Relationships between Sense of Coherence, Coping Strategies and Quality of Life of Parents of Children with Autism in Malaysia: A Case Study among Chinese Parents

Abstract

Purpose: This study aimed to examine the relationships between Sense of Coherence (SoC), Coping Strategies and Quality of Life (QoL) of parents of children with autism in Malaysia.
Method: Purposive sampling was used to recruit parents of children with autism from 3 Autism Centres run by NGOs. The parents were asked to complete a questionnaire.
Results: The results of the study show that SoC and cognitive reframing are important factors that are associated with QoL.
Conclusions: It is recommended that policy-makers and programmers at the Autism Centres conduct more training workshops for parents of children with Autism Spectrum Disorder (ASD), so that their overall QoL can be improved.
Limitations: Future studies could recruit more participants, especially parents at government centr

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Relationships between Sense of Coherence, Coping
Strategies and Quality of Life of Parents of Children with
Autism in Malaysia: A Study of Chinese Parents
P.C. Siah1, S.H. Tan2
1. Department of Psychology and Counseling, Universiti Tunku Abdul Rahman, Malaysia
2. Faculty of Education, Universiti Teknologi Malaysia, Malaysia
* Corresponding Author: Associate Professor, Department of Psychology and Counselling, Universiti Tunku Abdul
Rahman, Malaysia. Email:siahpc@gmail.com
ABSTRACT
Purpose: This study aimed to examine the relationships between Sense of
Coherence (SoC), Coping Strategies and Quality of Life (QoL) of parents of
children with autism in Malaysia.
Method: Purposive sampling was used to recruit parents of children with autism
from 3 Autism Centres run by NGOs. The parents were asked to complete a
questionnaire.
Results: The results of the study show that SoC and cognitive reframing are
important factors that are associated with QoL.
Conclusions: It is recommended that policy-makers and programmers at the
Autism Centres conduct more training workshops for parents of children with
Autism Spectrum Disorder (ASD), so that their overall QoL can be improved.
Limitations: Future studies could recruit more participants, especially parents
at government centres.
Key words: Autism Centres, cognitive reframing, Brief COPE, WHOQoL.
INTRODUCTION
Autism Spectrum Disorder (ASD) is regarded as a spectrum of neurodevelopmental
disorders (Jobe & White, 2007), since it includes clinical diagnosis of Autistic
Disorder, Asperger’s Syndrome and Pervasive Development Disorder – Not
Otherwise Specied (Volker & Lopata, 2008; Berg & Plioplys, 2012). The major
features of ASD include qualitative impairment in reciprocal social interactions,
paerns of communication, and repetitive interests and activities which usually
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present at the age of three (Volker & Lopata, 2008; Berg & Plioplys, 2012).
Nonetheless, the etiology of ASD is still not clear and, as of today, there is still
no cure for this disorder. Consequently, ASD is regarded as a lifelong condition
(Elder & D’alessandro, 2009).
The prevalence rate of ASD has been increasing dramatically over the past two
decades, which may be due to change of diagnostic criteria, policy and practice
changes, and greater awareness of the disorder (Levy et al, 2009; McPartland et
al, 2012). It is estimated that about 1 in 110 children have been diagnosed with
ASD, and more males have been diagnosed than females, with the sex ratio being
about 4 males:1 female (Giarelli et al, 2010). Nonetheless, ASD has been found
across the socioeconomic continuum, and in all racial and ethnic groups (Bartley,
2006).
ASD is the fastest growing disorder in Malaysia. It is estimated that there are
approximately 12,800 cases of autism, and 1 out of every 600 children in Malaysia
is aected by ASD (Malaysian Psychiatric Association, 2010; Meadan et al,
2010; Sin Chew Daily, 2012). Since taking care of a child with ASD is a lifelong
endeavour (Seler et al, 2004; Meirsschaut et al, 2010 ), parents of children with
autism, especially the mothers, have been found to have higher prevalence of
stress, psychological disturbances and depression (Azlina Wati Nikmat et al,
2008; Athari et al, 2013). These parents are also more likely to develop mental
issues, depression, somatic complaints, feelings of social isolation and burnout
(Hastings et al, 2007; Carter et al, 2009; Sipos et al, 2012).
Moreover, parents of children with ASD tend to experience marital strain and
disrupted family life due to their children’s challenging behaviour, as well as
fewer opportunities to engage with their communities (Allik et al, 2006; Myers
et al, 2009). These parents are nearly twice as likely to divorce as compared to
parents who do not have a child with autism, due to poor family functioning
and less marital happiness (Higgins et al, 2005; Hartley et al, 2010; Gau et al,
2012). Overall, the quality of life (QoL) of parents of children with autism is poor
(Yamada et al, 2012).
QoL is an important measure for guiding health care (Collins et al, 1991), since it
is a multidimensional concept that cannot be simply equated with health status,
lifestyle, life satisfaction, mental state, or well-being (The WHOQOL Group,
1998). The World Health Organisation (1997) has dened QoL as the “individuals’
perceptions in the context of their culture and value systems, and their personal
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goals, standards and concerns. It is a broad ranging concept aected in a complex
way by the person’s physical health, psychological state, level of independence,
social relationships, personal beliefs and their relationship to salient features of
their environment”.
Nonetheless, a beer QoL was found among those parents who had a higher
Sense of Coherence (SoC) (Olsson & Hwang, 2002). From the salutogenetic
perspective, Antonovsky (1987) claimed that one can foresee the consequences of
a specic stressor on an individual’s health by understanding a person’s view of
herself / himself and the world. In other words, through the resistant resources
or the factors that contribute to the development of SoC, one can understand the
stressors and thus create a strong SoC (Volanen et al, 2004). SoC has been dened
as - Global orientation that expresses the extent to which one has a pervasive,
enduring though dynamic feeling of condence that: (1) the stimuli deriving from
one’s internal and external environments in the course of living are structured,
predictable, and explicable (comprehensibility), (2) the resources are available
to meet the demands posed by these stimuli (manageability), (3) these demands
are challenges, worthy of investment and engagement and that life makes sense
emotionally (meaningfulness) (Antonovsky, 1987). In other words, the three
components of SoC are comprehensibility, manageability and meaningfulness
(Mak et al, 2007; Pozo et al, 2011).
Comprehensibility is relevant to parents’ information needs, such as their child’s
condition, the services available to them, and parents’ accounts of their experiences
(Oelofsen & Richardson, 2006). Meaningfulness involves a sense of worth in
facing the challenges (Beresford, 1996; Olsson & Hwang, 2002). Manageability
refers to the ability or the feeling that one will be able to obtain the necessary
resources to handle situational demands (Pozo et al, 2011).
A person with a strong SoC would be able to foresee the consequences of a
specic stressor on an individual’s health (Antonovsky, 1987; Volanen et al,
2004). Parents who have a strong sense of meaningfulness view parenting their
child with ASD as an enjoyable challenge, and have feelings of reward, pleasure
of parenthood and a sense of moral responsibility (Beresford, 1996; Olsson &
Hwang, 2002). Parents who have a strong sense of manageability would be able to
access resources to assist them in handling behaviour problems of their children,
and receive help and support from their spouse and from service centres (Bristol
et al, 1993; Beresford, 1996).
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Apart from the positive impact of a strong SoC, proper coping strategies are
also found to assist parents of children with ASD to overcome their challenges
(Paster et al, 2009). Lazarus and Folkman (1984) dened coping as “constantly
changing cognitive and behavioural eorts in order to manage specic external
and/or internal demands that are appraised as taxing or exceeding the resources
of the person”. By using exploratory factor analysis, Benson (2010) extracted 4
factors from the 14 theoretically derived subscales of the Brief COPE, which were
engagement, distraction, disengagement and cognitive reframing. Engagement
is related to the individuals’ active involvement in addressing the stressful
situations posed by their children with autism. Distraction includes strategies to
distract oneself from the stressors. Disengagement is relevant to the aempts to
deny or distance oneself from the situation. Lastly, cognitive reframing is relevant
to the eorts to positively restructure or reframe beliefs about the stresses.
The coping strategies parents used to deal with their child’s autism included
support from family and friends, joining support groups, connecting with other
parents of children with autism, the use of service providers, advocacy and support
groups and religion (DeMeyer, 1979; Gray, 2003; Hall & Gra, 2010). Studies also
found signicant associations between greater use of active-avoidance coping
strategies with higher levels of depression, stress, and parenting stress (Paynter
et al, 2013).
Studies have shown that those who apply positive coping strategies more frequently
and resort to avoidance less frequently are people with a high level of SoC as they
usually perceive stressors as positive challenges. In contrast, people who are more
likely to use avoidance strategies to cope with the diculties are those with a
low level of SoC, as they usually perceive dicult situations as threats (Olsson &
Hwang, 2002; Dakabrowska, 2008; Pisula & Kossakowska, 2010).
Objective
Review of literature by the author indicates that no study has explored the
relationships between SoC, coping strategies and QoL of parents of children with
ASD, especially in Malaysia.
This study therefore aimed to examine:
1. What is the relationship between SoC, coping strategies and QoL?
2. Whether SoC and coping strategies are associated with the QoL of parents of
children with ASD in Malaysia?
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The results of this study will provide information to policy-makers and NGO
programmers, so that they can take these factors into consideration when
planning strategies or programmes to improve the QoL of parents of children
with ASD in Malaysia.
METHOD
This study was conducted at three Non-Governmental Organisations (NGOs)
that provide services to children with ASD in Malaysia. Approvals were obtained
from the person in charge of conducting the study at each organisation.
Procedure
Purposive sampling method was used to recruit participants who had a child or
children with ASD. Special education teachers or instructors at the three NGOs
distributed the questionnaires after they were briefed on the procedure for
administering the survey. They were instructed to distribute the questionnaires
to those who had given their wrien informed consent. Participants were allowed
to answer the questionnaire either at home or at the organisation. A handmade
soap purchased from a disability centre was given to those who completed and
returned the questionnaires.
Participants
Of the 100 parents who were recruited, 96 returned the questionnaires. The nal
sample was 92 parents. Among the participants, 95.8% were Malaysian Chinese,
93% were married, 89.6% followed a religion, 75% were females, 58.3% were
below 45 years of age, 46.9% had a full or part-time job, 41.9% had a monthly
income above 4000 ringgits, and 39.6% had above secondary level education (see
Table 1). Since most of the participants were Malaysian Chinese, only their data
was included in data analyses to avoid over generalisation of the results.
Questionnaire
The questionnaire contained the following sections: demographic information,
WHOQoL-BREF, SoC scale and Brief COPE.
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Table 1: Demographic Background of Parents of Children with ASD (n = 96)
Age Below 45 58.3% Highest
education
Secondary or
below
49%
45 or above 41.7% Above
secondary
39.6%
Gender Male 25% Marital status
Married 93%
Female 75% Others 7%
Ethnic Chinese 95.8% Employment
Full or part time 46.9%
Malay or Indian 4.2% Housewife or
retired
53.1%
Religion Buddhism 57.29% Monthly
household
income
RM4000 or below 58.1%
Christianity 20.83% Above
RM4000
41.9%
Others 12.5%
No 10.42%
WHOQoL-BREF
The WHOQoL-BREF instrument contains 26 items categorised into four subscales:
physical health, psychological health, social relationships, and environmental
factor domains. There are four types of 5-point Likert interval scales in which the
participants were asked to express ‘how much’, ‘how completely’, how often’,
‘how good’ or ‘how satised’ they felt for each item in the last two weeks. The
scoring guideline was followed; rst, the three negatively phrased items were re-
coded, and then the scores of each subscale were transformed on a scale from 0
-100 for comparison purposes (The WHOQOL Group, 1998).
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SoC
SoC contains 13 items, of which 4 items are reverse scale. Participants were
required to circle a number from 1- 7 to indicate the strength of their feelings
toward each item; a higher score indicated a stronger SoC (Antonovsky, 1987,
1993). The internal reliability of the scale in this study is 0.772. Antonovsky (1993)
suggested using one factor to explain the structure of the scale. The average score
of these 13 items was thus used to indicate the levels of SoC among participants.
A higher score indicates a beer SoC.
Brief COPE
Brief COPE has 28 items (Carver, 1997). Eight items were used to measure
“engagement”, 8 items measured “distraction”, 6 items measured
“disengagement”, and 6 items measured “cognitive reframing”, as suggested
by Benson (2010). Internal reliabilities for Brief COPE in this study were 0.73,
0.65, 0.76 and 0.67, in order. Respondents were required to rate each item on a
4-point Likert scale (1= I haven’t been doing this at all, to 4= I have been doing
this a lot) depending on how frequently they employ 28 dierent behaviours
and cognitions when coping with a specic stressful situation. A higher score
indicated more consistent use of the coping strategies.
RESULTS
Relationships between SoC, Coping strategies and QoL
The Pearson correlation was used to examine the relationships between SoC,
coping strategies and QoL (see Table 2). The results showed that SoC was
signicantly correlated with all 4 domains of QoL, and was negatively correlated
with the 2 coping strategies: distraction and disengagement. Disengagement
was negatively correlated with psychological health but cognitive reframing was
positively correlated with psychological health. Disengagement and distraction
were negatively correlated with both the social relationship and environmental
factors.
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Table 2: Results of Pearson Correlations between SoC, Coping strategies and
WHOQoL (n = 92)
Coping SoC Coping
Engage-
ment
Distra-
ction
Disengage-
ment
Cognitive
reframing
Engagement -0.104
Distraction -.477***
Disengagement -.427***
Cognitive reframing -0.004
QoL
Physical health 0.397*** -0.132 -0.150 -0.179 0.084
Psychological health 0.550*** 0.149 -0.178 -0.204* 0.311**
Social relationships 0.501*** 0.037 -0.229* -0.244* 0.081
Environmental
factors
0.598*** 0.094 -0.190* -0.317** 0.187
Total QoL 0.590***
Note: * p < 0.05 ** p < 0.01 *** p < 0.001
Multiple Regressions of SoC, Coping strategies and Demographic factors on
QoL
Since total QoL is positively correlated with the all 4 domains of QoL, hierarchical
multiple regression programmes were then used to examine the relationships
between SoC, coping strategies and demographic factors on total QoL of parents
of children with ASD. The results are shown in Table 3. In the rst model, only
SoC was entered by using enter method. The results showed that the rst model
is signicant and explained 34.6% of total variance, F (1, 87) =45.95, p <0.001. SoC
was signicantly associated with total QoL, β = 0.588, t = 6.78, p < 0.001. In the
second model, the 4 coping strategies were entered by using stepwise method
for the selection of signicant coping strategies. The results showed that the
second model is signicant and explained 38.4% of total variance, F (2, 86) =26.75,
p <0.001. SoC was still signicantly associated with total QoL, β = 0.589, t =6.96,
p < 0.001, but only cognitive reframing was included as a signicant predictor,
β =0.195, t = 2.31, p = 0.024. In the third model, using the stepwise method 5
demographic factors were entered, which are age, gender, employment status
(employed vs. unemployed or housewife), highest education (secondary or below
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vs. above secondary) and monthly income (RM4000 or below vs. above RM4000).
However, none of these background factors were accepted in the model.
Table 3: Multiple Regressions of SoC, Coping Strategies and Demographic
Factors on total QoL
Models
1 2
Predictors β B
SoC 0.588*** 0.589***
Coping styles
Cognitive reframing 0.195*
F45.95*** 26.75***
df 1, 87 2, 86
R2 0.346 0.384
R2 change 0.038*
Notes: The coefcients shown are standardised betas.
* p < 0.05 ** p < 0.01 *** p < 0.001
DISCUSSION
Studies have shown that most parents of children with ASD face more stress
and have a poorer QoL than other parents. However, some parents who have a
beer SoC or have employed appropriate coping strategies are found to be able to
maintain or even improve their QoL. This study, therefore, aimed to examine the
relationships between SoC, coping strategies and QoL among parents of children
with ASD. To the author’s knowledge, no study has explored the relationships
of these 3 variables among parents of children with ASD, especially in Malaysia.
Firstly, the SoC is associated not only with psychological health, but also with
the QoL of physical health, social relationships and environment. In other words,
it is suggested that SoC is an important factor that is associated with dierent
dimensions of QoL among these parents of children with ASD. These results
support the conclusion that SoC is an important health promoting resource that is
able to develop a positive subjective state of health (Eriksson & Lindström, 2005).
Importantly, this conclusion can also be generalised to the parents of children
with ASD in Malaysia.
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Besides SoC, dierent coping strategies were also relevant to dierent domains of
QoL, except for the engagement coping strategy. Nonetheless, while puing all
these coping strategies in to the regression model for predicting total QoL, only
cognitive reframing emerged as a signicant predictor. The results suggested
that parents of children with ASD who have a good overall QoL are those who
have a strong SoC and use more cognitive reframing strategies. The results of
regression in model 3 suggested that these relationships were not relevant to
their demographic backgrounds.
CONCLUSION
Based on the ndings, it is suggested that policy-makers and programmers at
NGOs conduct more workshops to train parents of children with ASD to improve
their SoC and to encourage their use of cognitive reframing coping strategies. This
will help improve the overall QoL of those who have poor QoL. Future studies
could consider recruiting a larger number of participants, especially parents
at government centres, since this study sample consisted mainly of those who
could aord the service charges of the non-government related autism centres.
Future studies could also consider recruiting more participants from other ethnic
backgrounds, such as Malays and Indians, so that more comparisons can be
made.
Since purposive sampling was used, the ndings of this study may be generalised
with caution to parents who send their children to government centres where
the charges are low, and also to all Chinese parents of children with autism in
Malaysia.
ACKNOWLEDGEMENT
The author would like to thank Mr Koh Guan Hoe, Ms Annie Liew Wei Fun,
Ms Chan Ruenn Peng and Ms Khor Soo Nee for allowing us access to the group
of parents of children with ASD and recruiting them as the participants.
FUNDING
This study is sponsored by Fundamental Research Grant Scheme (FRGS) of
Malaysia Ministry of Higher Education (FRGS/1/2012/SS02/UTAR/02/01).
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