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Retour avec Marco Araneda et Marion Koeltz sur la gen\u00e8se de leur projet, comment l’\u00e9quipe s’est form\u00e9e et l’impact de cette recherche pour les patients.<\/p>\n
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C\u2019est une exp\u00e9rience clinique dans un service de soins de suite en h\u00e9matologie (\u00e0 l\u2019h\u00f4pital Jean Jaur\u00e8s) qui nous a guid\u00e9s vers la th\u00e9matique de ce projet de recherche. Lorsque les patients ne sont pas en mesure de rentrer chez eux apr\u00e8s une hospitalisation en service d\u2019h\u00e9matologie, ils sont adress\u00e9s en service de soins de suite, o\u00f9 la surveillance m\u00e9dicale continue, et o\u00f9 l\u2019accent est mis sur la r\u00e9cup\u00e9ration de leurs capacit\u00e9s physiques, avec la possibilit\u00e9 d\u2019avoir jusqu\u2019\u00e0 deux s\u00e9ances de kin\u00e9sith\u00e9rapie et r\u00e9\u00e9ducation par jour. La rencontre clinique avec ces patients nous a permis de percevoir des probl\u00e9matiques concernant la p\u00e9riode qui suit l\u2019hospitalisation: se sentir ni malade ni gu\u00e9ri, les difficult\u00e9s \u00e0 se projeter dans l\u2019avenir avec une condition physique qui s\u2019est beaucoup d\u00e9grad\u00e9e, l\u2019incertitude quant au fait de pouvoir reprendre un jour sa vie \u00ab\u00a0d\u2019avant\u00a0\u00bb.<\/p>\n
Cela a commenc\u00e9 par un travail d\u2019immersion \u00e0 l\u2019h\u00f4pital Saint-Louis, dont le service de greffe en h\u00e9matologie est une r\u00e9f\u00e9rence, qui a permis un acc\u00e8s \u00e0 des consultations m\u00e9dicales et infirmi\u00e8res pr\u00e9-greffe, et au suivi les psychologues du service de greffe dans leur travail. Nous avons \u00e9t\u00e9 tr\u00e8s bien accueillis par les soignants, qui nous ont permis de bien comprendre comment se d\u00e9roulait le parcours de soins pour les patients avant, pendant et apr\u00e8s la greffe. Nous avons \u00e9galement rencontr\u00e9 l\u2019association de patients des anciens greff\u00e9s de l\u2019h\u00f4pital Saint-Louis, qui a \u00e9t\u00e9 tr\u00e8s disponible. C\u2019est cette immersion sur le terrain qui nous a permis de penser un protocole de recherche et de nous assurer qu\u2019il soit r\u00e9aliste, adapt\u00e9 et respectueux des patients comme des soignants.<\/p>\n
L\u2019un des \u00e9l\u00e9ments importants dans cette recherche, c\u2019est que nous n\u2019avions pas d\u2019hypoth\u00e8ses pr\u00e9cises sur les processus qui pourraient \u00eatre identifi\u00e9s, car nous avons recours \u00e0 une m\u00e9thodologie qualitative inductive. Nous commen\u00e7ons chaque entretien par une question sur le v\u00e9cu et le ressenti des participants, mais l\u2019entretien est conduit de mani\u00e8re tr\u00e8s ouverte. Ceci a permis de recueillir un mat\u00e9riau riche en ce qui concerne la dimension psychique de la travers\u00e9e de la maladie et des traitements, car celle-ci n\u2019est pas saisissable uniquement dans les propos explicites. Ainsi, donner l\u2019occasion aux patients de s\u2019exprimer en guidant le moins possible leur parole permet de faire appara\u00eetre la complexit\u00e9 des processus psychiques et d\u2019appr\u00e9hender de mani\u00e8re fine ce qui a trait \u00e0 la subjectivation de leur exp\u00e9rience\u00a0: il peut s\u2019agir, par exemple, de construire une repr\u00e9sentation de soi confront\u00e9 \u00e0 la maladie, mais cela peut \u00e9galement impliquer le lien \u00e0 l\u2019autre.<\/p>\n
Les recherches qualitatives longitudinales sont rares, et pourtant elles permettent d\u2019apporter un autre \u00e9clairage n\u00e9cessaire et compl\u00e9mentaire des \u00e9tudes transversales. La prise en compte de la dimension temporelle dans l\u2019exp\u00e9rience de la maladie et des traitements nous semble essentielle. Premi\u00e8rement, cela peut bien s\u00fbr permettre de mettre en lumi\u00e8re des \u00e9volutions au cours du temps. Mais cela permet \u00e9galement d\u2019envisager l\u2019exp\u00e9rience de la maladie et des soins comme une exp\u00e9rience globale. En l\u2019occurrence, nous rencontrons les patients \u00e0 trois reprises\u00a0: avant la greffe, un mois apr\u00e8s leur sortie d\u2019hospitalisation, et trois mois apr\u00e8s leur hospitalisation. \u00c9tudier le v\u00e9cu des patients apr\u00e8s la greffe prend une toute autre dimension lorsqu\u2019on peut le relier au v\u00e9cu des patients avant la greffe, car cela permet de ne pas segmenter de mani\u00e8re arbitraire le v\u00e9cu de ces patients. Au contraire, l\u2019exp\u00e9rience de l\u2019apr\u00e8s-greffe s\u2019ancre en r\u00e9alit\u00e9 dans l\u2019avant-greffe, car la subjectivation d\u2019une exp\u00e9rience de soin peut d\u00e9j\u00e0 \u00eatre pr\u00e9sente avant que le patient ne fasse concr\u00e8tement l\u2019exp\u00e9rience de ce soin.<\/p>\n
Nous comptons faire une synth\u00e8se des r\u00e9sultats de notre recherche, dans un langage visant un public large, non-professionnel, et transmettre cette synth\u00e8se \u00e0 la fois aux participants, aux soignants et \u00e0 l\u2019association de patients, et pr\u00e9voir des possibilit\u00e9s d\u2019\u00e9change avec eux. Sans que cela prenne n\u00e9cessairement la forme de recommandations, nous pensons que proposer une synth\u00e8se de nos analyses est une mani\u00e8re de rendre possibles d\u2019autres modes de compr\u00e9hension de l\u2019exp\u00e9rience des patients. Cela peut avoir un impact sur la mani\u00e8re dont les soignants per\u00e7oivent l\u2019exp\u00e9rience des patients, et sur la mani\u00e8re dont les patients per\u00e7oivent leur propre exp\u00e9rience. Nous pensons qu\u2019un des enjeux des recherches interdisciplinaires est de cr\u00e9er un mat\u00e9riau accessible comme base d\u2019\u00e9changes entre des publics diff\u00e9rents.<\/p>\n
[\/et_pb_text][\/et_pb_column][et_pb_column type=\u00a0\u00bb1_4″][et_pb_button admin_label=\u00a0\u00bbEn savoir plus sur le projet\u00a0\u00bb button_url=\u00a0\u00bbhttps:\/\/wordpress-test.app.u-pariscite.fr\/la-personne-en-medecine\/gresub\/\u00a0\u00bb button_text=\u00a0\u00bbEn savoir plus sur le projet\u00a0\u00bb button_alignment=\u00a0\u00bbleft\u00a0\u00bb _builder_version=\u00a0\u00bb3.22.1″ custom_button=\u00a0\u00bbon\u00a0\u00bb button_text_color=\u00a0\u00bb#ffffff\u00a0\u00bb button_bg_color=\u00a0\u00bb#ee8a88″ button_border_width=\u00a0\u00bb2″ button_border_color=\u00a0\u00bb#ee8a88″ button_border_radius=\u00a0\u00bb26″ button_icon=\u00a0\u00bb%%20%%\u00a0\u00bb button_icon_color=\u00a0\u00bb#ffffff\u00a0\u00bb button_on_hover=\u00a0\u00bboff\u00a0\u00bb background_layout=\u00a0\u00bbdark\u00a0\u00bb custom_css_after=\u00a0\u00bbmargin-left: 0!important;\u00a0\u00bb saved_tabs=\u00a0\u00bball\u00a0\u00bb background_layout__hover_enabled=\u00a0\u00bbon\u00a0\u00bb background_layout__hover=\u00a0\u00bblight\u00a0\u00bb button_bg_color__hover_enabled=\u00a0\u00bbon\u00a0\u00bb button_bg_color__hover=\u00a0\u00bb#ffffff\u00a0\u00bb button_icon_color__hover_enabled=\u00a0\u00bbon\u00a0\u00bb button_icon_color__hover=\u00a0\u00bb#ee8a88″ button_text_color__hover_enabled=\u00a0\u00bbon\u00a0\u00bb button_text_color__hover=\u00a0\u00bb#ee8a88″ custom_css_after__hover_enabled=\u00a0\u00bbon\u00a0\u00bb custom_css_after__hover=\u00a0\u00bbmargin-left: 0!important;\u00a0\u00bb button_text_shadow_horizontal_length=\u00a0\u00bbbutton_text_shadow_style,%91object Object%93″ button_text_shadow_vertical_length=\u00a0\u00bbbutton_text_shadow_style,%91object Object%93″ button_text_shadow_blur_strength=\u00a0\u00bbbutton_text_shadow_style,%91object Object%93″ z_index_tablet=\u00a0\u00bb500″ \/][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section bb_built=\u00a0\u00bb1″ specialty=\u00a0\u00bboff\u00a0\u00bb _builder_version=\u00a0\u00bb3.21″ custom_padding=\u00a0\u00bb0px||0px|\u00a0\u00bb prev_background_color=\u00a0\u00bb#000000″ inner_width=\u00a0\u00bbauto\u00a0\u00bb inner_max_width=\u00a0\u00bbnone\u00a0\u00bb][et_pb_row _builder_version=\u00a0\u00bb3.19.11″ width=\u00a0\u00bb80%\u00a0\u00bb max_width=\u00a0\u00bb1080px\u00a0\u00bb][et_pb_column type=\u00a0\u00bb4_4″][et_pb_text admin_label=\u00a0\u00bb\u00c0 lire aussi\u00a0\u00bb _builder_version=\u00a0\u00bb3.21″]<\/p>\n
[\/et_pb_text][et_pb_blog _builder_version=\u00a0\u00bb3.21″ posts_number=\u00a0\u00bb4″ include_categories=\u00a0\u00bb13″ show_author=\u00a0\u00bboff\u00a0\u00bb show_date=\u00a0\u00bboff\u00a0\u00bb show_pagination=\u00a0\u00bboff\u00a0\u00bb border_width_bottom_fullwidth=\u00a0\u00bb1px\u00a0\u00bb border_color_bottom_fullwidth=\u00a0\u00bbrgba(51,51,51,0.18)\u00a0\u00bb custom_padding=\u00a0\u00bb||50px|\u00a0\u00bb module_id=\u00a0\u00bbpage_type_blog\u00a0\u00bb header_level=\u00a0\u00bbh4″ \/][\/et_pb_column][\/et_pb_row][\/et_pb_section]<\/p>\n","protected":false},"excerpt":{"rendered":"
Retour avec Marco Araneda et Marion Koeltz sur la gen\u00e8se de leur projet, comment l’\u00e9quipe s’est form\u00e9e et l’impact de cette recherche pour les patients. <\/p>\n