“This study highlights that the psychological distress caregivers experience is real, and how caregivers cope with the challenges they face in supporting their loved one affects their level of distress and their quality of life. We also know from prior research that caregivers’ psychological well-being affects patient outcomes,” said Hermioni Amonoo, MD, of the Dana-Farber Cancer Institute and Carol C. Nadelson, MD, Distinguished Chair in Psychiatry, Brigham and Women’s Hospital in Boston, and the study’s principal investigator.
Most stem cell transplant centers require people preparing to undergo a transplant to designate a primary caregiver – someone who will support them during the first 100 days after their transplant. In addition, before undergoing a stem-cell transplant for a blood cancer, most patients receive induction chemotherapy, which effectively wipes out their immune system, leaving them highly vulnerable to infection and other medical complications.
Caregivers have many responsibilities, Dr. Amonoo said, including taking steps to protect patients from infection due to their highly immunocompromised state, supporting patients to properly take numerous medications every day, helping patients prepare meals that adhere to post-transplant guidelines, and coordinating communication between patients and their health care teams.
“Our study underscores an urgent need for resources to help those caring for patients develop and use coping strategies that protect their mental health and quality of life and enable them to successfully fulfill this important role,” she said.
Previous studies have shown that caregivers of patients with cancer experience distress, loneliness, fatigue, sleep disturbance, financial worry, and poor QOL, and that fatigue among caregivers of patients undergoing a stem cell transplant is associated with slower growth of healthy new blood cells and poorer sleep quality for the patient. Dr. Amonoo took this research a step further by specifically studying the effects of different types of coping on caregivers and their loved ones.
“This is the largest study to date to examine caregiver coping strategies,” Dr. Amonoo said. “The whole field of caregiver research is very new,” she said.
Researchers in this field classify caregiver coping strategies into two broad categories called “avoidant” and “approach-oriented.” Avoidant coping strategies include denial of the reality of the situation, and self-blame, in which the caregiver blames themselves if the patient misses a medication dose or is late for an appointment. By contrast, approach-oriented coping strategies include active problem solving, finding sources of emotional support, and using “positive reframing” to think about their situation in a different way.
For this study, Dr. Amonoo and her colleagues enrolled 170 primary caregivers of people with a blood cancer who were undergoing a stem cell transplant. A caregiver could be a spouse, relative, or friend whom the patient identified as their primary caregiver. Most caregivers were female (130, or 76.5%) and white (147, or 86.5%); their median age was 53. Shortly after the patient’s admission to the hospital for their stem cell transplant, caregivers completed questionnaires that asked about their use of different coping strategies, symptoms of anxiety or depression, and QOL. The researchers also looked at caregivers’ reliance on religious beliefs as a coping strategy.
A significant number of caregivers reported high use of acceptance (55.9%), positive reframing (45.9%), and religious (44.1%) coping strategies. Caregivers who relied on approach-oriented coping strategies such as these (49.4%) had fewer symptoms of anxiety and depression and better QOL compared with those who relied on avoidant coping strategies (32.9%).
“Strategies such as active problem-solving and positive reframing seemed to be more helpful for caregivers than strategies such as denial and self-blame,” Dr. Amonoo said. “In this study, we didn’t find an association between religious coping strategies and caregiver distress or QOL, although some previous smaller studies have found such an association.”
“Coping strategies aren’t good or bad – you have to meet people where they are,” she added. “And caregivers can be taught to use coping strategies that may be more helpful and may enable them to feel less anxious, depressed, or overwhelmed. So if a caregiver is thinking, ‘My life will never be the same again,’ we can help them reframe that in a more positive way – for example, ‘I know there will be a lot of uncertainty as my loved one recovers from their stem cell transplant, but I’m not in this alone – I can talk to the care team when questions come up or when I feel inadequate about something I need to do.’”
Dr. Amonoo said that her research group is working on developing a variety of interventions and resources for caregivers. “Our goal is to create resources that help caregivers be successful while also enabling them to take care of their own mental health,” she said.
The study was funded by the National Cancer Institute and the Leukemia and Lymphoma Society.
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