The Unseen Burden of Caregiving of Children with Special or Complex Health Needs: A Scoping Review
Faculty Mentor
Bettye Apenteng
Location
Russell Union Ballroom
Type of Research
Completed
Session Format
Poster Presentation
College
Jiann-Ping Hsu College of Public Health
Department
Department of Community Health
Abstract
Objective: This scoping literature review examines the relationship between caregiving for children with chronic, special, or complex healthcare needs and caregivers’ quality of life (QoL).
Methods: The research was guided by Arksey and O’Malley’s (2005) scoping review framework and systematically mapped evidence published between 2016 and 2026. The central research question examined how caregiving responsibilities for children with special healthcare needs affect the psychological, physical, and social well-being of caregivers, including immediate and extended family members. Studies focusing on adult care recipients or non-caregiver populations were excluded. After screening an initial pool of 1,560 references, 13 relevant studies were identified and charted in accordance with PRISMA guidelines to ensure transparency in study selection and data extraction.
Results: A consistent and significant negative association between caregiver burden and quality of life emerged across the literature. Caregivers—particularly mothers—of children with chronic conditions, such as autism spectrum disorder (ASD), Cerebral Palsy (CP), Epilepsy, Attention-Deficit/Hyperactivity Disorder (ADHD), intellectual disabilities, and mixed developmental disabilities reported diminished physical health, emotional well-being, and social functioning. Increased caregiving demands were associated with financial strain, limited time for self-care, social isolation, persistent emotional guilt, higher levels of stress, anxiety, depression, and burnout. The severity and type of the child’s diagnosis were the most influential factors for caregiver outcomes.
Several protective and moderating factors, including child self-efficacy and independence, were associated with lower perceived caregiver burden. Additionally, parental self-esteem, coping strategies, and social support systems played a significant role in diffusing stress. However, as caregiver burden increased, coping ability often declined further, exacerbating declines in QoL.
Conclusion: The review highlights the urgent need for targeted interventions to reduce caregiver stress and improve well-being. Interventions that enhance caregiver coping skills, promote resilience, and support child independence may mitigate burden and improve overall family quality of life.
Program Description
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Start Date
4-23-2026 10:00 AM
End Date
4-23-2026 12:00 PM
Recommended Citation
Griffin, Jourdyn; Puobebe, Carolyn; Appenteng, Bettye; and Opoku, Samuel, "The Unseen Burden of Caregiving of Children with Special or Complex Health Needs: A Scoping Review" (2026). GS4 Student Scholars Symposium. 60.
https://digitalcommons.georgiasouthern.edu/research_symposium/2026/2026/60
The Unseen Burden of Caregiving of Children with Special or Complex Health Needs: A Scoping Review
Russell Union Ballroom
Objective: This scoping literature review examines the relationship between caregiving for children with chronic, special, or complex healthcare needs and caregivers’ quality of life (QoL).
Methods: The research was guided by Arksey and O’Malley’s (2005) scoping review framework and systematically mapped evidence published between 2016 and 2026. The central research question examined how caregiving responsibilities for children with special healthcare needs affect the psychological, physical, and social well-being of caregivers, including immediate and extended family members. Studies focusing on adult care recipients or non-caregiver populations were excluded. After screening an initial pool of 1,560 references, 13 relevant studies were identified and charted in accordance with PRISMA guidelines to ensure transparency in study selection and data extraction.
Results: A consistent and significant negative association between caregiver burden and quality of life emerged across the literature. Caregivers—particularly mothers—of children with chronic conditions, such as autism spectrum disorder (ASD), Cerebral Palsy (CP), Epilepsy, Attention-Deficit/Hyperactivity Disorder (ADHD), intellectual disabilities, and mixed developmental disabilities reported diminished physical health, emotional well-being, and social functioning. Increased caregiving demands were associated with financial strain, limited time for self-care, social isolation, persistent emotional guilt, higher levels of stress, anxiety, depression, and burnout. The severity and type of the child’s diagnosis were the most influential factors for caregiver outcomes.
Several protective and moderating factors, including child self-efficacy and independence, were associated with lower perceived caregiver burden. Additionally, parental self-esteem, coping strategies, and social support systems played a significant role in diffusing stress. However, as caregiver burden increased, coping ability often declined further, exacerbating declines in QoL.
Conclusion: The review highlights the urgent need for targeted interventions to reduce caregiver stress and improve well-being. Interventions that enhance caregiver coping skills, promote resilience, and support child independence may mitigate burden and improve overall family quality of life.
