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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 (F.R.I.P.C research network)

Identifieur interne : 000048 ( France/Analysis ); précédent : 000047; suivant : 000049

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 (F.R.I.P.C research network)

Auteurs : Maité Garrouste-Orgeas [France] ; Cécile Flahault [Arabie saoudite] ; Edith Poulain ; Adrien Evin [France] ; Frédéric Guirimand [France] ; Virginie Fossez-Diaz ; Ségolène Perruchio ; Catherine Verlaine [France] ; Anne Vanbésien [France] ; Willeme Kaczmarek [France] ; Laurence Birkui De Francqueville [France] ; Emmanuel De Larivière ; Guillaume Bouquet [France] ; Laure Copel [France] ; Virginie Verliac ; Véronique Marché ; Carmen Mathias [France] ; Dominique Gracia [France] ; Alaa Mhalla [France] ; Véronique Michonneau-Gandon [France] ; Cécile Poupardin [France] ; Licia Touzet [France] ; Gaelle Ranchou [France] ; Virginie Guastella [France] ; Bruno Richard [France] ; Florent Bienfait [France] ; Marie Sonrier [France] ; Dominique Michel ; Stephane Ruckly [France] ; Sébastien Bailly [France] ; Jean-François Timsit [France]

Source :

RBID : Hal:hal-02526838

Descripteurs français

English descriptors

Abstract

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.


Url:
DOI: 10.1186/s12904-019-0496-4


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Hal:hal-02526838

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<country key="FR"></country>
</address>
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<org type="institution" xml:id="struct-303623" status="VALID">
<idno type="IdRef">026388278</idno>
<orgName>Institut National de la Santé et de la Recherche Médicale</orgName>
<orgName type="acronym">INSERM</orgName>
<desc>
<address>
<addrLine>101, rue de Tolbiac, 75013 Paris </addrLine>
<country key="FR"></country>
</address>
<ref type="url">http://www.inserm.fr</ref>
</desc>
</org>
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<orgName>Clinique de réanimation médicale</orgName>
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<tutelle active="#struct-300199" type="indirect">
<org type="institution" xml:id="struct-300199" status="VALID">
<orgName>Hôpital Michallon</orgName>
<desc>
<address>
<country key="FR"></country>
</address>
</desc>
</org>
</tutelle>
</tutelles>
</hal:affiliation>
<country>France</country>
<placeName>
<settlement type="city">Grenoble</settlement>
<region type="region" nuts="2">Auvergne-Rhône-Alpes</region>
<region type="old region" nuts="2">Rhône-Alpes</region>
</placeName>
<orgName type="university">Université Joseph Fourier</orgName>
<orgName type="institution" wicri:auto="newGroup">Université de Grenoble</orgName>
</affiliation>
</author>
</analytic>
<idno type="DOI">10.1186/s12904-019-0496-4</idno>
<series>
<title level="j">BMC Palliative Care</title>
<idno type="ISSN">1472-684X</idno>
<imprint>
<date type="datePub">2019-12</date>
</imprint>
</series>
</biblStruct>
</sourceDesc>
</fileDesc>
<profileDesc>
<textClass>
<keywords scheme="mix" xml:lang="en">
<term>Anxiety</term>
<term>Grief</term>
<term>Palliative care</term>
<term>Post-traumatic</term>
<term>Relatives</term>
<term>Stress disorders</term>
</keywords>
<keywords scheme="Wicri" type="topic" xml:lang="fr">
<term>Soins palliatifs</term>
</keywords>
</textClass>
</profileDesc>
</teiHeader>
<front>
<div type="abstract" xml:lang="en">
<p>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.</p>
</div>
</front>
</TEI>
<affiliations>
<list>
<country>
<li>Arabie saoudite</li>
<li>France</li>
</country>
<region>
<li>Auvergne-Rhône-Alpes</li>
<li>Rhône-Alpes</li>
<li>Île-de-France</li>
</region>
<settlement>
<li>Grenoble</li>
<li>Versailles</li>
</settlement>
<orgName>
<li>Université Joseph Fourier</li>
<li>Université de Grenoble</li>
<li>Université de Versailles-Saint-Quentin-en-Yvelines</li>
</orgName>
</list>
<tree>
<noCountry>
<name sortKey="De Lariviere, Emmanuel" sort="De Lariviere, Emmanuel" uniqKey="De Lariviere E" first="Emmanuel" last="De Larivière">Emmanuel De Larivière</name>
<name sortKey="Fossez Diaz, Virginie" sort="Fossez Diaz, Virginie" uniqKey="Fossez Diaz V" first="Virginie" last="Fossez-Diaz">Virginie Fossez-Diaz</name>
<name sortKey="Marche, Veronique" sort="Marche, Veronique" uniqKey="Marche V" first="Véronique" last="Marché">Véronique Marché</name>
<name sortKey="Michel, Dominique" sort="Michel, Dominique" uniqKey="Michel D" first="Dominique" last="Michel">Dominique Michel</name>
<name sortKey="Perruchio, Segolene" sort="Perruchio, Segolene" uniqKey="Perruchio S" first="Ségolène" last="Perruchio">Ségolène Perruchio</name>
<name sortKey="Poulain, Edith" sort="Poulain, Edith" uniqKey="Poulain E" first="Edith" last="Poulain">Edith Poulain</name>
<name sortKey="Verliac, Virginie" sort="Verliac, Virginie" uniqKey="Verliac V" first="Virginie" last="Verliac">Virginie Verliac</name>
</noCountry>
<country name="France">
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<name sortKey="Garrouste Orgeas, Maite" sort="Garrouste Orgeas, Maite" uniqKey="Garrouste Orgeas M" first="Maité" last="Garrouste-Orgeas">Maité Garrouste-Orgeas</name>
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<name sortKey="Bailly, Sebastien" sort="Bailly, Sebastien" uniqKey="Bailly S" first="Sébastien" last="Bailly">Sébastien Bailly</name>
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<name sortKey="Birkui De Francqueville, Laurence" sort="Birkui De Francqueville, Laurence" uniqKey="Birkui De Francqueville L" first="Laurence" last="Birkui De Francqueville">Laurence Birkui De Francqueville</name>
<name sortKey="Bouquet, Guillaume" sort="Bouquet, Guillaume" uniqKey="Bouquet G" first="Guillaume" last="Bouquet">Guillaume Bouquet</name>
<name sortKey="Copel, Laure" sort="Copel, Laure" uniqKey="Copel L" first="Laure" last="Copel">Laure Copel</name>
<name sortKey="Evin, Adrien" sort="Evin, Adrien" uniqKey="Evin A" first="Adrien" last="Evin">Adrien Evin</name>
<name sortKey="Gracia, Dominique" sort="Gracia, Dominique" uniqKey="Gracia D" first="Dominique" last="Gracia">Dominique Gracia</name>
<name sortKey="Guastella, Virginie" sort="Guastella, Virginie" uniqKey="Guastella V" first="Virginie" last="Guastella">Virginie Guastella</name>
<name sortKey="Guirimand, Frederic" sort="Guirimand, Frederic" uniqKey="Guirimand F" first="Frédéric" last="Guirimand">Frédéric Guirimand</name>
<name sortKey="Kaczmarek, Willeme" sort="Kaczmarek, Willeme" uniqKey="Kaczmarek W" first="Willeme" last="Kaczmarek">Willeme Kaczmarek</name>
<name sortKey="Mathias, Carmen" sort="Mathias, Carmen" uniqKey="Mathias C" first="Carmen" last="Mathias">Carmen Mathias</name>
<name sortKey="Mhalla, Alaa" sort="Mhalla, Alaa" uniqKey="Mhalla A" first="Alaa" last="Mhalla">Alaa Mhalla</name>
<name sortKey="Michonneau Gandon, Veronique" sort="Michonneau Gandon, Veronique" uniqKey="Michonneau Gandon V" first="Véronique" last="Michonneau-Gandon">Véronique Michonneau-Gandon</name>
<name sortKey="Poupardin, Cecile" sort="Poupardin, Cecile" uniqKey="Poupardin C" first="Cécile" last="Poupardin">Cécile Poupardin</name>
<name sortKey="Ranchou, Gaelle" sort="Ranchou, Gaelle" uniqKey="Ranchou G" first="Gaelle" last="Ranchou">Gaelle Ranchou</name>
<name sortKey="Richard, Bruno" sort="Richard, Bruno" uniqKey="Richard B" first="Bruno" last="Richard">Bruno Richard</name>
<name sortKey="Ruckly, Stephane" sort="Ruckly, Stephane" uniqKey="Ruckly S" first="Stephane" last="Ruckly">Stephane Ruckly</name>
<name sortKey="Sonrier, Marie" sort="Sonrier, Marie" uniqKey="Sonrier M" first="Marie" last="Sonrier">Marie Sonrier</name>
<name sortKey="Timsit, Jean Francois" sort="Timsit, Jean Francois" uniqKey="Timsit J" first="Jean-François" last="Timsit">Jean-François Timsit</name>
<name sortKey="Touzet, Licia" sort="Touzet, Licia" uniqKey="Touzet L" first="Licia" last="Touzet">Licia Touzet</name>
<name sortKey="Vanbesien, Anne" sort="Vanbesien, Anne" uniqKey="Vanbesien A" first="Anne" last="Vanbésien">Anne Vanbésien</name>
<name sortKey="Verlaine, Catherine" sort="Verlaine, Catherine" uniqKey="Verlaine C" first="Catherine" last="Verlaine">Catherine Verlaine</name>
</country>
<country name="Arabie saoudite">
<noRegion>
<name sortKey="Flahault, Cecile" sort="Flahault, Cecile" uniqKey="Flahault C" first="Cécile" last="Flahault">Cécile Flahault</name>
</noRegion>
</country>
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</affiliations>
</record>

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