To be or not to be in the social media arena? The perspective of healthcare providers working within adolescent and young adult oncology in Switzerland

Abstract

BackgroundGiven that social media is quickly penetrating clinical practice, it is essential to explore how these technologies can be used to improve patient-centered care. This is particularly important for healthcare professionals caring for adolescents and young adults (AYA), amid whom the use of social media is nearly universal and whose medical and psychosocial needs are often underestimated by the pediatric or adult oncology settings in which they are treated.ObjectivesTo examine the perspectives of various medical professionals on the emerging role of social media in AYA oncology.MethodsThree focus groups were performed with Swiss healthcare professionals involved in the care of AYA patients with cancer. The focus groups were analyzed using thematic coding.ResultsHealthcare professionals caring for AYA cancer patients in Switzerland are reluctant to step into the social media sphere because they find it difficult to navigate professional boundaries in an unfamiliar space where different contexts collapse. Nurses and younger healthcare professionals who tend to have a more intimate relationship with AYA, often lack virtual mentorship to know how to maintain online professionalism. Adolescents and young adults cancer-related social media presence was unknown to our participants which resulted in missed occasions to inform, educate and care for this often underserved population of cancer patients.ConclusionsMore practical guidance is needed to help healthcare professionals with how to integrate social media into clinical practice. Setting up fruitful collaborations between medical institutions and existing AYA support groups online might be the best way forward.

Tracheostomy decision-making for children with medical complexity: What supports and resources do caregivers need?

“…When parents of children with rare diseases were surveyed, 78% shared information about what they learnt from the internet with their HCPs, but only 22% stated that their HCP was "very interested" in that information (Nicholl et al, 2017). HCPs may be reluctant to engage with parents through internet/social media for fear of violating professional boundaries (De Clercq et al, 2020). Parents of children with tracheostomy use social media for gaining knowledge and for getting medical advice (Huestis et al, 2020).…”