{"id":4986,"date":"2018-06-06T10:40:59","date_gmt":"2018-06-06T08:40:59","guid":{"rendered":"http:\/\/www.aninath.com\/coneix-nos\/objectius"},"modified":"2019-02-25T10:13:40","modified_gmt":"2019-02-25T09:13:40","slug":"objectius","status":"publish","type":"page","link":"https:\/\/www.aninath.com\/ca\/coneix-nos\/objectius","title":{"rendered":"Objectius"},"content":{"rendered":"<div class=\"wpb-content-wrapper\"><p>[vc_row css_animation=\u00bb\u00bb row_type=\u00bbrow\u00bb use_row_as_full_screen_section=\u00bbno\u00bb type=\u00bbfull_width\u00bb angled_section=\u00bbno\u00bb text_align=\u00bbleft\u00bb background_image_as_pattern=\u00bbwithout_pattern\u00bb css=\u00bb.vc_custom_1528958146100{padding-top: 30px !important;padding-right: 60px !important;}\u00bb z_index=\u00bb\u00bb][vc_column][vc_column_text]<\/p>\n<h3>Objectiu General<\/h3>\n<p>[\/vc_column_text][vc_empty_space height=\u00bb20&#8243;][vc_column_text]<\/p>\n<h2>ANiNATH t\u00e9 com a finalitat principal\u00a0<span style=\"color: #21ab64;\">donar suport\u00a0<\/span>i\u00a0<span style=\"color: #21ab64;\">millorar l&#8217;experi\u00e8ncia\u00a0<\/span>del trasplantament de fetge i la vida que tindran el nen i la seva fam\u00edlia abans, durant i despr\u00e9s de tot el proc\u00e9s.<\/h2>\n<p>[\/vc_column_text][vc_empty_space height=\u00bb50&#8243;][vc_column_text css=\u00bb.vc_custom_1528958175103{padding-bottom: 20px !important;}\u00bb]<\/p>\n<h3>Objectius espec\u00edfics<\/h3>\n<p>[\/vc_column_text][vc_column_text]<strong>1.<\/strong> Ser la veu de la comunitat del trasplantament hep\u00e0tic pedi\u00e0tric de l&#8217;Hospital Vall d&#8217;Hebron de Barcelona, \u200b\u200badvocant a favor de les millores en totes les \u00e0rees priorit\u00e0ries.<\/p>\n<p>&nbsp;<\/p>\n<p><strong>2.<\/strong> Representar tots els nens i nenes trasplantats de fetge a l&#8217;Hospital Vall d&#8217;Hebron i les seves fam\u00edlies independentment del seu origen, religi\u00f3, circumst\u00e0ncies individuals o nivell socioecon\u00f2mic.[\/vc_column_text][vc_empty_space height=\u00bb50&#8243;][vc_column_text css=\u00bb.vc_custom_1528958624043{padding-bottom: 20px !important;}\u00bb]<\/p>\n<h3>\u00c0rees priorit\u00e0ries<\/h3>\n<p>[\/vc_column_text][vc_column_text css=\u00bb.vc_custom_1537202047258{padding-bottom: 20px !important;}\u00bb]<\/p>\n<h4><strong>1. Serveis sociosanitaris<\/strong><\/h4>\n<p>[\/vc_column_text]<div class=\"qode-accordion-holder clearfix qode-toggle qode-initial \">\n\t<h5 class=\"clearfix qode-title-holder\">\n<span class=\"qode-tab-title\">\n\t    <span class=\"qode-tab-title-inner\">\n        1.1. Suport i acompanyament a les fam\u00edlies    <\/span>\n<\/span>\n<span class=\"qode-accordion-mark\">\n    <span class=\"qode-accordion-mark-icon\">\n        <span class=\"icon_plus\"><\/span>\n        <span class=\"icon_minus-06\"><\/span>\n    <\/span>\n<\/span>\n<\/h5>\n<div  class=\"qode-accordion-content \" >\n    <div class=\"qode-accordion-content-inner\">\n        [vc_column_text]A trav\u00e9s del nostre <strong>equip de mares i pares, i donants vius donem suport a altres fam\u00edlies<\/strong> amb nens trasplantats de fetge o en vies de trasplantament des de la nostra pr\u00f2pia experi\u00e8ncia. Comuniquem el que cal esperar des del punt de vista del pacient i de la fam\u00edlia.<\/p>\n<p>&nbsp;<\/p>\n<p>Disposem de <strong>recursos digitals i en paper<\/strong> (guies) i un <strong>programa de mentors<\/strong> <em>(Buddy program)<\/em> que s&#8217;afegeixen a les trobades presencials i els contactes telef\u00f2nics amb les fam\u00edlies.<\/p>\n<p>&nbsp;<\/p>\n<p><strong>Assessorem i donem suport<\/strong> a les fam\u00edlies en la tramitaci\u00f3 de la sol\u00b7licitud d&#8217;ajudes econ\u00f2miques, en el coneixement dels seus drets laborals (p.ex. baixes), cobertures legals dels pares amb nens amb malalties cr\u00f2niques, etc.[\/vc_column_text]    <\/div>\n<\/div><h5 class=\"clearfix qode-title-holder\">\n<span class=\"qode-tab-title\">\n\t    <span class=\"qode-tab-title-inner\">\n        1.2. Hospitalitzaci\u00f3    <\/span>\n<\/span>\n<span class=\"qode-accordion-mark\">\n    <span class=\"qode-accordion-mark-icon\">\n        <span class=\"icon_plus\"><\/span>\n        <span class=\"icon_minus-06\"><\/span>\n    <\/span>\n<\/span>\n<\/h5>\n<div  class=\"qode-accordion-content \" >\n    <div class=\"qode-accordion-content-inner\">\n        [vc_column_text]Quan un nen ha d&#8217;ingressar a l&#8217;hospital, mai \u00e9s f\u00e0cil per a ell ni per a la seva fam\u00edlia. Passar el temps a l&#8217;hospital pot ser estressant i dur per a tots. Fins i tot les petites coses, com una butaca que es converteix en llit perqu\u00e8 els pares, mares o altres familiars que dia a dia han de dormir a l&#8217;hospital amb el seu fill o filla, poden marcar una gran difer\u00e8ncia.<\/p>\n<p>&nbsp;<\/p>\n<p>L&#8217;equip de ANiNATH, juntament amb el personal de l&#8217;Hospital Vall d&#8217;Hebron de Barcelona i amb les fam\u00edlies dels nens i nenes trasplantats de fetge o en vies de ser-ho, estem treballant per fer-ho m\u00e9s f\u00e0cil. Volem ajudar a <strong>reduir l&#8217;estr\u00e8s i, en la mesura del possible, millorar l&#8217;experi\u00e8ncia que suposa l&#8217;ingr\u00e9s hospitalari<\/strong> per al nen i la seva fam\u00edlia.<\/p>\n<p>&nbsp;<\/p>\n<p>A trav\u00e9s de trobades amb professionals d&#8217;Infermeria (ja siguin del propi Hospital, de la Facultat d&#8217;Infermeria o del Col\u00b7legi Professional) i amb altres col\u00b7lectius (Pacients, autoritats sanit\u00e0ries, &#8230;) donem a con\u00e8ixer la necessitat de generalitzar les millores que proposem, entre elles el fet de recon\u00e8ixer que els <strong>pacients pedi\u00e0trics cr\u00f2nics tenen necessitats espec\u00edfiques<\/strong> que s&#8217;han d&#8217;abordar des del sistema hospitalari.[\/vc_column_text]    <\/div>\n<\/div><h5 class=\"clearfix qode-title-holder\">\n<span class=\"qode-tab-title\">\n\t    <span class=\"qode-tab-title-inner\">\n        1.3. Revisions peri\u00f2diques i gesti\u00f3 del dia a dia    <\/span>\n<\/span>\n<span class=\"qode-accordion-mark\">\n    <span class=\"qode-accordion-mark-icon\">\n        <span class=\"icon_plus\"><\/span>\n        <span class=\"icon_minus-06\"><\/span>\n    <\/span>\n<\/span>\n<\/h5>\n<div  class=\"qode-accordion-content \" >\n    <div class=\"qode-accordion-content-inner\">\n        [vc_column_text]Les revisions peri\u00f2diques s\u00f3n el dia a dia dels nens i nenes trasplantats. Per aix\u00f2, vam identificar aspectes que ajudaran a <strong>simplificar el proc\u00e9s<\/strong> per aconseguir m\u00e9s efici\u00e8ncia a trav\u00e9s de la Infermera Gestora de Casos responsable de coordinar-ho.<\/p>\n<p>&nbsp;<\/p>\n<p>Vetllem per que es <strong>redueixi l&#8217;impacte financer<\/strong> que el trasplantament pot tenir en les fam\u00edlies. Per aix\u00f2, ens assegurem que aspectes com ara la subvenci\u00f3 de certs medicaments per part del CatSalut arriba a totes les fam\u00edlies dels nens i nenes trasplantats hep\u00e0tics.[\/vc_column_text]    <\/div>\n<\/div><h5 class=\"clearfix qode-title-holder\">\n<span class=\"qode-tab-title\">\n\t    <span class=\"qode-tab-title-inner\">\n        1.4. Adolesc\u00e8ncia i transfer\u00e8ncia a adult    <\/span>\n<\/span>\n<span class=\"qode-accordion-mark\">\n    <span class=\"qode-accordion-mark-icon\">\n        <span class=\"icon_plus\"><\/span>\n        <span class=\"icon_minus-06\"><\/span>\n    <\/span>\n<\/span>\n<\/h5>\n<div  class=\"qode-accordion-content \" >\n    <div class=\"qode-accordion-content-inner\">\n        [vc_column_text]Com ja sabem, l&#8217;adolesc\u00e8ncia \u00e9s una etapa plena d&#8217;alts i baixos en la qual es produeixen canvis biol\u00f2gics, psicol\u00f2gics i socials molt importants.<\/p>\n<p>&nbsp;<\/p>\n<p>Per a un adolescent trasplantat, aix\u00f2 pot ser encara m\u00e9s complicat. Els nens trasplantats han de prendre medicaments anti-rebuig cada dia de la seva vida i han de seguir unes determinades pautes de vida saludable. \u00c9s per aix\u00f2 que des d\u2019ANiNATH volem assegurar-nos que els joves que entren en aquesta etapa disposen del servei d&#8217;un <strong>Psic\u00f2leg<\/strong> i d&#8217;un <strong>Treballador Social<\/strong> (entre d&#8217;altres professionals) sempre que ho necessitin.<\/p>\n<p>&nbsp;<\/p>\n<p>A m\u00e9s, en el futur, quan disposem dels recursos necessaris, crearem un <strong>programa de <em>coaching<\/em> amb joves trasplantats majors<\/strong> lligat al programa de mentors per oferir suport basant-se en la seva pr\u00f2pia experi\u00e8ncia. Els mentors insisteixen en la import\u00e0ncia de <strong>l&#8217;adher\u00e8ncia al tractament<\/strong> i del <strong>manteniment d&#8217;h\u00e0bits de vida saludables<\/strong>.<\/p>\n<p>&nbsp;<\/p>\n<p>Un altre dels nostres objectius \u00e9s aconseguir que un cop complerts els 18 anys, coincidint amb l&#8217;entrada en l&#8217;edat adulta, els joves trasplantats de fetge puguin mantenir el <strong>seguiment per part d&#8217;una gestora de Casos<\/strong>.[\/vc_column_text]    <\/div>\n<\/div><h5 class=\"clearfix qode-title-holder\">\n<span class=\"qode-tab-title\">\n\t    <span class=\"qode-tab-title-inner\">\n        1.5. Donaci\u00f3 de fetge    <\/span>\n<\/span>\n<span class=\"qode-accordion-mark\">\n    <span class=\"qode-accordion-mark-icon\">\n        <span class=\"icon_plus\"><\/span>\n        <span class=\"icon_minus-06\"><\/span>\n    <\/span>\n<\/span>\n<\/h5>\n<div  class=\"qode-accordion-content \" >\n    <div class=\"qode-accordion-content-inner\">\n        [vc_column_text]La donaci\u00f3 d&#8217;\u00f2rgans \u00e9s fonamental per garantir el bon funcionament del sistema de trasplantaments. \u00c9s per aix\u00f2 que des d\u2019ANiNATH contribu\u00efm a <strong>difondre la import\u00e0ncia de la donaci\u00f3 en viu i de cad\u00e0ver<\/strong>. Amb aquesta finalitat, organitzem esdeveniments de sensibilitzaci\u00f3 durant el Dia del Donant, el Dia del Trasplantament, en el sopar ben\u00e8fic anual, en esmorzars solidaris i fomentem el programa de formaci\u00f3 a les escoles.<\/p>\n<p>&nbsp;<\/p>\n<p><strong>El donant viu<\/strong> \u00e9s una figura cada vegada m\u00e9s freq\u00fcent en el trasplantament hep\u00e0tic en nens pel que considerem imprescindible que aquesta persona pugui viure l&#8217;experi\u00e8ncia de la millor manera possible. Per aquest motiu, ens proposem <strong>aconseguir l&#8217;optimitzaci\u00f3 de tot el proc\u00e9s<\/strong>: reduir el temps en qu\u00e8 es realitzen les proves m\u00e8diques fins al trasplantament, una comunicaci\u00f3 m\u00e9s efectiva amb el donant, assegurar les seves cobertures legals, &#8230;[\/vc_column_text]    <\/div>\n<\/div><h5 class=\"clearfix qode-title-holder\">\n<span class=\"qode-tab-title\">\n\t    <span class=\"qode-tab-title-inner\">\n        1.6. Infraestructures    <\/span>\n<\/span>\n<span class=\"qode-accordion-mark\">\n    <span class=\"qode-accordion-mark-icon\">\n        <span class=\"icon_plus\"><\/span>\n        <span class=\"icon_minus-06\"><\/span>\n    <\/span>\n<\/span>\n<\/h5>\n<div  class=\"qode-accordion-content \" >\n    <div class=\"qode-accordion-content-inner\">\n        [vc_column_text]ANiNATH d\u00f3na suport a la millora de les instal\u00b7lacions de l&#8217;Hospital de la Vall d&#8217;Hebron de Barcelona on es visiten i s&#8217;ingressen els nens trasplantats de fetge o en vies de trasplantament per fer-les m\u00e9s acollidores i c\u00f2modes:<\/p>\n<p>&nbsp;<\/p>\n<ul>\n<li>Hem proporcionat <strong>butaques-llit<\/strong> per a totes les habitacions de la segona planta de trasplantament de l&#8217;Hospital Matern-Infantil de la Vall d&#8217;Hebron perqu\u00e8 el membre de la fam\u00edlia que es queda a dormir amb el nen ingressat ho pugui fer de manera m\u00e9s confortable<\/li>\n<\/ul>\n<p>&nbsp;<\/p>\n<ul>\n<li>Ens assegurem que es disposa de <strong>material b\u00e0sic per als nens ingressats<\/strong> (mantes, trones, banyera per a nadons, tauleta per fer deures, &#8230;)<\/li>\n<\/ul>\n<p>&nbsp;<\/p>\n<ul>\n<li>Avui dia en qu\u00e8 \u00e9s tan important estar connectat a Internet, xarxes socials, &#8230; \u00e9s rellevant treballar per aconseguir millores en la <strong>Wifi de l&#8217;Hospital<\/strong> perqu\u00e8 els nens i nenes ingressats (i els seus acompanyants) no estiguin a\u00efllats durant l&#8217;hospitalitzaci\u00f3 i puguin estar m\u00e9s entretinguts<\/li>\n<\/ul>\n<p>[\/vc_column_text]    <\/div>\n<\/div><h5 class=\"clearfix qode-title-holder\">\n<span class=\"qode-tab-title\">\n\t    <span class=\"qode-tab-title-inner\">\n        1.7. Millores de processos    <\/span>\n<\/span>\n<span class=\"qode-accordion-mark\">\n    <span class=\"qode-accordion-mark-icon\">\n        <span class=\"icon_plus\"><\/span>\n        <span class=\"icon_minus-06\"><\/span>\n    <\/span>\n<\/span>\n<\/h5>\n<div  class=\"qode-accordion-content \" >\n    <div class=\"qode-accordion-content-inner\">\n        [vc_column_text]<\/p>\n<ul>\n<li>Aconseguir que la figura del psic\u00f2leg sigui part indispensable de l&#8217;equip de Trasplantament Hep\u00e0tic Infantil<\/li>\n<\/ul>\n<p>&nbsp;<\/p>\n<ul>\n<li>Aconseguir l&#8217;acompanyament dels pares als nens en les seves entrades de quir\u00f2fan<\/li>\n<\/ul>\n<p>[\/vc_column_text]    <\/div>\n<\/div><\/div>[\/vc_column][\/vc_row][vc_row css_animation=\u00bb\u00bb row_type=\u00bbrow\u00bb use_row_as_full_screen_section=\u00bbno\u00bb type=\u00bbfull_width\u00bb angled_section=\u00bbno\u00bb text_align=\u00bbleft\u00bb background_image_as_pattern=\u00bbwithout_pattern\u00bb][vc_column][vc_column_text css=\u00bb.vc_custom_1537202110109{padding-top: 20px !important;padding-bottom: 20px !important;}\u00bb]<\/p>\n<h4><strong>2. <\/strong><strong>Activitats educatives i l\u00fadiques<\/strong><\/h4>\n<p>[\/vc_column_text][vc_column_text]Una altra de les \u00e0rees priorit\u00e0ries per a ANiNATH \u00e9s la d&#8217;<strong>activitats educatives i l\u00fadiques<\/strong> en les que puguin participar nens, nenes i joves amb trasplantament hep\u00e0tic tant quan estan ingressats a l&#8217;Hospital com quan no ho estan:<\/p>\n<p>&nbsp;<\/p>\n<ul>\n<li><strong><strong>Tallers educatius\u00a0<\/strong><\/strong>al Museu AGBAR, Banc de Sang, Centre de Recuperaci\u00f3 d&#8217;Animals Marins (CRAM), &#8230;<\/li>\n<li><strong><strong>Festes i celebracions:<\/strong><\/strong>Dia del Trasplantament, Dia del Donant, Dia del Nen Hospitalitzat, celebraci\u00f3 de Sant Jordi, Dia en Fam\u00edlia, Festa Infantil, &#8230;<\/li>\n<\/ul>\n<p>[\/vc_column_text][\/vc_column][\/vc_row][vc_row css_animation=\u00bb\u00bb row_type=\u00bbrow\u00bb use_row_as_full_screen_section=\u00bbno\u00bb type=\u00bbfull_width\u00bb angled_section=\u00bbno\u00bb text_align=\u00bbleft\u00bb background_image_as_pattern=\u00bbwithout_pattern\u00bb][vc_column][vc_column_text css=\u00bb.vc_custom_1537202118149{padding-top: 20px !important;padding-bottom: 20px !important;}\u00bb]<\/p>\n<h4><strong>3.<\/strong><strong>\u00a0Recerca<\/strong><\/h4>\n<p>[\/vc_column_text][vc_column_text]La <strong>recerca i la innovaci\u00f3<\/strong> s\u00f3n claus per seguir avan\u00e7ant en el coneixement dels diagn\u00f2stics i tractaments de les malalties relacionades amb el trasplantament hep\u00e0tic infantil. \u00c9s per aix\u00f2 que, des de la constituci\u00f3 de ANiNATH el 2015, contribu\u00efm econ\u00f2micament amb l&#8217;Institut de Recerca de la Vall d&#8217;Hebron (VHIR) per donar suport a projectes de recerca elaborats pels especialistes de trasplantament hep\u00e0tic infantil de l&#8217;Hospital. Entre aquests projectes es troben:<\/p>\n<p>&nbsp;<\/p>\n<ul>\n<li>Estudi de la possible base gen\u00e8tica de la s\u00edndrome limfoproliferativa (PTLD) (PTLD)<\/li>\n<li>Valoraci\u00f3 de la qualitat de vida associada a la salut en el trasplantament hep\u00e0tic pedi\u00e0tric (programa d&#8217;educaci\u00f3 sanit\u00e0ria)<\/li>\n<\/ul>\n<p>[\/vc_column_text][vc_empty_space height=\u00bb45&#8243;][\/vc_column][\/vc_row]<\/p>\n<\/div>","protected":false},"excerpt":{"rendered":"<p>[vc_row css_animation=\u00bb\u00bb row_type=\u00bbrow\u00bb use_row_as_full_screen_section=\u00bbno\u00bb type=\u00bbfull_width\u00bb angled_section=\u00bbno\u00bb text_align=\u00bbleft\u00bb background_image_as_pattern=\u00bbwithout_pattern\u00bb css=\u00bb.vc_custom_1528958146100{padding-top: 30px !important;padding-right: 60px !important;}\u00bb z_index=\u00bb\u00bb][vc_column][vc_column_text] Objectiu General [\/vc_column_text][vc_empty_space height=\u00bb20&#8243;][vc_column_text] ANiNATH t\u00e9 com a finalitat principal\u00a0donar suport\u00a0i\u00a0millorar l&#8217;experi\u00e8ncia\u00a0del trasplantament de fetge i la vida que tindran el nen i la seva fam\u00edlia abans, durant i despr\u00e9s de&#8230;<\/p>\n","protected":false},"author":1,"featured_media":0,"parent":4970,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_uf_show_specific_survey":0,"_uf_disable_surveys":false,"footnotes":""},"class_list":["post-4986","page","type-page","status-publish","hentry"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.6 - 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