Supporting caregivers during hematopoietic cell transplantation for children with primary immunodeficiency disorders.

ABSTRACT:

Background

Caregivers of children with primary immunodeficiency disorders (PIDs) experience significant psychological distress during their child's hematopoietic cell transplantation (HCT) process.

Objectives

This study aims to understand caregiver challenges and identify areas for health care system-level improvements to enhance caregiver well-being.

Methods

In this mixed-methods study caregivers of children with PIDs were contacted in August to November 2017 through online and electronic mailing lists of rare disease consortiums and foundations. Caregivers were invited to participate in an online survey assessing sociodemographic variables, the child's medical characteristics, psychosocial support use, and the World Health Organization-5 Well-Being Index. Open-ended

SUBMITTER: Yoo J 

PROVIDER: S-EPMC6559373 | biostudies-literature | 2019 Jun

REPOSITORIES: biostudies-literature