quality of life

Introduction: Acute Lymphoblastic Leukemia (ALL) is the most common childhood cancer. The leukemia affects not only the quality of life (QOL) of children but also their caregivers. This study aimed to identify the Quality of Life of parents of children with ALL and to find out the association between QOL of parents of children with ALL and the selected demographic variables.

Study Design: Mixed-method study.; Objectives: Describe caregiver perspectives on the rewards of parenting youth with spinal cord injury (SCI) and explore the relationships between rewards and child/caregiver demographic characteristics and child psychosocial outcomes.; Setting: Data collection occurred at three pediatric specialty hospitals within a single hospital system in the United States. 

Objective: There are many challenges to health, functioning, and participation for children with Down syndrome; yet, the quality-of-life (QOL) domains important for this group have never been clearly articulated. This study investigated parental observations to identify QOL domains in children with Down syndrome and determined whether domains differed between children and adolescents.

Objective: Patient education in children with rare chronic diseases like children's interstitial lung disease (chILD) remains a challenge.

Aims: To develop and evaluate a component-based educational program for individual counselling and to improve patients' and caregivers' self-efficacy and treatment satisfaction. Furthermore, to create chILD-specific educational material and assess physicians' satisfaction with the intervention as well as patients' health-related quality of life (HrQoL).

Aim: The aim of this review was to assess and synthesize current literature evaluating caregiver education and coping after children were discharged with a tracheostomy.; Background: Tracheostomy tube placement is a transformative event for the child who receives it and the family members who care for the child. As a result, it is imperative to provide caregivers a comprehensive and effective education on how to care for the tracheostomy and how to cope with a tracheostomy.

Background and purpose: Data on the disease burden of Duchenne Muscular Dystrophy are scarce in Hungary. The aim of this study was to assess patients' and their care-givers' health related quality of life and healthcare utilisations.

Methods: A cross sectional survey was performed as part of the European BURQOL-RD project. The EQ-5D-5L and Barthel Index questionnaires were applied, health care utilisations and patients' informal carers were surveyed.

Purpose: To examine test-retest reliability and construct validity of the Scandinavian version of the caregiver priorities and child health index of life with disabilities (CPCHILD) questionnaire for children with cerebral palsy (CP).

Objective: Pediatric drug-resistant epilepsy (DRE) is associated with poor health-related quality of life (HRQOL). Achieving seizure control, however, does not improve HRQOL in all children. This study sought to evaluate whether (1) baseline caregiver and family factors are associated with child HRQOL at 1-year follow-up over and above epilepsy characteristics, treatment, and seizure outcome; and (2) baseline family factors moderate the association between seizure outcome and child HRQOL at 1-year follow-up.