The findings are presented firstly in the form of a summative table for the Delphi study round 1 interviews followed thereafter by a narrative synthesis of the main Delphi round 1 study findings with illustrative quotes. The Delphi study 2 findings then follow in the form of a narrative synthesis.
First Delphi Round
Table 2 below provides a comprehensive overview of the Delphi round 1 findings per country and at European level.
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 recognizable in all the 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 then 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. According to some of the experts, this also contributes to difficulties in identifying and reaching YCs because they can fall in 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 programs to support YCs
Experts from most countries reported that there are existing support programs, projects and activities relevant for YCs. It is relevant to note that there were differences reported within countries and between regions. The available programs do not always target AYCs in particular as shared by experts from Italy and Switzerland. The programs differ in their approach by targeting individuals or groups, their duration and frequency, and demonstrated effectiveness of the program. Experts shared a variety of strategies, interventions and programs, such as support groups for children and adolescents with a parent or sibling with a disability or illness. By these support groups, YCs are provided with information and realize they are not alone. Respite care is also important to support YCs according to the experts, with activities in which YCs can relax and detach from their home situation for a while and to 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. Further, experts explained that to follow a whole family approach, support groups for families have been set up in various countries. Finally, training programs 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 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 programs, experts reported a focus on a number of coping strategies of YCs, such as providing YCs tools to try to gain control over the situation. In addition, several experts raised 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 they may not be aware of the concept of 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 for YCs with respect to their well-being and health situation. They argued that adults and professionals need to be better trained in identifying YCs, such that it is known who and where they are and can be offered 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 that we should listen to them. Further, they argued that whenever support is developed – in digital or non-digital form – then this support should always be developed in co-creation with YCs to fit their needs and preferences.
Some experts expressed the need for specific legislation for the group of YCs. At the same time, they addressed the question if and to what extent young people should 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 relevant that they can get in touch with fellow YCs, face to face and/or digital, according to the experts. Furthermore, schools should rather be more flexible to the group of 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 and family is involved with collaboration between stakeholders from social care, healthcare, government, and education. Experts reported that such an integral approach is needed in which knowledge is 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 synthesized 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.
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 that there should be less inequalities within and between countries. Experts mentioned a lack of recognition and knowledge among adults working with youngsters - among others - social care and schools
According to some experts, an 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 can be viewed as being private and hidden. Furthermore, experts acknowledged that sometimes YCs themselves might not want attention.
To increase visibility, Italian experts shared that it is positive that actions - currently targeting other groups, such as children (not necessarily seen as carers) of parents with mental illnesses or youngsters at risk of early school drop-out - could be applied and/or transferred to YCs. Such as an ICT 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 formation that the individual has had or to personal experience […] This in regard to visibility.” (P3, R2, Italy)
As found in Round 1, awareness is steadily increasing, according to the experts. Experts reached consensus about differences in the level of awareness on the topic of YCs in organizations such as schools, welfare organizations 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 stories of YCs - are reports, brochures, films, social media, and mass media such as TV, radio and the press. Some Swedish experts reported that the YCs they know like to get attention, which contrasts with the results from some other countries. Some experts stressed that campaigns only create some awareness for a short period of time and 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 on 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 on in a letter to the Dutch parliament. On an international level, knowledge could be disseminated at international conferences. The information should include a definition of the term (A)YC, YCs’ life situations, what are 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. There are films on the Swedish Family Care Competence Centre’s website, where children and youngsters tell their stories, making it lifelike and clear” (P6, R2, Sweden).
Experts from diverse European countries acknowledged that on a national level they struggle with ‘formally’ identifying YCs. Screening, assessment and early identification is needed. Whenever YCs are identified, and if they are acknowledged, then formal support is needed to be put into place, according to experts. Experts viewed that the responsibility for developing programmes and strategies is primarily on the State, to support and develop laws and regulations, considering 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 can feel meaningless at best, and harmful at worst.
According to Swedish experts and an expert from Ireland, identification implies acknowledgement that YCs exist and it 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 acknowledge that children may be afraid that whenever they are identified, that they will 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 a routine that health care professionals always ask about children and whether they have any needs when a parent is ill. Several experts agreed that social conditions of a child should be screened when enrolling to school, i.e. that schools may act as a gatekeeper.
Furthermore, experts suggested integrated actions in which educational, social and health services should be involved. However, in contrast to the advantages of involving schools in identification and support, some of the experts did express concerns with too high expectations concerning 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)
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 cautious not to invent the problem by forming too broad a definition of YCs. Experts stressed that we should be cautious that the term YC has 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)
Support for young carers
Whole family approach
It was found that most experts agreed that for interventions to be successful, it is relevant to have the family involved in the intervention and work from a family perspective In the second round, experts explained that whenever starting from a family perspective, it can open up opportunities for identifying YCs and the roles and needs of all family members. In addition, experts argued that starting from a whole family approach it is possible to provide concrete, practical and emotional support to all family members, thus relieving YCs and to arrange follow-ups.
Experts reported that there is a need for better services for the care recipients as well as for relief and respite for YCs. In addition, to a family-oriented perspective, it is important to look beyond the family and include the broader social network, such as friends and neighbours, according to experts.
“I mean if I look at the health field that's really where we need the focus away from the individual to the family [...] force the idea that health problems always affect the whole family and not just the individual and it's the medical field’s responsibility to look at the whole family.” (P3, R2, Switzerland)
“A whole family approach is [...] a very good approach. And this is a tricky one but obviously we know that the earlier you receive this kind of support, then the better. Later on there are some things about how you might pick up these families quite early. And that’s really, really important. You can’t really optimize that if it comes in too late.” (P3, R2, UK)
Interventions and personalization
During the second round some promising examples of personalization of interventions were reported on 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, 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, creating flexibility for students is important according to experts, for example with support of a carers’ card to ensure flexibility in homework and exams. A relevant 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 building 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, experts 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 programs and interventions specifically for AYCs, as support for AYCs could be inclined in already existing interventions and programs designed for e.g. 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 their preferences 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 of e.g., 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, then the organizations behind the initiative also have a responsibility for control by means of moderation and support of dedicated professionals and structural financing for continuation. Furthermore, online information about support for YCs should rather be directly available and not hidden via complex website 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 formalize 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 does 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 Acts 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 UK experts, a Swedish expert pointed that although laws are reformulated, there is a risk that this will have a small impact on the individual. Experts from Slovenia also emphasized that there is no need for creating new laws/legislation as 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 for increasing the efforts in training and educating 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 considered the scarce available time 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 rather be organized for all sectors (health, educational, 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 work 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)
 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.