As a former EMT in rural Virginia, Rachel Klimmek witnessed disparities faced by residents separated from good care by distance and poverty. So when she decided her PhD dissertation should look at health disparities among aging cancer survivors, Klimmek knew right where to start.
The Johns Hopkins University School of Nursing student and oncology nurse chose to examine the relationships between older, rural-dwelling patients and their support persons during the critical months of transition following cancer treatment. What Klimmek found is that the goals of patients and helpers can differ vastly—despite the best of intentions--and that this conflict, added to isolation and poverty, can slow the recovery process.
One issue was the over-protectiveness of caregivers who did not allow patients to do things for themselves out of worry that they would get hurt. This conflicted with the practical needs of patients to re-establish independence and return to “normal life.” Some people treated for cancer tended to minimize medical needs, even avoiding doctors, in order to keep “the precious daily routines they had so recently gotten back. They wanted to feel useful. They wanted to help others,” she says of older patients wrestling with feelings of stigma, disability, uncertainty, and depression. In addition to providing important physical, social, spiritual, and financial benefits during recovery, maintaining “productive engagement” through paid employment, caring for others, or volunteering helped offset many of these negative feelings. But one person’s engagement can be another’s endangerment.
“Keeping [patients] and helpers on the same page is crucial,” Klimmek says, sharing the tale of an overeager support person doing all of the everyday tasks around the house while the patient worried whether she’d be able to do them herself once she was on her own. “These acts of love are how we show we care,” Klimmek says, adding a key to her research: “But there is an art to both giving and accepting care from others. As nurses, we need to help aging patients and support persons strike that balance.”
Klimmek, with a successful defense behind her, says she feels a debt to those who opened their homes and lives to her, and hopes to continue the health disparities work at Johns Hopkins or an institution with similar interdisciplinary research strengths. “I was raised to believe we are here for a purpose,” she says, adding that there is much work left to do.
“Age is the single greatest risk factor for cancer,” Klimmek says, adding economic, geographic, and cultural challenges are reasons cancer disparities can be hard to overcome. “We may not be able to change some of these circumstances, but we can target these individuals for additional support.”