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Neighbourhood nursing: connection, place and meaning in the everyday experience of dementia
Linköpings universitet, Institutionen för samhälls- och välfärdsstudier, Avdelningen för omvårdnad. Linköpings universitet, Medicinska fakulteten. Region Östergötland, Närsjukvården i centrala Östergötland, Neurologiska kliniken i Linköping.ORCID-id: 0000-0002-8163-5045
2019 (engelsk)Doktoravhandling, med artikler (Annet vitenskapelig)
Abstract [en]

Background: Recent policy is marked by a shift towards enabling people with dementia to remain at home and in their neighbourhoods, yet little is known about the wider perspective of neighbourhood as an everyday place of connection, practice and meaning in the lives of people with experience of dementia.  

Aims: The aim of this thesis is twofold. The first aim is to explore the neighbourhood as an everyday place for people with experiences of dementia. The second aim is to explore neighbourhood as a place for practice.  

Methods and Designs: Five studies are included in the thesis with both quantitative and qualitative designs. Study I had a cross-sectional exploratory and descriptive design. A total cohort of 17, 405 people with a dementia diagnosis were identified and matched with data about home care services and housing, and were then associated with socio-demographic factors in three county councils: Östergötland, Stockholm and Västerbotten. Study II had a phenomenological design; 14 community-dwelling people diagnosed with dementia in the County of Östergötland participated using walking interviews. Study III had an inductive and exploratory qualitative design including 14 community-dwelling people living alone with dementia in England, Scotland and Sweden involving multiple data collection methods. Study IV had an inductive and explorative qualitative design that included 22 people with the lived, personal and professional experiences of dementia and used semi-structured individual and group interviews. Study V had an inductive and explorative qualitative design where the perspectives of 18 participants (registered and specialist nurses) were included using shadowing as the main method for data collection.  

Findings: In study I, 72% of the cohort was living in ordinary housing and 28% in special housing of the total of 17, 405 people with a dementia diagnosis. Overall, 52% of 17, 405 people with dementia in three county councils (Östergötland, Stockholm and Västerbotten) were living alone. Study II revealed that walking in the neighbourhood was an integral part of their day-to-day activities that helped them to manage life with dementia. Connection to nature by being outdoors was a restorative practice for people living with dementia. Neighbourhood was often described as a social context, although some participants living alone revealed that their social contacts were mainly staff working in municipal home care. In study III, participants across all three field sites channelled their efforts to stay connected to the neighbourhood into creating new ways of maintaining social networks and relationships. By participating in several activities (provided in the United Kingdom by the third-sector and charitable groups, and in Sweden, by the municipalities), bonds of friendship were created. However, the impact of stigma surrounding dementia was highlighted by the participants, which caused experiences of involuntary solitude or loneliness. Despite the impact of stigma, participants took control over their lives by searching for new daily social connections in the neighbourhood and were by no means passive in the face of the challenges in everyday life. In study IV, the participants discussed how dementia was stigmatized in the community. People  living with dementia were often not being respected as active citizens with their own resources in the community. Being socially active in a group or in public spaces were strategies to maintain a social role in the community. Participants with different experiences of dementia wanted the day care centres and teams to be more centrally involved in person-centred care and health-promoting improvements. Finally, in study V, participants struggled with the commonly held view of their role and their workplace within the health care system, interpreting it as being invisible, as if placed in a black box. The tasks and responsibilities of the participants were shifting to assistant nurses, neighbours and family members according to the socio-economic level of the municipality. Nonetheless, the participants were clearly part of the neighbourhood. The findings of this thesis have been integrated into a combined thematic analysis based on the five studies to reach an overall representation of people’s experiences of neighbourhood as an everyday place and a place for practice in the context of dementia. Five main themes (and three sub-themes) emerged from the analysis: (1) walkable attachment to the lived neighbourhood; (2) daily activities promote health and well-being; (3) opportunities for social connections; (4) just treat us as active citizens; (5) neighbourhood: a place for practice. The analysis suggested the neighbourhood was not only described as a walkable, social and citizenship arena in the context of dementia; it was also a place where practice was ongoing around the clock (studies II, III, IV and V) because most of the people with dementia are living in ordinary housing (study I).  

Conclusion: The thesis presents a new foundation and knowledge to understand neighbourhood as a place for everyday life and practice by applying a new lens for understanding. The neighbourhood can be understood as a place linked by connections that people actively searched out, and where the meaning of place emerges via movement of the body through the world. It is also a site where practices support everyday life for people with dementia, especially for those living alone with dementia. This points to the need to re-think nursing practice, where “neighbourhood nursing” as a formal model with a lifeworld perspective has to be established in dialogue with citizens.

Abstract [sv]

Bakgrund: Den senaste samhällsutvecklingen och de politiska ambitionerna har utgått alltmer från att göra det möjligt för personer med demenssjukdom att bo kvar allt längre i sina hem och grannskap. Trots denna utveckling finns det lite kunskap utifrån det bredare perspektivet om grannskapet som en vardaglig plats för relationer, omvårdnad samt vilken mening det har för personer som har erfarenhet av demens.

Syfte: Syftet med avhandlingen var för det första att undersöka grannskapet som en plats i vardagen för personer som har erfarenheter av demens, och för det andra, att undersöka grannskapet som en plats för omvårdnad.

Design och metod: Avhandlingen inkluderar fem delstudier med både kvalitativ och kvantitativ design. Studie I hade en explorativ och beskrivande tvärsnittsdesign. Totalt ingick det 17 405 personer med en demensdiagnos som identifierades och samkördes med information av hemtjänstinsatser och boende. Denna informationen förenades sedan med de socio-demografiska faktorerna i de tre regionerna Östergötland, Stockholm och Västerbotten. Studie II hade en femenologisk design som inkluderade 14 personer som bodde i ett eget boende med en demensdiagnos i Östergötlands län och som deltog i ´promenad intervjuer´. Studie III hade en induktiv och beskrivande kvalitativ design vilket inkluderade 14 personer som bodde ensamma i ett eget boende med en demensdiagnos i England, Skottland och Sverige. De 14 personer som bodde i ett eget boende med en demensdiagnos i Studie III deltog i flera datainsamlingsmetoder. Studie IV hade en induktiv och beskrivande kvalitativ design som inkluderade 22 personer med levda, personliga och professionella erfarenheter av demens som deltog i semistrukturerade individuella och gruppintervjuer. Slutligen, Studie V hade också en induktiv och beskrivande kvalitativ design där 18 deltagare (legitimerade sjuksköterskor och specialistsjuksköterskor) inkluderades skuggning som är den huvudsakliga metoden för datainsamlingen.

Resultat: I Studie I fann vi att 72 % av den totala befolkningen av 17 405 personer med en demensdiagnos bodde i ordinärt boende och 28 % i särskilt boende. Sammantaget bodde 52 % av de 17 405 personerna med demens i singelhushåll i de tre regionerna Östergötland, Stockholm och Västerbotten. Studie II påvisade att promenader i grannskapet var en betydelsefull del av deras dagliga aktiviteter som hjälpte personer med en demensdiagnos att hantera ett liv med demens. Att vara utomhus i naturen medförde att personer med demens knöt an till naturen och genom det återhämtade sig. Grannskapet beskrivs ofta som ett socialt sammanhang, även om vissa deltagare som bodde ensamma berättade att deras sociala kontakter främst var med personalen som arbetade i den kommunala hemsjukvården (och hemtjänsten). I studie III beskrev personer med demens i England, Skottland och Sverige hur de ansträngde sig för att hålla kvar kontakten med grannskapet men också hur de skapade nya sätt att upprätthålla och hitta nya sociala nätverk och kontakter. Dessa vänskapsband skapades genom att delta i olika aktiviteter (som tillhandahålls i England av tredje sektorn och välgörenhetsgrupper, och i Sverige, av kommunerna). Även effekterna av stigmatiseringen kring att leva med demens betonades av deltagarna, de beskrev detta som en orsak till ofrivillig ensamhet. Trots påverkan av stigmatiseringen tog personerna med demens, kontroll över sina liv, genom att finna nya dagliga sociala kontakter i grannskapet. Personer med demens är intressearde av att anta nya utmaningarna i vardagen. I studie IV diskuterade personerna med olika erfarenheter av demens hur demenssjukdomen som ett stigmatiserat tillstånd i samhället påverkade dem. De ansåg att deltagarna som lever med en demensdiagnos ofta inte respekterades som aktiva medborgare med sina egna resurser i samhället. Personerna med olika erfarenhet av demens framhöll också att vara socialt aktiv i en grupp eller i offentliga rum var strategier för att upprätthålla en social roll i samhället. Förutom betydelsen av det sociala livet påpekade personerna med olika erfarenheter av demens att de skulle önska att dagverksamheterna och demensteamen skulle utgå mer utifrån person-centrerad vård och hälsofrämjande förhållningssätt. Slutligen, i studie V observerades det hur legitimerade sjuksköterskor och specialistsjuksköterskor kämpade med den vanligt förekommande synen på deras profession och arbetsplatsen inom hälso-och sjukvården som gav sig uttryck som osynlig. Deras uppgifter och ansvar hade även förändrats och allt mer hade överlåtits till undersköterskor, grannar och familjemedlemmar och kommunernas socioekonomiska status hade betydelse. Legitimerade sjuksköterskor och specialistsjuksköterskorna var en självklar del av grannskapet. Resultaten av denna avhandling har integrerats i en sammansatt tematisk analys baserad på de fem studierna för att nå en övergripande representation av människors upplevelser av grannskapet som en plats för det dagliga livet och omvårdnad med utgångspunkt utifrån erfarenheter av demens. Analysen resulterade i fem huvudteman (och tre underteman): (1) anknytning till det existerade grannskapet via promenader (2) dagliga aktiviteter främjar hälsa och välbefinnande; (3) möjligheter för sociala kontakter; (4) behandla oss som aktiva medborgare; (5) grannskapet som en plats för omvårdnad. Grannskapet beskrivs inte bara som en framkomlig, social medborgarskapsarena i relation till demens, utan var även en plats där sjuksköterskepraxis pågick dygnet runt (studierna II, III, IV och V) eftersom de flesta personer som lever med demens bor i ordinärt boende (studie I).

Konklusion: Avhandlingen presenterar ett nytt underlag och ny kunskap för att förstå grannskapet som en plats för dagligt liv och omvårdnad genom att använda ett nytt perspektiv för att få förståelse. Grannskapet kan förstås som en plats förenad genom förbindelser som människor aktivt söker efter och där betydelsen av grannskapet inträder genom kroppens rörelse ut mot världen. Det är också en plats där omvårdnad sker som i sin tur stödjer vardagslivet för personer med demens, särskilt för dem som lever ensamma med demens. Detta visar på behovet av att tänka om i praktiken vad det gäller omvårdnaden, där ”omvårdnad i grannskapet” som en modell med ett livsvärldsperspektiv behövs i dialog med medborgarna.

Abstract [bs]

Pozadina: Nedavni trend demencije ogleda se u ovome da osobe koje žive sa demencijom ostanu u kući ili u susjedstvu, ali još uvijek nije poznato mnogo u široj perspektivi koju nude ta susjedstva kao svakodnevno mjesto povezivanja, medicinske njege, te samog značaja u životu onih koji žive sa demencijom.

Ciljevi: Cilj je istražiti susjedstvo kao svakodnevno mjesto boravka za ljude koji žive od demencije, te kao drugo istražiti susjedstva kao mjesta gdje bi se pružala medicinska njega.

Metode i dizajni: Ukupno pet studija uključeno je u rad sa kvantitativnim i kvalitativnim dizajnom. Studija I imala je istraživački i opisni dizajn. Populacija od 17. 405 ljudi sa dijagnozom demencije bila je identifikovana, te usklađena sa podacima o kućnoj njezi i mjestu prebivališta, a zatim povezana sa tri općine: Östergötland, Štokholm i Vasterboten. Studija II imala je fenomenološki dizajn gdje je 14 osoba koje žive sa demencijom u porodičnoj kuci učestovalo u Östergötlandu u intervju pri šetnji. Studija III imala je induktivni i istraživački kvalitativni dizajn koji je uključivao 14 ljudi iz porodičnog domaćinstva koji žive sami sa demencijom u Engleskoj, Škotskoj i Švedskoj, uključujući više metoda prikupljanja podataka. Studija IV imala je induktivni i istraživački kvalitativni dizajn koji je obuhvatio 22 osobe koje žive, ili imaju lično i profesionalno iskustvo sa demencijom, gdje su se koristili pojedinačni i grupni intervju. Studija V imala je induktivni i istraživački kvalitativni dizajn gdje je uljućeno ukupno 18 medicinskih sestara, a kao glavna metoda za prikupljanje podataka korištena je metoda praćenja i posmatranja.

Završni rezultati: U studiji I, 72% od 17. 405 ljudi koji su imali demenciju živjeli su porodičnim kućama a 28% u starački domovima. Ukupno 52% od 17. 405 ljudi koji žive sa demencijom u tri općine su Östergötland, Štokholm i Vasterboten žive sami. Studija II otkrila je kako svakodnevna šetanja je sastavni dio njihovih aktivnosti koje su im pomogle u životu sa demencijom. Može se reći da je boravak na otvorenom, te povezivanje sa prirodom je vrlo praktično za ljude koji žive sa demencijom. Susjedstvo je često opisano kao socijalni kontekst, iako su neki učesnici u istraživanju koji žive sami otkrili kako je njihov jedini društveni kontakt bio sa uposlenicima kućne njege. U studiji III učesnici ispitivanja u Engleskoj, Škotskoj i Švedskoj su sve svoje napore da ostanu povezani sa susjedstvom kako bi stvorili nove načine koji bi pomogli stvaranje novih veza i odnosa. Učestvovanjem u nekoliko aktivnosti (koje su u Velikoj Britaniji omogućile dobrotvorne i slobodne organizacije, a u Švedskoj općine) stvorene su veze i prijateljstva. Međutim, utjecaj predrasuda povezanih s demencijom, što su i naglašavali sudionici, vodilo je kao iskustvu samoće i usamljenosti. Uprkos utjecaju predrasuda, učesnici su preuzeli kontrolunad svojim životima, te su tražili nove svakodnevne društvene veze u susjedstvu, ne pokazujući tako pasivnost prema svakodnevnim izazovima s kojima se susreću. U studiji IV učesnici su razgovarali o predrasudama o demenciji u zajednici. Ljudi koji žive sa demencijom često nisu uvaženi kao aktivni članovi koji mogu doprinijeti zajednici. Kako bi održali svoje uloge u zajednici vrlo je bitno da ostanu društveno aktivni. Učesnici sa različitim iskustvom demencije izrazili su želju da se centri za svakodnevnu njegu i timovi više baziraju kao unapređenju njege i zdravlja, kao i da se akcenat stavi na osobu za demencijom. Na kraju, u studiji V medicinske sestre su se borile sa općeprihvaćenim stavom o njima i njihovoj ulozi, te njihovom radnom mjestu u sistemu zdravstvene zaštite, opisujući to kao nevidljivo. Zadaci i odgovornosti medicinskih sestara prebacivali su se na pomoćne sestre, komšije i članove porodica prema društveno-ekonomskom nivou opštine. Unatoč tome, medicinske sestre su očito bile dio susjedstva. Iskustva, odnosno pronalasci u ovoj tezi integrisani su u kombinovanu analizu prema pet tematski obrađenih studija, kako bi se dostigao sveobuhvatan prikaz iskustava u susjedstvu kao svakodnevnom mjestu, te mjestu zdravstvene podrške u kontekstu demencije. Iz ove analize pojavilo se pet glavnih tema (kao i tri podteme): (1) povezanost sa susjedstvom; (2) svakodnevne aktivnosti promovišu zdravlje i dobrobit; (3) mogućnosti za socijalne veze; (4) tretiranje kao aktivne građane; (5) susjedstvo je mjesto za medicinske prakse neprekidno traju. Analize pokazuju kako se susjedstvo ne opisuje samo kao prohodno, socijalno i građansko polje u kontekstu demencije, već kao i mjesto gdje medicinske prakse neprekidno traju (studije II, III, IV i V), jer većina ljudi s demencijom žive u običnom domaćinstvu (studija I).

Zaključak: Teza predstavlja nove temelje i znanja, kako bi se lakše razumio pojam susjedstva kao svakodnevnog mjesta za život, kao i njege kroz nove objektive razumijevanja. Susjedstvo bi se moglo shvatiti kao mjesto spojeno vezama koje ljudi aktivno potražuju gdje se značenje mjesta spaja sa kretanjem tijela kroz svijet. To je također mjesto gdje je svakodnevno obezbjeđena njega za ljude koji žive sa demencijom, posebno za one koji žive sami. Ovo ukazuje na potrebu da se preispita medicinska praksa, gdje se ‘’njega u susjedstvima’’ kao formalni model sa životnom perspektivom treba uspostaviti u dijalogu sa građanima.

sted, utgiver, år, opplag, sider
Linköping: Linköping University Electronic Press, 2019. , s. 98
Serie
Linköping University Medical Dissertations, ISSN 0345-0082 ; 1711
Emneord [en]
dementia, living alone, neighbourhood, neighbourhood nursing, social connections
HSV kategori
Identifikatorer
URN: urn:nbn:se:liu:diva-162835DOI: 10.3384/diss.diva-162835ISBN: 9789179299705 (tryckt)OAI: oai:DiVA.org:liu-162835DiVA, id: diva2:1381235
Disputas
2020-02-07, K1, Kåkenhus, Campus Norrköping, Norrköping, 13:00 (svensk)
Opponent
Veileder
Forskningsfinansiär
AFA Insurance
Merknad

Ytterligare forskningsfinansiärer: Swedish Riksbankens Jubileumsfond, Economic and Social Research Council (ESRC), National Institute for HealthResearch (NIHR), Norrköping Municipality Research and Development Fund (Norrköpings fond för forskning och utveckling), County Council of Östergötland, Linköping University from its strategic research fund for Health Care and Welfare.

Tilgjengelig fra: 2019-12-20 Laget: 2019-12-20 Sist oppdatert: 2020-01-13bibliografisk kontrollert
Delarbeid
1. People diagnosed with dementia in Sweden: What type of home care services and housing are they granted? A cross-sectional study
Åpne denne publikasjonen i ny fane eller vindu >>People diagnosed with dementia in Sweden: What type of home care services and housing are they granted? A cross-sectional study
2019 (engelsk)Inngår i: Scandinavian Journal of Public Health, ISSN 1403-4948, E-ISSN 1651-1905, Vol. 47, nr 2, s. 229-239Artikkel i tidsskrift (Fagfellevurdert) Published
Abstract [en]

AIMS: This study aims to examine what types of home care services and housing are granted to people with a dementia diagnosis and how these types are associated with socio-demographic factors (sex, age, marital status, native or foreign born, and regional area).

METHODS: A cross-sectional study of all people diagnosed with dementia in three Swedish counties was conducted from the medical records in 2012. Logistic regression analysis was carried out to investigate associations between home care services and housing and socio-demographic variables.

RESULTS: In total, 17,405 people had a dementia diagnosis, and the majority were women, aged 80+ years, and unmarried. Some 72% were living in ordinary housing and 28% lived in special housing. Of those who lived in ordinary housing, 50% did not receive any home care service. Not receiving any type of home care services was less common for older people and was also associated with being married and living in rural municipalities. The most common home care services granted were home help and personal care. Special housing was more common for older people, unmarried persons, and those living in rural municipalities.

CONCLUSIONS: Most people with a dementia diagnosis were living in ordinary housing, and, surprisingly, half of those did not receive any type of home care service. This knowledge is essential for making the living conditions and needs of people living with dementia more visible and to provide good home care services for people with dementia and their families.

sted, utgiver, år, opplag, sider
Sage Publications, 2019
Emneord
Home care services, cross-sectional study, dementia, foreign born, ordinary housing, special housing
HSV kategori
Identifikatorer
urn:nbn:se:liu:diva-146049 (URN)10.1177/1403494818755600 (DOI)000462758700019 ()29409432 (PubMedID)2-s2.0-85042217866 (Scopus ID)
Tilgjengelig fra: 2018-03-23 Laget: 2018-03-23 Sist oppdatert: 2019-12-20bibliografisk kontrollert
2. 'Overjoyed that I can go outside': Using walking interviews to learn about the lived experience and meaning of neighbourhood for people living with dementia.
Åpne denne publikasjonen i ny fane eller vindu >>'Overjoyed that I can go outside': Using walking interviews to learn about the lived experience and meaning of neighbourhood for people living with dementia.
2018 (engelsk)Inngår i: Dementia, ISSN 1471-3012, E-ISSN 1741-2684, artikkel-id 1471301218817453Artikkel i tidsskrift (Fagfellevurdert) Epub ahead of print
Abstract [en]

This study explores the relationships between people living with dementia and their neighbourhood as they venture out from home on a regular and often routine basis. Here, we report findings from the Swedish field site of an international 5-year project: Neighbourhoods: our people, our places. The aims of this study were to investigate the lived experience of the neighbourhood for people with dementia and through this to better understand the meaning that neighbourhood held for the participants. In this study, we focus on the walking interviews which were conducted with 14 community-dwelling people with dementia (11 men and 3 women) and were analysed using an interpretative phenomenological method. Four themes were revealed from these interviews: life narratives embedded within neighbourhood; the support of selfhood and wellbeing through movement; the neighbourhood as an immediate social context; and restorative connections to nature. These themes were distilled into the 'essence' of what neighbourhood meant for the people we interviewed: A walkable area of subjective significance and social opportunity in which to move freely and feel rejuvenated. We have found that the neighbourhood for community-dwelling people with dementia holds a sense of attachment and offers the potential for freedom of movement. Our research indicates that a dementia diagnosis doesn't necessarily reduce this freedom of movement. The implications for practice and policy are considered: future research should explore and pay closer attention to the diverse living conditions of people living with dementia, and not least the particular challenges faced by people living alone with dementia.

Emneord
community-dwelling, dementia, interpretative phenomenology, lived experiences, neighbourhood, walking interviews
HSV kategori
Identifikatorer
urn:nbn:se:liu:diva-153897 (URN)10.1177/1471301218817453 (DOI)30541394 (PubMedID)
Tilgjengelig fra: 2019-01-18 Laget: 2019-01-18 Sist oppdatert: 2019-12-20
3. ‘It's our pleasure, we count cars here’: an exploration of the ‘neighbourhood-based connections’ for people living alone with dementia
Åpne denne publikasjonen i ny fane eller vindu >>‘It's our pleasure, we count cars here’: an exploration of the ‘neighbourhood-based connections’ for people living alone with dementia
Vise andre…
2019 (engelsk)Inngår i: Ageing & Society, ISSN 0144-686X, E-ISSN 1469-1779, Vol. 9, s. 1-26Artikkel i tidsskrift (Fagfellevurdert) Epub ahead of print
Abstract [en]

The extent of social isolation experienced by people living with dementia who reside in the community has been well acknowledged, yet little is known about how people living alone with dementia maintain neighbourhood-based connections. The purpose of this study is to examine the experiences of people with dementia who live alone, focusing upon how they establish social networks and relationships in a neighbourhood context, and how they are supported to maintain this social context within everyday life. Multiple data collection methods were used including, semi-structured interviews, walking interviews, guided home tours and social network mapping, which were conducted with 14 community-dwelling people living alone with dementia (11 women and three men) situated across the three international study sites in England, Scotland and Sweden. Data were analysed using thematic analysis. The analysis revealed four main themes: (a) making the effort to stay connected; (b) befriending by organisations and facilitated friendships; (c) the quiet neighbourhood atmosphere; and (d) changing social connections. The analysis suggests that people with dementia who live alone were active agents who took control to find and maintain relationships and social networks in the neighbourhood. Our findings indicate the need to raise awareness about this specific group in both policy and practice, and to find creative ways to help people connect through everyday activities and by spontaneous encounters in the neighbourhood.

sted, utgiver, år, opplag, sider
Cambridge University Press, 2019
Emneord
Dementia, living alone, neighbourhood, community, qualitative research, social networks, relationships, solitude
HSV kategori
Identifikatorer
urn:nbn:se:liu:diva-160696 (URN)10.1017/s0144686x19001259 (DOI)
Tilgjengelig fra: 2019-10-02 Laget: 2019-10-02 Sist oppdatert: 2019-12-20bibliografisk kontrollert

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