Research PaperContributors to well-being and stress in parents of children with autism spectrum disorder
Introduction
Parents of children with autism spectrum disorder (ASD) are at a greater risk of increased stress and mental health problems than parents of typically developing (TD) children (Totsika, Hastings, Emerson, Lancaster, & Berridge, 2011). ASD can, in fact, be one of the most demanding disorders in terms of threats to parents’ well-being and mental health (Seltzer, Krauss, Orsmond, & Vestal, 2001). It has been repeatedly shown that parents of children with ASD report more stress and present more depressive symptomatology than parents of TD children (Duarte, Bordin, Yazigi, & Mooney, 2005; Lee, 2009) and parents of children with other disorders (Abbeduto et al., 2004; Dumas, Wolf, Fisman, & Culligan, 1991). They also report more anxiety (Bitsika and Sharpley, 2004, Lee, 2009), more mental health problems (Montes & Halterman, 2007), and decreased well-being (Nikmat, Ahmad, Oon, & Razali, 2008). However, even though families of children with ASD face serious difficulties (Dumas et al., 1991), not all concerned parents show problems with well-being and stress.
Past research has characterized the experience of parenting a child with ASD as stressful and as presenting a threat to parents’ well-being (e.g. Seltzer et al., 2001). Past research has also described coping strategies used by these parents (e.g. Pottie & Ingram, 2008). However, to our knowledge, no studies have sought to understand how the different factors that have been recognized for years as predictors of stress (e.g. Lazarus & Folkman, 1984) can explain well-being and stress in parents of children with ASD. Identifying these processes in parents of children with ASD can offer outlets to intervene with these parents to improve their well-being and decrease their stress. Therefore, the aim of the present study was to explain why faced with the same life-event (i.e. having a child diagnosed with ASD) some parents present decreased well-being and stress while others do not.
The transactional model of stress and coping theory, proposed by Lazarus and Folkman (1984), defines stress as an emotional response to a situation or an event, that is important for the individual, and that is perceived as exceeding the individual’s resources (Lazarus & Folkman, 1984). This model is based on the cognitive-relational theory of stress (Lazarus & Folkman, 1987) which conceptualizes stress as resulting from a recursive dynamic interaction between environmental antecedents such as a life-event or daily hassles (e.g. demands, constraints and resources, ambiguity, and imminence of a situation), person antecedents (e.g. goal hierarchies, attributions, and belief systems), and mediating processes (e.g. appraisal and coping). The interaction between these three aspects can be reflected in immediate and long-term effects such as the individual’s subjective well-being, social functioning, stress, and somatic health. Using this model, differences on well-being and stress of parents of children with ASD could be understood as resulting from a dynamic contribution of (a) environmental antecedents such as the fact of having a child diagnosed with ASD and the child’s negativity, (b) person antecedents such as parents’ attributions and belief systems regarding their child, and (c) mediating processes such as parents’ capacity to cognitively reappraise (see Fig. 1).
(a) Environmental Antecedents
Some of the environmental antecedents that can contribute to decreased well-being and increased stress in parents of children with ASD can be related to the life event of having a child diagnosed with ASD and to the daily hassles this represents. Parents need to adapt to new expectations regarding their child’s future (Brogan & Knussen, 2003). Parents are also challenged by factors that are related to dealing with a chronic disorder (i.e. repeating strains) and they often describe themselves as being isolated and having to fight all the way (Woodgate, Ateah, & Secco, 2008). Furthermore, the fact that their children have normal appearances, which do not signal any disorder, but often present disruptive and sometimes antisocial behaviors, can lead to stigmatization and lack of understanding from others (Gray, 1993, Gray, 2002).
Daily hassles related to having a child with ASD can also be reflected at the level of the child’s negativity and the difficult behaviors they often present. Children with ASD have more emotional and conduct problems compared to TD children (Pouw, Rieffe, Oosterveld, Huskens, & Stockmann, 2013; Rieffe, Camodeca, Pouw, Lange, & Stockmann, 2012; Russell and Sofronoff, 2005, Samson et al., 2014) as well as compared to children with other disorders (Bradley, Summers, Wood, & Bryson, 2004; Brereton, Tonge, & Einfeld, 2006; Eisenhower, Baker, & Blacher, 2005; Green, Gilchrist, Burton, & Cox, 2000). These difficult behaviors are also present in children with ASD who do not have intellectual disability (Pearson et al., 2006, Totsika et al., 2011).
(b) Person Antecedents
According to the transactional model of stress and coping theory (Lazarus & Folkman, 1984), another factor that can determine stress is related to how individuals construct a meaning about the situation, the attributions they create, and their belief systems. Parents of children with ASD often describe these as being difficult, with frequent and long-lasting tantrums, easily frustrated, inattentive, and withdrawn or depressed. Through research it has been found that emotional and behavioral problems in children with ASD play a role in parents’ well-being and mental health. It has been reported that observed and parental perceptions of regulatory problems and difficult behaviors in children with ASD are related to parents’ increased stress (Davis and Carter, 2008, McStay et al., 2013). Furthermore, parental perceptions of emotional and behavioral problems in children with ASD contribute significantly more to the explanation of parents’ well-being and mental health than children’s ASD diagnosis (Herring et al., 2006). This relation may be due to the additional burden children’s emotional and behavioral difficulties represent for parents (Lecavalier, Leone, & Wiltz, 2006). Another possible explanation holds that children who are unhappy and have emotional or behavioral problems may lead parents to question their parenting skills because they feel responsible (McStay et al., 2013).
(c) Mediating Processes
Finally, specific appraisals and coping styles can play a significant role in determining parents’ well-being and stress. Parents of children with ASD who use escape, avoidance (Dunn, Burbine, Bowers, & Tantleff-Dunn, 2001; Hastings et al., 2005), or blaming (Pottie & Ingram, 2008) as coping styles show more negative well-being and mental health outcomes. Parents who use distraction, problem solving, and reappraisal report more positive well-being and mental health outcomes (Dunn et al., 2001, Pottie and Ingram, 2008, Sivberg, 2002). Particularly, reappraisal has been suggested as a strong protective factor against adverse life events (Troy & Mauss, 2011). This type of emotion regulation strategy involves re-evaluating events with respect to their personal meaning (Lazarus, 1999). How parents appraise and reappraise specific situations will thus essentially determine their impact.
In this line of reasoning, the way parents of children with ASD evaluate the different challenges they face may potentially determine their well-being and stress. Several studies showed that specific emotion regulation strategies in parents of children with ASD are linked to better well-being and mental health outcomes (Dunn et al., 2001, Pottie and Ingram, 2008, Sivberg, 2002). However, it is not clear if parents of children with ASD, compared to parents of TD children, differ in the use of such specific strategies, such as reappraisal. In one study, it was found that parents of children with ASD used more self-control than parents of TD children but groups did not differ in reappraisal as an emotion regulation strategy (Sivberg, 2002). In a group of studies evaluating parents’ emotion regulation strategies during parent-child interactions it was found that parents of children with ASD used less strategies that facilitate emotion regulation such as cognitive reappraisal and emotional reframing, than parents of TD children (Hirschler-Guttenberg, Golan, Ostfeld-Etzion, & Feldman, 2015). However, mothers of children with ASD, compared to mothers of TD children, reported using more effortful control strategies, such as inhibitory and attentional control (Hirschler-Guttenberg, Feldman, Ostfeld-Etzion, Laor, & Golan, 2015), and used more simple regulation facilitation strategies, such as providing physical comfort to their child, but did not differ in comparatively complex regulation facilitation strategies, such as cognitive reframing and emotional reflection (Ostfeld-Etzion, Golan, Hirschler-Guttenberg, Zagoory-Sharon, & Feldman, 2015).
The aim of this study is to analyze how different factors that are related to having a child with ASD interact and can determine parents’ well-being and stress. Understanding these processes can be informative in explaining why some parents of children with ASD experience stress while others do not. The present study is based on 30 years of research that conceptualize stress as a function of a recursive, dynamic interaction between the individual and the environment (Lazarus & Folkman, 1984). Based on the transactional model of stress and coping theory (Lazarus & Folkman, 1984) we hypothesize that well-being and stress of parents will be a product of (a) environmental antecedents, (b) person antecedents, and (c) mediating processes (see Fig. 1). We expect therefore that parents of children with ASD, compared to parents of TD children, will have reduced well-being and increased stress (Fig. 1, outcome). However, because not all parents of children with ASD experience decreased well-being and stress, we hypothesize that children’s negativity (Fig. 1, predictor a), parents’ belief systems regarding their children’s difficult behaviors (Fig. 1, predictor b) and parents’ capacity to reappraise (Fig. 1, predictor c) will be more determinant of parents’ well-being and stress than ASD diagnosis.
Section snippets
Participants
A convenience sample of 37 parents of children previously diagnosed with ASD,1
Group differences
Independent samples t-tests were used to compare group differences among the ASD group and the TD group in the outcome and predictor variables (Table 2). Regarding the outcome variables, it was found that parents of children with ASD, compared to parents of TD children, reported lower subjective well-being (higher DERS score) [t(64) = 2.36, p < 0.05, r = 0.28], and showed more physiological stress (lower resting HRV) [t(45) = 2.55, p < 0.05, r = 0.36]. Regarding the predictor variables, it was found that
Discussion
The overall aim of the present study was to analyze how different factors determine parents’ well-being and stress; with this we want to identify protective factors that can be used to improve well-being and prevent stress in parents of children with ASD. In order to achieve this, we analyzed parents’ well-being and stress in the framework of the transactional model of stress and coping theory (Lazarus & Folkman, 1984).
Conclusions
Despite some limitations, the present study shows strong implications for intervention and prevention programs addressing parents of children with ASD. Findings clearly highlight the importance of parents’ evaluation and appraisals and thus underline the potential of cognitive-behavioral trainings aiming at improving parents’ well-being and reducing their stress. More specifically, our results suggest that cognitive reframing of their children’s problems by targeting parents’ attributions and
Conflict of interest
The authors declare that they have no conflict of interest.
Ethical standards
The present work was carried out in accordance with the ethical standards of the ethics review panel from the University of Luxembourg and with the Declaration of Helsinki as revised in 2000.
Informed consent
Informed consent was obtained from all participants.
Acknowledgements
The present work was funded by the University of Luxembourg. The funding source had no involvement in the study design, collection, analysis, interpretation of data, writing of the report, or in the decision to submit the article for publication.
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