The general parenting literature suggests that parental expectations are important predictors of parent behaviors and child outcomes. However, for children with developmental disabilities, little is known about the scope, nature, and impact of parental expectations. Guided by Bronfenbrenner’s bioecological theory, this scoping review examined the state of the research literature on parental expectations for children with developmental disabilities, including autism spectrum disorders, intellectual disabilities, down syndrome, cerebral palsy, and attention-deficit/hyperactivity disorder. Using PRISMA approaches, we search five databases—APA PsycInfo®, PubMed®, Academic Search Complete, EBSCOhost, and Education Resources Information Center (ERIC)—and the reference lists of relevant studies. We identified a total of 58 studies that met our inclusion criteria. Results indicate that most studies were cross-sectional, were conducted in the United States, and addressed parental expectations for children with autism spectrum disorders. In general, parents expressed varied expectations for their children with developmental disabilities. In contrast to the general parenting literature, parents of children with developmental disabilities expressed specific, nuanced, expectations for domains beyond academic achievement, including employment, relational, and functional outcomes. Despite the limited number of studies from non-western contexts, regional differences were evident. Further, findings suggest that various child, parent, and societal factors influence parental expectations. In turn, parental expectations may impact both parent and child outcomes. The review highlights significant gaps in the literature and key areas for future research.
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Over 1 billion people, more than 15% of the world’s population, live with a form of disability (World Health Organization, 2011), and an estimated 52.9 million children under the age of five live with a form of developmental disability (Olusanya et al., 2018). Further, worldwide prevalence rates of developmental disabilities show a persistent increase (Zablotsky et al., 2017), and reports from the United States suggest that over 15% of children between the ages of 3 and 17 years have been diagnosed with one or more developmental disabilities. Unfortunately, reports also show that without adequate intervention, children with developmental disabilities are less likely than their typically developing peers to be successful as adults (World Health Organization, 2011). As such, supporting the life success and meaningful integration of people with developmental disabilities into society is a global challenge that requires a comprehensive and cross-national effort.
Families, particularly caregivers, are a critical resource and point of intervention inherent and relevant to all nations. Evidence from the general parenting literature indicates that the level of involvement in children’s academic and social lives has a substantial impact on their development and associated life outcomes (Hill & Tyson, 2009; Jeynes, 2012; Wilder, 2014). However, few studies probe positive parenting factors in people with developmental disabilities. One particularly understudied positive parenting factor is parental expectations. Parental expectations –the desires parents have for their children– directly and indirectly, impact child outcomes (Hill & Tyson, 2009). Moreover, these expectations guide parents’ behaviors, including the opportunities they provide their children and their level of involvement in different child-related activities (Simpkins et al., 2012). For example, evidence from the general parenting literature, which focuses almost exclusively on parental educational expectations, suggests that parents with high expectations are more likely to allow their children to participate in formal and informal activities that facilitate educational attainment in their children (Froiland et al., 2013; Simpkins et al., 2012). In studies sampling parents of children with developmental disabilities, some have examined more varied aspects of parental expectations, but findings from this body of work have not been collated to address questions about the nature of these expectations and their impact on child and parent outcomes. Therefore, this systematic scoping review seeks to provide a comprehensive overview of studies examining parental expectations for children with developmental disabilities.
Theoretical Framework
This review draws heavily on principles described in Bronfenbrenner’s bioecological model (Bronfenbrenner & Morris, 2006). In this model, a child’s development is shaped by proximal processes or iterative interactions between the child and their socializing agents—including parents and other caregivers. These proximal processes emerge in a larger ecological context, including overarching ideologies that serve as the blueprints for life and influence development by shaping cultural norms of acceptable and unacceptable behavior and practices (Bronfenbrenner & Morris, 2006). The influence of the ecological context is captured in the cultural beliefs, norms, and laws of a society, including messages about disability that are broadly communicated through overt and covert channels (Sontag, 1996). As such, the cultural milieu in a society is central to parents’ socialization practices, including their expectations for their children. Cultural norms can influence what parents desire, expect, or even perceive as normal (Super & Harkness, 1986). However, it is important to note that in Bronfenbrenner’s model, influence is bidirectional such that child characteristics can also influence parents’ expectations of their children.
Child-level factors such as age, disability type, gender, or degree of impairment can potentially impact parents’ perceptions of their children’s abilities, their expectations for their children, and their behaviors toward them. In this way, parents’ impressions of their children may lay the foundation for whether their children meet or surpass their expectations (Eccles, 2005). Further, transitions associated with growth and maturation can be especially challenging for children with developmental disabilities, and parental expectations may play an important role in how well transitions are navigated.
Understanding the nature of parental expectations, factors influencing these expectations and their impact is critical to advancing the scientific field of developmental disabilities. Research in this area may also yield important implications for policy and intervention efforts to improve the quality of life of children with developmental disabilities and their families. While there is growing interest in and recognition of the importance of understanding the role of parental expectations in disability populations (Chiang et al., 2012), no studies to date have provided a cohesive picture of the state of the literature in samples with diverse developmental disabilities.
Purpose of the Current Scoping Review
This manuscript aims to report findings from a project aimed at mapping the current state of the literature on parental expectations for their children with developmental disabilities. Scoping reviews are ideal for research inquiries seeking to assess the state of literature in areas that are yet to be comprehensively reviewed or are complex and, therefore, ill-suited for systematic reviews (Peeters et al., 2009).
The goal of this study was to first assess the state of the literature on parental expectations for children with developmental disabilities, including the scope of studies, regional representation, study design, disability type, and other participant demographics. The second part of the review considers how the literature answered key developmental questions regarding the nature and impact of parental expectations for children with developmental disabilities. We operationally defined parental expectations as the expectations or aspirations parents or primary caregivers report having for their children’s academic, social, functional, and vocational outcomes. Additionally, we restricted developmental disabilities, which are typically present at birth and characterized by impairments in physical, language learning, behavior, and self-care (Boyle et al., 2011), to studies addressing the five most prevalent developmental disabilities: autism spectrum disorders (ASD), intellectual disabilities (ID), Down syndrome (DS), cerebral palsy (CP), and attention-deficit/hyperactivity disorder (ADHD) (Zablotsky et al., 2017).
Method
We adopted Arksey & O’Malley’s (2005) methodology, which outlines five specific stages of conducting a review: (1) identifying research questions, (2) identifying relevant studies, (3) selecting studies, (4) charting the data, and (5) summarizing and reporting results. In the paragraph above, we outline our research questions.
Stage 1: Identifying Research Questions
Three primary research questions guided this review:
1.
What are parents’ expectations across multiple domains (i.e., academic, social, functional, and vocational) for their children with developmental disabilities?
2.
What child, parent, and cultural factors predict parental expectations?
3.
What outcomes are associated with parents’ expectations?
Stage 2: Identifying Relevant Studies
We searched five databases: APA PsycINFO®, PubMed®, Academic Search Complete, EBSCOhost, and Education Resources Information Center (ERIC). In each database, the following combination of keywords was searched: “parental expectations” OR “parental aspirations” OR “expectations” OR “aspirations”; AND “academic” OR “social” OR “employment” OR “functional” OR “independent living” OR “outcomes”; AND “cerebral palsy” OR “intellectual disability” OR “autism” OR” autism spectrum disorders” OR “attention-deficit/hyperactivity disorder” OR “down syndrome”. In addition, we examined the reference lists of each selected study for additional relevant studies we might have missed in the initial search.
We included empirical studies published in English between January 1990 and May 2020. To be included, the studies also needed to assess parent’s academic, social, functional, or vocational expectations or aspirations for their children with ASD, ADHD, cerebral palsy, intellectual disabilities, or Down syndrome as the primary sample or main comparison group. We excluded studies sampling parents of children with unspecified disabilities or disabilities beyond the scope of this paper; studies that combined responses from parents of children with different developmental disabilities in a single group; studies assessing parental expectations for treatment/diagnosis, physical development, interventions, or programs; studies of parents with disabilities; studies assessing expectations from the child’s perspective; and studies assessing the expectations of non-parent samples (e.g., teachers and physicians). Lastly, we also excluded conceptual papers, reports, and review papers. The search for relevant studies was completed in July 2020.
Stage 3: Selecting Studies
Using the Preferred Reporting of Items for Systematic Reviews and Meta-analyses (PRISMA) procedures, we identified 1823 studies from the five databases and an additional 13 studies through hand-searching strategies. After removing duplicates, 1542 studies remained. These studies were imported into Abstrackr (Wallace et al., 2012) and subjected to a double screening process based on the outlined inclusion and exclusion criteria. Each study was assigned one of three possible labels: “yes”; “maybe”; or “no” by two coders. The “yes” pile contained only studies that both coders agreed were a good fit, the “maybe” pile included studies where at least one coder perceived a fit, and the “no” pile contained all studies that both coders deemed poor fits based on our inclusion criteria. At the end of this process, there were 46, 74, and 1422, studies in the “yes”, “maybe” and “no” piles, respectively. Interrater reliability between the coders was 95.33% (i.e., as indicated by the pile that each record was assigned). All “yes” studies were automatically assigned for a full review. Studies assigned to the “no” pile were excluded from further analysis, and “maybe” studies were first discussed to assess their eligibility for a full review via consensus. Through this process 1, 422 “no” studies and 28 “maybe” studies were excluded, whereas 92 studies were assigned for a full review. Thirty-four studies were excluded after a full review for reasons specified in the PRISMA flow chart (Moher et al., 2009) (see Fig. 1), resulting in 58 included studies.
Fig. 1
PRISMA Flow Chart of Selected Studies
×
Stage 4: Charting and Synthesizing Data
Two co-authors (MWN and ZS) developed the data charting form specifying variables and study characteristics to extract from each article where available. Subsequently, MWN partnered with the third co-author (CO) to chart the data from all included studies independently. The two reviewers met regularly to discuss the results and update the data charting form. We abstracted the following data from each study: the title of the study, the disability group, the dependent and independent variables examined, the study’s main aim(s), the type of study, sample characteristics, source of study data (i.e., country), the conceptual model used in the study, the parental expectation measure used, the specific domains of parental expectation examined, the type of data collected (primary or secondary), and the main findings of the study. We present the data on disability category, sample characteristics, study data source, study design, type of data, and the parental expectation measure used in Table 1. The complete table is included as supplementary data. We did not appraise the quality of included studies in this review.
Parent ratings of importance and likelihood of outcomes
To answer our query about the scope of studies investigating parental expectations, we synthesized the data about each included study’s data source (i.e., country), study type (i.e., longitudinal, or cross-sectional), data type (i.e., primary or secondary), focal disability type, and child sample characteristics. We focused on synthesizing child sample characteristics instead of parent sample characteristics to better understand the children represented and determine whether the answers to our research questions would be more applicable to children at a specific developmental stage. We synthesized data on each study’s main aims and findings to answer our research questions. First, the authors classified all studies into three groups: studies describing parental expectations, studies examining predictors of parental expectations, and studies investigating the influence of parental expectations on parent and child outcomes. Next, the first author, primarily responsible for the data synthesis process, coded and synthesized the findings, but all co-authors reviewed the results and subsequent conclusions. The author synthesized the data by coding information documented during the charting process and by examining patterns in the results that answered the research questions directly or provided helpful contextual information to explain the results. For instance, the author coded information about the specific expectation domains explored in each study and the definitions of these domains. Within each disability category, she used the bioecological model as a framework to code information about the different types of predictors influencing different domains of parental expectations and whether findings were consistent within and across disability categories. The framework was also used to code and synthesize the outcomes associated with different types of expectations and variables predicting these outcomes within and across disability categories.
Stage 5: Summarizing and Reporting Results
The scope of studies examining parental expectations
Studies were unevenly distributed across the five developmental disabilities assessed. Thirty-two studies (55%) sampled parents of children with ASD, whereas 11 (19%), four (7%), and three each (10%) sampled parents of children with intellectual disabilities, Down syndrome, cerebral palsy, and ADHD, respectively. In addition, five other studies (9%) sampled parents of children with different combinations of the five targeted developmental disability categories but presented separate results for each disability category (see. Figure 2).
Fig. 2
Developmental Disability Focus
×
In total, 36 studies combined two or more expectation domains as a single outcome of current or future expectations. We refer to these as general parental expectations. Eight studies explored parental educational expectations, five examined social expectations, and seven each investigated functional and vocational expectations. In the studies sampling parents of children with ASD, 23 assessed varied general expectations, whereas four, three each, and two assessed educational, vocational, different types of social, and different functional expectations, respectively. Of the 11 studies that sampled parents of children with intellectual disabilities, four assessed functional expectations, three each assessed varied general and vocational expectations, and two each assessed educational and social expectations. Half of the studies sampling parents of children with Down syndrome analyzed general expectations and the remainder functional or educational expectations. Two of the three studies sampling parents of children with cerebral palsy investigated general future expectations, but the last studied educational expectations, specifically literacy skills. All the studies involving parents of children with ADHD researched parents’ general expectations. Lastly, in the studies that reported findings of parents of children with different developmental disabilities separately within the same study, two probed vocational expectations, and three explored general expectations. This information is presented in Table 2. We describe each of these expectation domains under the sub-heading “The definitions and nature of parental expectations.”
Table 2
Frequency Data on Parental Expectation Domains Assessed in Included Studies by Disability Category
ADHD
ASD
CP
DS
ID
MD
Functional Expectations
0
2
0
1
4
4
Educational Expectations
0
4
1
1
2
2
Employment Expectations
0
3
0
0
4
4
Social Expectations
0
3
0
0
2
3
General (combined) Expectations
3
23
2
2
3
2
The 58 studies that met our inclusion criteria sampled participants from the United States (66%), Canada (7%), Australia (7%), Kenya (5%), Singapore (4%), and a few other countries (11%). However, a closer examination of these countries with respect to global economic rankings revealed that over 90% of included studies obtained their samples from high-income countries. Except for one study, all studies sampling parents of children with ASD (97%) and all studies involving parents of children with ADHD, cerebral palsy, and Down syndrome used data from high-income, western, industrialized countries. Studies with parents of children with intellectual disabilities had more representation from middle and lower-income countries, but most of these studies (64%) also obtained their participants from better-resourced contexts.
Nearly 95% of included studies used cross-sectional designs, and most studies used primary data (84%). Yet, of the studies employing secondary data, there was a heavy reliance on data from the National Longitudinal Transition Study 2 (NLTS-2) (Newman et al., 2011). Specifically, apart from one ASD study that used secondary data from the TEACCH study (Schroeder, 2016), all other secondary data studies were based on the NLTS-2 data. Within disability categories, 28 (88%) ASD studies used primary, and four used secondary data. Nine (82%) intellectual disability and two (50%) multiple disabilities studies used primary data. All studies with parents of children with Down syndrome, cerebral palsy, and ADHD used primary data.
The age range of children represented by their parents varied widely across studies. While some studies restricted their parent sample to capture the perspectives of parents of children in a specific developmental stage (e.g., 6–12 years = 3 studies), most combined perspectives from parents of children at varying developmental stages and ages. Across disability categories, the most frequently sampled group (n = 9 studies) were parents of adolescents (i.e., 12–18 years old), and the least sampled group were parents of adult children (n = 1). Among ASD studies, ten focused on one developmental stage, eight included parents of children from two developmental stages, eight combined the perspectives of parents of children across three developmental stages, two combined four and five developmental stages each, and two did not provide any child-age data. Two intellectual disability studies focused on a single developmental stage, three combined two developmental stages, two combined three developmental stages, and four did not report any child age data. In the three studies that sampled parents of children with Down syndrome, one targeted a single developmental stage, another combined perspectives across two developmental stages, and the last combined perspectives across three developmental stages. In cerebral palsy- and ADHD-specific studies, the patterns were similar. In each group, one targeted a single developmental stage, whereas two combined perspectives across two developmental stages. Lastly, in the studies assessing multiple disabilities separately, two targeted one developmental stage, and three studies combined two developmental stages.
Beyond seeking to assess the scope of studies investigating parental expectations, we were guided by three questions probing the nature of these expectations, the factors predicting these expectations, and the outcomes associated with these expectations. Twenty of the included 58 studies described parental expectations and 23 each examined predictors and outcomes associated with parental expectations. Some studies addressed more than one research question.
The definitions and nature of parental expectations
Most studies describing parental expectations sampled children with ASD. Our probe into expectations for children’s academic, social, functional, and vocational outcomes revealed varied operational definitions of these constructs. Whereas some sought to investigate these constructs broadly, others were more specific and narrow in their investigations. For instance, in researching parental educational expectations, Bush et al., (2017) assessed parents' thoughts of their children's performance in the current school year, whereas Peeters et al. (2009) investigated parents’ literacy expectations for their children. Functional expectations spanned cognitive domains such as memory skills (Arabsolghar & Elkins, 2000), puzzle completion (Ly, 2008), and practical skills like independence and homeownership (Ivey, 2004). Vocational expectations probed parents’ views on the value and likelihood of children holding current and future jobs (e.g., Ivey, 2004) and the type of job (e.g., competitive employment, sheltered employment, and supported employment) (Blacher et al., 2010). Social expectation studies queried romantic experiences, community involvement and responsibility, and general participation in citizenship activities (e.g., Ivey, 2004). Domain-specific definitions also varied widely within disability categories. To illustrate, three ASD studies assessed social expectations but specifically examined parents’ romantic expectations (Holmes et al., 2016), children’s play expectations (Mitchell & Lashewicz, 2018), and social responsibility and citizenship activities (Ivey, 2004).
A few studies (e.g., Bush et al., 2017) examined a single type of parental expectation, but most investigated different domains of parental expectations simultaneously (Ivey, 2004). However, it is worth noting that the breadth of these domains is still up for debate, given the inconsistencies in operational definitions highlighted earlier. For instance, although some studies explore different social experiences, these may all be captured under a single factor. The phenomenon is further illustrated in a parental expectations scale development project that hoped to identify a seven-factor structure but instead arrived at a three-factor solution consisting of functional attainment expectations, social engagement expectations, and quality of life expectations (Dalrymple, 2018). This issue is further compounded by the fact that studies assessing general expectations often combine different domains of expectations. For instance, although all ADHD studies in this review assessed general expectations, one of these (i.e., Brien, 2001) combined expectations for academic achievement, participation in extra-curricular and household activities, and general success to create the construct. The second’s (Musabelliu et al., 2018) construct comprised academic achievement, independent living, and social relationships, and in the third (Bull & Whelan, 2006), parents expressed a desire for their children to grow into ideal adults who were considerate, independent, and responsible. This pattern persisted irrespective of the type of disability category under consideration. Therefore, in general, and even within the specified disability categories under review, there was little to no consensus on specific domains’ definitions or the general expectation construct.
Studies employed varied qualitative and quantitative methods in investigating these parental expectations. Interview-based qualitative papers were, among other factors, guided by the parental expectation of interest and observations of the target sample (e.g., Bilgin & Kucuk, 2010). We identified more than 25 unique quantitative measures. As stated above, most secondary investigations were based on questions from the NLTS-2, but of the studies using primary data, the 20-item parental expectations measure (Ivey, 2004) or adapted versions of this scale (e.g., James, 2019) was the most popular tool. It assesses parents’ expectations across multiple domains on two criteria: the importance of the expectation and its likelihood of occurring. Other measures used were the Parental Expectancies Scale (e.g., Brien, 2001), the Hopes for the Future Questionnaire (Arellano et al., 2019), Vicarious Futurity Scale (Faso et al., 2013), and the Parental Literacy Expectations Questionnaire (Peeters et al., 2009). Some, like the Ivey (2004) measure, researched multiple domains, while others assessed a single domain.
The diversity of measures used in the included studies helped to shed light on the nature and value of these expectations. Across the disability categories, the expectations of parents of children with disabilities were often lower than parents of typically developing children (Brien, 2001; Magill-Evans et al., 2001; Musabelliu et al., 2018; Peeters et al., 2009; Phillips, 2014). Within their respective disability categories, expectations were also lower for children with comorbidities, complex needs, or lower functional skills (Barak et al., 2017; Kang, 2015; Magill-Evans et al., 2001; Poon et al., 2013). Even when parents expressed more optimistic domain-specific expectations, they were frequently tempered with a preference for more sheltered accommodations or options (e.g., Poon, 2013). However, in the ASD-specific studies, there were fewer caveats to parents’ optimistic expectations for their children. There is also some descriptive evidence suggesting that parents of children with higher support needs have lower expectations for their children. Further, cultural influences may shape parents’ expectations for their children irrespective of their disability.
Specifically, parents of children with ASD expected their children to attend school, be financially independent, be employed, and have rich social lives and relationships (Bush et al., 2017; Kang, 2015). Interestingly, these expectations appeared to differ based on the cultural norms of the sample. To illustrate, in two separate studies that used similar versions of the same instrument, parents in the United States were more likely to endorse attending school as the most important expectation and envisage the highest education possible for their children (Ivey, 2004). On the other hand, Asian parents in Singapore were less likely to expect post-secondary education for their children or perceive education to be the most important outcome for their children (Poon, 2013). Expectations for community participation, social inclusion, and independent living are also modest and sometimes non-existent in ASD samples outside the United States (Heiman, 2002; Poon et al., 2013). However, US-based studies routinely report expectations of residential independence (Kirby, 2016; Sosnowy et al., 2018) and full community participation (Blacher et al., 2010).
Most parents of children with intellectual disabilities expected them to continue living with either family members or external care providers in their adult years. However, a significant proportion of parents, between 20–36% (depending on the study), expected their children to live independently or in a restricted community when older. Functional expectations about memory-related functions were generally low, irrespective of the child’s ability (Arabsolghar & Elkins, 2000), but many parents expressed a desire for their children’s future employment, particularly in sheltered workshops, and community settings (Gilson et al., 2018; Papay & Bambara, 2014; Poon, 2013). Post-secondary educational expectations were generally low in this group. For instance, Dell & Tasse (2019) noted that 84% of parents in their study did not expect their children to attend college. Some reports also showed that parents were more likely to be optimistic about their expectations if their children had fewer support needs or less severe cognitive impairments (Mutua & Dimitrov, 2001). In a Kenyan-based study that alluded to prevailing cultural norms, there was a significant gender-by-symptom severity interaction favoring boys, where parents of boys with mild to moderate intellectual impairments were more hopeful that their children would assume adult responsibilities or attain a higher level of education than parents of girls with similar impairment levels (Mutua & Dimitrov, 2001).
Findings from parents of children with Down syndrome also showed they had lower expectations than parents of typically developing children. Two qualitative studies showed that parents had high general and educational expectations for their children (Davies & Morgan, 2010; Phillips, 2014), but these high expectations emerged as themes and were not actively or objectively studied. On functional expectations, a cross-cultural study found that despite acknowledging similar levels of functioning in their children, Asian American parents perceived their children as less successful, had lower future expectations for them, and expected more effort from them compared with European American parents (Ly, 2008).
Similarly, parents with children diagnosed with cerebral palsy revealed lower expectations compared to parents of typically developing children. Few knew what to expect in literacy skills (Magill-Evans et al., 2001), and within-study probes evidenced higher expectations for those with better functional skills (e.g., Peeters et al., 2009).
The narrative was upheld in ADHD studies, with lower reported expectations for diagnosed children than typically developing children. Yet, they desired that their children grow into responsible, independent adults, although these aspirations were lower for those with comorbidities (Bull & Whelan, 2006).
Predictors associated with parental expectations
Twenty-three studies examined predictors of parental expectations, and much like the studies describing the construct, most sampled parents of children with ASD. Informed by the bioecological framework, we identified investigations into the impact of several micro-system level factors and a few probes into meso-system and macro-system level factors. The microsystem-level factors were further categorized into child, parent/family, and school-level factors. Child-level factors evidenced some consistent findings, but the impact of parent/family and school-level factors were largely inconsistent, and the limited data on meso-system and macrosystem influences precluded conclusive statements.
Child-specific factors investigated at the microsystem level included symptom severity, level of functioning, age, participation in challenging behaviors, gender, intellectual ability, language skills, and the nature of ASD onset (i.e., congenital or later in life). Across all disability categories, the key child-level factors were symptom severity, and functional or cognitive ability, with evidence suggesting both may be significantly associated with general and domain-specific expectations (Barak et al., 2017; Bush et al., 2017; Dalrymple, 2018; Holmes et al., 2018; Sosnowy et al., 2018; Thomas et al., 2018).
In the ASD-specific studies, more predictors have been examined, including ASD onset type (i.e., either congenital or later onset), child language skills, and child age. ASD onset type was not associated with parental expectations in two studies (Scher, 2009; Shoop, 2016). Similarly, the single exploration into language skills did not yield significant associations with educational expectations (Bush et al., 2017). The child’s age, on the other hand, was inconsistently associated with outcomes, as Bush et al. (2017) found that educational expectations were significantly lower for older children with ASD, but (Holmes et al., 2016, 2018) did not identify any significant associations between child age and educational, future independence, financial, or romantic social expectations.
No specific parent or family microsystem-level demographic factor was repeatedly examined across disability categories. Among families of children with ASD, findings were mixed. Multi-study inquiries into associations between parents’ general and educational expectations and maternal educational level (Arellano et al., 2019; Bush et al., 2017) and parents’ participation in expectation-enhancing intervention programs (Contreras, 2006; Hagner et al., 2012; James, 2019) produced inconsistent results. For example, in two distinct probes into uniquely defined general expectations, Contreras (2006) found that participating in an expectation-enhancing intervention increased parental expectations, but a different intervention by James’ (2019) yielded no significant effects on parents’ expectation levels. Likewise, single-study investigations into the influence of parents’ gender, income, and other family background variables were inconsistent (e.g., Holmes et al., 2016).
At the school level, the effect of the time spent in general education classrooms and the parent-teacher relationship may also be variable, with evidence of positive, negative, and non-significant findings among ASD and ID participants (Arellano et al., 2019; Bush et al., 2017; Kang, 2015; Martinez et al., 2012). Bush et al., (2017) also researched the impact of teachers’ years of experience and educational level, and parents’ school involvement on parents’ educational expectations, but they did not identify any significant associations.
In the only study exploring meso-system level influences in our eligible studies, Arabsolghar & Elkins, (2000) compared the perspectives of parents of children with ID’s functional skills to their teachers’ perspectives. Memory skills were operationalized as comprising memory strategies, memory knowledge, and memory behavior. Although memory knowledge expectations were slightly higher than memory strategies and behavior expectations, both parties held low expectations for the children across all memory domains, and there were no significant differences between them on any memory criteria.
Investigations into macro-system level influences were rare and primarily consisted of cross-cultural comparisons. For example, Ly’s (2008) comparison of Asian and American parents of children with Down syndrome on their competency in puzzle completion, described above, showed that although both held similar perceptions, Asian parents desired more effort from their children.
In summary, while the consistent findings linked to select child-level variables are promising, more studies are needed to confirm these findings, clarify the inconsistencies identified in other proximal factors, and shed light on the impact of other systemic influences on parents’ general and domain-specific expectations.
Outcomes associated with parental expectations
Twenty-three studies also examined outcomes associated with parental expectations, providing some preliminary evidence that parental expectations may influence both parent and child outcomes. A few sampled parents of children diagnosed with ASD, intellectual disabilities, and Down syndrome, but we did not find any targeting parents of children with CP or ADHD. All study outcomes were restricted to the microsystem level of Bronfenbrenner’s ecological model and specifically explored child, parent, or process-related outcomes and actions.
Evidence from the three disability categories with studies on outcomes associated with parental expectations is mixed. The impact of general expectations on child outcomes, such as post-secondary education and employment, was inconsistent, as were investigations into mechanisms associated with outcomes. In contrast, specific expectations may be more consistently associated with discrete, closely related outcomes (e.g., educational expectations on educational outcomes) and broader outcomes (e.g., educational expectations on social inclusion). Evidence on the impact on parent outcomes was restricted to ASD studies and is described below.
ASD studies probed the impact of general and domain-specific expectations on child and parent outcomes such as post-secondary education and employment, adaptive functioning, self-efficacy, life satisfaction, and stress. Whereas general and domain-specific expectations linked to post-secondary education, general independence, and employment were largely positively linked to outcomes, others like citizenship and financial independence expectations were not. Specifically, in the child outcome domain, general, employment, and post-secondary expectations were associated with post-secondary employment (Chiang et al., 2013; Kirby, 2016; Williams, 2017), whereas post-secondary expectations were associated with participating in post-secondary education (Chiang et al., 2012). On the other hand, Holmes et al. (2018) did not find significant associations between citizenship expectations and parents’ conversations with their children about civic responsibilities. Examining parent outcomes, Arellano et al. (2019) discovered that parents with more positive general expectations for their children reported higher perceptions of efficacy and life satisfaction as measured by the parental self-competence scale. Two studies also investigated whether general parental expectations predicted parenting stress but obtained different results: one found parental expectations to be predictive (Faso et al., 2013), but the other found no significant effects on parenting stress (Scher, 2009).
Further, some associations alluded to intermediate outcomes that may connect parents’ expectations to outcomes. For example, Chiang et al. (2012) discovered that parents with higher expectations for post-secondary education participation were also more likely to participate in school-based transition-planning activities for their children than parents with lower expectations. Similarly, Holmes et al. (2018) found that parents with higher independence expectations were more likely to assign household chores to their children than parents with lower expectations. These are suggestive of process-oriented activities that closely align with specific expectations. There is also preliminary evidence suggesting that parents’ expectations may mediate the relationship between child or family background variables and outcomes. This was evident in Kirby (2016), where general parental expectations mediated the relationship between family background variables and youth outcomes, and in Holmes et al. (2016), where parents’ romantic expectations significantly mediated the relationship between ASD severity and parents’ provision of sex and relationship education to their children with ASD with lower-than-average IQ.
Studies involving parents of children with ID primarily probed child outcomes (i.e., post-secondary education, employment, and social inclusion). General expectations in Dell’Armo & Tassé’s (2019) study, were not associated with post-secondary outcomes or employment participation. However, educational expectations were positively associated with educational enrollment (Mutua, 2001) and social inclusion (Paypay & Bambara, 2014), whereas employment expectations were associated with employment (Gilson et al., 2018) and post-secondary education (Papageorgiou & Kalyva, 2010). However, unlike the pattern witnessed in Kirby et al.’s (2016) ASD study, parental expectations did not significantly mediate the relationship between family background characteristics and child outcomes (Dell’Armo & Tassé, 2019).
In the single study example involving parents of children with Down syndrome, Phillips (2014) noted that despite having lower expectations than parents of typically developing children, these parents did not engage in less optimal parenting practices like authoritarian parenting or coercion. Instead, all parents used positive parenting strategies like authoritative approaches.
These studies demonstrate that parental expectations may be linked to child outcomes, process outcomes linked to later child outcomes, and parent outcomes. Furthermore, expectations may mediate associations between parent and caregiver demographic characteristics and outcomes. However, it may be more meaningful to explore impacts within than across disability categories due to the divergent patterns noted. Moreover, as seen in the predictive explorations, the inconsistent results in some areas (e.g. the link between parental expectations and parental stress in ASD studies), the limited number of studies across disability categories, and the limited number of domain-specific expectation queries within disability categories limit conclusions on (1) parent and child outcomes associated with parental expectations, (2) the extent to which parental expectations may influence factors more proximal to outcomes, and (3) the degree to which expectations may mediate associations between demographic factors and outcomes across disability categories.
Discussion
This review paper sought to consolidate emerging evidence on parental expectations’ scope, nature, predictors, and impact on children with developmental disabilities and their parents. Specifically, we examined the characteristics of eligible studies to ascertain their scope and assessed study findings related to the descriptions of expectations, factors that predicted these expectations, and outcomes associated with them. Regarding study characteristics, our findings reveal that most studies were cross-sectional inquiries sampling parents of children diagnosed with ASD from high-income countries. Most studies used primary data and combined parent perspectives of children at different developmental stages. Descriptive studies presented a broader, more nuanced construct of parental expectations for their children’s academic, social, functional, and vocational outcomes. These included specific expectations about their performance in school and in specific subjects; their community involvement, romantic experiences, and friendships; their cognitive capabilities and practical skills; and whether and in what capacity they would be employed in the future. We also identified varied approaches to measuring parental expectations within and across domains. Parental expectations were generally lower in studies that compared children with developmental disabilities to typically developing children. Within and across disability categories, there was emerging evidence linking expectations to symptom severity and functional skills, the parents’ level of education, and the family’s access to resources and opportunities like inclusive education. We also found preliminary evidence linking parental expectations to general and specific child and parent outcomes. Nevertheless, most studies focused on factors more proximal to the child, limiting an appreciation of parental expectations’ wider impact. There are also inconsistencies in study reports that require additional research to clarify.
The Scope of Included Studies
Although we were encouraged by the diversity of countries represented in our included studies, we were disappointed to note that publication patterns were consistent with reports indicating that over 90% of published articles in the field of psychology use samples from Western Educated Industrialized Rich and Democratic Countries (Henrich et al., 2010). Although this is not surprising given the resources available in these contexts, concerns are raised in light of reports suggesting that more than 80% of all persons with disabilities live in low-middle-income countries (United Nations Development Program, 2018). Consequently, the findings of this review are likely not representative of global patterns in parental expectations for children with developmental disabilities.
The disproportionate focus on samples whose children have been diagnosed with ASD reflects dramatic increases in ASD-based research that may be attributed to rising prevalence rates and funding opportunities from private and public organizations alike (Amaral, 2011; Dawson, 2013). Even so, most of these studies are cross-sectional and combine parents’ perspectives representing children across a broad range of developmental stages. This also limits conclusions that can be drawn from these findings. The number of studies using primary data to assess questions related to parental expectations is encouraging. Yet, more studies are needed to explore these questions with extensive datasets that facilitate national and international generalization. We discuss these and other limitations in greater detail in the section on limitations and future directions.
The Nature, Predictors of, and Outcomes Associated with Parental Expectations
Beyond assessing the scope of studies examining parental expectations among children with developmental disabilities, we also sought to investigate these expectations’ nature, predictors, and outcomes through the lens of Bronfenbrenner’s bioecological model. Regarding the nature of these expectations, although we set out to explore parental expectations in four main domains, we were still intrigued by the nuances in the construct’s varied operational definitions. This much broader parental expectation construct differs greatly from its narrowly defined counterpart in the general parenting literature, which focuses almost entirely on parents’ expectations for their children’s educational achievement (e.g., Hill & Tyson, 2009). Nonetheless, when applied to children with developmental disabilities, this construct’s multidimensional nature is understandable, given their varied capabilities and challenges. This illustrates the central role of the child and their characteristics in the iterative interactions within and across systems that ultimately shape the child’s development, as illustrated by Bronfenbrenner’s model (Bronfenbrenner & Morris, 2006).
Bronfenbrenner’s model also highlights the role of proximal influences in shaping the child’s development. This review provides strong evidence of how the parent’s perceptions of the child’s symptoms can shape their expectations and preliminary evidence of how these expectations can influence child and parent outcomes directly and indirectly. Although the findings linking perceptions of child symptomatology to parental expectations may seem apparent given the variability witnessed among children with developmental disabilities, child outcomes are not exclusively dependent on symptom severity. For example, Kjellmer et al. (2012) found that although symptom severity accounts for a substantial variance associated with non-verbal communication (i.e., gestures and actions), receptive and expressive language were stronger predictors of non-verbal communication. This aligns with the consistent associations between perceptions of a child’s functioning and parental expectations in our reviewed studies. However, our findings also suggest the potential impact of other factors, such as the child’s school or educational setting, relationships between parents and teachers, and other family background characteristics, cannot be ruled out. Some of these factors may reduce symptom severity, and others may be more viable targets for intervention. Therefore, their continued examination will be critical to advancing the field.
The potential impact of parent-teacher relationships on child outcomes also alludes to mesosystem-level influences, which were rarely explored in the included studies. Arabsolghar & Elkins’ (2000) discovery that parents and teachers held similar expectations for children with ID’s functional skills related to memory is congruent with findings from Zambia, where no significant differences were identified in comparisons between parents, teachers, and healthcare providers in several expectation domains for children with ASD or ID. However, they contrast with findings from Ghana showing significant differences in parents, teachers, and healthcare workers’ multi-domain expectations for children with ASD or ID (Washington-Nortey et al., 2024). The cultural contexts, their prevailing norms, and the characteristics of the participant samples may explain these divergent results. For instance, in more patriarchal contexts, there may be greater deference to professional service providers as the experts. In contrast, in egalitarian contexts or contexts where specific families have greater access to resources than the average citizen, parents may exhibit greater autonomy or optimism, resulting in divergent perspectives.
Other factors more distal to the child but proximal to the parent may also affect the child, as posited by Bronfenbrenner’s description of the exosystem. A parent’s financial and educational resource capital can influence their child’s development by leading them to invest in strategies and resources that may appear contrary to the patterns of their prevailing culture or the resources existing there. To illustrate, Mutua & Dimitrov’s (2001) finding that expectations predict whether a child with an intellectual disability in Kenya would be enrolled in a school context is critical because quality education, particularly for children with developmental disabilities, is not guaranteed in this context. Wealthier parents of children with developmental disabilities from lower-resourced contexts may also travel to better-resourced contexts in search of formal diagnoses and potentially more effective remedies, treatments, and interventions for their children. Even in more privileged countries, resource availability differences in specific geographic areas, which may increase the wait time for specific services, may prompt a search for alternatives and sometimes relocation to better-resourced areas in hopes of receiving services.
The macrosystem, which highlights the influence of cultural norms and structures on a society’s value systems, resources, and facilities, was also alluded to in the studies reviewed. Findings suggest that parental expectations may influence child outcomes directly and indirectly by influencing value systems and enabling parents to utilize and capitalize on existing resources to improve their children’s outcomes. For instance, studies from Asia prioritized different expectations than studies from the United States even when similar measures were used (i.e., Ivey, 2004; Poon, 2013), demonstrating different value systems. The US-based studies’ emphasis on educational achievement may stem from long-held beliefs that post-secondary education is vital for competitive jobs (Camarena & Sarigiani, 2009). Additionally, the availability of policies and laws such as the Individuals with Disabilities Education Act (IDEA) that ensure the provision of quality education in inclusive settings and the development of long-term goals for these children (Martinez et al., 2012; Yell et al., 2006), may contribute to parent perspectives in these regions.
Further, the amount and type of resources and the prevailing norms in these contexts may shape parents’ expectations for their children. This is also consistent with findings by Walker et al. (2016) showing that parents of children with developmental disabilities perceived having a higher quality of life when they had access to good quality resources. This confidence in the quantity and quality of available resources may increase parents’ hope of successful outcomes for their children. In addition, the availability of resources like smaller inclusive education classrooms and parents’ beliefs in their usefulness may encourage parents to utilize them in the hopes of securing better outcomes for their children as these resources (e.g., Martinez et al., 2012). Moreover, access to resources, such as afterschool care facilities, may expose parents to other children with similar disabilities who are on a positive trajectory, increasing parents’ expectations for their own children and the likelihood of continued use of these resources.
Studies that identified associations between parental expectations and parent mental health are also intriguing because they reveal an impact beyond the child. For instance, associations with reduced stress among parents with higher expectations may stem from parents’ sense of assurance about their children’s future outcomes. This assurance may reduce parents’ need to explore multiple options to secure their children’s future continually. Alternatively, it may be that these parents have developed effective strategies with their children that have streamlined their daily activities, reduced their daily stress, and increased their sense of efficacy and satisfaction with life, as evidenced by Arellano et al. (2019). This perspective is also consistent with studies showing that parents’ adoption of specific coping strategies and their utilization of social support and professional services reduced stress associated with raising children with developmental disabilities (Lindo et al., 2016).
Limitations and Future Directions
While this review introduces readers to the rapidly increasing research on parental expectations for children with developmental disabilities, it is important to highlight significant gaps in the knowledge base. Three key areas warrant attention: representational gaps, measurement inconsistencies, and methodological weaknesses.
Representational gaps
First, the disproportionate focus on samples from higher-resourced or better-developed countries is a call for action, considering approximately 95% of children with developmental disabilities live in low and middle-income countries (Olusanya et al., 2018). Future projects should prioritize engaging samples from these majority-world contexts and increasing funding mechanisms that support research in these contexts. As observed in more recent studies, such investigations may highlight different conceptualizations of the domains and operational definitions of parental expectations (Washington-Nortey et al., 2021, 2024, in press). These investigations may also reveal expectation domains that may be more salient to the majority world and must, therefore, be prioritized during intervention development.
Second, we identified representational gaps in participant samples characterizing the included studies. For instance, compared to studies sampling parents of children with either ASD or intellectual disabilities, very few studies focus on children with other developmental disabilities. This may stem from societal trends and funding mechanisms that have made research in some areas more fundable than others. While some findings may apply across disability categories, other factors may impact children with specific disabilities more uniquely. Therefore, equity in future research is critical to advancing the field. This will also help elucidate some of the inconsistent findings of some studies.
There is also a need for more studies examining similar domains of parental expectations and outcomes across and within specific child developmental disabilities. For instance, the predictors of vocational expectations among parents of children with cerebral palsy may differ from those among parents of children with Down syndrome and vice versa. The limited number of studies assessing specific domains of parental expectations within a given disability category precluded our ability to elucidate patterns in the literature. However, increasing the corpus of studies within each disability group will help address this gap. Similarly, increasing the number of studies assessing links between parental expectations and outcomes like parenting stress will elucidate the impact of parental expectations on parents’ mental health.
Future studies must also consider the impact of developmental or chronological age differences on their findings. There were representational gaps in the ages of children represented by their parents in this review. Many studies included parents of a wide range of differently aged children in their sample, limiting inferences into developmentally salient expectations and the probability, factors associated, and potential impact of change over time.
Lastly, within this sub-section, we noted significantly fewer studies targeting factors beyond the microsystem. At the mesosystem for instance, connections between teachers, healthcare providers, and other critical care and service providers of children with developmental disabilities contribute significantly to their growth and development. As demonstrated in more recent studies, care and service providers in specific cultural contexts may hold similar or divergent views and expectations for these children that may impact service provision and outcomes (Washington-Nortey et al., 2024). Studies elucidating the impact of these and other factors across the ecological model will further advance the field.
Measurement and methodological issues
We also identified some limitations associated with methods and measurement. First, various instruments are being used to measure parental expectations. The variety of measures limits the ability to consolidate findings on any particular domain of parental expectation and necessitates efforts to streamline these instruments. Such efforts would further advance the field by increasing instrument reliability and potential in alternative contexts. However, since extant research has largely excluded samples from low-resourced contexts, efforts to consolidate these measures must also investigate other dimensions or domains of parental expectations that may have been missed in the extant literature.
Lastly, increasing the number of longitudinal investigations into the nature and impact of parental expectations for children with developmental disabilities and incorporating novel methodological and analytical strategies will also help to advance the field. For instance, longitudinal investigations can provide insight into changes to expectations, factors that influence these changes, and the impact on child developmental trajectories.
Conclusion
Parental expectations for children with developmental disabilities represent a burgeoning field in parenting research that has implications for children with developmental disabilities and their families. However, there is little consensus on the nature of these expectations, their predictors, and associated outcomes. This review presented emerging evidence on educational, social, vocational/employment, and functional expectations. We shed light on the complex, multidimensional nature of parental expectations for children with developmental disabilities and identified promising microsystem-level predictors related to the child, parent, and school. Also promising are the potential influences of other system-level factors, the impact of expectations on child and parent academic, social, and mental health outcomes, and the evidence of mechanistic influences linking parental expectations and participant demographics to outcomes. However, much work remains to understand parents’ expectations for children with developmental disabilities, as significant representational, methodological, and measurement gaps need to be addressed to clarify the preliminary patterns noted in this review and increase the accuracy of conclusions drawn from these studies. Nonetheless, the evidence presented here suggests that findings from such efforts may positively influence the trajectories of children with developmental disabilities and their families across the globe.
This project was not subject to review by the Institution’s Review Board.
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