Prevalence of distress and its associated factors among caregivers of people diagnosed with cancer: A cross‐sectional study

Abstract

Aims and Objectives

To (i) determine prevalence of distress among caregivers of people living with cancer, (ii) describe caregivers’ most commonly reported problems and (iii) investigate which factors were associated with caregivers’ distress.

Background

The psychological distress associated with a cancer diagnosis jointly impacts those living with cancer and their caregivers(s). As the provision of clinical support moves towards a dyadic model, understanding the factors associated with caregivers’ distress is increasingly important.

Design

Cross‐sectional study.

Methods

Distress screening data were analysed for 956 caregivers (family and friends) of cancer patients accessing the Cancer Council Western Australia information and support line between 1 January 2016 and 31 December 2018. These data included caregivers' demographics and reported problems and their level of distress. Information related to their care recipient's cancer diagnosis was also captured. Caregivers' reported problems and levels of distress were measured using the distress thermometer and accompanying problem list (PL) developed by the National Comprehensive Cancer Network. A partial‐proportional logistic regression model was used to investigate which demographic factors and PL items were associated with increasing levels of caregiver distress. Pearlin's model of caregiving and stress process was used as a framework for discussion. The Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) checklist was followed.

Results

Nearly all caregivers (96.24%) recorded a clinically significant level of distress (≥4/10) and two thirds (66.74%) as severely distressed (≥7/10). Being female, self‐reporting sadness, a loss of interest in usual activities, sleep problems or problems with a partner or children were all significantly associated with increased levels of distress.

Conclusions

Caregivers of people with cancer reporting emotional or familial problems may be at greater risk of moderate and severe distress.

Relevance to Clinical Practice

Awareness and recognition of caregiver distress are vital, and referral pathways for caregivers are the important area of development.