Ser adolescente apesar das restrições e da discriminação impostas pela doença falciforme

Abstract

Ser adolescente apesar das restrições e da discriminação impostas pela doença falciformeBeing an adolescent despite the restrictions and discrimination imposed by sickle cell disease Ser adolescente pese a las restricciones y a la discriminación impuestas por la enfermedad de células falciformesLuciano Marques dos Santos 1 https://orcid.

Growing beyond sickle cell disease: A metasynthesis of children, adolescents, and young adult experiences living with sickle cell disease

“…One informant who used frequent medication to relieve her pain commented that she was “living on morphine” (Atoui et al, 2015, p. 428). Another adolescent described living with pain: “‥if I could control it, that's fine, but it hurts, it hurts, it feels like your arm is going to crack, that something is going to happen on the outside, your bones look like they are swelling, your arms look like they are broken, it hurts a lot!” (Marques dos Santos et al, 2022, p. 5).…”

“…Most participants were of African or Caribbean descent. Methodologies varied across studies and included grounded theory (Marques dos Santos et al, 2022; Valenzuela et al, 2013), qualitative content and thematic analysis (Atoui et al, 2015; Forrester et al, 2015; Lauderdale, 2003; Matthie et al, 2016; Stegenga & Burks, 2013; Thomas & Taylor, 2002; While & Mullen, 2004), interpretive phenomenology (Erskine, 2012; Okumdi & Victor, 2013) and Heideggerian hermeneutics (Shabo, 1998). Most of the data were gathered using semi‐structured or unstructured interviews (Atoui et al, 2015; Erskine, 2012; Forrester et al, 2015; Lauderdale, 2003; Marques dos Santos et al, 2022; Matthie et al, 2016; Okumdi & Victor, 2013; Shabo, 1998; While & Mullen, 2004) while one study used a focus group (Thomas & Taylor, 2002) and two studies utilized photo voice for data collection (Stegenga & Burks, 2013; Valenzuela et al, 2013).…”

“…Fatigue was also a prevalent complaint in teenagers with SCD due to the physical, mental, and emotional demands of adolescence. Needing to rest, feeling extremely tired, not being able to keep up, or having to limit activities because of fatigue were all commonly voiced (Atoui et al, 2015; Marques dos Santos et al, 2022; Shabo, 1998; Thomas & Taylor, 2002; While & Mullen, 2004).…”

“…They often look different, have frequent school and work absences, and may be unable to participate in sport activities like their peers. Children, adolescents and young adults living with SCD described the importance of activities that made them feel normal (Marques dos Santos et al, 2022; Valenzuela et al, 2013). Some adolescents dealt with the desire to feel normal by purposively separating themselves from activities because they felt envious of their peers who were able to participate freely (Atoui et al, 2015).…”

“…I didn't tell […] I'm ashamed […] I had a girlfriend and never told her either, because I was ashamed, because it's a bad disease […] that has no cure […] so I didn't want to tell. (Marques dos Santos et al, 2022; p. 6)…”