Gallacher Katie I, May Carl R, Langhorne Peter, Mair Frances S
Institute of Health and Wellbeing, University of Glasgow, 1 Horselethill Road, Glasgow, G12 9LX, Scotland.
Health Sciences, University of Southampton, Southampton, England.
BMC Fam Pract. 2018 Jan 9;19(1):9. doi: 10.1186/s12875-017-0691-4.
Treatment burden is the workload of healthcare experienced by those with long-term conditions and the impact that this has on well-being. Treatment burden can negatively impact on quality of life and adherence to treatments. Individuals are likely to differ in their ability to manage health problems and follow treatments, defined as patient capacity. This has been under investigated in stroke. The aim of this paper is to create a conceptual model of treatment burden and patient capacity for people who have had a stroke through exploration of their experiences of healthcare.
Interviews were conducted at home with 29 individuals who have had a stroke. These were recorded and transcribed verbatim. Fifteen explored treatment burden and were analysed by framework analysis underpinned by Normalisation Process Theory (NPT). Fourteen explored patient capacity and were analysed by thematic analysis. Taxonomies of treatment burden and patient capacity were created and a conceptual model produced.
Mean age was 68 years. Sixteen were men and 13 women. The following broad areas of treatment burden were identified: making sense of stroke management and planning care; interacting with others including health professionals, family and other stroke patients; enacting management strategies; and reflecting on management. Treatment burdens were identified as arising from either: the workload of healthcare; or the endurance of care deficiencies. Six factors were identified that influence patient capacity: personal attributes and skills; physical and cognitive abilities; support network; financial status; life workload, and environment.
Healthcare workload and the presence of care deficiencies can influence and be influenced by patient capacity. The quality and configuration of health and social care services has considerable influence on treatment burden and patient capacity. Findings have important implications for the design of clinical guidelines and healthcare delivery, highlighting issues such as the importance of good care co-ordination.
治疗负担是患有长期疾病的人所经历的医疗保健工作量及其对幸福感的影响。治疗负担会对生活质量和治疗依从性产生负面影响。个体在管理健康问题和遵循治疗方案的能力（即患者能力）方面可能存在差异。这在中风患者中尚未得到充分研究。本文旨在通过探索中风患者的医疗保健经历，构建一个关于治疗负担和患者能力的概念模型。
对29名中风患者进行了居家访谈。访谈内容进行了录音并逐字转录。其中15人探讨了治疗负担，并采用基于规范化过程理论（NPT）的框架分析法进行分析。14人探讨了患者能力，并采用主题分析法进行分析。创建了治疗负担和患者能力的分类法，并生成了一个概念模型。
平均年龄为68岁。男性16人，女性13人。确定了以下治疗负担的广泛领域：理解中风管理和规划护理；与他人互动，包括医疗专业人员、家人和其他中风患者；实施管理策略；以及反思管理。治疗负担被确定为源于以下两种情况之一：医疗保健工作量；或护理缺陷的承受能力。确定了影响患者能力的六个因素：个人属性和技能；身体和认知能力；支持网络；财务状况；生活工作量和环境。
医疗保健工作量和护理缺陷的存在会影响患者能力，同时也会受到患者能力的影响。健康和社会护理服务的质量与配置对治疗负担和患者能力有相当大的影响。研究结果对临床指南的制定和医疗服务的提供具有重要意义，突出了良好护理协调等问题的重要性。
