| 1. |
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- 2019
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Tidskriftsartikel (refereegranskat)
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| 2. |
- Aldman, Linnéa, et al.
(författare)
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3: Sweden
- 2024. - 1
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Ingår i: Combining Work and Care. - Bristol : Policy Press. - 9781447365709 ; , s. 50-78
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Bokkapitel (övrigt vetenskapligt/konstnärligt)abstract
- Informal carers are an integral part of care provision in Sweden, with approximately one in five people providing regular help to a family member or friend. Indeed, carers provide most of the care for people with health and/or care needs living at home. However, they are also relatively neglected in policy terms, with large variation in the type and extent of support offered across the country. This chapter outlines the carer leave policies available, highlighting that the current policy landscape does not sufficiently address the needs and preferences of working carers. Nevertheless, there is a growing political will to recognise the situation of carers in Sweden, marked by the launch of the first national carers strategy by the previous government in April 2022.
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| 3. |
- Allemann, Hanna, et al.
(författare)
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The co-design of an online support programme with and for informal carers of people with heart failure : A methodological paper
- 2023
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Ingår i: Journal of Clinical Nursing. - : John Wiley & Sons. - 0962-1067 .- 1365-2702. ; 32:19-20, s. 7589-7604
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 4. |
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| 5. |
- Andersson, Gunnel, et al.
(författare)
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Livskvalitet hos anhöriga som vårdar en äldre närstående med inkontinens : En svensk delrapport av ett EU-projekt initierad av SCA och Eurocarers
- 2012
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Rapport (övrigt vetenskapligt/konstnärligt)abstract
- 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.
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| 6. |
- Andersson, Stefan
(författare)
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Information and Communication Technology : mediated support for working carers of older people
- 2017
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Despite a growing awareness of the importance of support for carers who combine paid work with care of an older relative, so called ‘working carers’, there remains a lack of empirical knowledge about more innovative ways to support this largest group of carers of older people. Information and Communication Technologies (ICTs) are becoming more readily available. As a result, ICTs have made it feasible to offer working carers more targeted forms of support.This thesis aimed to gain an understanding about support for working carers of older people via the use of ICT.An integrative literature review was conducted to explore and evaluate the current evidence base concerning the use of ICT-mediated support for working carers (I). Content analysis of qualitative data was used to describe nursing and support staff’s experiences of using web-based ICTs for information, e-learning and support of working carers (II). Content analysis was also used to describe working carers’ experiences of having access to a web-based family care support network provided by the municipality (III). Descriptive statistical methods were used to analyse survey data which focused on the types of support received and how they were valued by working carers, with a focus on ICT support (IV).Findings highlighted that ICT mediated support provided working carers with the means to manage their caring situation, via the provision of information, e-learning and education, in addition to practical assistance and emotional and/or physical respite from caregiving. In this way, working carers felt empowered in their caring situation by feeling more competent and prepared in their caring role and by strengthening their self-efficacy and positive self-appraisal of their situation. Carers were provided channels to share their frustrations and burdens via forums for emotional and social support between working carers, caring professionals, and other peer carers. This led to working carers feeling less burdened by their caregiving role and it helped promote their wellbeing. Further, carers were helped in some instances to balance work and care. As a result caregiving activities conflicting with work obligations were then lessened.In contrast, when ICT mediated support was neither provided in a timely fashion or in accordance with individual carers’ needs and preferences, then it was perceived by them to be unimportant. Cross-sectional data revealed that take-up of support services was low suggesting that unmet support needs may be inflated by work-care conflicts. For carers with lower digital skills, the additional time needed to learn to use ICTs was a further barrier.Overall, ICT mediated support acted as a complementary form of support for working carers. Measures to overcome dis-empowering aspects of this innovative from of support are needed to avoid working carers’ deprioritizing their own support needs and also to avoid possible digital exclusion from the current information society.
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| 7. |
- Andersson, Stefan, et al.
(författare)
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Information and communication technology-mediated support for working carers of older family members : an integrative literature review
- 2017
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Ingår i: International Journal of Care and Caring. - : Policy Press. - 2397-8821 .- 2397-883X. ; 1:2, s. 247-273
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Forskningsöversikt (refereegranskat)abstract
- 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.
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| 8. |
- Andersson, Stefan, et al.
(författare)
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Teknikstöd för yrkesverksamma anhöriga : resultat från utvärdering av tre projekt inom programmet Teknik för äldre II
- 2012
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Rapport (övrigt vetenskapligt/konstnärligt)abstract
- 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
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| 9. |
- Andersson, Stefan, et al.
(författare)
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The experiences of working carers of older people regarding access to a web-based family care support network offered by a municipality
- 2017
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Ingår i: Scandinavian Journal of Caring Sciences. - : Wiley-Blackwell. - 0283-9318 .- 1471-6712. ; 31:3, s. 487-496
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 10. |
- Andersson, Stefan, et al.
(författare)
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The use of information and communication technologies to support working carers of older people : a qualitative secondary analysis
- 2016
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Ingår i: International Journal of Older People Nursing. - : John Wiley & Sons. - 1748-3735 .- 1748-3743. ; 11:1, s. 32-43
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 11. |
- Andersson, Stefan, et al.
(författare)
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Valued and received forms of support among Swedish working carers of older people : a descriptive study with focus on ICT-mediated support
- 2019
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Ingår i: Technology and Disability. - : IOS Press. - 1055-4181 .- 1878-643X. ; 31:4, s. 189-202
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Tidskriftsartikel (refereegranskat)abstract
- 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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| 12. |
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| 13. |
- Andréasson, Frida, et al.
(författare)
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Developing a carer identity and negotiating everyday life through social networking sites : An explorative study on identity constructions in an online Swedish carer community
- 2018
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Ingår i: Ageing & Society. - : Cambridge University Press. - 0144-686X .- 1469-1779. ; 38:11, s. 2304-2324
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 14. |
- Andréasson, Frida, et al.
(författare)
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Developing a carer identity and negotiating everyday life through social networking sites
- 2017
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Ingår i: Innovation in Aging. - : Oxford University Press. - 2399-5300. ; 1:Suppl_1, s. 465-466
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Tidskriftsartikel (övrigt vetenskapligt/konstnärligt)abstract
- 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.
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| 15. |
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| 16. |
- Andréasson, Frida
(författare)
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Doing informal care : Identity, couplehood, social health and information and communication technologies in older people’s everyday lives
- 2021
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- The aim of the thesis has been a) to analyse how informal care influences the identity of carers and care recipients, their sense of couplehood and social health, and b) to explore the use of Information and Communication Technology (ICT) in the context of informal care and the everyday lives of older people. Study I focused on how older carers conceptualised their identity as carers on a Swedish online social forum, using a netnographic methodology. The findings indicated a change in self-perception as the carer role was acquired. Carers’ capacities were filtered through the needs of the care recipient, making their carer identities into invisible selves. The findings revealed that online communication had the potential to create a virtual space of social recognition. Study II aimed to reflect on carers’ experiences of participation in a co-design process consisting of user group sessions with carers and researchers. The goal was to develop a web-based support programme for carers. The findings emphasised a need to consider carers’ lifeworlds and to develop flexible human-centred design methodologies, that are able to balance carers’ needs and ideas with proposed research outcomes. Studies III and IV utilised an ethnographic methodology. In study III, the notion of couplehood in informal care was analysed. The findings showed that in the process of becoming a carer and a care recipient previous (often gendered) responsibilities were re- negotiated and new practicalities emerged. Although these changes were understood as a natural part of family life, they nevertheless led to changes in the (power) balance between spouses, expressed in terms of a professionalised relationship and a sense of social isolation. ICT was used as a means to get a respite from caring and uphold a social connection with others. In study IV, the social implications and consequences of spousal informal care and carers and care recipients’ experiences of illness and the ill body was explored. The findings showed that the participants experienced barriers to living life as before. Thoughts about or the presence of ill and “leaking” bodies thus lead to “self-chosen” social isolation or social distancing by others. The thesis highlights that informal care needs to be understood as an identity forming practice, having a significant impact on involved parties’ sense of couplehood, their social health and that ICT can contribute to ease carers’ and care recipients’ daily life.
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| 17. |
- Andréasson, Frida, et al.
(författare)
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Lifeworld in co-designing with informal carers
- 2019
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Ingår i: Journal of Enabling Technologies. - : Emerald Group Publishing Limited. - 2398-6263 .- 2398-6271. ; 13:1, s. 29-39
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 18. |
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| 19. |
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| 20. |
- Andréasson, Frida, et al.
(författare)
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‘The balance in our relationship has changed’ : everyday family living, couplehood and digital spaces in informal spousal care
- 2023
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Ingår i: Journal of Family Studies. - : Taylor & Francis. - 1322-9400 .- 1839-3543. ; 29:2, s. 719-737
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 21. |
- Andréasson, Frida, et al.
(författare)
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The INNOVAGE-Eurocarers platform and current ICT-based services for informal carers of older people in Sweden
- 2015
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Ingår i: Irish Ageing Studies Review. - 1649-9972. ; 6:1, s. 88-88
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 22. |
- Andréasson, Frida, et al.
(författare)
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The use of on-line social network and services by family carers with high digital skills : The case of the Swedish sample
- 2016
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Konferensbidrag (refereegranskat)abstract
- 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.
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| 23. |
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Att se barn som anhöriga - om beroende i relationer, interventioner och omsorgsansvar : Antologi
- 2015
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Samlingsverk (redaktörskap) (övrigt vetenskapligt/konstnärligt)abstract
- Barn föds anhöriga och växer upp som anhöriga till föräldrar och syskon och andra viktiga personer i familjen. I dessa relationer har minderåriga barn sin trygghet och tillitsbas att bygga sitt liv på. Omvänt får de svårigheter som drabbar föräldrar och syskon konsekvenser också för barn. Vilka är dessa konsekvenser och hur kan vi förstå barns anhörigskap? Vilka roller kan barnet ha i sin familj? När behöver barn och föräldrar stöd och hur?
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| 24. |
- Barbabella, Francesco, 1984-, et al.
(författare)
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A multilingual web platform supporting informal carers in 27 EU member states
- 2015
-
Ingår i: Broader, bigger, better: AAL solutions for Europe. Proceedings of the 6<sup>th</sup> AAL Forum 2014. - Bucharest : UEFISCDI. - 9789730201192 ; , s. 169-172
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Konferensbidrag (refereegranskat)abstract
- 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.
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| 25. |
- Barbabella, Francesco, et al.
(författare)
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A web-based psychosocial intervention for family caregivers of older people : results from a mixed-methods study in three European countries
- 2016
-
Ingår i: JMIR Research Protocols. - : JMIR Publications. - 1929-0748. ; 5:4, s. 1-16
-
Tidskriftsartikel (refereegranskat)abstract
- 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).
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| 26. |
- Barbabella, Francesco, et al.
(författare)
-
Deliverable 3.6: Final report on the “Methodological Framework”
- 2011
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Rapport (övrigt vetenskapligt/konstnärligt)abstract
- 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.
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| 27. |
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| 28. |
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| 29. |
- Barbabella, Francesco, Dr. 1984-, et al.
(författare)
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Recruitment of Adolescent Young Carers to a Psychosocial Support Intervention Study in Six European Countries : Lessons Learned from the ME-WE Project
- 2023
-
Ingår i: International Journal of Environmental Research and Public Health. - : MDPI. - 1661-7827 .- 1660-4601. ; 20:6
-
Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 30. |
- Barbabella, Francesco, 1984-, et al.
(författare)
-
Usage and Usability of a Web-based Program for Family Caregivers of Older People in Three European Countries : A Mixed-Methods Evaluation
- 2018
-
Ingår i: Computers, Informatics, Nursing. - : Lippincott Williams & Wilkins. - 1538-2931 .- 1538-9774. ; 36:5, s. 232-241
-
Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 31. |
- Berghamre Heinz, Agneta, et al.
(författare)
-
Barn som anhöriga : Alla barn ska få möjlighet till hälsa och personlig utveckling
- 2019
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Rapport (övrigt vetenskapligt/konstnärligt)abstract
- 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.
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| 32. |
- Bergman, Ann-Sofie, 1963-, et al.
(författare)
-
Barn som är anhöriga när en förälder avlider : en kunskapsöversikt om effekt av metoder för stöd till barn
- 2014
-
Rapport (övrigt vetenskapligt/konstnärligt)abstract
- 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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| 33. |
- Bergman, Ann-Sofie, 1963-, et al.
(författare)
-
Bereavement for children when a parent dies
- 2015
-
Ingår i: Presented at the 6th International Carers Conference - Care and caring: future proofing the new demographics, Gothenburg, Sweden, September 3-6, 2015.
-
Konferensbidrag (refereegranskat)
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| 34. |
|
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| 35. |
- Bergman, Ann-Sofie, 1963-, et al.
(författare)
-
Effekter av anknytningsbaserade interventioner för yngre barn och deras omvårdnadspersoner : En kunskapsöversikt
- 2016
-
Rapport (övrigt vetenskapligt/konstnärligt)abstract
- 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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| 36. |
- Bergman, Ann-Sofie, 1963-, et al.
(författare)
-
Stöd till barn när en förälder avlider
- 2015
-
Ingår i: Att se barn som anhöriga - om beroende i relationer, interventioner och omsorgsansvar. - Kalmar/Växjö : Nationellt kompetenscentrum anhöriga, Linnéuniversitetet. - 9789187731266 ; , s. 201-227
-
Bokkapitel (övrigt vetenskapligt/konstnärligt)abstract
- 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.
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| 37. |
- Bergman, Ann-Sofie, 1963-, et al.
(författare)
-
When a parent dies : a systematic review of the effects of support programs for parentally bereaved children and their caregivers
- 2017
-
Ingår i: BMC Palliative Care. - : BioMed Central. - 1472-684X. ; 16, s. 1-15
-
Tidskriftsartikel (refereegranskat)abstract
- 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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| 38. |
- Bergström, Aileen L., et al.
(författare)
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An integrative review of information and communication technology based support interventions for carers of home dwelling older people
- 2017
-
Ingår i: Technology and Disability. - : IOS Press. - 1055-4181 .- 1878-643X. ; 29:1-2, s. 1-14
-
Tidskriftsartikel (refereegranskat)abstract
- 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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| 39. |
- Billings, Liana K., et al.
(författare)
-
The Influence of Rare Genetic Variation in SLC30A8 on Diabetes Incidence and beta-Cell Function
- 2014
-
Ingår i: Journal of Clinical Endocrinology and Metabolism. - : The Endocrine Society. - 1945-7197 .- 0021-972X. ; 99:5, s. 926-930
-
Tidskriftsartikel (refereegranskat)abstract
- Context/Objective: The variant rs13266634 in SLC30A8, encoding a beta-cell-specific zinc transporter, is associated with type 2 diabetes. We aimed to identify other variants in SLC30A8 that increase diabetes risk and impair beta-cell function, and test whether zinc intake modifies this risk. Design/Outcome: We sequenced exons in SLC30A8 in 380 Diabetes Prevention Program (DPP) participants and identified 44 novel variants, which were genotyped in 3445 DPP participants and tested for association with diabetes incidence and measures of insulin secretion and processing. We examined individual common variants and used gene burden tests to test 39 rare variants in aggregate. Results: We detected a near-nominal association between a rare-variant genotype risk score and diabetes risk. Five common variants were associated with the oral disposition index. Various methods aggregating rare variants demonstrated associations with changes in oral disposition index and insulinogenic index during year 1 of follow-up. We did not find a clear interaction of zinc intake with genotype on diabetes incidence. Conclusions: Individual common and an aggregate of rare genetic variation in SLC30A8 are associated with measures of beta-cell function in the DPP. Exploring rare variation may complement ongoing efforts to uncover the genetic influences that underlie complex diseases.
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| 40. |
- Boustedt Hedvall, Maria, et al.
(författare)
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A ten-year national strategic collaboration to support children-as-next-of-kin in Sweden - What have we done so far?
- 2021
-
Ingår i: Presented at the 3rd International Young Carers conference, Online, May 3-6, 2021.
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Konferensbidrag (populärvet., debatt m.m.)abstract
- 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.
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| 41. |
- Brolin, Rosita, 1958-, et al.
(författare)
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Adolescent Young Carers Who Provide Care to Siblings
- 2024
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Ingår i: Healthcare. - : MDPI. - 2227-9032. ; 12:3
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Tidskriftsartikel (refereegranskat)abstract
- 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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| 42. |
- Brolin, Rosita, 1958-, et al.
(författare)
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Adolescent Young Carers Who Provide Help and Support to Friends
- 2023
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Ingår i: Healthcare. - : MDPI. - 2227-9032. ; 11:21
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Tidskriftsartikel (refereegranskat)abstract
- 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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| 43. |
- Carlsund, Åsa, 1969-, et al.
(författare)
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Support for children as next of kin and systematic follow up : group leaders’ and managers’ perspectives within non-profit organizations in Sweden
- 2017
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Ingår i: Open Family Studies Journal. - : Bentham Open. - 1874-9224. ; 9, s. 49-59
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Tidskriftsartikel (refereegranskat)abstract
- 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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| 44. |
- Casu, Giulia, et al.
(författare)
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Promoting mental health and well‐being among adolescent young carers in Europe : a randomized controlled trial protocol
- 2021
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Ingår i: International Journal of Environmental Research and Public Health. - : MDPI. - 1661-7827 .- 1660-4601. ; 18:4, s. 1-23
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Tidskriftsartikel (refereegranskat)abstract
- 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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| 45. |
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| 46. |
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| 47. |
- Clarke, Amanda, et al.
(författare)
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Seeing the person behind the patient: enhancing the care of older people using a biographical approach
- 2003
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Ingår i: Journal of Clinical Nursing. - : John Wiley & Sons. - 0962-1067 .- 1365-2702. ; 12:5, s. 697-706
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Tidskriftsartikel (refereegranskat)abstract
- • 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.
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| 48. |
- Conde, Lucia, et al.
(författare)
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Genome-wide association study of follicular lymphoma identifies a risk locus at 6p21.32
- 2010
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Ingår i: Nature Genetics. - : Springer Science and Business Media LLC. - 1061-4036 .- 1546-1718. ; 42:8, s. 661-664
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Tidskriftsartikel (refereegranskat)abstract
- To identify susceptibility loci for non-Hodgkin lymphoma subtypes, we conducted a three-stage genome-wide association study. We identified two variants associated with follicular lymphoma at 6p21.32 (rs10484561, combined P = 1.12 x 10(-29) and rs7755224, combined P = 2.00 x 10(-19); r(2) = 1.0), supporting the idea that major histocompatibility complex genetic variation influences follicular lymphoma susceptibility. We also found confirmatory evidence of a previously reported association between chronic lymphocytic leukemia/small lymphocytic lymphoma and rs735665 (combined P = 4.24 x 10(-9)).
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| 49. |
- D’Amen, Barbara, et al.
(författare)
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Italian Adolescent Young Caregivers of Grandparents : Difficulties Experienced and Support Needed in Intergenerational Caregiving—Qualitative Findings from a European Union Funded Project
- 2022
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Ingår i: International Journal of Environmental Research and Public Health. - : MDPI. - 1661-7827 .- 1660-4601. ; 19:1
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Tidskriftsartikel (refereegranskat)abstract
- 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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| 50. |
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