Evaluating Burden of Care for Caregivers of Children with Intestinal Failure on Long-term Parenteral Nutrition

Abstract

The objective of this thesis was to evaluate burden of care for caregivers of children with intestinal failure (IF) on long-term parenteral nutrition (PN). This was completed with two comprehensive reviews of IF and caregiver burden and three projects that add knowledge to the current literature. Pediatric IF is a complicated chronic medical condition. There have been considerable advancements over the past two decades resulting in improved survival rates. The majority of care after their primary hospitalization takes place in the home setting provided by family caregivers. There are significant gaps in the understanding of the impact of this care on caregivers in order to identify opportunities for interventions and supports. The first project qualitatively described the experiences of caregivers of children with IF describing common themes identified related to caregiving being a 24/7 commitment, facing the constant risk of death, chronic illness creating difficult feelings and emotions and adapting to chronic illness as a family. Caregivers also quantified the volume of care being provided to their children within the home setting. The second project evaluated stress, anxiety, depression, and health-related quality of life (HRQoL) in caregivers of children with IF compared to caregivers of healthy children. The results demonstrated that IF caregivers had increased levels of stress, anxiety, and depression and lower HRQoL. The final project evaluated sleep in caregivers of children with IF compared to caregivers of healthy children. This study demonstrated caregivers of children with IF achieve significantly less sleep than their peers. In summary, there are multifaceted impacts of providing a significant volume of care for caregivers of children with IF. Caregivers provide a tremendous amount of care to ensure their children’s health remains optimized and highlights the need for ongoing advocacy to ensure adequate supports for respite and mental health supports are put into place.