High attrition but positive trends such as increased “benefit finding” were observed with a Web-based intervention designed to address the psychosocial burden on informal caregivers, according to Allison J. Applebaum, PhD, a licensed clinical psychologist at Memorial Sloan Kettering Cancer Center in New York.
Comprehensive cancer care includes attending to the needs of informal caregivers experiencing distress, but psychosocial resources for this population are limited and underutilized, especially when offered in person. Although distress is common among caregivers, the caregiving experience can foster meaning and a sense of purpose, thereby lessening its burden. Dr. Applebaum and her team hypothesized that a support program delivered over the Internet and flexibly self-administered could address caregivers’ barriers to engaging in care while giving them the opportunity to find meaning in the act of providing care to a loved one with cancer.
The investigators designed a Web-based intervention called the Care for the Cancer Caregiver Workshop and tested its acceptability and preliminary efficacy through a pilot randomized controlled trial. They designed the workshop by adapting Meaning-Centered Psychotherapy for Cancer Caregivers, an intervention designed to address existential distress and promote meaning-making among informal caregivers. They presented their results in a poster at the 2017 American Psychosocial Oncology Society (APOS) Annual Conference in Orlando, Florida.1
Study Design
A total of 84 adult (age ≥ 18) informal caregivers of patients with any stage of cancer at any site were recruited from Memorial Sloan Kettering Cancer Center and across the United States through the American Cancer Society. Participants were randomly assigned to the Care for the Cancer Caregiver Workshop or a waitlist control arm. Caregivers in both arms were assessed before, during, and after study completion.
The Care for the Cancer Caregiver Workshop consisted of five self-administered webcasts, each of which incorporated psychoeducation about unique topics related to core Meaning Centered Psychotherapy concepts, including legacy, choice, creativity, and connectedness. Additionally, each webcast included video clips of staged therapeutic interactions between therapists and informal caregivers and a message board where study participants could post responses to experiential exercise questions. By using six different validated scales, the researchers measured meaning in caregiving, sense of meaning and purpose in life, caregiver burden, depression and anxiety, spiritual well-being, and benefit finding.
High Attrition
Attrition was high but comparable to other studies on informal caregivers. Notably, however, the investigators observed higher attrition among participants randomized to the Care for the Cancer Caregiver Workshop than among those in the control arm. “We know that attrition is high among caregivers enrolled in in-person therapy, but we found in our study that attrition is high even when you’re delivering something over the Internet that’s self-administered,” Dr. Applebaum told The ASCO Post.
Overall, participants were very enthusiastic about an intervention focused on meaning in the experience of providing care.— Allison J. Applebaum, PhD
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Higher attrition was also observed among men and informal caregivers providing care for less than 1.5 years. The most commonly cited reasons for attrition were feeling too overwhelmed by care responsibilities and becoming bereaved during the course of the study. But importantly, the challenges posed by the use of a novel, self-administered, Web-based intervention were not identified as a reason for attrition, the investigators reported.
“Not surprisingly, those who dropped out of the study were taking care of patients with stage IV cancer, and some were bereaved. But most interestingly, those who dropped out were providing care for shorter periods,” she observed. “We hypothesized that providing care for a longer period (≥ 1.5 years) allows for a greater opportunity to make meaning of your experience.”
Important Trends
Although they were not statistically significant, important trends emerged. According to Dr. Applebaum, there was a trend toward increased benefit-finding among study participants, meaning they were able to find benefit in their experience despite distress related to caregiving. “What’s really important is that individuals can experience suffering in caregiving but also make meaning of their experience,” she explained. Trends also indicated increased meaning in caregiving and decreased depressive symptomatology.
She added that based on qualitative analysis of the 84 caregivers randomized, “overall, participants were very enthusiastic about an intervention focused on meaning in the experience of providing care.” The efficacy of the Care for the Cancer Caregiver Workshop on psychosocial well-being will be further evaluated in a larger-scale trial. ■
Disclosure: Funding for this study was provided by the American Cancer Society.
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