It’s the way I like it! Self-determination and self-assertiveness in persons with ID A participatory research project Østby, May (associate professor);

Presentasjon om: "It’s the way I like it! Self-determination and self-assertiveness in persons with ID A participatory research project Østby, May (associate professor);"— Utskrift av presentasjonen:

1 It’s the way I like it! Self-determination and self-assertiveness in persons with ID A participatory research project Østby, May (associate professor); Haugenes, Marit (assistant professor); Høgstøyl, Camilla (co-researcher); Oterhals, Ole Magnus (co- researcher); Sten, Magnus (co-researcher); Werner, Guro Fiskergård (lecturer) and Witsø, Aud Elisabeth (associate professor)

2 THE PROJECT GROUP May sier om Guro Contact info: May Østby, Molde University College, p.box. 2110, N-6402 Molde, Norway,

3 Background In Norway, most adults with ID, live alone in their own fully equipped flats, which they own or rent Some of the flats are assembled in larger buildings, where there`s also space for staff or for gatherings Most of these are placed in the ordinary living areas in the communities The staff comes into the residents` home to give assistance and help Norway has since 1960 had a bachelors degree in learning disability nursing Marit og medforskere Magnus: Personalet kommer hjem til brukerne og gir hjelp der

4 HOW WE DID IT AND WHY We are researching together
We wanted to find out if group discussions could make it easier for people with ID -To make decisions -To tell staff what they wanted And we wanted to learn how to facilitate for co- researchers with ID to secure real participation in research May og Ole Magnus

5 What we have done so far Accomplished group meetings in a period of 10 months in 3 different counties 20 people with ID, in 6 groups Interviewed participants, staff (20)and relatives (15) before and after the group meeting period Analyzed data from the interviews Aud Elisabeth og Camilla

6 Example of questions Does anyone else decide when you should go to bed? Does anyone help you or give you advice? Does it happen that others decide? No, I decide myself I decide myself, but staff helps me I decide myself, but family helps me Sometimes I decide, other times staff decides Sometimes I decide, other times my family decides Staff decides Family decides I don’t know No answer Multiple choices Aud Elisabeth og Camilla

7 Filmtriggers 8 filmed vignettes were used in the group-meetings to give a hint for discussions about self-determination These films are based on experiences from co-reseachers, or their friends, and slightly changed to avoid recognition by staff Marit og Magnus Magnus: Vi brukte 8 filmer for å diskutere selvbestemmelse i samtalegruppene.

8 We will now show you one of our film vignettes «The Pocket Money»
Ole Magnus

9 Where we are in the research process
Still working with analysis We have had 3 «two-day» gatherings - summing up and reviewing answers from the questionnaires We have worked in teams with excel sheets (numbers) We have also been working with analysis of texts Aud Elisabeth og medforskere Magnus: Vi har også jobbet med analyse av tekst.

10 Excell and numbers  But smiling anyway ;) May og Ole Magnus

11 Talking about the results Understanding diagrams
Aud Elisabeth og Camilla «Pocket Money» Visualized with Lego-bricks

12 Visualizing diagrams Marit og Magnus
Magnus: Det var artig å prøve forskjellige måter å vise analysene

13 Self-determination – BEFORE group meetings
WHAT WE FOUND Self-determination – BEFORE group meetings May og Ole Magnus Participants Family Staff

14 Self-determination – after group meetings
Aud Elisabeth og Camilla Staff Participants Family

15 Has anything changed? Staff ask more often if I need some help. I appreciate that. Instead of just deciding themselves” After watching the films I have gained some new insights – how help can be accomplished I have become tougher and I speak out – I have learned that from you Staff; He puts words in to his feelings now – perhaps we have become better at helping him with that, too Family member: Perhaps he can decide a little more himself now, I can’t remember specific situations, but he speaks out more often, about being a grown up man and that he can’t be treated like a child Medforskere Magnus: Etter at jeg har sett på filmene har jeg fått innblikk i nye ting. Hvordan det kan være å få hjelp. Camilla: Magnus: En primærkontakt sier: ”Han har blitt flinkere til å sette ord på følelsene sine – kan hende vi også har blitt flinkere til å hjelpe han med dette” Camilla: Et svar fra et familiemedlem er sånn: «Kanskje han får bestemme litt mer selv nå. Kan ikke huske akkurat hvilke situasjoner men han sier ifra oftere at han er voksen og at han ikke må behandles som et barn».

16 GOING TO BED – BEFORE AND AFTER
May – Over ser vi selvbestemmelse før og etter for alle spørsmålene, mens når vi ser på dem ett og ett, så er det litt annerledes. La oss se på spørsmålet om å bestemme når man skal legge seg. Her ser vi stor forandring i det å bestemme selv, (det blå), og sammen med svaret som er brunt som betyr at jeg bestemmer selv, men personalet hjelper meg, kan det se ut som at selvbestemmelse på dette området oppleves som mye sterkere. Vi ser også at det svaret som er grønt, dvs at personalet bestemmer, er borte. Vær obs på at fargene er endret!! Mellomblå: Nei, jeg bestemmer helt selv Brun (Mørk blå): Jeg bestemmer selv, men personale hjelper meg. Grå (Grønn): Jeg bestemmer selv, men familien hjelper meg. Gul (Olivengrønn): Noen ganger bestemmer jeg, andre ganger bestemmer personale. Mørk blå (Orange): Noen ganger bestemmer jeg, andre ganger bestemmer familien. Grønt (Turkis): Det er personale som bestemmer. Lys Blå: Det er familien som bestemmer. ( Rosa) Syrin: Vet ikke Lys grå (Lys grønn): Ubesvart

17 Has anything improved regarding:
= Yes = No = Don`t know Speaking your mind when disagreeing? Marit, involvere Magnus? Having overnight guests? Speaking your mind in general?

18 What is most important for them to decide?
Marit og Magnus Magnus: Help Work Friends Evrything

19 What is most important for them to decide?
Privacy (P): «I don’t want them to listen while I’m on the phone» Help/support (P): «How the help is goin to be» Leisure time (F): «That he can keep on with his hobbies» Daily life (P): «Clothes and such things, and how I want to use my money» Work (F): «That he likes his job, and that he actually have a job» Friends (F): «Who he wants to be with» Everything (P): «Everything is important to decide» Dear to tell (P): «I dear, but some of the staff it is impossible to talk to, anyway» Camilla: Ole Magnus: Magnus: «At han får holde på med hobbyene sine» Magnus: «Hvem han skal være sammen med»

20 Summary Staff reports a higher degree of selfdetermination than participants and family Everyone answered that there were small changes in selfdetermination At the same time, there are some improvements in some of the areas under investigation There are large improvements when it comes to experience of the possibilty to disagree and claim their rights They have many and clear views of what is most important for them to decide The findings show that people with ID has limited selfdetermination? Marit Magnus: Alle vi spurte svarte at de opplevde lite forandring i selvbestemmelse Aud Elisabeth Camilla May Ole Magnus

21 Contact: May Østby, +4799746629 Epost: May.Ostby@Himolde.no
THANK YOU! Contact: May Østby, Epost: