Visibility and awareness-raising
In the first round, experts reported on the low visibility of YCs across Europe, including a lack of systematic studies on the subject of (A)YCs. The term YCs is not recognisable in all countries according to the experts, which can make identification challenging. Especially on a national level, experts reported that the visibility and awareness on YCs is low. Hence, when visibility and awareness is raised, this primarily takes place on a local level. Experts did report that despite a lack of visibility, awareness has slowly been increasing in recent years supported by attention in the media, such as in television shows or in newspapers. Experts argued that the majority of health and care systems across Europe still work in silos with a lack of integration. Some experts added that this also contributes to difficulties in identifying and reaching YCs because they can fall between different care or support systems/legislations.
“We don’t want it [young adults in the role of a carer] to occur in Sweden, I would say. So, we actually don’t see, and there isn’t so much support for them [YCs], which means that they often live in a very vulnerable situation” (Participant 7 (P7), Round 1 (R1), Sweden).
“I think that in Switzerland there is not much visibility [on YCs] at this moment. I think that it is a topic that no one talks about. I think the people that know about this topic talk about it. But all others they don`t know that this is a topic in Switzerland because it’s invisible.” (P4, R1, Switzerland).
Strategies, interventions and programmes to support YCs
Experts from most countries reported that there are existing support programmes, projects and activities relevant to YCs. It is worth noting that there were differences reported within countries and between regions. The available programmes do not always target AYCs in particular, as shared by experts from Italy and Switzerland. The programmes differ in their approach by targeting individuals or groups, their duration and frequency, and demonstrated effectiveness. Experts shared a variety of strategies, interventions and programmes, such as support groups for children and adolescents with a parent or sibling with a disability or illness. Through these support groups, YCs are provided with information and realise they are not alone. Respite care is also important to support YCs according to the experts, with activities where they can relax and detach from their home situation for a while and get in contact with fellow YCs for peer-support. In addition, there are multiple initiatives in schools to raise awareness on the subject of AYCs in school plays, guest lessons or workshops. Additionally, experts explained that to follow a whole family approach, support groups for families have been set up in various countries. Finally, training programmes exist for professionals on how to identify and support AYCs.
“We carry out psycho-educational interventions for parents and also for children if they want. We are in the preventive sphere in our case and therefore [they] have their own space of speech, they can express as well as they can listen to their parents. Our function is to improve communication within this family. And then this improves family relationships.” (P8, R1, Italy)
Within the interventions and programmes, experts reported a focus on a number of coping strategies for YCs, such as providing them with tools to try to gain control over the situation. In addition, several experts raised the fact that YCs may often feel responsible to do what is needed and might not self-identify as a YC because they may find caring normal and may not be aware of the concept of a YC. Furthermore, according to a number of experts, YCs rather do not want to draw attention to themselves, because they do not perceive themselves to be the one in need.
Future support to meet the needs of YCs with a focus on supporting their well-being / health situation
Experts expressed the future needs of YCs with respect to their well-being and health situation. They argued that adults and professionals need to be better trained in identifying YCs, so they can identify who and where they are, and can offer support. Experts shared that there is a need to accept the existence of YCs and reduce the stigma of caregiving. Experts shared that we should notice children who are YCs and listen to them. Further, they argued that whenever support is developed – in digital or non-digital form – it should always be developed in co-creation with YCs to fit their needs and preferences.
Some experts expressed the need for specific legislation for YCs. At the same time, they addressed the question if, and to what extent should young people be responsible for providing care tasks. Furthermore, experts stated that there should be less inequality within countries concerning access to support services. For YCs themselves, it is important that they can get in touch with fellow YCs, face to face and/or digital, according to the experts. Furthermore, schools should be more flexible towards YCs in respect to school times and deadlines. Experts reported that there is an increasing need to adopt a perspective or approach in which the whole system, as well as the family, is involved, with collaboration between stakeholders from social care, healthcare, government, and education. Experts reported that such an integrated approach is necessary so knowledge can be shared and disseminated.
“Public and private associations must have a family-based approach to the problem, not an individual approach. You can start from one but then you have to consider all family.” (P10, R1, Italy)
Second Delphi Round
The synthesised findings and results from the discussions of round 2 are presented in narrative form below, according to the main identified themes from the qualitative data analysis supported by illustrative quotes.
Visibility
In round 2, experts confirmed the results of round 1 on low, but increasing, visibility of YCs. To support the visibility of YCs across Europe, most experts agreed and expressed the need for a European NGO with structural funding independent of national budgets and for fewer inequalities within and between countries. They also mentioned a lack of recognition and knowledge among adults working with youngsters for instance, social care and schools.
According to some experts, increased visibility of YCs might also have a negative effect. Visibility means recognising YCs as a problem, which could contrast with the idea of a family where it is viewed as natural for family members to support one another, and caring roles are viewed as being private and hidden. Furthermore, experts acknowledged that sometimes YCs themselves might not want attention.
To increase visibility, Italian experts shared that some actions currently targeting other groups, such as children (not necessarily seen as carers) of parents with mental illnesses or youngsters at risk of dropping out of school early, could be positively applied to YCs. One example of this could be an app to share information about health and social services.
“About the AYCs’ visibility, I agree that it is quite lacking, because everything is always due to the individual action, to good sense of the individual or to the upbringing that the individual has had or to personal experience […] This in regard to visibility.” (P3, R2, Italy)
Awareness-Raising
As found in round 1 of the Delphi study, awareness is steadily increasing, according to the experts. Experts reached consensus on the differences in the level of awareness on the topic of YCs in organisations such as schools, welfare organisations and social services, with there being greater awareness in the UK, followed by Sweden, and the least awareness in Slovenia and Italy. Moreover, concerning the role of schools, it was questioned by some experts what the extent of responsibility is for schools concerning the phenomenon of YCs.
Within countries, experts noted that channels that could be used for dissemination of knowledge - and especially individual YC stories - are reports, brochures, films, social media, and mass media. Some Swedish experts reported that the YCs they know are happy to get attention, which contrasts with the results from some other countries. Some experts pointed out that campaigns only create some awareness for a short period of time, and that sustainability of interventions and awareness-raising is highly needed. They argued that long-term awareness is not necessarily guaranteed in most countries, even in countries scoring relatively high on awareness of YCs, such as the UK. Dutch experts confirmed an increasing national awareness of YCs with a considerable shift compared to the first round of interviews - for example due to a research report on young carers by the Netherlands Ombudsman for children that was officially reported in a letter to the Dutch parliament[1]. On an international level, knowledge could be disseminated at international conferences. The information should include a definition of the term (A)YC, their life situations, YCs’ rights, their families’ rights and available support. An introduction of a national/international day for YCs was also proposed.
“[...] films can help to make the children’s and youth’s perspective clearer, because it affects you. That’s why we usually watch films in our meetings for children’s advocates[2]. There are films on the Swedish Family Care Competence Centre’s website, where children and youngsters tell their stories, making it life-like and clear” (P6, R2, Sweden).
Identification
Experts from diverse European countries acknowledged that on a national level, they struggle with ‘formally’ identifying YCs. Screening, assessment and early identification are needed. Whenever YCs are identified - and if they are acknowledged - then formal support should be put into place, according to experts. They see the responsibility for developing programmes and strategies as primarily belonging to the state, to support and develop laws and regulations concerning YCs, and to provide them with information and additional help to relieve YCs of their caring tasks. Experts stated that without proper services in place, the identification could feel meaningless at best, and harmful at worst.
According to the Swedish experts and one expert from Ireland, identification implies acknowledgement that YCs exist and this contrasts with a strong - mainly Western - value that young adults should not take up roles reserved for parents (parentification), i.e. (un)paid work. Moreover, experts noted that we should be aware that children may be afraid that whenever they are identified, that they may be taken away from their home by social services.
With respect to responsibilities for identifying YCs, the primary responsibility is - according to some experts - on the school system, while in addition, many experts agreed that it should be routine for healthcare professionals to always ask about children and whether they have any needs when a parent is ill. Several experts agreed that the social conditions of a child should be screened when enrolling in school, i.e. that schools should act as a gatekeeper.
Furthermore, experts suggested integrated actions in which educational, social and health services should be jointly involved. However, in contrast to the advantages of involving schools in identification and support, some of the experts expressed concerns with placing too high expectations on schools due to limitations in availability, funding, time, and formal responsibilities.
“Across all sectors, early identification and intervention for all children in need is required. Yes, so experts identified other key stakeholders and it’s got CAMHS (Child and Adolescent Mental Health Service teams) who can play a more significant role if they are trained to deliver sessions for children and their families. Additionally, educators within the school system are important stakeholders.” (P6, R2, UK)
Definition
Experts emphasised in the round 2 interviews that there is a need for a shared definition and terminology of YCs and AYCs across Europe, which is crucial for identifying them. However, it was acknowledged that YCs experience their caring role differently and labels can have different meanings. Swedish experts reported that to go ahead and develop functional and effective support interventions, the distinction between the terms ‘children as next of kin’ and ‘AYC’ must be defined, clarified and disseminated. Experts from Slovenia stressed that it is important to be careful not to invent the problem by forming too broad a definition of YCs. Experts stressed that we should be cautious that the term YC takes on a negative connotation and becomes a label, in particular, in research where academics try to give insights for helping policymakers to solve citizens' problems.
“The young carers that I’ve spoken to don’t seem to have a consistent view on what that terminology should be, so I don’t know that there will ever be a terminology that meets the needs of everyone, and everyone is satisfied with.” (P2, R2, UK)
“As I understand it, in Slovenia, the definition of who is and is not a young carer will, in my opinion, affect the recognition and future definitions of this problem. Therefore, it seems logical to create this definition as broad as possible [...] to acknowledge a number of situations in which young carers can find themselves in.” (P8, R2, Slovenia)
Interventions and personalisation
During the second round, some promising examples of personalisation of interventions were reported by experts. In the UK, the voluntary sector has historically provided the most support for YCs compared to the governmental sector, which lags behind in providing support. Experts reported on flexible interventions that are tailored to different YCs’ needs that could differ for social, financial and individual conditions. From the Swedish results, to be able to explain what they need and want, experts explained that YCs first need help to reflect on their situation, their perceptions, experiences, thoughts and feelings. Some experts pointed out that support and interventions should be provided at schools. As noted earlier, they also acknowledged it was important to create flexibility for students, for example with support of a carers’ card to ensure flexibility in homework and exams. A related issue was raised by several experts - that programmes and support should run through all levels of education - from primary school to university, i.e. transition support or transitional services. This support is important due to the gap in existing transitional services.
With respect to tailored support for young carers in the welfare sector, experts underlined that YCs need access to tools and support to find useful coping strategies and help build their own resilience, such as summer camps. Experts shared and acknowledged that it is important to be aware and observant of the risks with support groups, for example, that participants in the group influence each other negatively. Furthermore, they reported that YCs also sought more holistic support, i.e., guidance on career choices, nutrition, and life management skills. Experts agreed on some limitations of interventions used in the welfare sector. These revolved around four issues: (1) interventions not matching the needs of (A)YCs, (2) good interventions that remain underused because people are not familiar with them, (3) a lack of research to substantiate the effectiveness of interventions in the welfare domain, and (4) lack of capacity or finances to arrange formal support programmes. Experts stressed that it is important not to simply focus on and create new programmes and interventions specifically for AYCs, as support for AYCs could be included in already existing interventions and programmes designed for groups such as, informal carers or children in general. As reported by UK experts, these existing programmes could be accepted as support by AYCs, since they do not specifically focus on their role as a carer and it is important that these programmes are less dependent on funding.
“I think in some respect, it’s gotten worse more recently as a result of cuts to local authorities [in the UK] in terms of the budgets. Some areas may have had support groups for young carers in the past but have now discontinued funding for those.” (P2, R2, UK)
Online support, interest in apps and co-creation
Multiple experts expressed a preference for providing online support by means of websites or mobile applications. Overall, they agreed that modern and concrete approaches are needed to raise awareness and support YCs, such as YouTube films, social media and apps. According to the experts, there is a need for an individual approach which is based on self-organisation and is easy to access by means such as an information platform or app. UK experts also pointed to digital online-based peer support to be most effective with YCs.
Experts from a variety of countries pointed out that whenever an app for YCs is built, the organisations behind the initiative also have a responsibility to exercise control through moderation and dedicated professional support, as well as structural financing for continuation of the app. Furthermore, online information about support for YCs should be directly available and not hidden via complex menus with lots of other information on care-related topics. According to UK experts, several national online support spaces in the UK have been closed because of lack of funding. With respect to online support programmes and apps, many experts agreed that the programmes should be designed in co-creation with and for YCs.
“If we think of ‘parental support’, if you look at how it [...] the municipalities’ websites […] It’s about fifteen clicks before you get some information about this. And I think that ‘young carers’ may be twenty-five or thirty clicks away, before you can get some information about it” (P4, R2, Sweden).
“I absolutely agree that the programmes should be designed in cooperation with them (AYCs), so we would be able to really originate from their needs.” (P7, R2, Slovenia)
Laws and regulation
A considerable number of experts reached consensus and expressed the need for laws and regulations to formalise the rights of YCs and AYCs on a national or European level. The idea of a specific law is considered positive according to some experts, to give visibility and promote the integration of interventions but, at the same time, they emphasised that it should rather not be a rigid law and that it should not become reduced to purely financial support. Furthermore, by some experts, it was questioned what the effect could be of laws and regulation on the level of responsibility placed by society on YCs.
Some experts are impressed by the laws in Sweden (Health Care Act) and the Children and Families Act of 2014 in England and Wales. However, it is relevant to note that - according to the UK experts - the current legislation has little real benefit for YCs. Overall, according to some experts, we should rather highlight the group of YCs and support them where necessary, instead of requiring some specific legislation without being able to enforce the law and provide follow-up due to a lack of funding. Like the experts in the UK , a Swedish expert pointed that although laws are reformulated, there is a risk that this will have little impact on the individual. Experts from Slovenia also emphasised that there is no need for creating new laws/legislation, as is also reported by experts from the Netherlands. Some of the Slovenian experts stressed the need to create a small body or pressure group to address the problem of YCs. Existing laws on e.g., long-term care or youth care should be sufficient to protect and support YCs where necessary. YCs and AYCs in Switzerland could be protected by the legislative framework for young persons under the age of 18 years, and according to Swiss experts, changing the legislative framework in Switzerland is extremely difficult due to the political structure. Therefore, in Switzerland it would be better to create a new national policy first.
“Yes, you can make regulation for that. But we all know, rules only give some direction [...]. It’s the people in society who themselves make this real [...]. And look, in the Netherlands we have plenty of good regulation. But still, we see that when people interact with one another, that people get hurt or disappointed [...]. Well, regulation is insufficient. A rule is only a kind of guideline and takes the sharp edges of injustices.” (P3, R2, the Netherlands)
Training, Education & the Role of Schools
According to the experts, there is a need to increase the training and education of care and welfare professionals and to create a common knowledge base including: how to approach children, young people and parents; how to identify YCs; how to talk to YCs; how to continue once a professional has identified a YC; and available support efforts, also at schools. In addition, schools should be more involved in identifying and supporting YCs with trained personnel. As already discussed, at the same time, experts also considered the scarce time that is available among teachers. There could be training days or networks formed that meet regularly. Such education for professionals should be included in the professionals’ basic education programs. Experts suggested that training should instead be organised for all sectors (health, education, and social).
“What are the strategies on which a school must work? First of all, create a teacher staff meeting in which professionals are involved, who are trained on all the problems of AYCs, a teacher staff meeting that shares educational management, the teaching guidelines, and then works a lot on the class group... I think that many strategies from the point of view of the school with regard to AYCs must work on the class group, which must be self-supporting, must become a team [...] and support each other according to everyone’s needs, so for me, in school you have to work now, above all, on the class group.” (P6, R2, Italy)
[1] Kinderombudsman (2018). Hoor je mij wel? - Kinderen van ouders met een ziekte, verslaving of beperking. KOM003/2018. TK (2017/2018). Brief over Kinderen van een langdurig zieke ouder Tweede Kamer, vergaderjaar 2017/2018, 30169, nr. 70.