Coping strategies, caregiving burden, and depressive symptoms of Taiwanese mothers of adolescents with autism spectrum disorder

Highlights

• Mothers of adolescents with ASD perceived their caregiving burden as heavy and symptoms of depression as severe.

• Greater use of problem-focused coping was associated with lower levels of caregiver burden and fewer depressive symptoms.

• Problem-focused coping acted as a buffer when caregiving burdens were high.

• Problem-focused coping was more protective against symptoms of depression.

• Problem-focused coping was the main coping style for Taiwanese mothers of adolescents with ASD.

Abstract

Little research focuses on the caregiving experiences of Taiwanese mothers of adolescents with autism spectrum disorder (ASD). The effects of the caregiving burden and coping strategies on the depressive symptoms of 60 of these mothers were examined. The adolescents they cared for ranged from 10 to 19 years old (mean age: 14.7 years). Mothers completed self-report written questionnaires. Findings indicated that greater use of problem-focused rather than emotion-focused coping was generally associated with lower levels of caregiver burden and fewer depressive symptoms. Problem-focused coping acted as a buffer when caregiving burdens were high. Specifically, actively confronting, planning, and suppressing competing activities as coping strategies moderated the effect of the caregiving burden on the depressive symptoms of these mothers. This significant buffering effect reflected adaptation to the caregiving burden. Awareness of the effects of coping strategies on maternal well-being could serve as a valuable guide for practitioners.

Introduction

Autism spectrum disorder (ASD) is a major developmental disability. Over the past 25 years, the prevalence of ASD dramatically increased in Taiwan (Lai, Tseng, Hou, & Guo, 2012). The pooled prevalence of ASD estimated from 18 studies was 26.6 per 10,000 in mainland China, Hong Kong, and Taiwan (Sun et al., 2013). The current population in Taiwan is 23.4 million. According to a Taiwan Department of Health report (2014), the number identified with ASD in Taiwan is 13,544: 9439 3–17-year-olds and 4105 18 years old or older. Having a family member with ASD poses unique and long-term challenges for all the other family members. The symptoms and disabilities associated with ASD present significant challenges to the primary caregiver, who most often is the mother. Mothers have often reported their great burden associated with caring for their child with ASD (Hartley et al., 2013, Lin, 2011, Seltzer et al., 2000, Stuart and McGrew, 2009) and their high levels of depression (Abbeduto et al., 2004, Higgins et al., 2005, Ingersoll and Hambrick, 2011).

Mothers often spend more time than do other family members providing care for their children with ASD, and experience more fatigue, arguments, and stressful events in their daily lives (Smith et al., 2010). Caring for a child with ASD can lead to poor psychological well-being for many mothers (Abbeduto et al., 2004, Barker et al., 2011, Benson and Karlof, 2009, Hastings, 2008, Ingersoll and Hambrick, 2011). For instance, in contrast to mothers of children with other disabilities, mothers of children with ASD often report more severe depressive symptoms (Abbeduto et al., 2004, Singer, 2006, Weiss, 2002).

When facing the challenges of their caregiver burden, mothers of adolescents with ASD may seek different types of coping strategies and resources to cope with stressful situations. Lazarus and Folkman (1984) described two major types of coping strategies: problem-focused coping and emotion-focused coping. Problem-focused coping is an attempt to change or manage stressful situations, and emotion-focused coping is an attempt to regulate one's emotional responses to stressful situations. Evidence suggests that coping strategies are important factors associated with maternal well-being (e.g., Benson, 2014, Smith et al., 2008) and may moderate the relationship between stressors and parenting stress in the parents of children with ASD (Dunn et al., 2001, Hastings et al., 2005, Smith et al., 2008). Studies of Western families (Abbeduto et al., 2004, Benson, 2014, Glidden et al., 2006, Hastings et al., 2005, Smith et al., 2008) indicate that greater use of emotion-focused coping increased the severity of depressive symptoms and exacerbated psychological distress. However, greater use of problem-focused coping strategies may contribute to more positive adaptation (Benson, 2014, Smith et al., 2008). All of these studies focus primarily on how these coping strategies buffer the effects of the child's characteristics (e.g., autism symptoms or behavioral problems) on maternal psychological distress and parenting stress (Lyons et al., 2010, Smith et al., 2008).

Considerable attention has recently been paid to the potential positive effects on parents of caring for a child with ASD. For example, many parents report that raising a child with ASD has led to the positive effects of personal growth for the parents (Hastings & Taunt, 2002), a vibrant spiritual life (Gray, 2006), and other benefits for the family (King et al., 2006). Some families do cope with autism successfully (Gray, 2002). There is evidence that coping strategies buffer the caregiving strains and stress-related depression of mothers of a child with ASD (Benson, 2010, Benson, 2014, Smith et al., 2008, Smith et al., 2010). Moreover, the age of the child with ASD (Singer, 2006) and cultural context (Benson, 2006, Glasberg et al., 2007, Lin et al., 2010, Zhang et al., 2013) may affect how mothers cope with their caregiving challenges.

Adolescence is identified as the period in human growth and development from ages 10 to 19 (World Health Organization, 2014). Woodman and Hauser-Cram (2013) say that adolescence is a stressful time for parents of children with developmental disabilities because they face increasing challenges related to their child's continued dependence, social isolation, puberty, and transition to adulthood. Moreover, there is a risk for increasing levels of problematic behaviors, and mothers of adolescents and adults with ASD continue to report concerns about behavior problems as the most difficult aspect of caregiving (Lounds et al., 2007, Shattuck et al., 2007). One of the most consistent predictors of parenting stress and psychological distress among mothers of individuals with ASD has been found to be their children's behavior problems (Blacher & McIntyre, 2006). Although some studies have shown that mothers of children with ASD may improve their psychological well-being over time (Gray, 2002, Lounds et al., 2007), Smith et al. (2008) found that mothers of adolescents with ASD reported more negative emotion than did mothers of toddlers with ASD. The age-related differences in the use of specific coping strategies may be observed in developmental stages across the lifespan. Despite the abundance of research on the coping strategies of parents of young children with ASD, published research that focuses on the coping strategies of mothers of adolescents with ASD is sparse. Only a few studies have examined the coping strategies for caregivers of adolescents with ASD (e.g., Abbeduto et al., 2004, Benson, 2014, Lin et al., 2010, Smith et al., 2008). These limited results suggest that there is a great need for information that will help us understand coping strategies under these circumstances, specifically when the son or daughter with ASD is an adolescent.

Research on Taiwanese families, however, has focused primarily on preadolescent children with ASD (e.g., Lin, Tsai, & Chang, 2008). Only one published study (Lin et al., 2010) has focused on the coping strategies of caregivers of adolescents with ASD in the Chinese cultural context. Lin et al. (2010) reported that coping strategies in mothers of adolescents and adults with ASD in Taiwan and the United States were different because of cultural differences. The people of Taiwan are influenced mainly by the Chinese culture. They are strongly influenced by the ethical and philosophical system developed from the teachings of the Chinese philosopher Confucius, namely Confucianism (Yeh, Arora, & Wu, 2006). Confucian beliefs about fate and the forces of heaven may provide a source of emotional support for caregivers to adapt to adversity when they face challenges related to the child's disability (Huang et al., 1998). Chinese family caregivers with Confucian beliefs may be better able to endure hardship and overcome challenges related to caring for a child with a disability (Hsiao and Van Riper, 2010, Lin, 2014).

Additionally, one of the major expected family obligations for mothers in Chinese cultural contexts is caring for all family members (Chiou, Chen, & Wang, 2005). Most mothers in Taiwan are often seen as appropriate unpaid caregivers for children with ASD and may face great burdens when caring for a child with ASD (Shu, 2002). The protective role of coping strategies on the caregiving burden and the depression it engenders in Taiwanese mothers has rarely been examined. The practitioners need to consider these buffering effects of coping strategies on stress-related depression in order to address the service needs of Taiwanese mothers of adolescents with ASD. Thus, the present study evaluated the effects of the caregiving burden and of specific coping strategies on the depressive symptoms in Taiwanese mothers of 10–19-year-old children with ASD. Two central questions were examined: (1) are coping strategies and the caregiver burden associated with depressive symptoms? (2) To what extent do coping strategies buffer the caregiving burden and depressive symptoms? Having a better understanding of how coping strategies are associated with the caregiving burden and depressive symptoms will help practitioners provide more appropriate family-centered interventions for mothers of adolescents with ASD in Taiwan.