Faculty Articles

Understanding the Experiences of Youth Living With Sickle Cell Disease: A Photovoice Pilot

Document Type

Article

Publication Date

4-2013

Publication Title

Family & Community Health

Volume

36

Issue/Number

2

First Page

97

ISSN

0160-6379

Last Page

108

Abstract/Excerpt

A Photovoice pilot was conducted with youth living with sickle cell disease (SCD), in order to further understand their lived experience and examine the acceptability, feasibility, and utility of this method in this population. SCD is an inherited genetic condition whose primary symptom is severe pain. Youth were able to reflect on their experiences with SCD using Photovoice and the adapted SHOWeD method. Parents and youth found Photovoice to be valuable for children and adolescents with SCD. Emerging themes included the impact of SCD, the importance of everyday activities and interests, and the importance of family and support.

DOI

10.1097/FCH.0b013e318282b2f2

Peer Reviewed

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