Caregivers of patients with hematologic malignancies who undergo hematopoietic cell transplantation (HCT) may benefit from resources that facilitate adaptive coping with the demands of caregiving. The research – conducted by Hermioni L. Amonoo, MD, MPP, a psychiatrist and physician-scientist at Dana-Farber Cancer Institute in Boston, and colleagues – showed that caregivers of patients with hematologic malignancies who are undergoing HCT cope with high caregiver burden, psychological distress, and worse quality of life (QoL). Findings, which were published in Blood Advances, suggest that approach-oriented coping strategies were associated with less psychological distress and better QoL.
The cross-sectional study enrolled 170 caregivers of patients with hematologic malignancies who were hospitalized to undergo HCT. Caregivers had a median age of 53 (range = 47-64) years, and most were white (87%), non-Hispanic (96%), and female (77%). The investigators used the 28-item Brief COPE questionnaire, which assesses the use of 14 coping methods with two items for each method.
A significant proportion of caregivers reported high use of acceptance (55.9%), positive reframing (45.9%), and religious coping (44.1%), all of which were considered approach-oriented coping skills. Such approach-oriented coping was associated with less anxiety (β=-0.210; p=0.003) and symptoms of depression (β=-0.160; p=0.009), as well as better QoL (β=0.526; p=0.002). Avoidant coping included methods such as self-blame, denial, and behavioral disengagement. This coping approach was associated with more anxiety (β=0.687; p<0.001) and symptoms of depression (β=0.579; p<0.001) and worse QoL (β=-1.631; p<0.001).
Caregivers are essential to every aspect of the care continuum, Dr. Amonoo said, such that HCT recipients must have a designated caregiver.
“I don’t know if our health care system has done the best job of equipping caregivers with all that they need to do this job,” she added.
She explained that it’s becoming more common for patients to undergo transplant and then return home, but a successful recovery at home relies on having reliable caregivers. Patients recovering at home rely on caregivers for many tasks, including medication management and meal preparation. Caregivers may also need to drive patients to the cancer or transplant center twice a week – a drive that may be as long as six hours. Dr. Amonoo explained that the caregiver expectations for a patient who undergoes HCT are very different from those required after other medical procedures like a knee replacement.
“Stress is very high in this population, and we need to support our caregivers better in playing this really important role,” Dr. Amonoo said.
She suggested centers develop caregiver resources not just for the practical tasks such as administering the numerous medications, but also for coping. Study results suggested caregivers will do better if they learn adaptive coping skills such as positive reframing, emotional support, and acceptance. Dr. Amonoo explained that adaptive coping is not intuitive for everyone, but it is possible to meet people where they are and teach resilience.
“Patient and caregiver well-being are so interrelated,” Dr. Amonoo said, describing caregivers as the “hidden patients.” She noted her research is foundational in that the findings can be used to educate physicians and patients alike about the different coping skills and their relationship to QoL. Likewise, she said, she hopes there will be evidence-based supportive resources in the future that can facilitate adaptive coping to the multiple psychological and physical demands of caregiving.
Any conflicts of interest declared by the authors can be found in the original article.
Reference
Amonoo H, Johnson P, Nelson A, et al. Coping in caregivers of patients with hematologic malignancies undergoing hematopoietic stem cell transplantation [published online, 2022 Nov 18]. Blood Adv. doi: 10.1182/bloodadvances.2022008281.