Occupational and Financial Setbacks in Caregivers of People with Colorectal Cancer: Considerations for Caregiver-Reported Outcomes

Abstract

Family caregivers of patients with cancer provide substantial physical, emotional, and functional care throughout the cancer trajectory. While caregiving can create employment and financial challenges, there is insufficient evidence to inform the development of caregiver-reported outcomes (CROs) that assess these experiences. The study purpose was to describe the occupational and financial consequences that were important to family caregivers of a patient with colorectal cancer (CRC) in the context of public health care, which represent potential considerations for CROs. In this qualitative Interpretive Description study, we analyzed interview data from 78 participants (25 caregivers, 37 patients, and 16 healthcare providers). Our findings point to temporary and long-term occupational and financial setbacks in the context of CRC. Caregiving for a person with CRC involved managing occupational implications, including (1) revamping employment arrangements, and (2) juggling work, family, and household demands. Caregiver financial struggles included (1) responding to financial demands at various stages of life, and (2) facing the spectre of lifelong expenses. Study findings offer novel insight into the cancer-related occupational and financial challenges facing caregivers, despite government-funded universal health care. Further research is warranted to develop CRO measures that assess the multifaceted nature of these challenges.

Highlights from the Second Choosing Wisely Africa conference: a roadmap to value-based cancer care in East Africa (9–10 February 2023, Dar es Salaam, Tanzania)

“…The impact of finances is shown in non-adherence to medications, and skipping appointments, patients had to cut back on basics like food, clothes and shelter, which can impact their diet and negatively impact their health. Studies show that cancer patients and survivors are more likely to go bankrupt than people without cancer [ 11 ]. Financial toxicity has a great impact on cancer treatment, particularly on adherence to treatment and quality of life.…”

Caregivers’ mental health in cancer journey: A Review

“…Caregivers may not only bear the financial burden of cancer but also find themselves incurring significant out-of-pocket expenses related to the patient's care. The social isolation stemming from caregiving can be particularly challenging [15]. Caregivers often find themselves with limited time for personal relationships and activities, which can lead to feelings of loneliness and isolation.…”