Parents' experiences of waiting for their child's transplant: A focus on how healthcare providers can impact the waiting process.

Waiting for a child transplant is a form of suffering for parents, yet little research has explored how parents experience waiting and how healthcare providers can impact their waiting experiences. The purpose of this article is to investigate how parents experienced the process of waiting for their child's transplant with a specific focus on the impact of healthcare providers on parents' experience of waiting. Six parents from four different families participated in interviews and observations.

Examining emotional and behavioural trajectories in siblings of children with life-limiting conditions.

Background: Healthy siblings of children with life-limiting conditions often experience emotional and behavioural struggles over the course of the ill child's condition(s). Resources to support these siblings are limited due to a lack of understanding about their needs. Therefore, this study was designed to characterize the emotional and behavioural trajectories among siblings of children with progressive, life-limiting genetic, metabolic, or neurological conditions over a 12-month observation period.

The Home-Based Experiences of Palliative and Hospice Care for Children and Caregivers (EXPERIENCE) Measure: Evaluation of Psychometric Properties.

Context: Home-based pediatric palliative and hospice care (PPHC) supports the hundreds of thousands of children with serious illness and complex care needs and their families in the home setting. Considerable variation, however, exists in the provision and quality of home-based PPHC in the U.S.

Validation of Patient-Reported Outcome Measure in Pediatric CKD (PRO-Kid).

Key Points: PRO-Kid is a patient-reported outcome measure of the frequency and burden of symptoms. Higher PRO-Kid scores are associated with lower Pediatric Quality of Life Inventory scores.

Background: Measuring the burden of symptoms that matter most to children and adolescents with CKD is essential for optimizing patient-centered care.

Learning to Trust Yourself: Decision-Making Skills Among Parents of Children With Medical Complexity.

Context: Children with medical complexity have substantial medical needs and their caregivers must make many challenging decisions about their care. Caregivers often become more involved in decisions over time, but it is unclear what skills they develop that facilitate this engagement.

Objectives: To describe the skills that caregivers developed as they gained experience making medical decisions.