typical day
as follows: ‘last night I went to sleep around 3:00 am; …I
could not sleep well, I had to get up every two or three hours,…I do not have time to rest’. Other mothers were also
extremely busy caring for their children with intellectual
disabilities:
I needed to work early (at the family business), and I
also had to prepare meals… I had to take her back andforth to acupuncture therapy daily. I was young anddisoriented at that time. I did not know what ‘tired’
meant…except for when she was at the daycare center(#12).

…I occasionally envied people could enjoy theirbreakfast… Life was filled with so much tension… I evencontemplated suicide… The fact that I have survived is amiracle… (#13).

I have taken care of her for 20 years. I rarely venture
outside or to have any social connections outside thefamily members. …once she venture outside, she runs
away and suddenly becomes lost …I need a break. I am
exhausted (#14).
As discussed above, even when these mothers werethe main persons bringing in the family income, they
were still the main carers for their children withintellectual disabilities. Unlike the mothers ofyoung children or family carers of ageing parents or
spouses, caregiving experiences of the mothers having
a child with intellectual disabilities extend for longer
time periods. In particular, under the social welfare
policy of ‘less eligibility’, these mothers receive very
limited support from the formal systems mentioned
above.
© 2012 Blackwell Publishing Ltd

5

Choice between employment and caregiving – ‘Family ismore important’
When asked ‘If you had to choose between employment
and caring for your adult child with intellectual
disabilities, which one would you choose?’ the mothers
all prioritized their care responsibilities. Both selfemployed and employed mothers would relinquish
their employment if forced to choose. Typical comments
included: ‘Family is more important’ (#3); ‘Caring forchildren is natural’ (#6); ‘When looking after him (sonwith ID), I feel more of a sense of achievement thanwhen working’ (#7); and ‘A mother cannot be replaced’.
(#15).
Even the two mothers who were working full-time in
the family businesses and had strong personalities
preferred to be a housewife and a full-time mother:
Although I would have chosen to be a working motherearlier on, I have chosen to be a full time mother (#2).

If my economic circumstances were stable, I would focus
entirely on being a housewife… my family is still the top
priority. …I live not only for myself, but for those whoneed me (#9).
All of the mothers in this study replied they would
choose to carry on with only their caregiving role if
their family economic conditions allowed it. For thesemothers, influenced by traditional values, involvementin paid work was secondary and they were stillconcerned with their role in child caregiving, which wasconsidered to be different from a man’s role (Aryeeet al. 1999). This role might also be different from that ofworking women in Western Society (Lu et al. 2006;
Adya 2008), because having paid work for theseTaiwanese women was not something they wanted forthemselves but was to meet family needs.

Reconciling paid work and care responsibilities
Caregiving for adults with intellectual disabilities
normally requires both a long-term commitment andlong hours (typically all day long), as well as including
both physical and emotional work. Once deciding toseek employment and take care of an adult withintellectual disabilities simultaneously, mothers must
develop strategies to make these dual roles compatible.
The main strategies found in this study for thesemothers to reconcile their paid work and care

6 Journal of Applied Research in Intellectual Disabilities

responsibilities were work flexibility (e.g. working
hours), building/having family (e.g. strong social
networks and social support, use of formal social
services) and individual strengths (e.g. personal beliefs)
as external and internal resources (as shown in Table 2).

Work flexibility
Flexible working hours significantly impacted the abilityof the mothers to reconcile their paid work and care
responsibilities. The following coping strategies devised
to achieve flexible working hours were found:Self-employment. Seven of the mothers were currently
self-employed. One mother worked 12 hours a day as achildminder for her sister’s grandchild from Monday to
Friday and said ‘I take care of both my sister’s grandchild andmy daughter (with ID) as well. I cannot leave my daughter andwork outside of the home’ (#3). Three self-employed mothers,
one a tailor and two hair dressers, all working from theirhomes, stated: ‘My work does not conflict with caring for mydaughter (with ID). I am used to working late in the evening
after my childcare responsibilities and family housework arefinished. I can work until late of night’ (#6); ‘When customers
have left, I help her (daughter with ID) take a bath’ (#4); ‘I am ahair dresser working at my home, which is convenient for taking
care of my daughter (with ID)’ (#14).
Working at home with flexible working hours
explains why these mothers could reconcile their paid
work with their caregiving roles. Moreover, one of theself-employed mothers stated that she might be fired if
she were employed by a company, owing to her dual
roles (#2). To combine the two roles, another selfTable 2 Themes among mothers making paid work and care
fit together
Reconciling paid work and care responsibilities
A. Work flexibility
Self-employment
Good relations with employers
Work position and work location
Civil service
B. Family and individual strengths
External: strong social networks and social support
Support from husbands
Support from family members
Support from neighbours/colleagues/service workers
Use of formal services
Internal: positive personal attitudes and spiritual support
Positive attitudes
Spiritual support

employed mother mentioned that, to have free andflexible working time, both she and her husband quit
their full-time jobs and started their own familybusiness (#12).

Good relations with employers. Nine mothers were
employed outside of the home. In Taiwan, although the2002 Act of Gender Equality for Employment mandates
unpaid care leave, in practice, the policy is seldom
implemented. Both the employers and employees are
generally unaware that the former is legally obligated tooffer care leave for family members to the latter.
Consequently, it is usually personal relationships
between the employee mothers and their employers that
determine whether mothers receive support forbalancing their paid work and care responsibilities. The
mothers in this study employed by a restaurant, hotel,
factory, day care centre for children with special needs,
hospital and kindergarten mentioned that theiremployers were aware that they had a child withintellectual disabilities, which was why they gave themflexible working hours whenever necessary. ‘I am mostgrateful to my employer’ was a common expression
among those mothers (#1, #5, #7, #13).
The flexible work hours that the mothers received
were a favour based on the good relationship with theiremployers. Some of their employers were previous
acquaintances, such as relatives, neighbours, membersof their church or former customers, before hiring them.
For instance, one of the mothers mentioned that she had
been hired earlier by one of her relatives who allowed
her son (with intellectual disabilities) to accompany her
on a chicken farm where she worked (#5). The motherwas thus able to negotiate with her employer for more
flexible working hours.
Work position and work location. Two mothers (#8, #11)
were leaders of their work units (hospital andkindergarten),subsequently
givingthem
moreautonomy in terms of a flexible work schedule, such as
when applying for personal leave. Both of themconfirmed that without their managerial positions, theywould have difficulty in continuing their current
employment. The mother (#13) who worked in arehabilitation centre for children with disabilities
mentioned that her work place was on the way to her
son’s (with intellectual disabilities) day care centre,
allowing her go to and return from work and the centre
along the same route. She wondered whether she would
continue her current employment if it were not for her
ideal work location and work schedule. She stated:© 2012 Blackwell Publishing Ltd

Journal of Applied Research in Intellectual Disabilities

I am able to continue my current employment because
my work schedule fits in with my son’s schedule forreceiving care. As he goes to the daycare center, I go towork. When he leaves the daycare center, I also complete
my work (#13).

Civil service. Civil servants often feel more secure thanthose working in the private sector owing to their stablesalary and employee benefits such as personal leave andleisure time off, childcare leave and a retirement
pension. Two of the mothers in this study (#10, #15)
cited this as a major factor in continuing their current
employment. For instance, one of the mothers (#15)
working as a civil servant in an income tax bureau
reported that as long as she fulfilled her responsibilities,
she could not be fired. She was able to more easily
combine her dual roles than other working mothers
were.
Family/community strengths – strong social networks andsocial support
Support from husbands. Most of the mothers living with
their spouses described their husbands as supportive.
For instance, a self-employed mother working at home
in a family business (#9) mentioned that not only did
her husband perform more housework (60%) than she
did (40%), but also that her daughter with intellectual
disabilities was extremely close to her husband. A
mother working at a hospital (#8) mentioned that she
depended heavily on her husband to transport her son
with intellectual disabilities to his day care centre,
because it was more convenient for her husband to doso. She also felt that her husband contributed
significantly to meeting their care needs.
Nevertheless, according to Taiwan’s social norms,
having a child with a disability is generally viewed as apersonal family matter, rather than a matter warranting
outside assistance. Consequently, some mothers (#12,#13, #15) complained that, although their husbands
could share caregiving tasks and were supportive
through their employment and caregiving tasks, sociallynormative attitudes posed barriers for them, making it
hard to receive assistance from immediate family or
governmental welfare channels. One employed mother(#13) even noted that the entire family, including her
husband, thought she should be solely responsible fortaking care of her child with intellectual disabilities
because she was the mother.
© 2012 Blackwell Publishing Ltd

7

Support from family members. Some mothers had family
members contributing to the caregiving tasks when theyand their husbands went out to work. For instance, one
mother (#1) mentioned that while she worked as a
waitress at a restaurant from afternoon to late evening,
her husband, son, daughter and daughter-in-law would
help take care of her daughter with intellectual
disabilities after she returned from the day care centre
in the late afternoon. Two mothers who lived with theirhusbands’ families (#11, #13) described receiving
support from their parents-in-law and sister-in-law. Oneof them mentioned: ‘Upon returning from work, I do
not need to do much housework… I have a good
husband, and mother-in-law; even my father-in-law
helps care for her (daughter with ID)’ (#11). However,
the other (#13) mentioned that, despite living in thesame household and sharing housework, her mother-inlaw and sister-in-law did not care for her son withintellectual disabilities when she was off to work.
Nearly half of the mothers in this study received ahigh degree of support from immediate family
members, including their mothers (#1, #9, #10, #15),
sisters (#7, #10, #15) and brothers (#12). One mother(#15) said her mother was extremely protective of her
daughter with intellectual disabilities and provided agreat amount of emotional support and encouragement
while raising her daughter; her sister helped babysit her
daughter before she was three years old. Anothermother (#13) even mentioned receiving financial
assistance from her father.
Support from neighbours/colleagues/service workers. Twomothers said they were fortunate to have a tremendous
amount of support from their social networks;
otherwise, they would not be able to continue theiremployment (#10, #15). One of them (#15) said ‘I only
have to make one phone call in order to access many resources
and assistance from many people… in addition to mycolleagues, one of my colleagues’ brother-in-law is a physician
who has taken care of my daughter and has become a goodfriend of the family. Also…my good friends, …the service
workers in the kindergarten and daycare center also pay close
attention to my daughter…’. Another mother (#10) said ‘I
am fortunate to have so many resources’. She ranked hermother-in-law as providing the most support, followed
by her siblings and mother, and, finally, neighbours. She
and her mother-in-law lived in an old residential area
for military veterans, in which the neighbours had
known each other for 30 years or longer. All neighbours
knew her son with intellectual disabilities and, if she

8 Journal of Applied Research in Intellectual Disabilities

and her family were unavailable, they would
occasionally take care of her son after he returned fromthe day care centre. Within this informal support
network, she did not need to use respite care service
from formal systems.
However, in comparison with some other mothers inthis study, these two mothers with strong personal
networks had quite similar social backgrounds
including a higher educational level and work
experience as civil service employees. Other mothers
reported not receiving assistance from friends orrelatives; they also felt that their neighbours were notappropriate to offer such assistance or even have contact
with (#1, #2, #13, #14). As one mother (#13) explained‘We have little contact with our neighbours, who haveno idea of how to get along with my son (with ID).’

Using formal services. With her adult child withintellectual disabilities (#2) not using social services,
only one self-employed mother had hired a migrantcare worker as of the time the interview was conducted.
Eleven of the mothers’ adult children with intellectual
disabilities used day care services; one used respite care
(2 h weekly) (#4) and one used home care (three times
weekly at 1 h each time) (#3). Some mothers mentionedthat without day care services, they would not be able
to continue their caregiving roles (#8, #11, #13).
The mother who did not use formal services and thetwo mothers who used only very limited respite andhome care services were all self-employed. They did notwant to use or count on governmental support becausesuch resources were limited. They felt that these
services should be reserved for families with children
with intellectual disabilities who were in more direfinancial circumstances.
A self-employed mother working at home as ahairdresser (#4) had used a day care service previously,
but stopped doing so because she had very negative
experiences contacting service workers. She thus feltthat such services were not useful to her. She described
her experiences when her daughter with intellectual
disabilities was in a special school as follows: ‘When I
was working for customers, the teachers from the special
school would often call me on how to handle my daughter’s
condition. I had to leave work immediately to resolve theproblem… As I rushed on my motorcycle, I almost crashedinto a car on the way. …The teachers were unfriendly; they
only gave me extra work…I have never received governmental
support…the more you expect, the more you aredisappointed’. At the time of the interview, this motherand her daughter used respite care that was provided

by her friend whom she had known for 20 years. Somemothers (#1, #5, #7, #8, #10, #13) also mentioned that theco-payment for using day care services was too
expensive.
The self-employed mother (#2) who hired a migrantcare worker to help her with housework mentioned thatthe migrant care worker was extremely helpful with herhousework, and she would not have been able to carryout her dual roles if she had not hired her. Nonetheless,she said that the migrant care worker could not performthe caregiving tasks needed by her son with intellectual
disabilities. She said ‘I work 10 to 12 hours daily, and I am
not as young as before. Without a migrant care worker, I
might die while trying to function in the dual roles of motherand working professional. However, I do not ask the migrantcare worker to take care of my son (with ID), because she isunfamiliar with my son’s conditions’.

Individual strengths – internal positive personal attitudes
and spiritual support
Positive attitudes. As with previous analyses, all of theselifelong mother carers had experienced difficulties when
taking care of their adult child with intellectual
disabilities for 2 or 3 decades while simultaneously
functioning in the dual roles of employment and family
responsibility. Some mothers adjusted their attitudes
towards these roles by taking a more positive approachor learning to ask for assistance to share care
responsibilities. Furthermore, some mothers adopted amore positive attitude towards caregiving or towards
their life experiences. For instance, one of the mothers(#15) appreciated her daughter with intellectual
disabilities in cooperating with her so well that she
could continue her professional career. Another mothershared: ‘Remaining optimistic is essential; regardless of how
happy or unhappy you are with life, you must still live it.
Many gods help us to get through life. It just takes time’(#14). The findings also found that the strong
personalities of some mothers helped to make their tworoles compatible. For instance, the two mothers who
had created family businesses said ‘I will succeed despite
extremely difficult periods of my life’ (#2) and ‘Self confidenceis vital…; I am not a weak individual, I am highly
responsible’ (#9). Other mothers shared the following:
I now easily accepts my fate in life… For me, I need toboth care for her (daughter with ID) and earn an income(for the family business). …I do not feel that taking careof her is burdensome (#12).
© 2012 Blackwell Publishing Ltd

Journal of Applied Research in Intellectual Disabilities

I learned a long time ago how to be good to myself. But
learning how to ask others for help has been slow
process. …I have not asked him (the husband) to share in
the caregiving work until recently (#13).

Spiritual support. Several mothers cited religious beliefs
or attributed their predicament to fate as a means ofcoping or balancing their dual roles (#2, #6, #8, #9, #11,
#12, #13). Such religious beliefs became these mothers’internal spiritual support systems. Our findings also
indicated that some of these mothers who citedreligious beliefs for coping were also the same mothers
who linked fate with their caregiving role (e.g. #2, #8,#9). Additionally, these personal beliefs helped themothers to modify their attitudes towards care
responsibilities to be more positive. One of the mothers
living with her parents-in-law even felt that serving as
a carer for her daughter with intellectual disabilities
was not as difficult as being a daughter-in-law of herparents-in-law. For instance, these mothers shared thefollowing:
Without religious beliefs, I might burn out fromexhaustion. …I watch TV series on the Dar-I channel (aBuddhist TV channel), and understand that other people
suffer more than I do. …I have participated in Buddhist
worship, …I also read religious books, …I have cried a
lot in front of the statue of Pu-sa (a Buddhist deity)…I
can feel strength and support from such worship. …now
my life is changed. …I can accept my fate in life… (#2).

…I have no complaints, and Buddha accompanies those
who believe in him and makes things perfect (#6).

Buddhism gives me tremendous moral support. …life isjust like a test; if we respond well, then we can pass the
test….Without her (daughter with ID), I may be morenarrow minded. …Now I am more relaxed and open
minded than before (#9).
In review of our main findings, it was observedthat these mothers were not only combining the rolesof caregiving and paid work (Barnett & Hyde 2001;
Lippe et al. 2003), but they were also using deliberate
strategies to make their paid work fit in with theircaregiving responsibilities. It is also important to notethat the findings of this study pinpoint the differences
between the employed and self-employed mothers as© 2012 Blackwell Publishing Ltd

9well as the different levels of economic andeducational background that are related to thestrategies the mothers use to fit paid work with theircare responsibilities. In addition, some mothers,
including both those who used and did not use day
care services, indicated that paying for formal services
was a big financial burden. For these lifelong mothercarers, cognitive appraisal – or maintaining a positive
attitude – is an important coping strategy that canhelp them to view their situations more positively(Folkman & Moskowitz 2000).

Discussion‘Working carers’ rather than ‘caring workers’
The mother participants in this study were employed
for at least 30 hours weekly and had an adult childolder than 18 years old with intensive care needs. All of
the mothers were thus middle aged and had been acarer for their adult child with intellectual disabilities
for at least 18 years. All mothers compared theirdifficulty in caregiving for their adult child withintellectual disabilities when he or she was younger
with that experienced now. Experiences of thesemothers are consistent with those of previous studies,
which suggest that caregiving to the young adults withintellectual disabilities (aged 18–40) might be lessdemanding than that for young children withintellectual disabilities (Fitting et al. 1986; Barusch &Spaid 1989; Hooyman & Gonyea 1995; Heller et al.
1997a,b).
Although some mothers were even the main income
earners of their families, still they continued to function
as the main carers of their children with intellectual
disabilities. Surprisingly, no mothers complained about
the inequity of care responsibilities between themselves
and the fathers; rather, some even expressed gratitude
for their husbands’ support. They viewed taking care of
their adult children with intellectual disabilities as their
responsibility because they were the birth mothers. This
attitude corresponds to traditional ideology on genderroles (Pascall 1997). However, it also reflects Kahu &Morgan’s (2007) previous arguments that a lack offormal support would maintain traditional roles inwomen’s lives. Our findings therefore suggest that theselifelong caregiving mothers in Taiwan who areemployed are ‘working carers’ rather than ‘caring
workers’, according to Kr€
oger’s (2007) definitions ofthese two concepts.

10 Journal of Applied Research in Intellectual Disabilities

Cultivating relationships is key for mothers handling
dual roles
Under such societal circumstances, formal support isgenerally limited in terms of meeting the needs of theselifelong mothers, so informal support becomes a vital
strategy for these mothers to combine their paid workand caregiving roles. The mothers have had to build
good relationships with their internal and externalfamily networks, such as their husbands, in-laws andcolleagues, including service workers, employers fromformal social systems and their workplaces. In
Taiwanese society, such relationships may overlap, andthe boundaries between personal relationships,
employment and formal service systems are occasionallyinseparable. In other words, working family carers in
Taiwan, where the formal support system is inadequate,
must utilize various relationships, including those in
their personal social networks and workplaces, toreconcile the conflict between paid work and care
responsibilities.

Social status differentiates coping strategies used bymothers
According to our findings, the self-employed mothers
and the mothers at lower economic and educational
levels (i.e. lower social status) had less informal support
than the employed mothers and the mothers withhigher economic and educational background levels.
Thus, the latter, with a higher level of social support,
both formal and informal, might be able to maintainemployment out of their home. Otherwise, they must
develop alternative strategies to make their paid work
compatible with their care work; self-employment is an
example of such a strategy.
The mothers in our study with a higher social status
had more access to social support and resources,
including developing good relations with formal service
systems. Accordingly, social status of the mothers ismeaningful in terms of their links with their social
networks. For instance, the mothers in our study who
had a higher educational level were employed at a
managerial level or worked for the government, thus
giving them stronger social networks that offer more
support than those mothers with a lower educational
level and who were self-employed as a hairdresser, atailor or a childminder or were employed as a cleaner.
This observation is similar to the findings of otherempirical studies where the social and demographic
factors of family carers were associated with their social

support systems, including their awareness and use ofsocial services; these factors were also identified asaffecting the quality of life of the family carers (Barusch& Spaid 1989; Seltzer & Krauss 1989; Chou et al. 2007,2008). In addition, consistent with the results of aprevious study (Brandon 2007), these employed mothers
increased their available time for caregiving using
strong social networks that offered caring support as aresult of the special needs of their adult children withintellectual disabilities.

Who is able to use social service as a strategy for
combining dual roles?
Compared with the self-employed mothers, nearly all
employed mothers with adult children with intellectual
disabilities used day care services to reduce theircaregiving burden. However, while these employed
mothers mentioned the importance of formal services,
their experience in using the service was not always apositive one. For instance, the day care services may not
fit the work schedule of mothers. Additionally, payment
for the formal services may create a large financial
burden because the subsidy of the co-payment is basedon family income and the severity of the children’s
disability. Consequently, some of the mothers had tolearn how to combine their dual roles without the useof formal services, and self-employment was analternative that allowed their work to fit in with theircaregiving.

Cognitive coping strategies
Our findings further demonstrated that several mothers
incorporated their own perceptions, religious beliefs orpositive attitudes as part of their strategies for balancing
their dual roles. The findings closely resemble those ofprevious studies (Hong & Seltzer 1995; Smith 1996;
Heller et al. 1997a,b; Blacher et al. 2007; Minnes et al.
2007; Chou et al. 2011), where positive caregiving
appraisals affected the unique lifelong care role of thesecarers and yielded positive consequences with respect totheir psychological well-being. Likewise, our study
indicates that religious beliefs have an affirmative
impact on mothers’ attitudes towards their lifelong
caregiving roles.

Implications and Conclusions
In conclusion, according to our findings, the mothers ofadult children with intellectual disabilities used their own© 2012 Blackwell Publishing Ltd

Journal of Applied Research in Intellectual Disabilities

resources and developed individual, community andfamily strengths into strategies to combine their paid workwith their care responsibilities. Among the various
strategies adopted by the working mothers in this study,
the most crucial one is probably their informal support andsocial network. In contrast, formal support lagged behind inimportance for mothers who have spent their lives (e.g.
over 20 years) juggling the two roles of caregiver andincome earner, particularly for those mothers with limited
informal support. This issue deserves special attention,
because the working mothers of adult children withintellectual disabilities, who are lifelong carers experiencing
unique life cycles and life situations, may gradually lose
their supportive networks later on, especially when they
undertake additional caregiving roles and becomecompound carers (Perkins 2010; Perkins & Haley 2010).
This situation may worsen in Taiwanese society, in which,based on our study, different social relationships and social
networks for an individual are often overlapping andinterchangeable. Loss of employment may also lead to
reduced informal support for caregiving tasks, as well as a
reduction in emotional and health benefits, as suggested ina previous study (Parish 2006). Formal systems must begin
to help these lifelong mother carers to obtain the resourcesthat will make their dual roles compatible with each other.
How to change Taiwan’s policies to support these working
mothers and help them reconcile employment and family
responsibilities warrants serious consideration. For
instance, the authors recommend the current 7-day amountof unpaid leave for care of family members not only be
increased but also, more importantly, be amended to
become paid and must be routinely implemented,
particularly for mothers preferring informal support.
Furthermore, formal support, in the form of more formal
services such as day care, home care and respite care,should be made available and affordable to them.
Additionally, support for grandparents, other extended
family members (e.g. sisters of the mothers) and neighbours
or colleagues with training and transportation for thosemothers has to be considered in the future policy making.
Our study also found that some of the mothers who
were able to combine their two roles using their own
resources would not choose to use the social services
due to wanting to leave such formal resources for thosemothers who needed them most. First, this suggests thatsocial services delivery and interventions development
need to fit with the timetable of mothers’ paid work andmeet affordability standards. Second, further researchneeds to explore the reasons (e.g. affordability, access,eligibility, necessity or distrust of formal services) why
some mothers would prefer to use their own resources© 2012 Blackwell Publishing Ltd

11rather than count on the government. Meanwhile, futurestudies are warranted to determine whether informal
sources of support are also preferred by mothers ofadult children with intellectual disabilities in othersocieties where formal support is not as limited as it isin Taiwan. In addition, research should be undertaken
in other cities and counties in Taiwan as well as in othersocieties to determine whether the strategies themothers in this study used to combine work and carewould be replicated by those of mothers in similar
situations but different locales or social contexts.

Limitations
As described above, the working mothers were first
recruited through a census survey and 45 of theparticipants were working full-time and that the adultchild had severe or profound intellectual disabilities;
and all these 45 working mothers were invited to join
our interview. In the end, only 5 accepted andcompleted our interviews and 40 mothers declined ourfollowing in-depth interview. Majority of the mothers
who refuse to be interviewed again in this study repliedthat they were too busy for their full-time paid work.
As a result, another 10 working mothers were fromparental support organizations and social service
agencies through the research team members’
connections. First, generally the participation rate of themothers approached in this study was relatively low;
only 15 working mothers accepted the interview.
Second, this convenience sampling, used due todifficulties in identifying the research subjects, cannot
generate a representative sample of the population ofworking mothers of adult children with intellectual
disabilities in Taiwan. Third, social desirability bias thatmight influence the validity of this study is anotherconcern of the limitations. Despite the above limitations,this study significantly contributes to efforts tounderstand working mothers of adult children withintellectual disabilities in Taiwan and to devise coping
strategies for this population group to allow them toreconcile paid work with their care responsibilities.

Acknowledgments
This paper draws on data collected for a project fundedby the National Science Council in Taiwan (NSC97-2621M-010-003) and also cooperated with the Wocawo
project(https://www.jyu.fi/ytk/laitokset/yfi/en/
research/projects/wocawo). The authors wish to thankall the participants for sharing so much with us. Tyra

12 Journal of Applied Research in Intellectual Disabilities

Twomey-Smith
assistance.

isappreciated

for

her

editorial

Correspondence
Any correspondence should be directed to Li-yeh Fu,
Institute of Health and Welfare Policy, National YangMing University, 155, Li-Nong Street, Section 2, Peitou,
Taipei, 112 Taiwan (e-mail: lyfu@ym.edu.tw).

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