Health Coaching Aims to Support Caregivers of Patients with Advanced Cancer

July 29, 2016
Katie Hay

Caregivers of patients with advanced cancer often put their own needs aside to care for a loved one, but working to help improve this is Nick Dionne-Odom, a PhD, MSN, a postdoctoral fellow at the University of Alabama at Birmingham School of Nursing.

Nick Dionne-Odom, PhD, MSN

Caregivers of patients with advanced cancer often put their own needs aside to care for a loved one, but working to help improve this is Nick Dionne-Odom, PhD, MSN, a postdoctoral fellow at the University of Alabama at Birmingham School of Nursing.

His 10 years as an intensive care unit (ICU) nurse and 5 years in community-based palliative care fueled an idea that he’s working to get off the ground now, having received a 5-year, $935,000 grant from the National Institute of Nursing Research (a division of the National Institutes of Health).

Dionne-Odom is developing a palliative care health coaching program that he hopes will help caregivers of people with advanced cancer to set goals that will improve not only their skills as caregivers, but also their own health. After interviewing patients, caregivers, and patient navigators, Dionne-Odom and his team will develop a health coaching intervention that can be delivered by phone, tablet, or other telecommunications devices, and the intervention’s acceptance, feasibility, and potential benefits will be evaluated in a randomized controlled trial.

By 2020 the number of individuals with cancer in the United States is expected to swell by 31%, from 13 million to 18 million. Of those, the number in their last year of life is expected to increase from 901,000 to 1.217 million, most with a family member who provides necessary care, Dionne-Odom noted.

He also cited estimates that family caregivers provide 80% of the care for patients in the advanced stages of cancer at an estimated value of $642 billion annually, making it unfeasible to replace their services with paid healthcare professionals. This makes it imperative to develop interventions that help family caregivers stay healthy and functioning at a high level, for their sakes as well as their loved ones with cancer, Dionne-Odom stressed. Oncology Nursing News spoke with him recently about his efforts.

How did you come up with the health coaching idea?

Dionne-Odom: I was an ICU nurse for 10 years, and I have seen a lot of people die. Obviously, it’s traumatic for patients to die in the ICU, but it’s also extremely traumatic for family caregivers who are at the bedside. That experience, of seeing someone dying in the ICU, can have a long-lasting impact, which can be similar to posttraumatic stress, and it can last for months—even years. It’s really over and above the normal grief and bereavement that one would experience, and it’s specifically related to that experience of someone dying in that way.

Based on that experience and some of my dissertation work, I became part of a clinical trial to support caregivers and patients, but the caregivers received a separate intervention very early. The reason that we try to coach them early in the process is to prepare them, not for a specific problem that’s happening now, but for things that may come up in the future. We do it that early because people may have more ability at that time to learn and retain information in coping skills. If we tried to intervene with people too close to a traumatic experience, they really don’t have the capacity to learn as much information or develop coping skills.

How will the health coaching program work?

The program is still being developed, but currently my idea is to do an upfront assessment with caregivers. We expect to base the training on the needs they identify upfront, so it might not only be things related to skills as a caregiver such as administering medication, monitoring symptoms, or providing wound care. It would also be about helping the caregivers set goals for their own health, for example, staying physically active, getting out for social interaction, engaging in spiritual activities.

Typically, we would do that assessment upfront, then help caregivers set goals whether it is wanting to exercise more, or become better at knowing what kind of medications a spouse is taking, or wanting to be better at giving emotional support. Then we would help set specific action items for them to learn these skills.

Do you notice that caregivers tend to let their goals get pushed to the side?

Absolutely. Patient navigators are on the frontlines and have a lot of knowledge across care settings, and when I asked them, “You know in your opinion, what do you think caregivers struggle the most with?” most of them say that they tend to ignore their own health. They feel the need to completely dedicate themselves to providing 24/7 support. For example, the caregiver might consider going to a movie with a friend, but they wouldn’t, even if they had time, because they feel guilty that they’re not being completely dedicated.

What advice do you have for caregivers?

It’s a marathon, not a sprint. In order to give high-quality, loving care to this person you need to take care of yourself. You’re not alone. There are people, organizations, and support groups that are out there, but you have to reach out.