Review article
Maternal stress, well-being, and impaired sleep in mothers of children with developmental disabilities: A literature review

https://doi.org/10.1016/j.ridd.2013.09.008Get rights and content

Highlights

  • Maternal stress, well-being, and sleep in mothers of children with DDs were critically reviewed.

  • Mothers reported high levels of stress, depressive symptoms and poor sleep quality.

  • A bidirectional relationship exists between maternal stress and depressive symptoms.

  • A bidirectional relationship also exists between sleep quality and depressive symptoms.

  • Some personal interpretations of the study results were added.

Abstract

Having children with developmental disabilities (DDs) requires a high level of caregiving responsibilities, and existing studies support that mothers of children with DDs experience high levels of maternal stress as well as poor sleep and well-being. Given the fact that the number of children with DDs has increased, an up-to-date literature review is necessary to identify factors associated with maternal stress, sleep, and well-being. In addition, understanding these factors and their relationships may provide better strategies in designing effective interventions that can reduce the burden in mothers of children with DDs. This review summarized 28 scientific research papers that examined maternal stress, sleep, and well-being in mothers of children with DDs in past 12 years. The study findings indicate that mothers of children with DDs experience higher levels of stress than mothers of typically developing children, and it remains high over time. In addition, these mothers often encounter depressive symptoms as well as poor sleep quality. The study results also reveal that there is a bidirectional relationship between maternal stress and depressive symptoms as well as between poor sleep quality and depressive symptoms. For example, higher stress mothers experienced more depressive symptoms. Mothers of children with DDs with poor sleep quality are significantly associated with more depressive symptoms. Child behavior problems were significantly associated with both maternal stress and depressive symptoms, but cautious interpretation is warranted due to the shared variance between child behavior problems, maternal stress, and depressive symptoms. Methodological guidelines for future research involve the use of reliable and valid instruments for the measurement of child behavior problems, maternal stress, and sleep. Recommendations for future research are included.

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.

References (70)

  • S.Y. Lee et al.

    Impaired sleep and well-being in mothers with low-birth-weight infants

    Journal of Obstetric, Gynecologic, & Neonatal Nursing

    (2009)
  • F. Margari et al.

    Parents psychopathology of children with Attention Deficit Hyperactivity Disorder

    Research in Developmental Disabilities

    (2013)
  • D.B. Mitchell et al.

    The well-being of mothers of adolescents with developmental disabilities in relation to medical care utilization and satisfaction with health care

    Research in Developmental Disabilities

    (2008)
  • D. Riemann et al.

    Primary insomnia: A risk factor to develop depression?

    Journal of Affective Disorders

    (2003)
  • P. Salo et al.

    Insomnia symptoms as a predictor of incident treatment for depression: Prospective cohort study of 40,791 men and women

    Sleep Medicine

    (2012)
  • L. Abbeduto et al.

    Psychological well-being and coping in mothers of youths with autism, Down syndrome, or Fragile X syndrome

    American Journal of Mental Retardation

    (2004)
  • S. Ancoli-Israel et al.

    The role of actigraphy in the study of sleep and circadian rhythms

    Sleep

    (2003)
  • B.L. Baker et al.

    Pre-school children with and without developmental delay: Behaviour problems and parenting stress over time

    Journal of Intellectual Disability Research

    (2003)
  • A. Beck et al.

    Pro-social behaviour and behaviour problems independently predict maternal stress

    Journal of Intellectual & Developmental Disability

    (2004)
  • A.M. Berger et al.

    Sleep wake disturbances in people with cancer and their caregivers: State of the science

    Oncology Nursing Forum

    (2005)
  • S.L. Boulet et al.

    Health care use and health and functional impact of developmental disabilities among US children, 1997–2005

    Archives of Pediatric & Adolescent Medicine

    (2009)
  • C.A. Boyle et al.

    Trends in the prevalence of developmental disabilities in US children, 1997–2008

    Pediatrics

    (2011)
  • J. Bromley et al.

    Mothers supporting children with autistic spectrum disorders: Social support, mental health status and satisfaction with services

    Autism

    (2004)
  • A.S. Carter et al.

    Stability and individual change in depressive symptoms among mothers raising young children with ASD: Maternal and child correlates

    Journal of Clinical Psychology

    (2009)
  • S. Cohen et al.

    Psychological stress and disease

    Journal of the American Medical Association

    (2007)
  • S. Cohen et al.

    Strategies for measuring stress in studies of psychiatric and physical disorder

  • Developmental Disabilities Assistance and Bill of Rights Act of 2000. 42 USC §...
  • L.C. Edge

    The role of emotional brain processing during sleep in depression

    Journal of Psychiatric and Mental Health Nursing

    (2010)
  • A.S. Eisenhower et al.

    Preschool children with intellectual disability: Syndrome specificity, behaviour problems, and maternal well-being

    Journal of Intellectual Disability Research

    (2005)
  • E. Emerson et al.

    Socio-economic position, household composition, health status and indicators of the well-being of mothers of children with and without intellectual disabilities

    Journal of Intellectual Disability Research

    (2006)
  • A. Estes et al.

    Parenting stress and psychological functioning among mothers of preschool children with autism and developmental delay

    Autism

    (2009)
  • R.H. Foster et al.

    Caring for the caregivers: An investigation of factors related to well-being among parents caring for a child with Smith–Magenis syndrome

    Journal of Genetic Counseling

    (2010)
  • E.M. Friedman

    Sleep quality, social well-being, gender, and inflammation: An integrative analysis in a national sample

    Annals of the New York Academy of Science

    (2011)
  • S. Gallagher et al.

    Parental stress is associated with poor sleep quality in parents caring for children with developmental disabilities

    Journal of Pediatric Psychology

    (2010)
  • E.D. Gerstein et al.

    Resilience and the course of daily parenting stress in families of young children with intellectual disabilities

    Journal of Intellectual Disability Research

    (2009)
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