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Brolin, R., Hanson, E., Magnusson, L., Lewis, F., Parkhouse, T., Hlebec, V., . . . Becker, S. (2024). Adolescent Young Carers Who Provide Care to Siblings. Healthcare, 12(3), Article ID 316.
Open this publication in new window or tab >>Adolescent Young Carers Who Provide Care to Siblings
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2024 (English)In: Healthcare, E-ISSN 2227-9032, Vol. 12, no 3, article id 316Article in journal (Refereed) Published
Abstract [en]

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

Place, publisher, year, edition, pages
MDPI, 2024
Keywords
sibling carer, young carer, school outcomes, mental health, well-being, quality of life, support
National Category
Nursing
Research subject
Health and Caring Sciences, Nursing
Identifiers
urn:nbn:se:lnu:diva-127893 (URN)10.3390/healthcare12030316 (DOI)001159968700001 ()38338201 (PubMedID)2-s2.0-85184701930 (Scopus ID)
Available from: 2024-02-20 Created: 2024-02-20 Last updated: 2024-02-22Bibliographically approved
Brolin, R., Hanson, E., Magnusson, L., Lewis, F., Parkhouse, T., Hlebec, V., . . . Becker, S. (2023). Adolescent Young Carers Who Provide Help and Support to Friends. Healthcare, 11(21), Article ID 2876.
Open this publication in new window or tab >>Adolescent Young Carers Who Provide Help and Support to Friends
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2023 (English)In: Healthcare, E-ISSN 2227-9032, Vol. 11, no 21, article id 2876Article in journal (Refereed) Published
Abstract [en]

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

Place, publisher, year, edition, pages
MDPI, 2023
Keywords
young friend carer, young carer, school outcomes, health, well-being
National Category
Nursing
Research subject
Health and Caring Sciences
Identifiers
urn:nbn:se:lnu:diva-125429 (URN)10.3390/healthcare11212876 (DOI)001099419100001 ()2-s2.0-85176473396 (Scopus ID)
Available from: 2023-11-01 Created: 2023-11-01 Last updated: 2023-12-08Bibliographically approved
Johansson, P., Brolin, R., Magnusson, L. & Hanson, E. (2023). Barn som anhöriga och unga omsorgsgivare. In: Gunilla Klingberg, Ulrika Hallberg (Ed.), Stora anhörigboken: (pp. 67-105). Lund: Studentlitteratur AB
Open this publication in new window or tab >>Barn som anhöriga och unga omsorgsgivare
2023 (Swedish)In: Stora anhörigboken / [ed] Gunilla Klingberg, Ulrika Hallberg, Lund: Studentlitteratur AB, 2023, p. 67-105Chapter in book (Other (popular science, discussion, etc.))
Place, publisher, year, edition, pages
Lund: Studentlitteratur AB, 2023
Keywords
barn som anhöriga, unga omsorgsgivare, barn, anhöriga, livsvillkor, ohälsa
National Category
Nursing
Research subject
Health and Caring Sciences
Identifiers
urn:nbn:se:lnu:diva-125345 (URN)9789144156781 (ISBN)
Available from: 2023-10-28 Created: 2023-10-28 Last updated: 2023-11-24Bibliographically approved
Hanson, E. (2023). Caring for the Informal Carer: Coping in Caregiving. In: Andreas Charalambous (Ed.), Informal Caregivers: From Hidden Heroes to Integral Part of Care (pp. 81-95). Springer
Open this publication in new window or tab >>Caring for the Informal Carer: Coping in Caregiving
2023 (English)In: Informal Caregivers: From Hidden Heroes to Integral Part of Care / [ed] Andreas Charalambous, Springer, 2023, p. 81-95Chapter in book (Other academic)
Abstract [en]

Informal carers are not always routinely recognized or supported in their caring role by health and social care practitioners, resulting in existing carer support often being offered much later on, at a time of crisis, or not at all. Carers tend not to see themselves as carers, but rather view their caring activities as a natural extension of their relationship with the person they care for. As a result, carers do not always actively seek support with their caring situation early on. Many carers put the needs of the person they are caring for first rather than their own. This chapter explains how practitioners and service providers can help care for the carer. A range of strategies are highlighted, which can help support and empower those carers who wish to care to manage their individual caring situation, while maintaining their own health and well-being and pursuing their life goals. How to recognize and support a person who may not wish to take on board a caring role, and/or a carer who no longer wishes to continue in their caring role is also featured. The chapter concludes with emphasizing the importance of embedding coping strategies within an integrated framework of support for carers.

Place, publisher, year, edition, pages
Springer, 2023
Keywords
Informal carers, Informal caring, Carer health, Carer well-being, Carers assessment, Carers outcomes
National Category
Nursing
Research subject
Health and Caring Sciences, Nursing
Identifiers
urn:nbn:se:lnu:diva-123873 (URN)10.1007/978-3-031-16745-4_5 (DOI)2-s2.0-85161185684 (Scopus ID)9783031167454 (ISBN)9783031167447 (ISBN)
Available from: 2023-08-24 Created: 2023-08-24 Last updated: 2023-09-28Bibliographically approved
Hanson, E., Lewis, F., Barbabella, F., Hoefman, R., Casu, G., Boccaletti, L., . . . Magnusson, L. (2023). Ethical Considerations When Conducting Pan-European Research with and for Adolescent Young Carers. Ethics and social welfare, 17(2), 125-158
Open this publication in new window or tab >>Ethical Considerations When Conducting Pan-European Research with and for Adolescent Young Carers
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2023 (English)In: Ethics and social welfare, ISSN 1749-6535, E-ISSN 1749-6543, Vol. 17, no 2, p. 125-158Article in journal (Refereed) Published
Abstract [en]

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

Place, publisher, year, edition, pages
Taylor & Francis Group, 2023
Keywords
Adolescent young carers;ethical issues; European project; participatory research methods;field research
National Category
Medical Ethics
Research subject
Health and Caring Sciences
Identifiers
urn:nbn:se:lnu:diva-120638 (URN)10.1080/17496535.2023.2205654 (DOI)000982904500001 ()2-s2.0-85158112120 (Scopus ID)
Available from: 2023-05-10 Created: 2023-05-10 Last updated: 2023-09-07Bibliographically approved
Malm, C., Jönson, H., Andersson, S. & Hanson, E. (2023). Exploring the knowledge contributions of carers involved in a group process aimed at co-creating a targeted support intervention. International Journal of Care and Caring, 7(3), 479-497
Open this publication in new window or tab >>Exploring the knowledge contributions of carers involved in a group process aimed at co-creating a targeted support intervention
2023 (English)In: International Journal of Care and Caring, ISSN 2397-8821, E-ISSN 2397-883X , Vol. 7, no 3, p. 479-497Article in journal (Refereed) Published
Abstract [en]

Patient and public involvement is a way of ensuring that research and practices are more responsive to their target groups. This study, inspired by discourse psychology, explores the knowledge contributions of informal carers who participated in group meetings to co-create a support intervention. Findings highlight that carers’ knowledge is complex, including more than practical caring experiences. Acknowledging carers’ knowledge contributions and involving a heterogeneous sample of carers are key considerations for patient and public involvement in research; otherwise, there is a danger of establishing risks of injustice. Accepting the multifaceted knowledge of carers could increase the validity of research and the relevance of interventions developed.

Place, publisher, year, edition, pages
Bristol University Press, 2023
Keywords
carers, carer knowledge, discourse psychology, patient and public involvement
National Category
Nursing
Research subject
Health and Caring Sciences, Caring Science
Identifiers
urn:nbn:se:lnu:diva-119620 (URN)10.1332/239788221x16740618578816 (DOI)000972016500001 ()2-s2.0-85167419122 (Scopus ID)
Available from: 2023-03-01 Created: 2023-03-01 Last updated: 2023-11-15Bibliographically approved
Hanson, E. & Champeix, C. (2023). Informal Caregivers: The Advocacy and Policy Perspective. In: Andreas Charalambous (Ed.), Informal Caregivers: From Hidden Heroes to Integral Part of Care (pp. 173-188). Springer
Open this publication in new window or tab >>Informal Caregivers: The Advocacy and Policy Perspective
2023 (English)In: Informal Caregivers: From Hidden Heroes to Integral Part of Care / [ed] Andreas Charalambous, Springer, 2023, p. 173-188Chapter in book (Other academic)
Abstract [en]

In this chapter we explain how an advocacy and policy perspective based on solid evidence is central to the support and empowerment of informal carers globally. We begin by providing the context for understanding informal carers and an advocacy and policy perspective. We explain the central role of the carers movements in advocating with and for informal carers to work for changes and improvements in practices, policies, legislation and research. The development of carers’ associations at regional, national, European and international levels are outlined, highlighting their lobbying role for carer-friendly policies that both support and empower carers. Further, we highlight the importance of carer-friendly policies being widespread and cross-cutting across different government departments so that they not only focus on health and social care, but on all spheres of life affecting carers. The role of a cross-government plan as part of a proactive and comprehensive carers strategy that covers all dimensions of a carer’s experience is described and an example of a European Carers Strategy is provided. We subsequently highlight the key policy hooks that the carers’ movement can use to help ensure that care is on the policy agenda, starting at an international level before focusing on relevant policy hooks at European level.

Place, publisher, year, edition, pages
Springer, 2023
Keywords
Informal carers, Carers movements, Carers associations, Advocacy Policy, Carers strategy
National Category
Nursing
Research subject
Health and Caring Sciences, Nursing
Identifiers
urn:nbn:se:lnu:diva-123876 (URN)10.1007/978-3-031-16745-4_10 (DOI)2-s2.0-85161201973 (Scopus ID)9783031167454 (ISBN)9783031167447 (ISBN)
Available from: 2023-08-24 Created: 2023-08-24 Last updated: 2023-09-28Bibliographically approved
Barbabella, F., Magnusson, L., Boccaletti, L., Casu, G., Hlebec, V., Bolko, I., . . . Hanson, E. (2023). Recruitment of Adolescent Young Carers to a Psychosocial Support Intervention Study in Six European Countries: Lessons Learned from the ME-WE Project. International Journal of Environmental Research and Public Health, 20(6), Article ID 5074.
Open this publication in new window or tab >>Recruitment of Adolescent Young Carers to a Psychosocial Support Intervention Study in Six European Countries: Lessons Learned from the ME-WE Project
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2023 (English)In: International Journal of Environmental Research and Public Health, ISSN 1661-7827, E-ISSN 1660-4601, Vol. 20, no 6, article id 5074Article in journal (Refereed) Published
Abstract [en]

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

Place, publisher, year, edition, pages
MDPI, 2023
Keywords
young carers; adolescent young carers; recruitment; co-design; COVID-19; psychosocial support; cluster-randomised controlled trial; intervention study
National Category
Health Sciences
Research subject
Health and Caring Sciences
Identifiers
urn:nbn:se:lnu:diva-119739 (URN)10.3390/ijerph20065074 (DOI)2-s2.0-85151113743 (Scopus ID)
Available from: 2023-03-14 Created: 2023-03-14 Last updated: 2023-08-16Bibliographically approved
Miller, E., Seddon, D., Toms, G. & Hanson, E. (2023). Talking about what matters: a systematic search and review exploring barriers and facilitators for implementing outcome-focused conversations. International Journal of Care and Caring, 7(4), 619-636
Open this publication in new window or tab >>Talking about what matters: a systematic search and review exploring barriers and facilitators for implementing outcome-focused conversations
2023 (English)In: International Journal of Care and Caring, ISSN 2397-8821, E-ISSN 2397-883X , Vol. 7, no 4, p. 619-636Article in journal (Refereed) Published
Abstract [en]

Unpaid carers form the backbone of health and care systems. Caregiving can be rewarding but can also diminish carer well-being. Many policies recognise that outcome-focused assessments are the foundation of effective support. In practice, carers can struggle to access these, preventing the realisation of carer-oriented policy goals. This systematic search and review explored literature concerning adult carer outcome assessment, retrieving 21 eligible studies spanning work in five countries. A narrative synthesis highlighted the skilled nature of the practice involved, alongside long-standing implementation barriers. We make evidence-based recommendations for policy implementation, with potential to improve outcomes for carers, practitioners and organisations.

Place, publisher, year, edition, pages
Bristol University Press, 2023
National Category
Health Sciences
Research subject
Health and Caring Sciences
Identifiers
urn:nbn:se:lnu:diva-123848 (URN)10.1332/239788221x16890689455395 (DOI)001054465100001 ()2-s2.0-85162707895 (Scopus ID)
Available from: 2023-08-22 Created: 2023-08-22 Last updated: 2023-11-21Bibliographically approved
Leu, A., Berger, F. M., Heino, M., Nap, H. H., Untas, A., Boccaletti, L., . . . Becker, S. (2023). The 2021 cross-national and comparative classification of in-country awareness and policy responses to ‘young carers’. Journal of Youth Studies, 26(5), 619-636
Open this publication in new window or tab >>The 2021 cross-national and comparative classification of in-country awareness and policy responses to ‘young carers’
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2023 (English)In: Journal of Youth Studies, ISSN 1367-6261, E-ISSN 1469-9680, Vol. 26, no 5, p. 619-636Article in journal (Refereed) Published
Abstract [en]

Many children under the age of 18 are drawn into unpaid caring roles because they live in families where there is chronic illness, mental health problems or substance misuse, and because other alternatives are not available. Many of these children, widely referred to as ‘young carers’, provides regular and significant amounts of care, often ‘hidden’ because of the absence of awareness by professionals in the fields of education, health and social care. While there are some positive outcomes for children, published research also shows that children’s caring tasks can have negative outcomes, especially during the transition between school and further/higher education and paid work. This paper presents an overview, cross-national and comparative analysis of the different legislation, policy and service frameworks to support young carers in a number of countries. It utilises a qualitative assessment approach and a 7-point classification to understand the state of development and progress since 2017. While the legislation, policy and service frameworks differ significantly among the observed countries, an international and collaborative research network has emerged in the last five years. This plays a vital role as a driver for increasing the awareness of young carers and further national and cross-national policy developments in the future.

Place, publisher, year, edition, pages
Taylor & Francis Group, 2023
Keywords
Young carers; classification; cross-national comparison, in-country awareness; policy responses
National Category
Health Sciences
Research subject
Health and Caring Sciences
Identifiers
urn:nbn:se:lnu:diva-120641 (URN)10.1080/13676261.2022.2027899 (DOI)000750961100001 ()2-s2.0-85124120815 (Scopus ID)
Available from: 2023-05-10 Created: 2023-05-10 Last updated: 2023-08-16Bibliographically approved
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Identifiers
ORCID iD: ORCID iD iconorcid.org/0000-0001-7609-4822

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