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.
IntroduzioneIn passato si è sempre considerato la malattia cardiovascolare, soprattutto quella ischemica, un problema principalmente maschile. Questa convinzione era generata dalla constatazione che l'infarto si manifestava più precocemente nell'uomo che nella donna [1]. La ricerca scientifica, proprio per questo motivo, ha limitato, escluso o sottorappresentato per molto tempo le donne nei vari trial clinici, creando così un netto divario nelle informazioni scientifiche tra generi [2,3,4,5,6,7,8].Solo negli ultimi anni sono stati condotti studi per individuare, nella popolazione femminile, quelle componenti psicologiche e di stile di vita che possono agire come concause nell'eziopatogenesi o nell'evoluzione delle patologie cardiovascolari. È recente, quindi, l'attenzione alle caratteristiche personologiche (ansia, depressione), alla gestione dello stress (lavorativo e familiare) e ai vari aspetti comportamentali a rischio quali: fumo, alimentazione scorretta, inattività fisica.Dalla bibliografica una conferma evidente riguarda sicuramente la relazione diretta fra depressione e cardiopatia ischemica nelle donne [9,10,11,12,13], ma anche l'ansia [13], soprattutto nelle donne di mezza età, è in grado di incrementare il rischio di morte per tutte le cause cardiache del 77% [14]. Mentre un atteggiamento di ottimismo nelle donne risulta essere un fattore protettivo riducendo del 16% il rischio di infarto miocardio (IM), del 30% per mortalità relativa a cardiopatia ischemica (CHD) e del 24% per mortalità relativa a malattie cardiovascolari (MCV) [15].Lo stress è un'altra componente che è stata spesso oggetto di ricerca nelle donne con MCV, questo proprio per le problematiche relative alla funzioni della donna nella nostra società, dove spesso si trova costretta nel ruolo di lavoratrice fuori casa e di lavoratrice all'interno della famiglia (casa, figli, ecc). Si riscontrano in letteratura diversi lavori che sottolineano come lo stress nelle donne giuochi un ruolo importante come fattore di rischio di MCV, in grado di aumentare la percentuale di rischio del 40% [13, Results: The percentage of women with considerable value of Vital Exhaustion was very high (67.7%). Moreover, the group of women with higher Vital Exhaustion showed more dysfunctional habits (smoking, poor physical activity, incorrect diet) and more referred psychological problems as well as job and/or family distress and insomnia. 207 women (24.2%) of the sample belonged to economically active population; 136 (69%) of these women presented a high value of VE and 61 (31%) a low one. Among the employed women, 24% of the group with high VE value reported to be unsatisfied, while the same condition lowered at 9.6% in the group with low VE value (p=.004); moreover, 41.7% versus 18.5% (p=.000) described their working life as a source of tension.Conclusions: Considering a sample of female cardiac patients, this study shows that the construct of Vital Exhaustion is particularly present. It also appears that the construct of Vital Exhaustion can be interpreted as ...
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