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  • 101.
    Magnusson, Lennart
    et al.
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Hanson, Elizabeth
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Larsson Skoglund, Annica
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Ilett, Richard
    Sennemark, Eva
    Barbabella, Francesco
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Gough, Ritva
    Kvalitet i äldreomsorg ur ett anhörigperspektiv2016Report (Other academic)
    Abstract [sv]

    Nationellt kompetenscentrum anhöriga, Nka, har tagit fram rapporten "Kvalitet i äldreomsorg ur ett anhörigperspektiv" på uppdrag från Socialdepartementet. Rapporten ingår i den nationella kvalitetsplanen för äldreomsorgen.I rapporten framgår det tydligt att trygghet är själva förutsättningen för att kunna skapa bästa och mesta möjliga välbefinnande för anhöriga och äldre närstående. Andra viktiga byggstenar är tillhörighet, delaktighet och betydelsefullhet. Det finns också ett behov av kompetensutveckling – både i verksamheterna och hos de anhöriga. I kunskapssammanställningen framgår också att anhöriga och äldre närstående tenderar att bemötas och behandlas olika beroende på den utbildning, arbete och social position personen har. Detsamma gäller kön, etnisk tillhörighet, trosuppfattning, funktionsnedsättning, sexuell läggning och ålder. Rapporten tar upp en rad åtgärder för att utveckla kvaliteten i vården och omsorgen för äldre ur ett anhörigperspektiv.

  • 102.
    Magnusson, Lennart
    et al.
    University of Borås, Sweden.
    Hanson, Elizabeth
    University of Borås, Sweden.
    Nolan, Mike
    University of Borås, Sweden.
    Assisting carers using the ACTION model for working with family carers2002In: British Journal of Nursing, ISSN 0966-0461, E-ISSN 2052-2819, Vol. 11, no 11, p. 759-763Article in journal (Refereed)
    Abstract [en]

    This article is the first in a series of four that describes recent developments in Sweden aimed at promoting partnerships between older people, their families and formal service providers. The focus in this article is on the use of information and communication technology (ICT) to help family carers to be more prepared for their caregiving role. It is based upon the PREP (preparedness, enrichment and predictability) model of nursing intervention (Archbold et al, 1995) which is applied in the context of a major ICT project called ACTION (Assisting Carers using Telematics Interventions to meet Older persons' Needs). The way in which ACTION has developed is briefly considered and the range of interventions used is described. Subsequent articles in the series reflect upon users' perceptions of the acceptability of the ACTION approach and a case study of the benefits of ACTION is also presented. Finally, the series concludes with an article which outlines the development of a call centre which is used to complement and augment the ACTION service.

  • 103.
    Magnusson, Lennart
    et al.
    University of Kalmar, eHealth Institute, School of Human Sciences, University of Kalmar,.
    Hanson, Elizabeth
    University of Kalmar, eHealth Institute, School of Human Sciences, University of Kalmar,.
    Walkhamre, Britt-Marie
    Borås stad.
    Larsson Skoglund, Annica
    FoU Sjuhärad Välfärd.
    Införande av en modell och instrument för att kartlägga behov och planera ett individuellt anpassat stöd för anhörigvårdare i Borås Stad - slutrapport för perioden 060118 - 0812312009Report (Other academic)
  • 104.
    Magnusson, Lennart
    et al.
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Sandman, Lars
    University of Borås, Sweden.
    Rosén, Karl Gustav
    University of Borås, Sweden.
    Hanson, Elizabeth
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Extended safety and support systems for people with dementia living at home2014In: Journal of Assistive Technologies, ISSN 1754-9450, E-ISSN 2042-8723, Vol. 8, no 4, p. 188-206Article in journal (Refereed)
    Abstract [en]

    Purpose– The purpose of this paper is to highlight the complexity surrounding the implementation of advanced electronic tracking, communication and emergency response technologies, namely, an extended safety and support (ESS) system for people with dementia (pwd) living at home. Results are presented from a Swedish demonstration study (2011-2012) conducted in 24 municipalities.

    Design/methodology/approach– It is a descriptive intervention study with a pre-post test design. Questionnaires were administered to pwd, carers and professionals at the outset and eight months later. ESS logging data were analyzed.

    Findings– ESS usage rates varied widely. A total of 650 alerts were triggered, mainly when the pwd was outdoors. Activities were reduced amongst pwd, most likely due to a progression of their disease. Carers noted that pwd were more independent than previously on those occasions when they engaged in outdoor activities. Staff considered that nearly half of pwd could remain living at home due to the ESS, compared with a third amongst carers. In total, 50 per cent of carers felt it was justified to equip their relative with an ESS without their explicit consent, compared to one in eight staff.

    Research limitations/implications– A limitation is the amount of missing data and high drop- out rates. Researchers should recruit pwd earlier in their illness trajectory. A mixed-methods approach to data collection is advisable.

    Practical implications– Carers played a crucial role in the adoption of ESS. Staff training/supervision about assistive devices and services is recommended.Social implications– Overall, use of ESS for pwd living at home was not an ethical problem.

    Originality/value– The study included key stakeholder groups and a detailed ethical analysis was conducted.

  • 105.
    Malm, Camilla
    et al.
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Andersson, Stefan
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Joenson, Håkan
    Lund University, Sweden.
    Magnusson, Lennart
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Hanson, Elizabeth
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Moving beyond the first response phenomenon Exploring carers' views and experiences of being involved in research and development work2019In: International journal of sociology and social policy, ISSN 0144-333X, E-ISSN 1758-6720, Vol. 39, no 7-8, p. 627-643Article in journal (Refereed)
    Abstract [en]

    Purpose In Sweden, the care of older people and people with disabilities is increasingly carried out by informal carers, often family members, who are unpaid and outside a professional or formal framework. While there is an increasing awareness of the role of carers within service systems and their own needs for support, their involvement in research is underexplored. The purpose of this paper is to explore carers' views and experiences of involvement in research and development (R&D) work. Design/methodology/approach A qualitative study was conducted, consisting of 12 individual interviews with carers from different local Swedish carer organizations. Findings Core findings included carers' discussions of the perceived challenges and benefits of their involvement in research, both generally and more specifically, in the context of their involvement in the development of a national carer strategy. Research limitations/implications - Limitations included the relative lack of male carer participants and the convenience sample. Practical implications - Authentic carer involvement in research demands a high level of engagement from researchers during the entire research process. The provided CRAC framework, with reference to the themes community, reciprocity, advocacy and circumstantiality, may help researchers to understand and interpret carer involvement in research and provide the prerequisites for their involvement. Originality/value There is a dearth of studies that systematically examine carer involvement in research. This paper attempts to redress this gap by providing a nuanced analysis of carer involvement in R&D work from the perspective of carers themselves.

  • 106.
    Malm, Camilla
    et al.
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. Swedish Family Care Competence Centre (NKA), Sweden.
    Hanson, Elizabeth
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. Swedish Family Care Competence Centre (NKA), Sweden.
    Andersson, Stefan
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. Swedish Family Care Competence Centre (NKA), Sweden.
    Carers' views and experiences of the co-creation of a national carer strategy2019In: Presented at the International Association of Gerontology and Geriatrics European Region Congress 2019, Gothenburg, Sweden, May 23-25, 2019, 2019, 2019Conference paper (Refereed)
    Abstract [en]

    In Sweden, increasingly the care of older people is carried out by informal/family carers. That is, family members- adult children and spouses, but also relatives and friends. In the move towards people-centred, integrated care systems, there is a growing argument for carers to be seen as partners in care alongside the person they are caring for and health and care staff. Whilst there is an increasing awareness of carers’ role within service systems and their own needs for support, their involvement in research has not been systematically explored.   One of the university nodes within the UserAge research programme, focuses on this theme.

     This presentation will examine recent research to create a national carer strategy in Sweden. In particular, to examine carers’ involvement during the research and development (R&D) process. An overview of the initial stages of the design process will be given drawing on the theoretical foundations for the work with reference to the temporal model of family caring and the carer as expert model.  The presentation will focus on findings from a  qualitative study (n=12) that explored how carers perceived R&D work and their own experiences of being involved in the development of a national carer strategy. Interview participants were purposively selected from those carers that participated in focus group interviews conducted in the earlier design phase. Main findings include the challenges and benefits of carer involvement in research and their aspirations and concerns regarding their involvement in research generally, and with regards to the national carer strategy.

     The discussion will examine the level of carers’ involvement and the significance of their involvement in the co-creation process of the national carer strategy. Concluding comments will highlight that genuine carer involvement in research also demands a high level of engagement from involved researchers and policymakers during the entire process.

  • 107. Mathény, Gunilla
    et al.
    Olofsson, Charlotte
    Rutbäck, Sofia
    Hanson, Elizabeth
    Linnaeus University, Faculty of Health, Social Work and Behavioural Sciences, School of Health and Caring Sciences.
    Teknikstöd för yrkesverksamma anhöriga: en behovsstudie2012Report (Other academic)
    Abstract [sv]

    Att vara yrkesarbetande och anhörig kan vara en utsatt situation. Även om de flesta väljer att vårda eller stötta sina närstående kan uppgiften medföra att den anhörige själv hamnar i farozonen för att drabbas av ohälsa. I det här projektet har yrkesverksamma anhörigas behov av hjälpmedel och ny teknik inventerats. Projektet genomfördes på två orter i Sverige med en metod där anhöriga har varit delaktiga i varje steg. För att undersöka om, och i så fall vilka, produkter, tjänster och ny teknik som kan utgöra ett stöd föryrkesverksamma personer som stödjer eller vårdar, samt vilkametoder som kan användas för att nå dessa anhöriga med kunskapom ny teknik, genomfördes ett projekt i två steg:Steg 1: Individuella intervjuer, inledande workshop,hjälpmedelsvisning och avslutande workshop i Luleå och Stockholm Steg 2: två efterföljande delstudier:‐ i Luleå gjordes ett pilotprojekt som inriktats på attundersöka intresset för en hemsida, där anhöriga själva kan "tipsa" varandra om smarta lösningar på vardagsproblem ‐ i Stockholm gjordes en undersökning angående anhörigaslärande och motivation i relation till användhet av olika produkter, tjänster och ny teknik. Resultatet visar att produkter, hjälpmedel och ny teknik blir ett väl fungerande anhörigstöd om man också inkluderar den anhöriges separata behov vid förskrivningen. Dessutom måste den anhörige i samband med detta erbjudas insatser som underlättar hennes/hans situation som helhet. Vidare framkom att anhöriga upplevde att ett alltför stort ansvar, både för att söka information om hjälpmedlen och för hur de fungerar, läggs på dem och att personal inom hela vård- och omsorgskedjan måste utveckla sitt samarbete för att anhörigas behov inte ska falla mellan stolarna. Studien visar också att hjälpmedel som inte upplevs som positivt eller känns motiverade för både den anhörige och den närstående inte kommer till användning. Dessa brister beror ofta på osäkerhet i hur hjälpmedlet ska användas. I undersökningsprocessen framkom att den inventeringsmetod som användes i projektet, det vill säga att göra de anhöriga delaktiga i varje steg samt att främja erfarenhetsutbyte i grupp mellan anhöriga och professionella, är ett effektivt sätt att ge och vidga anhörigas kunskap inom området. Därmed kan undersökningsmetoden i sig sägas utgöra en modell för hur anhöriga kan nås av stöd genom produkter, tjänster och ny teknik.

  • 108.
    Månsson Lexell, Eva
    et al.
    Lund University, Sweden.
    Pettersson, Cecilia
    Lund University, Sweden.
    Hanson, Elizabeth
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Interventions for stroke family caregivers: a systematic review of the literature2015In: Presented at the The 6th International Carers Conference - Care and caring: future proofing the new demographics, Gothenburg, Sweden, September 3-6, 2015, 2015Conference paper (Refereed)
  • 109.
    Nolan, Mike
    et al.
    University of Sheffield, UK.
    Hanson, Elizabeth
    University of Kalmar, eHealth Institute, School of Human Sciences, University of Kalmar,.
    Grant, Gordon
    Sheffield Hallam University, UK.
    Keady, John
    The University of Manchester/Bolton, Salford and Trafford Mental Health NHS Trust, UK.
    User participation in health and social care research: Voies, values and evaluation2007 (ed. 1)Book (Other academic)
  • 110.
    Nordqvist, Eva
    et al.
    Swedish Family Care Competence Centre (NKA).
    Eliasson, Christoffer
    Swedish Family Care Competence Centre (NKA).
    Hanson, Elizabeth
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. Swedish Family Care Competence Centre (NKA).
    Unga omsorgsgivare med minoritets- och utländsk bakgrund2016Report (Other academic)
    Abstract [sv]

    Inledning och utgångspunkter

    Nationellt kompetenscentrum anhöriga är idag del av det nationella utvecklingsuppdraget kring Barn som anhöriga på uppdrag av Socialstyrelsen. Barn som anhöriga och unga omsorgsgivare är två skilda begrepp men det förstnämnda kan ses som det mer övergripande. I anpassningen av BME-begreppet (Black and Minority Ethnic) har vi valt att övers- ätta det till unga omsorgsgivare med minoritets- och utländsk bakgrund kopplat till ett interkulturellt perspektiv (Hansson, 2012).

    Unga omsorgsgivare och Barn som anhöriga i en svensk kontext

    I lagrummet som hanterar barn som anhöriga och unga omsorgsgivare är det främst socialtjänstlagen, hälso- och sjukvårdslagen men så även FNs konvention om barnets rättigheter.

    Forsknings- och kunskapsläge

    Vår slutsats är att det finns en mycket stor brist på forskning inom detta område i Sverige och vi har inte funnit någon svensk forskning som belyser denna aspekt.

    Svårigheter och begränsningar

    I vår studie och i kontakt med verksamheter och målgruppen har vi erfarit stora utmaningar såsom ”Gatekeepers” kring målgruppen samt en svårighet i att få till tillträde till verksamheter pga. det pågående flyktingmottagandet i Sverige.

    Resultat – intervjuer med målgrupp

    I de två intervjuer som genomfördes i projektet finns det några återkommande synpunkter och önskemål:

    • - Förstärkt stöd i sin roll som ung omsorgsgivare
    • - Att bli sedd, frågad och lyssnad på
    • - Vikten av ett socialt nätverk
    • - Stöd för att åstadkomma en fungerande skolgång
    • - Positiva erfarenheter av att ta ansvar/upplevd delaktighet
    • - Ett förbättrat bemötande och förstående från myndigheter - Familjens betydelse

    Resultat – organisationer och myndigheter

    I studien har vi kontaktat över 35 olika organisationer och aktörer. Vi har inte funnit en enda verksamhet som direkt riktar sig till målgruppen och de som indirekt vänder sig till målgruppen saknar ofta en strategi eller upplever svårigheter i att nå ut till den specifika målgruppen.

  • 111.
    Sandvide, Åsa
    et al.
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Hanson, Elizabeth
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    de Abreu, Wilson
    Jackson, Graham
    Waugh, Anna
    MacRae, Rhoda
    Tolson, Debbie
    Dementia Palliare: Literature Review – Experiences of Advanced Dementia2015Report (Other academic)
  • 112.
    Santini, Sara
    et al.
    National Institute of Health and Science on Ageing (INRCA), Italy.
    Socci, Marco
    National Institute of Health and Science on Ageing (INRCA), Italy.
    Boccaletti, Licia
    Anziani e non solo Soc. Coop., Italy.
    D’Amen, Barbara
    National Institute of Health and Science on Ageing (INRCA), Italy.
    Becker, Saul
    University of Sussex, UK.
    Lewis, Feylyn
    University of Sussex, UK.
    Hlebec, Valentina
    University of Ljubljana, Slovenia.
    Hanson, Elizabeth
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Adolescent young caregivers of older, sick or disabled family members: evidence from the ‘ME-WE’ European project online survey in Italy2019In: Presented at the International Association of Gerontology and Geriatrics European Region Congress 2019, Gothenburg, Sweden, May 23-25, 2019, 2019Conference paper (Refereed)
    Abstract [en]

    Aims: Several studies at national level show that the phenomenon of Adolescent Young Caregivers (AYCs) of older, sick or disabled family members is increasing, despite the fact that European data are missing. Having family care responsibilities can compromise AYC’s mental well-being, school performance, training, work opportunities and social inclusion. The Horizon 2020 “ME-WE” project, aims at systematizing the knowledge about AYCs at European level and strengthening their resilience.

    Methods: About 3,000 adolescents (aged 15-17) were surveyed in 2018 in six European countries (Italy, Slovenia, Sweden, Switzerland, The Netherlands, UK) through an on-line questionnaire including demographic questions, the Multidimensional Assessment of Caring Activities Checklist, the Positive and Negative Outcomes of Caring Questionnaire and Kidscreen Questionnaire. The survey had the goal of examining the prevalence of AYCs in the six partner countries and outlining profiles, needs and preferences of European AYCs. Data were analysed through descriptive and inferential statistics.

    Results: In Italy, 243 (i.e. 27% out of 886 surveyed adolescents) were identified as AYCs, mainly females (62.1%). 60.5% of AYCs provided care for their grandparents (80 for grandfathers, 67 for grandmothers). Due to care responsibilities, 3.3% of Italian AYCs found it difficult to attend school and study with proficiency; 3,7% were bullied; 5.8% reported mental health problems (e.g. depression or anxiety). Only 7.8% received support connected with their caring role.  

    Conclusion: “ME-WE” represents the first systematic study on AYCs in Europe. Italian findings highlighted a notable proportion of AYCs of older people and that just a few of them received support, with negative effects on their mental well-being, school performance and social inclusion. In light of the above, tailored policies and interventions for enhancing Italian AYC’s resilience are needed as well as training for boosting educational and health practitioners’ capability of identifying and appropriately sup

  • 113.
    Savolainen, Liina
    et al.
    Chalmers University of Technology, Göteborg.
    Hanson, Elizabeth
    University of Kalmar, eHealth Institute, School of Human Sciences, University of Kalmar,.
    Magnusson, Lennart
    University of Kalmar, eHealth Institute, School of Human Sciences, University of Kalmar,.
    Gustavsson, Tomas
    Chalmers University of Technology, Göteborg.
    An Internet-based videoconferencing system for supporting frail elderly people and their carers2008In: Journal of Telemedicine and Telecare, ISSN 1357-633X, E-ISSN 1758-1109, Vol. 14, p. 79-82Article in journal (Refereed)
    Abstract [en]

    The ACTION project uses information and communication technologyto support frail elderly people and their family carers. Theaims are to enhance their quality of life, independence andpreparedness and to break social isolation. A videoconferencingsystem, connecting homes and a call centre, was used in a pilotstudy in 1997–2002. A re-designed system was brought intouse in late 2004 and over 60 new units were introduced duringthe first six months. The new system was evaluated with an interviewstudy and by data logging. Eight family users and four professionalcarers were interviewed. The family users had used the videophoneat least six times and they had had the equipment at home forat least two months. The average number of initiated calls peruser was 5.7 per month and the average call time per user was40 min per month. Seven of the users (88%) reported that thesystem very much reduced their sense of loneliness and isolation.The results of the evaluation were encouraging. There were severalfrequent users of videoconferencing. System quality was acceptablealthough a shorter audio delay would be desirable. The systemwas used regularly by the participants and it fulfilled itspurpose.

  • 114.
    Schmidt, Andrea
    et al.
    European Centre for Social Welfare Policy and Research, Austria.
    Carlos, Chiatti
    Italian National Institute of Health and Science on Aging (INRCA), Italy.
    Fry, Gary
    University of Leeds, UK.
    Hanson, Elizabeth
    Linnaeus University, Faculty of Health, Social Work and Behavioural Sciences, School of Health and Caring Sciences. Swedish National Family Care Competence Centre (SNFCCC), Sweden.
    Magnusson, Lennart
    Linnaeus University, Faculty of Health, Social Work and Behavioural Sciences, School of Health and Caring Sciences. Swedish National Family Care Competence Centre (SNFCCC), Sweden.
    Socci, Marco
    Italian National Institute of Health and Science on Aging (INRCA), Italy.
    Stückler, Andreas
    European Centre for Social Welfare Policy and Research, Austria.
    Széman, Zsuzsa
    Hungarian Academy of Sciences, Hungary.
    Barbabella, Francesco
    European Centre for Social Welfare Policy and Research, Austria.
    Hoffmann, Frédérique
    European Centre for Social Welfare Policy and Research, Austria.
    Lamura, Giovanni
    European Centre for Social Welfare Policy and Research, Austria.
    Deliverable 2.3: Analysis and Mapping of 52 ICT-based initiatives for caregivers2011Report (Other academic)
  • 115. Strömberg, A.
    et al.
    Motel-Klingebiel, A.
    Hanson, Elizabeth
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Poli, A.
    Aidermark, J.
    Self-care and technology in older people with long-term conditions: new challenges for ICT2016Conference paper (Other (popular science, discussion, etc.))
  • 116.
    Tolson, Debbie
    et al.
    University of the West of Scotland, UK.
    Fleming, Anne
    University of the West of Scotland, UK.
    Hanson, Elizabeth
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Abreu, Wilson
    Porto School of Nursing, Portugal.
    Lillo Crespo, Manuel
    University of Alicante, Spain.
    Macrae, Rhoda
    University of the West of Scotland, UK.
    Jackson, Graham
    University of the West of Scotland, UK.
    Hvalič Touzery, Simona
    Faculty of Healthcare Jesenice, Slovenia.
    Routasalo, Pirkko
    Turku University of Applied Sciences, Finland.
    Holmerová, Iva
    Charles University, Czech Republic.
    Achieving Prudent Dementia Care (Palliare): an International Policy and Practice Imperative2016In: International Journal of Integrated Care, ISSN 1568-4156, E-ISSN 1568-4156, Vol. 16, no 4, p. 1-11, article id 18Article in journal (Refereed)
    Abstract [en]

    This paper examines the provision of integrated advanced dementia care within seven European countries and critically reviews the potential contribution of the Prudent Healthcare perspective as a starting point for reform. Progressive efforts to innovate, promote quality and integrate care are tempered with the reality of resource constraints. Some policy makers in Europe and North America have turned their attention to the principles of Prudent Healthcare as a potential mechanism to maximise benefits for patients within available resources. As dementia progresses, living well requires increasing levels of support and care, people living with advanced dementia have complex health and social care needs, are highly dependent on others but are not yet at the terminal end stage of the condition. People with advanced dementia can benefit from a dementia specific palliative approach to care (Palliare), that helps them to live the best life possible for the months and often years they live with advanced dementia. It is also highly desirable to align policy innovations with integrated palliative care practice models and the education of the dementia workforce to accelerate informed improvements in advanced dementia care. There may be some coherence, at least superficially between Prudent Healthcare and integrated palliative care models such as Palliare. It is argued that for successful implementation, both require practitioners to be equipped with knowledge and skills and be empowered to deliver high quality care often within impoverished care environments. Adoption of the prudent perspective will however require development of a repertoire of approaches to hear the voice or proxy voice of people living with advanced dementia and to commit to the development and implementation of new evidence for advanced dementia practice. Evidence informing this policy debate draws upon contemporary literature and policy and the findings from research activities undertaken by the Palliare project supported through the Erasmus+ K2 Strategic Partnerships funding programme.

  • 117.
    Tolson, Debbie
    et al.
    Univ West Scotland, UK.
    Holmerova, Iva
    Charles Univ Prague, Czech Republic.
    Macrae, Rhoda
    Univ West Scotland, UK.
    Waugh, Anna
    Univ West Scotland, UK.
    Hvalic-Touzery, Simona
    Angela Boskin Fac Hlth Care, Slovenia.
    de Abreu, Wilson
    Porto Sch Nursing, Portugal.
    Lillo Crespo, Manuel
    Univ Alicante, Spain.
    Merta, Anne
    Turku Univ Appl Sci Ltd TUAS, Finland.
    Hanson, Elizabeth
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Improving Advanced Dementia Care: An Interprofessional Palliare Learning Framework2017In: Journal of the American Medical Directors Association, ISSN 1525-8610, E-ISSN 1538-9375, Vol. 18, no 7, p. 561-563Article in journal (Refereed)
  • 118. Torp, Steffen
    et al.
    Bing-Jonsson, PC
    Hanson, Elizabeth
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Experiences with using information and communication technology to build a multi-municipal support network for informal carers2013In: Informatics for Health and Social Care, ISSN 1753-8157, E-ISSN 1753-8165, Vol. 38, no 3, p. 265-279Article in journal (Refereed)
    Abstract [en]

    This multi-municipal intervention study explored whether informal carers of frail older people and disabled children living at home made use of information and communication technology (ICT) to gain knowledge about caring and to form informal support networks, thereby improving their health. Seventy-nine informal carers accessed web-based information about caring and an e-based discussion forum via their personal computers. They were able to maintain contact with each other using a web camera and via normal group meetings. After the first 12 months, 17 informal carers participated in focus group interviews and completed a short questionnaire. Four staff members were also interviewed. Participant carers who had prior experiences with a similar ICT-based support network reported greater satisfaction and more extensive use of the network than did participants with no such prior experience. It seems that infrequent usage of the service may be explained by too few other carers to identify with and inappropriate recruitment procedures. Nevertheless, carers of disabled children reported that the intervention had resulted in improved services across the participant municipalities. To achieve optimal effects of an ICT-based support network due attention must be given to recruitment processes and social environment building for which care practitioners require training and support.

  • 119.
    Torp, Steffen
    et al.
    Vestfold University College, Tønsberg, Norway.
    Hanson, Elizabeth
    University of Kalmar, eHealth Institute, School of Human Sciences, University of Kalmar,.
    Hauge, Solveig
    Vestfold University College, Tønsberg, Norway.
    Ulstein, Ingun
    Norwegian Centre for Dementia Research, Ullevaal University Hospital, Oslo, Norway.
    Magnusson, Lennart
    University of Kalmar, eHealth Institute, School of Human Sciences, University of Kalmar,.
    A pilot study of how information and communication technology may contribute to health promotion among elderly spousal carers in Norway2008In: Health & Social Care in the Community, ISSN 0966-0410, E-ISSN 1365-2524, Vol. 16, no 1, p. 75-85Article in journal (Refereed)
    Abstract [en]

    The objective of this pilot Norwegian intervention study was to explore whether use of information and communication technology (ICT) by informal carers of frail elderly people living at home would enable them to gain more knowledge about chronic illness, caring and coping, establish an informal support network and reduce stress and related mental health problems. Potential participants were close relatives of an elderly person with a diagnosis of a chronic illness dwelling in the same household who wished to continue caring for their relative at home, were 60 years of age or older, had been caring for less than 2 years, were a computer novice and had Norwegian as their first language. Nineteen elderly spousal carers participated in the study from two municipalities in eastern Norway. The project commenced in January 2004 and consisted of a multimethod evaluation model. Outcomes measured included carers' social contacts (measured by the Family and Friendship Contacts scale); burden of care (measured by the Relative Stress scale); and knowledge about chronic disease and caring, stress and mental health and use of ICT (examined via a composite carer questionnaire). These quantitative data were collected immediately prior to the study and at 12 months. Qualitative data were also collected via focus group interviews with participant carers at 7 months. At follow-up, quantitative measures did not reveal any reduction in carer stress or mental health problems. However, carers reported extensive use of the ICT service, more social contacts and increased support and less need for information about chronic illness and caring. Contact with and support from other carers with similar experiences was particularly valued by participants. The intervention also enhanced contacts with family and friends outside the carer network. Thus, it can be seen that ICT has the potential to contribute to health promotion among elderly spousal carers.

  • 120.
    Van der Veen, Roelf
    et al.
    Vilans, Centre of Expertise for the Long Term Care, Netherlands.
    Versteeg, Marleen
    Vilans, Centre of Expertise for the Long Term Care, Netherlands.
    Mak, Sabina
    Vilans, Centre of Expertise for the Long Term Care, Netherlands.
    Bodnarova, Bernardina
    Institute for Labour and Family Research, Slovakia.
    Selestiakova, Katarina
    Institute for Labour and Family Research, Slovakia.
    Hanson, Elizabeth
    Linnaeus University, Faculty of Health, Social Work and Behavioural Sciences, School of Health and Caring Sciences.
    Andersson, Gunnel
    Örebro University Hospital, Department of Urology, Sweden.
    Santini, Sara
    INRCA, Italian National Research Centre on Aging, Italy.
    Quattrini, Sabrina
    INRCA, Italian National Research Centre on Aging, Italy.
    Lamura, Giovanni
    INRCA, Italian National Research Centre on Aging, Italy.
    Quality of life of carers managing incontinence in Europe,: Final project report2011Report (Other academic)
  • 121.
    Wilder, Jenny
    et al.
    Mälardalen University, Sweden.
    Magnusson, Lennart
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Hanson, Elizabeth
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. University of Sheffield, UK.
    Professionals’ and parents’ shared learning in blended learning networks related to communication and augmentative and alternative communication for people with severe disabilities2015In: European Journal of Special Needs Education, ISSN 0885-6257, E-ISSN 1469-591X, Vol. 30, no 3, p. 367-383Article in journal (Refereed)
    Abstract [en]

    People with severe disabilities (SD) communicate in complex ways, and their teachers, parents and other involved professionals find it difficult to gain knowledge and share their experiences regarding the person with SD’s communication methods. The purpose of this study is to contribute to our understanding of how parents and professionals share learning about communication and augmentative and alternative communication (AAC) for people with SD by participating in blended learning networks (BLNs). Thirty-six parents and professionals participated in online web-based BLNs according to a prepared format; four groups were formed, and all of the groups participated in four discussion sessions and an evaluation session. Detailed minutes from the 16 BLN sessions, an evaluation session and course evaluation data were thematically analysed. The theoretical frameworks were different perspectives on disability within communication research and special education research, and theories about shared learning in networks. The analyses revealed themes that focused on communication partners’ knowledge, attitudes and strategies regarding communicating with people with SD; the importance and power of using multimodal AAC; and the universality, user-friendliness and empowering aspects of iPads and apps. The findings suggest that participants perceive communication and AAC with people with SD from relational, dialogical and interactional perspectives, whereas the categorical perspective was less pronounced. In accordance with other professional competence research, the use of online web-based BLNs with mixed groups that was described in this paper yielded positive evaluations from the participants. The opportunity for meeting others involved in caring for people with SD, the actual blended groups and the sharing of technology and AAC experiences in particular were highlighted.

  • 122.
    Winqvist, Marianne
    et al.
    FoU-enheten, Region Uppsala.
    Magnusson, Lennart
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. Swedish Family Care Competence Centre (NKA).
    Beijer, Ulla
    FoU Sörmland.
    Göransson, Suzanne
    FoU Jämt.
    Takter, Martina
    FoU Malmö.
    Tomazic, Dennis
    Skara kommun.
    Hanson, Elizabeth
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. Swedish Family Care Competence Centre (NKA).
    Stöd till anhöriga. Erfarenheter från åtta kommuner 2010–2013. Slutrapport2016Report (Other academic)
    Abstract [sv]

    För att dra lärdom av det utvecklingsarbete som genomförs gällande stöd till anhöriga har Nationellt kompetenscentrum anhöriga (Nka) i samverkan med åtta FoU-enheter kartlagt och följt utvecklingen av stödet till anhöriga i åtta kommuner: Borås, Härjedalen, Hässleholm, Malmö, Skara, Strängnäs, Uppsala och Västervik. Tidigare har resultatet av kartläggning 1, gällande år 2010 presenterats. I denna rapport som utgör projektets slutrapportering, analyseras utvecklingen av anhörigstödet under de därpå följande åren. Denna sammanfattning fokuserar på de förändringar som skett under de senaste åren.

  • 123. Winqvist, Marianne
    et al.
    Magnusson, Lennart
    Linnaeus University, Faculty of Health, Social Work and Behavioural Sciences, School of Health and Caring Sciences.
    Bergström, Ingela
    Beyhammar, Kerstin
    Eriksson, Bengt
    Follin, Annika
    Forsgren, Annica
    Forsman Björkman, Carina
    Göransson, Margareta
    Göransson, Suzanne
    Höglund, Eva
    Larsson, Ann-Christine
    Lerman, Bo
    Mannefred, Carina
    Takter, Martina
    Talman, Lena
    Tomazic, Dennis
    Wesser, Erik
    Hanson, Elizabeth
    Linnaeus University, Faculty of Health, Social Work and Behavioural Sciences, School of Health and Caring Sciences.
    Stöd till anhöriga: erfarenheter från åtta kommuner 2010-20122012Report (Other academic)
    Abstract [sv]

    Ett omfattande arbete har utförts i landets kommuner sedan slutet av 1990-talet för att utveckla stödet till anhöriga. Staten har bidragit med cirka enmiljard kronor i stimulansmedel och en förändring har införts i Socialtjänstlagen som innebär att kommunerna har en skyldighet att erbjuda anhöriga stöd.I denna undersökning kartläggs och följs stödet till anhöriga under tre år i åtta kommuner. De studerade kommunerna är Borås, Härjedalen, Hässleholm, Malmö, Skara, Strängnäs, Uppsala och Västervik. I rapporten presenteras resultatet av kartläggningen för år 2010. Syftet med studien är att:Kartlägga innehållet i stödet till anhöriga, hur stödet organiseras, planeras,följs upp och utvärderas inom äldre-, funktionshinder- och individ-och familjeområdet samt samverkan mellan kommun, landsting,ideella organisationer och andra aktörer inom området.Undersöka hur de olika huvudintressenterna bedömer kvaliteten påstödet till anhöriga.Under tre år följa utvecklingen i de kommuner/kommundelar som ingår i studien.

  • 124.
    Yghemonos, Stecy
    et al.
    Eurocarers, Belgium.
    Hanson, Elizabeth
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. Swedish Family Care Competence Centre (NKA), Sweden.
    Eurocarers: carer organisations and research organisations working together to ensure evidence-based policy making at EU level2015In: Presented at the 6th International Carers Conference - Care and caring: future proofing the new demographics, Gothenburg, Sweden, September 3-6, 2015, 2015Conference paper (Refereed)
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