Biographical accounts of the impact of fatigue in young people with sickle cell disease.
Biographical accounts of the impact of fatigue in young people with sickle cell disease.
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DOI：
10.1111/1467-9566.13477
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发表时间：
2022-06
影响因子：
2.9
通讯作者：
Pilnick, Alison
中科院分区：
文献类型：
--
作者：
Poku, Brenda Agyeiwaa;Pilnick, Alison
患有镰状细胞病 (SCD) 的儿童和青少年 (CYP) 在慢性病的传记和社会学争论中是一个“缺失的声音”，这意味着我们对该疾病对 CYP 造成的社会后果知之甚少。本文探讨了疲劳（一种常见症状）对于患有 SCD 的青少年的意义。通过分析对加纳 12-17 岁青少年的 24 次深度访谈，我们利用 Bury（1988）提出的“作为意义的意义”和“作为结果的意义”之间的区别来研究疲劳的传记方面。我们认为，“传记破坏”和“正常疾病”的概念不容易适应 CYP 与 SCD 等先天性慢性疾病的经历，因为它们的（未）破坏感和正常性/连续性是相对于对年轻人的规范期望而言的。在传记转变点，从出生起出现的疾病/症状可能会演变、转变并被体验为“新的”、“不同的”或“非正常的”。它们可能会变得具有限制性，而不是持续性或破坏性。这些经历主要受到规范的传记期望和对身份肯定的追求的影响。我们认为，传记限制、传记制定、传记放弃和传记重构是理解 CYP 患有 SCD 的经历的更相关概念。
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.
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