The following is a transcript of an interview with J. Nicholas Dionne-Odom, PhD, RN. Dr. Dionne-Odom is a Postdoctoral Fellow in the School of Nursing at the University of Alabama at Birmingham (UAB) and is board-certified in hospice and palliative care with over 10 years experience in critical care and 6 years experience in telehealth palliative care health coaching. He is a researcher whose work focuses on developing and conducting clinical trials of palliative care health coaching interventions for rural and minority family caregivers of individuals with advanced cancer and heart failure. Dr. Dionne-Odom is also interested in decision psychology in the setting of serious illness, particularly with the way family caregivers partner with their care recipients in their healthcare decision-making. He is currently funded by a 5-year, National Institutes of Health/National Institute of Nursing Research to develop and test a telehealth palliative care coaching intervention for rural underserved family caregivers of persons newly diagnosed with advanced cancer.
What was the catalyst for your interest in health coaching for caregivers?
I was an intensive care unit (ICU) nurse for 10 years and witnessed many families having traumatic experiences watching their loved ones receive very aggressive treatments at end of life. This experience capped what was the end of a very long road, often years, of providing daily support to someone who’d been struggling with serious illness. Many were unprepared for this role and what would happen at the end and nearly all had no support along the way.
And for cancer care in particular?
I began doing outpatient palliative care coaching for patients with newly-diagnosed advanced cancer and their family caregivers as part of a randomized controlled trial of an intervention called ENABLE (Educate, Nurture Advise Before Life Ends). Our approach to this support was based on a type of cognitive behavioral therapy called problem solving therapy (PST). The steps of PST share many similarities with health coaching, such as goal identification, brainstorming and action planning. This led me down a path of research and training where I sought to expand the counseling techniques I had acquired by pursuing more in depth training in health coaching, which I got through the Duke Integrative Medicine program.
What aspect of health coaching in cancer care is most interesting to you and why?
I think what I find most compelling about health coaching is its basis on the provision of a therapeutic relationship and the facilitation of therapeutic goal pursuance that is driven by the needs and values of the participant/client/family caregivers. I think this approach is consistent with numerous theories of adult learning and human behavior and I think pursuing research to test whether these health coaching techniques are both beneficial to clients and sustainable in the healthcare market/ecosystem is needed.
What do you believe the NINR saw in your subject matter that won their financial support?
I think they were compelled by what I conveyed in the grant, namely that the single greatest healthcare challenge in the coming decades is arguably how to best support the over 40 million family caregivers who provide support to the growing numbers of U.S. adults 65 and older (a figure expected to double by 2030) that is further intensified by a movement towards “aging in place”, dying at home, and the lengthened period of time that individuals live with serious debilitating illnesses. Care of these individuals largely falls on the unpaid efforts of family caregivers and these services are not ones that can be replaced by simply employing more healthcare professionals. Hence finding ways to better support and prepare these family caregivers who act as our “hidden” healthcare workforce is critical.
Describe the characteristics of the primary caregiver you see today providing end-of-life care and support?
We currently don’t have population-based data of who the “average” or “typical” family caregiver is who is providing care to loved ones at end of life. There is no widely employed systematic tracking system, like HIV, cancer or heart failure mechanical support registries that catalogs and tracks family caregivers and the types of care and assistance they are providing (though this is increasingly being seen as a priority by organizations such as the National Cancer Institute, the National Academies of Science, Engineering, and Health [formerly the Institute of Medicine], and the National Alliance for Family Caregiving). All that said, I am confident in saying that there is no “typical” primary family caregiver.
It’s often assumed that additional people to provide physical care is the most pressing burden that primary family caregivers face. Is this true? If no, what is the greatest burden that caregivers indicate they have?
Caregivers have a wide variety of circumstances; hence the burdens they face are vastly different, from the physical challenges of caregiving to the financial costs to the mental hardship of seeing someone struggle with illness. Hence, I would be cautious in naming any one burden as being the hardest.
Are there new physical and mental health issues/concerns (outside of those one might expect, e.g., stress, decreased participation in outside social activities, fatigue), that have arisen for caregivers due to our ever changing and fast-paced lifestyles today?
I think that healthcare technology and medicine continues to advance rapidly, which is great, but at the same time means that individuals live longer with serious illness that requires fairly complex daily management and support routines, many if not most of which fall on family caregivers.
How do you foresee health coaching as a vehicle to address these burdens/concerns?
Health coaching provides two things that I think are critical for family caregivers. First, it offers a therapeutic alliance that helps families feel validated and supported by a caring human being. Second, health coaching is flexible in its approach to address a near limitless number of problems and goals that caregivers come with.
What family dynamics have you identified to be particularly useful in successfully reducing the burden of the primary caregiver(s) in a family?
Open and skillful communication among family members is, from my experience, one of the greatest strengths a family can have in the setting of serious illness. Another is proactive health seeking behaviors, such that a family caregiver doesn’t hesitate to reach out to community and other resources for assistance.
What would you like to see change in Hospice care to enhance its end-of-life support of family caregivers?
It would be great if the Medicare Hospice Benefit could extend the family caregiver grief benefit (which covers counseling and support up to 6 months after the death of a care recipient) to the 6 months prior to a person’s death to help support them during this phase.
What technological advances do you believe could have a positive impact on caregiver burden?
New technology solutions for caregiving are being developed every day and recent data suggests that while caregivers are extremely interested in these technologies, they find it very overwhelming to take the time to research and test out different technologies as well as incorporate it into their busy daily routines.