Impact of informal care with multiple medical devices on caregiver burden: A cross-sectional national survey in Japan.

Abstract

Family caregivers provide long-term, home-based, informal medical care to patients with special healthcare needs. We examined whether informal care involving medical device use is associated with caregiver burden, considering potential risk variables as moderators. Data were collected from March to May 2019 through a Japanese public visiting care system. This system is offered to patients with severe chronic or intractable disease or impairment. After contacting government-certified offices that provide visiting care systems, the offices that agreed to participate invited dyads of patients and caregivers to complete our questionnaire. To focus on new parameters other than the caregiver factor that had been clarified previously, we aimed to analyse the data from patient-caregiver dyads. Using a questionnaire-based cross-sectional design, we asked participants about caregiver and patient characteristics, care types, and caregiver burden using the Zarit Caregiver Burden Interview. Logistic regression analyses were conducted to test the association between caregiver burden and informal medical care. Data from 371 complete patient-caregiver dyads were analysed; 49.3% showed high caregiver burden, and 40.4% were administering at least one informal medical care procedure. Univariate analyses indicated a relationship between high caregiver burden among caregivers who slept less, provided care for longer periods daily, performed medical care procedures and cohabited with patients. Importantly, logistic regression analyses indicated a significant relationship between high caregiver burden and care involving multiple medical procedures (i.e. 4-6 procedures with medical devices; adjusted odds ratio (AOR)=2.03, 95% confidence intervals (95% CI)=[1.01, 4.09]). In propensity-matched participants (n=314), results continued to show that multiple medical care procedures were significantly related to high caregiver burden (AOR=2.19, 95% CI [1.14-4.22]). The effects of non-medical informal care on caregiver burden were moderate. This result suggests that more intensive interventions are required for patients with multiple medical care needs to reduce caregiver burden.