VAD Caregiving at Home: “Our Roles Have Changed Here”

Abstract

Persons living with a ventricular assist device (VAD) and their caregivers experience unique stresses however, caregiver experience is inconsistently assessed, so little is known about caregiver contributions to disease and device management, or the effects they experience. The purpose of this mixed methods study is to describe the context of VAD caregiving and explore burdensome elements of caregiving. We recruited VAD patients and caregivers (N=14, 7 dyads) who had been implanted within the past 3-12 months, or had experienced a recent hospital-to-home transition (within 60 days). We administered surveys and conducted semi-structured qualitative interviews from patient and caregiver perspectives. Analysis includes descriptive statistics and thematic analysis of interviews. Mean age of VAD patients and caregivers was 55.7 ± 14.2 years and 53.1± 15.8 years, respectively. Most patients were male (75%) and most caregivers were female (87.5%), and most caregiver-patient dyads were spousal (85.7%). Mean caregiver burden (short-form Zarit Burden Interview) score was 12.4 ± 4.4. From qualitative interviews, the areas of the home most commonly modified to support patient needs or make caregiving tasks easier were bathrooms (i.e. railings, shower chairs) and the bedroom (sleeping arrangements). The most common caregiving tasks reported were 1)"monitoring" (i.e. for complications, anticipating needs), 2) managing medications, equipment and appointments, 3) helping with bathing, and 4) changing the driveline dressing. Even when caregivers reported low burden quantitatively, caregivers expressed that they felt overwhelmed with the complexity and intensity of caregiving responsibilities on themselves and their relationships, like a "ball and chain" or like a "cascade that effects everybody." These preliminary findings provide new data on the changes caregivers and patients make to their home environments, and elucidate a potential mismatch between quantitative and qualitative assessments of care burden. Both of these findings require further investigation. Resources to support home changes and living at home following VAD implant may be insufficient to address needs. It may also be helpful to implement more frequent, formal evaluation of caregiving needs and burden using additional instruments that capture elements of caregiving that are unique to the VAD context.