Parenting An Autism Child

O R I G I N A L P A P E R

Logging On: Evaluating an Online Support Group for Parents of Children with Autism Spectrum Disorders

Tessen Clifford • Patricia Minnes

Published online: 10 November 2012

� Springer Science+Business Media New York 2012

Abstract Twenty mothers participated in an online sup-

port group for parents of children with autism spectrum

disorders. Twenty-five unrelated parents participated in a

no-treatment control group. The participants completed

online questionnaires prior to and following the 4-month

support group, to evaluate changes in mood, anxiety, par-

enting stress, and positive perceptions. No significant dif-

ferences between the groups or across time were found.

However, parents who participated in the group reported

being satisfied with the support they received and finding

the group helpful. Issues related to participant recruitment

and retention are discussed. Further research is required to

investigate the efficacy of online support groups for parents

of children with ASD.

Keywords Autism � Parents � Support groups � Internet � Online � Well-being

Introduction

Parenting a child with a developmental disability can be a

stressful experience. Research shows that in this population

the presence of more child behaviour problems is related to

increased parental stress (Baker et al. 2003). Children with

autism spectrum disorders (ASD) tend to experience more

behaviour problems than children with other developmental

disabilities, and thus, research shows that parents of children

with ASD experience more stress than other parents

(Blacher and McIntyre 2006; Dabrowska and Pisula 2010;

Eisenhower et al. 2005; Lecavalier et al. 2006). Many

behaviours associated with ASD, such as self-injury and

some repetitive behaviours, are especially frustrating and

upsetting for parents and are associated with daily stress

(Bitsika and Sharpley 2004). Furthermore, parents of chil-

dren with ASD report more symptoms of anxiety and

depression compared to parents of children with other dis-

abilities (Hamlyn-Wright et al. 2007) and parents of typi-

cally developing children, with the negative effects being

especially strong for those parents who do not have support

from family members who understand their child’s disability

(Sharpley et al. 1997).

Despite the large amount of research indicating that

parenting a child with ASD is extremely stressful, little

research has examined methods of alleviating parental

stress for these families. Parent support groups (PSGs) are

one way to help parents of children with ASD cope with

their stress, meet other parents, and develop a sense of

belonging. Support groups for parents are a relatively cost-

effective and easily-implemented intervention for sup-

porting the needs of these families (Smith et al. 1994). Few

studies have reported rates of support group use in parents

of children with ASD or other disabilities; however,

Mandell and Salzer (2007) found that two-thirds of parents

of children with ASD report having used PSGs at some

point, and in another study, we found that 75 % of parents

of children with ASD reported using a PSG at some time

(Clifford 2011). In addition, 42 % of a sample of parents of

children with chronic illness living in households earning

under $40,000 annually reported using PSGs (Smith et al.

1994). It is important to note that there is a natural response

bias in these studies, such that parents who do not use PSGs

T. Clifford (&) Pathways for Children and Youth, 1201 Division St., Suite 215,

Kingston, ON K7K 6X4, Canada

e-mail: [email protected]

P. Minnes

Department of Psychology, Queen’s University,

Kingston, ON, Canada

123

J Autism Dev Disord (2013) 43:1662–1675

DOI 10.1007/s10803-012-1714-6

are unlikely to participate in studies of PSGs; therefore, it

is difficult to know the true rate of PSG use. Clinically,

parents report accessing support groups for free on the

internet, by invitation from other parents or from agency

staff who are aware of community groups, and as part of

the services offered while their child is on a wait-list for

government-funded intervention. Given the apparent pop-

ularity of PSGs for parents of children with ASD, sur-

prisingly little research has evaluated these interventions.

The Stress Buffering Model

The Stress Buffering Model (SBM; Cohen and Wills 1985)

suggests that support moderates (or buffers) the effect of

stressors on well-being (Cohen and Wills 1985). Specifi-

cally, in the presence of support, it is thought that stressors

have less impact on psychological well-being (i.e., stress,

mood, and positive perceptions of one’s child). The SBM

was used as a framework for this study (Fig. 1) due to its

simplicity compared to other models of stress in describing

the relationship between stressors, well-being, and support

in a clinically relevant way. Previous research with this

model has found mixed results; however, the validity of the

model is increased when the specific stressors measured

have been found to affect the specific measure of well-

being and the support is deemed helpful (Vaux 1988). The

SBM was used to investigate the role of online support

group involvement in (a) decreasing stress and negative

mood and (b) increasing positive perceptions in parents of

children with ASD.

Parent Support Groups and Well-Being

Studies have investigated the effects of support groups on

the well-being of participants, and in general, findings

indicate that support groups tend to have positive effects

(e.g., Preyde and Ardal 2003; Singer et al. 1999; Solomon

et al. 2001). Mothers of pre-term infants who participated

in support groups reported less stress and negative mood

than those who did not participate in the support group

(Preyde and Ardal 2003). Research with parents of children

with developmental disabilities found statistically signifi-

cant positive changes in parents’ reported perceptions of

their child with a disability following PSG involvement

that were not observed in the control group (Singer et al.

1999). When asked about their experiences in support

groups, parents of children with disabilities reported an

increased sense of control in the world, an increased sense

of belonging or being part of a community, and positive

changes in their relationship with and perception of their

child (Solomon et al. 2001). In a qualitative study, parents

of children with physical disabilities reported that contact

with other parents of children with similar disabilities

provided emotional, social, and practical support that could

not be derived from professionals or family and friends.

This contact with other parents also seemed to have a

‘‘powerful stress buffering influence’’ (Kerr and McIntosh

2000, p. 309).

Effects of Support Groups for Parents of Children

with ASD

The research that has focused on outcomes of support

groups for parents of children with ASD is exploratory and

qualitative (Bitsika and Sharpley 1999, 2000; Carter 2009).

Bitsika and Sharpley (1999) completed a small (n = 14)

exploratory study of outcomes associated with participa-

tion in an informational counseling group for parents of

children with ASD. These participants chose to attend one

of three in-person support groups held every second week

for 75 min sessions. At the end of each session, parents

chose the theme for the upcoming session, and generally,

the focus of the sessions was on providing support, rather

than discussing specific strategies for dealing with personal

stress. Following each session, the participants completed a

brief questionnaire that was developed by the authors for

the study, which examined participants’ comfort and con-

nection with group members, perceptions of themselves,

self-efficacy, and well-being. The exploratory analyses

indicated trends towards an increase in positive self-concept

and decreased distress over time. Both group cohesion and

self-efficacy increased gradually until about the half way

point of the intervention and then decreased gradually; the

authors were unsure of the explanation for this finding,

especially in light of reports that participants valued the

STRESSORS Child Functioning

(SIB-R)

PSYCHOLOGICAL WELL-BEING

Positive Perceptions (KIPP Positive Contributions)

Parenting Stress (FSCI) Mood (STDS, STAI)

SUPPORT GROUP USE and PERCEIVED USEFULNESS

Hypothesized “Buffer”

(Moderator)

Fig. 1 Stress buffering model: Theoretical framework

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opportunity to connect with other parents. When asked to

rate their experience with the group at follow-up, the par-

ents indicated that they very much enjoyed participating,

they found the group very valuable, and they would rec-

ommend that other parents participate. Compared to these

ratings, parents had lower, but still positive ratings of the

helpfulness of the group in dealing with a series of prob-

lems. When asked about the major benefits of participating

in the group, almost all of the parents indicated that

receiving support and understanding from the other group

members was the best outcome; whereas one parent stated

that the major benefit for her was providing assistance to

other group members. Overall, the authors concluded that

the group was of value and was helpful to the participants,

but the methodological limitations of the study, such as

small sample size and the use of unstandardized measures

that the participants found difficult to answer, may have

reduced the effects seen on standardized measures of well-

being. The authors recommended that further research be

conducted to examine the benefits of support groups for

parents of children with ASD.

In a second study, Bitsika and Sharpley (2000) eval-

uated the effects of a parent support program with a

psycho-educational focus on learning stress management

techniques that included time in each session to discuss

parents’ current concerns. The groups were scheduled for

eight weekly 75-min sessions, and parents completed

questionnaires after each session and pre- and post-group.

There were no significant changes in stress, anxiety, or

depression symptoms following participation in this group.

The lack of reported change may have occurred because

the pre-group assessment showed that neither the mean

anxiety nor mean depression scores of participants fell

outside the normal range prior to participation in the group.

Parents reported that they enjoyed the sessions and found

them helpful. This study was also limited by a small

sample size (n = 11), and therefore the authors reported

that it lacked sufficient power to detect differences in the

outcome measures, although they were able to detect a

significant increase in group cohesion from pre- to post-

group. The authors concluded that the parents were espe-

cially satisfied with the focus on learning strategies for

coping with stress, and the parents emphasized the value of

learning with other parents with whom they could relate.

Bitsika and Sharpley also suggested that assisting parents

in learning to cope with their stresses could improve their

ability to learn strategies for managing their child’s

behaviour problems. However, this suggestion is in con-

trast to the recommendations of other researchers (Smith

et al. 1994; Solomon et al. 2001) who have found that

parents prefer groups that focus on emotional support and

developing a sense of belonging, rather than sharing

information.

Carter’s (2009) qualitative study of parents’ experiences

with online support appears to be the only study that

examined outcomes of online support groups for parents of

children with ASD. Parents were asked about the positive

and negative experiences they had when using ‘‘the Inter-

net for self-help group support and advocacy’’ (p. 47).

Twenty-two parents were interviewed about their experi-

ences with using the internet. These parents had not nec-

essarily participated in a formal online support group; they

needed only to have used the internet for support (e.g.,

accessing information or resources, participating in a list-

serv 1 ), and/or advocacy. The main themes that emerged in

the parents’ responses about the positive aspects of using

the internet for support included receiving access to

information and services, connecting with others, and

increasing advocacy. At the same time, the disadvantages

of accessing support through the internet were that it pro-

vided inaccurate, confusing, or overly negative information

and parents sacrificed time with family for advocacy that

was not always effective. The author concluded that online

support groups for parents of children with ASD have

many potential benefits, but efforts should be made to

ensure that parents receive accurate and useful information.

She recommended that further research was required to

evaluate the outcomes of online PSGs specifically.

Limitations of Previous Research

Previous research on support groups for parents of children

with ASD is sparse and predominantly exploratory (Bitsika

and Sharpley 1999; Carter 2009). Those studies that have

examined pre- to post-group changes (Bitsika and Sharpley

1999, 2000) are limited by small sample sizes (ranging

from n = 11 to n = 14) and the use of unstandardized

measures. In addition, there has been no published quan-

titative research examining the effects of online PSGs for

this population despite the growing trend for parents to

connect in this way. Those studies that have examined the

broader group of parents of children with special needs are

qualitative (e.g., Kerr and McIntosh 2000) and largely

atheoretical (e.g., Singer et al. 1999; Solomon et al. 2001),

focusing on a few general variables (e.g., helpfulness,

group climate, empowerment) expected to change as a

result of support group use. By establishing a theory base to

measure the effects of PSGs systematically, we believe that

research can better assess the role of PSGs in providing the

most appropriate and effective support for parents of

children with ASD.

In developing the format for the support groups in this

study, the findings from previous research on parents’

1 Listservs allow participants to share information by sending

messages to the email addresses of subscribers.

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preferences for support groups were taken into consider-

ation. Smith et al. (1994) surveyed parents of children with

special needs about their experiences with PSGs. Parents

reported a preference for the support aspect of the group as

opposed to information sharing and teaching from profes-

sionals; they enjoyed being able to meet other parents and

share feelings. As well, parents reported that child care

and transportation were both barriers to using support

groups. Taking these findings into consideration, this study

examined an online parent support group that was designed

as a discussion group for parents focusing on sharing

experiences and developing relationships with facilitation

from a counselling professional. The online component

was expected to reduce some barriers to participation; for

example, parents were able to participate from their home

and after their child had gone to bed. The topics of dis-

cussion for these group sessions were based on parent

suggestions, so as to mirror both the approach taken by

many community PSGs and previous research on in-person

PSGs for parents of children with ASD (Bitsika and

Sharpley 1999). Finally, this group design was chosen with

a view to providing a model for agencies wishing to

implement similar groups to support families of children

with ASD.

Objectives

This study aimed to determine whether involvement in an

online parent support group affects parent reported per-

ceived stress, symptoms of anxiety, symptoms of depres-

sion, and positive perceptions of their child. Consistent

with the effects of support group involvement in previous

research, it was hypothesized that parents involved in the

online support groups would report less perceived stress,

fewer symptoms of current (state) anxiety and depression,

and more positive perceptions of their child than the con-

trol group following participation in the group, and that the

two groups (control and treatment) would not significantly

differ in these measures of well-being before participation

in the group. In addition, the Stress Buffering Model was

used as a framework to assess whether support group use

for parents who perceive the support group to be useful

moderated (or ‘‘buffered’’) the effect of child functioning

on parent psychological well-being. It was hypothesized

that for parents who perceived the support group to be

useful, involvement in the support group would moderate

the effect of child functioning on psychological well-being.

Specifically, it was expected that when comparing parents

who have children with similar severity of behaviour

problems, parents who participated in a PSG they per-

ceived to be useful would report less stress, anxiety, and

depression, and more positive perceptions than parents who

do not participate in the PSG. Finally, this study provides

new documentation about how to develop and implement

an online support group for parents of children with ASD.

Recommendations for future implementation of the proto-

col employed in this study may be useful to clinicians

working with these families. Findings from this study on

outcomes associated with involvement in an online PSG

provide information for future research and the develop-

ment of supports for families.

Method

Participants

Parents of children with ASD were recruited from the

larger sample of participants (n = 178) who completed a

study examining predictors of involvement in PSGs

(Clifford 2011). Parents were required to have access to a

computer with an internet connection in order to partici-

pate. Those parents who indicated an interest in partici-

pating in a new online parent support group were invited to

participate (n = 119). Thirty-six of these parents registered

for the online support groups, 30 attended at least one of

the sessions, and 20 completed all of the post-group mea-

sures. Parents who did not participate in the online support

group (n = 142) were invited to participate in the control

group and 25 of them completed all of the post-group

measures.

Measures

Demographic information, including the child’s gender and

date of birth, the parent’s gender and date of birth,

household income, and parental education and employ-

ment, was collected as part of the pre-group questionnaires.

The following measures were used to assess parent

well-being and included in the pre-and post-group ques-

tionnaires:

Family Stress and Coping Interview (FSCI; Nachshen et al.

2003)

The FSCI measures perceived stress and coping in care-

givers of individuals with developmental disabilities,

including ASD. For this study, only the questions mea-

suring perceived stress were used. Parents rate the stress-

fulness of 23 issues (e.g., ‘‘The diagnosis of your child as

having a disability’’ and ‘‘Deciding on the best level of

integration for your child’’) on a 4-point scale from 0 (Not

Stressful) to 3 (Extremely Stressful). Total scores are cal-

culated by summing individual scores and higher scores

indicate higher levels of perceived stress. Previous research

with the FSCI found high internal consistency (a = .89),

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high test–retest reliability (r = .80), and face validity

(Nachshen et al. 2003). In the current study there was also

good internal consistency (a = .87) and high test–retest reliability (a = .77).

State Trait Anxiety Inventory (STAI; Spielberger 1983)

The STAI measures both current (state) and general (trait)

anxiety using two scales with 20 items each. Participants

rate how much each item describes them, currently or in

general, on a scale from 1 (not at all/almost never) to 4

(very much so/almost always) for both the state and trait

subscales, respectively. The scale provides total scores for

both state and trait anxiety and higher scores reflect more

symptoms of anxiety. In previous research, inter-item

reliability for both the trait subscale (ranging from a = .72 to a = .96) and state subscale (ranging from a = .65 to a = .96) was quite good (Barnes et al. 2002). Reliability was also good in the current study for both the trait

(a = .79) and state (a = .91) scales.

State-Trait Depression Scales (STDS; Spielberger et al.

2003)

The STDS measures current (state) and general (trait)

symptoms of depression using 40 items, 20 from each scale

(state and trait). Participants rate how much a given char-

acteristic describes them, currently or in general, on a scale

from 1 (not at all/almost never) to 4 (very much so/almost

always) for the state and trait scales, respectively. Relevant

items are reverse scored, and two total scores (state and

trait) are calculated with higher scores reflecting more

symptoms of depression. Previous research (Spielberger

et al. 2003; ranging from a = .91 to a = .96) and the current study (a = .92 to a = .94) have found high inter- nal consistency for both scales.

Kansas Inventory of Parental Perceptions

(KIPP; Behr et al. 1992)

The KIPP measures parents’ perceptions of the contribu-

tions their child has made to their family (Positive Con-

tributions), how their child compares to others around them

(Social Comparisons), the causes of their child’s disability

(Causal Attributions), and the control they have over their

child’s disability (Mastery/Control). For the current study,

the Positive Contributions domain, which includes nine

subscales, was used to measure positive perceptions of the

child with ASD. The other domains were not included.

Parents are asked to rate each item in terms of how much

they agree or disagree on a scale from 1 (strongly disagree)

to 4 (strongly agree). The resulting score indicates how

positively the parent perceives the effect of their child on

their life, with higher scores indicating more positive per-

ceptions. Each subscale on the KIPP had adequate to good

internal consistency in the standardization sample (ranging

from a = .66 to a = .87; Behr et al. 1992). In the current study, internal consistency of the subscales ranged from

acceptable (a = .60) to excellent (a = .92). The subscale scores have not been found to be stable over time, and

rather they tend to reflect the current cognitions of the

individual.

The following measures were used to assess various

characteristics of the participants’ children, including adap-

tive functioning, maladaptive behaviours, and symptoms of

ASD.

Scales of Independent Behavior-Revised Short Form

(SIB-R; Bruininks et al. 1996)

The SIB-R measures adaptive behaviour by parent ratings

of the child’s ability on 40 different skills. Parents rate the

child’s ability to complete each task on a 4-point scale

ranging from 0 (never or rarely) to 3 (does very well-

always or almost always-without being asked). Adaptive

behaviour and age equivalent scores are obtained, on which

higher scores indicate more abilities or adaptive behaviour.

Parents are also asked to report whether the child engages

in any of 8 different types of problem behaviour, and rate

the frequency and severity of the behaviour. General,

internalized, asocial, and externalized maladaptive behav-

iour scores can be calculated with lower maladaptive

behaviour scores being more problematic. Scores ranging

from 10 to -10 fall within the ‘‘normal range’’, scores from

-11 to -20 are ‘‘marginally serious’’, -21 to -30 are

‘‘moderately serious’’, -31 to -40 are ‘‘serious’’, and

scores lower than -41 are ‘‘very serious’’. The SIB-R was

standardized on a population that included a sample of

individuals with intellectual disabilities, and is reported to

have good to excellent internal consistency, high test–retest

reliability, and good inter-rater reliability (Bruininks et al.

1996).

Social Communication Questionnaire (SCQ; Rutter et al.

2003)

The SCQ is a parent-report measure used for screening

children who may have ASD. Parents are asked to answer 40

yes–no questions regarding the child’s social and commu-

nication skills. The Current Form, which was used for this

study, asks about the child’s functioning over the last

3 months. The SCQ has good sensitivity, ranging from .71

to .90, and specificity, ranging from .71 to .86 (Chandler

et al. 2007; Corsello et al. 2007). For this study, the SCQ

was primarily used for screening participants’ children for

inclusion. Consistent with the literature (Corsello et al.

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2007), a cut-off score of 15 was used for children 8 years

and older, whereas a cut-off score of 11 was used for chil-

dren under 8 years.

Post-Session and Post-Group Evaluations of the Parent

Support Group

Participants in the online support group were asked to

complete brief post-session surveys after each of the sup-

port group meetings. They rated their satisfaction with the

support they received and with the topic discussed during

the session on a 5-point scale from 1 (Very Dissatisfied) to

5 (Very Satisfied). The participants also reported the most

and least helpful aspects of the session and provided sug-

gestions for future topics.

In addition, parents who participated in the support

group were asked questions about the group in their post-

treatment questionnaires. Specifically, parents were asked

to indicate how many of the sessions they had attended,

their reason(s) for missing sessions, and whether they

thought it was important to change something about the

group in order to improve attendance. Parents also used a

10-point scale ranging from 1 (Very Dissatisfied) to 10

(Very Satisfied) to rate their overall satisfaction with the

support received during the group, and they reported

qualitatively the most and least useful aspects of the

group.

Procedure

Participants were initially recruited to participate in a

larger study on support group use among parents of

children with ASD through multiple sources including

postings on websites and online forums, mailings through

research labs and agencies in several Ontario cities, flyers

in agency waiting rooms, and ads in newsletters. Parents

were invited to complete a series of questionnaires in a

secure online survey program. If participants did not

complete all of the questionnaires at once they received a

reminder via email to return and complete the remaining

questionnaires. It took about 1 h to complete the ques-

tionnaires, which served as the pre-group time point in

this study. At the end of the 8-session support group,

participants completed a post-group survey, which con-

sisted of a subset of the measures they had completed

during the pre-group survey that were required to measure

change in the current study (see above) and took about

30 min to complete online. Parents who did not partici-

pate in the online support group and who had completed

the pre-group survey were invited to be part of the control

group for this study and were also asked to complete the

post-group survey.

Online Parent Support Group

Participants who indicated an interest in participating in the

online PSG were invited to participate and were asked to

select from several possible meeting times for the PSG.

Meeting times were chosen based on the preference of the

parents with 5–10 parents registered in each of the groups,

although on average 3 parents attended each session. Four

of the five groups were held from 9:00 pm until 10:00 pm

on weekday evenings, whereas the fifth was held from

noon until 1:00 pm on a weekday. Parents also chose the

frequency of meetings, with 4 of the 5 groups being held

bi-weekly and one held weekly. Most groups ran for 8

sessions, except for one that ran for 7 sessions because of a

statutory holiday on the day of one of the sessions.

Each parent was assigned an account with a pseudo-

name and a private password to be used during the real-

time online chat sessions. The facilitator also invited the

parents to post comments and questions on an online dis-

cussion board that could be checked at their convenience.

Following each session, the parents completed a short

survey regarding their experience during that session and

provided recommendations regarding changes to the for-

mat and structure for future sessions. The participants also

recommended topics for future group sessions. The facili-

tator looked for common themes in the recommendations

incorporating them into future sessions as possible and

choosing topics that could apply to parents at various

stages in parenting a child with ASD. The topics included:

treatment issues, the impact of ASD on families, managing

behaviour problems, coping with stress, advocacy, dealing

with schools and the community, useful resources, and

transitions. The topics for each group varied based on the

interests of the members; however, most of these topics

were covered in each group. In general the group sessions

focused on providing mutual support and a sense of

belonging among the participants, with specific topics

structuring the discussion.

Facilitator

The facilitator was a Master’s level clinician (doctoral stu-

dent in Clinical Psychology) who was experienced in

working with families of children with ASD and in facili-

tating psycho-educational groups. In addition to assigning

the topics for discussion, the facilitator’s roles during each

session included coordinating the beginning of the session

(e.g., inviting each participant to join the group chat and

ensuring their technology was functioning so that they could

participate); monitoring the session; occasionally providing

information or clarification; redirecting the conversation

when the discussion moved away from the topic; intro-

ducing subtopics to keep the discussion flowing; drawing

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participants’ attention to a question or comment that had not

been addressed; and reminding the participants when it was

time to wrap up the session. The facilitator sent emails to the

participants reminding them of the upcoming meetings

3 days prior to the session, the morning of the session, and,

for those who had not logged in, 5 min after the session

began. She also sent emails after each session reminding the

parents to complete the post-session survey and to share any

resources that were discussed during the group.

Data Analyses

Changes in the well-being of the parents in the treatment and

control groups were evaluated using a multivariate mixed

model analysis of variance (MANOVA). Specifically, dif-

ferences in parenting stress, state anxiety, state depression,

and positive perceptions were examined between groups

(treatment and control) and over time (pre- and post-

treatment). A series of multiple regression analyses was

planned to evaluate the relationship between PSG use, child

functioning and parent psychological well-being, in accor-

dance with Baron and Kenny’s (1986) guidelines for assessing

moderators. The multiple regressions included; (1) child

functioning as a predictor and psychological well-being as the

outcome variable, (2) support group use as the predictor and

psychological well-being as the outcome variable, and (3)

child functioning and support group use as predictors and

psychological well-being as the outcome variable.

Previous studies examining the outcome of participation

in PSGs have been limited by insufficient power due to

small sample sizes (ranging from N = 10 to N = 14;

Bitsika and Sharpley 1999, 2000; Fontana et al. 1988;

Troester 2000). For the purposes of the current study, we

had proposed to recruit 60 participants in order to have the

power to detect a medium effect size (g2 = .06) in the overall result of a MANOVA 80 % of the time (a = .05). However, we were only able to recruit 45 participants,

therefore had the power to detect a medium effect size

(g2 = .06) in the overall result of a MANOVA 71 % of the time (a = .05) or a significant interaction (i.e., moderator) 24 % of the time (Faul et al. 2007). This study had the

power to detect a Pearson correlation with a medium effect

size (r = .36) 80 % of the time (Faul et al. 2009).

Results

Descriptive Data

Support Group Participants

All of the parents who participated in the online PSG

(n = 20) were mothers and their mean age was 43 years

(SD = 5.61 years), though these participants ranged in age

from 33 to 53 years. The majority of these parents were in

a relationship (80 %) with most being married (n = 15)

and one living in a common-law relationship (n = 1),

whereas few were single (n = 3) or divorced (n = 1). Most

of the parents who participated in the online PSG had

attended college or university (90 %, n = 18); 20 % had a

college diploma (two year or associates’ degree; n = 4),

30 % had a university degree (n = 6), and another 30 %

had a professional or graduate degree (n = 6). The parents’

reported annual household incomes ranged from $19,000 to

$600,000, with the median income being $83,000. Fourteen

of the parents lived in Canada (70 %) and the remaining 6

lived in the United States (30 %). Prior to participating in

the online PSG, the parents reported experiencing mild to

moderate parenting stress (M = 38.50, SD = 14.49), and

few symptoms of state anxiety (M = 20.80, SD = 8.65) or

depression (M = 19.65, SD = 7.65). They also reported

that in some aspects of their life their child with ASD had

made positive contributions and in other aspects they had

not, thus their mean score on the measure of positive

perceptions was between ‘‘agree’’ and ‘‘disagree’’ (M =

137.80, SD = 22.98). None of the variables measuring

well-being showed significant skewness or kurtosis.

The children (17 boys and 3 girls) of the parents who

participated in the online PSG ranged in age from 2 to

22 years with a mean age of 9 years (SD = 4.83 years),

and they had a variety of diagnoses. The parents reported

that half of the children (n = 10) had a diagnosis of

Autistic Disorder or Autism, 30 % had PDD-NOS (n = 6)

and 20 % had Asperger’s Syndrome (n = 4). One of the

children had a co-morbid diagnosis of intellectual disabil-

ity. The children also varied in their functioning level and

their mean adaptive behaviour score had an age equivalent

of about 3 years, 10 months (M = 65.25, SD = 20.19),

which is significantly lower than their mean chronological

age, and ranged from 9 months to 14 years, 6 months.

Overall, these parents reported that their children had some

behaviour problems with the mean general maladaptive

behaviour score falling within the Moderately Serious

range (M = -21.05, SD = 16.64).

Control Group

The majority of the parents who participated in the control

group were mothers (n = 23); however, there were also 2

fathers in this group. These parents ranged in age from 26 to

65 years with a mean age of 43 years (SD = 8.42 years).

Most of the parents were married (n = 20, 80 %), two were

in common-law relationships (n = 2), two were single

(n = 2), and one was divorced (n = 1). This was also a

highly educated group with 96 % having completed some

college or university (n = 24). Sixteen percent (n = 4) had

1668 J Autism Dev Disord (2013) 43:1662–1675

123

a college diploma, 20 % had an undergraduate degree

(n = 5), and 36 % had a professional or graduate degree

(n = 9). The parents in the control group reported that their

household incomes ranged from $17,000 to $200,000 with a

mean income of $89,541 (SD = $48,538). Most of the

parents (n = 19) lived in Canada, and the others were in the

United States (n = 6). The parents in the control group

reported experiencing mild to moderate parenting stress

(M = 37.00, SD = 11.27), and few symptoms of state

anxiety (M = 21.45, SD = 6.02) or depression (M = 20.38,

SD = 8.34). In some aspects of their life, their child with

ASD had made positive contributions and in other aspects

they had not, thus their mean score on the scale measuring

positive perceptions was between ‘‘agree’’ and ‘‘disagree’’

(M = 129.12, SD = 26.82). None of the variables measur-

ing well-being showed significant skewness or kurtosis.

The parents in the control group had children (24 boys

and 1 girl) ranging in age from 3 to 17 years with a mean

age of 10 years old (SD = 4.14 years). They reported that

their children had a variety of diagnoses within the autism

spectrum, with the majority having a diagnosis of Autistic

Disorder or Autism (n = 13), 40 % with Autism Spectrum

Disorder (n = 10), 24 % with Asperger’s Syndrome

(n = 6), and one with PDD-NOS (n = 1).2 Two of the

children also had co-morbid intellectual disabilities. These

children were reported to have a range of adaptive

behaviour with the mean score at the age equivalent of

5 years, 2 months (M = 71.08, SD = 16.09), which is

considerably lower than the mean chronological age for

this group, and ranging from 1 year, 6 months to 11 years,

8 months. In addition, these children were described as

having few behaviour problems (M = -16.64, SD =

12.28).

The parents who participated in the online PSG did not

differ significantly from the parents who participated in the

control group on any of the demographic variables, nor did

either group of parents differ significantly from the parents

who were invited, but did not participate in this study

(Table 1).

Group Attendance

As outlined above, 119 parents were invited to participate

in the PSG; 30 % (n = 36) of the invited parents registered

for a group, and 25 % (n = 30) of the invited parents

attended at least one session. Sixty-four percent (n = 23)

of the parents who initially registered attended 3 or more of

the support group sessions, whereas 25 % attended 6 or

more sessions (n = 9), and only 1 parent attended all of the

sessions in her group. Despite numerous reminders, only

56 % (n = 20) of the parents who initially registered for

the groups completed the post-group survey. The most

common reasons that parents who had participated in at

least one session reported for not attending the meetings

were scheduling conflicts (n = 10), problems with com-

puter or internet access (n = 6), illness (n = 4), forgetting

to login (n = 4), and being too busy (n = 3). One parent

indicated that the group was not useful to her and that she

did not receive enough support from the group, so she

chose to stop attending. None of the other parents chose

these latter two options as the reasons they did not attend

the sessions. When asked specifically, 75 % (n = 15) of

the parents who had participated in at least one session said

they would not recommend changing anything about the

group in order to increase attendance.

Effects of Online Parent Support Group

Changes in the well-being of the parents (i.e., parenting

stress, anxiety, depression, and positive perceptions) were

examined between the treatment and control groups and

over time (pre- and post-treatment). Neither the main

effects of group, nor the main effects of time, nor the group

by time interaction were significant, and the observed

power for these analyses was low (i.e., .31, .21, and .09,

respectively). As discussed above, the participants had

relatively high pre-group well-being scores (Table 2).

Perceived usefulness of support group participation was

hypothesized to be a predictor of parental well-being and a

moderator of the relationship between child problem

behaviours and parental well-being. Overall the parents

Table 1 Demographics for participants in the treatment and control groups, and parents who did not participate

Demographic variable Treatment

(n = 20) Mean

(SD)

Control

(n = 25) Mean

(SD)

Non-

participant

(n = 107) Mean (SD)

F

Household income $113,444

($133,466)

$89,541

($48,538)

$121,419

($348,661)

0.11

Parent age (years) 42.70

(5.61)

42.82

(8.42)

41.08

(7.08)

0.89

Child age (years) 9.32

(4.83)

9.81

(4.14)

9.10

(4.67)

0.26

Child adaptive

behaviour

65.25

(20.19)

71.08

(16.09)

68.80

(18.68)

0.56

Child maladaptive

behaviour

-21.05

(16.64)

-16.64

(12.28)

-18.35

(11.20)

0.73

Child ASD symptoms 22.40

(5.00)

20.00

(8.11)

19.80

(4.88)

1.88

2 These categories were not mutually exclusive; some parents

indicated that their child had both Autism and Autism Spectrum

Disorder.

J Autism Dev Disord (2013) 43:1662–1675 1669

123

rated the group as useful (M = 7.35, SD = 2.21); how-

ever, there was not a significant relationship between per-

ceived usefulness of the PSG and parenting stress (r = .36,

p = .12), state anxiety (r = .25, p = .30), state depression

(r = .14, p = .57), or positive perceptions (r = .01,

p = .99) among the support group users post-group. Child

maladaptive behaviour (SIB-R General Maladaptive Index,

M = -21.30, SD = 14.02, Moderately Serious Range)

was significantly correlated with parenting stress (r = .64,

p \ .01), state anxiety (r = .76, p \ .001), and state depression (r = .74, p \ .001), but not with positive per- ceptions (r = .21, p = .37). Child adaptive behaviour was

significantly correlated with positive perceptions (r = .49,

p \ .05), but not with the other measures of well-being, and child age was not correlated with any of the variables

measuring well-being. Due to the small sample size and the

lack of significant correlations between the variables

(Table 3), the proposed multiple regression analyses to

investigate moderation were not calculated.

Satisfaction with the Online Parent Support Group

Parents who participated in the PSG were asked to rate their

satisfaction with the support they received during each ses-

sion and with the topics of discussion for each session on a

5-point scale. Overall, parents reported being ‘‘Satisfied’’ with

both the support received (M = 4.10, SD = 0.93) and the

topics discussed (M = 4.12, SD = 0.90) in the sessions. This

was the general finding for each of the sessions (see Fig. 2).

Following the completion of the group, when asked to rate

the usefulness of the support group overall on a 10-point

scale, parents reported that the group was useful (M = 7.35,

SD = 2.21), and they reported receiving a moderate amount

of support from the group (M = 6.85, SD = 2.30).

When asked to report qualitatively about the most and

least useful aspects of the group, while the participants

tended to have similar beliefs about the most useful aspects

of participating in the PSG; there was more variability in

their reports of the least useful aspects. Many parents

reported that the most useful aspect of the group was the

opportunity to connect with other parents (n = 8) and to

gain information about resources (n = 5). In addition, a few

of the participants (n = 3) reported that the facilitation

provided was the most useful aspect of the group, and one

parent reported that helping with a research project was

useful. In terms of the least useful aspects of the group, some

parents reported issues with the online format, such as the

delay in receiving responses (n = 2) or participants typing

at the same time (n = 1). Other parents reported that the

differences in experiences of the parents, such as age of

child (n = 1) or geographic location (n = 2) made the

group less useful. A couple of parents were concerned with

attendance (n = 2), one found that other parents’ complaints

were not useful, a couple (n = 2) reported that some of the

topics were difficult to chat about, and one reported that she

wanted more resources from the facilitator.

Discussion

This study faced many of the same challenges that other

studies of PSGs have encountered (Bitsika and Sharpley

Table 2 Well-being scores for parents in the treatment and

control groups pre- and post-

parent support group

Variable Treatment (n = 20) Control (n = 25) Interaction F

Pre-PSG

Mean

(SD)

Post-PSG

Mean

(SD)

Pre-PSG

Mean

(SD)

Post-PSG

Mean

(SD)

Parenting stress 38.50

(14.49)

37.10

(12.67)

37.00

(11.28)

33.52

(10.53)

0.42

Positive perceptions 139.84

(29.67)

138.74

(15.81)

129.58

(27.29)

133.25

(17.24)

0.83

Anxiety symptoms 20.80

(8.64)

21.75

(7.36)

21.46

(6.02)

21.63

(7.81)

0.21

Depression symptoms 19.65

(7.65)

19.20

(6.13)

20.38

(8.34)

20.04

(6.80)

0.01

Table 3 Pearson correlations between child characteristics and par- ent well-being in online support group users

Parent well-

being

Child characteristics

Maladaptive

behaviour

Adaptive

behaviour

Autism

symptoms

Child

age

Parenting stress -.64** -.18 .38 -.25

Positive

perceptions

.21 .49* -.40 .13

State anxiety

symptoms

-.76** -.05 .38 -.36

State depression

symptoms

-.74** -.24 .34 -.29

* p \ .05; ** p \ .01

1670 J Autism Dev Disord (2013) 43:1662–1675

123

1999, 2000; Fontana et al. 1988; Troester 2000) and

unfortunately it was not possible to answer the main

research questions concerning the effects of participating in

an online support group for parents of children with ASD.

Previous studies had sample sizes ranging from 10 to 14

participants in the PSG (Bitsika and Sharpley 1999, 2000;

Fontana et al. 1988; Troester 2000), and used exploratory

data analyses (e.g., regression line of best fit) and under-

powered (.43) multivariate analysis of variance (MANOVA)

to analyze differences across time (Bitsika and Sharpley

1999, 2000). The current study had a sample size of 45 and

the power to detect a medium effect (r = .36) 71 % of the

time, therefore, it would appear that the effect size for the

relationship between perceived usefulness of the PSG and

parental well-being was below this level. The power to

detect moderator effects is generally very low, because the

test is in the interaction term. This study only had the

power to detect a medium effect (g2 = .06) of the inter- action between time and treatment group on well-being

24 % of the time, and no such effect was detected. It is

possible that because the parents had relatively few

symptoms of anxiety and depression, and little parenting

stress, as in a previous study (Bitsika and Sharpley 2000),

there was little room for change in their well-being scores.

This study did provide some descriptive information that

will be useful for replicating this online PSG, and it pro-

vided information about parents’ reports of their experi-

ences while participating in this group. Similar to the

research on in-person PSGs (Bitsika and Sharpley 1999,

2000), the parents who participated in the online support

group reported being satisfied with the support they

received and the topics discussed during each session of the

support group. In general, the parents reported that the

group was useful and that they received some support from

it. They especially enjoyed the opportunity to connect with

other parents and share information about resources. It will

be important, however, to replicate this study with a larger

sample before firm conclusions can be made. In addition,

future studies may consider including long-term follow-up,

which may provide additional information about the out-

comes for participants, particularly related to ongoing

contact following the PSG.

Theoretical Implications

Consistent with previous research (Bitsika and Sharpley

2004; Blacher and McIntyre 2006; Dabrowska and Pisula

2010; Eisenhower et al. 2005; Hamlyn-Wright et al. 2007;

Lecavalier et al. 2006; Sharpley et al. 1997), parents reported

that their children displayed behaviour problems and the

severity of behaviour problems was correlated with parental

well-being. Unfortunately, we were not able to assess the

merits of the Stress Buffering Model in understanding the

impact of an online support group for parents of children with

ASD. Although this study did meet the criteria outlined by

Vaux (1988)—the stressor (child functioning) was related to

the outcome (perceived stress) and the buffer (support group

use) was deemed useful by participants—there was not

enough power to assess the moderation. Further research

examining this model as it applies to this population is

warranted as this study was largely inconclusive, and the

model has been successfully applied in other populations and

has promise for use with parents of children with disabilities

who experience considerable stress in their lives.

Clinical Implications

The development of this online support group for parents

of children with ASD is a first step in developing acces-

sible, cost-effective, and efficient means of supporting

parents of children with ASD. To these authors’ knowl-

edge, no other online support programs for this population

have been developed and researched in a systematic way

(i.e., with pre- and post-group data collection, and post-

session data collection). The online nature of the group

offers the potential to reach parents who may not partici-

pate in traditional support groups because of geographic

location, lack of child care, or inconvenience. Further

0

10

20

30

40

50

60

70

80

90

100

Very Unsatisfied Unsatisfied

Support

Topics of Discussion

% S

e s

s io

n R

a ti

n g

s Very SatisfiedSatisfiedNeutral

Fig. 2 Bar graph of satisfaction with support

received and topics discussed

during parent support group

sessions

J Autism Dev Disord (2013) 43:1662–1675 1671

123

development of online support groups should continue in

order to find ways to support as many parents as possible.

For parents of children with disabilities, connecting with

other parents is seen as an excellent way to enhance well-

being (Kerr and McIntosh 2000; Solomon et al. 2001).

Although Bitsika and Sharpley (1999) also failed to find

many statistically significant changes over time, their par-

ents reported that the in-person PSG was helpful, especially

because of the opportunity to connect with other parents.

The same was true in the current study, despite the fact that

these parents had never met face-to-face. For most parents,

having even one other parent to chat with was helpful, and

they did not need a large group in order to feel supported or

heard. This sentiment was captured in the qualitative

responses of the participants, many of whom reported that

the support, understanding, and validation received from

other parents were the most useful aspects of participating

in the group. Furthermore, many participants valued the

experience as it made them feel as though they were not

alone. The second most commonly reported benefit of the

group in the current study was access to information about

resources and services, which is also an important reason to

connect parents with each other.

Clearly, further research is needed to determine the true

effectiveness of online support groups for parents of children

with ASD. However, based on the experience of the author in

this study, the following recommendations are made to cli-

nicians who are interested in implementing this type of

group: (1) ensure that the facilitator is experienced and

comfortable working with families of children with ASD and

is able to think quickly to intervene effectively during group

sessions; (2) clearly outline the format and expectations of

the group at the beginning of the group to ensure that parents

understand that it is a mutual parent support group, rather

than a facilitator-led psycho-educational group; (3) find

ways to encourage regular attendance in order to obtain the

most benefit for the parents involved; (4) if numbers permit,

consider dividing parents into groups based on the age of the

children and/or geographic location; (5) encourage parents to

take a role in deciding the focus and direction of the group,

including the frequency of meeting times and the topics of

discussion; and (6) encourage the development of relation-

ships among the parents.

Limitations and Directions for Future Research

It is difficult to know whether the lack of differences over

time and between groups was due to relatively high well-

being scores among the participants prior to participation in

the group or one of the following possible limitations:

small sample size, an ineffective intervention, the variables

chosen to measure change over time, the measurement

tools chosen, or some other problem. Future research with

this population should focus on ruling out these potential

problems when examining the effectiveness of support

groups for parents of children with ASD.

Sample Size

Recruitment and participant retention were major concerns

in this study and in other studies of PSG use (Bitsika and

Sharpley 1999; Fontana et al. 1988; Smith et al. 1994). The

majority of parents who indicated an interest in partici-

pating in this online parent support group did not, in the

end, register for a group. Of those who registered, many did

not attend even half of the sessions. Other researchers

report similar issues with attendance in their studies of

support groups for this population (Bitsika and Sharpley

1999) and for parents of children with other disabilities

(Smith et al. 1994) and special needs (Fontana et al. 1988).

For example, Troester (2000) invited 200 parents of chil-

dren in special education to participate in PSGs at the

child’s school 20 parents registered for the groups, and

only 12 of these parents attended a group. Eight more

parents were registered with the groups, for a total of 20,

with only 10 completing the post-group survey. Troester

did not complete any quantitative data analyses. In another

study, parents of infants in a neonatal intensive care unit

were invited to participate in a PSG (n = 53) or a control

group (n = 41), and 60 % (n = 32) and 88 % (n = 36)

agreed to participate, respectively (Fontana et al. 1988).

However, of those who agreed to participate in the PSG,

only 12 (38 %) attended at least one session, and the

authors were not able to calculate changes over time.

Interestingly, most of the parents who completed the post-

group survey (75 %) in the current study indicated that the

low attendance was not something they would change or

consider a problem. Researchers who examine support

groups for parents of children with ASD in the future

should expect a very low proportion of interested parents to

actually register and attend the support group, and thus,

efforts should be made to recruit many more parents than

are required for sufficient power in the study. Unfortu-

nately, the issue of poor attendance is also a common

problem for in-person parent support groups (Smith et al.

1994). Further research should examine whether the online

format of the group is able to improve attendance rates by

directly comparing online and in-person support groups.

Further, the role of individual differences and preferences

of parents could be important in optimizing attendance and

is worthy of investigation, particularly as it is expected that

self-selection bias in these studies can play a role in both

attendance and outcomes. This sample includes a hetero-

geneous group of parents and children, which further limits

our ability to assess the outcome of participation in this

PSG. Future research may consider examining the role of

1672 J Autism Dev Disord (2013) 43:1662–1675

123

child diagnosis and co-morbidities, and parents’ gender,

diagnosis or identification with the broader autism pheno-

type in choosing appropriate interventions, including PSGs.

Group

This support group had not been implemented before being

evaluated in this study; however, parts of its design were

based on previously researched groups (Bitsika and Sharpley

1999) and on groups currently available in the clinical

community. Any number of variables related to the group

design could have affected whether or not significant

changes were found post-group. For example, perhaps a

greater number of group sessions overall would have yielded

more changes in parents’ well-being, or perhaps longer

sessions or more frequent sessions would have had a dif-

ferent effect. Parents liked the topics of discussion, but it is

possible that other topics might have led to more change in

well-being. Bitsika and Sharpley (1999, 2000) found that

parents seemed to prefer more strategy-focused groups that

had the goal of teaching parents to cope with stress rather

than groups like those conducted in the current study that

had a less direct focus, only connecting parents and allowing

them to discuss topics of interest, although this preference is

not supported by all researchers (Smith et al. 1994; Solomon

et al. 2001). Program evaluation of support groups that are

implemented clinically could help to determine which of

these variables may be the most important contributors to

change in well-being for parents of children with ASD.

Given that expectations for the group and parent needs

may have an effect both on outcomes and attendance, it may

be particularly useful to ask parents about their expectations

and needs. If sample size warrants, it may be helpful to group

parents based on their expectations for the group (e.g., share

resources, find others like me) in order to best meet the needs

of these parents. Monitoring whether expectations are met

across the sessions may make it possible to make changes to

the group in order to retain more participants and provide the

most appropriate support to these participants. Because of the

small number of parents who registered for the online support

groups, all parents who were available for a given time were

included in that session. Some parents indicated that being in

groups with others with similar experiences to themselves

would have been more useful, especially with respect to

parents of older children who were under-represented in this

study. In the future, efforts should be made to offer separate

groups to parents of younger and older children (or adult

children) and to separate groups by geographic location.

Measures

It is important to consider the outcome measures used

when examining explanations for the lack of change over

time in this study. It is possible that the simplicity of the

model chosen for this study also limited the possibility of

detecting differences, by reducing the number of variables.

Although the measures chosen have sound psychometric

properties, it is possible that the constructs measured would

not change over relatively short term involvement in an

intervention. It could also be possible that only responses to

certain items might change over the course of treatment

and the subsequent changes in the total score on the mea-

sure may not be large enough to yield a noticeable differ-

ence given the sample size.

Another possible limitation related to measures is that

different variables could change for different parents at

different times, which may mean that examining group

effects may not demonstrate real changes over time,

although individual changes may have occurred. Further

investigation of these possible issues is warranted; choos-

ing theoretically important items for examination rather

than total scores may provide more sensitive measures of

outcome. For example, the parents in this study reported

qualitatively that the group was useful in providing con-

nection with other parents, making parents feel less alone,

and increasing knowledge of resources. Thus, if parents

were specifically asked about these experiences and if

changes in their reports were measured over time, group

participation might be found to enhance a parent’s well-

being when measured in this way. In an unpublished study

of the effects of a support group for parents of children

with Asperger’s Syndrome (AS; Viecili et al. 2010), the

researchers found that parents reported increases in their

empowerment to access services in the community, greater

acceptance of their child and their feelings toward their

child, and more positive feelings towards having a child

with AS. These findings suggest that empowerment,

acceptance, and beliefs and feelings about the child are

important outcome measures for future studies of parent

support groups.

This study relied on parents to describe their own well-

being and perceptions of their children, as well as provide

information about their child’s diagnosis and functioning.

In order to support the use of parent reported diagnoses a

screening measure of ASD was used to screen participants

for inclusion in the study. Recently, others have found that

parent reported diagnoses in an online research registry

were accurate (Daniels et al. 2012).

Conclusions

This is a unique study, the first known to these authors to

investigate changes in parental well-being following

involvement in an online support group for parents of

children with ASD. Unfortunately, we were not able to

J Autism Dev Disord (2013) 43:1662–1675 1673

123

detect any changes in parental well-being; however, the

parents who participated in this online PSG reported

being satisfied with the group and with the support they

received. This study provides suggestions for both clinical

work and research in the new and innovative area of

online support.

Acknowledgments This paper was prepared as part of Tessen Clifford’s doctoral dissertation. Special thanks to Dr. Beth Kelley and

Dr. Kevin Parker for their support in the development of this project.

The first author was supported through a Social Sciences and

Humanities Research Council Joseph-Armand Bombardier Canada

CGS Doctoral Scholarship [Award # 767-2008-2150] and an Ontario

Graduate Scholarship.

References

Baker, B. L., McIntyre, L. L., Blacher, J., Crnic, K., Edelbrock, C., &

Low, C. (2003). Pre-school children with and without develop-

mental delay: Behaviour problems and parenting stress over

time. Journal of Intellectual Disability Research, 47, 217–230. Barnes, L. L. B., Harp, D., & Jung, W. S. (2002). Reliability

generalization of scores on the Spielberger State-Trait Anxiety

Inventory. Educational and Psychological Measurement, 62, 603–618.

Baron, R. M., & Kenny, D. A. (1986). The moderator–mediator

variable distinction in social psychological research: Conceptual,

strategic, and statistical considerations. Journal of Personality and Social Psychology, 51, 1173–1182.

Behr, S. K., Murphy, D. L., & Summers, J. A. (1992). User’s manual: Kansas inventory of parental perceptions (KIPP). Lawrence: Beach Center on Families and Disability.

Bitsika, V., & Sharpley, C. (1999). An exploratory examination of the

effects of support groups on the well-being of parents of children

with autism-I: General counselling. Journal of Applied Health Behaviour, 1, 16–22.

Bitsika, V., & Sharpley, C. (2000). Development and testing of the

effects of support groups on the well-being of parents of children

with autism-II: Specific stress management techniques. Journal of Applied Health Behaviour, 2, 8–14.

Bitsika, V., & Sharpley, C. F. (2004). Stress, anxiety and depression

among parents of children with autism spectrum disorders.

Australian Journal of Guidance & Counselling, 14, 151–161. Blacher, J., & McIntyre, L. L. (2006). Syndrome specificity and

behavioural disorders in young adults with intellectual disability:

Cultural differences in family impact. Journal of Intellectual Disability Research, 50, 184–198.

Bruininks, R. H., Woodcock, R. W., Weatherman, R. E., & Hill, B. K.

(1996). Scales of independent behavior: Revised (SIB-R). Itasca: Riverside Publishing.

Carter, I. (2009). Positive and negative experiences of parents

involved in online self-help groups for autism. Journal on Developmental Disabilities, 15, 44–52.

Chandler, S., Charman, T., Baird, G., Simonoff, E., Loucas, T.,

Meldrum, D., et al. (2007). Validation of the Social Communi-

cation Questionnaire in a population cohort of children with

autism spectrum disorders. Journal of the American Academy of Child and Adolescent Psychiatry, 36, 1324–1332.

Clifford, T. (2011). Support groups for parents of children with autism spectrum disorders: Predictors and effects of involvement (Doctoral Dissertation). Retrieved from http://hdl.handle.net/

1974/6561.

Cohen, S., & Wills, T. A. (1985). Stress, social support and the

buffering hypothesis. Psychological Bulletin, 98, 310–357. Corsello, C., Hus, V., Pickles, A., Risi, S., Cook, E. H, Jr, Leventhal,

B. L., et al. (2007). Between a ROC and a hard place: Decision

making and making decisions about using the SCQ. Journal of Child Psychology and Psychiatry, 48, 932–940.

Dabrowska, A., & Pisula, E. (2010). Parenting stress and coping

styles in mothers and fathers of pre-school children with autism

and down syndrome. Journal of Intellectual Disability Research, 54, 266–280.

Daniels, A. M., Rosenberg, R. E., Anderson, C., Law, J. K., Marvin,

A. R., & Law, P. A. (2012). Verification of parent-report of child

autism spectrum disorder diagnosis to a web-based autism

registry. Journal of Autism and Developmental Disorders, 42, 257–265.

Eisenhower, A. S., Baker, B. L., & Blacher, J. (2005). Preschool

children with intellectual disability: Syndrome specificity,

behaviour problems, and maternal well-being. Journal of Intellectual Disability Research, 49, 657–671.

Faul, F., Erdfelder, E., Buchner, A., & Lang, A.-G. (2009). Statistical

power analyses using G*Power 3.1: Tests for correlation and

regression analyses. Behavior Research Methods, 41, 1149– 1160.

Faul, F., Erdfelder, E., Lang, A.-G., & Buchner, A. (2007). G*Power

3: A flexible statistical power analysis program for the social,

behavioral, and biomedical sciences. Behavior Research Meth- ods, 39, 175–191.

Fontana, C. A., Fleischman, A. R., McCarton, C., Meltzer, A., &

Ruff, H. (1988). A neonatal preventive intervention study: Issues

of recruitment and retention. Journal of Primary Prevention, 9, 164–176.

Hamlyn-Wright, S., Draghi-Lorenz, R., & Ellis, J. (2007). Locus of

control fails to mediate between stress and anxiety and

depression in parents of children with a developmental disorder.

Autism, 11, 489–501. Kerr, S. M., & McIntosh, J. B. (2000). Coping when a child has a

disability: Exploring the impact of parent-to-parent support.

Child: Care, Health and Development, 26, 309–322. Lecavalier, L., Leone, S., & Wiltz, J. (2006). The impact of behaviour

problems on caregiver stress in young people with autism

spectrum disorders. Journal of Intellectual Disability Research, 50, 172–183.

Mandell, D. S., & Salzer, M. S. (2007). Who joins support groups

among parents of children with autism? Autism, 11, 111–122. Nachshen, J., Woodford, L., & Minnes, P. (2003). The family stress

and coping interview for families of individuals with develop-

mental disabilities: A lifespan perspective on family adjustment.

Journal of Intellectual Disability Research, 47, 285–290. Preyde, M., & Ardal, F. (2003). Effectiveness of a parent ‘‘buddy’’

program for mothers of very preterm infants in a neonatal intensive

care unit. Canadian Medical Association Journal, 168, 969–973. Rutter, M., Bailey, A., & Lord, C. (2003). Social communication

questionnaire. Los Angeles, CA: Western Psychological Services. Sharpley, C. F., Bitsika, V., & Ephrimidis, B. (1997). Influence of

gender, parental health, and perceived expertise of assistance

upon stress, anxiety, and depression among parents of children

with ASD. Journal of Intellectual and Developmental Disabil- ities, 22, 19–28.

Singer, G. H. S., Marquis, J., Powers, L. K., Blanchard, L., Divenere,

N., Santelli, B., et al. (1999). A multi-site evaluation of parent to

parents programs for parents of children with disabilities.

Journal of Early Intervention, 22, 217–229. Smith, K., Gabard, D., Dale, D., & Drucker, A. (1994). Parental

opinions about attending parent support groups. Children’s Health Care, 23, 127–136.

1674 J Autism Dev Disord (2013) 43:1662–1675

123

Solomon, M., Pistrang, N., & Barker, C. (2001). The benefits of

mutual support groups for parents of children with disabilities.

American Journal of Community Psychology, 29, 113–132. Spielberger, C. D. (1983). Manual for the state-trait anxiety

inventory. Palo Alto, CA: Consulting Psychologists Press. Spielberger, C. D., Ritterband, L. M., Reheiser, E. C., & Brunner, T.

M. (2003). The nature and measurement of depression. Interna- tional Journal of Clinical and Health Psychology, 3, 209–234.

Troester, J. D. (2000). A parent support group project in special

education. Journal of Child and Adolescent Group Therapy, 10, 57–64.

Vaux, A. (1988). Social support: Theory, research and intervention. New York: Praeger Publishers.

Viecili, M. A., Weiss, J. A., & Lunsky, Y. (2010, November). Benefits of parents support groups: Where we’re seeing change. Poster presented at the Geneva Centre for Autism International

Symposium, Toronto, Ontario, Canada.

J Autism Dev Disord (2013) 43:1662–1675 1675

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