Kathi Mooney, PhD, RN, FAAN
Adult children caring for their parents receiving hospice care at home face particular stressors, and a new study has shown that a novel approach using an automated system of remote monitoring and coaching can help.
The study, conducted by researchers at the University of Utah, its College of Nursing, and Oregon Health & Science University, was presented at the 2015 Palliative Care in Oncology Symposium held October 9-10 in Boston.
SymptomCare@Home (SCH) is a telephone-based, automated, interactive voice response system designed for remote symptom monitoring and management. It involves: (1) daily automated monitoring of the presence and severity of 11 symptoms commonly experienced by patient receiving hospice; (2) automated caregiver coaching for care of the patients as well as self-care; and (3) automated alerting of the hospice nurse of poorly controlled symptoms.
Kathi Mooney, PhD, RN, FAAN, distinguished professor at the University of Utah, College of Nursing, who presented the findings, noted that SCH was adapted for caregivers from a system developed to monitor symptoms of patients and reported at last year’s palliative care symposium.
This prospective, randomized controlled trial, involved 97 adult children of caregivers (ACCs)—the majority of whom were daughters aged 50-51 years. Fifty-one ACCs received the SCH intervention and 46 had usual care. Mooney noted that while much focus is placed on the comorbidities of spousal caregivers, her study found that more than 60% of ACCs reported at least one comorbidity, and about half were also trying to continue to work.
All ACCs were asked to report their symptoms daily, such as disturbed sleep, depressed mood, anxiety and disruption of normal activities, rating them on a score of 0-10. SCH takes approximately 7 minutes each day, and when coaching is added, it takes an additional minute, Mooney explained.
The researchers found that ACCs who participated in the SCH had significantly fewer days of moderate-severe symptoms overall for each individual symptom (all P
< .001). There was also a trend to work more scheduled days among SCH caregivers who were employed (80%), compared with 68% in the usual care group. ACCs who had the support of the SCH intervention also were less depressed following death of the parent than those in the usual care arm (11.94 vs 18.04), a significant finding because the usual care group’s depression scores were at a clinically actionable level, the study authors noted.
“Overall, we found that the SymptomCare@Home system significantly reduced moderate-to-severe symptom days over usual hospice care,” said Mooney. She added that this was true for each individual symptom.
“A family-centric intervention that is effective across cancers can improve on optimal end-of-life care, offered at the point in time when people need support, and focused on their specific needs.”
“One of the things we found was that there was a reciprocal relationship, as caregiver symptoms improved, so did those of patients,” concluded Mooney.
Mooney K, Berry P, Biaz J, et al. The well-being of adult children while caring for a parent in home hospice: Evaluation of an automated remote monitoring and coaching system. J Clin Oncol. 2015;33(suppl 29S; abstr 222).