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.
Background The concept of patient navigation was first established in the USA to support vulnerable patient groups in receiving timely and comprehensive access to cancer care. It has recently gained increasing interest in Germany to support patients with chronic diseases in a fragmented healthcare system. The aim of this paper is to present the development of such a model adapted to the German context based on the results of mixed-methods studies investigating the need for and barriers to patient-oriented care. Methods In a process adapted from Delphi rounds, we conducted regular structured workshops with investigators of the project to discuss results of their studies and identify content and structure of the model based on the data. Workshop discussions were structured along seven core components of a navigation model including target patient groups, navigator tasks, occupational background and education of navigators, and patient-navigator interaction mode. Results Using an approach based on empirical data of current care practices with special focus on patients’ perspectives, we developed a patient-oriented navigation model for patients who have experienced stroke and lung cancer in the German healthcare context. Patients without personal social support were viewed as struggling most with the healthcare system, as well as multimorbid and elderly patients. Navigators should serve as a longer-term contact person with a flexible contact mode and timing based on the individual situation and preferences of patients. Navigator tasks include the provision of administrative and organizational support as well as referral and guidance to available resources and beneficial health programs with special forms of knowledge. Implementation of the navigator should be flexibly located to ensure a reliable outreach to vulnerable patients for first contact in settings like specialized in-patient and out-patient settings, while navigation itself focuses on care coordination in the out-patient setting. Conclusion Flexibility of navigator tasks needed to be a core characteristic of a navigation model to be perceived as supportive from patients’ perspectives. In a subsequent feasibility study, an intervention based on the model will be evaluated according to its acceptance, demand, and practicality.
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