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

Publication date: Available online 25 October 2018

Source: Journal of Allergy and Clinical Immunology

Author(s): Jennie Yoo, Meghan C. Halley, E. Anne Lown, Veronica Yank, Katherine Ort, Morton J. Cowan, Morna J. Dorsey, Heather Smith, Sumathi Iyengar, Christopher Scalchunes, Christina Mangurian

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 healthcare 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 via on-line and electronic mailing lists of rare disease consortiums and foundations. Caregivers were invited to participate in an on-line survey assessing sociodemographic variables, child's medical characteristics, psychosocial support use, and WHO-5 Well-Being Index. Open-ended questions about healthcare system improvements were included. Descriptive statistics and linear multivariate regression analyses were conducted. A modified content analysis method was used to code responses and identify emergent themes.

Results

Among the 80 caregiver respondents, caregivers had a median age of 34 years (range 23-62 years), were predominantly female, white, and married with male children diagnosed with SCID. In the adjusted regression model, lower caregiver well-being was significantly associated with lower household income and medical complications. Challenges during HCT include maintaining relationships with partners and the child's healthy sibling(s), managing self-care, and coping with feelings of uncertainty. Caregivers suggested several organizational-level solutions to enhance psychosocial support, including respite services, on-line connections to other PID caregivers, and bedside mental health services.

Conclusions

Certain high-risk sub-populations of caregivers may need more targeted psychosocial support to reduce long-term impact of the HCT experience upon their wellbeing. Caregivers suggested several organizational-level solutions for provision of this support.

https://ift.tt/2PsKYEE