Academic journal article The Journal of Rehabilitation

Factors Affecting Perceived Stress among Korean Caregivers of Transition-Age Youth with Intellectual and Developmental Disabilities Using the Double ABCX Model

Academic journal article The Journal of Rehabilitation

Factors Affecting Perceived Stress among Korean Caregivers of Transition-Age Youth with Intellectual and Developmental Disabilities Using the Double ABCX Model

Article excerpt

For the families of youth with intellectual and developmental disabilities (IDD), the excitement of the transition to adulthood is often overshadowed by stress, confusion, and concern over the higher risk of poor social, employment, and quality of life outcomes faced by these youth (Henninger & Taylor, 2014; Newman et al., 2011). IDD refers to a broad group of lifelong disorders that present at birth or early in life and impact an individual's physical, intellectual, social, and/or emotional development, such as intellectual disability (ID), autism spectrum disorder (ASD), and cerebral palsy (CP). One of the major issues facing transition-age youth with IDD is maintaining access to services (e.g., rehabilitation services, special education) as these supports are often terminated upon the legally recognized transition to adulthood regardless of need (Bottos, Feliciangeli, Sciuto, Gericke, &Vianello, 2001).

How a family navigates this transition is a process of dynamic adaptation that each family begins following their child's disability diagnosis and continues throughout their child's development (Karst & Van Hecke 2012; Manning, Wainwright, & Bennett, 2011). The transition years in particular are a critical period for obtaining supports, instruction, and linkages that can directly benefit post-school outcomes for young individuals with IDD and their families (Carter, Austin, & Trainor, 2012). Caregivers play a crucial role during this time (e.g., Boehm, Carter, & Taylor, 2015).

In South Korea, there are over 170,000 individuals with ID and almost 17,000 individuals with ASD (Ministry of Health and Welfare, 2012). The importance of independence and self-determination for these individuals and others with IDD has generally been overlooked, with rehabilitation professionals often asking caregivers to make decisions on their behalf. Recently, South Korea passed the "Developmental Disabilities Act", which aims to ensure support services are provided in a manner that is consistent with the recipient's life stage and affirming of their right to effective social participation (Department of Health and Human Services, The Law No. 12 844, 2015). That such a law is needed today implies significant disparities persist in a number of key life domains for young adults with IDD, particularly with regard to transition planning. Considering that South Koreans under the age of 18 with IDD typically live with their parents (Cho & Kahng, 2015) and continue to do so into adulthood, this legislation and the challenges it attempts to address have a major and direct impact on the parents why typically serve as these youths' primary caregivers (Cho et al., 2011).

These parents report a number of stressors, including health problems, financial issues, anxiety over their children's future care, and apprehension about approaching professionals for assistance (Dillenburger & McKerr, 2009; Park & Chung, 2015). Mothers in particular may be more vulnerable to experiencing the physical and mental health issues associated with providing long-term care for a child with a disability, as they are more likely to act as the primary caregiver, giving up work or other engagements outside the home if necessary (Chou, Kroger, & Pu, 2018; Park & Un, 2012; Yang & Rosenblatt, 2008). South Korean society often expects mothers to minimize their career activities and focus on child rearing (Park & Un, 2012; Yang & Rosenblatt, 2008). Given that a mother's work providing care for children is typically taken for granted (Park & Un, 2012), mothers in South Korea who provide care for children with disabilities may be even more vulnerable to the effects of stressors (Park, 2012). Therefore, it is important to understand the factors related to psychosocial outcomes among caregivers in South Korea, especially mothers, of transition-age youth with IDD.

The Double ABCX Model of Family Adjustment and Adaptation

When attempting to consider all the relevant factors involved in psychosocial outcomes for families with a transition-age youth with IDD, the Double ABCX model of family adjustment and adaptation (McCubbin & Patterson, 1983) seems especially appropriate. …

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