Biobehavioral Pathways and Sociocultural Moderators in Quality of Life of Family Cancer Caregivers
Cancer affects the quality of life not only of persons with the disease but also of their family members and close friends. The impact on various aspects of caregivers’ quality of life (QOL) is significant throughout the trajectory of the illness (the time of diagnosis and treatment, mid- to long-term survivorship, and bereavement). My program of research aims to fill gaps in our knowledge about this impact.
The gaps in knowledge about physical aspects of caregiving are particularly large. I am addressing these gaps in a ACS-funded project, Ethnic Disparities in Cancer Caregivers’ Elevated Health Risk, a study that examines the associations between characteristics of cancer-related stress and quality of life outcomes with emphasis on physical health, the roles of ethnicity and cultural factors in the associations, and the biobehavioral pathways (inflammatory cytokines, salivary cortisol, oxytocin, gene expression, telomere, and health lifestyle behaviors) of the links, among family caregivers of colorectal cancer patients.
Dyadic and Individual Effects of Cancer in the Family
Cancer survivors and family caregivers tend to experience somewhat similar levels of distress and each person’s distress affects his/her own quality of life. Beyond the impact of cancer at the individual level, I also focus the dyadic, cross-over effects of cancer in the family. In other words, I examine the degree to which each person’s cancer experience has an independent effect on the partner’s quality of life. In several observational studies, my lab has found evidence of dyadic/cross-over effects in psychological distress, spirituality, social support resources, and healthy lifestyle behaviors among cancer survivors and their family caregivers. My lab is currently investigating cardiovascular reactivity and salivary cortisol responses to laboratory-induced stressors among adult cancer survivors and their spousal caregivers, and among young dating couples, as potential pathways for co-regulating stress between persons in close relationships (FAMILY Co-reguation Studies).
In an NIH-funded grant project (R01NR016838, Biological and Psychosocial Mechanisms of Cancer Caregivers’ Elevated Health Risk), my lab examines dyadic stress regulation between cancer caregivers and their patients, and test two dyadic stress regulatory pattens (coregulation and coagitation) as predictors of health outcomes. Coregulation and coagitation are quantified by cardiovascular, neuroendocrine, and self-reported affective reactivity and regulation, in response to a standardized stress situation that is relevant both to health and to close relationships. We then examine prospectively the extent to which the indicators of coregulation for this discrete stressor relate to daily outcomes (mood, diurnal cortisol, and sleep) and interim health outcomes (depressive symptoms, resting heart rate variability, and healthcare visits), and the degree to which gender moderates such effects. A supplemental study further examines the extent to which sleep coregulation is associated with gut microbiome. Findings of these studies will help us understand underlying biological and psychological mechanisms that are critical for identifying cancer caregivers and their patients who are at most risk for poor health due to their mutual stress regulation patterns.
International Cancer Survivorship Research
I have led an initiative in collaboration with International Psycho-Oncology Society (IPOS) that is to gauge the level of current involvement in clinical services and research for cancer patients/survivors in various age groups and their family caregivers. As the first phase of this initiative, an online survey is currently underway with healthcare professionals, researchers, and teachers about their perception of unmet needs for providing optimal care to persons touched by cancer around the globe. The survey is available in 15 languages: Catalan, Chinese (Simplified and Traditional), English, French, German, Hindi, Hungarian, Italian, Japanese, Korean, Portuguese, Romanian, Spanish, and Turkish.
Quality of Life of Cancer Survivors and Their Family Caregivers
One of my projects, the National Quality of Life Survey for Caregivers, has already documented indicators of caregivers’ QOL (psychosocial, physical, spiritual, and behavioral) at 2-year post-diagnosis (N > 1,600). This project has also identified psychosocial correlates (personality, relationship quality, social support, gender) of better or poorer outcomes. Follow-up assessments at 5 and 8 years post-diagnosis provide evidence of the long-term impact of cancer on family caregivers facing each of three situations: The first is caregivers whose care recipients now are in remission; the second is caregivers whose care recipients are undergoing treatment for recurrence, a second cancer, or late side-effects; and the third is caregivers whose care recipients are deceased.
Another project, the Study of Informal Cancer Care, was conducted at community hospitals and targeted the early phase of cancer caregivership and survivorship (from the time of diagnosis to 18-month post-diagnosis). Yet another project, the Hope Lodge Study, examined the psychosocial mechanisms of social support effects on patients’ and their family caregivers’ quality of life while they are away from home for cancer treatment.
Cancer Preventive Healthy Lifestyle Behaviors
I have also conducted a randomized controlled trial, Nutrition and Physical Activity, with over 2,500 participants. This project compared the effectiveness of a telephone counseling program versus self-help materials only, for the purpose of establishing weight loss or weight management and improving healthy diet and physical activity. Tailoring the effective components of this intervention to individuals with personal or family history of cancer, another project, Cancer Preventive Behaviors (CPB), tests the psychosocial factors related to improving cancer preventive behaviors, including healthy diet, physical activity, weight management, and cancer screening. My lab is currently testing the feasibility and acceptability of the Healthy U, Healthy FAMILY, a 12-week intervention that is delivered via internet (Skype) targeting improvement of physical activity and healthy diets in colorectal cancer survivors and their spouses (CPB) and improvement of healthy diets in patients with Crohn’s Disease and their family member (funded by the Helmsley Foundation). These studies also explore self-determination theory-based psychological mediators of the intervention effects on healthy lifestyle behavior changes.
