Adolescent boys with sickle cell disease: A qualitative study

Abstract

Sickle cell disease is a recessively inherited blood disorder associated primarily with black communities within the UK. This study investigated the experiences of adolescent boys with this condition. Eight participants were interviewed and their responses analysed using Interpretative Phenomenological Analysis. The emergent themes were watchfulness, holding onto normality, and connecting and disengaging. This analysis illustrated connections between physical symptoms, emotional responses and the development concerns of this participant group. The findings have implications for the nature and style of the delivery of health care services.

The Daily Experiences of Adolescents in Lebanon With Sickle Cell Disease

“…This finding is consistent with two earlier published qualitative studies in the United Kingdom (Erskine, 2012;Fuggle, Shand, Gill, & Davies, 1996). Fuggle and colleagues (1996) noted that adolescents tended to underreport their pain levels and dismiss the negative effects of SCD on their daily lives, which could be a coping mechanism in order to avoid blood tests and possible hospitalizations, whereas Erskine (2012) found that some boys claimed to miss medical appointments and not to take their recommended daily medication, which he surmised to be a wish to maintain an ordinary teenage life. We likewise conjecture that this dismissal and denial of the negative effects of their disease reflects a palpable yearning for normalcy among participants, or at least the need to create a normal image of themselves in front of others.…”

“…However, unlike in previous studies, none of the participants mentioned that he or she was bullied or marginalized (Erskine, 2012). Although this lack of bullying and marginalization may be a true reflection of what is happening in their lives, it may also be that participants are reluctant to disclose any bullying in order to feel accepted by peers.…”

“…These findings were not reported in studies with parental reports, which indicates that a child's lived reality may be different. However, a recent qualitative study with eight adolescent boys with SCD in London likewise noted that assertions of ''normality'' were common and seemed to counteract social disadvantages associated with disability (Erskine, 2012). Unlike in our study, a qualitative study with young Portuguese children with thalassemia found that children admitted to being powerless in relation to their illness (Mufti et al, 2015).…”

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

“…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). Atkin & Ahmad (2001) and Thomas & Taylor (2002) were the only studies conducted over a longer period of time.…”

“…All the studies, bar Erskine (2011), gave perspectives from both genders increasing the credibility. Erskine (2011) recruited male adolescents only. Polit & Beck (2013) found that gender bias was generally observed when females alone were sampled and in the Erskine (2011) study it was good to have the male perspective as it can be challenging to recruit males to such studies.…”