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Motivating and discouraging factors with being a support contact in the dementia care sector:: a grounded theory study
Nordic Council of Ministers, Nordic School of Public Health NHV. Ageing and Health Norwegian Centre for Research, Education and Service Development Tønsberg, Norway.
Nordic Council of Ministers, Nordic School of Public Health NHV.
Nordic Council of Ministers, Nordic School of Public Health NHV. Ersta Sk ö ndal , University Collage , Sweden.
2012 (English)In: Scandinavian Journal of Disability Research, ISSN 1501-7419, E-ISSN 1745-3011, Vol. 15, no 1Article in journal (Refereed) Published
Abstract [en]

Background: People with dementia need different forms of assistance as the disorder progresses. In Norway, support contacts work as ‘paid friends’ and their role can be compared with respite carers or voluntary workers' in other Western countries. Support contacts may be helpful within the dementia sector, especially in the early stages of the disorder, though they are rarely used.

Aim: The aim of this study was to find out how the support contacts perceive their work.

Method: Grounded theory, a qualitative method, with interviews of 19 participants (14 women and five men aged 40–75 years) during 2009–2010, from 12 local authorities.

Findings: This study describes the participants' motives for becoming a support contact and their encouraging and discouraging experiences while being a support contact, expressed as four sets of opposites; flexibility vs rigidity; being compensated vs feeling used; affiliation vs abandonment; and satisfaction vs lack of satisfaction.

Conclusion: Greater flexibility, adequate compensation, a sense of affiliation and satisfaction, together with potential for building relationship with families, are factors that will encourage dementia care supporters to continue with their work.

Place, publisher, year, edition, pages
2012. Vol. 15, no 1
Keyword [en]
dementia, health promotion, respite care, voluntary workers' experiences
National Category
Medical and Health Sciences
Identifiers
URN: urn:nbn:se:norden:org:diva-3761DOI: 10.1080/15017419.2012.667000OAI: oai:DiVA.org:norden-3761DiVA: diva2:787144
Available from: 2015-02-09 Created: 2015-02-09 Last updated: 2015-02-09Bibliographically approved
In thesis
1. Public Health and Dementia - with focus on access to society
Open this publication in new window or tab >>Public Health and Dementia - with focus on access to society
2012 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

Aim: The overall aim of this thesis is to learn more about how to contribute to improving the daily lives of persons with dementia and those of their carers, and to increase these people’s participation in society.

Methods: The thesis comprises four studies carried out between2003and2011. Study Iwas based on qualitative interviews with 20 persons with early-onset dementia living in the Southern Norway. Study II was a qualitative study with interviews of 19 support contacts,from the Southern Norway. Study III was also based on interviews, in this study with 35 administrators in local authorities, from 32 Norwegian rural and urban local authorities.Study IV was an evaluation study of an intervention for carers of people with dementia and datawere obtained in three steps; (1) a self-derived questionnaires with space for comments, completed by 45 carers after the intervention and 12 months after the starting point of the intervention; (2) interviews with 13 carers 12 months after the starting point of the intervention and analysed together with the comments from the evaluation questionnaires; and (3) a new intervention for carers of younger persons with dementia was developed based onthe findings from the two first steps. The new intervention was evaluated with a self-report questionnaire completed by the carers with space for comments based on the findings from the two first steps. The questionnaire was completed by 48 carers after the new intervention and 12 months after the starting point of this intervention.

Main findings: StudyI describes how people with dementia experience living with dementia, their experiences of the process towards a dementia diagnosisand their descriptions of how they try to maintain their “quality of life”. Study II describes how support contacts perceive their work in dementia care. The study also shows the support contacts’motives for becoming a support contact and their encouraging and discouraging experiences while being a support contact. Furthermore, Study III describes the variation in the process that leads or does not lead to the use of support contacts as a service offered to families with dementia. The administrators’ skills, the accessibilityand management of the service are factorsthat influence this process of offering families with dementia a support contact.Study IV showsthat carers rated the original intervention as beingbeneficial for them,a benefit that remained. These findingscorrespondwith the findings from the interviews. Study IV also shows that the carers of younger persons with dementia benefited from the new intervention aimed at carers of younger people with dementia, a benefit that remained. The carershad valuable proposals for further interventions.

Conclusion: This thesis shows us that the opinions of these families, their supporters and those of other health personnel should not be overlooked when developing services in order to facilitate the provision of the chance to participate in society to families with dementia

Abstract [no]

Mål: Hovedmålet med denne avhandlingen er å få mer kunnskaper om hvordan man kan legge til rette for å bedre hverdagen tilpersoner med demens og deres pårørende,samthvordan man kan bidra til å øke deres muligheter til deltagelse i samfunnet.

Metode: Avhandlingen består av fire studier som ble gjennomført i tidsrommet 2003-2011. Studie Ivar basert på kvalitative intervjuer med 20 personer som hadde fått diagnosen demens før de fylte 65 år, som kom fra Sør-Norge. Studie II var en kvalitativ studie hvor 19 støttekontakter ble intervjuet,også disse ble inkludert fraSør-Norge.StudieIII baserte segpå intervjuer, hvor 35 ledere fra 32 norske kommunerble inkludert. Disse kommunenerepresenterte store og små byer og bygder.Studie IV var en intervensjonsstudie for pårørende til personer med demens, og data var innhentet gjennom tre steg; (1) et selvutfyllende spørreskjema med plass til kommentarer, som ble fylt ut av 45 pårørende etter intervensjonen og 12 måneder etter oppstart av intervensjonen; (2) intervjuer av 13 pårørende 12 måneder etter oppstart av intervensjonen,og analysert sammen med kommentarer fra spørreskjemaene; og(3) basert på funnene ide to første stegene ble en nyintervensjonfor pårørende til yngre personer med demens(< 65 år) utviklet. Evalueringsskjemaene til denne nye intervensjonen ble utviklet på bakgrunn av funn fra de to første stegene i Studie IV. Skjemaene blefylt ut av 47 pårørende etterintervensjonen og 12 måneder etter oppstartav intervensjonen.Disse skjemaene hadde også plass til kommentarer.

Hovedfunn: Studie I beskriverhvordan mennesker med demens opplever å leve med demens og deres erfaringer knyttet til prosess som leder til å få stillet en demens diagnosen. Studien viserogsåhvordan de forsøker å opprettholde livskvalitet i det daglige. Studie II beskriver hvordan støttekontakter opplever deres arbeidsoppgaver i demensomsorgen. Studien viserogså støttekontaktenes motiver for å bli støttekontakt, og motiverendeog demotiverende erfaringer knyttet til det å være støttekontakt.Studie III beskrivervariasjonen i prosessen som leder til eller ikke leder til at støttekontakt tjenesten blir tildelt familier med demens. Lederes kunnskaper, organisering avkommunene og tilgjengelighet av tjenesten er variasjoner som påvirker tildelingen av en støttekontakt.Studie IV viser at pårørende hadde nytte av den opprinnelige intervensjonenogeffekten forble. Disse funn samsvarermed funn fra intervjuene med pårørende. Studien viser også at den nye intervensjonen for pårørende til yngre personer med demens var nyttig for disse pårørende og denne effekten forble. Pårørende forbedret intervensjonene og de hadde verdifulle forslag til videre utvikling av intervensjonene.

Konklusjon: Denne avhandlingen viser at disse familiene, støttekontaktene og annet helsepersonells meninger ikke må bli oversett når en skalutvikle tjenestetilbud og tilrettelegge tjenester slik at det er mulig for familier med demens å delta i samfunne

Place, publisher, year, edition, pages
Nordic School of Public Health NHV Göteborg, Sweden, 2012. 71 p.
Series
NHV Reports and Doctor of Public Health-Theses, ISSN 0283-1961 ; NHV Report 2012:6
Keyword
accessibility, dementia, health promotion, services, U niversal Design, ilgjengelighet, demens, helsefremmende arbeid, tjenester, Universell Design
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:norden:org:diva-3763 (URN)978-91-86739-34-8 (ISBN)
Public defence
2012-06-20, Nordic School of Public Health NHV, Göteborg, Sweden, 13:00 (Norwegian)
Opponent
Supervisors
Available from: 2015-02-09 Created: 2015-02-09 Last updated: 2015-02-09Bibliographically approved

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