Martina Preisler1, Amy Rohrmoser2, Ute Goerling2, Friederike Kendel3, Konrad Bär1, Manuel Riemer4, Silke Heuse3, Anne Letsch1. 1. Medical Department, Division of Hematology and Oncology, Charité - Universitätsmedizin Berlin, Corporate Member of Freie Universität Berlin, Humboldt-Universität zu Berlin and Berlin Institute of Health, Berlin, Germany. 2. Medical Department, Charité Comprehensive Cancer Center, Charité - Universitätsmedizin Berlin, Corporate Member of Freie Universität Berlin, Humboldt-Universität zu Berlin and Berlin Institute of Health, Berlin, Germany. 3. Institute of Medical Psychology, Charité - Universitätsmedizin Berlin, Corporate Member of Freie Universität Berlin, Humboldt-Universität zu Berlin, and Berlin Institute of Health, Berlin, Germany. 4. Wilfrid Laurier University, Department of Psychology, Waterloo, Ontario, Canada.
Abstract
BACKGROUND: The supporting role of caregivers is crucial to cancer patients' care and well-being. Periods of inpatient hospital treatment are common in the cancer trajectory. There is insufficient systematic knowledge of caregivers' experiences and information needs in hospital context. AIM: Aim of this study is to identify information needs and factors contributing to unmet information needs of caregivers in hospital. DESIGN: A qualitative approach was used to identify major themes and specific types of information needs. Interviews with caregivers were conducted and analysed using a qualitative three-step process. SETTING/PARTICIPANTS: The study was conducted in a hospital oncology department. Seventeen caregivers of patients with advanced cancer were interviewed. RESULTS: Caregivers' needs during inpatient treatment vary and are largely unmet. Four major themes emerged from the analysis, revealing information needs of caregivers related to the cancer disease, patient, caregivers themselves and hospital context. The most mentioned issues were appropriate treatment, treatment outcomes and the related consequences for caregivers' life, hospital processes and transition back home. CONCLUSION: Caregivers have a variety of specific information needs which often remain unmet. Based on our findings, we provide recommendations for integrating caregivers into oncology care, which should be implemented in clinical practice, policy decisions and research.
BACKGROUND: The supporting role of caregivers is crucial to cancerpatients' care and well-being. Periods of inpatient hospital treatment are common in the cancer trajectory. There is insufficient systematic knowledge of caregivers' experiences and information needs in hospital context. AIM: Aim of this study is to identify information needs and factors contributing to unmet information needs of caregivers in hospital. DESIGN: A qualitative approach was used to identify major themes and specific types of information needs. Interviews with caregivers were conducted and analysed using a qualitative three-step process. SETTING/PARTICIPANTS: The study was conducted in a hospital oncology department. Seventeen caregivers of patients with advanced cancer were interviewed. RESULTS: Caregivers' needs during inpatient treatment vary and are largely unmet. Four major themes emerged from the analysis, revealing information needs of caregivers related to the cancer disease, patient, caregivers themselves and hospital context. The most mentioned issues were appropriate treatment, treatment outcomes and the related consequences for caregivers' life, hospital processes and transition back home. CONCLUSION: Caregivers have a variety of specific information needs which often remain unmet. Based on our findings, we provide recommendations for integrating caregivers into oncology care, which should be implemented in clinical practice, policy decisions and research.