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

Abstract

Children and young people (CYP) with sickle cell disease (SCD) are a 'missing voice' in the debate on biography and sociology of chronic illness, meaning we know little about the social consequences of the illness for CYP. This paper examines the meaning of fatigue (a common symptom) for adolescents with SCD. Analysing 24 in‐depth interviews with adolescents aged 12–17 years in Ghana, we draw on the distinction proposed by Bury (1988) between 'meanings as significance' and 'meanings as consequence' to examine biographical aspects of fatigue. We argue that concepts of 'biographical disruption' and 'normal illness' do not easily accommodate the experience of CYP with congenital chronic illnesses like SCD, as their sense of (un)disruption and normality/continuity is contextualised relative to normative expectations about what it is to be a young person. At biographical transition points, illness/symptoms present from birth may evolve, shift and become experienced as 'new', 'different', or 'non‐normal'. They may become restrictive rather than continuous or disruptive. These experiences are influenced primarily by normative biographical expectations and the pursuit of identity affirmations. We propose that biographical restriction, biographical enactment, biographical abandonment and biographical reframing are more relevant concepts for understanding the experiences of CYP living with SCD.

Research knowledge transfer to improve the care and support of adolescents with sickle cell disease in Ghana

“…These included (1) fatigue having a significant negative impact on the young people's everyday life and representing the most restrictive and disruptive aspect of growing up with SCD 16 ; (2) fatigue representing a socially undesirable feature that was stigmatizing and, therefore, a significant threat to 'normalcy'; (3) fatigue having significant actual and potential consequences for the adolescents' biographies in adolescence and adulthood 18 ; (4) gender differences in fatigue experience and parental care and support 19 ; (5) absence of fatigue-related support and care from healthcare professionals 18 and (6) despite the established biobehavioural model of SCD-related fatigue, 20 there were salient social factors that influenced the symptom experience among young people. 16,18,19 Despite the chronicity and biopsychosocial significance of SCDrelated fatigue, 19,[21][22][23][24][25][26] it tends to be an 'orphaned' symptom scarcely prioritized in research and clinical care compared to SCD-related pain. 20,22,26 This lack of attention has been associated with the nihilistic perception that fatigue is an inevitable consequence of the condition, about which nothing can be done and therefore must be endured by those living with SCD.…”

“… 17 The study findings highlighted several critical issues related to the meaning and significance of fatigue for adolescents with SCD in Ghana and the care and support they received. These included (1) fatigue having a significant negative impact on the young people's everyday life and representing the most restrictive and disruptive aspect of growing up with SCD 16 ; (2) fatigue representing a socially undesirable feature that was stigmatizing and, therefore, a significant threat to ‘normalcy’; (3) fatigue having significant actual and potential consequences for the adolescents' biographies in adolescence and adulthood 18 ; (4) gender differences in fatigue experience and parental care and support 19 ; (5) absence of fatigue‐related support and care from healthcare professionals 18 and (6) despite the established biobehavioural model of SCD‐related fatigue, 20 there were salient social factors that influenced the symptom experience among young people. 16 , 18 , 19…”

“…For example, the original study revealed that the young people felt their complaints of fatigue were dismissed by others (including parents and health professionals) and treated as illegitimate. While the adolescents in the study associated these negative social reactions with the invisibility of the symptom, their ‘normative appearance’ and young age, 16 , 18 the workshop participants offered several alternate explanations for these observations. These included a lack of understanding of the extent of fatigue's impact on young people with SCD, which some workshop participants associated with the commonality of the experience of tiredness described as ‘fatigue’ in the general population; lack of recognition of the symptom in clinical treatment guidelines due to the absence of evidence‐based SCD‐related fatigue‐specific assessment tools, treatment/support plans and interventions and pragmatic decisions to focus limited resources on acute life‐threatening and objective manifestations of SCD‐like pain.…”

Self‐management interventions for children and young people with sickle cell disease: A systematic review

“…66 In addition to previous research on the effectiveness of self-management for CYP with chronic illnesses, 66 in SCD self-management practices in these settings. 9,11,[13][14][15] The lack of accommodation for SCD self-management practices in the home, school and workplace has been highlighted, including how school policies and practices contradict self-management. 9,11,[13][14][15] At the same time, self-management practices may be (dis)regarded as interference and perceived as disruptive and stigmatizing by others and CYP themselves.…”

“…Future interventions should, therefore, include components that facilitate peer and significant adult support. The involvement of peers, families, care providers and teachers is particularly important because CYP with SCD have been found to experience significant stigma in relation to their illness management, even from families, care providers and teachers due to their illness and race/ethnicity 9,11,72,73.…”