Cancer can be destructive, but cancer treatments can feel just as detrimental to a person’s health. Individuals living with cancer often experience nutrition-related side effects from cancer treatment, including changes in taste and smell, nausea, diarrhea, loss of appetite and pain during eating. These side effects can profoundly impact nutrition, health and quality of life.
Led by researchers from Drexel University’s College of Nursing and Health Professions, a study exploring individuals’ and their family caregivers’ experiences with cancer treatment side effects, including the way they manage these side effects and the resulting changes in food preferences and behaviors, was recently published in Nutrients.
Participants – individuals living with cancer, who were undergoing cancer treatment (patients), and their caregivers – completed surveys and interviews reporting on treatment side effects. The surveys included questions that asked about treatment side effects and the extent to which they influenced eating and drinking, ability to cook and food preferences and aversions. The interviews focused on the presence and management of nutrition-related treatment side effects, such as altered taste and flavor, how those changes influenced food preferences and the extent to which they interfered with a patient’s quality of life. Interviews with caregivers also asked about caregivers’ own nutrition goals and how the cancer experience impacted their diet.
From the interviews, six themes were identified by the research team: spiral of side effects; pain of eating; burden of eating; loss of taste/change in taste; symptom management; and solutions.
“With the implications for food and nutrition practice, we concluded that, moving beyond traditional recommendations of what to eat or avoid, it is vital to consider the overall patient and caregiver experience,” said Brandy-Joe Milliron, PhD, an associate professor in the College and co-author of the publication.
Jonathan Deutsch, PhD, a professor in the College and co-author, said that understanding the experiences of both people with cancer and their family caregivers regarding cancer treatment side effects can yield multiple benefits, such as health care providers becoming better versed in helping patients and caregivers to anticipate and prepare for treatment side effects. If patients and their caregivers are better at anticipating and managing cancer treatment side effects, it can help both groups achieve improved nutrition and related health outcomes. Lastly, effective interventions to reduce or alleviate treatment side effects in people with cancer, as well as approaches to increase caregiver preparedness and ability to manage side effects, are needed and should be further investigated.
Their findings point toward some important considerations and recommendations:
Caregivers share in the experience of treatment and are a critically important, yet historically overlooked, group of individuals.
The researchers noted that considering their high sense of responsibility in alleviating side effects, caregivers should be engaged by health care professionals during patient care. Developing and testing interventions that improve caregivers’ nutrition and long-term health and increase their capacity to provide high-quality care is a top priority. But future research is needed to develop nutrition and culinary interventions – for both patient and caregiver – that harness the influential role that each person holds, while simultaneously being responsive to their unique needs.
Complementary and alternative medicine strategies can be an important part of person-centered care.
While nutrition was the entry point of their work, Milliron and her colleagues said open communication among patients, caregivers and cancer care providers is prerequisite to person-centered care and should be inclusive of patient preferences and their use and interest in CAM.
Being ill-prepared for the impact of cancer treatment, even when forewarned by their cancer care team, is a re-occurring and documented barrier.
They recommend that providers be transparent about anticipated side effects and their management.
Providers should also share experiences of patients and caregivers to be transparent about the severity of side effects and to reassure the patient or family that they are not alone or unique in their struggle.
“While referred to as side effects, the experience of these effects can be torturous and should be integrated into treatment rather than seen as an adjunct issue to the treatment protocol,” said Milliron.
This project was funded by the Health Research Formula Fund of Pennsylvania’s Department of Health and additional expenses were funded by the Stein Bellet Foundation and the Estate of Dorothy del Bueno. Co-authors include Dan Dychtwald, Cynthia Klobodu, both graduate students at Drexel University; Lora Packel, PhD, of University of the Sciences; Laura Pontiggia, PhD, of Thomas Jefferson University; and Ochi Ogbogu and Byron Barksdale of AstraZeneca Hope Lodge of the American Cancer Society.
When Eating Becomes Torturous: Understanding Nutrition-Related Cancer Treatment Side Effects among Individuals with Cancer and Their Caregivers
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