权益分类	功能权益	普通用户	{{item.name}}会员
{{category.name}}	{{benefitItem.name}}

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

青春期镰状细胞病相关疲劳：性别和身体与之有什么关系？

基本信息

批准号：
ES/V012150/1
负责人：
Brenda Poku
金额：
$ 11.78万
依托单位：
University of Nottingham
依托单位国家：
英国
项目类别：
Fellowship
财政年份：
2020
资助国家：
英国
起止时间：
2020 至无数据
项目状态：
已结题

来源：
https://gtr.ukri.org/projects?ref=ES%2FV012150%2F1
关键词：
Sickle cell disease related fatigue

项目摘要

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.

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严重疼痛（Piel等人，2013年）。与疼痛不同，疲劳在研究和护理中被低估。这种缺乏关注可能是由于人们认为疲劳是这种疾病不可避免的普遍后果，对此无能为力，因此必须由患有SCD的人忍受。因此，患有SCD的个体可能不愿意在临床咨询期间提出疲劳，而卫生专业人员可能通过关注SCD的更明显的方面而对疲劳给予不足的优先级（While &马伦，2004）。患有SCD的青少年可能特别容易受到疲劳的影响，这是由于增加的活动需求和期望与对自主性和独立性的增加的渴望以及对教育、职业、亲密关系和建立家庭的追求相关（Ameringer等人，2014年）。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，即他们如何得到护理提供者和家庭的支持和照顾。为了了解患有SCD的青少年如何经历疲劳，我的博士工作采用了Charmaz（2014）的建构主义扎根理论方法来构建一个理论，基于加纳患有SCD的青少年的经验来解释青春期SCD相关的疲劳。研究结果表明，疲劳是SCD青少年日常生活中最具限制性和破坏性的方面。疲劳无处不在，对日常功能、疼痛体验、情绪健康、自我/社会发展和未来前景产生了显著的负面影响。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些经验有很大贡献。(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，以充分梳理出社会学意义，从而更广泛地为健康和疾病社会学以及身体社会学做出贡献。这将加强证据的深度及其社会学贡献。(2)与加纳以SCD为重点的第三部门组织、医疗保健提供者和SCD青少年家庭接触。加纳的参与活动是研究金不可或缺的一部分。这些活动将支持交流研究成果;确保加纳主要利益攸关方了解并改变对SCD的认识和态度。(3)基于社会学分析，在社会科学和医学以及健康和疾病社会学中发表了两篇同行评议的文章，加上基于加纳参与活动的BMC研究参与和参与论文。将寻求机会在有关会议上介绍新知识。(4)制定一项资助建议，以建立并继续我在这一领域的工作。奖学金将因此提供充足的机会，从事我在博士期间无法专注的关键活动，即专注于我的博士数据中有关性别和身体的方面，并在加纳产生影响。它也将提供机会，进一步我目前的专业技能/能力。计划的期刊论文将支持创建出版跟踪记录，并提高我的学术写作技巧。传播/影响事件将提供空间，网络和提高我的沟通技巧，为学术和非学术观众在不同的背景和学科。该研究金还将使我能够制定一项资助建议，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，促进我过渡到一个既定的早期职业研究人员，并跳板我的学术生涯在医学社会学。