Predictors of parenting stress in parents of children diagnosed with autism spectrum disorder: a scoping review

Abstract

Introduction

Identifying the predictors of parenting stress in parents of children with autism spectrum disorder is crucial to provide the best health-care services.

Main text

The scoping review was conducted. Search engines (EBSCO, Springer, PubMed, Ovid, Google Scholar, and Science Direct) were used to collate published studies between the years 2009 and 2020. Keywords used were parenting stress, parental stress, predictors of parenting stress, Autism disorder, Autism, and scoping review. Primary screening of the titles and abstracts of 1039 articles was conducted. The secondary screening of 348 articles resulted in 27 articles included in this review. The reviewed articles revealed core symptoms of the disorder, namely, behavior problems, and socio-communication impairments strongly linked with the high level of parenting stress.

Conclusion

This scoping review is the initial step toward encouraging future efforts to provide supportive interventions for parents of children with autism spectrum disorder.

Introduction

Autism spectrum disorder (ASD) is defined as one of the neurodevelopmental disorders with moderate-to-severe difficulties. These difficulties are related to social interaction, communication, and repetitive and restricted behaviors [1]. Besides, ASD is described as a group of disorders that includes autism or autistic disorder, pervasive developmental disorder, and Asperger syndrome. Among these, autism or autistic disorder is currently the most popular form of ASD [1]. Notably, children diagnosed with ASD have difficulties in many aspects of their lives, including social interaction, behavior, communication, and language [2, 3]. Therefore, it is challenging for children with ASD to manage their behavior, as well as communicate and establish a social relationship with their parents and other people [4, 5]. In addition, there is no doubt that the main features of ASD are behavioral difficulties and socio-communication skill deficiencies, which contribute to significant stress in parents with these children [6,7,8].

Invariably, parents are commonly the first to recognize the developmental variations among children with ASD. With that being said, parents who have a child with ASD are more confused and stressed due to unique stressors and demands over time [9,10,11]. It is observed that the amount of literature on parenting stress is increasing [12, 13]. Everly and Lating [12] defined parenting stress as “a complex construct that involves behavioral, cognitive and affective components, a combination of child and parent characteristics, as well as family situational components as they relate to the person’s appraisal on his or her role as a parent” [p. 28]. Furthermore, Rao and Beidel [13] described parenting stress as the strains and pressures experienced when performing care-related tasks for one’s child. Thus, parenting stress is a common condition that has considerable negative impacts on the physical and mental well-being of parents of children with ASD [14, 15]. As far as it is concerned after conducting a thorough search, there is no scoping review about the predictors of parenting stress among parents with children with ASD. Hence, this study is conducted to provide support programs with a comprehensive understanding to parents who may be more vulnerable to developing mental health problems. It is also hoped that these supportive programs could assist parents in coping with their children with ASD and living positively as a family unit. Health-care professionals and nurses working with children with ASD may use this scoping review finding to reduce parenting stress and improve health well-being.

Main text

Aim

The scoping review is conducted to identify and map the evidence available on the predictive variables correlated with the high level of parenting stress among parents with children with ASD.

Methods

Various systematic methods available to review published literature were considered and decided. This was performed to ensure that a scoping review of published studies could be conducted as the best way of mapping the trends in predictors of parenting stress research for the last decade. The scoping review approach was especially useful in examining a widely covered area to comprehensively map the literature and identify core concepts, evidence, or published research gaps. Dissimilar to systematic reviews or meta-analyses, scoping reviews did not even narrow the review parameters to clinical trials or require quality assessment. However, this form of the review was rigorous and methodological in its approaches to review the range, extent, and nature of research activity in a specific field. The pioneering work of Arksey and O’Malley [16] was employed in developing our scoping reviews. Arksey and O’Malley [16] stated that the five steps of the scoping review as presented below.

Stage 1: Identifying the research question

This scoping review attempted to answer the following research question:

What are the predictive factors correlated with the high level of parenting stress among parents with ASD children?

Stage 2: Identifying the relevant studies

Research papers were searched using the following medical databases: EBSCO, Springer, PubMed, Ovid, and Science Direct. Apart from that, search terms used for review were parenting stress, parental stress, Autism disorder, Autism, Autistic disorder, and scoping review. Databases were also searched with combinations of keyword search terms, medical subject headings, and key subject headings joined together with the Boolean operators “AND” or “OR.” Moreover, a search was conducted for literature to identify studies published and focused on the predictive factors associated with a high level of parenting stress in parents with ASD children. Figure 1 PRISMA 2009 diagram shows the flow of literature studies search. First, the initial search found 1201 full-text papers through the search engine results, and an additional seven articles were found from other sources, such as PsycINFO (for psychology-related literature) and ERIC (for education-related literature). Duplication of research papers was removed from the list of those discovered. After that, 1039 papers were screened mainly for the relevant title and abstract articles. The papers’ abstracts were then thoroughly read, while 348 papers had been subjected to secondary examination for eligibility after screening. Lastly, the final search for the literature that included 27 papers was conducted.

Fig. 1

PRISMA 2009 flowchart for the study selection process

Stage 3: Determining study selection

Full-text articles written in English between 2009 and 2020 that examined parenting stress or parental stress as the main study outcome were included. The exclusion criteria were (1) systematic review, (2) articles reviewed, (3) meta-analysis papers, and (4) case reports. The titles and abstracts were read and screened by two authors. The authors independently reviewed the full-text version of the relevant articles. The final decision was determined based on the inclusion and exclusion criteria. Any disagreements were fixed by discussion.

Stage 4: Charting the data

Methodological characteristics were synthesized from the adapted JBI Template study details, characteristics, and result extraction instrument [17]. The study details charted were citation details, namely, the author or authors, year of publication, country, study aim and design, sample characteristics, and results.

Stage 5: Collating, summarizing, and reporting the data

Results of the published research on predictive factors of parenting stress in parents with ASD children from 2009 to 2020 are displayed in Table 1.

Table 1 Summary of published studies on predictors of parenting stress in parents of children with Autism Spectrum Disorder (2009–2020)

Discussion

To the authors’ knowledge, no scoping review had investigated the predictive factors correlated with a high level of parenting stress. The evidence suggested that behavioral problems and social-communication impairments were the two most common predictor factors of the high parenting stress level.

Behavior problems

As time had passed, more studies related to behavior problems correlated with a high level of parenting stress had been published. The behavior problem was identified in 13 studies as a correlate with high parenting stress [11, 22, 23, 25, 26, 28,29,30,31, 33, 35, 37]. However, there seemed to be contradictory evidence about the significance of the relationship between parenting stress and problem behaviors. For instance, the findings of a study by Su and colleagues [21] and Peters-Scheffer et al. [38] revealed that the relationship between parenting stress and problem behaviors was not significant. These studies [21, 38] only considered the viewpoints of the mothers and lacked involving the views of the fathers.

Additionally, the small sample size of Su and colleagues’ study [21] and Peters-Scheffer et al.’s study [38] may not have been adequate for the accurate prediction of cross-section study results concerning the association between behavior problems and high level of parenting stress. The small sample sizes may have also affected the findings and led to discrepancies. Additionally, the inclusion of both parents in the study allowed the researcher to identify the predictors of parenting stress of both fathers and mothers systematically that considered its effect on parent’s well-being. Hence, to study the whole family structure, it is essential to include both parents and to recruit a larger study sample in future research.

Social-communication impairments

The scoping review highlighted predictor variables associated with a higher level of parenting stress. In the literature studies, socio-communication impairment was another identified correlation with some contradictory evidence concerning its association with a high level of parenting stress. Seven studies [20, 24, 27, 30, 31, 33, 39] reported that socio-communication impairment is associated with a high level of parenting stress. However, there appears to be some contradictory evidence concerning the significance of the relationship between a high level of parenting stress and impairments in social-communication skills [25, 26, 32, 34, 38, 42].

The small sample size of previous literature studies [25, 26, 32, 34, 38, 42] was one of the most commonly reported challenges, making it insufficient for the precise estimation results in cross-sectional studies. As a result, the small sample size was a contributing cause for the variation in the association between high levels of parenting stress and impaired socio-communication skills. Apart from that, the population study sample difference was a potential reason for the variation in the correlation between parenting stress and impairments of socio-communication skills. The findings of a study by Giovagnoli et al. [26] demonstrated that there was no significant association between a high level of parenting stress and impairments of socio-communication skills. In Giovagnoli et al.’s study, the population sample encompassed only mothers with ASD children and male children with ASD. Given the participant’s different characteristics, they may show different results representing their various demands. Consequently, it seemed that this participant’s profiles might be the cause of contradicting findings. This was because the absence of both parents’ gender was limited to identify the correction between parenting stress and socio-communication skills impairments. To conclude, the small sample size may not have been appropriate to accurately determine the cross-sectional study results concerning parenting stress and impaired socio-communication skills. Therefore, further research using larger samples, including both parents who have children with ASD, should be implemented.

Strengths and limitations

This was the first scoping review to describe and identify the breadth of evidence of predictive factors and a high level of parenting stress in parents who have children with ASD. It was noted that the methodology, such as the broad criteria for inclusion and a search strategy, had facilitated the comprehensive identification of studies. The scoping review was also conducted meticulously and robustly. For example, two reviewers independently performed every stage of the screening, selection, and evaluation of the included papers’ eligibility. Besides that, theoretical frameworks [16] were used to evaluate the data supporting the results by conducting different scoping analysis stages, including identifying the research question, identifying relevant studies, determining the study selection, charting the data, and collating, summarizing, and reporting the results. Notwithstanding several strengths, there were limitations worthy of note in this scoping review. First, only articles published in English were included. This may cause some articles related to this review not to be captured. Second, most of the studies were conducted in Western countries, so the findings were skewed toward this specific culture. Finally, a formal quality assessment was not undertaken for most identified papers.

Conclusion

Parenting stress in children with ASD has gained growing attention recently. The current scoping review provides a holistic view concerning the main predictive factors correlated with a high level of parenting stress and offers a good starting point for developing support programs for parenting. Based on the scoping review, there have been consistencies regarding the predictor variables. Previous studies have provided a consistent picture to agree on core ASD symptoms as correlating with a high level of parenting stress. As a result, this scoping review makes a significant contribution to research as a key to the development of an interventional support program that focused mainly on ASD core symptoms. The findings may also make a crucial contribution in helping parents improve their adaptation to stressful situations.