Participation in home and community contexts is essential for children's cognitive, social, and behavioral skill development, relationships, and health-related quality of life (1–4). Preschool-aged children with autism spectrum disorder (ASD) participate in fewer self-care, community mobility, leisure, social interaction, domestic chore, and education activities than their neurotypical peers (5). For these children, participation opportunities are restricted by sensory sensitivities and social, communication, and behavioral difficulties, which are often elicited or exacerbated by task demands and triggers due to a mismatch between the child and their environment (5–7).

Parents of young children, especially those with ASD and other neurodevelopmental conditions, use a variety of strategies to enable their child's successful participation in home- and community-based activities (8, 9). Strategies include strict adherence to set routines, constant supervision, use of repeated verbal and physical prompts to support task completion, reward or punishment systems, modifying the environment to limit exposure to aversive stimuli, removing children from challenging situations, and comforting children when they become distressed (9). These strategies are designed to improve child-environment fit. However, children's behavior challenges may continue despite parents' use of multiple caregiving strategies. Persistent behavioral challenges may erode parents' confidence and thwart future attempts to facilitate participation, further limiting children's opportunities for social learning as well as child and family quality of life (10).

Parents of children with ASD describe having to “pick their battles” when considering how to balance children's participation with their capacity to manage problem behaviors (10). They may abandon or delay task demands or participation attempts if problem behaviors outweigh their energy and ability to manage them (10). Pfeiffer et al. observed a decision-making process wherein parents of children with ASD considered the amount of effort needed to support their child's participation in relation to the meaningfulness of the activity (11). Parents restricted children's participation in non-essential or non-meaningful activities when they deemed it to be too “effortful” (11). Although parent effort significantly influences the quality of family life and opportunities for children to engage in activities that are essential for their development, the concept is under-represented in existing measurement tools. A measure of parent effort could be used to identify caregivers who are either expending very high (unsustainable) levels of effort or avoiding activities with excessive effort demands. Providers could use the measure to target skill-building interventions or environmental modifications that improve environmental fit and reduce parent effort demands, ultimately enhancing children's participation opportunities.

The Parent Effort Scale (PES) measures the amount of parent effort required to enable children's participation in common developmentally appropriate home- and community-based activities. Instrument content was informed by 34 parent/caregiver interviews regarding caregiver strategies for enhancing children's participation at home and in the community (11). All participants were full time caregivers of children ages 3–7 years with ASD. Initial versions of the PES items were generated based on interview results and thereafter, items were refined based on cognitive interviews conducted with parents of children with ASD (12). Here, we describe further refinement and validation of the PES through psychometric evaluation.

All study procedures were approved by the Institutional Review Board at Temple University.

Overall, the sample included a higher proportion of wealthier families than exist in the general US population. The majority of families (73%) had annual incomes >$60,000 and 59% earned more than $80,000 annually. Families of children with ASD and those with neurotypical children did not differ on any socio-demographic characteristic, except child gender (ASD: 76% boys, NT: 53% boys). Additional sociodemographic information is shown in Table 1.

PES item descriptive statistics are shown in Table 2. Compared to parents of neurotypical children, parents of children with ASD reported significantly higher effort levels on all PES items. For the ASD subgroup, the most effortful activities included dental appointments, attending religious services, and going to the movies or theater. Parents of neurotypical children rated hair washing and bathing as the most effortful activities. For both subgroups, playing with toys or objects was the least effortful activity for parents.

In an initial version of the two-level CFA model, 4 of the 34 items had low factor loadings (<0.70). These items assessed the parental effort required for hair care, nail care, swimming, and going to an amusement park. These items were removed. We addressed local dependency for a single item pair (child party, parent party) by removing the later item. The two-level CFA model was an excellent fit for the remaining 29 items (CFI = 0.97, TLI = 0.96, RMSEA = 0.08). Items that contributed to each subscale were internally consistent. Cronbach's alpha statistics for the subscales ranged from 0.81 to 0.95 (Table 3). Test-retest reliability was moderate or good for all PES items (ICCs: 0.51–0.82) and scales (ICCs: 0.61–0.86) (22).

Discrimination and threshold parameters from the graded response models are shown in Table 4. In the current sample, each PES item discriminated among the varying levels of effort needed to support children's activity participation (M = 2.66, SD = 0.73, range = 1.50–3.96). For all items, category thresholds were ordered as expected. The probability of endorsing higher response categories increased as the level of parental effort increased. Item-person maps for each PES scale show that in the current sample, items assessed a wide range of parental effort levels, but the items provided more information about children for whom participation requires moderate to high levels of parental effort (Figures 1–6).

Parents of children with ASD had significantly higher PES subscale and total scale scores than parents of neurotypical children (Table 3; Figure 7). ASD symptom severity, as measured by the GARS Autism Index, was positively associated with all PES subscale scores (range: 0.27−0.49) and PES Total (0.60) (Table 5). PES subscale scores are moderately correlated with the CSQ Total: Global Strain score (range: 0.49–0.69; Table 5).

The purpose of this study was to refine and evaluate the psychometric properties of the PES, a caregiver-report measure of the parent effort needed to enable children's participation in home- and community-based activities. Similar to the International Classification of Functioning, Disability and Health (ICF) construct of participation, the PES defines participation as involvement in a life situation (23). At this level, the child is involved in the activity; however, the PES measures the environmental factor of parental effort required to support participation in that activity rather than the capacity of the child to complete the task (23). The PES measures parental effort in six domains: (1) dressing, (2) hygiene/self-care, (3) sleep, (4) social activities in the home, (5) social activities in the community, and (6) healthcare. Subscale scores are combined to generate a total score. CFA modeling provided support for the tool's structural validity after four items were removed. These included two personal hygiene items: “hair care” and “nail care.” Two additional items, “swimming” and “going to an amusement park” were removed because they failed to contribute to the measurement of social events in the community, perhaps because they are seasonal in nature. Another item, “family parties at another's home” was removed because it provided nearly identical information as “parties for another child in the community/at another's home” in this sample. The final PES scales were found to have adequate internal consistency and test-retest reliability. The final PES subscales and total score are reliable and precise.

As expected, parents of children with ASD reported expending significantly more effort than parents of neurotypical children and ASD symptom severity was positively associated with effort levels. For children with ASD, language delays (24), sensory sensitivities (25), sleep differences (26), and behavioral rigidity and maladaptive behaviors (27) may increase parent effort demands. When parents of children with ASD perceive that they are unable to manage these challenging behaviors, they may experience internalized stigma and further restrict their child's participation opportunities for fear of others' judgement (28). For parents of children with ASD, effort demands are greater for community-based activities than for activities done at home (e.g., dressing, hygiene, sleep, and home-based social activities). Due to this, parents must often weigh the cost-benefit of their child's participation in home and community activities (29). Family with children with ASD may participate in fewer activities outside the home because the gap in child-environment fit is greater. Community contexts are less predictable and environmental modifications to support children's participation are more challenging to implement (10).

Parent effort and caregiver strain were found to be moderately correlated, indicating that they are related, but distinct constructs. Whereas parental effort describes the amount of perceived work required to complete caregiving tasks, strain describes a perceived burden of more responsibilities and demands that result in negative psychological consequences (14). Parents who expend high levels of effort across multiple activity domains for prolonged periods of time will likely experience strain (30). In contrast, parents who expend moderate (and gradually less) effort to facilitate their child's participation in a one or a small number of domains may view the effort as rewarding and a source of pride (31).

By gauging the level of parent effort within and across activity domains and over time, the PES can be used to target and evaluate the effectiveness of interventions that aim to help parents enhance their child's participation and thereby, support children's cognitive and social development. PES subscales can be used to create a “parent effort profile” that distinguishes activity domains that require minimal parent effort (strengths) from those that demand significant effort (challenges). Providers could work with families to identify child or parent skills (or skill deficits) and environmental conditions that reduce parent effort requirements for some domains and increase effort demand for others. In this way, PES results can inform the design of interventions that ease parental effort and thus, increase opportunities for children to participate. When administered repeatedly, the PES could be used to gauge the effectiveness of these interventions.

Limitations of this study include participant homogeneity and sampling bias. The sample over represents wealthier, Caucasian, and suburban families whose participation opportunities and preferences may differ from those of less well-resourced, urban, or rural families and those with different cultural backgrounds. For example, families in this study may have more opportunities to participate in costly community leisure activities and less need for public transportation. The PES should be further validated in larger and more diverse samples, including parents of children with other neurodevelopmental and chronic health conditions that influence parenting effort and children's participation.

The raw data supporting the conclusions of this article will be made available by the authors, without undue reservation.

The studies involving human participants were reviewed and approved by Temple University IRB. The patients/participants provided their written informed consent to participate in this study.

All authors contributed to the conception and design, acquisition of data, or analysis and interpretation of data. They all drafted and revised the manuscript's important intellectual content.

KB is employed at Janssen Pharmaceuticals Inc., and AP owns and is employed by Piller Child Development, LLC. The remaining authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.

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