Early palliative care for those who care: A qualitative exploration of cancer caregivers’ information needs during hospital stays

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.

Family Caregivers’ Experiences of Caring for Advanced Cancer Patients

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Supportive interventions for family members of very seriously ill patients in inpatient care: A systematic review

“…Meetings with family members have been a commonly used procedure in inpatient care where very seriously ill patients are treated; however, the effectiveness of these meetings has been poorly researched (Cahill et al, 2017). Several interventions offer educational support to enhance competence and preparedness for the caregiver role, as it has been noticed that caregivers have unmet informational needs during inpatient care (Preisler et al, 2019), and they struggle when adjusting to their role as a caregiver (Fujinami et al, 2015; Li & Loke, 2013).…”

Cancer patients' expectations when undergoing extensive molecular diagnostics—A qualitative study

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