title: When LVAD Patients Die: The Caregiver's Mourning.
abstract: Left ventricular assist devices (LVADs) have progressively evolved, particularly in the last 10 years, to serve patients affected by severe heart failure as a bridge to transplant or destination therapy. The survival rate and quality of life of pre- and postimplant patients, as well as caregivers' perceptions and distress, are under investigation by the scientific community. But what caregivers think and feel after the loss of their loved one has not so far been examined. We contacted 16 principal caregivers of deceased LVAD patients by telephone. They were asked to evaluate their experience with LVADs and were administered a specific questionnaire about their mourning, the Caregiver Mourning Questionnaire (CMQ), to evaluate their perceptions of the physical, emotional, and social support-related problems that they had experienced during the previous 3 months. Positive aspects reported by the caregivers were the patient's overall subjective well-being and increased survival. Negative aspects were the difficulty to manage infections and the driveline, and the incomplete autonomy of the patient. Half of the caregivers reported not being preadvised about many of the problems they would face. The CMQ revealed that numerous caregivers had health problems, difficulty in sleeping, eating disorders, lack of energy, and loneliness. Use of psychotropic drugs and regrets about how they assisted their loved one also emerged. In conclusion, caregivers of LVAD patients may experience complicated mourning. Our data support in particular the need for an early intervention of palliative care which could prevent or reduce complicated mourning.
authors.affiliation: Psychology Unit, Salvatore Maugeri Foundation, IRCCS, Veruno, NO, Italy.
authors.forename: Silvia
authors.initials: S
authors.lastname: Rossi Ferrario
authors.affiliation: Psychology Unit, Salvatore Maugeri Foundation, IRCCS, Veruno, NO, Italy.
authors.forename: Pierangela
authors.initials: P
authors.lastname: Omarini
authors.affiliation: Psychology Unit, Salvatore Maugeri Foundation, IRCCS, Veruno, NO, Italy.
authors.forename: Paola
authors.initials: P
authors.lastname: Cerutti
authors.affiliation: Psychology Unit, Salvatore Maugeri Foundation, IRCCS, Veruno, NO, Italy.
authors.forename: Giangluigi
authors.initials: G
authors.lastname: Balestroni
authors.affiliation: Psychology Unit, Salvatore Maugeri Foundation, IRCCS, Veruno, NO, Italy.
authors.forename: Giovanna
authors.initials: G
authors.lastname: Omarini
authors.affiliation: Division of Cardiology, Salvatore Maugeri Foundation, IRCCS, Veruno, NO, Italy.
authors.forename: Massimo
authors.initials: M
authors.lastname: Pistono
mesh_terms: D000328:Adult; D000368:Aged; D017028:Caregivers / Q000523:psychology*; D005260:Female; D006117:Grief; D006353:Heart-Assist Devices; D006801:Humans; D008297:Male; D008875:Middle Aged; D011788:Quality of Life; D012944:Social Support; D011795:Surveys and Questionnaires; D018487:Ventricular Dysfunction, Left / Q000628:therapy*
keywords: Caregiver; Left ventricular assist device; Mourning