The Fami-life study: protocol of a prospective observational multicenter mixed study of psychological consequences of grieving relatives in French palliative care units on behalf of the family research in palliative care (FRIPC research network)

被引:5
作者
Garrouste-Orgeas, Maite [1 ,2 ,3 ,4 ]
Flahault, Cecile [5 ]
Poulain, Edith [2 ]
Evin, Adrien [6 ]
Guirimand, Frederic [7 ,8 ]
Fossez-Diaz, Virginie [9 ]
Perruchio, Segolene [10 ]
Verlaine, Catherine [11 ]
Vanbesien, Anne [12 ]
Kaczmarek, Willeme [13 ]
de Francqueville, Laurence Birkui [14 ]
De Lariviere, Emmanuel [15 ]
Bouquet, Guillaume [16 ]
Copel, Laure [17 ]
Verliac, Virginie [18 ]
Marche, Veronique [19 ]
Mathias, Carmen [20 ]
Gracia, Dominique [21 ]
Mhalla, Alaa [22 ]
Michonneau-Gandon, Veronique [23 ]
Poupardin, Cecile [24 ]
Touzet, Licia [25 ]
Ranchou, Gaelle [26 ]
Guastella, Virginie [27 ]
Richard, Bruno [28 ]
Bienfait, Florent [29 ]
Sonrier, Marie [5 ]
Michel, Dominique [2 ]
Ruckly, Stephane [30 ]
Bailly, Sebastien [31 ]
Timsit, Jean-Francois [1 ,32 ]
机构
[1] Univ Paris, INSERM, IAME, F-75018 Paris, France
[2] Reuilly Diaconesses Fdn, Palliat Care Unit, Rueil Malmaison, France
[3] French British Hosp, Med Unit, Levallois Perret, France
[4] Hop Franco Britann, Serv Med Interne, 4 Rue Kleber, F-92300 Levallois Perret, France
[5] Paris Descartes Univ, Psychol Lab & Work Proc, Paris, France
[6] Univ Teaching Hosp, Palliat Care Unit, Nantes, France
[7] Jeanne Garnier Inst, Palliat Care Unit, Paris, France
[8] Versailles St Quentin Yvelines Univ, UFR Simone VEIL Sante, Versailles, France
[9] Bretonneau Hosp, Palliat Care Unit, Paris, France
[10] Rives de Seine Hosp, Palliat Care Unit, Puteaux La Defense, France
[11] Gen Hosp, Palliat Care Unit, Troyes, France
[12] Gen Hosp, Palliat Care Unit, Douai, France
[13] La Dracenie Hosp, Palliat Care Unit, Draguignan, France
[14] Compiegne Noyon Hosp, Palliat Care Unit, Compiegne, France
[15] Marie Galene Inst, Palliat Care Unit, Bordeaux Cauderan, France
[16] Tourcoing Gen Hosp, Palliat Care Unit, Tourcoing, France
[17] Diaconesses Croix St Simon Hosp, Palliat Care Unit, Paris, France
[18] Saintonge Gen Hosp, Palliat Care Unit, Saintes, France
[19] Cognacq Jay Hosp, Palliat Care Unit, Paris, France
[20] Mulhouse Sud Alsace Hosp Network, Palliat Care Unit, Mulhouse, France
[21] Gen Hosp, Palliat Care Unit, Salon De Provence, France
[22] Albert Chenevier Hosp, Palliat Care Unit, Creteil, France
[23] Castres Mazamet Gen Hosp, Palliat Care Unit, Castres, France
[24] Gen Hosp, Palliat Care Unit, Montfermeil, France
[25] Univ Teaching Hosp, Palliat Care Unit, Lille, France
[26] Gen Hosp, Palliat Care Unit, Perigueux, France
[27] Univ Teaching Hosp, Palliat Care Unit, Clermont Ferrand, France
[28] Univ Teaching Hosp, Palliat Care Unit, Montpellier, France
[29] Univ Teaching Hosp, Palliat Care Unit, Angers, France
[30] ICURESEARCH SA, Dept Biostat, Paris, France
[31] Grenoble Alpes Univ, CHU Grenoble Alpes, INSERM, HP2, Grenoble, France
[32] Hop Xavier Bichat, AP HP, Med & Infect Dis ICU MI2, F-75018 Paris, France
关键词
Palliative care; Stress disorders; Post-traumatic; Relatives; Anxiety; Grief; COMPLICATED GRIEF; HOSPITAL ANXIETY; PROLONGED GRIEF; CANCER-PATIENTS; BEREAVEMENT; DEPRESSION; CAREGIVERS; INDIVIDUALS; EXPERIENCE; DISTRESS;
D O I
10.1186/s12904-019-0496-4
中图分类号
R19 [保健组织与事业(卫生事业管理)];
学科分类号
摘要
Background: Grieving relatives can suffer from numerous consequences like anxiety, depression, post-traumatic stress disorder (PTSD) symptoms, and prolonged grief. This study aims to assess the psychological consequences of grieving relatives after patients' death in French palliative care units and their needs for support. Methods: This is a prospective observational multicenter mixed study. Relatives of adult patients with a neoplasia expected to be hospitalized more than 72 h in a palliative care unit for end-of-life issues will be included within 48 h after patient admission. End-of-life issues are defined by the physician at patient admission. Relatives who are not able to have a phone call at 6-months are excluded. The primary outcome is the incidence of prolonged grief reaction defined by an ICG (Inventory Complicate Grief) > 25 (0 best-76 worst) at 6 months after patient' death. Prespecified secondary outcomes are the risk factors of prolonged grief, anxiety and depression symptoms between day 3 and day 5 and at 6 months after patients' death based on an Hospital Anxiety and Depression score (range 0-42) > 8 for each subscale (minimal clinically important difference: 2.5), post-traumatic stress disorder symptoms 6 months after patient' death based on the Impact of Events Scale questionnaire (0 best-88 worst) score > 22, experience of relatives during palliative care based on the Fami-Life questionnaire, specifically built for the study. Between 6 and 12 months after the patient's death, a phone interview with relatives with prolonged grief reactions will be planned by a psychologist to understand the complex system of grief. It will be analyzed with the Interpretative Phenomenological Analysis. We planned to enroll 500 patients and their close relatives assuming a 25% prolonged grief rate and a 6-month follow-up available in 60% of relatives. Discussion: This study will be the first to report the psychological consequences of French relatives after a loss of a loved one in palliative care units. Evaluating relatives' experiences can provide instrumental insights for means of improving support for relatives and evaluation of bereavement programs.
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页数:8
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