The Quality of Life of Caregivers of Children with Chronic Conditions

This dissertation is comprised of two papers that address the quality of life (QOL) of caregivers of children with chronic conditions. The first paper is a literature review that critically evaluates study findings pertaining to the quality of life of primary caregivers of children with chronic conditions to determine current findings and gaps. Using a systematic approach, findings were categorized, organized and synthesized using the four domains of the Ferrans Conceptual Model for Quality of Life (QOL). This review showed that the time commitment associated with caring for a child who has a chronic condition affects the reported QOL of the primary caregivers. The QOL of the caregiver as it relates to health, psychological well-being, social networks and support, and the family dynamic can be negatively impacted when a significant amount of time is being committed to the care of the child with a chronic condition. The noted outcomes of QOL among caregivers can vary based on the severity of the child’s condition and the caregiver’s perceived QOL. It was concluded that more studies on quality of life in childhood chronic illness would add to the body of knowledge and hopefully increase the awareness of these caregivers’ needs for clinicians who care for these children. The second paper is a mixed methods study that assessed the relationship between the caregiver’s QOL, the child’s functional status and the well-being of the family unit. Results of the Ferrans and Powers Quality of Life Index Generic Version (QLI), the Functional Status Measure II and the Family APGAR were analyzed. The caregivers’ overall QOL scores were divided into upper and lower quartiles which facilitated the inspection of the qualitative data collected from the caregiver. This analysis was conducted to better understand the aspects of the caregiver’s own life and daily routine that affected their self-reported QOL. This study shows that the reported functioning of a child with a chronic condition and the well-being of the family unit were directly related to their QOL. The quantitative analysis showed that the measures of QOL, child’s functional status and family well-being were strongly positively correlated. The overall QOL mean scores of the upper and lower quartile were significantly different. QOL was impacted by financial strains within the family as a result of the child’s condition, support within the family unit and psychological stressors of the genetic nature of the child’s condition.