Sickle cell disease related fatigue in adolescence: What do gender and the body have to do with it?

SCD是全球最常见的遗传性血液疾病，其主要特征是疲劳和急性和剧烈疼痛（Piel et al., 2013）。与疼痛不同，疲劳在研究和护理中没有得到充分认识。这种缺乏关注可能是因为人们认为疲劳是这种疾病不可避免的、无处不在的后果，对此无能为力，因此SCD患者必须忍受。因此，SCD患者可能不愿意在临床咨询中提到疲劳，而卫生专业人员可能没有充分重视疲劳，只关注SCD更明显的方面（while & Mullen, 2004）。患有SCD的青少年可能特别容易受到疲劳的影响，因为他们的活动需求和期望增加，对自主和独立的渴望增加，对教育、事业、亲密关系和组建家庭的追求增加（Ameringer et al., 2014）。因此，忽视疲劳意味着忽视了青少年日常经历的一个重要方面，即他们如何得到照顾者和家庭的支持和照顾。为了了解青少年SCD的疲劳体验，我的博士工作采用Charmaz（2014）的建构主义扎根理论方法，基于加纳青少年SCD的经验，构建了一个理论来解释青少年SCD相关的疲劳。研究结果表明，疲劳是青少年SCD患者日常生活中最具限制性和破坏性的方面。疲劳无所不在，对日常功能、疼痛体验、情绪健康、自我/社会发展和未来前景都有显著的负面影响。疲劳导致耻辱、社会孤立和排斥。研究发现，加纳的社会文化价值观和期望对这种经历有重要影响。该奖学金将侧重于四个目标。(1)我的博士数据表明，疲劳体验中的性别差异需要社会学分析来充分梳理其社会学含义，从而更广泛地为健康与疾病社会学和身体社会学做出贡献。这将增强证据的深度及其社会学贡献。(2)在加纳与关注SCD的第三部门组织、医疗保健提供者和患有SCD的青少年的家庭接触。在加纳的参与活动是奖学金的组成部分。这些活动将支持传播研究成果；确保加纳主要利益相关者对SCD疲劳的认识和态度发生变化。(3)在《社会科学与医学》和《健康与疾病社会学》上发表了两篇基于社会学分析的同行评议文章，在《BMC Research Involvement and Engagement》上发表了一篇基于加纳参与活动的论文。将寻求机会在有关会议上介绍新知识。(4)提出一份资助建议，以巩固并继续我在这个领域的工作。因此，该奖学金将为我提供充足的机会，从事我在博士期间无法关注的关键活动，即关注我的博士数据中有关性别和身体的方面，以及在加纳实现影响。它也将提供机会来进一步提高我目前的专业技能/能力。计划的期刊论文将有助于建立出版记录，并提高我的学术写作技能。传播/影响活动将为不同背景和学科的学术和非学术观众提供网络空间，并提高我的沟通技巧。该奖学金还将使我能够制定一项资助提案，以继续我在该领域的工作。因此，为奖学金计划的活动将巩固我的研究技能，有助于我的专业发展，促进我向一个成熟的早期职业研究员过渡，并为我在医学社会学的学术生涯提供跳板。

SCD is the commonest inherited blood disorder globally, which is characterised predominantly by fatigue and acute and severe pains (Piel et al., 2013). Unlike pain, fatigue is under-recognised in research and care. This lack of attention is perhaps due to the perception that fatigue is an inevitable and ubiquitous consequence of the condition, about which nothing can be done and therefore must be endured by those living with SCD. Thus, individuals with SCD may be reluctant to raise fatigue during clinical consultations, while health professionals may give insufficient priority to fatigue, by focusing on the more obvious aspects of SCD (While & Mullen, 2004). Adolescents with SCD may be particularly vulnerable to the effects of fatigue due to the increased activity demands and expectations associated with increasing desire for autonomy and independence, and pursuit of education, careers, intimate relationships and starting a family (Ameringer et al., 2014). Therefore, ignoring fatigue means a significant aspect of adolescents' daily experience is overlooked in how they are supported and cared for by care providers and families. To understand how adolescents with SCD experience fatigue, my doctoral work adopted the constructivist grounded theory approach by Charmaz (2014) to construct a theory, based on the experiences of adolescents with SCD in Ghana to explain SCD-related fatigue in adolescence. The findings showed that fatigue was the most restrictive and disruptive aspect of the daily lives of adolescents with SCD. Fatigue was omnipresent and had a significant negative impact on daily functioning, pain experiences, emotional well-being, self/social development, and future outlook. Fatigue resulted in stigma, social isolation and exclusion. The study found sociocultural values and expectations within the Ghanaian context to contribute significantly to the experiences.The fellowship will focus on four objectives. (1) My PhD data suggests gender differences in the fatigue experiences that require sociological analysis to fully tease out the sociological implications to contribute to the sociology of health and illness more widely and the sociology of the body. This will enhance the depth of the evidence and its sociological contributions. (2) Engage with SCD-focused third sector organisations, healthcare providers and families of adolescents with SCD in Ghana. The engagement activities in Ghana is integral to the fellowship. The activities will support communicating research findings; and ensuring knowledge and attitudinal change among key stakeholders in Ghana, regarding fatigue in SCD. (3) Two peer-reviewed articles in Social Science and Medicine and Sociology of Health and Illness based on the sociological analysis, plus a paper in BMC Research Involvement and Engagement based on the engagement activities in Ghana. Opportunities will be sought to present the new knowledge at relevant conferences. (4) Develop a funding proposal to build on and continue my work in this field.The fellowship will thus provide ample opportunities to undertake key activities I could not focus on during my PhD, i.e. focus on aspects of my PhD data regarding gender and the body, and on achieving impact in Ghana. It will also provide opportunity to further my current professional skills/competencies. Planned journal papers will support the creation of a publication track record and improve my academic writing skills. Dissemination/impact events will provide spaces to network and enhance my communication skills for both academic and non-academic audiences across different contexts and disciplines. The fellowship will also enable me to develop a funding proposal to continue my work in the field. The activities planned for the fellowship will therefore consolidate my research skills, contribute to my professional development, facilitate my transition to an established early career researcher, and springboard my academic career in medical sociology.