Journal of Intellectual & Developmental Disability, March 2011; 36(1): 7379

BRIEF REPORT

Health status, social support, and quality of life among family carers
of adults with profound intellectual and multiple disabilities (PIMD)
in Taiwan

YUEH-CHING CHOU, CHI CHIAO & LI-YEH FU

Institute of Health and Welfare Policy, National Yang-Ming University, Taipei, Taiwan

Abstract
Background Primary family carers of adults with profound intellectual and multiple disabilities (PIMD) experience a range
of considerable demands.
Method A census survey was conducted in a city of Taiwan; 796 family carers of adults (aged 18 or older) diagnosed with
intellectual disability and/or with multiple disabilities living with the family completed interviews.
Results Adults with PIMD made up 9.5% of this group (n 76). Nonparametric analyses showed that health status, formal
social support, and quality of life (QoL; physical domain score) of carers of adults with PIMD were significantly lower than
their counterparts (i.e., carers of adults with less severe disability), and that these variables were significantly associated with
carer educational level, employment status, family income, and social networks.
Conclusions Interventions need to include the creation of a supportive environment for adults with PIMD and their lifelong
family carers, particularly those who are more socially disadvantaged.

Keywords: intellectual disability, multiple disabilities, profound disability, PIMD, family carer

Introduction
Persons with profound intellectual and multiple
disabilities (PIMD) are among the most marginalised
people in society (Gittins & Rose, 2007). They have
the highest support needs and are the most reliant on
services (Mencap, 2009). Research has begun to
explore how to promote best practice and accessible
interventions to meet the complex health and social
needs of people with PIMD (Carnaby & Cambridge,
2002; Zijlstra & Vlaskamp, 2005).
Several studies have identified that having an adult
with severe intellectual disability (ID) in the family is
associated with a major increase in caregiving
demands (Greenberg, Seltzer, & Greenley, 1993;
Heller, Hsieh, & Rowitz, 1997; Pinquart & Sorensen,
2006). Lifelong family carers may experience stress
from other sources, including their own health
problems or in becoming divorced/widowed (Kim,
Greenberg, Seltzer, & Krauss, 2003; Seltzer &

Krauss, 1989). The health status of this population

is also closely associated with their prevailing social
demographic variables and economic conditions
(e.g., age, gender, marital status, education, income,
and social support; Emerson, Robertson, & Wood,
2004; Lloyd & Rosman, 2005; Marmot & Wilkinson,
1999). In Taiwan, families with a member with ID
may be socially stigmatised and may lose face (Chou
& Palley, 1998). Additionally, perceived stigma has
been shown to have a strong association with an
adverse quality of life (Chou, Pu, Lee, Lin, &
Kroger, 2009).
PIMD is characterised by an individual who is
diagnosed with a low IQ and more than one disability
(Hogg, Juhlberg, & Lambe, 2007; Hogg, Reeves,
Roberts, & Mudford, 2001; Mencap, 2009; Zijlstra
& Vlaskamp, 2005). In Taiwan, to be eligible for
welfare disability benefits, families need to go
through an official registration based on a medical
diagnosis by a physician. Currently, there are 16

Correspondence: Professor Yueh-Ching Chou, Institute of Health and Welfare Policy, National Yang-Ming University, Taipei 112, Taiwan.
E-mail: choucyc@ym.edu.tw
ISSN 1366-8250 print/ISSN 1469-9532 online 2011 Australasian Society for Intellectual Disability, Inc.
DOI: 10.3109/13668250.2010.529803

74

Y.-C. Chou et al.

types1 of disabilities, with four levels of disability (i.e.,

profound, severe, moderate, and mild) recognised in
Taiwan. The official definition of ID is thus based on
an individuals IQ score and her or his neurological
examination results, mental health condition, selfcare ability, communication skills, and maladaptive
behaviour (Taiwan, ROC, Ministry of Interior,
2009). Furthermore, while a person is diagnosed
with multiple disabilities (MD) by a physician, she or
he might also be diagnosed with ID. Based on
government data in 2008, 93,346 people of Taiwans
population of 23 million were diagnosed with ID,
101,827 were diagnosed with MD, and about 10% of
this group also had ID (4.5 per thousand population
with ID). In total, 11.3% of individuals with disability
were diagnosed with a profound level of disability.
Additionally, in Taiwan, most people with disability
(93%) live with their families (Taiwan, ROC,
Department of Social Affairs, Ministry of Interior,
2009) and less than 10% use residential services
(Chou & Schalock, 2007).
Based on previous studies and the diagnostic
regulations in Taiwan, as discussed above, an
individual with PIMD was defined in this study as
one who met all six of the following criteria, based
on the official diagnoses and the measurements of
the current survey: (a) the person was diagnosed
with profound ID, as identified in her or his
disability certificate; (b) the person had more than
one disability; (c) the person was measured as having
a profoundly low level of Instrumental Activities of
Daily Living (IADL) score; (d) the person had a
limited ability to communicate and understand; (e)
the person was not able to self-care completely; and
(f) the person was unemployable in the labour
market.
Until now, researchers have paid little attention to
the primary family carers of adults with PIMD both
in Western and in Taiwanese contexts, and the
complex needs of people with PIMD in Taiwanese
society have not been examined at the policy level.
The aims of this study were first to describe the
characteristics of the primary family carers of adults
with PIMD, then to provide a profile in carer health,
social support, and quality of life (QoL) for the
primary family carers of adults with PIMD in
comparison to the primary family carers of adults
with less severe ID.
Method
The participants
family carers of
living with their
City in Taiwan

in this survey were the primary

adults with ID or with MDID
primary family carers in Hsinchu
(family carers of adults with ID

using residential services were excluded). The

prevalence of people with ID in this city is typical
to that of the whole country (Hsinchu City
Government, Taiwan, ROC, Department of Budget, Accounting and Statistics, 2010). A face-to-face
interview was conducted with all primary family
carers of adults with ID or with MDID who were
18 years of age or older. Of the 934 adults with ID
or MDID aged 18 or older living with family
carers, 47 were not living at the provided address
and 91 declined to participate in the study. Thus, a
total of 796 family primary carers of adults with ID
or MDID completed the interview (response rate,
85.2%) at their homes between December 2007 and
April 2008 (for details, see Chou, Pu, Kroger, &
Fu, 2010).
The interview questions related to the characteristics of the adults cared for and carer demographic
data and health status data. The functional behaviour
of the adults with ID or MDID was measured by
assessing activities of daily living (ADL) using the
Barthel Index (Mahoney & Barthel, 1965) and
Instrumental Activities of Daily Living Scale
(IADL) by Lawton and Brody (1969). A higher
score indicated better functioning. Internal reliability
(a) in the current study was .94 for the ADL and .87
for IADL. For the data analysis in the current study,
the adults ADL and IADL scores were also
converted into nominal variables. The ADL scores
ranged from 0 to 100 and were categorised as
follows: less than or equal to 20 was classified as
profoundly disabled, 2160 was severely disabled, 6190
was moderately disabled, and 91100 was classified as
mildly disabled. The IADL scores ranged from 0 to 24
and were categorised as follows: a score of less than
10 was considered profoundly disabled, 1012 was
severely disabled, 1314 was moderately disabled, and
1524 was considered mildly disabled (for details of
the ADL and IADL, see Chou, Lin, Chang, &
Schalock, 2007).
Carer general health status was measured using the
EQ-5D2 Chinese version, with an alpha of .72 for the
796 participants. A higher score indicated a better
health status (for details about the scale, see Chou
et al., 2010). Family social support was measured
using a translated Chinese version of the Family
Support Scale developed by Dunst, Jenkins, and
Trivette (1984). It covered informal social support
(13 items) and formal social support (6 items); a
higher score indicated greater family support. In the
current study, internal reliability of formal social
support and informal social support items was .92
and .78, respectively (for details about the scale, see
Chou et al., 2007). The carers QoL was assessed
using the WHOQoL-BREF Taiwan version,

Brief Report: Family carers of adults with PIMD

containing 28 items and four domains; namely,
physical, psychological, social relationships, and
environment (Yao, Chung, Yu, & Wang, 2002). A
higher score indicated better QoL. Cronbachs
alphas were .86, .78, .71, and .79 for the domains
of physical, psychological, social relationships, and
environment, respectively (for details about the
scale, see Chou et al., 2007). The carers were also
asked about their age, gender, marital status,
employment status, years of formal education
received, kinship with the adult with ID for whom
they cared, number of years of caregiving provided,
number of hours of caregiving daily, family income,
and their use of family support services (day care,
home care, respite care through an agency, respite
care at home, and home nursing care). Co-payment
is required for these services and is based on the
level of family income and disability (Hsinchu City
Government, Taiwan, ROC, Department of Social
Affairs, 2010).
Statistical analyses began with describing the
prevalence of PIMD and then characterising health
status, QoL, and social support by severity levels of
ID. Lastly, using w2 tests for categorical variables and
a MannWhitney U-test for continuous variables, we
examined whether there were significant differences
between the different groups. All analyses were
conducted using SPSS, Version 18.0 (SPSS Inc.,
Chicago, IL, USA).
Results
According to the definition of PIMD used in this
study, we screened all 796 adults with ID or with
MDID. Of them, 347 adults had a profoundly low
level of IADL. From this group we selected those
adults with at least one additional disability, such as
a profoundly low level of ADL (n 24), those
diagnosed with MD (n 79), or profound ID using
aid equipment (n 36), adults with visual impairment (n 5), hearing impairment (n 10), or
adults with mental health problems (e.g., depression,
dementia, hyperactivity, etc.) (n 49). From this
same group of adults, we excluded those who were
employed in the labour market, who were able to
communicate well enough to hold a job, understood
language well, who were able to self-care completely,
and who were selected more than once in the above
screening process. This screening process yielded 76
(9.5%) adults with profound ID, a profoundly low
level of IADL or MD, plus one more disability. The
average age of the 76 adults with PIMD was 40.2
years (SD 17.2); 53.9% of them were men, 37%
had ID, 48.7% had chronic illness, 42.1% used aid
equipment, 22.4% had vision problems, 28.9% had

75

hearing problems, and all of them were unable to

communicate and understand language well, and
had other disabilities.
Table 1 shows that the average age of the primary
family carers of the adults with PIMD was 57.6
(SD 10.7). Two-thirds of the carers were women
(67.1%). Of the total carer group, 47.4% were
mothers, 19.8% were fathers, 11.8% were spouses,
9.2% were siblings, and 11.8% were other relatives.
Half (50.0%) of the carers received six or fewer years
of education and 76.3% were married and lived with
a spouse. About 40% were employed full- or parttime, and 72.3% had a family income of less than
NT$40,000 monthly. The carers of adults with
PIMD were more likely than the carers of adults
with less severe ID to report poorer health (EQ-5D)
(Z 72.66, p 5 .01) and a lower level of QoL in
the physical domain (Z 72.80, p 5 .01). Nearly
90% of the carers of adults with PIMD used public
services in contrast to less than two thirds (64%) of
the carers of adults with less severe ID (w2 20.51,
p 5 .001). Furthermore, a higher level of formal
social support was found for the carers of adults with
PIMD than their counterparts caring for adults
without PIMD (Z 1.97, p 5 .05).
In order to differentiate whether or not the
primary family carers whose health status, formal
social support, and physical health (QoL physical
domain score) were related to their socioeconomic
and demographic backgrounds, we used the median
scores of carers to classify them into two groups in
terms of higher versus lower health status, formal
social support, and physical health QoL score. We
then compared these two groups to determine
whether there were any significant differences
between them. For those carers whose health status
was above the median scores (i.e., they had better
health), a greater proportion of them were employed (w2 7.93, p 5 .01) and had more years of
education (Z 2.73, p 5 .01) than the carers
whose health status was at the median score or
below (Table 2). For those carers whose formal
social support was higher than the median, they had
received more years of education (Z 2.15,
p 5 .05). Furthermore, the carer group whose
scores for QoL in the physical domain were higher
than the median, cared for adults with PIMD who
were more likely to be healthy (w2 6.97, p 5 .05);
they were also more likely to be employed full-time
or part-time (w2 6.93, p 5 .05), had higher
family monthly incomes (w2 10.24, p 5 .01),
and received more years of education (Z 2.47,
p 5 .05) compared to carers whose QoL scores in
the physical domain were at the median score or
below.

76

Y.-C. Chou et al.

Table 1. Family carer characteristics by severity level of adults in care (PIMD versus less severe disability) (N 796)

Variables
Age (M)
Gender (%)
Number of years
education
received (M)
Kinship with adult
with ID (%)

Marital status (%)

Employment status (%)

Number of years
caregiving (M)
Number of hours
caregiving daily
(M)
Family monthly
income (%)
Service use (%)
Health (EQ-5D) (M)
Formal social support
(M)
Informal social
support (M)
WHOQoL domains
Physical (M)
Psychological (M)
Social relationships
(M)
Environment (M)

Items

Female

Mother/father
Other (spouse, child,
sibling, grandparent, grandchild,
friend, or other relative)
With spouse (married/
cohabiting)
No spouse (divorced, widowed,
separated)
Full-time/part-time employed
Not employed

5NT$20,000
NT$20,00040,000
4NT$40,000
Yes

Total
(N 796)

Adults with
PIMD (n 76)

Adults with
ID/MD ID but
not with PIMD
(n 720)

54.9
68.8
8.0

57.6
67.1
7.8

54.6
69.0
8.0

71.88
0.12
70.41

68.2
31.8

67.1
32.9

68.3
31.7

0.05

72.0

76.3

71.5

0.78

28.0

23.7

28.5

50.9
49.1
23.9

39.5
60.5
23.0

52.1
47.9
24.0

70.71

14.3

17.2

14.0

73.03**

29.9
41.6
28.5
66.1
13.7
5.1

27.6
44.7
27.6
89.5
13.5
5.7

30.1
41.3
28.6
63.6
13.8
5.0

0.37

20.51***
72.66**
71.97*

12.0

12.6

12.0

71.15

13.9
12.6
13.5

13.3
12.3
13.4

14.0
12.7
13.5

72.80**
71.37
70.50

12.8

12.8

12.8

70.09

Z or w2

4.37*

*p 5 .05. **p 5 .01. ***p 5 .001.

Discussion
We found that 9.5% of the adults diagnosed with ID
or with MDID aged 18 or older had PIMD;
specifically, about 5% of adults with ID and about
50% of adults with MDID had PIMD. To our
knowledge, this study is the first attempt to provide a
profile of people with PIMD among adults diagnosed
with ID and those diagnosed with MDID. It is
worthwhile to point out that the majority of primary
family carers of these adults with PIMD were their
parents (67%), they were not young (58 years old on
average3), and were female (67%). Nonetheless,
these middle-aged and older primary family carers
provided complex care to their adult family members
with PIMD (for 23 years on average). For some of

them, this care work has lasted over three decades.

Thus, these lifelong family carers who provided
highly demanding care were more likely to use family
support services, but they were also more likely to
have a lower level of health status and a lower QoL in
the physical domain than their counterparts whose
adult family members had less severe disability.
When we compared the two groups (Table 2) in
terms of the family carers of adults with PIMD who
had better health status and physical QoL to those
who had poorer health status and physical QoL, the
differences were related to the carers socioeconomic
background, such as education level and family
income. Meanwhile, in similar findings to those of
Chou et al. (2007), if the carers of adults with PIMD
were employed, were healthier, had a higher level of

Brief Report: Family carers of adults with PIMD

77

Table 2. Association of carer characteristics with carer health status, formal family support, and physical domain of QoL
(N 76)
Carer health status (EQ-5D)

Variables

Items

Beyond
median
score (higher
level)
n 38

Median
score
and below
n 50

Beyond
median
score (higher
level)
n 26

Median
score and
below
n 29

Beyond
median
score (higher
level)
n 47

n (%)

n (%)

n (%)

n (%)

n (%)

n (%)

Male
Female
w2

12 (31.6)
26 (68.4)

Carer kinship with

adults with ID

Mother/Father
Other
w2

30 (78.9)
8 (21.1)

Carer marital status

With spouse
No spouse
w2

28 (73.7)
10 (26.3)

Carer employment
status

Full-time/part-time
employed
Not employed
w2

Service use

13 (34.2)
25 (65.8)

14 (28.0)
36 (72.0)

21 (55.3)
17 (44.7)

33 (66.0)
17 (34.0)

30 (78.9)
8 (21.1)

38 (76.0)
12 (24.0)

21 (55.3)

19 (38.0)

29 (76.3)
17 (44.7)
7.93**

31 (62.0)

5NT$20,000
NT$20,00040,000
4 NT$40,000
w2

11 (28.9)
21 (55.3)
6 (15.8)

15 (30.0)
21 (42.0)
14 (28.0)

No
Yes
w2

3 (7.9)
35 (92.1)

Carer age
Z
Carer years of
education
received
Carer years of
caregiving
Carer hours of
caregiving daily

Z
Z

Physical domain of QoL

Median
score and
below
n 38

Carer gender

Family income
monthly

Carer formal family support

0.06

8 (27.6)
21 (72.4)

18 (69.2)
8 (30.8)

19 (65.5)
10 (34.5)

20 (76.9)
6 (23.1)

19 (65.5)
10 (34.5)

11 (42.3)

6 (20.7)

1.59

4.83

0.56

7 (14.0)
43 (86.0)
1.87

24 (51.1)

15 (57.7)

23 (79.3)
23 (48.9)
6.93*

6 (23.1)
13 (50.0)
7 (26.9)

11 (37.9)
10 (21.3)
16 (55.2)
18 (38.3)
2 (6.9)
19 (40.4)
10.24**

1 (3.8)
25 (96.2)

4 (13.8)
25 (86.2)

0.55
5 (13.2)
33 (86.8)

39 (83.0)
8 (17.0)
3.03

0.13

5.79

32 (68.1)
15 (31.9)
0.05

0.01

10 (26.3)
13 (34.2)
15 (39.5)

17 (36.2)
30 (63.8)
0.60

0.08

0.29
9 (23.7)

11 (42.3)
15 (57.7)

4 (8.5)
43 (91.5)
0.53

M (SD)
M (SD)
M (SD)
M (SD)
M (SD)
M (SD)
59.79 (10.56) 55.37 (10.45) 58.04 (10.47) 56.69 (11.19) 60.41 (9.90) 55.83 (10.85)
71.69
70.53
71.88
6.43 (3.55)
9.08 (3.98)
7.05 (3.98)
9.12 (3.68)
6.28 (3.47)
8.67 (4.03)
72.73**
72.15*
72.47*
25.58 (12.06) 20.39 (12.64) 24.04 (13.57) 20.96 (10.24) 22.83 (14.33) 23.09 (11.47)
71.93
7.86
7.14
18.63 (7.37) 15.78 (8.85) 18.02 (7.85) 15.63 (8.81) 18.76 (8.25) 16.24 (8.13)
71.64
70.99
71.61

*p 5 .05. **p 5 .01. ***p 5 .001.

education, and had a higher family income, they

were more likely to have a higher physical QoL. In
addition, if the family carers of adults with PIMD
had a higher level of education, they were more likely
to have a higher level of formal social support. This
implies that more highly educated carers may have
better access to social services information and may
have better links with social networks. Thus, it
appears that the need factor of the carers was not
significantly associated with the use of social services.
These findings suggest that the family carers of
adults with PIMD from lower socioeconomic status
groups have become the most vulnerable and have
higher support needs in terms of their health care,
physical QoL, and access to support systems.

These support needs should be addressed by both

national and local policies as well as by advocacy
groups related to the ID field in Taiwan.
Two limitations in this study need to be acknowledged. First, the definition of PIMD used in this
study may not be consistent with that used in some
Western studies. Second, the participants in this
study were drawn from only one city, and we focused
specifically on adults with ID or MD ID who were
18 years of age or older, and living with families in
the community. Thus, these data cannot be generalised to adults with PIMD in residential services and
those younger than 18 years, or to their carers.
International studies have not characterised family
carers of people with PIMD in great detail and have

78

Y.-C. Chou et al.

not described who they are, what they need, or their

unique life conditions. We found that these carers
need more support because they undertake extensive
and long hours of caregiving work, particularly those
carers with low socioeconomic status. Further
studies are warranted to compare whether there are
differences between family carers of different ages,
and to explore the impact of local cultural contexts
on these family carers health, social support, and
QoL. Additionally, future studies should incorporate
qualitative and longitudinal components to explore
and observe the conditions and unique needs among
adults with PIMD and their lifelong family carers.
Notes
1 The 16 types of disabilities include vision disability, hearing
disability, balance disability, voice or speech disability, limb
disability, intellectual disability, loss of functions of primary
organs, facial damage, chronic unconsciousness, senile dementia, autism, chronic psychosis, multi-disability, difficult-tocure epilepsy, physical or mental disability caused by infrequent disease and confirmed by the central competent
authority in charge of health and other disabilities (Taiwan,
ROC, Ministry of Interior, 2009).
2 The EQ-5D contained five items to measure five dimensions of
mobility, self-care, usual activities, pain/discomfort, anxiety/
depression, each of them coded by an ordinal number, ranging
from 1 (no problems) to 3 (extreme problems) (e.g., I have no pain
or discomfort, I have moderate pain or discomfort, I have
extreme pain or discomfort) (U.S. Department of Health and
Human Services, Agency for Healthcare Research and Quality,
2005). In this study, we recoded the ordinal numbers
(1 severe problems, 2 moderate problems, 3 no problems);
a higher score indicated a higher level of health.
3 The average age of the 76 adults with PIMD was 40.2 years.
The average age of those adults (n 51) cared for by their
parents was 31.2, and the average age of their parental carers
was 58.7 (SD 10.5). Older adults were more likely to be
cared for by their siblings or other relatives.

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