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  • 1.
    Allemann, Hanna
    et al.
    Linköping University, Sweden.
    Andréasson, Frida
    Linnaeus University, Faculty of Social Sciences, Department of Social Work.
    Hanson, Elizabeth
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. Swedish Family Care Competence Centre, Sweden.
    Magnusson, Lennart
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. Swedish Family Care Competence Centre, Sweden.
    Jaarsma, Tiny
    Linköping University, Sweden.
    Thylén, Ingela
    Linköping University, Sweden.
    Strömberg, Anna
    Linköping University, Sweden.
    The co-design of an online support programme with and for informal carers of people with heart failure: A methodological paper2023In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 32, no 19-20, p. 7589-7604Article in journal (Refereed)
    Abstract [en]

    Abstract AimTo describe the co-designing process of an online support programme with and for informal carers of people with heart failure.DesignA co-design process built on core concepts and ideas embedded in co-design methodology.Data sources Our co-design process included three phases involving 32 informal caregivers and 25 content creators; (1) Identification of topics and content through literature searches, focus group interviews and user group sessions; (2) Development of the online support programme and; (3) Refinement and finalization which included testing a paper prototype followed by testing the online version and testing and approval of the final version of the support programme.Outcomes The co-design process resulted in a support programme consisting of 15 different modules relevant to informal carers, delivered on a National Health Portal.Conclusion Co-design is an explorative process where researchers need to balance a range of potentially conflicting factors and to ensure that the end users are genuinely included in the process.Relevance to clinical practice Emphasizing equal involvement of end users (e.g. carers or patients) in the design and development of healthcare interventions aligns with contemporary ideas of person-centred care and provides a valuable learning opportunity for those involved. Furthermore, a co-designed online support programme has the capacity to be both accessible and meet end users' information and support needs, thereby optimizing their self-care abilities. Additionally, an online support programme provides the opportunity to address current challenges regarding scarce resources and the lack of healthcare personnel.Reporting methodsConsolidated criteria for reporting qualitative research (COREQ).Patient or public contributionBoth informal carers and content creators were involved in developing the support programme.

  • 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.
    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, E-ISSN 2397-883X , 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.

  • 3.
    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.

  • 4. 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

  • 5.
    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.

  • 6.
    Andersson, Stefan
    et al.
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    McKee, Kevin
    Dalarna University, Sweden.
    Magnusson, Lennart
    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.
    Hanson, Elizabeth
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Valued and received forms of support among Swedish working carers of older people: a descriptive study with focus on ICT-mediated support2019In: Technology and Disability, ISSN 1055-4181, E-ISSN 1878-643X, Vol. 31, no 4, p. 189-202Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Working family carers are an important resource for the care of older people but can experience negativepressures without support.

    OBJECTIVE: This study examined the perceived value of forms of support and the level of receipt of valued forms of supportamong Swedish working carers, with a focus on information and communication technology (ICT)-mediated support.

    METHODS: A convenience sample (N = 129) of working carers caring for an older (> 65 years) relative completed a webbasedquestionnaire that addressed: caring characteristics; work-care conflict; and valued and received forms of support.

    RESULTS: Overall non-ICT forms of support were the most highly valued, while receipt of valued support was low: on averageonly 16.9% of participants who valued ICT-mediated forms of support received such support, while the figure was only slightlyhigher (23.4%) for non-ICT forms of support. Higher levels of work-care conflict were associated with higher perceived value ofsupport for 13 out of fourteen forms of support.

    CONCLUSIONS: The findings suggest that ICT-mediated and non-ICT forms of support should be regarded as complementary,while the low level of receipt of valued forms of support could indicate high levels of unmet need in working carers. Implicationsfor further research and policy on working carers are considered.

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  • 7.
    Andreasson, Jesper
    et al.
    Linnaeus University, Faculty of Social Sciences, Department of Sport Science.
    Johansson, Thomas
    University of Gothenburg, Sweden.
    Magnusson, Lennart
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Marginalisation, Radicalisation and Prevention in Sweden: Implementing Policy Measures Through GLM-Based and Youth-Led Research2019In: Violent youth radicalisation: Youth-led evidence from the UK, Greece, Cyprus, Romania, Portugal,Sweden and Italy / [ed] Theo Gavrielides, London: IARS Publications , 2019, p. 60-67Chapter in book (Other academic)
  • 8.
    Andreasson, Jesper
    et al.
    Linnaeus University, Faculty of Social Sciences, Department of Sport Science. Linnaeus University, Linnaeus Knowledge Environments, Education in Change.
    Johansson, Thomas
    University of Gothenburg, Sweden.
    Magnusson, Lennart
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Violent Youth Radicalisation in Sweden: The issue and the YEIP prevent model2020In: New directions in preventing youth radicalisation: Comparative and summary findings from the youth empowerment and innovation project (YEIP) / [ed] Theo Gavrielides, London: IARS Publications , 2020, p. 88-94Chapter in book (Other academic)
  • 9.
    Andreasson, Jesper
    et al.
    Linnaeus University, Faculty of Social Sciences, Department of Sport Science.
    Johansson, Thomas
    University of Gothenburg, Sweden.
    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.

  • 10.
    Andréasson, Frida
    et al.
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. Region Kalmar County, Sweden.
    Aidemark, Jan
    Linnaeus University, Faculty of Technology, Department of Informatics.
    Magnusson, Lennart
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. Region Kalmar County, Sweden.
    Strömberg, Anna
    Linköping University, Sweden.
    Hanson, Elizabeth
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. Region Kalmar County, Sweden.
    Lifeworld in co-designing with informal carers2019In: Journal of Enabling Technologies, ISSN 2398-6263, 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.

  • 11.
    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.

  • 12.
    Barbabella, Francesco
    et al.
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. The Swedish Family Care Competence Centre (NKA), Sweden.
    Magnusson, Lennart
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. The Swedish Family Care Competence Centre (NKA), Sweden.
    Boccaletti, Licia
    Anziani e Non Solo Società Cooperativa Sociale, Italy.
    Casu, Giulia
    Anziani e Non Solo Società Cooperativa Sociale, Italy;University of Bologna, Italy.
    Hlebec, Valentina
    University of Ljubljana, Slovenia.
    Bolko, Irena
    University of Ljubljana, Slovenia.
    Lewis, Feylyn
    Vanderbilt University, USA;University of Sussex, UK.
    Hoefman, Renske
    The Netherlands Institute for Social Research (SCP), Netherlands.
    Brolin, Rosita
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. The Swedish Family Care Competence Centre (NKA), Sweden.
    Santini, Sara
    IRCCS INRCA-National Institute of Health and Science on Aging, Italy.
    Socci, Marco
    IRCCS INRCA-National Institute of Health and Science on Aging, Italy.
    D’Amen, Barbara
    IRCCS INRCA-National Institute of Health and Science on Aging, Italy.
    de Jong, Yvonne
    Vilans—The National Centre of Expertise for Long-Term Care in The Netherlands, Netherlands.
    Bouwman, Tamara
    Vilans—The National Centre of Expertise for Long-Term Care in The Netherlands, Netherlands.
    de Jong, Nynke
    Vilans—The National Centre of Expertise for Long-Term Care in The Netherlands, Netherlands.
    Leu, Agnes
    University of Basel, Switzerland;Kalaidos University of Applied Sciences, Switzerland.
    Phelps, Daniel
    Kalaidos University of Applied Sciences, Switzerland; University of Winchester, UK.
    Guggiari, Elena
    Kalaidos University of Applied Sciences, Switzerland.
    Wirth, Alexandra
    Kalaidos University of Applied Sciences, Switzerland; Careum, Switzerland.
    Morgan, Vicky
    Carers Trust, UK.
    Becker, Saul
    University of Sussex, UK;Manchester Metropolitan University, UK.
    Hanson, Elizabeth
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. The Swedish Family Care Competence Centre (NKA), Sweden.
    Recruitment of Adolescent Young Carers to a Psychosocial Support Intervention Study in Six European Countries: Lessons Learned from the ME-WE Project2023In: International Journal of Environmental Research and Public Health, ISSN 1661-7827, E-ISSN 1660-4601, Vol. 20, no 6, article id 5074Article in journal (Refereed)
    Abstract [en]

    Young carers provide a substantial amount of care to family members and support to friends, yet their situation has not been actively addressed in research and policy in many European countries or indeed globally. Awareness of their situation by professionals and among children and young carers themselves remains low overall. Thus, young carers remain a largely hidden group within society. This study reports and analyses the recruitment process in a multi-centre intervention study offering psychosocial support to adolescent young carers (AYCs) aged 15–17 years. A cluster-randomised controlled trial was designed, with recruitment taking place in Italy, the Netherlands, Slovenia, Sweden, Switzerland and the United Kingdom exploiting various channels, including partnerships with schools, health and social services and carers organisations. In total, 478 AYCs were recruited and, after screening failures, withdrawals and initial dropouts, 217 were enrolled and started the intervention. Challenges encountered in reaching, recruiting and retaining AYCs included low levels of awareness among AYCs, a low willingness to participate in study activities, uncertainty about the prevalence of AYCs, a limited school capacity to support the recruitment; COVID-19 spreading in 2020–2021 and related restrictions. Based on this experience, recommendations are put forward for how to better engage AYCs in research.

  • 13. 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.

  • 14.
    Boustedt Hedvall, Maria
    et al.
    National Board of Health and Welfare, Sweden.
    Johansson, Pauline
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. Swedish Family Care Competence Center, Sweden.
    Lundström, Agnes
    National Board of Health and Welfare, Sweden.
    Magnusson, Lennart
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. Swedish Family Care Competence Center, Sweden.
    Hanson, Elizabeth
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. Swedish Family Care Competence Center, Sweden.
    A ten-year national strategic collaboration to support children-as-next-of-kin in Sweden - What have we done so far?2021In: Presented at the 3rd International Young Carers conference, Online, May 3-6, 2021, 2021Conference paper (Other (popular science, discussion, etc.))
    Abstract [en]

    In 2010, a rather unique legislation was introduced in Sweden that healthcare professionals must pay special attention to children-as-next-of-kin and their needs for information, advice, and support. Based on that, between 2011 and 2020, the National Board of Health and Welfare (NBHW) has had a governmental commission to promote developmental work focused on children-as-next-of-kin. The work has been carried out in close collaboration with other national and regional authorities as well as competence centers. Through increased knowledge and the construction of sustainable structures, both social and health care services have received support in order to better apply a child- and family perspective in their work with families facing different difficulties.

    Through the assignment, the NBHW has had a strategic collaboration with the Swedish Family Care Competence Center (SFCCC), a national competence center for the support of informal carers, together with the Linnaeus University. Since 2012, the SFCCC has received special funding from the NBHW in order to develop its work focusing on children-of-next-of-kin. The assignment including producing and disseminating knowledge, working with exchange of experiences, systematic follow-up and learning networks. The goal is to increase knowledge about children-of-next-of-kin among politicians, decision-makers and professionals in regions, municipalities, scholars, and NGO’s, and giving empowerment to identify, listen to and support children-as-next-of-kin. This presentation is about what we have done so far.

     

  • 15.
    Brolin, Rosita
    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. Swedish Family Care Competence Ctr, Sweden.
    Magnusson, Lennart
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. Swedish Family Care Competence Ctr, Sweden.
    Lewis, Feylyn
    Vanderbilt Univ, USA.
    Parkhouse, Tom
    Univ Sussex, UK.
    Hlebec, Valentina
    Univ Ljubljana, Slovenia.
    Santini, Sara
    IRCCS, Italy.
    Hoefman, Renske
    Netherlands Inst Social Res SCP, Netherlands.
    Leu, Agnes
    Univ Basel, Switzerland.
    Becker, Saul
    Manchester Metropolitan Univ, UK.
    Adolescent Young Carers Who Provide Care to Siblings2024In: Healthcare, E-ISSN 2227-9032, Vol. 12, no 3, article id 316Article in journal (Refereed)
    Abstract [en]

    A child's disability, long-term illness, or mental ill-health is known to affect siblings' health, social life, school engagement, and quality of life. This article addresses a research gap by its focus on young sibling carers and the impact of providing care to a sibling. A cross-national survey study was conducted in 2018-2019 (Italy, the Netherlands, Slovenia, Sweden, Switzerland, the UK) to examine the incidence of adolescent sibling carers, the extent of care they provide, and their self-reported health, well-being, and school situation. The survey was completed by 7146 adolescents, aged 15-17, and 1444 of them provided care to family members with health-related conditions. Out of these, 286 were identified as Sibling Carers and 668 as Parent Carers, while 181 had both sibling(s) and parent(s) with health-related conditions, and thus were identified as Sibling-Parent Carers. Sibling Carers and Sibling-Parent Carers carried out higher levels of caring activities compared to Parent Carers. They reported both positive aspects of caring, such as increased maturity, and negative aspects, such as mental ill-health, impact on schooling and a lack of support. To reduce the negative aspects of a sibling carer role, it is important to recognise them and to implement early preventive measures and formal support.

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  • 16.
    Brolin, Rosita
    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. Swedish Family Care Competence Centre, Sweden.
    Magnusson, Lennart
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. Swedish Family Care Competence Centre, Sweden.
    Lewis, Feylyn
    Vanderbilt University School of Nursing, USA.
    Parkhouse, Tom
    University of Sussex, UK.
    Hlebec, Valentina
    University of Ljubljana, Slovenia.
    Santini, Sara
    National Institute of Health and Science on Ageing (INRCA), Italy.
    Hoefman, Renske
    The Netherlands Institute for Social Research (SCP), Netherlands.
    Leu, Agnes
    University of Basel, Switzerland.
    Becker, Saul
    University of Sussex, UK;Manchester Metropolitan University, UK.
    Adolescent Young Carers Who Provide Help and Support to Friends2023In: Healthcare, E-ISSN 2227-9032, Vol. 11, no 21, article id 2876Article in journal (Refereed)
    Abstract [en]

    Prior studies emphasize the value of friends’ support for children/adolescents who have a disability or suffer from mental ill-health or a long-term illness. However, few studies have explored how a caring role affects those young friend carers themselves. This paper addresses a gap in the research by focusing on this hitherto neglected group of young carers to explore the impact of providing care to friends. An online survey was employed for a cross-national study conducted in 2018–2019 in Sweden, Italy, Slovenia, the Netherlands, Switzerland, and the United Kingdom to examine the incidence of adolescent young friend carers, the extent of care they provide, and their self-reported health, well-being, and school situation. The survey was completed by 7146 adolescents, aged 15–17, and 1121 of them provided care to a friend with a health-related condition, most frequently mental ill-health. They carried out high levels of caring activities, and a quarter of them also provided care to a family member. They experienced both positive and negative aspects of caring. Nevertheless, in comparison with adolescents who provided care to family members, they reported more health problems, with a dominance of mental ill-health, and they received lower levels of support. Since adolescent friends play a valuable role for young people with health-related conditions, especially mental ill-health, it is important to find ways of optimizing their caring experiences in order that those adolescents who choose to care for a friend can do so without it having a negative impact on their own mental health, well-being, and life situation.

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  • 17. 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)
  • 18. 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)
  • 19. 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.))
  • 20.
    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.

  • 21.
    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.

  • 22.
    Ekman, Björn
    et al.
    Lund University, Sweden.
    McKee, Kevin
    Dalarna University, Sweden.
    Vicente, Joana
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. Swedish Family Care Competence Centre, Sweden.
    Magnusson, Lennart
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. Swedish Family Care Competence Centre, Sweden.
    Hanson, Elizabeth
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. Swedish Family Care Competence Centre, Sweden.
    Cost analysis of informal care: estimates from a national cross-sectional survey in Sweden2021In: BMC Health Services Research, E-ISSN 1472-6963, Vol. 21, no 1, article id 1236Article in journal (Refereed)
    Abstract [en]

    Background

    Over the past decades, informal care has increased in most OECD-countries. Informal care is costly to caregivers and to society in the form of lost income and direct costs of providing care. Existing evidence suggests that providing informal care affects caregivers' overall health. However, estimates of the social costs of informal care based on national data on individuals are currently scarce.

    Objective

    This study contributes to the existing evidence on the costs of informal care by estimating the direct and indirect costs to caregivers using a purposive national household survey from Sweden.

    Methods

    Adopting a bottom-up, prevalence approach, the direct and indirect costs are estimated using the survey data and the value of working time and leisure time from existing sources.

    Results

    The results suggest that around 15% of the adult population of Sweden provide informal care and that such care costs around SEK 152 billion per year (around 3% of GDP; USD 16,3 billion; EUR 14,5 billion), or SEK 128000 per caregiver. Around 55% of costs are in the form of income loss to caregivers. The largest cost items are reduced work hours and direct costs of providing informal care. Replacing informal caregivers with professional care providers would be costly at around SEK 193,6 billion per year.

    Conclusions

    Findings indicate that, even in a country with a relatively generous welfare system, significant resources are allocated toward providing informal care. The costing analysis suggests that effective support initiatives to ease the burden of informal caregivers may be cost-effective.

  • 23.
    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.

  • 24.
    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.

  • 25.
    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)
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    FULLTEXT01
  • 26.
    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.

  • 27.
    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)
  • 28.
    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)
  • 29.
    Hanson, Elizabeth
    et al.
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. Swedish Family Care Competence Centre (NKA), Sweden.
    Barbabella, Francesco
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. Swedish Family Care Competence Centre (NKA), Sweden.
    Magnusson, Lennart
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. Swedish Family Care Competence Centre (NKA), Sweden.
    Brolin, Rosita
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. Swedish Family Care Competence Centre (NKA), Sweden.
    Svensson, Miriam
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. Swedish Family Care Competence Centre (NKA), Sweden.
    Yghemonos, Stecy
    Eurocarers, Belgium.
    Hlebec, Valentina
    University of Ljubljana, Slovenia.
    Bolko, Irena
    University of Ljubljana, Slovenia.
    Boccaletti, Licia
    Anziani e Non Solo Società Cooperativa Sociale, Italy.
    Casu, Giulia
    University of Bologna, Italy.
    Hoefman, Renske
    The Netherlands Institute for Social Research (SCP), Netherlands.
    de Boer, Alice H.
    The Netherlands Institute for Social Research (SCP), Netherlands.
    de Roos, Simone
    The Netherlands Institute for Social Research (SCP), Netherlands.
    Santini, Sara
    National Institute of Health and Science on Ageing (INRCA), Italy.
    Socci, Marco
    National Institute of Health and Science on Ageing (INRCA), Italy.
    D’Amen, Barbara
    National Institute of Health and Science on Ageing (INRCA), Italy.
    Van Zoest, Frans
    Vilans–The National Centre of Expertise for Long-Term Care in The Netherlands, Netherlands.
    de Jong, Nynke
    Vilans–The National Centre of Expertise for Long-Term Care in The Netherlands, Netherlands.
    Nap, Henk Herman
    Vilans–The National Centre of Expertise for Long-Term Care in The Netherlands, Netherlands.
    de Jong, Yvonne
    Vilans–The National Centre of Expertise for Long-Term Care in The Netherlands, Netherlands.
    Bouwman, Tamara
    Vilans–The National Centre of Expertise for Long-Term Care in The Netherlands, Netherlands.
    Lewis, Feylyn
    Vanderbilt University School of Nursing, USA.
    Parkhouse, Tom
    University of Sussex, UK.
    Leu, Agnes
    Kalaidos University of Applied Sciences, Switzerland;University of Basel, Switzerland.
    Phelps, Daniel
    Kalaidos University of Applied Sciences, Switzerland;University of Winchester, UK.
    Guggiari, Elena
    Kalaidos University of Applied Sciences, Switzerland.
    Morgan, Vicky
    Carers Trust, UK.
    Centola, Francesca
    Eurocarers, Belgium;Mental Health Europe, Belgium.
    Joseph, Stephen
    University of Nottingham, UK.
    Becker, Saul
    University of Sussex, UK;Manchester Metropolitan University, UK.
    Research and Innovation for and with Adolescent Young Carers to Influence Policy and Practice—The European Union Funded “ME-WE” Project2022In: International Journal of Environmental Research and Public Health, ISSN 1661-7827, E-ISSN 1660-4601, Vol. 19, no 16, article id 9932Article in journal (Refereed)
    Abstract [en]

    Young carers are children and adolescents who provide care to other family members or friends, taking over responsibilities that are usually associated with adulthood. There is emerging but still scarce knowledge worldwide about the phenomenon of young carers and the impact of a caring role on their health, social and personal development spheres. This paper provides an overview of the main results from the ME-WE project, which is the first European research and innovation project dedicated to adolescent young carers (AYCs) (15–17 years). The project methods relied on three main activities: (1) a systematization of knowledge (by means of a survey to AYCs, country case studies, Delphi study, literature review); (2) the co-design, implementation and evaluation of a primary prevention intervention addressing AYCs’ mental health (by means of Blended Learning Networks and a clinical trial in six European countries); (3) the implementation of knowledge translation actions for dissemination, awareness, advocacy and lobbying (by means of national and international stakeholder networks, as well as traditional and new media). Project results substantially contributed to a better understanding of AYCs’ conditions, needs and preferences, defined tailored support intervention (resilient to COVID-19 related restrictions), and significant improvements in national and European policies for AYCs.

    Download full text (pdf)
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  • 30.
    Hanson, Elizabeth
    et al.
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. The Swedish Family Care Competence Centre (NKA), Swede.
    Lewis, Feylyn
    Vanderbilt University School of Nursing, USA.
    Barbabella, Francesco
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. The Swedish Family Care Competence Centre (NKA), Sweden.
    Hoefman, Renske
    The Netherlands Institute for Social Research (SCP), Netherlands.
    Casu, Giulia
    University of Bologna, Italy.
    Boccaletti, Licia
    Anziani e non solo società cooperativa sociale ,Italy.
    Leu, Agnes
    University of Basel, Switzerland.
    Hlebec, Valentina
    University of Ljubljana, Slovenia.
    Bolko, Irena
    University of Ljubljana, Slovenia.
    Santini, Sara
    IRCCS INRCA-National Institute of Health and Science on Aging, Italy.
    Svensson, Miriam
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. The Swedish Family Care Competence Centre (NKA), Sweden.
    Becker, Saul
    Manchester Metropolitan University, UK.
    Magnusson, Lennart
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. The Swedish Family Care Competence Centre (NKA), Sweden.
    Ethical Considerations When Conducting Pan-European Research with and for Adolescent Young Carers2023In: Ethics and social welfare, ISSN 1749-6535, E-ISSN 1749-6543, Vol. 17, no 2, p. 125-158Article in journal (Refereed)
    Abstract [en]

    Adolescent young carers (AYCs) are a sub-group of young carers who carry out significant or substantial caring tasks and assume a level of responsibility which would usually be associated with an adult. They are a potentially vulnerable group of minors because of the risk factors associated with their caring role. AYCs face a critical transition phase from adolescence to adulthood often with a lack of tailored support from service providers. The recently completed European funded ‘ME-WE’ project, which forms the focus of this paper, aimed to change the ‘status quo’ by advancing the situation of AYCs in Europe, via responsive research and knowledge translation actions. This paper outlines the participatory, co-creation approach employed in the project to optimise AYC’s involvement. It describes the ethical framework adopted by the project consortium to ensure the wellbeing of AYCs within all project activities. Ethical issues that arose in the field study work in all six countries are presented, followed by a discussion of the level of success or otherwise of the consortium to address these issues. The paper concludes with lessons learned regarding ethically responsible research with and for AYCs that are likely transferable to other vulnerable research groups and pan-European projects.

  • 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.
    ACTION – arbete i partnerskap för ökad vård och  omsorgskvalitet: Progressrapport för VINNVÅRD2010Report (Other (popular science, discussion, etc.))
  • 32.
    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)
  • 33.
    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)
  • 34.
    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)
  • 35.
    Hanson, Elizabeth
    et al.
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. Swedish Family Care Competence Centre (NKA), Sweden.
    Magnusson, Lennart
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. Swedish Family Care Competence Centre (NKA), Sweden.
    Quality of long term care from a carer perspective: a commissioned study to inform the national quality plan for care of older people in Sweden2019In: 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]

    The presentation will highlight findings from a report commissioned by the independent investigator for the National Quality Plan for Care of Older People. In Sweden, a traditional welfare model of care for older people has come under increasing threat in recent years leading to a pattern of de-universalisation of care, an increase in for-profit provision of publicly funded care for older people and an increase in informal/family care.   This contextual backdrop provides the rationale for the commissioned study that focused on the role of informal/ family carers of older people within long term care.

    The overall aim was to explore what makes for a good quality of care for older people from a carer perspective? The specific aims were:

    1. To map carers’ experiences and preferences regarding quality of long term care for an older relative
    2. To identify potential differences in experiences in relation to gender, class and cultural background
    3. Suggest priority areas for policy, practice and research

    The study was underpinned by the ‘carers as experts’ model in which carers and practitioners are viewed as co-experts, each with differing yet complementary forms of knowledge. The study comprised a systematic literature review and findings  were validated  via three focus group interviews and individual  interviews with representatives from pensionist, disability and carer organisations and decision makers from the municipality and health care region (n= 21).

    The main findings focused on the theme of a sense of security together with five interrelated themes. Despite a policy rhetoric of equal care, older people and carers tend to be treated differently depending on their education, work/social position, gender, ethnic origin, religious beliefs, disability, sexual preferences and age.

    To conclude, current quality indicators need to include a carer perspective and gaps in the research include studies focusing on service provision in older people’s own homes.

  • 36.
    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.

  • 37.
    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.
    Understanding carer health and well-being2017In: Presented at the 21st IAGG World Congress of Gerontology and Geriatrics, San Francisco, California, USA, July 23-27, 2017, 2017Conference paper (Other academic)
  • 38.
    Hanson, Elizabeth
    et al.
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. Swedish Family Care Competence Centre (NKA), Sweden.
    Magnusson, Lennart
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. Swedish Family Care Competence Centre (NKA), Sweden.
    Young carer involvement in the EU H2020 ME-WE project2019In: Symposium presentation at "It takes a village..." International Conference: Families experiencing substance abuse, mental or physical health problems, Oslo, Norway, May 14-16, 2019, 2019Conference paper (Refereed)
  • 39.
    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.))
  • 40.
    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
    University of Borås, Sweden.
    Claesson, Anette
    University of Borås, Sweden.
    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.

  • 41.
    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)
  • 42.
    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.))
  • 43.
    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.

  • 44.
    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)
  • 45.
    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.

  • 46.
    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)
  • 47.
    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)
  • 48.
    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)
  • 49.
    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)
  • 50.
    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)
12 1 - 50 of 99
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