What do people with lung cancer and stroke expect from patient navigation? A qualitative study in Germany

Abstract

ObjectiveThis qualitative study investigated patients’ needs and wishes in relation to patient navigation.DesignA qualitative interview study was conducted. Participants were invited to take part in three in-depth interviews over a period of 6–12 months. Thematic analysis was used.SettingInterviewees were sought in the Berlin metropolitan area of Germany in academic university hospitals, in rehabilitation clinics and through self-help organisations.ParticipantsThe sample consisted of individuals diagnosed with lung cancer (n=20) or stroke (n=20).ResultsFrom the perspective of interviewees, patient navigators should function as consistent contact persons, present during the whole care trajectory. Their role would be to guide patients through an often confusing healthcare landscape, offering practical, advisory and emotional assistance corresponding to patients’ needs. The study shows that—independent of the disease—participants had similar expectations and needs regarding support from navigators.ConclusionFor chronic and complex diseases—as is the case with lung cancer and stroke—it appears less important for navigators to fulfil disease-specific tasks. Rather, they should ensure that patients’ more general needs, in relation to social, practical and emotional support, are met in a way that suits their individual wishes. Following these results, patient navigation programmes might be designed to include generic elements, which should then be adapted to the infrastructure in a particular healthcare region and to the particularities of a specific healthcare system.