Caregiver Burden in Caring for Children with Cerebral Palsy: A Concept Analysis

Purpose: To explore the concept of caregiver burden and clarify its meaning in caring for children with cerebral palsy. Methodology The concept analysis used Walker and Avant's approach to develop a working definition of caregiver burden. Five electronic databases: Embase, Ovid Medline, Web of Science, Cochrane Library, and CINAHL were searched for articles written in English. Quantitative and qualitative studies related to caregiver burden in caring for children with cerebral palsy were included. Findings: Of the 2986 articles yielded by the search, 24 articles were included in the analysis. The identified defining attributes of caregiver burden are heavy load, long-term care due to developmental disability, subjective experience, and multidimensional/complex phenomena. Case, borderline, and contrary models are provided to demonstrate caregiver burden in caring for children with cerebral palsy. Antecedents include the severity of the child’s disability, lack of support, financial constraints, and confinement (restricted participation in social activities). Caregivers face consequences of caregiver burden such as lifestyle disruption, family function decline, decreased caregiver quality of life, and reduced care provision. Unique Contribution to Theory, Policy, and Practice: The study explores the emotional, physical, social, and financial aspects of caregiver burden in children with cerebral palsy, highlighting its impact on various cultural contexts influencing theoretical caregiving stress and adaptation models. The analysis provides evidence for the need for inclusive policy changes that address caregiver burden, such as increased respite care, financial support, and specialized health services. It recommends that the healthcare sector can reduce caregiver burden by identifying and establishing supportive structures early, promoting caregivers' health, and improving the quality of care.