P09.05.A Caregiver café in a neuro-oncological context

Abstract

Abstract Background Caregivers to patients with primary brain tumors often play a vital role in the direct care and support of the patient. Great responsibility is placed on their shoulders to manage practicalities during the cancer trajectory. Caregivers are asked to carry out procedures, report patient-related evaluations, coordinate care and treatment and deliver proper information to the healthcare providers. Hence, they tend to neglect their own physical and emotional needs as they priorities other tasks including financial issues, household and work while coping with family adjustment. Caregivers of patients with brain tumors experience a high level of burden and distress. It is shown in literature that caregiver interventions can reduce caregiver burden, distress and anxiety, and improve coping, relationships and physical functioning Aim: The aim of this study is to offer caregivers to join a caregiver café at the neuro-oncological department to 1) relax, meet and support each other, (2) be provided with information and answers to their questions, and (3) be recommended appropriate caregiver services. Material and Methods This is a user-based sequential three phase project. Applying a co-creation process with informal caregivers we first investigate their preferences, needs and considerations in relation to establishing a caregiver café. A user survey consisting of demographic characteristics and five study-specific and open-ended questions are conducted. Secondly, a project protocol with the design, content and practical planning will be outlined and presented for the patient/relative-user panel at the oncological department. After the final adjustment, a feasibility testing will take place in phase three. Results This three-phase project rest on a sequential project development, and findings from one phase will led to the detailed adjustment in the next. Due to its nature of following a participatory design we consider the results to be highly relevant to the users of health-care services. Results from phase I and II is ready to be presented in autumn 2022 including the preliminary results of the feasibility study (recruitment, adherence, safety etc). Conclusion Nurses working within neuro-oncology are e.g responsible for providing support, information and education for family caregivers. This project may inspire other nurses to carry out similar initiatives in clinical practice. Thereby we seek to strengthen the evidence on how, what and when the caregivers’ needs and concerns are best addressed with innovative solutions. Acknowledgement We like to thank the nurses at the neuro-oncology department, Rigshospitalet for their valuable input and for their participating with the user survey.