Mayer Anna, Tsiouris Angeliki, Nölke Charlotte, Schwinn Tamara, Wiltink Jörg, Beutel Manfred E, Zwerenz Rüdiger
Klinik und Poliklinik für Psychosomatische Medizin und Psychotherapie, Universitätsmedizin der Johannes Gutenberg-Universität Mainz.
Rehabilitation (Stuttg). 2021 Apr;60(2):132-141. doi: 10.1055/a-1361-4993. Epub 2021 Apr 15.
Involving potential end users in the development process of digital interventions makes it possible to ensure that these programs meet the needs, requirements and expectations of future users, which in turn has a positive impact on acceptance and adherence. This contribution presents a participatory development approach for the patient-centered design of the psycho-oncological online self-help , which aims to provide support in coping with cancer.
Patients were involved in the developmental process at two points. At an early stage of development, semi-standardized in-depth interviews were conducted with patients diagnosed by different types of cancer (N=10) and were qualitatively evaluated with regard to their view of (1) the cancer disease and (2) the design of an online self-help on the content, structural and design levels. At a later stage, a prototype of the online self-help was evaluated in a pilot phase.
The qualitative analysis of the interviews with a total of N=742 codings resulted in five main content categories (changes in everyday life and future experience, changes in social relationships, processing mechanisms, loss of control, difficult emotions), which provide information about the central challenges and burdens of people with cancer. Participants showed particularly strong emotions around interpersonal concerns, so in addition to the emotion-based focus, the online self-help also included a focus on social relationships. Structural and design implications for development related primarily to clarity and user-friendliness. The pilot phase allowed evaluating whether the requirements for the online self-help that were described by cancer patients at an early stage of development were met.
Patient participation in the development process of the digital online self-help provided information for the design at various levels. Involving potential end users in several development phases can ensure that the requirements and suggestions have been sufficiently considered not only from the perspective of the developers, but also from the perspective of future users. These findings confirm the importance of a patient-centered approach in the development of digital offerings.
让潜在终端用户参与数字干预措施的开发过程，能够确保这些程序满足未来用户的需求、要求和期望，进而对接受度和依从性产生积极影响。本文介绍了一种用于心理肿瘤在线自助工具以患者为中心设计的参与式开发方法，该自助工具旨在为应对癌症提供支持。
患者在两个阶段参与开发过程。在开发早期，对被诊断患有不同类型癌症的患者（N = 10）进行了半标准化深度访谈，并从内容、结构和设计层面就他们对（1）癌症疾病以及（2）在线自助工具设计的看法进行了定性评估。在后期阶段，在线自助工具的原型在试点阶段进行了评估。
对总共N = 742个编码的访谈进行定性分析，得出了五个主要内容类别（日常生活和未来经历的变化、社会关系的变化、处理机制、失去控制、困难情绪），这些类别提供了有关癌症患者面临的核心挑战和负担的信息。参与者在人际关系问题上表现出特别强烈的情绪，因此除了基于情绪的关注外，在线自助工具还包括对社会关系的关注。开发的结构和设计影响主要与清晰度和用户友好性有关。试点阶段能够评估是否满足了癌症患者在开发早期所描述的在线自助工具的要求。
患者参与数字在线自助工具的开发过程为各个层面的设计提供了信息。让潜在终端用户参与多个开发阶段可以确保不仅从开发者的角度，而且从未来用户的角度充分考虑需求和建议。这些发现证实了以患者为中心的方法在数字产品开发中的重要性。
