November is Caregiver Awareness Month, and timely results from a study published in Blood Advances suggest that, among caregivers of patients undergoing stem cell transplantation, how someone approaches coping may influence their levels of anxiety, depression, and poor quality of life (QOL) they experience. In particular, problem-solving and acceptance coping strategies seemed more helpful.
This study highlights that the psychological distress experienced by caregivers is real and that the way caregivers deal with the challenges they face in supporting their loved one affects their level of distress and their quality of life. We also know from previous research that the psychological well-being of caregivers affects patient outcomes.”
Hermioni Amonoo, MD, Dana-Farber Cancer Institute and Carol C. Nadelson, MD, Distinguished Chair in Psychiatry, Brigham and Women’s Hospital Boston, and study principal investigator
Most stem cell transplant centers require people preparing for a transplant to designate a primary caregiver – someone who will support them for the first 100 days after their transplant. Additionally, before undergoing a stem cell transplant for blood cancer, most patients receive induction chemotherapy, which effectively suppresses their immune system, leaving them highly vulnerable to infections and other medical complications.
Caregivers have many responsibilities, Dr. Amonoo said, including taking steps to protect patients from infections due to their highly immunocompromised state, helping patients take many medications correctly each day, helping patients prepare meals in accordance with post-transplant guidelines and coordinate communication. between patients and their healthcare teams.
“Our study underscores an urgent need for resources to help caregivers 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 cancer patients experience distress, loneliness, fatigue, sleep disturbances, financial worries, and poor quality of life, and that fatigue among caregivers of cancer patients undergoing a stem cell transplant is associated with slower growth of healthy new blood cells and poorer quality of sleep 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 area 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 himself if the patient misses a dose of medication or is late for an appointment. In contrast, approach-oriented coping strategies include active problem solving, seeking out sources of emotional support, and using “positive reframing” to think about their situation in a different way.
For this study, Dr. Amonoo and his colleagues recruited 170 primary caregivers of people with blood cancer who were undergoing stem cell transplants. A caregiver can be a spouse, relative, or friend that the patient has identified as their primary caregiver. Most caregivers were female (130 or 76.5%) and Caucasian (147 or 86.5%); their median age was 53. Shortly after the patient was admitted to hospital for their stem cell transplant, caregivers completed questionnaires about their use of different coping strategies, their symptoms of anxiety or depression, and their quality of life. Researchers have also examined caregiver 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 coping (44.1%) strategies. Caregivers who relied on approach-focused coping strategies like these (49.4%) had fewer symptoms of anxiety and depression and better quality of life than those who relied on avoidant coping strategies (32.9%).
“Strategies such as active problem solving and positive reframing seemed to be more useful for caregivers than strategies such as denial and self-blame,” Dr. Amonoo said. “In this study, we did not find an association between religious coping strategies and caregiver distress or quality of life, although some previous smaller studies have found such an association.”
“Coping strategies are neither good nor bad – you have to meet people where they are,” she added. “And caregivers can learn to use coping strategies that can be more helpful and can make them 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 this in a more positive way – for example, “I know there will be a lot of uncertainty while my loved one recovers from their stem cell transplant, but I’m not alone in this case – I can speak to the healthcare team when questions arise or when I feel inadequate about something I need to do.'”
Dr. Amonoo said her research group is working to develop a variety of interventions and resources for caregivers. “Our goal is to create resources that help caregivers succeed while empowering 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.
American Society of Hematology
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