“Body as a Machine”: How Adolescents With Sickle Cell Disease Construct Their Fatigue Experiences

Abstract

Research exploring illness experiences of young people with sickle cell disease (SCD) has, to date, ignored fatigue, despite the distinctive anemic nature of SCD. To examine adolescents with SCD fatigue experiences, we conducted narrative and picture-elicitation interviews with 24 adolescents in Ghana. A grounded theory, “body as a machine,” was constructed from the narratives. Fatigue represented the most restrictive and disruptive aspect of growing up with SCD. Its meaning and significance laid in what it symbolized. Fatigue represented a socially undesirable feature that was stigmatizing, due to the expectations of high physicality in adolescence. Fatigue was therefore a major threat to “normalcy.” The social significance of the physical body and its capacities shaped the adolescents’ fatigue experiences. Managing fatigue to construct/maintain socially acceptable identities dominated the adolescents’ lives. Consequently, there is a need for a recognition of the significance of fatigue to adequately support young people growing up with SCD.

Stigma Associated With Sickle Cell Disease in Kumasi, Ghana

“…In another study that focused on religious and cultural aspects of SCD to identify beliefs and attitudes relevant to public health interventions in Ghana, families/individuals with SCD, health care providers, religious leaders, and marriage counselors were consistent in describing the social norm that would-be couples who both have sickle cell S trait, let alone SCD, should be discouraged to proceed to marry in Ghanaian societies (Dennis-Antwi et al, 2018). Regarding bullying, in a study exploring the fatigue experiences of adolescents from two SCD clinics in Ghana, participants experienced stigma and discrimination when their fatigue became visible during physical activity (Poku et al, 2020). Deliberate social isolation and withdrawal was a strategy the adolescents commonly employed to manage information and impression to pass as "normal" (Poku et al, 2020).…”

“…Regarding bullying, in a study exploring the fatigue experiences of adolescents from two SCD clinics in Ghana, participants experienced stigma and discrimination when their fatigue became visible during physical activity (Poku et al, 2020). Deliberate social isolation and withdrawal was a strategy the adolescents commonly employed to manage information and impression to pass as "normal" (Poku et al, 2020).…”

Biographical accounts of the impact of fatigue in young people with sickle cell disease

“…In addition to this, fatigue was viewed as being bound up with their biological bodies. In both accounts, the young people allude to a limited body, which accounts for a reduced performance capacity and physicality (see Poku et al., 2020 for a detailed discussion on fatigue, SCD and the biological body).…”

“…This connection between fatigue, SCD and the biological body led to an understanding shared by almost all the participants that fatigue is a norm (Poku et al., 2020). They offered a medical theory of causation, which readily objectified their fatigue.…”

Évaluer la participation sociale de jeunes drépanocytaires. Recherche transdisciplinaire et adaptation des outils de recueil de données MHAVIE et MQE au contexte socioculturel de la Guadeloupe1

“…L'ensemble des dimensions sociodémographiques et identitaires en jeu, ainsi que les liens entre facteurs personnels et environnementaux, dans leurs effets sur la participation sociale, doivent être envisagés afin de saisir la complexité des situations de handicap que les drépanocytaires peuvent vivre. Si les environnements médicaux et familiaux sont souvent protecteurs, voire surprotecteurs, par contraste les environnements sociaux et culturels produisent une forte stigmatisation (Bougerol, 1994 ;Poku, Caress & Kirk, 2020 ; pour une revue systématique, se reporter à Bulgin et al, 2018). La diversité des environnements et leur articulation complexifient les actions à initier pour favoriser la participation des drépanocytaires dans une visée inclusive.…”