Responsibilities and Reactions of Family Caregivers of Patients Dependent on Total Parenteral Nutrition at Home

Abstract

This prospective study assessed the caregiving responsibilities and reactions of family members who provide home care to a relative who is dependent on total parenteral nutrition (TPN). A short, semistructured interview based on the Roy adaptation model was used to gather data about the caregiving experiences of 20 relatives of adult TPN-dependent patients. Data were content analyzed, and frequently occurring themes identified. Results indicated that altered family responsibilities as well as negative and positive psychologic reactions to caregiving do occur. The interviews suggested that caregivers master TPN technology but make little use of assistance from extended family or professionals. Although depression and fatigue were reported as common, these family members felt capable and successful in their caregiving roles. Further longitudinal research with larger samples should allow for comparison of caregivers on demographic differences, stress, and other variables pertinent to managing complex home care.

Technology Dependence in Home Care: Impact on Patients and Their Family Caregivers

“…Caregiving is cognitively complex and requires the ability to maintain a demanding HPN schedule of lengthy infusions throughout the night with frequent awakenings from pump alarms and for blood glucose monitoring 56 , 57 . Caregivers of HPN and other technology‐dependent persons assemble, clean, maintain, and repair equipment 58 – 60 .…”

“…Preparedness can be improved by involving family caregivers before HPN patients are discharged from the hospital and by providing caregivers with access to timely and relevant caregiving information when the patients are at home. However, in a national survey of 178 HPN families, 48% of the caregivers reported that they had not received any home care education and had not been present at hospital discharge 56 . Furthermore, family caregivers report having little access to information that guides them with their daily technology care 64 , 69 .…”

Older adults receiving home enteral nutrition: enteral regimen, provider involvement, and health care outcomes

“…OLDER ADULTS RECEIVING HOME ENTERAL NUTRITION A cross-sectional design was used to study the HEN experience of older adults who depended on informal caregivers in the immediate postdischarge period, the time that Smith et al 27 described as the most challenging for families using similar home care technologies. That patients sought to prolong interviews with nutrition-related questions and requests for future visits underscores the taxing nature of this initial phase of HEN.…”

Technological Caregiving: A Qualitative Perspective

“…Four specific categories of challenges emerged from the data: financial, psychological, behavioral, and self-care. Congruent with other populations, caregiving was seen as financially burdensome (Aday & Wegener, 1988;Hazlett, 1989;Quint et al, 1990;Smith et al, 1993). One caregiver verbalized, "It's extremely hard.…”