The following is a summary of “Home Hospice Family Caregivers’ Use of Audio Diaries and Reported Prevalence of Patient and Caregiver Symptoms,” published in the MARCH 2023 issue of Pain Management by Cloyes, et al.
Family caregivers must report symptoms to the hospice team for further evaluation to provide advanced cancer patients with at-home hospice care. Personal well-being may be impacted by providing hospice care. For a study, researchers sought to evaluate the use of prospective, longitudinal audio diaries by home hospice caregivers in monitoring patient and caregiver well-being, examine the effectiveness of diary prompts that are patient- or caregiver-focused, and look at the frequency of interactive voice response (IVR)-tracked symptoms and see if diaries revealed any additional symptoms.
During daily IVR calls, caregivers (N=102) were invited to report patient and caregiver symptoms. They also could record optional diaries in response to patient- or caregiver-focused prompts. Transcribed diaries were categorized by new information present or absent and compared according to prompt type. Frequency counts and concrete examples were used to summarize the content coding for IVR-tracked symptoms and inductive coding for different symptoms.
About 69% of participants (n = 70) kept diaries, and of these, 72.86% (n = 51) recorded ≥ one diary with new material. 53.00 seconds (SD = 53.36) was the average length of the recording. Those who responded to the prompt with a caregiver-focused attitude (n=33; U=437.500, P=0.04) kept more journals than those with a patient-focused attitude (n=37; P=0.04). The two most common IVR-tracked symptoms were caregiver anxiety/nervousness (47.51%) and exhaustion (22.10%), with patient weariness/weakness (26.54% of symptoms mentioned and pain (23.08%) coming in second and third. The most common additional symptoms were the patient’s increasing drowsiness or inability to sleep (26.32%), respiratory problems (24.32%), and negative caregiver emotions (such as guilt, resentment, and anger; 29.17%).
Expressing symptoms and support requirements effectively is through prospective audio diaries. The upcoming research will focus on utilizing longitudinal data to create targeted, personalized caregiver support interventions.