Favarato Maria Helena, Germani Ana Claudia Camargo Gonçalves, Martins Milton de Arruda
Departamento de Medicina Interna, Faculdade de Medicina da Universidade de São Paulo, São Paulo, Brazil.
Departamento de Medicina Preventiva, Faculdade de Medicina da Universidade de São Paulo, Brazil.
J Multimorb Comorb. 2021 Mar 9;11:2633556521999509. doi: 10.1177/2633556521999509. eCollection 2021 Jan-Dec.
Multimorbidity requires complex and ongoing care. Understanding the subjective illness experience is critical to effective care. Literature isn't clear about illness perception in patients with multimorbidity followed in services of high complexity. This study aims to investigate the illness experience based on narratives about daily living and symptoms of patients with multimorbidity and pain in a tertiary health care service.
Qualitative narrative inquiry design with framework analysis from semi-structured interviews at a tertiary internal medicine outpatient clinic. Patients with Elixhauser comorbidity index ≧3 or and pain during the last week were included. Framework analysis was performed using 3 main patterns of illness experience from a previous study: "Gliding swan" (Resilience); "Stormy Seas" (Vulnerability); and "Stuck adrift" (Disruption); and identifying subthemes. One case study was selected from each main category. 43 patients, 14 classified as "gliding swan," 12 as "stormy seas" and 17 as "stuck adrift." Within the "gliding swan" group, positive examples of how to navigate through physical and emotional factors to sustain their wellbeing based on comprehension; In the "stormy seas" group, themes revolved around vulnerability, burden and ambiguity in relation to the health team. In the "stuck adrift" group the main content was about overwhelmed feelings and limitations.
Narratives brought the content about lacking personalized understanding of diseases, with great emotional repercussion. Some meaningful anchors were highlighted. This study reinforces multimorbidity and pain interact and that healthcare professional should be aware of the turbulences that can disturb navigation in the raging seas of long-term multimorbid conditions.
多种疾病共存需要复杂且持续的护理。理解主观疾病体验对于有效护理至关重要。关于在高度复杂服务中接受随访的多种疾病共存患者的疾病认知，文献中尚无明确阐述。本研究旨在基于三级医疗服务中多种疾病共存且伴有疼痛患者的日常生活及症状叙述，调查其疾病体验。
采用定性叙述探究设计，并对三级内科门诊的半结构化访谈进行框架分析。纳入埃利克斯豪泽共病指数≧3或上周有疼痛症状的患者。使用先前研究中的3种主要疾病体验模式进行框架分析：“滑行天鹅”（复原力）；“汹涌大海”（脆弱性）；以及“漂泊停滞”（扰乱）；并确定子主题。从每个主要类别中选取一个案例研究。43名患者，14名归类为“滑行天鹅”，12名归类为“汹涌大海”，17名归类为“漂泊停滞”。在“滑行天鹅”组中，有关于如何基于理解应对身体和情感因素以维持自身健康的积极示例；在“汹涌大海”组中，主题围绕与医疗团队相关的脆弱性、负担和不确定性；在“漂泊停滞”组中，主要内容是关于不堪重负的感觉和局限性。
叙述揭示了对疾病缺乏个性化理解的内容，具有巨大的情感影响。突出了一些有意义的要点。本研究强化了多种疾病共存与疼痛相互作用的观点，且医疗保健专业人员应意识到在长期多种疾病共存的汹涌浪潮中可能干扰前行的动荡因素。
