Autism-specific parenting self-efficacy: An examination of the role of parent-reported intervention involvement,satisfaction with intervention-related training,and caregiver burden

Abstract

Parenting self-efficacy, described as the beliefs parents hold about their ability to successfully parent their children, has been shown to support parent and child well-being. Parents of children with autism spectrum disorder face disproportionately high levels of demand both as caregivers, and as partners in multiple, complex, intervention programs. This study examines the relationship between parents’ experiences with their child’s interventions—specifically their sense of involvement in treatment and satisfaction with intervention-related training—and their confidence in parenting a child with autism spectrum disorder, defined as autism-specific parenting self-efficacy. Participants (N = 438, 93% mothers of children with autism spectrum disorder aged 2–17 years) completed our novel autism-specific parenting self-efficacy scale and rated their experience of involvement in their child’s interventions and satisfaction with intervention-related training across a range of common autism spectrum disorder–related treatments. Respondents also completed a caregiver burden scale. Findings indicate that parents who report greater involvement in their child’s interventions, and note greater satisfaction with intervention-related training, also report greater autism-specific parenting self-efficacy. Parents who report greater financial and social burden report lower autism-specific parenting self-efficacy. We propose that these results are important in creating intervention experiences that foster parental self-efficacy through involvement, productive training experiences, and addressing parental burden.

Lay abstract

What is already known about the topic?

Parents of children with autism experience enormous challenges managing the complex needs of caring for their children. This includes coordinating multiple and complex therapies and acting as partners in treatment. Parenting self-efficacy is the confidence a person has in their ability to manage the tasks that are part of raising a child. People who have more confidence, or greater parenting self-efficacy, often feel less stressed and are more able to manage the demands of family life. This is particularly important for parents with children who have autism spectrum disorder, since they experience more parenting pressures. Although a lot is known about parenting self-efficacy in parents of neurotypical children, we do not know enough about how to help parents of children with autism spectrum disorder develop greater parenting self-efficacy.

What this paper adds?

This study shows that parents gain a greater sense of parenting self-efficacy when they feel more involved in their child’s therapy and are more satisfied with the training they receive as part of these therapies. We also find that feeling pressure related to being a caregiver of a child with autism spectrum disorder can undermine autism-specific parenting self-efficacy. However, parents’ sense of confidence was not limited by the severity of their child’s symptoms.

Implications for practice, research, or policy

The results suggest that there is an opportunity to help parents develop a greater sense of confidence in their ability to manage the complexities of raising a child with autism spectrum disorder by helping them feel more involved in treatment and by creating intervention-related training experiences that are more satisfying. Providers might also help by taking time to address the challenges and pressures that parents are experiencing, and helping them find ways to deal with these challenges. We suggest that there needs to be more research exploring how providers can best design interventions that support autism-specific parenting self-efficacy as a way of improving parental and child well-being.

Keywords

autism spectrum disorder caregiver burden parent training parenting parenting self-efficacy

Parents of children with autism spectrum disorder (ASD) report higher levels of stress than parents of neurotypical children, children with Down syndrome, cystic fibrosis, cerebral palsy, or intellectual disability (Eisenhower et al., 2005; Hayes & Watson, 2013; Padden & James, 2017). One proposed source of parental stress among this population is the management of complex and intensive intervention programs (Iadarola et al., 2018; Matson et al., 2009; Parker et al., 2020). As compared to individuals with other developmental disorders, individuals with ASD are high users of services and are often enrolled in three-to-seven different types of intervention simultaneously, requiring a commitment of many hours per week (Ruble & McGrew, 2007). These time demands lead to significant financial, emotional, and social stress, reflected in increased ratings of caregiver¹ burden (Cappe et al., 2018; Chan et al., 2018; Landon et al., 2018; Ooi et al., 2016). Beyond the demands of treatment involvement, Hayes and Watson (2013) also point to factors related to the ASD diagnosis specifically that are associated with a reduced quality of life and increased mental health challenges for parents of children with ASD (see also Estes et al., 2009; May et al., 2015; Tomeny, 2016; Vasilopoulou & Nisbet, 2016). Factors contributing to increased caregiver stress include ASD-related oppositional and restrictive/repetitive behaviors, difficulties in social communication (Blacher & Baker, 2019; Tager-Flusberg et al., 2001; Volkmar et al., 2004), the psychiatric and medical comorbidities that are common in ASD (Hudson et al., 2018; Lyons et al., 2010; Pastor-Cerezuela et al., 2016; Rezendes & Scarpa, 2011; Simonoff et al., 2008), as well as the challenge of delayed diagnosis that can create anxiety and lack of confidence in parents who are struggling to develop effective parenting strategies without a full understanding of their child’s condition (Estes et al., 2009; Sofronoff & Farbotko, 2002).

Recent literature indicates an increased awareness of the cumulative and chronic impact of ASD-specific factors on caregivers’ daily lives (Cappe et al., 2018; Chan et al., 2018; Landon et al., 2018) and ability to successfully manage the unique demands of caring for a child with ASD (Iadarola et al., 2018; Keen et al., 2010; Lindsey & Barry, 2018). This recognition raises questions regarding the psychosocial factors that might support resilience in the face of these challenges (Bayat, 2007; Hayes & Watson, 2013; Lindsey & Barry, 2018; Prata et al., 2019). Parenting self-efficacy—the “expectation caregivers hold about their ability to parent successfully” (Jones & Prinz, 2005, p. 342)—has become increasingly important in this discussion (Chong & Kua, 2017; Kuhn & Carter, 2006).

Parenting self-efficacy—a social cognitive framework

The concept of parenting self-efficacy emerged from social cognitive theory (Bandura, 1977, 1997) as a sub-category of self-efficacy. Self-efficacy is broadly conceptualized as an individual’s confidence in their ability to successfully complete a task or achieve a desired outcome; a sense of confidence that comes from experiences of, for example, mastery in a given field or domain (Usher & Pajares, 2009). Bandura’s (1997) model proposes that self-efficacy beliefs shape behavior—influencing decision-making and goal-setting, and determining how long an individual will persist, particularly in the face of challenge (Bandura, 2001). Individuals with a high level of self-efficacy set more ambitious goals, persevere longer when they encounter obstacles, and maintain greater equanimity in moments of stress than those with lower levels of self-efficacy (Bandura, 2001; Pajares, 1996). As a result, efficacy beliefs explain positive psychosocial adjustment and well-being across a diversity of circumstances and domains of function (Bandura, 1997; Maddux, 2009).

Parenting self-efficacy—described as a “parent’s belief in his or her ability to influence the child and his or her environment to foster the child’s development and success” (Ardelt & Eccles, 2001, p. 945)—represents a domain-specific subset of self-efficacy and is found to be associated with adaptive parenting, psychosocial adjustment, and well-being in parents and children (Albanese et al., 2019; Coleman & Karraker, 1998; Jones & Prinz, 2005). More than two decades of research has demonstrated the association between greater parenting self-efficacy and lower levels of parental anxiety and depression (Cutrona & Troutman, 1986; Erdwins et al., 2001; Haslam et al., 2006), positive child outcomes (Coleman & Karraker, 2000; Teti & Gelfand, 1991; Troutman et al., 2012), and increased use of promotive and responsive parenting strategies, particularly in the context of environmental and social challenge (Albanese et al., 2019; Ardelt & Eccles, 2001; Jones & Prinz, 2005).

Autism-specific parenting self-efficacy

In the context of ASD, research on parental self-efficacy, although less extensive, reflects the broad pattern of findings in non-clinical populations. Parenting self-efficacy of mothers who have children with ASD is found to be associated with increased parental well-being, including lower levels of stress, anxiety, guilt, and fatigue (Giallo et al., 2013; Hastings & Brown, 2002; Lindsey & Barry, 2018; May et al., 2015; Rezendes & Scarpa, 2011). Hastings and Brown (2002) specifically note the importance of parenting self-efficacy in mediating the relationship between ASD-related challenging child behaviors and maternal anxiety and depression. Kuhn and Carter (2006) also found that parents with lower levels of parenting self-efficacy used less effective coping strategies and reported less agency in their parental role (see also Pastor-Cerezuela et al., 2016). Finally, Weiss et al. (2013) confirm the role of self-efficacy in supporting family hardiness and resilience in managing the stressors associated with ASD, thus contributing positively to overall family functioning (see also Farmer & Lee, 2011; Lindsey & Barry, 2018; Rezendes & Scarpa, 2011; Tomeny, 2016; Weiss et al., 2016).

This demonstrated relationship between parenting self-efficacy, well-being, and parental effectiveness suggests a need to better understand the factors that contribute to parenting self-efficacy among parents of children with ASD, particularly in the context of intervention (Chong & Kua, 2017; Hayes & Watson, 2013; Karst & Van Hecke, 2012; Kuhn & Carter, 2006; Prata et al., 2019). Parents of children with ASD report disproportionately high levels of demand in their role as caregivers (Chan et al., 2018; Hayes & Watson, 2013; Parker et al., 2020). Many interventions, particularly for young children with ASD, also rely heavily on “parents as partners” (Estes et al., 2019; Hastings & Symes, 2002; Pickles et al., 2016; Vibert et al., 2020). And although the benefits of parent-mediated intervention in educational and therapeutic settings are well-established (Garbacz et al., 2016; Matson et al., 2009), the challenge of participating in and coordinating these services creates an additional level of intervention-based complexity for parents (Gentles et al., 2020; Schreibman et al., 2015). Understanding the intervention and child/family factors that promote parenting self-efficacy for parents of children with ASD is important in better supporting parents and families through well-considered, family-centered, and efficacy-based, intervention design (Iadarola et al., 2018; Karst & Van Hecke, 2012; Keen et al., 2010; Kuhn & Carter, 2006; Ooi et al., 2016).

The current study

Despite the urgency of this issue, few studies examine parenting self-efficacy among families with ASD (Karst & Van Hecke, 2012), and those that exist have typically addressed the question in the context of individual, targeted interventions (e.g. Hastings & Symes, 2002; Iadarola et al., 2018; Keen et al., 2010; Kuhn & Carter, 2006; Shochet et al., 2019). Despite the engagement in multiple therapies that represents the typical experience of parents of children with ASD, these studies do not address potential sources of efficacy, or parental burden, across a diversity and range of interventions (Iadarola et al., 2018; Matson et al., 2009; Parker et al., 2020).

In addition, previous studies have typically employed parenting self-efficacy measures designed for non-clinical populations (e.g. Kuhn & Carter, 2006), limited to management of problem behaviors in a subset of the autism spectrum (Sofronoff & Farbotko, 2002), or measures of “therapeutic self-efficacy” (i.e. confidence in the ability to carry out therapeutic goals) rather than parenting self-efficacy (e.g. Haslam et al., 2006; Hastings & Symes, 2002; May et al., 2015; Weiss et al., 2013). As conceptualized by Bandura (1997), self-efficacy is highly domain specific. We propose that assessment of a sub-domain of self-efficacy, such as autism-specific parenting self-efficacy (PSEa), should be tailored to reflect this specificity (Bandura, 2006; Multon et al., 1991).

This study aims to build on the parenting self-efficacy literature by examining potential sources of PSEa—defined here as parents’ confidence in managing the particular challenges of raising a child with ASD—related to parents’ cumulative experiences with their child’s interventions. We specifically sought to investigate cumulative rather than specific intervention experiences. Management and involvement in multiple therapies is a common element of parenting a child with ASD (Matson et al., 2009), and we propose that this aggregated experience may differ from the effects of individual therapies (Iadarola et al., 2018; Parker et al., 2020). In addition, given the documented importance of the quality of therapeutic contact in the development of parenting self-efficacy, we frame our assessment of sources of intervention-related PSEa in terms of parents’ self-reported sense of involvement in therapy, and satisfaction with intervention-related training (Estes et al., 2019; Karst & Van Hecke, 2012; Renty & Roeyers, 2006). Finally, given the potentially complicating effect of ASD-related child and family sources of pressure on parental well-being and self-efficacy (Cappe et al., 2018; Hayes & Watson, 2013; Landon et al., 2018; Ooi et al., 2016), the study also explores the direct and potential moderating effect of self-reported caregiver burden—defined here as pressures or stressors experienced in association with the fulfillment of family and parenting responsibilities—on PSEa. In line with these aims, and reflecting the literature reviewed above, we make the following predictions:

Greater self-reported caregiver involvement across therapeutic interventions will explain greater PSEa.

Greater self-reported intervention-related training satisfaction will explain greater PSEa.

Child and family factors will explain PSEa as follows:

(a) Greater self-reported caregiver burden will explain lower levels of PSEa.

(b) Greater self-reported severity of ASD symptoms will explain lower levels of PSEa.

Method

Participants

Participants were 438 parents/caregivers² of children with ASD, recruited via the Interactive Autism Network (IAN). Caregivers represented a diverse age range (Table 1) and were residents of 47 US states and Puerto Rico. Eligibility requirements verified by IAN asked that participants were native or fluent English speakers and had a child with (1) a professionally confirmed diagnosis of any ASD, (2) a qualifying score on the Social Communication Questionnaire (SCQ; Rutter et al., 2003), and (3) no genetic or chromosomal abnormality, neurological syndrome, or severe hearing/vision impairment.

Table 1.

Caregiver demographic characteristics.

Demographic characteristics	n	%
Age (years)
25–34	54	12.3
35–44	190	43.4
45–54	161	38.8
55–64	31	7.1
65+	2	0.5
Relationship to child
Mother	409	93.4
Father	23	5.3
Grandmother	6	1.4
Additional children with ASD/developmental/medical diagnosis
Yes	117	26.7
No	170	38.8
No additional children in home	151	34.5
Education
High school/technical/associate	159	36.3
Bachelor’s/master’s/PhD	279	63.7

ASD: autism spectrum disorder.

The majority of respondents were mothers (93%), most of whom had at least a college-level education (64%). 66% of participants had more than one child living at home. 27% of participants had more than one child with ASD, a different developmental disorder, or a chronic medical condition (see Table 1). Participants with more than one child with ASD were instructed to respond based on their parenting experiences with one particular child—the child selected was up to respondents.

Children with ASD (81% male) ranged in age from 2 to 17 years M = 11.6, SD = 3.8), and had received a diagnosis of any ASD on average 8 years ago (range = 0–15 years; SD = 3.9). 33% of caregivers described their child’s symptoms as “very mild” to “mild” while 31% described their child’s symptoms as “moderately severe” to “extremely severe.” The majority (76%) of respondents characterized their child’s language as a fluent communicator in either phrases or complete sentences (Table 2). Symptom severity and language level were based on parent self-report. Weiss et al. (2016) note the validity of parental self-report and the extensive use of similar survey-based methods to study this population (see also Mazurek et al., 2012). Respondents reported that their children were currently enrolled in an average of 3.47 interventions (SD = 1.83).

Table 2.

Child demographic characteristics.

Demographic characteristics	n	%
Gender
Male	354	80.8
Female	80	18.3
Gender non-conforming	4	0.9
Caregiver-reported language abilities
Non-verbal	42	9.6
Uses some single words	63	14.4
Fluent communicator—multiple word phrases	95	21.6
Fluent communicator—complete sentences	238	54.3
Caregiver-reported ASD symptom severity
Very mild	39	8.9
Mild	107	24.4
Moderate	155	35.5
Moderately severe	66	15.0
Severe	55	12.5
Extremely severe	16	3.6

ASD: autism spectrum disorder.

Procedure

All procedures were reviewed and approved by the Emerson College Institutional Review Board (Emerson College IRB Protocol 19-007-F-E). Participants were recruited via email, distributed through the IAN network. They completed informed consent and the survey online. Participation was voluntary and anonymous, unless participants chose to submit their email address to be included in a small prize draw (97% of respondents chose to submit their email address). Surveys took between 10 and 15 min to complete. Only responses from individuals who completed the entire survey were included in the analysis (83% completion rate).

Measures

The survey was constructed to query five broad categories of information: family and child background factors; participation and sense of involvement in child’s current interventions; participation in, and satisfaction with, current therapy-related training; social and financial burden; and PSEa. The survey was piloted with parents of children currently receiving speech and language therapy, graduate speech-language pathology students with clinical and academic experience related to ASD, and non-clinical volunteers. Feedback from the pilot phase, particularly from parents of children receiving intervention for a communication disorder, allowed us to refine survey questions.

Family and child factors

Parents provided demographic information about themselves, their child with ASD, and their family structure. Parents also rated the severity of their child’s ASD symptoms using a six-point Likert-type scale, where 1 = very mild and 6 = extremely severe (M = 3.1, SD = 1.26). Similarly, parents rated their child’s language level using a four-point Likert-type scale, where 1 = non-verbal, 2 = uses some words; 3 = fluent communicator using phrases; and 4 = fluent communicator using complete sentences (M = 3.21, SD = 1.01).

Involvement in intervention

Participants were asked to select interventions their child is currently enrolled in from a list of 11 categories representing common and recognizable interventions for this population (Speech/Language Therapy, Occupational Therapy, Behavioral Therapy, Developmental Therapy, Medical/Pharmaceutical Intervention, Alternative Interventions, Early Intervention, Mental Health/Counseling, Special Diet, Physical Therapy, and Other). We included a range of interventions that children with ASD are frequently enrolled in, regardless of whether they are evidence-based, because they contribute to the overall experience of managing a child’s intervention program. For each selected category, respondents were asked to describe how many hours their child participated in this therapy per week and to rate how “personally involved” they felt, using a five-point Likert-type scale (0 = not involved and 4 = extremely involved). Ratings of self-reported involvement across interventions were combined to create an overall “intervention involvement” score (M = 2.28, SD = 1.02).

Satisfaction with intervention-related training

Participants who endorsed training as a component of at least one intervention (71% of respondents) were asked to rate their satisfaction with training within each intervention, using a five-point Likert-type scale, where 0 = very dissatisfied and 4 = very satisfied. Ratings across all interventions were combined into an overall “training satisfaction” score (M = 3.04, SD = 0.75).

Caregiver burden

Caregiver burden—defined as pressures or stressors experienced in association with the fulfillment of family and parenting responsibilities—was assessed using the Family Impact Questionnaire (FIQ; Donenberg & Baker, 1993). The FIQ is a widely used (Blacher & Baker, 2019; Hayes & Watson, 2013) 50-item self-report questionnaire that asks parents to assess a particular “child’s impact on the family compared to the impact other children his or her age have on their families,” using a four-point scale (0 = not at all and 3 = very much). For the purpose of the study, we used two of the six scales—the “impact of social relationships” and “financial impact” sub-scales.³ Item scores from the “social relationships” (7 items; M = 1.22, SD = 0.80) and “financial burden” (10 items; M = 1.51, SD = 0.82) were combined to create a total mean caregiver burden score (M = 1.33, SD = 0.71). Cronbach’s alphas for the social and financial burden sub-scales, and for the overall burden scale, in this study, were 0.92, 0.84, and 0.91, respectively.

Autism-Specific Parenting Self-Efficacy Scale (PSEaS)

We developed the Autism-Specific Parenting Self-Efficacy Scale (PSEaS), a 17-itemmeasure of caregivers’ confidence in their ability to manage the unique parenting challenges of raising a child with ASD (Supplemental Appendix 1). Existing scales offer broad measures of parenting self-efficacy (e.g. Parenting Sense of Competence Scale (PSOC); Gibaud-Wallston & Wandersman, 1978 and Maternal Efficacy Scale (MSE); Teti & Gelfand, 1991) and parental confidence in assuming a therapeutic role with their child (e.g. Hastings & Brown, 2002; Hastings & Symes, 2002); however, they do not specifically address parental confidence in their ability to manage the wide range of distinctive interventions and advocacy challenges associated with raising a child with ASD. Bandura (2006) and others (e.g. Multon et al., 1991; Zimmerman & Cleary, 2006) emphasize the importance of tailoring efficacy judgments to “the domain of functioning and tasks under investigation” (Pajares, 1996, p. 5). For the purpose of the study, therefore, and reflecting the domain-specific nature of self-efficacy (Bandura, 1997), we constructed a measure of parental confidence specific to managing the challenges associated with raising a child with ASD.

The PSEaS was developed with reference to existing parenting self-efficacy scales, including those related to parenting a child with medical needs (e.g. the Parent Activation Measure for Developmental Disabilities (PAM-DD); Hibbard et al., 2004), and in consultation with experienced speech-language pathologists, clinical instructors in a graduate speech and language clinic, and a developmental psychologist with extensive experience working with children with ASD. We asked these clinicians (N = 20) to identify “qualities that make parents well-prepared to advocate for their child with autism and navigate the world of autism intervention.” We transcribed clinician responses and categorized statements into 17 autism-specific parenting themes. Each theme was converted into an affirmative efficacy statement with illustrative example, for example, “I feel confident that I can advocate for my child and my family in social spaces. (for example: educate other people about ASD and my child, manage other people’s comments or assumptions).”

Survey participants rated their agreement with each of the 17 statements using a five-point Likert-type scale (1 = strongly disagree and 5 = strongly agree). We calculated a total PSEa score by summing responses across all 17 items (M = 4.06; SD = 0.59). Cronbach’s alpha for the scale was 0.91, indicating a high level of internal consistency across scale items (Cortina, 1993). Factor analysis (varimax rotation) confirmed a satisfactory degree of conceptual cohesion and identified one dominant component that spoke to parents’ immediate efforts to directly manage and respond to the needs of a child with ASD (accounting for 43% of the variance) and a secondary component reflecting parents’ evaluation of their ability to effectively participate and advocate for their child in the context of intervention (accounting for 8% of the variance). Results from the Kaiser–Meyer–Olkin (KMO) measure of sampling adequacy (Kaiser, 1974) confirmed an adequate sample to produce reliable results, KMO = 0.94.

Results

Analytic strategy

We used a series of linear regressions to examine the effect of (1) parent-reported involvement in intervention, (2) satisfaction with intervention-related training, (3) caregiver burden, and (4) ASD symptom severity, on caregivers’ self-reported PSEa. In a second series of regressions, we examined the potential moderating effect of Caregiver Burden on Involvement and Intervention-Related Training Satisfaction in explaining PSEa. Data were screened for normality, and outliers removed as indicated. Evaluation of skewness indicated that distribution of key variables fell within a range of −0.8 to 0.8, suggesting a moderate skew, but within acceptable levels to support the analysis. All variables were mean centered and assessed for collinearity. In examining the relationship between intervention involvement and PSEa, we controlled for self-reported hours spent in therapy to distinguish between contact time and quality of contact.

Involvement in therapy and satisfaction with intervention-related training

We used a linear regression to test the hypothesis that parents’ self-reported sense of involvement in therapeutic interventions would explain their PSEa. For the purpose of the regression, the involvement variable was mean-centered, and we controlled for self-reported hours spent in therapy. Results indicated a significant main effect for parental involvement such that parents who reported a greater sense of engagement with therapy reported higher levels of confidence in their ability to perform tasks specifically associated with raising a child with ASD (Table 3). Overall, the model accounted for 11% of the variance in PSEa, representing a small to medium effect size (f² = 0.12; Kirk, 2003). Given that self-reported hours engaged in therapy showed no relationship with PSEa, and did not significantly contribute to this model, we can assume that parents’ sense of involvement in their child’s intervention, as opposed to the time spent engaged in therapy, contributed to their PSEa.

Table 3.

Linear regression analysis explaining autism-specific parenting self-efficacy (PSEa) from involvement in therapy, controlling for total hours in therapy.

	PSEa
	β	b	SE	t(411)	p	95% CI
Intercept		4.05	0.03	145.72	<0.001	[3.99, 4.10]
Involvement in therapy	0.34	0.20	0.03	7.18	<0.001	[0.14, 0.25]
Total hours in therapy	−0.02	−0.00	0.00	−0.38	0.708	[−0.004, 0.003]

SE: standard error; CI: confidence interval.

We also used linear regression to test the hypothesis that parents’ self-reported satisfaction with therapy-related parent training would explain PSEa. The training satisfaction variable was mean-centered, and we found a significant main effect for parental training satisfaction such that parents who reported greater satisfaction with training also reported higher levels of PSEa (Table 4). Parents’ self-reported training satisfaction accounted for 14% of the variance in PSEa, representing a medium effect size (f² = 0.16). A comparison of PSEa scores for participants who were currently receiving training in at least one intervention (71% of respondents), and those who were not currently engaged in training, showed no difference in PSEa, t(432) = 1.01, p = 0.312, suggesting that the degree of satisfaction parents experience with therapy-related training, rather than simple participation in training, explains PSEa.

Table 4.

Linear regression analysis explaining autism-specific parenting self-efficacy (PSEa) from training satisfaction (TS).

	PSEa
	β	b	SE	t(304)	p	95% CI
Intercept		4.03	0.03	129.65	<0.001	[3.98, 4.10]
Training satisfaction	0.37	0.29	0.04	7.98	<0.001	[0.21, 0.37]

SE: standard error; CI: confidence interval.

To examine the combined contribution of parental involvement in therapy and satisfaction with training, we conducted an additional linear regression, which showed a significant main effect, such that parents who reported a greater sense of involvement and training satisfaction also reported higher levels of PSEa. Together involvement and training accounted for 18% of the variance in PSEa representing a moderate effect size (f² = 0.22; Table 5).

Table 5.

Linear regression analysis explaining autism-specific parenting self-efficacy (PSEa) from involvement in therapy and training satisfaction (TS).

	PSEa
	β	b	SE	t(304)	p	95% CI
Intercept		4.01	0.03	129.35	<0.001	[3.95, 4.07]
Involvement in therapy	0.22	0.14	0.04	3.98	<0.001	[0.07, 0.21]
Training satisfaction	0.30	0.23	0.04	5.46	<0.001	[0.15, 0.32]

SE: standard error; CI: confidence interval.

Child and family factors and PSEa

Caregiver burden

We used a regression analysis to examine the effect of self-reported caregiver burden (mean-centered) on parents’ confidence in their ability to manage the demands and challenges associated with raising a child with ASD. There was a significant main effect for burden such that parents who reported higher levels of social and financial burden reported lower levels of PSEa (Table 6). Burden accounted for 12% of the variance in this model representing a small to medium effect size (f² = 0.14). When intervention-related involvement, training satisfaction, and burden were entered together, each variable continued to contribute to the model independently, jointly accounting for 24% of the variance in PSEa, and representing a moderate to large effect size (f² = 0.32; Table 7). These findings suggest that parents’ sense of involvement in therapy and satisfaction with training is related to higher levels of PSEa, and that higher levels of self-reported social and financial burden independently explain lower levels of ASD-related parenting confidence.

Table 6.

Linear regression analysis explaining autism-specific parenting self-efficacy (PSEa) from caregiver burden.

	PSEa
	β	b	SE	t(433)	p	95% CI
Intercept		4.05	0.03	151.32	<0.001	[4.00, 4.11]
Burden	−0.34	−0.29	0.04	−7.59	<0.001	[−0.36, −0.21]

SE: standard error; CI: confidence interval.

Table 7.

Linear regression analysis explaining autism-specific parenting self-efficacy (PSEa) from involvement, training satisfaction, and burden.

	PSEa
	β	b	SE	t(304)	p	95% CI
Intercept		4.04	0.03	133.71	<0.001	[3.98, 4.10]
Involvement	0.22	0.14	0.03	4.13	<0.001	[0.07, 0.21]
Training satisfaction	0.26	0.20	0.04	4.89	<0.001	[0.12, 0.29]
Burden	−0.26	−0.23	0.04	−5.15	<0.001	[−0.32, −0.14]

SE: standard error; CI: confidence interval.

Severity of symptoms

We used a linear regression to test the hypothesis that parent-reported severity of ASD symptoms would explain PSEa. Results failed to confirm relationships between parent-reported symptom severity and PSEa (Table 8). A Pearson’s product-moment correlation confirmed that while the severity of symptoms was positively related to caregiver burden (r = 0.481, p < 0.01), PSEa (r = −0.074, p = 0.12) and child language level (r = −0.046, p = 0.34) were not.

Table 8.

Linear regression analysis explaining autism-specific parenting self-efficacy (PSEa) from symptom severity.

	PSEa
	β	b	SE	t(433)	p	95% CI
Intercept		4.06	0.03	142.63	<0.001	[4.00, 4.11]
Symptom severity	−0.08	−0.04	0.02	−1.63	0.103	[−0.08, 0.09]

SE: standard error; CI: confidence interval.

Caregiver burden as a moderating factor in PSEa

As a final step in the analysis, we examined the potential moderating effect of caregiver burden in the relationship between parental involvement, training satisfaction, and PSEa. We first used a linear regression to test the effect of caregiver burden in moderating the impact of parents’ sense of involvement in therapy on PSEa. Findings indicate that although burden is independently, and negatively, associated with PSEa, it does not undermine the impact of involvement on PSEa (Table 9).

Table 9.

Linear regression analysis explaining autism-specific parenting self-efficacy (PSEa) from involvement, caregiver burden, and burden × involvement.

	PSEa
	β	b	SE	t(411)	p	95% CI
Intercept		4.06	0.03	156.49	<0.001	[4.01, 4.11]
Involvement	0.34	0.20	0.03	7.80	<0.001	[0.15, 0.25]
Burden	−0.34	−0.29	0.04	−7.77	<0.001	[−0.36, −0.22]
Burden × involvement	0.04	0.03	0.03	0.95	0.340	[−0.03, 0.10]

SE: standard error; CI: confidence interval.

A final linear regression examined the potential impact of perceived caregiver burden in moderating the relationship between parents’ satisfaction with training and PSEa. Findings again indicate that caregiver burden does not moderate the effect of parents’ satisfaction with training in relation to PSEa (Table 10). Overall, these findings suggest that although caregiver burden has a direct negative impact on PSEa, caregivers’ ability to benefit from a sense of engagement in their child’s interventions, and from a productive intervention-related training experience, is not hampered by the degree of caregiver burden they experience.

Table 10.

Linear regression analysis explaining autism-specific parenting self-efficacy (PSEa) from training satisfaction, caregiver burden, and burden × satisfaction.

	PSEa
	β	b	SE	t(304)	p	95% CI
Intercept		4.06	0.03	131.56	<0.001	[3.10, 4.12]
Training satisfaction	0.34	0.27	0.04	6.25	<0.001	[0.18, 0.35]
Burden	−0.26	−0.23	0.05	−5.07	<0.001	[−0.32, −0.14]
Burden × training satisfaction	0.05	0.05	0.05	0.88	0.380	[−0.15, 0.06]

SE: standard error; CI: confidence interval.

Discussion

The aim of this study was to examine the effect of intervention-related variables and family factors on PSEa. Our findings support the hypotheses that a greater sense of involvement in intervention, and satisfaction with intervention-related training, are associated with higher levels of PSEa, while greater self-reported caregiver burden has a negative association with PSEa. These findings were not found to be dependent on the overall number of hours spent in intervention or training. Importantly, although symptom severity and child language level were found to be associated with parenting burden, they did not contribute to PSEa. Similarly, caregiver burden was not found to undermine the effect of involvement and/or training satisfaction on the development of PSEa.

Intervention factors and PSEa

The observed relationship between parents’ perceived experience of intervention and confidence in their ability to manage the challenges of raising a child with ASD is in keeping with previous studies that link the quality of intervention—including, for example, individualized training, parental support and involvement, and opportunities for mastery—as important in scaffolding parenting self-efficacy (e.g. Chong & Kua, 2017; Iadarola et al., 2018; Keen et al., 2010; Kuhn & Carter, 2006). Our findings are also in line with Hastings and Symes’ (2002) observation that quality, rather than quantity of contact, is critical in supporting parenting self-efficacy.

One proposed source of parental stress among this population is the management of complex and intensive intervention programs (Iadarola et al., 2018; Matson et al., 2009; Parker et al., 2020). As compared to individuals with other developmental disorders, individuals with ASD are high users of services and are often enrolled in three-to-seven different types of intervention simultaneously, requiring a commitment of many hours per week (Ruble & McGrew, 2007). These time demands lead to significant financial, emotional, and social stress, reflected in increased ratings of caregiver burden (Cappe et al., 2018; Chan et al., 2018; Landon et al., 2018; Ooi et al., 2016). Conversely, the extent of this involvement in intervention may also offer an opportunity for psychosocial support, and the kinds of mastery experiences that can build PSEa.

Kuhn and Carter (2006) characterize intervention as not only a space for child-centered skill development but also as an opportunity for parents to process the pressures and complex emotions associated with navigating their child’s diagnosis and care (see also Chong & Kua, 2017; Gentles et al., 2019, 2020; Karst & Van Hecke, 2012). From this perspective, a broader goal of intervention is to build parental resilience and resourcefulness as a means of supporting child and family well-being (Ylvén et al., 2006). It is important to note that parent experience assessed in this study reflects the cumulative impact of all interventions their child participated in at the time of survey completion. Given the established psychological impact among this population of managing multiple complex interventions (Iadarola et al., 2018; Matson et al., 2009; Parker et al., 2020), the collective impact of parent involvement across interventions may in fact differ from the impact of any individual intervention on overall parenting self-efficacy. Although studies of parenting self-efficacy in individual targeted interventions point to the opportunity to develop intervention-specific self-efficacy through well-constructed training experiences (e.g. Hastings & Brown, 2002; Sofronoff & Farbotko, 2002), the current findings point to the cumulative impact of an engaged therapeutic relationship as a significant factor in supporting parenting self-efficacy for caregivers of children with ASD.

These findings should also be considered in the context of how we have defined PSEa in this study. PSEa is conceptualized here as reflecting a more expansive view of raising a child with ASD, that includes not only parents’ confidence in their intervention-related competencies (e.g. “I feel confident that I can incorporate aspects of my child’s intervention(s) at home”) but also in broader autism-related parenting skills (e.g. “I feel that I can advocate for my child and my family in social spaces”) that relate to the broader social and emotional world of the child. Karst and Van Hecke (2012) note the need for an expanded approach to the evaluation of ASD interventions that includes psychosocial outcomes. In this context, our novel PSEa scale represents a more comprehensive assessment of ASD-related parenting competencies that may provide a useful tool in evaluating treatment outcomes related to parent and child well-being, and family functioning (Ardelt & Eccles, 2001; Estes et al., 2019).

Child and family factors and PSEa

Counter to our expectations, we did not find a relationship between either symptom severity or child language level and PSEa. This finding reflects existing inconsistencies in the literature regarding the impact of symptom severity on caregiver well-being (McStay et al., 2014; Prata et al., 2019; Salomone et al., 2018), but may also reflect the ability of parents to adapt to, and find meaning in responding to the challenges of raising a child with ASD (Myers et al., 2009; Pakenham et al., 2004; Pozo & Sarriá, 2015). Although these findings need further investigation, they offer some encouragement that intervention-related experiences—rather than the more immutable characteristics of the child’s autism profile—may bolster PSEa.

Our findings did confirm the hypothesis that higher levels of self-reported caregiver burden relate to reduced PSEa, although caregiver burden was not ultimately found to undermine the impact of involvement and training satisfaction in the development of parenting self-efficacy. The demonstrated relationship between burden and PSEa underscores the need for therapists to address parental stress and coping (Chong & Kua, 2017; Weiss et al., 2016) in the context of intervention. This is of particular importance, given the well-documented level of caregiver burden in this population (Hayes & Watson, 2013; Ooi et al., 2016; Padden & James, 2017), and the acknowledged value of parenting self-efficacy in supporting well-being and effective parenting (Albanese et al., 2019; Coleman & Karraker, 1998; Jones & Prinz, 2005). This recommendation is in line with the increasing call for interventions that create opportunities to reflect on the ongoing challenges faced by families of individuals with ASD, and that include psychosocial and/or cognitive-behavioral strategies to improve parent and child outcomes (Izzo et al., 2000; Karst & Van Hecke, 2012; Kuhn & Carter, 2006; Shochet et al., 2019).

Limitations

A number of limitations should be considered in interpreting this study’s findings, and framing future research questions. First, all data were based on parents’ reports of their children’s diagnoses, symptom severity, and language level, and they were not independently verified. Parental self-report is widely used in this population (Weiss et al., 2016) and parental rating of the severity of their child’s symptoms is a meaningful measure of subjective burden (Rezendes & Scarpa, 2011), particularly within the context of understanding the relationship between the parents’ experience of burden and self-efficacy. Nevertheless, more objective measures of language and behavior would be valuable in clarifying the impact of symptom severity and language level on PSEa. In addition, as with all survey data, there may also be reporting errors in parents’ estimates of, for example, hours per week dedicated to treatment and engagement in intervention-related training. Again, the aim of this study was to investigate parents’ perceptions of these factors and their relationship to self-efficacy; however, future studies would benefit from parallel caregiver and clinician evaluations and verified accounts of intervention modalities, hours, and training experience.

A second set of limitations relates to the makeup of the study sample. Although respondents represented a wide range of geographic locations, child age, child language level, and ASD symptom severity, the sample was predominantly college-educated (64%) and English-speaking. In addition, we did not specifically query race/ethnicity or socio-economic status and cannot assess the potential impact of these factors on PSEa. Findings should be interpreted with caution given the limits of these sample characteristics, particularly in terms of the generalizability.

Responses to the survey also came predominantly from mothers (93%). Previous research has found differences between mothers’ and fathers’ ratings of psychosocial distress related to caring for children with ASD (e.g. Hastings et al., 2005; Yamada et al., 2012) as well as the relationship between stress and parenting self-efficacy (Hastings & Brown, 2002; May et al., 2015; Sofronoff & Farbotko, 2002). Future studies could seek to recruit more fathers or male participants, to allow further investigation of the role of gender in PSEa.

Finally, given the lack of PSEa measures, and acknowledging the domain-specific nature of self-efficacy (Bandura, 1977), we opted to develop a new scale that would reflect the range of experiences and challenges that are particular to parents of children with ASD. We see this as a strength of this study and a contribution to the existing literature, but also note the need to further examine the psychometric properties of the PSEa scale. Our initial analysis of the scale showed good internal consistency (Cronbach’s alpha = .91); however, further testing across a range of populations would contribute to a better understanding of the reliability and validity of the scale.

Future directions

This study provides preliminary evidence of a positive relationship between PSEa and parent’s sense of involvement in their child’s interventions and training satisfaction across multiple interventions, but there is enormous opportunity to extend research on the development and impact of PSEa in this population. Future studies should seek to investigate the significance of race/ethnicity, socio-economic status, and family structure, including the role of fathers, in the relationship between parent participation in intervention and PSEa (see, for example, Ardelt & Eccles, 2001). In addition, given the very different developmental needs over the course of childhood and adolescence, more attention should be given to the examination of PSEa at different ages and at different moments in the trajectory of diagnosis and treatment (Estes et al., 2009; Sofronoff & Farbotko, 2002). Our findings on the association between PSEa, and parents’ experiences across therapies, also point to the value of further examination of sources of PSEa in the context of specific interventions, including in the context of interventions that have been established as evidenced-based. Given the apparent importance of training satisfaction and involvement across therapies, future studies should examine how these factors are explicitly supported within individual interventions. Finally, a next important step would be a more extensive psychometric analysis of the novel PSEa scale, introduced here, to determine reliability and validity of this instrument.

Conclusion

Parents of children with ASD face disproportionate levels of stress in their role as caregivers (Hayes & Watson, 2013; Parker et al., 2020) and are increasingly expected to serve as partners to therapeutic intervention providers (Gentles et al., 2020; Hastings & Symes, 2002; Schreibman et al., 2015). This study provides preliminary evidence of a positive relationship between perceived parental involvement in therapy, satisfaction with intervention-related training, and PSEa, independent of a child’s severity level or language ability. The study also finds that parents’ perception of overall burden is negatively associated with PSEa. Given the established benefits of parenting self-efficacy in terms of parent and child well-being, and the malleability of efficacy beliefs (Gist & Mitchell, 1992), these findings suggest a need for treatment design and interventions that center both on child skill development and on creating a therapeutic experience that fosters parental involvement and productive training experiences, and directly addresses caregiver burden. When considering intervention design and parent participation in this light, it becomes clear that authentic family-centered care for this population must involve an ongoing and open dialogue between parents and providers that further examines, and supports, the development of parenting self-efficacy.

Supplemental Material

sj-pdf-1-aut-10.1177_1362361321990931 – Supplemental material for Autism-specific parenting self-efficacy: An examination of the role of parent-reported intervention involvement, satisfaction with intervention-related training, and caregiver burden

Supplemental material, sj-pdf-1-aut-10.1177_1362361321990931 for Autism-specific parenting self-efficacy: An examination of the role of parent-reported intervention involvement, satisfaction with intervention-related training, and caregiver burden by Jennifer Kurzrok, Eileen McBride and Ruth B Grossman in Autism

Supplemental Material

sj-pdf-2-aut-10.1177_1362361321990931 – Supplemental material for Autism-specific parenting self-efficacy: An examination of the role of parent-reported intervention involvement, satisfaction with intervention-related training, and caregiver burden

Supplemental material, sj-pdf-2-aut-10.1177_1362361321990931 for Autism-specific parenting self-efficacy: An examination of the role of parent-reported intervention involvement, satisfaction with intervention-related training, and caregiver burden by Jennifer Kurzrok, Eileen McBride and Ruth B Grossman in Autism

Footnotes

Acknowledgements

The authors thank Lindsey A. Beck for her guidance in the data organization and analysis process. The authors also thank the parents who took time out of their busy schedules to participate in this study. This project would not exist without their contributions.

Declaration of conflicting interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This study was funded via student research funding awarded by the Emerson College Department of Communication Sciences and Disorders. J.K. was a student at the Emerson College at the time of study completion. E.M. and R.B.G. are employed by the Emerson College.

ORCID iD

Jennifer Kurzrok

Supplemental material

Supplemental material for this article is available online.

Notes

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