ORIGINAL ARTICLE

Support groups for caregivers of intellectually disabled family members:

effects on physical–psychological health and social support
Ying-Shun Wei, Hsin Chu, Chiung-Hua Chen, Yu-Jung Hsueh, Yu-Shiun Chang, Lu-I Chang and
Kuei-Ru Chou

Aims. This study aimed to examine the effectiveness of support groups for people caring for family members with intellectual
disability with the goal of improving their physical—psychological health and social support.
Background. Little is known about how differences in the support group context influence either the nature of the social support
available to caregivers of family member with intellectual disabilities or the effects on caregivers’ physical—psychological health
in eastern cultures.
Design. An experimental, preintervention postintervention control group design was used in this study.
Methods. The experimental group received intervention consisting of eight weekly support group meetings for caregivers of
people with intellectual disabilities. A total of 72 participants were recruited by permuted block randomisation and evaluated
before intervention, after intervention and at four-week follow-up. Participants were blinded to the arrangement. Longitudinal
effects were analysed by means of generalised estimating equations.
Results. (1) Physical-psychological health (somatic, depressive and anxiety symptoms) of participants in the experimental group
was significantly improved after the intervention and four-week follow-up. (2) After the support group, the experimental group
scored better than the control group on measures of social support (positive social interaction, emotional, informational and
material social support). At four-week follow-up, the differences between the two groups persisted except for positive social
interaction support, suggesting a continued positive effect of the support group on caregivers of family members with intel-
lectual disabilities.
Conclusions. The results of this study confirm the experimental hypotheses that caregivers benefit from participating in support
group interventions.
Relevance to clinical practice. The support group is an effective alternative intervention for promoting caregivers’ physi-
cal—psychological health status as well as their social support. Therefore, the support group should become a routine com-
ponent of the caregiver of people with intellectual disabilities.

Key words: carer, intellectual disability, learning disability, nursing, nuses, support group

Accepted for publication: 18 March 2011

Authors: Ying-Shun Wei, MS, RN, Supervisor, Department of
Nursing, Armed Forces Bei-Tou Hospital and Graduate Institute of
Nursing, College of Nursing, Taipei Medical University; Hsin Chu,
PhD, MD, Assistant Professor, Institute of Aerospace and Undersea
Medicine, School of Medicine, National Defense Medical Center and
Department of Neurology, Tri-Service General Hospital, Taipei;
Chiung-Hua Chen, PhD, RN, Assistant Professor, Department of
Nursing, Meiho University, Pingtung; Yu-Jung Hsueh, MS, RN,
Graduate Student, Graduate Institute of Nursing, College of Nursing,
Taipei Medical University, Taipei and Lecturer, Hsin Sheng College
of Medical Care and Management, Taoyuan; Yu-Shiun Chang, MS,
RN, Graduate Student, Graduate Institute of Nursing, College of
Nursing, Taipei Medical University; Lu-I Chang, PhD, RN, Assistant
Professor, Graduate Institute of Nursing, College of Nursing, Taipei
Medical University; Kuei-Ru Chou, PhD, RN, Professor, Graduate
Institute of Nursing, College of Nursing, Taipei Medical University
and Member, Psychiatric Research Center, Taipei Medical University
Hospital, Taipei, Taiwan
Correspondence: Kuei-Ru Chou, Professor, Graduate Institute of
Nursing, College of Nursing, Taipei Medical University, No. 250,
Wu-Hsing St., Taipei 110, Taiwan. Telephone: +886 2 27361661;
ext. 6324.
E-mail: kueiru@tmu.edu.tw

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Journal of Clinical Nursing, doi: 10.1111/j.1365-2702.2011.04006.x 1
E-S Wei et al.

Introduction and self-management, as well as maintenance of health and

safety. Functional adaptive behaviours comprise three skill
The prevalence of intellectual disability was estimated at 12
types: practical, social and learning skills. Practical skills
and 10% in eight-year-olds in 2000 and 2004, respectively
include daily living, recreational and occupational skills; social
(Centers for Disease Control and Prevention 2006). In
skills include communication, interpersonal skills and use of
Taiwan, there are around 93,346 of people with intellectual
community resources; learning skills refer to abilities in
disabilities and 23,312 of them were between 0–18 years of
functional subjects or techniques. Because of limitations in
age (Ministry of the Interior, ROC 2009). People with
self-care and difficulties with communication and self-expres-
intellectual disabilities live with their own families, whereas
sion, supporting a person with intellectual disabilities can be
only 7% live in an institution. Thus, families are still the
very stressful, even to the point of affecting the caregivers’
primary setting where people with physical and mental
physical, emotional, family and social well-being. This is
disabilities live and receive care. In addition, 78Æ91% of
especially true for Taiwanese women because culturally-
primary caregivers are women who provide care for up to
defined gender roles strongly impact caregiving practices.
14 hours per day (Ministry of the Interior, ROC 2009).
Taiwan culture has preserved the long-standing Chinese
Without doubt, this represents a long-term challenge for
tradition that the wife, adult daughter and daughter-in-law,
the family. A family with an intellectual disability member
particularly the wife of the eldest son, are expected to be the
must handle many potential family crises and individual
primary caregivers. Caregivers’ physical problems include
adjustment problems. Many studies show that participation
long-term sleep deprivation, physical discomfort, unrelieved
in support groups can improve the physical—psychological
stress and headaches, hypertension, frequent diarrhea of
health status of individual caregivers while, simultaneously
unknown cause and other chronic conditions (Feldman et al.
strengthening their feeling of social support. The available
2000, Abbeduto et al. 2004, Magana et al. 2006). Emotional
research evidence on support groups for caregivers of family
problems include depression (Olsson & Hwang 2001, Ab-
members with intellectual disabilities suggests that support
beduto et al. 2004, Singer 2006) and feelings of guilt, shame or
groups improve the adverse effects of care-giving stress.
anger, grief, powerlessness and disappointment (Morrison
However, the majority of investigations of support groups
2001, Baker et al. 2005, Nachshen & Minnes 2005). Socially,
have been conducted in western countries. Little is known
negative attitudes and opinions about intellectual disability
about how differences in the support group context influence
may cause caregivers and family members to feel ashamed and
either the nature of the social support available to caregivers
avoid contact with other people, leading to loss of social
of family member with intellectual disabilities or the effects
support, decreased social opportunities and recreational
on caregivers’ physical—psychological health in eastern
activities and social alienation (Chien et al. 2008).
cultures. Western research may not be generalisable to
caregiving experiences in eastern cultures. Therefore, in this
article, we extend our previous work (Chou et al. 2002) by The support groups for people caring for family members
exploring the effects of support groups on caregivers’ with intellectual disability
physical—psychological health (somatic, depressive and anx-
The support group is defined as ‘a type of mutual helping
iety symptoms) and social support (positive social interaction,
group that comprises a group of people and a leader to share
emotional, informational and material support).
and deal some common need’ (Nichols & Jenkinson 1991).
Studies have shown that support groups can provide impor-
Background tant resources to the family, including care information and
emotional and psychological support. Maximum assistance is
Intellectual disability
needed to help caregivers manage long-term personal and
According to the American Association on Intellectual Devel- family crises (Kaasalainen et al. 2000, Boyd 2002).
opment Disability (AAIDD 2002), intellectual disability has
several diagnostic criteria: (1) significant impairment in Effectiveness of support groups in improving caregivers’
intellectual functioning as indicated by a full scale score of physical—psychological health
75 or lower; (2) significant limitations in adaptive behaviour as The literature over the last decade on the effectiveness of
expressed in conceptual, social and practical adaptive skills; support groups in improving caregivers’ physical—psycho-
and (3) intellectual disability must be evident during logical health shows a significant improvement for those
the developmental period, which is from conception to receiving support group intervention (Dellasega & Haagen
18 years of age. Self-adaptive behaviours include self-care 2004, Shu & Lung 2005) and psychological health measured

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2 Journal of Clinical Nursing
Original article
by the average Hospital Anxiety and Depression Scale
(HADS) (Barlow et al. 2006, 2008).
Effectiveness of support groups for improving caregivers’
social support
The benefits of support groups for enhancing caregiver social
support are more controversial. Some studies have shown a
statistically significant improvement in social support (Chien
et al. 2008); the average Self Evaluation and Social Support
Schedule (SESS), while six months of follow-up showed that
the average Family Support Services Index (FSSI) score
increased from 3Æ79–4Æ01 (Chien et al. 2005). Other studies
showed slight improvements in social support that failed to
reach statistical significance: the average FSSI score rose from
3Æ64–4Æ3 to 3Æ79–4Æ5 (Szmukler et al. 2003); the average score
on the Social Support List (SSL) dropped from 74Æ9–74
(Castelein et al. 2008). Above literature supported that sup-
port group interventions could improve caregivers’ physi-
cal—psychological morbidity. Programs that involve the
people with intellectual disabilities and their families and are
more intensive and modified to caregivers’ needs may be
more successful (Brodaty et al. 2003).
Methods
Design
An experimental research, preintervention postintervention
control group design, was used in this study to investigate
changes in caregivers’ physical—psychological health and
social support after support group intervention. Data on
psychological health status and level of social support were
collected one week before the support group intervention,
after the conclusion of the support group intervention and at
follow-up four weeks later. The support group sessions were
held weekly for eight consecutive weeks, with each session
lasting 90 minutes.
Intervention
The professionally led support groups were structured. The
discussion components included: providing information,
problem solving, coping and support. The first session offered
(1) an introduction to the support group. The orientation
covered the group goals, objectives, rules, expected behav-
iours and ‘telling their stories’; (2) the 2nd–3rd sessions
involved discussing the caregivers’ emotions and feelings
toward caregiving; (3) the 4th–5th sessions consisted of
talking about the care-receivers’ self-adaptive and functional
adaptive behaviours to intellectual disability; (4) the sixth
 2012 Blackwell Publishing Ltd
Journal of Clinical Nursing
Support group of intellectually disabled family
session addressed taking care of oneself and doing positive
things with the care-receiver; (5) the seventh session provided
information about community resources and addressed
financial issues pertaining to intellectual disability, in-home
services and medical needs; (6) the final session was scheduled
to review the progress of the group and address future plans.
The quality of the intervention in each session was recorded
by the data collector. The as usual care (AUC) completed the
assessment instruments during the same weeks that the
treatment groups were tested.
Qualifications of the group leader
The group leader had previously worked with various groups,
including those dealing with personal growth, support, social
skills, emotion management and cognitive behavioural ther-
apy. The primary investigator provided the training and
protocol. The training consisted of 54 hours of didactic
training followed by the support group therapy manual.
Therapist adherence was monitored according to Young and
Beck’s coding system (Young & Beck 1980). Each tape was
then assessed by two external senior clinical experts with
postgraduate training in cognitive behavioural therapy, who
were independent of the therapy component of the system.
The system rated compliance with the fundamental principles
of cognitive behavioural therapy (collaboration, establishing
an agenda, setting homework) and adherence to one or more
modules and interventions specified in the treatment manual.
Participants
Potential subjects were recruited from families of people with
intellectual disabilities at the Chung-Hua Foundation for
Persons with Intellectual Disabilities, which covers three
rehabilitation institutions. Subjects were put through a
screening to assure that they are primary caregivers of family
members with a diagnosis of intellectual disability, according
to DSM-IV criteria. A pre-group interview was scheduled to
screen potential subjects for suitability, to gather contextual
and baseline information and to assure that they could enter
the study.
Subjects who met the following criteria were invited to
participate in the study. Primary caregivers were people: (1)
who were caring for a family member with intellectual
disability, (2) functioning as a caregiver for at least
12 months, prior to participating in the study and (3) residents
in the city and rural municipality of Taipei. Caregivers who
were currently providing care to another family member
(other than the people with intellectual disabilities) with a
chronic physical or mental illness were excluded from this
3
E-S Wei et al.

study. A total of 72 participants were enrolled in the study. Of
these, subjects were randomly assigned to experimental
groups by permuted block randomisation, each group con-
sisting of 12 people and 36 people serving as controls (AUC).
Participants were blinded to the arrangement. Four members
in the experimental group did not continue to participate and
the dropout rate was 11Æ1% (4/36). Six members in the control
group withdrew, and their dropout rate was 16Æ7% (6/36).
The reasons given for withdrawal included being too busy or
being occupied with other things (Fig. 1).
Data collection
Physical-psychological health status
The participants’ psychological health status was measured
using the Derogatis Symptoms Checklist-90-R (SCL-90-R)
(1977), which was translated into Chinese, consisting of 90
questions. Based on findings from mothers of people with
intellectual disabilities, Zheng (1987) edited the psychologi-
cal reaction section in the Chinese version into 35 questions.
The scale comprises three subscales: (1) somatic symptoms:
illnesses caused by body function disorders (12 questions); (2)
depressive symptoms: extensive signs of depression (13
questions); and (3) anxiety symptoms: clinically significant
signs of anxiety (10 questions). A five-point Likert scale
Assessed for eligibility
(n = 72)
Block
randomization
ranging from 0–4 was adopted. The total scores on the SCL-
90-R ranged from 0–140. According to Zheng (1987), the
internal consistency reliabilities of the three subscales with
Cronbach a were 0Æ89, 0Æ92 and 0Æ91 respectively. Inter-rater
agreement was above 0Æ90.
Social support
The level of social support was measured using the Inventory of
Socially Supportive Behaviors (ISSB) and a social support
questionnaire (Yang 1998). The questionnaire consisted of four
sections: emotional support, positive social interaction support,
informational support and material aid support. Of a total of 16
questions on this scale, a four-point Likert scale was adopted to
measure the level of support for each item. The total score
ranges from a minimum of 16 to a maximum of 64, with higher
scores representing more social support received. The Cron-
bach’s alpha of the ISSB was 0Æ93 (Barrera & Ainlay 1983).
Data processing and analysis
Data were analysed using SAS version 8.2 software (SAS
Institute Inc., Cary, NC, USA). The independent t test was
used for continuous variables and the chi-square test was
used for categorical variables. Generalised estimating equa-
tions (GEE) were used for longitudinal data analysis. The
GEE estimated the effects of support groups by entering the
related factors and controlling for the confounding variables.
Sample size was estimated by G-power. We specified
alpha = 0Æ05, power = 0Æ80 and the effect size equalled
0Æ30. A sample of 72 for three waves of data collection
(216 observation data) was adequate for this study.
Ethical considerations

The study protocol was approved by the Institutional Review

Experimental group (n = 36)
Session no. No. of participants
1 36
2 36
3 36
4 32
5 32
6 32
7
8
32
32
Board for the protection of human subjects at the consenting
hospital. The purpose, content, duration and the use of
Control group (n = 36) questionnaire data were explained to obtain participants’
Session no. No. of participants informed consent on signed forms in the preparation stage of
1 36
2 36 this study, to respect participants’ rights, interests and
3 36 anonymity.
4 30
5 30
6 30
7 30
8 30 Results

Background information

Analysed Analysed A total of 62 caregivers participated in this study: 48 women

(n = 32) (n = 30) (77Æ4%) and 14 men (22Æ6%). Thirty-seven people (59Æ7%)
were classified in Class V. The average age of the caregivers was
Figure 1 Flow of the study participants. 49Æ15 years (SD 8Æ68) and ranged from 32–66. Of the people

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4 Journal of Clinical Nursing
Original article Support group of intellectually disabled family

with intellectual disabilities themselves, 20 (32Æ3%) people
with mild or moderate intellectual disability, 25 (40Æ3%)
people with severe disability and 17 people (27Æ4%) with
extremely severe disability. The average age was 23Æ47 years
(SD 6Æ97) (Table 1). Analysis of variables in the experimental
and control groups showed no statistically significant differ-
ences between the two groups in terms of caregivers’ gender
(v2 = 1Æ83, p = 0Æ18), caregivers’ socioeconomic status
(v2 = 0Æ34, p = 0Æ84), or the people with intellectual disabilities
handicap index (v2 = 1Æ06, p = 0Æ79) (Table 1).
Therapist adherence
Inter-rater agreement was high for both factors rated.
Agreement between raters was present in 93% of the ratings
measuring adherence to the components of support group.
Similarly, both raters agreed 94% of the time that the
fundamentals of support group were clearly present.
Effectiveness of the support group intervention
Physical-psychological health
No difference in overall physical—psychological health was
observed between the two groups at baseline (t = 1Æ15,
p = 0Æ25). Analysis using the GEE model revealed a statisti-
cally significant change in physical—psychological health in
the experimental group after the intervention, indicating that
the support group intervention had immediate positive effects
on the participants (z = 5Æ24, p < 0Æ0001). The measure-
ment at follow-up also showed a statistically significant dif-
ference (z = 6Æ50, p < 0Æ0001), indicating that the
improvement in physical—psychological health persisted at
four-week follow-up (Table 2; Fig. 2).
On the somatic symptoms subscale, the GEE model
revealed a statistically significant difference in somatic
symptoms in the experimental group after the intervention,
indicating that the support group intervention had an
immediate positive effect on somatic symptoms (z = 2Æ93,
p = 0Æ0034). In addition, the measurement at four-week
follow-up showed a statistically significant difference, indi-
cating that the improvement in somatic symptoms persisted
beyond the endpoint of the support group intervention
(z = 5Æ26, p < 0Æ0001) (Table 2).
On the depressive symptoms subscale, analysis using the
GEE model to control for the baseline difference revealed
statistically significant change in depressive symptoms in the
experimental group after the intervention, showing that the
support group had an immediate positive effect on depressive

Table 1 Background information on participants

Experimental group
(n = 32) Control group (n = 30) Total (n = 62)

Variable Mean/number SD/% Mean/number SD/% Mean/number SD/% t/p or v2/p

Caregivers Mean SD t/p

Age (years) 50Æ60 6Æ61 48Æ17 10Æ49 49Æ15 8Æ68 2Æ98/0Æ09 (NS)
Gender Number % v2/p
Female 27 56Æ3 21 43Æ8 48 77Æ4 1Æ83/0Æ18 (NS)
Male 5 35Æ7 9 64Æ3 14 22Æ6
Socioeconomic status Number % v2/p
V 18 48Æ6 19 51Æ4 37 59Æ7 0Æ34/0Æ84 (NS)
IV 8 57Æ1 6 42Æ9 14 22Æ6
III 6 54Æ5 5 45Æ5 11 17Æ7
II 0 0Æ0 0 0Æ0 0 0Æ0
I 0 0Æ0 0 0Æ0 0 0Æ0
Patients Mean SD t/p

Age (years) 23Æ78 5Æ57 23Æ12 8Æ25 23Æ47 6Æ97 1Æ93/0Æ17 (NS)
Severity of disabilities Number % v2/p
Moderate or mild 9 45Æ0 11 55Æ0 20 32Æ3 1Æ06/0Æ79 (NS)
Severe 13 52Æ0 12 48Æ0 25 40Æ3
Very severe 10 58Æ8 7 41Æ2 17 27Æ4

Socioeconomic status = education level · 4 + occupation level · 7; there are five levels from I–V (highest to lowest) (LS Wang, National Taiwan
Normal University, Taipei, unpublished Masters thesis).
Age groups are defined according to Erikson’s scale of psychosocial development (young adults, 21–40 years; middle adulthood, 41–64 years;
seniors, 65 years and older).
NS, not significant.

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Journal of Clinical Nursing 5
E-S Wei et al.

Table 2 Generalised estimating equation analysis of longitudinal outcome variables: physical—psychological health status, somatic, depressive,
and anxiety symptoms subscales (n = 62)

Variable Regression coefficient Standard error z-value p-value

Physical-psychological health status (total scale)

Group (Exp.)* 6Æ05 5Æ27 1Æ15 0Æ2516
Time (2nd) 1Æ83 1Æ07 1Æ71 0Æ0866
Time (3rd) 2Æ33 0Æ97 2Æ40 0Æ0165
Group (Exp.) · Time (2nd) 8Æ11 1Æ55 5Æ24 <0Æ0001
Group (Exp.) · Time (3rd) 10Æ46 1Æ61 6Æ50 <0Æ0001
Somatic symptoms subscale
Group (Exp.)* 0Æ79 2Æ02 0Æ39 0Æ6971
Time (2nd) 1Æ13 0Æ57 2Æ01 0Æ0449
Time (3rd) 1Æ40 0Æ50 2Æ81 0Æ0049
Group (Exp.) · Time (2nd) 2Æ79 0Æ95 2Æ93 0Æ0034
Group (Exp.) · Time (3rd) 4Æ47 0Æ85 5Æ26 <0Æ0001
Depressive symptoms subscale
Group (Exp.)* 2Æ32 2Æ17 1Æ07 <0Æ0001
Time (2nd) 0Æ97 0Æ45 2Æ16 0Æ0311
Time (3rd) 0Æ70 0Æ54 1Æ30 0Æ1948
Group (Exp.) · Time (2nd) 3Æ09 0Æ71 4Æ34 <0Æ0001
Group (Exp.) · Time (3rd) 3Æ29 0Æ82 4Æ01 <0Æ0001
Anxiety symptoms subscale
Group (Exp.)* 2Æ93 1Æ65 1Æ78 0Æ0747
Time (2nd) 0Æ23 0Æ57 0Æ41 0Æ6797
Time (3rd) 0Æ17 0Æ59 0Æ28 0Æ7765
Group (Exp.) · Time (2nd) 2Æ27 0Æ70 3Æ23 0Æ0012
Group (Exp.) · Time (3rd) 2Æ85 0Æ89 3Æ21 0Æ0013

*Reference group: Control group.

Reference group: Time (1st).
Reference group: Group (Control) · Time (1st).

42 symptoms persisted through the four-week follow-up

Control group
Experimental group (z = 4Æ01, p < 0Æ0001) (Table 2).
Physical and psychological health

38 On the anxiety symptoms subscale, analysis using the GEE

model revealed a statistically significant change in anxiety
34
36·56 symptoms in the experimental group after the intervention
34·23 36·06
(z = 3Æ23, p = 0Æ0012). This result indicated that the sup-
30 27·73 port group had an immediate positive effect on anxiety
symptoms. Furthermore, measurements at follow-up showed
26 21·45 a statistically significant difference from before the interven-
19·60 tion (z = 3Æ21, p = 0Æ0013), indicating that the improve-
22 ments in anxiety symptoms persisted during the four-week
follow-up (Table 2).
18
Pre-intervention Post-intervention One month follow-up
Social support
Figure 2 Generalised estimating equation (GEE) analysis of longi- The average score of the experimental group was 17Æ81 (SD
tudinal outcome of physical—psychological health. Physical-psy- 9Æ63) and that of the control group was 19Æ03 (SD 9Æ69) at
chological health = 34Æ23 6Æ05 (group) + 1Æ83 [Time (2nd)] + 2Æ33 baseline (t = 0Æ51, p = 0Æ61). The results revealed a statis-
[Time (3rd)] 8Æ11 [Group (Exp.) · Time (2nd)] 10Æ46 [Group
tically significant change in social support in the experi-
(Exp.) · Time (3rd)].
mental group after the intervention (z = 4Æ91, p < 0Æ0001),
symptoms (z = 4Æ34, p < 0Æ0001). Furthermore, mea- suggesting that the support group intervention had an
surement at follow-up showed a statistically significant immediate positive effect on social support. In addition, the
difference, indicating that improvement in depressive measurements at follow-up showed a statistically significant

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6 Journal of Clinical Nursing
Original article Support group of intellectually disabled family

difference from before the intervention (z = 4Æ70,
p < 0Æ0001), indicating that the improvements in social
support persisted through the four-week follow-up
(Table 3).
On the emotional support subscale, analysis using the GEE
method revealed a statistically significant change in emo-
tional support in the experimental group after the interven-
tion (z = 3Æ38, p = 0Æ0007). The measurement at four-week
follow-up showed a statistically significant difference
(z = 3Æ27, p < 0Æ0011), indicating that the improvement in
emotional support persisted beyond the endpoint of the
intervention (Table 3).
On the positive social interaction support subscale, results
revealed a statistically significant difference in positive social
interaction in the experimental group after the intervention
(z = 2Æ25, p = 0Æ0125). The measurement at follow-up failed
to reach statistical significance (z = 1Æ90, p = 0Æ06), indicating
that the improvement in positive social interaction support
did not continue through the four-week follow-up (Table 3).
On the informational support scale, analysis using the GEE
method revealed a statistically significant change in informa-
tional support in the experimental group after the interven-
tion (z = 4Æ34, p < 0Æ0001). The postintervention
measurement taken at four-week follow-up showed a statis-
tically significant difference (z = 3Æ17, p = 0Æ0015), indicating
that the improvement in informational support persisted
beyond the endpoint of the group intervention (Table 3).
On the material aid support scale, the result revealed no
difference in material support between the two groups before
the intervention. Analysis using the GEE method revealed a
statistically significant change in material aid in the experi-
mental group after the intervention (z = 2Æ57, p = 0Æ01),
indicating that the support group intervention had an imme-
diate positive effect on material aid. The measurement taken at

Table 3 Generalised estimating equation analysis of longitudinal outcome variables: social support, emotional support, positive social inter-
action, information, and material aid subscales (n = 62)

Variable Regression coefficient Standard error z-value p-value

Social support (total scale)

Group (Exp.)* 1Æ22 2Æ42 0Æ51 0Æ6132
Time (2nd) 2Æ06 0Æ80 2Æ57 0Æ0102
Time (3rd) 2Æ23 0Æ72 3Æ12 0Æ0018
Group (Exp.) · Time (2nd) 5Æ47 1Æ11 4Æ91 <0Æ0001
Group (Exp.) · Time (3rd) 6Æ36 1Æ35 4Æ70 <0Æ0001
Emotional support subscale
Group (Exp.)* 0Æ31 0Æ74 0Æ42 0Æ6718
Time (2nd) 0Æ03 0Æ30 0Æ11 0Æ9115
Time (3rd) 0Æ00 0Æ36 0Æ00 1Æ0000
Group (Exp.) · Time (2nd) 1Æ44 0Æ43 3Æ38 0Æ0007
Group(Exp.) · Time (3rd) 1Æ66 0Æ51 3Æ27 0Æ0011
Positive social interaction support subscale
Group (Exp.)* 0Æ28 0Æ77 0Æ36 0Æ7198
Time (2nd) 0Æ67 0Æ31 2Æ10 0Æ0357
Time (3rd) 0Æ77 0Æ34 2Æ28 0Æ0223
Group (Exp.) · Time (2nd) 1Æ07 0Æ43 2Æ25 0Æ0125
Group (Exp.) · Time (3rd) 0Æ92 0Æ49 1Æ90 0Æ0574
Informational support subscale
Group (Exp.)* 0Æ29 0Æ65 0Æ44 0Æ6584
Time (2nd) 0Æ67 0Æ30 2Æ20 0Æ0278
Time (3rd) 0Æ37 0Æ26 1Æ43 0Æ1520
Group (Exp.) · Time (2nd) 1Æ76 0Æ40 4Æ34 <0Æ0001
Group (Exp.) · Time (3rd) 1Æ55 0Æ49 3Æ17 0Æ0015
Material aid support subscale
Group (Exp.)* 0Æ37 0Æ65 0Æ57 0Æ5680
Time (2nd) 0Æ70 0Æ38 1Æ84 0Æ0658
Time (3rd) 1Æ10 0Æ32 3Æ43 0Æ0006
Group (Exp.) · Time (2nd) 1Æ23 0Æ48 2Æ57 0Æ0100
Group (Exp.) · Time (3rd) 2Æ26 0Æ54 4Æ17 <0Æ0001

*Reference group: Control group.


Reference group: Time (1st).

Reference group: Group (Control) · Time (1st).

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Journal of Clinical Nursing 7
E-S Wei et al.
postintervention follow-up showed the improvement persisted
at four-week follow-up (z = 4Æ17, p < 0Æ0001) (Table 3).
Discussion
The discussion components in the support group included
several components: information, problem solving, coping
and support. These interventions were provided to caregivers
in a support group modality. The informational component
was designed to help caregivers’ acquire knowledge about the
disease process and about the patient behaviour. The prob-
lem-solving intervention focused on what caregivers could do
to reduce or eliminate patient disruptive behaviours and how
the caregivers can meet their personal needs. Coping was
aimed at manipulating the stressful situation by changing
their own behaviour or regulating the emotions engendered
by the situation. Support involved the sharing of feelings, the
exchange of problem-solving strategies and the validating of
experiences among the group members.
In this study, the structure and process of the support
group allowed patients to share their views on the positive
and negative aspects of their lives, as well as offering health
education about the causes and clinical manifestations of
intellectual disability to answer group members’ questions
and reduce their feelings of guilt and shame. Group members
were encouraged to share their experiences of child-rearing,
which varied according to the level of patient intellectual
disabilities. This allowed group members to understand
different experiences of caregiving and forms of related stress
and encouraging them to be inspired by other group
members’ achievements in caregiving.
Characteristics of caregivers
The majority of the participants in this study were middle-
aged women, as is also the case in many other studies of
caregivers (Cook & Solomon 1993, Chou et al. 2002). This
demonstrates that women in families must often develop the
ability to handle intense pressure and solve problems related
to family development and changes. These caregivers have a
great need for relevant social resources. The dropout rate in
this study was consistent with other studies of support groups
both at home and abroad (Cook & Solomon 1993, Chou
et al. 2002). The most common reason for dropping out was
being busy and family needs.
Effects on physical—psychological health
Both, in terms of physical—psychological health status as a
whole and in terms of somatic symptom subscales, depressive
8 Journal of Clinical Nursing
symptoms and anxiety symptoms, study participants who
received the support group intervention did significantly better
than those who did not. Generally speaking, caregivers
suffered from preexisting health problems precipitated by the
pressure of caregiving. This finding is consistent with those of
previous studies on the physical—psychological health of
caregivers (Seideman & Kleine 1995, Barlow et al. 2006, 2008).
With respect to somatic symptoms, caregivers’ complained
of long-term sleep deprivation, mental stress, anxiety, head-
ache, hypertension, arthritis, allergies and exhaustion. The
support group was to provide its members with opportunities
to share their experiences of caregiving stress, to generalise
about the problems and to understand the effects of the stress
on their health. The support group members were encouraged
to share information related to physical—psychological
health, including medical news, diet and nutrition, recrea-
tional sports, travel tips and charity events, as well as the
effects of morning exercises, sports and meditation. Health
education on psychosomatic illness and stress management
was also offered to relieve group members’ somatic symptoms.
Regarding depressive symptoms, caregivers reported often
feeling depressed, guilty and ashamed. For some, beliefs
about karma contributed to their sense of guilt by making
them feel their misfortune was a consequence of actions in
previous lives. Furthermore, they felt their lives were bound
by their commitment to the people with intellectual disabil-
ities. These findings are consistent with those of previous
studies on caregivers’ emotional reactions (Gelder et al.
1996, Barlow et al. 2006, 2008). In this study, the structure
and process of the support group allowed people with
intellectual disabilities to share their views on the positive and
negative aspects of their lives, as well as offering health
education about the causes and clinical manifestations of
intellectual disability to answer group members’ questions
and reduce their feelings of guilt and shame. Group members
were encouraged to share their experiences of child-rearing,
which varied according to the level of intellectual disability
and gender. This allowed group members to understand
different experiences of caregiving and forms of related stress,
with the goal of reducing their sense of self-pity and isolation
and encouraging them to be inspired by other group
members’ achievements in caregiving and child-rearing. In
addition, group members were taught to make use of various
support systems, such as family, schools, institutions and
social resources, to reduce their stress.
Regarding anxiety symptoms, caregivers worried about
their health and lacked confidence in their ability to fulfil their
caregiving tasks and they were concerned about the future. In
some cases, they feared that the people with intellectual
disabilities would get lost, have an accident or die. This finding
 2012 Blackwell Publishing Ltd
Original article
is consistent with those of previous studies on anxiety
reactions in caregivers (Barlow et al. 2006, 2008). The
support group intervention in this study offered health
education related to the issues raised by group members,
including the treatment and prognosis of seizures, evaluation
and development of adaptive and functional behaviours,
handling problematic behaviours and services provided by
medical institutions to reduce members’ sense of uncertainty.
In addition, through sharing their experiences, group members
were able to readjust their moods and develop adaptive skills,
such as putting a decorative necklace on the people with
intellectual disabilities to prevent getting lost, training the
people with intellectual disabilities to take a bus, training the
people with intellectual disabilities to shop at certain stores,
teaching the people with intellectual disabilities to meet his or
her own needs and helping store owners understand their
behaviours. With regard to relaxation techniques, group
members discussed and shared the effects of meditation, doing
housework, going shopping and praying. In situations where
their condition was complicated by other disabilities, such as
language disorders, mental disorder, or autism, group mem-
bers were encouraged to understand the limits of their own
abilities and the need for expert assistance. Various counsel-
ling opportunities were presented to help reduce group
members’ feelings of isolation and helplessness.
Generally speaking, the support group intervention is
effective in reducing somatic symptoms, depressive symptoms
and anxiety symptoms, i.e. in improving psychological health
status as a whole. At the initial stage, it helps members to
share their caregiving experiences and relieve stress. In the
middle stage, it helps members review their own psycholog-
ical health status and learn about beneficial resources. In the
final stage, it provides information about social welfare
resources and coping with physical illness, as well as reducing
long-term depression and anxiety. Group discussions allowed
members to assess their situations and share their thoughts
and feelings with others. Emphasis on altruism and the
importance of their caregiver role helped reduce their feelings
of self-pity, loneliness and shame in the support group.
Through practical suggestions, group sessions help members
emerge from self-imposed isolation and improve their ability
to care for other family members. As a result, not only does
the group intervention itself mitigate somatic, depressive and
anxiety symptoms, but these positive effects continue after
the conclusion of the intervention.
Effects on social support
Group intervention significantly improved all aspects of
social support in the experimental group and these effects
 2012 Blackwell Publishing Ltd
Journal of Clinical Nursing
Support group of intellectually disabled family
persisted at postintervention follow-up. These findings are
consistent with those of previous studies (Langford et al.
1997, Szmukler et al. 2003, Castelein et al. 2008). Thus the
support group intervention improves social support as a
whole, including emotional, positive social interaction,
informational and material aid aspects.
With regard to emotional support, caregivers expressed the
need to be cared about, trusted, listened to and appreciated
by family, friends and significant others. Some group mem-
bers shared their stories: in the past, because of their family
member’s condition, they were chronically disheartened,
ashamed and gloomy. They could not face other people and
declined chances to socialise with relatives and friends. Other
group members sympathised with their emotional conflicts
and inhibitions and provided continued appreciation for their
achievements. The support group atmosphere promotes
closeness and trust among group members, who benefit from
feeling listened to and respected and receiving needed
appreciation and support. In addition, group members’
feelings and attitudes undergo change, with participants
acquiring a sense of being cared about, and a sense of
achievement in providing people with intellectual disabilities
care. Furthermore, the group interaction increases members’
perception of emotional support from other sources.
Regarding support in the form of positive social interac-
tion, to confirm their own interaction and ideas, caregivers
require affirmation and feedback from family, friends and
significant others. The varying feelings and experiences
conveyed by other members of the support group allow
participant to view situations from different perspectives. By
observing the stability and positive changes in his or her own
family and in society as a whole, a participant can understand
his or her personal positive social contribution. However,
support in the form of positive social interaction requires
relatively homogeneous interaction and comparison among
caregivers over a long period of time. Although the support
group intervention provides ample opportunities for interac-
tion, the continuation of positive social support of this kind
after the intervention may require a long-term significant-
other relationship. This may explain why the improvement in
positive social interaction support was not statistically
significant at postintervention four-week follow-up in our
study.
Regarding informational support, caregivers need family,
friends, or significant others to offer suggestions, guidance
and related knowledge, especially tips to lessen the uncer-
tainty of caregiving. The structure and process of the support
group provides valuable information about personal psycho-
logical health and providing care for people with intellectual
disabilities. Moreover, the group interaction promotes the
9
E-S Wei et al.

transmission of information about raising family members,
daily living needs, physical—psychological health, stress
management and social and medical resources.
With respect to material aid, caregivers need family and
others to provide assistance in terms of money, labour, or
time. The support group allows caregivers to share strategies
for obtaining assistance from various support systems,
including family, schools and other institutions. For example,
siblings can get involved in housekeeping and their care and
family members who live close by can take turns providing
transportation for the people with intellectual disabilities.
The institution can also help train the people with intellectual
disabilities in self-care. In addition, information can be
shared about available social welfare resources and rights,
such as tax deductions. Many members of the experimental
group reported that they had gained much information from
the intervention, including the opportunity to learn about
resources that they had not yet used that could reduce the
economic burden on their families. In summary, the results
indicated support for caregivers of family members with
intellectual disabilities was a valued form of social support.
Caregiver support group programs have broad effects,
enhancing most dimensions of social support.
psychological health and social support during and after
participating in a support group.
The current study included subjects from only three
rehabilitation institutions who were deliberately sampled to
represent homogeneity with respect to the geographical
region. There are some questions about external validity,
generalising the results to a broad population of family
caregivers of relatives with intellectual disabilities. Future
studies with larger sample sizes and long-term follow-up are
recommended. It is hoped the results of this study will be
meaningful for researchers investigating caregivers of people
with intellectual disabilities, clinicians who provide services
and policymakers who propose beneficial legislation.
Relevance to clinical practice
The support group is an effective intervention to promoting
caregivers’ physical—psychological health status as well as
their social support. Therefore, the support group should
become a routine component of the caregiver of people with
intellectual disabilities in nursing care. Nursing personnel can
prepare themselves to be leaders of such groups by taking
related courses and acquiring in-service education.

Conclusions
This study showed that support groups have positive effects
on caregivers of people with intellectual disabilities, improv-
ing their psychological health and social support. The support
group provided a sense of having something in common with
others, validation of the caregivers’ experiences and oppor-
tunities to give and receive help. In summary, this study
employed rigorous controls and used valid and reliable
instruments for measuring longitudinal effects on caregivers’
Contributions
Study design: ESW, HC, KRC; data collection and analysis:
KRC and manuscript preparation: ESW, HC, CHC, YJH,
YSC, LIC, KRC.
Conflict of interests
No conflict of interest was stated during the study process.

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