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Psychosocial services for primary immunodeficiency disorder families during hematopoietic cell transplantation: A descriptive study

Published online by Cambridge University Press:  18 September 2018

Christina Mangurian ,
Christopher Scalchunes ,
Jennie Yoo ,
Brent Logan ,
Tiffany Henderson ,
Sumathi Iyengar ,
Heather Smith  and
Morton J. Cowan
Christina Mangurian*
Affiliation:
University of California San Francisco Department of Psychiatry, San Francisco, CA
Christopher Scalchunes
Affiliation:
Immune Deficiency Foundation, Towson, MD
Jennie Yoo
Affiliation:
University of California San Francisco Department of Psychiatry, San Francisco, CA
Brent Logan
Affiliation:
Medical College of Wisconsin, Milwaukee, WI
Tiffany Henderson
Affiliation:
University of California San Francisco Department of Psychiatry, San Francisco, CA
Sumathi Iyengar
Affiliation:
Wiskott-Aldrich Foundation, Smyma, GA
Heather Smith
Affiliation:
SCID, Angels for Life Foundation, Lakeland, FL
Morton J. Cowan
Affiliation:
Pediatric Allergy, Immunology, Blood and Marrow Transplant Division, University of California San Francisco Benioff Children's Hospital, San Francisco, CA
*
Author for Correspondence: Christina Mangurian, M.D., M.A.S., UCSF Department of Psychiatry Weill Institute for Neurosciences, San Francisco General Hospital, 1001 Portero Ave, Suite 7M, San Francisco, CA 94110. E-mail: christina.mangurian@ucsf.edu
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Abstract

Objective

Caregivers for patients undergoing hematopoietic cell transplantation (HCT) are susceptible to significant psychosocial distress. This cross-sectional study aimed to describe psychosocial support services offered and used by caregivers of pediatric primary immune deficiency (PID) during HCT at 35 hospitals across North America.

Method

Caregivers of pediatric patients with PID were recruited by e-mail to participate in an anonymous 140-question survey instrument between April and May 2016 (N = 171).

Result

Of those meeting inclusion criteria (53%), family counseling services were only offered to fewer than half of caregivers (42%). Of the survey participants not offered counseling services, the majority desired family counseling (70%) and sibling counseling (73%). That said, when offered counseling, utilization rates were low, with 22% of caregivers using family counseling and none using sibling counseling.

Significance of results

These results indicate the need to offer and tailor counseling services for families throughout the HCT process. Further research should focus on reducing barriers to utilization of counseling services such as offering bedside counseling services, online modalities, and/or financial assistance.

Keywords

Hematopoietic cell transplantation (HCT)Psychosocial servicesCaregiversCounselingPrimary immune deficiency (PID)
Type
Original Article
Information
Palliative & Supportive Care , Volume 17 , Issue 4 , August 2019 , pp. 409 - 414
Copyright
Copyright © Cambridge University Press 2018 

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