Getting back to normal? Patients' experiences and expectations following major illness or injury

大多数人在生命的某个阶段都有从严重疾病或伤害中恢复的经历。“恢复正常”一词通常用于描述恢复的进展或程度，并带有社会期望，即人们将恢复，这将是直截了当的。对疾病的叙述性描述表明，康复可能比这句话所暗示的更复杂，但令人惊讶的是，很少有研究考察患者对这一过程的经历。此外，与疾病相比，对患者受伤经历的研究要少得多。社会学研究表明，大多数人对疾病的起源有着复杂的想法（有时总结为“为什么是我？“为什么是现在？这些想法影响了他们作为病人的经历。此外，目前在康复期间提供的正式护理有限，医院病床使用率最大化的压力以及对初级和社区卫生服务的需求意味着康复主要发生在私人领域，这可能导致其在社会方面的相对隐蔽性。本研究将通过探索患者在许多不同领域的康复描述来填补这些空白，包括医院经验，向家庭的过渡以及在家庭、工作和其他地方恢复正常活动的过程不平衡。研究亦会探讨有关疾病或受伤的起因或成因的观念如何反过来影响康复的过程和经验，例如：意外跌倒如何影响人的信心，因而影响行动能力;癌症初期没有病征，令人害怕其他尚未发现的“无声疾病”;或心脏病发作的经历导致对生活有价值的方面的高度赞赏。该项目将对来自四个数据集的163个定性访谈进行二次分析。三个数据集（关于成年患者的心脏病发作，白血病和重症监护的经历），共118次访谈，来自牛津大学健康体验研究小组（HERG）的档案。第四个数据集，共有45个访谈，来自英国伤害负担研究。四个数据集中的所有访谈都遵循类似的模式，从认识问题，到寻求帮助，再到治疗及其效果。这四个数据集提供了不同类型的患者疾病/损伤、治疗和康复经历。有机会在两个层面上检查患者的体验和期望：每个数据集内和所有四个数据集。这四个数据集的样本在性别、年龄和社会背景方面都具有广泛的代表性，并提供了疾病/伤害与访谈之间的时间长度变化。分析方法将包括专题分析和叙述分析。 这项研究将由三位经验丰富的学术社会学家进行，分别位于赫特福德郡大学（托马斯）的初级和社区护理研究中心（CRIPACC）和萨里大学（Earthy和Sleney）的社会学系。这种合作将利用这些研究人员及其机构的互补优势和经验。将与牛津大学HERG和英国损伤负担研究的原始研究人员保持密切联系。 该项目将有利于学术研究，特别是医学社会学;患者，医疗保健从业人员，医疗保健专员和政策制定者;以及雇主和其他参与从严重健康事件中恢复的员工生活的人。将在项目结束时举行的传播日会议上与利益攸关方讨论研究结果及其对政策和实践的影响，并通过一个网站、会议介绍和一系列面向从业人员和学术界受众的出版物传播。

Most people at some stage in their lives have the experience of recovering from a serious illness or injury. The phrase 'getting back to normal' is often used to describe the progress or extent of recovery and carries with it social expectation that people will recover and that this will straightforward. Narrative accounts of illness suggest that the recovery may be more complex than this phrase suggests yet surprisingly little research has examined patients' experiences of this process. In addition, there has been much less research on patients' experiences of injury compared with that of illness. Sociological research had shown that most people have complex ideas about how illness originates (sometimes summarised as 'why me? 'why now?') and that such ideas influence their experiences as patients. Moreover, the current limited provision of formal care during convalescence, pressures to maximise hospital bed use and demands on primary and community health services mean that recovery takes place mainly in the private domain and this may contribute to its relative invisibility in social terms.This study will fill these gaps by exploring patients' accounts of recovery in a number of different arenas including hospital experience, transition to home and uneven processes of resuming normal activities at home, work and elsewhere. The study will also examine how ideas about the origin or cause of the illness or injury in turn affect the process and experience of recovery for example: how an unexpected fall may affect someone's confidence and hence mobility; the absence of symptoms in the early stages of cancer creating fear of other as yet undetected 'silent disease'; or the experience of heart attack leading to an heightened appreciation of valued aspects of life.This project will undertake a secondary analysis of 163 qualitative interviews from four datasets. Three datasets (on adult patients' experiences of heart attack, leukaemia and intensive care), with a total of 118 interviews, are from the archive of the Health Experiences Research Group (HERG), University of Oxford. The fourth dataset, with a total of 45 interviews, is from the UK Burden of Injury Study. All interviews in the four datasets follow a similar pattern from recognition of a problem, through help-seeking to treatment and its effects. These four datasets offer diverse types of patient experiences of illness/injury, treatment and recovery. There is opportunity to examine patients' experiences and expectations at two levels: within each dataset and across all four datasets. The samples for each of the four datasets are broadly representative in terms of gender, age and social backgrounds, and offer variation in the length of time that has elapsed between the illness/injury and the interview. The methodology will include thematic and narrative approaches to analysis. The research will be conducted by three experienced academic sociologists, based respectively in the Centre for Research in Primary and Community Care (CRIPACC), University of Hertfordshire (Thomas) and the Department of Sociology, University of Surrey (Earthy and Sleney). This collaboration will draw on the complementary strengths and experience of these researchers and their institutions. Close contacts will be maintained with the original researchers at the HERG, University of Oxford and from the UK Burden of Injury Study. The project will benefit academic research, notably in medical sociology; patients, health care practitioners, healthcare commissioners and policy makers; and employers and others involved in the lives of employees recovering from a serious health event. The research findings and implications for policy and practice will be discussed with stakeholders at a dissemination day conference held at the end of the project and disseminated via a website, conference presentations and in a range of publications for practitioner and academic audiences.