[Development of a Psychosocial Online Self-Help Program for Cancer Patients: A Patient-Oriented Approach]

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 epos, 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 epos 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.