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"Young carers"
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The awareness, visibility and support for young carers across Europe: a Delphi study
by
de Jong, Nynke
,
Boccaletti, Licia
,
Manattini, Alessandra
in
Adolescent
,
Adolescent young carers
,
Awareness
2020
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.
Journal Article
Recruitment of Adolescent Young Carers to a Psychosocial Support Intervention Study in Six European Countries: Lessons Learned from the ME-WE Project
2023
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.
Journal Article
Exploring the Lived Experiences of Caregiving for Older Family Members by Young Caregivers in Singapore: Transition, Trials, and Tribulations
by
Mehta, Kalyani Kirtikar
,
Subramaniam, Araviinthansai
in
Activities of daily living
,
Aging
,
Caregivers
2024
Amidst population ageing trends and epidemiological transitions, there has been a growing emergence of young family caregivers, about whom most studies have been conducted in Western countries. Their subjective experiences and perceptions toward caregiving remain underexplored in Asia. This qualitative study explored the lived experiences of caregiving for older family members by young caregivers in Singapore. Interpretative phenomenological analysis was employed to collect and analyse data from semi-structured, in-depth interviews with six young adult caregivers aged between 23 and 29. Interviews were supplemented with photo-elicitation techniques to deepen interview discussions and uncover experiential significance. Findings illustrated transitions into caregiving, challenges across role conflicts and expectations amidst developmental tasks and transitions, and navigation of intergenerational conflicts and ambivalence. Although no definitive conclusions can be reached from this small-scale study, the findings offer important insights into the convergence and intensity of young caregivers’ experiences. Given that caregiving challenges are likely to continue amidst Singapore’s rapidly ageing population, these necessitate further in-depth research efforts. Implications for policy and practice across multiple stakeholders interfacing with youth and older adults are presented. A whole-of-society approach is called for to enable young caregivers to realise their full potential while contributing to their ageing families and nation.
Journal Article
Factors Associated with the Quality-of-Life of Young Unpaid Carers: A Systematic Review of the Evidence from 2003 to 2019
2023
The aim of this review was to identify factors influencing the quality of life (QoL) of young people providing care for family members with chronic illnesses, disabilities, and/or mental health and substance abuse problems (young unpaid carers; YC), as well as the social-care related QoL measures. Focused and broad search strategies were performed in four databases, identifying 3145 articles. Following screening, lateral searches, and quality appraisal, 54 studies were included for synthesis. An inductive approach was used to synthesise the findings, grouping factors associated with YC QoL into interrelated themes: “perceived normality of role and identifying as a carer”, “social support from formal and unpaid networks”, “caring demands and their impact”, and “coping strategies”. No social-care related QoL measures for YC were found. This systematic review provides groundwork for the development of such a tool and emphasises the need for further studies allowing the investigation of the interrelated factors affecting YC QoL.
Journal Article
Are Young Carers Less Engaged in School than Non-Carers? Evidence from a Representative Australian Study
2020
Evidence suggests that young carers are less likely to complete or do well in secondary school compared with young people without caring responsibilities. Positive engagement at school is an important correlate of school outcomes, yet quantitative evidence on the factors contributing to young carers’ school engagement is lacking. Drawing on the results of a national school-based survey of Australian children aged 8–14 years (
N
= 5220) in which about 9% of the sample identified as carers (
N
= 465), this paper compares the school engagement of non-carers, young carers of a family member with disability, and young carers of a family member with a mental illness or using alcohol/drugs. The analysis shows that school engagement of young carers of people with disability is not significantly different from that of non-carers, but school engagement among young carers of people with a mental illness or using alcohol/drugs is significantly lower. Among this latter group, young carers who are themselves with disability report particularly low levels of engagement. The study concludes that improved support focused on young carers of people with a mental illness or using alcohol/drugs is needed to improve their school engagement.
Journal Article
Basic Conditions for Support of Young Carers in School: A Secondary Analysis of the Perspectives of Young Carers, Parents, Teachers, and Counselors
by
Schulze, Gisela C.
,
Siegemund-Johannsen, Steffen
,
Kaiser, Steffen
in
Actors
,
Actresses
,
Analysis
2024
Young carers face a variety of challenges at school. While schools can be vital places of support, the assistance they receive at school often seems selective and fails to consider the unique life situations of individual students. This paper examines the perspective of multiple actors in the student’s school environment and explores how schools can develop comprehensive, sustainable support systems for young carers—systems that consider and involve as many actors as possible in the student’s school environment. In a secondary analysis of two interview studies, we analyzed how young carers as well as their parents, teachers, and school counsellors perceived the school support the carers received. We then developed an integrated model that incorporates these differing perspectives. The model offers an approach for implementing low-threshold support for young carers within existing school structures in relation to their family situation and outlines conditions that can support both recognized and “invisible” young carers, as well as other students.
Journal Article
Impact of young carers' experiences on their mental health in emerging adulthood: Evaluation from a psychiatric perspective
by
Inoue, Takeshi
,
Ono, Miki
,
Morishita, Chihiro
in
Chronic illnesses
,
depressive symptoms
,
emerging adulthood
2026
Aim Previous research has primarily explored the negative impacts of caregiving on young carers (YCs)' mental health during childhood and adolescence, with limited focus on emerging adulthood. In particular, quantitative evidence on the development of depression in YCs in emerging adulthood is limited, especially regarding its persistence after caregiving ends. To address this, we aimed to assess the mental health of emerging adults with YC experience by categorizing them into past YCs (pYCs) who no longer provide care and those who continue to provide care (current young adult carer/past YCs, cYAC/pYCs) alongside a non‐YCs control group. We also aimed to identify factors contributing to depressive symptoms in these groups, focusing on caregiving‐related environmental factors during childhood and adolescence. Methods Participants aged 18–25 were recruited online and divided into three groups. Demographic information, depressive/anxiety symptoms, well‐being, and peer victimization were assessed, and binomial logistic regression analysis was performed to examine the factors contributing to depressive symptoms. Results A total of 162 cYAC/pYCs, 161 pYCs, and 534 non‐YCs were analyzed. Both the cYAC/pYCs and pYCs groups had higher levels of depressive and anxiety symptoms than the non‐YCs group, with no significant differences between cYAC/pYCs and pYCs. Multivariable analysis demonstrated that female sex, taking care of their own caregiver, solo family caregiving, and experiencing peer victimization were significant predictors of depressive symptoms. Conclusion Being a YC has lasting impacts on mental health and the risk of depressive symptoms, emphasizing the need for targeted interventions to support this vulnerable population.
Journal Article
Study protocol: young carers and young adult carers in Switzerland
by
Moser, Urs
,
Sempik, Joe
,
Frech, Marianne
in
Caregivers
,
Demographic aspects
,
Health Administration
2018
Background
In Switzerland, the issue of young carers and young adult carers - young people under the age of 18 and 24 respectively, who take on significant or substantial caring tasks and levels of responsibility that would usually be associated with an adult - has not been researched before. The number of these younger carers is unknown, as is the extent and kind of their caring activities and the outcomes for their health, well-being, psycho-social development, education, transitions to adulthood, future employability and economic participation.
Methods
The project is comprised of three stages:
A national Swiss-wide online survey to examine awareness of the issue of younger carers amongst professional populations in the education, health and social services sectors;
An online survey of 4800 Swiss pupils in schools using standardised instruments to identify the proportion and characteristics of pupils who are carers; and
Semi-structured interviews with 20 families comprising family members with care needs and younger carers, to consolidate and validate the other stages of the study; and to hear directly from care-dependent family members and younger carers about their experiences of the issues identified in the surveys and in previous published research.
Discussion
The needs of younger carers and their ill and disabled family members in Switzerland have not been systematically investigated. This will be the first study in the country to investigate these issues and to develop evidence-based recommendations for policy and practice, drawing also on international research.
The present study therefore fills an important national and international research gap. It will collect important data on the awareness, extent, kind and impact of caring amongst children and young people in Switzerland, and cross-link these findings with robust evidence from other countries. The study will reveal (a) the extent of awareness of the issue of young carers amongst medical, social, health, educational, and other groups in Switzerland; (b) the proportion and number of young carers amongst a normative child population, and what these young carers ‘do’ in terms of their caring roles; and (c) direct accounts by families of their care-giving and receiving experiences.
Journal Article
Caring in Context: Development of a Family-Centred and Cross-Sectoral Framework to Support Young Carers
by
Frech, Marianne
,
Nagl-Cupal, Martin
,
Kaiser, Steffen
in
Children & youth
,
Education
,
Families & family life
2026
Background/Objectives: Children and adolescents who care for family members with illness, disability, or mental health conditions face challenges across educational, health, and psychosocial domains. Although research and practice have developed conceptual models and assessment tools to better understand and address young carers’ situations, a persistent gap remains between their needs and available support, reflecting structural fragmentation across health, education, and social care systems. To address this gap, this article presents the development of a family-centred framework spanning these sectors. Methods: The framework was developed through an iterative, empirically grounded process based on two studies within a larger research project on young carers in Switzerland. Key themes, structural challenges, and support-related factors were identified by systematically synthesising the findings of the two studies and integrated into an overarching framework linking young carers’ family contexts with cross-sectoral service structures. Results: The Caring in Context Framework synthesises empirical findings into a coherent framework for understanding and addressing young carers’ situations. By systematically extending the whole family approach to include a cross-sectoral dimension, it bridges relational family dynamics and structural service contexts. Sustainable support is conceptualised as dependent on the structural visibility and institutional recognition of young carers across all system levels, positioning identification and recognition as prerequisites for coordinated responses in research, policy, and practice. Conclusion: The framework advances conceptual clarity by integrating family-centred and cross-sectoral perspectives. Rather than creating new services, it emphasises adapting and coordinating existing structures while ensuring systematic recognition of young carers to support coherent, sustainable, and inclusive strategies.
Journal Article
Adolescent Young Carers Who Provide Help and Support to Friends
2023
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.
Journal Article