A qualitative study on relatives' perceptions of digital supportive care tools in oncology

As cancer care shifts to the home, relatives increasingly provide support to people with cancer and face emotional, informational, and practical challenges that digital supportive tools may help address. This study aims to explore relatives' perceptions of gaps in the cancer journey and their expectations, perceived benefits, and barriers regarding a digital supportive care tool in oncology.

A qualitative exploratory study was conducted using semi-structured online interviews with 20 relatives of patients with cancer who were currently providing, or had previously provided, support. Participants included family members and other close persons involved in supporting a person with cancer. Data were analyzed using reflexive thematic analysis.

Three themes emerged. First, participants described significant gaps in care, including unmet informational and psychosocial needs, communication challenges, the burden of supporting a relative with cancer, difficulties navigating health information, and feelings of illegitimacy when seeking support. Second, they outlined expectations for a well-designed digital tool, emphasizing usability, personalization, psychoeducational and emotional content, organizational features, hybrid human-digital guidance, inclusivity, and legitimacy through co-construction. Third, digital tools were viewed as potential bridges to support, information, and connection beyond hospital settings, facilitating communication and peer exchange. However, concerns were raised about emotional limitations, data security, complexity, and inequalities related to age, financial precarity, and digital literacy.

Co-designed, accessible, and integrated digital tools may complement psychosocial care and may help address the burden experienced by relatives throughout the cancer trajectory.