The following is a summary of the “Home Hospice Family Caregivers’ Use of Audio Diaries and Reported Prevalence of Patient and Caregiver Symptoms,” published in the March 2023 issue of Pain and Symptom Management by Cloyes, et al.
Hospice care at home is especially important for patients with terminal cancer because family members can monitor their condition and report any changes in symptoms to hospice staff. As with any profession, providing hospice care can have an effect on your mental health. Determine whether or not home hospice carers are using prospective, longitudinal audio diaries to monitor patient and carer well-being; compare the effectiveness of patient-centered versus caregiver-centered diary prompts; Determine the prevalence of symptoms recorded by interactive voice response (IVR) and whether additional symptoms were recorded in diaries. Daily IVR calls were made to carers (N=102) to report patient, and carer symptoms, and carers could record diaries in which they responded to either patient- or caregiver-focused prompts.
To do this, we transcribed the diaries, sorted them into groups based on whether or not they revealed any new information, and compared the groups according to their respective prompts. Frequency counts and illustrative quotes summed up the content-coding for IVR-tracked symptoms and the inductive coding for additional symptoms. About 70% kept diaries (n=70), with 72.86% of those kept at more than equal to one diary devoted to recording new information (n=51). The typical recording lasted 53.00 seconds (SD=53.36). There were more entries in the diaries kept by participants in the group that responded to the caregiver-focused prompt (n=33; U=437.500, P=0.04) compared to the patient-focused group (n=37).
The pain was reported by 23.08% of patients, and 26.54% of patients reported feeling weak or tired. The most frequently reported feelings of anxiety or nervousness among carers were 47.51% and fatigue (22.10%), respectively. Increasing drowsiness or sleepiness in the patient (26.32%), breathing difficulties (24.32%), and negative carer emotions (such as guilt, resentment, anger, and sadness; 29.17%) were the most common additional symptoms. Audio diaries can be used as a practical means of conveying health issues and requesting help in the future. More attention in the future must be paid to using longitudinal data to create targeted and individualised programmes to assist carers.