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  • 1.
    Andersson, Stefan
    et al.
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Erlingsson, Christen
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    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.
    Information and communication technology-mediated support for working carers of older family members: an integrative literature review2017In: International Journal of Care and Caring, ISSN 2397-8821, Vol. 1, no 2, p. 247-273Article, review/survey (Refereed)
    Abstract [en]

    How best to support working carers is being paid increased attention across Europe and internationally. This article examines a largely unexplored area within the empirical literature, namely, information and communication technology-mediated support for working carers of older people. Using an integrative review methodology to draw on both quantitative and qualitative data, 14 studies were identified. Themes included making work–life balance easier, reducing the burden of caregiving and promoting well-being. Factors to consider in the design, implementation and evaluation of innovative support solutions for working carers are put forward. However, a lack of longitudinal studies and biased samples warrants further investigation.

  • 2.
    Andersson, Stefan
    et al.
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Erlingsson, Christen
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    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.
    The experiences of working carers of older people regarding access to a web-based family care support network offered by a municipality2017In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 31, no 3, p. 487-496Article in journal (Refereed)
    Abstract [en]

    Policy makers in Sweden and other European Member States pay increasing attention as to how best support working carers; carers juggling providing unpaid family care for older family members while performing paid work. Exploring perceived benefits and challenges with web-based information and communication technologies as a means of supporting working carers' in their caregiving role, this paper draws on findings from a qualitative study. The study aimed to describe working carers' experiences of having access to the web-based family care support network 'A good place' (AGP) provided by the municipality to support those caring for an older family member. Content analysis of interviews with nine working carers revealed three themes: A support hub, connections to peers, personnel and knowledge; Experiencing ICT support as relevant in changing life circumstances; and Upholding one's personal firewall. Findings indicate that the web-based family care support network AGP is an accessible, complementary means of support. Utilising support while balancing caregiving, work obligations and responsibilities was made easier with access to AGP; enabling working carers to access information, psychosocial support and learning opportunities. In particular, it provided channels for carers to share experiences with others, to be informed, and to gain insights into medical and care issues. This reinforced working carers' sense of competence, helping them meet caregiving demands and see positive aspects in their situation. Carers' low levels of digital skills and anxieties about using computer-based support were barriers to utilising web-based support and could lead to deprioritising of this support. However, to help carers overcome these barriers and to better match web-based support to working carers' preferences and situations, web-based support must be introduced in a timely manner and must more accurately meet each working carer's unique caregiving needs.

  • 3. Andersson, Stefan
    et al.
    Magnusson, Lennart
    Linnaeus University, Faculty of Health, Social Work and Behavioural Sciences, School of Health and Caring Sciences.
    Hanson, Elizabeth
    Linnaeus University, Faculty of Health, Social Work and Behavioural Sciences, School of Health and Caring Sciences.
    Teknikstöd för yrkesverksamma anhöriga: resultat från utvärdering av tre projekt inom programmet Teknik för äldre II2012Report (Other academic)
    Abstract [sv]

    Nationellt kompetenscentrum anhöriga fick i uppdrag av Hjälpmedelsinstitutet att under 2012 utvärdera tre projekt inom programmet, "Teknik för äldre II" som fokuserar på tekniskt stöd till anhöriga "Mitt i livet" som kombinerar förvärvsarbete med anhörigomsorg. Det första projektet, "Teknikstöd – ökad social interaktion mellan anhöriga mitt i livet", i Alingsås kommun implementerade det internetbaserade IT systemet "Gapet" för yrkesverksamma anhöriga. Det andra projektet, "Modell för virtuellt anhörigstöd" i Gävle kommun, utvecklade en modell och struktur för ett enhetligt virtuellt anhörigstöd som riktade sig till yrkesverksamma anhöriga vilket inkluderade den IT-baserade stödtjänsten "Anhörigstödsportalen". Det tredje projektet, "Teknikstöd för yrkesverksamma anhöriga – en behovsstudie, fokuserade på att utföra en inventering av yrkesverksamma anhörigas behov av ny teknik, utveckla en modell för teknikstöd riktat till yrkesverksamma anhöriga samt hitta vägar för att sprida kunskap för att öka målgruppens möjlighet att nås av teknikstöd. Detta område är särskilt viktigt därför att det i nuläget finns få stödtjänster, i Sverige men även internationellt, som är speciellt anpassade till yrkesverksamma anhöriga som hjälper, stödjer och/eller vårdar en äldre närstående. Många yrkesverksamma anhöriga uttrycker att de vill hjälpa sin förälder/sina föräldrar, men att det är svårt att uppnå en balansgång mellan arbetsliv och familjeliv samtidigt som man hjälper, stödjer och/eller vårdar en äldre närstående. Det är inte ovanligt att egen tid för avkoppling och välbefinnande blir alltmer sällan och prioriteras bort. Som en följd av detta upplever de yrkesverksamma anhöriga ofta stress för att de inte räcker till och ständigt behöver bolla mellan olika sfärer av sina liv. Den senaste statistiken från Socialstyrelsen visar att närmare 100 000 anhöriga har behövt minska sin arbetstid eller sluta arbeta pååtta procent män. Yrkesverksamma anhörigas behov kan sammanfattas med information, rådgivning och/eller utbildning/ träning, praktiskt samt känslomässigt stöd som är flexibelt och passar de egna rutinerna och den egna situationen. Mot denna bakgrund, utvecklades och diskuterades en utvärderingsplan med projektledarna tillsammans med den övergripande koordinatorn för initiativet "Teknik för Äldre II" vid det första gemensamma projektmötet och utvärderingen var en återkommande nyckelfråga vid efterföljande gemensamma projektmöten som hölls under året. Utvärderingen av projekt 1 och 2 genomfördes under hösten 2012 med en liknande utformning för båda projekten där en kvalitativ utvärdering genomfördes med hjälp av fokusgruppsintervjuer och individuella intervjuer och en kvantitativ utvärdering utfördes med hjälp av ett standardiserat frågeformulär om användbarhet. Utvärderingen av projekt 3 genomfördes kontinuerligt från starten till slutet av projektet. Detta berodde på att projektet var en behovsstudie som omfattade anhörigvårdare i en kontinuerlig utvecklingsprocess vilket betyder att det var olämpligt att genomföra en utvärdering under en specifik period vilket var fallet i de två första projekten. Resultaten från utvärderingarna av de första två projekten visar att teknikstöd har en stor potential avseende yrkesverksamma anhöriga då det erbjuder ett flexibelt sätt för anhöriga att få tillgång till information och en möjlighet för anhöriga att kunna utbyta erfarenheter med andra i samma situation och själva skapa stödnätverk. På samma gång erbjuder teknikstöd personalen att arbeta på ett systematiskt sätt med stöd till anhöriga. Men, för att teknikstöd ska användas av fler anhörigvårdare och för att det ska bli mer allmänt accepterat av personalen behövs det grundläggande datorutbildning för både anhöriga och vård- och omsorgspersonal samt kontinuerlig tillgång till handledning och stöd i användningen. Resultat som härrör från en utvärdering från behovsstudien (projekt 3) visar att utbudet av kreativa och sekventiella metoder som användes under utvecklingsprocessen möjliggjorde en genuin brukarmedverkan av yrkesverksamma anhöriga så att deras röster blev hörda gällande teknikstöd. Samtidigt kan dessa innovativa metoder bilda en användbar modell för vård- och omsorgs personal gällande hur anhöriga kan nås av stöd genom produkter, tjänster och ny teknik

  • 4.
    Andersson, Stefan
    et al.
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    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.
    The use of information and communication technologies to support working carers of older people: a qualitative secondary analysis2016In: International Journal of Older People Nursing, ISSN 1748-3735, E-ISSN 1748-3743, Vol. 11, no 1, p. 32-43Article in journal (Refereed)
    Abstract [en]

    BACKGROUND:

    Family care support services have mainly focused on older spousal carers of older people and have largely overlooked working carers, whom combine paid work with informal/family care responsibilities. Recently, however, information and communication technology (ICT) systems have been identified as a potentially flexible way of supporting working carers.

    AIM:

    The aim of this study was to describe nursing and support staff's experiences of using ICT for information, e-learning and support of working carers of older people.

    DESIGN:

    The study employed a descriptive, qualitative approach conducting a qualitative secondary analysis of two original data sets. In total, seventeen professional staff members from two municipal family carer support units in Sweden that had implemented ICTs were interviewed using a semi-structured interview guide consisting of open-ended questions.

    METHOD:

    Two data sets were merged using latent qualitative content analysis.

    FINDINGS:

    Secondary analysis produced three subthemes and an overall theme, a virtual road as a carriageway for the support of working carers, consisting of both enabling and hindering aspects in family support. This theme provides access points in both directions and is based on caring instruments that enable nursing staff's support role. The staff's sustainability and ability to support is influenced by caring opportunities and barriers.

    CONCLUSIONS:

    The findings suggest the ICTs to be flexible structures that provided nursing staff with a means and method to support working carers of older people. To overcome barriers to its use, measures to optimise support for working carers and the older person are needed.

    IMPLICATIONS FOR PRACTICE:

    The use of ICTs provides nurses with a means to offer support to working carers of older people and enables carers to be informed, to learn and to share their burdens with others when caring for an older family member.

  • 5.
    Andreasson, Jesper
    et al.
    Linnaeus University, Faculty of Social Sciences, Department of Sport Science.
    Johansson, Thomas
    University of Gothenburg.
    Magnusson, Lennart
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Våldsbejakande extremism och radikalisering: En översikt: [Violent extremism and radicalization: an overview]2018In: Young, Marginalised but not Radicalised: A comparative study of positive approaches to youth radicalisation / [ed] Theo Gavrielides, London: IARS Publications , 2018, p. 152-175Chapter in book (Other academic)
    Abstract [en]

    In Sweden, the understanding of processes of radicalization and the development of preventive work against violent extremism can be said to be framed by a few specific political decisions that were formative for the policies developed. These are dealt with in the text. Among other things, the result shows that the security discourse and preventive work are often mixed up at the policy level, which has repercussions in research and prevention. One important key to developing the work on security and prevention lies in the need for further knowledge development regarding everything from methods and field studies to policy practices. Apart from providing an account of developments in Sweden, there are also arguments for a more skeptical, reflexive, and critical attitude towards all forms of simplified categorizations of young people, which risks stigmatizing individuals and groups. By starting from a critical and reflexive social education perspective, it will become possible to contribute to understanding and to an analysis of social contexts, risks, and negative spirals. The ambition of trying to predict which individuals will potentially commit crimes of terror represents a dead end. On the other hand, there are possibilities of identifying risk environments, subcultural groups that cultivate extreme opinions, and then to approach these groups in various ways in order to develop effective social pedagogical work and positive and GLM-based trajectories for young people at risk for radicalisation.

  • 6. Andréasson, Frida
    et al.
    Aidermark, Jan
    Magnusson, Lennart
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Strömberg, Anna
    Hanson, Elizabeth
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Lifeworld in co-designing with informal carers2019In: Journal of Enabling Technologies, Vol. 13, no 1, p. 29-39Article in journal (Refereed)
    Abstract [en]

    Purpose

    The purpose of this paper is to reflect on carers’ experiences of being involved in the development of a web-based support programme for carers of people with heart failure (CPwHF), and discuss the challenges related to their involvement in the development process. The focus was on the different phases in the project as well as the methodological challenges and opportunities that occurred in the user group sessions conducted.

    Design/methodology/approach

    This research adopt an explorative design studying a co-design process to develop an information and communication technology based support programme for and with CPwHF. Habermas’ concepts of lifeworld and system are used as a theoretical framework to analyse the co-design process employed in the study.

    Findings

    Reflecting on the co-design approach adopted, the findings highlight the methodological challenges that arise with carer involvement and the possible tensions that occur between researchers’ ambitions to include users in the design process, and the goal of developing a product or service, in the different phases of the design process.

    Originality/value

    Findings highlight that there is a tension between the system and lifeworld in the co-design process which are not totally compatible. The paper highlights that there is a need to develop flexible and reflexive human-centred design methodologies, able to meet carers’ needs and ideas, and at the same time balance this with proposed research outcomes.

  • 7. Andréasson, Frida
    et al.
    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.
    Understanding carer health and wellbeing2017In: Eurocarers symposium presentation, Towards a strong evidence base for carer-friendly systems in the European Union, chair, Symposium, 2017Conference paper (Refereed)
  • 8.
    Barbabella, Francesco
    et al.
    European Centre for Social Welfare Policy and Research, Austria ; Italian National Institute of Health and Science on Aging (INRCA), Italy .
    Hoffmann, Frédérique
    European Centre for Social Welfare Policy and Research, Austria.
    Rodrigues, Ricardo
    European Centre for Social Welfare Policy and Research, Austria.
    Schmidt, Andrea
    European Centre for Social Welfare Policy and Research, Austria.
    Chiatti, Carlos
    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
    Polytechnic University of Marche, Italy ; 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 Science, Hungary.
    Widéhn, Nadja
    Swedish National Family Care Competence Centre (SNFCCC), Sweden.
    Lamura, Giovanni
    Italian National Institute of Health and Science on Aging (INRCA), Italy ; European Centre for Social Welfare Policy and Research, Austria.
    Deliverable 3.6: Final report on the “Methodological Framework”2011Report (Other academic)
    Abstract [en]

    This report proposes a framework for Impact Assessment of ICT-enabled services to support informal carers, at family, organisational and national levels, and applies this framework to assess the evidence for impact in 12 cases from Europe and North America.

  • 9. Berghamre Heinz, Agneta
    et al.
    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.
    Furenbäck, Ingela
    Barn som anhöriga: Alla barn ska få möjlighet till hälsa och personlig utveckling2019Report (Other academic)
    Abstract [sv]

    Alla barn och unga har rätt att växa upp under trygga och goda förhållanden och få det skydd och stöd som kan behövas för en gynnsam fysisk och social utveckling. Vad gäller barn som anhöriga utsätts de för mångfaldigt större risker att drabbas av såväl sjukdom som sociala problem jämfört med andra barn. Samhället kan gemensamt verka förebyggande genom att minska risk- och stärka skyddsfaktorer för barnen och deras familjer och utveckla och systematiskt följa upp riktade stödinsatser för barnen. Genom utveckling av organisatoriska strukturer och rutiner, enskilda initiativ och engagemang kan bättre förutsättningar för alla barn stärkas. Nka arbetar för att bidra till sådant stöd att närståendes svårigheter inte inkräktar på barnets hälsa, utveckling och skolgång. I denna folder finner Ni flera intressanta exempel på rutiner och insatser till barn som anhöriga. Låt er inspireras och vara delaktiga i detta viktiga uppdrag, att alla barn ska få möjlighet till hälsa, personlig utveckling, utbildning och social delaktighet.

  • 10. Chiatti, Carlos
    et al.
    Fry, Gary
    Hanson, Elizabeth
    Linnaeus University, Faculty of Health, Social Work and Behavioural Sciences, School of Health and Caring Sciences.
    Magnusson, Lennart
    Linnaeus University, Faculty of Health, Social Work and Behavioural Sciences, School of Health and Caring Sciences.
    Socci, Marco
    Stückler, Andreas
    Széman, Zsuzsa
    Widéhn, Nadja
    Barbabella, Francesco
    Lamura, Giovanni
    Deliverable 4.3: Final report containing case-by case detailed description and analysis of 12 good practices2011Report (Other academic)
  • 11. Christensen, Carina
    et al.
    Sennemark, Eva
    Moberg, Anette
    Magnusson, Lennart
    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,.
    Införande av systematisk planering och uppföljning av anhörigstöd med hjälp av COAT: Delrapport till Länsstyrelsen i Skåne län för perioden 060118 - 0701182007Report (Other academic)
  • 12. De Bie Widéhn, Nadja
    et al.
    Nichlasson, Malin
    Magnusson, Lennart
    Linnaeus University, Faculty of Health, Social Work and Behavioural Sciences, School of Health and Caring Sciences.
    Svensson, Paul
    Hanson, Elizabeth
    Linnaeus University, Faculty of Health, Social Work and Behavioural Sciences, School of Health and Caring Sciences.
    BLANDADE LÄRANDE NÄTVERK - arbete i partnerskap för att förbättra vård- och omsorgstjänster till äldre och deras anhörigvårdare via informations- och kommunikationsteknologi2009Report (Other (popular science, discussion, etc.))
  • 13.
    Ducharme, Francine
    et al.
    Université de Montréal.
    Lévesque, Louise
    Caron, Chantal
    Hanson, Elizabeth
    Linnaeus University, Faculty of Health, Social Work and Behavioural Sciences, School of Health and Caring Sciences.
    Magnusson, Lennart
    Linnaeus University, Faculty of Health, Social Work and Behavioural Sciences, School of Health and Caring Sciences.
    Nolan, Janet
    Nolan, Mike
    [A useful test for evaluating the needs for support of family members--help for an aged parent at home: a tool with potential application in French-speaking Europe]2010In: Recherche en soins infirmiers, ISSN 0297-2964, Vol. 101, p. 67-68Article in journal (Refereed)
    Abstract [en]

    The Family Caregivers Support Agreement (FCSA) tool, based on a caregiver-service provider partnership approach to assess the support needs of family caregivers of a home-living aging relative, was field-tested to document its relevance for use in Quebec (Canada) practice settings. The FCSA tool is a modified version of the Carers Outcome Assessment Tool, initially developed as the result of an Anglo-Swedish Study. The field test was conducted with 17 French- and English-speaking caregivers and revealed numerous unmet caregiver needs, especially of a psycho-educational nature. The use of the FCSA tool lead to an identification of homecare support services which corresponded to caregiver needs and expectations. According to the homecare services providers interviewed, the FCSA tool offers a structured and flexible approach that facilitates the identification of services sensitive to caregiver needs. The instrument allows concretizing the partnership process, in particular, by bringing to light the unique needs of individual caregivers, empowering caregivers by considering them active participants in decision making, and fostering a proper fit between services and needs. Results are in line with those of other studies, suggesting that the caregiver role entails common core needs and that the impact of the FCSA tool is comparable regardless of practice setting. All told, the FCSA tool could potentially be applied in the French-speaking Europe.

  • 14.
    Ducharme, Francine
    et al.
    Centre de recherche de l’Institut universitaire de gériatrie de Montréal.
    Lévesque, Louise
    Faculté des sciences infirmières, Université de Montréal.
    Caron, Chantal
    Research Centre on Aging, Universite´ de Sherbrooke.
    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,.
    Nolan, Mike
    University of Sheffield, UK.
    Nolan, Janet
    Sheffield Hallam University, UK.
    Validation d'un outil pour les proches-aidants: Validation of a tool for family caregivers2009In: Recherche en soins infirmiers, ISSN 0297-2964, Vol. 97, p. 63-73Article in journal (Refereed)
    Abstract [en]

    The purpose of this transcultural study was to translate and adapt for the province of Quebec (Canada) a tool for assessing the support needs of family caregivers of aging persons, as well as to validate the relevance and feasibility of its utilization in Quebec homecare services. Developed jointly in the United Kingdom and Sweden and based on a caregiver-service provider partnership process, the Carers Outcome Agreement Tool (COAT) is presently the focus of a large-scale implementation study in Sweden. Following parallel back-translation and adaptation, the tool, entitled Entente sur le Soutien aux Proches-Aidants (ESPA) in French, was validated in terms of relevance and feasibility via focus groups with service providers and interviews with family caregivers. Results show the ESPA to be a culturally sensitive tool that systematically identifies the support needs of caregivers and indicates the type of help best suited to meet these needs. As with other European studies, the results suggest that the caregiver role comprises a common core of needs and highlights the tool's potential for transfer to the cultural context of French-speaking Europe.

  • 15.
    Ericson, Lisa
    et al.
    Linnaeus University, Faculty of Health and Life Sciences, Department of Medicine and Optometry.
    Hovstadius, Bo
    Linnaeus University, Faculty of Health and Life Sciences, Department of Medicine and Optometry.
    Magnusson, Lennart
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. Swedish Family Care Competence Centre (NKA).
    Hälsoekonomisk studie av barn och vuxna med fetalt alkoholsyndrom2015Report (Other academic)
    Abstract [sv]

    Att barn och unga lever i hem med missbruk och/eller allvarlig sjukdom medför direkta och indirekta kostnader för samhället på kort och lång sikt. Denna hälsoekonomiska studie är en beräkning av samhällets årliga kostnad för den andel av befolkningen som vuxit upp som barn som anhörig till förälder med psykisk sjukdom eller missbruk av alkohol eller narkotika.

  • 16.
    Ericson, Lisa
    et al.
    Linnaeus University, Faculty of Health and Life Sciences, Department of Medicine and Optometry.
    Magnusson, Lennart
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. The Swedish Family Care Competence Centre.
    Hovstadius, Bo
    Linnaeus University, Faculty of Health and Life Sciences, Department of Medicine and Optometry.
    Societal costs of fetal alcohol syndrome in Sweden2017In: European Journal of Health Economics, ISSN 1618-7598, E-ISSN 1618-7601, Vol. 18, no 5, p. 575-585Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: To estimate the annual societal cost of fetal alcohol syndrome (FAS) in Sweden, focusing on the secondary disabilities thought feasible to limit via early interventions.

    METHODS: Prevalence-based cost-of-illness analysis of FAS in Sweden for 2014. Direct costs (societal support, special education, psychiatric disorders and alcohol/drug abuse) and indirect costs (reduced working capacity and informal caring), were included. The calculations were based on published Swedish studies, including a register-based follow-up study of adults with FAS, reports and databases, and experts.

    RESULTS: The annual total societal cost of FAS was estimated at €76,000 per child (0-17 years) and €110,000 per adult (18-74 years), corresponding to €1.6 billion per year in the Swedish population using a prevalence of FAS of 0.2 %. The annual additional cost of FAS (difference between the FAS group and a comparison group) was estimated at €1.4 billion using a prevalence of 0.2 %. The major cost driver was the cost of societal support.

    CONCLUSIONS: The cost burden of FAS on the society is extensive, but likely to be underestimated. A reduction in the societal costs of FAS, both preventive and targeted interventions to children with FAS, should be prioritized. That is, the cost of early interventions such as placement in family homes or other forms of housing, and special education, represent unavoidable costs. However, these types of interventions are highly relevant to improve the individual's quality of life and future prospects, and also, within a long-term perspective, to limit the societal costs and personal suffering.

  • 17.
    Erlingsson, Christen
    et al.
    Linnaeus University, Faculty of Health, Social Work and Behavioural Sciences, School of Health and Caring Sciences.
    Magnusson, Lennart
    Linnaeus University, Faculty of Health, Social Work and Behavioural Sciences, School of Health and Caring Sciences.
    Hanson, Elizabeth
    Linnaeus University, Faculty of Health, Social Work and Behavioural Sciences, School of Health and Caring Sciences.
    Anhörigvårdares hälsa2010Report (Other academic)
  • 18.
    Erlingsson, Christen
    et al.
    Linnaeus University, Faculty of Health, Social Work and Behavioural Sciences, School of Health and Caring Sciences.
    Magnusson, Lennart
    Linnaeus University, Faculty of Health, Social Work and Behavioural Sciences, School of Health and Caring Sciences.
    Hanson, Elizabeth
    Linnaeus University, Faculty of Health, Social Work and Behavioural Sciences, School of Health and Caring Sciences.
    Family Caregivers’ Health in connection with providing care2012In: Qualitative Health Research, ISSN 1049-7323, E-ISSN 1552-7557, Vol. 22, no 5, p. 640-655Article in journal (Refereed)
    Abstract [en]

    Our aim was to investigate connections between Swedish family caregivers’ health and providing care for an ill relative by conducting a systematic search and synthesis of previous research. We analyzed 31 articles using first qualitative content analysis then hermeneutic analysis. Analysis resulted in three derived themes—sliding sideways into caregiving, caregiving in reciprocity, and caregiving in disintegration—and a main interpretation and conceptual model of Swedish family caregivers’ health—caregiving in a sphere of beliefs. Results indicated that Swedish family caregivers’ beliefs, experiences of reciprocity, or nonsupport, together with quality of interpersonal relationships and feelings of responsibility and guilt, have a profound impact on their health. These results point to the value and importance of nurses gaining an understanding of family caregivers’ beliefs and experiences of reciprocity or nonsupport to effectively promote family caregivers’ health.

  • 19.
    Erlingsson, Christen
    et al.
    University of Kalmar, School of Human Sciences.
    Magnusson, Lennart
    University of Kalmar, School of Human Sciences.
    Hanson, Elizabeth
    University of Kalmar, School of Human Sciences.
    Health of informal family caregivers in Sweden2009Conference paper (Refereed)
  • 20.
    Fagerberg, Åke
    et al.
    Varbergs kommun.
    Moberg, Anette
    Magnusson, Lennart
    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,.
    Införande av en modell och instrument för att kartlägga behov och planera ett individuellt anpassat stöd för anhörigvårdare i Varbergs kommun: Delrapport till Länsstyrelsen i Hallands län för perioden 060118 - 0612312007Report (Other academic)
  • 21.
    Hanson, Elizabeth
    et al.
    Linnaeus University, Faculty of Health, Social Work and Behavioural Sciences, School of Health and Caring Sciences.
    Magnusson, Lennart
    Linnaeus University, Faculty of Health, Social Work and Behavioural Sciences, School of Health and Caring Sciences.
    ACTION – arbete i partnerskap för ökad vård och  omsorgskvalitet: Progressrapport för VINNVÅRD2010Report (Other (popular science, discussion, etc.))
  • 22.
    Hanson, Elizabeth
    et al.
    Linnaeus University, Faculty of Health, Social Work and Behavioural Sciences, School of Health and Caring Sciences.
    Magnusson, Lennart
    Linnaeus University, Faculty of Health, Social Work and Behavioural Sciences, School of Health and Caring Sciences.
    Anhörig och brukarrevision inom demensvård: en modell för utveckling i samverkan2012Report (Other academic)
  • 23.
    Hanson, Elizabeth
    et al.
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. Swedish Family Care Competence Centre.
    Magnusson, Lennart
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. Swedish Family Care Competence Centre.
    Children as Next of Kin: results of research and development work and policy impact on Young Carers - focus on ‘children as next of kin’2016Conference paper (Other academic)
  • 24.
    Hanson, Elizabeth
    et al.
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. Swedish Family Care Competence Centre.
    Magnusson, Lennart
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. Swedish Family Care Competence Centre.
    Piloting Information and Communication Technology based services to reach out and support working carers2016Conference paper (Other academic)
  • 25.
    Hanson, Elizabeth
    et al.
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Magnusson, Lennart
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Quality of care from a carer perspective2019In: Eurocarers Symposium presentation, 2019Conference paper (Refereed)
  • 26.
    Hanson, Elizabeth
    et al.
    Linnaeus University, Faculty of Health, Social Work and Behavioural Sciences, School of Health and Caring Sciences.
    Magnusson, Lennart
    Linnaeus University, Faculty of Health, Social Work and Behavioural Sciences, School of Health and Caring Sciences.
    The role of ICT support services to promote ageing in place: The ACTION service2011In: Eurohealth, ISSN 1356-1030, Vol. 17, no 2-3, p. 24-26Article in journal (Other academic)
    Abstract [en]

     ACTION (Assisting Carers using Telematics Interventions to meet Older

    people’s Needs) is an innovative example of an Information and Communication

    Technology (ICT) based support service that is currently running in Sweden to help

    empower older people with chronic conditions and their family carers in their daily

    lives. The service is outlined and the main evaluation findings are presented. Sirpa

    explains how ACTION has been of direct benefit in her caring situation. The main

    lessons learned over a fourteen year period of implementing ACTION in Sweden are

    highlighted, concluding with the main challenges facing researchers, policy makers

    and decision makers in the immediate future.

  • 27.
    Hanson, Elizabeth
    et al.
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Magnusson, Lennart
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Young carer involvement in the EU H2020 ME-WE project2019In: Symposium presentation, It takes a village’, 2019Conference paper (Refereed)
  • 28.
    Hanson, Elizabeth
    et al.
    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,.
    Amilon, Kajsa
    Nationellt Kompetenscentrum Anhöriga, Kalmar.
    E-tjänster öppnar nya världar2009In: Äldreomsorg, ISSN 1403-7025, no 3Article in journal (Other (popular science, discussion, etc.))
  • 29.
    Hanson, Elizabeth
    et al.
    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,.
    Arvidsson, Helene
    Institutionen för Vårdvetenskap, Högskolan i Borås.
    Claesson, Anette
    Institutionen för Vårdvetenskap, Högskolan i Borås.
    Keady, John
    University of Manchester and the Bolton, Salford and Trafford Mental Health NHS Trust, UK.
    Nolan, Mike
    University of Sheffield, UK.
    Working together with persons with early stage dementia and their family members to design a user-friendly technologybased support service2007In: Dementia, ISSN 1471-3012, E-ISSN 1741-2684, Vol. 6, no 3, p. 411-434Article in journal (Refereed)
    Abstract [en]

    This article describes how researchers, practitioners and

    technicians in West Sweden worked together with older people with

    early stage dementia and their family members to develop a

    user-friendly technology-based information, education and support

    service, based on the generic ACTION participatory design model.

    Ways of working in partnership with older people with early stage

    dementia and their family members are explored, and key lessons

    learned are highlighted. The overriding message is that elders with

    early stage dementia can be actively involved throughout the entire

    research and development process. Essential prerequisites are time and

    ongoing support by skilled practitioners and family members.

    Preliminary findings reveal that older people with early stage

    dementia can learn and benefit from user-friendly technology,

    especially when used together with others in a similar situation.

  • 30.
    Hanson, Elizabeth
    et al.
    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,.
    Eriksson, Ingegerd
    Borås stad.
    Borg, Anette
    Järfälla kommun.
    Kjelleryd, Hans
    Petersson, Göran
    University of Kalmar.
    Gustavsson, Tomas
    Chalmers tekniska högskola.
    Svensson, Paul
    Borås stad.
    Arvevik, Fredrik
    Borås stad.
    Fagerberg, Åke
    Varbergs kommun.
    Bolwig, Boel
    Västerås kommun.
    Sahlstedt, Sylvia
    Huddinge kommun.
    Hägglund, Pär
    Härnösands kommun.
    Jansson, Barbro
    Härnösands kommun.
    Lindström, Berner
    Göteborgs universitet.
    ACTION - working in partnership to improve healthcare and social welfare services for older people and their family carers via ICT.: [ACTION – arbete i partnerskap för ökad vård och omsorgskvalitet.]2007Report (Other academic)
  • 31.
    Hanson, Elizabeth
    et al.
    Linnaeus University, Faculty of Health, Social Work and Behavioural Sciences, School of Health and Caring Sciences.
    Magnusson, Lennart
    Linnaeus University, Faculty of Health, Social Work and Behavioural Sciences, School of Health and Caring Sciences.
    Hedin, Ulf
    Gunnhilstam, O
    Slutrapport för projektet ACTION - "Att leva med demens" - en modell/system för utbildning och stöd med hjälp av IKT. Dnr: 2005/02382010Report (Other (popular science, discussion, etc.))
  • 32.
    Hanson, Elizabeth
    et al.
    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,.
    Nolan, Janet
    Faculty of Health and Wellbeing, University of Sheffield.
    Swedish experiences of a negotiated approach to carer assessment: the Carers Outcome Agreement Tool2008In: Journal of Research in Nursing, ISSN 1744-9871, E-ISSN 1744-988X, Vol. 13, no 5, p. 391-407Article in journal (Refereed)
    Abstract [en]

    Given that the majority of frail older people living at home are cared for

    by family members, ensuring appropriate and sensitive support services for family

    carers is a major policy priority globally. Such assessment of the needs and situation

    of individual carers is a crucial first step towards ensuring that they receive flexible,

    quality support services. However, existing assessment practice is still inadequate in

    many countries. This paper describes a negotiated approach to carer assessment, the

    Carers Outcome Agreement Tool (COAT) and briefly considers its development

    with carers and practitioners in an Anglo-Swedish development project (2003

    and subsequent implementation within five municipalities in Sweden (2006

    A participatory research design was adopted in both projects building on the

    ÄldreVäst Sjuhärad model, which is a user-focused approach to research and

    development. This paper provides a short summary of the COAT development before

    presenting the qualitative findings from the Swedish implementation project

    (2006

    and telephone follow-up interviews with carers who had a first and second COAT

    assessment. The findings clearly highlight the value of COAT in enabling partnerships

    to be developed between carers and practitioners, which recognise the expertise of

    both parties. They also challenge providers to invest sufficient time and

    –2005)–2008).–2008), which emerged from focus group interviews with COAT practitioners‘ear-marked’

    resources for family care support so that COAT becomes an integral part of a 

    comprehensive long-term carer strategy, which feeds directly into local developments

    in service delivery and organisation.

  • 33.
    Hanson, Elizabeth
    et al.
    Linnaeus University, Faculty of Health, Social Work and Behavioural Sciences, School of Health and Caring Sciences.
    Magnusson, Lennart
    Linnaeus University, Faculty of Health, Social Work and Behavioural Sciences, School of Health and Caring Sciences.
    Nolan, Mike
    University of Sheffield.
    Using the ÄldreVäst Sjuhärad model to judge the quality of user involvement work within the COAT (Carers Outcome Agreement Tool) implementation project2011In: Brukarens roll i välfärdsforskning och utvecklingsarbete / [ed] Lars Rönnmark, Borås: Högskolan i Borås , 2011, p. 213-235Chapter in book (Other academic)
  • 34.
    Hanson, Elizabeth
    et al.
    Linnaeus University, Faculty of Health, Social Work and Behavioural Sciences, School of Health and Caring Sciences.
    Magnusson, Lennart
    Linnaeus University, Faculty of Health, Social Work and Behavioural Sciences, School of Health and Caring Sciences.
    Sennemark, Eva
    Blended Learning Networks Supported by Information and Communication Technology:  An Intervention for Knowledge Transformation Within Family Care of Older People2011In: The Gerontologist, ISSN 0016-9013, E-ISSN 1758-5341, Vol. 51, no 4, p. 561-570Article in journal (Refereed)
    Abstract [en]

    Purpose: This article describes an innovative practice called Blended Learning Networks (BLNs) whose aim is to enable older people, their families, and care providers to exchange knowledge, learn together, and support each other in local development work so that care is improved for older people. BLNs were established in 31 municipalities, headed up by a local facilitator. They were supported by a national themed network consisting of virtual meetings between local facilitators and national facilitators at the Swedish National Family Care Competence Centre. Design and Methods: An evaluation was conducted to explore the utility of the BLNs so that any improvements to the model could be instigated. Focus group interviews were conducted with members of 9 BLNs, and self-evaluation questions were discussed in 16 BLNs. Limitations are that not all BLN members participated in the evaluation, and local facilitators conducting self-evaluations were not trained in focus group dynamics. Virtual focus groups were carried out with 26 of the 31 local facilitators and with the national facilitators. Results: Participants reported an increased understanding of caregiver issues and of each group's roles. Of particular value were the stories shared by caregivers and the potential for change locally due to the involvement of decision makers. The practice demanded considerable skills of the local facilitators. An initial education for new local facilitators was deemed necessary. Implications: BLNs is a unique practice of community communications and knowledge transfer as it creates partnerships among all key stakeholder groups that act as a catalyst for improving care for older people.

  • 35.
    Hanson, Elizabeth
    et al.
    Linnaeus University, Faculty of Health, Social Work and Behavioural Sciences, School of Health and Caring Sciences.
    Magnusson, Lennart
    Linnaeus University, Faculty of Health, Social Work and Behavioural Sciences, School of Health and Caring Sciences.
    Svensson, Paul
    Arvevik, Fredrik
    Arvidsson, Helene
    Claesson, Anette
    Nolan, Mike
    University of Sheffield.
    The ACTION service: Experiences of user involvement within research and development work within care for older people2011In: Brukarens roll i välfärdsforskning och utvecklingsarbete / [ed] Lars Rönnmark, Borås: Högskolan i Borås , 2011, p. 183-199Chapter in book (Other academic)
  • 36.
    Hanson, Elizabeth
    et al.
    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,.
    Ärnström, Ulf
    Teknik för anhöriga som hjälper och vårdar: On a bicycle made for two. Behovsstudie2009Report (Other academic)
  • 37.
    Hanson, Elizabeth
    et al.
    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,.
    Ärnström, Ulf
    Utbildningsmaterial om partnerskap och anhörigvård, lärdomar och röster från lärande nätverk i sex kommuner2009Report (Other academic)
  • 38.
    Hanson, Elizabeth
    et al.
    Linnaeus University, Faculty of Health, Social Work and Behavioural Sciences, School of Health and Caring Sciences.
    Nolan, Mike
    University of Sheffield.
    Magnusson, Lennart
    Linnaeus University, Faculty of Health, Social Work and Behavioural Sciences, School of Health and Caring Sciences.
    User involvement in research and development in health and social welfare:  some key concepts and their application using a relational approach2011In: Brukarens roll i välfärdsforskning och utvecklingsarbete / [ed] Lars Rönnmark, Borås: Högskolan i Borås , 2011, p. 21-32Chapter in book (Other academic)
  • 39.
    Hanson, Elizabeth
    et al.
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Sennemark, Eva
    Magnusson, Lennart
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Anhörigas delaktighet och behov2019In: Hemsjukvård: olika perspektiv på trygg och säker vård / [ed] Mirjam Ekstedt & Maria Flink, Stockholm: Liber, 2019, 1 uppl., p. 209-226Chapter in book (Other academic)
  • 40.
    Hanson, Elizabeth
    et al.
    University of Kalmar, eHealth Institute, School of Human Sciences, University of Kalmar,.
    Svensson, Paul
    ACTION call centre, Borås Municipality.
    Arvevik, Fredrik
    ACTION call centre, Borås Municipality.
    Magnusson, Lennart
    University of Kalmar, eHealth Institute, School of Human Sciences, University of Kalmar,.
    ACTION (Assisting Carers using Telematic Interventions to meet Older people’s Needs):practioners´reflections on a Swedish innovation2007In: User participation in helath and social care research: voices, values and evaluation / [ed] Nolan M., Hanson E., Grant G., Keady J., Maidenhead: Open University Press , 2007, 1, p. 14-32Chapter in book (Other academic)
  • 41.
    Hanson, Elizabeth
    et al.
    University of Kalmar, eHealth Institute, School of Human Sciences, University of Kalmar,.
    Winqvist, Ingegerd
    ÄldreVäst Sjuhärad.
    Magnusson, Lennart
    University of Kalmar, eHealth Institute, School of Human Sciences, University of Kalmar,.
    Sennemark, Eva
    ÄldreVäst Sjuhärad.
    Meningsfull vardag i särskilt boende i Sjuhärad2007Report (Other academic)
    Abstract [en]

    Rapporten presenterar huvudfynden från ett samverkansprojekt mellan ÄldreVäst Sjuhärad och en kommun i Sjuhäradsbygden. Syftet var att i samarbete med boende, närstående samt vård- och omsorgspersonal undersöka innehållet i en meningsfull vardag för äldre på ett särskilt boende i Sjuhärad. Vidare att ge rekommendationer inför det framtida vård –och omsorgsarbetet för att därigenom öka de boendes livskvalitet och vård –och omsorgskvalitet, de närståendes tillfredsställelse med denna samt att öka arbetstillfredsställelsen för vård –och omsorgspersonal.

  • 42.
    Hanson, Elizabeth
    et al.
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Yghemonos, S
    Yeandle, Sue
    Lamura, Giovanni
    Cès, S
    Hlebec, V
    Hamblin, K
    Papa, R
    Piccini, F
    Magnusson, Lennart
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Towards carer-friendly systems in the European Union: the EU pillar of social rights as a framework for evidence-based policymaking- findings from the Eurocarers Research Working Group2019In: Symposium chair, 2019Conference paper (Refereed)
  • 43. Hjern, Anders
    et al.
    Berg, Lisa
    Arat, Arzu
    Klöfvermark, Josefin
    Manhica, Helio
    Rostila, Mikael
    Vinnerljung, Bo
    Hovstadius, Bo
    Ericsson, Lisa
    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.
    Children as next of kin in Sweden2017Report (Other academic)
    Abstract [sv]

    Översikten är en sammanfattning av åtta rapporter om barn som anhöriga i Sverige. Rapporterna har gjorts inom ramen för ett regeringsuppdrag om ett brett nationellt utvecklingsarbete där Socialstyrelsen, Folkhälsomyndigheten och Sveriges Kommuner och Landsting samarbetar för att stärka stödet till barn och unga i familjer med missbruk, allvarlig sjukdom eller psykisk ohälsa, eller då en förälder avlider.

  • 44.
    Hovstadius, Bo
    et al.
    Linnaeus University, Faculty of Health and Life Sciences, Department of Medicine and Optometry.
    Ericson, Lisa
    Linnaeus University, Faculty of Health and Life Sciences, Department of Medicine and Optometry.
    Magnusson, Lennart
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. Swedish Family Care Competence Centre (NKA).
    Barn som anhöriga: ekonomisk studie av samhällets långsiktiga kostnader2015Report (Other academic)
    Abstract [sv]

    Att barn och unga lever i hem med missbruk och/eller allvarlig sjukdom medför direkta och indirekta kostnader för samhället på kort och lång sikt. Denna hälsoekonomiska studie är en beräkning av samhällets årliga kostnad för den andel av befolkningen som vuxit upp som barn som anhörig till förälder med psykisk sjukdom eller missbruk av alkohol eller narkotika.

  • 45. Iwarsson, S
    et al.
    Kylberg, M
    Phillips, J
    Hanson, Elizabeth
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Magnusson, Lennart
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Van Regenmortel, S
    Haggblom Kronlöf, G
    Jonsson, O
    On user participation in ageing research2016In: Symposium, 2016Conference paper (Refereed)
  • 46. Iwarsson, S.
    et al.
    Kylberg, M.
    Phillips, J.
    Hanson, Elizabeth
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Magnusson, Lennart
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Van Regenmortel, S.
    Häggblom Kronlöf, G.
    Jonsson, O.
    On user participation in ageing research2016Conference paper (Other academic)
  • 47. Johansson, Maria
    et al.
    Wåhlin, Ingrid
    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.
    Nursing staff's experiences of intensive care unit diaries: a qualitative study.2019In: Nursing in Critical Care, ISSN 1362-1017, E-ISSN 1478-5153Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Diaries as an intervention to aid psychological recovery among intensive care patients have been used for about 20 years, and findings tend to be positive. The provision of a diary directed at the patient may clarify the story of the intensive care unit (ICU) even for the family members and the family members of non-survivors. Members of nursing staff are the primary authors, but how they themselves experience the use of ICU diaries has been minimally explored.

    AIMS AND OBJECTIVES: This study aimed to explore how nursing staff experienced the use of ICU patient diaries.

    DESIGN: Qualitative design using focus group interviews.

    METHODS: A qualitative methodology was used. Six focus group interviews were conducted with 27 nursing staff recruited from one university and two county hospitals. The data were analysed via thematic content analysis.

    FINDINGS: One overarching theme, 'An effort to do good in words and actions', and four interconnected themes were derived from the analysis. By creating the diary, nursing staff had to deal with a variety of ethical and practical dilemmas, but feedback from patients, family members and ICU follow-up services reinforced the feeling of doing good. This overarching feeling of beneficence encouraged diary authoring and increased motivation and commitment to strive towards excellent patient care. To sustain the use of ICU diaries, collegiate and organizational support was deemed essential.

    CONCLUSIONS: Nursing staff strived to do good in words and actions for patients and their families when writing the diaries. Positive feedback from patients, family members and ICU follow-up services reinforced feelings of doing good, which served to enhance work satisfaction and a commitment to good-quality nursing care. Experiential-based education was recommended to help sustain ICU diary writing.

    RELEVANCE TO CLINICAL PRACTICE: Nursing staff requested mentoring and group discussions concerning the format, content and communication channels of the diary.

  • 48.
    Johansson, Maria
    et al.
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. Kalmar County Hospital;Kalmar County Council.
    Wåhlin, Ingrid
    Kalmar County Hospital;Kalmar County Council.
    Magnusson, Lennart
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Runeson, Ingrid
    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.
    Family members' experiences with intensive care unit diaries when the patient does not survive2018In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 32, no 1, p. 233-240Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: The aim of the study was to explore how family members experienced the use of a diary when a relative does not survive the stay in the intensive care unit (ICU).

    METHOD: A qualitative method with a hermeneutic approach was used. Nine participants who read/wrote eight diaries in total were interviewed. The collected data were analysed using a hermeneutic technique inspired by Geanellos.

    FINDINGS: The analysis revealed an overall theme 'the diary was experienced as a bridge connecting the past with the future', which was a metaphor referring to the temporal aspect where there was the period with the diary up until the patient's death and then the postbereavement period. The diary contributed to both a rational and emotional understanding of the death of the patient and disclosed glimmers of light that still existed before the illness deteriorated. Further, the diary bridged the space between family members themselves and between family and nursing staff. It helped to maintain a feeling of togetherness and engagement in the care of the patient which family members found comforting.

    CONCLUSION: Family members of nonsurvivors had a need to have the ICU time explained and expressed. The diary might work as a form of 'survival kit' to gain coherence and understanding; to meet their needs during the hospital stay; and, finally, to act as a bereavement support by processing the death of the patient.

  • 49.
    Johansson, Pauline
    et al.
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Magnusson, Lennart
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Systematisk uppföljning av stödinsatser för barn som anhöriga2015Conference paper (Other academic)
  • 50. Johansson, Pauline
    et al.
    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.
    Unga omsorgsgivare, möjligheter och utmaningar inom skolan - Pilotstudie inom projektet ”Motivation leder till framgång” i Kalmar län. (I manus publiceras 2020). Nationellt kompetenscentrum anhörigaManuscript (preprint) (Other academic)
12 1 - 50 of 70
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