Professional Documents
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DOI 10.1007/s10826-010-9419-y
ORIGINAL PAPER
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cope with these stressors and their impact on the well-being Form, which aids clinicians to measure the type and
of the family. Common outcomes of stressors can include severity of crisis experienced by college students on a
increased parent stress (Saloviita et al. 2003), depression 10-point scale. The BFDS was also meant to be brief, so that
(Hastings and Brown 2002), marital discord and poor sib- even families in severe distress could complete it with ease.
ling adjustment (Prince 2007) and quality of life (Lee In this study, we present descriptive data on the BFDS
2009), reflecting an impact on the entire family. There are and evaluate its construct validity by studying its correla-
known processes that mediate the relation between stressor tion with related constructs. Findings are based on an
and outcome, which include coping styles (Hastings et al. online survey of caregivers of people with ASD, where we
2005), psychological acceptance (MacDonald et al. 2010), inquired into commonly known stressors, mediators, and
and self-efficacy (Hastings and Brown 2002). We also outcomes that have been highlighted in the literature. We
know that targeting the psychological processes that act as hypothesised that the caregiver responses on the BFDS
mediators, through interventions like mindfulness training, would be negatively correlated with helpful coping mech-
can have a substantial impact on the child and parent (e.g., anisms (family hardiness, and parent empowerment), and
Blackledge and Hayes 2006; Singh et al. 2010). positive adjustment (caregiver quality of life and positive
One impact of stressors that is highly relevant to sup- parenting experiences), and positively correlated with
porting these families, but has yet to be examined, is crisis. known stressors (severity of aggressive behavior, socio-
Within the context of adjustment to stressors, crisis can be economic status, negative life events) and problematic
considered both an event (the phenomenon of a crisis) and coping and outcomes (caregiver burden, worry, mental
a response to the phenomenon (Gilliland and James 1993, health problems).
as cited in Lewis and Roberts 2001). Crisis is defined as
An acute disruption of psychological homeostasis in
which ones usual coping mechanisms fail and there
Method
exists evidence of distress and functional impairment.
The subjective reaction to a stressful life experience
Participants
that comprises the individuals stability and ability to
cope or function. The main cause of a crisis is an
Participants included 164 parents of individuals with ASD
intensely stressful, traumatic, or hazardous event
from Canada, with 91% of the sample being mothers. Only
(Roberts 2000, p. 516).
one caregiver per family was able to participate in the
Although researchers have highlighted some of the survey. Parents were 2671 years of age (M age = 44.96,
processes that lead families of individuals with ASD or SD = 7.93), and children were 246 years of age (83%
other developmental disabilities to poor adjustment, none male; M age = 13.68, SD = 7.62). Diagnoses as reported
have examined the process of what leads them to crisis, by parents included Asperger Syndrome (26%), Autism
how families in crisis differ from those approaching crisis, (53%), and PDD-NOS (20%). Sixty percent of parents
or what families are like following a crisis. To date, noted their children had below average intellectual func-
researchers and clinicians lack a quick assessment instru- tioning. The vast majority of individuals with ASD were
ment to gauge the magnitude of a crisis experience from living at home (96%).
the perspective of the individuals in or approaching crisis Socioeconomic status was estimated based on the aver-
(Lewis and Roberts 2001). While excellent measures of age income associated with participants forward sortation
stress and coping in families exist, our clinical experience area of postal codes (first three digits), using Statistics
suggests that families with significant levels of crisis need Canadas 2006 Canadian Census (Statistics Canada 2006).
assistance to quickly convey information at service intake Participants average income ranged from $41,678 to
that can be meaningful to them and to clinicians. $230,740 CAD, with an overall average of approximately
The current study presents an initial attempt at mea- $81,762 CAD (Median = $77,084; SD = $25,855). Most
suring the subjective experience of crisis in families of participants lived in Ontario (78%), followed by Saskatch-
people with ASD. Our instrument, the Brief Family Dis- ewan (9%) and British Columbia (5%). English was the first
tress Scale (BFDS), was designed with specific criteria in language for 92% of the sample. With respect to ethnicity,
mind. Given Roberts (2000) definition of crisis, the mea- 89% of participants identified as European Canadian, 1.2%
sure was meant to assess the experience from the per- identified as Middle Eastern, 2% identified as African/
spective of the caregiver, and was placed along a West-Indian, 1.6% as South Asian, 2.4% identified as
continuum of distress, from mild stress to qualitatively Asian, 2.4% identified as Native Canadian, and .6% iden-
distinct and immediate periods of crisis. The continuum tified as Latin/South American. Approximately 6% of par-
was inspired by Myer et al. (1992) Triage Assessment ticipants identified as more than one ethnicity.
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J Child Fam Stud (2011) 20:521528 523
Family Hardiness
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J Child Fam Stud (2011) 20:521528 525
mental health got worse as a result of caring for their child mental health problems). Given the large number of anal-
with ASD, on a four-point scale from Not at all (1) to A yses, alpha was set at .01 to reduce the likelihood of Type I
lot (4). Parents who noted Not Sure were recoded as error (Perneger 1998). As shown in Table 1, significant
Not at All. moderate-sized correlations were found between all the
variables and crisis severity (magnitudes: .29.45; Cohen
Procedure 1988), except for positive parenting experiences (p = .08)
and SES (p = .88). Crisis level was not related to child
Parents were recruited through convenience sampling from age, r = .06, p = .45, parent age, r = -.06, p = .43, or
July 2009 to July 2010. An invitation to participate in an child gender, t (163) = -1.10, p = .27. Table 1 also
online survey was posted on several Canadian Asperger indicates how the stressor, coping, and adjustment vari-
and Autism advocacy websites (e.g., Autism Ontario, As- ables were related to each other, in expected directions.
perger Society of Ontario) and circulated through email Respondents were also categorized into crisis groups:
lists associated with these organizations. Parents were able No impairment (13; 34%), Moderate impairment (45;
to access the survey by clicking on a link in the body of the 50%), or Marked impairment (610; 16%). One-way
invitation. Parents were also able to send the invitation to ANOVAs confirmed significant differences based on crisis
other parents of children with ASD. If they wished to fill groups across all of the variables, except for positive par-
out a hardcopy questionnaire, a mailing address was pro- enting experiences and SES, listed in Table 2. Post hoc
vided. The York University and Centre for Addiction and analyses indicated that parents at the Marked level of
Mental Health Research Ethics Boards approved this impairment had significantly more negative events, mental
research. We obtained informed consent from all partici- health problems, and burden compared to parents at No or
pants online. The survey took approximately 30 min to Moderate levels of impairment (all ps B .01). Parents at
complete. the Marked level also reported significantly lower levels of
quality of life and family hardiness compared to parents at
both other levels (both p B .001).
Results
Stressors
1. Problem behavior .38**
2. Negative life events .42** .17
3. SES .02 -.04 -.04
4. Difficulty paying bills (rho) .33** .30** .33** -.07
Coping
5. Worry .30** .09 .21* -.01 .08
6. Hardiness -.44** -.15 -.28** -.18 -.17 -.23*
7. Empowerment -.34** -.17 -.12 -.02 -.21* -.31** .42**
Adjustment
8. Mental health problems .45** .33** .35** .13 .30** .37** -.41** -.49**
9. Worsening mental health (rho) .36** .31** .16 .09 .13 .23* -.26** -.27** .58**
10. Burden .38** .26* .24* .19 .12 .49** -.33** -.47** .60** .50**
11. Quality of life (rho) -.52** -.14 -.42** -.07 -.40** -.39** .31** .38** -.50** -.30** -.48**
12. Positive parenting experience .14 -.01 .04 .05 -.01 .15 -.29** -.39** .26** .21* .26** -.22*
* p B .01, ** p B .001
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526 J Child Fam Stud (2011) 20:521528
We also examined whether the scale could validly cate- complete an online survey. It is important to note that the
gorize families into groups who differ on a number of relations are not close to being perfectly linear, with
relevant positive and negative constructs in expected intercorrelations among variables varying considerably.
directions. Given the community sample used in the current Together, this suggests that the crisis measure is not
research and that the study was voluntary and online, it is redundant with any other measure and that there is not just
not surprising that only 16% of our sample reported what one latent variable underlying the pattern of findings. It is
we view as a Marked level of impairment (being close to or likely that stressors have an additive and interactional
in crisis), reflected by a score of 6 or greater on the scale, effect upon a familys failure to cope and resultant crisis
and that the majority of our sample experienced a Mod- (McCubbin and McCubbin 1987), and that a combination
erate level of impairment (50%). It should be noted that of predictors would account for more of the variance in a
what we refer to as Moderate impairment constitutes an familys crisis rating on the BFDS than any single variable.
experience of stress in a family that is managing with That is, a familys experience of crisis is related to the
significant effort (e.g., Things are very stressful, but we combination of demands placed upon the family, balanced
are getting by with a lot of effort). Such a large per- by the capabilities of the family system to adjust to those
centage of Moderate impairment suggests that even in a demands and the meaning that the family places on their
community sample, many families of individuals with ASD situation (Patterson 1988).
experience significant distress (Baker-Ericzen et al. 2005). Our findings have a number of limitations. As with all
If data were collected from tertiary-level or crisis-related cross-sectional research, it is not clear whether the various
services, we might expect to find a higher percentage of stressors lead to crisis, or if the crisis itself offers a lens that
Marked impairment (Weiss and Lunsky 2010). makes life appear more stressful and less positive. Simi-
The correlations reported in the current study are in the larly, it is not clear whether crisis leads to lower quality of
expected directions, and appear to be of moderate strength, life and more mental health issues or if mental health issues
with p-values that surpass a conservative alpha, even with a and low quality of life are what make some families in
convenience sample of families able and willing to difficult situations rate themselves as feeling as though they
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