Caregivers of Children with Developmental Disabilities: Exploring Perceptions of Health-Promoting Self-Care
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Caregivers of Children with Developmental Disabilities: Exploring Perceptions of Health-Promoting Self-Care Sandra M. Chafouleas 1 & Emily A. Iovino 1
& Taylor
A. Koriakin 1
# Springer Science+Business Media, LLC, part of Springer Nature 2020
Abstract Primary caregivers of children with developmental disabilities encounter unique challenges that can affect their overall health and well-being. This pilot study sought to explore the definitions of and experiences with health-promoting self-care in primary caregivers of children with developmental disabilities. Thirteen primary caregivers of children with developmental disabilities ranging in age from 3 to 21 years participated in a semi-structured interview to explore their health-promoting self-care, their current and future goals for health and wellness, and their interest in use of technology to facilitate self-care. Across participant responses, 10 themes emerged overall. The following number of themes emerged within each general topic area: general assessment of health and well-being (n = 2); personal assessment of self-care behaviors (n = 3); defining features of health and well-being categories (n = 2); top endorsed healthpromoting needs (n = 1); and technologies to support self-care (n = 2). Findings demonstrated commonalities across the experiences of caregivers in some domains. However, caregivers also endorsed differing barriers and needs for support across areas affecting personal health and well-being. Results provide support for further investigation into the utility of interventions to promote caregiver self-care for their health and well-being, particularly in the area of social support. Keywords Caregivers . Health-promotion . Self-care . Developmental disabilities
Over the past decade, prevalence rates of developmental disabilities (DD) in children increased by more than 17%, with substantially greater increases for specific diagnoses (e.g. autism – 289.5% increase; Boyle et al. 2011). DD are defined as “heterogeneous and lifelong disorders that are often characterized by problems related to the * Sandra M. Chafouleas [email protected]
1
Department of Educational Psychology, Neag School of Education, University of Connecticut, 249 Glenbrook Rd. (U-3064), Storrs, CT 06269, USA
Journal of Developmental and Physical Disabilities
functioning of the brain or senses and include genetic disorders that affect cognition, behavior, and multiple body systems,” (Zablotsky et al. 2015). Examples of specific conditions include attention deficit hyperactivity disorder (ADHD), autism spectrum disorder (ASD), cerebral palsy (CP), and intellectual disability (ID) (National Center on Birth Defects and Developmental Disabilities 2017). Individuals with DD require care that ranges from minor, intermittent help to ongoing, intensive assistance throughout the life span. Family members, particularly mothers, often serve as informal caregivers, defined as unpaid individuals who assist care recipients with activities of daily living and/or medical tasks (
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