The psychosocial experience of people with sickle cell disease and its impact on quality of life: Qualitative findings from focus groups
The psychosocial experience of people with sickle cell disease and its impact on quality of life: Qualitative findings from focus groups
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DOI：
10.1348/135910702760213724
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发表时间：
2002-09-01
影响因子：
7.9
通讯作者：
Taylor, LM
中科院分区：
文献类型：
--
作者：
Thomas, VJ;Taylor, LM
目标.在这项探索性研究中，对镰状细胞病（SCD）患者的经历进行了深入分析，以了解该疾病的心理社会影响。该研究的另一个目的是确定这些经验是否可以根据世界卫生组织（WHOQOL）定义的生活质量进行概念化，以便为心理社会研究提供信息。这项研究利用了一系列非指导性的、以患者为主导的焦点小组，专门讨论镰状细胞病对生活的影响。参与者从伦敦的四个中心招募，每个中心分别举行八次焦点小组讨论（每次一小时）。总共32小时的焦点小组材料被录音和逐字转录。数据进行了分析，使用现象学的方法，以确定新兴的主题。确定了六个主题：与SCD一起成长;教育;疾病持续性的影响;就业;对人际关系的影响;和住院治疗。这项研究清楚地表明，SCD带来了巨大的心理负担，影响到身体，心理，社会和职业福祉以及独立性和环境水平。生活的这些方面相当于多维度WHOQOL的核心领域，因此我们认为SCD以重要的方式破坏生活质量。该论文提供了丰富的定性数据来源，以补充定量研究结果，并提供了复杂的人类过程和经验的细节，从而导致终身慢性疾病，如SCD。
Objectives. In this exploratory study, an in-depth analysis of accounts of the experiences of people with sickle cell disease (SCD) was undertaken to gain an understanding of the psychosocial impact of the disease. An additional aim of the study was to determine whether these experiences could be conceptualized in terms of quality of life as defined by the World Health Organization (WHOQOL) with the intention of informing psychosocial research.Design. This study utilized a series of non-directive, patient-led, focus groups that specifically addressed the ways in which sickle cell disease impacts on life. Participants were recruited from four centres in London and eight focus group discussions (each one hour in length) were held separately for each centre.Method. Altogether 32 hours of focus group materials were tape-recorded and transcribed verbatim. Data were analysed using a phenomenological approach to identify emerging themes.Results. Six themes were identified: Growing up with SCD; Education; Impact of the unremitting nature of the disease; Employment; Effects on relationships; and Hospitalization.Conclusion. This research has clearly shown that SCD carries a huge psychosocial burden impacting on physical, psychological, social and occupational well-being as well as levels of independence and environment. These aspects of life are equivalent to the core domains of the multi-dimensional WHOQOL and consequently we have argued that SCD undermines quality of life in important ways. The paper provides a rich source of qualitative data to complement quantitative findings and provides detail of the complex human processes and experiences consequent on a life-long chronic illness such as SCD.