Official Title: The Work of Care for Children and Young Adults with Complex Chronic Conditions: A Synthetic Systematic Review
Research Lead: Chris Feudtner, MD, PhD, MPH
Supported By: The Children's Hospital of Philadelphia Pediatric Advanced Care Team
Background
For children and young adults living with complex chronic conditions, medical advances continue to reduce the risk of illness and death. These advances, however, also create new challenges for parents caring for these children. Treatment plans for families need to take into consideration the complexity and work load of the care for children and young adults with complex chronic conditions.
Aims
- Develop a conceptual model that incorporates the diverse components of the work of care by parents of children with complex chronic conditions.
- Propose clear mechanisms specifying how changes in various components and mechanisms of the work of care affect potential health outcomes for children and their families.
- Advance efforts to understand and better manage the work of care associated with CCCs and thereby improve outcomes for children and their families.
Methods
Study Design: Systematic literature review
Inclusion/Exclusion Criteria: Intervention trials, case-control and cohort studies (both cross-sectional and longitudinal), case studies, and interviews were included. Studies varied in sample size and were from many different countries. All prior literature reviews were also included. All articles that focus on non-parent caregivers, such as nurses and social workers, and those on adult caregivers of aging parents were excluded.
Evaluation: Articles were assessed in randomly selected order from the database of 625 articles; this process was repeated until we reached thematic saturation (117 articles); all subsequent articles were assigned to the created codes. Articles were chosen for inclusion in the manuscript based on their relevance. Additional studies are listed by thematic code in the tables.
