| 1. |
- 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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| 2. |
- Ekman, Björn, et al.
(författare)
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Cost analysis of informal care : estimates from a national cross-sectional survey in Sweden
- 2021
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Ingår i: BMC Health Services Research. - : BioMed Central. - 1472-6963. ; 21:1
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Tidskriftsartikel (refereegranskat)abstract
- BackgroundOver 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.ObjectiveThis 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.MethodsAdopting 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.ResultsThe 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.ConclusionsFindings 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.
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| 3. |
- Falk Johansson, Marcus, et al.
(författare)
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A comparison of spouse and non-spouse carers of people with dementia : a descriptive analysis of Swedish national survey data
- 2021
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Ingår i: BMC Geriatrics. - : BioMed Central. - 1471-2318 .- 1471-2318. ; 21:1
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Tidskriftsartikel (refereegranskat)abstract
- BackgroundBeing an informal carer of a person with dementia (PwD) can have a negative effect on the carer's health and quality of life, and spouse carers have been found to be especially vulnerable. Yet relatively little is known about the care provided and support received by spouse carers. This study compares spouse carers to other informal carers of PwDs regarding their care provision, the support received and the psychosocial impact of care.MethodsThe study was a cross-sectional questionnaire-based survey of a stratified random sample of the Swedish population aged 18 or over. The questionnaire explored how much care the respondent provided, the support received, and the psychosocial impact of providing care. Of 30,009 people sampled, 11,168 (37.7%) responded, of whom 330 (2.95%) were informal carers of a PwD.ResultsIn comparison to non-spouse carers, spouse carers provided more care more frequently, did so with less support from family or the local authority, while more frequently experiencing negative impacts on their social life and psychological and physical health. Spouse carers also received more carer support and more frequently experienced a closeness in their relationship with the care-recipient.ConclusionsSpouse carers of PwD differed from non-spouse carers on virtually all aspects of their care situation. Policy and practice must be more sensitive to how the carer-care-recipient relationship shapes the experience of care, so that support is based on an understanding of the individual carer's actual needs and preferences rather than on preconceptions drawn from a generalised support model.
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| 4. |
- Vicente, Joana, et al.
(författare)
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Informal care provision among male and female working carers : Findings from a Swedish national survey
- 2022
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Ingår i: PLOS ONE. - : Public Library of Science. - 1932-6203. ; 17:3
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Tidskriftsartikel (refereegranskat)abstract
- IntroductionInformal carers in paid employment–working carers (WKCs)—have complex support needs. However, little is known about WKCs’ pattern of informal care provision, the support they receive, the impact providing care has on their employment, and how these vary between male and female WKCs. This study describes the pattern of informal care provision and received support among Swedish WKCs.Research method/DesignThe study was a cross-sectional questionnaire-based survey of a stratified random sample of the Swedish population aged 18 or over. The questionnaire addressed the type and extent of informal care provided, support received and the impact of care provision on employment. Of the 30,009 people who received the questionnaire, 11,168 (37.3%) responded, providing an analytic sample of 818 (7.32% of respondents) employed or self-employed informal carers.FindingsA typical Swedish WKC was a middle-aged female, providing weekly or daily care to a non-cohabitant parent, who experiences care as sometimes demanding and receives no formal support as a carer. Female WKCs were more likely than males to care alone and with higher intensity, to report a need for help in meeting their care-recipient’s needs, and to experience care as demanding. Approximately 17% of WKCs reported their employment had been affected due to caring, 40% their ability to work, and 31% their career development opportunities. Female WKCs’ ability to work was affected more than males’, and they were more commonly prevented from applying for work.ConclusionSwedish female WKCs compared to males provide more hours of informal care, across more care domains, more often alone. This places them in a challenging situation when combining paid work and care. Greater recognition of the challenges faced by WKCs is required in Sweden and other countries, as are policies to reduce gender inequalities in informal care provision in this group.
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| 5. |
- 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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| 6. |
- 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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| 7. |
- 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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| 8. |
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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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| 9. |
- 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
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Ingår i: International Journal of Environmental Research and Public Health. - : MDPI. - 1661-7827 .- 1660-4601. ; 20:6
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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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| 10. |
- Berghamre Heinz, Agneta, et al.
(författare)
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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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