Journal of Pediatric Nursing (2012) 27, 632–641
Caregiver Perspectives on Unintentional Injury Risk in Children With an Autism Spectrum Disorder Rachel N.S. Cavalari MS a,⁎, Raymond G. Romanczyk PhD, BCBA-D b a
Clinical Psychology, Binghamton University-State University of New York, Department of Psychology, Binghamton, NY Institute for Child Development, and Binghamton University-State University of New York, Binghamton, NY
b
Key words: Autism spectrum disorders; Unintentional injury; Injury risk; Patterns of injury
Unintentional injury risk research for children with an autism spectrum disorder (ASD) is currently limited. This article presents findings from a two-phase investigation of caregiver perspectives regarding unintentional injury risk in children with an ASD. Results indicate that children with an ASD exhibit elevated rates of risk-taking behaviors compared with peers, which increases the likelihood of more frequent and severe injuries. In addition, although ASD symptom severity positively correlated with risk-taking behavior and frequency of injury, children with an ASD were rarely rated as high risks for injury by caregivers. Implications are discussed in the context of pediatric health service provision. © 2012 Elsevier Inc. All rights reserved.
ACCORDING TO THE Centers for Disease Control and Prevention, Autism and Developmental Disabilities Monitoring Network (2009), unintentional injuries are the leading cause of hospitalization and death for children in the United States. In fact, childhood unintentional injuries are responsible for approximately 9.2 million emergency room visits annually (Centers for Disease Control and Prevention, National Center for Injury Prevention and Control, 2001, 2007, 2009; Home Safety Council, 2002; Phelan, Khoury, Kalkwarf, & Lanphear, 2001; Runyan et al., 2005; Tinsworth & McDonald, 2001). Previous research regarding typically developing children has revealed that being male, aged 5 years old through adolescence, with low inhibitory control and high hyperactivity, exposure to hazardous environments, and diagnosis of a physical disability or psychological disorder significantly increase the likelihood of severe injury and death (Bradbury, Janicke, Riley, & Finner, 1999; Morrongiello, Ondejko, & Littlejohn, 2004; Morrongiello, Corbett, McCourt, & Johnston, 2006; Morrongiello & Matheis, 2007a, 2007b; Schwebel, Brezausek,
⁎ Corresponding author: Rachel N.S. Cavalari, MS. E-mail address:
[email protected] (R.N.S. Cavalari). 0882-5963/$ – see front matter © 2012 Elsevier Inc. All rights reserved. http://dx.doi.org/10.1016/j.pedn.2011.07.013
Ramey, & Ramey, 2004; Schwebel & Gaines, 2007; van Aken, Junger, Verhoeven, van Aken, & Dekovic, 2007; Xiang, Stallones, Chen, Hostetler, & Kelleher, 2005). Although children with neurodevelopmental disabilities frequently exhibit many of the identified characteristics that elevate childhood injury risk, very few researchers have addressed injury risk for children with developmental delays.
Autism Spectrum Disorders In particular, children with an autism spectrum disorder (ASD), which includes autistic disorder, Asperger's disorder, and pervasive developmental disorder—not otherwise specified (PDD-NOS), have received relatively limited attention in the childhood injury literature (Johnson & Myers, 2007). Children with an ASD exhibit impairments in communication and social interaction and engage in stereotyped or repetitive behaviors, interests, or activities often accompanied by co-occurring associated features, such as attention problems (Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, Text Revision [DSM-IV-TR]; American Psychiatric Association, 2000). By definition, children with an ASD have less advanced age-appropriate
Child Safety and Autism skills (e.g., communication, social skills, or motor skill ability) that could predispose them to injuries that fall earlier along the developmental continuum. Therefore, marked developmental delays might prolong exposure to injuries such as drowning or suffocation, which are more common at younger ages in typically developing children. Interestingly, previous studies have shown that children who display similar isolated developmental characteristics as those exhibited as a symptom constellation by children with an ASD are at increased risk for injury (Johnstone, Barry, & Clarke, 2007; Morrongiello et al., 2006; Rowe, Maughan, & Goodman, 2004; Xiang et al., 2005; Rubia, Smith, & Taylor, 2007; Sherrard, Tonge, & Ozanne-Smith, 2002). With regard to morbidity of injury, children with an ASD are at least two to three times more likely to experience an injury requiring medical attention than typically developing peers, with higher rates of emergency room treatment for traumatic brain injury and severe bodily injury (Lee, Harrington, Chang, & Connors, 2008; McDermott, Zhou, & Mann, 2008). Further, children with an ASD are admitted for poisoning-related treatment at greater than seven times the rate of typically developing children (McDermott et al., 2008). Researchers have also suggested that children with an ASD have a reduced life expectancy compared with typically developing peers, with seizures, nervous system dysfunction, drowning, and suffocation accounting for death at more than three times the rate expected in the general population (McDermott et al., 2008; Shavelle, Strauss, & Pickett, 2001). In fact, children with an ASD between the ages of 5 and 10 years have standardized mortality ratios five times higher than expected for their age, with females representing 16 times greater risk (Shavelle et al., 2001). Given consistent findings in the literature specifying typically developing males as having greater injury risks than females, elevated fatality risk in females with an ASD is somewhat surprising. Current prevalence rates estimate that males are four times as likely as females to have an ASD, and one might expect that children with an ASD would be more susceptible to injury due to the higher male ratio in the population (CDC, 2009). However, previous research has also noted cognitive impairment as a consistent predictor of injury, and females with an ASD tend to be more cognitively impaired than males with an ASD (Lord, Schopler, & Revicki, 1982; Shavelle et al., 2001; Slayter et al., 2006; Volkmar, Szatmari, & Sparrow, 1993). Based on research regarding gender differences in ASD, it is possible that the protective factor of being female is offset by associated features of ASD, resulting in greater impairment in females and increased injury risk. Until appropriate research is conducted, the role of gender in predicting injury for children with an ASD remains poorly defined, although a thorough investigation would necessitate consideration of potential interactions between gender and associated features of ASD (i.e., inattention, cognitive deficits, hyperactivity, etc.).
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Caregivers of Children With an ASD Despite recent efforts to investigate fatal and nonfatal injury in children with an ASD, there have been no studies to date that address caregiver perspectives on childhood unintentional injury risk. As previously stated, although children with an ASD share risk factors for unintentional injury with typically developing peers, it is unclear whether these factors increase likelihood of injury in a similar pattern. Further, current evidence suggests that children with an ASD are injured more frequently, with greater severity and a higher likelihood of fatality, indicating the need for special consideration of possible risk factors implicated in unintentional injury occurrence. Because of the absence of research with caregivers of children with an ASD, it is unclear how caregiver perceptions regarding injury risk relate to actual risk factors for unintentional injury occurrence.
The Current Study The purpose of the current two-phase study was to gather information on children with an ASD through adult caregiver report to investigate potential patterns of injury in this underresearched area of child safety. Phase I served as an exploratory investigation to determine existing relationships between caregiver perceptions of injury risk and the presence of injury risk factors for children with an ASD. It was hypothesized that children with an ASD would engage in more risk-taking behaviors compared with peers without ASD. Further, it was proposed that caregiver endorsement of more risk-taking behaviors would predict more frequent and severe injuries for children with an ASD compared with peers. Finally, it was hypothesized that caregivers would rate children with an ASD as higher risks for injury based on documented higher rates of emergency medical care for unintentional injury compared with peers, and this relationship would be moderated by the amount of risk-taking behaviors. The purpose of Phase II was to extend findings from Phase I by investigating the extent to which ASD symptom severity related to caregiver perspectives on injury risk. As previously stated, recent data suggest an increased likelihood of injury in the presence of symptom constellations similar to those exhibited by children with an ASD. Therefore, in Phase II, it was hypothesized that children with increased ASD symptom severity would engage in more risk-taking behaviors and sustain more frequent and severe injuries than children with less severe symptom impairment.
Phase I Method Participants After receiving institutional review board approval from the Binghamton University Human Subjects Research and
634 Review Committee, participants were recruited from the general population by requesting permission from 15 local, national, and online parent and teacher organizations to distribute flyers at hosted events and support groups, with permission from the directors or editors at each site. A total of 10 organizations agreed to distribute flyers. In addition, various research organizations posted the study description on their Webpage listing of current research for interested families. Further advertising also involved placing advertisements in professional news circulations, specifically Autism Spectrum News, and providing flyers to potential participants during public outreach activities and national conferences. Participants were recruited based on selfreferral, demonstrated by navigating to and completing the survey online, after viewing the circulated flyer or online research posting. The investigators had no direct contact with participants at any time. Inclusion criteria limited participation to parents and service providers older than 18 years who were supervisors of children up to age 12 years. A nonrestricted sample of caregivers from multiple settings was used given the exploratory nature of the investigation. Participants were designated as parents or service providers based on their self-selected completion of either the parent or service provider survey form, and each participant could report individualized information on unintentional injuries for up to eight children within each survey form. Although an efficient means of data collection, this format precludes designating parents and service providers as caregivers for only one group of children (i.e., ASD vs. no ASD). Parents were asked to report only on children within their home during the previous 6 months, and service providers were asked to report solely on children for whom they had provided direct service during the previous 6 months. The final sample included 79 adult participants, consisting of 26 service providers and 53 parents between the ages of 18 and 70 years. Review of sample demographics indicated that 84% of the sample was female, and 90% of participants endorsed their race or ethnicity as Caucasian/White, Non-Hispanic.
Measures and Procedure Participants in this study completed an online, anonymous survey through the main Web site of the Institute for Child Development. The survey included a participant demographic information form (8 items), the Child Safety and Injury Questionnaire (CSIQ), and the Injury Behavior Checklist (IBC; Speltz, Gonzales, Sulzbacher, & Quan, 1990). The CSIQ is a 40-item questionnaire developed for this study to obtain information from adult participants regarding caregiver concerns for child safety, patterns of injury shown to predict injury risk in typically developing children, and perceptions of injury risk over a 6-month period prior to participation. This form also asked participants to indicate whether the children they chose to
R.N.S. Cavalari, R.G. Romanczyk report on had one of the three diagnoses subsumed under ASD, similar to the approach used by Lee et al. (2008). Psychometric properties of this measure are not available because the questionnaire was developed and implemented for the first time in this study. The IBC (Speltz et al., 1990) is a 24-item questionnaire that assesses children's risk-taking behaviors (i.e., runs out into the street, plays carelessly around water hazards). Preliminary studies suggest that the IBC has acceptable reliability (internal consistency = .87; 1-month test–retest = .81) and is able to significantly differentiate between children who are injured two or more times from children who are injured less often in both preschool and school-age samples (Potts et al., 1997; Speltz et al., 1990). In this study, the IBC was used to provide participants with a list from which they were asked to endorse whether the child engaged in each of the 24 items reflecting risk-taking behavior. Participants accessed the URL address (http://icd. binghamton.edu) where they selected the link to reflect their appropriate role category and were then provided with instructions and the survey form. Consent was inferred by the individual's decision to complete the survey. Because this phase of the study was anonymous, it was not possible to determine if participants withdrew from the study without submitting their answers.
Phase I Results Demographics Chi-square analyses were used to determine variability in demographic data that might impact subsequent analyses. The initial sample included data for 188 children (ASD, n = 90; no ASD, n = 98); however, participants in the no ASD group reported on children aged birth to 2 years more frequently than in the ASD group, χ 2(4, N = 188) = 13.22, p = .10. Based on this difference and the low likelihood of diagnostic accuracy in this age group, the 0- to 2-year age group was excluded from subsequent analyses to control for Type I error, resulting in a final sample of 165 children between the ages of 3 and 12 years (ASD, n = 86; no ASD, n = 79). Demographic variables are presented in Table 1. There were no significant differences between the number of children with and without an ASD reported by survey type (parents vs. service providers), χ 2(1, N = 165) = 0.38, p = .54. Most children in the sample were male (62%), but no significant differences were identified between survey types regarding gender of the rated child, χ 2(1, N = 159) = 1.53, p = .22. Importantly, children with an ASD demonstrated expected ratios of males to females similar to current prevalence rates, whereas gender was equally distributed in the no ASD group, χ 2(1, N = 159) = 14.85, p b .001. The sample was primarily Caucasian/White (83%), with the
Child Safety and Autism Table 1
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Child Characteristics Phase I ⁎
Variable
Sample size (n) Child age 0–2 3–5 6–8 9–10 11–12 Diagnosis Autistic d Asperger's disorder PDD-NOS Gender Male Female Race/ethnicity White Black/African American American Indian/Alaskan Native Asian Hispanic/Latino Other/mixed race Injury risk Low Medium High Injury rate (6 months) 0 injuries 1–3 injuries 4–6 injuries ≥7 injuries Injury severity Mild (slight tissue damage) Moderate (damage N24 hours) Severe (emergency medical)
Phase II
ASD
No ASD
ASD Only
90 (86)
98 (79)
35
4 22 31 17 16
19 30 21 16 12
0 13 16 3 3
76 (72) 3 (3) 11 (11)
– – –
21 6 7
69 (66) 19 (18)
48 (37) 45 (38)
29 6
78 (75) 2 (2) 1 (1)
79 (62) 5 (4) 4 (4)
– – –
0 (0) 5 (5) 4 (3)
1 (1) 3 (2) 6 (6)
– – –
28 (26) 36 (35) 21 (20)
8 (7) 31 (23) 58 (48)
11 19 5
20 (20) 42 (40) 11 (10) 17 (16)
27 (23) 55 (41) 10 (10) 6 (5)
3 21 6 4
41 (40) 29 (27) 10 (9)
54 (42) 16 (13) 3 (3)
26 6 2
⁎ Phase I values presented in table include initial sample and final sample with the 0–2 age group excluded in parentheses.
remaining portion composed of Black or African American, American Indian or Alaskan Native, Asian, Hispanic or Latino, and other or mixed-race individuals. Autistic disorder accounted for a large proportion of the reported cases (84%) in the ASD group, followed by PDD-NOS and Asperger's syndrome.
Patterns of Injury Independent samples t tests were conducted to determine the relationship between ASD diagnosis and risk-taking behaviors, followed by multinomial logistic regression to assess the predictive power of an ASD diagnosis, age, and gender, when risk-taking behavior was entered as a
covariate. Dependent variables included injury rate (zero to seven or more injuries in the previous 6 months in ranked categories), injury severity (mild, moderate, and severe), and injury risk rating (low, medium, and high). Effect sizes are reported as odds ratios (ORs), and results for all tests were considered significant at the p b .05 level. Independent samples t tests revealed that the no ASD group (M = 3.23, SD = 3.99) displayed significantly fewer risk-taking behaviors compared with the ASD group (M = 5.87, SD = 4.95), t(158) = −3.76, p b .001. Multinomial logistic regression values can be found in Table 2. Model fit for all predictors was significant for injury rate, χ 2(18, N = 165) = 65.10 p b .001, indicating that the model was able to successfully distinguish children who displayed different rates of injury and correctly classify 55% of cases. There were no significant effects of age or gender when controlling for risk-taking behaviors and ASD diagnosis; however, a trend approaching significance was observed indicating that the likelihood of sustaining seven or more injuries was decreased by a factor of .10 in children between the ages of 3 and 5 years. Compared with children with no injuries, children with one to three injuries demonstrated an OR of 1.34, four to six injuries an OR of 1.58, and more than seven injuries an OR of 1.78 for risk-taking behavior. In other words, the likelihood of sustaining more frequent injuries increased with a child's engagement in more risk-taking behaviors. Notably, most children in the sample experienced low rates of injury (i.e., one to three injuries); however, children in the ASD group represented a slightly larger proportion of the cases that had sustained seven or more injuries. Despite this difference, no significant effects were detected with regard to increased likelihood of more frequent injury based on ASD diagnosis when controlling for other predictors. Model fit for all predictors was significant for injury severity, χ 2(12, N = 165) = 22.58, p = .03, indicating that the model was able to successfully discriminate between levels of injury severity and correctly classify 63% of cases. There was no significant effect of gender, but the odds of children in the 3- to 5-year age group sustaining a moderate injury were decreased by a factor of .26 times compared with mild injury. No other significant age effects were noted. Risk-taking behaviors also did not predict injury severity when controlling for other predictors in the model. Compared with children who sustained mild injuries, the odds of children in the no ASD group sustaining a severe injury were decreased by a factor of .23 compared with children in the ASD group. Importantly, the occurrence of severe injury during the 6 months prior to the study in either group was relatively rare. Model fit for all predictors was significant for injury risk rating, χ 2(12, N = 165) = 79.63, p b .001, indicating that the model was able to successfully discriminate between levels of risk ratings and correctly classify 62% of cases. No significant effects of age or gender were observed when controlling for other predictors. Compared with children
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Table 2
Multinomial Logistic Regression Coefficients and Related Statistics for Patterns of Injury—Phase I
Variable Injury amount ‡ 1–3 injuries Risk taking Age 3–5 years Gender ASD diagnosis 4–6 injuries Risk taking Age 3–5 years Gender ASD diagnosis ≥7 injuries Risk-taking Age 3–5 years Gender ASD diagnosis Injury severity § Moderate Risk taking Age 3–5 years Gender ASD diagnosis Severe Risk taking Age 3–5 years Gender ASD diagnosis Injury risk rating ll Medium injury risk Risk taking Age 3–5 years Gender ASD diagnosis High injury risk Risk taking Age 3–5 years Gender ASD diagnosis
B⁎
SE
z
p
OR
95% CI †
0.295 −0.469 −0.408 0.290
0.09 0.57 0.45 0.44
3.28 −0.83 −0.91 0.66
.001 .413 .366 .508
1.34 0.63 0.67 1.34
1.13–1.60 0.20–1.92 0.27–1.61 0.57–3.16
0.460 0.698 −0.434 0.651
0.11 1.21 0.67 0.66
4.18 0.58 −0.65 0.99
.000 .563 .515 .325
1.58 2.01 0.65 1.92
1.29–1.95 0.19–21.48 0.18–2.39 0.52–7.01
0.574 −2.293 −1.142 −0.478
0.11 1.20 0.75 0.78
5.22 −1.91 −1.52 −0.61
.000 .056 .125 .540
1.78 0.10 0.32 0.62
1.43–2.21 0.01–1.06 0.74–1.37 0.13–2.86
0.070 −1.359 0.809 −0.255
0.05 0.67 0.51 0.50
1.40 −2.03 1.59 −0.51
.176 .044 .112 .609
1.07 0.26 2.25 0.78
0.97–1.19 0.69–0.96 0.83–6.08 0.29–2.06
−0.169 0.831 −0.104 −1.459
0.11 1.71 0.70 0.77
−1.54 0.49 −0.15 −1.89
.109 .478 .882 .058
0.84 2.30 0.90 0.23
0.69–1.04 0.23–22.79 0.23–3.57 0.05–1.05
−0.150 0.874 −0.482 0.657
0.06 0.87 0.62 0.61
−2.50 1.00 −0.78 1.08
.012 .314 .439 .278
0.86 2.40 0.62 1.93
0.77–0.97 0.44–13.14 0.18–2.09 0.59–6.32
−0.529 −0.030 −1.104 1.401
0.10 0.96 0.69 0.66
−5.29 −0.03 −1.60 2.12
.000 .975 .109 .033
0.59 0.97 0.33 4.06
0.48–0.72 0.15–6.31 0.09–1.28 1.12–14.69
Note: Age 3–5 are presented in isolation due to no significant effects detected in other age groups. CI = confidence interval. ⁎ Four predictors entered simultaneously. † CIs are based on ORs. ‡ Reference category is 0 injuries. § Reference category is mild injury. ll Reference category is low injury risk.
rated as low risks for injury, the odds of being rated as a high risk for injury increased by a factor of 4.06 for children without an ASD compared with children with an ASD. Further, caregiver endorsement of more risk-taking behaviors for children decreased the odds of a medium injury risk rating by a factor of .86 and the odds of a high injury risk rating by a factor of .59. In summary, children with an ASD were less likely to be rated as high risks for injury compared with peers, with engagement in more risk-taking behaviors predicting decreased perceptions of injury risk.
Phase I Discussion Based on the results of Phase I, children with an ASD do appear to have different patterns of risk-taking behaviors, injury, and subsequent risk than children without an ASD. Surprisingly, children with an ASD were rarely rated as high risks for injury compared with children without an ASD, despite engaging in more risk-taking behaviors and exhibiting a tendency to sustain more frequent and severe injuries than peers. It is possible that the observed findings
Child Safety and Autism are due to the relatively low occurrence of actual severe, medically attended injuries in this sample. Relatedly, it is also possible that caregivers were including supervision variables in their estimates of each child's risk, which was not directly assessed in this study. That is, since they supervise more closely, the risk is perceived as low for the context rather than a rating of the child independent of supervision level. Finally, the significant heterogeneity in symptom presentation within ASD and absence of diagnostic information for children in the control group might have resulted in differential perspectives on injury risk that might be isolated through controlled research investigation.
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Phase II involved the evaluation of patterns of injury and ASD symptom severity through caregiver report in a second, separately recruited, sample of identified parents of children with an ASD. Parent report of child diagnosis was confirmed via standardized assessment (i.e., similar symptom constellations compared with children diagnosed with an ASD). The purpose of Phase II was to assess the relationship between symptom severity and patterns of injury to better understand the potential contribution of varying ASD symptom presentation on caregiver perspectives of injury risk.
The PDDBI (Cohen & Sudhalter, 2005) is a 188-item parent or caregiver rating scale designed to measure core symptoms associated with DSM-IV PDD diagnoses (ASD). The PDDBI generates five composite scores that are further subdivided into domains and clusters to align with specific characteristics associated with PDD symptoms. The five composite scores include the following: autism (AUTISM/C); approach withdrawal problems (AWP/C); repetitive, ritualistic, and pragmatic problems (REPRIT/C); expressive social communication abilities (EXSCA/C); and receptive expressive social communication abilities (REXSCA/C). Higher scores on the first three composites indicate greater impairment, whereas higher scores on the remaining two composites indicate greater competence. Importantly, the PDDBI is an assessment measure specifically standardized for children with an ASD (e.g., average T score range for children with an ASD = 40–60) and has acceptable internal consistency (α = .79–.97), test–retest reliability, and criterion-related validity based on observed correlations with the Autism Diagnostic Interview—Revised and Childhood Autism Rating Scales (Cohen, 2003; Cohen & Sudhalter, 2005). Participants were mailed informed consent forms and paper-and-pencil questionnaire packets including the three measures described above. All packets were completed in participants' homes and returned to the investigators by mail.
Phase II Method
Phase II Results
Participants
Demographics
Recruitment methods were duplicated from Phase I, but inclusion criteria specified that participants must be parents of children with an ASD between the ages of 2 and 12 years to focus on a subset of caregivers. In addition, direct contact with participants was initiated as part of a larger study. Participants included 35 parents of children diagnosed with one of the three DSM-IV disorders included in the category of ASD.
Demographic variables are presented in Table 1. The sample included data on 35 children with an ASD. As occurred in Phase I, most children in Phase II were diagnosed with autistic disorder, followed by PDD-NOS and Asperger's syndrome. One participant did not indicate child diagnosis on the protocols. Mean age of the sample was 7 years (range = 3–12 years), and 83% of the children were male. One-way analysis of variance, with effect size based on three groups and reported as partial eta squared (ηp2), indicated that children with Asperger's syndrome were older (M = 9.35, SD = 2.11) than children with autistic disorder (M = 6.18, SD = 1.59) and PDD-NOS (M = 7.23, SD = 2.83), F(2,31) = 23.84, p = .006, ηp2 = .28, in the current sample. Means and standard deviations for PDDBI composite scores were as follows: AUTISM/C (M = 53.48, SD = 11.82), AWP/C (M = 55.33, SD = 11.00), REPRIT/C (M = 54.85, SD = 11.14), EXSCA/C (M = 53.55, SD = 8.16), and REXSCA/C (M = 53.45, SD = 7.98).
Phase II
Measures and Procedure Phase II included a brief modified version of the CSIQ (B-CSIQ), the IBC (Speltz et al., 1990), and the PDD Behavior Inventory (PDDBI; Cohen & Sudhalter, 2005). The B-CSIQ included seven of the questions from the original CSIQ to assess the child's injury rate, overall severity of injury, caregiver estimate of the child's injury risk, and the child's knowledge of and ability to follow safety rules independently. Participants ranked their child on his or her knowledge of home safety rules and ability to follow them independently on a Likert-type scale from 1 to 5 (i.e., not at all to very well). The IBC was administered as described in Phase I.
Patterns of Injury Results for all tests were considered significant at the p b .05 level. Similar to Phase I, most children had been
638 injured between one and three times during the 6 months prior to the study, and injuries were mostly mild in severity. Participants most frequently rated children as being either low or medium risks for injury with engagement in risktaking behaviors ranging from 0 to 21 risk-taking behaviors per child (M = 7.86, SD = 5.03). Because of the small sample size noted for Phase II, data were not amenable to ordinal or multinomial logistic regression to demonstrate predictive value of the independent variables. Instead, Spearman's rank correlational analyses were used to assess relationships between injury rate, severity, risk rating, and amount of risk-taking behaviors as defined in Phase I, along with each child's level of knowledge for home safety rules, ability to follow the rules independently, and age. Injury severity did not display significant relationships with any variables of interest. As expected, knowledge of home safety rules was significantly related to the ability to follow the rules independently, rs(32) = .89, p b .001. Engagement in more risk-taking behaviors was associated with more frequent injuries, rs(33) = .54, p = .001; higher injury risk ratings, rs(33) = .66, p b .001; less knowledge of home safety rules, rs(32) = −.69, p b .001; and poorer ability to follow home safety rules independently, rs(33) = −.71, p b .001. Importantly, older children sustained less frequent injuries, rs(33) = −.52, p = .001; were rated as lower injury risks, rs(33) = −.43, p = .01; displayed better knowledge of home safety rules, rs(32) = .62, p b .001; and demonstrated better ability to follow the rules independently, rs(33) = .65, p b .001, compared with younger children.
Autism Symptom Severity Spearman's rank correlational analyses were used to assess relationships between patterns of injury and PDDBI composite scores, as well as each child's level of knowledge for home safety rules, ability to follow the rules independently, and age. Engagement in more risk-taking behaviors was related to increased ASD symptom severity as indicated by significant relationships with PDDBI composite scores as follows: AUTISM/C, rs(31) = .54, p = .001; AWP/C, rs(31) = .55, p = .001; REPRIT/C, rs(32) = .65, p b .001; EXSCA/C, rs(31) = −.52, p = .002; and REXSCA/C, rs(29) = −.55, p = .001. More frequent injuries were also associated with higher scores on REPRIT/C, rs(32) = .43, p = .01, and AWP/C, rs(31) = .44, p = .01, as well as poorer ability to follow home safety rules independently, rs(33) = −.42, p = .01. Higher injury risk ratings were related to lower scores on EXSCA/C, rs(31) = −.40, p = .02, and REXSCA/C, rs(29) = −.43, p = .02, as well as less knowledge of home safety rules, rs(32) = −.52, p = .002, and poorer ability to follow the rules independently, rs(33) = −.53, p = .001. Less knowledge of home safety rules was associated with increased ASD symptom severity as measured by AUTISM/C, rs(30) = −.51, p = .003; REPRIT/C, rs(31) =
R.N.S. Cavalari, R.G. Romanczyk −.43, p = .01; EXSCA/C, rs(30) = .61, p b .001; and REXSCA/C, rs(28) = .64, p b .001. Further, a child's ability to follow home safety rules independently was associated with lower ASD symptom severity as measured by AUTISM/C, rs(31) = −.39, p = .03; REPRIT/C, rs(32) = −.36, p = .04; EXSCA/C, rs(31) = .46, p = .006; and REXSCA/C, rs(29) = .49, p = .005. Scores on AWP/C were not related to knowledge of home safety rules, rs(30) = −.29, p = .11, or ability to follow the rules independently, rs(31) = −.24, p = .18. Finally, age was not significantly related to any of the PDDBI composite scores.
Phase II Discussion Based on the results of Phase II, children with more severe ASD symptomatology were more likely to engage in risk-taking behaviors and sustain more frequent injuries than children who were less impaired. Similar to Phase I, caregivers rated children with an ASD as low or medium risks for injury. Notably, children with better expressive and receptive social communication skills were perceived as lower risks for injury, possibly due to related competence in knowledge and ability to independently follow home safety rules. Further, older children were less likely to sustain frequent injury than younger children, with related lower injury risk ratings by parents. Because age was not significantly correlated with any of the PDDBI composite scores, it is possible that observed age effects in relation to patterns of injury are similar to those expected in the typically developing population. More specifically, caregiver perceptions of decreasing injury risk would be expected with increasing chronological age independent of child diagnosis.
General Discussion According to the results of this two-phase study, children with an ASD do appear to be at greater risk for unintentional injury due to engagement in high levels of risk-taking behavior, with subsequent increased potential for more frequent and severe injuries. In particular, children with more significant ASD symptom severity were more likely to engage in more risk-taking behaviors and sustain frequent injuries. As indicated by Inglese and Elder (2009), the recent growth in the prevalence rate of ASD increases the probability that pediatric nurses will encounter children with an ASD in the context of pediatric health care service settings. Data from the current study suggest that this frequency of contact might be significantly elevated due to a need for pediatric services to treat sequelae of unintentional injury. Further, given the relationship between ASD symptom severity and risktaking behavior, the likelihood of encountering a child
Child Safety and Autism with significant ASD symptom impairment is even greater in the context of acute injury trauma care. Therefore, pediatric nurses might fulfill a particularly important role in treatment of childhood injury for children with an ASD at all levels of pediatric health care. Results of this study highlight the unanticipated finding of low injury risk ratings by caregivers of children with an ASD, which is in contrast to anecdotal statements from parents and service providers in clinical and educational settings. In fact, caregivers across settings typically indicate injury and safety as a high priority concern for these children, which should elevate concern for the child and result in a higher level of risk rating. Given the observed findings, it is possible that caregivers estimate childhood injury risk by incorporating supervision and environmental variables that were not assessed in this study. For example, caregivers of children with an ASD might be aware of notable risk-taking behavior and alter aspects of supervision or implement prevention methods to decrease exposure opportunity to hazards. If caregivers of children with an ASD assume full responsibility for mediating injury risk, withdrawal of these supports with any magnitude could result in more frequent or severe childhood injuries. Knowledge of core ASD symptoms and awareness of family needs (i.e., parental stress, physical well-being, etc.) could be indispensible to pediatric nurses regularly emphasizing family-centered care. In fact, pediatric nurses might be in an ideal position to educate caregivers about risk factors for injury, thereby increasing awareness of prevention methods that could decrease the frequency and severity of injury often documented in the literature. Although patterns of injury typically follow a developmental trajectory, findings regarding age from Phase I and Phase II were somewhat mixed. In Phase I, children between the ages of 3 and 5 years were less likely to experience seven or more injuries or moderate injuries; however, in Phase II, older children were less likely to experience frequent injuries. Of course, Phase I age effects were observed when controlling for ASD diagnosis, whereas Phase II was a focal assessment of an ASD population. In addition, Phase II revealed that older children with an ASD were more likely to know home safety rules and be able to follow them independently, which also related to lower caregiver risk ratings. Nevertheless, further research is needed to assess the relationship between age and injury in children with an ASD due to inherent developmental delays that create discrepancies between developmental skills and chronological age. Emerging research in this area might reveal the importance of assessing caregiver knowledge of developmental norms during injury prevention education for families of children with an ASD. Although the role of child gender in injury risk for children with an ASD remains an important area of inquiry, a thorough investigation of the role of gender was deemed
639 beyond the scope of this study. That said, evidence from this study, including a subset of females with an ASD, suggests that children with an ASD possess characteristics indicating greater risk for injury in comparison to peers. Therefore, it seems prudent to assert that both male and female children with an ASD should be considered at greater risks for injury compared with typically developing peers until further research is conducted in this area. Relatedly, it is possible that the level of intellectual impairment, which is often correlated with language and communication skills, could better predict injury risk for children with an ASD. The current research did not assess intellectual ability, and further research is needed to determine the contribution of core symptoms and associated features of ASD to the occurrence of unintentional injury. In spite of the important findings of this study, several limitations should be noted. First, the chosen methods prohibited confirmation of diagnoses via standardized assessment, aside from measurement of ASD symptom severity in Phase II. Even if caregivers accurately reported diagnoses, the results of this study have limited generalizability to children with Asperger's syndrome or PDD-NOS due to a large proportion of children in both phases presenting with autistic disorder. Second, specific to Phase I, the anonymous nature of the online survey prevented identification of the relationship between children reported on by each participant (e.g. sibling, cousin, friend, classmate), which might have resulted in differential responses with regard to injury risk. Third, both parents and other caregivers provided perspectives on unintentional injury in Phase I, whereas Phase II focused on only parents of children with an ASD. These methods precluded each child from being evaluated by both their parent and service provider, so that dual perspectives could have been provided regarding each case. This would have created the opportunity for a more detailed comparison of risk for injury in varied settings. In addition, to refine the exploration of safety needs and related concerns for children with an ASD, it would be desirable to have direct behavioral observation added to caregiver report, although this would be a costly addition. Finally, the proposed influence of supervision and exposure opportunity should be assessed more fully to understand their interaction in predicting risk and preventing injury.
Conclusions Despite noted limitations in this study, the presented findings suggest that prevention and treatment of childhood injury might require more intensive services for children with an ASD. Importantly, this study served as a preliminary investigation to simultaneously assess rate and severity of injury, engagement in risk-taking behaviors, caregiver perceptions of injury risk, and relationships of
640 patterns of injury with symptom severity in children with an ASD. To reiterate the findings of this research, children with an ASD were found to ▪ engage in elevated rates of risk-taking behavior compared with peers; ▪ sustain frequent and severe injuries; and ▪ have increased likelihood of injury with greater symptom severity; but ▪ be rated as low risks for injury by caregivers. In conclusion, the specific developmental characteristics of children with an ASD, as well as severity of symptomatology, will need to be considered when implementing injury prevention programs to address unintentional injury risk and occurrence. Pediatric nurses are well equipped to play a pivotal role in parental education regarding childhood injury risk factors by highlighting developmentally appropriate choices to reduce likelihood of injury across multiple settings. Given the increasing emphasis on positive and relevant service provision to children with an ASD and their families in pediatric health care settings, injury prevention seems to be a logical component of family-centered care.
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