Caregivers of older patients with acute myeloid leukemia (AML) may benefit from more support, particularly now that treatments have increasingly moved care to the outpatient setting, and oncology nurses could especially play a role in providing support during bereavement. This is according to a new study published in the Clinical Journal of Oncology Nursing.
“Although interventions for oncology and palliative care are targeted before loss, the current study’s findings indicate that nursing involvement in bereavement care before and after loss is particularly important for caregivers coping with AML,” the researchers noted in their study findings.
The study was conducted as a part of a palliative and supportive care intervention study involving patients and caregivers. Inclusion criteria included a diagnosis of AML, age 60 years and older, and treated with hypomethylating agents and venetoclax. This study was based on interviews with caregivers during bereavement, with attention to the caregiver experience from diagnosis through end of life and bereavement.
Twenty patients and 14 caregivers were enrolled; 3 patients died during follow-up. Two surviving caregivers agreed to be interviewed at 3 to 6 months into bereavement.
The caregivers who were interviewed described unmet support needs, including a lack of information provided at a level appropriate for understanding or related to the stage of diagnosis or treatment, and tailored to the caregiver. Both caregivers also experienced shock, disbelief, and confusion as their loved ones deteriorated.
Social support, goals-of-care discussions, and an experience of closure with the care team were identified as beneficial sources of support. “Personalized, genuine expressions of condolences from their healthcare team via telephone calls and handwritten cards were particularly meaningful” for closure with the care team, explained the researchers.
Factors associated with a risk of complicated grieving were identified. Some factors were associated with the caregiver’s relationship with the patient or family dynamics, a history of losses or trauma, distress, financial burden, and others.
Suggestions for how nurses could support caregivers during survivorship include establish trust with the caregivers, educate them about the disease course and end-of-life care, and anticipate when situations are likely to provoke strong emotional reactions. In bereavement, clinicians involved in the patient’s treatment could reach out to the caregivers, offer condolences, recognize the caregiver’s accomplishments and grief, and refer them to services to assist with grief and psychosocial needs.
“Oncology nurses begin planning for survivorship at diagnosis, and the findings of this study support an equal need for bereavement care planning for caregivers of older adults with AML,” the researchers concluded in their study findings.
Poor E, Chan YN, Iadonisi K, Tan KR, Bryant AL. Exploring experiences of bereaved caregivers of older adult patients with acute myeloid leukemia. Clin J Oncol Nurs. 2022;26(2):135-139. doi:10.1188/22.CJON.135-139
This article originally appeared on Oncology Nurse Advisor