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Is there a relationship between end-of-life cancer patients' dignity-related distress and caregivers' distress? An exploratory study

Palliative & supportive care(2023)

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Abstract
Objectives The mutual influence between end-of-life cancer patients and their family caregivers is widely endorsed. The present study aimed to explore the relationship between end-of-life cancer patients' dignity-related distress and the distress of their caregivers. Method A cross-sectional approach was used. The sample consisted of 128 patients with a Karnofsky Performance Status (KPS) below 50 and a life expectancy of a few weeks, and their family caregivers. Personal and clinical data were collected and validated rating scales were administered: Patient Dignity Inventory (PDI) to terminal cancer patients; Hospital Anxiety and Depression Scale (HADS), Demoralization Scale (DS), Herth Hope Index (HHI), Caregiver Reaction Assessment (CRA), Short Form Health Survey 36 (SF-36), and Distress Thermometer (DT) to caregivers. Results Findings highlighted significant correlations between patients' scores on the Psychological Distress PDI subscale and the PDI Total Score and caregivers' Emotional Role. Patients' Psychological Distress, PDI Total Score, and Loss of Purpose and Meaning were associated with caregivers' Disrupted Schedule. Finally, patients' Physical Symptoms and Dependency, Loss of Purpose and Meaning, and PDI Total Score were correlated with caregivers' Disheartenment. Significance of results The results highlighted the key role of dignity as a relational dimension during the end-of-life phase. Therefore, because of caregivers' distress could affect patients' dignity-related distress by influencing the interpersonal aspects of patients' autonomy, it would be important to relieve caregivers' distress in order to promote patients' autonomy and minimize their fear of being a burden.
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Key words
Cancer,Caregiver,Dignity-related distress,End of life,Palliative care
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