Carma L. Bylund, PhD, FACH
Professor, Health Outcomes & Biomedical Informatics
College of Medicine
University of Florida
Current Funded Research Projects
Improving family and healthcare communication for caregivers of parents with blood cancer
PI: Bylund (Co-Is: Fisher, Arnold)
Funded by The Leukemia & Lymphoma Society and the Carolan Research Institute
Adult children caring for parents with blood cancers face many challenges. In a series of studies, we are first conducted semi-structured interviews with blood cancer caregivers, followed by a large scale survey of adult child caregivers to better understand these challenges. This data will then inform our development and testing of an interactive, online intervention to help them learn communication skills that will help them in their caregiving role.
Communication of dementia diagnoses: Investigating patient, family, & clinician experiences and developing best practices
MPIs: Armstrong & Bylund
Funded by the Ed & Ethyl Moore Alzheimer's Disease Research Program (Florida Department of Health)
Individuals with cognitive impairment and their families place high value on having a specific dementia diagnosis, but clinicians may be reluctant to give such diagnoses. In this study, we are conducting interviews with 20 patients, 20 caregivers, and 20 clinicians about their experiences with giving or receiving dementia diagnoses. This will lead to the development of best practice statements regarding communication of dementia diagnoses.
Doctor-patient cancer communication through telemedicine during COVID-19
PI: Bylund (Co-Is: Alpert, Markham, Paige, Murphy, and Harle)
Funded by the University of Florida CTSI
The recent pandemic has forced an abrupt shift to telemedicine for a significant portion of healthcare delivery. This change is particularly impactful in cancer care, which requires difficult and complex conversations about bad news, prognosis, and treatment decision-making. Further, cancer patients and survivors are particularly vulnerable to COVID-19, adding an additional layer of uncertainty. The immediate translational outcomes of this research project are to provide evidence-based guidance for oncologists who now communicate with patients using technology; and to provide easily accessed answers to UFHCC cancer patients’ most frequently asked questions about COVID-19. We will achieve these goals through the study aims: (1) To understand patients’ experiences with telemedicine during COVID-19; (2) To analyze patients’ most frequent concerns and questions about COVID-19 through analysis of secure messages; (3) To develop a set of recommended practices for oncologists for telemedicine communication and a set of COVID-19 FAQs for cancer patients.
Patients’ experiences with online information seeking and discussing online cancer information with their doctors: The UFHCC catchment area
PI: Bylund (Co-Is: Paige, Alpert)
Funded by the University of Florida College of Journalism & Communications
When faced with cancer, individuals and their family members often turn to the internet for information and support.
This internet use can potentially affect doctor-patient communication, as internet information has leveled the power imbalance in the doctor-patient relationship to
some extent. Our aims are: (1) To describe the general online health information seeking behaviors of individuals living in the UFHCC Catchment Area. (2) To describe the online cancer information seeking behaviors of cancer patients and caregivers at UFHCC.
(3) To understand UFHCC cancer patients and caregivers’ experiences with and preferences for talking with cancer care providers about online cancer information.
Young-adult caregiving daughters of mothers with breast cancer report severe psychosocial effects like depression and anxiety, which can persist years after treatment has ended. Not only do YACDs exhibit higher levels of emotional distress than daughters of mothers with no cancer history, they are more distressed than spousal caregivers. YACDs also have diminished immune functioning and increased stress hormones. Their chronic distress is linked to caregiver burden and heightened disease risk. Prolonged distress and impaired immunological functioning may further increase YACDs’ risk and, yet, these caregivers are under-represented in caregiving intervention research. Given that YACDs’ distress is highly correlated with their mothers’ and can negatively impact caregiving and both women’s health outcomes, interventions to enhance the short- and long-term health of both mothers with breast cancer and their YACDs are vital.
Developing a healthy communication practice (HCP) toolkit for mothers diagnosed with breast cancer and their young-adult daughter caregivers
MPIs: Fisher & Bylund (Co-Is: Pereira, Daily, Forthun, Lee)
Funded by the University of Florida Health Cancer Center
Dignity therapy for elderly cancer patients: Identifying mechanisms to promote desired outcomes
MPIs: Bylund & Bluck (Co-Is: Kittelson, Wilkie)
Funded by the University of Florida Health Cancer Center
Maintaining dignity at the end of life can be challenging for cancer patients. Dignity Therapy (DT) is an intervention that guides a patient through a structured life review process, resulting in a written Legacy Document that can be shared with the patient’s family members and friends. Though research has demonstrated that patients and families feel they benefit from DT, there has been a call for research to understand mechanisms that produce positive patient outcomes. We examine the empathic process involved in DT delivery and the extent of important psychosocial themes (purpose in life, meaning-making and communion) in a sub-sample of n=25 DT interactions. This work provides a feasibility assessment of our analytic methods with this population. Completion of this project will prepare the way for a larger study to analyze the sample (N=280) that is being collected in the parent study. In terms of increasing quality of care at end-of-life, this study will lead to a better understanding of when DT is most efficacious. It will guide honing of the intervention to improve patient care, with the goal of achieving meaningful psychosocial benefits for end-of-life cancer patients and their families.