A recent publication in JCO Oncology Practice,1 compares how patients with cancer and their caregivers prioritize their own unmet needs during the patient’s treatment journey. The article, “ ‘It’s Rougher on Me Than It Is on Him’: Family Caregiver–Generated and Prioritized Illness Concerns While Patients Undergo Cancer Treatments,” found that patients’ needs focus on the physical aspects of having cancer, whereas caregivers’ needs center on emotional and social concerns. The research team, led by Dr Kristin Levoy, PhD, MSN, RN, of Indiana University School of Nursing in Indianapolis, IN, noted the importance of these findings, given that the needs of patients and families are mostly defined during the end-of-life and survivorship phases, and caregivers’ perspectives are often left out. Because of the increasing demand to implement models of primary palliative care within the oncology setting, the investigators sought to illuminate the unmet needs of patients and caregivers.
Management of primary palliative care often falls under the responsibility of oncology nurses. In this setting, healthcare professionals who are not palliative care specialists are charged with providing educational, psychosocial, symptom management, and decision-making support. Because specialists are not required, primary palliative care is frequently thought to be a realistic, sustainable model for supporting the needs of individuals with a serious illness and their families from the time of diagnosis onward. By clarifying what patients and caregivers need during the treatment phase, healthcare professionals can better target their efforts toward delivery of responsive patient- and family-centered care.
This study was a secondary analysis of a larger study. Participants in the parent study were recruited from a large academic medical center in Philadelphia, PA. Patients were eligible if they met the following criteria: (1) at least 18 years of age; (2) solid tumor or multiple myeloma diagnosis (skin cancers were excluded); (3) currently receiving or recently completed anticancer therapy; (4) Black or White race; and (5) a score of at least a 4 on a 0- to10-point pain scale. Once approached and interested, patients were asked to identify a caregiver to participate with them in the study.
Freelisting was used to identify patient and caregiver priorities. This method, borrowed from cognitive anthropology, works by asking participants to write down all words that came to mind when they thought about their (or their family member’s) illness. The approach assumes that because participants share in the experience of freely writing down their own ideas, they will achieve a shared understanding of their experiences. The researchers performed a salience analysis on the freelisting results to summarize the most important unmet needs. Caregivers were also asked to complete interviews with the study team to describe their unmet needs in greater detail.
The study population of 65 patients and 24 caregivers represented a diversity of tumor types, racial backgrounds, and kinds of caregiver relationship. Patients freelisted their unmet needs, from most to least important, as “pain,” “death,” “fear,” “family,” and “awful.” Caregivers’ needs, also ranked in descending order, were “sadness,” “time-consuming,” “support,” “anger,” “tired,” “death,” and “frustration.”
The researchers then compared these results with common supportive oncology domains (informational, physical, emotional, social, and spiritual).2 Patients’ freelisting results primarily mapped onto the physical (eg, pain) and emotional (eg, death, fear, and awful) domains, whereas caregivers’ results mostly mapped onto the emotional (eg, sadness, anger, death, and frustration) and social (eg, time-consuming and support) domains. Caregiver interviews further described the intense feelings of anger and frustration with the upheaval that dedicating themselves to a family member created in their lives, and how managing appointments and care could be extremely exasperating.
The authors conclude that professionals delivering primary palliative care should regard patients and their caregivers together as the primary unit requiring care. They suggest that patient-focused care be centered on supporting physical needs, while caregivers’ may benefit from interventions that prioritize concerns about adjusting to the demands of their supportive role as well as addressing their own physical and emotional requirements. Because caregivers’ most salient concerns focused on the massive amount of work required to manage the logistics of cancer and their family member’s physical needs, support tailored to these issues can directly improve their well-being and thus, indirectly, improve support for patients.
This study adds to growing body of literature3 demonstrating the need to integrate family caregivers into models of cancer care. The findings further highlight the integral, and yet unrecognized, importance of caring for the caregivers who must effectively manage their loved one’s health concerns while addressing their own, often emotionally-laden needs related to supervising logistics and coping with the implications of cancer. Primary palliative care—which is often led by oncology nurses—can be tailored to meet the needs of both patients and caregivers to ensure both parts of the dyad get the right care at the right time.
1. Levoy K, Wool J, Ashare RL, Rosa WE, Barg FK, Meghani SH. “It’s rougher on me than it is on him”: family caregiver–generated and prioritized illness concerns while patients undergo cancer treatments. JCO Oncol Pract. 2021:OP2100164. Online ahead of print. https://doi.org/10.1200/op.21.00164
2. Hui D, Hannon BL, Zimmermann C, Bruera E. Improving patient and caregiver outcomes in oncology: Team-based, timely, and targeted palliative care. CA Cancer J Clin. 2018;68(5):356-376. https://doi.org/10.3322/caac.21490
3. Kent EE, Rowland JH, Northouse L, et al. Caring for caregivers and patients: research and clinical priorities for informal cancer caregiving. Cancer. 2016;122:1987-1995. https://doi.org/10.1002/cncr.29939