Review articleMaternal stress, well-being, and impaired sleep in mothers of children with developmental disabilities: A literature review
Introduction
According to Public Law 106-402, the Developmental Disabilities and Bill of Rights Act, developmental disabilities (DDs) are defined as a group of severe chronic mental and/or physical conditions that result in substantial limitations in at least three of the following areas; self-care, receptive and expressive language, learning, mobility, self-direction, capacity of independent living, and economic self-sufficiency. Developmental disabilities are lifelong conditions that are typically originated during childhood (Developmental Disabilities Assistance and Bill of Rights Act of 2000). Examples of DDs include intellectual disabilities (IDs), neuromuscular disorders such as cerebral palsy, blindness and deafness, epilepsy, and autism, genetic disorders such as Down syndrome and Fragile X syndrome, and other developmental delays (Boulet et al., 2009, Developmental Disabilities Assistance, 2000, McCallion and Nickle, 2008). About 15% of US children aged 3–17 years, or 10 million children, experience DDs, and the number of children with DDs has significantly increased in the past 15 years (from 12.84% in 1997–1999 to 15.04% in 2006–2008) (Boyle et al., 2011). Due to the multiple physical and intellectual limitations, DDs have a profound impact on a child's health and function as well as health care utilization. For example, 41.4% children with DDs reported they have multiple disabilities (Boulet et al., 2009). In addition, children with DDs reported (1) greater limitation in their ability to walk, run, or play; (2) more needs for special equipment and home health care; and (3) higher long-term (>3 months) use of prescription medication than children without DDs (Boulet et al., 2009). Thus, raising children with DDs requires a high level of long-term caregiving far beyond the usual needs of typically developing children as they grow.
Having children with DDs often requires a high level of caregiving responsibilities due to complex limitations in activities of daily living as well as prolonged medical conditions (Boulet et al., 2009, Raina et al., 2004). In most studies of children with DDs, mothers are the primary caregivers and play a pivotal role in managing their child's care and needs. The evidence also showed that mothers experienced more stress associated with child rearing and parenting than fathers. For example, in a study with parents of children with IDs, mothers’ perceived daily parenting stress increased significantly across the preschool to early school-aged period, but fathers’ level of perceived daily parenting stress was not only lower, but more stable over time (Gerstein, Crnic, Blacher, & Baker, 2009). Similarly, mothers of children with DDs reported higher levels of parenting stress scores falling within the clinical range (84%) than fathers of children with DDs (67%) (Oelofsen & Richardson, 2006).
Caregiving and raising children with DDs often described in terms of stress. Stress is a multi-dimensional construct and can be operationalized in various ways (Crnic, Arbona, Baker, & Blacher, 2009). Within the context of families of children with DDs, stress is often related with having children with DDs (child related) or parenting and child rearing. The stressful experiences are considered as person–environment interactions, in which both external stressors and available psychological, socioeconomic, and cultural resources influence on the person's appraisal of the stressor (Lazarus & Folkman, 1984). Thus, understanding factors associated with maternal stress is a necessary step toward the expanding current knowledge of stress in mothers of children with DDs.
In general, exposure to prolonged or chronic psychological distress has shown to result in negative health outcomes, ranging from impaired sleep to negative psychological and physiological well-being. When the body is unable to respond effectively to stressful challenges, this ineffective response is believed to produce a harmful effect due to activation of neural, endocrine, and immune systems (McEwen, 1998). Behavioral changes such as increased smoking and drinking alcohol, decreased physical activity, or decreased sleep also often occur as adaptations or coping mechanisms to stress response (Cohen, Janicki-Deverts, & Miller, 2007). These ineffective physiological and behavioral responses to stress increase susceptibility to negative health outcomes and well-being (Cohen et al., 2007, McEwen, 1998). In relation to maternal stress, depression or depressive symptoms are the most frequently reported health outcome in the literature of mothers of children with DDs. For example, a meta-analysis of findings from 18 studies revealed that mothers of children with DDs are at elevated risk of depression compared to mothers of nondisabled children (Singer, 2006). In this meta-analysis, almost one third (29%) of mothers of children with DDs fell on or above the clinical cut-off for high depressive symptoms compared to 19% of mothers of children without disabilities in the comparison group, indicating a 10% difference in prevalence of depression between two groups.
Recently, the importance of sleep has been recognized in relation to stress and well-being. Sleep is essential for physical and psychological health as well as overall well-being (Kryger, Roth, & Dement, 2005), and impaired sleep has been associated with negative health outcomes, such as low quality of life (Zammit, Weiner, Damato, Sillup, & McMillan, 1999), depression (Salo et al., 2012) and activation of the immune response (Friedman, 2011). Thus, examining the role of sleep between stress and various health outcomes within this population is critical for better understanding the health and well-being of mothers of children with DDs.
Given the fact that the number of children with DDs has increased (Boyle et al., 2011), an up-to-date literature review is necessary to understand the burden of mothers of children with DDs. In addition, a systematic review of impaired sleep among mothers of children with DDs is the next logical step because considerable research has linked both maternal stress and depressive symptoms to impaired sleep (Riemann and Voderholzer, 2003, Tsuno et al., 2005). An updated and more comprehensive understanding of these relationships will not only help in identifying mothers who are more at-risk for negative health outcomes, but it will also assist in designing more effective interventions by targeting improvement of unmet health care needs among mothers of children with DDs. Therefore, the purposes of this literature review are to; (1) synthesize the existing research findings of maternal stress, well-being, and sleep in mothers of children with DDs; (2) examine the operational definitions as well as indicators of maternal stress, well-being, and impaired sleep in the current literature; and (3) critically evaluate the research methods used and offer recommendations for future research in this area.
Section snippets
Methods and review criteria for the study
The search was performed on following four databases, (1) MEDLINE, (2) CINAHL, (3) PsychINFO, and (4) PubMed, to locate all studies designed to examine maternal stress, impaired sleep, psychological as well as physiological well-being in mothers of children with DDs. Because the definition of developmental disability encompasses a broad range of conditions, such as autism, Down syndrome, cerebral palsy, intellectual disability, and other developmental delay, the search also included these
Results
To facilitate organization of the results section, the studies are summarized in Table 1, Table 2, Table 3, Table 4: the studies of maternal stress in Table 1; the studies of maternal well-being in Table 2; the studies of both maternal stress and well-being in Table 3; and the studies of maternal sleep in Table 4.
Study designs and samples
Overall, the majority of studies were cross-sectional designs that were not designed to understand causation. There is a lack of studies with longitudinal designs to examine the trajectory of the changes in stress over time for these mothers. Caring for children with DDs often last for many years, and the researchers are beginning to understand long-term psychological and physical outcomes on these mothers. Given that two existing longitudinal studies showed the conflict results, more studies
Conclusion
Findings from this review indicate that mothers of children with DDs experience higher levels of stress than mothers of typically developing children. In addition, these mothers often encounter depressive symptoms as well as poor sleep quality. Although there is a relationship between maternal stress and depressive symptoms as well as between sleep quality and depressive symptoms, the causal path is unclear. Child behavior problems were significantly associated with both maternal stress and
Acknowledgement
The author would like to thank Dr. Patricia Clark at Georgia State University for reviewing as well as providing guidance throughout the preparation of this manuscript.
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