Privat Socialrådgiver Karin B Nissen
Specialist på børne og voksen området - social, psykiatri, handicap
Klinik for Psykoterapi - hundeassisteret kognitiv adfærdsterapi
§ 54 støtteperson for forældre med anbragte børn
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Ny undersøgelse af familier med alvorligt syge børns behov
Posted on September 2, 2020 at 7:30 AM |
Når et barn bliver alvorligt sygt, rammes hele familien. Men hvor søger familierne hjælp og støtte? Og hvor mangler de støtte? Det har KOPA - Kompetencecenter for Patientoplevelser - undersøgt ved at interviewe 16 familier med alvorligt syge børn. Derudover er patientforeninger bidraget med viden om, hvilken type hjælp og støtte familierne efterspørger.
Resultaterne af undersøgelsen overrasker i grunden ikke, fordi på tværs af diagnoser er det samme forhold, familierne oplever som udfordrende, og samme støtte og hjælp de efterspørger:
> Ens behov - uens tilbud. Der er stor forskel på mængden af støttetilbud alt efter diagnose: jo sjældnere diagnose, desto færre tilbud.
> Hele familien har brug for støtte. Sygdommen påvirker hele familien, men hverken hospital eller kommune har fokus på den samlede situation.
> Kommunen som modspiller. Kampene med kommunen om økonomisk støtte er en større stressfaktor for familierne end selve sygdommen.
> Spejling i andre familier giver håb. Familien har stor glæde af at mødes med andre familier i samme situation. Det giver ro og håb i en svær situation.
Undersøgelsen viser, at der er brug for et stærkt tværsektorielt samarbejde omkring familierne. Ikke bare omkring det syge barn, men i forhold til hele familien inklusiv raske søskende.
Derfor anbefaler KOPA på baggrund af undersøgelsen:
> En fast koordinator. Tildel familierne en fast tovholder, som har fokus på hele sygdommen og at hjælpe hele familien.
> Specialiseret psykologhjælp. Forebyg psykiske belastninger – tilbyd psykologer/terapeuter med speciale i familier med alvorlig sygdom på hospitalet og uden for hospitalsregi.
> Fællesskab med andre familier. Facilitér fysiske og virtuelle netværk for familierne, så de får mulighed for at sparre og vidensdele familie til familie.
Det skærer i hjertet at læse, at familierne i grunden bare ønsker at blive mødt med tillid, blive lyttet til og taget alvorligt. Hvorfor er det ikke en selvfølge? Det kommer jeg aldrig til at forstå!
Du kan læse mere her: https://patientoplevelser.dk/sites/patientoplevelser.dk/files/rapport_alle_de_smaa_ting_final_002.pdf ;
Categories: Børnehandikap, Sagsbehandling
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