Support, Services & Interventions
Between Exposure and Caregiving: Exploring the Experiences of Adolescents and Young Adults with a Sibling Affected by Mental Disorders
MATHIEU Sasha
Paris, France
Université Paris Cité, Laboratoire de Psychopathologie et Processus de Santé
Adult-Centred Systems, Youth-Centred Needs: Service Provider Perspectives on Supporting Young Caregivers in Canada During and Beyond the Pandemic
Cayleigh Sexton
Toronto, Canada
Young Caregivers Association
Support for Young Carers by Scholarship-Providing Organizations
Kumiko Morita
Tokyo in Japan
Care Japan,Rissho University
How Coffee, Cake and Conversation Led to an Infographic of Support for Student Carers in University
Dr Breda Moloney
Limerick, Ireland
University of Limerick
This Poster outlines the work undertaken by the project team from the School of Nursing and Midwifery, at the University of Limerick in collaboration with Family Carers Ireland on raising awareness of student carers and the development of the ‘Infographic of Support for Student Carers in University’.
Dr Breda Moloney’s interests and research focuses on palliative care and the experiences of carers across the life course, including young carers, student carers, and family carers in employment. As well as, volunteering with Family Carers Ireland as a facilitator with young carer support groups, Dr Moloney teaches and facilitates undergraduate and postgraduate nursing and midwifery students across a range of subject areas in the University of Limerick.
Young adult carers in Flanders taking action for social change: a qualitative study on a grassroots organization
Lena Van Bergen
Ghent, Belgium
Ghent University and ZoJong!
Siblings as Young Carers in Japan: A Qualitative Comparison of Siblings’ and Parents’ Understandings of Care Responsibilities in Families of People with Disabilities
Risa Matsumoto
Kanazawa, Japan
Hokuriku Gakuin University
This study explores how siblings of people with disabilities experience and understand caregiving responsibilities during childhood. It also compares the perspectives of those siblings and their parents. The findings highlight differences in how caregiving roles are perceived within families and suggest the importance of recognizing siblings’ experiences when identifying and supporting young carers.
Risa Matsumoto is an Associate Professor at Hokuriku Gakuin University, Japan. Her research focuses on siblings of people with disabilities and young carers. She is also actively involved in community-based support and awareness-raising activities for siblings and young carers.
Siblings, Disability & Family Relationships
Care Deficits and the Loss of Childhood: Young Carers Experiences of Responsibility in Family Care Relations
Anna Amilon
Kalmar, Sweden
Linneaus University, department of social work
Parental burnout, quality of life and social support: associations with caregiving activities and needs of sibling young carers.
Chiara Sacchet
Paris, France
Université Paris Cité
The presence of a person with a disability or an illness-related disability within a household entails significant family and parental adjustments that may influence the roles and needs of sibling young carers. This presentation explores the links between sibling young carers’ needs, caring activities and parental factors such as quality of life, perceived social support and parental burnout.
Chiara Sacchet is a psychotherapist and PhD student at Université Paris Cité (France). Her research mainly focuses on siblings of people with disabilities or illness-related disabilities and how parental factors and family characteristics impact young carers’ needs and caring activities.
More than a Sibling: Emotional and Relational Roles of Young Carers of Neurodivergent Siblings
Jemma Nombre
Calgary, Canada
University of Calgary
Siblings as Young Carers in Japan: A Qualitative Comparison of Siblings’ and Parents’ Understandings of Care Responsibilities in Families of People with Disabilities
Risa Matsumoto
Kanazawa, Japan
Hokuriku Gakuin University
This study explores how siblings of people with disabilities experience and understand caregiving responsibilities during childhood. It also compares the perspectives of those siblings and their parents. The findings highlight differences in how caregiving roles are perceived within families and suggest the importance of recognizing siblings’ experiences when identifying and supporting young carers.
Risa Matsumoto is an Associate Professor at Hokuriku Gakuin University, Japan. Her research focuses on siblings of people with disabilities and young carers. She is also actively involved in community-based support and awareness-raising activities for siblings and young carers.
Between Exposure and Caregiving: Exploring the Experiences of Adolescents and Young Adults with a Sibling Affected by Mental Disorders
MATHIEU Sasha
Paris, France
Université Paris Cité, Laboratoire de Psychopathologie et Processus de Santé
Parental Illness, Cancer & Palliative Care
How can we improve the identification and support of young carers with a parent receiving palliative care ? An exploratory study
Morgane MESPLEDE
Paris, France
University of Paris Cité
This poster presents the preliminary results of a study aiming to explore the experience of families in which a parent is receiving palliative care and at least one child under 25 is likely to be helping them. The findings from these interviews will then be discussed in focus groups with healthcare professionals working with palliative care patients, in order to reflect on their role in identifying and supporting these young people and their families.
Morgane Mesplede is a psychologist and PhD student in psychology in France. For several years, she has been working on the topic of young carers, and more specifically on those facing the end of life and death of the person they care for.
Who cares for the young carers? Invisible needs and insufficient support among young people facing a relative’s illness.
Pauline JUSTIN
Lille, France
University of Lille
Better identifying and supporting young carers having a parent with illness: Impact of an awareness campaign for professionals and parental workshops
Fiona Lesot & Julie Glatz
Paris, France
Université Paris Cité
The EVA pilot study comprised two actions: an awareness campaign for health professionals, delivered through three videos on identification, communication about caring activities, and referrals; and two group workshops for ill parents addressing awareness of their children’s caring activities and perceived resources. These complementary interventions show potential for improving the identification and support of YCs and their families.
Fiona Lesot and Julie Glatz are PhD students at Université Paris Cité (France) and members of the JAID team. Their research aims to improve the identification and support of YCs in France.
Compassionate camp-based support for children in families affected by parental cancer: long-term practice insights with Europa Donna
Rok Kuralt
Ljubljana, Slovenia
Slovensko društvo Hospic, in cooperation with Europa Donna Slovenia
Supporting children of parents with a life-threatening illness: a scoping review
Nina Malmström
Gothenburg, Sweden
University of Gothenburg, Sahlgrenska Academy
Children of parents with a life-threatening illness may experience emotional strain, uncertainty and increased responsibilities. This scoping review mapped existing support interventions and identified six interventions addressing psychosocial support, psychoeducation and peer support. Most were developed in oncology settings, highlighting a need for timely, accessible and proactive support tailored to families affected by progressive neurological diseases.
Nina Malmström, PhD, is an Assistant Researcher at the Institute of Health and Care Sciences, Sahlgrenska Academy, University of Gothenburg, Sweden. Her research focuses on improving support for children and families living with parental ALS.
Experiences and needs of children and young adults who are living with and caring for a parent with young onset dementia: an umbrella review protocol
Sabine Metzing, Stefanie Stober, Ozlem Koseoglu-Ornek, Claudia Dinand
Germany
Witten/Herdecke University
This planned umbrella review will synthesise evidence on the experiences and needs of children and young adults aged up to 24 living with and caring for a parent with young-onset dementia. These young carers may face changing family roles, emotional distress and anticipatory grief. Following JBI methodology, the review will systematically identify, critically appraise and narratively synthesise existing systematic reviews to clarify the evidence and identify knowledge gaps.
Living with a parent facing cancer: A qualitative study of challenges and needs of young adult carers
Julie Glatz
Paris, France
Université Paris Cité
Parental cancer can significantly impact young adult children, yet young adult carers’ (YACs) experiences in oncology remain poorly understood. This study explored the support YACs provide to a parent with cancer, alongside their challenges and needs. Semi-structured interviews with 14 YACs (Mage = 22.2) revealed six key themes, highlighting both substantial support and the demands associated with caring.
Julie Glatz is a clinical psychologist and a PhD student at Université Paris Cité. Her research focuses on adolescents and young adults caring for a parent with cancer. She previously studied ill parents’ perceptions of the support provided by their children.
Health, Wellbeing & the Experience of Caring
Understanding Young Carers in Germany: Coping patterns, challenges and support needs
Dr. Veronika Anselmann
Schwäbisch Gmünd, Germany
Insitute of Nursing Science, University of Education Schwäbisch Gmünd
This qualitative study explores how young carers in Germany experience caregiving, cope with family responsibilities, and identify support needs. Based on eleven narrative-problem-centred interviews and comparative typology, findings reveal three coping patterns: self-efficacy-oriented, duty-oriented burdened, and functionally overwhelmed. Results highlight cumulative strain and the need for visible, tailored school-based and psychosocial support.
Prof. Dr. Veronika Anselmann is Professor of Nursing Science with a focus on nursing education and heads the Institute of Nursing Science at the PH Schwäbisch Gmünd. Her research focuses on care-related burden and the development of digital and AI-based support approaches for people with care responsibilities.
How do young adolescents carers perceive health ? Links with quality of life and the support they provide
Claire Jaby
Paris, France
Université Paris Cité
This study presents a researcher-developed questionnaire assessing adolescents’ perceptions of physical and mental illness, based on the Self-Regulation Model by Leventhal et al. (1992). One item per theoretical dimension is compared between young carers and young non-carers to explore differences in illness perceptions and their associations with quality of life and the support provided by young carers.
Clinical psychologist and Ph.D. candidate in psychology. My thesis focuses on middle school students’ perceptions of illness, specifically those of young carers, to explore whether these perceptions may be linked to their quality of life and the support they provide to their relatives.
Young carers in Finland: Reflections from two waves of qualitative longitudinal participatory data gathering
Aleksi Järnström & Tiina Sihto
Joensuu, Finland
University of Eastern Finland
Our project “Young carers in Finland” focuses on adolescents and young adults aged 15–24 who provide care, support, help, and/or assistance to (a) family member(s) or kin on a regular basis. We analyse the experiences of young carers by taking a qualitative longitudinal participatory approach. In our presentation, we reflect on the first two waves of data gathering. As a research question, we ask: what kind of knowledge is created when using qualitative longitudinal participatory methods when doing research with young carers?
Aleksi Järnström works as a doctoral researcher in the project “Young carers in Finland”. Tiina Sihto works as an academy research fellow and PI of the project “Young carers in Finland”. Both Järnström & Sihto work at the University of Eastern Finland.
Former young carers and the impact on early caregiving experiences over the lifespan. A Grounded Theory Study
Maren Roling
Osnabrück, Deutschland
Witten/Herdecke University
Findings from the poster provide insight into family dynamics, caregiving responsibilities, and the long-term impact of early caregiving. The former young carers took on responsibilities they did not choose, and they often took on the parental role. In this role, they sometimes felt overwhelmed and left alone. Furthermore, the former young carers describe how they were deprived of a normal childhood.
Maren Roling is a research assistant at Osnabrück University of Applied Sciences. For many years she worked as a research assistant at Witten/Herdecke University and was a fellow at the FamiLe Research College – Family Health Across the Life Course.
Health consequences of the COVID 19 pandemic for young and young adult carers: a mixed method systematic review protocol
Kaisa Johanna Marin
Espoo, Finland
Tampere University, Unit of Health Sciences
Why Are Girls More Likely to Become Young Carers? A Gender Perspective.
Kira Anna Thomasberger
Vienna, Austria
Master Student at University of Vienna & Member of Young Carers Community Austria
Young Adult Carers, Education & Transitions
Young (adult) Carers as students in nursing professions and their biographical experience with the end of life.
Evelyn Hutter
Vienna
University of Vienna
This poster highlights the biographical experiences of Young (adult) Carers with the end of life, using qualitative data from 13 storytelling cafés on “Stories about End of Life’”. It also describes storytelling cafés as a biography-oriented didactic format enabling Young (adult) Carers and teachers to share and reflect on palliative-care responsibilities, recognising these experiences as specialised knowledge resources for professional practice.
Evelyn Hutter focuses on care professionals’ biographical experiences of palliative care and biography-oriented, participatory research methods. Her ongoing doctoral dissertation explores nursing students’ pre-, extra-, and early experiences of death, dying, and end-of-life care in educational settings and professional practice.
Recognising the Diversity of Young Adult Carers: Caregiving Profiles and Mental Health
Y-Lane Noémie Zaine
Montréal, Canada
Université de Sherbrooke
This study examines the diverse experiences of young adult carers aged 18-25 in Québec, Canada. Drawing on data from 1,010 participants, we identified four distinct caregiving profiles and examined their associations with positive and negative mental health outcomes, caregiving-related impacts, and self-identification as a caregiver. Findings highlight the diversity of young carers’ realities and the importance of tailored support.
Y-Lane Noémie Zaine is a PhD candidate in psychoeducation at Université de Sherbrooke, Canada. As a caregiver herself, her personal experience shapes her research on young carers’ psychosocial well-being and support needs, with particular attention to sexual and gender minority identities.
Working with young adult carers to identify their research priorities, a photo elicitation project
Erica Ferris
Kent, United Kingdom
University of Kent
How Coffee, Cake and Conversation Led to an Infographic of Support for Student Carers in University
Dr Breda Moloney
Limerick, Ireland
University of Limerick
This Poster outlines the work undertaken by the project team from the School of Nursing and Midwifery, at the University of Limerick in collaboration with Family Carers Ireland on raising awareness of student carers and the development of the ‘Infographic of Support for Student Carers in University’.
Dr Breda Moloney’s interests and research focuses on palliative care and the experiences of carers across the life course, including young carers, student carers, and family carers in employment. As well as, volunteering with Family Carers Ireland as a facilitator with young carer support groups, Dr Moloney teaches and facilitates undergraduate and postgraduate nursing and midwifery students across a range of subject areas in the University of Limerick.
Support for Young Carers by Scholarship-Providing Organizations
Kumiko Morita
Tokyo in Japan
Care Japan,Rissho University
Growing up and Career Decisions in the Context of Caregiving Experiences during Childhood and Adolescence
Peter Huttar
Vienna
Department of Nursing Science University of Vienna
From Recognition to Action: Digital Support Groups for Young Adult Carers
Malin Björkquist
Sweden
Neurological Care, Sahlgrenska University Hospital
Young Carers and Education: Insights from a Broad Systematic Review
Anne Stöcker
Kassel, Germany
University of Kassel
The poster presents a broad systematic review of English- and German-language research on young carers and education. It examines how educational experiences and outcomes are described across studies, including research in which schooling is only a secondary topic. The poster will provide an overview of the existing evidence and identify recurring patterns and gaps for future research and school practice.
Anne Stöcker is a postdoctoral researcher at the University of Kassel. Her research focuses on sociology of disability, inclusion and quantitative methods. Her current work includes research on young carers and their experiences in school.
Recognition, Rights, Policy & Participation
Young Carers in International Child Rights Law: State Obligations Under the UN Convention on the Rights of the Child
Stefanie Gröhl
Halle (Saale), Germany
The poster illustrates the obligations under the UN Convention on the Rights of the Child and demonstrates that the contracting states are not fulfilling their obligations to a sufficient extent.
Embedding young carers experience-based knowledge in policy development
Tara Knegt
Utrecht, The Netherlands
Movisie
Young Carers: We All Know Who They Are… Don’t We? A Scoping Review of Definitions and Identification Criteria
Ana Meireles
Porto, Portugal
Universidade Lusíada
At a conference devoted entirely to young carers, it may seem provocative to ask: do we actually agree on who a young carer is? This scoping review maps how empirical studies define and identify young carers, showing how conceptual inconsistency shapes prevalence estimates, research comparability, service access, and policy. A deceptively simple question with far-reaching consequences.
Ana Meireles is a professor and researcher at Lusíada University/CIPD. From a psychological perspective, her work on young carers spans identification, prevalence, psychosocial impact and support. She has contributed to several projects in this field and currently leads CARE4_YC.PT, aiming to connect young carer research, practice, and policy in Portugal.
Concepts That Shape Support: A Comparative Concept Analysis of Young Carers, Children as Next of Kin, and Children as Relatives
Kirsi Hokkila
Turku, Finland
University of Turku
Advancing Recognition and Support for Young Caregivers in Canada: Insights from the First Canadian Young Caregivers Conference
Cayleigh Sexton
Toronto, Canada
Young Caregivers Association
We are ZoJong!: an organization and community for and by young carers
Leda Decleyre
Ghent, Belgium
ZoJong!
Young adult carers in Flanders taking action for social change: a qualitative study on a grassroots organization
Lena Van Bergen
Ghent, Belgium
Ghent University and ZoJong!