Adolescent Young Carers Who Provide Care to Siblings.

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.

Adolescent Young Carers Who Provide Help and Support to Friends.

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.

Visibility as a Key Dimension to Better Health-Related Quality of Life and Mental Health: Results of the European Union Funded "ME-WE" Online Survey Study on Adolescent Young Carers in Switzerland.

This paper examines the health-related quality of life (HRQL) and mental health of adolescent young carers (AYCs) aged 15-17 in Switzerland, based on data collected within the Horizon 2020 project 'Psychosocial support for promoting mental health and well-being among AYCs in Europe' (ME-WE). It addresses the following questions: (1) Which characteristics of AYCs are associated with lower HRQL and with higher level of mental health problems? (2) Do AYCs who are less visible and less supported report a lower HRQL and more mental health issues than other AYCs? A total of 2343 young people in Switzerland, amongst them 240 AYCs, completed an online survey. The results show that female AYCs and AYCs with Swiss nationality more often reported having mental health issues than their male and non-Swiss counterparts. Furthermore, the findings show a significant association between receiving support for themselves and visibility from their school or employer and the HRQL. Moreover, AYCs who reported that their school or employer knew about the situation also reported fewer mental health issues. These findings can inform recommendations for policy and practice to develop measures aimed at raising the visibility of AYCs, which is the first step for planning AYC tailored support.

Recruitment of Adolescent Young Carers to a Psychosocial Support Intervention Study in Six European Countries: Lessons Learned from the ME-WE Project.

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.

Cross-national data on informal caregivers of older people with long-term care needs in the European population: time for a more coordinated and comparable approach.

To promote long-term care policies for older adults, accurate mapping of the often invisible and insufficiently recognized role of their informal caregivers is needed. This paper measures the prevalence of informal caregivers in the European population, illustrates current difficulties in gathering unequivocal information on this topic and deals with the scientific and policy implications of the problem. Using the European Health Interview Survey (EHIS), the European Quality of Life Survey (EQLS) and the Study on Health and Ageing in Europe (SHARE), the current difficulties in gathering unequivocal information on this topic are illustrated. In most countries, the share of informal caregivers varies, sometimes markedly, among the three surveys. As for the sex of caregivers, while confirming the well-known higher prevalence of caregivers among women than among men, large variations emerge across the three surveys in most countries in respect of the two sexes. The takeaway message of the paper is that it is urgent to promote international concerted action in gathering comprehensive informal caregiving information and/or exploring in greater depth the different intercultural understandings of informal care itself.

Research and Innovation for and with Adolescent Young Carers to Influence Policy and Practice-The European Union Funded "ME-WE" Project.

Young carers are children and adolescents who provide care to other family members or friends, taking over responsibilities that are usually associated with adulthood. There is emerging but still scarce knowledge worldwide about the phenomenon of young carers and the impact of a caring role on their health, social and personal development spheres. This paper provides an overview of the main results from the ME-WE project, which is the first European research and innovation project dedicated to adolescent young carers (AYCs) (15-17 years). The project methods relied on three main activities: (1) a systematization of knowledge (by means of a survey to AYCs, country case studies, Delphi study, literature review); (2) the co-design, implementation and evaluation of a primary prevention intervention addressing AYCs' mental health (by means of Blended Learning Networks and a clinical trial in six European countries); (3) the implementation of knowledge translation actions for dissemination, awareness, advocacy and lobbying (by means of national and international stakeholder networks, as well as traditional and new media). Project results substantially contributed to a better understanding of AYCs' conditions, needs and preferences, defined tailored support intervention (resilient to COVID-19 related restrictions), and significant improvements in national and European policies for AYCs.

Community-dwelling older adults and their informal carers call for more attention to psychosocial needs - Interview study on unmet care needs in three European countries.

BACKGROUND: Unmet care needs are usually defined in terms of receiving sufficient help in instrumental activities and activities of daily living. Research on unmet needs is mostly based on quantitative data. Older persons' and informal carers' views and experiences have received less attention. METHODS: In this paper, we rely on a definition of unmet needs which includes both unmet needs due to insufficient care and those situations where informal carers experience undue strain. Using theory-driven content analysis, we examine community-dwelling older adults' and their informal carers' experiences of unmet needs: what kind of unmet needs they have, why and in which ways these needs are left unmet and what would they want to do to improve the situation. The data consists of interviews gathered in Austria, Finland and Slovenia. RESULTS: Results of the analysis reveal that unmet needs are largely psychosocial in nature. The predominating task-oriented care systems often do not consider these as care needs. Using methods of qualitative content analysis, we conclude that care users' unmet psychosocial needs are related to lacking a personal relationship with care workers; means to maintain or develop social contacts and pursue activities and interests; and adequate home care services or respite care. Excessive responsibilities are put on informal carers as they top up and fill in the insufficient care. CONCLUSIONS: This study contributes to a broader understanding of unmet care needs: the relational aspects of care and the universal nature of psychosocial care needs should be addressed in care services.

Difficulties and Needs of Adolescent Young Caregivers of Grandparents in Italy and Slovenia: A Concurrent Mixed-Methods Study.

Many adolescent young caregivers (AYCs) care for a grandparent (GrP) with chronic disease, especially in countries with no or low developed long-term care systems and/or level of awareness of and policy responses to young caregivers. This mixed-methods study aimed at shedding light on the needs and difficulties faced by a sample of 162 adolescents aged 15-17, caring for GrPs, living in Italy (87) and Slovenia (75), respectively. A multiple linear regression model was built for the quantitative data. Qualitative data were content analysed using an open coding process. Italian and Slovenian respondents reported a moderate amount of caring activity and relatively high positive caregiving outcomes. Nevertheless, one out of three AYCs reported health problems due to their caring responsibilities. Compared to their Italian counterparts, Slovenian respondents were supported to a lesser extent by public services. Italian respondents faced communicative and practical problems; Slovenian AYCs experienced mainly emotional discomfort. AYCs from both countries requested emotional and practical support from formal services and family networks. Further, Slovenian AYCs requested emotional support and a personalized learning plan from schoolteachers. Support measures aimed at training AYCs of GrPs on geriatric care are recommended to address specific issues related to ageing and long-term care needs.

Life Course Pathways Into Intergenerational Caregiving.

OBJECTIVES: We develop a framework for the analysis of pathways into intergenerational caregiving to older people provided by family members using life course concepts of key turning events in life, cumulative processes, and linked lives within the family realm. METHODS: Using framework analysis, we analyze semistructured qualitative interviews from a sample of dyads (older cared-for adults and their main family carers comprised of children, children-in-law, and grandchildren) in Austria (N = 24) and Slovenia (N = 52). Data were collected in 2019 through purposive sampling, including dyads from a differentiated socioeconomic background and gender. RESULTS: The analysis reveals 4 nonexclusive pathways into caregiving. One pathway is associated with single turning events occurring in family or work trajectories of carers that expanded the possibilities for caregiving later in life. A second pathway referred to cumulative processes that later influenced transitions into caregiving, such as personal biographies marked by weak labor market attachment. Another cumulative pathway, exclusive to caregiving, is characterized by continued and sustained exchanges of support within families that cement reciprocal ties that underpin caregiving at later stages. In the fourth pathway, life trajectories of siblings, but also family relationships and conflicts, constrained carers into their role. DISCUSSION: Decisions regarding caregiving within families can be best understood as processes, linked to developments in other trajectories in carers' lives, as much as to internal family dynamics and relationships. Becoming a carer may be itself the result of intertwined accumulated vulnerabilities, as well as cumulative exchanges within families.

Slovenian midwifery professionalization: Perception of midwives and related health professions.

INTRODUCTION: This article presents research into the professionalization of midwifery in Slovenia. Since recognition by related occupations is important for professions, this comparative study asked doctors and nurses in Slovenia about their perceptions of the status of midwifery. METHODS: A questionnaire survey was conducted with 300 Slovenian midwives, 666 nurses and 416 obstetricians. The questionnaire included statements covering traditional sociological notions of the profession (ethics, theory, power), and three notions based on new elements of professionalism (reflective practice, interdisciplinary working, and partnership with clients). RESULTS: Findings suggest that nurses perceived themselves to be less autonomous than midwives, and this partly explains why most nurses thought that midwifery should be a specialized course of study, after the general nursing diploma. Obstetricians claimed to support midwives, however, they did not give midwives credit for basic midwifery competencies and did not feel midwifery to be equal to their profession. Midwives revealed not to feel autonomous; they felt that nursing and obstetrics is jeopardizing independent midwifery practice. CONCLUSIONS: Slovenian midwifery was poorly evaluated in some attributes of professionalism, especially knowledge and autonomy. Even midwives themselves consider midwifery more occupation than profession. The autonomy of midwifery will be hard to achieve in the institutions of medical dominance. The study revealed that participants of all three groups are in a competitive relation and are poorly aware of the roles and competencies of the other two professions. Therefore, partially joined education might be beneficial in order to promote interprofessional collaboration in the future.

Promoting Mental Health and Well-Being among Adolescent Young Carers in Europe: A Randomized Controlled Trial Protocol.

It is estimated that 4-8% of youth in Europe carry out substantial care for a family member or significant other. To prevent adverse psychosocial outcomes in young carers (YCs), primary prevention resilience building interventions have been recommended. We describe the study protocol of an international randomized controlled trial (RCT) of an innovative group intervention designed to promote the mental health and well-being of adolescent YCs (AYCs) aged 15-17. The RCT will be conducted in six European countries in the context of the Horizon 2020 European funded research and innovation project "Psychosocial support for promoting mental health and well-being among adolescent young caregivers in Europe" ("ME-WE"). The ME-WE intervention is based on Hayes and Ciarrochi's psychoeducational model for adolescents and will consist of seven 2-h sessions in a group format, aimed to help AYCs build psychological flexibility and live according to their values. The control group will be a waitlist. Primary and secondary outcomes and control variables will be measured at baseline (T0), post-intervention (T1) and 3 months follow-up (T2). The COVID-19 pandemic has made amendments necessary to the original study protocol methodology, which we describe in detail. This study will contribute to building an evidence-based manualized program that educators and health and social care professionals can use to support AYCs in their transition to adulthood. From a research perspective, the outcomes of this study will contribute to evidence-based practices in primary prevention of psychosocial difficulties in AYCs and will gather novel knowledge on the effectiveness of Hayes and Ciarrochi's model for use with middle adolescents with caring responsibilities. The trial has been preregistered (registration number: NCT04114864).

Postgraduate education in healthy and active ageing: learning needs, curriculum and expected outcomes: a scoping review protocol.

Background: As the European population ages, it becomes increasingly important to promote and facilitate healthy and active ageing and age-friendly societies. Professionals across a range of disciplines and sectors need knowledge and skills to support both. Objective: This scoping review aims to identify and map the literature on learning needs, learning outcomes and respective curricula in healthy and active ageing and age-friendly society concepts. Inclusion criteria: Studies focused on the teaching/learning process in healthy and active ageing and/or age-friendly society, of any design type, are eligible. Included studies may focus on undergraduate, postgraduate or continuing education and on any aspect of the educational process, such as needs analysis, content delivery, learner satisfaction/acceptability, or education outcome. Methods: This review will follow the Joanna Briggs Institute (JBI) methodology for conducting scoping reviews. Four electronic databases, PubMed, EBSCO (Academic Search Complete), Scopus and Applied Social Sciences Index and Abstracts (ASSIA), will be searched, limited to studies published from 1 st January 2000. Text language will be limited to English, German, Greek, Portuguese, Finnish, and Slovenian. Google Scholar and Research Gate will be searched for grey literature, limited to the first 50 results of each. Title and abstract screening, followed by full-text screening will be undertaken independently by at least two reviewers. The JBI extraction tool will be adapted for data extraction. Quality assessment will be conducted using a tool developed by Hawker and colleagues. A narrative synthesis will outline the data in relation to the aims and objectives outlined.

How Many Older Informal Caregivers Are There in Europe? Comparison of Estimates of Their Prevalence from Three European Surveys.

Informal caregivers are people providing some type of unpaid, ongoing assistance to a person with a chronic illness or disability. Long-term care measures and policies cannot take place without taking into account the quantitatively crucial role played by informal caregivers. We use the European Health Interview Survey (EHIS), the European Quality of Life Survey (EQLS), and the Study on Health and Ageing in Europe (SHARE) to measure the prevalence of informal caregivers in the European population, and analyze associated socio-demographic factors. This rate ranges between about 13 percent in Portugal and Spain, and more than 22 percent in Luxembourg, Belgium, and Denmark. It declines in older age groups and, on average, is lower in men than in women in all countries studied, and lower among the poorly educated compared to those with higher levels of education. However, large variance was observed in the average share of informal caregivers for most countries between the three surveys. Our findings, estimated through the three surveys, reveal common trends, but also a series of disparities. Additional research will be needed to enable policy makers to access a richer and more harmonized body of data, allowing them to adopt truly evidence-based and targeted policies and interventions in this field.

The awareness, visibility and support for young carers across Europe: a Delphi study.

BACKGROUND: Across Europe, young carers (YCs) and their need for support receive limited attention in the media, policy and empirical research, even though, similar to adult carers, they also provide care to ill family members. The Delphi study, a qualitative research methodology, which provides the focus for this article, had the overall aim of exploring existing successful strategies to support YCs. Compared to YCs, even less is known about adolescent young carers (AYCs), a group that is in a critical life transition phase. The study forms part of an EU Horizon 2020 funded research project on AYCs aged 15-17 years old. METHODS: A two-round Delphi study was conducted with 66 experts on YCs from 10 European countries. Topics included: (i) visibility and awareness-raising of YCs at local, regional, and national levels, (ii) current interventions to support YCs, and (iii) future strategies to support YCs. RESULTS: Experts reported a lack of visibility and awareness about YCs in general, and AYCs in particular. Although awareness is slowly increasing in most countries, with the UK ranked highest, experts acknowledged that it remains challenging to identify YCs in many countries. Furthermore, the level and type of support available for YCs differs, with most countries mainly offering support on a local level. Diverse views were expressed regarding future strategies to support YCs. Experts highlighted the importance of specific legislation to formalise the rights of YCs, and the issue of whether young people should be safeguarded from caregiving or if this should be considered part of regular family life. They also emphasised the relevance of available integrated support services for YCs, including schools, family, health and social care. CONCLUSIONS: In most European countries, there is a lack of awareness and visibility on YCs. Identification of YCs is a crucial first step and there is need for a common definition of YCs, together with greater opportunities for young adults to identify themselves as YCs.

Positive and Negative Impacts of Caring among Adolescents Caring for Grandparents. Results from an Online Survey in Six European Countries and Implications for Future Research, Policy and Practice.

Although up to 8% of European youngsters carry out high-intensity care for a family member, adolescent young carers (AYCs), especially those caring for their grandparents (GrPs), remain an under-researched group. This study aimed at addressing the current knowledge gap by carrying out an online survey in Italy, the Netherlands, Slovenia, Sweden, Switzerland, and the United Kingdom. The analysis included a final sample of 817 AYCs aged 15-17 years old. AYCs of grandparents (GrPs) were compared to AYCs of other care recipients (OCRs), in order to identify any difference in positive and negative caregiving outcomes and exposure factors between the two groups. Linear or logistic regression models were built, and multivariate analyses were repeated, including a fixed effect on the country variable. AYCs of GrPs experienced more positive caregiving outcomes than AYCs of OCRs across all six countries. Being female or non-binary, and having a migration background, were associated with more negative outcomes, regardless of the relationship with the care recipient. Further research on intergenerational caregiving outcomes is recommended for shaping measures and policies, which preserve the intergenerational emotional bonds, whilst protecting AYCs from inappropriate responsibilities, undermining their mental health and well-being.

Evaluation of Access to Long-term Care Services for Old People Ageing in Place in Slovenia.

THEORY: The quality of long-term care services has an important effect on the quality of life of their users and their informal carers. By identifying gaps between provision of services and users' needs we can suggest adjustments of the long-term care services and advance their development. METHOD: The data from the first Slovenian national survey of social homecare (SHC) users and their informal carers was utilised. Linear regression analysis was used to evaluate factors that affect assessments of five-dimensional concept of access. RESULTS: On average, affordability was rated the lowest (mean=2.9) and acceptability the highest (4.0), with availability, accessibility and accommodation (mean=3.6) in the middle. Regression analysis explains 15% of variability in affordability, while for other dimensions much less. Caregiver's needs are the most influential predictor of access, negatively influencing the rating of access (availability B=.127, accommodation B=-.113, acceptability B=-.120, affordability B=-.155). Care recipients' needs also affect the rating of affordability (B=-.132). Family income negatively influences the rating of availability (B=-.115), accessibility (B=-.076) and affordability (B=-.270). Residents of rural areas rate availability (B=-.070) and affordability (B=-.067) less favourable. DISCUSSION: This study showed that affordability is rated the least favourable among components of access. Adjustment in private out-of-pocket co-payment mechanism is suggested.

Determinants of Unmet Needs among Slovenian Old Population.

BACKGROUND: Population ageing has significant effects on societies. The organization of care for dependent old people is one of the key issues for ageing societies. The majority of care for homebound dependent old people in Slovenia is still performed by informal carers, even though the use of formal services has been increasing over the last 20 years. The proportion and characteristics of people with unmet needs are important for the development of long term care social policy. METHOD: The SHARE (Survey of Health, Ageing and Retirement in Europe) survey was used to assess the determinants of care arrangements and of unmet needs of the aging population in Slovenia. Multinomial regression analysis was used to evaluate individual and contextual determinants of care arrangements and unmet needs. RESULTS: The proportion of older people with unmet needs is 4%. As expected, "needs" (Functional impairment OR=4.89, P=0.000, Depression OR=2.59, P=0.001) were the most important determinant, followed by the predisposing factor "age" (age OR 1.15, P=0.000) and two enabling factors, namely:"community setting and "availability of informal care within household" (Urban areas OR=.47, P=0.021; Household size 3+ OR=2.11, P=0.030). CONCLUSION: This study showed that there are a proportion of older people in Slovenia with severe needs for care, which are being unmet. As shown by the importance of enabling factors, social policy should encourage the development of formal services in rural areas and elaborate policy measures for informal carers.

How do midwives in Slovenia view their professional status?

OBJECTIVE: The aim of the study was to explore Slovenian midwives' views of their professional status. The influence of participants' educational background on their views was also examined, since higher education is related to professionalism. DESIGN: This was a quantitative descriptive survey, using postal data collection. The questionnaire comprised of six elements crucial for professionalism--three elements distinctive of 'old' professionalism (power, ethics, specific knowledge) and three characteristics of 'new' professionalism (reflective practice, inter-professional collaboration and partnership with users). PARTICIPANTS: A total of 300 midwives who were registered in a national register of nurses and midwives at the time of the study. The response rate was 50.7% (152 returned the questionnaire). Participants that were on a probationary period were excluded, leaving 128 questionnaires for analysis (43%). Some 40.9% participants had secondary midwifery education, 56.7% had higher midwifery education and only few (2.4%) finished postgraduate education. FINDINGS: The majority of participants did not consider midwifery to be a specific profession. Midwives with secondary education were more likely to consider practical skills to be important than theoretical midwifery knowledge. In general midwives did not feel enabled to practice autonomously; and this caused them to face ethical dilemmas when aiming to fulfil women's wishes. All participants with midwifery secondary school education thought that obstetrics jeopardises midwifery scope of practice, but only half of the BSc participants thought this. One-fifth of all participants estimated that midwifery is also threatened by nursing. The respondents reported feeling a lack of control over their professional activity and policy making; however the majority of midwives claimed that they were willing to take on more responsibility for independent practice. KEY CONCLUSIONS: Slovenian midwifery cannot be considered to be a profession yet. It faces several hindrances, due to its historical development. IMPLICATIONS FOR PRACTICE: In order to develop a specific professional identity for midwives, the content and structure of education should be analysed and changed in order to improve socialisation and professionalism. In clinical settings, the scope of midwifery practice and responsibilities, as defined by EU directives, should be agreed by all professional groups.

Individual and Contextual Determinants of Social Homecare Usage in Slovenia.

THEORY: Social homecare is important for older people, as it enables them to remain in their own homes during worsening health, thus relieving the burden on institutional facilities such as homes for the elderly or nursing homes and hospitals. METHOD: A representative survey of social homecare users was employed to assess determinants of the scope of social homecare in Slovenia. Multiple regression analysis was used to evaluate determinants defined by Andersen's behavioral model that affect the scope of social homecare. RESULTS: As expected, need (Functional impairment B = .378, P = 0.000) was the most important explanatory component, followed by availability of informal care network (Lives alone B = -.136, P = 0.000; Has children B = - .142; P = 0.000) and other contextual factors such as total costs of the services (B = -.075; P = 0.003) and temporal availability of services (B=-.075, P=0.012). The model explained 18% of variability in the scope of social homecare. CONCLUSION: This study showed that data on the individual level, as opposed to data on an aggregated level, show different determinants of social homecare utilization. Moreover, the results showed that social homecare is especially important in two circumstances: when older people have a high level of need and when they do not have access to informal care networks. Contextual factors had a moderate effect on the scope of social homecare, which shows universal access to the latter at the individual level.