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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, Gunnel
    et al.
    Hanson, Elizabeth
    Linnaeus University, Faculty of Health, Social Work and Behavioural Sciences, School of Health and Caring Sciences.
    Livskvalitet hos anhöriga som vårdar en äldre närstående med inkontinens: En svensk delrapport av ett EU-projekt initierad av SCA och Eurocarers2012Report (Other academic)
    Abstract [sv]

    Att vara anhörigvårdare till en äldre närstående med inkontinens kan innebära ett tjugofyratimmars arbete och ansvar, som inte delas med någon annan. En emotionell och fysisk börda, där den egna hälsan får stå tillbaka till förmån för den närståendes väl. Dessutom innebär det för en del anhörigvårdare en instängdhet och ett minskat socialt liv. Samtidigt betraktade flera omsorgen om sin anhörige som en naturlig del och uttryckte önskan att göra det möjligt för denne att bo hemma så länge som möjligt. Det är viktigt att anhörigvårdarens situation uppmärksammas i ett tidigt skede av sjukvården och speciellt av landstinget, för att kunna möjliggöra information och stöd om problemet inkontinens, såväl som om övrig vård samt hjälp som finns att tillgå i samhället.

  • 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.
    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.

  • 4.
    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.

  • 5. 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

  • 6.
    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.

  • 7.
    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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  • 8.
    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.

  • 9.
    Andréasson, Frida
    et al.
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Andreasson, Jesper
    Linnaeus University, Faculty of Social Sciences, Department of Sport Science.
    Hanson, Elizabeth
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Developing a carer identity and negotiating everyday life through social networking sites2017In: Innovation in Aging, E-ISSN 2399-5300, Vol. 1, no Suppl_1, p. 465-466Article in journal (Other academic)
    Abstract [en]

    Research highlights that a key overarching reason why family carers do not utilize support services is that many people who perform the duties of caregiving do not necessarily self-identify as a carer. Understanding the development of carer identities may thus be understood as crucial for the utilization of different health services directed towards carers. Based on the EU funded Innovage project, this project aims to describe and analyse how older carers supporting and caring for an older person understand and socially negotiate their life situation and identity as carers on a Swedish online social forum. Theoretically the project departs from a constructionist approach and methodologically it has been inspired by a specifically designed method for studying the cultures and communities that emerge from online computer-mediated or Internet-based communications, called netnography. The results indicate that in the process through which a carer role is acquired, a significant change in self-perception occurs. The presence or absence of recognition for the older carers’ capacity, is understood as filtered through the needs of the cared for person, making the carer identity into an invisible self. At the same time, the opportunity for online communication may help to create a virtual space of social recognition through which negative and positive experiences attached to caring can be discussed. The significance of online communication is here understood as the possibility to be recognized, and feel empowered by other carers.

  • 10.
    Andréasson, Frida
    et al.
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Andreasson, Jesper
    Linnaeus University, Faculty of Social Sciences, Department of Sport Science.
    Hanson, Elizabeth
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Developing a carer identity and negotiating everyday life through social networking sites: An explorative study on identity constructions in an online Swedish carer community2018In: Ageing & Society, ISSN 0144-686X, E-ISSN 1469-1779, Vol. 38, no 11, p. 2304-2324Article in journal (Refereed)
    Abstract [en]

    An overarching reason why carers do not utilise support services is that many people who perform care-giving do not necessarily self-identify as a carer. Understanding the development of carer identities is therefore crucial for the utilisation of different carer-focused health services. This study arose from the European Union-funded INNOVAGE project and aimed to describe how older carers conceptualise and understand their identity as carers on a Swedish online social forum. Theoretically the study adopts a constructionist approach and the method of netnography was applied. The findings reveal that a change in self-perception occurs in the process through which a carer role is acquired. The presence or absence of recognition for the older carers’ capacity, knowledge and life situation is seen as filtered through the needs of the care recipient, making the carer identity into an invisible self. This is not least the case when the identity is constructed in alliance with conceptual and moral obligations found within a marital discourse. Nevertheless, the opportunity for online communication may help to create a virtual space of social recognition through which different experiences attached to caring can be discussed. The significance of online communication is here understood as the possibility it presents for carers to be recognised by other carers. It is a process through which an invisible self can become visible.

  • 11.
    Andréasson, Frida
    et al.
    Swedish Family Care Competence Centre (NKA).
    Hanson, Elizabeth
    Swedish Family Care Competence Centre (NKA).
    Dissemination event Sweden2015Conference paper (Other (popular science, discussion, etc.))
  • 12.
    Andréasson, Frida
    et al.
    Swedish Family Care Competence Centre (NKA).
    Hanson, Elizabeth
    Swedish Family Care Competence Centre (NKA).
    Lamura, Giovanni
    National Institute of Health and Science on Ageing (INRCA), Italy.
    Barbabella, Francesco
    National Institute of Health and Science on Ageing (INRCA), Italy.
    Lancioni, Cristina
    National Institute of Health and Science on Ageing (INRCA), Italy.
    Papa, Roberta
    National Institute of Health and Science on Ageing (INRCA), Italy.
    Poli, Arianna
    Italian National Institute of Health and Science on Aging (INRCA) ; Linköping University.
    Salzmann, Benjamin
    National Institute of Health and Science on Ageing (INRCA), Italy.
    Döhner, Hanneli
    Eurocarers, Belgium.
    Efthymiou, Areti
    Eurocarers, Belgium.
    Anhörigstöd via internet: InformCare2015Conference paper (Other (popular science, discussion, etc.))
  • 13.
    Andréasson, Frida
    et al.
    Swedish Family Care Competence Centre (NKA).
    Hanson, Elizabeth
    Swedish Family Care Competence Centre (NKA).
    Lancioni, Cristina
    National Institute of Health and Science on Ageing (INRCA), Italy.
    Papa, Roberta
    National Institute of Health and Science on Ageing (INRCA), Italy.
    Barbabella, Francesco
    National Institute of Health and Science on Ageing (INRCA), Italy.
    Lamura, Giovanni
    National Institute of Health and Science on Ageing (INRCA), Italy.
    Online support for carers: using a social forum and social network as a means of developing the role of informal caregiving2015In: Presented at the 6th International Carers Conference - Care and caring: future proofing the new demographics, Gothenburg, Sweden, September 3-6, 2015, 2015Conference paper (Refereed)
  • 14.
    Andréasson, Frida
    et al.
    Swedish Family Care Competence Centre (NKA).
    Hanson, Elizabeth
    Eurocarers, Belgium.
    Lancioni, Cristina
    National Institute of Health and Science on Ageing (INRCA), Italy.
    Papa, Roberta
    National Institute of Health and Science on Ageing (INRCA), Italy.
    Barbabella, Francesco
    National Institute of Health and Science on Ageing (INRCA), Italy.
    Lamura, Giovanni
    National Institute of Health and Science on Ageing (INRCA), Italy.
    The INNOVAGE-Eurocarers platform and current ICT-based services for informal carers of older people in Sweden2015In: Irish Ageing Studies Review, ISSN 1649-9972, Vol. 6, no 1, p. 88-88Article in journal (Refereed)
    Abstract [en]

    Background: Different support services for family carers are available in Sweden through information and communication technologies (ICTs) since late 1990s, like ACTION, My Joice, IPPI, ‘The Gap’, and Carer Sweden’s online ‘Carer’s Book’. The INNOVAGE-Eurocarers platform aimed to complement the offer of web services to carers through the provision of a new tailored package.

    Methods: The Swedish pilot test enrolled around 50 carers through contacts with professionals working with carers in different municipalities. They could access the following web-based services: information resources; individual support via e-mail and private messages; group support via social network and forum. Periodical writing activities were asked to active users in the forum, alternating expressive writing (EW) and time management (TM) writing tasks. Periodical reminders were sent in order to increase user involvement.

    Results: Users were predominantly older, female carers, of which two thirds were over 65 years old. The web platform was perceived as a flexible tool, potentially accessible at any time, which gave users the possibility to exploit their experience as carers with others in similar situations. This peer exchange seemed to improve self empowerment, sense of solidarity and mutual learning. However, usage of the web platform was limited due to the low level of digital skills of some carers.

    Conclusions: Although results confirmed usefulness and appropriateness of implemented web services, it is fundamental to address the issue of usability and accessibility in order to ensure a wider accessibility. An option might be to offer initial digital skill training and continuous technical support for computer novices.

  • 15.
    Andréasson, Frida
    et al.
    Swedish Family Care Competence Centre (NKA).
    Hanson, Elizabeth
    Eurocarers, Belgium.
    Lancioni, Cristina
    National Institute of Health and Science on Ageing (INRCA), Italy.
    Papa, Roberta
    National Institute of Health and Science on Ageing (INRCA), Italy.
    Barbabella, Francesco
    National Institute of Health and Science on Ageing (INRCA), Italy.
    Lamura, Giovanni
    National Institute of Health and Science on Ageing (INRCA), Italy.
    The INNOVAGE-Eurocarers platform and current ICT-based services for informal carers of older people in Sweden2015Conference paper (Refereed)
    Abstract [en]

    Background: Different support services for family carersare available in Sweden through information andcommunication technologies (ICTs) since late 1990s, likeACTION, My Joice, IPPI, ‘The Gap’, and Carer Sweden’son-line ‘Carer’s Book’. The INNOVAGE-Eurocarersplatform aimed to complement the offer of web services tocarers through the provision of a new tailored package.

    Methods: The Swedish pilot test enrolled around 50carers through contacts with professionals working withcarers in different municipalities. They could access thefollowing web-based services: information resources;individual support via e-mail and private messages; groupsupport via social network and forum. Periodical writingactivities were asked to active users in the forum,alternating expressive writing (EW) and time management(TM) writing tasks. Periodical reminders were sent in orderto increase user involvement.

    Results: Users were predominantly older, female carers,of which two thirds were over 65 years old. The webplatform was perceived as a flexible tool, potentiallyaccessible at any time, which gave users the possibility toexploit their experience as carers with others in similarsituations. This peer exchange seemed to improve selfempowerment,sense of solidarity and mutual learning.However, usage of the web platform was limited due to thelow level of digital skills of some carers.

    Conclusions: Although results confirmed usefulness andappropriateness of implemented web services, it isfundamental to address the issue of usability andaccessibility in order to ensure a wider accessibility. Anoption might be to offer initial digital skill training andcontinuous technical support for computer novices.

  • 16.
    Andréasson, Frida
    et al.
    Swedish Family Care Competence Centre (NKA).
    Hanson, Elizabeth
    Swedish Family Care Competence Centre (NKA) ; Eurocarers, Belgium.
    Poli, Arianna
    Italian National Institute of Health and Science on Aging (INRCA) ; Linköping University.
    Barbabella, Francesco
    Italian National Institute of Health and Science on Aging (INRCA).
    Lancioni, Cristina
    Italian National Institute of Health and Science on Aging (INRCA).
    Papa, Roberta
    Italian National Institute of Health and Science on Aging (INRCA).
    Lamura, Giovanni
    Italian National Institute of Health and Science on Aging (INRCA).
    The use of on-line social network and services by family carers with high digital skills: The case of the Swedish sample2016Conference paper (Refereed)
    Abstract [en]

    AIMS. The InformCare platform aimed to complement the offer of already available web services to carers through the provision of a new comprehensive package.

    METHODS. 36 family carers were enrolled in Sweden and used the platform during the intervention. They could access the following web-based services: information resources; individual support via e-mail and private messages; group support via social network and forum. Periodical writing activities were asked to active users in the forum, alternating expressive writing (EW) and time management (TM) writing tasks.

    FINDINGS. Users were predominantly older, female carers, who considered the web platform as a flexible tool, potentially accessible at anytime, which could empower users and improve their sense of solidarity and mutual learning.

    CONCLUSIONS. Although results confirmed usefulness and appropriateness of implemented web services, some carers experienced problems in accessing and navigation, which required continuous technical support by web developers.

  • 17.
    Andréasson, Frida
    et al.
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. Swedish Family Care Competence Centre, Sweden.
    Mattsson, Tina
    Lund University, Sweden.
    Hanson, Elizabeth
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. Swedish Family Care Competence Centre, Sweden.
    ‘The balance in our relationship has changed’: everyday family living, couplehood and digital spaces in informal spousal care2023In: Journal of Family Studies, ISSN 1322-9400, E-ISSN 1839-3543, Vol. 29, no 2, p. 719-737Article in journal (Refereed)
    Abstract [en]

    Building on an ethnographic approach, this study aims to explore how the notion of couplehood and family life is understood and negotiated in everyday life by older carers and their spouses. Inspired by Morgan’s perspective on the doing of family life, and Hochschild’s analysis of emotion work and feeling rules, the article shows how the process of becoming a carer/care recipient creates a new life situation for couples. The findings show that gendered tasks of family life such as housework and financial responsibilities change between spouses, and new practicalities emerge. This in turn changes the power balance between the spouses and how they do couplehood. The findings also reveal how the participants’ sense of we and I are negotiated to do family life, with regards to their health, sense of moral obligation, personal autonomy, love and caregiving. A sense of social isolation is apparent, and social media, apps and online games are sometimes used to create digital spaces in which participants can maintain connections with friends and children, find solitude and regain energy by getting a temporary pause from spousal informal care. Such strategies enable couples to find balance and a sense of autonomy in their lives as a family.

  • 18. Barbabella, Francesco
    et al.
    Efthymiou, A.
    Lancioni, C.
    Döhner, H.
    Goodwin, F.
    Hanson, Elizabeth
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Andréasson, F.
    Salzman, D.
    Poli, A.
    Papa, R.
    Mackay, M.
    Lamura, G.
    Deliverable D3.1 Report on the web-based support specification2013Report (Other academic)
  • 19. Barbabella, Francesco
    et al.
    Efthymiou, A.
    Poli, A.
    Döhner, H.
    Hanson, Elizabeth
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Lancioni, C.
    Annibali, M.
    Andréasson, F.
    Salzman, D.
    Papa, R.
    Yghemonos, S.
    Centola, F.
    Lamura, G.
    Deliverable D3.2 Publication of the final implementation of the web platform2015Report (Other academic)
  • 20.
    Barbabella, Francesco
    et al.
    National Institute of Health and Science on Ageing (INRCA), Italy.
    Efthymiou, Areti
    Eurocarers, Belgium.
    Poli, Arianna
    National Institute of Health and Science on Ageing (INRCA), Italy.
    Lancioni, Cristina
    National Institute of Health and Science on Ageing (INRCA), Italy.
    Andréasson, Frida
    Swedish Family Care Competence Centre (NKA).
    Salzmann, Benjamin
    National Institute of Health and Science on Ageing (INRCA), Italy.
    Hanson, Elizabeth
    Swedish Family Care Competence Centre (NKA).
    Döhner, Hanneli
    Eurocarers, Belgium.
    Goodwin, Frank
    Eurocarers, Belgium.
    Lamura, Giovanni
    National Institute of Health and Science on Ageing (INRCA), Italy.
    A multilingual web platform supporting informal carers in 27 EU member states2015In: Broader, bigger, better: AAL solutions for Europe. Proceedings of the 6th AAL Forum 2014 / [ed] Adrian Curaj & Ioana Trif, Bucharest: UEFISCDI , 2015, p. 169-172Conference paper (Refereed)
    Abstract [en]

    Informal care is a hot topic in research and policy agendas at European and national level, since it greatly contributes to the sustainability and efficiency of national health care systems. A specific intervention – part of the wider INNOVAGE project funded by FP7 – was planned for developing and testing a new multilingual web platform for informal carers of dependent older people in the EU-27. Preliminary results of the pilot study, conducted in Italy, Germany and Sweden will be discussed. The final platform will be accessible in all official languages of the EU-27 and publicly available in spring 2015.

  • 21.
    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.

  • 22.
    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.

  • 23.
    Barbabella, Francesco
    et al.
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. National Institute of Health and Science on Ageing (INRCA), Italy.
    Poli, Arianna
    National Institute of Health and Science on Ageing (INRCA), Italy ; Linköping University.
    Andréasson, Frida
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. Swedish Family Care Competence Centre (NKA), Sweden.
    Salzmann, Benjamin
    National Institute of Health and Science on Ageing (INRCA), Italy ; wir pflegen e.V., Germany.
    Papa, Roberta
    National Institute of Health and Science on Ageing (INRCA), Italy.
    Hanson, Elizabeth
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. Swedish Family Care Competence Centre (NKA), Sweden ; Eurocarers, Belgium.
    Efthymiou, Areti
    Eurocarers, Belgium ; Cyprus University of Technology, Cyprus.
    Döhner, Hanneli
    wir pflegen e.V., Germany ; Eurocarers, Belgium.
    Lancioni, Christina
    National Institute of Health and Science on Ageing (INRCA), Italy.
    Civerchia, Patrizia
    National Institute of Health and Science on Ageing (INRCA), Italy.
    Lamura, Giovani
    National Institute of Health and Science on Ageing (INRCA), Italy.
    A web-based psychosocial intervention for family caregivers of older people: results from a mixed-methods study in three European countries2016In: JMIR Research Protocols, E-ISSN 1929-0748, Vol. 5, no 4, p. 1-16, article id e196Article in journal (Refereed)
    Abstract [en]

    Background: Informal caregiving is the main source of care for older people in Europe. An enormous amount of responsibility and care activity is on the shoulders of family caregivers, who might experience problems in their psychological well-being and in reconciling caregiving and their personal sphere. In order to alleviate such burden, there is increasing interest and growing research in Europe on Web-based support addressing family caregivers and their needs. However, the level of development and penetration of innovative Web-based services for caregivers is still quite low and the access to traditional face-to-face services can be problematic for logistic, availability, and quality reasons.

    Objective: As part of the European project INNOVAGE, a pilot study was conducted for developing and testing a Web-based psychosocial intervention aimed at empowering family caregivers of older people in Italy, Sweden, and Germany. The program offered information resources and interactive services to enable both professional and peer support.

    Methods: A mixed-methods, sequential explanatory design was adopted. Caregivers’ psychological well-being, perceived negative and positive aspects of caregiving, and social support received were assessed before and after the 3-month intervention. Poststudy, a subsample of users participated in focus groups to assist in the interpretation of the quantitative results.

    Results: A total of 94 out of 118 family caregivers (79.7%) from the three countries used the Web platform at least once. The information resources were used to different extents in each country, with Italian users having the lowest median number of visits (5, interquartile range [IQR] 2-8), whereas German users had the highest number (17, IQR 7-66) (P<.001). The interactive services most frequently accessed (more than 12 times) in all countries were the social network (29/73, 40%) and private messages (27/73, 37%). The pretest-posttest analysis revealed some changes, particularly the slight worsening of perceived positive values of caregiving (Carers of Older People in Europe [COPE] positive value subscale: P=.02) and social support received (COPE quality-of-support subscale: P=.02; Multidimensional Scale of Perceived Social Support subscale: P=.04), in all cases with small effect size (r range -.15 to -.18). Focus groups were conducted with 20 family caregivers and the content analysis of discussions identified five main themes: online social support, role awareness, caregiving activities, psychological well-being, and technical concerns. The analysis suggested the intervention was useful and appropriate, also stimulating a better self-efficacy and reappraisal of the caregivers’ role.

    Conclusions: The intervention seemed to contribute to the improvement of family caregivers’ awareness, efficacy, and empowerment, which in turn may lead to a better self-recognition of their own needs and improved efforts for developing and accessing coping resources. A major implication of the study was the finalization and implementation of the InformCare Web platform in 27 European countries, now publicly accessible (www.eurocarers.org/informcare).

  • 24.
    Barbabella, Francesco
    et al.
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. Italian Natl Inst Hlth & Sci Ageing, Italy.
    Poli, Arianna
    Italian Natl Inst Hlth & Sci Ageing, Italy;Linköping University, Sweden.
    Hanson, Elizabeth
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. Swedish Family Care Competence Centre, Sweden;Eurocarers Berlin, Germany.
    Andréasson, Frida
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. Swedish Family Care Competence Centre, Sweden.
    Salzmann, Benjamin
    Italian Natl Inst Hlth & Sci Ageing, Italy;Wir Pflegen eV, Germany.
    Doehner, Hanneli
    Eurocarers, Germany;Wir Pflegen eV, Germany.
    Papa, Roberta
    Italian Natl Inst Hlth & Sci Ageing, Italy.
    Efthymiou, Areti
    Eurocarers, Germany;Cyprus Univ Technol, Cyprus.
    Valenza, Silvia
    Italian Natl Inst Hlth & Sci Ageing, Italy.
    Pelliccioni, Giuseppe
    Italian Natl Inst Hlth & Sci Ageing, Italy.
    Lamura, Giovanni
    Italian Natl Inst Hlth & Sci Ageing, Italy.
    Usage and Usability of a Web-based Program for Family Caregivers of Older People in Three European Countries: A Mixed-Methods Evaluation2018In: Computers, Informatics, Nursing, ISSN 1538-2931, E-ISSN 1538-9774, Vol. 36, no 5, p. 232-241Article in journal (Refereed)
    Abstract [en]

    InformCare is a European Web platform that supports informal caregivers of older people by providing access to online information and professional and peer support. The aim of this study was to assess the usage and usability of a psychosocial Web-based program carried out in three European countries (Italy, Sweden, and Germany). A mixed-methods sequential explanatory design was adopted, comprising baseline and postintervention assessments, as well as combined thematic content analysis of results and focus group findings. A convenience sample of 118 caregivers was enrolled, of whom 94 used the services offered by the program at least once. The subsamples in the three countries used the platform in different ways, with a predominance of passive strategies (eg, seeking information and reading other people's comments) for Italian caregivers, and more active usage by Swedish and German caregivers. The usability assessment showed that the platform was perceived well by Italian and German caregivers, whereas technical problems affected the Swedish sample's experiences. Focus group data highlighted user satisfaction with the online support and reliability of the environment. Recommendations for practitioners are to ensure digital training for caregivers who have lower confidence in use of the Internet, to involve different healthcare professionals in the provision of professional support, and to adequately manage online community building.

  • 25. 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.

  • 26.
    Bergman, Ann-Sofie
    et al.
    Linnaeus University, Faculty of Social Sciences, Department of Social Work.
    Axberg, Ulf
    University of Gothenburg.
    Hanson, Elizabeth
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. University of Sheffield, UK.
    When a parent dies: a systematic review of the effects of support programs for parentally bereaved children and their caregivers2017In: BMC Palliative Care, E-ISSN 1472-684X, Vol. 16, p. 1-15, article id 39Article in journal (Refereed)
    Abstract [en]

    Background: The death of a parent is a highly stressful life event for bereaved children. Several studies have shown an increased risk of mental ill-health and psychosocial problems among affected children. The aims of this study were to systematically review studies about effective support interventions for parentally bereaved children and to identify gaps in the research.

    Methods: The review’s inclusion criteria were comparative studies with samples of parentally bereaved children. The focus of these studies were assessments of the effects on children of a bereavement support intervention. The intervention was directed towards children 0–18 years;but it could also target the children’s remaining parent/caregiver. The study included an outcome measure that dealt with effects of the intervention on children. The following electronic databases were searched up to and including November 2015: PubMed, PsycINFO, Cinahl, PILOTS, ProQuest Sociology (Sociological Abstracts and Social Services Abstracts). The included studies were analysed and summarized based on the following categories: type of intervention, reference and grade of evidence, study population, evaluation design, measure, outcome variable and findings as effect size within and between groups.

    Results: One thousand, seven hundred and six abstracts were examined. Following the selection process, 17 studies were included. The included studies consisted of 15 randomized controlled studies, while one study employed a quasi-experimental and one study a pre-post-test design. Thirteen studies provided strong evidence with regards to the quality of the studies due to the grade criteria; three studies provided fairly strong evidence and one study provided weaker evidence. The included studies were published between 1985 and 2015, with the majority published 2000 onwards. The studies were published within several disciplines such as psychology, social work, medicine and psychiatry, which illustrates that support for bereaved children is relevant for different professions. The interventions were based on various forms of support: group interventions for the children, family interventions, guidance for parents and camp activities for children. In fourteen studies, the interventions were directed at both children and their remaining parents. These studies revealed that when parents are supported, they can demonstrate an enhanced capacity to support their children. In three studies, the interventions were primarily directed at the bereaved children. The results showed positive between group effects both for children and caregivers in several areas, namely large effects for children’s traumatic grief and parent’s feelings of being supported; medium effects for parental warmth, positive parenting, parent’s mental health, grief discussions in the family, and children’s health. There were small effects on several outcomes, for example children’s post-traumatic stress disorder (PTSD) symptoms, anxiety, depression, self-esteem and behaviour problems. There were studies that did not show effects on some measures, namely depression, present grief, and for the subgroup boys on anxiety, depression, internalizing and externalizing.

    Conclusions: The results indicate that relatively brief interventions can prevent children from developing more severe problems after the loss of a parent, such as traumatic grief and mental health problems. Studies have shown positive effects for both children’s and remaining caregiver’s health. Further research is required including how best to support younger bereaved children. There is also a need for more empirically rigorous effect studies in this area.

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  • 27.
    Bergman, Ann-Sofie
    et al.
    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.
    Barn som är anhöriga när en förälder avlider: en kunskapsöversikt om effekt av metoder för stöd till barn2014Report (Other academic)
    Abstract [sv]

    Denna kunskapsöversikt handlar om stöd till barn när en förälder avlider. En utgångspunkt är tilläggen i Hälso- och sjukvårdslagen (SFS 2009:979) § 2g och Patientsäkerhetslagen (SFS 2010:659) kap. 6 § 5 om att samhällets hälso- och sjukvård ska beakta barns behov av information, råd och stöd om barnets förälder eller någon annan vuxen som barnet varaktigt bor tillsammans med har en psykisk störning eller en psykisk funktionsnedsättning; har en allvarlig fysisk sjukdom eller skada; är missbrukare av alkohol eller annat beroendeframkallande medel; eller om barnets förälder eller någon annan vuxen som barnet varaktigt bor tillsammans med oväntat avlider.

    Syftet med kunskapsöversikten är att systematiskt söka, granska och sammanställa kunskap om verksamma metoder för att ge stöd till barn vars förälder eller omsorgsperson avlider. Ett syfte är vidare att identifiera fortsatt kunskapsbehov. Följande frågeställningar är i fokus för översikten:

    • Hur ser kunskapsläget ut om effekter av interventioner för att ge stöd till barn vars förälder avlider?
    • Vilka metoder har prövats och utvärderats med fokus på effekter för barnen?
    • Vilket behov av ny kunskap kan identifieras utifrån resultaten i kunskapsöversikten?

    I arbetet med kunskapsöversikten har drygt 1700 referenser granskats för att finna relevanta effektstudier. Vid urvalet har Socialstyrelsens metodbeskrivning för genomförande av systematiska översikter varit vägledande, vilken vilar på The Cochrane Handbook for Systematic Review of Interventions (http://handbook.cochrane.org/). Studiedesignen kan vara randomiserad kontrollerad studie (RCT) eller kvasiexperimentell studie. Då effektutvärderingar av denna typ är relativt få inom området har även studier med design som bygger på pre-test och post-test inkluderats.

    Urvalskriterier i processen har varit att interventionen riktas till barn i åldern 0-18 år. Interventionen kan förutom att riktas till barnen också riktas till de kvarlevande föräldrarna. För att inkluderas i översikten ska något utfallsmått handla om interventionens effekt för barnen. Efter selektion har slutligen 16 vetenskapliga referenser inkluderats. Dessa har publicerats under perioden 1985-2014, de flesta under 2000-talet. Inkluderade studier har publicerats inom flera ämnen såsom psykologi, socialt arbete, medicin, psykiatri, vilket illustrerar att frågan om stöd till barn vars förälder avlider är relevant för flera yrkesgrupper.

    De utvärderade interventionerna beskrivs relativt ingående i kunskapsöversikten, för att ge inspiration till utvecklingsarbete. De beskrivna interventionerna bygger på olika stödformer: gruppinterventioner, familjeinterventioner, föräldrastöd, lägerverksamhet. I tre av 16 studier har interventionen i första hand riktats till barnen, men det vanligaste är att den har riktats till både barnen och deras kvarlevande föräldrar. Avsikten med att inkludera föräldrar har varit att ge stöd till föräldrarna för att de i sin tur ska få bättre förmåga att stödja sina barn.

    De flesta inkluderade studier har randomiserad kontrollerad studiedesign. En studie bygger på kvasiexperimentell design och en på pre-post-design, där mätning av symtom har gjorts före och efter intervention, för att mäta effekter. En intervention utmärker sig i översikten, The Family Bereavement Program, då den ingår med tio artiklar. Programmet har utvärderats utifrån olika sätt att mäta utfall och med en uppföljningstid på upp till sex år. I de inkluderade studierna används en mängd olika utfallsmått för att mäta interventionernas effekter, flest relaterar till barnens hälsa, framför allt den psykiska hälsan, och till den kvarlevande förälderns föräldraförmåga.

    Översikten visar att interventioner har gett signifikanta effekter för barn och föräldrar inom flera områden. Studierna visar sammantaget att förhållandevis begränsade insatser kan förebygga att barn utvecklar svårare problem. Utifrån aktuellt kunskapsläge ger översikten stöd för att interventioner till barn vars förälder avlider behöver riktas till både barnet och barnets kvarlevande förälder/omsorgsgivare.

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  • 28.
    Bergman, Ann-Sofie
    et al.
    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.
    Bereavement for children when a parent dies2015In: Presented at the 6th International Carers Conference - Care and caring: future proofing the new demographics, Gothenburg, Sweden, September 3-6, 2015, 2015Conference paper (Refereed)
  • 29.
    Bergman, Ann-Sofie
    et al.
    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.
    Effekt av metoder för stöd till barn när en förälder avlider: Kortversion av Kunskapsöversikt 2014:12015Report (Other academic)
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  • 30.
    Bergman, Ann-Sofie
    et al.
    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.
    Effekter av anknytningsbaserade interventioner för yngre barn och deras omvårdnadspersoner: En kunskapsöversikt2016Report (Other academic)
    Abstract [sv]

    Denna kunskapsöversikt har fokus på anknytningsbaserade interventioner till spädbarn och yngre barn (0–5 år) och deras närmaste omvårdnadspersoner. Anknytning handlar om barns behov av trygghet och närhet till minst en anknytningsperson för att kunna utvecklas och använda sina egna resurser. En trygg anknytning i relationen mellan barn och omvårdnadsperson är relaterat till positivt långsiktigt utfall för barnen.

    I ett internationellt perspektiv har ett flertal behandlingsmetoder utvecklats under de senaste decennierna för att främja samspel och barns anknytning. Det är effekter av sådana interventioner som är i fokus för denna översikt.

    Syftet är att systematiskt kartlägga, granska och sammanställa kunskap om effektstudier av metoder för samspelsbehandling samt att göra en analys av kunskapsläget i ett effektsammanhang. Följande frågeställningar är i fokus: Vilka metoder för samspelsbehandling har utvärderats med fokus på behandlingens effekter för barns anknytning och omvårdnadspersoners lyhördhet? Hur ser kunskapsläget ut vad gäller effekter av utvärderade metoder? Vilka slutsatser kan dras om behov av fortsatt forskning?

    Översikten är avgränsad till interventioner som ges av professionella och där populationen tillhör någon riskgrupp i ett anknytningsperspektiv. Mer än två tusen referenser har granskats. Slutligen har 31 referenser inkluderats vilka behandlar 16 olika metoder. Samtliga studier har randomiserad kontrollerad design. De har genomförts i USA, Nederländerna,Kanada, Storbritannien, Portugal och Sverige.

    Metoderna syftar till att förbättra omvårdnadspersonernas förmåga att uppfatta sina barns signaler och ge dem ett lyhört gensvar. Medan några metoder är inriktade på att förändra omvårdnadspersonernas beteende är andra inriktade på att förändra deras egna anknytningsrepresentationer. I det senare fallet är avsikten att omvårdnadspersonerna ska bli medvetna om hur deras egna tidigare relationserfarenheter kan påverka deras relation till sitt barn. Behandlingen syftar till att ge omvårdnadspersonerna en korrektiv emotionell erfarenhet som i sin tur ska öka deras lyhördhet och intoning i relation till sina barn. Det finns också metoder som är inriktade på att ge socialt stöd till omvårdnadspersonerna.

    De flesta metoder ges i familjernas hemmiljö. Det finns en stor variation i omfattning, alltifrån tre sessioner upp till behandling under flera års tid. I några interventioner arbetar behandlarna med videoinspelningar där omvårdnadspersonerna får feedback på samspelet med sina barn. Behandlingen har i de allra flesta fall getts till dyaden mor-barn.Det är få fäder som deltar i interventionerna. Det finns exempel på metoder som riktas till fosterbarn och deras omvårdnadspersoner.

    Flera studier har visat signifikanta effekter för barns anknytning och/eller omvårdnadspersoners lyhördhet/känslomässiga tillgänglighet. Det finns studier som har visat effekt i form av minskad andel barn med desorganiserad anknytning, vilket är det anknytningsmönster som är tydligast förknippat med problem för barn senare under utvecklingen. Det finns även studier som förutom effekter för anknytning och samspel har visat effekter för barnens hälsa och utveckling samt omvårdnadspersonernas hälsa, upplevelse av stöd och förbättrade relationer till personer i deras närmaste omgivning. Det är betydelsefulla resultat i sammanhanget för att främja barns anknytning och omvårdnadspersoners lyhördhet.

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  • 31.
    Bergman, Ann-Sofie
    et al.
    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.
    Stöd till barn när en förälder avlider2015In: Att se barn som anhöriga - om beroende i relationer, interventioner och omsorgsansvar: Antologi / [ed] Ulrika Järkestig Bergren, Lennart Magnusson, Elizabeth Hanson, Kalmar/Växjö: Nationellt kompetenscentrum anhöriga, Linnéuniversitetet , 2015, p. 201-227Chapter in book (Other academic)
    Abstract [sv]

    Att förlora en förälder i dödsfall är mycket påfrestande för barn under uppväxten. När en förälder avlider innebär det en kris och omvälvande förändring. Förlusten får stora konsekvenser, då det rör sig om att förlora en person som står för kärlek, trygghet och daglig omsorg. Förutsägbarhet och stabilitet i tillvaron påverkas negativt.  Förlusten av en eller båda föräldrarna har samband med en större utsatthet och sårbarhet för barn. I kapitlet behandlas konsekvenser för barnen vid en förälders dödsfall, riskfaktorer och skyddande faktorer för barnen, aktuellt forskningsläge om effekter av stödinterventioner riktade till barnen, samt forskning om barns upplevelser av sina behov och av vad som har varit till stöd för dem efter förlusten.

    De utvärderade interventionerna bygger på olika former av stöd till barn och föräldrar, såsom stödgrupper och lägerverksamhet för barn, familjestöd samt föräldrastöd. Forskningsgenomgången om effekter av stöd ger indikation på att stödinterventioner kan förebygga att barn utvecklar allvarligare problem efter förlusten av en förälder. Utifrån aktuellt kunskapsläge finns det stöd för att interventioner till barn vars förälder avlider behöver riktas till både barnet och till barnets kvarvarande förälder/omsorgsgivare. Stöd till kvarvarande föräldrar kan förbättra deras egen hälsa och främja deras föräldraförmåga, så att de kan ge bättre stöd till sina barn. Samtidigt behöver stöd riktas direkt till barnen. Därutöver har gemensamt stöd till barn och föräldrar med fokus på familjeinteraktion och familjekommunikation visats ge positiv effekt.

    Kvalitativa studier visar att barnen har uppskattat att delta i stödinterventioner då det har hjälpt dem att se att de inte är ensamma i sin situation. Vidare beskriver barn att det har varit till hjälp för dem att få ge uttryck för känslor, sorg, förlust, att känna sig förstådd, att få kunskap och förståelse, samt att även få göra roliga saker/aktiviteter trots sorgen.

  • 32.
    Bergström, Aileen L.
    et al.
    Karolinska Institutet.
    Hanson, Elizabeth
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. Swedish Family Care Competence Centre (NKA).
    An integrative review of information and communication technology based support interventions for carers of home dwelling older people2017In: Technology and Disability, ISSN 1055-4181, E-ISSN 1878-643X, Vol. 29, no 1-2, p. 1-14Article in journal (Refereed)
    Abstract [en]

    BACKGROUND A growing number of studies of informal carers of older people reveal positive results concerning support via Information and Communication Technologies (ICT). Systematic examination of factors that have a potential impact on carer outcomes are needed to inform future research.

    OBJECTIVE To explore studies concerning ICT support of adult carers of older people and to identify study characteristics that have a potential impact on carer outcomes.

    METHODS This integrative review includes 123 studies published since 2005. Fundamental questions for designing sensitive support interventions; ‘who, what, and how’ were applied to a synthesis of the results.

    RESULTS Identified characteristics from the studies responding to the who question included variables of the carers, such as their relationship with the care recipient or their ethnicity. Characteristics related to the what question related to the types of interventions, and the how question concerned the different services or programs offered, the idiosyncratic needs of the carers, and the types of technologies used.

    CONCLUSION Results are discussed according to micro, meso and macro levels of analysis. This extensive review can inform future studies and highlight the evidence in the area for decision makers, practitioners and/or NGOs working with innovative forms of support for carers of older people

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  • 33.
    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.

     

  • 34.
    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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  • 35.
    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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  • 36.
    Carlsund, Åsa
    et al.
    Swedish Family Care Competence Centre (NKA);Mid Sweden University.
    Johansson, Pauline
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. Swedish Family Care Competence Centre (NKA), Sweden.
    Hammare, Ulf
    Swedish Family Care Competence Centre (NKA), Sweden;Ersta Sköndal University College, Sweden.
    Hanson, Elizabeth
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. Swedish Family Care Competence Centre (NKA), Sweden.
    Support for children as next of kin and systematic follow up: group leaders’ and managers’ perspectives within non-profit organizations in Sweden2017In: Open Family Studies Journal, ISSN 1874-9224, Vol. 9, p. 49-59, article id TOFAMSJ-9-49Article in journal (Refereed)
    Abstract [en]

    Method: The aim of this study was to explore the systematic follow up of supportive activities in non-profit organizations targeted at childrenas next of kin. Managers and group leaders were interviewed, and findings were content analysed.

    Result: The findings indicated that a child focus, education, safety and trust were important. These factors were observed as the primarytasks and the key reason for being involved in supportive activities. Managers expressed concern about not retaining funding, if the organization was unable to demonstrate the effects of their activities. Namely, to enhance the health and wellbeing of children. In order to continuously develop their work most organisations explained that they used some form of system for follow up. However,there was a wide variation in how non-profit organizations worked with follow ups.

    Conclusion: Overall, it was evident that there was a major need for education and support in this area.

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  • 37.
    Casu, Giulia
    et al.
    University of Bologna, Italy.
    Hlebec, Valentina
    University of Ljubljana, Slovenia.
    Boccaletti, Licia
    Anziani e Non Solo Società Cooperativa Sociale, Italy.
    Bolko, Irena
    University of Ljubljana, Slovenia.
    Alessandra, Manattini
    Anziani e Non Solo Società Cooperativa Sociale, Italy.
    Hanson, Elizabeth
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Promoting mental health and well‐being among adolescent young carers in Europe: a randomized controlled trial protocol2021In: International Journal of Environmental Research and Public Health, ISSN 1661-7827, E-ISSN 1660-4601, Vol. 18, no 4, p. 1-23, article id 2045Article in journal (Refereed)
    Abstract [en]

    It is estimated that 4–8% of youth in Europe carry out substantial care for a familymember or significant other. To prevent adverse psychosocial outcomes in young carers (YCs),primary prevention resilience building interventions have been recommended. We describe thestudy protocol of an international randomized controlled trial (RCT) of an innovative group interventiondesigned to promote the mental health and well‐being of adolescent YCs (AYCs) aged15–17. The RCT will be conducted in six European countries in the context of the Horizon 2020European funded research and innovation project “Psychosocial support for promoting mentalhealth and well‐being among adolescent young caregivers in Europe” (“ME‐WE”). The ME‐WEintervention is based on Hayes and Ciarrochi’s psychoeducational model for adolescents and willconsist of seven 2‐h sessions in a group format, aimed to help AYCs build psychological flexibilityand live according to their values. The control group will be a waitlist. Primary and secondaryoutcomes and control variables will be measured at baseline (T0), post‐intervention (T1) and 3months follow‐up (T2). The COVID‐19 pandemic has made amendments necessary to the originalstudy protocol methodology, which we describe in detail. This study will contribute to building anevidence‐based manualized program that educators and health and social care professionals canuse to support AYCs in their transition to adulthood. From a research perspective, the outcomes ofthis study will contribute to evidence‐based practices in primary prevention of psychosocial difficultiesin AYCs and will gather novel knowledge on the effectiveness of Hayes and Ciarrochi’smodel for use with middle adolescents with caring responsibilities. The trial has been preregistered (registration number: NCT04114864).

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  • 38. 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)
  • 39. 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)
  • 40.
    Clarke, Amanda
    et al.
    University of Sheffield, UK.
    Hanson, Elizabeth
    University of Kalmar, eHealth Institute, School of Human Sciences, University of Kalmar,. University of Sheffield, UK.
    Ross, Helen
    University of Sheffield, UK.
    Seeing the person behind the patient: enhancing the care of older people using a biographical approach2003In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 12, no 5, p. 697-706Article in journal (Refereed)
    Abstract [en]

    • Recent policy statements have stressed the need for fundamental changes to the NHS, especially to the hospital care of older people. Person-centred care underpins such changes. If practitioners are to deliver person-centred care, then they need to learn more about the patient as an individual. One way that this might be achieved is through biographical approaches.

    • This paper describes the findings of a developmental study undertaken over a 6-month period to investigate the introduction of a biographical approach to care on a unit in a NHS hospital. It concentrates on the views of the practitioners who used the approach.

    • The study aimed to explore whether a biographical approach – in the form of storytelling – might be used to encourage person-centred practice.

    • Using a practice development approach, the study explored the views of older people, their family carers and practitioners regarding their participation in life story work.

    • Initial data were collected by focus groups with staff from a nursing home who regularly used life stories as a basis for care planning. Further data were collected through focus groups, semistructured interviews and observation – undertaken before and after the introduction of life story work – with older people, family carers and practitioners.

    • Findings revealed that life stories helped practitioners to see patients as people, to understand individuals more fully and to form closer relationships with their families. Support workers also said how much they enjoyed using the approach to inform their care.

    • Further longitudinal research is required to investigate biographical approaches more fully and to work more closely with practitioners to explore how biographical approaches can be undertaken as part of standard practice and be integrated into the culture and management of care.

  • 41.
    D’Amen, Barbara
    et al.
    IRCCS INRCA-National Institute of Health and Science on Aging, Italy.
    Socci, Marco
    IRCCS INRCA-National Institute of Health and Science on Aging, Italy.
    Di Rosa, Mirko
    IRCCS INRCA-National Institute of Health and Science on Aging, Italy.
    Casu, Giulia
    University of Bologna, Italy.
    Boccaletti, Licia
    Anziani e Non Solo Società Cooperativa Sociale, Italy.
    Hanson, Elizabeth
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. Swedish Family Care Competence Centre, Sweden.
    Santini, Sara
    IRCCS INRCA-National Institute of Health and Science on Aging, Italy.
    Italian Adolescent Young Caregivers of Grandparents: Difficulties Experienced and Support Needed in Intergenerational Caregiving—Qualitative Findings from a European Union Funded Project2022In: International Journal of Environmental Research and Public Health, ISSN 1661-7827, E-ISSN 1660-4601, Vol. 19, no 1, article id 103Article in journal (Refereed)
    Abstract [en]

    The article aims to describe the experiences of 87 Italian adolescent young caregivers (AYCs) of grandparents (GrPs), with reference to the caregiving stress appraisal model (CSA) that provides a theoretical lens to explore the difficulties encountered and support needed in their caring role. Qualitative data were drawn from an online survey conducted within an EU Horizon 2020 funded project. An inductive thematic analysis was carried out, and the findings were critically interpreted within the conceptual framework of the CSA model. The analysis highlighted three categories of difficulties: material, communication and emotional/psychological. The most common material difficulty was the physical strain associated with moving “uncooperative” disabled older adults. The types of support needed concerned both emotional and material support. The study provides a deeper understanding of the under-studied experiences of AYCs of GrPs. Based on these findings, policies and support measures targeted at AYCs of GrPs should include early needs detection, emotional support and training on intergenerational caring in order to mitigate the stress drivers. Moreover, the study advances the conceptualisation of the CSA model by considering the above-mentioned aspects related to intergenerational caregiving

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  • 42. 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.))
  • 43.
    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.

  • 44.
    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.

  • 45.
    Efthymiou, Areti
    et al.
    Eurocarers, Belgium.
    Poli, Arianna
    National Institute of Health and Science on Ageing (INRCA), Italy.
    Döhner, Hanneli
    Eurocarers, Belgium.
    Hanson, Elizabeth
    Eurocarers, Belgium.
    Barbabella, Francesco
    National Institute of Health and Science on Ageing (INRCA), Italy.
    Goodwin, Frank
    Eurocarers, Belgium.
    Lamura, Giovanni
    National Institute of Health and Science on Ageing (INRCA), Italy.
    The role of Eurocarers in promoting web-based support services for informal carers in Europe2015In: Irish Ageing Studies Review, ISSN 1649-9972, Vol. 6, no 1, p. 88-89Article in journal (Refereed)
    Abstract [en]

    Background: Eurocarers is an European non-profit association representing informal carers. It was officially established in 2006 and includes user organisations, research institutions and individual members addressing and working on the issue of informal care. Eurocarers participates in the work package 3 (WP3) of the INNOVAGE project, aiming to develop and disseminate a multilingual web platform for informal carers in 27 Member States of the European Union (EU).

    Methods: A wide networking activity was carried out in 2013-2014 for identifying and involving at least one user organisation in each country of the EU-27, which could take over responsibility of single national versions of the platform. 29 carers organisations were involved in implementation, as well as in developing country-based contents for the information resources area.

    Results: Information resource area will be implemented in the EU-27 in all official languages and updated progressively by organisations. Each organisation will implement a set of interactive services, depending on country peculiarities and available resources. A further dissemination phase will follow, based on a multilayered approach: one EU event will take place in 2015, followed by national events and other local activities.

    Conclusions: A fundamental role in the development and dissemination of web-based support services for carers is played by the activation of a strong and comprehensive network of organisations. Characteristics of the internet have the potential to strengthen collaboration between stakeholders and converge efforts for improving level of support services in countries with less cultural, social and policy recognition of carers’ role in the society.

  • 46.
    Efthymiou, Areti
    et al.
    Athens Association of Alzheimer's Disease and Related Disorders, Greece.
    Vlachogiann, Aggeliki
    Athens Association of Alzheimer's Disease and Related Disorders, Greece.
    Nika, Aspasia
    Athens Association of Alzheimer's Disease and Related Disorders, Greece.
    Barbabella, Francesco
    National Institute of Health and Science on Ageing (INRCA), Italy.
    Poli, Arianna
    National Institute of Health and Science on Ageing (INRCA), Italy.
    Salzmann, Benjamin
    wir pflegen, Germany.
    Andréasson, Frida
    Swedish Family Care Competence Centre (NKA).
    Hanson, Elizabeth
    Swedish Family Care Competence Centre (NKA).
    Doehner, Hanneli
    Eurocarers, Belgium.
    Lamura, Giovanni
    National Institute of Health and Science on Ageing (INRCA), Italy.
    Web services for Greek informal carers2015In: Hellenic Journal of Nuclear Medicine, ISSN 1790-5427, Vol. 18, p. 51-53Article in journal (Refereed)
    Abstract [en]

    The INNOVAGE project is dedicated to developing, surveying and cataloguing, social innovations for older people. Four new innovations will be developed and tested: a) social innovation for user – driven housing of older people, b) a web-platform for informal carers of older people, c) social intervention for improving obesity in old age, d) social innovation for activation of people with dementia living in long term care institutions. Italian National Institute of Health and Science on Aging (INRCA) (www.inrca.it) and Eurocarers Association (www.eurocarers.org) are the partners responsible for developing and implementing a multilingual web platform for informal carers in 27 EU Member States. An innovAge carers associations network has been established based on the Eurocarers organisations network. National organizations, members of INNOVAGE network, are responsible for developing national information and disseminating the web platform at national level. Athens Association of Alzheimer‘s Disease and Related Disorders is an official member of the INNOVAGE network and participates in the development of the Greek version of the INNOVAGE web platform. The platform will provide to end-users services such as: national information on care and support services, legal and financial information, information about the most common impairments of older people, strategies and information about coping with caregiving. Interactive services, social network, forum, chat, video conferencing tools will be also available. The Greek version of the web platform will be available in May 2015.

  • 47.
    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.

  • 48.
    Ericsson, Iréne
    et al.
    Jönköping University.
    Persson, Marie
    Jönköping University.
    Hanson, Elizabeth
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. Swedish Family Care Competence Centre (NKA).
    Anhöriga till äldre personer med psykisk ohälsa2016Report (Other academic)
    Abstract [sv]

    I denna kunskapsöversikt är vuxna anhöriga till en äldre person med psykisk ohälsa fokus. Eftersom psykisk ohälsa hos äldre skiljer sig från psykisk ohälsa hos yngre vuxna behöver situationen för dessa anhöriga beskrivas och deras specifika behov och stöd lyftas fram. Kunskapsöversikten inleds med en bakgrund till psykisk ohälsa hos äldre. Därefter följer en kort beskrivning av vård och omsorg för äldre med psykisk ohälsa, vilket är ett komplext område med många olika vårdaktörer. Slutligen presenteras forskning om anhöriga till vuxna med psykisk ohälsa och anhöriga till äldre.

  • 49.
    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)
    Download full text (pdf)
    FULLTEXT01
  • 50.
    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.

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