Caregivers are the unsung heroes in cancer care. They may be spouses, family members, or close friends. They are not paid and are usually not trained to provide cancer care, yet they often become the lifeline for a person with cancer.
Caregivers are faced with information needs as soon as their loved one is diagnosed, when they immediately become immersed in helping to make medical choices for which they are typically ill prepared. The weight of treatment decision-making involves significant logistical, physical, emotional, financial, and professional consequences. The challenges that cancer caregivers face are often exacerbated by a lack of information and knowledge sufficient to make sound medical and treatment decisions. In fact, recent studies, including ours, indicated that 30-40% need more information when they are in decision-making roles.
Cancer Caregivers: National Research Report on Shared Treatment Decision-Making is a broad and deep exploration of shared decision-making dynamics, challenges and needs. It is based on the survey responses from a nationally representative sample of 2,700 unique cancer caregivers, and indicates that most need more information in order to more effectively share in making these very important decisions. It also shows that many of them are dissatisfied with the educational materials provided by the care team. The detailed data and analyses identify the scenarios that caregivers find particularly perplexing and why. We learn what exacerbates their distress and their opinions regarding resources and programs that could help them as they strive to provide the very best care. It provides enlightening findings regarding Hispanic vs. non-Hispanic caregivers, and identifies a psycho-social segmentation scheme that helps us understand the specific challenges and needs of each group.
The white paper, Caregiver Treatment Decision-Making, is based on a series of focus groups among CancerCare social workers and cancer caregivers. It explores the various ways caregivers participate in decision-making, their uncertainly and the lack of support they receive from clinicians.