{"id":399,"date":"2023-09-14T14:07:25","date_gmt":"2023-09-14T12:07:25","guid":{"rendered":"https:\/\/cfnorge.bwod.dev\/?p=399"},"modified":"2025-11-05T12:19:17","modified_gmt":"2025-11-05T11:19:17","slug":"slik-er-det-a-vaere-parorende-med-cf","status":"publish","type":"post","link":"https:\/\/cfnorge.no\/en\/slik-er-det-a-vaere-parorende-med-cf\/","title":{"rendered":"Slik er det \u00e5 v\u00e6re p\u00e5r\u00f8rende med CF"},"content":{"rendered":"<p>[et_pb_section fb_built=&raquo;1&#8243; _builder_version=&raquo;4.21.0&#8243; _module_preset=&raquo;default&raquo; background_color=&raquo;gcid-9e2f3af2-1007-4221-b250-8e35d98c5991&#8243; custom_margin=&raquo;0px||||false|false&raquo; custom_padding=&raquo;0px||||false|false&raquo; global_colors_info=&raquo;{%22gcid-9e2f3af2-1007-4221-b250-8e35d98c5991%22:%91%22background_color%22%93}&raquo;][et_pb_row _builder_version=&raquo;4.21.0&#8243; _module_preset=&raquo;default&raquo; max_width=&raquo;900px&raquo; module_alignment=&raquo;center&raquo; custom_margin=&raquo;|auto||92px||&raquo; global_colors_info=&raquo;{}&raquo;][et_pb_column type=&raquo;4_4&#8243; _builder_version=&raquo;4.21.0&#8243; _module_preset=&raquo;default&raquo; global_colors_info=&raquo;{}&raquo;][et_pb_button button_url=&raquo;@ET-DC@eyJkeW5hbWljIjp0cnVlLCJjb250ZW50IjoicG9zdF9saW5rX3VybF9wYWdlIiwic2V0dGluZ3MiOnsicG9zdF9pZCI6IjI1NSJ9fQ==@&raquo; button_text=&raquo;Tilbake&raquo; _builder_version=&raquo;4.21.0&#8243; _dynamic_attributes=&raquo;button_url&raquo; _module_preset=&raquo;default&raquo; custom_button=&raquo;on&raquo; button_text_size=&raquo;18px&raquo; button_text_color=&raquo;gcid-edcc47c2-e936-4ba2-8e6c-8ca8cb2c2a05&#8243; button_bg_color=&raquo;gcid-9e2f3af2-1007-4221-b250-8e35d98c5991&#8243; button_border_width=&raquo;0px&raquo; button_border_color=&raquo;gcid-9e2f3af2-1007-4221-b250-8e35d98c5991&#8243; button_border_radius=&raquo;0px&raquo; button_font=&raquo;Poppins||||||||&raquo; button_icon=&raquo;&#x23;||divi||400&#8243; button_icon_placement=&raquo;left&raquo; button_on_hover=&raquo;off&raquo; custom_margin=&raquo;||20px||false|false&raquo; custom_padding=&raquo;||||false|false&raquo; global_colors_info=&raquo;{%22gcid-edcc47c2-e936-4ba2-8e6c-8ca8cb2c2a05%22:%91%22button_text_color%22%93,%22gcid-9e2f3af2-1007-4221-b250-8e35d98c5991%22:%91%22button_border_color%22,%22button_bg_color%22%93}&raquo;][\/et_pb_button][et_pb_image src=&raquo;https:\/\/cfnorge.bwod.dev\/wp-content\/uploads\/2024\/07\/parorende-med-CF-artikkel-header.jpg&raquo; title_text=&raquo;parorende-med-CF-artikkel-header&raquo; _builder_version=&raquo;4.21.0&#8243; _module_preset=&raquo;default&raquo; global_colors_info=&raquo;{}&raquo;][\/et_pb_image][et_pb_post_title meta=&raquo;off&raquo; featured_image=&raquo;off&raquo; _builder_version=&raquo;4.21.0&#8243; _module_preset=&raquo;default&raquo; title_font=&raquo;||||||||&raquo; title_text_color=&raquo;gcid-26e97d0d-b127-4ce1-b597-0df3fb01df24&#8243; title_font_size=&raquo;35px&raquo; global_colors_info=&raquo;{%22gcid-26e97d0d-b127-4ce1-b597-0df3fb01df24%22:%91%22title_text_color%22%93}&raquo;][\/et_pb_post_title][et_pb_text _builder_version=&raquo;4.21.0&#8243; _module_preset=&raquo;default&raquo; text_font=&raquo;Poppins|300|||||||&raquo; text_text_color=&raquo;gcid-26e97d0d-b127-4ce1-b597-0df3fb01df24&#8243; link_font=&raquo;Poppins|500|||||||&raquo; link_text_color=&raquo;gcid-edcc47c2-e936-4ba2-8e6c-8ca8cb2c2a05&#8243; header_2_text_color=&raquo;gcid-26e97d0d-b127-4ce1-b597-0df3fb01df24&#8243; header_2_font_size=&raquo;18px&raquo; header_2_line_height=&raquo;1.4em&raquo; global_colors_info=&raquo;{%22gcid-26e97d0d-b127-4ce1-b597-0df3fb01df24%22:%91%22text_text_color%22,%22header_2_text_color%22%93,%22gcid-edcc47c2-e936-4ba2-8e6c-8ca8cb2c2a05%22:%91%22link_text_color%22%93}&raquo;]<\/p>\n<h2><span data-contrast=\"none\" xml:lang=\"NB-NO\" lang=\"NB-NO\" class=\"TextRun SCXW230527156 BCX0\"><span class=\"NormalTextRun SCXW230527156 BCX0\">Ingen barn er like. Det gjelder naturligvis ogs\u00e5 barn med cystisk fibrose (CF), b\u00e5de i personlighet og i sykdomsbilde. Alle barn vil oppdage, utforske og utvikle seg, men n\u00e5r et barn lever med CF er det noen hensyn som m\u00e5 tas.<\/span><\/span><\/h2>\n<p>[\/et_pb_text][et_pb_text _builder_version=&raquo;4.21.0&#8243; _module_preset=&raquo;default&raquo; text_font=&raquo;Poppins|300|||||||&raquo; text_text_color=&raquo;gcid-26e97d0d-b127-4ce1-b597-0df3fb01df24&#8243; link_font=&raquo;Poppins|500|||||||&raquo; link_text_color=&raquo;gcid-edcc47c2-e936-4ba2-8e6c-8ca8cb2c2a05&#8243; global_colors_info=&raquo;{%22gcid-26e97d0d-b127-4ce1-b597-0df3fb01df24%22:%91%22text_text_color%22%93,%22gcid-edcc47c2-e936-4ba2-8e6c-8ca8cb2c2a05%22:%91%22link_text_color%22%93}&raquo;]<\/p>\n<p><span data-contrast=\"none\">P\u00e5r\u00f8rende har rett til involvering og st\u00f8tte under hele pasient- eller brukerforl\u00f8pet. Rettighetene gjelder for alle p\u00e5r\u00f8rendegrupper, uavhengig av diagnose, og inkluderer eldre, voksne, ungdom og barn som p\u00e5r\u00f8rende.\u202fDette skriver Helsedirektoratet p\u00e5 sine\u202f<\/span><a href=\"https:\/\/www.helsedirektoratet.no\/tema\/parorende\"><span data-contrast=\"none\">temasider om p\u00e5r\u00f8rende<\/span><\/a><span data-contrast=\"none\">.<\/span><span data-ccp-props=\"{&quot;335559739&quot;:150}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"none\">Direktoratet har laget en egen\u202f<\/span><a href=\"https:\/\/www.helsedirektoratet.no\/veiledere\/parorendeveileder\"><b><span data-contrast=\"none\">Veileder om p\u00e5r\u00f8rende<\/span><\/b><\/a><span data-contrast=\"none\">. Ved \u00e5 lese den, kan du se hva du eller dine p\u00e5r\u00f8rende har rett til av hjelp og st\u00f8tte. Elementer ved cystisk fibrose som gj\u00f8r at p\u00e5r\u00f8rende kan ha s\u00e6rlig behov for st\u00f8tte\u202f:<\/span><span data-ccp-props=\"{&quot;335559739&quot;:150}\">\u00a0<\/span><\/p>\n<ul>\n<li data-leveltext=\"\uf0b7\" data-font=\"Symbol\" data-listid=\"1\" data-list-defn-props=\"{&quot;335552541&quot;:1,&quot;335559684&quot;:-2,&quot;335559685&quot;:720,&quot;335559991&quot;:360,&quot;469769226&quot;:&quot;Symbol&quot;,&quot;469769242&quot;:[8226],&quot;469777803&quot;:&quot;left&quot;,&quot;469777804&quot;:&quot;\uf0b7&quot;,&quot;469777815&quot;:&quot;multilevel&quot;}\" aria-setsize=\"-1\" data-aria-posinset=\"1\" data-aria-level=\"1\"><span data-contrast=\"none\">Livstruende sykdom og alvorlig, progredierende sykdom<\/span><span data-ccp-props=\"{&quot;134233117&quot;:true,&quot;134233118&quot;:true}\">\u00a0<\/span><\/li>\n<li data-leveltext=\"\uf0b7\" data-font=\"Symbol\" data-listid=\"1\" data-list-defn-props=\"{&quot;335552541&quot;:1,&quot;335559684&quot;:-2,&quot;335559685&quot;:720,&quot;335559991&quot;:360,&quot;469769226&quot;:&quot;Symbol&quot;,&quot;469769242&quot;:[8226],&quot;469777803&quot;:&quot;left&quot;,&quot;469777804&quot;:&quot;\uf0b7&quot;,&quot;469777815&quot;:&quot;multilevel&quot;}\" aria-setsize=\"-1\" data-aria-posinset=\"2\" data-aria-level=\"1\"><span data-contrast=\"none\">Sykdom som kan ha store konsekvenser for p\u00e5r\u00f8rende i mange \u00e5r eller resten av livet\u202f<\/span><span data-ccp-props=\"{&quot;134233117&quot;:true,&quot;134233118&quot;:true}\">\u00a0<\/span><\/li>\n<li data-leveltext=\"\uf0b7\" data-font=\"Symbol\" data-listid=\"1\" data-list-defn-props=\"{&quot;335552541&quot;:1,&quot;335559684&quot;:-2,&quot;335559685&quot;:720,&quot;335559991&quot;:360,&quot;469769226&quot;:&quot;Symbol&quot;,&quot;469769242&quot;:[8226],&quot;469777803&quot;:&quot;left&quot;,&quot;469777804&quot;:&quot;\uf0b7&quot;,&quot;469777815&quot;:&quot;multilevel&quot;}\" aria-setsize=\"-1\" data-aria-posinset=\"3\" data-aria-level=\"1\"><span data-contrast=\"none\">Sammensatte og komplekse behov som krever koordinerte helse- og omsorgstjenester over lang tid<\/span><span data-ccp-props=\"{&quot;134233117&quot;:true,&quot;134233118&quot;:true}\">\u00a0<\/span><\/li>\n<\/ul>\n<p><span data-contrast=\"none\">Veilederen har et\u202f<\/span><a href=\"https:\/\/www.helsedirektoratet.no\/veiledere\/parorendeveileder\/informasjon-og-stotte-til-barn-som-parorende\"><b><span data-contrast=\"none\">eget kapittel om barn som p\u00e5r\u00f8rende<\/span><\/b><\/a><b><span data-contrast=\"none\">,\u202f<\/span><\/b><span data-contrast=\"none\">og vi vil spesielt fremheve at\u202f<\/span><b><span data-contrast=\"none\">barn<\/span><\/b><span data-contrast=\"none\">\u202fav mennesker med ovennevnte helseutfordringer har egne rettigheter som p\u00e5r\u00f8rende.\u00a0<\/span><span data-ccp-props=\"{&quot;335559739&quot;:150}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"none\">Helsenorge.no har ogs\u00e5 en fin og nyttig temasamling om \u202f<\/span><a href=\"https:\/\/helsenorge.no\/parorende\/barn-trenger-apenhet-om-sykdom\"><span data-contrast=\"none\">barn som p\u00e5r\u00f8rende.<\/span><span data-contrast=\"none\">\u00a0<\/span><\/a><span data-ccp-props=\"{&quot;335559739&quot;:150}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"none\">\u202f<\/span><span data-ccp-props=\"{&quot;335559739&quot;:150}\">\u00a0<\/span><\/p>\n<h3><span style=\"font-size: medium; color: #050267;\"><b>Filmressurser om \u00e5 v\u00e6re p\u00e5r\u00f8rende<\/b>\u00a0<\/span><\/h3>\n<p><span data-contrast=\"none\">Hos\u202f<\/span><a href=\"http:\/\/www.pfilm.no\/\"><span data-contrast=\"none\">P\u00e5r\u00f8rendefilm<\/span><\/a><span data-contrast=\"none\">\u202fkan du se sm\u00e5 filmer om det \u00e5 v\u00e6re s\u00f8sken, barn, partner eller forelder som p\u00e5r\u00f8rende. Filmene handler ikke spesifikt om cystisk fibrose, men kan v\u00e6re nyttige likevel. Her er det ogs\u00e5 fine og nyttige filmer med fagfolk som gir gode r\u00e5d.<\/span><span data-ccp-props=\"{&quot;335559739&quot;:150}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"none\">Torun Vatne er psykolog PhD og arbeider p\u00e5 Frambu, senter for sjeldne diagnoser. Hun er prosjektleder for forskningsprosjektet &laquo;\u00e5 vokse opp som s\u00f8sken til barn med nedsatt funksjonsevne&raquo; ved Frambu i samarbeid med Psykologisk institutt UIO.\u00a0<\/span><span data-ccp-props=\"{&quot;335559739&quot;:150}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"none\">Se filmen\u202f<\/span><a href=\"http:\/\/pfilm.no\/film\/ssken-som-parrende\"><b><span data-contrast=\"none\">P\u00e5r\u00f8rende: S\u00f8sken som p\u00e5r\u00f8rende.<\/span><\/b><\/a><span data-ccp-props=\"{&quot;335559738&quot;:150,&quot;335559739&quot;:150}\">\u00a0<\/span><\/p>\n<p><span data-ccp-props=\"{&quot;335559739&quot;:150}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"none\">Fra\u202f<\/span><b><span data-contrast=\"none\">Frambu<\/span><\/b><span data-contrast=\"none\">\u202fsenter for sjeldne diagnoser<\/span><span data-ccp-props=\"{&quot;335559739&quot;:150}\">\u00a0<\/span><\/p>\n<ul>\n<li data-leveltext=\"\uf0b7\" data-font=\"Symbol\" data-listid=\"2\" data-list-defn-props=\"{&quot;335552541&quot;:1,&quot;335559684&quot;:-2,&quot;335559685&quot;:720,&quot;335559991&quot;:360,&quot;469769226&quot;:&quot;Symbol&quot;,&quot;469769242&quot;:[8226],&quot;469777803&quot;:&quot;left&quot;,&quot;469777804&quot;:&quot;\uf0b7&quot;,&quot;469777815&quot;:&quot;multilevel&quot;}\" aria-setsize=\"-1\" data-aria-posinset=\"1\" data-aria-level=\"1\"><a href=\"https:\/\/frambu.no\/tema\/sosken-og-soskenliv-i-familier-med-funksjonshemmede-barn\/\"><span data-contrast=\"none\">S\u00f8sken og s\u00f8skenliv i familier med funksjonshemmede barn<\/span><\/a><span data-ccp-props=\"{&quot;134233117&quot;:true,&quot;134233118&quot;:true}\">\u00a0<\/span><\/li>\n<li data-leveltext=\"\uf0b7\" data-font=\"Symbol\" data-listid=\"2\" data-list-defn-props=\"{&quot;335552541&quot;:1,&quot;335559684&quot;:-2,&quot;335559685&quot;:720,&quot;335559991&quot;:360,&quot;469769226&quot;:&quot;Symbol&quot;,&quot;469769242&quot;:[8226],&quot;469777803&quot;:&quot;left&quot;,&quot;469777804&quot;:&quot;\uf0b7&quot;,&quot;469777815&quot;:&quot;multilevel&quot;}\" aria-setsize=\"-1\" data-aria-posinset=\"2\" data-aria-level=\"1\"><a href=\"https:\/\/frambu.no\/tema\/et-annerledes-soskenliv\/\"><span data-contrast=\"none\">Et annerledes s\u00f8skenliv?<\/span><\/a><span data-ccp-props=\"{&quot;134233117&quot;:true,&quot;134233118&quot;:true}\">\u00a0<\/span><\/li>\n<li data-leveltext=\"\uf0b7\" data-font=\"Symbol\" data-listid=\"2\" data-list-defn-props=\"{&quot;335552541&quot;:1,&quot;335559684&quot;:-2,&quot;335559685&quot;:720,&quot;335559991&quot;:360,&quot;469769226&quot;:&quot;Symbol&quot;,&quot;469769242&quot;:[8226],&quot;469777803&quot;:&quot;left&quot;,&quot;469777804&quot;:&quot;\uf0b7&quot;,&quot;469777815&quot;:&quot;multilevel&quot;}\" aria-setsize=\"-1\" data-aria-posinset=\"3\" data-aria-level=\"1\"><a href=\"https:\/\/frambu.no\/tema\/hva-kan-foreldre-og-fagpersoner-gjore-for-sosken\/\"><span data-contrast=\"none\">Hva kan foreldre og fagpersoner gj\u00f8re for s\u00f8sken?<\/span><\/a><span data-ccp-props=\"{&quot;134233117&quot;:true,&quot;134233118&quot;:true}\">\u00a0<\/span><\/li>\n<li data-leveltext=\"\uf0b7\" data-font=\"Symbol\" data-listid=\"2\" data-list-defn-props=\"{&quot;335552541&quot;:1,&quot;335559684&quot;:-2,&quot;335559685&quot;:720,&quot;335559991&quot;:360,&quot;469769226&quot;:&quot;Symbol&quot;,&quot;469769242&quot;:[8226],&quot;469777803&quot;:&quot;left&quot;,&quot;469777804&quot;:&quot;\uf0b7&quot;,&quot;469777815&quot;:&quot;multilevel&quot;}\" aria-setsize=\"-1\" data-aria-posinset=\"4\" data-aria-level=\"1\"><a href=\"https:\/\/frambu.no\/tema\/voksne-sosken\/\"><span data-contrast=\"none\">Voksne s\u00f8sken<\/span><\/a><span data-ccp-props=\"{&quot;134233117&quot;:true,&quot;134233118&quot;:true}\">\u00a0<\/span><\/li>\n<\/ul>\n<p>[\/et_pb_text][\/et_pb_column][\/et_pb_row][\/et_pb_section]<\/p>","protected":false},"excerpt":{"rendered":"<p>I tillegg til foreldre, p\u00e5virkes ogs\u00e5 s\u00f8sken, partnere og barn av mennesker med cystisk fibrose. Her finner du nyttige og viktige ressurser om dette. <\/p>","protected":false},"author":1,"featured_media":620,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_et_pb_use_builder":"on","_et_pb_old_content":"","_et_gb_content_width":"","footnotes":""},"categories":[39],"tags":[],"class_list":["post-399","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-nyheter"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v26.2 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>Slik er det \u00e5 v\u00e6re p\u00e5r\u00f8rende med CF - CF Norge<\/title>\n<meta name=\"description\" content=\"Foreldre, s\u00f8sken, partnere og barn av mennesker med cystisk fibrose er p\u00e5virket av at det er CF i familien. 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