Identifying problems and offering greater guidance to caregivers for patients with hematologic malignancies undergoing hematopoietic stem cell transplantation (HSCT) may help improve outcomes. These caregivers cope with high caregiver burden, greater psychological distress, and worse quality of life (QOL).
However, a secondary analysis of data collected during a multisite randomized clinical trial of a supportive care intervention in HSCT recipients and their caregivers has identified optimal coping mechanisms and potential changes needed to improve care.
“This study is the largest to date looking at coping strategies in caregivers of patients with hematologic malignancies, a vulnerable patient population, where caregiver involvement is crucial to their recovery,” said study investigator Hermioni L. Amonoo, MD, who is the director of the Well-Being and Cancer Research Program at Brigham and Women’s Hospital and Dana-Farber Cancer Institute in Boston, Massachusetts.
She stated caregiver burden is high for many patients with serious illnesses, including cancer, and it is crucial to understand the coping needs to help curate effective resources which can impact their well-being and that of their loved ones. Currently, there are little data on coping mechanisms and optimal approaches for caregivers of patients with hematologic malignancies.
For this investigation, caregivers completed the Brief COPE, Hospital Anxiety and Depression Scale, and the Caregiver Oncology Quality of Life Questionnaire. The researchers grouped coping into 2 higher-order domains. The first was approach-oriented (such as emotional support and active coping) and the second was avoidant (such as self-blame and denial).
The study included 170 caregivers with a median age of 53 years (range: 47-64 years). The participants were mostly female (n = 130; 76.5%) and White (n = 147; 86.5%).
Using multivariate linear regression models to assess the relationship between coping and caregiver outcomes, the researchers found that approach-oriented coping was associated with less anxiety (β = −0.210, P =.003), less depression symptoms (β = −0.160, P =.009), and better QOL (β = 0.526, P =.002). However, avoidant coping was associated with more anxiety (β = 0.687, P <.001), more depression symptoms (β = 0.579, P <.001), and worse QOL (β = −1.631, P <.001).
“It was surprising to find how much coping impacts psychological health and quality of life in a significant way,” said Dr Amonoo. “I think these findings may apply for caregivers of patients with serious illnesses in general outside hematologic conditions. As we increasingly know that caregiver outcomes impact patients’ outcomes, more work is needed to develop support care resources for our caregivers.”
The study authors concluded that caregivers may benefit from resources that encourage adaptive coping. Managing complex medication regimens, monitoring potential indicators of transplant-related complications, and preparing meals that follow post-transplant guidelines fall on the shoulders of caregivers.
When looking at caregivers of patients with acute myeloid leukemia (AML), caregivers who more often engaged in coping mechanisms such as avoidance, escape, and distancing experienced significantly higher caregiver burden. Caregivers who used active mechanisms such as positive appraisal reported a significantly lower caregiver burden.
In this study, 49.4% of caregivers reported high use of approach-oriented coping strategies compared with 32.9% of caregivers who reported high use of avoidant coping strategies. The study was conducted at 3 academic cancer centers and it lacked racial and ethnic diversity.