Understanding the Experiences of Youth Living With Sickle Cell Disease

Abstract

A Photovoice pilot was conducted with a sample of 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 for use 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, coping with the disease, and the importance of family and support.

Sickle cell anaemia and the experiences of young people living with the condition

“…All used qualitative methods to capture the views and experiences of the participants. Erskine (2011), Valenzuela et al (2013), Dyson et al (2012) and Stegenga & Burks (2013) all took place in the last five years. Conversely Atkin & Ahmad (2001) and Thomas & Taylor (2002) studies occurred in the last 15 years.…”

“…All of the studies examined used a qualitative approach, although differed in how they collected the data. Stegenga & Burks (2013) & Valenzuela et al (2013 used photovoice which "is often valued for its ability to uncover rich descriptive information" (Catalani & Minkler, 2010;pp.441). Erskine (2011) used Interpretative phenomenological analysis (IPA) which uses a psychological focus to help explore participant's experiences, understandings, perceptions and views (Brocki & Wearden, 2006).…”

“…However, the level of support needed and achieved does vary according to the age, stage of development and the wider support network. Valenzuela et al (2013) emphasised the importance of support and relationships, 18 of the 80 photographs taken were a representative of support of others.…”

Genetics’ Influence on Patient Experiences with a Rare Chronic Disorder

“…Facilitate research to identify and describe 21 patient-centered priorities in advancing intervention development responding to the patient community's psychosocial needs…”

Using Photovoice as a Community-Based Participatory Research Method to Identify Perceived Risk and Protective Factors for Depression in Rural Adolescents

“…While there is a substantial body of literature that has used Photovoice with youth around the globe [15,23,26,[36][37][38][39][40][41][42][43][44], there is a lack of studies that specifically use a social ecological model with the method. In addition, there is a lack of Photovoice studies that address mental health issues with rural youth, in particular those who are diagnosed with depression.…”