University of Manchester, NIHR School for Primary Care Research, UK.
Health (London). 2010 Mar;14(2):178-95. doi: 10.1177/1363459309353298.
Biographical accounts of illness offer useful insights into the social and adaptive processes of living with chronic illness. Yet there are concerns that the underlying theoretical assumptions of a reflexive self seeking to maintain meaning may not reflect the lived experience of individuals. A narrative emphasis may neglect the importance of emotional/felt experiences; while an analytical focus on disruptive processes may not adequately reflect the totality of actual events. In this study, we explored how well biographical theory supports understanding of individual lived experience. Narratives from 19 individuals identified from General Practice lists with a terminal diagnosis of cancer were analysed using the holistic-form approach described by Lieblich. Participants described an ongoing process of living their life, 'managing' disruptive events and maintaining an overall sense of well-being (narrative form = biographical flow). For a minority, continuity was lost when people's capacity to continue living their everyday lives was overwhelmed (narrative form = fracture). The identified emphasis was on individual creative capacity in the face of terminal illness, highlighting the importance of embodied experience in understanding outcome and need. Maintaining continuity was draining: exhaustion precipitated fracture and thus need for external help to restore continuity. By focusing on feelings associated with overall narrative form, rather than individual disruptive events, we highlight the context in which disruptive events are experienced, and individual perceptions of their relative importance. We conclude that combining narrative and emotion offers new insights into the value of understanding of biographical accounts of illness in the context of individual creative capacity. We discuss the possibilities for new approaches to clinical assessment and management of need.
疾病传记为理解慢性病患者的社会和适应过程提供了有用的见解。然而，有人担心，寻求保持意义的反思性自我的潜在理论假设可能无法反映个人的实际生活经验。叙事重点可能会忽略情感/感觉经验的重要性；而对破坏性过程的分析重点可能无法充分反映实际事件的全貌。在这项研究中，我们探讨了传记理论在多大程度上支持对个人生活经验的理解。使用利布利希（Lieblich）描述的整体形式方法对从普通诊所名单中确定的 19 名绝症癌症患者的叙述进行了分析。参与者描述了他们生活的持续过程，“管理”破坏性事件并保持整体幸福感（叙述形式=传记流动）。对于少数人来说，当人们继续日常生活的能力被压垮时，连续性就会丧失（叙述形式=断裂）。确定的重点是面对绝症时个人的创造力，强调了在理解结果和需求时体验的重要性。保持连续性会让人精疲力竭：疲惫会导致断裂，从而需要外部帮助来恢复连续性。通过关注与整体叙述形式相关的感觉，而不是个体的破坏性事件，我们突出了体验破坏性事件的背景以及个体对其相对重要性的看法。我们得出的结论是，结合叙事和情感可以为理解传记中的疾病提供新的见解个人创造性能力。我们讨论了在临床评估和需求管理方面采用新方法的可能性。
