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.

The general discourse in health and social care policy purports digital technology as necessary to meet growing demands for long-term care and health care as a result of an ageing population. This needs critical investigation since public policy influences people's health and wellbeing. This study aims to interrogate critically what we call the ‘digital technology solution’ discourse in local Swedish health and social care policies. The main concern of our analysis is the discursive constructions of older people and their informal carers and how the concept of health is constructed. A discourse analysis was conducted of 61 local policy documents using the ‘What's the Problem Represented to Be’ method. Our analysis revealed that so-called ‘e-health strategies’ were rarely concerned with health. Health was often referred to as an activity and seen as a means to achieve independence among older people. The norm advocated independence, with the responsibility placed upon the older person, supported by digital technology. Informal carers were constructed as a resource within an older person's environment and largely taken for granted. We argue that the digital solution discourse ignores older people's agency and capacities as contributors to society, not least with regards to being providers of informal care.

During the COVID-19 outbreak, the care services interruption/delay resulted in increased amount of care for informal caregivers of older people with long-term care needs. This study aimed at understanding how the Pandemic affected physical health, mental well-being and quality of life of older people' informal caregivers of different ages and to what extent starting caregiving affected such life realms among new caregivers. An online survey was carried out in Winter 2020-2021 targeted to informal caregivers living in 16 European countries. A sub-sample of 848 adult (aged 18-64) was compared to another of 542 older (over 65) informal caregivers. People who started caring during the Pandemic were also identified and the impact of the Pandemic on the three life realms of this group were analysed separately by gender and age. The differences between the two groups of adult and older caregivers were estimated using logistic regression, adjusted for potential confounders. Analyses were repeated after propensity score matching. During the second Pandemic wave hitting Europe in Winter 2020-21, regardless of age, being female entailed a worsening in physical health, mental well-being and quality of life, in line with previous research Also new caregivers were mostly females and their physical health and quality of life were worsened by caregiving. Gender-specific work-life balance policies and measures are needed to support female working caregivers. More attention should be paid to older female caregivers through scheduled physical and mental health screenings and home visits. Future studies on the topic in a gender and intergenerational perspective are encouraged.

Abstract: Aims and objectives: The study aim was to explore the use of an Intensive Care Unit (ICU) diary within four differentICUs units in Sweden and thereby contribute to practice guidelines regarding the structure,content and use of an ICU diary.

Background: ICU diaries are used to aid psychological recovery among critical care patients, but differencesremain in diary writing both within and across countries. Few studies have focused onthe combined views and experiences of ICU patients, family members and nursing staffabout the use of ICU diaries.

Design: An instrumental multiple case study design was employed.

Methods: Three focus groups interviews were carried out with 8 former patients and their family members(n = 5) from the research settings. Individual interviews were carried out with 2 patients,a family member and a nurse respectively. Observations, field notes, documentary analysisand conversations with nursing staff were also conducted. Consolidated criteria for reportingqualitative research (COREQ) was followed.

Results: The qualitative findings firstly consisted of a matrix and descriptive text of the four ICU contextsand current practices. This highlighted that there were similarities regarding the aimsand objectives of the diaries. However, differences existed across the case study sitesabout how the ICU diary was developed and implemented. Namely, the use of photographsand when to commence a diary. Second, a thematic analysis of the qualitative data regardingpatients’ and family members’ use of the ICU diary, resulted in four themes: i) the diary was used to take in and fully understand the situation;ii) the diary was an opportunity to assimilate warm, personalised and human care; iii) the diary was used to manage existential issues; and iv) the diary was a tool in daily activities.

Conclusions: Analysis of the instrumental case study data led to the identification of core areas for inclusionin ICU diary practice guidelines.

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.

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.

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.

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.

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.