Scott Duncan Therese, Engström Jon, Riggare Sara, Hägglund Maria, Koch Sabine
Health Informatics Centre, Department of Learning, Informatics, Management and Ethics, Karolinska Institutet, Stockholm, Sweden.
Stockholm Business School, Stockholm University, Stockholm, Sweden.
J Particip Med. 2022 Nov 16;14(1):e39174. doi: 10.2196/39174.
Patient empowerment is an important concept and a movement toward person-centered care of patients with chronic conditions. Nevertheless, to date, most research on empowered patients or informal caregivers has been conducted from a narrow clinical perspective. Such research has mainly focused on how health care professionals can empower patients to increase self-care or compliance with treatment. Research on empowered patient and informal caregiver needs and self-empowering activities is scarce.
We aimed to explore empowering behaviors from a patient and informal caregiver perspective in the context of self-management and to understand how health care can support such behaviors better.
We used an exploratory, qualitative study design. A total of 15 semistructured interviews and 6 focus group interviews were conducted with 48 patients and informal caregivers. We analyzed the interviews using thematic analysis and used a directed content analysis to analyze the focus group interviews.
A total of 14 patterns of empowering behaviors were identified that were characterized by several exploratory and influencing activities performed by the participants. The participants expressed a desire to be more active in their care than what is expected and supported by health care professionals. The participants also desired better support for activities imposed on them by health care professionals.
To enable a transformation of the health care system to better support self-empowering behaviors, there is a need to develop self-management approaches from a patient and informal caregiver perspective.
患者赋权是一个重要概念，也是慢性病患者以患者为中心的护理发展趋势。然而，迄今为止，大多数关于赋权患者或非正式照护者的研究都是从狭义的临床角度进行的。此类研究主要关注医护人员如何赋予患者权力以提高自我护理能力或治疗依从性。关于赋权患者和非正式照护者需求以及自我赋权活动的研究较为匮乏。
我们旨在从患者和非正式照护者的角度，在自我管理的背景下探索赋权行为，并了解医疗保健如何更好地支持此类行为。
我们采用了探索性定性研究设计。对48名患者和非正式照护者进行了总共15次半结构化访谈和6次焦点小组访谈。我们使用主题分析法分析访谈内容，并使用定向内容分析法分析焦点小组访谈内容。
共识别出14种赋权行为模式，其特点是参与者进行了一些探索性和影响性活动。参与者表示希望在自身护理中比医护人员期望和支持的更加积极主动。参与者还希望能更好地支持医护人员强加给他们的活动。
为使医疗保健系统转型以更好地支持自我赋权行为，有必要从患者和非正式照护者的角度制定自我管理方法。
