Table 2 Summary of the Delphi results from the first round per country
From: The awareness, visibility and support for young carers across Europe: a Delphi study
Visibility and awareness raising | Strategies, interventions and programs to support AYCs | Future needs to support well-being / health situation | |
|---|---|---|---|
United Kingdom | - Different abilities/accessibility of formal care for YCs in different regions - On a national level an increase of awareness by television programs | - Current policy is ‘The Care Act’ and ‘The Children and Families Act’ (2014) working together to give AYCs legal right to a carers assessment on appearance of need - Well known are hundreds of young carer projects across the country (however, severe cuts in funding) - Young Carer Health Champions programme of the NHS - Child and Adolescent Mental Health Service teams (CAMHS) | - Need for general public to know about AYCs - Austerity policies have a negative impact on their situation - New legal rights for young carers in Care Act and Children and Families Act have little actual benefit. |
Sweden | - Lack of visibility, to very low regarding AYCs - Children as next of kin is the term commonly used. - Childhood should be free from having a caring role - AYCs not directly mentioned in Swedish legislation | - Swedish Health Care Act 2010, children have a right to receive information about their parents’ illness. This means that health care professionals have a legal obligation to provide children of parent/s with mental illness, serious physical illness or disability or have unexpectedly died, with information, advice and support - People with disabilities or severe illnesses have certain rights for help and support from the community, which means that AYCs’ responsibilities for care can be reduced. - Parental support - Beardslees family intervention – when a parent suffers from mental health problems or addiction. - Group activities for families who have a member suffering from cancer, and for families in grief - Supportive groups for children/adolescents whose parent/s have a disability, mental ill-health or addiction. - Relaxation in e.g. summer camps | - Identify fragile families at an early stage and provide support they need - Make AYCs visible - Reduce stigma - Legislation needed - Digital group meetings - Have someone to listen to their story - Education about AYCs - Funding and digital solutions to provide help and support - Increase children’s knowledge of their parents’ illness - Provide opportunities for children to talk about their situation, to meet and get support - Opportunity to relax together - Society should be responsible for all care and AYCs should be relieved from caring tasks. |
Switzerland | - Difference in coping between Swiss migrant children was mentioned. Where Swiss children hide problems because they consider them as private, migrant children find their caring role more normal - Interventions successful at schools (local level) - On a national level no visibility - Difficult to reach group (do not communicate situation to their GPs) - Research on the topic has raised awareness with some organisations | - Few local programs to support AYCs (German part offers more than the French and Italian part) - Some programs support AYCs but focus only on children of parents with mental health problems - Focus on relieving relatives (e.g., organizing summer camp) - Role of child protection service and < 18 legislative framework - Different programs have been carried out in schools to increase awareness - Few schools offering counselling to students who identify themselves as an AYC - In one Higher Education Nursing School, the topic of ‘caregivers’ and family is taught which includes young carers. Differences between Swiss children and migrants in respect to coping (migrants caring role ‘normal’) | - Schools should support AYCs to a greater extent - Increase awareness - Children under 18 should not take on board too many responsibilities - More flexibility needed in schools - Individual as well as collective intervention are needed to address different needs of AYCs and their families - The topic should be taught in the school curriculum - Professionals need to be more aware of AYCs and understand issues in order to support AYCs better - NGO’s need more funding - Whole society is responsible and need for a cultural change |
Italy | - Lack of visibility and awareness on AYCs at all levels - A couple of examples of visibility/awareness raising (schools & hospital) - Visibility dependent on experience of teachers or medical professionals | - A couple of known interventions (support action in a school and by ANS in area of Carpi (in Northern Italy) | - Need for information and training for all health and social professionals and policy makers - Long-term multi-actor programs (ICT app) - Promote self-awareness - Ministry of Education, Welfare and Health are responsible, as schools and regional school offices - Funding (public with private and non-profit) - Many other actions that could be applied/transferred to AYCs - Need for a law on informal carers - Local authority as main actor - Role for schools and teachers in supporting AYCs (awareness raising) - Long term programs and whole-family approach |
The Netherlands | - Low visibility and AYCs do not always recognize themselves as AYCs. - Differences in visibility between regions, municipalities are responsible for support adult caregivers and well-being of youth (struggle) - Formal policies exist on informal care, but not young carers - Schools could play an important role for increasing visibility - Welfare organizations and youth healthcare try to increase visibility | - Plays at schools and programs to support leisure activities, resilience training, support groups, etc. - Awareness programs at high schools - Guest lessons - Online platform (e.g., Sharepoint) for AYCs - Children’s Ombudsman - Activities for young carers (meet other carers) at local support centers | - AYCs should be seen as a specific group of informal carers - Focus on AYCs own strength and do not ‘problematize’ the group - Integral approach is needed. - Strive for regulation and need for having discussion on level of responsibility suited for youngsters. - Reduce stigma. - Acknowledgement of the group. - Create funding (e.g., via municipalities) for support for young carers. - Recognition of AYCs that they are AYCs - Need for specific policy and support for AYCs and putting the topic on the agenda - Need to focus on parents of children who are responsible for their care. - Need for co-creation with AYCs. - Need for integral approach (welfare, healthcare, educational and local governments that work together) |
Slovenia | - AYCs are an overlooked subject in Slovenia and also not regulated under any law - The importance to develop a definition, emphasizing that it does not relate to short-term, but long-term care - Organizations that are in contact with young people should be responsible for detecting the problem (primarily school, physicians and organizations engaged in the field of social home care) - There is no awareness about AYC in the educational field. | - Develop an integral approach, coordinated by different ministries, with cooperation of schools and other public institutions and NGOs, connected to children and their wellbeing. - The need to build on what we have - There is no need to develop a new system, what is needed is a cooperation between existing systems and infrastructure, good prevention programmes in the community - Raising awareness and getting in contact with AYC in the social media - Need to develop awareness and destigmatisation programmes - Need to develop working relationships with the family in which AYC is living - Empower AYCs with needed information about caring and also where he/she can turn to for support - It is important that the AYC is voluntarily caring for relatives and that he/she is not under constraint - Need for early recognition (important role for schools) | |
International/Europe | - Overall, visibility is low (e.g., also in Germany). - Large differences in visibility and level of awareness between countries. - Higher numbers than one would expect. - Focus on all children, not only 15–17 years old - Schools play a role - Conference on AYCs raises awareness - Awareness raising at European Commission by – among others - Saul Becker | - Media echo of TV shows (Germany) - Brochures at schools and doctors - Events to share experiences - Website in Austria (Superhands) - Holiday activities - Carers’ card in UK - Peer groups | - Raise awareness - Early prevention (ACE ‘Adverse Childhood Experiences’ screening) - Improve skills - Look and learn from support systems for children in similar situations (parent in prison) - Ensure that children are aware of and can access their rights - Should be less inequality within and between countries - Need for support for themselves, awareness of peers - More funding and staff at schools. - There is shared responsibility (family, parents, local authorities, occupations therapists, etc.) - More visibility of AYCs in society, for example carers week - Reduce Stigma - Practical and emotional support in schools - Need for recognition - Focus on a local level - Children have rights |